Parents with children that have disabilities.?

[»•αsнℓεч•«!]

Well, I wouldn't consider my son having a disability (which I guess you can say i'm in denial) but anyway, my son has HSV encephalitis on top of having malaysia. He is currently 3 months old which he has been in the hospital since he has 6 days old. The whole pregnancy was normal no complications, no major issues, NOTHING! He went home like a normal baby would and everything. On the third day home he started turning purple so I rushed him into the local hospital, which they transferred him to Childrens hospital of Wisconsin. During the first couple of weeks they found out about his malaysia (floppy airways) then after a few tests they found about his HSV encephalitis which just so happened to be in his brain. It was a complete surprise for his father & I because we had no history of herpes what so ever! Which later on during my 6 weeks check up I found I'm a carrier of the virus but don't currently have the herpes virus which if was basically a fluke my son received herpes while in my womb. The 3 months that he has been here cured his HSV encephalitis which has left scar tissue in parts of his brain (nothing that should effect his breathing) has been all cleared up. The doctors are still clueless about why he breathes so fast and has random de-stats (drops in his oxygen levels). He has a G-Tube & a J-Tube because he breaths so fast he aspirates any formula put his in mouth he even aspirates his own secretions (mucus). Also as a side effect for the encephalitis he has seizures.. I just didn't know where else to turn too. I'm not looking for right or wrong answers I'm just looking for some advice.



Now a little about me:

I'm 20 years old, I also have a 2 year old son (which makes this whole situation worse), a semi-supportive boyfriend (works a lot), my own house, car, everything.

***** I really don't want to hear i'm young to have to kids, because obviously i'm on my feet!

I just really would like other parents input thats actually been through something similar, or just any input about having a normal child then your second one having medical issues. Basically i'm just at my wits end because I'm VERY overwhelmed any advice would help...

Thanks for reading. Enjoy your day/night (:

[Bobbi]

Make sure the oldest has special time with the parents, so your oldest does not feel left out. It can be easy to do, you are drained from caring for one that the other feels pushed aside or feel not that 'special'. Have you applied for social security disability for him? That might be a help too. Every kid with special needs seems to grow up with their own quirky way to adapt. My son would hide his hearing aids so he didn't have to listen to me. His brothers would encourage him to go without the aids, as rough boy play they tended to fall out and all three would be in trouble. So again, kids adapt! best wishes

[CysticFibrosisMama]

Well I have the opposite problem. My oldest has cystic fibrosis and my youngest is CF-free. Honestly, I just take one day at a time. I know there will come a day down the road where my youngest will wonder why it's hard for him to breathe and he has to have all these medications and treatments while his brother doesn't have to, but I'll cross that bridge when we come to it. Just love your youngest right now the exact same way you love your oldest. And NEVER lose your temper with your oldest just because of the stress that your youngest's issues will give...

Also, find a group on facebook for moms of children with the same issues as your child. It helped me TREMENDOUSLY to find a CF Mama's group to vent to and ask questions to.