A Walk By FAITH - Amazed By GRACE

2010-12-24T13:03:00.000-08:00

This is
A Christmas Message----MORE Pictures and updates in the coming weeks!!~

Wheels for Avery----We have been blessed!~ and are thankful for ALL Of YOU!~
Brothers Keeper this Dec....
Serving others....
This YEAR God has Continued to Bless our family--- There will be an Avery update for the first of the year ...this update is really a Christmas Message/Letter!~

I am reminded that ALL God wants for Christmas is YOU!!!!

This year I am once again humbled....by what God has given me----I am honored that He has trusted me enough to be who I am for HIS Glory ...

I spoke of Mary And Joseph 2 years ago in my Christmas letter; and believe that if it is okay for us to receive things on Christ’s Birthday and talk about OURSELVES and the happenings of our lives each year...than it is certainly okay for me to remind everyone of JUST what was happening to Mary and Joseph at the time of Jesus Birth...

As a mom we are protectors, nurturers and caretakers ,and we love our children before we even meet them …we are often the first face that is seen ….the first heart beat that is heard ….we are who God created us to be for a reason….
While even in the womb we protect our babies by doing whatever we need to do so they will be born healthy and whole…. we nurture our bodies with the food and the proper exercise that is needed for that baby to continue to grow from within ..And we also take care of our homes ; that place in which our babies will come home and share with us and our families…. We love unconditionally…meaning there is NOTHING that child can do to gain OUR love for them….

God’s LOVE for US…HIS children---
1 Corinthians 13:6-8 ⁶Love does not delight in evil but rejoices with the truth. ⁷It always protects, always trusts, always hopes, always perseveres. Love never fails

Thinking About the coming Birthday of Jesus..Reminds me; or should I say makes me go back and really think …… Mary was just a young girl; told by God that she would be birthing the Christ child…Do you think Mary protected her child while she was pregnant….did she nurture the baby that lay within her womb….how about a caretaker ..Did she work to prepare a place to have her child, did she love that baby?

First of ALL God protected Mary and choose Mary ….and she was obedient to God ; by excepting God’s CALL..I believe that he gave Mary the abilities she would need to protect that little baby; while he lay in her womb…..During her pregnancy Mary was ridiculed as was Joseph and their families; she was looked down upon with disgust by many ….She was turned away and talked about….but still she did what God called her to do, and that was carry and protect that baby within her.

Mary was such a young girl(probably NO more than 14-16)…..can you even imagine what it must have been like for her, think back to what you were doing when you were that age…Okay….Now think about how you might respond; if God called you to do what it was God asked of her….To be told that you will Birth the Christ child and call HIM Emmanuel; which means Lord with US…
The responsibility alone of becoming a mother is overwhelming for US all.

I was a young women myself(not 14-16…but still a teenager) when I was pregnant with my first child, whom was not conceived at a time or the way; that was desired by God…I was talked about; I’m sure ridiculed, as was my family… I was looked down upon; but does that mean that my son was not going to be protected, nurtured & cared about by his mother(myself) or by God???…NO
I am in NO way comparing myself and my life to that of Mary…Did God come to me…. did an Angel speak to me like was spoken to Mary???...NO…

The Angel appeared to Mary----
Luke 1:37-39 ³⁷For nothing is impossible with God." ³⁸"I am the Lord's servant," Mary answered. "May it be to me as you have said." Then the angel left her.

He did not come to me physically or as did an Angel, but in many ways YES; God did come to me and continues to in my almost 20 years of motherhood….scratch that my 38 years of life!

You may ask How so?

God has spoken to me through my circumstances…other people and of course the words spoken in” The Good Book (The Bible)“….
Well when I became pregnant at my young age … as you can imagine; this upset my parents, I was not married, and unlike Mary I conceived in the natural way…..My mom’s first response after digesting the thought that I was pregnant was an expected one, coming from a Godley women as my mom is…she said…“I don’t believe in abortion” ....My mom knew that even though this was not the ideal situation…the child I was carrying was still a precious gift from God …I am thankful to God that my mom(& dad) raised me to know the value of life; because even without her saying anything ;abortion would never have entered my mind nor would it have entered Joe’s mind.

Having Andrew at the time in my life that I did …I grew and learned so many life lessons that I otherwise would not have learned…..Was having a child; prior to marriage really what God wanted for ME (US)???…NO….Did he protect and guide me (US) during this time in our lives and through the years???…Absolutely….. Have we since learned anything by doing things our own way and not Gods way???…We certainly have….All of our children have been used by God to help US grow closer to HIM…..

God has spoken to me by answering my husband’s prayer of giving him(US) a special needs child, God has spoken to me by answering my son Andrew’s prayer and giving us another child like Andrew(with special needs )…God has spoken to me through my son Tyler; and his continued learning challenges, God has used Tyler’s challenges and his life to teach me MANY things that I otherwise would not have learned; God has spoken to me through my daughter Devynn; whom is like me in so many ways(but much wiser than I was at her age)…but yet so different ;that I sit in wonder at what a gift she is to our family…. God has spoken to me throughout ALL my years. ….. It just took a little while for me to take my ear plugs out and listen, and take off the blinders that were blocking my vision.

Gods timing is perfect …..We just need to throw our plan books away and not just carry HIS book around, but actually open it….that book would be the Bible!

What is it God has been saying to you this year or in ALL your years …..DO you have things in your life that you have no control over …Is there things you would like to see different???

Have you ever thought about the fact that Mary …DID NOT plan to have a child at her young age, she did not plan to have doors closed on her ….She did not plan to give Birth to the Christ child…. Nor did she plan to have HIM in a place most of you wouldn’t even put your house pets …..It’s called a Stable in a Manger….

Mary was obedient to God and HIS plans for her life and she Walked by Faith …NOT by Sight!
It’s not just Mary in this story …Joseph received many things because of Mary’s pregnancy and it was not a cigar and a pat on the back from others ….

Like Mary & Joseph; God has protected Andrew, Tyler, Devynn, Avery, Joe and IWe have had losses and many storms in our life ;does that mean that God was not there and does that mean he was not protecting us …NO… …

As many o f you know; I would say OUR kids are truly a gift from God and as my husband Joseph would say .....and a gift right back to God …and I can’t say I would argue with that statement…

When Mary and her husband Joseph brought in to the world the baby Christ Child....Can you imagine how scared and frightened they must have felt….eating meals on a regular bases, was probably a challenge …I bet there were so many emotions and things going through their minds ….I imagine Joseph even went without food to make sure Mary ate in order to nurture that body of hers and the one within her womb …

Luke 1:29-31 ²⁹Mary was greatly troubled at his words and wondered what kind of greeting this might be. ³⁰But the angel said to her, "Do not be afraid, Mary, you have found favor with God. ³¹You will be with child and give birth to a son, and you are to give him the name Jesus.

Through all my pregnancies eating was never an issue…but thinking back just 29 months ago ,when I was pregnant; and awaiting the early delivery of Avery…..this delivery was not in a stable or a manger and it was not just Joe and I …it was in this high tech Boston Hospital with all the technology one would need, want or hope for….I have to say I was scared; and this was not my first pregnancy ….it was my ninth in fact …why was I scared you may ask ….Well because there was talk that I may not make it through the delivery …. I was scared of leaving my husband ,my kids, and family…..I understood and knew where I would be going if God had chosen to call me home, so that was not what I was scared of …BUT…I bet Mary was scared ….and Ohh man Joseph …I wonder how he must have felt….

And can you be scared and have a sense of comfort all at once??....

Although I was scared I also had a great sense of Peace ….it was God that gave me that Peace; it was through the Flash of lightning and Thunder of a Strom moments before my delivery ….it was God speaking to me, showing me that I need to continue to Walk by Faith and not by sight…it was Peace that I will never forget.

I wonder if that is how Mary and Joseph felt….
It is my thought that if you are obedient to God and his calling in your life; he will give you EVERYTHING you need to get through whatever it may be….Will it always be what you want or think you need….probably not….

At this Christmas Season I just wanted to give you something to think about….DO you have that reassurance of knowing where you are going when your time comes to leave OUR Earthly home??? Do you know what it is God really wants for Christmas???
Well ….If you don’t know …..you can ask anyone of my family members (although I don’t think Avery can verbally tell you) …In this BIG thing we call life on Earth there is always a beginning, middle and end….what you do with the time in the middle will decide where you go in the end….

Please…Keep reading to see what it is I am saying….

So God has protected Mary and Joseph through there many storms and provides them with the food needed to keep Mary strong through her pregnancy ….

God obviously choose Mary & Joseph because he believed she would be the caretaker, nurturer, protector needed to birth and raise the Christ child….God wanted them ….God called them …and they answered!

Matthew 1:24:
When Joseph woke up, he did what the angel of the Lord had commanded him and took Mary home as his wife.

You know last Christmas Season someone said something to me that really struck me…..and it was in a way that made me think…As many of you know I had been living at Children’s Hospital with Avery for several months ...3-4 months in the ICU ….Most of you know me to be a nurturer; even to those that are not my children, caretaker if you will….I enjoy doing it and I think it’s one way God is using me to show his Glory…I work to NOT mope around all day and I’m pretty cheerful….and try to make the best of a not so great situation…Well since it had been the Christmas Season I had been playing LOTS of Christmas music and singing to Avery …and HE loves it….Well …a person I saw rather often at Children's made a comment like…”Oh you’re not listening to that-- Christian Jesus Christmas music are you “???...I was a little taken back, I didn’t know what was meant by that at first ….then I said “Well Yah what do you mean Christian Jesus Christmas music”… and the response that I got was..." that music is getting to be too much Jesus Jesus.. ..I then said “Well it is His Birthday after all and it is about HIM…Nothing more was said after that….

The reason I share this with you is because it really struck me…….
Why are you celebrating Christmas….????NO ....Really WHY??

