Well it was nice to be home for Joe's Birthday...but unfortunately we will be spending our anniversary, which is on Monday, here at the resort....

We were all happy to be home to celebrate Joe's 40th Birthday.....Andrew & Tyler made Dad a cake and then Devynn made him one as well....which was perfect because one said 4 ---one said 0.....It was a nice day, thanks to all who sent cards and kind words to Joe; He really appreciated it

We had been home for a little over a week ....
We had a lot of re-adjusting.... labeling (that is organizing ALL Avery's things and anything else in my way I could label) along with many long days and long nights....

In regards to Avery's respiratory status he had still been on continuous o2 ...but had been stable.....overall with the o2, he had been doing better maintaining his saturation levels, although he had some lower levels and some de-sats, but mostly during suctioning or intense seizure activity..... suctioning daily also had continued, some days more than others ...We were taking it day by day!

Prior to coming home last week the seizures started to change some, but we had thought maybe it was due to adjusting his new seizure med....at least we hoped that was it.

Last Weds evening Avery experienced his first Grand Mal seizures. The following day we once again increased his new med, although he did not have any more grand mals in the immediate days to follow, we did however see a lot of mixed and new and I would say very odd and different, rather intense, seizure activity.

Monday we had a visit to the GI, and on the way, had an unfortunate incident where the G/J tube was dislodged while he was placed in his car seat. It was an accident and I was glad that we already had an appointment in town. He was seen in IR (Interventional Radiology) very early in the morning and still made it to his GI appointment on time. His motility med was increased, we talked about consults with different teams so it was a productive but tiring day. He had many seizures that afternoon. NO surprise there!

In the days to follow his seizures & mood had not been great, he was sleeping more and irritable when awake. Along with seizures, he had needed a little more suctioning the last few days this week and his heart rate was often higher than it had been!

Tuesday we had yet another day of seizure activity that was bothersome. I spoke to epilepsy Weds and we had decided to increasing the new (Vigabatrin) med ONE MORE time. It was either that or try another medication (Depakote) that we were advised was not a good idea in our last admission. The third option was to be admitted to the hospital.....that had NO appeal to me whatsoever. We also talked about giving emergency medication (something I had hoped never to have to do) but needed to feel comfortable with knowing what to do if an emergency arrived!

Weds, Avery continued to sleep on and off and have irritability, which he had been doing recently and we suspected it was due to his med increase, or seizure increase or both. Although we had a nice period of time Thursday, where he was nice and happy, but it didn't last. He was happy to see Lucie, from vision, and Amy, his nurse, had worn her bright red scrubs that he likes!

On Thursday evening .....Avery's seizures became very intense, to the point that I had to administer Di-stat (emergency medication) and then had to call 911....which earned us an ambulance trip and admission to Children's Hospital (aka...the resort)

Due to the reason for the admission he was placed on the neurology floor and not our home floor.....oh well, not much we can do about that...he was where God wanted him to be....and we have had many visits from our 9 East staff which is very comforting....although I'm wondering if they're visiting Avery or the candy dish....ha ha ha....just kidding!

He had a very tough night that night and into the morning. He had more Grand Mal seizures and they had to administer two different emergency medications 4 times. He was seizing for almost 2 hours...

We had many, many nurses and docs involved and he was closely monitored, discussions were had and a team from the ICU even came up.....his o2 was also increased during that time.

Since yesterday morning's episode they have started him on that medication I mentioned in the beginning ..the one that we were advised not to give..... this was done so with both Joe and my understanding....it's actually the medication Andrew has been on for 14 years....it's just not one they like to use with Children under 2-3years ...but at this point the benefit of this medication perhaps outweigh the risks of giving it and it clearly looks like his seizures have changed...and not for the better....

Yesterday he was pretty medicated, however he didn't really have any restful sleep....which can be attributed to the ativan, and another rescue med was given. He has been very, very irritable.


**Ativan is a benzodiazepine drug with short to medium duration of action. It has all five intrinsic benzodiazepine effects: anxiolytic, amnesic, sedative/hypnotic, anticonvulsant and muscle relaxan .

