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!!