We all get so hung up on the material aspects of Christmas; and often times ,it is so self focused, we are hung up on …the gifts we have to buy …and ALL the decorations we have to put up and ALL the money we have to spend, the LIST goes on and on …that we tend to lose sight of what Christmas Really is… we lose the meaning of Christmas(not x-mas…CHRIST-mas) ……We forget about that teenage girl that was so unselfish she put Gods call on her life before her own self…Mary knew that ALL God wanted for Christmas was HER….

You might ask yourself similar questions I might ask myself…
Why would God choose me….We(Joe and I)had a child out of wedlock…..we don’t agree on everything; yes; we love each other, but we are NOT perfect…Our son Andrew, he had a stroke as a baby ,he will not be able to manage his own life, due to his challenges …why would God want him…..he’s NOT perfect…What about Tyler his reading is a challenge and he makes uncontrollable sounds often times…he’s NOT perfect…..Oh and what about Devynn….She has some issues with her attention span and her organizational skills are something she works at constantly …so she is NOT perfect …..And then there is sweet Avery …He has more challenges than one can count….and is NOT perfect in the eyes of others anyway….

DO you think Mary & Joseph were perfect????
NO…they were not!

If we were ALL perfect …there would be NO need for a Savior in OUR lives….
Jesus is the Only perfect…HE was without SIN….

Joe and I are not the PERFECT couple; but are we working each day to glorify God with our lives; has God made US just for each other ….YES... I think he has and I think we are doing what God would want…with always room to grow and learn TOGETHER….

Andrew is not PERFECT…but do others light up and smile when they see him, does he brighten others days without even trying, does he have a love for others that is seen in his eyes ..YES he does….

Tyler is not PERFECT… .but is his desire to please God present in his life; does he have a Servants heart …YES…he absolutely does!

Devynn is not PERFECT….but is she caring, compassionate, loving to her family and those around her…she most CERTANILY is….does God USE her for his Glory….I believe he does!

Avery…ohh…little Avery….No he’s not PERFECT…..but, even without words that can NOT be spoken …he has a SMILE and a look of love in his eyes…that comes from God alone…
GOD has and IS using Him right now ….Avery and all his challenges (BLESSINGS) have brought others closer to God ....

Mary and Joseph were not perfect….but did they obediently serve OUR Lord ....did they give everything within them to answer God’s call on their lives….YES they did!!!

My son Andrew said something to one of his uncles….and it really made me smile…and think …even though Andrew has all his Challenges and he is NOT PERFECT …HE gets it, he gets what really matters ….although he might have been silly/fresh to his uncle…..the below comment really GOT to me!!

While driving in the car with Uncle(Kevin) and Tyler, a discussion was taking place and Andrew apparently wanted to say something (I believe he was interrupting) but it was NOT the time and he may have been arguing a little with Uncle …..So Andrew said ‘Uncle…Don’t argue with the Creators Creation”

When you think about Christmas this year ….Think about the Creator…think about how he created you….think about Mary and Joseph and their obedience …Think about the only thing that GOD really wants this Christmas ….

HE Only wants you…YOU…YOU!!!!

John 3:16-17
"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.¹⁷For God did not send his Son into the world to condemn the world, but to save the world through him.

With God's Love and Blessings, The Austin's

Grace,Joe,Andrew,Tyler, Devynn and Avery

Our dear friend......visits and prays with us!!

A Father's Day Perspective - By Joe Austin

2010-06-22T20:24:00.001-07:00

Here is the link to the video of the speech that Joe gave to our church on Father's Day. He gave it at both services, in front of about 400 people.

http://www.youtube.com/watch?v=k_IvlMOjkn4

2010-05-31T18:36:00.000-07:00

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!!!

2010-05-29T04:57:00.000-07:00

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!!!

2010-05-28T11:51:00.000-07:00

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!!!!

2010-05-27T19:09:00.000-07:00

~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!!!

2010-05-27T18:17:00.000-07:00

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"

2010-05-27T11:54:00.001-07:00

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....

2010-05-27T07:53:00.000-07:00

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!!

2009-12-10T00:30:00.000-08:00

AS many of you know........

I am not am MD.....but....I am thankful to God for the MD's.....but I am an M.O.M

You also may know I document......EVERYTHING!!!!
Please visit Joe's store and check out the designs I have created...If you are someone or know someone with a sick child or medically challenged child you probally also know a MOM or are a MOM that would really appreciate this shirt or other products......
http://www.zazzle.com/jhaustin/gifts?cg=196692342134902564\

Loading High Resolution...

HAPPY 15th Birthday to Tyler ....... What a huge blessing to US ALL!!!!!
I am so proud of him.......

Below is really just a PICTURE journal of some recent times here at the resort..with a brief update....May you ALL Remember that Jesus is the reason we celebrate this Season....

ALL God wants for Christmas is YOU!!!! and it is HIS Birthday after all:)

AVERY is showing you the sign that was made for his BIG brother Tyler....

Just smiley

Haaaaa ....that was so funny mom

Why don't you just let me change the Vent settings myself mom...Please????

Music time

Avery is saying "Happy Birthday Tyler....

The fabulous Four together ...again!!

Mom and her Birthday boy

Me being me

Hey there everyone...how are you today??

Sporting moms hat......

Mr.Blue eyes!!!

Who's a Happy boy???

As I was saying mom......you can see all my teeth if you just look right here:)

Avery has an extra chin going on

The OLDEST and The YOUNGEST!!!!

I am somewhat happy to say that my suspicions have been correct about Avery's GI tract....
Avery's de-sats have correlated with his GI pain and.... since NOT giving him anything in his G-tube and only venting him ...his de-sats and turning blue have been significantly decreased;from 20-30- episodes a day to maybe 1-2 every couple days Praise God for that!
He has been getting ALL medications in his J-tube...and now he has been getting his feeds in the J-tube....however he is still gagging,retching....he gets medications so frequently that he is off feeds for 9-13 hours a day....NOT a good way to really see how he is handling feeds;let alone increases in feeds.... at times his gagging/retching,ends with loads of stuff coming out of his nose...YUCK!

Avery is still not being fed in his GI tract(G-tube)...and we are not sure he will ever be
He is still getting TPN Total Parental Nutrition for his nutrition and WILL be going home with TPN (as that is the plan as of now.... )He gets his fats,nutrition through his Port Catheter..... AND it's working as of today he weighs...Are you ready???.......23 lbs 8 oz...WOW...the goal is to work feeds up VERY slowly....and then work pour way off TPN
We have been working with Avery's primary GI doctor and the consulting team;they are rather stumped as to why he continues to retch and not handle his feeds/medications...
Avery has started a new motility medication....his retching seems slightly less;but gagging and reflux/arching is increased and pain is somewhat increased
Avery is on antibiotics for the THIRD time this ICU visit ...he has another infection;thank God it is not a line infection:)...the course of this medication should be complete after about 10 days of being on it
Avery remains on the vent and the PLAN is to go home with the vent
Overall Avery's seizures have much better than they have been ;but somewhat increased the last few days ....his medications have been increased ...YET again!!
It was during a discussion with the neurologist that I was told Avery has--- Lennox–Gastaut syndrome (LGS), also known as Lennox syndrome, is a difficult-to-treat form of childhood-of epilepsy and is characterized by frequent seizures and different seizure types ...this was not a surprise to me
Avery may have Horner’s syndrome---Horner's Syndrome refers to a constellation of signs produced when sympathetic innervation to the eye is interrupted.Horners Syndrome....which it appears happened after surgery's in Oct....this just has to do with his pupil size/dilation... An interesting thing to note is ---OUR daughter Devynn has had Horners since birth!!! things that make you say hmmmmm
We hope to be home for Christmas....but God only knows
Avery's pain is continuously addressed...this is regarding his GI pain ---
Due to one of Avery's seizure meds his hair is thinning......I have been told that it will decrease...
I have been getting Avery up in his chair more often and he is doing better each day) Praise God!!!
At separate times; Joe and I have both replaced the Trach ..we make a good team!!!
I do trach care daily and it is going fine;Avery had to have some granulation tissue silver nitrated(burnt off )
We have been doing vent training and I set up one for our home vents here at the hospital yesterday ...YAY
I have de-accessed and accessed Avery's Port...YAY
I have drawn up Avery's Thrombate (Blood )..
We have LOTS to accomplish to bring him home by Christmas....continued prayers would be appreciated .....
He will likely go home by ambulance.....

These are some of the things that have been going on and things that we need to have done before we go home...We are working on getting approvals for a special bed for the Boss.....among MANY other things.!!!

In all of this ....I am so glad that God is in Control.....prayers for ME as I continue to keep that at the for front of this Life God has Trusted me with.....God never said it would be easy.......We should all be delighted to know he has Trusted US enough with challenges in our lives....

This Little Piggie went to Children's Hospital

This Little Piggie Stayed HOME

This Little Piggie .......got eaten up...and the others ALL ran home!!!!ha ha ha
A little note.....
We call our kids The Three PIGS and a Baby...PIGS...Portuguese,Irish ,Greek,Swedish

Practicing to access the Port.....on Chester!!

I just wanted to THANK everyone once again for ALL your kindness,prayers and supports you have given to our family....YOU may never know how much it means to ALL Of us...We Thank God daily for YOU!!!!

Thank you in advance to those willing to help as we prepare (Cleaning Party Sat)for Avery's home coming before Christmas....
May God contnue to Bless you:)

Remember what's important as you approach this CHRIST -MAS...

2009-11-17T12:00:00.000-08:00

"My Lifesong sings to you.....And I will Praise you in this Storm....I will listen to the Voice of Truth...Cause Who am I"..
I am yours Jesus!!!
Some powerful songs that have gotten my mother through some of these Times!!
By:Casting Crowns....

TIME....what you are you doing with yours????
Here is how I have been spending some of my time!!!

Avery is still looking like a marshmallow...although a very cute & cuddly one!!

Today NOT such a good day .....many seizures!
Well it's nice he has Tiggerrrr to keep him company:)

His swelling actually got a bit worse on this day......Regular dosages of Lasix was stopped!

