Early Christmas Present

As you can see from the previous post, Grace went to daycare. We got a call last Thursday the 22nd and were told that Grace was one of 50 people approved for funding through Polk County to help out with Day Care for Exceptional Children's cost! This was a huge early Christmas present! When I say huge I mean really really really big and overwhelming. We were told that we would not get funding until 2008 if we were lucky do to some squandering of funds and political bureaucracy, imagine that. Grace will go back for two days this coming week and we will do that for a couple weeks and then see where we will go from there.

Hanging out with Friends

Well, we are all feeling better. Grace made it through her first Christmas. It was actually pretty quiet on Christmas day... we went to the local Chinese buffet for Christmas dinner.... it was packed! Grace fell asleep while we were there so obviously it wasn't too exciting -- but it was nice just to be the three of us. (four counting Hoover--- but he of course didn't go to the restaurant with us).

Grace also made it through her first day of Daycare for Exceptional Children. I was perhaps more overwelmed then she at the prospect of this, but her teachers loved her... and she was kept very busy. We are hoping this will help her sleep tonight, she has been waking up at 4 ready to go.... ugh!

On her report card it says she spent 1/2 hour "hanging out with friends" -- how cool is that she no longer has just us.... she has friends!

Kevin

Grace is still in the hospital, they tried some formula last night and she began throwing up again around 4 am. I got sick last night as I was gathering things to take back to the hospital -- and continue to struggle.

Kevin is holding down the fort for Grace and myself. And he is doing really well at it. Please keep him in your prayers... for strength, patience -- and health!

PS -- If anyone wants to go to Blank and give him an hour off -- I'm sure he'd appreciate it.

the ER

Grace was in the ER again yesterday morning.... she began throwing up late Saturday afternoon and was keeping nothing down. They admitted her to the hospital yesterday afternoon to make sure they could get some fluids in her and so they could give her medications by IV until we figure out what is going on. This is somewhat discouraging.... two ER visits in 8 days... but I'd much prefer she be there, because there is nothing scarier than watching her turn purple trying to vomit..... what a cheerful message for so early in the morning! Anyhow Kevin is with her now and I am rounding up some things to be able to get back to them. Think good thoughts!

Grateful for the little things

It's been such a mixed bag the last few days....

Grace is producing steroids as she should... she is free and so are we,
but --- the thyroid came back abnormal, this is responsible for growth and will require another blood test on Thursday.

A trip to the ER for a "normal" baby problem leads to further tests, there is the possibility that Grace could have "reflux of the kidneys"...

we are stymied by having to make a decision about daycare... it was scary the first time to make a decision, but now I am honestly petrified about where we should put her - how we will pay for "specialized" care - and if anyone but my dad is "good" enough to take care of my baby.

But... we can take her to see Santa --- and she is able to put weight on her feet longer, and Kevin called me this morning all excited because she was giving him little half smiles and making great noises. I wanted to come home. That's enough of a good thing for today---- we can keep going tomorrow.

Out and about

Today we went shopping as a family, it's been a really long time since we have does this. Naturally Grace slept through the entire experience. We were really looking forward to her being awake and taking everything in. But we are all really tired from last night.

ER Sleep Deprivation

We visited Blank ER tonight/this morning. Grace has been vomiting her formula, baby food and medicine. This was sporadic but starting to get more frequent. Tonight she threw up a large amount of formula and all of her meds. We re-dosed one med and within minutes is was back up and she was gagging and grasping for air. We called Dr. Slovan the GI on-call and after discussing the issue he felt that the G-tube may have moved, etc so he wanted us to go in.

They took X-rays but everything looked fine. They ran a but of blood tests, levels on all of her meds and several others. Turned out she has a urinary tract infection. This doesn't have anything really to do with her immune system it is just one of those things and apparently vomiting is something that comes along with it. They gave Grace a shot and a script for an antibiotic. We will see how she does.

Grace had several seizures, two while in the ER, they were harder than normal but she was never able to keep her evening doses of meds down. It will be interested seeing how her seizures react if we can get the vomiting under control and she can keep her meds down again.

Hello World...

We got the result back from the blood tests Grace had on Wednesday. Her body is producing the steroids it should be and her immune system is back to normal! So we can immediately rejoin society and see the world!

We were not expecting the results this quickly but we are not complaining...Grace has been vomiting and the GI doctors wanted to make sure everything was OK with her adrenal levels so they ask Dr. Cook to make the lab run the tests today.

Dr. Cook is our Endocrinologist and she has said that we shouldn't go all crazy as Grace has not been exposed to much so even though her immune system is back she has no tolerance against any sickness, etc.