New Member

iVillage Member
Registered: 04-25-2003
New Member
7
Fri, 04-25-2003 - 10:39pm
Well here goes. I am a married 31 year old mom to a 4 year old boy with ADHD and communication disorder, and 17 month old twins. My twin son has PVL, severe spastic quad cerebal palsy, cortical blindness, and seizure disorder(Infantile Spasms). My twin daughter has rib and spinal abnormalities causing scoliosis. I know that I can not be the only mom out there with so many issues but it sure seems like it. I am just looking for people in similar situations to share/vent with. Thanks
iVillage Member
Registered: 11-22-2000
In reply to: twinmom1101
Fri, 04-25-2003 - 10:59pm
Welcome!

I'm Lauren...mom to Joel, who's 9 and has an undiagnosable neuromuscular disease. It's closest to spinal muscular atrophy but he doesn't fit in with any of the known types of SMA. In addition to that he was born with arthrogryposis, which has now mostly resolved, as well as broken femurs, absent hip sockets, undescended testes and a urinary reflux.

I'm looking forward to hearing more about your family!'


Lauren


iVillage Member
Registered: 03-21-2003
In reply to: twinmom1101
Sat, 04-26-2003 - 3:01am
Hello,

Welcome to the board.

My name is Julie,I am a 27 year old,stay at home mom to 2 kids.A daughter that is 6,her name is Erika.And my son is 4,his name is Jon.He has Global Delays,Development Delays,Speech Delays.He was diagnosised with Mental Retardation last May.He has had 2 eye surgeries.He has Strabismus and Exotropia that deals with his vision and he has a lazy eye.He has low muscle tones also.And he is allergic to all dairy products,so we have to watch what he eats and drinks.And we have to keep a eye on his spine to see if it curves(scoliosis) again.We live in Tennessee.Hope to hear more about you and your family.Again welcome to the board,hope you stay with us.


Julie

 

iVillage Member
Registered: 04-05-2003
In reply to: twinmom1101
Sat, 04-26-2003 - 3:59pm
Hi, I am new too and after my first posts feel like what I have to say sounds alittle boring so I havn't posted for a while. My name is Netti and I am 37, married stay home Mom to Landon 11, Taylor 8 and Jenna 3. Jenna was born at 25 weeks and has lots of issues. She has CP, feeding tube, shunt, siezure disorder and doesn't walk, talk,eat,ect. She smiles alot and claps her hands to show emotion. (If she is smiling and clapping that's happy, clapping hard and pouting she's mad or bored!) She can sit for short periods but I can't walk away because she could fall over at any time. We just got her first wheelchair about a month ago and that has gone well. She will tolerate being upright for longer periods of time now. She has PT, OT, and Speech 6 times a week and recently an early childhood teacher comes with the OT. We live and rural SD and there is no one with a special needs child even close to Jenna's needs around here. I feel very alone lots of times when I get nowhere with her therapy esp. the oral feeding excersizes. We are starting thermal stim now using cold dental mirrors to trigger a swallow. Next week we take her to Fargo, ND for Botox injections in her hamstrings. Maybe when we put her in the standing frame she will not scream tremble and pound on her cheek. My husband is very good with her but is working all the time. He farms and in the winter works at a welding shop 30 miles away. Its usually 12 hours a day that he is gone. I have good friends and family but everyone is busy with there own family and our parents are in their upper 70's so their help is limited. My family is still reeling from my brothers death at 42 last Oct. He was killed in a truck accident. He left a wife and 3 daughters 16, 14, and 12. I miss him so much and have to work hard to keep fighting the grief. Sorry to go on and on... Thanks for listening and I'd like to make some new acquaintences too. Netti
iVillage Member
Registered: 04-25-2003
In reply to: twinmom1101
Sat, 04-26-2003 - 9:22pm
Has your daughter always had issues with feeding? Jacob is starting to eat really well but not enough. His weight is starting to become an issue now. He sees a GI doctor next week, maybe he'll give us some answers.
iVillage Member
Registered: 04-05-2003
In reply to: twinmom1101
Sun, 04-27-2003 - 8:33am
We have always struggled with feeding. She would suck, suck suck and wouldn't breathe. Then it would all flow out of her mouth as she gasped for air. We did this 8 times a day for an hour each time until she was 8 monthes old.( The first four monthes she was in the NICU) Then a feeding tube was placed. I still am not sure she knows when she is hungry although once her feeding has been running a while that's when she falls alseep, so she knows what a satisfied feeling is. It's a good thing that he is starting to eat well, maybe you'll get over that hump and he will be able to eat enough. We had a tube down her nose for a while to make up for the rest that she wouln't eat. Were your twins premature too? Jenna gags alot even on her own secretions. It is better now but still is there. It probably always will be. She used to take a pacifier like a trooper but after several bouts with respitory problems on the ventilator she has bad memories of anything in her mouth. The last time on the vent was 3 weeks and she never took a pacifier after that. We put baby food in her mouth and she pushes it out. It doesn't matter if it is chocolate pudding or prunes she hates it. The only way she swallows is if she is laying down and can't get the food to the front of her mouth and realizes she has to swallow. She used to be able to eat about an ounce of baby food, but if has steadily decreased to sometimes no swallow at all in a feeding session. I can at least half way clean her teeth, without toothpaste, that would gag her for sure. It is very frustrating and I feel lots of times what is the use? Why put us both through this? But I keep trying because I know I am her only hope of ever even having clean teeth let alone eating. I think its a good sign that you have made it this long and that he is eating better. Hopefully that will pick up and his weight will increase, I bet it will. Good Luck at your appointment next week! Netti
iVillage Member
Registered: 04-25-2003
In reply to: twinmom1101
Mon, 04-28-2003 - 8:42pm
They were born at 32 weeks not too early or too small. Their problems started soon after birth with some type of virus they caught. Jacob too has the worst gag reflex. At least it keeps me on my toes.
iVillage Member
Registered: 03-21-2003
In reply to: twinmom1101
Tue, 04-29-2003 - 7:18pm
Hello Netti,

Welcome to the board.I am Julie a stay at home mom to two kids.I have a boy that is 4.He has Global Delays,Development Delays,Speech Delays.He was diagnosised with Mental Retardation last May.He has had 2 eye surgeries.He has Strabismus and Exotropia that deals with his vision and he has a lazy eye.He has low muscle tones also.And he is allergic to all dairy products,so we have to watch what he eats and drinks.And we have to keep a eye on his spine to see if it curves(scoliosis) again.We live in Tennessee.

Sorry to hear about your brother's death.(((((((HUGS)))))))))Right now I don't have my son in any therapies but plan on starting some again soon.My husband works second shift a hour from here.He works alot too.Hope to see more of you.Again welcome.

Julie