He is getting new wheels and eating beef jerky

Zander was fitted for his wheelchair on Tuesday. Jamie said they used a household tape measure to measure his legs and body for the dimensions of the chair. It is the elite model. This is the newest model of wheelchair available. It will be blue with metallic paint so it sparkles. The seat will come out and fit in a box. This will allow him to sit in the seat and play on the floor with his brothers. It will also be valuable for physical therapy. It also has a feature that I never knew existed in wheelchairs. It has the capability of also rocking like a rocking chair. This will be nice so that she can rock him when he gets fussy. He should have the chair in three to four weeks. It is specifically designed for him and is upgradable as he gets older. It should work until the age of 5 depending on how fast he grows and changes.

The Mayo Store is currently working on his bath chair. It is similar to a recliner. It will help to support him while Jamie bathes him. She isn't sure when it will be done. I hope it is done soon.

Zander had a great day at physical therapy. They are now working to get him to clap. They are trying to teach him how to clap and play Patty Cake. I am a talented clapper. I will work on clapping with him while he is back.

The therapists are also trying to help him to transfer over to being able to eat solid food. They are doing this by allowing him to chew on beef jerky sticks. They are using the jerky to get his tongue used to having solid food in the mouth so he doesn't choke. It also teaches it to move to the left and to the right depending on where the stick is placed in his mouth at the time.

I think that "Auntie A" will have to go stock up on Slim Jims for the little guy when he is back. Don't worry, I won't start off with the hot spicy jerky. He has to work up to that.

Jamie has also bought him an electric toothbrush. It helps to stimulate his gums. It also helps to get him to accept items in the mouth easier so that he doesn't choke as bad. The drawback with these activities is that he is slobbering more.

Jamie is also working on getting a handicapped sticker for her vehicle because of the wheelchair. I am not sure what the process is for this to take place. She is fortunate that she has a van. I do not know how large the chair will be. I will post pictures when he gets his new wheels.

Thank you for all of the prayers during this transition time for Jamie and Zander. God hears our prayers. He has a special plan for ZZ. We may not understand it right now, but we will someday.

Rough Night After Great Day

Zander had a pretty rough night last night. He woke up coughing around 12:30 a.m. Jamie sat up with him in a chair until about 3 a.m. He woke up again at 6:30 a.m. coughing. Jamie stayed up with him. She said he didn't want to eat today and this isn't typical.

He gets fitted for his wheelchair on Tuesday. A brother and sister team is coming down from Minneapolis to fit him for his wheelchair at Mayo. If I understood correctly, the team makes chairs for the Shriners. ZZ should have his chair in about 6-8 weeks. I will post information on how they fitted him after I talk to Jamie.

It will be a tough day for Jamie. Mom and Dad won't be able to travel to Minnesota to be with her this week. Please keep her in your prayers.

Zander was able to sit without assistance for 7 Seconds today

Normally when Jamie calls about Zander, it isn't good news. However, today she had amazing news. You could tell in her voice that something positive had happened. Zander sat up for seven seconds. I would imagine that you think seven seconds isn't a big deal. However, to us, seven seconds is an eternity for him to sit up. It is the little moments of accomplishment that we cherish.

Zander isn't able to sit up by himself without falling over. His condition leaves his muscles extremely weak and unable to help support him when he is sitting. He typically falls forward with his face touching his knees. When I was with him at Easter, he couldn't hold himself up. I had to help support his body when we played on the floor.

This is what my sister posted on Facebook regarding his accomplishment, "Yeah, Zander sat up on his own for 7 seconds. This is the longest he's sat by himself. He did it with a huge smile on his face!!!"

Zander did it with true Zander style. He is always smiling. This accomplishment is making his Auntie A smile a mile wide with pride.

Myastania Gravis is Scary

The more that I hear about Myastania Gravis it scares me. There are children who have been lifeflighted 10 times in 20 months of life. Myastania Gravis is a mean, mean disease. I pray that a cure can be found.

This is why organizations such as as the Myastania Gravis Foundation are crucial. People are working together to find a cure.

