NEWS FROM HOME

news from home continued.....

10/21/00

Hi everyone, I wanted to let everyone know that Zachary got his power chair last week. He is doing really well in it. We had him use it around the house for about a week to get use to it. It took him a day to figure out how everything works. It works great outside in the fields; the gravel is not as good but it goes unless the gravel is too deep. Sunday we took him out to the store with the new chair. We went to Sams Club, which is like a Costco. It has really big isles. He did really well he held our hand across the street and had a mind of his own when we got into the store. He wanted to go his way so we split up. Stan did the shopping, Zack and I went exploring. He was more relaxed than I was. I was worried he would run into someone, he didn't. We just need him to look other ways than the way he is going. It will come as he gets older. After that we went to the Pumpkin Patch, he went every where he wanted to go. When it was time to leave, he saw the van and turned the other way, he did not want to go. We will have to get faster on our feet.

Zack caught his first keeper fish with Grandpa Englert. He loves the fishing part, he's not too sure on the fish itself. We went on a small vacation a couple of weeks ago; we just stayed in Missouri. We went to St. Joseph, and to Grants Farm in St. Louis. It was a great time.

Zack is doing really great, this new chair has given him freedom like he has never known. We are going to the School today to check how it will work in school. Zack will start in April, so we are now working on getting everything ready. The school has never had anyone in a wheelchair, so we will be learning together.

We also wanted to say "GO Cardinals"

We will write more later

July 29, 2000

Hello everybody,

Some new news since our last update. We traded our 4x4 pickup and have now got a full size van with a wheelchair lift. It is a Ford E-150 Econoline van with an Osage conversion. It is very nice. There are some pictures of it in Zachary’s photos album. The lift is a Braun L955SE, www.braunlift.com. DW Auto, www.dwauto.com., installed the lift and wheelchair tie-downs. Zachary’s power wheelchair is scheduled to arrive in September. We used $1750 of the trust fund to purchase the lift. The total price of the lift and tie-downs was $3895. We want to say thank you to everyone who has given to Zachary’s trust fund. We also want to thank Zachary’s Aunt Mary and Uncle Art for the $100 to get personalized license plates for the van. We will send them their change after we order them because I don’t know what they cost in California but it is not that much in Missouri. The plates we think will say "ZACKMN" we have to see how many letters we can have on a disable plate.

Zachary went to the neurologist July 6, and Dr. Connolly was pretty impressed with his progress. She has put him back on the Prednisone though. His CPK level was elevated and some of his contractures have gotten worse. She thinks maybe the MD is still active in his muscles and this will knock it back down.

The deck is done except for a ramp off to the garage sidewalk. We want to thank Zachary’s Grandpa Winkle for coming up to help work on it. It also still needs to be stained but I did buy that today.

Zachary went to Alexis Meyer’s birthday pool party last Monday evening and had a blast. We want to thank Alexis and her mom for letting Zachary borrow her battery-powered four-wheeler. He likes to ride it around the yard.

That’s all for now.

Stan

June 14, 2000

Hi everyone,

Wanted to let everyone know what has been going on. Zachary had a great time at Grandma and Grandpa Englerts when we went on vacation. He went fishing; next time he will catch a fish. He just needs to learn to leave the line in the water until the fish bite. He really likes just to reel in the line. Also he went to see the Cow's from Chicago (look in Zack’s photo album to see the cows). Then back home, Zackary was under the weather for a few weeks with a virus that hit him hard. Then just as he was getting better, a 2nd virus got him.

Zachary went to Grandma and Grandpa Winkle’s a couple of weeks ago. While Zackary was there, he met some new relatives. Zack really enjoyed meeting them. The big hit was when he got to sit on a real bull in a bucking chute. That was at his Grandma Winkle cousin's house, his name is Jimmy and his wife's name is Dawn. Zackary had a great time visiting and won't forget that day any time soon.

We have started making the improvements on the house. Step one is the deck; this will let Zack go all around the house and outside. Thanks to the help of his Grandpa Winkle we are about done.

