Friday, June 30, 2006

Wishing you a Wonderful Holiday Weekend!!!

Hi All,

Well the news on the search is they have found 30 matches that meet 5 out of 6 criteria but no 6 out of 6. They also have not gotten the results back from the cord blood bank. It is a decent start.

Dani did really well at her ERT today. Jason met with some of the people that will help Dani while she is getting her transplant. I believe a phychologist, development therapist, and occupational therapist. They will help to make sure Dani keeps developing on schedule while she is in the hospital.

We have a wonderful 4 day weekend ahead and I hope most of you do also. I will try to post some pictures Monday or Tuesday.

I hope to see you all at the July 8th fundraiser. We have plenty of food and drink for all. And some really good entertainment. They said the amphitheatre is beautiful. We are now working on a Bone Marrow Drive and I will keep you posted on those details as they develop. Sometime next week I will have a list of what is going to be raffled. We have quite a bit. If you anyone did not get the personal invite for the Fundraiser email me at and I will send it to you.

Sunday, June 25, 2006

A Day at a Time

Well Friday was pretty uneventful. Miss Dani was sick early on at the ERT. That was the first time she got sick but it didn't seem to effect her too much. I think that might of been the first time she had solids before therapy and maybe it was to much for her stomach to handle. So from now on it will be formula only for breakfast on Fridays.

We talked to the BMT Coordinator to get the schedule and what to expect once she finds a match. There are a few test that she can do now (Hearing, Eyes, and Developmental). Those will be scheduled in the next couple months. She said an average for when the search begins and when a match is found is three months. 30 days before the actual transplant there will be 2 days of non stop test that they have to do to check everything (kind of like a physical). 21 days before transplant she will go into the hospital for 4 days for her first chemo treatment. She will then come hom3 until 8 days pretransplant. They refer to this as -8 days and that is when the hard chemo will begin. She will receive chemo for 6 days and rest for 2 then she will receive her new donor cells. That will be 0 day transplant. She will stay in the hospital hopefully only 6-8 weeks. They will do a check of the donor cells on day 30 to see if everything is going well and then again at 100 days. The next mile stone will be a year post transplant. That is the mile stone I most look forward too. And then birthdays after that.

Please keep prayers going to find a match quickly.

I went around to businesses today to pass out flyers for the July 8th fundraiser. Everyone was really nice and I did not receive a no from anyone. I never thought that I would have to ask other for help as much as I have had to in the last few months. But I will do whatever it takes to make sure Dani and the boys are taken care of . You all do not realize how wonderful you all are for doing all you have done. I am so not good at words but it is a huge relief to know there are so many people out there ready to help when you really need it.

Thursday, June 22, 2006

And the search begins....

We received the call from Children's Hospital today and they now have her typed and will be starting the search for a match tomorrow.... Please pray that it is a speedy search. I am keeping a look out for bone marrow drives in the area and will let you know if I find some. BTW neither Jason or I was a match.

Monday, June 19, 2006

Cute Pics!!!

Just thought I would post some new pics of Miss Dani. Nothing new to report. Saturday was our first wedding anniversary and then Father's Day on Sunday. Hope all the father's had a nice day.

One request to please send the flyer for her fundraiser out to anyone you can. I am going to be going around this weekend to local businesses in Florissant to see if they will post them. Sounds like we have a band for the event and it still sounds like Tony Twist will be there. Can't wait to meet him!! The baskets for the raffle are going to be awesome. We have some really nice items donated.

Again I can not thank everyone enough for their support and well wishes. It amazes me more and more every day how gracious and giving people are.

Wednesday, June 14, 2006

Dani has a Website

I started working on a website last night. The link is to the side under the News Video. This is only the second website I have worked on so don't laugh too much. I wanted a place I could thank individuals and show the flyer for the fundraiser better. Check it out!!!

Dani was observed Monday to see how she was doing developmentally. Overall it went well. They might recommend a physical therapist because she is not rolling over or propping up on her elbows yet. But some of the levels she was at 7 months compared to her six months. We will know more next week when we discuss our course of action.

