Monday, June 12, 2006

CP and PT

TPN, PDA, ROP, BPD, IVH, MRI, CP, OT, PT, CIA, KGB...okay maybe not the last two, but we have dealt with a LOT of acronymns over the past two years, the most looming and scarey of which is CP, aka Cerebral Palsy.

In a nut shell, CP is damage to the part of the brain that controls motor function. It can range from very mild, to very severe. In mild forms, it may not even be noticeable, and may never be diagnosed. In severe forms it can affect a person's entire body to the point that they are not able to walk, sit, talk, eat, or move at all.

Initally we were optimistic that Eden's CP would be mild. The MRI of her brain showed very little damage. Unfortunately, the CP is more involved than we initially hoped. However, in this post, I don't want to focus on the things that Eden can't do, but rather what she CAN. We are very proud of how far she has come. Eden is able to hold her own bottle. She can pick up food from her tray and feed herself. She can drink from a straw, and is working on the sippy cup. Eden has perfected her ability to roll clear across a room to get what she wants. And she is FAST. With great persistence and determination she can do a bit of a military crawl/scoot. The crawling is still a slow, inch by inch process, but she works hard at it and I have great faith that in time she will do that well also. Eden has an incredible attitude and is amazingly motivated for her age. She will invent her own games and spend hours practicing them. She loves puzzles, shape sorters, cups, spoons, crayons, and books. Her favorite activities involve putting things in and taking things out of any type of container. She is also quite fascinated by books with flaps or doors or slidey things that she can move.

Eden has been getting PT (physical therapy) for just about one year now. She has a therapist from our school district, and a private therapist who have each been coming once a week. She has also been getting speech at U of M's cochlear implant center once a week, and services from the Redford Union hearing impaired program once a week (a speech and language therapist, teacher consultant, and audiologist, rotate visits). Now that summer is here, our schedule will be changing a bit.

Eden's private speech therapist, who has quite a bit of experience with children with CP, has said that Eden's biggest obstacle in learning to talk, is going to be the CP rather than the hearing loss. Eden has really low tone in her trunk and neck, making it difficult (impossible?) for her to sit up well. This impacts her trunk control and breath support, which will potentially make it difficult for her to speak in sentences.

Our insurance will cover 90 PT/OT/Speech visits a year. This equals about 2 visits a week with a few vacations. Since school PT is ending for the summer, and we want as much PT as we can get, we are discontinuing private speech in favor of 2 private PT visits a week for the summer. We're also looking into a private OT evaluation to determine if that is something we should pursue.

In terms of adaptive equipment, let me first talk about the stander. Babies are born with shallow hip sockets. As they begin to pull to stand, and spend more and more time on their feet, their legs become more stable and push deeper into the socket. Babies with CP, who are unable to stand, are at significant risk for dislocated hips, and various other problems, because their legs do not properly position in the hips. Eden got her new orthotics (leg braces) featured in the picture above a few weeks ago. She wears them when she is working in her stander (the one with the big wheels). My goal this summer will be to get Eden in the stander for a little bit EVERY DAY. I try to get her in there as much as possible now, but with work and everyday baby care, it is difficult to find time. I am in a constant state of guilt and depression because I feel like I am not doing enough.

Other adaptive equipment that we have found indispensable include the feeder seat featured prominently in this post, and the Creepster Crawler, which you can see here. Thankfully we have excellent therapists who are always bringing new equipment to the house for us to try with Eden. Most of what we have is on loan to us from them. This equipment makes it possible for Eden to participate in some activities with her sister that she wouldn't be able to do otherwise. Without it she would just be a little rolling bean lying on the floor:) I also like The First Years Reclining Booster. It has three positions, and can be reclined for kids who don't sit up well. We take this one with us to parties or events away from home where Eden will need somewhere to sit. She's hard to hold all of the time, especially when she is excited and is trying to jump out of our arms.

We will be seeing a physical medicine doctor this summer with both girls. With Eden he will be checking out her muscles and bones to make sure that she is developing properly. Our biggest worry right now is that her legs, particulary her left one, tend to knock at the knees. The way her hips rotate in make it even more difficult for her to sit, because she cannot get a wide enough base. Eden will potentially need Botox injections to relax the muscles in her legs that cause the tightness and inward rotation. She is probably too little now, but this will be something we might need in the future. The physical medicine doctor will monitor that.

