Finally got Chloe's Doctor to state that her bulging disc in her neck has caused a pinched nerve which has prevented her from developing her muscles, joints through exercise due to pain. Chloe is now wearing compression shirts which helps keeping her back movement from effecting the nerve and disc. The occupational therapist feels Chloe' needs to  exercise to allow her io strengthen her muscles  now that the disc is at a mild bulge state. Now that she has full range of motion and  greatly improved control of use her arms away from her body which will help her to improve in all functional movement . We hope the disc will stay at the mild state but  Chloe needs to finish develop the muscles around it.

 Author Learning center is helping me figure out how much data is enough and different ways I might present it so everyone can see all the twists and turns it took for us to get to this point

Chloe's was born a Floppy Infant! Medline Plus describes.Hypotonia is often a sign of abnormality in the case of a newborn or older infant, and may suggest the presence of central nervous system dysfunction, genetic disorders, or muscle disorders. Hypotonic infants rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent in the floppy infant with the head falling to the side, backward or forward. These are the problems Chloe had at birth. With supervised exercises and medical monitoring of her asthma and allergies we have gotten to this point. Thanks to Medline Plus for this description!

Finally some answers!

March 2012 How we got to this point! Chloe Anderson When we started this journey we kept hearing the shoulder is the most magnificent joint but still a mystery in our body. We heard this from: Chloe's primary doctor, an orthopedic doctor, neurologist, physical therapist and now occupational therapist we worked with or presently working with. Chloe was born low tone given the diagnosis of a floppy infant. She needed to do many exercises guided by professionals so she could walk by two years of age and to reach other milestones. Her health issues are asthma and allergies which are monitored and intervene if needed. Chloe needed to be home schooled due to to many allergy issues like varnishes and paint fumes at school. She spent about 7years in music therapy which kept her fingers moving but had the best use of her arms when the upper arm was tight to the sides of her chest. Her fine motor was working even though she could not raise her arms over her head with any degree of control. The farther away from her body Chloe had less and less control of her arms. Her doctor said he never thought of working on fine motor first. I responded that was all we could do! The first physical therapist used a neurological focus. He devise a exercise program that helped Chloe worked with the neurological issues that were causing her shoulders not to achieve the range of motions it should have. This was carried over to the YMCA where she worked with a personal trainer on a neurological focus work out. Chloe was able to hold her arms in a T- shape but still had little control of arms over her head. So she was referred to an Orthopedic doctor who took ex rays and said it appears to be more a muscle not a bone structure issue. He reminded us the shoulder is a most complicated joint in the body and some of the many core muscles are possible the issues. So Chloe went back to exercise 2-3 hours a week with a personal trainer and I work with her 1- 2 days also. Still Chloe arms would become weaker with any activity over her head or away from her body. So Chloe's doctor referred her to a neurologist who seeing the asymmetrical shoulder and prescribed a pain medication that seem to calm Chloe . The neurologist comment was;”Where is all that pain coming from?” She referred Chloe to a physical therapist who worked on the upper back issues to help lessen headaches from the orthopedic perspective. Chloe's therapy was quite different. Chloe for most of these session laid flat on her back and the physical therapist assisted her arms to move in different directions to rotate the shoulder joint as much as possible. Chloe was still obviously in pain and medication was not helping at times. So the Neurologist suggested an MRI which she failed the first MRI unable to lay on her back without waking up in pain. At Children's Hospital they able to use stronger medications so they were able to finish the MRI. It found a mild disc bulge at C6-C7 which makes sense why a topical pain patch in that area helps. The neurologist prescribed medication that blocks some of Chloe's pain receptors in her brain which seemed to help combine with the pain medication she was already on and referred her for therapy. Working on coordinated hand activities, the occupational therapist also used electro stimulation of Chloe's arms and we saw some improvement. Then the OT used this the electro stimulation just on her shoulder Chloe's, her left side of her neck, forehead and shoulder weaknesses improved . Her use of her hands and arms have greatly improved away from her body too. Her doctor suggested she try a postural control shirt and checked her gait finding the left leg is slightly longer than the right leg which might be corrected by just one insert in the right shoe. Chloe is 5 feet 8 inches tall and her T-shape body may of caused her to have to work doubly hard to over come these pinched nerve issues which caused her possible to be a floppy infant at birth.

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

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!

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.

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.