Two wonderful earth angels of Taegan's, Jan Pulsford and Charles Green, have generously made several of their Christmas tracks available for download until January 6th, 2007. The idea is to download and donate. We are grateful for every dollar donated, whether you donate $1 or $10 etc. per song, all proceeds will go to Taegan's fund.
The Christmas music can be downloaded here:
http://www.musicallmusic.com/angels4taegan_music/
To hear more tunes from the talented Jan Pulsford, click here:
http://www.myspace.com/janpulsford
or click here:
http://www.myspace.com/athenablue
To hear more beautiful music by Charles Green, click here:
http://www.myspace.com/happycharlesmusic
Thank you to all of Taegan's angels here on earth, and happy holidays...
December 21, 2006
December 18, 2006
Parent Testimonials
These parent testimonials have brought me so much hope and excitement that Hyperbaric Oxygen Treatments could help Taegan as well... that I keep re-reading them every few months, when hope starts fleeting.
I re-read them tonight because I needed that 'boost' again... Taegan's spasticity has become worse over the last 2 weeks, possibly due to her having the flu. When she stands, she is completely up on her tip toes on her left foot. It has become difficult yet again to even get her brace to go on her foot. She hasn't been able to wear her night splint for longer than 2-3 hours at a time these past 2 weeks as well. Serial casting is likely to happen in February, perhaps sooner if her spasticity keeps worsening. I'm so anxious to get her the HBO treatments, so maybe we can avoid the whole issue of CASTING altogether!!!
Many of these testimonials below mention how HBO took away their childs' spasticity. Also, they talk of how their children became verbal and began speaking in sentences etc. Just the thought of Taegan being able to talk to me brings tears to my eyes... If I had a Christmas wish, it would be for Taegan to receive the HBO treatments... and all the other things would fall into place... I just know it!
Testimonals taken from this web site: http://miraclemountain.homestead.com/HBOTforCP.html
Hi everyone:
I had to post this tonight. Today Michael and I were at his private OT appointment. I had previously spoken with his OT about the possiblity of us doing HBO and she informed me that the kid that she sees ahead of
Michael was currently in Canada receiving treatments. Well, today was Katie's first day back after 120 treatments. All I can say is that HBO is truly a
miracle. This little girl is 5 years old. Previous to HBO, she did not walk, talk, communicate or really do much of anything else. As her mother expressed to me today, she was pretty much in a vegetative state. She was full-term, suffered a stroke inutero, has pretty severe CP. Well, she is now walking, talking, running, playing, you name it. I could not believe it! I was so very glad to see this with my own eyes! And, her mom attributes all of this to HBO. How is that for a success story!
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
I am a pediatrician who has a four year old daughter with severe cerebral palsy. She has been receiving physical and occupational therapy from the age of 6 months. At the age of 3 she could not sit up unsupported. She was able to say about 35 words with difficulty. She screamed whan she was hungry and would say "miek" when she was thirsty. A distant relative had suffered a stroke which left him completely blind. He was able to regain some vision after hyperbaric oxygen therapy. He called me to tell me that he saw children like mine at the center and encouraged me to take my daughter there. I procrastinated because I wanted to see if there was any data that showed HBOT would work. I then finally enrolled my daughter in a study. Within the first week of HBOT
treatments my daughter was able to say "Boos Coos" pertaining to "Blues Clues" a children tv show and incredibly she did for 45 minutes. For me that was a small miracle. She had never focused enough before to watch a tv program. With the completion of 80 treatments, she speaks well over 1000 words and can say 4-5 word sentences. She can indicate her needs and is completely toilet trained. Currently she continues to make improvments daily. I have noticed that when she is receiving treatments she appears to be more and more focused and is able to learn much more. I personally believe that HBOT has made a huge difference in the quality of her life and ours. I believe in it so much that
I wanted to make this treatment available to other children and families. My new facility Hudson Valley Hyperbarics in Brewster, NY has the capability to treat all kinds of CP cases and medical conditions. Please feel free to contact me via email PINAMD@aol.com to discuss any of your childrens or families conditions.
