More tests

I needed to write today to try to express what builds up inside of me while watching a child struggle health wise.   I am confident that every parent out there will say parenting can be difficult at times and even heartbreaking.  I know that is 100% true of parents with children who suffer from chronic illnesses.  Yesterday I told Joe how I wished we could just take a month off.  A month with no pills to swallow or liquids to gag down.  No "gross colored" smoothies with spinach and kelp.  A month without all the appointments to Acupuncture, Chiropractic, Physical Therapy, blood tests etc... A month without having to spend hours a day on the Bio Mat to manage pain or using the quad zapper to destroy bad bacteria in his body.  A month where food didn't always have to be organic and sugar free.   A month just to let him be a kid again.  

Waiting our turn at the lab

This morning we are finishing up our morning routines and then we will head up to the local lab for another blood draw.  This time they are testing in relation to his leg pain.  One of the tests the CK we had done last year and it was normal.  The CK is an enzyme test for a protein that your muscles need to function properly.  The other test is called Aldolase and is supposed to be more in depth.   Aldolase is a protein found in high amounts in muscle tissues  It helps break down sugars into energy.  

We are still holding off on the Xray of his leg because even the physical therapist thinks it's muscular pain not skeletal.  It may be that he needs a scan of his calf instead.

He was a trooper for the blood draw but it was not without tears shed prior to going about going.  He adamantly sobbed that he "hates blood draws!".  He climbed up in the seat like a pro and watched the whole process yet again.  When he was done he declined a bandaid but after a few steps towards the door his arm literally squirted blood out and down onto the floor.  He said "Wow that's never happened before!",  and accepted a band-aid with gauze (which he left on for hours just to be sure it was ready).  On the way back he said "that was a different lady then I usually have".  I responded with "you're right, do you remember the name of who you normally have?".  He laughed and said " No way mom, I have to many doctors to keep track of!"  He always can make me smile!  

He watches very closely!

The tears are what get me... his tears of frustration and his tears from pain.  I would do anything to take those tears away.  This past weekend we enjoyed camping for Mackenzie and Chris' lacrosse tournament.  On Saturday night we wanted to get a "treat" at the local Meijer.  Mackenzie and Chris wanted icecream which we agreed they could have.  Unfortunately that meant that Thomas would have to watch them enjoy icecream so we searched for a suitable treat for him.  He was so frustrated at one point that he let me pick him up in public while he cried on my shoulder.  We finally settled on organic grapes, dates rolled in crushed almonds and a bag of organic dried berries not quite the same as icecream but he did finally say it all tasted good.    

I guess today I just feel like having a pity party or something.  It's tiring preparing all the food whenever we go someplace.  After Michigan Adventure in early June we stopped at Logan's; a massively rare treat to go out to eat and we let Thomas have french fries and baked apples.  The rest of his dinner was organic food from home.  He suffered a set back after that and his acupuncturist thinks it was a combination of the sugar and other stuff in the food on top of dehydration and activity that caused it.  It's frustrating that something so simple as eating french fries in a restaurant can harm his body so!

But Joe is good at rallying and making me feel better by seeing the positive.  He reminded me that even after this latest camping trip we didn't have a major set back.  Last year it would have taken a month or two to get back on his feet.  We were super careful and didn't cheat on his diet and took all his supplements with us plus made sure he had plenty of water.  He also had a "rest" time at the site during which I fell asleep and he laid there making faces at me.  

So now we wait to see if this blood test shows any indication regarding his ongoing leg pain.  I am not quite sure how to pray- do I pray that it shows something so we know why or pray that it doesn't show that he has yet another autoimmune disease...  I think I will default to the best prayer of all; praying for God's will in our lives and over Thomas' health.  

Physical Therapy

July 8, 2016

We went to see our family doctor a few weeks ago because Thomas is still having leg pain and it seemed to becoming more frequent.  The doctor wrote a referral for physical therapy plus one to another specialist who deals with joint and muscle issues as well as ordering more blood tests.  We opted to start with just the physical therapy as the stress of added tests and more doctors poking and prodding is quite hard on him.  He's gone 3 times now to physical therapy which included 2 treatments of Astym.  Thomas likes going for the exercises and use of the machines but he HATES Astym.  It hurts especially when it's done on the back of his calf muscle while he lies on his stomach.  He literally bites the pillow and buries his head in it.  Astym involves the use of plastic tools that are pressed into the muscle to release tension and scar tissue.  It is essentially a soft tissue therapy that helps rebuild and heal while eliminating pain and restoring movement.  Joe had it done following his knee surgery and he attests that it is not a fun treatment.  Results are said to happen in just 4-6 weeks though.  Tom's therapist is great and she comes up with lots of fun activities for him. He keeps her on his toes though and isn't always truthful about the number of reps he's completed.  
 

At home he has quite a list of exercises.to do to strengthen his outer thigh muscles which are weak.  He also is working on 2 muscle groups in his lower legs the Soleus and Gastrocs.

Headaches overall have been rarer.  He did have a really bad one on Monday the 4th and he hurt all over.  The acupuncturist thinks it may have been a combination of being dehydrated and the chemicals given off from the fireworks. He ran in the mile fun run that morning and that may have attributed to everything.   There's also some correlation insect bites and his symptoms.  It almost seems to make the Lyme more active.  I am trying to always remember to set the timer for his distilled water.  The goal is about 6 ounces every hour up til about 5 pm then just back off so no wet beds :-)  We are once again going to try going 3 weeks between treatments mainly because Thomas so badly wants a break.  We did add back in the essential oils Sacred Frankincense and Thieves- 2 drops each mixed together and applied to the bottoms of his feet to try to raise his body's energy.  He's been struggling with his energy levels since the end of May again.

Today we head out for camping and Chris and Mackenzie's Lacrosse tourney.  I have been busy preparing all the food and making sure to pack plenty of organic fruits and veggies for Thomas.  Praying that the weekend goes well and that he doesn't have setbacks without the use of the bio mat, grounding blanket and harmonic quad zapper.  He is looking forward to swimming in the campground pool!