The weekend June 6th and 7th

The heart monitoring was easy peasy!  He had a little trouble getting to sleep because he was afraid to curl up and snuggle down with the monitor on but a little extra snuggling from Mom and he drifted into dreamland Friday night.  Saturday was a good day.  He wasn't dizzy and his headache was very mild.  He enjoyed driving our RC car down the driveway and coloring with chalk.  He also had his silly moments that define his personality.  For instance, he took the box from the frozen Lasagna and made it into a shield and used a ruler with dirty socks over it as his sword to attack anyone in the kitchen. 

At one point Cassie looked at me and said "Do we live in dreamland?  Is this possible that he can go back to being his usual crazy self after spending 8 days not being able to walk or barely play?  I have pictures, Mom of him on the floor, scooting on his back!  See?"  And then she pulled them up on her iPod as if to prove she wasn't losing her mind over what we've been through.  I feel the same way, it's like we have two sons and we are never sure which one will be with us and for how long.  Saturdays biggest complaints were leg pain for which we massaged some deep relief oil mixed with coconut onto his calves.  We've been slowly using the rose oil on his "spots" and I put the hair therapy blend on his bald spots yesterday.  It looks like there is a tiny bit of new hair growth on the smaller bald patches near the top of his head and maybe just maybe the spots on his chest and back are fading.

Today he's been quieter and mellow.  He's really tired.  Yawns a lot and has dark circles under his eyes all the time.  We know he's struggling just not sure with what.  Welcome to the world of unknowns with autoimmune disease- right?!  I found a site last night http://www.momtastic.com/health/176501-signs-of-autoimmune-disease-in-your-child/ and it definitely described him.  They listed some common non-specific autoimmune disease symptoms :

• tiredness/fatigue
• dizziness
• rashes
• weight loss
• slight fever
• diffuse joint pain
• dry eyes/mouth 

 It also goes on to say that frequently just a feeling of not feeling right is described. We are really hoping to get some answers to point us towards what is really going on.  The Neurologist appointment finally feels like it's within site so we can discuss any possible head injury or other neurological issues that may be present.   We will be meeting with our family doctor sometime this week to discuss what the next steps are for Thomas. 

We all made it to church together for the first time in over a month today.  In the message today, our Pastor said "God sometimes removes trouble.  God always provides strength."  We have a better understanding of why people often name their long term medical journeys as marathons.  This definitely requires the strength and endurance a marathon would entail and we are blessed to be able to able to draw our strength from the One True God.

 

In the low moments; I can definitely be heard echoing the psalmist in Psalm 22:1 "My God, my God, why have you forsaken me?  Why are you so far from saving me, so far from the words of my groaning? "  And yet I read somewhere that God doesn't move away from us rather it is us that have moved away from Him.  Please keep praying for us!