Everett Alexander

Dec 17 - back in Dallas

2011-12-17T21:51:00.003-06:00

Thu, Dec 15 was a rainy day so we went to Museum Center instead of the zoo. We met up with Thomas & Zoryana as well as Melissa Miller, her husband & daughter Kaitlyn. The kids had a great time running around... they especially liked the trains in the holiday hall. That evening, at the RMH, there was a magician show for the kids. KP was starting to play Candy Land when one of the magicians came up to the table & showed him a slight of hand trick... after that it was put the game away & let's go watch their show (he said earlier he wasn't interested). He laughed, shouted out responses and generally had a good time.

Fri, Dec 16 - D (for decision) day.. went for an xray at 9am. They are really organized... check in via kiosk... a couple minutes later the receptionist called Everett's name, banded him & off we went to xray. Next stop Dr. Pena's office. After a short wait he arrived. KP was started to cry when he asked him to get on the examining table. Margot had told him that Dr. Pena would do "probies".. which meant he would have to dilate his newly formed anal opening. After his first pull-thru operation KP had to have "probies" for many months to keep slowly enlarge the opening and then keep it from closing. Dr. Pena told him don't worry, he wouldn't hurt him (Margot wondered how he was going to pull that off). He looked at KP's incision and said it looked good. When Margot asked about dilation, he said no dilation... ever! Margot didn't know whether to hold KP & keep him from falling or hug Dr. Pena. KP was SOOOO happy. He said that if Daddy wanted to do "probies" he would tell him "No, Dr. Pena said no "probies." The only other instruction we received was to use double diapers for another 2 weeks.... no straddling till after Dec 29.

After the July bowel management session, Dr. Pena indicated that using laxatives to keep KP clean would probably not work because of KP's condition (very high imperforate anus). Now he told her to call the bowel management clinic in 6 -12 months to have another try at the laxative regime... though he's not promising it would work.

We left Cincinnati right after lunch. We drove until we reached Mayfield, KY (Margot never ever wants to go back there) and spent the night. Today we planned to drive to Hot Springs, AK and visit the train museum & a hands-on children's museum BUT decided once we got there that we could make it home. So we pushed through and arrived around 7pm... yay. End of Cincinnati saga...

Thank you to doctors, nurses & staff at the Cincinnati Children's Hospital and to the staff at the Cincinnati Ronald McDonald House.

Almost ready to leave Cincinnati

2011-12-14T06:13:00.002-06:00

The past couple days have been laid back days... meaning we didn't leave the premises ... not that we actually rested since that's hard to do with an active 4 year old. On Monday, Margot wasn't feeling well. She went to Urgent Care & found out she had an ear infection - both ears. Luckily, she didn't have strep throat. She was out of commission for the day.

I introduced KP to the outdoor playground. He LOVES being outdoors. We just bundled up and went out. He spent a couple hours pretending he was Captain Hook Everett... leader of the pirates. There is a bell garden - 4 bells of different sizes - KP loved ringing them... alerting his pirates that he was coming aboard... wonderful to have such an active imagination. We played in the indoor playroom & went in search of the "Elf on a shelf." We never did find it today but it kept KP busy running around & looking.

About 5pm, he noticed the train wasn't running so we went to the front desk & asked about it. He was pretty patient while they got the train ready to run. We met a Mom with her 2 year old, Erin, who was the same size as KP... and just as active. They will be here for at least 5 months - he's getting a transplant.

Tuesday, Margot went to a parents' meeting (bowel management in session this week) in the morning. KP & I hung out and played. Going out to the playground is a good way to bribe him to get out of this pajamas (it must be hereditary...I'd stay in my nightgown all day if I didn't need to go out). After lunch we played games - Chutes & Ladder, Candy Land, go fish (most of the fish were missing)... also put together some puzzles.

Tuesday evening we signed up to take the shuttle to the zoo. They're having their Festival of Lights. We met up with Thomas Evanoika (single dad) and his daughter Zoryana (3 1/2 year old ball of fire). They're here for bowel management - she's in the enema program. The lights were beautiful. KP actually sat on Santa's lap AND agreed to have his picture taken... Stephen dodged the bullet there. Margot told him if she couldn't get KP to take a photo with Santa, he would have to sit on Stephen's lap and she'd photoshop a Santa suit on Stephen.

We didn't see many animals since it was dark but we went through the birdhouse ... interesting. To encourage breeding they keep the penguin quarters dark most of the time to simulate the same light conditions they're use to in the winter. There were huge rooms for birds from different continents filled with trees & shrubs ... they're free to fly/walk around.

We rode the train and watched a puppet show. We had to walk fast to get to the shuttle... the time flew by. KP had a grand time. When he got back to RMH he said he as hungry ... his mouth felt like having a cookie. He's going to miss having sweets whenever he wants... when he gets home it'll be back to his normal diet... might go into sugar withdrawal:)

Maybe on Thu. we'll go back to the zoo during the day... if it's not raining hard.

KP attended his first pro football game

2011-12-12T07:23:00.002-06:00

Yesterday, Dec 11, Margot took KP to Bengal stadium to see the Bengals & Texans (Houston) play. She won 2 tickets from the RMH. They bundled up and headed for the stadium (Stephen & Frances drove them.). He didn't try to run ahead... held hands until they made the long trek to their seats.

KP had a WONDERFUL time. He met Bengal Santa Clause..but refused to let Margot take a photo. He loved standing up & cheering and waving his giant Bengal tiger paw. Most of all he loved eating cotton candy & throwing peanut shells on the ground after he cracked them open. He lasted to the beginning of the 4th quarter... then the sun moved and they were sitting in the shade... and he ran out of food.

He told Margot he was cold & wanted "inside, inside.."... then he ate a hotdog.. then wanted to leave. A very good day. Stephen & Frances drove them home. Then they said good bye... had a nice trip visitin KP.

On Dec 10, we started out late because the "therapy dogs were coming at 1pm. KP kept asking us if it was 1pm yet... but when they arrived, he didn't want to pet them, just look.. from this angle & that, from upstair, around the corner, etc. Finally, he sat down to brush a huge Newfoundland named Jake... then he was off. Afterwards we to the Fireman's museum where he sat in a fire truck, blew the horn, turned on the sirens, made the lights go on, etc... it was a trick to get him to leave.

Then we ran some errands... not too much fun for the little guy. We discovered Jungle Jim's market. It's a warehouse sized store with items from around the world.. kind of like Cost Plus World Market's food section on steroids. Definitely a destination. I could have spent half a day exploring. KP was happy because he rode in a "car" shopping cart & got a truck filled with toosie rolls.

Dec 10

2011-12-10T06:23:00.003-06:00

Well, Mr. Man surprised us again...which should no longer be a surprise. He was scheduled to be released on Friday... but was released on Wed (remember surgery was on Nov 29).

Around 5pm on Dec 6, Dr. Pena came by to check out KP's incision...everything looked good. KP asked him "When can I eat something in my mouth?"...and Dr. Pena said "right now." Thought they'd start him off with a restricted diet...nope.. anything he wanted. Immediately, he asked his nurse for graham crackers & apple juice.. which he promptly inhaled. Then he ordered: mushroom & cheese pizza, veggie plate, popcorn & chocolate milk. Margot said she'd bet $10 that he'd only eat a bite. She would have lost that wager if anyone had taken her up on it. He didn't eat the whole thing but did make a major dent (they sent corn instead of popcorn but he still ate a few spoonfuls.). That evening he had is first bowel movement since surgery. It didn't seem to hurt...he told me he thought he pooped his diaper but wasn't sure...a bit later he said he was sure & wanted it changed.

He slept till about 330am on Dec 7 & woke up complaining that his bobo hurt. His diaper was wet so the urine was probably bothering his incision. Then we had a prolonged argument about putting on his diaper... he insisted that HE needed to take a photo of his "sitches" on his bobo for his dad..with my iPhone. Since that was physically not possible we were at an impasse (the nurse came in to see if there was anything she could do since he was SCREAMING)... I was finally able to distract him & get him back to bed. After that, he still complained about his bobo hurting (seemed like it was just itchy) so he got some ibuprofen and all was right with his world. He watched 101 Dalmations until he fell asleep again. He asked the nurse when he could order breakfast...his tummy was hungry.

Around 7am, Dr. Pena's assistant & her team came in. She said if KP's AM irrigation went well, we'd be released! Margot scrambled & talked to the RMH manager to see if they had a larger room available. Meanwhile, KP woke up and ordered raisin bran, bagel, fruit & glazed doughnut. I started bringing our belongings back to our room at RMH. While I was there unloading, I found out we got a new room...yay! So I moved all our stuff & cleaned our old room....then started to transport more stuff from the hospital to RMH...we had enough stuff for a family of 12 :) Amazing how many electronic devices, book, toys & jammie bottoms this kid has. By 1pm we were settled in our new room at RMH.

Later that day, I heard my name (rather Susan Aishiteru...huh).. over the loudspeaker... the receptionist said I had a package???... but when I turn around I saw Stephen & Frances. They had flown in to surprise KP at the hospital & got a surprise themselves...he wasn't there! He was SOOOOOO happy to see them. He immediately took them on a tour of RMH...Mommy & Bachan you stay there-pointing to the dining room.

The past few days has been a mixture of halos and horns... at least one major meltdown occurs per day. Between the meltdowns KP is a pleasure to be with. I think the lack of routine is part of the problem....the other part is his being 4 years old :)

Dec 8 we went to Wright Patterson Airforce Base museum. We only saw a small portion of it...very interesting. In some sections you can walk up close to the planes (you could touch them if there weren't signs asking that you not.). You can go inside several of the former Presidents' planes. KP liked anything you could walk inside or sit inside. Major meltdown while in the restaurant for late lunch. KP almost didn't get lunch (about 45 min ...in and out of car with Mommy). Finally agreed to terms (yes, it's like a union negotiation) & came back in and ATE almost a full portion of fried rice, ginger chicken, creme filled wonton... didn't think that much food could fit into that skinny kid.

Dec 9 we went to Cininnati Museum Center. What an AMAZING, FUN place! So much for kids, of all ages, to do & see - lots of exhibitions, lots of hands-on play. KP liked running through the caverns, playing with water & sand, pretending in their HUGE kid's town. Mamaw & Papaw were ready to drop. Major meltdown before we left RMH - BIG argument about eating lunch AND putting on shoes. KP & I went back to room until he agreed to put on his shoes (about 30 min before he got really bored sitting on his bed)

Today is another day...we'll see what happens. Margot got up to brush her teeth & when she got back, KP had taken her pillows and made a "bed" on the floor... it'll be interesting :)

He's eating!

2011-12-06T19:07:00.004-06:00

Today Dr. Pena examined Everett and declared he was OK to eat & drink anything he wants. His first request was for graham crackers and apple juice. While he was eating he asked Mom to order dinner... mushroom pizza, veggie plate, popcorn & chocolate milk. They got everything right except the popcorn..he got kernel corn instead...but he still ate some. He topped it off with a grape Popsicle. Now I hope he doesn't get sick during the night.

Everett is doing great. Now that his veins aren't being pumped full of sugar, he might calm down a bit...here's hoping. The first time I got him down from bed and told him he could come with me to get water he pointed to the pole. When I said he wasn't attached, I saw the light bulb go on... he's going to be more difficult to keep track of.

Tomorrow he begins his enema regiment again. He'll have 2 enemas (his normal amount cut in 1/2 and administered 2 times a day.). Not sure when he'll start once a day enemas but I'm sure Dr. Pena or his staff will let us know.

Speaking of Dr. Pena.. when he came in KP showed him a pair of "googly" glasses (eye balls attached to slinkies). Dr. Pena immediately put them on and started talking to KP...missed a great photo opportunity. KP says he'll miss Dr. Pena when he leaves .. great surgeon.. great with kids.

Now KP is tucked in with a warm blanket... watching 101 Dalmatians...
If everything goes as scheduled he'll be release on Friday. We'll all move into the Ronald McDonald house. He has a post-op appointment scheduled on Dec 16th.

December 1

2011-12-01T11:52:00.003-06:00

Can't believe it's already Dec 1. Everett is doing well... would one expect any less from a rock star?!
NOV 30:
In the morning, he was still hooked up to monitors & wires/tubes so he was confined to the room. The "toy lady" came to take a toy order from him. He ended up getting a big firetruck, a big ambulance, a box of Legos and a couple of superhero action figure. He was having a great time.

Since he didn't really need his PCA (patient controlled analgesia)- we only pushed the button twice since midnight & that was after a procedure, just in case. The nurse got orders in to unhook it. They plan to give him IV Tylenol which means he's free to wander around, with one of us controlling his IV pole. Pretty good at one day post-op.

His first request,after be unhooked, was to go to the activity center. He had a wonderful playing pool, pretending in the kitchen and playing the piano. We went there about an hour before closing...he wanted to hug every nurse & doctor he saw on the way.

His incision looks great. Dr. Pena came to visit & check up on him. He shook Everett's hand ... then Everett said "Dr. Pena, you talk crazy"... then he & Dr. Pena had a brief conversation about who talked crazier Dr. Pena or Everett. The talk ended with KP giving Dr. Pena a hug and a wave good-bye.

He is still asking to eat. Margot had been saying they'll feed him through his tube because they wanted to keep his "bobo" asleep. Later in the evening they started "feeding" him through his PICC line. He told Margot what kind of food he thought was going into his tummy.

DEC 1:
This morning I woke up to find KP sleeping with his head at the foot of the bed... luckily no leads were pulled out. He woke up pretty happy and then told me to go back to bed ... then fell asleep again. He woke up later saying he was going to hit the nurse call button because one of the alarms was going off a bit too long (in his opinion). He also learned to operate the bed controls this morning...one of the nurses used the buttons on the inside of the bed to raise his head... foolish nurse.

After breakfast I found Margot & KP in the activity room. He was playing pool and working on the computer. He loved playing in the kitchen...making toast and pizza. Playing with pretend food doesn't seem to bother him or make him think of eating. When we were about to leave he discovered the paint easle... next time he wants to paint..that should be interesting.

Aunty Jessic, Uncle Colin & Aidan sent him a cool gift.. three balloons (Cars, Square-pants Sponge Bob & Get Well) and a magnetic Cars puzzle pack & coloring book. Such a good idea since the puzzle pieces stick to the box & don't get lost. He is having a lot of fun with it now.

Nov 29 surgery day

2011-11-30T04:24:00.003-06:00

Yesterday, Nov 29, was a busy day. They came to get KP around 8am to take him up to the OR. He was wrapped in his dragon blanket with a warm blanket on top - like an Everett burrito.

He got out of the OR a little after 11am. Dr. Pena said the surgery took longer than expected because of all the scar tissue - that's our boy, a scar tissue producing machine. And there was a surprise -- they found a sphincter muscle very near his scrotum. When KP had his first pull-through, Dr. Renard didn't find a sphincter muscle so he attached to the little dimpled area where a sphincter might have been ... but Dr. Pena found one. HAe & his team have done thousands of pull-throughs...experience counts for something. The pull-through was rerouted so it now attaches to the sphincter. This gives it a good attachment point AND we don't have to deal with old scar tissue.

Dr. Pena said "nothing to eat or drink...not even water" for 7-10 days. Wow... now that's going to be a problem. They'll start administering nutrition through his PICC line sometime tomorrow. He also said absolutly no straddling anything - fences, bicycles, motorcycles, horses, cows, camels...nothing for one month... so effectively till Jan 1. KP has a long incision right down between his butt cheeks..OW. Dr. Pena said after the first couple of days KP shouldn't feel any pain and will probably want to start jumping around...we have to prevent him from doing so.. another wow.

KP was a bit long in Recovery. They had to set him up with a pain meds pump before we could go back - one pushes a button for doses of pain meds (timed so you can't overdose). They said to use it when he seems uncomfortable but not while he's sleeping.

When we went to recovery there was no one on the gurney. We looked around an KP was in the arms of a big male nurse. He said KP woke up and told the nurse he wanted him to pick him up...so that's what he did. They are VERY accommodating at this hospital - whenever possible they'll do what the kids prefer. KP was one bundle of dragon blankie, tangled wires & tubes. When he saw Margot, KP wanted her to hold him... then he kept yelling "stand up Mommy" even when she was standing. She explained to him that she wasn't as tall as the nurse and that she WAS standing...so KP said it was OK to put him on the table.

Usually they keep him pretty medicated on day one post-op and today was no exception. KP's body was just not cooperating. He was still wonky and delirious, at times but he wasn't having this resting stuff. He was on the move... he wanted to sit up, play his games, watch his shows... he refused to urinate in his diaper or in the urinal tube..he had to get up & sit on the porta potty. Whenever he got done with the potty, Margot hit the pain med button & KP would drift off for a short bit - but not a deep sleep. The anesthesia RN came by to check in the evening and said she'll prescribe a muscle relaxant. He might be having muscle spasms that are keeping him awake but can't tell us this (he has been saying he feels like he has to poop...so maybe he is having spasms). The meds should calm that down ... we'll see.

And about keeping him occupied so he doesn't think about eating... it's NOT working. He's been asking for popsicles and breakfast since he got back to his room (so far Margot has been able to get him off the subject for a bit). Since he isn't getting any nutrition, only hydration, through his PICC, his tummy is hungry. Margot told him that tomorrow he can have something to "eat" through his tube that will make his tummy happy. KP said he wants something through his mouth. We tell him "Dr. Pena's orders"... I think Dr. Pena will get an earful tomorrow :)

On another note - we're in Ronald McDonald House...yay! It's a big house around the corner from the hospital. They have shuttles in the evening every half-hour (not the nicest of neighborhoods). There are around 12 paid staffers (someone available 24/7) & everything else is done by volunteers...WOW. We have a one bed room right now but hope to get a larger room closer to KP's release date. The staff and volunteers are really friendly & helpful. There are kitchens to prepare meals but volunteers provide dinner... this time of year volunteer groups seem to be providing 3 meals a day (you get a schedule every Sunday). They ask for $25/night donation - emphasize that this is only a donation & if you cannot manage it...no problem. The kitchen always has bread, milk & eggs - all donated. They also have a pantry of donated goods - canned goods, condiments, staples like flour, sugar, chocolate... Natalie, the evening manager, said to treat it like your home...just clean up after yourself. There's a sign, in the kitchen, saying not to hand wash anything due to sanitary concerns. I asked what to do with one dirty coffee cup. They said just to put it into any available dishwasher...when it fills up, the person who puts the last dirty dish in should start the dishwasher...just like at home.

When KP is released, he'll like this place... lots of stuff to do... lots of activities...craft rooms, dvds, outings, etc. This is great place...much better than a hotel.

In Cincinnati

2011-11-28T09:03:00.005-06:00

Arrived in Cincinnati on Sunday (1 day early)... KP was a super traveler. He just turned into crazy kid when we got out of the car. Visited Dinosaur World...nice for him because he could run around and burn off some of that sugar (from his car treats). He also go to "dig" for fossils.. got two fossilized scallops and some other thing to take home.

Spent most of Sunday in the hotel room. Amazing what a four year old can do with a footrest with wheels ... who needs toys. Also liked playing his games for a while but ended up playing pretend for most of the day.

Today we got to Children's Hospital around 6:45am. We got taken back to pre-op right away...very efficient. The anesthesiology nurse practitioner was the first to arrive and start getting KP's history, then the administrative nurse, then the PICC line nurse... most of them looked like they should still be in high school :) I'm sure we'll see a lot more nurses and doctors before our trip is over.

KP getting a PICC line installed today which will work a lot better than trying to get an IV line in (since we'll be here 3 weeks). Margot & I got to go into OR & wait till they put him under ... what a rock star. KP told the crew that he wanted to move himself from the guerney to the table... then he laid down, closed his eyes & told them to put the stinky mask on (anesthesia is suppose to smell like strawberries but KP says it just stinks.).

