Saturday, September 26, 2009

Boring Assessment Reports (No Cute Pictures)

Bridgette has had 3 of 4 developmental assessments by Kids on the Move.

Assessment #1 qualified her for the program. We discovered her gross mobility is a whopping 1 on a scale of 1-100.

Assessment #2 happened Monday and was more comprehensive. We don't have the full results of that one yet, as the categorical tallies had not been totalled before her physical therapist, Betsy, left our home.

However, Betsy was pretty sure Bri's motor problems stem from a desire to control her mid-line (and not fall) more than any physical pain. One of several telltale actions occurred when she witnessed Bridgette reach for an object with one hand and leave her other arm out in the opposite direction for balance. Most kids reach with both hands, she said, which gets their hands on the floor and naturally flips them onto their knees.

The good news is that without a physical malfunction to correct, Betsy said most kids who have mid-line issues tend to forget about rigidity once they "get it," although getting it may take some time. Also, Bridgette throws a serious fit whenever we force her to move, but she calms down quickly when we take our hands off. Betsy assured us that not all kids in the program are so easy. Some with more mental issues refuse to calm down at all, making continued attempts difficult to impossible.

Despite this, I have to put myself in a lot of time-outs while I'm working with baby. I don't actually yell or throw things and hit or clench my fists and shake like she does, but internally, I'm not really sure which of us gets more frustrated. She simply refuses to bend her knees, and when I make her do it... well hell hath no wrath and all that.

A couple of you are thinking the apple has not dropped far from the tree. (And if you know Jeff, you're thinking it's his family tree, and if you know me, you're thinking it's my family tree.) Please stop thinking this. It's just not nice. But besides that, her trouble really is a bit extreme. We hope as she continues to develop and milestones are reached, both her abilities and emotions will even out some. Then you can guffaw and say she's just like us, quirks and all. Right now, it just feels like you're teasing our special child and our (obviously sensitive) situation.

That said, almost all of you have really shown us a lot of love as we try to do our best with Bridgette's many health concerns. Thanks!

Betsy did notice Bridgette's abdominal slump toward stoma-side, so we will be re-addressing that at a future time. We may even do more x-rays to rule out potentials like scoliosis. If x-rays are scheduled, I'm sure we'll check her knees, hips, and feet too just to be sure there are no other issues such as dislocation or extra bones.

Assessment #3 was done by an occupational therapist, Mark, who did an eating study. Mark said that based on his observations, he'd have qualified Bridgette for Kids on the Move even if she had no mobility issues. Of course, this made me sad... again.

He noted that Bridgette doesn't chew but rather shoves her food from one side of her mouth to the other. Her closed lips were the indicator there, and I suppose that's why he's a professional. I had no idea. It looks like a tight-lipped chewing motion. Most likely that is why she chokes and vomits.

Again, the good news is that this is probably correctable through therapy alone. Since Hirschsprung's kids sometimes have esophageal motility and other related G.I tract problems, I'm pleased we may avoid additional surgery/medication.

Funny note: We have always had trouble prying Bridgette's mouth open (to rescue her with finger sweeps, to dropper her medicine, etc.), and when she opted to chipmunk a piece of ham in her cheek during the study, I was somewhat relieved to see that Mark couldn't open it either, even with all his experiential tricks. She has a tight jaw and resolute determination.

Like her physical therapist, Mark suggested a number of things we should start doing now to help her improve her eating. One general suggestion, "Try to get her to chew," really amused me. When I asked how, he said, "You and your husband should put crunchy things in your mouths and chew with your mouths open to show her how it's done." :) :) :)

Since Bridgette's refusing sippy-cups and still drinking from a bottle (also refusing to hold it herself), he asked us to skip straight through the sippy-cup stage to cups and cups with straws. We have tried both on regular-ish occasions. She'll take sips from a cup if we're holding it, but no luck with straws.

And then today at Chili's, we offered her a straw and she drank like it was second-nature (and I suppose for most kids it is!) I actually teared up. She even held her own cup. If we're lucky and she remembers how, from today on, no more bottles!

Assessment #4 is perhaps a misnomer. Next Wednesday Andrea, our case manager, and Betsy will take an hour with us to create an IFSP (Individual Family Service Plan). It will dictate what we want to accomplish over the next 6 months. Most likely Betsy and Mark will both make bi-monthly visits to teach me and Jeff new tricks of the trade.

