For those of you that are not on Face book .....I wanted to give you an update as to what's been happening....and express my gratitude for ALL the support for our family!

Joe and I have just completed the application video for an "Extreme Home Makeover".....
Joe is just putting all of our video footage together along with pictures and ALL the paper work so we can send it to ABC......

There has been a Face Book Page developed to help encourage and support us in this process!!
"MOVE THAT BUS FOR AVERY".....there has also been nominations posted on the "Extreme Home Makeover page(Under discussions...if you are interested; please ONLY post on the discussion portion of their page)

The response has been overwhelming to MY WHOLE family......and we are Extremely appreciative for this encouragement,prayers, and support!

"We are Preparing for Rain"
The above quote is from a favorite movie of mine(Facing The Giants).....

What does it mean you may ask?
It means that if you WANT God to act (perhaps answer your prayers).......YOU(meaning Joe and I in this case) need to do what it takes to be prepared to receive what it is we are asking for....
For(Extreme Home Makeover)

Here's a little example...
"If you had 2 farmers asking God for Rain and ONLY 1 farmer planted seed "
Which farmer do you think was "Prepared for Rain?"
I'll tell you ...the one who planted the seed!!!

Whether or not we are chosen for a "Home Makeover" ....is NOT up to us.....What we do to put ourselves in the position to possibly receive one is up to us!!

We NEED to "Prepare FOR Rain"


NO Matter what happens...We will give Thanks to God!!!

Pictures Below......



Gotta Love that OPEN mouth Smile!...We do!!
The Boss In His Red Sox gear!

My BOYS........they make their mom & dad proud!!!



That's OUR Avery...He says..."MOVE THAT BUS ABC"...Please!!
Love that lights up a room!
The place I spend 99.9% of my time(by Avery's side)....wouldn't have it any other way!!
How can you not smile when you see this face?!?!......Love that Andrew!

My guy Ty.....not real sure if he's happy or afraid of his freeze pop....lol

Devynn with her cousin Nate....had a lot of fun together!!!!


Andrew....Pretending that he's a golfer!!!!

~Avery has been sleeping a little more and is very pale...He s in need of Iron (he's very Anemic)~

Continued Prayers are always appreciated!!!!
Thank you...

God's Blessings on you all!!!

Love is in The HOUSE!!!

Big SMILES...He Loves his daddy!!


With the help of mom ...Andrew holds Avery for the first time in a longgggg time!


Me and all my boys...Andrew (19)Avery (he'll be 2 in June) Tyler(15)...ALL gifts from God!



Me and my littlest boy!

Grandma and her youngest grandson.....on Mother's day 20010!!! Big Smiles from Avery!



God's Promises......
Wherever you may be ...God's Promises is for YOU and ME!!!

Lives touched ....by Avery!!!!!


Avery & my long time friend Lynne......
A smile says things words can't say!!!!


Noni & Nanny.....love that little Boss....


Dad reads to the kids....in our make shift ICU room!!!---- they're reading a series---This is one of the kids favorite things to do:)
Even Avery gets to listen!!!

We ARE Family......
Loving each other as you can see!!!

Some people look at struggles as the end all and be all in their lives.....

I think it's an opportunity for you to grow ...I should say for God to grow you...If you allow him too!!!!

~Some Pictures.....Sharing the Love~


Avery with Big brother Tyler....He is the kissing crusader(Ty that is)

Hey Mom......Like my hat...it's orange??!!


Mama loves her little Boss~

Avery and his girls ....Caitlyn and his sister Devynn~

Devynn ---As Bert ( her hat is off) so you don't get the whole affect!!

Devynn ---As Bert and some of the cast (also her friends)!! What a great job they all did~
~Our FOUR Miracles~~

Avery and his friend Levie...can you believe that Avery is about 2-2.5 years younger than Levie~
"The Boss" .....in his seat!
~Me and my Man~
Our Family......All together!!!
Devynn in Consume for her play!
It was a blessing for me to Experience "Worship at the Jeremy Camp concert" ...and I also had the opportunity to meet him and Share a little of our family's story ~ What a Blessings!
Our Miracle Boss!
To KNOW Avery ...Is Truly a BLESSING from God!!!

He may have struggles, he may have pains .... his life is hard, but it is not in vain ..
For he is a blessing from Our God above ... teaching us a lesson on unselfish LOVE!!!

Devie loves her little Bro:)...Can you feel the Love!!!???
Grandma holds Avery .....and gets some smiles!!
Avery on St.Patrick's day ....sporting his shirt Kathy got him!!
Loves the fingers if he can get them in his mouth....often needs help keeping them there!!


~April /May~2010---

* What a blessing to be able to go to Devynn's show(in April) of "Mary Poppin's"
Although it was a challenge bringing Avery .....It was such a blessing:)

* Tyler went to the State House this month for an Awesome program --called Teen Pact...he had to get all dressed up and learned about how Bills get passed and many other aspects of politics along with what his role should be as a citizen ...he had a great experience!

* Andrew was able to hold Avery(he hasn't done that in probably a year)

* Avery had another infection ....lots of Respiratory issues
Many phones calls to the Doc....he was on 3 antibiotics and another medication
Never really found the source of infection, he did have a Resp infection, but not sure that would be what would cause a fever for 6 days

* Avery's pain is always an ongoing issue, which I work to address with the team regularly ...nobody seems to know what to do at this point, there are many days it is awful to see his pain

* Avery has been treated now also for Asthma and Allergies

* It has been nice to have some visitors; as it can get lonely----I really appreciate the fellowship and encouragement

* We had a very scary experience with Avery after his infection this last time....
Due to Avery having a Resp infection...I needed to change the Trach( so NO water bugs would attach to the Trach after the course of antibiotics .....this is not an uncommon thing to do!
However----it didn't go so well....the Trach wouldn't g o in ...wouldn't go in...I tried the smaller one that wouldn't go in either...
Thankfully my nurse was able to pop the old one back in ....(the one we just took out)
We then bagged him (as he was BLUE/ GREY)...

