Thursday, September 22

It's Almost Supposed To Be Birthday Time Again

Time sure does fly. People always say that but it never ceases to surprise me how true it is. Bryce is now 27, almost 28, months old but Monday (9/26) will be the second anniversary of the day he was supposed to be born. So our almost 2 1/2 year old is only just now supposed to be turning 2.

It's funny how I'll never be able to forget how early he was or that he shouldn't be as old as he is. But it's impossible not to also let the day to day bog you down in how far behind he is and how much work we have yet to do.

It's been a pretty mild few weeks on the home front. Bryce has added a new therapist to his menagerie - Suzy is what was titled Early Intervention Specialist but is now titled Developmental blah, blah, blah something or another. Sorry, but the new title is even longer than the old. Basically, she helps us troubleshoot how to get Bryce's play skills up to a level closer to either his actual or corrected age. He's still not stacking things, pretending, putting things in/taking things out (except to put in his mouth) or handing things over. But on a positive note, he does enjoy the heck out of banging stuff!

It's a work in progress that I'm beginning to wonder if it isn't related to other factors. Bryce's eye sight, physically, is pretty normal but his CVI (cortico visual impairment) means that his brain often times has trouble comprehending what the eyes are seeing. Additionally, many preemies and CP kiddos have trouble with sensory input. Usually they are over sensitive to it. But we don't know - since we can't ask Bryce - how his CP effects his senses. It could be that his eyes don't fully comprehend things that he sees and touches and it could also be that his hands feeling that thing don't give him enough input about the object either. Or it could be a complicated combination of both. Either way, he still obsessively puts EVERYTHING into his mouth. Which means he doesn't color with crayons or play on the ground at the park, it limits his play even more than he limits his own play.

But I'm glad for these new revelations since understanding is always the first key in unlocking the puzzle of Bryce.

Other than the new therapy on the schedule it's been surprisingly mundane around our house since Bryce's botox. We haven't seen huge improvements but he certainly seems to be looser in his legs and I know that his right hand is so far behind, and muscle memory trained to be fisted, that it would take many, many months before we'd see a real change there. We'll be visiting with the neuro in two weeks to see what she thinks and get her opinion on another round and/or higher dose. Time will tell.

Next week marks the time of year that all preemie moms loathe. Fall. Flu season. It's funny, because this has always been one of my favorite times of the year. I love the fall weather, the pumpkin patches and the feeling of the holidays being right around the corner. But they'll be forever tainted by the scare of germs.

We'll have our bi-annual check in with the pulmonolgist and I'm so hoping we won't have to start up the daily nebulizer treatments again. It's been a nice summer off from that nightly fight.

We also have Bryce's first developmental assessment scheduled with a Developmental Pediatrician who specializes in Neurology. It's my understanding that she'll spend a good hour or two with Bryce and I, seeing what he does and asking me a lot of questions. She'll then assess where he is developmentally, compared to his actual and adjusted ages, and make some recommendations for how to catch him up.

I'm not going to lie, I fought for his assessment because I think it's important to have a clear understanding of what we're working towards and just how far we have to go. But I'm so nervous it's keeping me up at night. No mom wants to hear that her child is a year or more behind, especially at age 2, but that's what I'm preparing myself for.

Please keep us in your thoughts as this week looms just over the horizon. I promise to return more quickly this time with the results of our two appointments next week as well as the neuro follow up on Botox.

Thanks again everyone for keeping up with us - it means the world!