Update on Olivia (long)

[Guest guest]

Hello all,

I haven't posted in a while but I've been keeping up with all of

the posts. My thoughts and prayers are with all of you that are

going through your trials and setbacks right now and my

congratulations are going out to everyone with good news!

Olivia's still doing great in kindergarten. The kids are mostly

leaving her alone on the playground although they all call to her

and say hi, it's rather like being out with a movie star, I'm very

uncomfortable with all of the attention but it doesn't seem to phase

Olivia. Once in a while she say's " Boy I'm popular " or " why does

everyone know my name " but other than that she feels like a normal

kid there (whatever normal is any more! hehe).

The school is still absolutly stellar in their accomodations for

Olivia. The funding has gone through for the bathroom reno's at the

school, they're splitting the countertop with the dual sinks and

dropping one sink so that she doesn't need a stool and they're

installing another paper towel dispenser that is at her height.

Funding has also gone through to have the 2 main water fountains

lowered to her height.

I'm very glad for Olivia's aide and she's such a great person to

boot. They have special permission to stay out on the playground

for a few min. extra when the other kids have gone in. This allows

Olivia to play on the slide, tobaggan hill and some of the climbing

equipment that is just too dangerous when all of the kids are

running around, for a reward on those trying days she's able to pick

a friend to stay out with her.

In the classroom a lot of the day done on the carpet and Olivia's

attention span was horrible, we thought it might be because of her

poor " core stability " (low muscle tone in the core of the body) it

uses a lot of core muscles to sit crosslegged, so they bought her a

little foam chair to sit in when they are on the carpet. Immediatly

they saw a huge change in her parcitipation and attention span with

the support that the the chair offers, much better than the fidgit

cushion. Sherry (Olivia's aide) also made fidgit balls to fit her

small hands that are working well. I will give the instructions to

make them in the next post... I'm sure they will work for many of

our kids!!

Olivia's Pamidronate IV treatment went as well as can be expected

and there were no reactions this time thank goodness, they only

happen for the first dose. We also saw the genetisit while we were

there and have decided not to procede with GHT. Both RSS and

Osteogenesis Imperfecta (Brittle bone disease or OI) have high risk

for curvature of the spine which can be exasserbated by GHT and he

considers Olivia to be at a bit higher risk because of her vertebral

fractures. There is also the concern of making her grow faster and

weakening her already weak bones, so far none of her bones need

rodding (where they insert metal rods in the long bones of the arms

and legs to prevent through and through breaks and to offer

stability) and we want to keep it that way! The good news is that

she comes from a very small family, myself, my birth mother, mother

in law and sister in law are ALL 4' 9 " tall and my hubby is only 5'

4 " so it will be easier to deal with since we've all been there done

that and bought the t-shirt!

Whew! I guess this got a little long! That'll teach me for not

posting regularly! All in all, everything is going really well for

us right now and we're enjoying the " coasting " stage at the moment.

Leah, mom to 9 years and Olivia 4 years (5 next month!)

19lbs, 33 " , RSS, OI, lots of meds.