See whats happening in my life.
See whats happening in my life.
| Hi I am Samantha Pointer. I want to tell you a little about my life. It has not been very long yet, but it has not been what you might call normal. So lets get started. |
|
noticed that I was not developing like I should. So they sent me and mommy to a nerologist (yet another ) did an EEG on me, it did not hurt. But the results were highly abnormal. The doctor told mommy that I was having seizures, 6 every 2 minutes.Of course the doctor put me on Phenylbarb and I think it helped. Mommy said that she saw a difference immediately.
I felt pretty good for about 3 months then I started having a different kind of seizure so the doctor upped the doseage of medicine. It only helped for about a month. The seizures got bad again. I started having what they called "Startle spells" and I stoped breathing, Boy, that was scarry even though it never lasted more than 10 seconds!
The put me in Pedi-ICU and began Dylantin with the Phenylbarb
. It did not help the seizures.
Away we went to Fort Worth Texas to Cooks Childrens Hospital. I know mommy was real scarred and there was nothing I could do to help. She was very worried about me and she was far away from home with me and no one else.. I was not much company for her since I still was too young to talk.
Well first the 's thought I had Infantile spasms and told mommy that I would never walk or talk. My Mommy did not give up on me 
, I knew she wouldn't.
They did EEG's, spinal taps, Mri and a bunch of other things that took using 's . This is how I brought in the new year. I got real good and some times I didn't even cry. The specialists measured me. They said I was underweight and I was about the size of a 3 month old baby and I am 1 year old.
Any way the 's put a tube in my tummy to feed me. It is called a G button. It makes it easier to get my medicine in me and mommy can feed me through it to make me stronger.
While we were in Cooks the 's did a chromosomal study and it showed a part of #15 chromosone is missing. That means I have something called Angelman Syndrome, a genetic disorder. They say I might sit upright and crawl by time I am 3. By time I am 6 to 8 years old, I might be able to wald short distances. As for speech, it will be limited to a few words. I know it will be a lifelong chalenge to care for me BUT, God would not have given a special child like me to just anyone. God knows I am in the best family I could ever have and Mommy, Daddy, Grandma Brenda, Grandpa Tony, and all the rest of my wonderful family will love me for as long as God leaves me in their care and they will be happy with any little improvement I make. You know with a special child you don't know what to expect so it is exciting each and every day.
Well,in February the community is trying to help me and my family. The first thing that happened is Channel 7 (KOSA) TV chose my family as this months family to help. They gave Mommy and Daddy $2,000.00. This helped because our phone got turned off (we were out of town seeing Doctors)and our house had a gas leak the whole time we were in Fort Worth, Texas at the hospital. Boy, was Mommy and Daddy upset when they got the bill! The money helped but they are still struggling. I cost them a lot of money. It takes a lot to care for me.
I am holding my own right now, but I still have quite a few seizures, but not a lot of big ones.
A man from A-1 Mobile Homes, helped Mommy and Daddy get in a real nice repo mobile home. They knocked the price down and helped get it financed. Grandma and Grandpa refinanced their home so Mommy and Daddy would have a place to put the new house. They love me sooooo much.
The Odessa American did a story on me too! To see it just click here.
Some other people at the Hideaway had a fundraiser for me. Every one had lots of fun and they raised $2,170.00 to go in my account and the private donations are still coming in. THANKS to all of you. Mommy and Daddy are getting to pay some of the bills. The account is over $3,000.00. Mommy has drawn out some for Doctor visits and medicines.
Home Depot is talking about donating materials to build a deck with a ramp. We will need that cause I won't be very good at walking. And thats not all .. The A. M. Lions Club is having a garage sale on Dunlaps parking lot on the 21st of April with the proceeds going to my fund.
I have to go back to Cooks Childrens Hospital in FT. Worth on the 23rd of April to see the Neurologist.
The good news is I can finally roll all the way over on to my stomach, I am proud of myself, but I am making everyone nervous because I still can't hold my head up very long at a time. So they watch me real close.
I can make all kinds of noises. I just can't get the hang of words yet. I reach for things but I don't make contact with things very often. I try real hard. They say my laughter is very contagious and my smile brightens up the whole room. Then there is this look I do .. I get a very ornery looking grin on my face, I squint my eyes and growl.... Everyone says it looks like my Grandpa Tony. I love to look like him.. ;) You know, I am not SPOILED, and even though I am still a very sick little girl, I know that God gave me to the best family He could ever have given me to. I am sooooooo Loved. Even though it is very expensive to care for me, my family will do every thing it takes to show me how much they love me. They say I am very special, but I thank God for giving me Mommy, Daddy and the rest of my family.
OH One more thing.. since I am only 15 months old I can not be doing this website by myself so God sent me Bizzybon2000 to help...
