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Monday, February 28, 2011

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.

Tuesday, February 22, 2011


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 or jusy check in on things at

Friday, February 11, 2011

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.

Monday, February 7, 2011

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 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'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 to register. Also, for updates about the race 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!

Wednesday, February 2, 2011

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.