Re: Medical strollers?

[Guest guest]

> Tamara,

We all had those hopes and dreams. But now we re-adjust and make

different hope and dreams for each individual child. We never

thought would walk and she did. I never thought she would

say mom, and she did. It is very hard to comes to grips with what

should've been. Its normal. It's heartbreaking to see our children

try and fail, but they do try.

As far as the wheelchair (medical stroller) goes, we are in the

same boat. walks well. Sometimes she just ets tired and

cannot go on. I am working on getting one for those just in case

times. It doesn't mean defeat. Each thing we do for our children

medically and developmentally, helps them to do things we never

thought they would.

I know your heart breaks, as does mine. But when I see her walking

and talking-of course in her own unique style, my heart fills with

joy. I am sure that yours does as well. It wouldn't hurt to get him

fitted for one for just in case times.

Dawn

[Guest guest]

I know exactly what you are talking about. We recently got Asenath on the Brain Injury Waiver and they told us we need to get her a wheelchair, mostly for away from home trips and for the future. We are scheduled to go to a wheelchair "specialist" (can't think of the right name) for proper fitting to make sure we have all the components we may need for Asenath in case she suffers further strokes than cause more disability. There will be a physical therapist there as well to cover all the ground to make sure we don't miss anything we may need. It was hard to talk about the possibility of Asenath having a stroke that could cause her to not be able to hold her head up or to sit by herself. She has had two separate occasions where she was unable to sit by herself but thankfully they lasted only a few days each time. I realize the chance that she will become further disabled is great due to the vasculitis and Mito issues, but boy it is so hard to think of her that way-losing so much. Chemo talk also has been worrying me and I know this could also cause further issues with strength. We will get all the additions to the wheelchair in a way that can be detachable. I was told to get a place for oxygen hookup, a reclining chair with harness/head stabilizers, etc. At this point Asenath walks on her own with DAFO's but needs the chair for reasons of fatigue. Isn't it hard to think of your child needing further assistance down the road?! I know you guys understand that. Darla (Presumed Mito): mommy to: Asenath (4 yrs. on March 3!!!) Mito and Brain Vasculitis, strokes, SLE's, DAFO's, G-tube, seizures, migraines, disautonomia issues (tachycardia, apnea, breathing regulation issues, oxygen use at night, etc.), metabolic acidosis STILL, Carnitine deficiency, speech/cognitive delays due to strokes.. Zipporrah (4 mon. in a week), Assumed Mito, lactic acid issues, SLE, left side affected, tight muscles, spilling organic acids & orotic acids, not breaking EMG's down (?), apnea, pulse ox revealing instability with oxygen levels.. Luke (15), Leah (13), (12), Isaac (10), Tirzah (7), Kezia (3), Marquis (2) and hubby Dean. NOW YOU KNOW WHY I DON'T WRITE IT EVERY TIME...TAKES TOO LONG!! Medical strollers? I know I ask a similar question this week about different types of strollers. My question now is when do you know when it is time to get a Medical Stroller? This is very hard for us and really do not want to rush things. is almost 5 years old, still able to walk(with AFO's and a very awkward gait and falls alot). Yet in the last two weeks we are having to carry him more than not. He gets so tired and his legs will just buckle and he will fall to the floor. He told his therapist this morning that he is run out of batteries, I just cried. I guess I knew this moment would get here sooner than later, yet I thought much later. I know we do not have it so bad, because I know alot of you sweet babies are unable to walk. And that really makes me sad.Yet when someone is pregnant you have such dreams. Playing ball, riding bikes, skating and so on. Yet we find ourselves praising when he goes down the stairs by himself, which is very hard for him. I have only been with this group a little while. But I do not know what I have done without you. Some nights I just read your stories and cry. Wishing I could make everything better, but I can't. So I just pray. I do not know how many of you believe in prayer, but I am a firm believer that one day our babies will be just fine.Thanks for everyones support! I guess I am just really depressed thinking of having to get a wheelchair for my baby!God Bless!Tamara