Sincerely,
Jo Feingold, M.D.
Medical Director Hudson Valley Hyperbarics
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Hello everyone,
My name is Kim, my daughter is Gabriella, (www.gabbyrose.org). Gabby is 5 yrs old and was injured by the Hep B vaccine she recieved at one day old. She was diagnoised with static encephalopathy, global developmental delay, cerebral plasy, PDD, leaky gut, ect, ect, ect. She has had over 120 HBOT. This
wonderful therapy is like a miracle for her. She is now able to drink thru a
straw, eye contact improved, gross motor and fine motor skills improved, she can get into a standing position by herself, her balance has improved greatly, she can walk unassisted in the grass and other surfaces, she is climbing on the
furniture and the kitchen table! She is starting to perspire like a normal
child, she initiated and said new words, she is making more sounds and is trying to sing, dance and jump. I was wondering if there is a way that you know of to share information about this fantastic treatment. There are soooo many children and adults who can benefit from it. Has anyone written editorials for the newspaper or found another way to really get the word out about this treatment. It seems it is usually the last thing people try and sometimes parents are so involved with just managing their children and their circumstances that they don't have the time to research this option. If we could really 'go public' (major newspaper, TV, radio) with this, it would make it more available to people and the more people ask for HBOT, perhaps this will push insurance companies to cover the 'off label' diagnoises that can so benefit from HBOT.
Any ideas?
Thanks,
Kim Waldele
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
We just returned home from a doctors appt. We have been seeing the
opthamalogist before and after each 40 sessions of HBO. This is Patrick's 3rd
set of 40 to complete. Here are his documented results:
1st 40: Cortical blindness upgrade to high use of peripheral vision amd
severe cortical impairments in all central fields of vision
2nd 40: Went from strictly liquid diet to 3 meals aday. Gained 15lbs. grew
8'' in 1 10mths following. End of all gastric issues, removal of GI tube, and
all medication.
3rd set: Eye doctor said "Patrick no longer need to wear his glasses, 60%
improvement since Dec.2000 in farsightedness, normal focusing, responses all
normal in all tests!!!!!!!
Currently we are fundraising to finance the next set of 40 treatments. HBO
has been nothing short of a miracle for Patrick! I hope to hear from others
about their experiences. Jacki mom to Sean 11, Kathleen 8, and Patrick 4 our
vaccine injured angel.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
We have done nearly 100 treatments. We did a set of 40, doing two a day for
20 days with one two-day break in there. We saw amazing results. Bethany was
8 at the time. She had just had a shunt blockage, a very bad one and was not
walking, talking, anything. After the forty treatments, she was walking again, better than ever and had begun talking in sentences (before she had only one or two word sentences). We saw incredible results with her sensitivities- she was able to stand a lot more noise, confusion, etc. without a meltdown. A few months later we did 20 more sessions, two a day for 10 days straight. This time, we saw more lessening of the sensory problems. She went from a child who could not stand to have her hands touched, to a little girl who wanted her nails painted! We later did 10 sessions, and saw no gains- I would not recommend doing only 10 at a time. We did 20 more later and saw more decrease in spasticity and more cognitive gains. Before we ever started treatments, I checked with our pediatrician about possible side effects. He assured me that HBOT is 100% safe- he also is a non believer in it, but can't deny the benefits we have seen from it!
********, mom to ********,10, spastic diplegia, hydrocephalus, CVI, optic
nerve atrophy, seizures and autism and *******, 12, nda from Alberta Canada
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
My daughter is 16 months old and I have recently finished 40 HBO
treatments. She had increased tone in her legs and low tone in her trunk.
