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.

Answers...

So, the million dollar question, Why is Jackson dropping his sats ( O2) at night. After all the tests, doctors think Jackson's seizures where causing him to stop breathing, dropping his sats while sleeping. He never had any of these events in the hospital. His EEG revealed Jackson having an increase in his seizures so that theory makes sense. Pulmonary's theory of reflux was never fully proven. Jackson did reflux during his test but it wasn't anymore than you or I would during the day. The elusive sleep study wasn't reallyany help in determining what would cause him to drop his sats in the night. It did show Jackson does not sleep like the rest of us. His seizures don't let his brain rest. They said they saw constant seizure activity during the sleep study. Dr. Kleinman the resident that has been taking care of Jackson the last 3 visits in the hospital said Jackson had grossly abnormal sleep pattern. So rest is very important for Jack. I am going to send all these test results to our docs in TX for a second opinion. Neuro in Memphis recommended increasing the Zonnegran levels to see if we can control the seizures better. I plan on researching the results myself. Please continue to pray for Jackson and other mito kids. We need a cure.

Hospital again..

I took Jackson to Dr. Frizzell on Friday. The night before he had dropped his O2 levels several times in the night. He is also having alot of trouble getting over thie respitory virus. Dr. Frizzell had left for the day and we saw Dr.Livingston. He had spoken withDr. Frizzell about Jackson and I think they had predetermined to admit Jackson. Jackson has not dropped his sats while being here. We have been getting vest therapy, albuterol and his Qvar. They have been monitoring his temp and it has been anywhere from normal to 100.6. Jackson has been getting Tylenol for the fevers. There are two theories as to why Jackson is dropping his O2 levels at night and not the day. Neuro theory is that Jackson is having seizure activity that is inhibiting his breathing. Today, Jackson had an eeg and a Upper GI study. The eeg revealed that Jackson had 5 myoclonic seizures and some epileptic events. To help control these events better they are increasing his Zonegran. The Sleep study results were inconclusive as to whether there is apnea. He only dropped his sats to 92 during the study. That's all they told me today. It just didn't gie us the answers I wanted. I think I will ask for a copy and pick it apart at home later. The second theory, is from Pulmonolgy is that Jackson is aspirating his stomach contents while sleeping. He is gettins so relaxed during sleep that he is loosing what muscle tone he does have while awake and the stomach contents are reflux. During his upper Gi study he did reflux. So now I am waiting to hear the plan from Pulmo. Jackson has a salvia gram ordered for tomorrow. They ordered this test to see how Jackson is managing his saliva. I will post the results and the plan from pulmo tomorrow. I am glad that we've gotten some answers today. I am also glad that there was eeg results that showed seizures. I have been worried that the O2 dropping was a progression in the disease. We will see if the increase in meds helps. We really won't know if it is working until the meds get in his system for a while, at least a few weeks. That's all I know for now....Thanks for checking in on Jack.