The big thing today is that Zack will get the chance to try a powered wheelchair, called a RoBo chair. It's like a car. First we tried it outside, which was great. He realized he could go wherever he wanted to. When I asked him to come to me, he said ‘no’ and pointed the other way. Then it started to rain, we had to find a way to bring it into the house (it’s weight is 250lbs), we still don't have any ramps up to the house yet. Fortunately the sales person that brought the chair had a ramp to get it up onto the porch. When the chair with Zack at the controls got into the house it was a little scary. Zackary understood how to make it go, but stopping was a little different. He only crashed once, into the couch. With a smile on his face, he learned real fast how to make it go faster. We went ahead and started the ordering process. If everything goes well, we should have it by September. We are waiting to see how much the insurance will pay for. It cost about $16,000.00. Like I said it's like a car. To see a picture of the chair go to Zack’s photo album and take a look. The chair will also lower Zack down to the ground or raise him up as needed.

We missed his last appointment to the doctors because he was so sick, but we are back on the schedule for July 6. We will let you know want she says. Also Zackary got the funding for the tricycle. The First Steps program is donating the funds for the tricycle; we are grateful and cannot wait to get him on it. Oh yea, the other big thing is Zachary is now drinking out of a sippy cup by himself. Let you know more later.

- Saturday, May 13, 2000 at 17:30:48 (EDT)

Aunt Sue here, filling in for Mary and Stan who are off to the Virgin Islands for a week of R&R and Zack is at his Grandma and Grandpa Englert’s for a little special treatment that only Grandparents can give. So here is a note on how Zack is doing. At his last check up at the doctors he measured out at 38 inches long and every thing was OK. As you all know our Zackman just had his second birthday. He had a great time as you can see in his birthday pictures. He liked the look of the cake and all, but what he really had his eyes on were all the presents. Mary said that he passed on the cake and dove into the gifts instead. But his friend Eleda was his cake eating proxy, she had a great time digging into the cake. We also want to say Happy Birthday to his friend in Canada, Matthew. Hey Matthew, please send us a birthday picture to share. One of Zack’s presents was a fishing pole and official fishing hat given by his Grandpa Englert. Grandma and Grandpa Englert took Zack fishing last week and even though the fish were not biting Zack remembered his Mom’s advice on how to reel em in with glee. It was also reported that worms were not to be touched but crickets were OK. Zack also now really enjoys riding his tractor on the porch, Dad had to come up with a bit of special equipment in the form of good ol duct tape so his feet could stay firmly on the pedals. Mary said that they are trying to get a special type of tricycle that Zack can use that will hold him safely and he can steer on his own. They have approached the First Step program to fund the purchased of the tricycle, which costs about $200. If that does not work they are thinking of using some of the trust fund to purchase it. I believe Mary said that they should hear back from First Step sometime next week, we will keep you posted. Also they are hoping to hear if they will get some help on remodeling their home to suit Zacks needs in he future. They have a parent advocate to speak for them at the next meeting; we will also let you know what happen on that front. Mary and Stan would like to thank one and all on signing Zack’s Birthday Card. Doran and I too were amazed at all the sweet comments and well wishes. Happy Mothers Day Aunt Sue

3/14/00

Sorry it has been so long since we have updated Zachary's page. Zachary had a great Christmas; Santa was really good to him. But the next day Zachary did get the flu, he did really well once we got the fever down. They told us that the flu would be really hard on him, the doctors could not believe how good he did.

Since then, we have been running non-stop. Zachary's grandpa Englert was in the hospital until after New Years, but is doing much better now. His Aunt Sue, Uncle Doran and Cousin Katharine came for a visit which was a lot of fun but too short. Then after that we went to a rodeo, basketball tournament, and a hockey game. Zachary thought it was all great. Now we are getting ready for his birthday party. We can't believe his is going to be 2. We are just going to have a couple of Zachary's friends over for cake and ice cream.

Other than that, we have started to look into remodeling the house and checking out vehicles or if we can modify the trucks. We will know more in April after his doctor's appointment. They will tell us when he might be going into a wheelchair. Zachary did pedal his tractor the other day with the help of duct tape to hold his feet on the pedals. He loved it, back and forth on the porch with a little help from Bobbie his PT.

The weather in Missouri has been really strange. We went from 80-degree weather to 8-12" of snow. Zachary also got to go to the Zoo the other day. One of his appointments was right next to the zoo and it was so nice we had to go. It's nice when you take time to let him be a kid. We are always rushing to appointments and getting as much done as possible in a day.

