Thursday, December 29, 2011
HOLIDAY SEASON 2011 Update
December 21, Chloe had a MRI of her brain stem and complete spine. She had this done at Chldren's Hospital and they organized and handle it with precision that was amazing to watch.
December 22 , Chloe had the appointment with her neurologist. The neurologist said the results even surprise her, that everything appears normal. Considering Chloe's difficulties since birth and being on pain mediation she could only conclude it is a nerve issue. Peripheral nerves carry information from the brain. It maybe one group of nerves or all that effect the body. The neurologist suggested we try a mediation that contains a small dose of serotonin that she takes daily to help get information from the brain to her body working better.
Chloe's has complete control of her arms when the upper arm is right next to her body. The farther away from her body the less control of her arms and hands she has. Then you add the slightly elevated left shoulder this is all possibly due to peripheral neuropathy.
From the first day on this small dose of serotonin we have seen less hearing ans sight sensitivities. She is able to identify tingling or burning mainly in the left shoulder and forearm, hand and upper arm area.
Chloe will meet with the neurologist monthly to evaluate how the medication is working. She will continue working on getting her arms more usable. With this medication she is now taking half the pain mediation she has taken before and is giving us more information.
For Chloe, floppy infant may be this “peripheral neuropathy” which appears to be a treatable disorder!
Wish us continued Good luck! Keep us in your thoughts and prayers!
Skubal/Anderson Family
Monday, December 12, 2011
Chloe steadily improved with corrective exercises, so the nerves coming out from the spine appears to be the prime suspect in what is causing her problems. At birth, Chloe was diagnosed Floppy infant which was thought to be a neurological condition but in Chloe's case it could be a back issue!
We hope to be able to see what is causing the slightly elevated left shoulder and slightly twisted trunk with the MRI scan later this month. The shoulder elevation and trunk twisting has decreased but the pain Chloe experiences with stretching exercises is noticeable. We also hope the problem can be explain and figure out ways to lessen this discomfort..
Chloe has been seeing a neurologist for over a year. At the start she was unable to raise her arms over her head or out to the sides. Her left shoulder was using, what her physical therapist said, was all the wrong muscles. She continues to be plagued with headaches and pain but theyare less intense. The neurologist gave her stronger pain medication so she could tolerate rehabilitation of the shoulders and improve use of her arms. This is the point we are at. She has better control of shoulders and arms. She has little control of her hands when her arms are out stretched but can do complicated fine motor tasks when her arms are at her sides and palms are facing the table for the occupational therapist.
So the question is can Chloe hold down a job. The Neurologist said "We have to first understand the problem". So we went to the MRI clinic Chloe was asleep on her side with the sedation but when rolled on her back she woke up visibly in pain. This is why she is scheduled at the hospital so they can use general anesthesia if their sedation does not work either.
Problem: Chloe has arm, shoulder,headache and muscle, issues that are caused by a back issue of some kind. December 21 we hope to understand what kind of back issue and can it be fixed.
Then questions that will be answered after that?
Can it be fixed?
Is it a partial or total disability?
What kind of jobs should Chloe consider with this back issue.
Stay tune we are close to answers!
Wednesday, September 28, 2011
September 28, 2011
Recovery update!
Chloe’s physical therapy sessions helped her shoulder and arm muscles work together which improved her functional movements. Chloe is learning to use both her arms and shoulders in new ways, new neurological pathways can form. Chloe was discharged by Ryan her physical therapist, he reminded us if any problems come up to come back. Chloe has started the next stage of her treatment with her music therapist and personal trainer. They need to show Chloe what the shoulder joint can do and how to use it. So Music therapy does this through dance. Personal trainer will do it by working her arms over her head in different exercise positions. We will continue to check in with the neurologist and she will continue to monitor Chloe's progress.
Chloe saw the eye doctor this September. He was impressed with her response time and the ability to respond to directions given her. He stated her vision was excellent and her ability to follow his finger with her eyes has greatly improved. She is still having problems with being able to fix her eyes on a page and her problem with glare is still an issue too. We continue to work on eye hand coordination in typing, music and Spanish. We may need to work on longer reading periods and if Chloe works on longer pieces of music without stopping may also help.
Chloe is a kinesthetic learner and with her increased motor production may help to explain her improved note reading and problem solving skills. Reading and math are also improving. Chloe works independently for 3 hours each morning. I check her work when she completes a task and have noticed improved accuracy in all subjects too.
Monday, August 15, 2011
Update
August 16, 2011
As Chloe continues to work on her left shoulder with the advice of a physical therapist that uses an orthopedic approach to improve use of shoulders, scapulas and overall improved use of upper back, we are beginning to see some improvement but warned by the physical therapist it will take time.
