Sorry its been awhile......
Kayli's urine test came back positive for heavy metals in her system. She has a high amount of mercury and arsenic in her. We are currently trying to make an appointment for her to have a heavy metal detox done, but we will need to collect her urine for 6 hours after the detox and we have no idea how we could do that. Once we get it figured out I will let yall know. The diet is going well, we are 3 weeks into it and we all seem to be adapting to it. It may be awhile before I post again, my dad is in the process of being diagnosed with cancer. So I am a little stressed and busy.
Friday, December 5, 2008
Thursday, November 20, 2008
GFCF Diet ~ Day 3
Things are going well, nothing to report! Auntie Sabrah comes in today so I am sure Kayli will be excited to sing with her! I just found these pictures from about 3 years ago -
Wednesday, November 19, 2008
We got the urine, oh yeah! & GFCF Day #2
Probably TMI, but we needed to get a urine specimen to send to France to see if Kayli does in fact have Autism. Well after the third try (we could only send first morning pee) we got it today!
I kept having nightmares that we wouldn't be able to get it and we would never know for sure if this diet is for nothing or not, or if we would ever be able to start the HBOT. So I guess I can rest easy now.
So off to Paris it goes, the doctor told us to make sure we didn't declare a value on the pee. That makes me wonder about past people sending it in! So I ask, what would you declare the value of your pee?
Oh and the diet went smoothly yesterday, I think this may be easier than we thought!
I kept having nightmares that we wouldn't be able to get it and we would never know for sure if this diet is for nothing or not, or if we would ever be able to start the HBOT. So I guess I can rest easy now.
So off to Paris it goes, the doctor told us to make sure we didn't declare a value on the pee. That makes me wonder about past people sending it in! So I ask, what would you declare the value of your pee?
Oh and the diet went smoothly yesterday, I think this may be easier than we thought!
Tuesday, November 18, 2008
GFCF Diet ~ Day 1
Wow there is a lot of food with milk & wheat products in them!! Casey and I took the boys to Wholefoods in La Jolla on Sunday to see how easy it would be to find gluten free items. It was fairly easy, they mark every item with a specific "gluten free" tag on the shelves. The problem is what do we feed her? As most of you know she will eat practically anything, and lots of it! So what do we get without breaking the bank but making sure she has a good assortment to choose from? I still don't know what we got her! I was trying to concentrate on one meal at a time. So for breakfast it had to be something fairly easy so that my mom would make it (she generally feeds the kids in the morning) Lunch had to be easily packed to go to school, and dinner would be something that we could make for only her and still get everything done at a decent time so that all of the kids would be happy. Well inspite of all of the issues we managed to make it through the day yesterday without any Gluten or Caesin, yay! So on to day two, so far so good!!
Monday, November 17, 2008
Ancient History
This is the story of Kayli Ryan. About to start a new journey into the unknown. In order to find out about the future, you need to know the past.
Kayli Ryan Bellovich Collar (don't laugh Rachel.) Was born June 27th, 1998. She was born about 3 weeks early with a severe birth defect called Gastroschisis. Gastroschisis is an opening in the abdominal wall in which various organs are developed in the womb on the outside of baby's body. In Kayli's case her stomach, appendices and intestines were on the outside of hers. She had her first surgery within hours of birth to start the repair of her belly. The way that Gastroschisis is repaired is there is a "silo" hung above the baby's body that holds up any of the organs that are not yet put back in. Each day as the abdomen grows and stretches a little bit of the organs are put back into the abdominal cavity. In Kayli's case it took 7 days for everything to go back in. On July 4th, 1998 she had her closure surgery and was able to be held for the first time since being born.
Fast forward one week later Kayli was still in the hospital. (It can take anywhere from 2 weeks to 3 months in most cases for the organs to start working properly in order for her to be able to go home) She fell into septic shock and went into arrest. She stopped breathing for 7 minutes and they rushed her into the PICU. She was intubated, given antibiotics and watched for any improvement. For about 3 weeks we were told every day that she might not make it through the night.
The doctors found that she had Group B Strep sepsis & meningitis. The meningitis and lack of oxygen to the brain caused a new development of hydrocephalus. Hydrocephalus is commonly known as water on the brain. The little "sponges" in the brain do not redistribute the cerebral spinal fluid back into the blood therefore it collects in the ventricles of the brain and pressure causes the brain to squish into the skull. She has a VP Shunt placed which drained the fluid down into the peritoneum of the stomach so that it would be absorb back into the blood. Know all you smarties out there would say, Robyn, how can it be put into her peritoneum? She had gastroschisis, therefore she had no peritoneum! And I would say that the awesome pediatric surgeon and neurosurgeon actually made a peritoneum for her, the marvels of medicine!