Now, the PT has stated Anna Kate has lost the tone in her legs. She is now
sitting unassisted, will transfer from sitting to crawling and return to a sitting position. She is pulling up and can ambulate slowly behing a push toy ,however, balance is still a problem in standing upright position. She
now plays with toys without releasing them, is much more curious, claps
hands, motions bye,bye. Before HBO, she had to be propped in sitting position, could not hold toys without releasing them and she appeared sleepy and tired much of the time. I am amazed at the results we have seen.
We are taking a break presently but will return in about a month for more
treatments.
K******
I re-read them tonight because I needed that 'boost' again... Taegan's spasticity has become worse over the last 2 weeks, possibly due to her having the flu. When she stands, she is completely up on her tip toes on her left foot. It has become difficult yet again to even get her brace to go on her foot. She hasn't been able to wear her night splint for longer than 2-3 hours at a time these past 2 weeks as well. Serial casting is likely to happen in February, perhaps sooner if her spasticity keeps worsening. I'm so anxious to get her the HBO treatments, so maybe we can avoid the whole issue of CASTING altogether!!!
Many of these testimonials below mention how HBO took away their childs' spasticity. Also, they talk of how their children became verbal and began speaking in sentences etc. Just the thought of Taegan being able to talk to me brings tears to my eyes... If I had a Christmas wish, it would be for Taegan to receive the HBO treatments... and all the other things would fall into place... I just know it!
Testimonals taken from this web site: http://miraclemountain.homestead.com/HBOTforCP.html
Hi everyone:
I had to post this tonight. Today Michael and I were at his private OT appointment. I had previously spoken with his OT about the possiblity of us doing HBO and she informed me that the kid that she sees ahead of
Michael was currently in Canada receiving treatments. Well, today was Katie's first day back after 120 treatments. All I can say is that HBO is truly a
miracle. This little girl is 5 years old. Previous to HBO, she did not walk, talk, communicate or really do much of anything else. As her mother expressed to me today, she was pretty much in a vegetative state. She was full-term, suffered a stroke inutero, has pretty severe CP. Well, she is now walking, talking, running, playing, you name it. I could not believe it! I was so very glad to see this with my own eyes! And, her mom attributes all of this to HBO. How is that for a success story!
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
I am a pediatrician who has a four year old daughter with severe cerebral palsy. She has been receiving physical and occupational therapy from the age of 6 months. At the age of 3 she could not sit up unsupported. She was able to say about 35 words with difficulty. She screamed whan she was hungry and would say "miek" when she was thirsty. A distant relative had suffered a stroke which left him completely blind. He was able to regain some vision after hyperbaric oxygen therapy. He called me to tell me that he saw children like mine at the center and encouraged me to take my daughter there. I procrastinated because I wanted to see if there was any data that showed HBOT would work. I then finally enrolled my daughter in a study. Within the first week of HBOT
treatments my daughter was able to say "Boos Coos" pertaining to "Blues Clues" a children tv show and incredibly she did for 45 minutes. For me that was a small miracle. She had never focused enough before to watch a tv program. With the completion of 80 treatments, she speaks well over 1000 words and can say 4-5 word sentences. She can indicate her needs and is completely toilet trained. Currently she continues to make improvments daily. I have noticed that when she is receiving treatments she appears to be more and more focused and is able to learn much more. I personally believe that HBOT has made a huge difference in the quality of her life and ours. I believe in it so much that
I wanted to make this treatment available to other children and families. My new facility Hudson Valley Hyperbarics in Brewster, NY has the capability to treat all kinds of CP cases and medical conditions. Please feel free to contact me via email PINAMD@aol.com to discuss any of your childrens or families conditions.
Sincerely,
Jo Feingold, M.D.
