Finally...

I know I promised an update a week ago today, there's just been a lot to think about. I guess I wasn't (and still am not) sure how to write this post.

Things with Bryce have - I'm just gonna say it - always been a struggle. I guess I'm accustomed to that. But lately we seem to have hit some sort of tipping point where it feels like everything is just slowly and surely slipping out of my grasp. He seems to be getting older faster than is possible and I still don't feel good about my decision to continue to push with all of the therapy ECI will provide until he turns 3 and then essentially give him the summer off. I may be coming to terms with it but I don't have to be happy about or give up on other options.

Which is why I've been working myself crazy looking into other programs that might fill this gap. I've almost finished the lengthy process for the Children with Special Health Care Needs program application but am still waiting on one last document from the state to arrive before I can mail it off. The hard part is that I know it's a long shot, I know there is a waiting list and we have to reapply every 6 months or he gets booted to the back. But I'm desperate and my next resort will be weekly bake sales or something. Hmmm, I wonder if that would work?

In more positive news, Bryce had his hearing screen at Dell this morning and though he was awfully hard to read the audiologist felt confident that his hearing isn't what is holding his language back. Consider that box checked.

And after my dad turned me on to this new study finding that babies learn a great deal about how to talk from watching your mouth move, I made an appointment with a low vision specialist for a few weeks from now. I'm hoping that maybe she can give me a better idea of what he sees, what he doesn't and how to help. Bryce's vision instructor does this to a degree but she had mentioned some time ago that this report would help her help him better as well. So I'll consider that box unchecked but in progress.

And finally, on to Baby on the Way (BOTW). Today marks the half way point with BOTW to where I was the day Bryce was born. It's hard not to have anxiety about that. I'm just a hopin' and a prayin' that I'm closer to about a third of the way with this one.

I go back to the perinatologist (Maternal Fetal Medicine doctor) on Tuesday to finish up the nuchal translucency screening. BOTW wasn't quite big enough last week but supposedly doubled in size this week so should be plenty big enough by Tuesday. We'll also be scheduling a cerclage that day.

I can't say I'm excited about the cerclage. At first it looked like a given, then my OB didn't seem too concerned but the peri. is adamant that it be done by 14 weeks. Oy vey.

In case you're not up to speed - and for your sake I sincerely hope you aren't - a cerclage is an in-hospital day procedure where they put a stitch in your cervix to help prevent preterm labor. It's mostly used in cases of incompetent cervix (I deplore that term but don't have another and anyway that's fodder for a whole other post some day). It carries some intrinsic risks since it is an invasive procedure. But this doctor has a lot of experience doing them and as long as the procedure goes well it will reduce my risk of preterm labor significantly. The cerclage is supposed to be removed before labor begins and from what I understand, if it isn't not only will it hurt like hell but it'll mean a c-section. Just another thing to freak out about as far as I'm concerned, but I digress.

So in addition to the cerclage at 14 weeks Caleb will have to begin giving me the 17P (17 alpha-hydroxyprogesterone caproate) shots - in the rear, weekly for the remainder of the pregnancy - which will further reduce my risk.

And they'll check my cervix like a teenager checks Facebook. If something pops up it will be taken seriously and acted on accordingly.

Hopefully, all of these measures, coupled with my own unfortunate first hand knowledge of preterm labor, will keep us safely in the clear to at least 32 or so weeks. Which would be not ideal but so, so, so, so, so much better than 24!

And so that pretty much brings us up to date. Minus all of the boring details about how we don't currently have any actual maternity coverage and how paying the premium on the plan that will *hopefully* provide it beginning in Feb. is going to make us bankrupt, anyway.

My plan for now is to just going to keep on keepin' on. Because whatever has been thrown at us to this point we've somehow managed. If we have to live in a box but can provide what these babies need then so be it.


xoxo,

Fun with Numbers

As much as I do love sarcasm, I wish today's title were less tongue in cheek.

After spending the better part of an hour on the phone just now, calling one number to get a "This number cannot be connected as dialed message," then calling another number to get another number where they gave me...you guessed it...yet another freakin' number! After several calls I finally spoke to an actual person, a nice one at that - I'm so lucky!

She was pleased to inform me that Bryce has been on the Medically Dependant Children's Program's waiting list since Sept. 18, 2009 and this August will be considered to have been on the list for 3 years. At this I allowed myself to get a teensy bit hopeful, maybe, just maybe, he was getting close. Then she burst my tiny bubble by informing me that of the 40,000 children on said list Bryce is currently number 24,281.

