Sunday, August 4, 2013

When It Rains, It Pours!!! NAET, Road Trip, Lingraphica Speech Device, Audiology, PT, OT, Speech...

I have had a lot of inquiries and people checking up on why I haven't been blogging.  I promise you it is not a lack of topics or things to report but instead...lack of time. Sometimes life just gets so hectic and everything seems to happen at once and you feel as if you are being pulled into 20 different directions.  I have been riding a rollercoaster of grief as I continue to come to terms with the loss of my Mom and my best friend. I have had to refocus on both Sam and my health needs, physically and mentally which meant more doctor appointments than normal and a renewed commitment to taking some much needed breaks, taking some long walks and praying for guidance, resilience and patience.

During the 4 months of Sam's external fixator and the loss of my Mom I noticed that I wasn't feeling very good.  I know stress can do terrible things to your body and I was pretty sure I was in trouble.  I was beyond tired. I went to sleep tired and I woke up tired and yet I had difficulty falling asleep or staying asleep.  I noticed my hair was thinning first in the front and then in all areas. I also had an inability to stay focused on something for any length of time.  I would start something and never finish or I would think about all the things I needed to do but didn't ever seem to get moving on them. I felt bloated all the time (some days I would have swore I looked like I was 6 months into a pregnancy) and noticed that I had gained more weight in my midsection.  I wanted to eat more at night than anytime during the day. I often woke up with my heart racing or feeling jittery. I was getting sick and catching things more and more easily, often times easier than Sam (who has a weakened immune system). I would often feel overwhelmed by simple day to day tasks and I had difficulty thinking things through. My therapy of writing which normally comes to me without much effort was tedious and I didn't seem to be able to write from my heart as effortlessly as I had in the past.

I knew if I went to a traditional doctor and told them what had been happening in my life, it was likely I would hear that I was suffering from depression, anxiety, maybe a thyroid issue or something like chronic fatigue syndrome.  I was surprised to see my blood pressure much lower than what I would normally see during stressful times.  A good friend of mine had told me about a NAET doctor that also did muscle testing along with sensitivity testing.  I chose to go see this doctor while Sam still had the external fixator and we were struggling with keeping the pins sites stable.  Sam's body just didn't seem to like the external fixator and was throwing everything at it it could including black flesh, excessive scar tissue, over healing, collapse, granulation tissue, granulomas and just plain looking bad. I made progress with Medihoney but could never quite get them looking stable.  Both Sam and my medical issues changed when we met Dr. Hoan-Vu Nguyen, whom we refer to as Dr. Vu.

As I explained in a previous post:  NAET is considered a journey to better health. I have long felt that most medical professionals are taught to look for and treat symptoms rather than to look further to find their causes. You can click on the NAET link at the beginning of this paragraph to learn more.  The process uses a computer program and analyzes through the central nervous system.   Sam was found to have the following sensitivities:  RNA, Vitamin D, food coloring, soy, selenium and magnesium. Through muscle testing the doctor figured out his pituitary gland was not functioning correctly which would make sense since Sam was recently diagnosed as hypothyroid and the pituitary gland stimulates the hormones for the thyroid.  Hmmm...we knew Sam had a soy allergy and Vitamin D makes sense since he has always had a deficiency in this area and now we learned his body didn't know how to use Vitamin D properly.  Vitamin D and magnesium are both essential for good bone health.  It all kinda makes sense doesn't it.  Sam's biggest sensitivity was RNA, Ribonucleic acid (RNA) is a ubiquitous family of large biological molecules that perform multiple vital roles in the codingdecodingregulation, and expression of genes. Together with DNA, RNA comprises the nucleic acids, which, along with proteins, constitute the three major macromolecules essential for all known forms of life.  Seems like a pretty important process that a person should not have a sensitivity or issue with.

