April 9, 2011
Chloe saw the neurologist at the end of March to see what can be done with what her doctor called paroxysmal attacks related to her unknown neuromuscular disorder that she was born with. The doctor was very attentive and had Chloe do many things and follow directions. The doctor prescribed slightly stronger then an over the counter pain medication and a supplement that a gland in her brain should be releasing to get her ready to sleep. Chloe found the supplement and the slightly stronger medication to be very helpful and has a much faster schedule then we ever thought possible. So far we have a lot less of the muscle twitching with moments of blank stares and stammering so we continue to work on her arms and hands responding more coordinated to a given task .The more she uses the supplement and pain medication the more the symptoms may improve has been suggested. If this happens it would be a nice bonus. She will see the neurologist every four weeks med adjustments.
Now, I am beginning to explore the possibility of a part time job with a possible job coach but need to research this subject further.
Saturday, April 9, 2011
Thursday, February 10, 2011
Recovery= Learn by doing!
Chloe is recovering from a floppy infant condition which is caused by an unknown neurological disorder. Her recovery is a combination of proper medical intervention and physical exercise, which keeps the gross motor and fine motor skills developing. She is still working on her left shoulder to use the proper muscles that should be used. Her right ear has tinnitus and she will probably need to wear an ear plug in it most of the time. If that ear is exposed to loud noise the tinnitus could become louder in the ear for a period of time.
Chloe will keep trying to get the left shoulder to work properly through exercises with the personal adaptive trainer twice weekly and her individual workouts. Her music therapy where she practices piano, alto and soprano recorder also helps her to work on better control of both arms. Her typing is around 25 words per minute which is improving control of fingers, hands and arm. Chloe has good vision according to her eye check up annually but her doctor suggested glare-resistant glasses and we found she is able to do reading and other fine motor activities better with these glasses on.
Chloe language development had gaps or missing areas. She knew her nouns but adverbs and verbs seem to be missing at first. Speech therapists identified the areas and gave us homework. Rosetta Stone Spanish CD helped her straight out her English by learning Spanish words to everyday items and actions through these fun activities. Her reading skills help demonstrate the different parts of sentence structure, her typing program also demonstrated proper sentence structure. Chloe learned how to spell from these exercises. Concepts (more/less, on time/late, and others) are worked on in music therapy and in community activities we do.
With shoulders and arms not working together the eyes and the hands not working together seemed to be a logical issue. Music therapy works on note recognition and playing music works on eye- hand coordination issues. Noise in one ear is a distraction too. So Chloe wears an ear plug in her right ear and tries to rely on what she hears coming in from the left. This is the last stage, for years she wore ear plugs in both ears till she was ready to try going it with one ear plug.
Chloe will begin volunteering at a Thrift store in March. The activities she will do is folding, hanging clothes and washing dishes are good non-weighted activities to keep the arms working together. These are similar activities her orthopedic doctor suggested she works on. It will also be a work atmosphere so working on work concepts and work discussions will be other objectives.
February 10, 2011
This is our progress to this point! Jacquie Skubal and Chloe Anderson
Chloe will keep trying to get the left shoulder to work properly through exercises with the personal adaptive trainer twice weekly and her individual workouts. Her music therapy where she practices piano, alto and soprano recorder also helps her to work on better control of both arms. Her typing is around 25 words per minute which is improving control of fingers, hands and arm. Chloe has good vision according to her eye check up annually but her doctor suggested glare-resistant glasses and we found she is able to do reading and other fine motor activities better with these glasses on.
Chloe language development had gaps or missing areas. She knew her nouns but adverbs and verbs seem to be missing at first. Speech therapists identified the areas and gave us homework. Rosetta Stone Spanish CD helped her straight out her English by learning Spanish words to everyday items and actions through these fun activities. Her reading skills help demonstrate the different parts of sentence structure, her typing program also demonstrated proper sentence structure. Chloe learned how to spell from these exercises. Concepts (more/less, on time/late, and others) are worked on in music therapy and in community activities we do.
With shoulders and arms not working together the eyes and the hands not working together seemed to be a logical issue. Music therapy works on note recognition and playing music works on eye- hand coordination issues. Noise in one ear is a distraction too. So Chloe wears an ear plug in her right ear and tries to rely on what she hears coming in from the left. This is the last stage, for years she wore ear plugs in both ears till she was ready to try going it with one ear plug.
Chloe will begin volunteering at a Thrift store in March. The activities she will do is folding, hanging clothes and washing dishes are good non-weighted activities to keep the arms working together. These are similar activities her orthopedic doctor suggested she works on. It will also be a work atmosphere so working on work concepts and work discussions will be other objectives.
