Hello there !
Let me tell you all about me. I was born on October 21st 1997 four weeks premature. I weighed 5 pounds and 15 ounces, stood 18 inches long and my head measured 13 inches. I was the fourth child born to my parents, not to mention a surprise. My mother went into preterm labour at 31 weeks but was hospitalized and put on magnesium sulfate and Brethine.
At around four months of age I came down with phenumonia and reactive airway disease. This was the start of my journey. At that time it was found that I had no anterior fontanelle but X-rays showed no premature closure of the skull. Second X-rays were again taken at 9 months when my back fontanelle had also closed prematurly, but still no closure of skull.
At around one year of age I was hospitalized with RSV and again reactive airway disease. It was at this time parents had the feeling something wasn't right. Every time they tried to talk to my doctor she would just tell them that all babies develop at different ages, but I wasn't even gooing or weight bearing on my legs yet.
At fourteen months I still was not weight bearing on my legs. Mommy was getting very worried now and insisted the pediatrican to listen to her. Finally she agreed and sent me on to a neurologist. I was diagnoised with microcephaly and developmental delay. A MRI done revealed an Arnold-Chiari I Malformation. At that time they told my mother that I would walk someday, maybe around age five or six, would not be able to talk or learn in an ordinary way. I had two hearing evaluations done and they came up normal, but when an Audio BAER test was done it was found out that I have conductive hearing loss in my right ear. I have also been diagnoised with hypotonia(low muscle tone)chronic sinusitis and severe speech delay. I have also found out that I am severely allergic to just about everything, mold, dust, dog fur, all grasses and most trees. I am also allergic to milk protein, Augmenton (sp) and lactose. They have also put me on latex allergy alert as well. I also suffer from asthma. I have what is known as Sensory Integragation Dysfunction.
The next year...
In January I had my enlarged adenoids and tonsils removed. I had to be rehospitalized two days later for secondary infection at the site of the tonsils and dehydration. I stayed in the hospital for four days.
In December 1999 I was diagnoised with having Upper Airway Resistance Syndrome(UARS) and was put on oxygen at night to keep my breathing passages open in hopes I would sleep better.
In Febuary 2000 I was hospitalized once again for severe sinusitis and dehydration. At that time the doctor thought I might have Cystic Fibrosis and did a sweat test. Thank God it came back negative. I was put on a 21 day antibotic treatment. Also in Febuary 2000 my pulmonary doctor diagnoised me with having reflux and started me on Zantac. Finally with that and my allergy medicines my sinuses cleared up for about a two week period.
In Septembor 2000 a non-verbal IQ test revealed that I had a non-verbal IQ of 132 (anything above 120 is considered gifted).
NOW THE BOMB EXPLODES !
On March 3rd 2000 I became a victim of near-drowning, I was hospitalized and put on a ventilator for only overnight. I left the hospital on March 6th only to be readmitted for severe respitory distress on March 8th. X-rays and blood work revealed severe Bi-lateral pneumonia, I almost didn't make it. They call this a second drowning.
On the 18th of April 2000 they did a liver biopsy, due to the fact that I have had raised liver enzymes for over a year now. The biopsy revealed that I had suffered some type of liver injury during my life, when, where, how, and why have yet been determined, but they do think it was drug related. I also had a swallow study done one week prior with good findings. But I still have Dysphasia and continue to choke and gag while eating or drinking.
As of the end of April 2000 I started wearing Cascade DAFOs for my severe toe walking and Joe Cool hand splints for my thumb abducting.
As of the second week of June 2000 I was offically diagnoised as spastic quadrapledgic. My OT thinks I have ataxic type Cerebral Palsy. Then a week later I had a Upper GI Series done which confirmed reflux, on July 10th I had a test called a 24 hour Ph Probe which showed quite a few episodes of reflux but not GERD. They are thinking all of my sinus and Respitory problems are due to the reflux. They have also found out that my turbinates (the bones in the nose) are enlarged and I may have to have surgery to make them smaller.
In the beginning of November 2000 I started having seizures. These seizures would leave me unconscience from 1 1/2 to 3 hours at a time. I had three in one week, that is when my doctor decided to admit me into the hospital and run some tests. They did a MRI, Upper GI series and a Gastric emptying study. The MRI revealed that my Arnold Chiari Malformation was instead a Dandy Walker Malformation. The Upper GI and Gastric emptying showed severe GERD and delayed emptying. They scheduled surgery for the 14th of November.
On November 14th I had a Nissen Funduplication (the upper part of the stomach is wrapped around the esophugus to tighten the opening so I can't reflux)and a g-tube placed. One week later I was readmitted for sepsis once again (first time was when I had my adenoids and tonsils out)and a severe toxic reaction to some bacteria that got in under my g-tube, I wasn't in good shape. After receiving double fluids and three heavy duty antibotics I started responding after 25 hours. Five days later I went home with IV antibotics for five more days and then 2 weeks of oral antibotics.
We went to Kansas for Christmas holiday 2000, I did fine on the trip up there and the two week stay, but coming home was just to much. My bowels stopped moving so I became blocked and ended up being dehydrated once again. After a two day hospital stay (celebrated the new year at the hospital)I came home starting to recover. A month later they had to put me on a special formula called Peptamen Jr., in this formula the protein has all ready been broken down, so it is much easier to digest and absorb.
The Year 2001...
I really don't like the idea of being feed through a tube in my belly, but I guess what has to be done has to be done. Here it is, 2001 and the year started out better than last year but there has been four hospital stays so far this year. On mother's Day Weekend I ended up once again with bi-lateral pneumonia and was also backed up. They tried everything, even a enima (which I did not like), finally after putting me on Lactalose I am able to have a bowel movement more often.
In June 2001 they discovered that my Nissen has probably failed and I am once again refluxing like before. A second sleep study done in June has verified that I have out grown the Upper Airway Resistance Syndrome and no longer need the O2.
Once again November was surgery month. They had to redo the Nissen and they also did a pyloriplasty (the opening into the intestines was widened) At first it seemed that I was doing well after surgery. The two weeks later the bottom fell out and I started going down hill fast. My stomach had completely stopped moving and nothing was being digested and nothing was going through. They were about ready to by pass my stomach all together with somethiing called a J-tube. But once again the Lord prevailed and slowly my stomach woke up. They think it was blocked due to inflamtion.
As of January 7, 2002 I no longer have my G-tube. I had fallen down on it at a play ground and the ballon erupted and it fell out. With some influence of my parents the doctors decided to keep it out and see how I do without it and eating on my own. So far I seem to be doing better this year than last year, but I guess only time will tell how far I really go.
Please keep checking back as my tries to do updates all the time.
