Hi, I am the mother of one year old twin girls who were born 9 weeks premature. Erin spent two weeks in the NICU and is completely normal developmental wise. The second twin, Ella, spent 5 weeks in the hospital with apnea and bradycardia and was on the ventilator twice. I was in labor on and off for two weeks before they finally delivered me. That was only after I had so much stomach pain (not contractions that time) and a fever for 5 days. After 5 days with a fever and no antibiotic treatment, they induced labor because they thought i had and infection in one of the girls amniotic sac. I delivered vaginally and the the second twin was slow to deliver. She was immediately placed on the ventilator.But besides the normal things that u would expect for babies born that early, they did well. At 3 months old both the girls got a stomach virus. Ella cried constantly and could not be comforted and would not eat. They admitted her in the hosptal but couldn't find anything wrong with her. During the night in the room with me, she started having what i thought were seizures, but no one would listen to me. After about 6 hours, a nurse noticed the same thing and they immediately placed her on an o2 sat monitor and her sat was in the 60's. She was placed on the ventilator and after numerous tests and an MRI, they determined that she had suffered an anoxic brain injury, either sometime recent, or posiibly at birth. I think it happened at birth. We were told she would never be able to do anything, including see or hear. She is now 1 year old and is just now rolling over and grasping things but is only delayed in motor skills. She is in therapy, but is still not close to sitting up. no one has ever gave us a diagnosis of CP, but i am convinced that is what she has. i am just wondering if there is any way to tell if this may b just a mild case of CP?
Wow, I am sorry to hear your story. SATS of 60 is really really low... Does she still have seizures?
Doctors are reluctant to make a diagnosis of CP too early so I would suggest that you push the issue slightly with them. Does she have head control? If she is grasping things, it is a good sign. She might have cortical visual impairment (where the brain doesn't understand the picture the eyes sees) but if she is grasping, she is seeing. If her brain scan says anoxic brain injury - meaning a period of NO oxygen to the brain, then it is CP. CP is a general term under which most mobility issues are classed. My son had a hypoxic incident at the age of 5 months and was brain injured. He was not born CP but is treated the same as a child with CP because that is the general term. Good luck to you. Dont' give up hope just because you said the words CEREBRAL PALSY !
She does have good head control and is grasping things well with her left hand, not so well with the right, but she can. No seizures since the initial ones while she was in the hospital and she has been off seizure meds since september. She is very alert and responds to everything. Her main issues are sitting up, crawling, just maintaining any kind of balance. I am so hopeful that she will eventually figure it all out, but it is so hard to watch her sister running around everywhere while Ella just can watch her. Her MRI was consistent with a anoxic brain injury at some point, but her MRI looked so bad that they really didn't think she would ever be able to do anything. Thanks so much for your reply.
Then she is doing amazingly well considering. But, I know, I'm there, considering what? My son's MRI is a total disaster area and it is a direct reflection of what is going on with his development. I am sad but greatful that he is alive. It seems as though his development has arrested. I think it is the best idea to get her a follow up with the neurologist and then get into some form of therapy to try and correct her movements and improve and develop. Children with CP also develops but sometimes with abnormal patterns and that is why therapists help to correct those patterns their brains create. I know how you feel (I have two other perfectly normal children) and it breaks my heart sometimes to see him sit and watch his brothers play.., I do encourage them to play with him and they do include him as much as they can, but they also need to play "normal" games. Do the best you can for her. I am sure the rest will follow. Good luck
Well, she saw the neurlologist yesterday and he finally did diagnose her with cp. Even though I knew all along that is what it was, its still hard to deal with. My husband is in total denial. I just want her to be the best that she can be and do all that God wants her to do. The neurologist said that he thinks that mentally she is fine. She is going to have problems with sitting up and walking because of the muscle tightness. At this point the Early Intervention program only sees her twice a month. I work with her at home the rest of the time. I'm just wondering if she will ever overvcome these obstacles. Is it possible? In other areas she seems to be progressing like with the feeding issues and the rolling over. She finally overcame those obstacles. She just can't seem to get the hang of sitting up.
