Sews2Reap

It has been over two months since we went from healthy eaters to that fanatical family.  My son had a bad reaction to the one medication that had really helped with his pain. We had to stop it cold and the pain came rushing in.  As usually happens, desperation helped us make a decision we had been putting off. For us it was the gluten/grain free diet. So in one weekend we dropped all sugar, and most grains including corn.  The one we kept was rice. I know. You're thinking why? Well, it is one of the only foods my son had complete tolerance for.  I told him I would do it with him. It was only fair. I used to be such a slave to bread. We have been cutting it back for years so it was pretty painless to just cut the cord. Sort of. Not everyone in our house was willing to keep the diet with us. So meal times could be more stressful. It seemed to reinforce the few foods he couldn't have instead of the all the great choices he could have....

My son is going to his first sleep over in over a year.  Since his pain has grown and become unpredictable and his nights have been some of his worst times, sleepovers have been impossible.  I am excited, and so is he, for this simple childhood event to be back in his life! This is a trial run.  He will only be a few miles away and with people we trust completely.  It's not so simple though.  Not only do we pack his clothes but also his medications.  Each dose in its own baggie with instructions.   This is just to get him through the night.  So here is the biggest challenge for me.  It isn't letting him go - I so want him to have every "normal" good childhood experience he can.  It is trying not to overwhelm the family in whose care he will be. Not sending pages of detailed instructions with a timeline and explanations for each medication.  I know they will call if there is any question about anything.  I keep telling m...

This is how we do it every morning. I will add our night-time protocol later. Nights are just difficult.  Since doing the 'happy oils' my son copes better with the pain.  He says he even when he still hurts it doesn't bother him as much. He can play, do school, and be a goof.  I'm not a doctor. DO NOT stop medications with out your doctors help. Always check for drug interactions. This helped our family, maybe it will help yours. 

So much has happened since I posted over 2 years ago. My youngest child, now 11, has been actively battling with a rare health condition.  He was diagnosed when 5, but we knew something was up by 2 1/2.  It just took over 2 years to find a doctor who knew what his condition was.   If you meet us, most people would never know anything was going on.  I'm thankful for that and have been pretty quiet about his condition because I don't want him treated differently or stigmatized in some way. However, our last doctors appointment gave me much to think about.  One of the specialists who sees our son recommended I "put myself out there." So what is his condition? Parry Romberg Syndrome.  He won't die from it, but he does have to learn to live with it. Every person with PRS has a different  story.  Some have seizures, others only facial atrophy.  Most will have headaches of some degree and may develop anxiety, or depression.  A ...