We're waiting till he's in recovery .. estimate 73 minute - a computer estimates the time :) Will post again later today.

1045am - KP in recovery...we'll be able to see him as soon as the nurses are ready.
It took 2 tries but the PICC line is in just where they want it.

KP doing fine...a bit groggy... says he feels wobbly. Upset that he's not going back to the hotel but the nurse took his mind off of that by offering him a slushy :) These slushies count as clear liquid...yay... just a popsicle softened in micro with a bit of Sprite added.

Settling into our room for the next couple of weeks. We rought enough stuff to, hopefully, keep him busy and his mind off of food post-op. Today he starts his diet of clear liquids. They have him hooked up to a IV drip. They'll start giving him "go-lightly" to start cleaning out his bowels. They will need to insert a tube into his stomach (through his nose) since he wouldn't be able to the drink the amount they need to clean him out. Too bad they didn't think to insert the tube when he was in OR.

Good news - they can administer the "go-lightly" through his Malone. They'll give him a bagful, then give him a rest, then give him another bagful, etc. until he's cleaned out. He's content looking a shows on his ipod while sitting on the potty.

KP is now in bed eating popsicles and playing xbox games. Dr. Pena came in to introduce himself. The surgery is scheduled for 7:45am tomorrow, Nov 29. It should take 2 hours. Dr. Pena shook KP's hand and introduced himself to KP. KP was a bit preoccupied with playing his xbox game but did give him a thumbs up when Dr. Pena said "I'm your doctor and you are my patient. See you tomorrow."

KP will participate in a one time study. They're testing out a new way to monitor recovery. In addition to the traditional monitor "stickies" they place on his body he'll have one on his neck. They're testing to see how accurate the readings are compared to the traditional methods of monitoring. The nurse in charge of the study assured us that if KP feels any discomfort or has a problem with the "test strip" they will remove it.

Dr. Pena ordered continuous "go-lightly" so now KP is set up on a porta potty. He's OK since he can play his xbox games rather than merely watch his shows. He also ate all the orange popsicles so now they only have grape. He did ask if he could have regular food but Margot explained that he couldn't. He was OK as long as he could have a steady supply of popsicles and slushies. Don't know if they'll try broth later.

Midnight - they finished with the "go-lightly" but still had to irrigate his bowels... the nurse squirts 500 ml saline, a little at a time, up into his bowels then suck out the poop...blah. The nurse is getting medical attention outside the room...guess all this was too much for her. But KP is now finally tucked in and asleep. Margot will try to sleep now but since they take vitals every 4 hours I'm not sure how that'll go. (I'm in the nice, quiet hotel room getting text updates from her).

Tomorrow is the big day...will update after surgery..

We are idiots

2011-05-19T18:00:00.001-05:00

We have always wondered a little bit about what a Fatty Filum is. If you recall, years ago, we went in for a tethered cord release on KP. After surgery, the neurosurgeon came back and said “the good news is that his cord was not tethered. He just had a fatty filum, so we got in there and cleaned that all up.” And that was all that was said about that. We figured that it may have ended up being an unnecessary surgery, but at least we were proactive.

I have searched for the term a couple of times since then, and never really got a lot of answers, so I just dismissed it. The problem was fixed, no need to really worry about it. Someone mentioned a tethered spinal cord on one of the boards I’m on, and it prompted that little feeling in the back of my head asking what IS a fatty filum?

After searching for it again, I finally got a clear definition including implications and wow. It just blew me away. You really should hear the tone of voice we use when we respond to doctors about that particular surgery “no, we thought he had a tethered cord but it turned out he just had a (?)fatty filum (?)”. That is just about the only part of KP’s medical condition that we have ever been unsure of or not understood completely, and we always just blow it off. I have always treated it like the neurosurgeon dealt with the fatty filum because he happened to be in there anyway, so he might as well do something. Doctors must think we’re idiots, because here is what I found today:

“The filum terminale is like a thin elastic band, about 8 inches long. At the top, it is formed from one of the layers of tissue surrounding your spinal cord, and extends from the bottom of your spinal cord to the tip of your tail bone. The outside of the "elastic band" has a few nerve fibres sticking to it.

The filum terminale works as an anchor for the spinal cord. For people with normal anatomy, the filum stretches when they bend over to allow the spinal cord to move up in the spinal column and then goes back to normal length when the person straightens up and gently pulls the spinal cord back to its normal position.

When the filum is fat-filled, fibrous and tight, it will not allow the spinal cord to move up and down within the spinal column, and so the spinal cord and the nerves end up being stretched instead of the filum. In most people this causes nerve damage".

Everybody has a filum terminale; it is a threadlike piece of tissue that connects the end of the spinal cord to the sacral end of the spinal canal in the pelvic area. In patients with a thickened filum (defined as more than 2 mm in diameter) [Yundt, 1997], the filum is shorter or lower-lying than normal and is thickened with fatty or fibrous tissue. This abnormality causes the filum to become relatively inelastic (a bit like a rope or cord, rather than an elastic band) and the spinal cord becomes tethered at an abnormally low level, thereby giving rise to the recognised signs and symptoms of a tethered spinal cord”

Yep. We are i-d-i-o-t-s. We are incredibly lucky and blessed idiots, but we’re still idiots. This doesn’t change KP’s outcome. This part of him got fixed and no complications are expected. It has just hit me that we didn’t just dodge a bullet, we dodged a big ole missile that we didn’t even know had been fired.

Giants of the Savannah

2010-05-23T06:16:00.000-05:00

The Dallas Zoo had a members preview of Giants of the Savannah this weekend. So, of course we had to go again (to the zoo for the second time in as many weekends).

The zoo opened at 9am, but the exhibit didn't open until 10, so there was quite a bit of waiting to be done. We got to meet some really nice people while we were in line, though. And Daddy and KP ran around and explored other parts of the zoo while I stood in line.

The elephant exhibit is pretty cool. Oh, did I mention that I still haven't charged my camera battery yet? So these are all cell phone pictures. I know. I'm married to a photographer, and yet we always seem to be without a camera.

The giraffes are probably the coolest part of the whole exhibit. You can buy food for them for $5, but we skipped that and just got really close anyway. Remember, this is a cell phone picture, which means no zoom. They were seriously this close.

This is from the other side of the enclosure. I think they must let them roam somewhere else when the zoo is closed, because that just doesn't seem like very much room for so many giraffes.

KP loves the statues that they have all around the zoo. He likes to play with them, and he keeps asking "It's not on?" I don't know if he gets that the real animals don't turn off. :) So, we just reassure him, and then he's fine with it. They have a statue of a wart hog by the monkeys, and after we told him it wasn't on, he started picking its nose. Yeah. That's our boy. Allllll boy.

Our trip to the creek wasn't really photo worthy. He didn't want to change when he was done, though, so we just let him hang out in his swim trunks.

After a couple of attempts, he finally got to ride in the nest. A little 6 year old also wanted in the nest, which worked out great, because she was small enough to fit in the nest (unlike mommy), and strong enough to turn it (unlike KP). KP loves any merry go round that has one of these spinny things on it. I can't wait until the State Fair this fall. I hope they have teacups, because this kid is going on them!

KP was even nice enough to let Daddy have a turn with him. :)

All in all, it was a great day at the zoo.

xoxo
Margot

Bachan & Jichan Visit in May

2010-05-18T16:06:00.001-05:00

Bachan and Jichan came to visit us in May. Daddy was at Uncle Wowie's graduation, so KP was stuck with the 3 of us to keep him entertained. :)

On Sunday, we went to the zoo.

KP got a new hat and wanted to pose for a picture with Jichan. The had lasted almost a whole 15 minutes. :)

KP paused at lunch long enough to get a picture with Bachan...well, maybe not "paused" exactly.

Ahhh. Satisfaction. Don't get between a boy and a corn dog stick.

"Hi guys!"
This is KP's favorite part of the zoo...well, almost favorite. But we always have to stop at the creek on our way out so he can play. He likes it when there aren't too many big kids splashing around.

Now this is REALLY KP's favorite. I think he just tolerates the zoo because he knows he'll get to go on the merry go round before we leave. As soon as we get there he starts saying "After the zoo, and after the creek, then I get to go on the merry go round, and then we go to mommy's car?". :)

I took Monday off so that we could spend some extra time with Bachan and Jichan. So, we decided to drive out to Glen Rose and go to Fossil Rim. Well, when we got there, I realized my camera battery was about to die, so we got this cute picture of the zebras, and that's about it.

There was a cute baby zebra running around like a crazy zebra.

Crazy baby zebra.

We had a lot of fun. You can feed the giraffes by hand, and we were lucky enough to find an interested giraffe. KP kept dumping his out before the giraffe ate from his hand, but he was more than happy to offer up my hand instead. :)

All in all, we had a great visit. We can't wait for Bachan to come see us in August. Jichan won't be coming because he doesn't like Texas in August...can you blame him?

xoxo
Margot

Misc. April 2010

2010-05-12T07:59:00.000-05:00

April 20th was community day at school. The kids dressed up as what they wanted to be when they grow up. You'll never guess what KP wants to be....

Sorry. Bad cell phone pictures are all we have.

Then Dylan found himself in an interesting predicament....

No...really.

KP got a new big boy bed. This is his new bedspread.

Okay. This is a bad cell phone picture of a picture in a store.

Since KP had his new big boy bed, he decided he needed to be a big boy and tuck himself in. So, he got a book, climbed into bed, and kicked me out of his room. This is what I found when I went to check on him before I went to bed...

Note to self - do not leave the toddler with a pop up book alone again...it does not end well for the book.

In May, we got together at Kassie and Jeff's so that the grownups could play and so could KP and Madden.

They had lots of fun playing together.

The following Monday, KP got sick. See, we had fun, so he got sick. I'm telling you, there is a pattern there. Anyhow, even Goose felt sorry for him.

xoxo
Margot

Bye Bye Iron Giant Arm & Anoplasty

2010-04-11T07:41:00.001-05:00

April 5th was a busy, busy day. We had to time things just right with KP's iron giant arm and his anoplasty. Both doctors had said they had to get in there in 3-4 weeks, and they both took a week off for spring break. Since his anoplasty was a "dirty" surgery, we could not do the two together. So, we did his iron giant arm as soon as we could, so everything would fall into place just perfectly to coincide with the doctor's orders, as well as some time I had off work.

So, on April 5th, we got rid of iron giant arm, and checked into the hospital for the anoplasty....for bowel prep....woo hoo.

This is where the fun ended. We spent the next 6 hours trying to get an IV in this little man. They stuck him over 12 times to the point he was hysterically screaming. And here's the kicker. When I requested he be taken down to an OR to be sedated for them to get an IV in, they said he could go without it until morning. Really? Then why did you just spend the last 6 hours sticking my kid IN HIS BED?!?! That's the other thing that kills me. They don't have a procedure room. This is the main hospital that we go to for everything, but we have been to other Children's hospitals, and they INSIST on procedure rooms. This one? Nope. So, everything bad that got done to KP was done IN HIS BED! (If you don't know, a procedure room is a different room where they take kids to draw blood or put in IVs or anything else unpleasant, so that they will feel safe in their room). This was the worst hospital experience we have ever had. Since we have been through so much for him, we know this is the exception, and we have no hard feelings, but can you imagine if this was an isolated surgery for a young child? That's what upsets me more than anything.

The surgery went well, and KP was ready to scarf down a big breakfast as soon as he was allowed.

Dylan took nights in the hospital again. KP was having some gas issues.

You have to be creative when you have a kid ready to go home that still has another day left in the hospital.

As soon as we got sprung from the hospital on the 8th. On the 9th we got a new brace and then we packed up and went to Papaw and Mamaw's house. Mommy and Daddy had big people plans that weekend, and since KP was feeling sooo much better, we went ahead and took him out there.

This is KP missing us.

I was a bad mommy and totally forgot his puppy in the car, so he got to sleep with Josiah's Buzz Lightyear. :)

Yep. Still missing us.

xoxo
Margot

Country Critters Farm

2010-03-28T07:28:00.000-05:00

We wanted to try a new place to go, so we went to the Country Critters Farm way in the middle of nowhere. I think it would probably be fun to go to with a party, but only fun for us because KP got to run around freely. But, we could have found a place to do that closer to home. Oh well, you live and you learn. We always love new experiences. And this is 2 days post op. Notice the fun Iron Giant cast. :) Now that KP knows it comes off, he keeps saying "okay. It's time to take this off now" like he used to say about his brace. :)

We stopped at Grandy's to get the adults something to eat, because KP was sleeping. But the food woke him up, and we lost it to his dinosaur appetite. :)

Once we got home, KP wanted to play in his wagon, and Daddy wanted to take pictures, so it all worked out for everyone. :)

xoxo
Margot

March 2010 - snow again?

2010-03-26T07:17:00.000-05:00

We spent some time out at Mamaw and Papaw's house with Josiah.

And it snowed...again. This is the only picture we took. This is how over snow we have gotten. I still love seeing it, it still makes me happy, but it just isn't picture worthy after so many snowfalls. :)

In March, I went to Muncie, IN for work, and while I was gone, Dylan had to squeeze in a photoshoot to meet a competition deadline. These are the pictures that he took that I love, but didn't make the cut for competition.

One of my favorites for sure!

My other favorite.

This is KP honoring his Japanese heritage by wearing a crazy had and flashing the peace sign in a photo. :)

Even Goose got in on the fun. :)

While I was gone, it was time for KP to go back for a revision of his hand. The scar on his thumb was getting particularly nasty, and pulling his thumb at weird angles. So, Dylan got him all bundled up and off to the doctor.

KP has decided that this cast will be blue, so it will be Iron Giant arm. :) Hopefully this will be the last time we have to name a cast for him...well, at least in the near future. I can't believe for a second that we will get past his childhood without him breaking something...but I can hope. :)

xoxo
Margot

Misc. February 2010

2010-03-01T07:14:00.000-06:00

Papaw came to visit on the 15th for a late Happy Birthday. :)

And KP got a new Bachan Hat that fit him just a little bit better.

The boys spent some time in lockup.

xoxo
Margot

Snow again?

2010-02-14T07:04:00.000-06:00

Feb 11th brought more snow again. Craziness! But, we're excited. :)

This is from pretty early on. It got up to 10.5 inches.

This is what I woke up to on the 12th.

Even Goose had fun. :)

xoxo
Margot

Bachan & Jichan come to visit (Jan 2010)

2010-02-02T06:55:00.000-06:00

Bachan and Jichan came to visit at the end of January. KP was very, very excited! :) Mommy and Daddy were excited, too, and not just because we get to sleep in a little when they are here. :)

We took KP to get his third professional haircut ever.

And then it was time to jam.

KP has been having a bad run of ear infections, so we went to see his ear ENT (because he has an ear one and a nose/throat one...don't ask). KP's ears were rejecting his tubes, so it was time to switch them out. He did amazingly well. This is the first time he has ever come out of the OR in a good mood, but there he was, sitting up in his bed with a smile on his face. :)

Then it was time for Bachan and Jichan to go home.

xoxo
Margot

Welcome, 2010

2010-01-18T06:50:00.000-06:00

And to welcome the new year in properly...

On Jan 16th (Happy Birthday, Jessica), we met Mamaw, Papaw, Uncle Jam Jam and Josiah at the Fort Worth zoo. I'm sure they all had a great time looking at everything. KP and I ran laps around the zoo and saw everything in fast forward. :)

I thought this might slow him down. :)

After a fun day at the zoo, the poor little one came down with a fever. This is how it always seems to go with him. We take him out for a fun day and he ends up sick.

So, we got to take a trip to the ER.

They gave us a breathing treatment at the hospital, and sent us home with oral steroids and antibiotics. Yay. Since it was dawn by the time we got home, everyone was kind of tired.

xoxo
Margot

Christmas recovery and the end of a year.

2010-01-02T06:42:00.000-06:00

Recovering from Christmas Marathon 2009.

Well, KP is anyway.

This is KP's next big conquest. He's got the guitar mastered, so now it is on to the drums.

Mommy and Daddy actually had adult plans for New Year's Eve, so KP got to stay with Josiah at Mamaw and Papaw's house.

Blurry, but too cute not to post.

All in all, 2009 was a crazy year. Thankfully, not as many surgeries as 2008. :) And KP has come so far in his journey. I can't wait to see what comes next.

xoxo
Margot

White Christmas

2009-12-26T06:24:00.000-06:00

KP still isn't using his hand much. I think he is waiting until it looks less gruesome. We have had to put a sock over it a few times because it was upsetting him so much to look at it. :(

But on to more fun updates:

On Christmas Eve we went to Mike & Mary's house for Paroski Christmas. And would you believe it? It was snowing....on Christmas EVE!! :)

Santa came while we were there. :)

Uncle Jam Jam and Josiah

Mamaw, Papaw and Uncle Josh

And while we were there, the snow just kept falling.....

As soon as we got home, we put KP in bed. Santa came while we were sleeping, so KP woke up to a wonderful Christmas present...

Just waiting for the kiddo to wake up...

Then it was time to go to Uncle Chris and Aunt Edith's house...

The day after Christmas, we went to see G-Daddy and G-Momma for another Christmas. :)

This is KP not so patiently waiting for me to liberate his new dump truck.

Now he is waiting for Daddy to hurry up and take his picture so he can play with his newly liberated dump truck.

He also got a pretty cool train set.

And basically a new motor pool.

Whew. We are worn out!

Merry Christmas.
xoxo
Margot

Thanksgiving 2009, Josiah, Bye Bye Astro Boy Arm

2009-12-15T06:07:00.000-06:00

We have had busy times since Astro Boy arm came into the picture. :) KP has been loving every minute of it. No tantrums just because of the arm (plenty, just because he is 2). He will ask for just as much help as he needs, which means we are often just the other hand.

The other day, he wanted to carry his water into the living room from the kitchen, but he had a big daddy glass, so daddy held one side, while KP held the other, and they wandered into the living room like that. :)

I went out of town for Thanksgiving to celebrate my mom's 60th birthday, so Dylan and KP were on their own for a while. :) They had a lot of fun, and they even got to see Uncle Wowie at Aunt Cindy's house. :)

I got back just in time for us to celebrate Cousin Josiah's 3rd birthday! :)

All ready to go. This whole cast period is marked by very large fashion choices. It is tough to get that thing through any armhole!

This is the best picture we have. I will just say that I think that both the boys had a great time.

Then, on December 14, we went to say bye bye to Astro Boy arm. This was a sad day for KP. I'm going to post some pictures below of them taking his cast off. Some of them are quite cute, because he takes it all in stride. However, there is at least one picture of the pin coming out of his thumb that is not so cute. So, keep scrolling at your own risk.

We were lucky that they happened to have some soft cast material in the OR the day of his surgery. No saws to get this cast off, just water and scissors.

This pin is actually quite huge.

KP was okay until he saw how gross his hand looked. Then he started crying. I imagine he was just expecting his regular old hand inside all that mess.

This is the pin that was in his little thumb. That is daddy's pinky finger. That is pretty darn big to be in a 2 year old's thumb. I'm just saying.

And then we went home and played with TiVo (because that is a favorite for KP). His hand is pretty limp and flat, and his arm keeps floating up because it isn't carrying the weight of the cast anymore. We are a little worried, but we will just have to wait and see how this turns out.

xoxo
Margot

Astro Boy Arm

2009-11-18T06:06:00.000-06:00

So the surgery went great. KP was a little groggy waking up, like he usually is. But, after he really woke up, he looked at his cast and said "Mommy. I have an Astro Boy Arm!". And that seemed to settle the whole thing.