Anyway Kayli went home on her 4 month birthday with a NG tube to eat by and an oxygen tank to breathe by. And some pretty wicked little battle scars on her belly. We were told that we shouldn't expect her to develop much more than a vegetable and her outlook was grim.
Her first 4 years of life were pretty crazy! She didn't eat, she didn't walk and she didn't talk. But she liked to spin on her butt on the floor and she started to sing. She didn't sing the words, but she knew the melody of a lot of kids songs and she would hum them.
She was diagnosed with Cortical Visual Impairment. Which was explained to us as, her eyes are normal but the signal is getting lost in her brain. She can see somethings, and sometimes but it changes constantly. Imagine looking through a piece of swiss cheese but the holes are constantly changing.
She was also thrown into the diagnosis of Cerebral Palsy. Because she has various disabilities, CP was the best fit for her.
September of 2000 she was hospitalized for a swollen belly and a "pus" leaking out of her scar on her stomach. I knew that it was her cerebral spinal fluid building up in her belly and not getting reabsorbed into her blood stream. I told the doctors that and they told me it was impossible and that there was no way that was what it was. WELL IT WAS, HA HA! (Sorry that still gets a rise out of me 8 years later if you can't tell, lol) The peritoneum that the surgeon fashioned for her in the first surgery quit working and they had to reroute her shunt to the pleural space of her left lung (which is where it still is to this day) And they put in a G-tube, which is a feeding tube that does directly into her stomach instead of having to keep putting in a tube through her nose down her throat and into her belly.
At age 4 a lot of things happened for Kayli, she started to walk on her own and eat through her mouth. She also developed a pretty severe seizure disorder that would throw her into seizures lasting hours long.
Kayli is now 10 years old! Developmentally she is around 1 1/2 years old. She does not conversate, but she does say some words and she just recently started mimicking everyone. She has her own words for some things like bouf for poop & yes for no (and viceversa, kind of a puzzler) She likes to spin while standing in the kitchen and is quite impressive with her speed. Though you do want to stay away from her arms while spinning, they tend to hit tender places while spinning at 30 miles per hour. She enjoys teasing her two younger brothers Talen & Kirin and will often kick them in the head for fun (it's actually kind of funny most of the time)
On to the Unknown......
On Saturday we took her to meet Dr. Stoller at the California Intergrative Hyperbaric Center. We spoke to him about doing Hyperbaric treatments for Kayli. This is borrowed from the CHIC website:
So after 10 years of not having really any hope of being able to help Kayli develop further than where she is, we can start thinking about what might happen.
And it might not help her at all, BUT it is nice to have a little hope for once.
Kayli Ryan Bellovich Collar (don't laugh Rachel.) Was born June 27th, 1998. She was born about 3 weeks early with a severe birth defect called Gastroschisis. Gastroschisis is an opening in the abdominal wall in which various organs are developed in the womb on the outside of baby's body. In Kayli's case her stomach, appendices and intestines were on the outside of hers. She had her first surgery within hours of birth to start the repair of her belly. The way that Gastroschisis is repaired is there is a "silo" hung above the baby's body that holds up any of the organs that are not yet put back in. Each day as the abdomen grows and stretches a little bit of the organs are put back into the abdominal cavity. In Kayli's case it took 7 days for everything to go back in. On July 4th, 1998 she had her closure surgery and was able to be held for the first time since being born.
Fast forward one week later Kayli was still in the hospital. (It can take anywhere from 2 weeks to 3 months in most cases for the organs to start working properly in order for her to be able to go home) She fell into septic shock and went into arrest. She stopped breathing for 7 minutes and they rushed her into the PICU. She was intubated, given antibiotics and watched for any improvement. For about 3 weeks we were told every day that she might not make it through the night.
The doctors found that she had Group B Strep sepsis & meningitis. The meningitis and lack of oxygen to the brain caused a new development of hydrocephalus. Hydrocephalus is commonly known as water on the brain. The little "sponges" in the brain do not redistribute the cerebral spinal fluid back into the blood therefore it collects in the ventricles of the brain and pressure causes the brain to squish into the skull. She has a VP Shunt placed which drained the fluid down into the peritoneum of the stomach so that it would be absorb back into the blood. Know all you smarties out there would say, Robyn, how can it be put into her peritoneum? She had gastroschisis, therefore she had no peritoneum! And I would say that the awesome pediatric surgeon and neurosurgeon actually made a peritoneum for her, the marvels of medicine!
Anyway Kayli went home on her 4 month birthday with a NG tube to eat by and an oxygen tank to breathe by. And some pretty wicked little battle scars on her belly. We were told that we shouldn't expect her to develop much more than a vegetable and her outlook was grim.
