1st Tooth and Crawling

Well we had the pleasure of our first bout with teething this weekend. Miss Dani was in a fine mood with her first tooth breaking through. She is also mobile. She has the army crawl down perfectly now. She even managed to gain her first crawling injury (just a small red spot below the eye).

There was nothing new on the search. I will post as soon as I get some new information on that. If I did not mention it before they are now looking internationally also.

We have appointments set up in August and September for pretransplant testing. The August appointment is her developmental test and the September will be for her hearing. She also has a cardiologist appointment in a couple weeks.

I can not believe it is time for school to start again. I have all the boy's supplies bought and will need to go through their clothes soon. They wear uniforms so that is pretty easy.

Keep in mind the August fundraiser is coming up on the 11th. Email me if you need tickets. I hope everyone keeps cool!!!

Quick Update

Hi All,

Nothing really new to report on finding a match. I have not received any updates from the hospital. Dani did really well yesterday during her ERT. We had a pretty good storm blow through when we were there but it did not interrupt her infusion.

We have had no electric for 3 days now. Ice seems to be a high commidity. There is no end in site according to the AmerenUE map. The numbers in Florissant keep going up and not down. grrrrrrrrrrrrrrrrr . At least the weather cooled down.

Hope you all are comfortable and enjoying the weekend. I need to update about the August fundraiser and will soon. Looks like we will do prepaid tickets because we have limited indoor space. If you would like a ticket send me an email at the link to the right.

Oh... they just called yesterday and her glasses are ready. We will be picking them up Monday. They had to redo them two times so that is what took so long. The picture above is just a cute one of Dani sleeping on her Dad. Talk to you all soon I hope.

Weekend Update

Well, It was quite a warm one this weekend. Our airconditioning had a hard time keeping up. I hope all kept as cool as they could.

Friday Miss Dani decided that she was going to keep Daddy busy at her ERT. She was not the happiest but they made it through. Her site for her C-Line is swollen and the doctors checked her out. There is no sign of infection but they are going to have the home nurse check it Monday to make sure it still looks okay. She is now rolling all ways and Daddy and I think she is irritating the site with her movements. So we are going to have to do a better job of protecting it.

Jason talked to the Yvonne (Nurse Practioner) and I talked to Amy (Bone Marrow Coordinator) on Friday. They said they are requesting samples of 6 (5 out of 6) adult bone marrow matches to do further testing. They also said they found some 4 out of 6 matches from the cord blood bank. One in paticular has a high cell count and they are going to do further test on that. They said it would be a couple more weeks before we know more.

Her glasses are still not ready. Hopefully we will be able to pick them up Monday.

Please say a prayer for Syndey VanHook. She just got to go home on Friday to Bloomington Illinois from Kansas City MO after completing her 100 days post transplant. This weekend she ended up in St. Jude's with a fever. I will post her website below.

We are having another fundraiser August 11th. I will post the information on Dani's Website. This will be an indoor event and as things progress I will update here.

Also do not forget the bone marrow drive this Wednesday. The information is posted on the entry below this. Hope you all have a safe and cool week!!!

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=sydneyvanhook

New Local Bone Marrow Drive

There is a Bone Marrow Registry Drive next Wednesday the 19th of July from 4:00 PM to 8:00 PM at:

Trigg Banquet Center, 300 O’Fallon Plaza, O’Fallon, MO 63366-2654 Phone: (636) 240-3288

Take Hwy 70 to the O’Fallon Exit. Exit the highway and go toward Old Town O’Fallon (Hwy M/Main Street). Go a couple of blocks and turn right on O’Fallon Plaza. Trigg Banquet Center is at the end of the plaza on the right.

Samples taken via mouth swab (no needle stick). $25 charge for the first 100 people and $50 thereafter.

This marrow drive is being held for:
Jessica Inchiostro who has leukemia. Visit Jessica’s journal at www.caringbridge.org , go to Visit a Caring Bridge Site and enter her name without a space for the Site Name.

If you have questions, here are some contacts:

Cyndi Aufner 636-397-6330 (h)
636-262-1572 (c)

Marilyn Ferber 636-928-5295 (h)
314-591-4279 (c)

Thank you for the heads-up on this one, Barb Dothage.