I will update you after his appointment in April. He is doing great.

11/16/99

Things here in Missouri are great, the weather has been in the 80's up to
this week. Now it is in the 60's, not bad for the middle of November.

Zachary has gotten his new braces. It was a real problem getting them to
fit. They had made them wrong and they really hurt him. At first he did not
want them on and it took us about a day to show him it would not hurt any more.
Zachary has been in the brace about a week now, he is doing really good. He can
stand by himself, the next step is seeing if he can move his legs when the
braces are unlocked.

Zachary got a great report from the doctors. He is now 35" and 25lbs. He
has gained strength in his upper arms. He is reaching a little more. They
are now taking him off the prelone, it will take until Feb. for that.

Zachary is talking a little bit more. He will say ball, bubble, balloon,
daddy, yellow and la la. We are still waiting for mama.

It was really great this week, we got an e-mail from a nice family who also
has a little boy named Matthew that has Congenital Muscular Dystrophy
(Merosin Deficiency). We hope to support each other and share information.
I also went to a new group for mothers with children with MD. It was great,
there were mothers there with children that were 24 years old and newer
mothers. Its nice to see we have the same questions and others have the
answers. You also can see people that have it worse than we do.

We are getting ready for the Holiday's. Zachary went to see Santa the other
day. No pictures this year he still is not sure of that person in the white
beard. He did have his picture taken for the holidays. We will put it on
the site soon.

We wish everyone a very happy and safe holiday season.

Hello everyone,

It has been a long time so we will try to get you updated. In mid August we all flew out to Portland, Oregon, to see Sue, Doran, and Katharine. They are the folks who keep this web site up and running. We were there for a week and they took us to many places including the zoo, the Pacific coast, and Mount St. Helens. We had a wonderful time. Uncle Fuzz was there for a few days at the beginning of our visit.

In mid September Mary and Stan drove to Biloxi, Mississippi, for an anniversary vacation. While we were there Zachary got to spend a whole week with Grandma and Grandpa Englert. Aunt Jeanette also came by to play.

Labor Day has passed and of course that means MDA Telethon. Mary and Stan both collected at work and both Grandmothers got donations where they work. Over $1500 was collected in Zachary's name for the fight against Muscular Dystrophy. When we took the money to the telethon they put us on TV so we got our 20 seconds of fame.

Mary took Zachary to get his stander adjusted, it had to be increased 1 ½ inches in height, and the therapist thought it was time to also get him into full leg braces. His doctor agreed so that will be the next step to getting Zachary on his feet.

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Zachary added his thoughts.

Wednesday, Sept 29, 1999

Zachary just wanted to say 'hi' to everyone. We are trying to stay cool it as it has been in the upper 90's this last week. A lot has happened since we wrote last.

Zachary had his 15-month check up. He is now about 33 inches and weighs about 23-24 lbs. Everything is going well. He has 10 teeth in and is getting 4 more; we can't wait for them to come in. He loves using mommy as a teething ring. Zachary also went to the MDA clinic. They were really happy with his progress. He did not gain everything back in his neck or arms, but it is close. The doctor wants us to keep him on his medicine for 2 more months then we will start taking him off it. We are also loosening the straps on the stander, which will get him to hold his trunk up.

Zachary also went to his first baseball game and he loved it. We had really good seats and there was a good breeze that night. Then we went to a 2nd game on the weekend; he didn't have as much fun. It was really hot and we were as high up as you could get. Zachary fell asleep in the 8th inning. The Cardinal's won both games.

We are working on breaking him off the bottle, but we are soft, if he yells too much we give in. Not much else is happening. Vacation is just around the corner and we are all ready to go.

Write soon.

- Tuesday, July 28, 1999

Wanted to update everyone. Zack is doing much better, he has almost gain back what he lost. He is holding his head better and sitting on his own. Since the last time I wrote, Zack has had two blood test to check his CPK level it is now down to 822 which is much better than 22,000. Hopefully it will continue to go down.

Zachary cant wait his Grandma Englert is coming to watch him for a couple of days. They should have lots of fun. Not a lot happening, we are trying to break Zack of the bottle. It’s harder on us then on him I Think.