The ultimate goal, obviously, is to catch Bridgette up to her age-group. Once she gets caught up, she is dropped from the program. Andrea let me know, though, that once she's qualified she will not be dropped as long as she is displaying even a minor delay in any one area.

Lastly, Bridgette's yeast infection did in fact flare up (worse than ever) as soon as her last two-week round of Diflucan ended. We're starting round three today but are concerned about the underlying cause. We will be consulting her pediatrician at her 15 month well-baby check-up on October 8, and there's a high chance we will be referred either by Kids on the Move or by Dr. Savage to a registered dietitian and a G.I. tract specialist soon.

Congrats on surviving this whole post!
Congrats on skipping to the bottom of this post!


Angela said...

That's a lot of information. I think sometimes the things parents learn to help their child is interesting. My cousin has two Autistic children and she knows all sorts of things to do to help them along with life now. It's makes a hug difference in their everyday life just being able to say a certain phrase at the right moment for them to 'get it'. I pray you learn all sorts of things to help Bridgette 'get it'. She certainly seems to be a smart girl and she's smart enough to not let herself fall on her face. :-) Keep your spirits up, we love you and pray for you.
Oh, I also knew someone who didn't know how to swallow their food and after therapy they got her to eat and swallow. She's healthy happy 4 year old now and eats everything in sight.

Tammy and Alvin said...

I love you, Kel! I'm glad you've got access to such great resources, and I look forward to reading about all the success stories and progress. Bridgette is so blessed to have you and Jeff as her parents to help, love, teach, and support her!

April said...

I think I worked with Betsy and Mark too! GOOD LUCK! I really enjoyed KOTM! You are being really brave to tackle so much! Love you!

Jacqueline Miller said...

Hang in there Kelly and keep your head up. I'm sorry to hear about the difficulties, but also glad that you have so many great resources and so many experts on your side from such an early age. Keep us posted on her progress, and we'll be thinking about you and wishing all of you the best.

Anonymous said...

Aren't you glad you decided to go ahead and call to ask for an assessment? I know I am. So much better to start therapy now than to wait until it would be even harder.

Have they given you any idea as to WHY she might be having all of these issues? If they ever do, I would like to hear what those ideas are.

It is never easy to try to get a child to do something they don't want to do. Do you remember the old adage, "You can lead a horse to water, but you can't make him drink?" As a mother, I added this little bit to the end of that, "the best you can hope for is to help him WANT to drink." I hope you find what it is that will help motivate Bri to WANT to chew, to WANT to move, and so on.

I am very glad that you are starting to see glimmers of progress. The concept of opposition in all things, "having no joy, for they knew no misery," helps one to understand why true joy is felt with the small accomplishments following such worry and concern and effort. You have certainly had your share of worry, concern, and effort. I am glad that there is some joy, too.

Sounds like you are becoming a bit like your old mother, though - I can't help but cry when I see someone achieve some goal. Doesn't matter if the goal is large or small, what matters is the sense of accomplishment that is felt. It always brings tears to my eyes.

Please keep us posted as to other tests run, specialists visited, plans developed, and results obtained.

You are Bri's greatest advocates. I am so glad that she has you to fight for her and to love her.


Chelsea said...

Well, I happen to think that the apple didn't fall far from the tree (keep reading) in that Bri is beautiful and bright and definitely someone I enjoy having in my life. And she's determined and strong and wonderful. I look forward to watching her grow--please let me know if I can help.

As someone with idiopathic scoliosis I can definitively tell you it isn't the worst thing in the world.

Chin up, dearest--we're all rooting for you!!

Chelsea said...

Tell Miss Babs I totally feel for her--I've spent over a month on Diflucan myself and it just leaves you feeling crappy. Have you perhaps tried a ticonizole ointment? Not all yeasts are susceptible to Diflucan and I'd hate for your little one to get her insides nuked for nothing. Of course, this is purely anecdotal--Dr. Savage would know for sure.

Janel said...

so glad you are able to get her into a program. My state cut so much from the budget lately many children with delays are suffering because of it. Hugs hang in there. You know how to contact me if you ever have any questions about this sort of stuff.