Update/Stanford visit

[Guest guest]

Aug.5th,2006

Getting out of this IL weather was a welcome relief this past week.

I was worried as Lizzy had a mucus plug the day before we left. I

think it was just the heat. Even with air conditioning here was a

little relief to this agonizing IL heat 100 degree weather this past

week. It was not good on me so we all can imagined how it effected

.

Security was high at both Chicago O'Hare and San Francisco airports

so it took a bit of time to get through both but we had always go a

few hours early. We always do a treatment before we leave the

airport.

had a bit of a problems during the wait to take off in

Chicago because the plane was so hot but after bipap and watching

her close she did well respiratory wise . When we landed she had to

have a treatment(neb, chest pt and cough) right away. On the plane

she was a stinker. She was whinnying the whole time and taking a

wooden coffee stirrer and poking the guy in the seat ahead of her.

She is definitely going to be 3!! She did not want bipap on. My

angel was ornery this trip!!

On the way home she slept on my lap with bipap on the entire time.

Care-A-Van(Lucille Packard Service) was right there waiting when we

got out the door in CA. Wow ....talk about service. The people that

donate their time to pick us are so wonderful!! for Housing

just goes above and beyond to help us!! I do not know what we would

do with out there help!! and Beatrice are just so wonderful

helping us with rides also!!

We got to the motel and we were totally exhausted. I had to work on

and give her an extra IPV treatment. She was very raspy

from all the fits she had thrown on the plane by holding her breath.

Actually she had more treatments this visit then ever in CA.

Then a we heard a knock at the door! It was Missy and Ian!! Ian is

such a doll. He is 9 and is a type 2/3. Ian is walking !!! He

calmed down and they played together. We have never met

them before but I have talked to Missy " Via Internet . " It was great

to finally meet them and see and Ian together.

The appointment

saw her nurse and freaked..... her heart rate went high

to 162 and o2 dropped. We worked on her and by the time DR.Wang saw

her she was fine. Heart rate was 112 and o2 100%!! Can you believe

how fast she went back to normal? and her anxiety

issues.... She got upset again during the blood draw but soon as

the lab person put a band aid on Magenta(present from Ian) she

settled down. Geeeesh that scares me every time she gets that upset.

I knew no news people from Fox or Chicago Tribune reporter was

going to be there because Tony had told me the day before we left

they decided not to do the story yet. It was disappointing but....

you know as long as my girl made it there and back safe and sound

that is all that counts. MR Dicks news media relations manager for

Stanford was there taking pictures and hammed it up for

the pictures. He was very nice and excited was doing so

well also.

So, the visit was a success. is 19 pounds 15 1/2 ounces

and has grown again to 35 inches! So she is doing well. She was

upped on her medicine again Everyone says looks so good!!

is still DR.Wang's " Star Patient " for the type 1's. . He

keeps saying she is doing so well!!

I guess we fly to CA until May 2007.Its hard coming up with the

money each time we go but because of the success of the drug and

what it has done for by stopping the progression we find a

way.

just was not herself the whole trip it seemed. She

actually was not feeling good until today. She would drop to 96-97

ox level until today. I have been doing extra treatments on her all

week. Today, she is more herself and ox level is great. She was very

sore in her legs also. Maybe the ride in the car seat so long?We

need the EZ-on Vest which I hope gets approved for travel

I changed her bipap mask again . Green sent me two

Respironics small petite masks!! Yeah!! Thank you !! The gel

mask caused bad eye irritation. woke up several times

during the night crying and wanting the get mask off . She still

will not wear the Nasal Aire mask. 's old Respironics mask

was getting too old and I think leaking air.

We leave we suppose to leave Friday for UW and a visit with DR.

Schroth but they called and want us in a day long muscle clinic on

the 16th instead of This Friday so we will be in Madison,WI 16-

18th . We will be staying at the Mc House in Madison.

Christen was asked what was so special about this trip to Stanford

by a news reporter (the Tribune)and the answer is every trip to CA

is special. is a " Miracle " . We thank God every night she

is in our life.

Understanding this disease is understanding why we say this.

We leave again for Stanford around the middle of Sept.

Jeanna