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