Happy 2013

Happy New Year! Hope 2013 is a much quieter year then the last two!
We needed to finish up some steps legally before I submitted the book to the final stage.

So far the treatment is promising some noticeable improvements. She is taking less pain medication about 50% less. She is able to identify when using her left arm  at the thrift store, the buzzing and tingling happens almost from the start. Pain is still there but medication and physical therapy has help to lessen it to the point where Chloe can now described what is happening without over reacting. We are now working on concepts that Chloe could not focus on due to the pain she was in, different, same and adapting to fast change in direction or incidents that happen like a box falling on the floor and she is expected  to help clean up. She is now able to listen to different for 30 mins on such topics history, conversations and climate. Also she is showing improve accuracy in all educational work she does at home.

This is where we started:
 Symptoms at Chloe’s birth were loose joints, low tone, and poor head control with difficulty initiate movement. Floppy infant is what this condition is called and could be caused by central nervous system dysfunction, or genetic disorders or even a muscle disorder. She had a general weakness on her left side of her neck and body so another possible reason was a stroke in the uterus.

Happy Holidays and now that we passed December 21, 2012 here is another update. We went  on tours of several YMCA around us. One works well for Chloe to start working on individualized workout so we will try that one first. I am thankful to the personal adaptive trainer who got Chloe familiar with the machines and how to use them.  So our goals for the present is to increase hours at the volunteer thrift store job and develop and independent  workout routine while we check out job possibilities and educational ones. While we do this we will be monitoring her upper back recovery to make sure everything stays where it should.

Here is another important part of Chloe's recovery that help to keep our cost down!

Since we found the doctor we could use, who had access to professionals in our HMO.  Then Chloe’s primary doctor could refer to as needed and they were already in our plan.  Rehabilitation service: Physical therapy, occupational therapy and speech therapy also we went  through our HMO, We tried several doctors before the one Chloe is now staying with till she reaches 21 year old. Chloe is seeing or has seen a neurologist, neuropsychologist, allergist and an orthopedic doctor for evaluations and recommendations.

I now have my book back from the editor and am reviewing on my computer and the editors are also showing why they suggest what they did so I have more reading then expected. Electronic transfer of large documents is new for me. Thankfully my husband has been very helpful in showing me how to work with different applications or be a trouble shooter for me when I need help. I already learned quite a bite from him so I am fairly independent but he is a help when needed..

I want to share a sensory system I learned through the research on this book. I never knew this one and how important it is.  

                             Somotasensory System

 This is the system that informs us about objects in our external environment through touch. It also let the brain know the position of the body parts (proprioception) through stimulation of muscles and joints. Another action of this system is to monitor the temperature of the body, external objects and environment. This system tells Chloe what is painful, itchy and tickling stimuli. All of these messages are sent along different anatomical pathways depending on information.

Chloe is being treated with serotonin to block pain receptors in the brain which help her put a bulging disc to a mild state in her neck and hopefully keep it there. She now is able to identify when she has pain. She is now working on her arms proprioception with swimming, exercise, typing and working at St. Vincent DePaul picking up, hanging up and straightening up the Thrift store. She is the” back seat driver” giving me directions to the usual places we go. Chloe now better connected with her body may make her personality change also. After patients go through accidents or whatever happens become paraplegic or quadriplegic their personalities undergo major changes because of not getting the feedback from their bodies anymore. 

 So here is the problems Chloe had since birth with a bulging disc in her neck that caused cranial headaches and had little ability to use her arms away from her body or over her head. Now that she has the disc back in place and arms are able to work over her head and away from her body, we are working on stamina and and endurance to get her into one day a job setting. This is what Chloe states is an important goal for her.

Here is another paragraph:

The doctor asked Chloe and me if she could try a medications to easy her anxiety and possible help her deal with pain better. Chloe said sure and I agreed to give the doctor updates in between Chloe’s appointments with her. The neurologist found through an MRI that Chloe has a now mild bugling in her neck that could explain a lot of her muscle, nerve and arm issues. The medication accelerates development of her upper back which gave her better control of her arms. We are pleasantly surprised at the results and hope to try another medication for focusing issues but we are aware not all medications we can be this lucky with but it is still worth a try!

Today we visited Chloe's neurologist in Menomee Falls to update her on Chloe's progress! Here is some of the report we gave her.
 Problems Chloe had since birth with a bulging disc in her neck that caused cranial headaches and had little ability to use her arms away from her body or over her head. Now that she has the disc back in place and arms are able to work over her head and away from her body, we are working on stamina and and endurance to get her into one day a job setting. This is what Chloe states is an important goal for her.

