Catch up 2

1-16-2010
Things are so crazy physically, emotionally, and spiritually. I am worn down all the children being sick this week and doctors appointment have made me very tired and next week is the same. I have to take John to see Dr. Little tomorrow, Sam has his 18mo on Monday, I have to sign the TEIS papers on Tue, than we have John's pulminary appointment on Wed. I wouldn't trade anything but I am tired. Emotionally, the continuing bad news with John gets to me. Made it a pretty emotional day. Spiritually, I pray and pray and sometimes it feels like they are falling on deaf ears. In my heart I know they are not but I get so discouraged. I guess I just need to pray harder.

1-20-2010
I am worried about John. He woke up this morning having a rough day.I need to call Dr. Sharpe about his increase in grand mal seizures. We don't know if it is due to him being sick or his meds aren't working again. I am going to start working on his Make a Wish scrapbook this weekend. He loves looking at those pictures. I can't wait until we go back to Give the Kids the World and see his star. My only prayer is he is with us. Todd and I have faith he will be. It is just scary when he is sick. Hopefully we will get good news this afternoon.

1-23-2010
I have been working on John's Make A Wish Video and a video for the boys. It is hard not to have bittersweet feelings when working on John's. He is so happy but then you remember the price he has had to pay to make his wish happen. He is such an inspiration to so many people. I can only hope I can touch half as many people as he have in such a short time. Sam is so much like him and yet so different. Sam and John are both miracles. Sam was a complete surprise. He came after we got John's diagnosis and the doctor advised us not to have anymore children. John by all accounts shouldn't have been with us past his first birthday but he is still here fighting. God has been touching us everyday with our boys. When my faith is shaken I just look at them and remember all that he has done.

3-9-2010
Today I am a little blah. I think it may be the rain. The rest of the week will be busy. At least it will keep me busy. I wonder why I have so many veiws on my blog but I only have two friends. Whoever is reading I hope you are enjoying it. A few quotes are bouncing around tonight. 1. "I guess sometimes there just isn't enough rocks."-Forrest Gump and 2. "God doesn't put more on your plate than you can handle." Both are so true. God has always brought me through anything that is going on and I have faith that he will continue to do so. I thank Him so much for things he has done in the past and is doing in my life right now. He has allowed John to improve when just six months ago we really didn't feel that he would see his 5th birthday. He has continued to provide for us so I could stay home and take care of the boys. Granny Layne is still with us for now when just last week the family got together to make the choice to allow nature to take its course. Thank you Lord for all that you are doing not just in my life but others as well.

4-6-2010
Usually I handle John Ryan's disabilities with a smile and a cheer for every milestone that we do accomplish. Today I had one of those moments that set you back to the beginning when it seemed progress will never take place. I had to go to John's school for a parents meeting for his upcoming admission to kindergarten. As a set there with all the "typical" parents I just wanted to scream! I wanted to go hide and cry for all the things my precious baby boy will never be. I allowed for a moment all of his accomplishments to be thrown away by what a school system deems necessary for my child to be able to do. Now that I have shed my tears I am refocused on what we can do again.

5-2-2010
Today we had an amazing sermon at church. It was dealing with when the storms come along even the most dedicated Christians ask God "Don't you care?". I look through the storms throughout my life and am in awe at the way he has brought me through them. It may not be in my time frame and I may not know why but I know now that it is His will. I have to remember these times when the next storms develop in my life. I have to trust that He will see me through and not focus on the storm but the fact that I am not between a rock and a hard place but between two good places. If I make it through I am that much better off and if it kills me I will be with Jesus! Thank you Lord for carrying me through the storms of my life.

5-11-2010
Well our appointment in Lexington with Dr. Milbrandt went like I expected which wasn't good. John's feet are starting to turn back in. We are going to have to be in AFO's starting in June(We got measured for them today) for six months. This is bad because even though most children are able to walk in them John will not be able to (they think) because of his texture issues. We did pick out a cute Spider-Man pattern though. If in six months his feet are still turning in they will have to do reconstructive surgery. So from Jun 7th to at least Nov 9th John will have to use his wheelchair all the tim. :( We have made so much progress something like this could set us back 2yrs worth of work. But John is a tough little cookie and we will make this work.

5-13-2010
John's appointment in Atlanta went ok. We got good news and some blah news. John did great for his tests. He only cried once for the spinal tap. We were so proud of him. John's disorder is progressing. We have to start seeing the mito doctor every three months. They are going to put John on a betablocker for his tempature instability and heart issues. We have to have a neuropsych test to see how John's disorder affects his behavior in school and home and how we can better help him. There is a new drug that they have tried in Leigh's disease patients with some success. They are trying to get the FDA's approval to try John on it. So we will see.