Steps!!!

Bryce took his very first independent steps last summer while we were in Michigan for the Conductive Learning Center's summer camp.  We were at the toddler play area at the mall and if my dad hadn't happened to have been standing right next to me, witnessing them, I truly wouldn't have believed my eyes.

As with all things Bryce, progress is steady but exasperatingly slow.  And since those steps he's continued to stand all by himself more and more, with increasing success and confidence.  He's also continued to work on taking a step or two and more recently 3 or 4 and, just very recently - and only very occasionally - as many as 5 or 6.

Try as I might, getting this on video has been impossible.  He'll do it once, completely out of the blue and then fall trying to do it again for the video.

BUT today, I finally got it!  So now that it's captured on video, posted to the blog and will soon be shared to Facebook, it's officially official - Bryce is taking steps!

(By the way, please don't judge us but we like to rock out before bedtime - hence the very loud background music - wink, wink)

I can't even express how joyful and grateful this makes my heart, y'all.  To be completely honest, there were months, years really, that I didn't know if Bryce would someday walk on his own.  Last summer when I saw him take those first steps I thought ok, he'll walk some but probably still need a walker or canes.

But seeing the fierce determination in his sweet little face when he's taking those fought and fraught for steps gives me new found hope and optimism that maybe someday he'll walk - really walk.

It's not like I think the end all, be all is walking.  It's just that life is harder if you aren't an independent walker.  Bryce's walker prevents him from walking on the playground, walking in and out of our front door, getting onto the bus by himself and so much more.

And as his mama, I think he has enough hardness in his life.  Wouldn't it be nice if this particular struggle was a part of his past?  I think so.

Miracle League Baseball

Bryce participated in his first baseball game today. It was only 2 innings long and no one got out but he didn't notice. He batted for a home run in the first inning, with just a little assistance from yours truly. 

After I was able to escape the field he did well on his own, with his buddies, and enjoyed a second inning RBI and some fielding with his coaches and buddies in the outfield. 

I had pretty much given up on ever getting the chance to watch Bryce play my favorite spectator sport. Today was a dream come true. 

I can't wait to see how the weekly games improve his independence and walking endurance. 

-one proud mama

A family selfie - one full face and several partials will have to do. 

What to do, what to do?

Why is it that anytime you're supposed to relax and take it easy life makes it impossible to do so?

Turns out that Medicaid will not be paying for Bryce's in clinic therapy any more than they will pay for his in home therapy - which is not at all. I am so disappointed because I thought we'd finally figured out a way to get him the therapy he needs over the summer between when he turns 3 and when school starts in the fall.

I have to be careful though because Medicaid does help pay for doctor's visits and Botox treatments when our high deductible primary insurance falls short, which is often.

I got in touch with said insurance company last week as Bryce's speech therapist said that they may cover more than the current limit of 12 therapy visits per year based on his neurological diagnosis. After essentially copying the policy copy back to me they said that in very, very rare circumstances they would cover up to $25 of 10 additional therapy visits per year, after his $5000 deductible has been met. Well, gee - thanks so much! At $110 a visit they're basically agreeing to a very expensive discount program.

So we're back to square one. Except that it's January 2nd and Bryce just completed his first therapy visit of the year, leaving 11 covered visits for 2012. I talked in depth with his physical therapist this morning during her visit and feel like we have a better handle on our limited options.

We could choose to decrease PT from 4x a month to just once, keep ECI Speech at weekly since insurance doesn't pay for it anyway and stop private Speech, Developmental Specialist, Dietician and Occupational Therapy all together. This would mean that we would save enough visits so that he could still be followed by a PT once per month for all of 2012. A far cry from the therapy schedule he's had for the 2 years since he's been home from the hospital. (How is it even possible for time to move so quickly that Bryce has been home 2 years??!!)

Or we could stop everything right now, except ECI speech, and save all 12 visits for a semi-intensive summer therapy regimen in a clinic setting somewhere. But this would still be limited to PT and leave OT out all together.

OR we could just continue to use all of the therapy we have available from ECI: PT weekly, Speech weekly, OT and Developmental Specialist each twice monthly and Dietician every other month, until he turns 3 in June. This would mean that we wouldn't have any covered therapy for the remaining 6 months of the year but as his PT pointed out, the summer will likely go by fast and we may need a therapy break by then anyway.