News on the house remodeling. We had our State Representative call about us being turned down. When he call the agency, they gave him other reasons, like the budget was not big enough. Also the other place were where trying, turned us down for now. The reason Zachary ages and they don’t know what his limits will be. The CWA Union has offered us $200.00, maybe more will find out on Tuesday.

I write more next week, hope everyone is doing well.

- Sunday, June 13, 1999 at 20:55:45 (EDT)

Just wanted to say hi to everyone and let everyone know what’s going on around here. Since the last time, we went to Springfield to visit Grandma and Grandpa Winkle. It was a lot of fun; we went to Silver Dollar City. Zachary got to ride his first carousel and also got to pet a lot of animals, he loved it. After that weekend things went a little downhill. Zachary was a little fussy and tired the first part of the week. We didn’t thinks too much about it as we have been on a non-stop run the entire month. But Tuesday night we were to go to a playgroup, it would be are first time, Zachary woke up from a nap and could not really hold his head up. It looked like he had a stiff neck. We just put if off that he was really tired. We stop by the playgroup, he really tried but Zachary was still fussy, so we went home. The next morning Zachary was even weaker. We took him to his babysitters, I told her I would check on him when I got to work. When I called he was not any better. It was time to call his doctor, but of course the office was closed this day. When they call me back, they thought it would be best for his doctor at Children’s Hospital to see him. So off we went down there. They took blood and the doctor came looking at him. At first they did not think it was anything major just something mechanical and it would be ok. They wanted x-rays so off we went to that department. While we were waiting for them to call us into x-ray his doctor came and found us. She had a look on her face that you could tell; it was not good news. Zachary CPK levels are really high; they went from 600 in April to 22,000. She has never seen anything like this; they had no real answers. They have changed his medicine to hope bring down his CPK levels. This now explains why he was so weak. Today we went in to get another blood test, to see if the levels went down. We will not know until tomorrow. We have a lot of unanswered questions, like what if the levels to do not go down, will he gain back what he has lost, and how did it happen? This type of MD is so rare they don’t have the answers.

Then to top the week off, the State got back to us on the remodeling of the house. At this time they will not help us, as many people with MD can walk and they do not want to spend the money until we are sure he will not walk and we can no longer carry him up the stairs. This really made us mad as they do not understand the type of MD he has or how heavy he can be when he is unable to hold his own weight. They have put us off for over 6 months wanting quotes from 3 different vendors and contractors. Then had the contractor put a price on every part of the remodeling. If they never plan on helping us they should have told us from the start, not 6 months later and a lot of work from many people. They have not heard the last of us, I will be compiling information from his doctors and also from other people that have gotten elevators and other things from the state. We will also be seeing a lawyer to find out what Zachary’s rights are.

Hopefully we will get some good new tomorrow from Zachary doctors. We will let everyone know.

- Tuesday, May 25, 1999 at 22:07:34 (EDT)

Hi everyone, just wanted to let you know everything is going great. A lot has happen since we updated everyone. Stan got Zachary’s swing up and he loves it. The weather is getting hotter and nicer here so we can go outside in the evenings and go swinging. Two weekends ago we went to the St. Louis Zoo, it was great. Zachary really liked the monkeys and giraffes. Last year the zoo remodel the children’s part, it was really great. Zack like the birds, you go into the house and you can feed them. They will sit on your shoulders and hand when you feed them.

Zachary has had a lot of first this week. On Friday he started to say dada, which made his dad very proud. This weekend we went to Grandma and Grandpa Englert’s, where his Great Great Aunt Alyce is visiting. We had lot of fun. Zachary got to eat corn on the cob by himself and loved it. Also he raised his head with a little help, he did hold it on his own for a short period of time. Zachary is now able to sit in the bathtub with no support, we have taken the bath chair out. As we all know it the little things that add up to the big things. We are still having some problem with constipation, hopefully we will get it straighten out soon.

Wednesday, will be a big day, Zachary and I will be picking up his stander. It took a little longer than we thought to get it. It will be great getting him to his feet, I know he is ready to. I hope everyone is doing great, we’ll talk it a couple of weeks.