Don't be fooled by that sling. That lasted about 25 seconds after he woke up, never to be seen again.

See what I mean. :)

Then he ate 5 bags of goldfish while we were waiting for the doctor in day surgery, so we got to go home that very same night! I was impressed.

Sorry for the graininess. This was an incognito cell phone pic. The cute story about this, though, is that since they had his IV in his left hand all bundled up on a no-no board, he only had two fingers available. So he would have me hand them to him one by one so he could eat them with his two fingers. This is when he still thought he could manage by himself. Haha.

So, of course, you know daddy....

He will have to keep the cast on for 6 weeks. We will see how this goes. Right before this surgery, KP started opening doors with both hands, and his independence has grown, so it will be interesting to see how he manages with one hand in a cast.

xoxo
Margot

101st post :)

2009-11-15T20:33:00.001-06:00

Wow. The last post was our 100th post, and I missed it. I really was planning on doing something monumental with that post. Well, I guess I'll have to wait until our 125th. It will give me some incentive to keep posting. At this rate, KP might be 5, though. :)

They have been talking about Thanksgiving at school this week, and KP's teacher asked everyone what they were thankful for -- KP said "cars". Everyone (including his teacher) was shocked that he didn't say "choo choo trains". So, here is how our conversation went the next morning:

   Mom: Did you talk about Thanksgiving in school yesterday?
   KP: hai
   Mom: What are you thankful for?
   KP: ummm.....trains
   Mom: Anything else?
   KP: ummm....no.
   Mom: So, you're just thankful for trains?
   KP: hai

So I guess that settles that. :)

We spent the week oversanitizing KP's hands, and doing everything we could think of to keep him healthy, and it appears to have worked. So, it looks like we are on for surgery this week. Here's the breakdown in case I don't get to post again.

Tomorrow (Monday) we have our preop appointment with KP's hand doctor. I'm pretty sure this is just her chance to see if he has grown any, and to make sure that he doesn't cough in her office like last time. We will also be doing our check-in and registration with the hospital since we will be arriving so early on Tuesday morning -- here's a side note -- in all of the surgeries that we have ever done at MCD (and you know there have been plenty), I have never been given the option of doing that part the night before. We have had very early call times, and I don't remember ever being given the option of checking in the day before. I could be wrong, and my memory could be faulty, but I just don't remember it. It's a nice change, anyway.

Tuesday (Happy Birthday, Candy) - we are arriving at the hospital at 5:30am for prep. What this really means is that we will show up so that they know we still want surgery, and we will spend 2 hours in the play room until the OR is ready for us.

Surgery is scheduled to begin at 7:30. It usually takes him a little longer to get down, just because I think it takes a little more, he fights it, and we won't give him goofy juice because it is like trying to lightly sedate a rhinoceros. So, I'm thinking, in reality, surgery will begin around 8ish.

The initial estimate was 2.5 hours, but I think that the doctor has added some things and we are now looking at 3.5 hours....crap. I just realized that I probably should have called his GI and Pulmonologist to see if they wanted to hop in on this one because he has a couple of scopes coming due. Oh well. I always forget to contact the masses. Anyway, around noonish he should be waking up with a cast. Woo hoo (does the sarcasm read here?).

He will be spending the night in the hospital. Right now it appears that we are scheduled for the general floor (gag), but they may change their mind and send us to PICU (yay). Either way, the little man should be out of the hospital by Wednesday unless there is some unknown complication.

We have been showing him pictures of kids in casts, and telling him he will look like Astro Boy when he wakes up. I hope that will help cushion the blow, but you never know. Tomorrow I will ask his doctor if she can cast Paul so that he won't feel so bad. That can't be a new request, so we'll see.

I will try to update facebook regularly on Tuesday, so check there for updates. Just don't get nervous if you don't hear anything for a while -- this is a long, and very exact procedure that we are undergoing.

On a brighter note, here are a few pictures from this week:

Everett and his "hot mittens".

Everett doing "muscles" while wearing his "hot mittens"

This is the stool from Bachan's room. Everett likes to pull it into the livingroom and watch tv on it.

xoxo
Margot

ECI Annual Review and other stories

2009-11-04T11:00:00.046-06:00

I know! Nothing for months, and then 3 times in one week! What is this world coming to?!? Well, I promised more posts, so I'm sure going to try...at least for this first week.

KP has had hearts on the brain lately. When we are drawing, I tag every new piece of paper with "KP ♥ ".
Well, yesterday morning, we were drawing before school, and I tagged his paper, and he said, "heart", and then pointed to his chest. He kept doing it until I said, "is there a heart right there?", to which he replied, "hai" (his version of yes). I'm not sure where this kid is learning all of this, but it is certainly blowing me away. I'm thinking that internal anatomy is not on the 2 year old curriculum....anywhere. Yesterday afternoon, his teacher at school was writing on the parent board and asked the kids what they thought she should put on the board, and KP suggested a heart. Because he loves us. :)

Today we had our annual ECI evaluation. I wanted to link back to last year's post about his evaluation, but all I could find was this one about the appointments that came out of it. As a refresher, last year, as a 14-month old, KP was testing at around a 6 month level. ECI assigned us a Developmental Specialist and a Deaf Ed teacher, both to see him once a week.

In one year, he has progressed two -- according to his Deaf Ed teacher. The results are in:
Cognitive: 33 months
Receptive and Expressive Language: 28 months
Fine and Gross Motor: 29 months
Self-help: 30 months
Social-Emotional: 30 months

At this point, the only reason he still qualifies for ECI is because of his diagnoses (VACTERL, unilateral deafness, cleft palate, etc). Because ECI services will terminate when he turns 3, we also talked about his transition plan at that point, and the consensus seems to be that he may be able to skate by on his diagnoses, but if they base it purely on evaluation, he will not be eligible for PPCD (Pre-school Program for Children with Disabilities)!! While it will be a sad day for us to say goodbye to our wonderful team that has helped get him to this point, it will be a glorious day as well, because it means that we have reached our goal.

We are so proud of our little man today (well, let's be honest, we are everyday). He has faced so much, and has not only overcome, but excelled!

Everett Alexander 2.0

2009-11-02T13:12:00.000-06:00

I know it has been a while. Now that we're caught up with the pictures, I would like to share some of the general things that happened over the summer/this fall, and also announce some changes.

Over the past year, I have been experimenting with including more pictures on the blog. I know that many of you don't really get to see KP very often, and this may be where you turn to see how handsome he is or how quickly he is growing. However, I have also noticed a drastic decline in the frequency of posts. This is due to a combination of things. One is that we just don't take as many pictures as we used to because KP is a man in motion. We take videos sometimes, but those are harder to edit and post. Which brings us to the second reason. Once we do get pictures, they have to be edited (which hasn't been happening lately), and the upload and publishing process is a bit more involved. So, you get pictures, but not much information.

I have been trying to figure out where to go with this blog now, and that has caused me to re-evaluate our target audience. Our readership is way down from 2 years ago, probably because KP has become boring compared to the minute to minute happenings of his newborn life, and also because posts have become so infrequent and unreliable. So, ultimately, who am I writing this for? At the end of the day, I keep writing for us, and for Everett, so that we can get this all published out in a book for us to keep here as a modern day baby book of sorts. Hopefully, this will be a record for KP to look back on and see how busy his young life was, but also to show him how strong he is, in case he ever doubts himself. Maybe it will serve as a record for him to look back on when he himself becomes a parent, and he can see that his parents went through many of the same struggles as he is going through. Maybe he'll see that we didn't always know all of the answers, and that will provide him some comfort.

Whatever the purpose, I feel that I am doing a disservice by focusing on the photos so much, because KPs story is being neglected while I wait for pictures, or wait for time to edit and publish pictures. So, from here on out, I am going to attempt to post more frequently. This is not to say that we will never have pictures again, but I would like to return to our roots where the pictures just enhanced our story.

Let us begin the recap:

Hand Surgery

After KP's visit to Scottish Rite, where they told us that they would wait yet another year before operating on his thumbs, we made the decision to search out a second opinion. At this point it was not a matter of "if", but "when", and we felt that a 2 year old with a cast would be much better than a 3 year old...well, maybe not behavior wise, but there is less impact on a 2 year old's activities with a cast than a 3 year old's. Anyway, we found a wonderful hand surgeon, and scheduled surgery for October. KP decided to get a runny nose and a cough the day before surgery, and let it fully be known in the doctor's office, so surgery was rescheduled to November 17 (Happy Birthday, Mimi). In the coming weeks, we will be pumping KP full of zinc, and airborne, and anything else I can think of to try to pump up his immune system and keep him well so surgery can happen. It is always tricky to try to do things this time of year, but with our work schedule, it is near impossible to do anything over the summer, so flu season it is. :)

This surgery will be on his right hand. We will do his left hand after his right hand has healed. For his right hand, the doctor will take a tendon from the top of his right index finger and redirect it to his thumb. This will give him the ability to pull his thumb up. She will also take a tendon from the bottom of his ring finger and redirect it to his thumb. This will hopefully allow his thumb to come in toward his pinky, giving him a pincer grip. While he is under, she will also deepen the webbing between his thumb and forefinger to give him a bit more mobility. He will be in a cast for a little over a month after surgery, and then will get some sort of OT to help him relearn his hand.

School

KP was registered to begin school at Little Saints this fall in a 2 day a week program. In August, our nanny flaked out on us without giving us notice, and so we were forced to reevaluate our plan. This ended up being one of the best things that happened to us. We found a wonderful preschool for Everett. He loves it, we love it. He is in the Level II classroom, which is set by their age on September 1. This was very important to us, because once he enters school, that is the standard that he will be held to, so we figured it would be best to start him now. He has made many friends at school, and after they are done with curriculum, they have a bunch of different activities that the kids do. We enrolled late, so he is not enrolled in a lot this fall, but next year we will probably take full advantage. Right now he does a tumble gym once a week that he loves. At school, he is learning how to listen, and how to share and take turns. A lot of the blog from here on out will probably have stories from school that his teacher has shared with us. :)

Potty Training

Potty training is still a work in progress with KP. He knows what to do. He knows when to do it. This week he is in a refusal stage. Also, we are still messing with his meds. We have pretty much given up on messing with his diet. There are just too many variables right now. When he gets older, we will teach him about how certain foods affect his bowels, and give him the choice of backing off of his meds in favor of controlling by diet, but we just aren't there right now. When given a choice, he makes good food choices, but the options have to be there. And, since most kids sneer at whole grains, they are not often offered at school. This weekend we started the pull-ups to get him used to them. We hope that as he uses them more at school, it will translate into him wanting to use them more at home. Right now, we're still ahead of the game. His doctors don't think that IA kids should be potty trained until they are 3, so we're good, but he can't move on to a Level III classroom until he is. So, the more we work on it, the better.

The Library

I have rediscovered the joys of having a library card. In college, the library started meaning something totally different to me than it did when I was growing up, and I have just rediscovered the loveliness of the pre-college library. :) KP has loved it because there is a story line that you can call, and you press a button and there is a recording of someone reading a story. Also, it has given us the chance to try out some different material for KP that we probably wouldn't have tried otherwise. Most recently, we checked out a DVD of trains, and a Thomas the Tank Engine read along book/CD set. KP loves books, so I look forward to a lot of fun in the future. Hopefully we will be able to make it to a story-time soon. :)

In general

KP has been developing nicely. He is speaking in 4 and 5 word sentences. He is very opinionated, and very independent. He has been taking instruction well, so it helps a lot when he is having trouble with something, because we can talk him through it (because if we touch it, he will tantrum). I've been finding this age tough to navigate, so I hope the next stage will be easier. I can't figure out right now if we are encouraging his independence, or letting him walk all over us. I think it is a fine line, and it is tough figuring it all out. Whew.

Stay tuned.

xoxo
Margot

October 2009

2009-11-01T12:06:00.029-06:00

As I said in September, this whole shoe thing is out of control. Every day KP strolls around the house in whatever shoes we have left for him.

KP is at that "kiss it and make it feel better" stage. Mix in some of that 2 year old independence, and this is what you get. KP stubbed his knee, and spent the next 10 minutes trying to kiss it and make it feel better. :)

KP is also an iPhone pro. His newest discovery is Doodlebuddy, which he plays with almost daily. This is one of his many creations. :)

The week before Halloween, KP and I bought his trick or treat pail. It was a close call between Thomas and Elmo, but Thomas won.

And then we visited Mamaw and Papaw. Mamaw put up a tent in the livingroom for KP to play with. We got to hang out with Mamaw, Papaw, Uncle Josh, and Uncle Jam Jam.

On the Friday before Halloween, KP had a trick or treat parade at school. He refused to wear his costume because he wanted to be dressed like his friend, Brady, who was dressed as Nemo. Good thing he had on his ghost shirt.

Checking out Brady's bag -- to make sure that he doesn't also have better stuff on top of having a better costume. :)

Plotting to steal Brady's costume with Travis

We finally got KP into his own costume on Halloween afternoon after much bargaining.

I didn't say he was happy about it.

But he came around

Big Daddy Lion

Together, they make a full costume.

We went to Mimi's for Halloween.

Grandpa Mike and KP

The lions visited G-daddy, too.

G-ma made KP a wonderful treat basket full of grapes, strawberries, cereal bars and teddy grahams! KP was sooo excited!

September

2009-09-03T11:38:00.001-05:00

September was a month full of changing routines. KP started school, and Dylan transitioned back to his 9-5. With all of that, we really didn't take very many pictures this month, but here is what we've got.

This is the beginning of KP's shoe obsession. He loves putting on "Mommy's shoes" and "Daddy's shoes" and walking around the house in them.

In case you were wondering, he is still cute, but now he knows it.

Cheese

We have begun the battle of potty training. This is when KP was experimenting with privacy. We got kicked out. "Mommy out. Daddy out. I'm pooooooping." Okay.

But then he changed his mind and decided that Mommy HAD to be sitting in the bathroom with him to continue. "Mommy - SIT DOWN!"

Daddy has gotten a new job as a horse.

And in case you've ever wondered what it would be like to eat breakfast (or any meal for that matter) with KP, here is a preview.

first day of preschool

2009-09-01T23:11:00.010-05:00

KP started preschool on Monday. Margot will supply details later ... Bachan will post photos.

<

Mommy said I have to brush my teeth & comb my hair before I can go to school

OK... I'm ready to leave

Daddy is taking too long to get ready. I think I'll have to drive myself to school

all smiles and ready to roll...

KP & Daddy in front of the school. The only problem KP had was giving up his truck to Mommy & Daddy :)

birthday party

2009-09-01T22:42:00.016-05:00

This is merely a teaser ... Margot will update the blog with more details when she has time. Bachan flew to Dallas to help KP celebrate his 2nd birthday. Margot & Dylan decided to hold the party at one of KP's favorite restaurants... Chuck E. Cheese. Granddad Lynn, Grandma Sheri, Meemaw, Papaw Stephen & Mimi attended along with Bachan, Mom & Dad. We missed Grandpa Mike (was called in to work) and Mamaw Frances (was under the weather). A good time was had by all ... especially KP. Grandma Sheri was the queen of the token tickets... every time she returned to the table she had a fistful of tickets ... so at the end of the day KP got a cute little lunch box and stuff to go inside. KP never stopped running around - from the time he got there till we ran out of tickets he was having fun. Here are some photos:

KP was flying high thanks to pedal power supplied by Granddad Lynn & others. He must have used 1/2 his tokens on this ride alone. Someone's arm was probably sore the next day.

now he's driving with his friend Barney ... not nearly as fun as the helicopter

KP steering the car along the track ... there's starting to be a theme here...

KP finally was convinced to put down the truck that Granddad Lynn & Grandma Sheri gave him and open a second present.

And Meemaw gave KP a bright red car!

Bachan didn't get a photo of the nifty biker jacket given to KP by Mamaw Frances & Papaw Stephen... I think Dylan took one. Also not included here are the kid-sized John Deere tractor or the Harley Davidson trike... both are soooo cute.

August

2009-08-28T11:15:00.002-05:00

At the beginning of August, KP decided it was time to run away from home. :)

He didn't get very far.

We spent most of the summer trying to avoid the mosquitos and the heat at the spraygrounds in Richardson.

KP always has a great time.

We also went back to G-daddy's to play on the tractor some more.

G-daddy was nice enough to share his tractor, too. :)

KP is learning the difference between left and right. :)

Cruising

Whew

So, one day, we went to Central Market to play on the playground. While we were there, KP wanted to go up into the fort and down the slides. I found this little lilly pad type setup, and took a minute to show him how to go up them. Within about 5 minutes, he was scaling the lilly pads in less than 10 seconds, running over to the slide, going down the slide, and then running back to do it all over again.

Under the fort

Back to G-Daddy's. KP has now gotten very good at driving his tractor, and very bossy, too. :)

Pit stop.

KP conned Uncle Wowie into giving him a ride on the big tractor

Whew. This is hard work!

KP and G-ma. :)

Daddy and KP

KP and Mimi

Kisses!!

Meemaw!!!

Meemaw and KP

Dylan and Meemaw

KP woke up and decided that he wanted chips and salsa for breakfast. No joke. He had me open the refrigerator, pointed at the salsa, and said "chips please".

Toward the end of the month, KP and Daddy went to the zoo. Our zoo membership is another thing that has saved us this summer with keeping KP occupied.

Sliding. :)

KP has also been working on his gymnastics. It's funny to think that he was a bit unsure on his feet at this time last year.

July - In review

2009-08-02T10:08:00.042-05:00

On July 17, KP decided to gather multiple treasures from around the house to share with Goose. I see it more as evidence of all the different rooms that he has raided.

At the end of July, Dylan was recognized by our corporate office as a finalist for the Chairman's Photographic Award in Minneapolis.

While Dylan was gone, Bachan came down to help with KP, and to watch him when I went up to Minneapolis to meet Dylan. While I was still in town we went to the zoo, and KP discovered the joy of puddles.

On Saturday, KP got to visit G-Daddy Lynn and G-ma Sheri, and had quite a surprise waiting for him.

KP also discovered the joy of Chuck E. Cheese after he and Bachan picked us up from the airport

The next morning we discovered a visitor by our backdoor and thought it would be fun to bring him in for KP to examine. KP thought it was kind of neat, and got really interested around the time that it decided to jump out of the tupperware and hop under the stove.

KP decided to ham it up for us after breakfast

Fish face! :)

All of that fun just wore KP out.

At the end of the month, KP had a run in with a few mosquitos. This pretty much sums up our summer -- the battle between KP and the mosquitos. I'm pretty sure KP lost.

Scottish Rite, Bachan, etc.

2009-07-17T20:16:00.000-05:00

On Tuesday, we went to Scottish Rite for our yearly evaluation. Here is an excerpt from our post about our visit last year, and what our diagnosis was when we left:

"He has Thumb Hypoplasia. On the Blauth Classification, his right thumb is a 3A, and his left thumb is a 2. They are also concerned about the length of his radius and some possible missing cartilage under his thumb area."

Things have not changed much. At this point, the doctor believes that we may only need to operate on the right thumb, and the left thumb may work just fine as-is. And again, they want to wait until next year when he is a little older.

At this point, since it does not seem to be a question of if we are doing the surgery, but only of when, we are seeking out a second opinion. I think it will be much easier to do this surgery to a 2 year old than a 4 year old.

We did find out some more information on what the surgery entails. They will lengthen the space between his thumb and forefinger, as well as stretch some of the tendons to give him more control. They will also split the short muscle from his ring finger, and bring it over to his thumb to give him a stronger pincer grip. He will wear a cast for about 6 weeks after the procedure, and there will be some pins involved to strengthen the thumb.

