More About Me

I am known as a diva, angel and princess. I am only 11 months old, and have been told by many folks that I have gone through more in my short life then some have in their entire lives so far.

As I mentioned before, I was diagnosed on October 20, 2003 and I was 6 months old. I know it was a day that changed the lives of everyone I love dearly. All the research that my mother and my godmother did on Spinal Muscular Atrophy prior to my diagnosis came to a screeching reality. Up to that point, all the Spinal Muscular Atrophy information and reading were real, but not surreal until the official DNA test results.

The month of November was a blur. I was shuffled back and forth to my neurologist and pediatrician. We were also in the process of getting my "Early Intervention Team" together. My team now includes my very own Physical Therapist, Developmental Specialist, Occupational Therapist, Speech Therapist, Nutritionist, Nurse, Psychologist, Social Worker and a Case Coordinator.

In December I had many firsts. I know you might be thinking "firsts" like rolling over or pulling myself up. Unfortunally, I didn't have firsts like that, since I have very low muscle tone one of my firsts included a sleep study that took place December 12th into the 13th. It showed that I have sleep apnea and that my saturation levels drop during the night. They had me hooked up to many different electrodes to monitor everything from my leg movement to my Rapid Eye Movements.

Another December first was a swallow study. Up to this point in time I was still taking my bottle and enjoying baby food. Many kids like me who have Spinal Muscular Atrophy are known to aspirate. Which means food goes into the lungs instead of the stomach. My swallow study came back that everything was OK.

My BIGGEST December firsts of my life was a road trip out of the state to see a specialist in New Jersey. This specialist is a fantastic doctor who has dedicated many years of his life towards Spinal Muscular Atrophy. We were gone a total of 5 days and I even got to go into New York City to see the Rockefeller Christmas Tree. I will never forget my first trip out of the state, even though it was prompted by my specialist visit.

January was a slower month, except it has me in the hospital for the first time. The week of January 11th I was not feeling too well. My tempature spiked and I was brought to my pediatrician. She thought I might be starting an ear infection and gave me some antibiotics. By the following Thursday, I was still not feeling well and was brought into the Emergency Room to be deep suctioned since we did not have a suction machine in the home. While there, I had an X-ray that showed I had a little pneumonia in my upper right lung. I was admitted into the hospital for the first time that day. My stay was from Thursday, January 22nd until Saturday the 24th. I was so happy to come home and be in my own crib, surrounded by my toys. We were lucky to get a borrowed suction machine mailed to us from one of the nice families from the SMA support board. That following week was a rough one for me. On the morning of Wednesday, January 28th I choked while taking my medicine by mouth. My oxygen level which is normally 97-100 went down to 88 and my heart rate went to about 79. I know I turned a pale grey and my godmother had to turn me over for a quick Heimlich tap to get my medicine unjarred so I could breathe and she could suction it out. That afternoon we had a swallow study done once again. It show that I lost my full ability to swallow and the little bit of formula that I was forced to drink went into my lungs. While the immediate discussion began about transferring me to the local children's hospital for a temporary feeding tube placement, I once again started choking. This time it was much worse. I was still strapped in the x-ray chair when I started to turn blue and lose consciousness. My mother and godmother acted fast and got me stable and my numbers back up. It was a very scary situation for all involved since I was blue and lifeless.

I was then brought to the Children's hospital and admitted to get an N-J tube placed. My pneumonia was cleared up, but I was still admitted since I had not eaten since the night before and I had the choking episode twice in one day. I was at the hospital from Wednesday, January 28th until Friday January 30th. The N-J tube was a temporary solution to getting me food until a G Tube surgery could take place. The N-J was tubing that was secured into my stomach with a weight. It came out through my nose with a special attachment to connect my formula in a hanging bag and pump. We needed to get a kangaroo pump for my feedings before they would release me. Again, I was happy to get home to my own crib and toys.

My G tube surgery was scheduled for the next week, on February 4th. I was a little nervous since I didn't want to be intubated during the surgery because many kids with Spinal Muscular Atrophy have a VERY hard time getting extubated. We found out during pre-operation check-in that my surgery team read up on my condition. They assured my family that just a local anesthetic would be used. I'm happy to say that my surgery went fantastic with no complications and no intubation during it. I was in the pediatric intensive care unit for 24 hours. Then up to the normal pediatric floor for a few days to be monitored. I now had a new way to eat and it was great to have my belly full without having a tube coming out of my nose. My hospital visit was from Wednesday February 4th until Saturday, February 7th. Everyone needed to learn how to feed me with my new G tube. It is placed above my belly button to my left. It has a folded over flap with a plug. My brother keeps saying it reminds him of a tab for a blow up plastic toy or what you find on a raft or beach ball, that type of plastic plug.

