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.

Sunday May 29 9:53

Jackson had a fair night. He slept from 9pm until 3am. He didn't wake up when they took his temp at around midnight. It was a normal temp. At 3am his diaper had leaked. The bed was soaked and he was cold. He has had round 1/3 chest vest sessions already. He  will get albuterol at 12:00. he is trying to sleep some but it is  hard with a stuffy nose. He doesn't seem quite as tired as last night but is worn out from the vest. His temp was checked in the 8 o'clock hour and it was 100.9. He has had some Tylenol. Just waiting on Jackson's body to fight these germs off.

My heart broke on Tuesday

I went to Ava's Kindergarten program on Tuesday. Her class was very cute! I am so proud of all of her accomplishments this year. On the way home, I got a phone call from Christine. She is a mito mom that meets in our little mito mom group here in Memphis. She told me some very sad news. Emma LaCroix had passed away. Emma's mom Karrie was the first mito mom I ever talked to. We met in Indianoplis, In at a UMDF symposium. John and I went to one in 2008 shortly after Jackson as diagnosed. The LaCroix family are very near and dear to me.  I was and still am very heart broken.

I went to Emma's visitation on Friday night. Before I left, Charlotte took Jack's temp. It was 100.5. I was concerned but we had been out running errands and I thought Jackson may have gotten too hot in his car seat. We began the cool down process which includes Tylenol or Advil. I called to check on him and his temp had gone down to normal. When I got home Jack was still awake waiting on me to snuggle him. His nose was stuffy and I could tell he might be coming down with a cold. He kept me up off and on through out the night crying. At 4am I got up and mixed up the humidifier and looked for the thermometer. I took his temp and it was 101.5 I gave him Advil, fixed the humidifier and started thinking about going to the ER. I took it again 30 min later and it was 101.8. I calle mom and started packing for the hospital. Mom and I made it to the ER around 6. God was watching over us because we had a doc we've had before. She remembered Jackson and his protocol and did not waste time. Jack had an chest xray, blood drawn, and iv started quickly. We got up to a room and there was so much in and out and in and out and more sticks and in and out. Jackson was worn worn worn out!!! Respitory wanted to come in at 8 to do vest and I told them that would be to late. Jackson will be asleep and no one is waking him. They came at 6 at my request and put the vest on Jack. They seem to be short on vests so Mom is bringing Jackson's from home in the morning. I have also learned that Respitory runs on their own schedule for therapy times alway 8am, 2pm and 8pm regardless of what the patient does at home. I don't think this policy is working for them. These time will not do for Jackson. They are too close to feeding times. He will vomit if they shake him an hour after a feeding. I received some resistence to changing their time but in the end they (RT) saw it my way.  He finally fell asleep around 9. We are suctioning his nose, throat. He is on D5 for support while febrile and is being monitored. They took his temp at 11:45 pm and it is normal. I am hoping that this visit will be shorter than our last in Dec.

I know God is taking care of Jack because the resident that is taking care of Jack is the same one from Dec. that was so interested in mito went home on his day off and read about Leigh's. He remembered us and I was so glad I didn't have to pull out my mito 101 speech. One less thing...sometimes it's good not to have to explain Mito Jack.

Please continue to pray for the LaCroix family as they grieve.

Sleep experience ends in disgust.

So the last blog, I must admit I was in a little denial...
 Jackson has been having low Oxygen saturation off and on during sleep at nightfor a while. When Jackosn goes to sleep at night or even a nap I'm not sure if we will have a good oxygen filled night or not. Last Monday, Jackson's sats dropped to 84. He usually sats from 95-99 at night. Usually when and if his sats drop I wake him and his sats go up and he will fall back asleep.  Monday night was different than the other times and scary for John and I because it was a little more difficult to wake him. He also repeatedly dropped his sats. The pattern was his sats would drop, I'd wake him the sats would go up we'd go back to sleep and his sats would drop again. I also tried repositioning to make sure Jackson was in a position to make sure his airway was open. He did this from about 4am till about 6am. I argued with myself for a few days. I tried to put this incident out of my head thinking it was just once don't make a big deal out of it- try to wait until he does it again or there is a pattern. The more I thought about waiting the more I worried that next time I won't be able to wake him what if ....what if... so I decided to call the doctor to get an apt. I called and got an apt for later in June. Then thought about it and called back and told them what Jackson was doing and they got us in on this 5/20 Fri at 8am. We saw Dr. Stokes because I refuse to see Dr. Shoumacher because of his bedside manner the last time we saw him. . I told him that Jackson needed someone in Memphis on his team that could help manage his respiratory issues because obviously we can't get to TX when Jackson can't breathe.I told him we saw Dr. Smith in TX because she had experience with mito and respitory and sleep. I gave him Jackson's story, quick version of course, and the reasons we were there to see him. Dr. Stokes agreed with everything Dr. Smith in TX had recommended. He was willing to work with Dr. Smith. I was thrilled! I had been sick at my stomach thinking about having to go to this Dr. apt and the possible battle that might happen. I had already decided that if he was not willing to be on Jackson's team then we'd go find someone else. I was worried that this Memphis doc would not want to work with an out of state doc for Jackson's benefit greatly worried me. I was so happy when he agreed! God took care of the battle for me! My worry was for naught and only gave me an upset tummy. I was even further surprised that he had just returned from a convention were there had been presenters about mito and sleep disorders from the University of TX. He said he did not get a chance to read their  abstract but would get a copy now and read it. It was just thrilling to see how God took my prayers and answered them abundantly! My prayer now is that Dr. Stokes will continue to put his ego aside (realizing he doesn't know everything) for the benefit of his patients, Jackson being one of them.