Some of Avery's primary nurses from 9 east came by on this day...and Unfortunately he treated them with a significant de-sat episode;where we had to call his ICU nurse to assist.....not something I'm sure they wanted to see....but I was glad to see them,even if it was only for a couple minutes!!

Avery's Nurse Practitioner Sara who is from 9 east came by to see her guy!!!

A happy moment when he is greeted by a couple of his favorite people.....Daddy and Devynn!

Smiles for them....Hey I'm here all day ...when do I get mine.....ha ha

I just love capturing his happiness.....and it is so nice to see,considering what he goes through on a daily bases!!!

"Hey Dad....did you know that I have the best sister in the whole world?" ...really really she is...she is such a dedicated,loving caring and wonderful sister who comes to see me every day!!

Hey dad......can you see my two top teethes???...they are coming in good aren't they ??

DR. Devynn is on the job....what job I'm not real sure ,but she's on it!

There's Mr.Puff boy...and no I don't mean Puffy daddy.....you can still see Avery's little dimple on his chin!!!!...got that from his Grandpa Joe!!
Daddy comforting the boy!

Dad....the reason I am looking at you like this is becasue ...I like this position...I wish everyone would stop moving my head back to the center......please just let me be the Boss!?

Mom loves the boy....and is trying to figure out what he is going to do with that arm!

Okay Avery I figured it out....you want me to know you don't like what's in your neck...so your going for neck!!!

HEY MOM......can you tell everyone that is praying for me ...I say"Thank you...God Bless you all"

I love you mommy...I love you too Avery:)

When I found out I was having a girl...
I was a little nervous...
That I wouldn't know what to do
NOW ten years later....We are as close as can be ...
and
I thank God daily for giving this wonderful girl to me!!!! Love you Devy!!!

He's looking at you......

We are family...my mother ,my sister,my brothers.....
OHH and dad behind the camera..and ME!!!

He is looking up to those he loves.....

My big brother is a good one to look up to...

Hey there

Gotta love kisses from Tyler

And hugs...and more kisses

Mom and her littlest guy....."Mommy....I am Thankful to God for ALL the people who pray for me"...."I am too honey!!!"

The Fabulous Four!!!

"daddy ....Let me tell you ...How my day was!"

I was minding my own business;trying to get my rest ....and all of a sudden....
I felt like I had rocks in my belly...it was very uncomfortable.....but mommy rubbed my belly and I felt much better!~!!

Are you listening daddy???...Cause this is serious stuff here.... Then the rest of the day .....my mommy would rub my belly every time I started to turn blue and feel like rocks in my belly ...it was great...NOT the turning blue part...but the belly rubbing part....My mom she is Okay in my book!

Ohh man....one of the kissing bandits are at it again.....boy...it's a good thing I have this tube out of my neck to help me breath....I can barley catch my breath and someone else is coming at me with more kisses...don't get me wrong there great.....but don't they know I have sensory issues....a BOSS ...needs to have a little space sometimes....
LOL....just kidding...I really do love kisses....

Sister..can you feel my nails.....they are sharp huh!?!?!

Just me being ....well....ME!!

See how BIG my mouth is????? it's ...THIS ...BIGGGGG...the better to Kiss you with!

These are my fingers...I put them in my mouth ALL by myself.....NOT bad huh!?!?

And if you look close you can see I am getting my 6th tooth...I am such a big boy now!
Okay maybe you can't see it...so just take my word for it!

Our attempt at taking a family picture ourselves....it was comical!!!
Time spent well with our kids!!!

"Yes sister I am listening to you....but I need to also give my oldest brother some attention too....you understand sister ...right??"

Hey everyone......can YOU see MY TEETH NOW...aren't they great!?!
The better to bit you with...ha ha ha...just kidding...I wouldn't do that!!!

Just chillen......

Tyler is unmasked for a moment.....

Brotherly love......I really do look up to you brothers...and I think you are pretty great!!

See what I have to go through daily.....UHG...can a Boss get a little space????
Just kidding I love these guy...and their endless kisses!!

"Mom... wasn't ready for that shot ...can you give me a chance to be ready for your picture taking ...Please???"

"See that's much better"....
So daddy it's good to see you..How ya been...let me tell you about my day?!

"Yes daddy....I have been a good boy...
but my belly really has been hurting me...and I am cutting more teeth ..UHG ...can you believe it "...How was work daddy??...I missed you today:(...but you are here now and I am happy!!

It's it nice to be able to hear my voice again daddy.....I can't wait to sing again with Joanna.....and of course play the guitar...I love music daddy...and I also can't wait o sing with my singing partner"Uncle"...God wants us to sing a joyful noise...and I want to listen to God!!

Where is Devynn.....?????she got lost ......

Ohhh there she is.......NOW that's a look at some of our TIME spent ...

God only knows how much time we all have...How will you use your time??

"For I know the plans I have for you say's the Lord"

AN Avery update of His continued TIME in the ICU...Today 11/18/2009
When you have a plan...always keep in mind it's Gods plan that is carried out!

Avery had his Trach surgery Friday 11/6 and came off the vent on Saturday11/7......for that we were so glad....but unfortunately it didn't last!

We can have this big idea and plan to do something because we think it's what should be happening....but then you have Avery who says "back up the bus & get out of that seat...cause I'm driving it.....well God's driving it and I'm the co-pilot....mom's the co co -pilot"
( You do know the co co pilot is the one changing the tires ...and you couldn't get very far without those tires...ha ha..lol

Update of some Avery moments in "TIME"....Things that have happened From:Saturday(11/7)--to-Today(11/18) Weds
I hope I don't confuse you to much with my updates this time around...as I started this blog post last week...so some of what you may read is something that has happened and some is more recent NEWS....

Avery was Off the Vent over a week and a half ago today---
Increased Seizures also took place on that Saturday
Significant episodes of de-saturation's occur over that weekend and continue this week,with a not so nice color changes
Some changes in vital sings when de-dates occur
Pain medication is being manged more closely
Avery goes back on the vent Wed(C-Pap)...1 week ago today...to see if this helps these de-saturation's..... he is on minimal settings
Not real sure how much these episodes have decreased with the c-pap machine
I have continue to think that these episodes are related to Avery's GI tract
Questions of Pulmonary Shunting---but the Cardiologist thinks it is an unlikely primary cause
Questions of Pulmonary Hypertension....again the Cardiologist does not think this is the case...however both of these were questioned because of these de-sat episodes--neither of which continue to be in discussed at this time
Apnea has happened during sleep periods...and vent settings needed to be adjusted....this is not the case as of right now,but was taking place
He is VERY VERY PUFFY ...as you will see in many of the pictures.... lots of fluids on board....we are monitoring this and giving lasix as felt is it needed...He actually is not as puffy these last couple days.....but I see him all the time and I might not be seeing it as much....
Seizures continue to be an issue....increased medication is being given at almost every shift sometimes more than once,his seizure medications continue to be adjusted
Avery has still a lot of secretions...so we are not sure that surgery was affective for him...(the saliva reduction)....
Avery had started to be G-tube feed ....however we are stopping feeds and venting him (letting the air out of his stomach...you know how you would when you burp or have gas)as much as possible ---we want to see if my theory of his GI pain is accurate... and also see this may have some impact on his de-sat episodes......NOTE----Avery is NO Longer G-tube feed as of several days ago......

A little explanation......about the above GI tract....and feeds
The reasoning for this suggestion(one that I brought up to the team at rounds many mornings ago)is that there are a couple things that changed 11/6/09 and -11/7/09-- Friday/Saturday......
1.Avery had his Trach placed
2.Avery started on feeds
3.Venting him continuously from his stomach stopped

With the surgery Avery had he should not have an issue with feeds in the stomach,however there are some kids that continue to need to be fed in their Jejunum.Avery has always been someone that needs to get the air out of his stomach and can not do it on his own,so venting his stomach is as much necessary now as it was before..... you and I can generally pass gas,Avery is not able to do that on his own..hence the reason for venting him...

More of an update....

He has been gagging/arching(we shouldn't really see gagging anymore,but we do) with this pain he has,I have been rubbing his stomach since really pursuing that this is GI related pain and IT works,he may de-sat really low and his heart rate may be really high ,but tummy rubbing has really made a difference overall.....

We stopped G-tube feeds several days ago;as mentioned above
He is on TPN ...IV nutrition,because we have not been able to have him on adequate tube feeds for any period of time

Yesterday we put in a G/J tube again----So we can attempt to Feed the J and vent the G...that's the hope.....but our hopes and plans may not line up with what the REAL PLAN is!!!!

We re-started feeds in J-tube yesterday ...which did not last long at all

We put Meds in the G-tube...against my judgment

Avery vomited---something that generally shouldn't happen considering he had a Nissen Fondoplication....but unfortunately things don't always go as PLANNED....oh well what can you do....we will keep moving forward;cause we can't go back....

The Surgeon thought going back to a G/J tube was perfectly fine,he knows of Avery's gagging prior to his G/J tube change..He now be will be notified of Avery's vomiting--it is possible the Nissen was wrapped maybe to loose....We will talk to the surgeon whom has always been very kind..

