Sunday, April 17, 2011

More doctors, sunny day, soccer diva...

Walter and I feel a lot of relief in knowing we made it to Isaac's first birthday. Some days and many nights were spent wondering how we were going to keep plugging along with our crabby, high needs boy. But we did it! And I can officially say that our days are better, nights are questionable, but as of Thursday I have an explanation for why our nights might be so miserable.

Because Isaac and I love hanging out in waiting rooms and meeting new doctors, we saw an ENT for a consult. The recommendation for this came from the Feeding Team because apparently a lot of the kids in the program have enlarged tonsils and adenoids. I was going to hold off on scheduling the appointment, but I called and we got in right away which also meant that Isaac had three appointments in one day. Turns out it was a good thing we went because apparently Isaac's tonsils are "enormous" which also means his adenoids are enlarged, and what does all of that mean? Well, he needs them removed, but she won't even consider the surgery until he's eighteen months. Most likely, this is why he is a "mouth breather" and drools a lot, and snores (really loud) and breathes really loud, and the reason for why he still needs to sleep upright. She actually said it's a good thing that I've kept him in the bouncy seat because otherwise his tonsils would constrict his airway too much. This could also be one of the reasons he's having trouble eating.

Did you know there's a nifty tool that can suck ear wax out of your ear? Yep. Isaac can tell you all about it. Just an FYI, ENTs have really cool tools. The doctor discovered fluid in his middle ear--so technically we have three ears??? So, I was very confused, and for the record, this does not mean he has an ear infection, because it isn't that kind of fluid. We were then sent over to Audiology where of course I was questioned as to why I did not have his hearing test repeated after he failed the one in the hospital. Obviously I couldn't tell them that I left a very curt message for the people who kept bugging me to have it done and told them in no uncertain terms, that they should never call me again because I was tired of them calling me and he was having a surgery in a few months and I wasn't worried about his hearing. Yeah, couldn't share that little bit of information. With that said, I felt really fabulous when they tested how his ear drum moves and one of them doesn't really move. We have a follow-up appointment in six weeks or so to check the fluid and then he'll also have his hearing checked that way I'm not a delinquent mother. I think I'll schedule an appointment for Isabella too.

The ENT also referred us to have a sleep study. Or in Isaac's case, an awake and scream study...that should be interesting. She also referred us to Genetics, because she feels that we need to rule out any of the syndromes related to Craniosynostosis, so we have that appointment in June. I thought about just skipping genetics altogether assuming it was important only in the case that we would have more children, which we aren't. But after asking another doctor, it sounds like a good idea regardless of the fact that there will be no more babies in our house unless they are visiting.

We left the Cleveland Clinic just in time for Isaac's one year check-up. Where he was totally bummed about getting some shots but very excited to show off his clean ears to Dr. Leslie. Between the two appointments he made out pretty well with two tongue depressors and two stickers. This appointment also confirmed that he needs physical therapy, which I already knew because at this point I'm basically a doctor. No, actually he's had a curved spine since he was born and all this time I've been like, "what's up with his back, don't we need to do something about his back?" So yeah, now we do.

It turns out his stool sample is completely normal which means his pancreas is functioning as it should. Delivering the poop to the lab was quite an adventure. Try explaining to a stubborn three year old who has her own plans, that you have time sensitive poop to take to the lab. And then try explaining that this time sensitive poop only happens once a week and therefore, this poop is extra special and important. Yeah, it didn't go over very well and there were many "poop" related questions until I reached my limit and said there was no more talking allowed until after the poop delivery was successful.

And after all of that we went to OT and Isaac did quite well. He didn't gain any weight this week but they weren't worried because last week he did really well in terms of weight gain. I'm really glad we're working with the Feeding Clinic. The Occupational Therapist, Dietitian, and Developmental Psychologist are amazing. I don't think I could handle the stress of feeding Isaac without their support and encouragement. Feeding Isaac means daily and weekly we take two steps forward, one step back and that can get really discouraging. The good news is that he's consistently eating two ounces of pureed food a day and anywhere from half an ounce to two ounces of fortified whole milk. I know, it doesn't sound like a lot, but for him, that's some major success.

Last Sunday we had the special treat of a beautiful day and spent just about every minute of it in the backyard and later in my parent's backyard for our first outdoor dinner of the year!

Mommy, watch my beautiful dance!

Isaac wasn't too thrilled with the day.

Mommy, stop taking pictures of me!

Mommy, take a picture of this really cool rock I never did see!

As you can see, those six ounces Isaac gained a couple weeks ago went straight to his belly.

Soccer diva

A mad Isaac (he didn't want a hat on his head and is obviously very good at folding his body completely in half)

Mommy, I'll take a picture of guys! Let me take a picture! I want to take a picture! 

I walked Isaac around and around the yard and the woods and the driveway....finally he fell asleep...

Some quotes: 

Repeat the following scenario as many times as you can possibly imagine for one day...
-Isabella, when I'm done nursing Isaac we're going to go. Did you hear me?
-What did I say?
-I don't know. 

-Isabella you need to go to your room and you can come out in five minutes.
-I don't like five minutes, I like ten minutes. 
-Even better. I'll see you in ten minutes. 

This one happened about a month ago but I keep forgetting to write it down...
-Oma, that's not how you spell 'Maya'
-How do you spell it?
-You just have to look on Sarah's blog! 

-Mommy, after you had Isaac your belly got smaller, and smaller, and smaller until it zipped right up!

As we were pulling out of the park yesterday, a high school student walked by with his jacket open and no shirt on and I heard Isabella say, "zip it up, man." Then she asked, "mommy, why is that man walking around showing his nurshes? I never want to see that man again."

Next time I'll share pictures from Isaac's birthday.

1 comment:

  1. Beautiful pictures! I'm so glad that you guys are hopefully on the path to figuring out some answers for Isaac, and thrilled with the progress he's made so far! The pictures of Isabella made me laugh, as did her conversation with Oma :D