Dr. Smith (pulmo TX) wanted Jackson to have a sleep study. Dr. Stokes agreed. When we left the doc apt on Friday we scheduled the sleep study for late June. I was ok with that apt. I was at peace with it because I trust that God would keep Jackson until we could get some answers. The office called Fri afternoon after we got home from ath apt, looking for me to change the sleep lab apt to Fri. Doc Stokes wanted the study done before the end of June. They wanted him to come Friday night but the spot was filled before they could get me on the phone to agree. They wanted us to come Sat, but Buddy had his birthday sleepover and I just couldn't miss that. We settled on Sunday night as the "big" night. I just had to trust that God would keep Jackson breathing through the night until we got to the study. Jackson had to be at LeBonheur at 7pm. John, Jackson and I arrived and rang the entry bell at 10min till. The door was an electronic lock and we had some difficulty getting in the door. The woman said through the speaker with an annoyed angry tone  "You have to open the door." I knew right then she was going to be a problem. I hoped that she was just an unhappy secretary and we would not have to deal with her the rest of our stay. I was wrong. We went to our room and began to get settled in. Jackson does not have BM's on his own. He has always had a difficult time having BM's. This is a little embarassing to talk about but for everyone's education about mito we've got ot get over it. Just about every kid with mito has GI issues. They are vomitting, have diarreha, constipation, won't eat , can't eat, can't digest....you get the idea. I know all of have experienced GI issues with our kids or ourselves. Now I want you to imagine dealing with those issues everyday all day, never having a break and Pepto just doesn't solve the problem. It's a part of mito and it stinks...really! We were out of enemas at home and Jackson did not get to poopie before we left the house. I stopped at Walgreens and got one and planned on giving it to him when we got to the hospital. I wish I had taken a picture of this woman's face when I told her Jackson needed to have a BM before she hooked him up with all the wires. Her face was one of shock and disdain. (I just kept thnking can she be for real?- I am here for Jackson, I am here for Jackson. She is temporary. ) Well Jackson poopied and I got him cleaned up and we were ready! Then Jackson poopied again and this time it got on the sheets and everywhere. So I went to ask for clean sheets and I got another look and some body language that she was not happy at this news. I just said "if you give me the sheets, I'll change them. " So, I did, I cleaned up Jackson and the bed -myself. Jackson was getting tired by this time but he still wasn't hooked up to any monitors. I also ended up cleaning Jackson's bed with the lysol wipes I brought with with me. Tip #1023 ALWAYS go to the hospital with Clorox or Lysol wipes. Hospitals are Nasty places. The bed and bedside table were NASTY!!!! I wiped until I didn't get black muck on my wipes. I was thoroughly grossed out when I went into the bath room to wash my hands and found a dirty sink. How did I know it was dirty you may ask? There was evidence of tooth brushing and I'll leave it at that. The mirror had evidence as well. I wiped and wiped until I felt it was clean enough to wash my hand in. She finally came in about 9 and said she it was time to get hooked up and I should put on what ever I brought to sleep in.  I got dressed and I carried Jackson to the prep room and laid him on the bed. The head of the bed was elevated for easier access to the patients head. For Jackson this means that he will slide all the way down the bed until he ends up in a crimped, bent mess. She got a little aggravated that he did this at the beginning of the process. I tried to explain but she cut me off and said she would get blankets to stack to keep him from sliding. The blankets helped, slightly. She continued on with putting the probes on Jackson's head. This wires had to be applied with strong glue. It is very similar to the glue used at nail salons when you are having a set put on. It smells bad! The techs also use compressed  air to make the glue dry faster. She scared Jackson into crying when she used the air. He started crying and didn't stop until he finally passed out from total exhaustion. She did not once try to tell him what was coming during this whole process. In the past, the techs have tried to give comfort and empty apologies to Jackson during this process. They have even tried to explain the procedure or that something may be loud, stinky, tingle, cold, etc. There was nothing form this woman. She also had the TV on the billboard music awards and would occasionally look at it. I thought it was an inappropriate show to have on especially when Mary J. Blige and Little Wheezy were singing (if you can call it that) and there were more bleeps than words. I just made a mental note and decided that if the night didn't go better I would include this nugget of info in my letter of disgust. It would have comforted Jackson a little to see a kid show  instead of the trash that was on the TV. After we went back to the room she turned the TV off and said "it was time for sleep". "Absolutely, no TV."  I tried to explain that Jackson was used to the TV and lots of noise but she cut me off again. I understood we were trying to make Jackson comfortable so he will go to sleep. She was not interested in his comfort or mine either. She used her annoyed angry tone on me again and said "You are in a sleep study!" and ended it like that. I had other questions regarding the sleep study and they were all met with the same attitude and the same response"You are in a sleep study." She never even faked interest in why we were there. Based on her attitude I think she thought we were there for the fun of it or a whim and had interrupted her work, I mean vacation. Me-(in a snooty British voice) "Oh Yes John I should think Jackson would love to have 10 probes glued to his head and face and chest. I heard they also put this thing over their nose and mouth to measure the CO2 levels. Jackson would just love that! Let's do it for Jackson."
John (same snooty British voice) -"Yes dear lets! He'll have a jolly good time!" Please - Give me a break!!
So Jackson began crying while having the probes put on.During the process I fought the urge to grab him, ditch our belongings (including his wheelchair) and run for our lives. I just kept thinking it has to get better.
So back in the room Jackson cried until he passed out. I tried the snuggle and he wasn't happy. I tried letting him lay by himself. He laid there and said Maaaaaa.....Maaaaa....I felt so guilty. I felt like the floor of a taxi cab! I snuggled him and he finally went to sleep. I snuck out of the bed with Jackson and got into the bed for parents-I mean the old wooden church bench they made to look like a bed. It was horrible too. About 6:30 we woke up with a start! Two techs walk in a flip the light on with out a word. Not Good morning Jackson , nothing. It was just rude all the way through the situation. She began taking to stuff off Jackson. She was very aggressive with the tape on his face and chest. Jackson began crying again. He didn't stop until we made it back to Frayser on our way home to Millington. She was rushing us out so fast I just threw clothes on and got out of there. If you or anyone you know have to have a sleep study DO NOT GO TO LEBONHEUR!!!!! It was a miserable experience and I'm not sure Jackson's test results will be reliable.Because of the fit he had before he went to sleep and fit he slept in.
We made it home and Jackson was so happy to be in his bed. Jackson's bed is the king size bed in the master bedroom, not the crib style hospital bed in the same room. Don't get them confused! LOL
After we got home Mom called from Jeter that Wesley had an upset stomach. I knew he felt bad when she said he didn't eat his Chick-fi-la breakfast. So another illness to tackle....we will make it. Jackson went to sleep immediately after I laid him down after coming home from picking Wes up from school.
At the end of the study she was still mean...and all my please, thankyou's, yes mam's didn't means squat to her. I am filling out  my survey and writing a letter to Mary Armor president and CEO of LeBonheur.