Medical Director Hudson Valley Hyperbarics
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Hello everyone,
My name is Kim, my daughter is Gabriella, (www.gabbyrose.org). Gabby is 5 yrs old and was injured by the Hep B vaccine she recieved at one day old. She was diagnoised with static encephalopathy, global developmental delay, cerebral plasy, PDD, leaky gut, ect, ect, ect. She has had over 120 HBOT. This
wonderful therapy is like a miracle for her. She is now able to drink thru a
straw, eye contact improved, gross motor and fine motor skills improved, she can get into a standing position by herself, her balance has improved greatly, she can walk unassisted in the grass and other surfaces, she is climbing on the
furniture and the kitchen table! She is starting to perspire like a normal
child, she initiated and said new words, she is making more sounds and is trying to sing, dance and jump. I was wondering if there is a way that you know of to share information about this fantastic treatment. There are soooo many children and adults who can benefit from it. Has anyone written editorials for the newspaper or found another way to really get the word out about this treatment. It seems it is usually the last thing people try and sometimes parents are so involved with just managing their children and their circumstances that they don't have the time to research this option. If we could really 'go public' (major newspaper, TV, radio) with this, it would make it more available to people and the more people ask for HBOT, perhaps this will push insurance companies to cover the 'off label' diagnoises that can so benefit from HBOT.
Any ideas?
Thanks,
Kim Waldele
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
We just returned home from a doctors appt. We have been seeing the
opthamalogist before and after each 40 sessions of HBO. This is Patrick's 3rd
set of 40 to complete. Here are his documented results:
1st 40: Cortical blindness upgrade to high use of peripheral vision amd
severe cortical impairments in all central fields of vision
2nd 40: Went from strictly liquid diet to 3 meals aday. Gained 15lbs. grew
8'' in 1 10mths following. End of all gastric issues, removal of GI tube, and
all medication.
3rd set: Eye doctor said "Patrick no longer need to wear his glasses, 60%
improvement since Dec.2000 in farsightedness, normal focusing, responses all
normal in all tests!!!!!!!
Currently we are fundraising to finance the next set of 40 treatments. HBO
has been nothing short of a miracle for Patrick! I hope to hear from others
about their experiences. Jacki mom to Sean 11, Kathleen 8, and Patrick 4 our
vaccine injured angel.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
We have done nearly 100 treatments. We did a set of 40, doing two a day for
20 days with one two-day break in there. We saw amazing results. Bethany was
8 at the time. She had just had a shunt blockage, a very bad one and was not
walking, talking, anything. After the forty treatments, she was walking again, better than ever and had begun talking in sentences (before she had only one or two word sentences). We saw incredible results with her sensitivities- she was able to stand a lot more noise, confusion, etc. without a meltdown. A few months later we did 20 more sessions, two a day for 10 days straight. This time, we saw more lessening of the sensory problems. She went from a child who could not stand to have her hands touched, to a little girl who wanted her nails painted! We later did 10 sessions, and saw no gains- I would not recommend doing only 10 at a time. We did 20 more later and saw more decrease in spasticity and more cognitive gains. Before we ever started treatments, I checked with our pediatrician about possible side effects. He assured me that HBOT is 100% safe- he also is a non believer in it, but can't deny the benefits we have seen from it!
********, mom to ********,10, spastic diplegia, hydrocephalus, CVI, optic
nerve atrophy, seizures and autism and *******, 12, nda from Alberta Canada
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
My daughter is 16 months old and I have recently finished 40 HBO
treatments. She had increased tone in her legs and low tone in her trunk.
Now, the PT has stated Anna Kate has lost the tone in her legs. She is now
sitting unassisted, will transfer from sitting to crawling and return to a sitting position. She is pulling up and can ambulate slowly behing a push toy ,however, balance is still a problem in standing upright position. She
now plays with toys without releasing them, is much more curious, claps
hands, motions bye,bye. Before HBO, she had to be propped in sitting position, could not hold toys without releasing them and she appeared sleepy and tired much of the time. I am amazed at the results we have seen.
We are taking a break presently but will return in about a month for more
treatments.
K******
December 2, 2006
Taegan Update
Hello everyone! Just wanted to update you on how things are going. We're just shy of reaching the halfway mark on our fundraising goal of $4,400 for Taegan to be able to go to the Cole Center For Healing in Cincinnati. Thank you again to everyone who has donated to Taegan's fund.
