The results are in!

I am excited to say that Chick-Fil-a is donating $136.62 to the UMDF! Thank you all soooo very much for supporting the UMDF!

Also, the results on our second tab collection are in too! I am happy to announce that we recycled 53lbs. of pop tops and 94lbs. of cans for total of $77.00.

Chase community giving campaign is donating $10,000 to the UMDF. Thanks to everyone that voted.

It has been an exciting Mito week! Thank you, thank you,.thank you!

Ready or not

Ready or Not...It's Mito Week!

We will kick off this week with a Mito Spirit Night at Chick-Fil-A tonight Monday September 17, 2012 from 5-8 at the Millington location. I hope you all can come and say hi. Jack will be there at 5 but will probably go home early.

I will be selling green light bulbs at Chick-Fil-A tonight! Turn your front porch green for Mito! When
your neighbors ask "Why is your front porch light green?" You can say "Well, there's this little boy Jackson and he has Mitochondrial Disease." Neighbor says "Mito What?" Then you can tell about Jack and Mito or direct them the UMDF website for more info.  It would be great if take a picture of your front porch green and post it to facebook or send it to me mitojack@gmail.com. Awareness is a piece to  puzzle of finding a cure!

MITO SPIRIT NIGHT!!!!

To ALL my Friends:

Please come to Mito Spirit Night!!!!

 Chick-fil-A

8492 Hwy 51

Millington, Tn

Chick-fil-A will donate a portion of their profits to the UMDF! Bring the flyer with you!

LoVe,

Jack Jack

 

So why haven't you posted?

This summer I didn't post anything on this blog. At first I didn't blog because I was so busy with the kids. Then decided to concentrate on just having fun with the kids and let the blog go for a while. We made a list at the begining of summer of all the things they wanted to do. We accomplished most of the list.

Jacks health:
Jack has been doing GREAT for a child with Leigh's. We have not had a hospital visit since May of 2011. I give God all the glory for Jack's life and health. Like I have said before we keep him at home as much as possible. Everyone that comes into our home washes their hands before they have contact with Jack. We keep him away from as many germs as possible whenever and where ever we are. Elizabeth and Wesley change clothes when they come home from school. We protect his rest as much as possible. I work all of his appointments around his typical nap schedule. Caring for Jack is a full time job. It is not something I take lightly. Everytime Jack goes anywhere whether it's a long trip out of town or just to the doctor, it is with great thought and planning. I never leave the house without an extra day's worth of formula and supplies packed in Jackson's backpack. I do that because thoughts like how would I feed him if we were caught out away from home and an earthquake happened (fill in your favorite diaster here) and I couldn't get home right away. When we leave I have to be prepared.

He had a mild case of bronchitis in July but with lots of vest treatments, inhalers, and antibiotics he recovered without a trip to the hospital. This summer Jackson enjoyed sleeping in and getting that extra time in Momma's bed that summer time brings. Sleeping and just resting in my bed is Jackson's favorite spot in the whole world! He can be very upset but when I put him in "his spot" and snuggle he calms down and gets very excited. This low cost treatment goes a long way!

School:
Elizabeth started 6th grade at Tipton Rosemark Academy. She is really enjoying her new school. She decided not to continue her dance this year with Millington School of Dance. :(  She decided to get involved in the activities for 6th graders at TRA. She is playing on the 5th/6th volleyball team, cheering for the 5th/6th grade football team, running for student council. I am so glad that she is trying new activities and making new friends.

Wesley started 4th grade this year at E.E.Jeter. He is playing competitive baseball for the West Tennessee Bears for fall ball. He has been playing in lots of different positions. He just likes to play! He has been taking private pitching lessons too. I am looking forward to watching him play in a game soon.

Jackson started Kindergarten this year. He is homebound which means his teacher comes to the house. It is the best thing we did for Jackson. He is more alert for his lessons and is sick less too. His immune system does not have the energy to fight the onslought of germs that going to school brings. The getting ready for school and travel to school also just wears him out. We worked last year teaching him to use a switch to turn pages in a book on a computer. He can use the switch! He liked clicking his switch!  We are excited to say that we have an apt. at the The TAD Center in Oxford, MS. to get a free evaluation for Augmentative, Alternative Communication (AAC). AAC is using technology (computers, switches, etc) to establish communication for people who can not speak. Think of Steven Hawking if you need an example. Jack is just beginning this journey. We are expecting great things from Jack and AAC. I am looking forward to working with him to find out his simple wants and needs. We will be working slowly but diligently with Jack. 

