Sunday, May 15 is MPS Awareness Day




Sunday, May 15 is International MPS Awareness Day. The mucopolysaccharidoses are terminal diseases for which there are no cures. Please wear purple tomorrow to help raise awareness and to honor Ethan and all of the others who have fought and continue to fight these terrible diseases. Please consider supporting essential research for a cure by donating to the National MPS Society at www.mpssociety.org. Thank you very much.

Ethan is continuing to do very well. His blood counts are holding strong. He's making enough red blood cells and platelets that he hasn't needed recent infusions of either.




He's vomiting once or twice a day right now. That's unfortunate and a drag for everyone, but pretty much expected. He's still on IV nutrition and he's not eating much. His stomach is naturally pretty fragile right now, and the only thing in there is stomach acid, then we're throwing in tons of oral meds that cause nausea. It's understandable that there's a whole lot of puking going on. We're slowly reducing the calories in the IV, hopefully that will make him hungry and help him to want to eat.

Ethan had a sedated CT on Friday to check his granuloma. They look good. The docs have been keeping him on a stronger IV anti-fungal because he's still immune compromised. I think they may move him down to an oral med next week if his blood counts continue their steady improvement.




The day after he came home from the hospital, Ethan developed a bad limp. He doesn't let it slow him down, he can walk on it. But it is causing him some pain, so we've started giving him regular small doses of oxycodone to help with the pain. He had x-rays last week and everything was okay. He's got a sedated MRI scheduled Tuesday and we're working on an appointment with orthopedics. Hopefully between the two we can figure out what's going on.

In other news, Ethan's been having a real hard time sleeping. Ethan's had


chronic sleep issues since he was a few months old. They've been worse since we got here in January, and worse still since he was discharged. We've started him on melatonin which many MPS kids and post transplant kids use. That is helping some, but it's not a panacea. His sleep issues are complicated by the possible pain issues from his leg or continued irritation/pain in his mouth, stomach and GI tract and nausea from the Meds. In addition, I think the neurological changes from the Hurler's affect his sleep. We're meeting neurology on Monday to explore that last possibility.

In Caleb news, he's been really happy to have us home. He's been hanging out with us a lot rather than going down and playing with his friends. We've all enjoyed spending time together again.

On Friday, all the kids in the charter school here got a special tour of the Minneapolis/St. Paul airport. (The charter school just received a naming gift from Southwest Airlines. (Thanks, Southwest!!)) So, the kids got to go behind the scenes. We sent Caleb with our camera and he took more than 80 pictures. Almost all of them are pictures of the airport fire station. The kids also went up into the control tower, but Caleb says that he forgot to take pictures up there because he got distracted by looking through the binoculars.

If you want to see the pictures of the tires and wheels on the airport fire trucks, just let me know and I'll email some to you. For the rest of you, here is a picture of Caleb driving the fire truck.




So, day by day we move forward in small steps. Adjusting meds and timing to try to reduce the vomiting and interest Ethan in food, working to get him to sleep through the night, pondering what new issue might lie behind his limp...we live MPS every day. We know that those of you who travel this road with us also think about MPS often. Tomorrow is National MPS Awareness Day...perhaps as we go through our day tomorrow, we can bring a little knowledge of MPS to each person we meet. The more people know, the more support we can get for research to find treatments and maybe someday cures for these diseases.

Comments

Erica J. Thiel said…
Todd, since he is taking cortisol replacement (I believe?) thus will naturally mean he has problems with the sleep/day time schedule as normal cortisol is reduced at night and highest in the morning but in those of us deficient in cortisol the opposite happens - ie we feel more tired in the morning (doesnt mean you can get up just not the same pep) and more awake at night meaning screwed up sleep. Add in the other MPS factors and it's naturally a problem.. Have the drs also kept an eye out for high intracranial pressure as that is worse at night and with laying down... Hope it gets straigtened out!

Erica
www.rarelydefined.blogspot.com
Anonymous said…
Purple all day tomorrow for Ethan and others. Your family is just so darn awesome! So glad to see him smiling (between the vomiting even!!)
Theo
Jenna said…
Hi Ethan!
My name is Jenna and I came across your site. U are a courageous, determined and strong, Fighter! U are a brave Warrior, smilen Champ, and an Inspirational Hero.
I will pray for the pain to get better. I don't like seeing kids or other people suffer in pain, even though I have never had a pain free day in my life.
I have a rare life threatening disease.
www.miraclechamp.webs.com