Therapy for Layla
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Letter from Layla's Mommy;
Layla joined our family January 4, 2013. Beautiful baby girl with a head full of hair, 7 pounds 10 ounces 18.5 inches long. It was a beautiful pregnancy (besides the kidney stones) and an even more beautiful delivery. We decided to have a natural delivery and compared to the kidney stones this was a piece of cake! We took Layla home and she had a bit of Jaundice so we had to have her on a light therapy bed for one night. She was exclusively breastfed until 4 months old when we began introducing simple baby foods to her (sweet potatoes were her favorite). Her personality really began to show and we knew she was a keeper when we took her to Hawaii at 5 months old and she fell for Pineapple Ice cream. She definitely has a sweet tooth.
At 6 months old Layla was sitting unsupported, but she was using everything she had to not fall over so she could not play with her toys. We asked her Doctor about this and he told us babies do things on their own time.
At 9 months old Layla started to wheeze when she slept. We again asked the Doctor and he said it could just be the position she was sleeping in, or mucus in the way. It continued to get worse.
At 12 months old we took her to an Ear, Nose, and throat specialist. He used a scope to look at her wind pipe and told us it looked normal. He said wheezing can be brought on by acid reflux and put Layla on zantac for 3 month. At the end of the 3 months the wheezing was completely gone.
We began Physical Therapy for Layla at 13 months old and strength was coming but it was slow. By the time she was 15 months old we knew something was off because she was still not sitting unsupported for more than a couple minutes.
Her Doctor finally referred us to Primary Children’s Medical Center to see a neurologist. We took Layla to Pediatric Neurology and the Doctor thought something was wrong with Layla's brain because she has no meaningful words. (She was 17 months old) Layla was also not crawling or walking either. The Doctor ordered an MRI of her brain but those results came back normal.
In the meantime we took her to a gastroenterologist to help with her diet. She was a 17 month old weighing 15.5 pounds. The Doctor there put her on 3.5 bottles of pediasure a day, but it was usually a fight to get 2 down.
July 1, 2014 was the scariest day of our lives. We thought we had lost our sweet little girl. We were in Idaho visiting and went swimming. After being in the water about 10 minutes Layla quit breathing and became unconscious. The lifeguards started CPR and called an ambulance immediately. When they moved Layla into the ambulance she began vomiting. (This was a good sign) She was still not breathing on her own. The ambulance took us about 10 miles and we were picked up and taken the rest of the way by Life flight. Sometime between lifting off from the gas station parking lot to landing at the hospital (8 minute flight) Layla began to cry and breathe on her own. We will be forever grateful to the first responders and medical team that Saved Layla's life that day.
When we got to the hospital in Pocatello, Idaho they did a chest x-ray but her lungs were clear but they classified it as a near drowning. They kept us in the hospital overnight to monitor her and keep her stable. They released us the next morning.
The week of July 18th Layla started acting extremely lethargic and you could see every rib on her. We called the G.I. Doctor and he wanted to see her immediately. We took her to the clinic and found our 15.5 pound little girl was barely 14 pounds. We then were admitted to the Hospital for monitoring to see if Layla would be strong enough to undergo surgery so we could have a feeding tube placed. Layla again stopped breathing that day. This really got the Doctors moving.
We spent a week in the hospital. We saw a total of 5 different specialist teams and had many sleepless nights. Layla went into surgery which included and eye test, a muscle biopsy, a spinal tap, and placement of the feeding tube.
From July 21st -July 28th Layla had gained 1 pound and 9 ounces, she now weighed more than ever!!! August 11, 2014 we took Layla to have an EMG test done, which measures how quickly your nerves and muscles recover after being fatigued. At this appointment we learned the muscle biopsy was abnormal, providing information that her condition was affecting her nervous system, we also learned the spinal tap came back abnormal showing depletion in her folic acid.
The EMG told us that Layla has severe neuropathy. (Which is different in children then adults). This is a condition that potentially is treatable by medication but not necessarily curable. If the treatment doesn't work Layla could be wheel chair bound as she gets older. We are praying for a miracle because if the treatments don't work life expectantly past teens isn't likely.
Hearing this from a Doctor about your child was the worst possible thing to hear. They are not sure what the cause of Layla's condition is but we a continuing testing to see if it is something genetic and what we can do.