Taegan was sick twice during the month of November.... both times with colds. Thankfully, her regressions haven't been as significant as they have been during past illnesses.
She is scheduled for a sleep study at the children's hospital on December 19th. The previous two appointments were canceled, once due to the lab over booking patients, and the most recent cancelation due to Taegan's illness.
Taegan is still adjusting to the night splint... it makes her leg/foot very hot and sweaty (and probably makes it uncomfortable), but this week she has been able to keep it on all night long for the past 3 days.
Sleeping has been especially challenging for Taegan for the past 6 weeks. I'm not sure what is causing this disturbance in her normal sleep pattern (usually she will sleep for 4-5 hour stretches and then awakens.) In recent weeks, she sleeps 2-4 hours and is up for 3+ hours before falling back to sleep. She has been quite grouchy and appears sleepy much of the time, and yet will not fall asleep! She's gotten some relief while taking Dallergy to help with congestion, as it makes her drowsy. She has been able to sleep 5-6 hours while taking that medication.
Last week, I took Taegan for an appointment with a physiatrist. A physiatrist is a medical doctor who specializes in the area of physical medicine and rehabilitation. It was a very informative meeting for me.
The physiatrist has recommended we meet with a neuropsychologist as well. They will be calling me to schedule the appointment for the beginning of the year.
The physiatrist has asked that I track down all of Taegan's blood work records from the NICU to present day. She is concerned that Taegan may have a genetic syndrome that is linked with a flat nose bridge and difficulty with bowel habits. This isn't the first time a 'genetic syndrome' possibility has been discussed. Taegan's GI specialist sent her for chromosomal testing in 2005. Those tests came back negative. I am not sure what the test was called that they gave her, so I especially need to track that one down so it is not repeated ($$$$!!!!)
The physiatrist also mentioned the possibility of serial casting in a few months, if the night splint and her day time braces do not help to improve the flexibility of her left foot/ankle. Also, she is concerned with Taegan's hips... her legs appear to be internally rotating (giving the appearance of pigeon toed walking etc.) She mentioned a device that goes on like a belt and has several straps that would go down and around Taegan's legs that would pull her legs out of the inversion and align the head of the femur bone into the hip sockets better. Before this device might be ordered, the physiatrist has asked that we have Taegan's hips X-rayed again to rule out dysplasia and some other abnormalities. Taegan's X-rays when she was 13 months old showed no signs of dysplasia at that time. She said that it was important to have hip X-rays done every 6 months until Taegan's 5th birthday.
The physiatrist has also ordered a PH probe be placed down Taegan's throat during the duration of her sleep study on December 19th. This is to determine whether she is still suffering from reflux, as this could be a possibility for her sleeplessness and irregular sleep patterns. Also, she has ordered a EEG be performed during the sleep study as well. This will show whether Taegan is having seizures during sleep, which also could be disrupting her sleep cycle/pattern.
It was reassuring to hear the physiatrist speak of how other parents of CP children complain about sleep issues. Apparently, the CP brain has difficulty transitioning from one activity to another and also isn't able to recognize the cues for upcoming transitions. She explained we have to train the brain. We are to create a schedule. For example, before Taegan's bedtime, we should do the same activities every night in the same order. So, we will have a bath, brush teeth, read a book and go to bed. This is to be the same pattern every time, so that her brain is trained or 'cued' when to begin to calm down and prepare for sleep.
The physiatrist mentioned that many CP children require medication for sleep, as their brains simply cannot fall into this pattern to settle down enough to sleep. I had been trying melatonin with Taegan since the summer time, and it seemed to have little effect. The physiatrist mentioned that I probably wasn't giving her a high enough dosage, as CP brains require a much higher dosage to be effective.
