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Saturday, February 11, 2012

Jack's art party

Last night I went to an art party at  my incredibly talented cousin Melissa Fischer's house. The party was held as a fundraiser for the UMDF. Participants paid a fee to make a craft. After the cost of the supplies were covered the profit is donated to the UMDF. Last night we made a "love bug" for Valentine's Day. We had red velvet cupcakes with cream cheese frosting. They were absolutely the most delicious cupcakes I've ever had! We also had banana punch made by her sister-in-law Ashley. It was soooo very good! It was  a fun night crafting and snacking! We are thinking of doing it again around Easter time. You guys should watch for an invite soon!

Jack has still been fighting bronchitis. We have increased his vest treatments from 2 times a day to 4 or more a day. He is on his third antibiotic. He is still smiling through it. I hope we can get him clear soon.

We are looking forward to the Mito What? 5k coming in March. It is being held 8 AM March 24, 2012.  It will be Jackson's 5th birthday!!! The race will begin and end at the U.S.A. baseball stadium in Millington, Tn. You can register for the race on line at You don't have to be a runner to get a shirt!!!! There are different levels of participation. I know some of you live out of town and won't be able to attend but you can still register and get a shirt. If you can come and you don't want to run or walk just register for
 a shirt come and cheer the runners in. It means so much to me and the other mito families to have your support. Our kids don't have a cure but your participation in fundraising events give us hope that one day a a cure or a treatment will be available one day.

Wednesday, February 1, 2012

Jackson's Houston Adventure

Last week was Jackson's yearly tripto Houston, TX to see all his mito doctors. I told him he was going to see his #1 girlfriend, Dr. Koenig. He smiled when I told him that he was seeing a girlfriend. He is such a ladies man sometimes. Mom, me, and Jackson got on an airplane Monday afternoon. I was nervous about Jack being around all those germs. We may drive next time but Jack has a hard time riding in the car for over 10 hours. It's hard making those travel decisons.

So what did we learn about Jack.....
Dr. Koenig said that Jackson looks good overall. He is growing. he wiegh's 47lbs. and is 44in. long. Jackson has been fighing bronchitis and has been having lots of jerks lately. I asked her what to do about the increase in the frequency, strength and duration of the myoclonic jerks that I have been noticing in  Jackson having for the past month or more. There is nothing we can do for him. Jackson is taking the max on all his seizure drugs. I can't imagine what things would be like for Jackson if he took nothing for the myoclonic jerks/seizures. At least while he is on the meds it controls them enough where he can participate in his life and make progress developmentally. She added a new vitamin to our mito cocktail. It is called B6. She also doubled his Co-Q-10. Jackson is still on the list to be recruited for the EPI 743 study. It is a study of a new drug called EPI 743. It is similar to Co-Q-10. Doctors that are studying this new drug have seen great results for Leigh's patients. I am excited to find out for about this opportunity for Jack.  The doctors are not recruiting patients at this time so Jack is on a waiting list.  /Dr. K wanted to see him again in 6months. If we lived in Houston she said she would see him every month. Everytime we go to Houston it reminds me of just how fragile Jack's health really is. At home Jack's needs have just become normal to us. Sometimes I forget just how precarious, different, difficult, Jack's life is . He is just my baby.

Later that same day we saw the GI doc. His name is Dr. Rhoades. He also thought Jack looked good. He said Jack obviously doesn't have any trouble getting nourishment. LOL Jackson just has trouble emptying his stomach and his bowels. He increased Jack's Reglan to help with gastric emptying. He suggested dulcolax to help Jackson have a BM. We have been using Fleets but have not having the usual results. We'll see how it works. I think I may try to get a GI here to start to monitor Jack. They may could jsut do the same thing Rhoades did. It would shorten our Houston trip and I am in favor of that. It really didnt offer  anything else to Jack's overall plan of care.

On Wed we saw the cardiologist Dr. Moulik. I really like her because when I first met her she started out her first sentence with.."In my other Leigh's patients I see...." I thought wow she sees other Leigh's kids this is great! She ordered a 24 hr halter, ekg, and echocardiogram. I don't have the resuts of the 24hr halter yet. The EKG and echo showed everything with the structure of his heart and rhythm of Jack's heart to be normal at that time. Jack does have WPW (Wolfe Parkinson White). Which means Jack's heart gets mixed up signals smometimes. Dr. Moulik thought Jack's WPW was not life threatening and has decided that it does not need any treatment at this time. Jackson's heart rate has been dropping occasionally in the night while he has been sleeping. She and Dr.K felt like this is related to the lesions on Jackson's brain stem and there's not anything we can do for it. When he sleeps Jackson is on his monitor.

Later that day we saw Dr. Paechco. She is Jack's imune specialist. She is keeping Jack on Zyrtec for allergies. I asked her about what to do when it is so hard to get an iv in Jack when he is sick. I asked about a central line/PIC line etc for Jack. I don't think we need one now because we are not in the hospital on average 3 to 4 times a year. If we were in the hospital more it would be considered. I am against one for now because the risk of having a life threating infection is WAY to high. She said for now when Jack is sick give more fluids. But how much how oftern...She was going to talk to Dr. K about it and get back with me. I think I will consult the Gtube clinic people that monitor Jackson's nutition about it at our next visit.

Finaly we saw Dr. Smith, the pulmonologist. She is concerned about Jackson dropping his SATS at night. She said it is related to the disease and the lesions on Jack's brain stem. She wants him to continue on his oxygen, proair, qvar, and vest treatments. She is considering trying an apap machine for Jack. It is similar to the cpap and bipap machines for sleep apnea. It is experimental and insurance doesn't cover it. If she decides it is something Jack needs then we will have to make another trip to Houston because no one close to Memphis does it.

I know it seems like alot of trouble to go to just to hear that Jack is doing great. I was worth it to me to hear it from doctors that see Leigh's kids all the time. It put my mind at ease that everything that can be done for Jack is getting done. I couldn't live with myself if I didn't make sure that I was seeking every opportunity for optimal health for Jackson. I can't cure the mito. I can't get rid of that ugly thing that is within the very cells of my child. But I can do everything in my being to give Jack every chance to live the best life he can. I do that my seeking the most experienced Leigh's doctors that I can physically get Jack to their office. That's my job because I am his mother.
Thank you so much for checking in on Jackson. He is a very special mito boy. Please continue to pray for good health for Jackson.  Pray for wisdom for the doctors that see these kids. Please pray for the research that is going on right now with EPI 743. Right now it offers the most hope for Jack and kids like him. Please continue to ask the Lord for a cure for this disease.