I didn't have any major sensitivities like Sam but I showed a brain/body imbalance, hormone/estrogen issue, minor sensitivity to bacteria, salt, acid and chocolate and through muscle testing my adrenal system was no longer working properly.  When I did further research all of my symptoms would point to adrenal fatigue or failure.  Instead of going on an anti-depressant or anxiety medication or just treating my thyroid, Dr. Vu got to the core of my problem.  Along with correcting my brain/body imbalance and hormone issue I began to take Standard Process supplements for my adrenal system.  I noticed a difference shortly after taking them, like waking up and actually feeling rested.  As I have continued to treat my adrenal gland I have noticed that I have more energy, can stay on task and my normally busy schedule does not seem so overwhelming. As I began to take the supplements I noticed I felt nauseous at times and brought that up to Dr. Vu, after further testing he suggested a digestive helper.  To treat my adrenal system I began taking Standard Process Adrenal Complex, Immuplex, Drenatrophin PMG and Zypan for digestive help. You can click on each of them to learn more about the supplement and what it helps to support.

I feel better and find myself making better health and dietary choices. I am exercising again, drinking more water, cleaning out my house and closets without feeling fatigued, blogging and have stayed healthy since starting these supplements.  Sam is off his thyroid medication and we will be doing blood tests to see what his thyroid and Vitamin D levels now look like.  He is moving through his rehab process and no longer takes any pain medication for his hip, this is remarkable after having been on narcotic pain medications for the last 6 months.

Sam is walking with his walker throughout the house and only uses the wheelchair for distances outside our home.  Here is another recent accomplishment:

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This summer we took another road trip, this one to regroup, reconnect and relax after a very hectic year of medical issues and the loss of my Mom.  I took my Dad, sister, Danielle, Isabella (Danielle's friend) and Sam to North Carolina.  We had a great time and enjoyed our time together.  The trip was in June while Sam was only 4 weeks out from his third hip surgery so he was pretty much wheel chair bound at that time but the pool was wonderful for his rehab and the ocean always helps lift his spirits.  Here is the beautiful home we rented for the week in Duck, North Carolina.


The girls and Sam loved the pool.


Even Aunt Wendy and my Dad found the trip relaxing!


Wendy and I took many walks by the ocean.


 The ocean is always calming to me.


 Usually my niece Brooke is on our road trips and always takes a feet picture.  This one is for her.


 Sam found the perfect place to relax! 


Being in a wheelchair didn't keep him from enjoying his vacation!


On one of the few days that it rained Grandpa played cards while Sam worked on a puzzle.


The girls played a game!


The ocean walkway was only 5 houses away from us.


Sam and I would walk down and check everything out in the early evening.


 Sam even got his toes in the sand!! 


I knew sitting at the ocean would bring back memories for my Dad of doing this very same thing with my Mom when they vacationed in Florida.  We all shed a few tears but I had told my sister that if we saw a dolphin it meant Mom was there with us.


And sure enough a dolphin surfaced at least 10 times but only when we took my Dad to the ocean!


 Sam had fun taking pictures with my camera!
 

He even got Grandpa to smile through his tears.


 AND SAM LOVED THE POOL! 


He spent a lot of time under water!


He also like the hot tub! Good to soothe the hip after all that swimming and diving.


 Sam and I went on walks in the area and always found interesting spots to take a picture!


And some of the most unusual flowers!


 Sam was so happy to be out and about!




 Sam loved the big surf board! 


Like me, Sam finds the ocean comforting!


I wondered if he was imagining himself out there surfing!


Whatever he was thinking...it made him happy!


The girls enjoyed the pool, the beach and riding bikes into town!


 At night, Wendy and I would head to the beach to search for crabs. So much fun to watch them scurry around.  Sometimes I think they can move sideways faster than going frontwards or backwards. 


Some of them were pretty big and it was fun to scare Wendy by telling her one was coming at her.


There were crabs of all sizes! 


 Some great pictures of the girls loving the ocean!! 





One of my favorites!!


Bella and Danielle have been friends since elementary school!


 We laughed a lot as Danielle tried to get Bella's hair out of her face for the picture!


Having fun!!


Then they got creative and wanted to do the heart photo!


 It was a great day!! 


 

 Fun afternoon with my girls!! 