And with the new baby on the way we really have no business making concrete intensive therapy plans for six months from now. For all we know, I could be on bed rest or - God forbid - we could be back in the NICU. At the very least, we know that I'll be making weekly visits to the OB for checks beginning at week 13.

He'll get therapy from school beginning in the Fall and through the end of the year. We're sure it's not going to be everything he could ideally use but it's certainly better than nothing. And that gives us 6 months to try our hardest to get him walking (with a walker, independent walking is likely much, much further out for our Bryce) before he goes to school. That would make me, his PT and I'm sure many others feel just a little better about our baby going to school.

We still have a lot of talking and deciding to do. At the end of the day the last thing any parent wants is to feel like they did anything less than the most they could muster for any of their children. I want nothing more than to continue to give my everything to Bryce but somehow I have to save some of my fight for the baby on the way. And maybe a little for work, Caleb and me too.



Your thoughts, input, opinions, experience and comments - as always - are not just welcome, but encouraged and appreciated!

Enough with the Assesments Already

We're running on assessment overload in the Moline abode these days. Bryce has endured three in the last 10 days and though he smiles and charms, I smile and grimmace.

I've just about had enough of people telling me how far behind he is. I know it's their job and I know it's for a greater purpose (setting goals, developing therapy plans, etc, etc) but enough is enough already.

Believe it or not, I didn't come here today to rant, rave or complain though. I came to update. I thought our sweet and supportive family and friends would want to know what's in the pipes.

Tomorrow morning we begin our endeavor to get Bryce into Leander I.S.D.'s Early Learning Environment. I think I've explained before that this is a school district program for children with disabilites. It should provide a classroom environment of children who are 50% disabled and 50% normally developing for up to 4 hours, 5 days a week. The idea is that the kids get their therapy there as well as an opportunity to learn from and be motivated by the other 50%.

So tomorrow we'll start what I imagine to be a fight. While I'm (too?) sure that Bryce will qualify for the program and find it likely that he'll qualify for their "full time" schedule, I'm anticipating a show down over what services he'll receive this coming summer. Since he'll turn 3 after the end of the school year and ECI will not be allowed to provide therapy services after his 3rd birthday.

I'll attend the information meeting tomorrow. Likely schedule his assesment for early 2012 and prepare myself for battle. Wish me luck because from what I understand, I'll need it.

Other than stressing about Bryce going two to three months without therapy, I'm stressing about an EEG tomorrow. I called Bryce's neuro last week after Dr. Fasci, the developmental pedi who specializes in neurology, saw him do his little spacing out number the previous Friday and suggested we let his neurologist know. They called back and said that they wanted to do an EEG before his next scheduled botox injections - which just so happen to be bright and early on Monday morn.

I'm feeling confident that the EEG will show no signs of seizure and that we're all just erring on the side of caution. But stressing, none the less.

So we'll do both tomorrow and hope that Botox goes as scheduled on Monday because we're seeing increasing signs of the last dose wearing off. Bryce is a little wobblier when sitting due to the increasing tightness in his legs and hips. And his right hand is staying more and more fisted, more of the time. It's so hard to see how frustrating this is for him. It was one thing to watch him struggle with "righty" before he ever had real use of it but a whole other thing now that he's had a couple of months of decent use.

I'll do my best to keep you all posted as we receive the results and as I know more about what to expect from the school district.

Until next time, thanks for checking in!

December Already

This year has seemed to fly by even quicker than the last. I can't believe it's already December and time for Christmas preparations. It seems like just yesterday we were visiting Dr. Fasci for Bryce's first developmental assessment. But alas that was September and our 3 month follow up is this Friday.

I'm looking forward to bragging about how Bryce now can put a ball into a ball drop toy and will actually - occasionally - hand you an object. It's the little things in our house that get us giddy with pride!

The increased speech therapy has afforded us some new perspective and though "up" is still Bryce's only official word, he is making an obvious effort to sign and communicate more. I only hope he doesn't get too frustrated by how difficult it is before his communication improves.

And to further prove the lightning fast passing of time, in just two short weeks I'll be celebrating my 32nd birthday with a visit to Dell for Bryce's next round of Botox injections.

Although I'm so excited about the gross motor skills improvement we've seen since the last injections three months ago and hopeful for fine motor improvement with the higher dose to his right hand planned for this round - I still get that sick feeling in the pit of my stomach when a visit to Dell's surgery center is imminent. Of course, it doesn't help that i still have awful flashbacks of holding him as they put him under last time and this time it'll just be me with Bryce. Oh the things a mother does.