Zander's Night

Zander had a very bad night. They had a difficult time managing his pain levels. They brought out the big guns to treat his pain. His oxygen levels are also dropping so they put him back on oxygen.

Surgery was Yesterday

Zander had surgery to remove his tonsils and do a lot of other medical procedures. Jamie, Mom, and Zander got to the hospital at 6:30. There was a communication error at the hospital. Zander was supposed to be the first case. However, he was the third case They didn't take him back for surgery until 11:15. It was a very stressful morning for everyone. I had a difficult time being at home and not knowing what was going on. Dad and my sister, Melissa, tried to update me as much as possible.

From what I gathered after the procedures and surgery is that his tonsils were much worse than anyone thought. They were blocking his airway. The lung biopsy showed that the mucus like substance was not as thick as it was the last test. The lung doctor had put him on a different medicine I believe last week to help with the mucus. We should know the results of the biopsies this afternoon.

My Mom and Jamie spent the night at the hospital with Zander. He is in pediatric ICU. He has a feeding tube down the nose to make sure he gets nourishment. He will have it for up to 3 weeks. They were going to take shifts sleeping and sitting with him.

Thank you for all of the prayers.

Surgery is Tomorrow

Well tomorrow is the day that Zander has his tonsils removed. It is just killing me to be here at home while the rest of the family is in Minnesota supporting Jamie and Zander. Mom and Dad left this morning with Jamie's two older boys, Walker and Isaak, and Melissa's twins, Jeremiah and Nathaniel.

Zander has to be at the hospital early. I am still waiting to hear what time. He had presurgery appointments today.

Here is the run down of what will be done tomorrow.

Tonsils out
• taking a 1" deep by 1" square of thigh muscle for the Myastania Syndrome test
• a muscle stimulation test for Mystania Syndrome
• scope of stomach
• scope of lungs
• lung biopsy
• hair from lung/bronchial tubes biopsy
• blood test

Please remember the little guy in prayer tomorrow.

Thanks
Angela

Upcoming Surgery

Wow. There has been a lot going on with Zander since the last post. It has been like a whirlwind. The doctors keep finding new things wrong, but no solutions to the problems that we know already exist.



Zander has gotten his wheelchair. It is really nice. Jamie has a handicapped tag now. She is able to park in the handicapped spots at the hospital. This allows her to get closer to the doors. The wheelchair is heavy. However, she is strong and can maneuver it into her minivan. It is cobalt blue with a black seat. There is a special backpack that fits the back of the chair so that she can carry Zander's diapers etc easily.



Zander has also been approved for a gate trainer. A gate trainer is similar to a walker that infants use prior to walking. However instead of plastic surround it and the infant sitting in the center, it is open and the seat is made of nylon webbing similar to what is in the base of chairs covering the springs from what I could tell. It will help Zander build his leg strength up and allow him to move forward and backward.



Here is the difficult part for this aunt to write



Zander was diagnosed with seizures. They started him on a medication and he was allergic to it. They started him on a new medicine and it seems to be working.

Last Friday, Zander had a cat scan. After 6 attempts of getting an iv started for the contrast for the ct, they decided to quit and do the ct without the contrast. It showed swollen lymph nodes in the chest and some other issues. I still haven't heard what they are.

After that appointment, Zander had an ear/nose/throat appointment. They put a camera down his nose and looked at his tonsils from the top side. They did not put him out to do this procedure. They sprayed mist into his nose and waited a few minutes and did the test.They determined that they have gotten larger since the last appointment. They are going to take them out on July 21. This appointment lasted 3 hours. There were several different people who came in to get information regarding Zander's history of what is going.

It was determined that Zander is going to be a very difficult case. There are several different groups at Mayo who will be involved during his surgery time. Neurology will be conducting Myastania Syndrome testing. GI will be scoping his stomach. Pulmonary will be doing several tests as well. Then, ears/nose/throat will remove his tonsils. They are going to try and leave the adenoids. This will help prevent food from coming out of his nose given his swallowing problems.