Physical Therapist: Chloe has two more sessions left. Chloe use of her arms has greatly improved and headaches have lessened. Her schedule has increased and she looks forward to the activities she does each day.  Her resting time has lessened between activities. Headaches have lessened but are still focus on the left side of her head over her temple but have had problems across her forehead.  Last two sessions will focus on at the top of her neck and working the muscles in that area.

YMCA personal trainer is now working on rowing machine, exercise ball and elliptical which  has help with the arm development. She now does 50 rows on the rowing machine without headache issues and she sees her trainer twice a week. She use to have to rest due to headaches she now is ready to do other activities

.

Swimming: Chloe is now able to do the elementary backstroke and can do up to 10 lengths of the pool independently without flotation devices. She is now working on coordinating her arms and legs which takes verbal prompts. As she better coordinate this swimming style we will begin to explore her arms in the back crawl or backstroke. This is one day a week.

Saint Vincent DePaul thrift store: Chloe has been working there since July. We have increased it to an hour and a half in December then hopefully 2 hour in January. She enjoys the work experience and gets great practice using her arms in functional activities. This is also one day a week.

Two days a week we go to a Mall to pick up items we need. Chloe looks forward to the planning then the picking up of the items in the stores we got to.

The book and pictures are sent in to my Submission Coordinator, I do not know how long the editing and  publishing takes! Here is another paragraph from the last chapter!

Chloe growth was a big issue till she stopped growing. She is now 5 feet 9 inches tall and a T-shape body that means the widest part of her body is her shoulders. Doctor’s have suggested if her body was smaller and her body type was different her issues possible would be lessen. Allergies and asthma we had to stabilize which took allergy shots and special diet to avoid food she actually had more of a behavioral acting out on.

Thanks to all that help with their suggestions on the final chapter. Here is a paragraph from the final chapter!

Musical therapy was one of the smartest moves to get the professional attention but was not covered by our insurance, thankfully the least costly of all the therapies. Chloe was able to demonstrate she could use her arms  from her elbows to her hands to play the recorder  the piano, typing and even printing  but could not hold her arms straight out from her body or over her head. I heard from several doctors that the shoulders are the most magnificent part of the body but the least understood. We all agreed to try and figure out why Chloe arms could do fine motor tasks but not gross motor. The referral to the neurologist questioning why Chloe arms were responding this way and why her left shoulder was higher then her right were the concerns we stated to the doctor.

Neuropsychologist

 Today Chloe had an appointment with a Neuropsychologist to be evaluated to see if we are on the right track. This is an individual with a doctorate degree, license in clinical psychology and specialized training or board  certification in neuropsychology who practices or adheres to the principles of neuropsychology; a specialty within the field of psychology focusing primarily on neurobehavioral functioning.

He was quite helpful asked a lot of questions of me and tested Chloe sharing her strengths and weaknesses with us. He is sending us an extensive pack of information and  recommendations. He liked the work she is doing at the thrift store and feels some type of work that keeps her in motion is an excellent idea. His tests were academic and also evaluated reasoning skills. The reasoning skill test I watch was very interesting and very different from the other one.

We will see the neurologist in November 2012 to discuss these recommendation!

What we can conclude!

Chloe was given serotonin medication to alleviate anxiety possible due to pain. The neurologist said this is an attempt to block pain receptors or at least help with her anxiety. The serotonin medication decreased the anxiety but also increase her ability to use her arms and upper trunk. From the ability to almost do nothing when she started, to her greatly improved flexibility in these past 10 months has been breath taking to watch. We can conclude, we must be dealing with some unknown pain issue that is helped by this medication

Maybe Final pages of the book!

Since the start of our journey to help Chloe recover from this bulging disc that caused this muscle disorder. The Doctors said a right mother for a right kid. I have been a medical social worker that helped clients in a group home work through a number of health issues to stabilize these issues and improve the quality of their life for 20 plus years.

I was surprised how my daughter recovery took a whole lot of opinions and surprise treatments that helped to figure out what would be the right direction to proceed.

In January the medication with serotonin was introduced and the bulging disc was in the mild state but we were still not getting a lot of arm and shoulder movement. Since the introduction of this medication the arms, trunk and shoulders seemed to wake up. Chloe now has much better control and seems to be continuing to improve. We are very lucky to work with physical therapist and occupational therapist during this time who kept one step ahead of Chloe’s progress.