If you are interested in helping find a cure for this disease, please support my nephew, Zander, and other children like him. You can do this by sponsoring my sisters at the National Conference in St. Louis. There is a 1 mile walk that they are going to participate in. They are needing sponsors.

If you are interested in sponsoring them, please contact me at angelab349@yahoo.com for more information or at the Myastania Gravis Foundation website at http://myasthenia.org.

Photos of Zander

 
 
 
 

Zander will be fitted for a wheelchair

I was notified today that Zander will be fitted for his wheelchair next Tuesday, April 27. This wheelchair should accommodate his needs up to the age of five. His appointment is in the afternoon. I am not sure how they personalize the chair to meet his needs and growth over a span of 4 years. This just amazes me. It will not be motorized as far as I know. If I find out that it is, I will make a correction.

At this time, they will also customize a bath chair for him. Bathing Zander is getting very difficult for my sister. He weighs 30 pounds. The way that I understand it is that the chair is similar to a recliner in design principle. It will help support him while Jamie bathes him.

In-House Physical Therapy and Choking Episode Today

Zander is having an ok day from what I have heard from my parents. He did have a chocking episode earlier in the morning. I don't know if it while he was asleep or awake. It doesn't really matter when I guess. It was still an episode. My folks said that he had lots of smiles for PaPa and MiMa.

Zander qualifies for in-home physical therapy and out-patient therapy at Mayo in Rochester, MN. I believe that the in-home therapy is arranged through the school district in Dodge Center, MN. The in-home therapist came in today around 1 p.m. I think my parents were still there. I am curious to know what they thought of it and what they observed him and the therapist do. I pray for any progress.

Jamie, his mom, probably has an ulcer. She is under so much stress. She isn't sleeping well either because she is afraid she won't hear him if he chokes during the night. It is a very scary and serious situation.

I am praying that when my sisters attend the conference in St. Louis that they take information back that can help Zander. His eye doctor is going to be presenting at the conference. From what I understand, there will be other parents there who have kids like Zander. Perhaps, they can offer insight on how Jamie can help Zander. His family doctor wants Jamie to bring back as much information to her as possible. She isn't familiar with his disease. However, she wants to learn and isn't afraid to reach out to other doctors who do. She has a heart.

For those who do not know Zander's mom, Jamie and my baby sister, she is a red head that is very stubborn. She will fight tooth and nail for what she believes in. She believes in Zander and she believes in the fact that she is strong enough to help him achieve to his fullest potential.

Zander is having a better day!

Zander is having a better day today! Thanks for all of the prayers for the little man. He has a tough road ahead, but he has Bush blood in him. He will win!

Some very good friends gave Jamie some clothes for the boys. Melissa and I are getting them ready to send to Minnesota. I wish I could go, but I can't. I have school this week. However, school will be out soon.

Thanks again for the prayers for Jamie and Zander. They do help. God hears our prayers and he is good!

Mom is with Jamie and the boys

Mom is at Jamie's. She and Dad went up at 6:30 Wednesday night. They got up there around 20 til 1 in the morning. Mom and Dad are getting to the point that they put the van on auto pilot and it knows how to get there on its own. Dad, however, turned around and came home early Thursday morning so he could be home for my sister's twins' minor surgery on Friday. There is never a dull moment in our lives.

Thursday night Mom set up with Zander because he was choking. Mom slept in a recyliner with him. Some nights he is able to sleep lying down and others he isn't. It is pretty tough on the little guy.

Mom will be coming home on Monday.

ZZ is starting to turn a corner

Zz is starting to turn the corner. It was so scary for Jamie to see him so sick. He ended up having an was upper respiratory virus that put him in the hospital. I hope this doesn't happen everytime he gets sick.

Zander Information from Tuesday night (April 14)

Zander's fever finally broke this evening. I actually got to talk to him on the phone. I know this sounds crazy, but I did. I talked to him and told him I loved him. He just cooed. I told him that he had to get better so that I could take him mudding next month when he is with me. I told him he couldn't tell his Mommy. This was our little sectret :-)

Jamie sounded exhausted. She has been through so much.