The increased dosage has seemed to help, but it doesn't keep her asleep. It just helps her to fall asleep. At least with the melatonin, she doesn't lay in her bed for 2+ hours babbling and squirming around as she had been.
We are also supposed to be making an appointment with a new neurologist so that he/she might be able to explain the MRI results to us better as well as look into the concern of absent mal seizures (petit mal seizures.)
Taegan continues to do well in her therapies. This week she finishes up her fall session of hippotherapy down at PALS in Bloomington. She will begin sessions again in the spring. She will continue her hippotherapy in Carmel at TherAplay throughout the winter, as it is a heated, indoor facility. She absolutely loves the horses. It brings me great joy to see her smiling and clapping while riding the horses. She is very vocal afterwards as well. I think there is magnificent healing that occurs between animals and humans... I'd love to one day take Taegan for dolphin assisted therapy. (It actually has always been a dream of mine, to become a dolphin assisted therapy therapist!)
The nutritionist/dietitian will be re-evaluating Taegan on the 14th due to weight loss and difficulty with eating over the last 2+ months. Taegan refuses foods she previously has devoured (i.e. spaghetti, macaroni & cheese, peaches, pears, carrots.) Her diet mainly consists of oatmeal, Nutra Grain Cereal bars, green beans, mashed potatoes and Teddy Grahams. On any given day, she may refuse even these foods! She prefers a liquid diet, so I've been increasing her Pediasure supplement daily.
Taegan has noticeably become more frustrated with her inability to communicate effectively. The speech therapist has commented on this as well. We've tried sign language and augmentatives (pictures) and so far haven't had much success. We're discussing the possibility of button switches, where she can press a button and a pre-recorded message (by whomever, mommy, daddy, grandma etc.) will talk for her. I'm hoping this will help with Taegan's feeding issues. Hopefully it will allow her to communicate a choice of what she wishes to eat at meal time. Simple pointing between two choices of food has not worked. It just breaks my heart when she becomes so frustrated.
I hope we can get her to the Cole Center For Healing in early 2007... perhaps many of these issues will be resolved as a result. We can only hope....
Taegan was sick twice during the month of November.... both times with colds. Thankfully, her regressions haven't been as significant as they have been during past illnesses.
She is scheduled for a sleep study at the children's hospital on December 19th. The previous two appointments were canceled, once due to the lab over booking patients, and the most recent cancelation due to Taegan's illness.
Taegan is still adjusting to the night splint... it makes her leg/foot very hot and sweaty (and probably makes it uncomfortable), but this week she has been able to keep it on all night long for the past 3 days.
Sleeping has been especially challenging for Taegan for the past 6 weeks. I'm not sure what is causing this disturbance in her normal sleep pattern (usually she will sleep for 4-5 hour stretches and then awakens.) In recent weeks, she sleeps 2-4 hours and is up for 3+ hours before falling back to sleep. She has been quite grouchy and appears sleepy much of the time, and yet will not fall asleep! She's gotten some relief while taking Dallergy to help with congestion, as it makes her drowsy. She has been able to sleep 5-6 hours while taking that medication.
Last week, I took Taegan for an appointment with a physiatrist. A physiatrist is a medical doctor who specializes in the area of physical medicine and rehabilitation. It was a very informative meeting for me.
The physiatrist has recommended we meet with a neuropsychologist as well. They will be calling me to schedule the appointment for the beginning of the year.
The physiatrist has asked that I track down all of Taegan's blood work records from the NICU to present day. She is concerned that Taegan may have a genetic syndrome that is linked with a flat nose bridge and difficulty with bowel habits. This isn't the first time a 'genetic syndrome' possibility has been discussed. Taegan's GI specialist sent her for chromosomal testing in 2005. Those tests came back negative. I am not sure what the test was called that they gave her, so I especially need to track that one down so it is not repeated ($$$$!!!!)