The goal is to tone up all the many muscles in Chloe’s chest, arms and shoulders then see possible get off the medication one day. This will be an adventure that still has many unanswered questions. Hopefully next year, possibly a part time job while she works with a personal trainer to continue to maintain and develop these newly awaken muscles.

This is a recovery of many muscles I am grateful for the exercise routines that the professional lay out for us. I am grateful that my college degree and my work experience help me handle some rough times too.

We will continue to push ahead on an unknown path and hope for continued success.

Journey continues>>>

Sorry it took so long to post! I was sick for several weeks, a relative in hospital and had 2 independent construction project over here during that time. I also  focus in a project and tend to lose myself in what I do. I have had people concerned that I might be getting to withdrawn but I shared with them my focusing on projects is intense, they finally got it. So I am not sure which of the issues took up the most time!

 

In the physical therapy sessions we now have exercises to completely stretch out her back with 3 or more exercises. Now we are working on developing exercises for Chloe to do,  lying on her sides. The physical therapist found that the sides of her trunk need to be strengthen and now are very weak . This is what our next goal will be to develop these very weak muscles.  So Chloe is more tired and sore then ever before. So I would like to share with you our behavior approach from the book                                                  

 

Since Chloe receives a medication that blocks her pain receptors.

 We now, have to work on her excessive Fight-or-Flight response.
 It is the body’s response to perceived threat or danger which
 causes certain hormones like adrenalin and cortisol to be released
 in her body. The release causes increased heart rate, slowing of
digestion and shunting flow to major muscle groups.
The changing various autonomic nervous
functions giving the body s burst of energy and strength.

We work with the white board as to what the problem is and
 how to deal with it like a person of her age would. First she
must go take a break no crying, no yelling and she must be ready
 to discuss the subject like a person of her age would.
 If she is unable to discuss it I may resort to having her type
 how she should act in a given situation.
I will demonstrate by creating the sentences she needs to type.
 Areas I will cover in these sentences: what is the problem,
why she got in trouble for her response and what should she
 do differently to prevent her from typing? At the start she did
 a lot of typing but now we can talk thing through and maybe use
the white board for highlights of things to remember.

Physical Therapy Sessions

Now back to the blog update, after having to clear up several obstacles in our day to day lives. Now, hopefully back to tying up loose ends and sending in the book to publisher soon.

Chloe has had two session of physical therapy. This is what we learn that if she has a headache on one side of her head like she has on her left side of her head then the issue is most likely on the left side of her upper back.

Also we found out when Chloe is having unexplained pain and stretching appears to alleviate it. What it might be is hyper extended first rib due to her left upper back issues.

Jeff, the physical therapist check her back out and found the left upper back muscles much tighter than the right upper back.

He is working on an exercise routine that would help alleviate this problem. He gave me his phone to take pictures of Chloe doing the exercise while he is supervising it. Then he had me send the videos to my email with his phone. Amazing technology that I am using to report on my daughter’s recovery and would not have gotten the chance to use, if I wasn’t writing this recovery story.

He also recommended craniosacral therapy and suggested I research it too.

Home school had it's advantages

                                             Vacations

Being home schooled with health issues allowed us to work with Chloe’s doctors to take some great vacations. We took extra medication and had emergency plans worked out a head of time.

1998 when Chloe was 6 year old, we went to France with a church choir that my husband and oldest daughter belonged to. We travelled all over France and stayed they sang at different churches and also site see in that amazing country. Her emergency plan worked out well and was put on extra allergy medication so she could totally enjoy her vacation. We travelled all over France for about 2 weeks.

2000 when Chloe was 8 years old, we travelled to California. We went to Disneyland and Sea World and other attraction. Concerned about allergy issues we found the trip in was well managed and so was the vacation. We did run into delays on takeoff at the airport which caused a brief episode but for the most part the planning with the doctors really helped.

2001, Chloe was age 9 years old. We travelled to Mall of America in Minnesota. It was a much easier trip by car and we went to Minneapolis and St. Paul site seeing. We did not have to deal with airplane and airport issues so it was a much easier trip to plan for.

2004, A cottage was built on my husband family land. Since then, we go up several times a year and travel on one day sightseeing trips from the cottage.

2012, in January we travelled to Palm Bay Florida to see Chloe’s godmother, a good friend of ours who recently moved there. We went by car and had fun travelling there and back through all the different states we