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Old 10-07-2010, 11:50 AM   #1
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Baby with cp: Encouragement needed

My little girl who is now 10 months old has recently been confirmed with CP. The injury she suffered at birth was pvl which I am told usually results in spastic diplegia. Its been a difficult year so far. Near death experiences for both me and her, living in a country where I don't speak the language very well and knowing that a cp diagnosis may "hit" us somewhere along the line.

She is very bright and cognitively normal, but she also has epilepsy and is clearly developmentaly delayed. Her little legs tend to go quite stiff, while the arms while weak seem less affected.

I am so scared. I read about all the surgeries people with spastic diplegia have to correct leg issues, I worry about if she will ever walk. Nobody , nobody in the medical field we have seen so far has been willing to give us any hope. All they keep saying is that we have to wait it out.

She isn't sitting yet. She is so gorgeous, she doesn't miss a beat. She smiles and even imitates sounds. I worry that once she realises that she is "different" that she might stop smiling.
Is there any hope that life would be happy again for us? Please help.

 
Old 10-07-2010, 01:21 PM   #2
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Re: Baby with cp: Encouragement needed

Hello, and welcome to the HealthBoards. We are here for the very reason of offering support and encouragement to each other. As a mother, I can feel your pain. As an older mother, I hope I can offer you some comfort.

As a parent who spent many years as an elementary school volunteer, I do understand what special children do to their parents, their teachers, their classmates and their caretakers...they teach us all what unconditional love is all about. The strength you will need along the way will come from inside just when you really need it. You become an extraordinary woman.

I can understand how overwhelming this whole picture is to you. Instead of dwelling on everything, just focus on what you are doing right now, the rest will take care of itself. Stay in the minute and absorb every good thing that you encounter, especially when you are in your sweet baby's company. Keep yourself positive, and everything will follow.

I also encourage you to remember that you are not alone. That in itself can be a huge comfort. There is always someone here to listen, understand and respond to you...even if it takes a few days or tries. We want to keep you from being isolated, which it sounds like you are experiencing already.

You get to make the choice if you are to live a happy life. It is a choice that you have to remind yourself of at every step of the way, but it makes things so nice to always choose to be happy.

I am a 49 year old mother of two beautiful sons. I have to many illnesses to list, but the bottom line is that I learned all the things listed above while I struggled back from 4 strokes. Like you, my life completely changed in one moment and I was left to figure out what to do. Quite similar to you, right? I know I had my two sons to live for, I want to be a grandmother and see my boys get married, in the other order. My youngest is a junior in highs school, and I have been very ill since he was 8. I have still parented him, and he always helped me to think straight...He is in the best years of his life, and I am there with him. I am happy, happier than ever because I still have days with him, my parents are still alive, I have great friends.

Sorry for yapping so long, it is just something I am passionate about after seeing what a positive attitude can do. And your darling daughter will always be there to remind you why you do the best you can.

I hope to hear more about your daughter, being in Germany and the reast...Janet

 
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Old 10-07-2010, 02:45 PM   #3
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Re: Baby with cp: Encouragement needed

Hi,
My son had brain damage prior to birth, he has PVL, cysts and a cavity. He has spastic diaplegia, Today he is 2yrs 10mths old, he has just (in the last 4 weeks) sat unaided, althugh it is not easy for him, he wobbles and falls over ALOT. He smiled late (12 weeks) but has not stopped since.
He was diagnosed with Spastic diaplegia at 16mths old.

My son is wonderful, funny, happy, and a delight to have in my life - I am blessed so much by him. He is begining to realise he is different, but its my job to help him understand and enable him to become independant, whether he is in a wheelchair or on crutches. The professionals tell us that he will never walk unaided.

I think the most important thing I have learnt is this, my son is disabled and always will be, but that far from means there is no hope. He will do things differently, but he will do them, he will achieve and he will have dreams and will achieve them his way. Its taken me most of my sons life to come to this realisation. I found the first year the hardest, like you we both nearly died, but we're here and we're on this journey.

You are not alone, you have been given her because you are the best person to raise her. You will be able to give her all she needs. Take courage, and please ask me any questions about my boy, his CP will be different but I am sure that there will be similarities. Keep loving her and she will never loose her smile. Don't loose heart, in a year you'll look back on the changes in her and be amazed! I know I have been.

 
Old 10-08-2010, 01:54 PM   #4
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Re: Baby with cp: Encouragement needed

Thank you for reaching out to me. I don't feel like I am the "right" person at all to have been given this child with all the mountain we still have to climb. What you have said is true about unconditional love. I now really have to learn it! Thanks for helping.

 
Old 10-08-2010, 06:24 PM   #5
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Re: Baby with cp: Encouragement needed

Hi there, you know I think every mother on earth that has found their child has some disorder or another knows exactly how you're feeling right now. We feel so overwhelmed, we drive ourselves crazy trying to think what the future holds and we have that 'why them/me' frame of mind.

For me the best thing that happened in the beginning was my husband telling me, 'it's a life sentence, not a death sentence' and also reading the short story 'Welcome to Holland' (I highly recommend you read that you can find it online easilly, just type it into the search engine).