We have been battling with our insurance for several months to get them to pay for genetic testing. They have given us 3 denials because they consider the test experimental. Our Genetic Doctor had a meeting with the Physician Reviewer of our insurance and they are allowing him to file ONE LAST appeal giving more evidence they have found answers with this test. The cost of this test is approximately $7,500 from what the doctors told us.
We are also trying to get Layla into physical therapy with the Intensive Physical Therapy Institute. This is a 3 week program (5 days/week 4 hours/day). The total cost is $6,000 and again we have had our insurance deny this service 2 times all because the provider is out of network.
There are only 2 places in the State of Utah that provide this kind of therapy. We feel it a necessity to be able to get her into this Intensive therapy because unless we are able to get her body and organs stronger we are sure the outcome will not be good.
The Intensive Physical Therapy institute has started a foundation to help families with the cost of therapy. This is fantastic, but because it is a new foundation they don’t have a lot of funding. They have generously offered to put $2,000 towards Layla for this program. That leaves us with the remaining $4,000, which when you have a child with special needs extra money is hard to come by.
We are in the application process to get Social Security Disability for Layla to help pay for what our double insurance wont, but that is a lengthy process and approval is not easy or fast. It is critical that we act fast on her therapy but Insurance, Medicaid and Disability has their own agenda. We will not know if she qualifies for Disability until sometime around September. Our lives and treatment options are basically on hold until we can come up with the money to pay for these things.
Layla’s intensive therapy is scheduled to start June 22, 2015 if we are able to come up with the additional $4,000. Because of the extent of care Layla requires I, Layla’s mommy am only able to work 1 day a month and sometimes not even that. She has 3 machines she has to be hooked up to in order to even take her naps so it’s not an easy process trying to leave her with a sitter for longer than a couple of hours at a time.
Layla is almost 2 ½ and even with the therapy she receives already still cannot sit up, roll over, stand or be a typical 2 year old getting in trouble. The therapy she is in now has greatly benefited her where she is able to roll with help, sit for 30 seconds unassisted. She has made huge progress from where she was a year ago but not enough to keep her little body going.
Please help us in tring to reach our goal for her therapy, genetic testing and other expenses so our little Ladybug can get some answers and help she needs.
Love, Layla, Tiffany and Chris
To follow Layla's Progress go to...
Letter from Layla's Mommy;
Layla joined our family January 4, 2013. Beautiful baby girl with a head full of hair, 7 pounds 10 ounces 18.5 inches long. It was a beautiful pregnancy (besides the kidney stones) and an even more beautiful delivery. We decided to have a natural delivery and compared to the kidney stones this was a piece of cake! We took Layla home and she had a bit of Jaundice so we had to have her on a light therapy bed for one night. She was exclusively breastfed until 4 months old when we began introducing simple baby foods to her (sweet potatoes were her favorite). Her personality really began to show and we knew she was a keeper when we took her to Hawaii at 5 months old and she fell for Pineapple Ice cream. She definitely has a sweet tooth.
At 6 months old Layla was sitting unsupported, but she was using everything she had to not fall over so she could not play with her toys. We asked her Doctor about this and he told us babies do things on their own time.
At 9 months old Layla started to wheeze when she slept. We again asked the Doctor and he said it could just be the position she was sleeping in, or mucus in the way. It continued to get worse.
At 12 months old we took her to an Ear, Nose, and throat specialist. He used a scope to look at her wind pipe and told us it looked normal. He said wheezing can be brought on by acid reflux and put Layla on zantac for 3 month. At the end of the 3 months the wheezing was completely gone.
We began Physical Therapy for Layla at 13 months old and strength was coming but it was slow. By the time she was 15 months old we knew something was off because she was still not sitting unsupported for more than a couple minutes.
Her Doctor finally referred us to Primary Children’s Medical Center to see a neurologist. We took Layla to Pediatric Neurology and the Doctor thought something was wrong with Layla's brain because she has no meaningful words. (She was 17 months old) Layla was also not crawling or walking either. The Doctor ordered an MRI of her brain but those results came back normal.
In the meantime we took her to a gastroenterologist to help with her diet. She was a 17 month old weighing 15.5 pounds. The Doctor there put her on 3.5 bottles of pediasure a day, but it was usually a fight to get 2 down.