So... what is new?

We have been so busy with life in general that I have not had time to post any new updates on Jack. I think of that as a good thing...no news is good news.
We had a fabulous Easter. The kids hunted eggs and we got to visist with family. Charlotte, The home health nurse,  has been taking care of Jackson for a month now. She is doing a great job. No matter what craziness is going on in the house, Charlotte is solely focused on taking care of Jackson. I am so glad for that! What started out as feeling strange has turned out great! She has helped Jackson so much! Jack has been fighting bronchitis for over a month and I think Jackson is finally "drying out." He went back to school for the first time in a month last Tuesday. He had a good day. He was all smiles when he saw the ladies in the office. He is such a ladies man!

I am so super excited that school is close to being out. I am so tired of fighting the kids to do homework, go to bed on time, project after project, etc. If I had to do one more project this year, I think I'm gonna loose it. I am ready for a break! Jackson is too! I want to spend the summer with the kids on day trips to different places in and nearby Memphis. Now that Charlotte is on the team, Jackson won't have to get out in the heat. I am super excited about being able to take Elizabeth and Wesley out during the summer day.

Overall, this mito family is doing ok and looking forward to summer.

Something good...

For the past two weeks we have been trying to get a permanent nurse to come to the house to help take care of Jackson. Last week we finally found one that has worked out. Her name is Charlotte.  She has been great with Jackson. She keeps him dry, fed, meds and vest. She also bathes him.  I must admit that it has felt weird having a stranger in our house taking care of Jackson.