We will ask the Surgeon if there needs to be a upper GI test done again and if a gastric Emptying needs to be done again.. I had spoken to the surgeon the other day in regards to his emptying and had said it could have been slowed down after the surgery and said that could explain the gagging...and he could do a surgery to help with the emptying of his stomach
All of the decisions Joe and I have made have been prayed about and considered thoughtfully.....Further surgeries at this point is not something we believe we will do with Avery...Giving him a good quality of life is why we did these surgeries to begin with.....since a couple of these surgery's may have not worked the way we had hoped, we still made what we thought was the decisions that God would have had us make.....we are pleased that Avery now has a very accessible air way ..that being the Trach....
Today his work of breathing is increased.....but today he is OFF the BEEPING machine..YAY...I pray the beeping machine(The ventilation machine) gets to stay here and not come home with us....
He has increased secretions today....but are easier to suction with the trach
Joe and I have been doing OUR Trach training.....and tomorrow we will change the Trach for the first time and do Trach CPR......
As I sit here I looked over and saw a bunch of GREEN bile coming out of Avery's stomach(his venting bag)...Yuck!
The time is 4:35 11/18/09----Unfortunately as of about 10 minutes ago ..Avery went back on the vent...his SATS remained low off the vent and his work of breathing had been .......increased......Bummer...Ohhh well....we will try again another day to do, little times off instead of BIG sprints off....The vent is not really on at this point because of the de-sat episodes he has with his pain, it is really back on for his increased work of breathing and low saturation's.....
We are getting a X-ray today ...because of his vomiting yesterday and some that he had today...come out of his nose

On a side note---
I was thrilled today ....when at our medical team rounds(which I always go to) the attending Dr (head DR)...says 'Listen to Mom she has a plan...and we will do things the way she wants them done"(this was regarding Avery's GI tract/feedings/meds...ect and me suggesting him coming off the vent..at least try to have him come off).....I am so thankful to God that he has given the gift of a mouth and that my mouth is being heard...

Thank you all for your continued prayers support,and TIME you have and do give to OUR family...My mom is feeling better so thank you for the prayers....My Friend Kayleigh still needs surgery ,but does not need the surgery they originally thought......
Thank you all !!

Thank you Jesus...for FOR what you have done,what you do,and what you will do!!

Prayer Requests----
Please pray for The Manning Family ----

Karissa attends Sunday School at the Fellowship....

Karissa was just diagnosed last week with cancer. 13 years old. She is being treated here at the "Resort"...Please pray for this family!!!

Please pray for ALL My CCS (Complex Care Services )family/Friends that are here with their children

Please pray for family's that have sick loved ones or have lost loved ones and may be struggling....

Please pray for my Brothers Keeper,as they allow God to work through their ministry again this year...
www.mybrotherskeeper.org

As we approach this holiday season..Think about TIME!
What has God showed you,done,given you,opened your eyes too, helped you through,allowed you to experience????

I am Thankful to God for the gift of TIME with my husband and kids!!
I am Thankful for the life I have:)

As an FYI---Pulmonary Shunting----
A pulmonary shunt is a physiological condition which results when the alveoli of the lung are perfused with blood as normal, but ventilation (the supply of air) fails to supply the perfused region. In other words, the ventilation/perfusion ratio (the ratio of air reaching the alveoli to blood perfusing them) is zero.

A Picture journey of some of my TIMES !!!! 11/11/2009

2009-11-11T01:30:00.000-08:00

Pictures of the BOSS and his journey...it continues...TIME goes on!!!

(pictures are not all in the correct order...when I uploaded them I messed up ..sorry:(

I don't know how I did it...I actually got some good smiles,facial expressions....not bad considering he has had a rough time the last few days.....

The boss with ...that look...I think he's up to something!!

Hey what's this BLUE thing mom???? Is it my new friend....what shall we name him...???
how bout....how bout....Larry Blue...yes Larry Blue ...I like that!!!

Hey mom.....hey mom.....can you see my teeth?????

MR Blue eyes......

Hey ...you looken at me???
Yeah you......

Mom what do you think.... is this green trim look good with my eye color????

Okay so I can't sing right now.....
but I can still play a mean guitar...even on a bad day...NOT bad huh!!?!!?!

Okay enough already with the kisses dad!!! .....
just kidding...Avery was actually in the middle of seizing....
he wouldn't complain about daddy's kisses!!!

My Noddle girl...and her new slinky!!!

A little funny with the eyes...but still so cute:)

Hey MOM???? What ya doing????

Me and my friend Larry Blue take a little nappy.......

Okay MOM...what is this thing in my NECK?????
Can you please take care of this for me...like NOW????

Avery insisted on arching his neck far back as he could...and he was not happy when we would re-position him!!!

My Amazing older boys....Love this picture taken by my mom in law!!!

They look like they are posing for a commercial...very cool picture....this was takn at Patriot place(behind it)...Tyler,Andrew,Auntie Kim,Uncle Darryl & Devynn

Big brother ...being a big brother...what you don't know is Devynn is a great actress...

Ummm ...were you talking to us Noni????

Andrew looks like MR Cool in this picture.....and Tyler is ...well Tyler...goofy...
Devynn is as cute as can be!!

Auntie Kim And Uncle Darryl are ready for this one...but the kiddos ...not so sure..Devynn looks cold,Andrew well ..he's Andrew..Tyler probally wants to talk!!

Anyway looks like they had a good time..Thanks Noni....Auntie Kim & Uncle Darryl...

Okay ...THAT'S ALL FOR now...
THANKS FOR Sharing this journey of mine and this TIME with me and my family!!!!

God is good all the time and all the time God is good
..AMEN!!!!

November 10,2009

2009-11-10T18:00:00.000-08:00

Can time Go by so fast ...but yet stand so STILL???
I guess that question could be taken and answered in so many different ways...

Time in the hospital seems so slow at times....but before you know it ...you have started yet another week or another month...

Time when it comes to relationships....they all have a starting point.... and in time they grow and are nurtured...NO matter what kind of relationship they may be...working,family,spouses,friends,doctors,nurses,staff,God....(Not in that order of course)

Time when you look at your kids....it seems like just yesterday they were doing things for the first time ,like crawling,smiling,talking,reading,playing ball,taking a bus...ect ect...and NOW their teaching you a few things or two....or 10!!!!!!

^{Matthew--19:14} Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

Time when you have somewhere to be or something to do...we are all hard pressed for time and always seem to need more of it so we can fill it with more things and stuff to do with that time.....we are never satisfied with what we often have...until we no longer have it....is that true for time as well?!?....I would think possibly yes...you can decide for yourself!

I could go on and on......We all may look at time in our lives differently....BUT there is ONE thing for sure...TIME DOES not stand still ......it goes by...weather we want it to or not....What will you do with YOUR TIME!?!?!
These days I apparently have a lot of it(Time),but so little at the same time....however I have been able to reflect on many things ...one being time....

When it comes to God there is no such thing as times....because things are done perfectly in HIS timing in HIS way..he does not think about months end or a new weeks start....he is not hard pressed to get things done on a deadline or be somewhere at any specific time.....he doesn't get in the way of relationships....he wants to have a relationship with us.....he isn't hard pressed for time ,and doesn't make excuses....HE is the Almighty God, who is there at all times.....we just need to take ....."TIME "to know that....

An Avery Summery of some recent "Times"------Today is Nov 10th,2009

Avery has been in the ICU for 19 days.......a long 19 days I might add....During this time......Time certainly has not stood still, there have been moments (times--- I hoped they would)...
Avery was extubeateded the day after surgery on the 23rd of Oct,however he continued to have a hard time with his breathing....
At one point he was actually moved to his regular floor,but that lasted all of 4-5 hours and he was sent right back to the ICU.

Upon returning to the ICU Avery had been on a BI-Pap or C-Pap machine----a form of ventilation without intubeateing him.....this was to help him to not work so hard at breathing;it helped to a degree ,but he was still working hard;this went on for 10-12 days; he had a hard time weaning off this machine.
During this time he has been on antibiotics to treat a couple of infections in his lungs....neither of which would have caused the excessive work he had been doing with his breathing . Avery has been getting nutrition through his Port Catheter that has given him TPN--Total Parenteral Nutrition and Fat Lipids
Last week he received a blood transfusion....(Thank you ALL blood donors).Saturday night he has started on G-tube feeds for the first time since his Fundo was done...

A decision had been made to have a tracheotomy placed----which took place Friday Nov 6,2009;due to his new baseline of increased work of breathing

Regarding Avery's seizures--- up until the last few days prior to surgery (11/6)had been better.....but Saturday he had almost 400, and needed extra medication more than once,seizures continue to be ab issue,but meds are being ONCE again adjusted.

Saturday he came OFF the VENT...and we pray it will stay that way...he is getting O2 blown in his trach...we increased the O2 this afternoon again (11/10)

Since Saturday night and increasing Sunday;Avery has had a really tough time ...regarding his saturation's and showing signs of excessive pain...he has de-satted more than a 30 times just yesterday to the 60-70's(not good)and even to the 50's
and has been screaming in pain, what stinks is we can't hear his voice yet(due to the trach)..he also was turning a little coloring we'd rather not see while de-satting .....
Pain management is being addressed.......
I think his feeds have attributed to some of his pain;but I think he is just is allot of pain from all these procedures .....we are taking it one day at a time....or I should I say minute by minute....
His work of breathing is increased again ...even with the trach ....
He has had to be suctioned many times throughout the day & nights...
Prior to having surgery again last Friday Avery had been more interactive and responsive than he had been after his first surgery(10/23) ...For that we are very Thankful to God!!! We are praying we see more of this interaction & responses in the coming days!!!!

Psalm 62:8
"Trust in HIM at all Times, O people pour out your hearts to him, for God is our refuge"

Time for ....Some side NOTES-----

The kids were glad to see their brother ...whenever they come in:)
We got special permission for our kids to see Avery....For that we are also Thankful to God for that TIME together as a family!

Please PRAY FOR our KIDS....As this admission has been really hard on them...I think it's hard for ALL of them on their own level to really process and understand all that is happening....it can be a bit overwhelming for US as parents...imagine being a kid!
Please pray for my mom....she is not feeling well;apparently it is just a cold but I think it is taking it's toll,and she feels bad that she can't help out with the kids while being sick...She has been a huge help and I appreciate all she does!
Please pray for my brother Kevin who has been having some medical issues
Please pray for Joe & I ....as this life style of; hospital living..... is hard on both of us in different ways!
Please pray for my friend Kayleigh ,who will be having major surgery in the coming month or so....Pray for her Doctors & family as well!
Giving Thanks to God for all the prayers received,loving support,Family & Friends....along with help with our kids, & house hold stuff...meals have been also appreciated..... Thank you for giving of yourself and your TIME~!