Holland will also be seeing the PM doctor. There is a slight worry in the back of our minds that she may have CP also. Obviously it would be MUCH milder. The worry is there because Holland has generally low tone, especially noticeable to me in her shoulders, hips, and knees. This is holding up her walking (yes, she is 22 months old and still not walking), and has caused all of her gross motor milestones to be delayed. The left side of Holland's body has also lagged behind in development. I don't really know if the diagnosis is NECESSARY, given that Holland WILL eventually learn to walk and won't have obvious signs of CP. The only way I would want the diagnosis is if she would be eligible to receive intervention services that she wouldn't otherwise (like maybe be able to attend the same preschool as her sister...for free?).

Now, just to put it out there... I don't forsee that Eden is ever going to be able to walk independently. Perhaps you think that I am being pessimistic and worrying too much about things far into the future. Well, I suppose you are right. I have learned to be pessimistic, and I worry way too much. About everything. If you think it, I've probably worried about it. I may even be worrying about it right now.


Kacy Jean said...

Billie - your girls are amazing, your love and strength for them is beyond amazing. I think it is so brave of you to write your feelings so vividly- I read many comments daily how reading your posts have helped other parents maybe in the same situation as you- I hate the fact that the girls struggle to walk; but I know I speak for everyone when I say that they each have walked into each of our hearts forever.

rabi said...

that girl of yours is just incredible. and she does look super cute in her orthotics! thank you for sharing her adventures with us.

Anonymous said...

I can't even fathom how difficult this must be for you, this everyday struggle with both of the girl's disability and your own human shortcomings...but I want to assure you that you are doing a FANTASTIC JOB. You are doing every possible thing to give your daughters a full, enriching, loving life. Just look at them! They may not be able to do things that other babies their age can, but they sparkle and shine like very few children I've seen. You are a superhero to them! It's like the old saying goes, "God doesn't give us anything we can't handle." I know you've probably heard that a billion times by now, but it's so true. You are doing beautifully, no matter how crappy you may feel at times. I can see the love you have for your babies every time I look at their faces. These girls are lucky to have a mom who is so strong and so smart. :)

Mete said...

You ARE doing enough - more than enough. I only wish I had access to some of that equipment when Ethan was younger. The doctors he saw until he was 2 (rhymes with SHRINERS) gave him very little equipment. Specifically, I'm angry they never even mentioned a stander. Looking back, I believe he wouldn't have needed his hip surgery so early if he had access to one sooner. I didn't even know they existed until the surgery was inevitable.

You're all doing a great job. I can see why you want Holland to get a diagnosis, if possible. Just having those two words on her record open so many other doors for medical approval.

I can see why you can feel "pessimistic" (I'd say, "realistic" with all the uncertainty). But I wouldn't rule anything out with those girls yet. If nothing else, I believe they will both be independently mobile someday, one way or another. That will be a major step for them, whether on feet or on wheels.

Anonymous said...

I can imagine every parent worries and contemplates what challenges and disappointments await their children in the future. You have the added worry of Eden's disability. However, you are so happy and upbeat around her, and I think that is reflected in her personality. I'm sure each day brings new worries and painful thoughts, but I know you celebrate each accomplishment and milestone that she achieves. We must all keep the faith that she (with your great help and encouragement) reaches every attainable goal and that she leads a very happy life. Both girls are so loved I think this is sure to be the case. Keep your chin up and remeber to take some time just for you to relax and de-stress. P.S. congrats to John on those Walleye!! Luv Ya Liz

Kendra Lynn said...

Dear Billie:
You have beautiful daughters, who, dispite their difficulties, are happy and growing stronger every day. :)
I pray that you will be able to let go of some of those worries, and that depression will be a thing of the past.

Lots of love and prayers,

Anonymous said...

Hi- My 25 weeker is 18 months actual and also wears orthotics- we picked the hearts but the sheep were a consideration!

Anyway, she is estimated to be out of them in about 6m (one year total) due to left side weakness like Holland. They made a TREMENDOUS difference in her balance, posture, and tone. My kid runs around like a maniac now and you would never know...

What I am getting at is that she doesn't have a CP diagnosis, but we did the orthotics anyways. You may want to look into that for Holly, and use holding balls while standing to stabilize and for balance.