Something good happened last week because of having nursing in the home. I usually don't get the usual kid whining from Jackson. The "I want you Momma" or "I want Daddy" We never see Jackson ever really show a preference for either one of us. Sometimes I've wondered does he know who I am. Does he know John? This week I got my answer. Jackson does know us. After having strangers in the house taking care of him for two weeks he has finally showed me that he knows Momma and Daddy and actually prefers us. The first time I noticed the developmental milestone,  Charlotte had him in the bed and was changing him. I was standing nearby but I don't think Jackson noticed. At the same time John came in the door, home from work. Jackson heard him talking to Wesley and he began to fret some. Then John started in the room but then turned away to go wash his hands. That's when the water works started. Jackson became so upset! He wanted his daddy! He had seen John turn and leave and it broke his heart. Jackson teared up again the next day when he saw me come in the living room. He had been sitting in his wheelchair in the living room with Charlotte. I had just been popping in and out of the living room checking on him while making dinner in the kitchen. It was upsetting to see him cry but oh my goodness he was indicating a preference for him momma. It was a sweet feeling seeing him indicate a want/desire. That is the first time I've ever seen him plainly express through crying that he wanted a parent. It is something I will never forget.

busy and sick is the usual

This last week has been just crazy!!!! We have two precious friends Taylor and Jacob that have been sick and in the hospital. Taylor is finally home but our friend Jacob is still sick. I have been worried and praying for these families. Please add them to your prayer list.

Saturday, Nashville's mito chapter had there Energy for Life Walk. They raised $70,000 for the UMDF. I am so thrilled with their results. It was a first  walk for them. I don't care how or where the money comes for mito it just has to come! We need a cure now!!!! I think it is absolutely SHAMEFUL that we have so many drugs for trivial things like longer eyelashes and bigger longer lasting you know whats. Did people have to raise money for those drugs? Not that I can recall. I don't recall ever seeing 5k or donation jar out anywhere in honor of raising money for finding a cure for bigger longer lasting you know whats. That would be funny though... just the thought of asking for sponsors for a cure to have bigger longer lasting you know whats. Can you imagine that converastion??? It is just ridiculous and SHAMEFUL on their part that in this day in age, 2011,   pharmaceuticals is still all about money and not about curing disease.

We were planning on going to Nashville and supporting them in their mito efforts this weekend but didn't go. I was invited to LeBonhuer's Family Partner council Open House that was held the same day. I have been interested in this organization for over a year. I was super excited to get an invitation to attend. I met some really great parents and staff that love LeBonheur and want to see it do even greater things for it's patients and families. One of the goals of the group is to doctors and nurses of LeBonheur be more patient and family centered care. Patient-family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients and families. I am excited to be a part of this noble goal. I am not sure yet what my role will be in this organiztion of parents and staff but I am so looking forward to it.  I also hope to educate a few more people about mito along the way. I came down with a cold last week. In all honestly I had it on Saturday when I went to the meeting at LeBonheur. I dragged myself there because I felt it was sooooo important that I go and be a part. I covered and turned my cough, washed my hands and tried not to shake any hands. I did what I could not to spread anything. I hated the idea that I could spread germs so I tried not to stay too long. It has kicked my large rear end to Memphis and back. I finally went and got some meds along with a sinus cocktail shot (no alchol was involved). I feel much better. Bad news though, Elizabeth had this now i think and Jackson has started this afternoon with a temp and fussing. He seemed fine yesterday but didn't go to school because we had to go to LeBonheur for blood work. The doc wanted to check his Keppra and Zonegran levels. Jackson has been having longer lasting and stronger seizures for the past 2-3 weeks. We have increased meds and nothing has helped. He has also been experiencing some pain with them also. We just snuggle and I rub his head until he feels better. Today, I decided to try school but he didn't have a good day. I picked him up from school with a 99.7 temp. After some debate with Jackson, he is sleeping now and I hope he wakes up happy and feeling better. This new little hot spell has changed our evening chuch plans but we are going just roll with it.  We tried school it just didn't work today. oh well...

We started home nursing last week. I have mixed feelings still about having a nurse. I feel guilty, happy to have the help at the same time. It is a stressful time. I am allowing a stranger in my home. I am allowing a stranger to take care of my chronically/terminally ill child. Can I trust them? All of this and other things are in my head right now. We have a good nurse this week. Her name is Charlotte. She seems to really hit it off with Jackson and wants to do exactly what needs to be done to take care of him. She is willing to take direction from me which is good because after all I am his mom and know him the best.

