WOW...

It has been a Long time since I have Blogged....
I'm not gonna give you my excuses....Below is a small briefing of what has happened...

I am reminded by Gods word...when He says ...."I will never leave you nor forsake you"

December seems like a lifetime ago..

We came home on Dec 22, 2009 exactly ONE year from the time we came home from our admission in Dec 2008... Prior to coming home we celebrated 2 special Birthdays Devynn was 10 And Tyler was 15...Blessings they are to ALL of us...
It was great to have US all home as a family for Christmas( A Special Day ...Jesus Birthday ) Avery however slept through the WHOLE day ...he was swollen, slept allot , not real smiley ect...hey but we were home!!! Another of God's many Blessings to us!

We were re-admitted on 12/30 2009 ....

Back to the resort....this is Avery in the ER..waiting to go up to the ICU!!

We rang in the New Year at the "Resort".....as Avery's TPN was adjusted and he received a Iron infusion; during this admission, was treated for yet another infection ...we had several conversations and a Team meeting to discuss our potential plan of action in regards to contacting DR's , admissions , ect...I was pleased that one of our ICU attendings (doctors) agreed to be OUR primary (first)contact person for " Avery's medical needs "..he is also a great form of continually for our family; as he will come out to the house and see Avery and in the event he is admitted he will continue to be part of that team....

Happy New Year ALL!!!

Third week in January we came home ....YAY!!

It's great to be home....

February 2010 ---- Treated at home for another 1-2 infections; Avery continues to have Puffiness, but we Stay home.....We celebrated Andrew's 19th Birthday this month...At home as a family!

We start a new medication this month...prior to starting his feeds next month.
Avery gets his NEW bed this month ...YAY!!

Pain is still an issue...retching, vomiting, gagging....is not any fun...BUT we remain home!!

Avery gets his first hair cut this month...daddy did a great job!!!

Interviewing process continues with nurses, we think we have some good prospects.... however it doesn't work out....ohhhh well!!!

I have been rather lonely as I don't really see many faces; and I am as you know I'm a people person ...but I continue to count the Blessings I do have!

I am happy that a friend of mine has been visiting me every week; what a blessing !!!

March 2010---
*We start on feeds....8 mls a day over four hours
*Avery's pain continues to be an issue
*Seizures have been increasing
*We have visits from Avery's team and his doctor this month
*We have a conference call to discuss medication changes and thoughts
* Avery starts on Tobi Nebs this month; it is a one month on one month off so on and so forth
* We have Andrew's team meeting this month , I was happy that it was able to take place in Easton as me going to Andrew's school was too difficult!

I had not been able to participate in "Worship " at church since last Spring(other than a day in August; but I had to leave due to Avery seizing so bad)

It was a True Blessings to me to be able to go to see one of my favorite music talents and even meet him and tell him a little of Our Family story...Jeremy Camp....

Thank you to my brother Kevin and Debbie for "Walking by Faith " and just getting me the ticket ....and leaving the results up to God; whether I would attend or not....the whole worship experience was a blessing to me and Avery did fine with Joe and our nurse Kathy that day...Thank you to them for taking care of Avery so I could go!

I am thankful for my dedicated nurse Kathy; as getting nursing coverage is still a challenge...Kathy is dependable and here for her little buddy and it really helps me out!

More of an update and pictures to come...thanks for bearing with me!

For I know the plans I have for you says the Lord , plans to give you a hope for the future" Jeremiah 29:11

I am SO thankful for ALL the meals , visits and support that has come our way the last 1-2 months...Thank you!!