Sunday, July 30, 2006

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!!!

Saturday, July 22, 2006

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.

Sunday, July 16, 2006

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!!!

Thursday, July 13, 2006

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 , 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.

Tuesday, July 11, 2006

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.

Sunday, July 09, 2006

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.

Tuesday, July 04, 2006

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.