He has still had more than enough seizure activity, but not grand mal...the plan at this point is to decrease and ween him off of his Vigabatrin and hope that Depakote has an impact in a positive way and not the negative side effects. They also increased one of his other seizure meds temporally. Having him closely monitored here and then transitioned to our CCS team and floor is the plan....for now he is on the epilepsy service. His vitals are all out of whack...so watching those are also very important!

Our room moved yesterday, to be in front of the nurses desk.....

It is not a coincidence that my scripture verse today is....

"We must go through hardships to enter the kingdom of God; Acts 14:22"

You must make sure you don't interpret that to mean that going through hardships to enter God's Kingdom is what happens...Going to God's Kingdom....well that happens when you except Christ as your Lord and Savior... I understand the above verse to mean that often times the sweetest joys of life come from our pain, sorrow and hardships...all bad can be turned to good for those who love the Lord!

My hope in this recent hospital stay is that this hardship (in our case Avery's medical status) can be used for God's Glory and that we may get a better understanding of what would be best for Avery......

Prayers for strength and peace and an understanding of what God's WILL is for our child are always welcomed and appreciated.....


On another note....I don't believe in superstitions like knocking on wood or in the this case saying someones name and then that person is suddenly seen...

As many of you know I have made good friends with another parent that frequents "The Resort" with us.....and our last extended stay they came in the day after us and went home the same day (how funny)...well as much I am thrilled to have a Sister in Christ here; for us to give each other support....I'm bummed because that means her daughter is sick enough to be here... Anyway, we came in on Thursday and I found out this morning that they are about 10 doors down from us....

God knows what we need when we and it....and a Friend is a good thing to have been given from God!! Please pray for Eithene and her family. http://www.fromthebanksofjordan.blogspot.com/

We will continue to Walk by Faith and not by what we see....as God sees and knows ....ALL!!

Home...Hoping to stay..

We came home last night!

The last couple days he has been so so happy,and his seizures seemed slightly better... but today it has been a little rougher...during the day he was okay ... but things changed today....Avery started with a new seizure 12 am yesterday(prior to coming home) and also experienced it again during the day today.......more so this evening; actually much more so , more intense and more disturbing to watch ....He had more than ONE grand mal seizure today ...both causing his Saturation levels to drop significantly ....the second episode, lasted a few minutes long...he has never experienced seizures were they completely wiped him out like this and having SATS drop that low, I upped his o2 for a little while....and have since brought it back down....He is still pretty wiped out.....and is asleep!

This is SO not a good thing......Please keep Avery in your prayers!

May God protect him and keep him safe!

ME and some of my people......ALL Blessings in my life!




ME....out in the garden with my mom!




That's my mom...she's the bestest mom ever:)
Ohh and look we are color coordinated.....


Me....just chillen!



This is ....by far ONE of the BEST doctors EVER....and the doctor my mom talks about all the time...this is Dr.LaMouse-Smith(my GI DR)



See...I am soooooooooo happy to see one of my favorite nurses Mirelle!And...I think she's happy to see me:)


This is Dijitta....also known to many; as my wife.....I know I'm young but she can't seem to stay away.... Seriously...she is so funny and jokes with my parents and says they are her in-laws...it's kinda cute.....I'm thinking about breaking it to her....that HELLO...I'm still in diapers here!!!!

Anyway....I apparently make her day with my smiles.....hey all in a days work here at this resort! ha ha ha

God has allowed me to be used in ways many us don't know, but I am so thankful for the life I have been given .....Are you thankful with your life(even if it is not what you would have chosen) & in what ways is GOD calling you to be used??

Think about.......and thanks for praying for me and my family....Avery(written with help from my mom)

I'm coming HOME....that's the plan!

With 7 Medications (7 times a day)... & Nebulizrs(10-12 a day) treatments.....
O2 & suctioning....We are sure to be kept busy....but none the less...we are COMING HOME!!!
Amen...and just in time for daddy's 4oth Birthday...YAY!!!!