Another favorite picture taken in front of the house we rented! 


Grandpa and the girls!!



 Returned later to the ocean to try to surf those big waves! 



 They had a lot of fun and spent a lot of time fighting not surfing the waves. 


 Even found a message in a bottle.  Wendy and I were so hoping it was from Mom but it was written in red crayon by a child and said "We sin but God forgives us". 


 Enjoyed seeing the squadron of pelicans!


Wendy and I collected a lot of shells along with our message!


Loved our time in North Carolina!


Due to Sam's limited mobility and the houses being on stilts in North Carolina we had to figure out a way to get Sam up and down the steps.  Sam weighs approximately 130 lbs. so this was no easy task but if there is a will there is a way and Bella and I got quite the workout while on vacation.


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When we returned from our vacation I felt relaxed and re-energized and one evening as I was doing some research on the internet I came across a free trial of a speech device for people who have had a stroke or brain injury.  The website is Aphasia.com.  I have often looked at speech devices but didn't want a device to talk for Sam.  I'm not sure how I came across this device....guessing divine guidance...but the Lingraphica device not only speaks for the person but it has a lot of speech exercises and practice sessions which is what really interested me. As I looked at the device I realized I had downloaded some apps on Sam's Ipad that he loved from this company.  The pieces of the puzzle were beginning to come together.  Sam is 12 years old but the combination of Down syndrome, brain injury, apraxia, aphasia, hearing and processing issues have kept Sam delayed in speech production.  Sam has certain phrases that are very clear and can be understood by most people.  But after working for years with Sam I know his processing and word retrieval issues cause him the most difficulty.  I really think Sam knows what he wants to say and understands much more than what he can demonstrate through speech but retrieving the right words and getting them through a tangled oral motor system is really, really difficult.  Sam's clear phrases of "I want water please Mommy dear" have come from years and years of practice.  Due to Sam's hearing issues he has always paid more attention to a person's mouth, like lip reading, than overall facial expressions and because he struggles with oral motor issues seeing how proper sounds are made helps him to better form his words.  The Lingraphica app on the Ipad that Sam was drawn to showed a mouth up close at it said different words and phrases. When you find things that draw Sam in you run with it.  Another issue due to Sam's hearing has always been active listening.  It is work for Sam to hear and process so he often chooses to bypass this and just talk at you not with you. He shuts down if you ask him questions but it doesn't mean he doesn't understand or can answer correctly.  I have found that Sam can't verbally produce the right answer but given a picture or word choice he can answer correctly about 95% of the time.  Here is some information on the apps I use with Sam.

TalkPathSM Suite of Therapy Apps

The Lingraphica TalkPath Suite of Speech Therapy Apps for your iPad gives adults with aphasia or apraxia therapy activities designed to help rebuild speech lost due to stroke or other brain injury.
Developed by a team of speech-language pathologists and Lingraphica, the TalkPath Suite of Speech Therapy Apps moves you through specific skills helpful in the quest to redevelop speech. With easy-to-use unique features common to all of the apps, the TalkPath apps can be used with the guidance of your SLP or on your own. 
TalkPath apps, designed specifically for adults, use proprietary content and media created by Lingraphica for use in our speech-generating devices, the AllTalkTM and the Touch TalkTM.  The icons used in the apps “project” -- which is a methodology we developed over years of research and experience working with adults with aphasia and apraxia -- to stimulate your senses and prepare you to complete a task. In addition, verbs in the app are animated to more clearly demonstrate the word and add proper context. All voices in the TalkPath apps are recorded, adding to the friendliness and usability of the apps.
The TalkPath Suite of Speech Therapy Apps were developed with the guidance and input of Lingraphica’s clinical review board and our Chief Scientist, Richard Steele, Ph.D.
The TalkPath apps are available for purchase and download at your convenience from the App Store.
  1. Lingraphica TalkPath Reading - Available on the App Store

