Just Keep Swimming, Just Keep Swimming...

We are still THRILLED with preschool, let me just say!

Harrison really is just swimming along, at his own pace of course, but making progress with every little stroke.

We met with his teachers and therapists this week, and not only did they all have great things to say about how hard he is working and how far he has come in just a few months, but, most importantly, they all agree that this integrated classroom in our local public school is, yes, the right placement for him. WHEW!!! I almost cried. I never know- I know he LOVES being there, loves his friends and all of the people who work with him, loves feeling like a regular kid...still, I always wonder, is he getting enough? I actually think he is- the staff there are absolutely amazing, so impressive, and we feel so lucky to live in this town. And the social piece I really believe is probably boosting his progress, because he is so happy and he thrives on the attention from his classmates- that would make any of us more motivated, yes?

So, take it one year at a time, right? If I think too far ahead...well, I just won't. We want him to be in the place that is best for him, and we hope it where he is now. Lucky for him, his dad happens to be an expert in the field of special education and has good connections, and he will make sure Harrison is getting the very best. (check out www.amegoinc.org  and also www.bestclinicalnetwork.com)

I went to John's school to take pictures for some marketing and pr material, and I'll be honest, it was difficult to be there this time. I don't know how he does it. I know I couldn't. I used to love working with kids and adults with special needs. Not interested anymore. His clients are lucky to have him on their side.

Impressive Act of the Day

Harrison is sooooo ready to get rid of this trach. For those of you who don't know, Harrison's trach has been "capped" during the day pretty much since he started preschool, with the exception of 2 weeks fighting a cold. This means he is not using it to breathe, so he is getting used to breathing the old fashioned way. Good practice. And harder than for the rest of us, since he has to physically push the air around the trach tube and over his vocal chords. Anyway, he makes A LOT of noise all the time, loves the sound of his voice (he was pissed when he first got the trach and realized he was silenced...like Ariel!) and he experiments with his voice all the time. So lately, he has been holding his breath, very deliberately. For a split second I wondered if I should be concerned, and then I realized, there is a method to his madness. He is, in fact, taking deep breaths and holding them (picture getting ready to dive to the bottom of the pool) to gear up for some major noise. He does it two or three times, and then he starts talking, singing, whatever, and he does not shut up! Pretty smart, huh? And apologies to those of you who have been victims of his very loud, ongoing interruptions when you are trying to talk (Rabbi, John and I enjoyed your seder, we were listening!)

Harrison and Roger Ebert

I tried to share Roger Ebert's blog post here but could only post the link below

http://blogs.suntimes.com/ebert/2011/05/the_way_to_a_mans_heart_is_thr.html

I did not know this about Roger Ebert, that he has a G-tube for 100% of his nutrition since he recovered from his illness. I am grateful that he has shared it and shown the masses that it is really not that bad (contrary to how I felt when I learned we would be dealing with this when Harrison was less than 2 months old...ick!). We actually have not run into too many people staring when we feed Harrison in public, but I did wonder at first what people might be thinking. Now I could honestly care less what they think about that or the trach, and actually anyone who has commented or questioned has done so in the most sincere and polite way possible, which has made it very comfortable to explain or talk about. Thank you, kind strangers out there.

Speaking of Harrison's feeding issues, we have recently tweaked his diet some because he has not gained weight in a long time, and actually has lost some since we started adding baby food to his formula (which replaced some of the formula to keep the volume consistent). So now he is getting more than he was, plus a new formula (different type of Pediasure) with extra calories. Personally I think he is not gaining because he has been working so hard physically and making so much progress, and he is just burning calories faster. He has gotten much taller, and leaner, thus much bulkier for mommy to carry around everywhere, especially since he is dead weight. I'm all for helping him gain weight, but I really hope he starts walking soon!  In time, I guess...I know it will happen. Goodness knows he is trying.

He is also getting much better at learning how to eat...using his mouth! He enjoys lots of flavors and textures, and he is getting better at using his tongue to taste and move things around in his mouth, and swallowing little bits, and even starting to play with food and actually bring his messy hand to his mouth! I know, big deal, right...but in this house, these things are HUGE!!! Luckily for Harrison, the G-tube was placed for reasons that no longer are a factor in his health, and our goal is to get rid of it one day.

What has been incredibly fascinating through all of his developmental progress is the new respect I have for biological function, and the micro- steps that are involved in every move we make, of which we are not even aware. It is incredibly amazing to recognize and to watch human development play out in super-slow motion! I will probably come back to this revelation often...

Floating Comfortably, Dare I Say?

Harrison is in preschool! Really, truly in preschool! Our local public school in an integrated classroom, with absolutely amazing teachers and wonderful therapists- we are soooooo lucky to be in this town!  So lucky!  He is so happy being with regular kids in the controlled chaos of a normal classroom. We can only hope that he can continue here, stay in town, keep making friends in the neighborhood, feel like a part of the community. I truly believe this will help him thrive and reach his potential, exceed it even. Since the day we visited he has been bombarded with new friends, two in particular who always vie for his attention and the privilege of being his helper. Wow! They love him, they all want to be his friend, and all they see is a cute kid who needs some extra help to be a part of the class, and they have welcomed him so enthusiastically. All the moms in the class say the same thing..."All he/she talks about is Harrison, Harrison, Harrison!" That feels so incredibly good.

He got to start right after his 3rd birthday instead of waiting until the Fall, so that he would not lose time with his services (physical therapy, occupational therapy, speech therapy). For now he goes to school with a nurse...not forever though. We have lost some nursing hours (thank you Mass Health) and one of his nurses took another job so we will have to find someone else for the Summer and next Fall, but other than that, life feels a little more relaxed. It is the first time he is in an environment where I trust that everyone involved in his care actually knows what they are doing! What a nice change from constant battles with the hospital, nursing agencies, insurance, and medical supply company.

So here we are. Harrison continues to make slow but steady and forward progress with everything that we take for granted. As a friend of a child with autism said to me, we see progress a lot differently than most people do. A smile, eye contact, playing with food, playing with voice, playing with anything...each is such a huge step for us, but he is the hardest worker I know and I have the utmost confidence he will keep going, and going, and going...