The good news is that his forearms have grown perfectly, and there will be no need to lengthen them. Whew.

Daddy is flying to Minneapolis on Sunday morning early to accept at least 2 awards -- we're hoping it will be three, but we won't find that out until Friday.

Bachan is flying in on Sunday midmorning. So, we will be doing lots of to and from the airport on Sunday...maybe we'll hit a splashpark in between. :)

Bachan is going to hang out with KP and me until Wednesday, when I fly up to Minneapolis to **hopefully** watch Dylan receive his third award. :)

We will both come back on Saturday afternoon, so Bachan, KP and Goose will be hanging out Wednesday-Saturday. I hope the house is still standing when we get back. :)

Needless to say, we are all running around like crazy people trying to get ready for the busy week ahead.

Cross your fingers for Dylan and we'll see you next week. :) Hopefully Bachan will update the blog while she's here. That's why I did crazy updates tonight - just so things would stay in chronological order. :)

xoxo
Margot

Pool time!!

2009-07-12T19:55:00.001-05:00

Last weekend we got to go play with Mimi and Grandpa Mike at the pool. We remembered the sunscreen and earplugs for KP, but forgot it for us (or maybe were hoping for a tan) -- notice the progression of red. :) KP even went underwater a few times and seemed to love every minute of it.

It's hard to tell who had the best time. I think we all did. :)

July 4th Weekend

2009-07-06T19:53:00.000-05:00

Everyone was off of work for the July 3rd and 4th, so we took advantage of having all of us at home for such a long time.

On Friday, July 3, we went to the Zoo. :) We tried the monorail for the first time -- I don't think we'll be doing that again. Too bad it doesn't look more like a train -- KP loves trains, but he was NOT digging the monorail.

KP with his new shades :)

Even the lemurs were hot -- and it was 9 am!!

The penguins were the coolest!! We have great videos of them swooping underwater. We were lucky enough to be there at feeding time. We would go back to the zoo just for the penguins -- I just wish their exhibit were a bit larger (also because they have misters :) )

Amazingly enough, this is not a zebra -- no stripes on the belly.

I SO want this waterfall!!

This is where the pelicans tried to eat us.

This is what pelicans look like when they are saying "who? us?"

This is KP trying to match his face to his shirt on the monorail.

Meerkats!!! (Just for Daddy)

Don't ask. I have no idea.

This is the cutest little guy. Because he is so cute, I bet he would eat a small child if given the chance.

Mimi was nice enough to watch KP on the 4th. They went out to Mario and Ashley's for a cookout, and reported back that they had a great time. :)

Since we were kiddo free, Mommy and Daddy got to go visit some friends up in the middle of nowhere and set off fireworks. :)

On Sunday, July 5, we went to Grandad Lynn and Grandma Sheri's. We were too busy eating to take too many pictures, but it was nice to hang out with the family.

KP found the stash of whole wheat cheerios and dug in with Grandma. :)

When KP woke up from his nap, you'll never guess where he wanted to go....

We had a great weekend! Friends and family, what more can you ask for?

xoxo
Margot

Welcome, July :)

2009-07-02T19:29:00.001-05:00

KP discovered a new place to "hang out". And, of course, instead of scolding him or putting him in time-out, Daddy took pictures.

He is also getting wayyy more talented on his slide. This is a picture of him walking up the slide backwards.

xoxo
Margot

June comes to an end...

2009-07-01T19:24:00.000-05:00

One of KP's favorite activities in the morning is skyping with Bachan and Jichan.

Whenever I am at the computer in the morning, he climbs up in the chair with me and points at the Skype icon and says "chan -- chan". :) Sometimes we can get them, and sometimes we can't.

This picture was taken because KP wanted to show off his "cheese", otherwise known as Mommy's camera. :)

We also went to the spraygrounds -- again. I think that 2009 will be remembered for us as the year of the sprayground. It has become a regular stop for us -- so much so that we keep swim trunks in the car just in case we have a little bit of time to kill.

xoxo
Margot

Spraygrounds!!!

2009-06-29T10:36:00.004-05:00

We went to the Spraygrounds this weekend and had a great time. KP loves running through the water and splashing and dancing. :)

We went last year, and he liked it then, but you had to really walk him through all of the fun stuff. This year he was doing pretty well on his own. :)

But, before we get to the pictures and videos (yes, there are both). I was digging through our blog from last year because I wanted to see if we had posted pictures of him at the spraygrounds from last year to compare. Instead I found something that puts everything into perspective. One year ago, on June 11, 2008, KP had his colostomy reversal done. As we reach these milestones, it is so hard for me to believe that changing ostomy bags was such a huge part of our life for what seemed like so long, and now I can barely remember it. So much can change in just a year! A year ago we were up to our ears in ostomy bags, and then all of the different pastes that followed his reversal, and now we are on a potty training track -- somewhere we never thought we would be. And it has all happened in the blink of an eye. Wow.

Okay, enough of my blabber, here are the pictures. :)

And the rest of the videos are too big to post. Sorry, guys.

xoxo

Margot

And then...

2009-06-22T19:19:00.002-05:00

Bachan got KP a computer for Christmas this last year, and it has been growing with him ever since. At first, we had to boot it up for him, and get his programs started and he thought it was fun to hit the keys and cause the computer to make sounds.

Now, he unplugs the computer and brings it into the living room, opens it up, turns it on, and plays on his own with it. When he's done, we have to shut it down for him, but then he takes it back to where it belongs and plugs it in. :) Such a cute boy.

"Cheese". Dylan and KP have been working on that. See the nice smile above? Well, they may have been working on it too hard. When they got home from running around today, KP started pointing at my camera and saying "cheese, cheese". So, I turned it on and took a picture, and he kept asking for more. So, since I never post enough pictures, here they are (again, unedited...these are about 10 minutes old).

And there were actually more. :) And I tried to put down the camera between each shot, and every time he kept saying "more, more". He's not the child of a photographer. No way. :)

xoxo

Margot

Anniversary/Father's Day 2009

2009-06-22T19:02:00.004-05:00

As soon as we got back from California, it was time for me to get to work on our Studio remodel, and then get everything ready for the new season to start. We had our first open week last week, and I think things will go very well this year. But, it means that we have not had much time for anything, and this month has gone by in a blur. :) However, we DID take a break for our Anniversary/Father's Day Weekend.

Saturday was the 3rd anniversary of our wedding. I had to work, so Dylan and KP hung out at the house for most of the day. But, as a present to ourselves, we brought KP into the studio to take some pictures at the end of the day. These pictures are unedited, and you know how much that kills me, but I just don't have time to edit them, and I thought that it would be better to get them up than have them perfect in my computer.

Sunday was Father's Day. At the last minute, we decided to have a BBQ at our house. So, we cooked burgers out on the grill and hung out at the house.

After everyone left, all of my boys were exhausted and passed out...

xoxo

Margot

California - Memorial Day Weekend 2009

2009-06-22T18:04:00.006-05:00

Jessica and Aidan came back to the states from Japan for a little while, so we decided to go visit them in California. Since they flew 14-hours to get stateside, we thought we could surely fly 4 to visit them....just me and KP...

KP threw 3 tantrums, and did not take a nap on the flight into SFO. I have never been so happy to get off a plane --

Of course, once we got off the plane, psycho KP was nowhere to be found, and sweet helpful boy returned.

And then he promptly fell asleep in the car before we really even got out of the BART parking lot.

On Saturday morning, KP woke up and started his chores (Bachan is a slavedriver :) )

When he got tired of working, he threatened Bachan with a letter opener until he got some grub. :)

So she pulled up his table and gave him breakfast. :)

Then we went to meet Aunt Jess and Aidan at the SFO Zoo...where psycho returned, and KP put on quite a show for the meerkats and prairie dogs. But then he made friends with a goat, and all was well.

Who had other goat friends...

And then there was a bear...

But KP was not impressed...

There were a lot of babies at the zoo. The giraffes and the gorillas both had new little ones out to play.

On Sunday morning, we got up and got ready to do it all again. :)

We met Aunt Jessica and Aidan at the Oakland Zoo. There were huge tortoises there.

And KP decided that he needed to push his stroller around the zoo all by himself

There was also a fun little play area for the boys to run around in.

Then we went to the petting zoo, where KP saw goats just like the ones at the SFO zoo, and he ran up to them like they were old friends. :) KP also got his hands on the video camera, and wanted everyone to see the petting zoo from his point of view...

When we left the zoo, we went to go visit Jichan's family in Vallejo. Bachan always makes fun of Texas and our lack of 4 actual seasons, so here is some insight into California weather. It was so cold in Oakland, that KP was bundled up tight as we went through the zoo. Jess had to add another sweatshirt on top of what she was already bundled up in, and Aidan had his stroller blanket on. We drove to Vallejo, and I had to strip KP down to short sleeves, and he still ended up all red-cheeked. Yep. But, we have the weird weather, right? :)

Once we got to Vallejo, KP went straight for Jichan

He warmed up to everyone else as time went on, and adopted Keith as his best buddy while he was there (going up the stairs, and down the stairs, up the stairs, and down the stairs...)

While KP was getting his aerobic workout, Jess and I went down by the Cliff House and had dinner. I cannot remember the name of the place that we went, but it was cute, and the food was good.

Monday was our last full day in SFO, so Jess and I went out on our own and hung out at the Ferry Building.

While we were off being moms without kids, Bachan and Jichan took KP back to Tilden to feed the animals at the farm and to ride the train.

And then it was time for us to go home.

We had a very pleasant flight home. KP only screamed continuously for the last 2.5 hours of the flight. At least we got to meet our wonderful seat neighbors who offered us medicine, oreos, and play-doh (all from different neighbors) to try to make him happy. And then, as we drifted into our landing, he fell asleep...and stayed asleep until the entire plane was empty and I had no choice but to wake him up and take him off the plane.

xoxo

Margot

May Update

2009-06-22T17:53:00.002-05:00

One of our friends that we follow will often post many blogs at one time when they each deal with a different event that has happened since the last time he updated. I think I'm going to begin doing the same. It seems to help keep the blogs organized better, and since I can't seem to get on here more than once a month, it will also make it seem (numbers wise anyhow) like I update more often. :)

When we last met, we had just been released from the hospital from KPs aortopexy, and we were cautiously optimistic on how it went. I will have to say that I (as a complete non-doctor) think that it has been a success. I recently had to share a bed with KP, and had to keep checking on him to make sure he was breathing. It is like having a newborn again. Before his surgery, you could hear him breathing across the room. And, it seems that he doesn't snore anymore. Now if I can just get him to stop grinding his teeth....

Mother's Day came and went in our house. KP had not been home from the hospital long, so we were not able to do much, but there was time for a wonderful cake. :)

KP also got to spend some time with his Grandpa Mike at the park. KP has a love/hate relationship with swings. But, anything to hang out with Grandpa Mike. :)

Daddy took KP to Toys 'R' Us, which has become his favorite play place. :) He hasn't discovered that some people get to take the toys HOME. :) Once he discovers that, we'll probably never go back. :) But for now....

At the end of May, KP and I went to California to visit Aunt Jessica and Bachan, but that will be the next post. :)

xoxo

Margot

KP's hospital stay

2009-05-07T19:49:00.009-05:00

Here's some photos to go along with the narrative of Everett's May 2009 surgery for those of you who are not on Facebook.

Here's KP enjoying himself in the play area before surgery. He didn't eat anything that morning so it's a good thing he doesn't know what a taco is..

Here's Mr. Man after he was taken to his room after surgery.

First meal .... don't bother me, I'm drinking (and Dad, don't look so worried, I'm fine)

KP and his favorite puppy (good thing he has 4 of them)

KP with his buddies - puppy & Paul

He was released after 2 nights in Pediatric ICU. We thought he might have to go to the general floor for one night, but Dr. Renard sprung him after his X-ray came back OK. KP was a happy camper. Reports were that when the nurse came in with the release papers, he started jumping up and down in his bed, squealing and clapping his hands. Once he was on the floor he was marching around with the formula can on his head... ready to go home.

Aortopexy 5/5 & 5/6 Update

2009-05-06T17:46:00.002-05:00

We went in for the aortopexy yesterday (Happy Cinco de Mayo and Boys' Day everyone).

We got to the hospital around 7 a.m. Since we went in for pre-op on Monday, we got to go straight up to day surgery. They were super nice, and recognized us right away (you know, since this is becoming a habit for us). They quickly took KP's vitals and then let him dissapear to the playroom while I finished up his history with them.

They got some new toys in the playroom that KP really enjoyed. I will update this post later with those pictures once I get them off of Dylan's phone. They had a new microwave for the kitchen, and some push toys that we haven't seen before.

Papaw and Uncle Jack got to come visit in the playroom for a short while. KP was a little apprehensive at first, but warmed up pretty quickly.

Around 830am the nurse came and got us to go down to the holding area. KP gave everyone hugs and kisses and then held on for his ride in the elevator. We made quite the little parade. :)

We dropped Papaw and Uncle Jack off in the waiting room and KP and I went on to holding. We got KP's favorite nurse there, so he spent most of his time flirting...as usual. :)

His general surgeon came down and talked a bit about the procedure, and that's when we found out it would probably take a couple of hours. I've been spoiled by our 30 minute procedures lately, and forgot what a full blown surgery entails. Whoops.

They took him to the OR around 930am, and we all went down to the cafeteria for breakfast. Dylan joined us again upstairs in the waiting room around 11.

Around noon, the OR nurse came out and said that KP was stable and doing nicely. He seems to have found KP absolutely fascinating, and also seemed to have a lot to say, but never really said it. We left that conversation very confused, so we just focused on "stable". :)

They finally stitched him up around 130pm, and KP's doctor came out and talked to us. It appears that the operation went well, and we will be just waiting to see if it has the intended effect.

They admitted KP into the ICU, and we finally got to see him around 3pm. He was fussy, but medicated by the time we got in there. The nurses said that he tried to flip over when he first got to them...yep, that's our boy.

He ended yesterday, calm and asleep with an arterial line, chest tube, i.v., foley catheter, and chest tube all in place (not to mention the usual leads).

On the nurse's suggestion, Dylan and I went home for some rest since we knew that today would be a long day.

This morning they told us that KP threw up in the middle of the night, so we knew he was ready for liquids. He drank almost 20 oz of liquids this morning!! He was sooo hungry! After putting all of that away, they dialed down his iv, and eventually capped it off. There were rumors that we would be moved to the general floor today, so they went ahead and took out his foley cath and arterial line.

He was signing this morning and flirting like crazy with the cute TL nurse that came to check on him. :) He took a nap midday, and then woke up and downed another 12 oz. So, they let him have some solid food.

Unfortunately, even thought his oxygen levels were staying high, he was still retracting a lot while trying to breathe, so the decision was made to keep him in the ICU another night. We love the ICU because we get so spoiled there, but it means that he is not doing as well as expected, so it is bittersweet news.

So, at the end of today he just has the i.v. (which is capped, but will not be taken out until the discharge papers are signed), and his chest tube (which may come out tomorrow) left. I love watching the tubes drop off. I think that is still my favorite part of recovery.

He let us hold him a couple of times today, and he and Paul played for a while. Dylan sent a text saying that Paul now had his leads on thanks to Dr. Everett. :) I guess he was up to his old tricks.

I will try to update more tomorrow. Don't forget to follow us on facebook. I will update his status more regularly on there.

xoxo
Margot

Aortopexy

2009-04-28T20:49:00.002-05:00

Quick update. No pictures.

We went to see our general surgeon today. As always, I was composing my thank you letter to him in my head as I got KP ready to go to the appointment. Whenever he is doing particularly well with his dilations, I always compose this letter to our surgeon in my head with the hopes that he will tell us "well done" and decide to see us only as we see fit.

I planned to pack up all of the dilators and take them with us so that I could turn them into him. We were running late, so I didn't have a chance to pack them up. That should have been my first sign. As we were walking up to the doors, I was thinking about how I would laugh and tell the doctor about how I had meant to pack them all up, but left them at home, but I would drop them by later on in the week. You know, since we would not be seeing him again.

Not so fast.

KP did not burst into tears at the sight of him like he usually does. He did not like being checked (would you?), but he got over it quickly. The doctor was pleased with his progress and said that he could see a marked improvement over last month....

...but thinks that we should continue the dilations at the same frequency for a bit longer to make sure that the scar tissue does not reassert itself and begin closing things up again. :(

And then...

We scheduled an aortopexy for next week.

What is an aortopexy you ask? An aortopexy involves stitching KP's aorta to his sternum. Yes, ladies and gentlemen. We are stitching KP's aorta to his sternum.

Why would we do such a thing? The aorta is attached to the trachea, and by stitching it to KP's sternum, it allows it to create some space of its own that it does not have to share with the esophagus. The trachea does not like to share space, and this will give it some "breathing room". HA! I couldn't resist.

Anyhow. Happy Cinco de Mayo, folks. KP will be going in for surgery at 9am. We go in for pre-op on the 4th, and then surgery on the 5th. He will be going straight to the PICU. Our hopes are that he will be able to make it without a chest tube, but he is KP, so....

It is expected that he may remain in the hospital for a couple of days. Hopefully just one night in the PICU, and then on to the general floor. I'm actually okay with being discharged directly from the PICU, because I actually get some sanity when he is there, but I'm not sure that is in the cards either.

I know that I have been glib in this post, but you know how my defense mechanisms work, and right now they are at their highest. I am scared out of my mind about this procedure. Many of you know that I have been putting this exact procedure off since I first heard about it when he was 3 months old. We put him on a CPAP, we took out his tonsils and his adenoids, and nothing is helping. So, here we are. And this one is a doozy. Don't let me dance around this in such a way that I have not made that clear. This one is serious, folks. And I am scared.

For all of you that do, please continue to pray for us. We need it more than ever.

xoxo

Margot

To the Zoo

2009-04-27T10:25:00.004-05:00

Yesterday we made our way to the Dallas Zoo. Our original intent was to ride the DART rail from our house to the zoo. The DART rail drops off right at the entrance of the zoo, and you don't have to pay for parking (or deal with Dallas traffic). However, we only made it as far as Cityplace before we decided that maybe KP just wasn't ready to ride the rail just yet. He kept wanting to run around while it was moving which would have been a very bad thing. So, we went one station back, and I left KP and Dylan at Mockingbird Station to play outside while I went back to get the van and pick them up.

KP was so happy to be back in the car, and not on the train.

Once we finally made it to the Zoo, we went straight to the Children's Zoo. I haven't been to the zoo since I was in high school, so a LOT has changed since then. Also, I sure wasn't interested in the children's part of the zoo then, so it was worth checking out now.

They have a great little stream that kids can play in. There were a bunch of kids running around in swimsuits just getting soaked and having a blast even in the less than stellar weather that we had yesterday.

We checked out the Discovery House where KP found a tree that he liked to hide in, and went to The Farm where there were horses, rabbits, guinea pigs, and actual pigs. KP found the sink and repeatedly washed his hands...ocd at its best. :)

Outside of The Farm, there was a little lamb statue the KP decided was just his size, and perfect for riding.

We tried putting him in a saddle earlier, and he was very uninterested, so it was nice to see that he found something "his size". :)

Then it was off to the Underzone. KP and Dylan went crawling around discovering underground habitats...and who knows what else they picked up from inside that tunnel. Dylan came out begging for hand sanitizer. :)

KP also had fun discovering the Koi pond. We didn't let him play with them at the Japanese Gardens, so we thought he would have fun with them at the Zoo...that kept him entertained for about 30 seconds.

After the Children's Zoo, we did a quick tour of Zoo North. As always, we were running behind yesterday, and the DART detour didn't help any, so we decided to only hit half of the zoo, and chose Zoo North because it was right by the Children's Zoo.