I will be glad when TCAP is OVER!!! Elizabeth has been so STRESSED over this test. She is looking forward to it being over as well. She takes so much on herself and gets so frustrated when she doesn't immediately understand and new skill. She is so full of DRAMA!!!!
Wesley has started baseball season. He is a Rivercat and is playing in Munford. As usual, he is taking baseball with great seriousness. It is so cute!!! I watched him practice a few weeks ago and he can really smack a ball. I am really looking forward to his games.

Blessings and Gratitude

Saturday was such a BIG day! It was cold and rainey weather wise but the day was filled with the warmth of friends and family. Are you ready for the results? Drum Roll please....$18,0000 was donated to the UMDF. I am super excited!!!! THANK YOU! !!!! Every dollar means hope to me. Hope that a treatment/cure is just aroung the corner.  I feel so strongly that a treatment plan is possible for mito. It's going to take time, money and most of all, everyone working together for a cure/treatment. I am so grateful to all of you for the hope you gave on Saturday. I am looking forward to next year!

Jackson has been fighting a cold now for 5wks. We've had days that I've thought we've got it licked and then Jackson gets weak and tired and it feels like we start over. I have been giving Jackson his vest treatments twice a day along with Qvar and ProAir. His O2 levels have been within normal limits but I am keeping a close eye on the numbers. I am doing my best to make sure he gets enough rest. I started the process to get a home health nurse in December when Jackson had pneumonia. Audra started on Tuesday. She was able to keep Jackson at home Tuesday night while I took Elizabeth and Wesley to Family Basketball night at Jeter.
I felt so guilty leaving him at home. I know in my head that it was better for him to be warm and dry at home rather  than out in the cold rain. I missed him all the same at the basketball game. I wish so much he was able to follow his big brother around and annoy his big sister my getting into her stuff.

It's Jack's Birthday!

John and I are happy to announce that Jackson is 4 years old today  It feels like yesterday that I got to wheel down the halls of Methodist Germantown in the middle of the night to see him  for the first time ever in the NICU. He had and IV, Oxygen mask, and NG tube and he was so tiny. He was tiny to me but compared to the other babies in the NICU he was a giant at 5lbs 14oz.  His birth and life have been filled with so much drama, I can barely recall it all. I look back on the carepages to help my memory sometimes.

Here's the part where if you teach Elizabeth and Wesley you should tyrn your head...
We took the day for a family day to celebrate Jackson's birthday with a trip to Incredible Pizza. Before we dealt with mito I would have sent them to school. I feel like life is way too short and so is childhood these days that I have instituted a new policy for the Culley family. The new policy is no school for anyone on a birthday. They only come once a year and I'm so glad that they do!! Each birthday is so very special. It marks a year full of discovery and growth for my kiddos and I think that deserves a celebration.
Life is precious...Celebrate your years!!!

Jackson's race is coming! Are you ready?

Just Talking....

Jackson went to school on Monday but had a bad day. They told me he just wasn't himself. My momma alarm had already been ringing because he had been grumpy that morning. He has run a fever 99.5-100.5 off and on since Mon. and has lots of  congestion with a cough. His coughs are very weak. They are not strong enough to clear everything so he sounds like Darth Vader again. I began antibiotics, Tylenol, Advil and increased his RT ( Respiratory Therapy). He is slowly feeling better. It's just such a L-O-N-G process to get him better. I need Spring Yall!!!!

I come from a long line of talkers. Talkers are those people you duck and hide from when you see them at Walmart because you know that your ground beef will be brown and the ice cream will be melted by the time you get to the check out if you get stopped by them. Yes, I will admit that sometimes I duck and hide to avoid people and conversations at Walmart. I like the trips to the store where I am totalling immersed in my list, coupons and scoring a great deal. I like the grocery store during the week when nobody is shopping except stay at home moms with a slew of kids and senior citizens. It's mostly quiet except for the sound of the kids begging for their favorite cereal or the occasional "Milk is how much? Oh my God! I remember when it cost a nickel." from the seniors. I know you may say she must not get out much but say what you want, this is who I am and I like me. Taking Jackson with me to store is alot like going out with a celebrity, not that he is all that popular but everyone stares just the same. Being totally focused on the great deal and quick trips are just not possible.  I am sure the stares are out of care, concern or curiosity but it still stings.
Anyway, back to talkers...I am one. I talk everywhere and to anybody about mitochondrial disease and Jackson. I will even talk to a complete stranger that does stop me at the grocery store and ask what is wrong with Jackson. I received some invites to talk in past few weeks. My first invite was to the Mustangs of Memphis group. They are a group of wonderful people dedicated to the preservation and restoration of Mustangs. They hold car shows and donate the money raised to different charities. I got to present the UMDF and speak about mito to them Tues night at the Dobbs Ford at Wolfchase. This was my first time ever really speaking to a group in a LONG time.  When I was done I thought of about a hundred different things I wish I had said. I don't know what charity they will donate to yet. There were two other charities presenting also. I also received an invitation to speak to the faculty at Crestview Middle School in Covington. I will go there this afternoon. So coming from this long line of talkers I am a little perplexed as to why I am feeling a little nervous about speaking.  It's not like I don't know what I am talking about.  I think Jackson and I will spend the rest of the morning figuring out our speech.