Her first 4 years of life were pretty crazy! She didn't eat, she didn't walk and she didn't talk. But she liked to spin on her butt on the floor and she started to sing. She didn't sing the words, but she knew the melody of a lot of kids songs and she would hum them.
She was diagnosed with Cortical Visual Impairment. Which was explained to us as, her eyes are normal but the signal is getting lost in her brain. She can see somethings, and sometimes but it changes constantly. Imagine looking through a piece of swiss cheese but the holes are constantly changing.
She was also thrown into the diagnosis of Cerebral Palsy. Because she has various disabilities, CP was the best fit for her.
September of 2000 she was hospitalized for a swollen belly and a "pus" leaking out of her scar on her stomach. I knew that it was her cerebral spinal fluid building up in her belly and not getting reabsorbed into her blood stream. I told the doctors that and they told me it was impossible and that there was no way that was what it was. WELL IT WAS, HA HA! (Sorry that still gets a rise out of me 8 years later if you can't tell, lol) The peritoneum that the surgeon fashioned for her in the first surgery quit working and they had to reroute her shunt to the pleural space of her left lung (which is where it still is to this day) And they put in a G-tube, which is a feeding tube that does directly into her stomach instead of having to keep putting in a tube through her nose down her throat and into her belly.
At age 4 a lot of things happened for Kayli, she started to walk on her own and eat through her mouth. She also developed a pretty severe seizure disorder that would throw her into seizures lasting hours long.
Kayli is now 10 years old! Developmentally she is around 1 1/2 years old. She does not conversate, but she does say some words and she just recently started mimicking everyone. She has her own words for some things like bouf for poop & yes for no (and viceversa, kind of a puzzler) She likes to spin while standing in the kitchen and is quite impressive with her speed. Though you do want to stay away from her arms while spinning, they tend to hit tender places while spinning at 30 miles per hour. She enjoys teasing her two younger brothers Talen & Kirin and will often kick them in the head for fun (it's actually kind of funny most of the time)
On to the Unknown......
On Saturday we took her to meet Dr. Stoller at the California Intergrative Hyperbaric Center. We spoke to him about doing Hyperbaric treatments for Kayli. This is borrowed from the CHIC website:
"Hyperbaric Oxygen Therapy (HBOT) is a specialized medical intervention in which the atmospheric pressure is increased above 1 ATA (above sea level-14.7 psig), usually by the filling of a single person chamber, multi-place chamber or a hyperbaric room with a dose specific amount of oxygen (atmospheric oxygen or enriched oxygen). At sea level, our lungs absorb a certain amount of oxygen molecules from the air. When descending to lower altitudes (below sea level), the pressure is greater (above 1ATA) and now the lungs more easily absorb the compressed oxygen molecules in the air.
In contrast, at higher altitudes, when the pressure drops, the lungs work harder to absorb the dispersed oxygen molecules from the air. This is why oxygen masks deploy in an airplane during sudden high altitudes changes, helping to increase the O2 content due to a lack of pressure.
During a hyperbaric “dive” the fluids and tissues of the body receive an infusion of readily available oxygen. In fact, even cells and areas of the body with limited circulation become saturated in oxygen. The effect is an uptake of oxygen in the blood, plasma cerebral-spinal fluids, and tissues. In addition, the vaso-constrictive nature of hyperbaric therapy has an added effect of reducing inflammation and edema."
So in other words, Kayli will be put into a room with me that will be put under pressure for 1 hour a day for 30 days. She will also be wearing a hood that will deliver 100% oxygen (or less depending on what the doctor prescribes) The hope is that it will cause capillaries to develop in places in her brain that has gone dormant because of her brain damage. Which in turn will help her develop further than she can now.
Dr. Stoller thinks there might be a chance that she is autistic. She has shown autistic tendencies throughout the years that had always just been thought to do with her developmental issues. So we need to have a urine analysis done to see if there are an agent called perforins present. If there is, than she is considered to be on the autism spectrum (pardon my wordage if it is not correct, this is all about me learning this new world as well!) With that comes a new diet, which eliminates gluten (a protein found in wheat and other grains) and casein (a protein found in milk) from the diet. And the start of some nutritional supplements that has shown to help with treating autism.
So we started the diet today. We made our first attempt at getting the urine for the analysis but it did not go over well so hopefully tomorrow we can get it and send it out to France to be tested. Once we get the results of the test we will know if we have to wait until Kayli has been on the diet for 30 days to start the hyperbaric treatments or if she is not on the autism spectrum then she can start them immediately and we can take her off of the diet.
So after 10 years of not having really any hope of being able to help Kayli develop further than where she is, we can start thinking about what might happen.
And it might not help her at all, BUT it is nice to have a little hope for once.
Subscribe to:
Comments (Atom)