UMDF:
Mom, Jack and I went to Nashville this past weekend to the Nashville support group meeting. They were having a recap of the yearly symposium. I haven't been to see that sweet group of mito people in a long while. It was nice to get to visit with them. Dr. Tyler Reimshil spoke about the scientific/medical side of mito. Sonya Murray spoke about the nutrition and pain management segments that she attended as a parent. I enjoyed to recap and plan to sit down when I have time and listen to the symposium segments posted on their website.

ahhh...summa time!

We have had sooo very much going on at the Culley house lately. Elizabeth graduated from 5th grade, Wesley turned 9 and Mom retired from 29 1/2 years of teaching.
Jack, overall for a 5 year old with Leigh's, is doing well. It has been a year since our last hospital stay. I am super excited about this accomplishment. It has been with great sacrifice and my sanity but I have kept Jack home alot this past fall, winter and spring. This past fall, winter, spring was the healthiest ever for Jack. He was on antibiotics a few times and for a awhile but he did not have to go to the hospital. Jack is continuing to grow and change so very much. He weighs 47.6lbs. and is 43 1/2 in. long. He wears a size 6 and likes to wear some of Wesley's size 7 handme downs. At our last Dr. Morgan visit we had to increase some of his seizure meds because of his growth. We were seeing an increase in the strength, frequency and duration his myoclonic jerks. It's a balancing act. We went to see Dr. Joshi. He is our Memphis cardiologist. Jack had not seen him since he was about 15months old. I needed him to be updated on Jack's cardio status and get on Jack's team. He is willing to work with Dr. Moulik in Houston and was confused as to why I went to Houston to seek care especially since Dr. Wheless was in Memphis.  I told him I thought Dr. Wheless was a very smart man and good doctor but he does not work well with others. Jack's mito care takes a village and I am the mayor. I can't have any one in the village not willing to play nice with others. I also told him Dr. Koenig sees Leigh's patients every week/month in clinic. Some Memphis doctors see maybe 1 or 2 their entire career. I told him I want Jack to receive the most up to date mito care as possible and (for Jack) that was in Houston not Memphis. Dr. K's office actively helps recruit patients for research and she is also involved with the UMDF. He understood and didn't ask any more questions. I wonder why...

Elizabeth is exicited and nervous to be starting middle school. She is zoned to go to Woodstock middle.We do not think it would be an appropriate learning environment for Elizabeth. We asked for a transfer to Arlington Middle. We did not get our transfer to Arlington Middle. It is one of the top middle schools in the County system. I was very angry and disappointed. John and I are considering all our options for August. We will have to make decisions soon about what to do about middle school for Elizabeth. Homeschool advice anyone?

Mom retired this year from teaching. We are super excited about this news!!!! People have asked me "What will your mother do with all her time now?" I reply "Whatever she wants!"  She is planning on being with Elizabeth, Wyatt, Wesley, Ava, Jackson, Mason, Harrison and Charlotte as much as they can stand.  Congrats Mom!

Thank you!!!!

Can I be honest with yall? I was extremely worried this year that the race would not be successful. I was worried because of severl reasons. First, the economy. People are out of work or their hours have been cut back and gas is almost $4 a gallon. (OMG!!!) Money is tight all the way around. Second, I was worried because I thought people have heard about mito, Jack's struggles and it's old news.  I found out Saturday that I was wrong to worry and think those things. You guys ROCK!!! Yall really came together for Jack and I am truly grateful! The last total I got was $14, 600. Since this race started wehave been able to give the UMDF $60,000. Can you believe it!!! It gives me so much hope that a cure/treatment will be available one day!!! Sometimes, as Jack's mom, I feel so powerless aginst mitochondrial disease. There is nothing I can do to make Jack better. There is not any over the counter, prescription, alternative medicine I can buy to make him better. I am powerless to make his seizures stop. I am powerless to stop Leigh's. If there was a cure I would have found it by now. I have had endless internet sessions hunting for some obscure, rare mitochondrial disease cure. Holding this race  makes me feel powerful for one day. Race day is a day that I feel that a treatment is a possibility. A BIG Thank to everyone that donated and participated in Jack's race. It was an unbelievable success again!

