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MY   JOURNAL
At the age of six months, I was diagnosed with Spinal Muscular Atrophy type 1. It was a real surprise to my family because there is no warning that this could ever take place.
On June 22, 1998, my parents had a day of prayer and fasting for me. The people at church and many others all over the world were praying for me that day. It was a very good day for me and I know God heard all the prayers.
In August I had my first hospital visit. It was very scary because noone knew what was going to happen or what to expect next. I spent 21 days in the PICU and took home many pieces of medical equipment. I guess you could say I brought the hospital home with me.
On October 22, 1998, I celebrated my first birthday. Mommy and Daddy had a big party for me at my grandma and PaPa's house. There were alot of people there and I received many gifts. Everyone had a good time. I did until they sang "Happy Birthday" to me. I cried.
Then a couple weeks later I went back into the hospital. I was in the last weekend of October only for two days, but after going home for a couple days, I was rushed right back to the hospital. This time I got to ride in an ambulance with lights and sirens. I rode in the back with a bunch of people and mommy rode up front. I think they needed help driving or something like that.
In December I got to be home in my own house for the holidays. It was great! There is nothing better than being spoiled by all the people that I love. Life is grand!
Now it is January and I went back to see the pulmonologist. I have been sick all week and mommy and daddy thought I should be seen earlier than February. The doctor had already set in his mind that I would be admitted into the hospital. He thought my lungs did not sound very good and I could end up collapsing both lungs if I went home. After I had another x-ray done, the radiologist could not find anything wrong with my lungs and I was sent home with some antibiotics to treat my sinuses. I was so happy that I did not have to stay and so were my mommy and daddy. Now I will rest and get better from my cold and be comfortable at home with my cartoons.
February: Once again I was in the hospital, but this time I went all out.While I was sleeping I vomited my feeds while on my bi-pap. I then stopped breathing and mom and dad had to call 911. I had five policemen and two paramedics at our door at 2:30 am. They took me from my mommy (after she got me breathing again) and rushed me to the hospital. Then some friends from PICU came to St. Augustine and escorted me to the children's hospital again. Once again I had to go on a ventilator and take a rest. Noone really knows what happened. I am happy to say that this hospital stay only lasted six days. Mommy and daddy are working very hard to keep me from going back.
March: Two weeks later, I am back in the hospital. I vomited my feeds again and aspirated. I wasn't as bad as before. Daddy thinks I was trying to get out of taking my nap. This trip there was not an ambulance available to transport me to the children's hospital, so mommy and I got to take a helicopter ride. It was our first helicopter ride and our last. It was a very windy day and neither mommy nor I enjoyed the ride. This time I did not have to go on the ventilator. The doctors gave me some antibiotics and some icky nose spray to help me breathe. I only stayed in the hospital for three days so that I would not catch anything else. I am now felling much better. In fact I haven't felt this good in over three months. I am on the road to recovery.
April: Month number four and I have just returned from the hospital again. I spent ten days in the PICU and on a ventilator. My whole right lung collapsed this time, but I recuperate fast. This hospital trip was a little more productive for everyone. Mommy and Daddy talked with the doctors and had x-rays done on my sinuses and stuck more tubes down my nose. They didn't find anything which was good and I also had allergy tests done which are still being studied. Now I am home doing better than I have in four months. I am off oxygen and only on my bipap when I am sleeping. The doctors have decided that it is not time for me to have a tracheotomy or the stomach surgery. YIPEEEEE!! Now I am off to start my fun filled summer. Mommy and Daddy are trying to buy a new house for us. I got to get better so that I can help move my room. Talk to you later!
July: It has been a while and some things have changed. In May, I finally got a bigger bedroom. We got to move into our new house. It was very exciting watching Papa, DaDa and Grandpa move all the furniture out of one house and into a big yellow truck. Then they went to the new house and put everything inside it. I could tell they were very tired when they were done. I just got to watch and supervise. Since April, I have remained at home, but we did have 911 come out to the house one day. I had trouble breathing for my daddy . Really I just wanted all the paramedics to know that I moved and to see my new house. It was exciting. I turned out to be okay. Mommy called the doctor and he put me on some more antibiotics for a possible sinus infection. Next time I write, I will hopefully have my new stroller/wheelchair. Right now mommy and daddy carry me around in a wagon. It is fun!! But I am sure I will enjoy the chair even more. I will let you know when it comes and let everyone see a picture of me in it. Bye!!