I will post updated pictures soon......please bare with me!
Below are not the most recent pictures......

Devynn and her baby bro....

Avery receives a blood transfusion

Thank you GOD......for the blood donors!!!

Avery's mask.....

The tape was to protect his skin from that mask....
you can get real bad skin break down because of the forced pressure!!

My little Pilgrim boy.....who is not so happy.....but he is a strong Pilgrim boy!

Blood donations can always be made at your local Red Cross....be a donor today..there's no better Time!!!!

Big blue eyes.......he really hated that mask towards the end of time that he had to wear it!!

This and the other masks are for his Bi-pap...C-Pap vent he was on for almost 2 weeks time!!!

Strange eyes.......this is after his first surgery 10/23

Sleepy .....medicated.....

Big Bro

Big bro

Big Sis

All three big siblings....

And NO ...not Big mama.....Mom and her TY guy

Love the teddy

My man and my Boss......

My four miracles

My big Boys....who are practically men.....and we ask??????

Wasn't it just just yesterday Andrew was born...NO in fact he's almost 19yrs....Wasn't it just yesterday that Tyler was just starting to talk in the cutest little cartoon voice..NO...he will be 15 next month..WOW...
Wasn't it just yesterday that Devynn was talking with her friend Zac about their imaginary dog named Batovin...NO....That was like 7-8 years ago ..cause she will be double digits in a few weeks!!!

And wasn't it just yesterday that I told you all I was pregnant with OUR 4th child .....NO...Cause Avery will be 17 months old this month.....

Didn't I just bring Joe home to meet my mom and dad...NO that was over 20 years ago....and WE are going strong...Thanks TO GOD!!!!

As I update this post.... I sit and am reminded that tomorrow 11/11/2009 is the 17th anniversary of the death of my dad.....It seems like just yesterday in so many ways....but soooo long ago ALL at the same time!!!
I am so Thankful to God for the 20 years time I had with my dad...all the good all the bad.....the happy the sad.....God is good all the time!!!

SO...Where does the TIME go and what can we do to value,appreciate & enjoy each moment of that TIME??

I am so proud of my Kids that God gave me :)

I am truly Blessed with family, friends...and the TIME that God continues to give me each day to appreciate all things!~!!

So I ask you .....TIME....Can it stand still and go by so fast????

What do you think God would ask of you in the time you are here on Earth??

2009-11-10T14:42:00.000-08:00

Time.... Is a gift ......below is a glimpse of some Time in our lives !!!!!

Pictures posts.......They are not in the correct order.....
Some are before his Trach surgery and a few are after .....
Enjoy the pics...and a glimpse in some Times in our lives!!!

Avery and his daddy ...before his surgery Friday 11/6

Avery right after returning from his trach surgery
He was back from surgery in under 2 hours!

Close up.....of his new Trach AND his toothy....

This is Henrieta...The vent...Yes I named it..and I was glad to see her go,but so Thankful for her presence and the help she gave OUR Avery!!!

OUR ....Peaceful little Gift from God!

A different view....of his Trach!

Some of the OR Team.....heading Off to Surgery Friday 11/06/2009

Time with daddy before surgery and.... we took off all masks ..YAY

High Five daddy....Yes I can do this!!!!

*Taken right before surgery Friday*

We Love this guy....He has ONE of the best smiles evaaaaa!

Mom and her boy......never can get and give to much loven!

It was a blessing to have Joe there the night before surgery.....
This was taken right before going to surgery.......

Mom's attempt at self picture taking.....don't you love it....so much fun!!

and again.....taken on 11/6..the date is not always correct on my camera....sorry:(

The Boss.......his nose looks funny because he had that mask on for so long....

Don't worry his nose looks perfectly fine now....cute as can be....look at those...
BIG Blue eyes

beautiful boy.......he is a precious gift ...given to us at the perfect Time!!

loves the mama & the mamma loves him:)

and loves the daddy....and the daddy loves him:)

What a very cute face(s).......both of them!

Never enough kisses.....

really never......

and still have room for more kisses...

the kissen bandits....unmasked take 1

kissen bandits unmasked....(well one of them is)take 2

That One kissen bandit doesn't like her mask apparently....take 3..

Love seeing that little face with nothing on it:)

So cute.....

With Jen his hematologist....she's great!!

Avery is Unmasked briefly .....with MOM!

Love is in the house or the hospital!!!!

Smiles for big bro bro Tyler

OUR four Gifts.....FROM GOD!!!!

He loves that brother Tyler

Auntie Kim and Uncle Darryl come to see the boss...and give some loven!!!

Uncle Steve and Auntie Carrie ..also want in on that loven and come for a visit!!
Uncle got some good smiles from the Boss that day...Thank you God for the gift of Smiles and time with family!!!!

Devynn and Rachael our friend we met on 9 east..
she finally goes home after being in the hospital over 4-5 months....that I say is a long time!!!

Nurse Devynn doing her rounds.....in a timely fashion!!!!

and she's checking on her # 1 patient!!!!

Can you believe how young nurses are these days!!Taking vitals...she's good...

Making the boy happy...Making the Papa happy and the Sister!

Holding the boy after a long time of not getting to hold him..daddy was so happy!!!

My beautiful Girl!!!!

My grown up son...

My handsome TY guy

Tiggerrrrrrrrrrrr...
The wonderful thing about Tigerrrr is that Tigerrrr's a wonderful thing!!!!!!!

Mom and her Tiggerrrrrrrrrrr

I thought it was an appropriate Time for Avery to wear this since both Tyler and Devynn wore it when they were about his age.....he was a very cute Tggerrrrrrrrrrr!!!!!

The gift of capturing moments in TIME........The Gift comes from God alone!!!

Times can be good
Times can be bad
Times can be hard
Times can be glad

But Times in our lives...are times that God has given us.....Be thankful for all he has given you/me ...for in a moment that time will be gone!!!

May God bless you and keep you make his face to shine on you!

2009-11-02T19:05:00.000-08:00

The below information....
I was told by a nurse Friday that it was going to be implemented today....but evidently they are starting it tomorrow...

Visiting Children's During Flu Season

Dear patients and families,

Due to the increasing amount of flu (H1N1 influenza) circulating in Massachusetts, we are placing strict limitations on our patient visitor policy.

As of November 3:

Non-family members and patients' siblings under 18 will not be allowed to visit inpatients. Visits to inpatient areas will be restricted to parents, guardians, grandparents and siblings over 18.
Parents and guardians are strongly discouraged from bringing patients' siblings under 18 to outpatient appointments. Non-family members may no longer accompany families to these appointments unless they are caretakers.
These measures are vital to ensuring the health and safety of our patients, families and staff. We understand this may be challenging for your family. We ask that you please do your best to reduce the spread of flu by not bringing siblings or friends with you when you visit the hospital.
By complying with this policy, you are helping to ensure that the hospital can continue to offer you the best care possible. Please call Children's Center for Families at (617) 355-6279 with any questions.
Thank you for your support, and for choosing Children's Hospital Boston for your family's care.
Sorry for any inconvenience this may cause you.....we appreciate all your continued concern and care and have really enjoyed your visits!!!!

We will keep you posted if something changes.....Blessings,Grace & Joe

2009-10-24T15:20:00.000-07:00

Avery Post- op---

Mom and her boy....he's a trooper!!!

24 hours post- op......

It has been a little more than 24 hours since Avery's surgery's have been completed....

I have a hard time writing updates in the current situation we are in...ALL day it has been so touch and go...

Avery ...while still intubeated....

His night was not much different from my last post(Fri-Sat)
He had High Heart rates during the night... about 1 - 1/2 hours when they were a little lower...but we have not seen that since(the little bit lower part)
Expressing irritability at times(over night ...early morning)
His temp was still elevated(he has a fever)
He still had a few apnea episodes and remained on the ventilation machine
Pain and sedation meds were still given
Blood levels still low...they are still not ready to give a transfusion
He has fluid in his lung(s)...they will monitor
No more seizures over night(Fri-Sat)

Today....(Saturday)

Thank You God....We were able to take him off the ventilation machine....but it has been touch and go ALL day

Taken during the day yesterday ...after extubeation...HE remains very pale and PUFFY!!

He continues to get breathing supports of O2
He has been having a hard time keeping his SAT'S UP ...ALL day....since extubeation
Well.....I thought his heart rate was high last night....it was nothing last night and early this morning compared to the rest of today...his average HR was 168-190 today....
No big clustering of seizures during the day
He has clearly been in a lot of pain...we have been trying to balance pain meds and his respiratory status...if you give a large amount of pain meds,it can cause him to be a little more sedated,which then can cause him to not breath very well on his own...trying to find that balance
Tonight his blood levels remain very low....

Avery's eyes open for the first time since surgery...about 8:00PM ish
Saturday night!

OUR first smile since surgery...he only had a couple,but we were glad to have them!!

Seizures in the late evening had increased again....added seizure meds were given
Avery needed suctioning several times through out the day
Avery did not really rest very well at all today
Blood pressures have been from one extreme to another ....very high to very lower....numerous reasons why this could be,they have been watching it
Avery's new Port Catheter had started to be used Fri into Sat
Avery got his catheter removed, and continues to put out a lot of fluid

40-42 hours post -op
Saturday /Sunday

FYI----

Avery's baseline Heart rate is----90-120

Avery's baseline Respiratory rate is ----20-36

Avery rested slightly better over night(Sat-Sun)...better being he actually slept more than an hour.....
Avery had another large seizure clustering that required added dose of seizure medication
Avery stills is very junky and has been suctioned today
Avery's temp is still increased...they have increased meds to address the fevers
His Heart Rate remains high....Not in the 190's but still hanging in the 160's
Respiratory rate is very high and has been through the night
He has awoken several times with pain...and while awake has showed many signs of pain
I have requested the pain team to come by
He remains pale in coloring and in sill PUFFY from all the fluid
Still having de-sats.....and breathing hard at .....this 10:00 hour on Sunday...SO I gotta go...time to suction!