Pics to go with the Eye Exam Post

I guess the pictures are too big and did not want to go with the post. So I made them separate. The first one is after the exam and the second one is before... go figure.

Eye Exam and Update on Search

Dani did very well today. We got up at 4:30 this morning to chug Apple Juice before the cut off of 5:00. She had to be at the hospital by 6:30. When we got there we answered the usual questions from all the doctors and nurses. You would think they have that information in her chart but maybe they are just making sure nothing is missing.

She was only gone for 30 minutes. They used the restaurant style beeper to let us know she was in recovery and we could come back. I went back and Jason stayed with the stroller. When I got back there I heard her and another little boy loud and clear. Never of them were very happy. The nurse was trying to give her Pedialyte which she had never had and was not willing to try. I took her and the nurse offered us apple juice instead. Now we are talking.

I am not sure what the little boy had done but they had used his hand that he normally sucks his thumb on for the IV and he could not get it in his mouth. BIG MISTAKE!!! He was not a happy camper.

Dani took a little apple juice but still was not very happy. We will blame it on lack of sleep, hungry, anesthesia, and dilated eyes. I can not say I blame her. They made us stay in recovery about 10 minutes and then off to get Daddy and back to Same Day Surgery. Once we got there it was formula time. So much better!!!! Dani took her medicine (for her heart) and drank quite a bit and then finally fell asleep.

While she was sleeping the opthomologist (Dr. Tyschen) came in. Dani has severe nearsightedness. Her prescription is -17 in one eye and -14 in the other. To put that in perspective I am a -9.5 and without contact can not see anything. Her first prescription was -2.5 ... how wrong is that? We mentioned having a hard time being able to keep her glasses on her. As soon as you get them on, even with a sport band, she pulls them down to her mouth to suck on. He said that was common but could be an issue with development so if it continued to be a concern we would have to look at corrective surgery. She also has minimal corneal clouding which is not a problem currently but something to keep an eye on.

We were able to take her glasses back and get new lenses ordered so that she will have her glasses Thursday. And then the battle begin to keep them on. Wish us luck ... lol

Ok .. update on finding a match. We still have not heard anything back about cord blood matches. They are requesting samples of some of the 5 out of 6 matches from the unrelated adult bone marrow. Jason and I are not to enthused with that move but we are waiting to see what happens.

Also we choose a development therapist thru the First Steps program to come out monthly and check out how Dani is doing. Those visit will either start this month or in August.

What a Wonderful Day

Oh my gosh. Yesterday was like a dream. It was amazing. We are so thankful for everyone that came out for Dani's fundraiser. Janet, Laura, and Denise did such an awesome job with everything. It could not have been better. The weather was so nice and there was so many people their wanting to show their support for Dani. Loudmouth Soup was awesome!!! The raffle baskets were beautiful. The kids tent was a huge success. I heard all sorts of compliments on the food. New Town is really neat. We had not been there before but if you havent seen it check it out. Everyone was so friendly there and the amphitheatre was really nice.

I can not thank enough everyone that contributed to the event. I do not want to start listing names because there are so many but I will hopefully have something put together soon to show our thanks.

I am hoping to find out an update tomorrow about Dani's matches and will post when I know more. Dani is going in for a thorough eye exam on Tuesday. They will be putting her under for that and I will let you know when we find something further out on that also. Hope you all have a wonderful week and I will hopefully be updating more regularly now that work is settling down and the fundraiser is over. Just a note and I will post more on this later. There is going to be another fundriaser August 11th. When I get the flyer I will let you know.

Local Bone Marrow Drive

Hey all,

I have had a lot of people asking and I am going to try to get one going but here is a bone marrow drive that is going on this Friday.

The Julie Devlin marrow donor drive is this Friday, July 7th in South County.
Julie Devlin Marrow Donor Drive
Date: Friday, July 7, 2006
Time: 5-8 p.m. (Drinks and snacks provided)
Location: Carrollwood Condominium Clubhouse
10761 Carrollwood Way
St. Louis, MO 63128
Cotton Swab Sample
$25.00 charge

I saw this on one of the local news websites.

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 rdhdtrue@yahoo.com and I will send it to you.

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.

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.

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.

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.

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.

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.

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.

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.

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.