Zander's Wheel Chair

Jamie has received word that Zander's wheel chair will be here on June 22 at 1:30 p.m.We are excited for his new wheels. However, with God all things are possible. This is true. God has provided great physical therapists who are working hard with Zander. He is making improvements.

Jamie has a handicapped permit as well for Zander in the works. She does have the temporary permit.

Improvements at Therapy

Zander is showing more signs of improvement at physical therapy and home.

Jamie said that he is now sitting up for about 20 seconds unassisted before he falls. This may not be a big deal to some people, but to our family it is huge.

At physical therapy, they put him in the crawling position. He was able to support himself for a little bit of time. They also held him up in the standing position and he was able to stand assisted for a little bit as well. When I say a little bit, it is probably 30 seconds. He hardly ever whimpers when he does his therapy.

Thank you for the prayers for Zander.

Good Days for Zander

I am pleased to report that Zander is getting a little stronger each day. For us, stronger means being able to sit up longer, rolling around more, and using both legs to bounce in his saucer.

Each little bit of improvement is encouraging.

Zander's shower chair is finished. Jamie will pick it up Monday. I pray that it helps both of them.

Thank you all for praying for Zander and Jamie. The prayers are working.

Answer to a Prayer

Jamie received some good news this week. Zander's wheelchair is being taken care of by insurance. This is such a relief. God has answered a prayer for us.

I am Seeing Signs of Progress in Zander

I enjoyed getting to spend the week with Zander even though it was finals week at college for me. When I wasn't studying, him and I would play on the floor. He is getting where he can sit up a little bit longer on the floor without losing his balance. He may be able to sit for 15-30 seconds before he starts to topple over to the front or the back. This is major progress.

He is also giving fives. If you stick your hand out, he will give fives to you. He is able to do this with both hands.

He is also very active in his bouncy chair. He is really favoring one leg over the other though when he jumps. He tends to use his right leg more. However, he can do it for longer time periods. He is also enjoying the toys that are on the bouncy chair.

I also tryed to get him to "stand" on my lap. He was able to do it longer before his legs would fold underneath him. This just shows that his body is getting stronger.

When Jamie was at the conference, she learned that kids with the congenital form of Myastania Gravis can walk. However, it is delayed. If they are able to walk, it occurs in the age range of 3-4. We will never give up hope that Zander can walk. God works miracles every day.

Zander has Bush blood running through him. This makes him naturally stubborn, bull headed, strong, and determined. With the support of his Mom, Grandparents, Aunts, and Doctors, Zander will be able to accomplish great things. I believe this will all of my heart.

With God ALL THINGS are possible.

Conference Week

Jamie and Melissa attended that National Myastania Gravis Conference in St. Louis. Jamie was disappointed in it because they didn't talk about Zander's form very much because it is so rare. They focused on the autoimmune form. Zander's form only effects 1 in 1 million births.

Zander's is genetic based rather than the autoimmune form. Zander's is caused by mutations in the genes. She likened it to a child with Downs Syndrome. There were problems with the genes. They are having a hard time narrowing the genes down that have the mutations in Zander's case. They have ruled out seven possible genes that could have mutated. If I understood correctly, these are the seven worst forms. They are still trying to determine which genes are the problem.

There is so little known about the congenital form of Myastania Gravis.

Jamie walked in the fundraiser in honor of Zander.

Like any event, there are things that happen that are so funny that they must be shared. If you know my sisters, you know that Melissa and Jamie are 13 months apart in age and are like two peas in a pod. Melissa and Jamie were attending a conference dinner this week. They were talking to this mother and daughter from out of state. The mother turned to Jamie and asked "Is this your mother?" Melissa quickly piped up. "No I am not her mother. I am her sister. She is only 13 months younger than me." Needless to say the mother didn't say much during the rest of dinner and Jamie didn't let Melissa forget it. When she got home she kept calling her "Momma".

National Myastania Gravis Conference This Week in St. Louis

Melissa and Jamie are heading to the Natinal Myastania Gravis Conference in St. Louis. They left early this morning. They are attending a dinner tonight for those who are in the medical field.

Melissa is a nurse practicioner in Kansas City. Jamie is a cardiac nurse at the Mayo Clinic in Rochester, MN.

They will be sharing with me each evening about their daily activities. I will update the blog with the information that they provide me. From what I understand, Thursday will be the biggest day of medical information. They will be attending different sessions so that they can obtain the most information possible. They will have the opportunity to talk to parents of kids like Zander.

I hope that this conference will give Jamie encouragement.

On a happy note, Zander is able to give "fives" now. He can do it with both hands. I can stick my hand out and he automatically knows what to do. Needless to say, I have been asking for a lot of "fives".

Zander is home for the week

Zander, Walker, Isaak, and Jamie are home. Jamie came by Missouri Western State University so I could see the boys this afternoon. I have a night class tonight and I won't be home until after 7:45.

I opened the door to the van and he gave me the biggest smile and started to talk to me. He started to kick his feet with excitement. He then put his arm on mine. I gave him a kiss on the forehead and he just grinned at me. We "talked" for a minute. I told him that I would see him tonight and he just started kicking his feet some more. It was so good to see him smiling at me.

Jamie and Melissa are heading to the National Myastania Gravis Conference tomorrow morning in St. Louis. I will get to spoil "my boys" rotten this week. The four-wheeler is gased up and ready to go mudding. The mud hole is overflowing thanks to the rain last week. I think Zander may get his first taste of "mudding" while Jamie is gone.

National Myastania Gravis Conference This Week

Jamie and Melissa will be attending the National Myastania Gravis Conference this week in St. Louis.

This conference will give both of my sisters access to the latest information on Myastania Gravis. There will also be parents of children like Zander at the conference. This conference will hopefully put Jamie in contact with parents who understand what she is going through.

While looking over the agenda for the 2010 MGFA National Conference, I was excited to see that there will be a lot of different breakout sessions for what Zander has. There will be a session led by one of Zander's doctors from the Mayo Clinic.This helps reassure me that my nephew is getting the best care medical care possible.

There will also be discussions led about the latest in medical treatment and the experimental treatment that is going on.

I am looking forward to hearing what my sisters are finding out. My sisters are so determined to learn as much as possible while at this conference. I would hate to be the panel speakers because my sisters will "pick" their brains dry. They want answers and they will stop at nothing to get them. You can say that my sisters are lions when it comes to protecting my nephews. They will fight for them until the very end. I guess you can say that I am that way too!