and Anabelle

[Guest guest]

Dear -

Anabelle sounds precious. I am guilty of not having been able to go through the

posts very carefully, so I apologize if you have already received replies to

your questions. For our son, the most difficult thing was gravity. Holding his

head up while on his belly. Holding himself up while sitting. We encouraged

sitting for as long as he would tolerate it (they have these great " Bumbo " seats

now!) and laying him on the floor on his tummy. Sometimes we would roll a

blanket into a log and place it beneath his shoulders, givinghis face some

clearance - motivating him to look around. The best exercise we had was on a

large gym ball - I think about 24 or 30 inches in diameter. I could sit him on

it, holding his hips firmly, and gently push down on the ball, making a slight

bounce - which would challenge his balance. I could also gently roll the ball

forward and back, and from side to side, causing him to use his righting

reactions and straighten up. Later, I could put him on his tummy on the ball

and roll him letting his hands touch the ground, and then roll him back up

again. I hope I explained these somewhat understandably. It's easy for me, I

can see in my head what we were doing. I can't imagine what images come up in

your head following only my words! )

I hope you get cleared for PT soon. has many adhesions and limited range

of motion that needed very specific and expert help that was beyond just " common

sense " .

best-

yuka

,

Anabelle was born at 26 weeks. She was 1 lb 15 oz. She was diagnosed

with TOF, TEF, Colombomas of both optic nerves, hearing loss and we

are still working on figuring everything else out. She is now 14

months old and 11 lb 3 oz. At first they told us she needed to be 10

lb and they would proceed with the repair, but they keep pushing it.

Then it was 12 to 14 lb. Now they say she may need another shunt and

wait to do the repair. Her cardiologist says her heart is strong but

he is concerned how her lungs will handle the increase blood flow.

She has a shunt put in at 2 months (which closed immediately) and a

stent put in 2 days later. She has gone through 6 surgeries and 11

surgical procedures all in the first 11 months. It's only been the

last 3 months that she has stayed home for any significant amount of

time. She is what you would call medically fragile.

However, she is very active. She moves and plays constantly. I don't

really know about low muscle tone. No one has mentioned anything to

me. I wouldn't be surprised though. She doesn't sit yet but she rolls

to her sides. If she can't reach something with her hands she grabs

it with the feat and brings it to her hands. She can hold her head up

but only for a few seconds at a time (maybe 10)then gets tired and

lays back down. She is starting to become more aware of her

environment. She doesn't have a trach but is on oxygen. She is jtube

fed and meds through the gtube. Also, she has a pulse ox monitoring

her oxygen level. Moving around is a challenge but not impossible.

Anyway, I would love to help her more but I just don't know how. I

really want to get the therapy for her but haven't been able to get

cleared yet. Her first 6 months she has way too many respiratory

issues and has needed intervention several times so I understand, but

she is a different girl now. If I knew exercises to do with her I

could at least do them until they decide to move on. She plays all

the time and I would love to make her play a little more productive.

Thanks for sharing with me and hearing me out. Its great to know

someone else understands.

-

Mother of Anabelle 14 months

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