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!

xoxo,

Botox Baby

As usual, life with Bryce is hectic.

In the last six weeks we've gone to two new specialty care clinics at Dell: orthotic (bones, braces, etc.) and spasticity (Cerebral Palsy, neuro, high tone issues...). The clinic setting suits us well - despite half day visits that start with 5 a.m. wake up calls - because of the team approach. It reminds me so of our days in Dell's cutting edge "family centered care" NICU. We see a specialty doc along with a therapist or two, often another specialist as well as an RN and social worker. It's quite the experience.

Both times Bryce has fallen asleep waiting to see the "big man" and one of those two times I've felt like my opinion, my perspective, my questions ...well, mattered. Outside of the NICU at Dell, despite many, many, MANY doctor visits with and for Bryce, I've seldom gotten that feeling.

It was surprisingly unnerving and endearing when Bryce's neurologist teared up at seeing how much has begun doing since her last visit, six months ago. She and I have had the hardest relationship, pushing me to the brink of sanity more than once. She's not the touchy, feely type but that wasn't it - I just never felt that we got the time of day. But at the clinic she took the time to sit (literally) and look me in the eye. She explained very simply that it brings her to tears to see how far he has come, how much he has overcome. That reading his history, seeing him a year ago as a 14 month old infant, she never would have imagined he'd be who he is today.

Well, me either. I mean, I've fought for it, encouraged it, hoped and dreamed for it but always with that bit of hesitant optimism that is ingrained in me.

And let's be honest, it is so easy to get caught up in the never ending daily to do lists: one hour in stander, 20-30 minutes sitting practice, 20 minutes on all fours, spio (compression garment) vest, hand splint, messy play, reflux meds, vitamin, signing practice, never stop talking to him...plus the usual feeding, cleaning, diapering, dressing, snacking, napping, grumpy time.

This is a hard job, ya'll but I love it. Never does a day go by that I don't think how lucky I am, how much I love this little boy (no longer a baby), how astoundingly proud of him I am.

Well, another first is on it's way. And it's not what you think, what strangers never fail to ask after asking his age...he's not quite to walking. Soon enough, I see it in his eyes like the day I knew he was finally off the ventilator for good - that determined look that all at once scares the sh!t out of me and swells me with pride I never could have imagined for someone outside of myself before Bryce.

No, I'm talking about botox, baby. As usual, I'm cautiously optimistic. The neuro is rather confident that shots of botox directly in the muscles of Bryce's right shoulder, forearm and hand, as well as both hips, may give him the opportunity to escape the tightness (aka spasticity, high tone) of CP enough to develop the use of those areas enough on his own to sort of overcome the troubles of CP.

It's a scary decision to make. There is no guarantee and botox is actually a poison at its root though the makers and doctors adamantly declare it's safety. We'll start with a first round, this Monday morning, expecting the peak of effectiveness to take place about six weeks later and the effects to wear off around three months.

They took video of him with two physical therapists at the clinic so that we can be sure of results, as mild as they may first appear. If we are comfortable, we'll follow up around then with another round and presumably continue with quarterly rounds for the foreseeable future.

So off to Dell we reluctantly will go on Monday morning. They'll do the shots under light anesthesia (gas) so as not to traumatize him with the painful 12-15 direct to muscle injections. He should wake up shortly there after and if all goes as planned, we'll be home in time for lunch. Wish us luck!

The Long Awaited Sundae Video

Sorry it's taken me so long to get this up but I think you'll find it was worth the wait.

We took Bryce to dinner at Buca di Beppo on the night of his 2nd birthday. The food and the service were so-so at best but it was really nice of the waiter to surprise us all with this birthday sundae for Bryce.

You can pretty well tell from the video that he's never had anything like this before. He's had ice cream on a select few occasions and he's enjoyed unsweetened whipped cream on many occasions but never even a bite of a brownie.

The sugar made him a little emotional as you'll see...enjoy!

Bryce's New Trick!

Bryce has just this week (despite being sick) mastered pulling to stand inside his crib. He's very proud, as you can see on his face, and loves to show off!

Not bad for a micro-preemie, huh!?

Can you believe this!!??

It's been months and months of long, tortured therapy but we are well on our way to having an accomplished "sitter" in our household!! Go Bryce Go!