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 racesonline.com 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.

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.

Guess what Jack did yesterday!

Jackson has been such a happy and healthy boy lately! He has been staying healthy because he doesn't go anywhere! I can't remember the last time he went to the grocery store with me. He can't catch it unless it comes through our door. I hate that his life (and ours) has to be so isolating for now but I can't allow him to get sick. I can't let him get go through another hospitalization with I.V.'s and fevers. I gotta do what I gotta do to protect him. Cold and flu season will be over in a few months and I can't wait!

School started back on Tuesday for everybody including Jack. His teacher, Ms. Anna, set up his computer with his software. The program choice for the day was a story about a momma cow looking for her baby. The computer would read the page and Jackson would have to click to turn the page. He clicked to turn the page all the way through the story. It was a total of 17 clicks! It was amazing to see him click to turn the page to hear more of the story! After the story was over Ms. Anna hooked his switch up to his switch toy Elmo that sings ABC easy as 1,2,3 by Michael Jackson. With prompting, Jackson clicked his switch and made Elmo sing and he loved it! Ms. Anna walked away to get another switch toy off the shelf. When she came back to the room she and I stood back away from Jackson where he couldn't see us watching him. We watched Jackson wiggled his shoulders, neck and head to try to figure out himself how to make Elmo sing. He was clicking on his own without prompting! Ms. Anna said this showed that Jackson was a natural learner. He wanted to figure out himself. This is one proud momma! Jackson also showed critical thinking skills by clicking his way through the story. Jackson wanted to know what happened next in the story! It was such a great day! All of those skills have been discovered because Jackson is staying healthy. 

So what's new?

I haven't written to you all in quite a long time. So much stuff has happened since August. I started the process to get Jackson a new stander, AFO's, wheelchair, a new bed and a new kind of diaper at the begining of school. So far, Jackson has gotten all of those items except his new wheelchair. I called last week and it is being assembled as I type this by the techs at Glass Seating and Mobility. I wish I had kept a log of all the phones calls and apts it took to get all of that done. You may ask why the need for all of those things. Jackson is a growing boy that's why. He weighs right at 50lbs now. It is just amazing!

Wesley is still loving playing baseball but it's all on hold until the spring. I am enjoying the calm that winter brings to our schedule. Elizabeth is still dancing and enjoying her jazz and ballett classes. They have their Christmas program at school this week.

What's Jack been up too?

School has started back and I am so glad!!! Jack and I enjoy the quiet! I have to say I don't miss the fussing and fighting between Elizabeth and Wesley. I miss the easy days of no real schedule though. We have traded all of that for a quiet house and homework. Oh well...
Elizabeth started 5th grade and Wesley started 3rd grade. John and I along with Jack's doctors decided it was best for Jack to go homebound for school. Homebound means that Jackson is too sick to attend school. We thought with his new onset of dropping sats while sleeping during seizure, increase of frequency and his WEAK immune system that it is best for Jack to have the teacher and school therapists come to him. I have been taking him every Monday to physical therapy at LeBonheur Germantown rehab. We have a great therapist that has been helping Jackson with positioning, stretching, home program, and equipment evaluations. A new stander has been ordered for Jack. The stander is a piece of positioning equipment that will help him stand up. It is important for his hips, bones, muscles and internal organ position. As soon as the school system starts sending the therapists to the house Jack will be put on consultation at LeBonheur Germantown rehab. We will just have to visit them once every three months. Charlottte is still coming from No Place Like Home to help take care of Jack. I think she is in love with Jack. She has been a fantastic help. Elizabeth is taking ballett and jazz this year. Wesley is playing baseball. Wesley usually has two games a week. We have wonderfully, crazy schedule.

Mitochondrial disease awareness week is September 18-24. I just planned Mito night at McAlister's Millington. It's going to be Friday, September 23, 2011 5pm-9pm. Even if you don't live near Jack, you can still help Jack and other kids just like him, by investigating opportunities in your community that may be having events. I am super excited about raising awareness and fundraising for a cure. Thank you so much for your continued support. Your dollars are funding research that may one day offer a treatment for mito. I am so, so, so, so, grateful!! Sticking together is the only way to beat this disease. Thanks so much for all you have done for Jackson!

A mito summer

Hey Yall!

I had no idea that with home health came so much help! Jackson's nursing supervisor has called and gotten Jackson's diaper situation @ Target worked out. She told them all about my troubles and she is helping me switch diaper companies for next month. She is also helping me figure out how to get the Solace nutrition Cyto-Q (Co-Q-10) covered by insurance. She has been making all the phone calls and I just follow up with one phone to her. It's great!

