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Thursday, March 31, 2011

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.

Thursday, March 24, 2011

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?

Thursday, March 10, 2011

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.

Tuesday, March 1, 2011

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!