Glasses

[Guest guest]

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Hi

It's been a rough ride but is keeping her glasses on pretty

well right now. We got a strap that holds them on her head and she

can take them off if she wants to but they stop them from slipping

off. I think that's what bugged her- they were always sliding down.

She has no nose bridge, it seems. The neurologist was a bit concerned

about 's vision and wants her to have another eye dr. visit.

I'm not going to get concerned unless I have a good reason to at this

point. Remember, it was 's first time seeing this doctor so

she had no idea how far she's come.

I was thinking of Grace the other day. We walked from the hotel to

the hospital and then back (2 blocks 1 way) and it was low 80s and

muggy. By the time we got back to the hotel room 's temp was

101.7 and her pulse was in the 170's. We got her cooled down and she

was fine but it pretty much ruined the rest of the day. If we had a

cooling vest then she could have maybe done better. We're having

that problem now that she's moving so much- her fluid needs are

increasing.

How's Gracie doing with fluids? Do you want more bags or were you

able to get your insurance to pay for some?

Take care

Heidi, 's Mom

[Guest guest]

Heidi,

Thanks for asking about the bags. We are doing well on them. I am rinsing them out as you suggested, and they go far. We do not have a prescription for them yet, but insurance will cover them once we do. I need to get Grace into her GI soon so she will write one for me. Grace has all of a sudden become very sensitive with her button. Now she is always messing with it, and cries when I try to use it for anything. It does not look irritated or anything so it is best to just take her in to make sure. I have also given her a break from using it, so I am adding her medicines into her sippy cups. So far she has not figured it out, so it is a temporary fix.

A cooling vest may be a really good thing for . We were able to get MDA to pay the Moody Foundation's out of pocket expense to get Grace hers, taking her off the waiting list. She has not received her custom vest yet, but she has an older type one in the meantime. It gives us much more freedom. We are actually going to go to a parade tomorrow! It will only be about 80 degrees, but now we can go without worry. I would suggest you contact Moody Foundation now, if you want one for next year. They are currently coming into some extra funding, so the wait may not be so bad. Also try the MDA too, they were great in helping pay for Gracies.

Do you take to a pediatric eye doctor? I don't think Grace has any vision problems, but I was wondering if I should get her checked out. Both of her sisters wear glasses, so I must not make kids with good eyes (weird because I have 20/20 vision). I will probably give it another year or so, anyway because we are now dealing with too much.

Well, I gotta go chew some more Tums down. I'm in the final 4-5 week home stretch until baby is born. He is breech so the heartburn is killing me. Talk to you later.