Jackson is finally better. His lungs were clear today for the first time since May. I was so excited! He went to the dentist today and got a good report too. I have been trying to do more during the day with E and W. Charlotte's hours are from 10am-6pm. Since Jackson has been feeling better I have felt better about "leaving" him with Charlotte. I am never very far away and not gone for long amounts of time. I have been taking the kids swimming at friends houses and trying to spend some time with them. Just going to the grocery store with just them has been a treat. We have only been getting Jackson out when he has an apt. It has been way too hot for him to be out in this heat for one second. He has been struggling with his body temps. It seems to always rise when he gets dressed. He has been spending most of the summer just in his diaper. I am working with Elaine (home health nurse supervisor) to get Jackson a cooling vest. I don't want the evaporation kind. I don't think Jackson would like to sit in the wet. I want one I saw that works with Gel packs. I bought an ACE bandage reusable cold pack. We put that between his back and the wheelchair/carseat. Sometimes, we put it on his back while he is lying on his side in the bed to cool him off. This seems to help cool him off. His temps have been 99.5-100.2. These might be a new normal for him, I am not sure. They just can't be normal because before all this sat dropping and bronchitis his temps were always 98 degree range. Today he had a normal temp 98.6 for a little while. I have emailed Dr. K and they all think the body temps are the dysautonomia. His brain just can't regulate his body temps. The heat hasn't been helpful either. We keep the air in the house low. Everyone says my house is a refrigerator. I have the bill to prove it too! It's all worth it though, I gotta do what I gotta do to keep Mr. comfortable. He hasn't dropped his sats like he did before the last hospital visit since the increase in meds. The zonegran made him sleepy at first but he seems to have gotten used to it. If he is experiencing any other side effects I don't know. I'd give anything for him to tell me.  The temps may be another indication of disease progression. I don't know...
Make-A-Wish came and interviewed us last Thursday. They asked lots of questions about things Jackson liked. It was hard to answer because he really doesn't indicate a favorite color, toy, etc. I told them that ever since Jackson was dx we try to do 2 things. 1) make happy family memories 2) do anything to raise awareness and funds for mito. I even suggested a commercial with a celebrity! Our #1 wish is to go to Disney World. The kids and I have never been. John went when he was little. I don't know when the wish will be granted or when we will go to Disney. I do know that we will go early spring or late fall so the weather will be cool enough for Jack to roll.

Exciting news!

Jackson is still fighting this respitory virus. He has been runnign temps from 99.3-100.1. I took him to Dr. Frizzell on Monday. He put Jack on Septra. During our visit he read all of Jackson's reports and exmined Jackson very carefully. It was not a rushed visit. He thought very carefully before he made the decison because Jackson has been on so much antibiotics lately. I think we probably should have left the hospital on anitbiotics. I asked doctors before we left and they felt at the time the iv antibitics would cover Jackson. I think they expected Jackson to recover quicker than he has. Jackson is coughing less and has less secretions but this unusual high temp is still hanging on . I think he is feeling better because I am seeing more smiles and excited vocalizations.

I took Jackson to Dr. Stokes's office today for a follow up about the sleep study. When we got there the receptionist told me the apt had been rescheduled for July 1. I don't know how this change occured. I was not notified. I was put out. Dr. Stokes had left for another clinic and was not available. So I did the only thing I could do...we turned around and left. I was upset,  but what would throwing a fit do. It certainly wouldn't help the situation so I left calmly. This  Memphis disorganization just reminded me of why I sought help for Jackson in Houston. They seem  have it together down there. I faxed all the reports of results of all the tests done in the hospital to Dr.Koenig (neuo)  and Dr. Smith (pulmo) on Monday. Guess who called me personally on Tuesday morning? Dr. Smith called and spoke with me about the results of the sleep study and the droping of O2 levels that Jackson has been doing. She had already spoken with Dr, Koenig about Jackson. Can you believe that? Two of Jackson's specialists actually communicating with each other for the benefit of Jackson!!!WOW!! I was blown away. After I caught her up on the past 8 weeks of all things Jackson, she said that after hearing me describe the episodes she and Dr. K felt confident that these low O2 episodes were neurological in nature. They are evidence of what is going on in Jackson's brain bcause of  Leigh's. They had two theories. First, Jackson has been sick with this respitory virus and his siezure threshold is much lower during illness. Second theory, Jackson has experienced some disease progression. I think it may be a little of both. I don't want to think he's had disease progression but I can't ignore the obvious either. We are to follow up with both Dr. Smith and Dr. Koenig on our next trip to Houston. I haven't planned it yet but I need to do it soon. I felt more confident after speking with her about our course of treatment for Jackson. A second opinion never hurt anyone. I rely on their experience with  Leigh's to help guide us through this illness. I know there is nothing we can do to make the disease go away. Alot of what Memphis doctors have done for Jackson is the same as the Texas doctors would do. There is however, alot things Memphis docs could do to hurt (Mito) Jackson.  I want to make sure that everything that can be done for Jackson is done. I just couldn't live with myself if I didn't.

So our exciting news....Jackson has been nominated for Make-A-Wish. We were nominated by a dear friend. We are super excited and honored by this nomination. We have to have a wish ready by next Thursday when they come to our house to visit Jackson. I am not sure what Jackson will wish for. If anyone has any suggestions please feel free to email me. We have thought about a trip to Disney and building Jackson's own room. I don't know what to expect from this experience but we are all excited.