I can't help but ask the obvious here. What is the point of a waiting list for a children's program if it's so long that they're barely children anymore by the time they reach the top? Errggh.

I swallowed my fury and politely asked if there is anything we could do to get moved up on the list. She .... wait for it ... yep, you guessed it, didn't you? She gave me another number. Okay, now we all just have to get a good laugh out of this because if Bryce's life thus far has taught me nothing, it has taught me that a good laugh, no matter the circumstance, is almost as good as drugs or alcohol. And since Baby On The Way (as I'm now affectionately referring to the bean in my belly) certainly doesn't need to start such experimentation this early on, a laugh will just have to suffice.

So, long story too long, I called the last phone number, where I applied for Personal Care Services to get someone to take an interest in helping me help Bryce get the services he needs. But not before being given one last number, a ticket number for my call...oh, and the number to call back in TWO weeks if someone hasn't called me yet.

Wish us luck!

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!

Good News!!!!!

While I was at the doctor yesterday Bryce's neurologist called to let me know that the results of his EEG were normal. I felt like that would be the case all along but it sure is nice to have the definitive results.

And in other good news, the reason I was at the doctor yesterday was for a sonogram. We're excited to announce that I'm about 8 weeks pregnant! There are lots of hurdles to jump through, decisions to make and changes to follow but the official due date is currently August 4 - which just so happens to be our 11th wedding anniversary. Wouldn't it be a nice anniversary present to have a full term, healthy baby sister or brother for Bryce.

I'll be back soon with more details about the coming months. I'm just too exhausted (ohh, pregnancy!) at this late hour of 8:25 p.m.

LISD Transition, EEG, etc.

Yesterday was one long day! We started the day at the Leander ISD transition meeting, which lasted a solid two hours. It went about as expected, unfortunately. I was still holding on to a little bit of hope that they would see Bryce, read his history and realize that he needs summer services regardless of their asinine bureaucratic nonsense. No such luck.

Mostly she said that even if we could qualify him for services what he received would be pretty much worthless anyway. And the only way to qualify him would be to stop all therapy for six months and then assess him to show that he's regressed. WHO IN THEIR RIGHT MIND WOULD DO THAT TO THEIR CHILD IN ORDER TO RECEIVE 2-3 MONTHS OF SERVICES?? It's completely absurd and infuriating.

As it turns out we may have found a way to get him private therapy through Medicaid, which if it works out (fingers crossed) for all therapy disciplines would be an absolute saving grace! It would mean that I can get Bryce all of the therapy that he truly needs for the entire summer without having to have a meltdown at Leander's district offices.

You'd think this would make me not care so much about this ridiculous system to which we dutifully paid taxes to for 7 full years before Bryce was born. Nope. I can't get past how the whole system seems to be set up so that most people don't get the services they need and are entitled to. Unless you make a boatload of money, happen to be a lawyer or both you can pretty much guarantee you're not getting a fair shake.

So that's my rant for today. Sorry guys!

After just enough time for a nap and lunch I took Bryce for his EEG, which ended up being another two hour ordeal. He was so good though. Here are some pictures of him getting his probes attached:




Don't think for a second that I don't count my blessings EVERY SINGLE DAY! I may have to put up with a lot of crap when fighting for Bryce but good gosh, he's {SO} cute & sweet AND he smiles through it all. I don't know what I'd do if he wasn't so easy going!



That doesn't mean that he sat still for the 25 minute test. Here's a fun game to play on a rainy day. Get a two year old, stick a bunch of cords to their head and then see if you can get them to be still for 25 minutes and not pull any of them off. It was a challenge but we got it done!

I kept trying to watch the screen and see if I could see anything:



I saw a lot of things that looked really scary to someone who knows nothing (ME) but finally gave up on trying to make any real sense of it. We don't have any results yet but should this week since they wanted to get them before Bryce's botox on Monday morning. I'll be sure to let you all know as soon as I do.

After the EEG, Poppa picked up Bryce to deliver cookies to some of our North Austin clients. Which gave me a chance to finally stop in and visit a dear preemie mom friend of mine whose sweet little Harper had a hemispherectomy last week. Harper looked amazing - all pink and alert and .... so far seizure free! If you can, please take a second to include their sweet family in your prayers and/or blog reading activities: Twingate.

Thanks, as always, for keeping up with the Molines.