Mom and Dad didn't go up this time. They were prepared to leave at a moments notice. This is how our family operates regardless if you are literally down the road or 6 hours north. Dad has made the trip through hail storms, tornadoe warnings, blizzards, and ice storms. He is like the mailman. Regardless of the weather, he will get to Minnesota and to my sister and nephews.

Thank you for the prayers for Zander. I will post an update tomorrow on how he is doing.

Zander is in the hospital

I got a phone call this morning that Zander had been taken to the ER. He was running a 104 degree fever. There was concern about him going into Myastania Gravis Crisis. This is when the respirtory system gets extremely weak and then this causes them to have difficulty swallowing.

There were so many people praying for Zander today. My family is blessed to have such great support from family and friends. Jamie had a great friend, Carrie, bring her lunch today and stay with her. It is great to know that she has friends in Minnesota who are there for her since I am 6 hours away.

Zander's fever finally broke this evening. I actually got to talk to him on the phone. I know this sounds crazy, but I did. I talked to him and told him I loved him. He just cooed. I told him that he had to get better so that I could take him mudding next month when he is with me. I told him he couldn't tell his Mommy. This was our little sectret :-)

Jamie sounded exhausted. She has been through so much.

Mom and Dad didn't go up this time. They were prepared to leave at a moments notice. This is how our family operates regardless if you are literally down the road or 6 hours north. Dad has made the trip through hail storms, tornadoe warnings, blizzards, and ice storms. He is like the mailman. Regardless of the weather, he will get to Minnesota and to my sister and nephews.

Thank you for the prayers for Zander. I will post an update tomorrow on how he is doing.

Myastania Gravis Conference and Walk

Jamie, Zander's mom, and my sister, Melissa, will be attending the Myastania Gravis National Conference in St. Louis, MO May 5-7, 2010.

There is a fundraising walk that will be held on Friday, May 7, at 7:15 a.m. It is a 1 mile walk. They will be walking in honor of Zander. If you are interested in sponsoring them in honor of Zander, please go to the following site.


http://myasthenia.org/

Once you arrive at the site, click on the following link and it will take you throught the steps on how to sponsor Zander.

Register or sponsor someone at the National Conference Run/Walk/Sit-a-Thon

My family greatly appreciates this. The money raised will go towards research to help children like Zander.

I will post updates about what they learn while in St. Louis. Jamie and Melissa will have the opportunity to meet parents of children like Zander and to get advice and information on how they handle the situation.

Melissa and Jamie will be attending different seminars while at the conference so that they can obtain as much information as possible.

My parents and myself will be watching Walker, Isaak, Zander, Jeremiah, and Nathaniel while they attend. This will be during the week of finals for myself. Please pray for safe travels as Jamie comes home from Minneosta and for Melissa and Jamie's travel to St. Louis and back. Also, for the sanity of myself and my parents. The kids out number the adults.

What is Myastania Gravis

I know that Myastania Gravis is a mouthful. I went to the Myastania Gravis Foundation website and found information that helps to explain what Myastania Gravis is. It is a lot to take in. I am still having difficulty and my sisters, who are both nurses have tried to explain it to me.

The following information comes directly from the Myastania Gravis Foundation website http://myasthenia.org/amg_whatismg.cfm



Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction.

When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there is as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site.

Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction.

Common symptoms can include:


A drooping eyelid
Blurred or double vision
Slurred speech
Difficulty chewing and swallowing
Weakness in the arms and legs
Chronic muscle fatigue
Difficulty breathing

Zander's Condition From an Aunt's Perspective

Congential Myastania Gravis is a monster that has attacked my nephews body. It is a mouthful for an adult, let alone a one year old boy who coos and smiles. I hadn't even heard of it until last year when a cousin's husband was diagnosed with it. He had droopy eyelids. I assumed that this condition was just for older people not sweet little boys.

I am your typical aunt. I love all five of my nephews and I have a special bond with them. I take them mudding, buy them toy tractors and the implements that go with them. I take the older ones to tractor pulls and rodeos when they are in town and there are events close. I have even been known to take them fishing at the neighbors. However, this activity doesn't last very long because at the ages of 5 and 3 they get bored rather easily. They would rather throw rocks than cast a line out.

