Baby care while waiting

[Guest guest]

Hi folks,

Thanks again - I got great info from my last post. We went to Boston Children's

and were told that Lucy's RVAD was 6 (they didn't measure rotation or cobb) and

to come back in 4.5 mos. We're still very anxious about the size of the rib

hump (seems hard to believe that it will rectify) and worried about the accuracy

of the xray measurements on a supine 5.5 mos old, but I think the outcome would

be to wait and see anyways. We decided that if casting is needed we want it

done at Rochester (we have family there), so we have an appointment there in

early March. Hopefully that's enough time (and not too much) to see what

direction we're going in.

Is there anything we should be doing at home in the meantime? (are there any

sources of info for this?)

1) Sleeping position: she currently sleeps on her tummy (i know, what are we

thinking - but reflux has been a big problem for us). We're going to train her

to sleep on her back this w/e (she literally cant sleep for more than 10mins on

her back). I'm hoping this will help to flatten the hump (is this ridiculous?)

2) Massages: I've been giving her rib hump a massages after she falls asleep -

to flatten it and to push the curve back - is this ridiculous also?

3) Physical Therapy: I've read here that some folks do PT on their babies - what

type of exercises? We've increased tummy time significantly. Should we

practice sitting to strengthen her core even though she still slumps forward and

to the side (she hates this)?

4) What should we avoid/use: Avoid Bumboo baby and car seat? We have been

carrying her a lot in the BabyBjorn Baby r (outwards) and trying to

increase her Jumperoo time. How about her stroller?

I feel like I'm making these care actions up since I haven't found any

literature on this. Hopefully this topic is helpful to others who are waiting

also.

Thanks again everyone.

(Lucy's dad)

----------------

> Original Message:

>

> Hi Everyone,

> I'm grateful to find you and thanks for having me. There's so much good

> information here which I'm still working through.

>

> My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew

> something was wrong by the hump on the upper right of her back, but we're

> still in shock and so scared. The radiologist called it a mild curve with

> no bone abnormalities. The curve seems to extend from the top to bottom

> of her spine. We live in Boston and are heading to Children's Hospital

> next week for a consultation so I will get more info then.

>

> We have family in Rochester NY so are also considering scheduling an appt

> at Strong Hospital since they seem highly regarded and experienced in the

> Mehta process. Does anyone have any experience with either Hospital? I

> believe Boston Children's does practice Mehta but I will confirm.

>

> Lucy has no other health issues that we know of. She is a long thin baby,

> so we're worried about progression (I know it has progressed in the past

> month by looking at her). We're also worried that she has an upper right

> thoracic curve which has a 'worse' prognosis for females per the text

> books.

>

> I assume the outcome of our Tuesday appointment at Boston Children's is

> going to be to wait and watch. How long should we wait?

>

> Again, thank you all.

>

> (Lucy's dad)