I am still in shock at this point. My husband and I adopted a baby girl who was 10 week early. She was born at 30 weeks and weighed 2 lbs 11 oz. At the time she was born, she needed a ventilator for a very short period of time and was in the NCIU for about 9 weeks. Every since I can remember, the DR. said that she has a tightness in her left hip. As of yesterday, the tightness in her left hip has now been clinically diagnosed at CP (Cerebral Palsy). We are meeting with a neurologist on Monday and I was just wondering if there is anyone else out there that could offer some support. I am really having a hard time with this! :-(
I met with a Ped Nurologist and she said that at this point our daughter does NOT have CP. :-) I thank everyone who wrote in and was there for the support! I have found a new source of support here on Momasource! :-) THANK YOU and God Bless you all!
I have a very close friend with mild CP, we've been close for 18 years and she's in her mid thirties, married with two children. Her's mostly affects her balance and some of her fine motor control although she does walk with a pronounced limp and has issues with her hips (especially when pregnant). She might be able to give you a longer list of issues but it really doesn't come up in conversation.
Point being - She's fine.
You have entered a world of wonderful people and exciting challenges, with some heartaches thrown in - that part you're already beginning to experience. My 20 yr old granddaughter is here with me for a couple of days recovering from having her wisdom teeth pulled. She was the same size and gestational age as your daughter. They gave us lots of their ideas about what she would & wouldn't be able to do in life, and almost none of them were accurate. They'll make some educated guesses. The best advice I got from a dad of a severely disabled grown child was "forget the numbers, forget the comparisons". Every kid is unique and precious. They all need unconditional love and someone to advocate for them. We got many services for Alicia at Children's Hospital. The neurologist everyone is grateful to is Michael Nigro, DO. He has several offices and is not a warm/fuzzy guy but will tell you the truth. Dr. Chinarian at Children's was the one who followed Alicia and prescribed braces, PT (theirs is wonderful there) and other stuff she needed. Super-great guy who loves kids! The rehab staff at CHM is fantastic and you'll meet lots of great folks and see some kids worse off than yours, which will help you in a weird way.
Alicia doesn't walk but she's in community college and working part-time, though she has some learning disabilities. She's a spunky, cute gal. She has a boyfriend who's also in a wheelchair and they text & talk a lot.
Please open your heart to the good stuff ahead and don't worry too much about the negatives. The one good thing about CP is that it's not going to get any worse than it is right now or threaten her life, not on its own anyway. It's kind of like having had a stroke. With rehab, improvements can be made but there'll be a ceiling on that which you can't find out yet. Usually kids with CP are very happy and aren't in pain unless they're doing some rehab that stretches things or recovering from a surgery, which she may or may not go through. We have a friend who has mild CP and has 3 kids.
Our Alicia races with a handcycle in long races. She's amazing, as your daughter wil certainly be too.
Good luck!
By the way, this whole experience made my daughter (A's mom) decide to become a doctor, which she now is. That's why I am so involved. This has all changed all our lives for the better.
God is with you and loves your little sweetie and, if you trust in Him, you'll be amazed at all that happens!
I am so sorry. I have 2 daughters with Mitochondrial disease, one who has it more involved than the other. When you first get a diagnosis it can be heart-breaking and scary and so many emotions at once. Let yourself cry as much as you need and then pick yourself up and brush yourself off and get ready to take one day at a time.
I would look for the cerebral palsy foundation http://www.cerebralpalsysource.com/Resources/foundation_c... you will get alot of answers there. Also, I suggest looking for a support group with other mothers like http://www.cerebralpalsysource.com/Resources/foundation_c.... If you need insurance help Children's Special Health Care from the state of MI will cover any out of pocket expenses. I rarely rave about services in West Michigan, but I have been very happy with Mary Free Bed's outpatient therapy services, they can help with a wide range of issues. I say all this to let you know that help is out there for you.
My heart goes out to you. My son was born at 26.5 weeks and spent 10 wks in the NICU, had the vent, etc. and also has mild CP. He is now almost 2 years old and amazing! We do work hard with him with the PT and OT but that is mostly to keep him on track. If it is any consolation to you he is talking, walking, and a total sweetheart. Be careful reading the internet - people do not post happy stories on the internet and there isn't a lot out there on mild CP. Please feel free to contact me and I will forward you my phone number if you want to talk or need any advice on the insurances and services available to you and your sweetheart. By the way - I also had a 2 year old when I brought my little one home - you are busy! You and your family are in my prayers.
Can't offer any life experience, however my thoughts and prayers are with you and your family. Have some faith and God will help you through this.
Of course you're having a hard time with this. That is soooo normal. No parent wants to hear that their child has a diagnosis. Give it time to sink in. I have a child with multiple impairments so I know.
Make sure you start early intervention whether it's private or you go with Early On through the state of Michigan. The earlier you work with OT/PT the better.
There is a little girl in my son's therapeudic horseback riding lessons that has mild CP. Her mom says you only notice when you spend an extended period of time with her. She is doing great!
The shock will subside. Give it time to sink in. If you're angry about this, be angry. If you're sad about this, be sad. It's ok.
I have absolutely no experience with this. All I can say is that I will pray for your family. Good luck.
Andrea-If it's mild just do what they recommend to keep her hip range as normal as possible. I do PT and have treated many CP kids and adults. The more you treat them normally and keep them loose where they are tight they do well. If it's mild you'll do fine too. Don't worry just follow the guidelines and enjoy her.
BeckyC
Andrea, Please check on line to learn about an amazing method of movement therapy called ABM (The Anat Baniel Method) Her work with children has been developing over the past 30 years and she has trained people from all over the country. I'm not sure where you are but in Michigan there are practitioners. I have seen first hand how these miracle workers can take a situation like you describe and turn it around with no pain and minimal time/lessons. In Bay City there is a practitioner named Suellen Bartel who has a website...Revitalize Yourself...please check that out as well. I don't have my addresses in front of me right now but if you want more info you can reach me at ____@____.com and I can get more info to you. My neighbor's 6 month old was favoring his left side, not rolling on it...they said it was a hip problem and they would send him to physical therapy. One ABM lesson and his hip was fine, the doctor saw him a few days later and was in shock...didn't refer for anything. Worth a try!