The physiatrist also mentioned the possibility of serial casting in a few months, if the night splint and her day time braces do not help to improve the flexibility of her left foot/ankle. Also, she is concerned with Taegan's hips... her legs appear to be internally rotating (giving the appearance of pigeon toed walking etc.) She mentioned a device that goes on like a belt and has several straps that would go down and around Taegan's legs that would pull her legs out of the inversion and align the head of the femur bone into the hip sockets better. Before this device might be ordered, the physiatrist has asked that we have Taegan's hips X-rayed again to rule out dysplasia and some other abnormalities. Taegan's X-rays when she was 13 months old showed no signs of dysplasia at that time. She said that it was important to have hip X-rays done every 6 months until Taegan's 5th birthday.
The physiatrist has also ordered a PH probe be placed down Taegan's throat during the duration of her sleep study on December 19th. This is to determine whether she is still suffering from reflux, as this could be a possibility for her sleeplessness and irregular sleep patterns. Also, she has ordered a EEG be performed during the sleep study as well. This will show whether Taegan is having seizures during sleep, which also could be disrupting her sleep cycle/pattern.
It was reassuring to hear the physiatrist speak of how other parents of CP children complain about sleep issues. Apparently, the CP brain has difficulty transitioning from one activity to another and also isn't able to recognize the cues for upcoming transitions. She explained we have to train the brain. We are to create a schedule. For example, before Taegan's bedtime, we should do the same activities every night in the same order. So, we will have a bath, brush teeth, read a book and go to bed. This is to be the same pattern every time, so that her brain is trained or 'cued' when to begin to calm down and prepare for sleep.
The physiatrist mentioned that many CP children require medication for sleep, as their brains simply cannot fall into this pattern to settle down enough to sleep. I had been trying melatonin with Taegan since the summer time, and it seemed to have little effect. The physiatrist mentioned that I probably wasn't giving her a high enough dosage, as CP brains require a much higher dosage to be effective.
The increased dosage has seemed to help, but it doesn't keep her asleep. It just helps her to fall asleep. At least with the melatonin, she doesn't lay in her bed for 2+ hours babbling and squirming around as she had been.
We are also supposed to be making an appointment with a new neurologist so that he/she might be able to explain the MRI results to us better as well as look into the concern of absent mal seizures (petit mal seizures.)
Taegan continues to do well in her therapies. This week she finishes up her fall session of hippotherapy down at PALS in Bloomington. She will begin sessions again in the spring. She will continue her hippotherapy in Carmel at TherAplay throughout the winter, as it is a heated, indoor facility. She absolutely loves the horses. It brings me great joy to see her smiling and clapping while riding the horses. She is very vocal afterwards as well. I think there is magnificent healing that occurs between animals and humans... I'd love to one day take Taegan for dolphin assisted therapy. (It actually has always been a dream of mine, to become a dolphin assisted therapy therapist!)
The nutritionist/dietitian will be re-evaluating Taegan on the 14th due to weight loss and difficulty with eating over the last 2+ months. Taegan refuses foods she previously has devoured (i.e. spaghetti, macaroni & cheese, peaches, pears, carrots.) Her diet mainly consists of oatmeal, Nutra Grain Cereal bars, green beans, mashed potatoes and Teddy Grahams. On any given day, she may refuse even these foods! She prefers a liquid diet, so I've been increasing her Pediasure supplement daily.
Taegan has noticeably become more frustrated with her inability to communicate effectively. The speech therapist has commented on this as well. We've tried sign language and augmentatives (pictures) and so far haven't had much success. We're discussing the possibility of button switches, where she can press a button and a pre-recorded message (by whomever, mommy, daddy, grandma etc.) will talk for her. I'm hoping this will help with Taegan's feeding issues. Hopefully it will allow her to communicate a choice of what she wishes to eat at meal time. Simple pointing between two choices of food has not worked. It just breaks my heart when she becomes so frustrated.
I hope we can get her to the Cole Center For Healing in early 2007... perhaps many of these issues will be resolved as a result. We can only hope....
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