This is why it is so hard to watch Zander have Congential Mystana Gravis. I wonder if I will be able to take him fishing and fishing, and to rodeos and tractor pulls. I feel like I will be able too, at least I hope I can.

It tears me up to hear his older brothers ask the questions that cuts to the core. "Mommy, why doesn't Zander crawl like the twins, my other sister's two boys that are only two days older than Zander?" It brought tears to my eyes when I saw Jamie wipe the tears from her eyes last week. Then, I heard Walker and Isaak ask things like, "Why can't Zander walk like Jeremiah does?" It makes me want to cry for Zander and my sister. I can't cry in front of them. I have to be brave for my sister.

Last Monday, I got to watch Zander while my sisters went and got their hair done. Jamie is only away from Zander while she is at work. For her, this was an opportunity to relax. For me, it was a gift. Zander and I had several talks. I told him that he has to be strong and fight. He has to push himself at physical therapy so that he can chase the girls on the playground when he gets older. He just gave me a grin. We talked about horses and Max, the four-wheeler. I told him when he was big, like maybe 2, I would show him how to start and stop it. Then, when he is 4 I would let him drive it. I put him down for nap after our conversation.

At 11:00, I went to check on him. His eyes were open and they followed me as I walked into the room. His eyes had so much spark. He tried to show excitement. You could tell he was excited to see me. He was able to wiggle his toes and lift his feet off of the ground a little bit, but he couldn't lift his arms. This is when his tough ol aunt broke down and cried. I hadn't cried in a long time. I am not that type of "girl". I just held him and cried. I don't know how long I cried. After a while, I just got up and wiped my eyes.

At 11:30, I gave him the syringe full of Mesatonin. This is suppossed to help perk him up. It is suppossed to help the communication between the brain and the muscles. It usually does, until it wears off. Jamie gives it to him three times a day. It helps make him more active. When it is in him, he is able to sit in a bouncy chair and bounce like there is no tomorrow. However, when it is out of his system, he is like a ragdoll.

Please remember Zander and other children like him in your prayers. Pray for medical treatments that make movement possible so that they can experience life to its fullest.

Zander's History from his Mommy, Jamie

Zander joined our family on April 6th, 2009 weighing in at a whoppin 6 lbs 12 oz. He was a dream baby. He didn't fuss and slept great. About 6 month ago, we noted he wasn't meeting the "standard milestones" He hadn't rolled over, couldn't sit up, etc. He was also getting a lot of upper respiratory infections and low grade fevers. We also noted he had a "lazy eye", and it would come and go. It was worse when he was tired or sick. Our primary doctor was great about getting us into different doctors. She had us see an eye doctor, who had noticed Zander's history. He had asked if "Myasthenia Gravis" was ever mentioned. I said no. He had explained that he had just a paper/book on the eye portion to MG, and that Zander had a lot of the characteris​tics of this disorder. He referred us to a neurologist.​ She too was concerned about it. Zander underwent a long day of testing. He had tubes placed in his ears, muscle stimulation (EMG), and bronchoscop​y. The EMG was essentially normal. The neurologist referred us to a muscle specialist. Dr. Selcen. (She's fantastic) She to was afraid that he had congenital myasthenia syndrome. She started him on a medication called "Mestinon". Within 3 days of the medicine he was rolling over. Wow. We were excited. Fast forward to NOW...3/31/​10. Zander was taken off of it for a short period of time, and began to backslide (aspirating​, decreased movements, lazy eye). On Friday 3/26/10 He was started back on the mestinon. He is finally back to moving or "jumping bean". He bounces on your leg or in his exersaucer like a jumping bean. He gets PT/OT weekly at home and/ or at the clinic. It was decided that Zander's needs are increasing. Giving him a bath is very difficult because he is unable to support himself at all (did I mention he's 29 lbs). So he's an armful as well. It was decided that he should be fitted for a special wheelchair/​seat that reclines & sits up in order to better help him and me. We will see the PT doctor today to confirm his needs. He's also getting a shower/tub chair. I just want what's best for the little man. He has become the heartthrob of everyone at therapy because he smiles at everyone. Zander turned 1 on Tuesday, April 6th. I hope this year is a good year, and he makes huge improvement​s.