Hi Everyone,
I have been reading the posts for some time now but this is my first post. My son was born with esophageal atresia(a disconnect between the esophagu and stomach) He was fed througha g-tube and was on a suction machine for the first 5 months until he had surgery to repair it. At 3 months he became critically ill. He was dehydrated, had a massive urinary tract infection, and his electrolytes and sodium levels were so low that the doctors weren't sure if he would make it through the night. After 3 days of getting him stabalized he starting having seizures. He was later diagnosed with infantile spasms, at 9 months, and at 1 year they diagnosed him with biplegic spastic CP.
My son is now 2 and I feel like we are making no progress. He has yet to sit up or even roll over. He gets Pt, OT, and Special Education 1x a week and he gets speech 2x a month. All of which I believe is not enough. He does eat orally but latelly has lost his ability to suck so I feed him his bottle through his g-tube, thankfully we still have it. We practically forcefeed his cereal, veggies and meats because he sticks his tongue out which is his way of saying no more. I just don't know if it is nuerological, due to his reflux issues from his esophagus surgery, or related to CP. He isn't the best sleeper but is getting better thanks to benadryl which is given to him nightly.
Thankfully he is a very happy boy who loves to smile and flirt with everyone and I have a lot of support but I feel like sometimes I don't even know whats going on with him. It is very frustrating.
Does anyone have any advice or words of wisdom before all my hair turns grey and falls out :) ??? It would be greatly appreciated. Thanks!!

Hi,,
Your post brought back some memories for me,,my son who is now 15 was born with CP,So I know your frustration!It is so good to hear about the smiles and flurting,that is a good sign that he is aware and alert of his surroundings!!My son did'nt sleep well as a baby either,I don't know if it was from the CP or the meds he was on.Don't ever give up hope on the mobility of your child,but don't drive yourself crazy thinking there is a miracle drug also,not being negative,but from my experience,I can tell you that a person can get worn out fast and that baby needs you!I tried it all,,therapy 2x week,,went to every doc around these parts ,,and the fact is I have a 15 year old newborn,,he has so much love,smiles,,and flurts too,lol,,he is happy and thats enough.I finally came to the point to realize that,and life for us all was easier.My son is in a wheelchair,I have to feed him,and he still wears diapers,,I am worn out sometimes,,but he is mine and I am so thankful to have him ,,he fills our life will so much love! I wish the same for you and believe it will get easier if you let it.Love and Prayers.

Hi Dina224,

Wow, your son is tough! And you must be a supermom!

The most important thing to me is that my children are happy. And I know that your son's smile brings joy to your heart.

My daughter's cp isn't as severe as your son's. Though she has an 8 year old cousin who has a very severe form of it. Even though he's blind, nonverbel, has a g-tube, and in a wheelchair, he gets to do more things then regular kids do. He has been all over the country on family vacations (they tend to splurge on themselves). That child has seen three times the places I have seen in my 27 years!

Take care,
Melissa

Thanks Melissa and Dessell,
He is so happy and such a blessing to this family. I know I should just relax and enjoy him more but I just get so frustrated and I think he does too. He really works hard and then he gets all tight and clenches his fists and just clams up. Then he smiles though like he knows he is driving me crazy:) Dessell, does your son sleep now? When did that change and what did you do?

Hi,
it so hard in the early years isn't it? especially when your child is ill. It does sound like your son is right up there cognitively though which is marvelous! I agree that PT once a week is not enough.....it seems like its all dumped back on the parents and it so hard when you live with it 24/7. my daughter was also a dreadful sleeper and I'm sorry to tell you nearly 18 years on that not much has changed! lol she tells me her muscles jump and keep her awake and that also she just doesn't get tired.....but according to her if shes awake we all should be...shes so into sharing.
theres no easy answer as to what the future holds, my daughter is severe spastic quad, she drives a power chair but she is just finishing high school this year, all done in mainstream! these kids can wear you out and drive you batty.......send you grey and insane....but they also can give you a lot of love and they can achieve SO much.....just be sure not to think he can't do things......we went through a stage of wanting to protect aletia.......its such a dangerous world for a child in a wheelchair, but she has proved to us time and again that she is an independant person and needs to be given the chance to fly. its a hard lesson though.
sometimes it seems we get nowhere, but then they will go forward in leaps and bounds....it took aletia till her 10th birthday to learn to sit up from teh floor herself! but what a celebration when she did.
the sticking the tounge out bit sounds like a tounge thrust reflex......little babies have it and kids with cp quite often don't ever lose it....like teh startle reflex babies have....my daughter at nearly 18 still has a startle reflex.....a real pain at times! hang in there you will get through.......
Linda P