We visited the monkeys first, and wouldn't you know, the very first monkey had a unique greeting for us.

We made it through the monkeys, and then went on to visit some of the larger animals - tigers, giraffes, and elephants.

We also got to see where the butterflies will be starting next weekend. It looks like it will be a nice little place. KP loves butterflies, so we are looking forward to bringing him back there.

We went to see the reptiles, because of course, every little boy should be fascinated by reptiles. He wasn't. But maybe he'll grow into it. :) Mommy and Daddy were sure interested, though.

As always, we had a fun filled day. On our way out, we bought a membership that gives us free admission and parking for a year. I definitely think we will be coming back over the summer so that KP can burn off some of his pent up energy in the stream. :)

After we left the zoo, we stopped by Grandad Lynn and Grandma Sheri's to say hi and burn off some extra KP energy. He got to run around in the backyard and play with shovels and rocks. :) He even gave the tractor a hug.

Fun times. Next Sunday we're thinking of checking out the Cottonwood Arts Festival. The park is fairly small, and on a typical good-weather weekend day it is packed, so I'm not quite sure how successful this will be, but I figure it is worth a shot...unless anyone has any better ideas. Maybe we'll go back to the zoo again for the opening weekend of the butterflies.

xoxo

Margot

Fort Worth Botanical Gardens

2009-04-25T13:01:00.002-05:00

To continue...

Last Sunday, we went to the Fort Worth Botanical Gardens. They were having their Spring Festival at the Japanese Gardens. We got a late start, but KP was well rested and behaved himself on the ride out there.

We only got to spend about an hour inside the Japanese Gardens, but we had a great time. KP loved the drums! You could hear them through the entire garden, and then we sat down to watch them play, and KP started clapping with everyone else when they were done. :) That is a new skill of his.

We used the Ergo Baby Carrier in earnest for the first time. We have tried it a few times at the grocery store before, but there have always been too many distractions. At the Gardens, KP stayed in it for over an hour without fussing. He even stayed in it when we sat down to watch the drummers. The only time he tried to get out was when the fish started fighting over food - I think he just wanted to play with them. :) This makes me hopeful for our solo flight out to California at the end of May. I'm really counting on him being okay in the carrier.

After we were done with the Japanese Gardens, we toured around the Botanical Gardens and let KP run around a bit to burn off some of his energy since he was such a good boy while we were inside.

Since we ran late getting to the festival, we didn't have a chance to eat while we were there. We figured while we were out and about, we would try a new restaurant on that side of town. This led to a bit of an adventure trying to find a restaurant in that part of Ft. Worth that was open at 6:00 on a Sunday. We finally found Hui Chan Sushi, which we had actually seen at the festival.

KP decided that he wanted to try his hand at using chopsticks, so he stole Dylan's and went to town.

Okay, sure they were upside down, but still a pretty neat trick for a 19-month old. :) Our waitress saw him struggling, and brought him a pair of cheater chopsticks. He needed help with using those, and he did not think they were nearly as much fun! What can I say? He's an independent little guy, and I think he could tell that they were the "easy" way out. :)

Our Sunday outings are becoming more and more fun. And, the more that we do them, the better KP is behaving, which makes us more excited to do them some more. We are hoping to get out to the Dallas Zoo tomorrow, but we also need to get some Spring cleaning done, and it looks like it may rain. We'll see what happens. Either way, I'm sure we'll make it into a fun day for the whole family. :)

xoxo
Margot

Easter

2009-04-24T15:03:00.003-05:00

I realized that I have not updated in two weeks, which is not strange in and of itself. As you know, I often go weeks, sometimes months without updating. But it is bad this time because we actually have had a lot going on and I have lots of pictures. I am only putting a few pictures on here, but there are many, many more on facebook. I have added a link to my facebook on the left. Included are some recent pictures that have been uploaded. Please feel free to request me as a friend and receive regular updates with photos via facebook. Also, there is an automatic feed from this blog directly into my notes on facebook, so you can easily follow us from just one place. At this point, I am keeping this blog active because it makes it easier to print whenever I get around to updating KP's book, and I know that everyone is not willing to join facebook, but still wants to know what is going on with our little man. We greatly appreciate your support.

So, on with the updates. As you know, Bachan came in town right before Easter. We planned a wonderful Easter dinner, and she and I drove to Grandview to pick up organic ham, lamb, and sausage (and some more dog bones for Goose). I have to tell you, this is the second order that we have placed through Burgundy Pasture Beef. We had the last order delivered to our house, and the meat was wonderful, and the delivery was as promised. We had just ordered some ground beef for KP, and some organs and bones for Goose in that order since we were just trying them out. Well, this time we got a leg of lamb, a nice sized pasture-fed ham, and some sausage. I was very pleased with the quality of the meat, and feel that we have now sampled a good variety of what they have to offer. As many of you know, I only order online because I don't actually like talking to real people, but I have talked to them a couple of times, the first to confirm the delivery, and the second to confirm that our order would be ready for pick-up. Both times, they were super friendly and helpful. I am a big supporter of eating organic and buying local, and so I feel that buying from places like this is important. So, if you find yourself interested, but not quite sure about the 10lb minimum (for delivery), let me know what you would like, and I will be more than happy to add it to our next order.

On Saturday, we packed everyone up in the car and drove out to Granbury to see Mamaw, Papaw, Uncle Josh, Uncle Jam Jam and Josiah. Yep, pretty full house out there in Granbury. We stayed at The Plantation Inn out of everyone's way. :)

Unfortunately, Uncle Jam Jam had to work most of the weekend, but we did get to spend some time with Uncle Josh and Cousin Josiah.

We went out on the boat, and KP got to drive. :) I stood up from taking pictures of KP and Papaw and realized that the boat was traveling in circles in the middle of the lake -- because KP was the only one steering! :) He had SO much fun with that.

Sunday was forecasted to be a dreary day, and Uncle Jam Jam had to work that afternoon, so we had our Easter Egg Hunt inside. It was so much fun! KP and Josiah did such a good job finding their eggs that their dads had hidden...just a note to you moms out there -- don't let the dads hide the eggs.

Anyhow, by the end of the hunt, Josiah figured out that there was food inside the eggs, and KP got bored and started dumping all of his eggs into Josiah's basket -- which turned out to be just fine with Josiah. :)

We also gave them some books and bubbles for Easter, and the boys had fun playing with them. Josiah is a big boy and was able to blow lots of bubbles. KP kept putting the wand up to his nose and getting mad because nothing was happening. :) We'll work on that. He just doesn't get the concept of blowing yet. :)

Then, on Sunday afternoon, we got a real treat, and Uncle Chris and Aunt Edith were able to come out for dinner. They brought their brand new Maltese, Keysa, which is the most adorable little puppy you have ever seen. And so sweet, too. So, the boys got to play with her, too. They all shared a love of toy cars. :)

Dinner was delicious. Even the boys (big and small) tried some of the lamb. The little ones liked it, I'm not sure about the big ones. :) It was so nice being able to feed KP directly from the table like we do at home since we planned the meal based on what foods he could eat and made sure that everything was organic. It really added to the family atmosphere (and it made for less tantrums on his part). :)

We were able to get a family picture before everyone had to go home, and all in all, we had a great Easter weekend.

xoxo
Margot

Whew...

2009-04-06T20:18:00.002-05:00

We've had a busy weekend here at Casa Aishiteru.

We were planning on going to the Arboretum on Sunday afternoon because this is the last weekend that we would be able to see Dallas Blooms (since we'll be in Granbury next weekend). However, I didn't check the weather before we were on our way. I just assumed that the day was going to warm up like every other day did last week. I was wrong and it actually cooled off from the morning and the wind came blowing in. So, we had a pleasant change of plans. :)

We got to go visit Grandad and Grandma, and see Grandad's new office which is rather spiffy. :)

Then we went to Aunt Cindy's beautiful garden to take some pictures. We have realized of late that we have fallen down on taking pictures of our handsome little man, and thought it was about time that we rectify that.

So, without any further delay, here are our April pictures. Sorry about the slideshow, there are just too many. As always, you can click on the slideshow to see the pictures one at a time.

We had our mini doctor marathon today. KP had his delayed 18-month checkup (he was sick at 18-months, so we pushed it to 19). He is back on his growth arc again. 30th percentile and height/weight proportionate. Yay. :) (of course his big head is still 56th percentile, but at least that's down from 86th where it used to hang out.) His doctor is extremely impressed with his progress. I love our pediatrician, by the way. We purposely selected a young pediatrician, because we wanted someone that would grow with our family, and not be in danger of them retiring partway through our lives. We have been so blessed. KP loves him, and he is so knowledgeable about all things KP. :) And, he is laid back like us, and understands things like why we have discontinued feeding therapy for right now. It is nice to have a doctor like that. Actually, we have been blessed with most of our doctors being like that. They understand that KP has been through a lot and don't try to subject him to things for a "maybe".

Anyhow, then it was off to the ear doctor. We got a clean bill of health there. He said his ears look great, and send us over to see the audiologist for a follow up from having the tubes put in. We did a behavioral test this time instead of an ABR, and it looks like we are back to normal in the right ear. Whew. It was only the fluid that was causing the loss that we saw on the last ABR. He is still deaf as can be in the left ear, but at least the right ear is behaving as it should now.

We actually had a very nice day today. Which is not always the case when we have so many doctor appointments. Usually, KP gets cranky or restless. But he conducted himself like a genuine big boy all day today and I was very proud of him.

KP's potty doll came in today. His name is Paul. :) And already I can see the benefit of such a doll and I wonder why I didn't think of doing this before. As soon as I took him out of the box, I took him and his potty into the bathroom and showed KP, "see, Paul is sitting on his potty". So, KP sat on his...with clothes on. Hey, we're just working on concepts right now. So, when KP tried to get up, I told him "hang on, Paul isn't done yet". And he sat back down. Then, when I tried to pick Paul up, KP pushed him back down. I guess he wasn't done yet. :) When they were done, KP carried Paul up his stepstool to the sink and washed and dried Paul's hands (and then I washed his, of course). :) It has been so cute. Naptime was a breeze with Paul. So, yes, my little man has a doll. Get over it. :)

Bachan is arriving on Wednesday, as well as Josiah. We're heading to Grandview on Friday to pick up the meat for Easter, and then to Granbury on Saturday. KP will get to participate in his first Easter egg hunt, and we are super excited! I think we need to buy more memory before next weekend...especially since we used up 2G just in Cindy's backyard for an hour. :)

xoxo

Margot

Spring Break 2009

2009-03-24T09:44:00.006-05:00

I have updated our Casa Aishiteru Blog with our Spring Break project outcomes. I don't want to take up a lot of space here with all of that.

KP is becoming such a big boy. He is becoming more independent and wanting to do many things on his own and gets very upset when we try to help him. I have been racking my brain trying to figure out how to make that easier, but aside from installing a low sink for him, I was at a loss. Then, we left a stepstool out in the bedroom while we were working on it, and KP came in and climbed right up. It is a good, sturdy stool so....

KP is also more picky about his snacks. He knows exactly what he wants. We have been out of his mommy approved whole wheat organic bunny snacks for a while because our usual grocer stopped carrying them. But a quick trip to the Vitamin Grocer revealed a new source. Yay. And although KP has not had them in a few months, he recognized the box. And one morning managed to knock the box off the counter and bring it in to me so that I would give him some. Which ended up keeping him occupied for a while as he came and grabbed handfuls at a time. But, when that got to be too much, he wanted me to lay them out in his fort for him so he could stay still and snack:
Dylan has been playing guitar hero with KP lately, so on this particular morning, I went into the living room to find KP trying to plug his guitar into the PS2. So, I plugged it in for him, and he was satisfied for quite a while. Dylan got quite a treat also, when I went to wake him up so that he could play guitar hero with KP. :)

Those are the pictures I have right now. I will try to do better. If you are starved for pics, find me on facebook. I update there MUCH more often than I do here because the interface is just so much easier (and I can do it 100% from my phone).

Now that I have supplied the obligatory pictures, I can go into the details of what is going on with KP.

He's still been sick this last week. I think that something is going on related to his adenoidectomy, because he really hasn't been quite right since then. We went to the doctor yesterday and they said he seemed to have a sinus infection and gave us an antibiotic. This would make sense since we had to stop his last antibiotic prematurely because he kept vomiting. Hopefully this was the issue and all will be well. If it doesn't help we will be adding Zyrtec to his regular medications. That means that he will be on 3 allergy meds. Can you see why I am not convinced and am looking into alternatives?

On to the big news (things get kind of medical here, so if you want to, you can skip to the bottom where the summary is in bold):

Around the time of KPs surgery, he was not able to take his miralax, and he went an entire day without having a bowel movement, and then through a complete accident, he got a double dose of miralax that evening (I gave him his dose at 4pm, Dylan gave him his dose at 6pm -whoops). That resulted in a full emptying of his bowels...all over him, the bed and the floor. But, that got me thinking.

So, we have added a probiotic to his diet 2x daily, and have reduced his miralax to about 1.5 dose once a day. We are currently adjusting the amount and the time of the miralax so that it will result in a full emptying of his bowels, but it looks good so far.

That prompted me to do some more research. As many of you know, we have not been hopeful about KPs prognosis for continence later on in life. We have been thinking that one of our only options would be the Malone (appendicostomy) done around the age of 4 for him. The malone creates a surgical opening at the top of the veriform appendix to aid in irrigating the bowel. This would keep him "socially clean".

But now I don't know. I went over a lot of the research that I had done previously, that didn't apply to us at the time because he was too young to show any of the signs mentioned. It means a lot to me know.

According to Cincy, here are the factors that must be present in order to be fecally continent:

1. "The child needs to have sensation within the rectum. Children born with anorectal malformations lack the intrinsic sensation to feel stool or gas passing through their rectum. Therefore, many times the child may unknowingly soil."

At different stages of his life, KP has always cried prior to passing stool or gas. Now that he is older, he has told us that he needs his diaper changed, for us to find it clean...for about 30 seconds before he starts unloading on the changing table. He has also started to stop playing in order to squat and push.

2. "The child needs to have good motility of the colon. Normally the rectosigmoid remains quiet for periods of 24 to 48 hours, then a massive peristaltic wave allows the complete emptying of it to remain quiet again.

If their rectosigmoid is slow, the stool stays stagnant, hence, constipation occurs and the child may suffer overflow incontinence.

On the other hand, a very active colon may provoke the constant passing of stool which may significantly interfere with bowel continence."

We do not know where we stand here. We know that he has low motility and is prone to constipation, so we walk a very fine line by strictly controlling his diet and keeping the right combination of foods and meds going through his system to improve his outcome. There seems to be some indication that proper control of his diet alone may lead us to a better sense of continence, with minimal medication. Unfortunately, he is not always just with us, and eats whatever people give him now. We will not be able to truly test this theory until he is old enough to communicate what he can and cannot eat to others. Which means he has to be old enough to understand from us why he can eat some things and not others.

3. "The child needs to possess good voluntary muscles, or sphincteric mechanism. These muscles allow for good control and retention of stool."

When KP had his spinal surgery in Jan 2008, the neurosurgeon went ahead and tested basically every nerve in his body that he could get his hands on. He tested KPs sphincter and reported that it was functioning properly and all of the nerves were appropriate. That was the very first little glimmer of hope that we got, but we had kind of pushed it aside because we really didn't know what that could mean. Additionally, except for when we crazily medicate him, KP doesn't pass stool at night. He holds it until he wakes up. THAT is huge!

So, armed with this information, I dug a little deeper. One of the methods of determining future continence is by determining the sacral ratio. This is done by evaluating xrays and doing some simple math. Because KP is missing part of his sacrum, we just always assumed that the prognosis would be bad. Our general surgeon has been reluctant to go into detail with us about it, I think because he did not want us to just give up. I think his plan has been to revisit this with us in a couple of years. But, I am impatient, so I looked into it myself...and you'll never believe what I found out.

I have not yet actually calculated KPs SR because as I was researching, I discovered that the worry truly begins if 2 or more sacral vertebrae are missing. KP is only missing one. S5 and his coccyx are gone, and S4 is blunted, but not missing.

Then, I saw what type of defects were most likely to be incontinent. KP had a high defect, so that also seemed to mean that we would not have a good chance. But, upon further research, I discovered that in cases of imperforate anus without a fistula, the prognosis for fecal continence was good. Wow.

Summary:

Okay, so what does this all mean? It means that I am beginning to hope for more than I have any right to hope for. I think that KP has a chance at continence. We have begun keeping logs of everything that he eats, and when he eats, and when he poops, and when we give him what meds.

I think we will start potty training soon. Although they do not recommend potty training IA kids until 3yrs old, I think he is getting ready soon since he watched Scarlett and Alayna go through the process. If it turns out he is not ready, we will wait, but OMG! It could happen! And I am elated!

xoxo

Margot

A walk down memory lane...

2009-03-22T11:10:00.004-05:00

This is a 100% picture post. I have a lot to share, but I'm just doing pictures for this one. I'll post another with information.

These are all of the pictures recently recovered from Dylan's phone, so enjoy our little walk down memory lane. Due to the vast amount available here, we have posted in slideshow form. As always, if you click on the slideshow it will take you to the album where you can view each photo one by one.

Enjoy.

Here are the videos - this will go through the first picture of each video. You can click on the slideshow and pick and choose which ones you want to see.

xoxo

Margot

Long Week

2009-03-07T11:13:00.003-06:00

We were gratefully sprung from the hospital early Tuesday morning. This doctor was really on top of things. Also, it seems that they are changing some things at the hospital, and those seem to be positive changes. It has been so interesting over the past 18 months seeing all of the changes in the hospital. We have been in 4 different holding areas, 3 different waiting rooms, and 3 different recovery rooms. In the next 6-9 months, the pediatric holding area will be complete, and we will get to stop having to relearn the route from one place to another. But, the changes were necessary, and they have been a BIG improvement over what they were before. I just never thought that I would be around to see so many changes in a hospital.

On Wednesday, I piled KP up in the van to make the hour trek to Ft. Worth around 6:30am. We made good time and got to the doctor's office around 7:30...where I then found out that our appointment had been cancelled and our doctor was in Dallas doing clinic. Huh? Yep, someone cancelled our appointment, and no one bothered to call, so we made a nice long drive out to Ft. Worth to hang out for 15 minutes while they straightened it all out and then drive back home. Whoo. So, our appointment is next Wednesday at the same time. I sure am looking forward to making that drive again.

Once we got home, I went to go change KPs diaper, and there was poop on his shoe. It looks like the antibiotic they had him on was causing a major case of the runs. KP ended up having 3 baths and going through 4 pairs of pants that day.

By Thursday, his status had not improved. So, we changed his appointment on Friday to a sick appointment. He woke up Friday morning throwing up and was unable to keep even the tiniest bit of pedialyte down. Dylan had to pull over and change his clothes on his way to the doctor because he threw up on himself on the way there.

His pediatrician called his ENT and we stopped the antibiotic that he was taking with instructions to let him drink no more than 2 oz at 30 min intervals. We could increase the amount once he started keeping some down. That worked beautifully, and KP is now on the mend.

We are hoping that he will feel better by Tuesday so that he can finally start with his new nanny! As always, I have some reservations, but I feel better about this one than his last "care" giver. Of course, we still miss Laura, but hopefully this new arrangement will work out. The best part is that if this one does work out, then we can enroll KP in preschool in the fall and not have to worry about who will pick him up in the middle of the day. Yay. :)

I will try to get some pictures and videos posted soon.
Thanks for checking in.
xoxo
Margot

Surgery Update 03-02-09

2009-03-02T14:48:00.003-06:00

This is an update and a test. I am emailing this post in, so we'll see
how it turns out.

