Saturday, April 26, 2008

Celebrate life!

We got to go to Navy Pier tonight for the Celebrate life party at the Children's museum. What a place! The kids had a blast, I was a nervous wreck though. Jason was out of town so I went on my own with the three girls. First of all, I have never driven into the city on my own (I mean into the heart of the city, and Lake shore drive), I can get to Children's with my eyes closed, or drive around that area, even the north side where we used to live. Driving in the city is very intimidating with all the traffic, the one way streets, the people, the angry drivers, the angry cab drivers, they all hated me today because of my driving slowly and not knowing where I was going. Mapquest got me as far as Navy Pier, but I had no idea where to go from there. Somehow I found a parking garage and parked. Then somehow I found out how to get to the museum from inside the garage. This was enough to make me wonder why I bothered in the first place. Once we got there though, we were there. I felt more calm as the night went until it was time to go home and get back into the car, and find my way out. That's a whole other story though. HAHAHAHAHA!!!!!!

It was fun, the girls had a blast. Just a museum full of miracles! We saw lots of new faces, and lots of old faces. We saw Oliver the magician, who is also Anna's make a wish, wish granter. He is great with the kids. Anna warmed up to him right away, she remembered him so that was great. The secretary of state was also there, and some of Anna's doctors and nurses. We ran into a couple of kids that are in the same withdrawal study that Anna is in. One of them has been off for a while and is doing great! No complications at all! I think the other was almost done and is doing great. This gives up so much hope for the future. I am so happy for these kids and their families, and so grateful to the wonderful doctors and nurses for conducting such a study. It's amazing to me that my daughter will be off all meds by Christmas this year, since we were told in the beginning that she would be on medicine for the rest of her life. All these advances in medicine!

Here are some pictures. Enjoy!

Anna with Oliver, her wish granter.

Water fun!

Digging up dinosaur bones!

Wednesday, April 16, 2008

Catching up


Perfectly normal labs!

Did I just dream that this child had a liver transplant?


It's been a couple weeks now since I posted. Not a whole lot has been happening, so that's why I haven't posted. Everyone is doing well. Anna had her labs done yesterday, so I'll hear back results today I hope. Two weeks since her first medicine reduction, and I think she's fine. I am watching her very closely, but it was such a small reduction it's hard to think anything (for example, rejection) would happen. That's why I'm so comfortable with this study, the weaning is done so slowly, and so carefully. I will make sure to keep her prgress updated.

Today I get to take Grandma for her last radiation appointment. This is very exciting for us. We are going out afterwards for lunch, and then this weekend we will be celebrating her birthday! I can't wait to show her what a special lady she is. I'm thinking I'll get her one of those digital picture frames (good thing she doesn't read this). They still use a film camera, and since I have gone digital, I never get copies of pictures. I should, but I don't. And at this point it would be hard, and expensive, to get all the pictures from my computer to paper. So, a digital picture frame would be perfect! And they are mostly pictures she hasn't seen, so that will be even more special. Any other ideas for this special lady would be appreciated!

I have pictures from Alexandria's birthday too. She had a blast. She is such a sweet little girl. She is still thanking us for her birthday party, and it's not like we had a big party. Just us, Grandma and Papa, and our friends Michelle, Ben, Hunter, Maya and Sophie. She still remembers her cake with the strawberry's in the middle, that is what she talks about when someone asks her about her birthday. Silly girl. She got her very special Giselle dress from Enchanted, our new favorite movie, a play guitar that when she opened she said she got her very own Guitar Hero. She's funny. Her big gift this year was her big girl bed. Take a look at her special day.

Monday, April 07, 2008

April is National Donate Life Month

Did you know?

April is National Donate Life Month. Donate Life Illinois is a coalition of statewide donation agencies focused on an 18-month effort to register 3.5 million Illinois residents in the state's new organ/tissue donor registry by the end of April. The effort calls attention to the 4,700 Illinoisans who are waiting for lifesaving transplants. During the month of April, Donate Life Illinois will be traveling throughout the state to their "Drive for 3.5" hosting donor registration drive. It is crucial that Illinois residents understand that you need to RE-REGISTER after Jan. 1, 2006 to join the new registry. Donor families, recipients and advocates are gathering to call on fellow Illinoisans to register as an organ/tissue donor. Donate Life Illinois mascot Morgan D' Organ will join Donate Life Illinois Volunteers at 2 locations in Glen Ellyn. A special guest appearance will be made by Secretary of State Jesse White at 10:00a.m. at the BR Ryall YMCA and the at 10:30a.m. at the Glen Ellyn Public Library.

We went. I was going to post this before the date, which was on the 5th, but I forgot. It was Alexandria's Birthday on Saturday (update on her Birthday celebration and pictures to come) so we were very busy. So sorry to anybody who might still be reading this blog, for the lack of updates and blogging. I am going to catch up on reading blogs I promise.

Anyway, it was fun! People were registering which was exciting. It was great to be there so people could see the miracle of organ donation in Anna, and other recipients there. The girls were a little afraid of Jesse White, but I did get a picture of Mary and Anna with him (Alex wouldn't go anywhere near him). They got a kick out of Morgan D' Organ, who was a giant Liver! So funny to see a giant liver standing outside of the public library! So, good times!

The other people in this picture is a family from Mary's old school in Glen Ellyn. The man standing at the end on the far right side is a kidney recipient. The man standing on the far left holding a little girl is his donor. The recipient is now a volunteer with Donate Life Illinois, and is getting near his 1 year transplant Anniversary. The other girls are his daughters, one of whom Mary was in Girl Scouts with. Very nice family!

Wednesday, April 02, 2008

Day at the Museum!

My good friend Michelle and I decided to take the kids downtown to visit the Field Museum yesterday! It was a great idea since we have nothing else planned for spring break and the weather still isn't very warm. After a bit of a rough start (having to stop on the way there for a potty break for two new potty trained girls, and Alex getting car sick 2 minutes before we arrived, also having to leave the long ticket line for another potty break for the 2 little ones) we had a great time. I don't think I have been to that Museum since grade school for a field trip, so I was excited as well! You will all be proud of me for remembering to bring the camera and taking lots of pictures! Enjoy!

I think our favorite exhibit was the mummy exhibit!

Taking turns lying on an ancient egyptian bed, and trying to pull an ancient row boat.

Another favorite was the Dinosaur exhibate!


And more, just random pictures!