"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.