We got to the hospital at 8:30 this morning. We got checked in and then got to go play in the playroom until they were ready for us.

We got called out a little before 10, and were in the OR at 10:44.

Everything went well. The doctors were going back and forth about whether or not we would be stating overnight. We almost got out of it, but the anesthesiologist thought it would be best after surgery.

They did not have to dilate his esophagus, so that is good news. They took a biopsy of the lining and we should know more later.

The tubes went in without any incident. They ended up putting tubes in both ears, and confirmed the presence of fluid in his right ear.

The adenoids also came out without incident. He is just snoring a lot right now. Hopefully this will have cured his sleep apnea once it heals. :)

We were finally admitted into a room on the general respiratory floor in a monitored room so they can keep track of his oxygen levels. KP was watching gabba, but now he is asleep. Which is good because it
appears that our DVD needs to be cleaned very badly.

That is all for now. We should go home tomorrow. We see his craniofacial on Wednesday and his pediatrician on Friday, so we have a packed week ahead of us.

xoxo
Margot

Yet another one...

2009-02-26T11:02:00.003-06:00

KP and I went to see his ear ENT this morning (because he has an ear ENT and a nose/throat ENT...I know, it doesn't make sense to me either) because he had an abnormal ABR on Monday.

It appears that he does have fluid behind his right eardrum. So, our ear ENT is contacting our nose/throat ENT to have him put a tube in KPs right ear. KP has never had an ear infection, but when we talk about his hearing, we are only talking about his right ear, because his left ear is a non-entity. So, they want to be proactive about this, because with the fluid back there it is causing a 30db loss, and we just can't afford that.

So, on Monday, KP will be having: adenoidectomy, esophogeal dilation, and a tube put in his right ear. Anyone else want to get on board?

Poor KP. I think we will be spending the night in the PICU again, because that is how his doctor likes to do it, but it's always possible that he will change his mind and we'll get to go home. The more procedures they add on, the less likely that seems, though.

I'm trying to update more often now, so keep your eye out for more small updates like this one.

xoxo
Margot

Looooong update

2009-02-22T08:53:00.002-06:00

Whew. We've been very busy since the last update. Bachan was nice enough to update the holiday photos. So, that was Christmas/New Year's in California. We had a great time and KP got to play with his cousin and they had lots of fun on the stairs...for hours! :)

When we got back, it was straight back to work, and time to search for a new caregiver. :( Mrs. Laura's last day was February 13th. The slideshow below has some of the pictures that she was kind enough to give us. There are a few more from their Valentine's celebration that just didn't make it on here. She also gave us a few videos that are sooo cute. She was a fabulous caregiver, and we were completely spoiled by her. Now I think our view of all other caretakers will be forever tainted because she has set our expectations so high! So, if you know anyone in Keller that needs a caregiver, I can give a GREAT recommendation! :) We will miss Mrs. Laura A LOT! The really cute thing is I have shown KP these pictures, and asked him where each kid is and he smiles and points to them. :) It's pretty cute.

Anyhow, once we got back we also got to play the doctor game again. Once the craniofacial doctor and the ENT talked doctor to each other, they decided to go ahead and take out KPs adenoids before the palate repair. That was scheduled for January, but then KP came down with bronchiolitis, so that pushed us to the beginning of March. So, we'll be in the PICU again on March 2.

We also saw a geneticist in January, and aside from KPs nose being small (but incredibly cute), she does not see any additional syndromes present. Also, for any additional children, there is a low chance of recurrence. That was higher than what all of the other doctors have told us, but I know that we can handle whatever may come our way. Our appointment actually turned more into an appointment for me rather than KP. So, early screening time for Mommy. Woo hoo.

We've been seeing our AI teacher for Deaf Ed once a week, and KP has been making lots of progress. He is now signing more, daddy, ball, shoes, car, help, bottle, up, out, and he has a few more in development. :)

We have also been seeing a Speech Therapist once a week, and KP has been making lots of progress there, too. He can now say: t, m, b, p, and d. This is HUGE since d is the only consonant he has been saying since he was 3 months old. So, the addition of all these others is encouraging. He is also babbling more conversationally now. I think he really thinks we should understand him. I brought him out to the couch the other morning and got him tucked in, and he demanded "Yo Ga" for Yo Gabba Gabba, and once I got it turned on demanded "Ba". Hmm...maybe I'm not ready for this whole talking thing. :)

As you know, we've been doing timeout since he turned 1. This week he finally "got it", so when he does something wrong, we can now tell him to go sit in timeout, and he does. We have to monitor him pretty closely because he still thinks it is a game, but he knows where to go and that he has to sit with his legs crossed and his arms down.

He's also dancing all the time and helping around the house. He "fetches" items when you ask for them. :) And because I'm very particular about cabinet doors being closed and drawers being closed, he will go behind me and close anything that is open. :) He will also open drawers that he's not supposed to, get whatever he wants out, and then close them behind him. It is very cute, but it is also difficult to tell where he's been. :)

This is a really exciting time for us right now because he is developing so rapidly. He loves playing his piano also. He pretty much plays it at least twice a day. I tried to teach him chopsticks yesterday, and he got the first two notes. Still, pretty impressive for an 18-month old. :) I think, musically, he is starting to figure out that the notes go together. So, I think it's time for us to get the stickers for the keys.

Anyhow, I'm rambling now. One last thing and then I'm gone. KP took a tumble at his new daycare. He is okay, but his cute little face is a little banged up. He'll heal, and I think we notice it more than him...of course.

Thanks for checking in with us. :)
xoxo
Margot

My trip to California

2009-02-08T15:47:00.013-06:00

Breakfast time at Bachan & Jichan's house ... yoghurt & toast...yummmm

All done

Jichan's breakfast tastes much better, especially when I get to sit on his lap

This merry-go-round was really fast... I think I like the slow Texas ones better

We played in the park...in the tall grass

...then I wanted up

Jichan picked me up... then I wanted down

Bachan knows the way to my heart is through my stomach ... popcorn, my most favorite snack

I got to walk up and down the stairs at the park near Bachan & Jichan's

Cousin Nadia and I got to play on the stairs while the grownups talked

You should see the other guy.

2009-01-12T22:30:00.002-06:00

I will post a holiday update blog, but this one is not it. :)

This blog serves many purposes to many people. It informs, it educates, but for us, it archives, and so here it is ladies and gentlemen. You've seen his first teeth, first steps, first haircut...and now we have KPs first shiner. :)

Yes, it is coming in very nicely now.

We have KP's pony that he got for his birthday next to our entertainment center because it is out of the way, but he can still play on it. Recently, he has begun using the side of the entertainment center to help pull himself up onto the pony all by himself, so that has been an added bonus to the location.

But, alas, yesterday he overshot the saddle a bit and hit his head. Right after it happened, he was smiling and laughing with Daddy and went to bed. He had a small mark, but nothing too bad. This is what it looked like when he woke up this morning. I wasn't able to take the picture until this afternoon, but I think it just keeps getting darker!

Hello...are you there?

It doesn't seem to be bothering him, but of course we had a doctor appointment this morning and deaf ed tomorrow, and I can only imagine what they all think!

xoxo
Margot

Merry Christmas

2008-12-21T20:31:00.000-06:00

Happy Holidays everyone! Merry Christmas and Happy New Year!

xoxo
Margot

P.S. We're not sending out "real" Christmas cards this year, so enjoy. :)

Updates

2008-12-18T19:30:00.000-06:00

KP has been recovering nicely from his tonsillectomy. Today is his last day for antibiotics, he stopped his steroids yesterday, and he's been pretty much off of his pain medication since last week except at night.

One of his pain meds was a sucker that numbed his throat, and he just sucks on it for about 15 seconds every four hours. We usually just give it to him at night so that he can sleep well. The cute thing is that we put it in his mouth and count, "one-one-thousand, two-one-thousand" and so on, and at "fifteen-one-thousand" he pulls it out of his mouth and hands it to you. So adorable.

His first few days post-op were pretty rough, not because he was in so much pain, but because he wanted to go play outside and eat solid foods, and climb all over everything, but he couldn't per doctors orders. This is a better place to be than where we were after his last surgery where he just wasn't feeling up to doing anything.

Anyhow, all seems to be well with him now. He coughs more than he used to, and drools way more (I know, I didn't think it was possible either). The only drawback is that he picked up some bad nightime habits while he was in the hospital, so we're hoping that our trip to see Bachan will reset his time clock enough so that he will go back to being our perfect little sleeper.

We went out to Fort Worth to see the craniofacial specialist yesterday morning, and while we're not too fond of him, he does know what he's doing, so I guess I'll just have to deal with him while we get through this. He did confirm that KP has a submucous cleft palate. At this point we are just going to wait and see how his speech is (once he starts speaking) to see if we need to do anything about it. There is a chance that we will not need to do anything and that he will learn to work around this little roadblock as well. The good news is that if we do have to do surgery, it will only be to repair the soft palate so it will not be as extensive. We will be going back to the specialist again in March so that he can evaluate how KP is progressing.

On a lighter note, we are hoping to go see a certain someone and his reindeer this weekend, so I should have some cute pictures to post. We are also going to be off of work for the next two weeks for the holidays, so we have lots of fun planned.

We may also be going to the Arboretum this week so that we use our tickets before they expire. Plus, they have a nutcracker exhibit and a misteltoe arch! :)

On Wednesday, we're getting together at MeeMaw's with Grandad Lynn, Grandma Sheri and Uncle Logan.

Then it's off to church and then home to set out some goodies, let the Christmas bear read The Night Before Christmas, and go to bed. :)

Thursday is Christmas with Mimi Candy and Grandpa Mike. :) Who knows what kind of trouble we'll get into. We're thinking of going to the ice exhibit in Grand Prairie, or attempt an early movie, but we're up for anything and in search of Christmas adventure. :)

Friday we will clean and pack, and then it is off to Bachans on Saturday morning where we will get to see lots and lots of people and stuff ourselves silly on great food. :)

I hope that everyone has a happy, safe holiday with all of their families and friends!

xoxo

Margot

Here we go again...

2008-12-08T17:13:00.003-06:00

Well, we're in the hospital again for another surgery. On Friday we met our new ENT, and he decided that we would need to take out KPs tonsils and adenoids. We knew that this might be coming, because the sleep specialist told us it may come to this if his cpap didn't get the job done.

So, we got to the hospital at 6:00 this morning to check in for surgery. KP had a great time hanging out in the playroom. Wouldn't you know it, a room full of toys and he goes for the toy cell phone first, and then the toy vacuum. What can I say, the boy know what he likes. :)

Anyhow, we got wheeled up to surgery around 7:30. We hung out in the waiting area for about half an hour, chatted it up with the doctors, and then off he went, never once looking back. You know, he doesn't have a bit of stranger danger, so when the anesthesiologist came near him, he just reached out to him and that was that. Hmm.

Surgery only took about half an hour. During that time, they scoped his trachea and took out his tonsils.

Trachea looks the same. Still like a pancake. The doctor feels like it IS getting restricted by something on the outside which means more tests, and we will be revisiting the option of stitching his aorta to his sternum. I'm still not so sure about that, so we'll be having a long talk about it before it happens. My only reservation is...well, it's been a while since I've taken anatomy, but I seem to remember the aorta being a pretty important part of the circulatory system...I'm just saying.

And, only the tonsils came out. It seems that while he was in there, the doctor took a look at the roof of KPs mouth, and it appears that he has a cleft palate. So, he left the adenoids in because in kids with a cleft palate like that, the pressure from the adenoids provide a wall where there isn't one but should be one...that's what I gather so far. Bear with me, I haven't had a chance to research this at all, or talk to the doctor without a toddler screaming in my ear. But that is my understanding.

Anyhow, we now have a referral to a craniofacial specialist, and have added 2 more surgeries to our plate (fix the palate, take out the adenoids). So, that's what I get for writing that our surgery last month would be our last MCD surgery. That'll sure show me.

The endoscopy that we were going to do today will be done in January instead. His ears are all still the same.

One thing that is nice is that we had a follow up appointment scheduled with our general surgeon tomorrow, that we have had to cancel for obvious reasons. When we called to cancel, his office did that for us, and then his surgeon called us back himself because he wanted to know what was going on with him. I really do like that his doctors (well, his main 5 anyhow) take a true interest in every part of him, even the parts they aren't involved in.

Well, that's all for now.
xoxo
Margot

Thanksgiving 2008

2008-12-01T15:38:00.003-06:00

Here are the long awaited pictures. Slideshow only this time, sorry folks. We're trying to improve the workflow so that we can update more often. But, if you click on the slideshow, it will take you to picasa to view the album one by one.

Well, it's been a busy month/year. I think that it is sad that there were more posts for 2007 than 2008, by quite a lot, and our little guy was only with us for 4 months of 2007. What can I say? We've been busy, and he's a handful (as you can see).

We had what should be our last major MCD surgery a couple of weeks ago. KP had to stay in the hospital for a couple of days. It didn't go as badly as I thought it would, though. We had to go in on Monday for bowel prep, which if you remember involves lots of golytely (which doesn't at all), and NPO for KP.

We went to the hospital totally prepared, and that helped. Thank you Yo Gabba Gabba DVD! :) That combined with Bachan's DVD player, meant that we were Gabbafied for our entire stay. :) One of the nurses asked if that was the new Barney...well, I guess so.

Okay, bowel prep wasn't so bad this time because KP was actually able to wear diapers. This is the first bowel prep without an ostomy, and it's amazing how much smoother it goes. He only had one huge bed linen changing event, and that happened when Daddy was staying with him overnight, so that was okay. :) Tee hee.

Surgery went well. I packed all of our bags just in case we had to go to PICU again, but he woke up fine and we got to return to our room (the packing helps). We only had to stay overnight after surgery, and then we got to bust on out of there. It was quite exciting.

Three weeks later, and I think that he is finally healing. This one took a bit longer than the others, and I think that is because he is getting older now. Each surgery takes a little longer to heal. That being said, I'm not looking forward to his hand operations next year. Booo.

Anyhow, Thanksgiving was great. We got to see Candy's family on Thursday at Cindy's and Lynn's family on Friday. It was nice to see everyone. Cindy's backyard is a wonderful oasis, and the site of our little impromptu photo shoot. :) I have been inspired! It also helps that the weather was so nice, that we sat outside to eat, and let KP just run around and play. I think that is the first non-shift meal that we have eaten since he's been born!

So, tomorrow we start our deaf ed classes at JJPearce. I am officially enrolling KP into the school district. I was filling out the enrollment forms, and they have a space for grade...I left it blank. :) At least he's walking, so this feels less weird than if we had to enroll him when he was 3 months old like they originally wanted to do. :)

We will be meeting with our deaf education teacher every Tuesday morning for at least the next 6 months or so.

Thursday we begin getting Developmental Services once a week as well. This is the appointment that will end up transitioning to Speech Therapy once KP starts speaking.

So, our mornings are packed full of fun. We now have just Wednesday and Friday mornings free. Seems like there is something we can schedule there... :)

We also have our 6 month evaluation with our ENT tomorrow. I will try to post how it goes. It will be nice since we're meeting with our Deaf Ed teacher beforehand, though, because she is going to give us a list of questions to ask the doctor. We'll be scheduling another ABR for February as well.

Finally, next Monday KP will be having another upper GI endoscopy. Our hope is that everything is the same as it was last time and we don't have to keep going in. If they have to dilate his esophagus this time, we will have to go in once every 3 months to have the procedure done again. Blech.

Well, that is all that I have right now. Sleeping Beauty is beginning to stir. I will try to update more often, I really promise this time.

Let me know what you think of the new picture format. Would you rather have the pictures one by one? Did you like other slideshows better? Would you prefer more frequent updates, even if there are no pictures (because the pictures are really what hold us up)?

Please post a comment answering some of the questions above. And if you're an anonymous poster, please sign your post in some way so that I know who you are. :)

xoxo

Margot

A day with Mamaw and Papaw

2008-11-09T09:19:00.007-06:00

I'm playing music on the pot-drum while Papaw relaxes on the big chair

Look how tall I've grown

I'm sliiiiiiiding ... of course, with Mamaw's help

But I can climb the stairs all by myself

Papaw pushed me on the swing. Soon I'll be able to swing all by myself like a big boy.

Mamaw helped me feed bread to the ducks

Papaw and I walked a long ways

To Mamaw and Papaw it felt like we walked across the entire USA. Papaw fell asleep at 5pm... I took a long nap too

State Fair 2008

2008-10-13T21:28:00.010-05:00

Big Tex and I are buddies .. this is my 2nd trip to the Texas State Fair. Check out my first trip at http://everettalexander.blogspot.com/2007/10/fair-day.html

Of course, food is the main attraction... deep fried avacado was the first treat

Mom is really enjoying it

And all I get is a box of crackers?

Next, deep fried grilled cheese sandwich

Bachan takes a big bite...

Dad, I want some too

Well, maybe those crackers were a better choice

next on the list is deep fried banana split (without the banana)

Mom gets her share, all I get is water

but, at least, I get to walk around ...

Dad isn't sharing his fried peanut butter and jelly sandwich with anyone.

what's this? Mom is eating "fire and ice" - fried pineapple with ice cream, strawberries and other yummy stuff

Last treat is country fried bacon - as if bacon doesn't have enough grease, we Texans have to put batter on it and deep fry it...

Bachan enjoyed it and washed it down with a Diet Coke - a nice balanced meal

It's now the end of the day and I'm ready to go home. See you next year at the fair.

KP is on the run

2008-09-07T06:22:00.002-05:00

Now we're in trouble (yes, Mom and Dad that mean you)... I was just commenting how nice it was that KP wasn't walking independently ... it was easy to find him. Well yesterday, Sept 6, he learned a new trick. Take a look

...and the blur at the end is bachan and the camera tripping over KP's walker... I was walking backwards very quickly to keep KP in the picture and the eyes in back of my head were closed...

KP's very busy week

2008-09-07T05:17:00.005-05:00

I got to ride in my very own taxi

No one told me I was getting a haircut, but I had crackers so I was just fine

Now I have a big boy haircut

...then there was my party... with balloons

and food .. my first peanut butter & jelly sandwich (of course, all organic)

I hung out with bachan and watched everyone at my party

grandma Sherri helped me walk around to say "hi" ... well at least that was my plan

granddad Lynn and I had a good old time

then I got to stab papaw Steve

after all that,
I got down to the business of being 1

I loved the cake Mommy made especially for me

I told Mom and Dad they could have a bite, but Dad got confused

After Mimi and grandpa Mike cleaned me up I got to have a special ride

What a fun party ... thanks Mom and Dad

I had a GREAT time

Happy Birthday, Prince Everett!!

2008-08-29T09:22:00.001-05:00

Happy Birthday to you! Happy Birthday to you! Happy Birthday, dear Everett! Happy Birthday to you!

It's been quite a year, and I wouldn't trade it for anything in the world!

xoxo
Margot

The beginning of the end

2008-08-08T18:26:00.005-05:00

WE'RE IN TROUBLE NOW!

KP took his first tentative unassisted steps
on August 6

And two days later he's on the move

Wow, what a month!

2008-08-04T13:30:00.002-05:00

Well, this has officially been the longest we have gone without a post...not a single one for the month of July. Wow! That means I have A LOT of updating to do. Bear with me here.

