Medical Update Page
Please check back often as mommy will be updating my information
Samantha was born scoring a 8.5 on her apgar test appearing to a
very healthy baby.
Jim and I were starting to get concerned because of the lack of
movement from Samantha. She
appeared very floppy and weak. Her
head leaned to one side all the time and she was very weak in the neck
muscles. She also had very
cold feet and hands all the time. At
night she would sweat and she cried through most of the night.
During a well baby check up we mentioned to Samantha’s
pediatrician our concerns and she told us to keep an eye on her and that
she was probably just a lazy baby.
Took Samantha to her pediatrician and this time she agreed with us
and she arranged for us to be admitted into the hospital for testing with
a neurologist. After an EMG
test the doctor came in and informed us that he was 99 percent sure that
Samantha had Spinal Muscular Atrophy.
He ordered a genetic blood test to confirm his diagnosis.
Follow up visit to get genetic test results on Samantha.
Test came back positive. She
has Spinal Muscular Atrophy.
Samantha appears to be having trouble nursing and eating.
She continues to choke throughout her feedings.
She also appears to be losing weight.
Doctor is concerned and wants to watch her over the next couple of
weeks. Samantha’s hair
seems to be getting very thin and falling out.
Samantha was admitted to the hospital today for dehydration.
It appears she has lost her ability to swallow.
She had a NG-Tube placed through her nose to her stomach so that we
could feed her and get some weight back on her.
We decided that we would have a G-tube placed next month but we
wanted to feed her through the NG-Tube until we could get her weight back
up and get her stabilized. After
5 days they released us from the hospital and we set up a date to come
back for the G-Tube to be placed in December.
We convinced our doctor to write a prescription for a Bi-pap
machine which is a bilevel positive airway pressure type of a ventilator
to help Samantha breath while she is sleeping. We started her that
evening on 8/4 and then slowly began adjusting her settings until she
Samantha was admitted to the hospital for her G-tube Placement.
They also did a PH Probe on her to test for reflux.
They determined that at this time she did not need a
Samantha had her G-tube placement and they did it under a twilight
sleep using a drug called Versed. They
also set up for her Bi-pap Machine to be available as soon as they were
finished so that they could hook her up.
She did great and they put her right on her bi-pap machine when
they were finished.
Samantha celebrated her 1st birthday today.
She appears to be very healthy and she has put back on most of her
weight. We have started her on a new diet of Pediatric Vivonex and she is
doing very well. She has taken well to both her Bi-pap machine and her G-tube.
Samantha has been running a fever for the last three days and she
has had a strange odor coming from her mouth.
We took her to the emergency room where they ran several blood
tests and took an x-ray of her lungs.
She had fluid on her right lung and it was decided to admit her and
start her on antibiotics via I.V. and start nebulizer treatments every 6
hours. The doctors decided it
would be best to do a Bronchoscopy to get the fluid out of her lungs.
We kept her in the hospital for 8 days so that we would be sure to
get all the antibiotics into her system.
Samantha had a follow up visit with her Pulmonary doctor and it was agreed
to start her on a in-exsufflator machine. This is basically a
mechanically-assisted coughing machine to assist her with coughing. We
will start her out on the new machine when we get it next week.
Samantha had a follow up visit with her Pulmonary doctor and it was agreed to start her on a in-exsufflator machine. This is basically a mechanically-assisted coughing machine to assist her with coughing. We will start her out on the new machine when we get it next week.
04/11/2001: Samantha had a follow up visit with her neurologist and he was completely surprised by Samantha's change in her health and strength. We explained that since we had started her on the new diet along with the medical equipment we were now using on her that we felt it had increased her muscle usage as well as her general health. He was so happy with her that he said he did not need to see her again for six months.
Samantha had her g-tube replaced with the Mic-key button today.
They had to put her into a twilight sleep to remove the original
g-tube and then they put in the mic-key button.
She did great during the procedure and when she came back to
recovery we put her bi-pap on until she woke up.
06/06/2001: Samantha had her follow up visit with her pulmonary doctor today. The doctor was very pleased with Samantha and surprised at her health and her strength improvements. Samantha is 17 months old today.
09/28/2001: Samantha had her follow up visit with both her pulmonary doctor and her neurologist today and both were very pleased with her health. They both agreed that they could see a big improvement in her strength today. Both decided she was doing so well that they do not need to see her again for 6 months.
01/06/2002: Samantha Celebrated her 2nd birthday today, she also celebrated not being in the hospital for 10 months and staying healthy during that time.
04/24/2002: Samantha had her follow up visit with both her Pulmonary and her neurologist doctors today and again she was given a thumbs up. Again the doctors just are amazed at how great she is doing these days. Both doctors told us to keep up whatever it is that we are doing because it is working and they would see us back again in 6 months. Her neurologist also informed us that he had just seen another one of his patients a few days ago at the MDA clinic and that she has SMA type 1 and has been in his care since she was 3 months old and much weaker than Samantha and she is now 21 years old and going to college. What an inspiration!!
05/28/2002: Samantha had contractures in her feet that were causing her problems with her standing program. We started her with Serial Casting which is where they put on a cast on each foot up to mid calf for one week then they replace the cast each week until the foot can be put into the neutral position. It took only 3 weeks and now Samantha's feet will go into the neutral position with out causing her any pain. We have started her standing program up again and will have custom made KAFO's made to help maintain her feet and knees.
10/3/2002: Samantha had her follow up visit with her Pulmonary doctor and her Neurologist doctors today and again she was given a thumbs up. The doctors are still amazed at how wonderful she is doing. Both doctors told us to keep up with the things we are doing and that they would see us back in 6 months.
11/18/2002: Samantha had her first really bad cold since February 2001, and it was a very bad cold, she actually stopped breathing on us several times for what seemed like a very long time but fortunately we were able to get her breathing again with her in/exsufflator, bipap and oxygen (we only use oxygen in emergencies) and she recovered very well. She was very sick through the first week of December but we treated her with Antibiotics, she got a Rossefin Shot at the doctors office than we treated her with a 10 day dose of Zithromax and that seemed to take care of things, the doctor feels she had a very slight pneumonia and a very bad cold.
01/06/2003: Today we celebrated Samantha's 3rd birthday, what a wonderful day we all had, imagine that she was not even suppose to make it to her 1st birthday and here she is celebrating her 3rd!
03/31/2003: Samantha had her follow up visit with her Pulmonary doctor today and the doctor said she looked great and to keep up what ever we were doing because it is really working. We will return back again in 6 months.
05/08/2003: Samantha had her follow up visit with her Neurologist doctor today and again the doctor said she looked great, he noticed much more movement in her arms, legs and better head control today and he was impressed with her overall well being. He told us that from this point on she is past the critical stage of the disease and that now we just need to continue to keep her protected from colds and viruses and to keep up all her therapies. We will return back to see her doctor in 6 months.
05/13/2003: Samantha had a follow up visit with her Orthopedic doctor today and it was decided to Serial Cast her feet and ankles again for 2 weeks to correct the contractures and then after 2 weeks we would include full cast to work on her knees as well. She will have half cast for 2 weeks and then full cast for 2 weeks and hopefully this will correct her contractures in both her feet and her knees.
06/03/2003: Samantha got her cast off today and her feet and ankles look great, the contractures are completely gone. Her knees did not correct as well as we would have like to have seen but they do look much better. Unfortunately, she had to pretty bad blisters on her knees from the casting so we could not recast her. We will work on the knees at home by putting her in the Jacuzzi and then stretching her very well and putting on her knee immobilizers each and every day until we can get her knees corrected.