We Know What Is Wrong...So Now What?!
One of the grandma’s told mommy that there was another little girl in our area with SMA. Her name was Annah and she is my best friend. Mommy, Nana and me went to meet Annah and her mommy as soon as we found out what was wrong with me. Jeni, Annah’s mommy gave us some Tolerex. Then Kalair’s mommy, Liz, helped mommy and Nana figure out how much of everything to give me. Mommy and Nana started mixing up all this stuff for me to drink. It smelled really bad and was real sticky but I seemed to like it and drank it all up. Not long after starting all the diet stuff , I quit throwing up which I had been doing regularly for a good while. Then the first of November, right after we found out what was the matter, I got a cold and couldn’t breath good. Annah’s mommy came over late at night and hooked me up to the pulse ox and that very night Papaw, he’s a RN, had to suction me and got a pretty big plug out. After 2 days of me not eating, mommy and Nana took me to the ER at Duke. They gave me some IV fluids, did some labs and an X-ray and sent us home. They said my chest was clear. Nana and Papaw kept suctioning me at least 2 times daily for several days and I finally got better. This was a scary time for Mommy, Daddy and all my grandparents. The other mommies that mommy had talked to said take me to see Dr. Bach. That is just what her and Nana did. It was a fun trip even if it was long. I got to meet Skylar S. and her mommy, Tracy. They have helped mommy a whole lot on how to take care of me and make me stronger. Dr. Bach said he thought I was probably a weak Type 2 and that the diet , bipap, pulse ox, cough assist and feeding tube would help me a lot. He also said I need to wear a body jacket or TLSO. It is hot but helps me to sit up better. It wasn’t long after I started the diet that everybody noticed that I was getting a little bit stronger. Then when we actually got the bipap in January I really started to feel better since I could sleep real good. I could breathe easier and I didn’t wake up all sweaty anymore. In January I saw my GI doctor for the first time…mommy calls him farmer brown cause he wears a plaid shirt and is sort of country. I don’t care though cause he has made me grow, something I hadn’t done in a long time. I didn’t gain any weight from May 2003 until March 2004. He ordered some yucky test to be sure that I wasn’t refluxing and to see where my stomach was. We had to stay overnight in the hospital but that wasn’t too bad. There was actually a really cool fish tank there. After all these test were done he told mommy that I didn’t have reflux and that it would be a simple procedure to put in a feeding tube. We had to get up really early in the morning and go to the hospital in the snow then we had to stay 2 nights to be sure that the tube was working correctly. It was better this time cause I slept the first day and mommy brought my Nemo movie to watch the rest of the time. Nemo is my favorite movie. All this was in February. I also saw a pulmonary doctor in February he too wanted to run some test to be sure that I was breathing ok. First he told mommy that I had RAD, that means reactive airway disease. Then he told mommy that he didn’t think I need the bipap and that Dr. Bach pulls numbers out of the air. Mommy was fighting mad when we left but Nana told her that we already have the bipap and he can’t make us quit using it. Man at that point I probably would have kissed him if he could cause I didn’t like that mask on my face. He ordered another test that would require us to stay the night called a sleep study. Nana tried to educate the guy that hooked me up that night but it didn’t work he was hard headed. He put so many wires on me that I thought I would just scream so I did. Then he told me to go nite-nite…yeah right maybe he should try to sleep with a million wires hooked to his head and funny little tubes stuck up his nose. Anyway I made it through even though I sweated buckets because of all the machines he hooked me up to he forgot my bipap, well he didn’t forget he told me I could not have it tonight. Now that I have this test out of the way and a snake looking tube coming out of my belly I thought maybe I was done with doctors for a while. Wrong again. After we saw the pulmonary for the follow up he decides that maybe the bipap is ok but he didn’t like my settings so he made me get all hooked up again only this time he let me have my pappy. Then in the middle of the night he started playing with my settings and guess what I woke up soaking wet again. I guess nobody ever told that guy if it aint broke don’t fix it. We have now made it thru March and the newspaper has come out to do a story about me. I as such a cutie that the cameraman must have snapped 100 pictures of me. The story came out and I was on the front page, wow, how cool is that for a one year old. So many people read my story and wanted to help. One lady organized a yard sale in one week that raised 578.00. That is a lot of money for a quickie yard sale. Another family called and donated some equipment from tumbleforms. It is a little big but I will surely grow into it. Then another lady called and suggested that Nana do a gospel sing. Black-n-Decker where daddy worked did two fund raisers one raised 437.00 and the other raised 265.00. That is still a long way from a van but we will make it eventually. April got here and they took me to still another doctor. This one was a bone doctor. He was so happy that mommy had already gotten me a tlso and dafo’s . He said that it looked very good and he would see me in October for x-rays and a recheck. That was pretty simple then the end of April we went back to farmer brown and he changed my feeding tube to a Mickey Button that way when I am not feeding I don’t have a tube hanging out. I like the Mickey much better. Then in May we went back to the MDA clinic to find out the results of my genetics test. We asked one of the student doctors and he told us they didn’t have a report. Then we asked the MDA doctor and he tried to find it. Somehow they lost my blood or something anyway I had to be stuck again so they could do the genetics test. This made mommy and Nana real mad. In June we went to Chicago for a FSMA conference with lots of other SMA kids and their families. This was a lot of fun but I started to not feel very good while there then on the way home I got real sick. Jeni pulled off on a rest area and Nana went in and told them that we needed some electricity that I was real sick. Nana put me in the floor and coughed and suctioned until my oxygen level got a little better. Then they put me in the van and put my pappy on. That made me mad cause I thought pappy was only for nite-nite. Then while all this was happening Nana’s phone rang and it was a doctor at the MDA clinic calling to tell mommy that I did have SMA. Jeni drove really fast to get me too a hospital but they were dumb there. They took my pappy off and put me on oxygen. They didn’t understand that my muscles were to tired to breathe and I needed pappy to help me. Eventually after they did x-rays and said I didn’t have pneumonia or a collapsed lung we left and went to Annah’s grandmother’s house. I was real tired and wanted to go home. After we got home it was time to think about my birthday after all I was going to be 2 and the doctors told mommy I was going to die. Well July 27 came and I had a Nemo party at mommies and got lots of presents. The newspaper came out to do another story since I had now lived past what most kids with SMA do. They took a lot more pictures while I showed off for them.
My Life As It Began
Something is Wrong...but
What??
We Know What is Wrong, so NOW what?
Photo Pg 4 Christmas 2002 Photo Pg 5
Photo Pg 6 Photo Pg 7 Birthday 2003