Okay, first off, no pictures for this update. That is what has slowed down having an update at all. It just takes so much to get the pictures organized and then up to the blog, and after I update you, I think you'll understand why this is sometimes a very daunting task. :)

When we last left you, KP had just had his colostomy reversed. Everything seems to be going great on that front. We have gained another doctor, a GI doctor. To tell you the truth, I'm not sure why we haven't had one before this. Since most of KPs problems deal with his GI tract, you would think that we would have collected a GI doctor earlier in the game, but who knows? (Funny thought, what if you actually had a game made out of KPs life? Like Monopoly, but you would go around the board collecting and losing doctors and body parts...but I digress)

Anyhow, our attention to KPs diet has become even more important now that he has had the reversal done. We are keeping him to a High Residue diet, and he has added Reglan and Miralax to his arsenal. This is a constant struggle with minor adjustments here and there because constipation is his worst enemy, and if it happens to him it could mean big trouble. So, Italy really does have a whole new language...well, our section does anyway. :)

So, here's the breakdown of how we've been doing since we last caught up with you:

Jun 21 - We got to go to Granbury to see Jamil and Josiah who just happened to be in town for the weekend. We had a fun time, and KP and Josiah got to play a little bit, which was fun for them. Josiah took a liking to KPs walker, which was cute because he got in it and started walking around in it (and he was WAY too big for it), but also because the walker was Jamil's at one point in time. :) It was really nice being able to spend some time with them before they left. They are now in Japan for the next three years.

July 4- Back to Granbury again for the weekend. :) Granbury puts on a specatacular fireworks show every July 4 right on the lake. So, we got to go out on the boat with the whole family and watch the show. KP got a little fussy waiting, but once the fireworks started, he was extremely interested! He thought they were great. :)

July 9 - We went to the hospital bright and early in the morning to meet our pulmonologist and GI doctor. See, KP has tracheomalacia and laryngomalacia, this is why he sounds like a barking seal most of the time. But, lately his coughing has become more severe and more frequent. Well, his GI doctor suggested his pulmonologist, and his pulmonologist suggested his GI doctor...see where this is headed? So, we all decided to get them both together in a room and let them have at it. :) KP had a bronchoscopy and endoscopy done to decide which system was at fault. We also thought we may have to dilate his esophagus that day as well.

Well, it appears that he does have some reddening in his esophagus, which we expected with his GERD. Additionally, there is a stricture present, as we expected, but there was good news as well. His GI was going to dilate him to 10mm, but his esophagus was already at 9.5mm, so he decided not to. We go back and do this again in November, and if things still look good, then we may not have to dilate him. :) YAY!

As for his trachea, well that is an entirely different story. KPs trachea very much resembles a pancake. I will try to scan the pictures that we got. His trachea should look like a C. Instead it looks like an I. There is also a narrowing in his right lung. A sleep study was recommended.

July 11 - We had our 6 month follow-up cardiologist appointment and...we no longer have a cardiologist. :) Yay! We are 100% free and clear. We don't have to go back for checkups or anything! Woo hoo!

July 14 - KP started swim class! Oh, he had so much fun! We now have swimming every Monday at 10:30. On the 14th, we started off with just water acclimation, but we have steadily been increasing our underwater breath time as well. As of 8/4 we are up to 2 seconds underwater! :) When Dylan came to observe the first class that we went underwater for 1 second, he almost flew off the observation deck (good thing the glass was there). He said it was the longest second of his life...then I told him that the other kids in the class are up to 4 and 6 seconds. :)

July 17 - We met our new sleep doctor. She told us about some options available once we complete the sleep study. If they find that KP has obstructive sleep apnea, then he will be put on a CPAP machine at night to help keep his trachea open. We are pretty sure that he has sleep apnea, so we are really looking forward to him getting a good night's rest if possible!

July 27 - We had our sleep study. Dylan and KP went up to the Sleep Institute around 6pm to spend the night in the clinic. Dylan said it was awful, but KP seemed to have weathered it okay. He STILL has glue in his hair from some of the leads. They put about 15 leads just on his head, and a bunch of others all over the rest of him. I have no idea how he got to sleep. :)

July 28 - We had another follow up with our general surgeon. So far we are progressing nicely. So much so that we have now upgraded to the dreaded 13. :) Not really dreaded, we should have been here before surgery, but we are here now, and that is all that matters.

July 31 - We had an appointment with Texas Scottish Rite. Let me tell you, these people are AWESOME! TSRHC is a Masonic charity, so they have never charged a patient for services. So, that is an immediate plus! But, their hospital was amazing! And there are so many volunteers. It's the little things you notice. For example, I had to change KPs diaper, so I asked the lady at the desk where I could go. She walked me over to where I needed to go right down the hall. What it must be like to be staffed so fully! :)

Anyhow, it looks like we are going to miss our 1 year mark. KP will be having surgery on his hands next year because they want to wait until his hands are bigger and they have a little more to work with. But, the good news is that he will be able to keep his thumb.

He has Thumb Hypoplasia. On the Blauth Classification, his right thumb is a 3A, and his left thumb is a 2. They are also concerned about the length of his radius and some possible missing cartilage under his thumb area.

He has also been diagnosed with scoliosis. So, we now have a hand doctor, and a referral to an orthopedic specialist at TSRHC.

Some other noteworthy occurrences this month:

I don't know if you've been keeping track here, but I have. So, we lost one doctor and gained 3 this month. If this is how it's going to go, I would rather keep the doctors we have. :)

Dylan's car finally bit the dust, so we bought a new car...a minivan. :) Dylan said that his manhood did not shrivel up and die as soon as he got in the drivers seat, so we'll take that as a good sign. I love the car. And, we bought it from CarMax, and I've got to say, that had to have been the easiest car buying experience that I have ever had. I would recommend them to anyone!

So, coming up soon:

This Wednesday, we have high hopes that KP will get to take his helmet off forever!! Keep your fingers crossed!

Next Monday, KP goes in for surgery again. This time with his urologist. We are finally repairing his chordee and hypospadias which means that I have to start rethinking my diaper changing techniques. At least I get to work into all of this gradually, instead of all at once like other parents have to. :)

Well, thanks for bearing with me through so much verbage. I promise to have pictures next time. A full picture post with minimal verbage. :)

xoxo
Margot

Pictures, Pictures, Pictures

2008-06-16T13:08:00.005-05:00

Well, it has been a long week and a long time coming for a lot of things. But, first, let's go back in time to catch up on some picture posting.

For those of you with slow connections, I apologize, but we have so many photos to catch up on, I had to create slideshows. If you click on a slideshow, you will be able to view the pictures in album format.

So, in the last month, we played with bubbles, Ba-chan came to town, and we got to go to Mommy and Daddy's company picnic at Sandy Lake Park.

Then it was time to go into the hospital and finish the last of KP's major surgeries. From here on out we are hoping for mostly minor adjustments. Here's crossing our fingers.

KP finally got sprung from the hospital on Saturday, right before Father's Day. We invited the family over to celebrate his release, and Father's Day.

We finally got to break out the champagne that we bought for KP's birth, 9 months ago! It was nice to be surrounded by the family and finally be able to toast our little man!

In the morning we got to pack up all of the ostomy supplies. Little by little KP's room is looking less like a hospital room and more like a little boy's room. We're not ready to send the supplies of to UOAA just yet, though. We're going to wait until the 2-week checkup to make sure that this surgery took just to be sure.

This has been such a big part of our life so far. It is strange that this part of our life is over. To those of you reading this, that probably seems weird. But, it's true. During Dylan's toast yesterday, he said that it looked like we were on our way out of Holland and on our way to Italy. And, I know it seems weird to most of you, but Holland hasn't been so bad. We got to know the language, the people, and how to get around. Holland has been a pretty comfortable place. And now that we're on our way to Italy...well, we have to start all over again. And that is kind of scary.

xoxo
Margot

No more ostomy bag

2008-06-13T10:24:00.002-05:00

I planned to post photos of KP's last outing with an ostomy bag as well as give you surgery status but the computer I'm using doesn't recognize my memory card, so you'll have to wait for the picnic report and photos until I get back to the house.

On Tuesday, Mimi and I spent the day at the hospital for KP's bowel prep ... he got cleaned out and was ready for surgery the next day. He was in an good mood even when covered in poopy water. It was helpful to have two people here to change him.

On Wednesday, he was in the OR at 8am and in recovery by 915am. Dr. said all went as planned. He was on morphine and anxiety meds so he was sleeping most of the time. Mimi arrived while he was in the OR. Grandpa Lynn stopped by later in the day to say "hey" and cuddle with KP.

Thursday KP was still taking Tylenol and was a bit more active. He was still feeling the effects of the drugs...kind of loopy but that didn't stop him from trying to grab Grandpa Lynn's glasses. Notice I haven't mentioned anything about food ... he's only getting IV fluids and is amazingly calm.

Today, Friday the 13th, he had his first bowel movement...yes, it's a big deal... he was pitching a fit which means he knows when he's pooping. It also means he gets to start eating as soon as the Dr. gives the OK (yesterday he was here at 945am...but today it's after 1030 and no doctor.). He's suppose to get the dressing over his incision removed and will be able to take a bath...then he'll smell like a baby again instead of a smelly tennis shoe.

Margot can tell you about the hourly diaper changing routine if you're interested...a lot more stuff than I ever had to go through with her. And no drugs today, not even Tylenol...seems just fine unless he's pooping...then he's crying.

That's all till I get to the house and can post photos..
Bachan

KP has his first tooth and more

2008-06-04T07:37:00.006-05:00

Can you see the tooth? Trust me, it's there with another one one the way.

Everett has been busy since the last post. He gained 3 lbs. since his 6 month doctor appointment. He is now 18 lbs. 15 oz. (20th percentile)and 27 3/4 inches tall (35th percentile).. so he's still a little guy... 80% of babies his age weigh more than him and 65% are taller.

He's now eating more than just pureed fruits and veggies. He's graduated to ground chicken, diced veggies (yes, we now know we still have to cook them to almost mush so KP can gum them), whole wheat rotini(noodles) and whole wheat waffles. He'll try nectarine slices this afternoon. KP's pediatrician says he can start on table foods... need to make sure they're gummable(is that a word?).

KP has outgrown the sink so he had his first tub bath ...

Almost forgot.. KP's "reversal" surgery is scheduled for June 11th. On the morning of June 10th Mimi and I will be at the hospital with him for his all day presurgery clean out procedure. Neither of us were present when he went through this for his "pull through" but Mommy says we're in for a real treat...HA.

That's all for now ... next time we post it'll probably be an Everett without an ostomy bag :-)

Bachan

Has it been 2 weeks already?!?

2008-05-04T23:17:00.004-05:00

I usually like to post updates about what has been happening right before a big announcement, so here is an update. Because tomorrow we (well, Dylan and KP) will be going to the developmental pediatrician in the early morning, and then to see the general surgeon again later in the morning. Hopefully we will find out a surgery date. Mommy isn't too optimistic, though since we are still on size 10 and we're supposed to be up to 11 by now. But more on that later.

Well, whoops. I just went back and re-read the last post to see where I left off...and, well, I guess I forgot the part where I update you on the big announcement. Sorry about that.

Okay, we went and saw the general surgeon a couple of weeks ago. He said everything looked good, but now we are having to dilate KP twice a day. We started off with a size 10, and our goal is to be at 13 before his next surgery. We are supposed to upgrade once a week. But, the first weekend in, we were having trouble. So, back to the general surgeon again last week. We have now started pushing a 9 through before the 10 to kind of "open things up".

And here's where I tell you about Dylan's trip to the grocery store after our first doctor's visit. Mommy has been really, really stressed out lately, so Daddy thought he would be nice and pick her up some Coronas at the store (mucho appreciated). But, Daddy also decided to pick up KPs very important medical supplies in the same trip...so, Daddy got to go through the grocery line with Coronas and KY Jelly. :D I bet the checker was wondering what kind of night HE was going to be having.

But, seriously, I'm just waiting for our neighbor to call CPS on us. Because, picture this: You don't know our kid. We have just moved into a house and have no window coverings on KPs window. His changing pad is right in front of said window. On said windowsill sits a HUGE tube of KY Jelly and 3 different sizes of dilators. Twice a day we have to hold him down and dilate him. Now picture that you're our neighbor. Yeah. Just waiting...

But, I digress. No surgery date yet. Hopefully we will find out tomorrow.

KP went and stayed with Grandad Lynn and Grandma Sheri a couple of weekends ago. He came back with a CD worth of pictures. :D Mimi took pictures this last week, too. But we don't have our scanner hooked up yet, so those will have to wait.

I think Grandma Sheri didn't have her makeup on, because there is not a single picture of her facing the camera. :D

KP and Meemaw

Laughing Baby...I hope that's Grandad Lynn's lap! :D

We have also had a very eventful week at home. The boys have been home a lot lately by themselves (I know, it's kind of scary). So, you know what that means...lots of pictures and...guitar hero???

It has also been brought to my attention that Goose has been neglected. Well, not actually neglected, but that we don't talk about him as much as we used to. So, here is proof that he is still alive.

See, happy as a lark. :D

Beautiful boy.

Okay, funny story. See, KP is ADDICTED to Cheerios. I would like to personally thank the maker of Cheerios. As I'm sure many parents would like to. But, we started feeling bad because we make such a HUGE deal over KP eating his Cheerios, and then poor Goose just sits there looking pitiful. Well, KP throws the Cheerios, and Goose goes after them, and we don't yell at him because we figure this is the beginning of a beautiful relationship...and a slightly lost cause. But, by doing that, we seem to have created another addict...

I swear to you. He did this himself. And, in true Dylan fashion, instead of scolding him, he ran for a camera.

Thank goodness the box was basically empty.

Oh yeah. And KP talks A LOT now. Real vocalization, not just grunts. And what is his favorite vocalization right now? MaMa. Oh, yeah. He calls the wall, his binky, the dog, his Dad, the air, all MaMa. But learning the word is the first step in learning the meaning. :D

xoxo
Margot (aka MaMa)

Long Week...

2008-04-24T08:02:00.004-05:00

Well, we're home. That would be the reason for the lack of blogging, Everett came home with us.
Here are some pics from before surgery. During bowel prep and then just waiting to go downstairs.

Amazingly enough, the only time I got to blog while in the hospital was while he was in the PICU.
I have to admit that I wish they kicked you out for an hour on the regular floor, too.

Anyhow, the very next morning they let us out of the PICU...well, they told us that morning around 7 that we were leaving. We made it back upstairs that afternoon around 2. Welcome to hospital time. :)

After a long battle with morphine and ativan, we finally decided that he didn't really need any pain meds at all and by Friday morning he was completely off of everything...including Tylenol.

Mommy had to go to work, so Daddy got to step in and spend some quality hospital time with KP. So, of course, about 8 million pictures followed.
KPs girlfriend, Kathy came to visit him in the hospital, too. :D She was our guest photographer for the day. :D
And she brought presents and a super duper cute card! :)

KP was wiped out from all the attention so he grabbed some much needed zzzzzzzzzzzzzzz..

Anyhow, KP is doing well. He is just a bit crankier than usual, but I think that's because we retrained him in the hospital and now we're paying the price.

I won't bore you with the details of his healing, but let's just say everything is looking good.

We had an appointment with the cranial people yesterday, and they agree that he is making good progress. Today we are going to see our surgeon for post-op follow up and we will find out when our next surgeries will be. Hopefully it is after Mom is here, but if not, we may be reaching out quite a bit to local family this time for help because there is a lot of transition going on at work right now.

For those of you keeping track, the next surgeries will be colostomy closure and chordee repair. We are hoping to be able to do them together, but we are not sure if that will be the case. Now that KP has had an adverse reaction to anesthesia, it makes every surgeon a bit more weary about putting him under.

Well, that's all for now. Our friend, Sam is now a dad. His twins were born on Monday. They are hanging out in the nicu for a while, but they look great and are progressing well.

This is Sam practicing being a Dad with Everett back in November.
(No, this is not a recent picture, nor is that one of Sam's little Dudes)

Well, that is all for now.
xoxo
Margot

What a butthole ;)

2008-04-15T19:31:00.003-05:00

The past couple of days have been interesting to say the least.

We checked into the hospital on Monday morning to get ready for bowel prep. Well, let me tell you a little something about bowel prep. Around 2 pm they put an NG tube into KPs nose to start delivering Golytely. Within that same half hour, they also took his blood for labwork, irrigated his mucus fistula, and gave him antibiotics orally. He was SO excited.

Well, after irrigation, I put a new bag on his stoma, and we watched some cartoons together. And then there was this smell....and come to find out, the bag didn't stick as well as I thought it did. So, Everett was swimming in a puddle of poo. We managed to fill up the trashcan and the linen bin getting him cleaned up. So, I ended up just putting a diaper on over his stoma and putting another diaper on like normal over all of that. It was quite a cute getup. Too bad I can't get my email on my phone to work right now. I will do my best to get these cute pictures uploaded.

Anyhow, 2 more irrigations and 2 more doses of antibiotics later, and we got to go to surgery this morning.

They came to get him around 11:30 am. By 1:30pm they were operating on him, and by 3ish they were done. His general surgeon came out to talk to us and said everything went well. Reports at this time are that they WERE able to get him done without the full laparotomy.

Anyhow, then his surgeon came out again and said that we would be going to the PICU instead of back to our floor. He said that Everett was not breathing on his own and needed to stay on a ventilator.

So, I went upstairs and packed up our room and went back down to the surgery waiting room to await news.

An hour later they came back and told us that we were ready to go up to the PICU....and, what do you know? He was breathing just fine on his own. Apparently the anesthesiologist was just worried because he had some stridor when he woke up. Oh well, he always has that.

So, we are now in the PICU hanging out. I'm about to be let back in after shift change and will get to spend some time with my little baby boy.

I will try to post pictures and more information soon.

The bottom line is that the surgery went well, he is resting comfortably, and his prognosis is looking good.

xoxo
Margot

Cutie Patootie.

2008-04-07T22:28:00.003-05:00

We are officially a "go". Everett's pull-through is scheduled for next Tuesday, April 15 (don't forget to do your taxes, btw). We will be going into the hospital on Monday for bowel prep, which thankfully means I won't have to do any last minute packing Tuesday morning. :)

Everett will also be getting his helmet this Thursday. So, our poor little guy has a busy week ahead of him.

But, this week was fun and exciting, also. Everett went and stayed in Granbury this weekend and had a great time.

He also decided this week that he is not a fan of squash, but he is willing to give cheerios a shot...on a one by one basis.

He had another photoshoot with Dad this afternoon because we are big procrastinators...plus, one of us has to be watching him, why not photograph him? :)

And on with the show...

Beautiful Eyes

Mmmmm....drool

Buddies.

Beautiful.

Friends.

Close Friends.

Precious.

Kisses.

More kisses.

Speaking of kisses.....
xoxo
Margot

p.s. If you've made it this far, you must be a true fan. :) To see pics of the new house, come visit us at our new blogspot. xoxo

2008-03-26T23:21:00.003-05:00

Eleven pictures, five videos, no comments. I am dissapointed in you. It sure is hard to keep this blog going without encouragement... :)

Here are the updates.

On Saturday, 3/22, Daddy decided to try to share his Dr. Pepper addiction with KP. Luckily, the binky proved to be wayyy more appetizing.

Sunday, 3/23, was Easter this year. KP had lots of fun. The Easter Bunny snuck in overnight and left KP a present.

Is that for me??

Ooooohhhhh.....Aaaaahhhh....

Umm....Mommy, I think I got crabs. :D

Goose was very interested in the whole ordeal.

Is that a penguin?

**sigh**

Then, KP got to have his second ever bath! No, he's not a dirty kid! We have been told up to this point that he could not have submersion baths because of his ostomy, so we have been giving him spongebaths for the last 7 months. Well, no more! Mommy got fed up with that, so KP is now getting baths in the kitchen sink! :)

Apparently there is a picture of Daddy floating around that looks just like this (minus the ostomy, of course). :)

Toys!!! :)

" The Easter Bunny hooked me up!"