July 1, 2014 was the scariest day of our lives. We thought we had lost our sweet little girl. We were in Idaho visiting and went swimming. After being in the water about 10 minutes Layla quit breathing and became unconscious. The lifeguards started CPR and called an ambulance immediately. When they moved Layla into the ambulance she began vomiting. (This was a good sign) She was still not breathing on her own. The ambulance took us about 10 miles and we were picked up and taken the rest of the way by Life flight. Sometime between lifting off from the gas station parking lot to landing at the hospital (8 minute flight) Layla began to cry and breathe on her own. We will be forever grateful to the first responders and medical team that Saved Layla's life that day.
When we got to the hospital in Pocatello, Idaho they did a chest x-ray but her lungs were clear but they classified it as a near drowning. They kept us in the hospital overnight to monitor her and keep her stable. They released us the next morning.
The week of July 18th Layla started acting extremely lethargic and you could see every rib on her. We called the G.I. Doctor and he wanted to see her immediately. We took her to the clinic and found our 15.5 pound little girl was barely 14 pounds. We then were admitted to the Hospital for monitoring to see if Layla would be strong enough to undergo surgery so we could have a feeding tube placed. Layla again stopped breathing that day. This really got the Doctors moving.
We spent a week in the hospital. We saw a total of 5 different specialist teams and had many sleepless nights. Layla went into surgery which included and eye test, a muscle biopsy, a spinal tap, and placement of the feeding tube.
From July 21st -July 28th Layla had gained 1 pound and 9 ounces, she now weighed more than ever!!! August 11, 2014 we took Layla to have an EMG test done, which measures how quickly your nerves and muscles recover after being fatigued. At this appointment we learned the muscle biopsy was abnormal, providing information that her condition was affecting her nervous system, we also learned the spinal tap came back abnormal showing depletion in her folic acid.
The EMG told us that Layla has severe neuropathy. (Which is different in children then adults). This is a condition that potentially is treatable by medication but not necessarily curable. If the treatment doesn't work Layla could be wheel chair bound as she gets older. We are praying for a miracle because if the treatments don't work life expectantly past teens isn't likely.
Hearing this from a Doctor about your child was the worst possible thing to hear. They are not sure what the cause of Layla's condition is but we a continuing testing to see if it is something genetic and what we can do.
We have been battling with our insurance for several months to get them to pay for genetic testing. They have given us 3 denials because they consider the test experimental. Our Genetic Doctor had a meeting with the Physician Reviewer of our insurance and they are allowing him to file ONE LAST appeal giving more evidence they have found answers with this test. The cost of this test is approximately $7,500 from what the doctors told us.
We are also trying to get Layla into physical therapy with the Intensive Physical Therapy Institute. This is a 3 week program (5 days/week 4 hours/day). The total cost is $6,000 and again we have had our insurance deny this service 2 times all because the provider is out of network.
There are only 2 places in the State of Utah that provide this kind of therapy. We feel it a necessity to be able to get her into this Intensive therapy because unless we are able to get her body and organs stronger we are sure the outcome will not be good.
The Intensive Physical Therapy institute has started a foundation to help families with the cost of therapy. This is fantastic, but because it is a new foundation they don’t have a lot of funding. They have generously offered to put $2,000 towards Layla for this program. That leaves us with the remaining $4,000, which when you have a child with special needs extra money is hard to come by.
We are in the application process to get Social Security Disability for Layla to help pay for what our double insurance wont, but that is a lengthy process and approval is not easy or fast. It is critical that we act fast on her therapy but Insurance, Medicaid and Disability has their own agenda. We will not know if she qualifies for Disability until sometime around September. Our lives and treatment options are basically on hold until we can come up with the money to pay for these things.
Layla’s intensive therapy is scheduled to start June 22, 2015 if we are able to come up with the additional $4,000. Because of the extent of care Layla requires I, Layla’s mommy am only able to work 1 day a month and sometimes not even that. She has 3 machines she has to be hooked up to in order to even take her naps so it’s not an easy process trying to leave her with a sitter for longer than a couple of hours at a time.
Layla is almost 2 ½ and even with the therapy she receives already still cannot sit up, roll over, stand or be a typical 2 year old getting in trouble. The therapy she is in now has greatly benefited her where she is able to roll with help, sit for 30 seconds unassisted. She has made huge progress from where she was a year ago but not enough to keep her little body going.
Please help us in tring to reach our goal for her therapy, genetic testing and other expenses so our little Ladybug can get some answers and help she needs.
Love, Layla, Tiffany and Chris
To follow Layla's Progress go to...
Organizer and beneficiary
Whitney Wellard
Organizer
West Valley City, UT
Tiffany Craddock
Beneficiary