#1
Posts: 5 | Threads: 2
Joined: Jul 2011
Reputation: 0

  • Registered
Hi. My daughter is 6months old, she still isnt smiling or makin good eye contact. She cant hold her head up and doesnt show any emotion in her face at all. She barely cries, never really for a feed, she does the odd time for a cuddle! She has always been a sleepy baby. She was 6 days over due and the pregnancy went brill, much better than my 1st daughter who is now 4. She came out very fast and had really bad facial congestion. She also had a fractured right clavicle as her arm came out the same time as her head. This healed by itself within 2wks. Her head was out for about 5mins before my next contraction to push her body out. I had a waterbirth. She never did that big cry when she was born and needed oxygen for about 5-10mins. She keeps having some sort of seizure, it has happened about 4 times now. She did it the other day when we wer in the supermarket, her eyes roll to the back of her head and she clenches her left hand and shakes. She was sat in the baby seat in the trolley and i just grabbed her and held her close to me because i didnt want anybody to see her as it is really scary. She just snaps out of it aftr 5minutes maybe abit longer. We recently meet with the pediatrition and neurologist and she is going for an mri scan and blood tests, she also has physio once a week. I cant believe this is happening to us? Im so scared and just want everythin to be ok. She's our little princess, who is so beautiful! The ped said that something is wrong and she's not just going to catch up. Which is what i have been praying for. I feel so upset and hate seeing any other baby her age, as it brings it to reality how under devloped she is. Can anyone relate to me? Be nice to talk to someone who understands. Xxx
#2
Posts: 347 | Threads: 17
Joined: Aug 2010
Reputation: 0

  • VIP
Hi tan , just saying hi , I'm on bounty site and been talking with you . Hope someone else can give you some more insight on here .If anyone can help out on here they will , nice group we have x
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#3
Posts: 128 | Threads: 15
Joined: Apr 2011
Reputation: 0

  • VIP
Hi, yes I can relate.
My son was late with all milestones. Reading your birth story raises a few queries in my head, but I would wait to see what the MRI does or does not show. For answers to the fitting also, wait to see what your tests say.
My son found eye contact hard because he had little head control, he started physio at 9 months old, and they helped him with head control, rolling and now we work on sitting and standing (hes 3 1/2 now)
My advice, don't panic and try not to worry. The Paed is wrong to say she will never catch up, my son is and there were so many things that they said he would never do that he's found a way to do.
Take each day as it comes, please ask me any questions, I've been there. Smile
#4
Posts: 72 | Threads: 6
Joined: Jan 2010
Reputation: 0

  • VIP
Big hugs you sound like you're finding things difficult. I was aware from not long after birth that my son had problems but we have quite an unusual situation in that when we realised something was wrong we also realised that I had had the same problems as a baby but had possibly been misdiagnosed. But even though my son's weakness and problems were severe, in my head I just though everything will be fine and so did all the family, so it was very hard to see other babies his age and see how they were developing. I was very fortunate in that our Physio put us in touch with a charity that provided play/physio sessions where the staff take the baby into the playroom, and the parents sit and have a coffee and chat in the parents room. This was invaluable as I met lots of other mums and dads in similar situations. I just couldn't cope with the standard parent and baby groups in the early months it was too hard.

I wonder if there is anything like that in your area, we are on the Wirral.

My son is now 3 and half and we are still waiting for a diagnosis so sometimes you don't get quick fix answers but he is the most amazing little boy and we delight in every little tiny achievement.

I hope you get some more answers soon.
#5
Posts: 5 | Threads: 2
Joined: Jul 2011
Reputation: 0

  • Registered
Thank u both for your posts. It really is nice to talk 2 other people who hav been or are going through the same thing. I just keeping asking myself why? How has this happened? I feel like i dont know what to say people when i see them in the street and they go to look at my gorgeous girl, and she never focuses on them and doesnt seem to pay any attention to what they are doing or saying? Im used to the way she is because thats her to me and it doesnt make a difference but to others she seems different! I just wish i cud turn around and say... 'she has this' or 'she has that' its just the not knowing thats the worse thing! I hope something does show up on the MRI then at least we will know and we can go on from there and try to improve and bring on the best in her! What do you say to other people? Also i dont know what to do about childcare, my mat leave ends in sept, and we cant afford for me not to work. Im a part time administrator and do mon-fri 9-1 so it fits in well for my other daughter who is startin sch this sept. My mum is havin my little girl 3days a week so she will hav 2 go into childcare the other 2mornings. Will she have to go to specialist childcare? I dont know what to do! The thought of leaving her breaks my heart and scares me especially with her seizures! Its so hard and difficult! You are all doing so well and shud be so proud. I hope i can be just as brave as u all r. Im trying to be, everytime i look at my daughter i feel my heart clench because i love her so much. Im determined to give her the best possible life i can. Which im sure is what we are all doing. Xxx


Users browsing this thread: 1 Guest(s)