My little girl is 4 and a half now and I have come so far since getting her diagnosis (spastic quadraplegia CP), I really have grown as a person, I have a new found understanding of kids with disabilities and their parents. I have met the most amazing people, I have cried (both with sadness and with pride) and I have laughed (daily). I have learnt to appreciate each and every little accomplishment my daughter makes, things that most people take for granted. I know I did with my first 4 children.

My daughter is perfect with her congnition, her speech is also very good and she has the most wicked sense of humour. She has a GMFCS level of 4 (second highest) which means she'll probably never walk independently. But you know she's gone from not being able to crawl to bunny hopping around the house, from not being able to hold her own weight standing to pushing a standing ladder around for short distances (this is the most recent accomplishment), she has a Hart Walker which she couldn't move in to now attempting her own form of running and now we are about to trial another walker (Rifton Pacer) which will be much easier it get her in and out of.

She is like any other little girl, she'll talk our ears off, she loves Dora, she loves to draw and play with playdough, she like to dress up and have her hair looking nice and she loves to play dolly's and tea parties.

I feel blessed to have been given Aleacia, I have such a new look on life. Yes I still get sad, but I know if I just take one day at a time it makes it so much easier to deal with. And as one of my OT's told me, don't treat her like she's different, she doesn't know she's disabled, she's never walked/crawled so she doesn't know what she's missing. Now she older and is about to start kinder I do tell her (and the other kids that are curious) Leacie's muscles don't work properly that's why she needs a wheelchair to get around. Kids are so accepting when they're young.

As for medical procedures, she's had two MRI's under a general anaesthetic and while she was under they also did numerous blood tests and lumbar punctures. She has had 2 lots of botox in her hands/thumbs and legs. She has had an adductor release to stop her scizzoring (the tendons in her groin that pull her legs together). She may face a hip osteotomy when she's older, but we'll cross that bridge when we come to it.

I hope you get all the support you need and all the therapy that can help. I know in Australia we have a pretty good early intervention system.

Any time you need to vent or share your ups and down we're here to be a shoulder.

 
Old 10-08-2010, 06:27 PM   #6
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Re: Baby with cp: Encouragement needed

My son Noah is 7 and has spastic diplegia. He is so confident and happy and creative. He really knows who he is, and I think that part of that comes from all the attention he got from doing therapy with PT's and doing home therapy when he was younger. Everything he learned took lots of time and attention and encouragement.
His brother, who is typical, appears to be much less sure of who he is at times, even though we've tried to be very supportive of him and his needs, too.
So there are hidden gems inside every struggle that will appear unexpectedly along the way. It's not easy sometimes, but it certainly deepens your experience of life.
Best wishes to you and your family as you begin this new journey together.
nwmom

 
Old 10-09-2010, 05:43 AM   #7
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Re: Baby with cp: Encouragement needed

Your sounding overwhelmed. It can get that way. When you look at what feels like an impossible mountain for you to climb, I'd like to give you a piece of advice. Go and do something just for you. Have a long relaxing bath, go for a wak and think about a soap on TV. Just seperate yourself from all thats going on. Then you'll find the strength to carry on.
Take heart from our CP mummy stories. You'll laugh and cry, somethimes both within 10 minutes. But every step and ever bit of progress is a major achievement, take heart it will get better, mountains will become smaller and joy will overwhelm you. Keep going x x

 
Old 10-10-2010, 02:13 AM   #8
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Re: Baby with cp: Encouragement needed

I think so far the hardest has been accepting something that isn't defined yet. She is only 8 months now and nobody can tell me where we are going to end in terms of what she will be able to achieve in terms of motor function.
Also knowing that one day I won't be there or be able to care for her like I am now.
I only have one other child and I don't feel its fair to saddle him up with caring for her. My sadness is also linked to the fact that I have been advised by doctors not to have another baby again. So this is it for me.

The strange thing is that when we are alone with her, we are so happy. Its only when we go and see the doctors and they give us these diagnoses with grave faces that my world caves in.
Your little girls sounds wonderful. God bless you too for being such a wonderful mother.

 
Old 10-13-2010, 06:17 PM   #9
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Re: Baby with cp: Encouragement needed

I am going through the same thing! Physical therapy is a must!!! I have a 15mo old girl whom i put in therapy 4 days a week at 3 months. My dr induced me, gave me cervidal, and sent me home without an option to have a c-section! My placenta ruptured a few days later and my dr never even showed nor answered for the hospital she was connected to. If we did't work Janna out everyday, and I mean everyday!, she would be stiff as a rock. Massages also works great on connecting nerve receptors. Keep in mind the more u push her and teach her and stretching is most important than she may just be fine. Janna isnt on any meds and braces arent even necessary the dr said. So there is hope! I even put holy water on Janna daily.

Last edited by shannon48183; 10-13-2010 at 06:17 PM.

 
Old 10-13-2010, 06:24 PM   #10
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Re: Baby with cp: Encouragement needed

I also have a 14 year old son and yours you may have to just explain that thier sister is special and all the help you could get is just a better chance of her getting better. My son is at that age he barely bonds with her but I know when she is around other babies she watches their everymove!! Social gatherings through early on help alot! Are u familiar with all of your rights and services you are entitled to???

 
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