Avery started on medication to help with the nerve pain he has and I really think it has made a HUGE difference.....We had also increased his seizure medication(which he is still having frequently...but slightly better) ...his feeds are increased to almost were they were prior to coming back here.....He is on many breathing treatments as well.

The question to me has been ...."what is it that has made this change in Avery"....
When I say change...I mean, very interactive,attentive, and ohhh SO Happy....I believe the medications have certainly ALL helped....BUT....Prayer is a powerful thing...and OUR GOD is A Mighty GOD...who can do anything...Is Avery free of his challenges ...NO.....but can God use him to bring him GLORY ...Absolutely and he has ...AMEN!!!

Joe and I.....Still loving him,after 20years!


OUR day..... on SUNDAY!!!





We have had an amazing weekend with "The BOSS" For in all our trials GOD is there....in all of joys GOD is there..... We are THANKFUL for ALL that GOD has been doing with Avery & OUR family!!!!




Our family arrives....I couldn't understand why they didn't hear me knocking on my window (from 9 floor up)....ha ha ha




There they are...still not looking up.....


And again.....HELLO...HELLO....Look up here....see me?!?!



Ohh there they are....it took a minute for them to notice me...


My boys together again....



How can you NOT love those faces.....it's just not possible!




Love is in the HOUSE...and the house is packed!!!



What a gift....FAMILY!



Tyler LOVESSSSSSSSSSS his baby brother and it shows!!



The four of them.....

Outside in the garden....with ALL of my kids ...what a wonderful day:)



The Austin's are in The City!!


We look forward to Avery being in his new seat....he is in his demo ,in these pictures!


The look on his face says it ALL......he has been this happy for the past couple days! He is pictured with ONE of our great nurses Amanda!


Tyler hasn't held his brother in a LONG time.....
and it looks like they are both pretty happy about it!!
Andrew was enjoying making his brother smile & laugh....another great gift!


Devynn....our beautiful rose in the family!





Mom and her youngest BOYS....having a little dance!


Little miss 3 year old.....

More...pictures posts!




I see a Child of God!


My beautiful Princess!




The Boss and his scrubs....



Just me and my dad:)



A father's love.....a son's touch.....



Singing/Talking....not sure what they are doing....but ti's great whatever it is!



God's....Two Beautiful Princesses...on the Princess Eithene's 3rd Birthday!!




HE is OUT....



This is what happens after chest PT.....


He has been such a happy boy the last few days......It's awesome...what an added gift From OUR Awesome God!!

A Parent LOVES at all times.....God LOVES at all times!!!




We all have moments of upset/hurt/irritability or just plain crankiness and OUR God loves us through it ALL!!!!!

He may be NOT happy....but I still love him:)


Even IN the mist of darkness..GOD is always there!!!!



It's ALL in how you look at it...is that the light from the camera or God's light shining through that dark cloud!




A grandma loves At ALL times......



This is the IV...that lasted 9 days...Thank you God!!!!

BLESSINGS........Have you counted yours today....NO time like the present...you can focus on the tough things or you can count them as blessings....





If you see Devynn's face and my face ...what you see...that's love...This is HOW much God loves US!!!Actually God loves us more:)
^{Matthew5: 8} Blessed are the pure in heart, for they will see God.



Eithene and Devynn....a blessing to each other!!!
See the hospital is not so bad...God uses US At ALL times!!!



A gift of patience,compassion & caring....I am blessed to have a daughter that has those things...
She loves little Gabriel.....Eithene's little brother!


Mama gets and gives loven to her boy!


The redness on his checks are not from ALL my kisses....you can't really tell by the picture, but it was red red......

A visit from one OUR prayer warriors...and friends.....and as you can see Avery likes the attention!!!

The ICP...we liked it here; way better than the ICU.....but we were thrilled to return to our home floor!!!

A smile says things WORDS don't say!!!!

We are back on our home floor .....and Back with OUR Awesome team of staff and nurses....Avery pictured with Mireille one of our Primary nurses....

It's good to be back to our family floor......


The view that people would pay big money for......and I didn't even request this room....

God is good!! At ALL times!!!!!


We can see when our visitors are arriving......




OHHHH and there they are...YAY!!!