New doses of meds

Just a quick note...
Jackson started the new doses of his seizure meds today. He was fed and given meds at 7am. He was so sleepy at 8:30 by 9 am he was asleep. I knew he could never make his day at school so he stayed home. He rested and woke up about 10:45 after I fed him his 10:00 feed. He has had some myoclonic jerks and some tonic seizures today. It will take some time for the new dosages to get in his system. We are giving the meds about two weeks to work and notice a diffference. If they don't do the job we can increase a little more. I really don't want to have to give him anymore meds than necessary.

Facing Jackson's terminal illness everyday is by far the hardest thing that has ever happened in my life. It helps my spirits so much to know that so many people care about us and this little thing called the Jackson Culley Mito What 5k! . Thanks so much to each and everyone of you that has registered for Jackson's race. Your support means more than you will ever know. So, even if you can't be with us on race day and would like to support our efforts to fund research for a cure for mito please register anyway. I will get the shirt to you through the mail or whatever way I can! I would love for you to get Jack's shirt and wear it with pride!

A visit with Dr. Morgan

Jackson began having his tonic seizures again. It was something I had been keeping my eye on with him lately. As soon as I was sure that it was his seizures and not something behavioral, I increased his clonazepam per Jackson's protocol. I think the increase has helped control the seizures better. I got an apt to see Dr. Morgan our Memphis neuro. They weighed him when we got there and you guys will never guess how much this boy weighs! Drum roll please...44.2lbs!!!!! I am so proud of every pound! I am so grateful that he is able to grow! We weren't sure at the beginning of this mito journey that Jackson would ever have a chance to grow this much! As soon as Dr. Morgan saw him she was amazed at his growth. I had written all my concerns down about Jackson before our apt so I wouldn't forget anything. After describing the seizures I'm seeing Dr. Morgan felt that it was Jackson's tonic seizures rearing their ugly head again. It's time to adjsut seizures meds again due to his growth/weight gain. Which is what I suspected was going on. So she was updated on Jackson, invited to the race and saw Jackson and increased his meds today. It was a good visit.  I am going to work on getting Jackson's sleep study , sweat test, and get a pulmo apt this week. Dr, Morgan thought we should see a pulmo here to get the sweat test done. All of these things were recommended to be done by Jackson's pulmo in Houston. I feel with Jackson's respitory history we need a pulmo here on Jackson's team. I am looking for someone willing to work with all of Jackson's doctors on the team for his benefit. I will take this approach when I get the pulmo apt. I hope it works.

One ironic thing about our visit... the neuro clinic is now in the crisp, new hospital. Along with all this newness is new art for the hospital. When you walk into the clinic you immediately see a huge picture window. Right outside this huge picture window is a new piece of art called "Where the wind plays". It is so cute. It is a reallly neat piece. I really liked it. It is a whole garden, bugs and all, made out of metal. Some of the flowers were made to spin. I showed Jack this metal garden and he kind of smiled at it. After the smile and loking at the spinning flowers Jackson has a seizure. He recoverd quickly and it dawns on me...of course the spinning flowers! Spinning, flashing things are not good for kids that have seizures. I turned him around to look the other way about that time they called us back. Why on earth would you put spinning things right outside the window of a neurology clinicSomebody didn't think that one through.

Proud!

This is a birthday week for our family. My sister Caroline, cousin Josh and
Adam all have birthdays with a few days of each other. Caroline and Justin went to the Grand Canyon for the weekend for her birthday. Their baby, Harrison stayed with me, Julie and the Kropfs while they were away.  Monday the kids were out of school for President's day. After all these snow days that was exactly what the kids needed another day off.  Harrison came and stayed with me on Monday during the day. He was such a sweet baby! It's been a while since I've watched an itty bitty all day. Oh how I miss mine being little! I so enjoyed watching him play! Maddie and Eli acame over and played with Elizabeth and Wesley for a little while. I made them stay outside and play. Wesley and Eli kept asking to play Xbox and Wii. I told them it was too nice of a day to be inside. So, they went outside and played basketball and ran around with the worst dog in Shelby County, Daisy. They had a good time together. After lunch, Meme came and picked up Maddie and Eli. Then Aunt Ashley, who was also off for President's Day, took Elizabeth and Wesley to a movie. Harrison and Jackson got naps after the house got quiet. It was a busy day! I think Jackson may have experienced some jealous feelings toward Harrison. He watched me close when I was holding him and didn't like much at nap time when Harrison snuggled up between us. It was a good experience for him but one I  don't think he'd like to repeat. LOL