This was actually taken this morning(Sunday)...moments ago!!

NOT much else to say at his point we will continue to address all the above things mentioned...

***Thanks for the continued prayers/support***

"The Lord Bless you and keep you,the Lord make his face to shine upon you and be gracious to you"

2009-10-23T21:32:00.000-07:00

12:30 something AM update....

He has had a rather rough evening...with what appear to be a bit of PAIN.....
I'm not sure the pain meds are working the best...

Avery's blood count is very low.....

They are trying to identify where & if he is bleeding from somewhere....
He may need a transfusion tonight.....or they may try to hold off a little
He has had several apnea moments...where he kinda stops taking a breath,but the machine picks it up.....
AS an FYI----that does not mean he is 100% dependent on the ventilation machine ...it just means he is having some moments where he forgets to breath....there could be several reasons for the apnea periods...they are addressing it
They have upped the rate of the venting machine...to see how he does
Heart Rate has been really high....again there could be many reasons for that....some being the things I mentioned above...bleeding,temp...ect....
Temp very high

So basically....there is a lot going on...some could be ALL related to the surgery itself....and the intensity of what he went through.....

He has needed to be suctioned;something that does not thrill him....but is needed....this is not the deep suctioning he usually gets.....but enough that he's not to happy...

At this point the surgeon wants to check levels again in a couple hours....and if he continues to show any other signs of bleeding they will intervene.....

SO I am so glad that sleep is overrated...ha ha ha

So all the is to do now is...

Trusting the Lord with all my heart and leaning not on my own understanding...

To:Andrew ,Tyler & Devynn...Avery thanks you for the hugs and kisses:)

2009-10-23T15:54:00.000-07:00

Our little miracle boy!!!

Avery ...with daddy he is so glad to finally see him after ALL those hours!

Our little Boss...swollen around his mouth/face....which is expected!
He's a tough guy:)

Here's an update post- op....

We saw Avery in a timely manner after his a arrival to the ICU....we immediately noticed he was seizing...

Which surprised us all...he was then given an added dosage of seizure meds...

Avery is very sedated ...as we would expect...he had a lot going on today!

He is swollen,but that is also expected, in time this swelling will go down!

Praise God the surgery went well....

NOW we are praying for him to have a restful & painless night; along with an uneventful extubeation(when they take the breathing tube out )

Give thanks to the Lord for he is good his love endures forever!

Sending (((BIG HUGS & KISSES )))
To: Andrew,Tyler and Devynn...From:Your Little Bro...Avery:)
Lots of love too....

While in the ICU....I'm not sure visitors are a great idea....just please call us first,so we can tell you if it's a good time! Thank you all...God Bless!

2009-10-23T12:25:00.000-07:00

Last procedure is underway...

The Saliva Gland Clipping/Reduction---The DR started this procedure and Avery is doing well!!
We are hoping Avery's last surgery will be done about 5:00....
He has not needed any blood products...so that's good news!

Talk about a Long day....

"Cast your cares on the Lord and HE will sustain you--Psalm 55:22"

2009-10-23T11:23:00.000-07:00

Update on first 2 procedures from the DR.....

I guess it was actually difficult to get the Port Cath line in Avery...He tried 3 spots before be got one!

Avery has a lot of scare tissue....and he has a strange anatomy in regards to line placements!

His Port is accessed now..and I think they may be using it already(not real sure ...but from our conversation ...it's very possible)

He agreed that Avery was a difficult stick...So needless to say I am glad we decide on the line!

Avery had the Fundo done......which went fine.

I guess in the end he is technically having 4 procedures....they had to move his G-tube sight and made a new sight and closed up the old one...the other sight was placed to high!

Avery is doing well.....he has not lost a lot of blood!

It's now about 2:40 and the 3rd/4th procedure is just about to get started....keep the prayers coming!!!

"Look to the Lord for he is good his steadfast love endures forever"

2009-10-23T09:40:00.000-07:00

12:30 PM Avery Update....

Avery is doing well in surgery ....The DR is still working on the Fundo and he has about 1 more hour of this procedure!!!
The DR that has been doing the Port placement and the Fundo ...will come out to talk to Joe and I in a while....
So the third procedure won't be started for a while....

My soul finds rest in God alone....He is my rock and my Salvation;he is my fortress, I will never be shaken!Psalm 62:1-2

2009-10-23T08:10:00.000-07:00

11:10 AM ....Update....Avery is still in the OR

Little info.....about this morning>>>>>

We went down to pre-op at 6:30-6:45ish...Things moved rather smoothly down in pre-op!

He went into surgery about 7:45 -7:50

The anesthesia & intubeation went good....

As of our 9:30 update-- they were still working on the Port Cath placement

As of our 11:00 update-- they had just finished with the Port placement and that went in with no trouble...They had just started on the Fundo at 10:45....

Joe and I went for a walk....it was good to get some fresh air!!!

This is the day the Lord has made,let us rejoice and be glad in it!!!!

2009-10-23T05:00:00.000-07:00

Avery is in the OR NOW......

Ready to go down to the OR....we got a few smiles....God Is Good!!

Mommy and the boy......starting the morning early!

Avery had a ok night...some seizure activity prior to going to the OR...I think he enjoyed being snuggled with daddy....He was a bit cranky this am...but we managed to get some smiles!!!!

These surgeries will be ALL day....please keep him and our family in your prayers!

The Lord is our strength.....

The Plan....

2009-10-22T05:54:00.000-07:00

Finally...HERE it is...

I have attempted to write on this blog more times than I care to count...thanks for ALL your patience!!!

Information......About OUR BIG team meeting & decisions that have been made!!!

YOU have been waiting so patiently :)

Avery is almost 16 months old...Praise God...for whom ALL blessings flow!

Pay no attention to the date on the above picture...this was taken in Sept!
Avery and one of his biggest fans..Devynn!!

AVERY and AMY...ONE of our home nurses comes for visits...HE loves her..and she is wearing one of his favorite colors....

Mom and the BOSS...Singing...Amazing Grace!!!

We have appreciated ALL the prayers ....especially recently for us during our BIG team meeting and decision making time; we know you are really concerned and wondering how it ALL went....

First of all I want to mention, that Joe and have talked to the kids... Devynn, Tyler & Andrew(limited information for Andrew) about some of what's happening with their little brother, and what will be taking place tomorrow.

Below is some of the Questions and Answers regarding our team meeting and conversations following, along with the decisions that have been made.......

Because of Avery’s complex medical care….there is not really any right or wrong answers when making many of the decisions that Joe and I faced and will likely continue to face…..

Q-How is Avery functioning Neurologically wise; due to the impact of his Bi-lateral strokes & what does the medical team expect; in regards to development/progression ..ect
A- Avery's ability to respond to likes and dislikes is something he can do, however he is not able to build on prior experiences and will likely not be able to; basically we are Blessed to have a child who can smile and laugh when he does smile and laugh...Having him be able to learn and grasp new things is something they expect him NOT to be able to do; that tells us that HE will always be completely dependent on us for everything..(which is okay ...and we really already knew that) Over the last 3-6-and 9 months Avery's development has been going in the wrong direction---Avery's recent respiratory issues(recent--being the last 6 months)are basically caused by Avery's inability to control his secretions, which are caused by his low tone and poor muscle strength Avery's hypotonia(low tone, reduced muscle strength)is caused by a few different things.
*Brain damage---the area in the brain that controls your muscles ---is damaged
*Side effect from medication---is LOW tone, and often sedation (which in return will make someone’s tone low, if your muscles are relaxed from the medication)
*Complex Epilepsy---Uncontrolled seizures, also impact Avery's LOW muscle tone!

Q-How can we keep Avery safe--and protect his airway--
A-To say it plainly----we are NOT sure there is anything we can do for Avery that will ultimately protect his airway....NOR can we guarantee that there will be anything that makes his hospitalizations less, NOR can we say that it will make his life here on earth any longer than it will be...With that being said....

There were several doctors at this meeting, all shared their medical knowledge and medical experiences with us, the information shared and the discussions that were had....followed by allot of prayer is what helped Joe and I come to the decisions we did.

"Trust in the Lord with ALL your heart and lean not on your own understanding"

Due to the severity of Avery's brain damage; and having been able to watch Avery over this past year and seeing the grate affects these strokes have had on him, the doctors do not expect that Avery will have a long life…

Someone recently told me that …ALL of our lives …Have a beginning, middle and end!
“It’s what we do in the middle that counts” ...
~So here we are in the Middle!!! Making it count!!!~

Joe and I both can respect and appreciate the doctors and their medical knowledge, but we know that the doctors are not God…. And that "HE" ultimately is in control of and knows the length of Avery’s life….

Having the above information has helped in the decision making process...May I add the very difficult decision making process.

When making these decisions…our goal has been to look at quality of life and what that might mean for OUR family and for AVERY… ALL of our decisions were not taken lightly and had been prayed about.

“In God, whose word I praise, in God I have put my trust; I shall not be afraid. What can mere man do to me? “

OUR GOALS….

To have Avery safely at home as much as possible
To have Avery be interactive with his siblings, family & friends---
TO SEE Avery’s SMILING FACE
To have him less sedated than we have seen him

“The Lords people may suffer a lot, but he will always bring them safely through-Psalms 34:19 “

Friday morning Avery will be having surgery; this surgery will include three procedures.

Fundoplication--- This can help with Avery’s reflux/secretions from below (in his stomach) and a way to also help protect his airway.

Saliva Gland Clipping---This can help with Avery’s secretions from above (coming from his own mouth) and a way to help protect his airway.

Implanted Port Catheter (Similar to the Broviac Central line he had shortly after he was born)—This will allow Avery to be accessed for labs, medications (when needed)

We have prayed that ANY decisions made, are guided by God and that they are ONES that
God has planned for Avery and OUR FAMILY....not ones that we would like to have for our family....***because what we want and what GOD plans may be two different things!!

