[wendygrace]

My name is wendygrace, 28, and dh is Mick, 30. We have a 15 month old son who was born with a Giant Omphalocele...his organs were born outside his body. We were in the hospital for 6 months, on a ventilator for 4 1/2 months, still on a feeding tube (NG as we refuse more surgeries for a G-tube), came off O2 about 3 months ago (and goes back on during colds) and was released from a DNR about 3 months ago as well! His Omphalocele is still not repaired. The organs are covered by a membrane and skin grafts. He looks as pregnant as I am currently.

: He also developed cerebral frontal lobe atrophy. They are not sure how, but I suspect that the doctors screwed up at some point as he was not born with that problem. He has communicating hydrocephalus as well due to atrophy around his ventricles. He is currently in speech, occupational, physical, and developmental therapies. Thankfully, so far he is behind but at 15 months he's anywhere between 9-15 months so he's doing pretty good with his progress. He's a happy, joyous child and we love him to pieces.

I just wanted to introduce myself here and hopefully I can help with insight into someone else's issues.

Oh, and my littlel sister has Down's Syndrome (17 years old) so I may be able to help there as well.

 

[Piglet68]

Hi Wendy!!

It sounds like you and your family have a lot on your plate. I can't get over how proud and "with it" you sound, despite the obstacles you've faced and continue to face. You and the other mamas on this forum are a constant source of inspiration for me. This forum doesn't move too fast, but there are some very wise mamas here to lend you support, and who could also benefit from your wisdom!

 

[SunRae]

Hello, Wendygrace! I had never heard of a Giant Omphalocele before. You've really been throught the wringer! Will they ever be able to completely repair the omphalocele?

I'm just amazed that your son is that far along in his development after all that time in hospital and with all his problems. Maybe I will have to give you my son's title of "Wonder Baby"!

My little Sammy has Down's, and I am curious what it was like growing up with a sibling with DS as we are going to have a least one other child. I see you and your sister are quite far apart in age, but maybe there were other sibs in between; were there any problems with your sister not being included in activities with other siblings or other kids her age at school? Were you ever embarrassed by her or resentful of your parents' time spent on her? Anything you can tell me about the experience would be helpful.

Nice to meet you!

 

[wendygrace]

Nice to meet you both. Yes, Michael's "O" will be corrected but probably not until he is about 4 years old. We will just wait and see and take our time.

As for living with a sibling with Down's. I will tell you that it is not easy but doable. I am the oldest at 11 years difference. Then my next sis who's about 7 years difference, and then the "little" sister who is 18 months older than my sister with Down's. My sister who is 18 months older completely resents the baby. It really is awful. Me and the older sister (Liz) are much more understanding. Actually, Liz has the best relationship with the "baby".

I think the 1 1/2 year difference was way too close because the "baby" always tried to do everything that my little sister tried to do and failed...and got in the way. But, it was also hard for my parent's to accept so that had a lot to do with it. Liz and I were old enough to understand that it wasn't the "baby's" fault nor my parent's and we just dealt. My little sister just didn't understand and has therefore, harbored a lot of resentment. I think what might have helped is a better attitude from my parent's and more one-on-one time with her by my parent's.

I do have a neighbor who is 24 and has 3 kids, 4, 3, and 1 and the 1 year old has Down's. The kids seem to not be having any problems with the baby at all. I think a lot just has to do with her attitude. I think 17 years ago, Down's kids were not accepted at all but now its coming around. Family support is also important.

Suggestions? The big thing we are facing right now is "what to do with her". Meaning who will take care of my sister when my parent's pass, how will we afford it, and should we consider an assisted living situation. Start a fund for living expenses now. Also, look into SSI (if you are in the US).

Finally, just enjoy your wonderful baby. Down's kids tend to have a wonderful disposition. Do be aware of the health risks and it will be a long battle in schools and other community activities but Down's kids can go far.

I hope that helps. Let me know if you have any other questions or just want to chat. I've played second-mommy to my sister for a long time.

 

[TwingleyMom]

Wendygrace! Just wanted to welcome you over here. You guys have sure come a long way since this time last year.

Michael is such an inspiration - he's truly a wonder kid. And you're doing soooo well!

Jennie

 

[indiegirl]

Welcome!