Dina,
I know it is frustrating and its easier said than done,lol,just take good care of yourself so you don't get worn out sweetie.You know,I am not sure what it was that helped my boy to sleep all night ,,I think it was just time.But I did start a bad habit with him as a baby,he would only sleep with me,,and to this day,15 YEARS LATER,,that stinker will not go to sleep unless I ly down with him,,I have to play possum til' he falls asleep,then sneak out,,lol,,but it works and we all get a good nights sleep.I want you to know Dina,you and your son are in my prayers,,with love and time,,things will get easier.
Dessell

Dina,
I know it is frustrating and its easier said than done,lol,just take good care of yourself so you don't get worn out sweetie.


Very important advice. Always try to take time to yourself every now and then to pamper yourself or do something for yourself. Children like to see that their parents are relaxed and happy.

Take care :) ,
Melissa

Reading these posts bring back memories. I'm a 35 year old spastic quad & I've proved all those "professionals" wrong. I've lived on my own since age 20 & have lived in 2 different states since then. I have a bachelor's in social work w/ an emphasis in special education. Although I'm sporadically employed 'cuz I don't drive, all of my jobs have been in the same field.

Don't get discouraged. His reflux will likely be a lifelong problem that can be managed but not cured. I'm still really sensitive to food textures. I think there is a tendency for parents & others to want to "fix" everything. While there may be a medical cause for a behavior, he's in his "terrible twos" & will test you like any other kid.

My son that has CP will be turning 7 in just a couple of weeks. Reading your message brought back floods of memories of when he ws a baby. He was so very ill (and the doctors said he wouldn't survive at all...what do they know?)
He was tube fed (expect for the two years he was exclusively on IV nutrition) until he was 4 years old. Then we were able to get him eating some orally, and supplimenting with tube feeds. I took his mic-key button out on his 6th birthday! He didn't sleep through the night until he was 5 years old. He was on oxygen until he was 4 1/2. Despite all that he's been through, he has always been a very happy, smiling child. He began sitting at 2 1/2 years old, and walking and talking at 4 years old. He now walks independantly, although he is still quite clumsy and falls often. He gave up his walker last year in kindergarten, even though his physical therapist still wants him to use it. He now attends mainstream 1st grade with special education suppliment. He still has primative reflexes (ATNR, tongue thrust, and startle) and he is not toliet trained. He has endured 29 surgeries to date (soon to be 30 because his stoma will not close on it's own after a year and is leaking stomach content) Don't give up!! I lost count of how many doctors told me he would never survive, and IF he did, he would never do anything. These kids are fighters and can beat amazing odds. As others have mentioned, it easily becomes overwhelming but it does eventually get easier. You just have to make time for yourself and your spouse. Look into respite care in your area. There are often grants or state programs that help you pay for the extra help.

hi, when I was a baby i was not able to suck on my bottle so my mom enlarged the holes in my nipple. it took me a few hours to finish my bottle then it was time to feed me again. i couldn't sit up or roll over or hold my head up` by myself. i came a long way. Look at me i am tying on my computer with a spout around my chest. your baby will amaze you what it can do. God won't give you both more than you can handle. always trust in God. i enjoy my life having cerebral palsy. i have alot of love for God and for my parents. Mary

Hi Mary,
it's very pleasant to read such a nice post. It is too bad we were not all able to breast feed. I was in an incubator for my first 6 weeks... I have never had any problems sucking or swallowing, although I have known many who have. I was born in 1950, with Spastic Diplegia CP... 2 pounds 8 ounces