known mutation, the general consensus was because funding is scare he wouldn't be accepted into a study. I really felt though we should try before
he left pediatric rheumatology and entered college.
Thirteen months later we got the call! He and I will travel to the NIH on May 7th! I am fully aware that we still may get no answer per-see to what
he has however I believe it is a step in the right direction.
For now there are many details to work out. The week we go, Rachel
is coming home from school... so we need to arrange a way to get her and her things home for the summer when the person who usually does that and has the van (me) will not be around to do it. Also since the winter has been so bad and Mike has already used most of his vacation days he can not come with us.... so we also need to find someone to be with
the younger two till he gets home from work Wednesday, Thursday and possibly Friday.
I have to admit I feel so unprepared. For years we kept charts of symptoms, fevers, and such. When it became clear that no diagnosis was
on the horizon... we just started soldiering through it. Also as each of
the other kids started showing symptoms it began to be just a chore to
keep my head above water some days.
It's now almost 6 am and I've been awake since about 4:30 ugh! In a
little while I have to get up and go grocery shopping... the cupboards are
a bit sparse. Lucas has an OT evaluation this morning so I want to go before then.
I am praying for guidance about school next year and work. I have an opportunity to work more hours but I'm concerned about school with
Lucas. He's made great strides this year and jumped 4 grade levels in
reading. I don't want him going backwards because I'm not there as much.
Praying for and about a solution.
This week did not start out the best. On Sunday as we got ready for
church, Hannah noticed the downstairs ceiling was dripping. The ice maker
hose had a leak in it. So the floor boards in the kitchen upstairs and the
ceiling directly under the fridge downstairs were water logged. Mike and
Cody spent the morning then fixing the hose and taking down the ceiling
downstairs. When Mike and Cody went to the hardware store for a new
hose the spring on his passenger side door came off. :) Mama said there be days like this.
In a bible study I've been studying about Ruth. Ruth was called a
women of excellence not because her life was perfect... her husband
died, she moved o a foreign land with her mother in law etc. But she
trusted God and he provided for her. I want to be a women of excellence
too.