Also, I have my kid in 3x PT, 2x OT and one speech. Regional center here in LA pays due to dx of extreme prematurity. It was a fight, but given your (and my) career background, maybe you can angle for more? When I was at a standstill with them, I saw a top developmental pediatrician and begged her to put things in the report (therapy recs) that regional center would be forced to comply with. It cost $600 because she didn't take insurance, but now I am saving thousands I wouldn't be able to pay for in free therapy services.

Maybe its in my head, maybe not, but I think that more helps. I also hired students in the fields of tx I think she needs to come to the house for 15 an hour. They get practice, my kid gets help (but no pt touching, that freaks me out- just the others). Maybe you could find some people like that to help out when you are tired/overwhelmed (I've been there a lot and only have one kid!). At least you know they are being entertained and maybe learning something while you lie down!

I hope I didn't offend you with these ideas- they just helped me a lot. No matter what you are doing amazing. PS- Eden is amazing. Look what she has done so far! -E

Anonymous said...

Hi Everyone!
Billie the girls are getting so big! It's amazing what they have accomplished so far in this short 2 years. While Eden may have disabilities, it is so evident that she is a happy and content baby due to the fact that she has 2 wonderful parents who do whatever they have to do in her best interest!
Miss Holly is looking ready to walk...I think she's holding out on ya!!
Do you have any spare hula hoops, it looks like she's having fun!
Love and big smooches to you all,
Mamma Jules

M said...

Given how early they were, I think the girls have come a long way and are doing great. Of course as a mother it's your job to worry about everything, that's to be expected. Remember you're not superwoman (no one is, that was fiction, remember?) and you can't possibly do it all. Try to cut yourself a little slack every now and then. I think you're doing a great job.

Shannon said...

Billie....huge hugs going out to you. I think you are an amazing mama and beautiful woman with a humongous heart. Your girls are absolutely precious and how far they have gotten at this point is a true testament to the support and love that you and your husband give both of them. Both of your girls are such happy and interactive children (at least they seem so in the photos!!) that they will both go far and do amazing things in their lives. I look at Darsie everday and think the same thing. They may have these "disabilities" and need some extra help, but just because they aren't physically perfect doesn't mean that they are just as good (if not better!!!) that those "normal" people. Good luck!!!

Anonymous said...

Wow, you are busy, with so much information to absorb, so many therapies and equipment to work with. It sounds like the girls are receiving every possible EI service to help them reach their full potential. To see the girls active and growing and achieving so much, and smiling their lovely smiles, is amazing, and inspiring.

I can understand your concerns and anxiety, and I know how hard it is to wait and see whether some developmental delays will be overcome, with therapeutic help.

But we know your girls are both fighters, and survivors, and I suspect they will amaze their doctors and therapists, and their parents too. To me they seem so young still, with so much potential for development and growth.

Our kids showed the greatest delays from age 12 to 18 months, and did the most catching-up between ages 2 and 3 years old, in gross motor and speech areas. So it might be that your girls are just about to blossom, and really achieve a lot of milestones in the next year.

I will keep them in my prayers, and wish all of you a delightful summer,

Allison said...

Those girls get cuter in every picture. It sounds like you are all over things and that your head and heart are so in the right place. I can completely understand why your mind is worrying all the time because you just want the best for your kids! You are amazing but remember that you are the girls mother first and fantastic at it, but you can't make it all perfect all of the time!

liz.mccarthy said...

Oh Billie...I'm at a loss for words, thank you so much for taking the time to post an update about Eden and Holland....I SOOOO hope I can meet you all when you are here in Northern California....I love your new bio pic by the way!

Anonymous said...

Eden is one of the happiest little girls I have ever met. She is a joy and I pray for her (and her sister), and will continue to do so.

I know it is hard not to be discouraged, but the medical advances that are being made today are amazing and I am confident that Eden will walk one day thanks to those wonderful advances. Stay strong and know that many of us are out here faithfully reading about both girls and their wonderful progress, and are encouraged by it.

Steven Bee

Kim said...

You are an amazing mom, Billie. As evidenced by your love and devotion to both your girls and you unwillingness to let the extreme worry cloud your view of their strengths. They are both beautiful little people with what looks to be amazing personalities! Such cuties! And go Eden! Sounds like she can do a lot of great things!

Anonymous said...

Beautiful babies. I hope and pray your little Eden will walk someday. Even if she does not she will do many other things in her life. It is too early to tell what she will do. Maybe someday she will go to college. Maybe someday she will speak to others about her amazing story.