Chloe is using certain machines without weights to activate use of all the left shoulder muscles correctly. With the use of correct shoulder muscles we are beginning to see improved control of headaches and ability to use less medication. That does not mean they are gone but catching them sooner and working through the headaches is steadily improving.
We hope to say this is the finally chapter but since birth, when she was diagnosed floppy infant that doctors stated was caused by some un-named neuromuscular disorder the possibility of more issues is always there. We will push ahead and have setbacks till we can stabilize this shoulder and glad the Doctor ordered extra pain medication when these setbacks happen.
Another issue we addressing with this neuromuscular disorder is Chloe’s ability to focus her eyes off mid-line. We rearranged the office area in which we moved the monitor slightly to the right. This made Chloe had to look to the right rather than straight ahead. With practice Chloe is steadily improving from 10 to 15 words a minute to her old speed of 25-30 words a minute but her accuracy is also improving too. This exercise is somehow improving her musical note recognition and being able to identify where they belong on a clef.
As Chloe continues to work on her left shoulder with the advice of a physical therapist that uses an orthopedic approach to improve use of shoulders, scapulas and overall improved use of upper back, we are beginning to see some improvement but warned by the physical therapist it will take time.
Chloe is using certain machines without weights to activate use of all the left shoulder muscles correctly. With the use of correct shoulder muscles we are beginning to see improved control of headaches and ability to use less medication. That does not mean they are gone but catching them sooner and working through the headaches is steadily improving.
We hope to say this is the finally chapter but since birth, when she was diagnosed floppy infant that doctors stated was caused by some un-named neuromuscular disorder the possibility of more issues is always there. We will push ahead and have setbacks till we can stabilize this shoulder and glad the Doctor ordered extra pain medication when these setbacks happen.
Another issue we addressing with this neuromuscular disorder is Chloe’s ability to focus her eyes off mid-line. We rearranged the office area in which we moved the monitor slightly to the right. This made Chloe had to look to the right rather than straight ahead. With practice Chloe is steadily improving from 10 to 15 words a minute to her old speed of 25-30 words a minute but her accuracy is also improving too. This exercise is somehow improving her musical note recognition and being able to identify where they belong on a clef.
Thursday, July 14, 2011
On going recovery!
July 15, 2011
Since March Chloe has seen a Neurologist who gave her strong pain medication which got rid of pain issues that caused her to be unfocused and distractible. The neurologist referred her to a physical therapist that works from the orthopedic approach. He worked with her left arm and shoulder that was slightly elevate then the other shoulder and gave us follow up exercises to do at home and at the YMCA.
Chloe has improved range of motion in both shoulders and the left shoulder is looking more like the right. It is Chloe’s physical therapist belief that Chloe has issues with muscles located below her neck by the spine between her shoulders. The focus of her exercises is addressing this area.
Presently, Chloe is seeing the neurologist every 3 months and she is on half of the pain medication she started with. Her range of motion in both shoulders have greatly improves and both shoulders are more symmetrical. Her physical therapist Ryan now will check her every 2 months.
Chloe also filled out an application to help fold towels before she sees her personal adaptive trainer. This is another activity suggested by her physical therapist and will help Chloe work on rehabbing her shoulders and work experience.
Last couple of months was very productive but these muscles need for her to stay very active at exercising that area. Chloe will continue to work on her muscle issues through exercising. This is another issue of her muscle disorder that Chloe was born with. Hopefully we now have the tools to keep progressing without regressing.
Jacquie (mom)
Since March Chloe has seen a Neurologist who gave her strong pain medication which got rid of pain issues that caused her to be unfocused and distractible. The neurologist referred her to a physical therapist that works from the orthopedic approach. He worked with her left arm and shoulder that was slightly elevate then the other shoulder and gave us follow up exercises to do at home and at the YMCA.
Chloe has improved range of motion in both shoulders and the left shoulder is looking more like the right. It is Chloe’s physical therapist belief that Chloe has issues with muscles located below her neck by the spine between her shoulders. The focus of her exercises is addressing this area.
Presently, Chloe is seeing the neurologist every 3 months and she is on half of the pain medication she started with. Her range of motion in both shoulders have greatly improves and both shoulders are more symmetrical. Her physical therapist Ryan now will check her every 2 months.
Chloe also filled out an application to help fold towels before she sees her personal adaptive trainer. This is another activity suggested by her physical therapist and will help Chloe work on rehabbing her shoulders and work experience.
Last couple of months was very productive but these muscles need for her to stay very active at exercising that area. Chloe will continue to work on her muscle issues through exercising. This is another issue of her muscle disorder that Chloe was born with. Hopefully we now have the tools to keep progressing without regressing.
Jacquie (mom)
Saturday, April 9, 2011
Neurologist evaluation
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.
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.
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
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