Developmental delays/cerebral palsy

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Developmental delays/cerebral palsy

Postby dixiechicken » Wed Mar 19, 2008 8:13 pm

Does anyone have a child with delays or cerebral palsy? Wade had a very challenging delivery--emergency C-section, wasn't breathing, apgar 0/3/3, transferred to Cooks Hospital, cooling blanket for 72 hous, NICU for 16 days. His first MRI--4 days old--showed brain damage with high risk of CP. He was on phenobarbital for 7 months, and MRI around that same time showed 70% improvement from original MRI. Wade received physical therapy 3 times a month, and just this week got referred for occupational therapy.

Wade is such a HAPPY baby!! However, now that it is more apparent that he's not reaching certain milestones, I'm very sad. I can tell he wants to do SO much, he just can't. He doesn't sit up on his own yet, so needless to say, he's not crawling. He can roll from stomach to back but not vice versa. My main question I guess is how do you deal with it? How do you not compare your child to every child you come across? I teach special ed, so I'm very aware of the challenges and different problems. But it's so different since he's mine! I've really tried to stay strong, but no one seems to understand. He looks so "normal", that outsiders don't know the emotions I feel on a daily basis. DH is even on a different page. He has so much faith. I do too, but I don't think he realizes how hard it is sometimes to just go to Wal-Mart. Wade's in a big car seat now, so no car seat carrier. Then, he can't sit up in the shopping cart. He's too heavy to carry, and sometimes putting on the wrap/carrier just seems like a chore when all I want to do is run in really quick!

I'm just looking for some words of wisdom to get me through this time when so many babies his age are starting to crawl and even walk. Thanks for letting me vent a little.
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby annofm1 » Mon Mar 24, 2008 4:45 am

I have been meaning to respond to you, but my hands have been full for the past few days. I want to let you know that you are not alone. We actually have a similar situation. I cannot talk now, baby in need, but I should be able to later today.

If you want, take a look at our blog. It has really helped to "manage" my feelings. It's in my siggy.
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Mon Mar 24, 2008 7:44 pm

Ann--Thank you for responding!! I've read some of your posts and have tried to keep up with Eliah's progress. I just took a look at your blog though and saw the mention of CP. I wasn't aware of that. Like you don't have enough on your plate!! I LOVED the last 2 lines of your January 18 blog--"Overall, things are well. It's just our version of normal." I just really need to keep that in mind.

Your kids are beautiful! Eliah has a wonderful smile. He looks so happy! I saw in your siggy that you have hypothyroidism. Another thing in common!
:wink: I was diagnosed with that in November. My levels were 125, got down to 27 in January, now at 6 and just increased meds again to get it a little lower! That was just something else to deal with in the midst of all of this! I was miserable! :cry:

I think I might look into a blog page myself. Might help get some bottled up emotions out. I had a really hard time bonding with Wade in the beginning too. (I sometimes still do!!) Except for right before they medivac'd him to Cooks, I didn't see him for 3 days and didn't get to hold him for 4.

Anyway, I have to run hang up some diapers. Thanks again for responding. I would never wish this experience on anyone, but it's nice to know someone understands.--Jenny
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby Baby4Staci » Mon Mar 24, 2008 8:54 pm

I cannot relate so i dont have any advice. I can say that you will probably always compare your DS to other children..

Just remember though that even though his body wont work the same his mind is right on track. He is just as smart as all the other babies his age and will always be just as smart.

He is so adorable!!
Mason Anthony born 1/9/07
Savannah Ray born 5/9/09
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Postby annofm1 » Tue Mar 25, 2008 6:11 am

Dixie, I'm glad that you found something useful in my blog rantings. I have never really journaled before, but it really seems to help. Most of the time, I get so caught up in the surreal moments that I don't remember the details. If I blog, I can go back and see what happened and when.

I know both our sons got here by different means, but I think they are in the same boat overall. Eliah is still in a carrier car seat thankfully. We knew he would be a big baby, so we got the one that goes up to 30lbs. In your case, I would do what my MIL suggests for trips to Walmart. Carry DS and push the basket until you get to the pillows and towels dept. Make a little bed in the basket while you shop. When you get to the checkout tell them you don't want to buy the towels and pillows (or you could just bring your own). I know it sounds really bold to do that. But you would be surprised how little the employees care. And I believe you can come up with creative ways to do the daily tasks. Just because we cannot do things exactly like everyone else doesn't mean they can't be done. . Just keep telling yourself, "It's no big deal", even if it is.

