My little BOSS Man!



Avery has been pretty spacey on and off !
We are praying this new med helps him.....have better seizure control!



Thinking ahead....but not to much

There are 24 hours in the day and 11-12 of those hours ...will be occupied with making sure I have drawn up and given Avery his medications.....
Tomorrow morning I need to seriously talk to the NP about combining some meds.....but not to the point that it bothers his GI track to much more than it will already be....if not, sleep will remain the same as it has been....almost not existing.....

This medication plan is not including the neb treatments and G/J tube pedilyite flushes every 4 hours...

Yesterday...the best sounds I heard was..Avery's giggle!!!!!! Music to my ears!
Of course I was tickling him....

During the dayyesterday it was......SOOOOOOOOOO busy ..people in and out of our room in and out...it was like a revolving door....

Avery had lots of coughing Tuesday & Weds ...His seizures are pretty unchanged...in fact maybe a little increased in the area of stuck eyes....today he had a new twitching movement with his left foot...hopefully it won't continue.... Tonight was night(Weds night) 3 of Avery's new medication...we hope to see some positive changes in the next days and weeks to come...I'm praying this med is affective for Avery and that it is also FDA approved real soon....as financial it is going to be extremely difficult for us....
Trusting God..HE'S in control!

Tonight(Weds night...early Thursday morn) Avery has already been up having a seizure party...
I hope he has a restful sleep as today(Thursday) is planned to be busy....


When I think ahead I think of ....Home...
Although I will be glad when we are there.....I know that it will be busier than ever....so please try to understand if I don't update ALL the time or return calls right away....

When I think ahead I think of.....Discharge plans!!!
We have excepted that this is our life and that when we discharge, it could be for days weeks or even months... we hope that when we can go home from this resort stay ....it will be for a while...



Avery and our friend Eithen Rose.....Tuesday out in the garden!


Prayers for our family are always welcome...and please pray for our resort family's as well!!!