Eddie Kimminau's Journal
Written Nov 24, 2013 5:36pmIn my last update I noted that Eddie would be on the radio on Monday the 26th. Well that is not an actual day this year:) He will be on the radio on Tuesday the 26th between 6am and 7am. Sorry about the mix up. I haven't had much sleep:) I can't wait to see what he is going to say. He has had practice with Bob Uecker and Joe Block and we know he is not shy. I will have to make sure I keep his pain meds to a minimum that morning:)
Eddie's rash has gotten much better and he is in better spirits. He is walking much more. It is great to finally see improvements and healing. He still has times of great pain and itching but it is lessening each day.
At his infusion on Friday he had a mild reaction-hives and nausea. This is something we were worried about. Every time he misses an infusion he seems to have a reaction. After looking back at previous times it usually takes a few weeks for him to have a more serious reactions so we hope this Friday goes smoothly.
Eddie cannot wait to go back to school. He misses his friends and the community so much! At least we won't have to fight with him about that:) I am hoping that after Thanksgiving he can start going at least half days. He doesn't want to go tomorrow because he would have to listen to Mr. Waller talk about how his Vikings tied the Packers.
Team Eddie - I don't know if you have heard but Team Eddie has made it to Thailand. Ms. Marx (Eddie's kindergarten and 1st grade teacher) has a T-shirt and took a picture next to a banana tree. We also have a famous team member - Santana Dotson, a former Green Bay Packer has joined the team.
Again thanks for checking in and keep the prayer coming Eddie's way.
Written Nov 21, 2013 7:14pmHi Everyone,
Lots of news.
Team Eddie had a great turn out last Saturday. It was Eddie's first(and only) outing since we've been home. It really lifted Eddie's spirits to see so many familiar faces, some racing sausages and a visit from the firetruck:). The Mukwonago football team gave Eddie a signed football and so many members of the team came out to support Eddie. Even Coach Iverson came to see Eddie. Thanks to all of you that set this up and continue to give us so much support. What a wonderful community we have moved into.Eddie is going to be on the radio. He will be on the Make-A-Wish Radio-a-thon. He is scheduled to be interviewed on Monday 11/26 between 6-7am. It will be on 95.7 in Milwaukee but will also be on Iheart radio if you are not in the area. Eddie has already been on this radio-a-thon a couple years ago before he got his wish granted. This time they want to talk to Eddie on how he is paying it forward. Recently Eddie became a student council representative. When it came time to decide which charity the student council wanted to raise money for Eddie felt strongly that it should be Make-A-Wish. He made a great Animoto about it and prepared a speech. There were 3 other wonderful charities that the student council had to consider but when it came time to vote, Make-A-Wish won. Eddie was so excited. So this spring student council will be having a fundraiser for Make-A-Wish.This week there was very exciting and historic happening in the Morquio community. The FDA Advisory Committee met in Washington, DC to consider approving Vimizim (elosulfase alfa), the enzyme replacement therapy (ERT) for MPS IVA (Morquio syndrome). And they voted YES! The is the infusion Eddie has been getting weekly for the last 2 years, 3 months.Now the ball is in the FDA’s court to make the final decision, expected by February 28, 2014. Many of our Morquio friends went to Washington to tell of their experiences with the ERT and how beneficial it has been. I still remember when Eddie was first diagnosed and we were told that there was no treatment or cure and that we would just have to watch our babies body progressively be destroyed. That is why Eddie was #5 in the world to start the clinical trial. This is beyond exciting and brings a tear to my eye to think that now when a baby is diagnosed they will be able to tell parents that there is treatment and that their lives and the progression will be slowed. It is wonderful to be a part of that. Thank you to the MPS society for all their hard work on this. Here is a linkhttp://www.streetinsider.com/Corporate+News/BioMarin+Pharma+%28BMRN%29+Receives+FDA+Committee+Approval+of+Vimizim+as+MPS+IVA+Treatment/8906237.html
Eddie has had some setbacks. He has some kind of allergic reaction around his incision sites. So along with pain he also has terrible itching. It was awful this weekend, he was miserable. Monday we went to the doctor. He is now on antibiotics, zyrtec and anti itch cream on top of all his pain meds. Today was the first day we saw some big improvements. He is taking some steps and sitting up more but his progress has really been delayed with this. I hate seeing him in so much pain. I know it will get better but it is hard to wait. Thanks to the family that is there to lighten our loads. We couldn't do it with out you.Thanks for all you continued support thoughts and prayers. Eddie still has a long road ahead of him to completely heal. Keep the prayers coming.
Written Nov 16, 2013 10:31amHi All,
We are home and together again. Having Makena back in my arms couldn't have been sweeter. We picked her up early from school on our way home. It was a "Team Eddie" day at school so everyone was wearing there shirts. Many teachers ran out to see Eddie in the truck. It was so wonderful.
Eddie has been improving little by little. There is still a lot of pain. He took 10 steps today. It was under great protest and screaming but he did it. It was nice to be home in our own bed, have family and friends around.
Today there will be a "TEAM EDDIE" event at the Mukwonago Pick N Save. It will be from 10-3. There will be brats and hot dogs for sale. They will also be selling the Team Eddie shirts for $10 and bracelets for $5. The Brewer's Racing Sausages will be making an appearance.Another wonderful event put on by Patti Menden and Nikki Zimmerman. Thank You!
Eddie and family will be there at 11:30. We are not sure how long he will make it but we will stay for a while.
Thanks for all your support and checking in on us during this time.