Summertime! God's promise of sun and warmth.

Its summertime around here without a doubt.  We have gone on vacation, went to the beach, ate ice cream, played outside A LOT, stayed in our pjs all day, swim lessons, played with bubbles and chalk. . . well, you get the idea.  We have kept up with our therapy with a few cut backs for summer.  I have been trying to balance the busy with the calm the best I could for the boys.  Thomas was able to enjoy the swim lessons a bit, they have fabulous lifeguards that are extremely helpful and fell in love with Thomas.

We have gotten into a great habit of working on some of our OT lessons while I cook dinner each night and he loves it and is getting SO good at it.  My goal is to always be working with Thomas to keep up his muscle usage and thus strength in fun ways.  Its best so he doesn't think he is working.

School starts up in three weeks and our next round of appointments will start kicking in.  We will have our follow up with the Ophthalmologists, Pediatric Orthopedic, ENT, Spine Care Clinic and our annual MRI by December.  I will keep you all updated as these things start coming down the pipeline.

As for me, the mommy, its been still been a roller coaster to be honest.  I like to think that we are normal and that its really no big deal when we are living our daily lives.  But the reality reminders are always popping up again and again.  I biohazardous package coming in the mail, CHOA statements, insurance EOBs, but the most heartwrenching is hearing the stories of other KFS sufferers. 

I have come to know and love them so dearly. It benefits me to know them and to stand with them to promote awareness and research for KFS.  I joined to learn more, to know what we were up against, to try and determine some type of prognosis for Thomas.  They are beautiful people just like you and me, children of God made specially by the makers hand.  There are good things I get to learn about and then their are the disappointing, disheartening things that you read such as this post:

After being given incorrect info about MRI yesterday and going to get report myself ...I am exasperated that Dr has no suggestions on who to see, lack of connection to the pain level, no ideas for new course of treatment and here I am in the same painful place with spinal canal narrowing, which is new. Sorry...just needed to get it out. And before you say, get a new Dr, I should list all the Drs I've seen. Running out of them.

The frustration is overwhelming, the pain is daily and barely manageable.  The medications are numerous.  I could go on and on.  I pray that her life is touched with healing and answers.  I pray that she knows that through her pain God loves her unconditionally and will help her through.  I pray that this will not ultimately be Thomas future.

Jeremiah 29:11
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.