You may be wondering why did it take Emily so long to tell us about the totals and race day. Jack had a VERY EXTRA Busy race weekend. Friday night he was at McAlister's for packet pick up, Saturday he got up early to go to his race. After the race Jack went straight to bed for rest. Sunday, Jack woke up happy and full of energy so he went to church. Sunday night, Jack had a one of his seizures in his sleep where he stops breathing. He was very tired on Monday. He slept most of the day on Monday. He was still tired on Tuesday but slept less. He rested the reat of the week with Ms. Charlotte and I watching closely. He worries me so very much when he has grand seizures. Worrying about Jack is worry like no other.  It is a worry from deep in my soul. The constant worry rarely leaves me alone.

I took Jack to his Memphis cardiologist today. It was suggested to me that we keep one here in Memphis well infomed and on Jack's team. That sounded like good advice to me so I made an apt. He said he would be happy to work with Dr. Moulik in Houston. Jack's heart is doing fine. Jack had a full cardio work up in Jan. He said he would review the doctor notes and test results from Houston. I told him I wanted to stay on top of all things cardio with Jack. Mitochondrial disease is sneaky. He agreed. He wants to see Jack back in Oct. for another full cardio work up. It may end up saving us an apt time in Houston. We'll see...

This fall...

Dear family and friends,

Thank you all so much to those that have already signed up for the Mito What? 5k. Your support these past 5 years through this mito journey have meant so very much to me. I always treasure your kind words and prayers. This race means so much to me. It gives me hope that a cure or treatment will be found one day when I see so many people coming together on that day.

When Jackson was fist diagnosed with Leigh's John and I were absolutely devestated. We had no idea what was ahead of us.The day in November that Jack was diagnosed with Leigh's,  I remember telling John that I haven't even planned his first birthday party and now the doctors are telling me I need to plan his funeral. It was a heartbreaking time. I am grateful to God for every smile Jackson has because there was a time when Jack didn't smile. I am grateful to God for every moment I have with Jack because I never know when Jack's life will end. Even though I am so grateful for Jack's life there is the reality that Jack has never talked, walked or even played with a toy. There are so many milestones of childhood that Jackson will never experience. It just completely breaks my heart. This fall Jack won't be going to Kindergarten. I will never hear Jackson recite his ABC's,123's or his phone number and address. Jackson won't be star of the week and make a poster with photos.  I will not pack a snacks and send milk money for him. This fall I will not be buying big crayons, fat pencils or even a nap mat. He won't be picking out a new lunch box and backpack to go to school. I always enjoyed watching Elizabeth and Wesley struggle with this decision. I won't have that pleasure this fall. I won't even get to cry when I leave him on his first day of Kindergaten like I did with Elizabeth and Wesley. Instead, Jack will be at home having his diaper changed, enduring physical therapy sessions so his muscles won't atrophy, be on continuos oxygen to keep his O2 levels up, have formula poured through a tube into his stomach to keep him nourished. Jackson will have to be continuously repositoned to avoid skin breakdown. He will have his temperature checked rectally every hour to make sure he temp is normal. If his temp is not normal and he is overheated he will have to be cooled down with icepacks and cool rags. His brain can not regulate his body temp. He will be lifted in/out of his bed, wheelchair, bath chair, stander and carseat. Included in Jackson's physical therapy sessions (which are twice a day) are stretching sessions for his arms, legs, hips and rib cage. He gets strapped into a stander and stands for 45 min to help his internal organs, leg bones, pelvis and spine. Jackson will endure 25 minute or longer chest percussion treatments 4 times a day, just to keep his lungs pneumonia free. He will be going to the neurologist, cardiologist, pulmonologist, GI, immunologist,allergist, kidney specialist,  physical therapist, occupational therapist, speech therapist appointments this fall and as long as he lives. Jackson will be hospitalized and will have IV's when his temp is 101 or greater. He will be pricked for bloodwork this fall and the rest of his life. This fall Jackson will be learning to communicate with a switch. This fall I won't be writing notes to Jackson's teacher. I will be writing letters to insurance companies begging for them to cover the cost of Jackson's needs.

So with all that said I am begging for your participation in the Mito What 5k. You don't have to run (I never run anywhere)! Just register and get a shirt. You can raise awareness just by wearing mito fashion. I am begging from the bottom of my heart.