February 10, 2011
This is our progress to this point! Jacquie Skubal and Chloe Anderson
Thursday, October 28, 2010
Story continues
This is a 400 summary of Chloe's recovery journey:
As our daughter got her environmental, pollen, food allergies and asthma under control with diet and medication her pediatrician kept an eye on these issues but also introduced us to pharmaceutical grade fish oil (special ratio of oils). It is reasonable priced and delivered to our home monthly. The theory behind this was to increase brain conductivity and exercise would improve Chloe abilities.
Chloe was born 18 years ago with a neurological disorder called “floppy infant” caused by extremely low tone and rapid growth. Chloe had to work at achieving all her milestone by physical, occupational and speech therapies. These therapies were to give us suggestions on what we needed to keep working on as homework, a daily routine we followed up with at home.
This August we saw an orthopedic doctor who took many x-rays of her shoulders. What he said she did was to get her right shoulder joint working correctly but the left shoulder is still not using the small core muscles under the large muscles. He suggested that if she got the right shoulder working with exercise then she can do the left the same way: walking stretching exercises and ball activities (basket ball, soccer). This was a remarkable that the shoulders started working with just exercise so maybe the pharmaceutical grade fish oil was a help.
Chloe’s arms and shoulders are steadily improving. She is presently working on her GED in the morning. Two afternoons a week she works with a personal trainer, one day a week she works with a music therapist and at least 2 days a week she works out on her own. She has always worked on her fine motor skills: playing piano and recorder also she is improving her typing speed. Chloe was doing this even when here shoulders weren’t able to do gross motor activities like raising her arm over her head.
So how much has been achieved with just exercise or the fish oil and exercise we may never know. We are just grateful that it is working!
As our daughter got her environmental, pollen, food allergies and asthma under control with diet and medication her pediatrician kept an eye on these issues but also introduced us to pharmaceutical grade fish oil (special ratio of oils). It is reasonable priced and delivered to our home monthly. The theory behind this was to increase brain conductivity and exercise would improve Chloe abilities.
Chloe was born 18 years ago with a neurological disorder called “floppy infant” caused by extremely low tone and rapid growth. Chloe had to work at achieving all her milestone by physical, occupational and speech therapies. These therapies were to give us suggestions on what we needed to keep working on as homework, a daily routine we followed up with at home.
This August we saw an orthopedic doctor who took many x-rays of her shoulders. What he said she did was to get her right shoulder joint working correctly but the left shoulder is still not using the small core muscles under the large muscles. He suggested that if she got the right shoulder working with exercise then she can do the left the same way: walking stretching exercises and ball activities (basket ball, soccer). This was a remarkable that the shoulders started working with just exercise so maybe the pharmaceutical grade fish oil was a help.
Chloe’s arms and shoulders are steadily improving. She is presently working on her GED in the morning. Two afternoons a week she works with a personal trainer, one day a week she works with a music therapist and at least 2 days a week she works out on her own. She has always worked on her fine motor skills: playing piano and recorder also she is improving her typing speed. Chloe was doing this even when here shoulders weren’t able to do gross motor activities like raising her arm over her head.
So how much has been achieved with just exercise or the fish oil and exercise we may never know. We are just grateful that it is working!
Saturday, August 21, 2010
Orthopedic Doctor appointmentt.
Wednesday Chloe got a number of ex rays done on both shoulders before the appointment. The doctor showed us her ex-rays and described what he saw. He said the the shoulder joint is the most complicated joint in the body and there are small muscles that hold the shoulder joint together covered by larger muscles. The bone structure looks normal but "sloppy" . He suggested that Chloe's smaller muscles are working in her right shoulder but in the left shoulder she is using "cheater" muscles (different muscles then she should be using) that is why her shoulder is raised higher then her right.
When asked what we should do he said repetition exercises which will build endurance and hopefully wake up these smaller muscles in her left shoulder and we'll know if it works by her left shoulder will be more level with the right shoulder.
September Chloe will work with 2 adaptive personal trainers at the YMCA and with her musical therapist in an attempt to do what we did right shoulder to activate these muscles in her left shoulder too.
Monday, June 21, 2010
Chloe left shoulder June 21, 2010
I talked to Chloe's doctor who wanted me to bring in the notes on Natasha hip surgery in with us to see the orthopedic doctor so he compare it with what he finds in Chloe left shoulder. I started the process to get the information on Natasha's surgery so I can bring it with us. Everything takes time so an August appointment looks reasonable to get everything together.
