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Raising Special Needs Kids Raising Special Needs Kids

New here and beyond stressed... Long...

Posted by on Sep. 12, 2012 at 2:20 PM
  • 4 Replies

Hello!

My husband and I adopted a little girl with Spina Bifida 2 years ago. It has been a very stressful 2 years! How do you Mom's deal with the stress??? Our daughter spent her first 4 years in a hospital, due to her health and being a foster child... She was on a ventilator, never talked, never swallowed or ate by mouth, never walked. We were told she never would do any of these things. Since having her, she was weaned off of her vent, swallows, eats some by mouth, walks with a walker and talks, a lot! 

I have so much stress dealing with her medical supply companies, her speciallists and caring for her every day, urine cathing her and g tube feeding her. On top of every day care, every time she goes back to the hospital for care, she completely regresses back, and we have to start all over again with everything. She CONSTANTLY grinds her teeth, CONSTANTLY, nothing we can do because she still has baby teeth! She also gets plugs in her trach often, requiring emergency trach change and ambu bag to get her back, she goes fast. We also have had issues with having her trach removed, the hospital messed up the last attempt! This past regression has been the worse so far...

We also have another child that is 8 years old, whom I feel is neglected because I spend so much time on the phone with specialists and caring for our daughter...

We had in home overnight nursing in the beginning, but 2 nurses smoked and one came to work with the flu, we had them for a 3 month span, only working 2 weeks between all 3!

I hired a college student to stay overnight to suction our daughters trach when needed so we can get a full nights sleep, but she up and quit with out notice.

The 2 years we have had our daughter, she has been attached 24/7 to me, my husband and I are the only ones trained for her her trach plugs, and I don't think anyone else could handle it, I just can't seem to get any help! I have health issues coming up that I know is due to all of the stress in my life, high blood pressure on top of others.... I don't have any help or anywhere to turn to, I don't know how much longer I can continue this way and what to do to get help with my daughter... How do you Mom's do it???


by on Sep. 12, 2012 at 2:20 PM
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Replies (1-4):
mandee1503
by Amanda on Sep. 12, 2012 at 3:10 PM

Welcome to the group! My ds isn't as severe as some kids, but there are days where I don't have a clue how I make it through. *hugs*

darbyakeep45
by Darby on Sep. 12, 2012 at 8:07 PM

Hugs mama!  I can only imagine how tough things must be for you guys right now...especially having another child to take care of as well!  My son has multiple diagnoses, including Cystic Fibrosis, and he has a g-tube, does breathing treatments, chest therapy treatments, etc. to stay healthy.  I can somewhat relate, but he doesn't have a trach.  I know children with trachs and know a little about what they go through.  You have to stay strong mama...you can get through things...one day at a time mama!  Hugs!

sammygrl77
by on Sep. 12, 2012 at 8:12 PM
1 mom liked this
(((Hugs)))

The only way I make it through is having breaks while the kids are in preschool. I hope you can find some reliable help. Sometimes it takes a while to find the right fit.
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lifeisajoy
by on Sep. 13, 2012 at 8:04 AM

Hugs!!  We adopted our son 7 yrs ago when he was 12-- When we got himHe did not use toilet, he did not use gait trainer or walker, he did not use any communication methods, and he never saw a gastrologist and to find out he had severe gastro issues for YEARS no one ever took care of, he would bite, hit, kick, pull and more--  He will always need 24/7 care, he has cerebral palsy, he now is 19 and on a toddler/pre-school level, he uses wheelchair--now he uses toilet (due to neglect for years of gastro issues he unable to do #2 but he tries but he does #1), he now walks and stands in a gait trainer and walker with assistance, his behavior (negative) is to a minimum and he is now able to be redirected, he now has numerous ways to communicate-adaptive sign, talk box, pictures/pecs/picture badge, schedule, picture books and he is so stinkin happy--

To say yes oh my the first two year just getting use to all his specialist and to call and to get all his equipment--oh my did it feel overwhelming--not saying I don't know more at times but I take one day at a time and advocate for what is priority for that day-

Also with the home health care--I would switch agencies and demand certain people--we have had to --we have home health care and I do not accept people that don't do their jobs-not saying that is easy-heck no to get good help but I am that phone and somedays I want to pull my hair out with all his providers and everything--Oh it is hard to find good help-oh it is!!!

I look back and see how far he has made it and then I settle

Wow!! You have done so much for your daughter and she has come such a long ways that is so awesome!!!  

Message me anytime and take care 

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