The fundraiser is coming together. I cannot thank Janet, Laura, and Denise enough for all the hard work they are putting in. I know I have said it before but it is amazing how many people are pulling together to make this happen. It gets bigger every day. The raffle should really be fun, all the stuff that is being donated.

More great news!!! The NATD (National Association of Telecom Dealers) set up a fund for Dani through their charity. That means that if a donation is made to them in Dani's behalf it is tax deductible. Thanks so much to everyone associated with NATD for all the support and help!!! Full details on where to send the check is on her website.

Sunday, June 11, 2006

Quiet Weekend

Hi All,

Hope your weekend was nice. Miss Dani had her 4th ERT on Friday. Daddy said she slept almost the whole time. Jason had blood drawn to see about him being a match for her. She is doing wonderfully and learning more everyday.

Our air conditioner went out for the 2nd time in a month. I guess if its not one thing its another. Hopefully it is finally fixed and we will be cool for the summer.

The final draft on the invite for her fundraiser is done and if you do not get a copy shoot me an email and I will send it to you. They are working so hard to get everything together and the more I hear the better it sounds. Thanks to all of you that have contributed. We will hopefully have the webite up soon and I can thank you all by name.

Tuesday, June 06, 2006

New and Final Location for July 8th Fundraiser *TIME CHANGE*

Amphitheatre at New Town in St. Charles July 8th 5-9 PM
Appearances by Tony Twist and Live Music by Loudmouth Soup!!!

Thanks to many this weekend

Jason and I were so surprised when we received a call this weekend and were told by Jason's Aunt Janet that the golf tournament she had been working on, which was going to the Hessler Foundation, was now going to Dani.

The Hessler's lost their daughter to violence a few years ago and have been fighting to stop violent situations from happening to teenagers since. They have this golf tournament every year to raise funds for the foundation and this year Debbie and Tom decided that Dani needed it more.

It was a wonderful evening of meeting caring and concerned people that wanted to do whatever they could for Dani. We wanted to thank everyone for their generosity and prayers especially the Hessler's.

Monday, June 05, 2006

Prayers & Good Thoughts

Just a step back in reality. As I read more about the families and kids that have Hurler's I realize what a long journey we have. Out of all the journals from families about their journey through this world its amazing all the directions they go. Half have wonderful recoveries and they are doing extremely well and then I read about those that have sent their children on to look over the other children. I was reading a site this evening about a little girl and they have home movies on her site and she looks wonderful and just about Dani's age. She made it a year post transplant and then complications occurred and she is now watching down on all of us. Please keep Dani is your prayers. That is all we ask right now. She has a long journey to overcome. Positive thoughts are key and we normally do pretty well in that department but every once in awhile the insecurities escape.

Saturday, June 03, 2006

Brothers and Sister

Just wanted to post this picture. Dani is getting a little better with her glasses. She trys to look over them, which makes her look like a grandma. Hope all is having a wonderful weekend.

Friday, June 02, 2006

She hates her glasses

Well ... we did not expect the reaction we got. She hates 'em. Here is a couple pictures. I am sure she will get use to them but for right now ... they are not her friend.

ERT 6/2/06

Hi All,

Dani received her 3rd Enzyme Replacement Therapy today. All went pretty smoothly. We were actually done at 2:00pm so that was nice. I had to get blood drawn to see if I am a match for her and that put a damper on getting out of the hospital at a decent time. Dani also gave blood to type her and they told me it would take a couple weeks to hear back from that.

Daddy picked up her glasses today so when we get them on her we will take pictures and post them.

Aunt Sharon was on KMOX last night promoting Miss Dani's Medical Fund and the Fundraiser July 8th. She will be on again tonight if anyone is listening.

Again we can not thank Janet, Darren, Laura, Pat, Denise, Heather, Diane and everyone else for all their help with planning and running the fundraisers for Miss Dani.

The boys are back from their Dad's this weekend. We are very excited to have them home.

I hope you all have a wonderful weekend.