Anyway----I was then able to get a new Trach in ,but this was an experience I hope to never have again...Thanking God for getting us this!

Lots going on....As the usual...but appreciative to God for ALL the many Blessings:)


Noni and her boy...she was SO happy to hold him!!!


On a Side Note----
"We are finally getting the application completed for "Extreme Home Makeovers"

A day in OUR life----

The last few months have been such a blessing for us to be home...Although there have been many times that I thought I have had more interaction with people at the "Resort " than I do at home...

BUT...to say it has been easy.....would be untrue!

In ALL things I am thankful for IT ALL....in Blessings and in Trials...God is good through it all!

You really find out about the stability of your marriage and the support of your friends and family; when you endure the things that have come our way!

One of the things that I have learned over the past few months is... God is always there no matter what, when or where...when NO body else is or when it seems like the walls are crumbling down.

Here is what a day in OUR life may look like...

Each night is different....we may be up for hours, we may not be....a new day ...Every day!!

5-6Am Avery's Start Meds( 3 medications)
6 AM ---Get Andrew up & ready for the day ...he needs help in all areas of this process
6:50 ---Andrew leaves for school
7:00 ---Finish up meds for Avery
Andrew's bed gets stripped and in the washer( if we remember; before being pulled to do something else)

Sometimes Avery may already be awake...
In that case...We....Change, temp, suction, bag, console.....ect ect

8Am---Joe gets ready for work and is off at about 8:30-8:40---Thanks Joe for all your help this AM!!!
(Joe usually starts the 6 AM stuff and gets Andrew off to school)

8Am---Meds Start(5 medications)
Each medication time takes awhile and sometimes longer if he is gagging, retching... ect
All medications go in his J-tube(except one med @ 5 PM)

Change diaper again( check his urine for glucose levels ect)
Give inhalers(through ventilator)
Give nebulizer (through ventilator)
Bag / Suction...ect ect

9AM---Make sure other kids are getting ready for the start of their day as they are home schooled!

After 8AM meds are completed ...we start feeds (about 9AM)
Avery gets about 10-13 mls of feeds over 5 hours long!

Many Many Days Avery needs suctioning SEVERAL times in the morning!!!

Avery's AM cares consist of....

Washing him from head to toe
Hair , back, face, hands, fingers, toes, feet, legs....ect ect..
Cream on face, lotion on body, G/J tube care and dressing changes, ointment applied, change 02 probe , clean probe, mouth care, Trach care----turn 02 up for that , bagging, suctioning, instilling in trach water( so his secretions aren't so thick....getting him dressed (which is not always an easy task), putting AFO'S on...(AFO"S on as tolerated)

*Avery is getting new hand splints soon!!!

*Avery needs ......SO many things throughout the day that I would be HERE all day telling you!

*Continuing giving feeds( I slow push them)

*I also conduct school.....during the day with 2 of my kids!!!

*Between 10-11 Avery's TPN is complete( unhook his line) flush his Port
*Avery usually gets up in his chair....or mom holds!!!

1PM--- Meds(2 medications)

Avery has alot of pain so consoling throughout the day with rubbing belly and chest PT
2PM---Inhalers(through his Ventilator)

* Re-stocking Avery's supplies ordering Avery's supplies...

*Ohh yeah my house.....that needs attention(not sure hen...ha ha ha)

*Avery has therapy 4 times a week...
*I administer a blood product twice a week

*Avery has Trach care 1-2 times a day

*Avery gets his Trach changed monthly (or more if needed)

*TPN --take out of Fridge about 2-4PM

*Andrew gets home at about 4:15----Good times begins with him(it takes 40 minutes sometimes to get him to take a coat off) !!!

5PM---Meds(3medications) 2 in the J-tube 1 in the G-tube

*Suctioning/ bagging ----whenever needed throughout the day

*Re-positioning Avery --throughout the day !

*Doing school work ---Throughout the day!!

*Medications need to be measured and drawn up ----

*Syringes need to be washed---

*TPN hooked up....AT ABOUT 6pmISH

Joe is home about 5:30---
Dinner time, catch up with everyone...clean up make sure Andrew stuff ready for the next day
Joe will read to the kids if possible---they all love this...

Are any of you tired yet!?!?

8PM---Meds(4mediations)

*PM Care ---IS Much of the same as in the AM.......

*Inhalers, Nebulizer treatments...Suctioning...Trach(if needed)
*In the middle of my day ....at some point I may take a shower!!!!

10 PM Med(Only 1)

Avery has PRN orders for medications as well....so as needed he gets more than the above!

We usually can go to bed about 11P-12A----It ALL depends...Then it starts again!!!!

Praise God for Each New day..Count your Blessings...I am Thankful for all that I can do to keep Avery home!

Avery has NO schedule ---So he sleeps when he wants ...how he wants!!!!

Avery continues to have pain, seizures , de-satting episodes....

Until this point we have only had ONE consistent nurse...we are happy to have another one hop on board this week!

I have appreciated everything and anything anyone has done for me or my family....