Sunday, December 21, 2008
Thursday, December 18, 2008
Updates
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
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
Monday, December 8, 2008
Here we go again...
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
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
Monday, December 1, 2008
Thanksgiving 2008
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).
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
Sunday, November 9, 2008
A day with Mamaw and Papaw

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.

Papaw and I walked a long ways
Monday, October 13, 2008
State Fair 2008


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)


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




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.
Sunday, September 7, 2008
KP is on the run
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...
...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

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
Friday, August 29, 2008
Happy Birthday, Prince Everett!!
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
It's been quite a year, and I wouldn't trade it for anything in the world!
xoxo
Margot
Friday, August 8, 2008
The beginning of the end
WE'RE IN TROUBLE NOW!
KP took his first tentative unassisted steps
on August 6
And two days later he's on the move
KP took his first tentative unassisted steps
on August 6
And two days later he's on the move
Monday, August 4, 2008
Wow, what a month!
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
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
Monday, June 16, 2008
Pictures, Pictures, Pictures
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
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
Friday, June 13, 2008
No more ostomy bag
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
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
Wednesday, June 4, 2008
KP has his first tooth and more
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
Sunday, May 4, 2008
Has it been 2 weeks already?!?
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

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.


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...
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