    TalkPath Reading
    With three types of exercises, the TalkPath Reading app is designed to help rebuild and improve reading skills for adults with aphasia or apraxia. This app provides you with basic word, letter, and phrase identification, and word and picture matching exercises, all designed to be of help with language challenges.
  2. Lingraphica TalkPath Writing - Available on the App Store

    TalkPath Writing
    Designed to improve basic spelling and letter-to-sound recognition, the TalkPath Writing app works on fundamental skills helpful for communication as it moves you through three levels of activities in two sets of exercises.
  3. Lingraphica TalkPath Speaking -Available on the App Store

    TalkPath Speaking
    The six types of exercises in the TalkPath Speaking app are designed to help rebuild your memory, word retrieval, and spontaneous speech through naming exercises, repetition activities, and flash card naming activities.
  4. Lingraphica TalkPath Listening Available on the App Store

    TalkPath Listening
    Through activities such as common pair matching, opposites identification, object identification, yes and no questions, and Wh- questions, the TalkPath Listening app helps with word discrimination, word association, short-term memory, and other skills useful to help rebuild speech.
The device itself can be individualized to the person who will be using it which I think would draw Sam in further.  Sam's speech therapist has been trained by Lingraphica to work with Sam on the device and we will start this next week.  Now the real test will be Sam and does it draw him in or does he decide not to use it.  I will let you know what happens.

Speaking of Sam's hearing and listening...I recently took him to his audiologist to have his hearing tested.  Since Sam's last surgery he has been refusing to wear his BAHA hearing aid which is attached to his baseball cap.  As usual Sam does not tell me why he won't wear it his behavior just indicates that he has his reasons...now as Mom I need to figure out is it behavior, improved hearing or a problem with the BAHA that is causing Sam to not want to wear it.  What I wasn't prepared for was the idea that Sam's hearing had improved to the very lowest normal range.  The BAHA would be too loud but yet Sam would still require some type of amplification to pick up all speech sounds and weed out background noise. We had a Phonak FM System to use with Sam's BAHA but he didn't like when I used it.  However if it could be used with a desktop speaker it might be more viable for him.  So I began to work with Brent Bowman from Audiologyshop.com to see if we could use an Oticon desktop speaker with a Phonak microphone.  This is still a work in process.  Brent has been extremely helpful in letting me know my options and shipping demo devices to try and see how Sam will work with them. I will be attempting to use a complete Oticon system with Sam this week to see how he reacts to it.  If you click on the highlighted Oticon system above you can see what it looks like and how it works.  When we tried to combine the Phonak and Oticon systems there was too much feedback and my sensory boy will not tolerate any type of mechanical feedback.  The system would be helpful as I tend to work with Sam one on one and at a distance while we work in the house and outside.  I think Sam would pay better attention and pick up on more with this type of amplification and we could use it on field trips too.  But as usual it will be up to Sam to like it or choose to shut down with it which is why I am thankful that Brent has been so helpful in letting me try it before I buy it.

After Sam's last x-ray Dr. Standard asked us to throw everything we have at hip extension which is by far Sam's biggest remaining issue.  So we work on hip extension in the pool twice a week and will start PT once a week.  Add in Sam's speech therapy and 4 to 5 days of homeschooling per week and you get the jest of my schedule along with working 2 1/2 days a week at Duluth Trading and a few hours a month at another job.  Obviously my energy level has picked up and I am so looking forward to field trips with Sam once everyone else returns to school, that's my absolute favorite part of homeschooling along with not driving in bad weather or having to send Sam out in bad weather.

Well, that is all I have time for right now.  I hope everyone is enjoying their summer, enjoying their children and figuring out how to get to that next level in whatever you are working on. 

3 comments:

  1. Sam keeps reaching high! My son is 5 years old and have T21 and ASD. You and Sam are giving me the inspiration I need. Thanks so much for your post.

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  2. You are welcome Rosa and please feel free to post questions you may have. It helps me focus my blog posts. Enjoy your little guy and keep reaching, they are teaching us patience, perseverance and appreciating the little things in life. God bless you and your family.

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  3. I'm so glad you had this vacation, Sue.
    Jeanne

    ReplyDelete