Below is a portion of an e-mail Joe received shortly after we had made these decisions…
This e-mail is talking about the man who wrote the song “It is well with my soul”

During this time, God can begin to transform our reliance on physical things to things of the spirit. He wants us to learn to walk by faith, not by our senses, our feelings or our understanding. God wants to teach us how to detach ourselves from all physical, emotional and spiritual supports, so that we will be able to respond with "Not my will, but Thine.

“When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.”

Singing duet.....SINGING''IT IS WELL, IT IS WELL WITH MY SOUL WITH MY SOUL"
Okay maybe it wasn't that song that they were singing....but they take requests ...and would certainly sing this song!!

AS an FYI----Uncle Kevin always sings to Avery...and Avery LOVES to sing with Kevin ...It's a joyful noise!!

On a side note....Avery got his ...ohh I don't know 9-10th IV this morning and will be receiving Thrombate..in preparation for his surgery in the AM!!

BUSY day today...pack up our room....Sign consent forms and get the last minute details for tomorrow!

Also....We will be in the ICU after surgery,so if you want to visit it might be better when we are back on the floor....however,you can always call me to see if it is a good time.....

Avery will be intubeated(sp?) for 24 hours after surgery...so please pray the extubeation(sp?) goes well,as well as the surgeries themselves!

I celebrated my 37th Birthday-- HERE at the resort on Monday...my hubby got me a mini laptop..Thank you Honey..LOVE IT!!

Thank you to all who sent me Birthday wishes,prayers,cards and gifts.......It was very kind of you ALL!!
I have been truly blessed!!!
Thank you to my brother for my Birthday dinner and all that you have done:)

My kids all did something special for me...thank you Andrew Tyler,Devynn & Avery:)

On another side note.....I am working really hard at making good food choices/exercise and working to loose this weight that apparently seems to have made it's home nicely on my body...pray that I can continue on this path and be healthy....

"Our help is in the name of the Lord,who made heaven and earth---Psalm 124:8"

***It's A Walk by Faith....NOT by sight***

PS...more pictures to come soon.....

2009-10-15T20:25:00.000-07:00

FUN...Picture POST...some taken tonight ...
some taken August/Sept/Oct!!!
Some of the dates are not accurate!!!

Everyone's wearing these...you gotta try it!!!!!!!

Almost Birthday buds...her's is the day before mine:)

Me and my bro....

Joe's Birthday bud.....I think he's a little older!!!

Gone fishing call me later......

Like my new DOOOO????

My Ty guy.....

My Birthday cake...Andrew's class and he made:)

Loven....

OUR boy with daddy....just moments ago!!!

My attempt at taking pictures of all of us!!

THE BOSS.....and his daddy....I wonder who is gonna watch who tonight!!!

Music with Joanna....this week!

The boss and his biggest smile...

Avery and MR elephant!

Here I am again attempting to take picture of us all...I call this the we have our EYE on you!!

Avery with his auntie Carrie....big smiles:)

It's good to have a friend to hold on to!!!

Andrew loves his littlest brother....

My birthday....US ALL together .....

And again ...with grandama...Uncle Ken was taking the picture:)

Devynn and her bro bro tonight before she went home....LOTS of love there!

Avery and his friends!

A kiss for you.....

2 of my boys...

Biggest smile for his mammal:)

More music....love music time!

Never enough love...never enough kisses!

BIG mouth big smiles....

2 of My boys...and MY man...on his birthday!

Grandma...loves her grandson!

My 2 youngest.....so cute!!!

Avery with one of our home nurses.....he loves to give Jodi big smiles!!!

Like father ...like son~!

More music again......you notice Avery loves music:)

Avery with one of his primary nurse at the hospital....HE just loves the nurses!

The boss....in his orange......

Kisses all around....

ALL my wonderful kids....

MY handsome brother....

The boss on a walk....look at that face!!!!!!!!!!!!!

2 of my favorite people....

Avery and one of his great nurses.....

Devynn and her little friend Eithene.....

He had a bath,was weighed and had Nebulizer treatments ALL while still asleep....

Alseep ...while being weighed...how cute!

Look at that face.....Gotta love it!!!!

On My hubby Joe's---(Dad's) 40th Birthday.....3 of his 4 kids!!!
Boy do they love their dad:)

My mom in law with her oldest Son....on his 40th Birthday!

OUT for a walk.....

A mad boy working on head/neck control.....with Rachel his PT!!

A happy boy......

Never DULL moments at our house or in our family!!!

The boss playing with one our our great home nurses Marie:)

Tracey.....OUR NP...Avery loves her:)

Jen speech therapist.....Avery enjoys her!!!

Shannon...ONE of our awesome nurses:)

Dr.Sapp.....ONE of our great attending DR's!

The girls on there day out to the ballet!!!

Praise GOD for WHOM all blessings flow......

2009-10-12T18:52:00.000-07:00

BIG Meeting TODAY....

The last couple of days Joe and I have had a little bit of time alone without the kids;so we could do some talking.........I think we are both looking forward to the BIG meeting today..
Or rather ...We are more wanting the information given and questions answered!

I have my list of questions/concerns and am ready to roll TODAY....the meeting is in the afternoon....SO if you could just keep us in your prayers today.......For guidance,wisdom and for GODS Understanding through it ALL!!

As an FYI---Joe and I will likely not be posting much in regards to decisions until we have processed all the information and have decided on what it is GOD really would have us do...After some decisions are decided on; we NEED to have some conversation with our OTHER kids....
Whatever it is that GOD would have us do will affect OUR whole family.....Prayers for our kids is always greatly appreciated!

New medication has been started for his seizures;and we are NOW doing research on the Keto diet,in hopes to be able to start that in the near future
Apparently there are a rare few people that can not metabolize Depakote and Avery happens to be one of them (surprise surprise)...
With that be said we are weaning off Depakote...
Avery remains pretty sedated at times,I think due to medication and seizure activity
He has been irritable/unconformable...with bouts of crying---not real sure of the cause; I have seen more bouts of crying at night(it seems like after his new med has been given)
Recent news----he has been having blood in his stool...NOT sure at this time what the reason is for that.....

That's ALL I got for now....thanks again:)

The Lord says"I will guide you the best pathway for your life.I will advise you and watch over you."--Ps.328

2009-10-09T20:56:00.000-07:00

Not Much of an update....but IT'S something!

I have NOT forgotten that WE have a bunch of prayer warriors out there...wondering what is going on...We really appreciate all your thoughts/concerns and most importantly those prayers!!

Over the last couple of weeks there has been allot going on.....I will skim over a few things!!

Please understand that we are not trying to be cold or insensitive to those of you who really want MORE details....There are several things Joe and I are praying about and do not want to get into until we have decided one way or another about some of our decisions......
We thank you in advance for your prayers,love,support,caring and concern:)

Respiratory wise-Avery continues to have increased respiratory rates and is obviously working hard at breathing,he remains on O2 and ALL of the same breathing treatments
Seizures-they have actually increased,and we have determined that he really is not metabolizing the Depaokote and therefore that medication has failed to work for him.
We are considering ONE more medication,as we talk with the team about starting the Keto Diet(a specialized diet for people with Epilepsy)
A sleep study determined that he has"Grossly abnormal sleep".....like I didn't know that...ha ha...and he has some central apnea episodes,he did not desaturate (likely due to his O2 being on)
Avery has had 7 IV so far in this admission.....discussions about WHAT central line to have placed is one of the things on the agenda for our team meeting on Tuesday
Surgeries....We had been consulting with them,regarding a few things for Avery,at there request we attempted to have a particular study done to determine,which surgery would be appropriate for Avery....Unfortunately we were unable complete the study; as Avery did NOT respond well to the procedure....and we therefore will not be moving forward with obtaining that particular information and now will have to come to some decisions without that information
I continue to meet with the PACT team and have found them to be a very helpful team of doctors with us at this time.....
We are having a BIG team meeting on Tuesday with the following teams
Hematology,Neurology,Pulmonary, CCS,Epilepsy,GI,PACT....to name a few...
We will be discussing some of the following issues..

Avery's line access and what is the best kind of central line for him;and how we will be able to keep the line from clotting
How Avery's strokes have impacted his life and what the medical team thinks we can expect;in regards to development/progression ..ect
How can we keep Avery safe, and protect his airway--is specific surgeries appropriate for Avery;such as a fundoplication(which can help with reflux and a way to also help protect his airway) and or a tracheostomy(a way to suction him efficiently and also keep his airway open )
What are realistic expectations for Avery, how can or should we continue to give him the best quality of life; one that includes ...the least amount of hospitalizations.....
How can we give Avery good nutrition that will help him grow

Those are a few things that will be discussed at our Tuesdays meeting.....

Please...Continue to keep us in your prayers....Especially Tuesday:)

"I know the plans I have for you says the LORD"

We are praying that ANY decisions that are made, are guided by God and that they are ONES that GOD has planned for Avery and our family...not ones that we would like to have for our family....because what we want and what GOD plans may be two different things!!

On a side note:Today---Devynn and I ...along with my niece and sister in law are attending the Boston Ballet....I am looking forward to some time with my daughter,niece Bell and Carrie:)

Tyler had a MRI this week....he did a great job and the MRI was totally normal:)
The reason for the MRI was to see if he ever had a stroke that we didn't know about...due to the fact that we had 2 other boys that have had significant strokes!!

School is well underway.......and even though I am here;the kids are dong great;I correct and get curriculum things ready and address anything that needs addressing ...I am so very proud of them:)

Andrew is now working 3 days while at school; and he loves working in the kitchen the best!

Joe is doing well.....holding things together and coming here each day...I am truly blessed...he is a dedicated,loving and hard working husband!

I am so thankful for all the helpers along the way...Thank you...you know who you are:)

On a funny note:
I was embarrassed to find out that I apparently talk in my sleep......I was saying something like
" The bags over there or the bags hanging up"....
who knows....it is kinda funny....