I had a meeting this afternoon at Jeter about Elizabeth. After seeing her TCAP scores, I requested that she be tested for APEX. APEX is what Shelby County schools calls the gifted program. Guess What???? She qualified for it!!! I am so proud of her!!!! All my reading, singing and talking to her when she was an itty bitty is paying off for her. She scored really well in everything. I am so proud of her! Did I already say I was proud? I am so proud of all of her accomplishments. Now, I have two kids in the Special Education System. As soon as Wesley takes the TCAP and I get his scores back I will have him tested too. I am so proud of my kids! It's a great feeling to see them excel. It is also a great feeling to know all my hard work at being the best mom I could be and all the sacrifices that go with that are showing up in their lives.

Jackson has an apt to see Dr. Morgan (neuro) at U of TN on Mon. I am anxious for this apt because Jackson has been having some new neurological events. He has been having some tense seizures. They seem alot stronger than they used too. I am hoping it's just time to adjust meds again and we will be able to still control them. He doesn't like them at all when they happen. He usually will cry out during and fuss alot after. Sometimes he is very sleepy after. They are disrupting his daily life. He staye home today from school because he was so tired from dealing with them through out the day. I think he had one about 3am and it woke him up. He was very fussy and hard to settle back down even though I was right beside him. He slept until 9am which is unusal for him. I know something is up... I can feel it in my mitochondria!   
I was so excited last week when he made it to school happy everyday. Last week was a great week. I hope that this week gets better for my little mito man.

Just a friendly reminder....Have you signed up for the Jackson Culley Mito What? 5K yet? There's still time www.racesonline.com or jusy check in on things at http://www.mitowhat5k.blogspot.com/

Cold bug hits Culley's

We are over the tummy bugs and have picked up another.  We all have sore throats and stuffy noses, even Jack. I am dragging out the humidifier and Vick's vapor rub. If I have a choice between viruses, I will take the cold bug any day over a stomach bug. Jackson has not been tolerated his bolus feeds lately. He has been crying every time he was fed. So today I used the feeding pump all day to feed him. He has not cried out at all. I am going to do this until I can get an apt with G-tube clinic to see what is going on. I am not sure what could be cause the discomfort during feeding. He has always tolerated bolus feeds since his tube was placed Dec. of 2008. This is a definite change. I will watch and see and make apt. to see docs.

I am so looking forward to this weekend! The weather is suppose to much better. Hopefully, Jackson and I can leave this house!

On a sad note....Dorothy the faithful Goldfish passed into the eternal aquarium last night. She was a great fish that we have had since Jackson's 2nd Birthday party.  Jackson will be 4yr old March 24. Have you done the math? Dorothy was 2yrs old!!! Call the record books! She lived a happy life in the aquarium on top of the bookshelf in the kitchen. She was a faithful companion to me every time I cooked. She knew all my secret recipes. She will be missed. Her arrangements are as follows, visitation with the family tonight from 7:00-7:05 and the internment immediate following. Her last will and testament stated she wanted to be a buried at sea. The best we can afford is the septic tank.

Still indoors...Come on spring!

Jackson didn't go to school today. It snowed AGAIN today. It's still too cold for him to get out of the house. He also has started blowing snot out of his nose. I know....here we go again. I think he got this from his sister. Anyway, just staying indoors and keeping Mister warm is the name of the game until Spring decides to show up.

I am putting this out there, ignoring my pride....it's time to beg. Last time I looked there were 90 people registered for the race, so I will commence my begging.

Please, Please, Please, Please, Please, Please, Please.... I am on my knees.... pleading  for your support for the Jackson Culley Mito What? 5K Check out www.racesonline.com to register. Also, for updates about the race www.mitowhat5k.blogspot.com Thanks to everyone that has already registered for the race. We are so thrilled that you are a part of our efforts to find a cure for mito!