And I definitely hear you on the comparing your son to other babies. I think it's natural. And it is hard since they look "normal". I always think people are giving me looks because my 10 month old, 23lb baby cannot hold his head up very well. They may not even think twice, but I feel so conspicuous. And I feel like I have to explain. I wonder if I will change my way of thinking. I hope so.

The other day I was at the grocery store picking up dinner, and I had Eliah in the car seat and frame (easy to push). And I have to keep Eliah moving back and forth or he will cry. The cashier was like, "Do you have to keep him moving all the time?". I said yes. Then she asked why. I felt like I had to explain that he was not normal by saying, "He has brain damage". And as soon as I said it, I regretted opening my mouth. She gave me the pity look. Ugh. I don't want pity.

At least my friends are good about objectively seeing Eliah's improvements. I never get the pity look from them. My MIL gets discouraged with his advancement (she watches Eliah's cousin who is 3 mos younger and surpassing him) and gives Eliah the pity looks and shakes her head at me like I'm helpless.

Yes it's hard. Every day is a challenge. Life would be a lot easier with a perfect baby. But that's not the ways things worked out. We are the mothers of these wonderful boys because that's the way it was meant to be. People always say how strong I must be to handle all of this. I'm not, but I don't have a choice. I just have to do what is necessary. And it may never get easier. In fact, it may MORE difficult as our children get older. But we will find ways to cope. And we will get used to our responsibility.

You're doing a great job. And I am always here to lend an ear. I am a great person to vent on.
Ann- Hypothyroid & Endometriosis Me- 37, DH-38
DD- 5, DS- Born 5/28/07 w/ Hemophilia (stroke @ birth & 5months with severe brain damage)
Angel @ 34wks 9/25/98
Angel @ 9wks 5days 7/14/06
http://eliahjames.blogspot.com/
http://sensoryintegrations.com/

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Postby dixiechicken » Thu Mar 27, 2008 8:19 pm

Thanks so much for taking the time to respond again. What a great idea with the grocery cart at Wal-Mart. Guess I'll just have to learn to think more outside the box! The thing is, I teach a self-contained special education class, so I'm used to thinking outside the box. However, it's a little different now that it's my own child!!

And I definitely hear you on the comparing your son to other babies. I think it's natural. And it is hard since they look "normal". I always think people are giving me looks because my 10 month old, 23lb baby cannot hold his head up very well. They may not even think twice, but I feel so conspicuous. And I feel like I have to explain. I wonder if I will change my way of thinking. I hope so.


This is EXACTLY how I feel! I know people aren't watching and judging what Wade is/isn't doing, but when I pass other people with babies, I feel like they're wondering why my baby who is a lot bigger isn't acting like their baby. I have taught my babysitter's daughter for the past 4 years, and she has Down's Syndrome, so she too knows what it's like to be "different". I told her a few weeks ago that I don't know what to say when people ask me if Wade is starting to crawl, walk, etc without sounding defeated or negative. She told me to just matter of factly tell them that his physical therapist is working with him on that. :wink: She said that will shut them up! 8O

I too don't want the pity, but I still feel this great need to explain it to people. But then I don't really want to get into the details, because I don't want them to think that I'm looking for sympathy. :dunno: Thank God we have a very strong network of friends on our street. However, before it was really obvious that Wade was falling behind on his milestones, they would all tell me how perfect he was and how nothing was wrong with him. But my mommy instincts knew things weren't what they should be. I just want people to acknowledge that there is something wrong and celebrate our small victories instead of acting like everything's going to be just fine. Does that make any sense at all????

There is a reason that DH and I have been given such a special child. In fact, I've already seen things in my life changing because of the experiences we have gone through in only 10 short months. It's so amazing how someone so tiny can already have such a huge impact.

I know in the big scheme of things, everything is going to be fine. It's just going to take some getting used to. I had such a perfect pregnancy that something like this never entered my mind. I'm a big control freak, and I can deal with anything as long as I know what I'm dealing with. So needless to say, this has turned my life upside down! 8O I can't control ANY of this, and I DON'T know what I'm dealing with, because things seem to change almost daily. There's always a doctor's appt. coming up or a therapy session or a new medical bill in the mail. This is now my life, and I have to get used to it.

Thanks again for listening.
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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