Shampoo Head

This is KPs Rocky impersonation (a.k.a. the most pitiful face I've ever seen).

All Clean!

Into the Easter outfit! You should see the tail!

KP checking out the cool duck Mimi got him.

After all of the excitement from Easter, it was time to calm down. KP had surgery early Monday morning. I know Bachan already gave you the details, but I swear they were in there for only half an hour. It's crazy what they can do these days!

I had surgery today...can you tell?

Here is one of the coolest things about this particular surgery...outpatient procedure. Wow. It is so weird to bring a baby home the same day that they go into the hospital. This will officially be the first time I have gotten to do THAT! Lots of firsts this weekend.

KP is feeling much better now. He is healing well. We are shuffling him around while we attempt to get the house finished. I will be posting a new blog soon, dedicated to our home improvements. I cannot guarantee individual photo posts, but it should be interesting all the same.

xoxo
Margot

Everett's hernia is repaired

2008-03-24T16:36:00.003-05:00

Real short update: Everett is resting at home - semi comfortably... as comfortable as one can be after surgery. He's fussier that usual right now but, knowing him, he should be back to his normal happy self in a day or so.

Mom & Bachan brought him to the hospital at 6:30am this morning (Dad was sick so he stayed home.). He went in for anesthesia at 9:30am and was in recovery before 11am... short and sweet. The doctor said everything went as planned. Everett's post-surgery check-up will be in two weeks. Scheduling of his next big surgery will be a topic of discussion at that time.

Now he has two more small scars. His incision is held together with "super glue" and steristrips..no need to remove stitches. Other than a ban on tub baths for 48 hours and making sure we support his bottom when we pick him up - to keep the incision area from being stretched - he doesn't have any restrictions.

A new house, St. Paddy's Day, Solid Foods, etc.

2008-03-20T08:11:00.009-05:00

It's update time again...twice in one month...are you excited?

Whoever has the slow computer, I apologize for the slideshows and I will try to post each picture individually. However, please note that individual pictures from the slideshow can be viewed by clicking on the slideshow.

Anyhow, on with the news:

We bought a new house this month. :) We are uber excited. Bachan has been with us since the end of February. Jichan came in last week for a week to experience our weird snow phenomenon. We would have posted pics of KP in the snow, but then we figured that would just be proof of bad parenting on our part when he had to go to the hospital. :) So, KP didn't get to experience this snowstorm.

Bachan and Jichan worked very very hard to help us get the new house in order. By the time Jichan left, we had paint on the walls and floors in half the rooms. Grandad Lynn, Grandma Sheri, and Mimi came over and helped paint as well. Cousin Mario came and helped us get started on the floors, and man, was he a help! He knows all the little tricks to make things go a bit faster...and I think we turned him on to a new toy in the process...so, expect a project involving a compound miter saw in Mario's future. :)

We just realized that we don't have any pictures of us, the for sale sign, and the actual house...oops. :) But there is the for sale sign that is no longer residing in our front yard...and there is our neighbor's house...and our intersection. :)

On March 9, KP had his first solid foods. We started out with rice cereal, because I was always told that more of it ends up on them than in them at first. You be the judge.

The food was sooo good that KP wanted to eat the bowl afterwards.

I guess KP caught on early that he always needed to clean his plate.

Anyhow, the next day was even messier, but he really enjoyed it all.

On the 16th, we had some family cuddle time in the morning. Goose, Mommy and KP decided it would be nice to hang out in bed for a while. KP especially loved cuddling with his puppy.

KP was SO excited, that he decided he was in the mood to do tricks. So, we taught him to roll over. :) Goose wanted in on the fun, too. He even wanted to show us that he could roll over, too. :)

Then it was time to play. We were going to introduce a new food on the 16th, but due to technical difficulties, we decided to wait. But, Daddy had KP in his seat and already had the camera ready, so KP had to perform! :)

Then it was time to play in our saucer. KP has grown up enough to start using the soundmaker part of the saucer. He is also turning himself around to play with whatever he wants to.

In celebration of St. Patrick's Day, we started KP off with smashed peas as his official first solid food. :) For those of you who are wondering, yes we made it at home, and yes they are organic peas.

On March 19, KP was possessed by hysterical fits of laughter that we just had to get caught on tape. :) We finally got out the camera after about 30 minutes of him doing this, so understandably, he peters out a bit at the end....but, man. You should have seen this little guy going! He has definitely discovered his squeal. :)

We've had a lot going on this month. Whew. And a lot more to come.

Coming up in the next episode....

KP will be celebrating his first Easter this Sunday. I hear that the Easter bunny has plans to visit the little man. :) We are all looking forward to his first Easter egg hunt in his new house. It should be lots of fun. So, stay tuned for super cute pictures.

On Monday, KP will be going into surgery again. This time it is for a pretty normal baby boy surgery, but it brings us one surgery closer to the big one. Monday is his hernia repair. We get to report to the hospital bright and early (7am) and hand him over once again. This is the surgery that was postponed because of him contracting RSV. So, this means that we are back on track...8 weeks later...BAH!

I'm still trying to gather the necessary paperwork for Cincinnati, but with everything else going on, I have to admit that it is on the back burner. I think I am going to make a concerted effort today to contact the rest of the doctors to get the reports that we need. Ack. Then it is off to Kinko's I go to make lots and lots of copies.

I do plan to have a conversation with our general surgeon at KPs post-op visit to see what his feelings are about us going to Cincy. I really am interested in his opinion. If he has heard of Cincy, I will feel a lot better. Our pediatrician (whom we absolutely adore!), was like "is there someone special up there or what?" Hmmm...we'll see.

xoxo
Margot

I know, I know....

2008-03-07T02:06:00.005-06:00

I'm a horrible updater. And a lot has happened, so hang in there. If I forget something, and you know I've forgotten something, leave a comment or send me an email and I will update.

And now on with the show...

So, I know it's dark, but I thought this would make everyone happy right up front. :)

The background story is that Dylan's car broke down, so we had to borrow my dad's Scion Xb. It has a lowered suspension, so the backseat rides very similar to that of a bucking bronco...like the real kind, not the car kind. Anyhow, Everett thinks that is just the most joyous thing EVER! :) Well, combine that with having Dad in the backseat with him, and there is just no stopping this kid! :)

Everett's hernia surgery was postponed because of his RSV, so now we are looking at tentatively March 24. We had an appointment with his pediatrician (one of about 6 appointments with his pedi in the past month). But this one was special, because it was his 6 month appointment! He weighed in at 15 lb 14 oz which puts him in the 20% for his age. But, he was 27" long which puts him around 70% for his age. So, here comes our little stringbean. :) We hope to be starting him on solid foods this week and possible even sippy cups! :) We will keep you informed.

We are also currently considering going to Cincinnati Children's Hospital for his pull-through operation. Dr. Pena pioneered the pull through procedure, and the Colorectal Center is the only one of its kind in the entire world. After hearing stories from other moms, I'm thinking more and more that this is the direction that we want to go in.

So, anyhow, February 29th was a very special day for us. (This is where we get all selfish...consider it a commercial break.) We officially closed on our house. Now for you veteran homebuyers, you're probably thinking, oh, congrats. Because when you bought your house you probably knew you were going to close at least 20 days in advance...we found out about 1:00 that afternoon. :) But, everything worked out, and we are super excited. Ba-chan is in town and Ji-chan is on his way in (flight cancelled today, so we're crossing our fingers for tomorrow). They're going to help us make our humble little house look like a home. :)

Anyhow, so we closed on our house. Everett turned 6 months old! :) And, for those of you who know the story, Feb. 29th is a very special day for Dylan as well. So, as a surprise, I got some prints of him and Everett framed for him and gave them to him throughout the day. I then told him after our closing that we had to scope out the Omni Mandalay for our friend that is a wedding photographer. So, Dylan went into M Bar to check out the scenery while I "scoped" other things out. :) While he did that, I checked us into the hotel and surprised him with an overnight stay. It was wonderful and relaxing. They must have kajillion bajillion thread count sheets and it was like sleeping on a cloud. We went to Jinbeh for dinner and completely spoiled ourselves, watched an in room movie, and even got breakfast in bed. We SO did not want to go work a 15 hour day on Saturday! Anyhow, here is Dylan's reaction when he realized we were staying. This smile stayed on his face for like an hour:

So, anyway, I'm starting to get tired and I know I've left a lot out. Like I said, email me and let me know, I'll do an update.

xoxo
Margot

Boooo RSV :(

2008-02-12T22:03:00.003-06:00

So, about that eventful weekend that I was telling you about. Last Wednesday Everett started getting a little bit sniffly. By Thursday, he was coughing, so we went to see his Pediatrician.

Well, the pediatrician said it seemed like he had a bad cough, so we just needed to keep an eye on him. He seemed to be feeling a little better by Saturday, and then, wouldn't you know it, around 4 a.m. on Sunday morning he woke up inconsolable.

Since Urgent Care didn't open until noon (and that was looking to be a very loooong 8 hours), we went to the ER. We got into the room fairly quickly, and then the waiting began.

Everett was diagnosed with RSV (yes, I know that he's been taking the Synagis, but the theory is that if he had not been having the Synagis it would have been worse). Because of his history, they decided to admit him for observation. So, we were in a room by around 2pm (yes, I promise that you're reading right...just do the math and you can figure out how THAT day went).

Everett stabilized, and we were able to take him home yesterday on oral steroids and his normal breathing treatments. We have added CPT to his routine every 4 hours.

So, his surgery this week has been postponed for 6-8 weeks. Yes, you're reading that right as well. This is how you can figure out what kind of week I am now having.

Anyhow, below are some pictures of his most recent hospital stay, short and sweet as it was.

Everett decided to add his own personal touches to his IV stand.

Mamaw trying to coax KP to eat.

KP giving in to Mamaw (finally getting that darn appetite back!)

Daddy & Papaw with KP...I don't know what Daddy is doing.

Daddy & KP

Mamaw & Papaw

Sleepy time...

xoxo
Margot

Everett's Baptism

2008-02-10T20:32:00.000-06:00

As many of you already know, Everett was baptized last Sunday, February 3. This was, of course, the last Sunday to baptize him before Lent, so we will call it the baptism of the procrastinators...well, of the procrastinator's children, anyway. :)

There were 4 boys total being baptized on Super Bowl Sunday. :) We'll see if that turns out to be fortuitous in any way later on. ;)

Brett and Jessica are Everett's Godparents. Brett was able to find some time during his busy SuperBowl Sunday to come hang out with us for a bit. :) He also ended up baptizing his sleeve in the process. :)

Jess was unable to attend, but we will forgive her because of the whole living in Japan bit. ;)

Both were pleased to be asked, and we were pleased that they accepted. I think that they will both fulfill their roles pleasantly. ;)

I have included a short, slightly truncated, video of the baptism. We had a bit of camera difficulty, and we caught our cameraperson (Mamaw) off guard a little, I think. :)

Everett went right to sleep as soon as the Holy Water hit his head. He stayed peacefully asleep through the rest of Mass, and then woke up as we were leaving. He got to say bye to Grandad Lynn and Grandma Sheri before they headed off to Hawaii, and got kisses from Mimi before she headed off to work.

Mamaw, Papaw, Brett, Mom and Dad all went to lunch after Mass. On the way to lunch, Everett became very animated in the backseat, just laughing and talking and gesturing all over the place. We think that he and his Angel were having a very involved conversation.

Anyhow, this weekend has been truly eventful to say the least. It appears that this week will continue to be eventful, as well. I will post the details later on, but please continue to keep our little KP (kicky pants) in your prayers.

xoxo
Margot

Pictures!! :)

2008-01-23T21:12:00.000-06:00

I know that everyone is interested in updates, but in the spirit of chronologicalness, I will start in the middle of last week. But, I will tell you up front that everything went well with Everett, and he is at home safely.

Last Wednesday, Dad and Frances came into town to watch Everett. They took him over to his Uncle Chris's house to have a fun day of playing.

They had a small ostomy issue, and supply problems (skin barriers + Texas heat = not a good idea), so they called Grandad Lynn to the rescue (have you noticed how Grandad Lynn just seems to be everywhere? :) ).

Of course, when we went to pick him up, Daddy noticed that Uncle Chris had Rock Band, so they just HAD to jam a bit. :)

Overall, I am told that fun times were had by all...now it is Uncle Chris's turn up at bat for the grandbaby factory. :)

On Thursday, Everett hung out with Mommy at work. He mostly slept a whole lot, and that was good because work can be kind of boring for little babies. :)

We went to preop on Friday in Fort Worth. Everyone was very nice and we left feeling like many of our questions were answered. When given a choice, Everett chose pineapple/coconut for his smell to fall asleep to. :) Sandy beaches here we come.

On Saturday, Everett went to Grandad Lynn's while Daddy went to work and Mommy went to Baptism Preparation Class. Meemaw came over to visit and everyone stayed nice and warm on that chilly, chilly day!

On Sunday, Mimi Candy came over to spend the night since we had to leave so early on Monday morning.

We left the house at 4am Monday morning so that we could get to the hospital in time for check-in. Mommy and Daddy and Mimi got to spend a couple of hours in the pre-surgery room with Everett before they took him to the back. Everett was in high spirits, and not at all upset that he had not eaten. The benefit of being at the hospital so early is that Everett did not have to skip any meals before surgery because his last meal of the evening is 8pm, and he doesn't usually eat again until 8am. I love that he is on a great schedule and sleeping through the night! :)

They took him back around 7:30am, and then the waiting began. Honestly, the time passed fairly quickly. They were really good about calling us every hour in the waiting room from the OR to update us on his progress. Around 12:30p, the neurosurgeon came out and talked to us about the surgery.

Everything went well. It turns out that Everett's cord was not tethered after all. What was perceived as "thickening" of the phylum was actually thickened arachnoid. The arachnoid is part of the sheath around the nerve endings. It was not compressing the nerves, but on the MRI it looked as if the phylum was thickened. The Dr. went through each individual nerve ending and found them all to be floppy. He is not sure what caused the thickening, but assures us that it is no longer an issue. Additionally, he tested all of Everett's muscles, and they all appear to be functioning normally in regards to nerve connectivity. This includes his sphincter muscle as well. So, all in all we have good news!

Waiting for Everett to get done with his MRI so that we could finally see him was EXCRUCIATINGLY long! But, the time finally came when our little man was wheeled out into his room on the pediatric floor.

He got a private room, and I was pretty jazzed about that because I had packed earplugs and everything in case we had a roommate. :)

Overall, Everett just slept a lot in the hospital. He certainly slept a lot more than Mommy did.

On Monday night, the IV in his arm failed, and we had to put another one in. The only good vein (as we have previously learned) was in his head, so they had to put his IV there. This time, they gave him a little protective cap that was just too cute. I have a picture of it on my cell phone, but I am having trouble getting everything on this computer to cooperate, so if you see me out and about and you really want to see it, just let me know. :)

All in all everything went well. Everett has been on Tylenol with codeine since Monday afternoon. It seems to be working fairly well. He still has little bouts where he could be in pain or just fussy, but they are few and far between. I tend to think they are more just plain old fussiness because he is still supposed to remain on his back as much as possible, and I think he finds that boring.

I am so glad that we got this done now. I cannot imagine trying to keep him down if he were even a couple of months older!

We have a follow up visit in a month where they will basically just check his incision to make sure that everything healed up well. The doctor expects no complications at all.

So, 2 down, 3 more to go. Tentatively, he will be getting his hernia surgery and his chordee repaired around Feb. 12 depending on the schedules of his general surgeon and urologist.

Sorry for the long update. I will try to update more as information becomes available.

xoxo
Margot

Still no photos

2008-01-17T14:24:00.000-06:00

Well, life has been busy in Lil Man's world, so photos have not been being uploaded in a timely manner. Sorry. But, I thought that an update would be more important at this juncture than photos.

As Bachan said in the last blog, Everett will be going in for surgery on Monday, January 21, 2008. We will travel for pre-op tomorrow afternoon, and then they will operate EARLY Monday morning. They will be cutting the phylum to release a possible tethered cord.

I spoke with the neurosurgeon today, and he said that he spoke with the two other members of his practice to get a feel for what they thought about Everett. They all seemed to agree that this was the best time for this surgery. Although there is not an obvious site of tethering in the MRI (which means that it is possible that they will go in and there will be no tethering at all), they feel that it is better to operate now rather than later. The reasons are twofold. One is that it will prevent any further damage from occurring if the cord is, in fact, tethered. Once damage is incurred, it is either irreversible, or requires more surgeries to repair, so prevention is the best option here. Secondly, he will have a better recovery at this age. Since he is not sitting up on his own yet, he will not object as much to lying on his back for the days required of him. Also, since he has a colostomy, there is no danger of fecal matter getting back into the incision and infecting it. All in all, this is the best time to get this done. I will post more once we are out of surgery.

Then, here is how his surgeries will work out. After he heals from his spinal surgery, he will go in for surgery to repair his hernia. The doctor prefers to repair both sides at the same time to avoid having to go in again later.

About 3 weeks after his hernia repair, he will go in to have his pull-through done. Due to his lack of coccyx and shortened sacrum, the doctor is unsure how successful this operation will be. We are hopeful, but we will not know anything until around potty training age. His colostomy may also be moved at this time since he has a high IA, and the doctor is unsure of how much colon he really has to work with.

Then, we will do a bunch of dilation, and once he is dilated to the proper width, he will have the surgery to reverse his colostomy. Then, until potty training age, at least, we will have the normal poopy diaper situation. :) Who knew that we would be looking forward to poopy diapers so much. Someone please remind me of this when I go to change the second one. :)

All in all, Everett does not seem concerned at all about the upcoming surgeries. :) He is his normal, happy, stubborn, hard-headed self. :)

So, please keep us in your prayers this upcoming week. And I will keep you informed as much as I can. I will also try to teach Dylan how to post photos so that you are not deprived of seeing how huge our Little Man has become. :)

xoxo
Margot

Jan 12 update, no photos

2008-01-12T13:57:00.000-06:00

Mom, Dad & Everett have been busy since they returned from California so there hasn't been time to post. Brother Goose had so much fun at doggie hotel that he just wanted to sleep for the first couple of days he was home.

Everett had a wonderful time on New Year's Day meeting Bachan's side of the family. They thought he was just grand. He also met his new cousin Nadia, born on November 4th. He was introduced to new people, sights and smell. The next time he's in California he might be old enough to sample the food.

On January 9, Everett met his neurosurgeon... now that's how many doctors? The diagnoses of caudal regression was confirmed. He has a very mild case that shouldn't cause him any problems, though they will continue to monitor his development. His spinal cord is just fine. His sacrum is a little short so the doctor said he'd have to make sure to tell the surgeon if he has back surgery when he's an adult. They start counting the vertebrae from the bottom and could miscount if they aren't made aware.

He does have a tethered spine and is scheduled for surgery on January 21. The neurosurgeon says it's not a complicated surgery. Everett should be out of the hospital after a day or two. He can't have any other surgery done for 2 weeks afterwards. The doctor is not concerned about this operation healing as much as it getting contaminated & infected if the "pull through" is performed too early. Everett will have another MRI done after surgery, while he's still under anesthesia.

On January 10, Everett had his 4-month checkup. He received a normal immunization shot and proceeded to have a reaction to it (same shot combo he got earlier with no reaction). That meant a trip to Urgent Care. They were able to bring his fever down by the time he left, but he was so upset he got a hernia. The UC doctor was able to push it back in and told Margot to contact Everett's general surgeon and pediatrician to let them know.

Well, that's about all for now. Mom will update as she gets a chance.

Bachan