Sunday, June 20, 2010
Chloe left shoulder issue! June 20, 2010
Chloe's occupational therapist has been seeing Chloe one time per week since March of 2010 to address decreased range of motion and muscle weakness of her upper extremities. She stated Chloe has made very good progress and has achieved nearly full range of motion of both right and left arms. However , her left shoulder has remained a concern. When passively ranging her left shoulder, mild tightness is felt when moving through horizontal abduction to overhead reaching. She continues to present with incresing weakness on this side and left shoulder elevation.
She recommends that Chloe's left shoulder be examined by a orthopedic doctor to rule out abnormalities of alignment. Our other daughter Natasha has two pins in her hip due to growth plate issues so I will ask the Orthopedic doctor if this could be a growth plate issue? Hopefully we will get answer in August to what this might be.
She recommends that Chloe's left shoulder be examined by a orthopedic doctor to rule out abnormalities of alignment. Our other daughter Natasha has two pins in her hip due to growth plate issues so I will ask the Orthopedic doctor if this could be a growth plate issue? Hopefully we will get answer in August to what this might be.
Saturday, April 17, 2010
The Journey continues.....
Our daughter, now 17 has a neurological disorder, which causes less than normal muscle tone and balance issues since birth. Primary issue in school was she cried often and it was questioned if it was because of pain. The pediatrician prescribed medication that controlled her asthma and allergies fluids and excess fluids in her body and a pharmaceutical quality Omega-3. Chloe has seen allergists who identified food and environmental allergies.
A physical therapist found her extensors muscles stronger then her muscles that flex and right side joints are loose. Chloe has tinnitus in her right ear and also right jaw, right arm, right eye and right hip issues. She complains of headaches and asthma that might be related too. She is also right side dominate and presently five feet nine which professional have said if she was only shorter or left handed she might have fewer difficulties. The physical therapist set up an exercise program that Chloe does daily.
Vision and hearing are important to balance, so our next stop was an eye appointment. The eye doctor found her vision to be good but she did have a glare issue. He recommended glare resistant glasses. We found not all glare resistant glasses are the same some helped the eye condition and others made her stumble and fall. Her headache improved and attention to her studies did too. When asked what hurts, she points to the left side of her forehead most of the time.
Braces that look like sleeves supporting her elbows improved her arm control. Her pediatrician referred her to an occupational therapist that suggested that these sleeve braces gave Chloe proproceptive feedback to her brain, which help her have better control of her elbows. Also noted that her right side shoulder was lower and smaller then the left but only noticeable when it was pointed out to me. Since Chloe started with the OT what is found out so far is her right arm and shoulder appears stronger then her left arm and shoulder and with these braces her ability to use both arms in fine motor activities is also steady improving. What ever is affecting the left shoulder and arm seems to be improving with weights, stretching and trunk rotation exercises.
Her asthma and headaches are under control even in this pollen season So it appears we are on the right track.
Chloe still sees a music therapist and adaptive trainer who help identify symptoms that we took to the physical therapist and occupational therapist to explain what we might be seeing. Chloe works on GED and computer programs that help her with her studies. This is her home schooling course work she is doing.
A physical therapist found her extensors muscles stronger then her muscles that flex and right side joints are loose. Chloe has tinnitus in her right ear and also right jaw, right arm, right eye and right hip issues. She complains of headaches and asthma that might be related too. She is also right side dominate and presently five feet nine which professional have said if she was only shorter or left handed she might have fewer difficulties. The physical therapist set up an exercise program that Chloe does daily.
Vision and hearing are important to balance, so our next stop was an eye appointment. The eye doctor found her vision to be good but she did have a glare issue. He recommended glare resistant glasses. We found not all glare resistant glasses are the same some helped the eye condition and others made her stumble and fall. Her headache improved and attention to her studies did too. When asked what hurts, she points to the left side of her forehead most of the time.
Braces that look like sleeves supporting her elbows improved her arm control. Her pediatrician referred her to an occupational therapist that suggested that these sleeve braces gave Chloe proproceptive feedback to her brain, which help her have better control of her elbows. Also noted that her right side shoulder was lower and smaller then the left but only noticeable when it was pointed out to me. Since Chloe started with the OT what is found out so far is her right arm and shoulder appears stronger then her left arm and shoulder and with these braces her ability to use both arms in fine motor activities is also steady improving. What ever is affecting the left shoulder and arm seems to be improving with weights, stretching and trunk rotation exercises.
Her asthma and headaches are under control even in this pollen season So it appears we are on the right track.
Chloe still sees a music therapist and adaptive trainer who help identify symptoms that we took to the physical therapist and occupational therapist to explain what we might be seeing. Chloe works on GED and computer programs that help her with her studies. This is her home schooling course work she is doing.
Subscribe to:
Posts (Atom)
