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Sunday, April 10, 2011

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.

Wednesday, April 6, 2011

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.