Stomach Bug Hits Culley House

Elizabeth won 3rd place at her school for her 4H speech. Her speech was all about Jack and mito. The county competition was Monday night at the Agri center. She had to be there between 5-5:45. I was crazy trying to get out there on time. OMG the traffic! Who wants to live in that! Anyway....she started throwing up on the way there and mom and I thought it was just nerves and anxiety. We gave her some encouraging words and practice her speech. When we got there, they gathered everyone together in one big auditorium. Then divided everyone into grade levels and on the way to the 4th grade room she threw up again. Again, I thought it's just nerves and gave her some more encouraging words. She was number 13 in line. Yeah I know, lucky #13. Well, just as #12 was sitting down, Elizabeth got up from her seat and walked back to where I was sitting. She said I don't feel good. I knew by the look on her face that I had to get her to a garbage can and fast. We made it to the bathroom and she throw up again. She wouldn't go back in the room to do her speech. I think she was too embarrassed and she didn't feel good. I can't blame her I wouldn't have gone back in either. She didn't look so good anymore either. So we all got back in the van and went back home without her ever uttering her speech. She spent yesterday and today at home with "tummy issues." On top of this excitement she had a science project to finish. UGH....!  I have heard form Jeter that kids are dropping like flies with this virus. I am praying that Jack doesn't get this thing. I know we will be in the hospital if he does. Please pray for this virus to pass over Jack. We have a mito friend Eric that does have a tummy virus and it has been hard on him. They spent to night in their ER. My mind is filled with anxiety and worry with this tummy bug going around. I am doing whatever I can to prevent. I have been keeping Elizabeth from touching, sometimes even looking at Jackson.
This past weekend weather was wonderful. Jackson and I got out of the house and enjoyed the sunshine. It was a welcome relief and an answer to prayer. I am so looking forward to spring! I can't wait for my flowers to bloom! I am so glad though that the weather system that is hitting the east coast missed us but we the cold, freezing temps did get us. I will be keeping Jackson indoors until it warms up some. It is just too dangerous to get him out in these temps even for a trip to school. I came as close as we ever have to loosing Jackson while at LeBonheur in December. I will not do that again!!!! I will do whatever it takes to put his health above everything else!!! I am so sorry to those that this offends. I also say to those that may think I might use this situation to get out of responsibilities or think that I am overly cautious and staying home is just silly and Jackson could tolerate the cold for just the few minutes to get inside somewhere to.... stick it! Walk in my worry just one day without going to the looney bin and then we'll talk. Until then, we will be inside.

It's a Snow Day

It snowed overnight last night and Shelby Forrest is just beautiful! I know becaust the views from my windows are breath taking! I haven't been out in it and don't plan on it! The kids went out in this morning and came in a few minutes later.Jackson is staying in until spring. It is just too much of a risk for him to be out in crowds or the cold. So unfortunately, I will not have any pics of him in the snow. I feel a little sad about that decision, keeping him out of the snow., For some reason I feel like I am denying him an experience but that is the cost of mito. The risk of the energy it would cost is not worth a photo. I feel like I'm in hibernationt too. I am keeping him indoors as much as I can. He still goes to school when it is not freezing out. John stayed home from church yesterday with Jackson. It's just too cold to even get him out. I will be glad when it warms up but not too warm. The kids are enjoying their day off from school. They are watching Sponge Bob and Phineas and Ferb and rotting their brains out!

Jackson's Race is coming up soon! I am so thrilled that we are doing it again! March 26, 2011. All the details are being planned by Paul and Angie Hayes, Cindy Kraft, Jason and Brandi Hamm and John and I. All the info and the how to's are at http://www.racesonline.com/. Please register as soon as you can. Like last year we are only ordering 200 shirts at first. Depending on the response we may order more but for right now it's just 200. So get on line and register if you want a shirt. I am so excited about raining funds for a cure for this disease. I think it is so very important to research mitochondria. They play such an important role in alot of diseases. Cures and treatments for alot of different disease are only a few million dollars away. Please, Please, Please, register even if you don't want to run or walk. Just by wearing your tshirt you are raising  awareness for miochondrial disease and supporting the businesses that support research for a cure. Registration is only $20.00 this year. You get a shirt and a goody bag (on race day)  filled with lots of coupons and freebies.  I know we are all recovering from Christmas spurlges but please put this great cause in your budget. You can even register one family memberat a time if you want. WE can make a diffference in the life a child!

Mom gave me a devotional book for parents of kids that are critically or chronically ill. It was difficult through the holiday's wishing for Jackson to rush to his presents under the tree, sing in the church song service with the other kids or even sneek Christmas candy with Elizabeth and Wesley. i got mired down in the muck of how wished things were different.  God knew what words I needed to read and sent them through mom in this little devotional. It says Chapter 1 Call in the Forces. When God gathered an Army for King Daivd he gathered people from all over. Check out 1 Chronicles 12:22 "For day by day men came to David to help him, until there was a great army like the army of God." God has gathered an army for Jackson not because he is a king but because he is a child of The King. I love the way the book says for us as parents of sick kids to " Call in your forces and trust God to form your army." All of you are Jackson's army. An army of everyday people that God is using to support Jackson and us as a family through this illness with your prayers, kind words and deeds. We are so thankful and grateful for our army. I have sent to call out over and over again and each time all of you have been there for us. Thank you so much!