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.

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!

Developmental Assesment Results

Bryce and I had a long (as in 2 entire hours) visit with Dr. Fasci and another doctor (name?) yesterday morning. It was a full blown assessment this time and completed exhausted the poor guy but I'm glad to have the information.

She had a tool kit of toys for testing different skills: crayons for coloring on paper (nope), puzzles for putting pieces back in (lacks the fine motor skills of a real pincer grasp and quite simply doesn't care), cups for stacking (nuha), cups for putting into each other (no), like and dislike objects for matching (almost tricked us on that one, but no). That's just a samplings of what we call the, "Not Yet" category.

On the other side, in the "Heck Yes" category, Bryce did put a simple square piece into a square hole in a puzzle-like board, he takes things out and puts them back in, he knows where several body parts are, where the door and the chair were (and therefore what they are), how to "hide" (hilarious!), clap and turn the pages of a book.

Overall, Dr. Fasci ascertained that Bryce's receptive language (what he understands) is excellent - about 18 months - while his expressive language is severely delayed (obviously) - about 8-10 months. Bryce's motor skills, major body movements, test on a 10-12 month level while his fine motor skills, i.e. pincer grasp, zippers, buttons, etc, test on an 8 -10 month level. The good news is that most of Bryce's skills are close to the same level which means that he's progressing in the same way any child does, just more slowly.

Of course, we're concerned about how far ahead his receptive language is because the last thing we want is for him to get really frustrated and quit trying to speak and sign. We're just planning to continue with the twice weekly speech therapy and keep giving him lots of different opportunities and means of communicating what he wants and needs.

Our other main concern is Bryce's fine motor skills, which Dr. Fasci wants us to work on with weekly Occupational Therapy. Apparently she either assumes our insurance covers unlimited therapy visits, that we have nothing else to do or both. But seriously, as much as I want to do everything for Bryce and make sure he has all of the opportunity he needs to "catch up" - there is simply only so much we can do.

And even though, after much torment and guilt, I eventually always come back to this conclusion it just doesn't sit well with me. So we'll forge ahead, trying to find more ways to make what we have and what we can offer Bryce enough.

Oh, and one last bit of news. It's probably nothing (I sure hope it's nothing!) but Bryce has been "zoning out" sometimes once a day, sometimes more but most days of the week. Dr. Fasci saw him do it during the assesment yesterday and said that we need to talk to his neurologist about it. Apparently this could be seizure activity or early signs of seizure activity and if it is knowing sooner would be better than later. I'm just going to need to believe it isn't right now, while going through the necessary steps to have it checked out, because I just can't emotionally deal with a thing like that until I absolutely have to... keep us in your thoughts. And thanks for stopping by!

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.