Monday, September 25, 2006

I forgot to download my new pictures so I will do that later this week. The Bone Marrow Drive was disappointing. We had eight donors. I know that it is eight more than we had before it but I was expecting more. The cost really seems to put people off. I want to thank everyone that came out to help with the drive. Jason's Mom, My Mom, Jackie, Vicki, Sandy, Laura, Chris, and most of all Rick from NMDP for being so nice about the lack of donors. And of course our eight donors.

Anyway .... Dani is pulling up!!! She is getting so big and was such a ham yesterday. Gabe and Ethan were grounded this weekend from the game and tv so they spent a lot of time with her. She loves her big brothers!!!

I can not believe how the weather has changed... I was actually thinking about decorating for Halloween this weekend. I got quite a bit of cleaning done. I figure a little every weekend and I might be in pretty good shape by the time we have to go to the hospital. Nothing like Spring cleaning in the Fall! We are getting the ducts cleaned Wednesday and Jason's Uncle Ed is coming that afternoon to help us with a few plumbing issues.

That is all I can think of for now. Hope you have a wonderful week.

Saturday, September 23, 2006


It has been slow so far... The first 20 are free ... please come down!!!! Give a precious gift and save a life!!!!

Thursday, September 21, 2006

Just wanted to remind everyone about the Bone Marrow Drive Saturday from 10 - 4 at the James Eagan Center in Florissant. Please consider becoming a donor if you have not already. You are saving a life!!!!

The family is doing well. Jason and I are trying to get everything set before going into the hospital. I have a feeling we wont have time for anything once October pulls around. I want to get a family photo in so maybe I will work on that this weekend. Hope you all have a nice weekend and hope to see some of you at the Drive!!!

Friday, September 15, 2006

New Info

Ok ... Here is what we found out today

Oct 10th - Miss Dani will be tested for Kidney Function and full X-Rays. It will take about 5 hours.

Oct 13th - (This is the scary one) She will be put under and they will draw Bone Marrow and do a biopsy. Also they will do an echo and EKG to check her heart. We will also be told what we can and can not do when we are in for the transplant.

They are predicting for now she will have her campath (like chemo) sometime between the last two weeks of October. They went over the dos and donts today for our stay and the complications. I dont know why (because I have been studying this for awhile now) but it kind of caught me off guard today. To actually think of Dani going through this. I guess as the time draws nearer ....

For all of you locals do not forget the Bone Marrow Drive Sept 23rd at the James Eagen Center in Florissant from 10 am to 4 pm. There is a charge of $25 for the first 100 and $55 for everyone else. It is your chance to save a life ..... please consider being a Bone Marrow Donor!!!!!

Monday, September 11, 2006

Donor Activated


We just got the call from Children's and they have activated the donor. So we will have more information in a week or so. Still looking at the first round of chemo mid to late Oct and the transplant beginning of Nov.

In other news...

Dani is doing wonderfully. She loves to watch her brothers. She thinks they are soooo silly. Her hearing test went well. She went to the peditrician for her 9 month check up and that went well also. Dr. Kruesser is still concerned with her tightness in her hips and was to pursue physical therapy. I talked to our helper (Amy) at Children's and she said she will get physical therapy everyday while she is in and we can start something ahead of time if we want. She did not have to get any shots this go around because of the transplant wiping out her immune systems.

I can not think of anything more to update so hope you all have a wonderful week.

Saturday, September 02, 2006

Her first Popsicle

Hi All,

First I guess there was no new developments on which 5 out of 6 donor they will take. They are still waiting on the lab to give them more data. Hopefully early next week we will hear something.

Dani went to a developmental therapist at Children's as part of the Transplant process. They put her at low average. Which to us is wonderful considering her bad eyesight and having Hurler's. They will help us while she is in the hospital to keep her as much on target as we can.

She just learned Patty Cake this week and it is soooo fun. She also is getting way too good at crawling. She ventures all over now. We are working on Itsy Bitsy Spider now and Bye Bye.

She will be having a hearing test this week. I do not anticipate any issues there but will let you know what we learn.

We have now decided that I will take leave from work during the transplant to be with Dani the majority of time. Jason will be available evenings and weekends so that I can have time with the boys and myself. It will be hard without having two incomes coming in for awhile, especially with the holidays approaching, but the fundraisers that our families did for us will help. We have a lot of family supports so I know things will go pretty smooth with any additional help needed.

I hope all have a wonderful Labor Day weekend.