I now feel the need to write something and hang it on the door ....
That says "Please excuse the mumbling mom while she sleeps"...I guess that's what 15 months of sleep deprivation does to you...ha ha ha

2009-09-28T08:18:00.000-07:00

Little updates....are better than NO updates...I suppose...right??!!

We finally got the forth IV in at about 1:45 am .....Thank you NICU nurses...Thank You GOD!!!
Avery was up on and on during the night
Very spacey/lethargic ALL morning
Not really very interactive today as he has been the last couple of days
WE tried the coughilator(sp?) with respiratory therapy this morning---a machine that helps produce a good cough ;to help him get those secretions up with out LOTS of suctioning,not sure yet if think it will be effective for him
Respiratory wise....doing allot retracting/pulling(basically struggling)working hard at breathing.....Repository rate has been more consistently higher today
Sounds more junky today,and had chest PT and suctioning....and still sounds yucky
Labs that were drawn during the course of trying to place an IV yesterday/today at 2:00 am....showed that one of his levels(CO2) was really low,but could be caused from one of his medications(but this is really low for him)
We will be starting a new medication to offset that low level and also get more lab values tomorrow
A Team meeting was supposed(still may ;not sure)to happen tomorrow;but now it is thought to wait on some of these tests to come back,before meeting....I also hope that when ever this meeting happens it will include ALL the important team players....
Working to aggressively increase feeds today,even though he will probably not respond well to this,the reasoning behind it; is that he needs to be at least up to full volume prior to the test tomorrow,or they may reschedule it for the end of the week and that will set everything else back...UGH....
We have switched temporarily to a blow by o2(it looks like a big shovel mask and is not necessarily attached to his face it sits on his chest ) ,also due to this test coming up tomorrow,they would rather not have the nasal cannula(o2 nostril tubing)
We are waiting to go down for a test.....hopefully it will give helpful information
I am waiting to see if Avery's neurologistt gets back to me today or SOON.....
Avery's coloring is very pale today.....hummmm....not real sure why,but I have mentioned these changes ...for documentation Purposes OF COURSE....
Surgery came in this morning ,but I was not particularly coherent AT 5:00 AM AFTER BEING UP UNTIL 2:30 AM...So I imagine they will be back later...although it's not like they have anything to say to me,because we are waiting for Avery's test to be done along with the results....

ON some side notes:

I will be doing school work with the kids here at the hospital in the evenings and YES they have things they will be doing STILL at home during the day;although ONE on ONE teaching is needed in some areas ....since we are not sure of the length of this stay,I need to do this ...so prayers that we can accomplish what needs to be accomplished would be great!!!

"Wherever God's finger points,HIS hand will clear the way" .....
a quote from my daily devotional

2009-09-27T16:49:00.000-07:00

Just a real brief update.....

We went up on Avery's feeds a little this afternoon;but I realized a couple hours later that for some ODD reason the feeding wasn't attached to Avery...DAH
He is NOT handling the increase very well....but WE need to continue to work on this
Some pretty high respiration's throughout the day and some hard work with his breathing
Surgery came by and we discussed one of the tests they want done prior to moving forward with surgery plans
Avery lost his third IV today....and he needs access, his antibiotic is in IV form & he needs to be kept hydrated since his feedings are not giving him nearly enough at this time
Avery's seizures are not great today....some tonic/clonic
He has been really spacey and kinda out of it this evening

Please pray for access tonight....

Please pray for ALL the CCS family's on OUR floor...it's pretty busy here at the "Fall Resort"

"The Lord your God is with you he is mighty to save"Zeph 3:17

2009-09-20T15:52:00.000-07:00

Is comforted that I know God is in control.....praying for wisdom and guidance about what he would have us do!!

After being home about ONE month from our stay at the Summer "Resort"...
We are a little sad to report that we are now residing once again ....at the "Fall Resort"
We we had our Epilepsy visit over a week ago & we increased Avery's Depakote.....he seemed pretty sedated and had pretty crazy vitals...with respiration's consistently in the 50-60(which is high for him)...and has also had some wacky heart rates, from 60's @ times to as high as 160's at times.....both on the very low and very high ends.....his temp however had been rather low for him....

We were not real sure what may have been causing these irregularity's...

As the week went on so did Avery's sedation and respiratory rate....

We decided not to increase his seizure meds again ;as per the schedule to increase,due to the sedation we had been observing ....in fact;Avery's seizures had increased and we actually gave emergency medication the beginning of this week.

Avery continued to show signs of discomfort;weather it is from the pain he experiences with his feeding/medications----or just general neropathic pain. He had been putting out large volumes of green bile,which in my mind is an indication that he is having some motility issues....(things are not moving along and emptying properly from his gut/stomach).

His PH levels have been low.....acid in the stomach;which means when he reflexes it probably is very uncomfortable!

Since he has been sedated his interaction with others has not been great;it takes a little more effort to get ANY response from him....When he is in the mood he responds well & still really enjoys music!!
Some of Avery's favorites still are his siblings and those close to him:)

Avery continues to have trouble sleeping/resting very well.....he has never been able to be on any kind of schedule no matter how hard we work for that....Between his seizures,reflux,pain,meds...ect..ect....this is a goal we hope at some point to achieve.

We were suppose to see Pulmonary last week; but due to other issues that came up we were not able to go....and I was waiting for another appointment (Neurology)that was canceled to be rescheduled before I rescheduled our Pulmonary appointment(.....UHG...did you get all that PHEW)...Anyway...
I was encouraged by one of my home nurses(Thank you) to have Avery seen by Pulmonary sooner; rather than later....so needless to say we(Devynn, Amy-OUR- nurse and I ) brought Avery in Thursday 9/24...to be seen and evaluated by the Pulmonary.....regarding his most recent change in respiratory status...mainly his increased RR rate!

My hope in bringing in Avery was to have them access him and tell us if we should continue with ALL the breathing treatments we have been administering.I had also wanted to know what their thoughts were regarding why HIS respiratory status has drastically changed most recently.Guidelines about the usage of the O2.....along with many other concerns & thoughts were ALL things that I just thought would be addressed with possibly a new treatment plan in mind...ect...ect....

"I know the plans...I have for you say's the LORD "

I am comforted by that above verse....God knows the plan's he has for Avery....and ALL Avery's family.... although that brings me comfort; it doesn't always prepare me for the words spoken to me below....

I really didn't expect the doctor to come in and say ...."I really think Avery NEEDS to be admitted "....

So after approximately 15 hours(9 1/2 in the ER) of being at the hospital for what was a routine visit.....We finally made it up to OUR home away from home floor 9east the CCS floor....

Something I used to always say was "Expect the unexpected through and by Christ"
I had a wonderful experience a few years back....
It was with Andrew...we never expected that he would be able to stay at the over night Christian camp in NH.... seriously ....I never in a Million years thought it would happen.....I had a close friend of mine remind me one day; that Andrew is in God's hands;and that he would be okay...So picked up my chin....and said alright....I guess we'll see what happens...
It was mid week and I was on one of my morning walks around the lake ;having a conversation with God(something I Loved to do)...and I ALL of a sudden realized....Andrew stayed overnight at camp ...a few nights...Andrew whom I NEVER would have expected to stay anywhere (For many many reasons)...stayed at camp overnight....and on top of it ....he was doing better than okay ..he was doing Great:) It was at that very moment that I knew to ALWAYS"Expect the Unexpected through and BY Christ" ....YES I know this above experience about Andrew is far different fr0m the one about Avery...
BUT....you know what in the way God thinks ...it really isn't.....

Avery is in GOD'S Hands ...We may not expect things in our lives;What God expects is for us to rely on HIM.Avery will be okay;just like Andrew was(and is)...it just may not be the kind of okay we would expect....So ....I just have to sit back and "Expect the Unexpected"......

"Trust in the LORD with ALL your heart and lean not on your own understanding ;in all your ways acknowledge him""

I can pray for certain things about my child or children ....but what God wants is for us to FULLY rely on HIM and know that; whatever is in HIS WILL ...we can expect HIM to guide us and bring us through, if we lean on HIS understanding....

Since being admitted on Thursday several things have happened....

Avery has had 3 IV'S placed...the last one being about 12:30 this AM.....
Avery's feeds had stopped Thursday night......and he has been receiving IV fluids
Avery is being treated for Aspiration Phenomena(again)
Avery's seizure medications are once again being adjusted(actually back to what they were prior to the last increase)...no emergency medication has not been needed,and we hope to keep it that way!
Avery's feeds have restarted yesterday(Saturday)...which is causing him extreme discomfort along with reflux;we have not increased his pain meds ;as of yet,but have been giving Tylenol
Avery had some bright red blood in his G-tube last night.....I would be merely speculating if I comments on what I think it means...so I'll wait and hear what the DR says!
Avery's o2 had been turned up slightly
Avery needed back to back nebulizer treatments on Friday
Avery's respiration's continue to be on the high side,in regards to his respiratory rate and his breathing, he is having more moments of comfort than when we came in on Thursday
Yesterday Avery did not seem as sedated as he had been
Avery has been very irritable

The Plan....

Surgery team is being consulted about a few possible in the very near future surgeries; and what may need to be considered in the more distant future for surgery.
Having a test to measure the amount of reflux,should help ALL of us with some of the decisions that need to be made
Keeping Avery from further Aspirations is A BIG part of the continuous discussions we are having,and team meeting...with ALL the teams to discuss a plan in moving forward
Working his feeds up this week,while discussing the next steps is part of the plan
Continue with breathing treatments and chest PT to help with his comfort

Prayers for OUR family would be appreciated......

"I know the plans...I have for you Say's the LORD "

Some side notes.....
AVERY is 15 months old today and officially a Toddler...WOW!!

OUR friends The Hilliard's remain inpatient;and are dealing with many things...your continued prayers for them are also appreciated....

It is comforting to have Jessica(Eithene's mom) here to chat with,vent with, pray with.....
http://www.fromthebanksofjordan.blogspot.com/

2009-09-16T22:59:00.001-07:00

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!