The second week in February was quiet, but the third week took in interesting turn for me. Thursday, February 19th started off like a normal day. I got to sleep in a bit, had my 10 am feeding and while my godmother was JUST about to give me my 12 noon feeding I started to turn blue and my SAT pulse oximeter alarms started to go off . Within a second she had me over her knees while giving my chest physical therapy to my back and suctioning out my mouth and nose to clear my airways. My oxygen level was at 10-17 and my heart rate went to 20. After about 10 minutes of the chest physical therapy and suctioning, my numbers still did not start to rise. My full body was still blue and purple, my eyes were rolled in the back of my head and at one point when I looked at her my right eye was dilated and my left eye was pin pointed. She called 911, afraid that she could not bring me back from my unconscious state. I think I was out for a total of 15 minutes, and by the time the ambulance arrived my oxygen level was back up to 94 and my heart rate back to 120. I gave everyone a huge scare, but the EMS folks checked me out. My lungs were clear and they verified that my pulse oxygen machine registered almost the same as theirs. We refused a ride to the Emergency Room since I was back to normal. I was very tired and they told my godmother to let me sleep the episode off, which I did for about an hour. My pediatrician was called, and I got an appointment for that following Monday. The weekend was fine and I had no more episodes.

On Monday, February 23rd I went to my pediatrician appointment as a follow up to my "episode" the Thursday prior. My Daddy had bought an inverter for the van which allows my godmother to plug a box into the cigarette lighter and then my pulse oxygen Sat machine and suction machine into it. I now REALLY go nowhere without my machines. The car ride went fine, and the my doctor gave me a clear bill of health still puzzled about the episode but made it seem that through her reading about Spinal Muscular Atrophy, these "crashes" are a common occurrence and to be prepared for them and at any time, any moment. Not the most encouraging news to have gotten so we continued on with our day. I got to go by my daddy's' work to visit and my mommy's work to visit. I enjoyed getting out, until the van ride home. About 10 miles away from home, my oxygen level began to drop to 88. My godmother pulled off to the side of the interstate to suction me out and give me some chest physical therapy. After about 30 minutes on the side of the road, we were fine to continue home.

We got to the house and after my godmother parked the van, she came around to get me out of my car seat. She put her left hand on my head while with her right hand she lifted up the car seat safety bar. As she did so, my pulse oxygen sat machine started to beep and my full body weight tumbled out of the seat into her hands, I was unconscious, blue and purple. My oxygen level dropped to 7-8 and my heart rate dropped down to 9. I know I really scared my godmother by the worried tone in her voice while she was telling to me to talk to her. She gave me chest physical therapy on my back while suctioning out my mouth and nose. I don't know how long I was unconscious, but I know that once again I my right eye was dilated and my left eye was pin pointed. My oxygen level and my heart rate refused to climb, instead it slowly crept up, number, by number, by number making it seem like an eternity to both of us until I came to. Once I slowly became conscious I regained my pink color and my oxygen level came up to the 70-80 level. My heart rate stayed low and my godmother was afraid I would slip between her hands once again into the darkened state of unconsciousness. My grandma was at my house watching my older brother and came out to the van when we did come into the house. She did not have to see me at my worst state, but I was not fully conscious either. She would call my name and I would do my best to focus on her voice and her face. But I would also drift back into a sleepy state and let my eyes roll back into my head. My mommy arrived home while we were still out in the van and together I was brought in the house when my oxygen level was up to 95, my heart rate was 130, and it was safe for me to move. I felt fine the rest of the day even though it was the worst scare that I have given everybody.

Saturday, February 28th I had a new first. Through my "Early Intervention Team" I was given a kid kart to borrow and use. My family and I went to the mall!!!! It was the first time in awhile I got out and enjoyed seeing people and sitting up high in my new "wheels". I got tired and it was not very comfortable to sleep in. We had my other stroller and after my first "Public G Tube Feeding" I was put into the other stroller to relax and sleep. It was a great day with no episodes!!!

Mommy's Journel
Aunt Kathy's Journel