God gets you through...even on limited sleep!!

He is OUR strength when we are weak:)


We went into "The resort " on Tuesday,(and I was going on like 1 hour of sleep)... when we arrived we were greeted with ..."Are you guys back again"..."ohhh what floor are you on".....to..." what are you doing here"...to...." WOW Avery looks great"...to...." I'm glad to see you here, as a visitor of course"...you get the idea...lots of familiar faces lots of nice comments...we miss OUR extended family at the resort...BUT SORRY we are NOT looking to go back for a stay anytime soon...NO THANK YOU!!

I was sad we didn't get to visit with our family friends ...The Hilliard's....they are still there, and their daughter has a central line infection...SO PLEASE pray for her...she receives her nutrition through this line and she has very limited line access....to read more about her and her story>>>>>

http://www.fromthebanksofjordan.blogspot.com/

Anyway...It was great to see many familiar faces ...but you know there's an issue when you know more people at the hospital than you don't know,or I should say they know you!!

We meet with the PACT team on Tuesday....and things went well;we are glad to have the support of a team such as theirs:)

Their kind way about them and how they spoke,made me comfortable with things I have been thinking about...in terms of long term things to consider:)....

PACT will come with me(us) on some up coming appointment's, if I request for their presence!

I don't think it's a coincidence.... that after meeting with the PACT team...The tone of our epilepsy Doctor seemed very different!
And I don't believe in Coincidences...it would be GODincidences:)

What I mean by that is....he was MUCH more ATTENTIVE than his usual self;
I also wonder if me writing clearly on the information paper I received prior to seeing the doctor and stating on that information form under chief concerns ...I WROTE "COMMUNICATION as one of my TOP concerns...which obviously leads to decisions/discussions about Avery's care regarding his neurological status and how it is affected by his Epilepsy and how to proceed with the course of treatment for his seizures!

Avery performed great for his EEG....to bad it was prematurely ...YEP..he had a nice cluster ....but unfortunately it was not recorded because it was while the tech was hooking him up....ohh well...such as life....it is what it is!

At this time our moving forward plan is to increase Avery's Depakote medication;and slowly decrease one of his other seizure meds.....He will have more labs next week, and we will be corresponding with the epilepsy team as often as needed!

I'm still processing OUR appointments/and the information.....but all in all it was a pretty productive day:)

Unfortunately ....We only made it to MY local appointment on Wed; for a couple of different reasons...they will be rescheduled ...One of my nurses was sick Wed, and I am so Thankful for the help from my awesome kids as we trucked to my appointment and did errands....more and more I see the blessings God has given me in my children!

We have 2-3 appointment's next week to meet with other some of Avery's other team of doctors!!

While I'm thinking of it....I want to mention how much we love and appreciate ALL OUR 4 HOME nurses(OK Avery's nurses)....We are so blessed to have each of you in our lives:)

I am appreciative of ALL your prayers/words of support/ encouragement for our recent appointments and up coming ones ....they truly help:)

1 Timothy 1:12- I thank Christ Jesus our Lord, who has given me strength, that he considered me faithful, appointing me to his service.

It is now after 3:00Am...we have got to stop meeting like this(ha ha)...so...that's all for now!
Love & Blessings to you ALL!

PS...I am apologizing now for whatever spelling errors I have made!