***Resort living... isn't my idea of a summers vacation***
But some times your ideas aren't what God may have in mind....


Last Thursday we came home after 5-6 weeks in the resort (aka...Children's)
After many many hours of organizing and rearranging things at the house I finally had gotten things in some kind of order...along with trying to take care of the other needs in the house including 4 kids....I was glad to see some familiar faces...with my nurses....and looked forward to seeing my other nurses next week!

Although Avery's seizures have been increased and as I say it ...OUT OF CONTROL.....his new med was increased yesterday....I hope change comes soon....

The last few days his respiratory status hasn't been great ...but took a turn for the worse yesterday and continued to go down hill today ....His saturation's went very low and his heart rate has been very very high....he has a temperature and not a low grade one...

Due to some tube issues last Friday ....We came in early this morning for what looked like a routine G/J tube change...although Avery had a bad night (Monday...respiratory wise )we got the tube done and came home after that ....when we came home he appeared to going into what looked like respiratory distress....and now had green bile in his venting bag.....

The longgggg story short is ....we are back at the resort......for continued concern/treatment for respiratory distress....After 6-8 tries they finally got an IV in....(Thank you GOD).We are glad to see OUR awesome nurses and friends here, but hadn't planned it to be so soon!


Prayers are always appreciated....as our journey continues (back here at the resort)...Please keep my other kids in your prayers as well...and Joe as this can take its toll...

Waiting and watching are the things that have been mentioned once again....

So I will wait and watch and see what God has planned and Trust that HE has a better plan than ALL!

Trust in the Lord with all your heart and lean not on your own understanding:)

I hope to write more soon...