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!