Whew...

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

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...

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

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

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...

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

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