Thursday, May 7, 2009

What brownies?

Wednesday was much better than Tuesday. No life altering mistakes anyway! My thumb has healed, I remembered to call my sister on her actual birthday, I remembered where I left the battery charger(in B'ham and Nelda's putting it in the mail asap), my daddy made it home safe and sound and I still have some brownies left!! Score one for me!
Since I can't upload any new pictures I guess I'll post some old ones because what good is a blog about children with out any pictures of them?!James is doing very well these days. While we were at my dad's he started taking a lot more steps and would do it with out me having to remind him to stand up. Once we got home he started doing it more and more and by the end of the first week he was able to stand up for at least a minute without holding on to anything! Then by the middle of the second week he was WALKING every where on his own, without falling down!! I was going to put a video up but decided to wait and let him surprise everyone in New Orleans. And surprise them he did! They were so excited and it was so wonderful to see him keep up with the other kids!! As soon as I get my camera going I'll post a video of him walking. It'll make ya cry for sure!!

Everyone was saying how amazing it is that he's doing this with only one therapy session. But I told them that he hasn't even had a therapy session, just an evaluation(even though I have been doing daily exercises with him!)so this is such a blessing from the Lord that he is walking so wonderfully! Just in my humble opinion as his mama, I think that the CP did not play as big of a role as we had feared in him not walking yet. I think it definitely held him back some because he has had to learn how to balance with a limp since he still cannot put his left foot down. Both the physical therapist and BCW evaluator told us he is functioning on the 14-16 month level so technically he doesn't have any delays at this point. That may confuse some of you, I'll explain: He is 19 months old but his adjusted age since he was 2 months premature is 17 months. And he is a boy and boys tend to be 1-2 months behind on development so if you just look at him as being 16 months he's right on time with walking. Even with all this good progress he is making on his own we're still anxious to get his therapy started. The neuro told us even though it's a mild form of CP he wants us to be as aggressive with it as if it were an extreme form of it. In a direct quote from the doctor "He needs therapy NOW, not later." Even though he has no delays right now, we have no idea what it's gonna be like 6 months or a year from now. If any of you out there have had any experience with insurance you'll be able to relate to our frustrations. Unfortunately our state program doesn't have any PT's or OT's on staff so we have had to go to outside resources for these. I found the only pediatric PT in our immediate area who actually makes home visits even though she does not work for a home health agency. She's wonderful, I love her, the kids love her and I want her to be his PT. But and however she is out of network. She filed for a GAP extension(don't ask, can't explain!) since there is no one else in our coverage area and was hopeful that would do the trick but they are having a problem with letting her treat him in our home since technically she is not home health. She works in the school systems and doesn't have an office to treat patients because she's never had enough patients outside the school to be able to rent office space.

I talked to her on Tuesday and she said now they are saying they don't have enough info on James and his diagnosis but they wont tell her exactly what they need. So when I was in Tallahassee Tuesday I decided to stop by the pediatrician's office and ask for any clinical notes they may have on James. I didn't leave with any records in hand but I left with a promise that they would call our therapist the next day and find out exactly what she needs for the insurance and that they will do what ever they can to help. But she told me not to expect immediate results because fighting with insurance is an uphill battle. Gee thanks for the encouragement sista!
Rewinding a few weeks on the frustrations:Our pediatrician made a referral for him to get OT, PT, and S&L at TMH Pediatric Rehab. I called to make appointments a few days before Easter and was told for him to be evaluated for all 3 on the same day it would be the middle of June before they could work him in. Just for OT would be 3 weeks out and PT would 5. I told her that I couldn't wait that long and she told me I was lucky to get those slots for PT and OT because most 1st appointments are at least 2 months out. Ridiculous. I went ahead and made the two appointments anyway. Thankfully right after that the PT I want called and said she could see him in 2 weeks. Well that was better than 5 so I told her to come on and if insurance wouldn't pay we'd pay outta pocket. I just want my baby evaluated. I called TMH back and canceled the PT. What a nerd. Sometimes you can't see the forest for the trees.

To make a long story longer we are still waiting on referrals for an ear, nose and throat doctor and an orthopedist. I try to be curteous and wait at least a week before I call and start hounding poeple after I've been told refferals will be made and I haven't heard anything. I know how busy and hectic doctor's offices can be and I certainly don't want to get pushed to the back of the pile of papers. So I waited and then I called the pediatricians office to see what was up. I had to talk to the girl who calls everybody "hun" and sounds like she doesn't know which way is up. Of course she didn't know what I was talking about. Arrghh. The next day the good nurse Becky called me back and told me she was sorry for the mix up, they are way backed up on referrals and before the end of the day she'd make them both. Well, that's been a week and a half ago and we still have no ENT or Ortho appointment. Tick, tick, tick..............


~sydney~ said...

Love the title :) We were all so proud of James and his walking last weekend! We're stilling praying everything gets worked out for him to get the proper care but mannio....I'm 15 and confused
I know most know all your Sydjo doesn't ;( maybe aunt beck can explain

~sydney~ said...

I meant I DON'T know

Becky said...

What is she talking about?

Anyway, thanks for the detailed update. Very cute and appropriately placed pictures, too.

Check your email. I sent you a couple of titles. Let me know if those aren't as helpful as I think they will be. I'll keep digging!

Wonder why all people named Becky can't be as efficient as me?

Amanda said...

Oh Sydjo, welcome to the world of children with disabilities.

Dianne said...

See, 'manda, you just tripped my breaker box with all the information you have retained about James' appointments and therapists and doctors. You got it going on, sistuh.

And, the pictures are just precious interspersed amongst all that INFO you have stored.

I just ain't worried about you or your parenting abilities. But, I still pray daily for you and your little family.

amber said...

Oh are speaking my language!! It's a mess, isn't it? I usually give our referral system a good 2 weeks before I start hounding...and by hounding, I mean that I call every couple of days.

And I can vouch for the insurance woes. Our insurance won't cover OT at all, and Nate has needed OT since he was itty-bitty. Thankfully, the Lord touched the hearts of our therapists and they have given him OT (and me training) when he has needed it most. And now with is diagnosis, the state has picked him up for OT services finally! So I get ya...fully!

It's a mad house! Seriously. And they should really learn to never underestimate a mother's will to get her child the help he truly needs.

Can't wait to see you next month!

su said...

So ya'll have noticed too that suddenly we live in an abbreviated world...I'm thinking it's cause of all the emailin and textin...pic for picture Mag for Magazine st, Tchoup for "Tchoupotoulas St. btw for by the way lol for lots of love or laughing out loud (haven't "figged" that out yet) (: for smilie faces, goes on and on, and so ot pt sro,yem, whatever, you just have to try and fig it out!!(i think I just made one up!!!