From what I gathered here is what is going down on July 21.
• Tonsils out
• taking a 1" deep by 1" square of thigh muscle for the Myastania Syndrome test
• a muscle stimulation test for Mystania Syndrome
• scope of stomach
• scope of lungs
• lung biopsy
• hair from lung/bronchial tubes biopsy
• blood test

Zander will be going into Pediatric ICU following the surgery. He will have a feeding tube inserted into his nose and into his stomach following surgery. He will have this for up to 3 weeks. They are doing this to maintain his nutrition. His swallowing will be an issue. HE will be in the hospital for several days.

Please pray for the doctors who are doing these tests, the anaesthesiologist, nurses, Jamie, my family, and especially for Zander. This little man has been through so much and yet smiles and giggles every day. Once you meet him, he has your heart. I love my ZZ. He is an aunt's angel.

Petite Mal Seizures

Today has been one wild ride. Jamie called and said Zander was having more seizures. He is having petite mal seizures. They are similar to grand mal, but without the entire body shaking. They have been pretty serious over the last couple of days. The doctor has ordered two tests for him tomorrow at Mayo. The first is a sleep deprived test to test for seizures. Zander will get up at 3 am and not be allowed to go back to sleep until after the test. The second is for his heart. He then will meet with the neurologist tomorrow afternoon at 1 p.m.

Jamie is very scared. She wanted Mom and Dad to come up and they wanted to be there for her. They decided to head to Dodge Center around 4 p.m. this afternoon. I stayed home to take care of the farm and the twins while Melissa is at work. During the course of the evening, I received a call from a friend of mine saying that there are tornadoes in Minnesota. Jamie had said that the weather was really bad. She was losing tree limbs out of her yard around 4 p.m. because of high winds.

From 7 p.m. until a around 9:30, I played junior meteorologist for both my parents and Jamie. Jamie was in the bathroom from about 7:15 until 9:15 ish. Mom and Dad needed to know where the storms were for their trip to Minnesota. I had radars up for Northern Iowa as well as the Rochester, MN area. Jamie even called and asked me to bring up the local TV station site. This really helped because I could direct Dad in from other ways based on what I was seeing on the radar and the television reports.

During the course of event, I recognized the towns impacted because of all of the trips I have made north. Granted, I find myself sleeping through Iowa. There isn't thing else to do. When we go to Jamie's, we pass through the town heavily damaged tonight by the tornadoes. Please remember all of those in Blooming Prairie, Minnesota. They were calling for volunteers to help with search and rescue. This town is about 20 miles south of Jamie's. We may be experiencing lots of rain in St. Joseph and Northwest, Missouri. It is an inconvenience. It is not devastation. Please pray for the victims of the storm as well as the people who are involved in the search and rescue. It will be a long evening and days ahead for them.

Dad and Mom arrived safely. Jamie did have house damage, but it was minor as far as she could tell in the dark. The guttering was on the porch and her backyard is heavily flooded. However, things could have been much worse.

Please remember Zander and Jamie tomorrow as he goes through more tests. It is hard to watch a 14 month old angel go through these tests. Please remember Dad as he travels back home tomorrow. Please remember all of those who suffered loss in the tornadoes of southern Minnesota.

Update From Reaction

Zander slept for over 12 hours last night. He's smiling today, but his left eye is rather droopy. He isn't as peppy as he usually is. But continues to smile. He is already choking a little already.

Jamie and the boys are supposed to come home tomorrow and spend a few days. However, we are not sure at this point. Please remember them in your prayers.

Major set back today

Zander had a major set back due to his increased Mestinon dose. He had a reaction to it today. Our neurologist wants him off of it for at least 1 week. The last time he had to go off of it he aspirated alot. PRAYERS PLEASE!!! Hopefully tonight, as the medicine starts to wear off that he starts to perk up.

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!

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.