- Monday, May 10, 1999 at 21:17:24 (EDT)

It’s been a little bit since we let everyone know what’s going on here. Tuesday last week Zachary had his one-year appointment with his pediatrician. That went well, he is now 23lbs and 31 ¾ inches. Zachary didn’t like getting the chicken pox shot or his blood taken, but it was over quickly. Then we meet Zachary’s dad and went to the neurologist. This is an appointment we look forward to, believe it or not. I don’t think she could believe how much he has improved since she saw him last. Zachary has gained strength in his legs and stomach, but not much in the back or arms. They are going to try putting him in a stander; this will get him on his feet. He will have to put weight on his legs and it will teach him balance. Hopefully if he does well, we will slowly take parts away from the stander. So it was a very good visit that day.

Zachary can’t wait until his Great Great Aunt Alyce gets here. He will be able to show off all his new toys he got for his birthday. Also show her around his house. We should have the grass cut by then, it seems there is never enough time to do anything. We hope to get the landscaping done this spring. This weekend we are picking up a whirlpool tub that is being given to us for Zachary. Also Zachary’s swing is going to get hung up so he can enjoy the beautiful weather we are having.

Everything else is fine; Zachary is slowly getting use too real milk. That is a tough transition on the stomach. We are still trying to find funding for the remodeling of the house. I can’t wait until that is all done; it will take a lot of stress out of our lives. Talk to you soon.

- Wednesday, April 21, 1999 at 21:06:01 (EDT)

Well it’s been a couple of weeks since we updated everyone. Zack was a little under the weather, he got dehydrated. He had a little virus that was going around. It's also that time of the year wear everything is blooming, everyone’s sinus are acting up. Last weekend I (Mary) went to California over the weekend. Zachary and his Dad were home alone. They did pretty well, Zachary was a little fussy, and he wasn’t feeling very good. He’s doing a little better, now he is working on his back teeth.

This weekend has been full. On Saturday, Zachary had his birthday party. We had lots of friends and family over. It was a lot of fun; Zachary was overwhelmed with all of the people and the presents. He has enough to keep him busy, until Christmas. Then on Sunday, the Easter Bunny came with lots of baskets and goodies in them. Both sets of grandparents were here to enjoy the day. Zachary’s dad found a cat that just had 4 kittens on our property. Now they are Zachary’s kittens. We made a nice home for them in a shed. We have to keep them safe from the hawks and fox. Also our dog Homer, he wants to play with them. Hopefully they will stay around.

Thanks to everyone that signed Zachary’s birthday card. It is very special. This has been a great first birthday for Zack.

- Sunday, April 04, 1999 at 18:26:03 (EDT)

We just wanted to thank Aunt Mary, Aunt Sue, & Uncle Doran for all their hard work on making Zack’s web page. Also to all the people that have left messages for Zack. I can wait for him to be old enough to understand what everyone has written, it won’t be long.

This week has been busy Zachary had therapy on Monday and Wednesday. Also on Wednesday, Zachary went to his dad’s work and had lunch with him. Zachary flirted with all of the women in the office. Today it was really nice. Zachary went for a ride in his wagon, he got for Christmas. Later in the day, we put him in the wheel chair that his caseworker brought him. It was hard to think about at first, but when he is in it he is happy. Zachary knows to push the wheels. He doesn’t have any control right now, but he is just learning. He got stuck a couple of time on the furniture. Then we took him outside in it. He was four wheeling in the back of the house. We’ll update you next week. Have a wonderful week.

- Sunday, March 21, 1999 at 23:04:27 (EST)

March 13, 1999

Everything is going great. Zachary has eight teeth now, he really likes french fries. He is getting really big, he is wearing 2T's now. It's hard to believe that he will be 1 year old, in less than a month. Zachary was just granted a wish from the Special Wish Foundation, we will be getting a camcorder to get all the great things to come. We will check in every couple of weeks to let you know what happening. He is doing better than they ever thought he would. Zachary is sitting on a bench by himself and reaching out to play. Zachary has a great personality he will go to anyone, unless you have a hat on. It was dad's day at school, they had green eggs and ham. The principal was wearing a hat that was like the one in the "Cat in the Hat." That was it, Zachary just wanted his daddy, he cried and won't go to anyone. Will update you next week.

- Saturday, March 13, 1999 at 17:23:04 (EST)