Sunday, January 27, 2008

Settling In

We are finally getting a little closer to being settled into our new home. The first 2 weeks were pretty rough. We were all so sick we used all of the very little energy we had to do a little unpacking. We spent the rest of our days coughing, wheezing and sleeping. We wanted to see family and friends, but we just couldn't. Once we finally got over the nasty bug we had to start getting back on schedule. Tim had a ton of work to do this past week to get ready for his trip to India. In addition to his work we also had to get as much done around the house as possible since he won't be here for a week. If that wasn't enough to keep us busy we are also getting ramped up with a full month of appointments for Casey.

We had a team of therapists come in last week to evaluate Casey and determine the plan for moving forward. To start with she will have 1 hour with each, speech therapy, occupational therapy, physical therapy, vision therapy, and developmental therapy. PT and VT were twice a week in LA, so it is possible as the therapist get to know Casey here they may increase the frequency again. All of these therapies are at home. We are also trying to set Casey up with Cranio again once a week. Cranio is normally at a clinic. All of these therapies will start up this week. Casey's therapy/play room is coming together just in time.

We have seen Casey's new pediatrician twice. We start in with all of her specialist this week. We have Neuro & GI this week. I think ENT the week after. The week after that we see Pulmonary. Then in March we go to Houston to see her new Ortho. Most of her new specialist work in the Dell Children's Hospital.
While we are at the new hospital meeting all of the new team we need to swing by the NICU & PICU. We are going to try and find a new respit nurse from one of the ICU teams. It is going to be really hard to find a new nurse.

My grandmother's birthday was shortly after we got into town. Due to everyone being sick we had to postpone her birthday party. She (and my grandfather) had not been able to meet Casey yet. Yesterday they came over to the house around noon and finally got to meet the little princess. My mom, her husband-to-be John, and Megan were over at the other house doing a garage sale. They got back around 1:30. We had a nice little party for my grandma. It is really nice to be back where we can see everyone more often. Casey showed up by giving everyone kisses and she even talked a little. She was a really a good girl and had a fun time. I think my grandparents were pretty happy to finally meet her.

Tim had to miss the party. His cab came to take him to the airport about 30 minutes before my grandparents came. He is still traveling now. He left here around 11:30 Saturday and will probably get to his hotel in India around 3:PM today. He will get back on Friday. Casey is already missing him a lot. Last night she kept rolling over to his spot in the bed. She would look for him for a little while then come back to my and bury her face in arm and go back to sleep. She must have woken up looking for her daddy at least half a dozen times. It was really sweet, and heart breaking all at the same time. When he is in the bed she never rolls over like that, so I positive she was looking for her dad. I would guess he is missing her just as much. Of course I miss him too, but that's a little different. She is going to go crazy when he gets home on Friday.

We have a busy week, if I get a chance I will post after we meet the new doctors. If not I will post after Tim gets back with doctors updates as well as updates about his trip.

Thursday, January 17, 2008

Happenings

We are starting to get settled in our new place. The past few weeks have been pretty crazy. Casey enjoyed her cousins and aunt and uncle visit. I don't have any pictures to post, but I asked her aunt to send me some and I will post when I get them. Casey took them to her favorite park to show them the ducks. We all went to eat on the pier. Casey seemed to really enjoy having them around.


We finished up all of Casey's last therapy appointment the last week in Santa Monica. It was really sad. We are happy to be in Austin, but we are going to really miss the people that have become such a huge part of Casey's life. We are going to have to be sure to visit them all during our yearly trip back to California for stem cells.


Casey did really well on the trip. We made it to Austin by Monday afternoon. We expected the trip to take much longer, but she did better than we ever expected. Sunday was a really long day. About 45 minutes before we were able to stop Casey let us know she was done being in the car. We all were by this point, so I can't say I blame her for getting fussy. Other than that, she was a little angel the entire time.


Monday night I stayed with Casey at the house while everyone else went to get Megan's stuff. While they were out Casey spiked a pretty high fever (103). Over the next couple of days we had to keep her pretty drugged up to fight off more fevers. We took her to see her new pediatrician on Thursday morning. He was really concerned about her fever, and they did all kinds of tests. After blood work, x-rays, and all that good stuff they determined that Casey had pneumonia. We were able to convince them that she would be better at home with medication than at a hospital. We agreed to take her in if anything became worse. We brought her home and she has been taking pretty strong antibiotics since. She seems to be feeling a little better. We plan to let her continue to rest/recover while she finishes up her meds. We take her back for a follow up next week.

Over the next many weeks Casey will be meeting all of her new doctors. I am very hopeful that they will all be really good with her. We worked really hard to get referrals and researched all of the new team. We have an appointment at the house next week to meet the new team of therapists as well.


We have a few more busy weeks ahead. Tim has to go to India for the last week in January. Hopefully we can find some time to get a little more settled before he has to leave. We really like the new house. It is really nice to be back in Austin and near family and friends. I am sure once we meet all of the new doctors and therapists we will be able to start getting back on schedule.

I hope we get a chance to see everyone in Texas soon. It's good to be back :)

Monday, January 07, 2008

We are in Austin!

And even 1 day ahead of schedule, thanks to how awesome Casey did on
the trip, we are at the house and starting to unpack!

For any of you locals give us a call - we can work out a beer for work
program tonight ;-)

Tim
===

300 miles to Austin

We left Fort Stockton this morning and are about 300 miles outside of
Austin right now. We should be arriving early this afternoon. Ken and
I are a couple hours ahead of Marty, Casey, and Megan, so we should be
able to unload the important stuff by the time they arrive.

Tim
===

Sunday, January 06, 2008

We are in Texas

New Mexico

We are in New Mexico and are making great time... More to come later.

Good night in Phoenix


Casey had a good night in Phoenix and slept really well. We got some rest also here at the Courtyard, and are getting ready to head out. The goal is to make it to El Paso by tonight.

Saturday, January 05, 2008

Goodbye California, hello Arizona

> We are in Phoenix, Arizona for the night - heading to El Paso tomorrow...

We have left LA, we will update our progress through the next few days

Friday, January 04, 2008

Moving Day

WOW!!! We are moving tomorrow. We have been packing/planning for months and the big day is finally here. The apartment is chaos. We have sadly been finishing up all of Casey's therapies this week. I am really going to miss the team of people that help make such a huge impact with Casey. We had one last date this week so Casey could see her nurse one last time as well. I will post more after we get to Austin. For anyone in California that we did not get a chance to see one last time, I am so sorry. We will be back at least once a year for stem cells. Hopefully when we are back next year we can see everyone.