August: This has been a great month for me. I have been feeling really good and able to do more things with the family. A couple of weeks ago a friend found a stroller that was left behind by another child. This little girl did not need this stroller anymore, so our friend gave it to me. I love it!! Now I can sit up and watch the big t.v. , go for walks, and visit with people on a higher level. I feel so much better too since I have been able to sit up more. Yesterday, mommy and daddy took me for a ride in the car and we went to visit some friends. I even got to go see my grandma at work. It was fun! This has been the best month for me in a long time. I hope I will get to go out soon and do more things.
September: This has been an exciting month for me and my family. This is the first time we ever had to evacuate because of a hurricane. Also this is the longest trip that I got to take in a car in a long time. We went to Lake City Florida to avoid the storms, which is only two hours away. It was a fun trip. I got to sleep in the same bed as my mommy. I really enjoyed that! I even got to meet some new people that mommy and daddy knew. It was very exciting for the whole family. My papa and grandma went with us. We were only gone for three days and everything was okay when we got home. Everyone was so proud of me because I did so well on the trip. I can't wait until we take another trip. Hopefully there won't be a hurricane involved. Until next time!!
October: 22nd - Today I just celebrated my 2nd birthday! Happy Birthday to Me!! Thank you for all the emails and birthday cards. Everyone is very happy and bringing me all sorts of crinkly packages with stuff inside. I don't really understand, but I sure do love the attention. 23rd - Lots of people just came over to help me celebrate my birthday. Of course I didn't have my nap today like I was told and I didn't enjoy the party as much as everyone else. Mom said it reminded her of a song - "It's My Party and I'll Cry If I Want Too". I slept most of the time while the guests ate and talked. I still got more crinkly packages though. Overall I am doing much better. I have been out to church and even a big trip to Super Walmart! I haven't been there in over a year. My next major outing is the OctoberFest at church. I get to dress up in my costume. I will have a picture of me coming soon. Can you guess who I will be???????
2000  Lost somewhere.  It was a great year!
February 2001:   Okay mom has not been at her best lately.   The webpage was lost and mom has not updated since when??????  I can be sure to tell you that I have been very good!! :)   I will try and update you on some happenings.  
1)  I had my third birthday on October 22, 2000.   We didn't have a big party this year, but I did get to go to the zoo.   It was cool!  I didn't get to see much of the animals because the fence was higher than my chair, but I did get to pet the goats and let them eat out of my hand.   They slobber worse than my dog. YUCK!
2)   In December I got to take a road trip to Clearwater Florida which is about 3 hrs away.  Mom had to speak to a group of RT's about me.  It was neat staying in a hotel, but the cartoon station was not good.  We did get to meet one of Dr. Bach's respiratory therapist, named Brian.  He was nice.
3)  Christmas was great!  We went to grandma and papa's house and once again I was spoiled.  They all love me!  I did get to go to a Christmas party with some of my grandma and grandpa Storms friends.  It was fun!
4)  I celebrated the new year in my bed asleep.
That I think sums up my major activites.  I am still in preschool and learning everything.  I can count from 1-5 and sometimes 10 (if I am in the mood).  I know my colors, shapes, and most of the animals.  I especially know my cartoons.  I even got a computer which I love to play with.  I have a switch that lets me turn the pages of the stories that are on my computer.  I am an independent kind of guy.  Mom does say that I am just like my dad.  We both can get clicker happy...my switch and his remote control.  I do wish they could hook up my switch to my tv.  Then I would be on a roll.
I hope you enjoy the webpage.  I will try and keep mom on her toes and keep everyone updated.  Bye!

April 2001:   Hope everyone is doing well.   We ended March with a couple days in the hospital.  I was only in from Thursday until Saturday with decreased sats.  I came home with some antibiotics, but when I finished them I wasn't really well yet.  A couple weeks later I went back to the hospital.  This time I got to ride in the whirlly bird again. Mommy wasn't allowed to go with me this time, but that is okay, because I am a big boy now.  So we spent five days and Easter in the hospital.  I am much better now.  It was another sinus infection and I had a hard time getting over it.  Now I can breathe easy and feel much better.  We will try and make another two years until my next hospital visit which will be verrrry short.  I am going to stop by and say "hello" and that is it.  Until then I will send pictures so that they won't miss me too much.  
Our family does wish everyone a Happy Easter.  We hope you all had a wonderful day with your families.

April 26, 2001:   Today Matthew went home to be with God.  For a very little man, he did a big job here on earth.  The lives that Matthew touched was tremendous.  We are so proud of our little boy.  The past three years have had their trials, but the joy of being his mother and father made each day a blessing.  We are going to miss our boy very much, but we know that Matthew is now safe, perfect and happy.  


 

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