FREEDOM!

We're free!
We're free!
And, freedom is now our reality!
(sung to the tune by, The Who)

Finally, our day arrived and at 4:30pm we left Children's Hospital. Gary spent the bulk of the day and the previous night with Vic, while I filled up the fridge with food and prepared for our return home. Vic smiled in the car and giggled on the way home but really let out a true guffaw, when Gary put Vic down on his bedroom floor. Bernie welcomed him with kisses and we all had a good laugh together.

It feels so good to have dinner in our own home and know that we can all sleep in our own beds with no machines beeping through the night or having constant nurse/doctor interruptions and best of all Vic will not have to endure the 11am daily blood draw! During our 20 day stay, poor Vic had 5 different IV's placed and required daily finger pokes to see where his protein and nutritional levels were. Unfortunately, we still need to take Vic to the hospital 3x/week for blood tests but they aren't daily. We'll do this for a couple of weeks to make sure that he has fully bounced back from the intestinal virus and is able to produce albumin as he needs to.

For the next few weeks we'll continue feeding Vic mainly through his feeding tube directed into his duodenum for 2o hours/day on a slow continuous drip with a feeding pump. It is a pain to have that pump going so much through the day, but it will be on our time! Eventually, we will introduce food into Vic's stomach again and slowly make sure his stomach can handle the volume that it once did before all of this mess. Also, it will be awhile before introducing oral foods but we are confident that he will have no problem chewing like he did before.

Yes, we still have many hurdles but it is so much better approaching them in our home on our own schedule.

July 8th is our Independence Day!

Along with some celebratory pics, I've included a few overdue photos: A photo of Vic w/ B-day cake and one with Vic wearing Gary's latest invention (Kid Listening helmet) which includes Vic's new headphones for when he begins listening therapy in September. This last pic, showing Vic's rash was taken a few days prior to our admission. That rash was everywhere! And below, I've included a little video from earlier today.