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......

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

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..

1. 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
2. How Avery's strokes have impacted his life and what the medical team thinks we can expect;in regards to development/progression ..ect
   
3. 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 )
   
4. 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.....
5. 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