I am sorry to hear and at the same time I am glad. Glad because it is not a progressive type of disease and sad because CP is an ongoing struggle. I might be over generalising now but dad's usually handle this worse than moms. Moms just want a name and treatment and get on with helping the kiddos. Dad's want to fix things that are broken and all things can't be fixed. Let the therapists lead you with her therapy and they will be the best judges of her future abilities or disabilities. And even then it's not a given. All children are different and she might just overcome most of the obstacles in her way because she seems to be doing great despite the odds. I wish you well and all the best with your little ones. Give Dad some time and involve him as much as you possibly can. Just remember that both of you need to think about counceling at some stage, sooner rather than later. This thing can bring you closer together but it can also tear you apart. And this is a difficult time for both of you. I hope all goes well. Keep us posted.
I just wanted to tell you that in reading your posts, your little girl Ella is amazing, and I truly believe a miracle. With an MRI that bad and being able to function normally in all area's except her motor skills, she is such a strong girl. It just goes to show how amazing the brian is and the capacity it has to recover and re-direct the communication etc...to get things working again. I would expect great things from her, and always remain hopeful that she will overcome the physical limitations she has right now. Even if she doesn't fully....I think parents assuming their children will beat the odds really helps them. Continue with the therapy at home ....and she will go beyond her potential.
I'm glad your little girl is doing good....about the early intervention....my daughter and son were in it and they were able to get 2 hours a week...I think you should talk to your case manager....also I think since she has a diagnose she can get therapy from your insurance.......you might want to read welcome to holland and what? and so what ...they are under recent activity .....best of luck
She is a miracle. They told us after she had the initial seizure episode in the hospital and ended up on the vent that she would probably never wake up and if she did she would be a completely different child than the one we walked in there with. It was so hard to hear that and there were days that i didn't think i could go on. It happened the same week that i was supposed to go back to work after my maternity leave, so i took one more week off before having to go back. The first day back at work, my husband sent me a picture of my little girl who had not responded to anything in a week smiling. its like she just woke up. The doctors could not believe it. They even did a second MRI to see what could have possibly changed. Of course there was no change on the MRI. And the third one that she had in Sept. was even worse. That say it is consistent with a child that should be blind and deaf and basically nonresponsive, and shes none of those things.. She is truly my little miracle and now I know just how much prayer and faith in God can work miracles. I don't think I would have her any other way because she wouldn't be Ella. She is so happy and to look at her u would never think there was anything wrong with her. I have accepted all these a long time ago and knew all along what it was since I am a nurse. But miracles still do happen and doctors are nothing compared to God.
My son's doctors didn't want to him a CP diagnosis either. It was actually his speech therapist who diagnosed him...gave me a book "Handling the young cerebral palsied child at home"....I said "You think that's what he has?" She said "They haven't told you yet?". I took him to a "CP Clinic" where we were given the hard, straight up truth. Adam was 3 years old at the time. We were told his chances of walking were like winning the lottery. And if he could talk, it would only be something those close to him would understand. They were right.
But.....I had pretty much concluded long before then that my Adam was pretty much not going to be an interactive child and would never understand anything around him. Then........he began responding to one particular musician. It was then that I realized...he KNEW.....he knew more than what I gave him credit for. I never doubted his abilities after that. In fact, I probably exaggerated them!!! LOL
As far as Ella watching Erin zoom all over......I had 1 child before Adam and 3 after. Sometimes I think he would look at them and think to himself "how come I can't do that?" but most of the time he would just laugh at the things they did!
There will be good days/moments......and there will be testing days/moments......as it is with ALL parents. Your little girl just offers you more of both!
(ps.....I'm a nurse too...but sometimes the mom takes over and the nurse brain leaves) ;-)
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