Jetty's Baptism- 4/28/12- Fleetwood Residence

So today I was baptized by a very nice gentleman named Reverend Vance. I am not sure what a Baptism is but it consisted of my family, great food, and a wet forehead.

That brother of mine is always a jokester.

Clay and Olive sure are happy to have their big brother home. I just wish they'd ease up on my face a bit!
I've been doing a lot of sleeping since I got home. I guess I am just catching up from the past several weeks.

It's 9:30 pm and i am more calm than i have been in weeks. It's amazing how much better I do at home!

This is what was waiting for us!

Heading home

Mommy and Daddy are here this morning to take me home. We are waiting for the medical supply company to deliver the equipment to us here in the hospital and train Mommy and Daddy how to use them. They want to use ambulatory services to get me home but Mommy nixed that! There have been many visitors (doctors, nurses, specialists, case workers, etc) from all over the hospital that have met me at one point over the last few years, come by to say goodbye as they have heard that I was leaving. My nurse today is in awe and thinks I am famous. Hopefully we are out of here in a few hours!

Mommy and Daddy sat down with all of my doctors this afternoon to talk about my future. I wasn't there but Daddy said he now knows where I get all my strength from and he was very proud of Mommy, as am I.

The Attending Pediatric Doctor said that my abilities to breathe on my own have come to an end. Sometimes I can make it a few hours without the bipap machine but that's about it. Much of this is due to my long stretch of seizures that are very severe. My Neurologist said that Ohtahara Syndrome is fatal and most don't live past 1 year. He also said that my seizures have progressed as expected to the point that they can not be controlled with medicine. Mommy and Daddy requested that I get to come home. Everyone agreed with their request as long as we could get the proper equipment available at the house. The discharge nurse (who Mommy had been talking to over the last few days) spoke up and said that it is already arranged and should be set by Thursday. The doctors all grinned knowing that Mommy gets things done!

On Tuesday, July 7th 2009, the worst news imaginable was delivered to Mommy and Daddy when they were given my prognosis at a similar meeting to today's. As hard as that was for them, it did not prepare them for today. I write this most difficult post to date with a heavy heart as my days are numbered. I am so excited to get to go home and enjoy them with Clay and Olive who I haven't seen in over 3 weeks. Daddy promised to put the boat in the water and take me for a cruise. This is going to be a special weekend for my family and I am really looking forward to it.

I must end this post with a quote from one of my favorite writers... "Don't cry because it's over, smile because it happened". - Dr. Seuss

I've now been here for three weeks and I am not getting better. My seizures are so bad now that they almost have to put me in a coma to calm me down. I am still in need of the bipap machine every couple hours but my lungs are finally clear. They don't think I will ever be able to fully breathe on my own again without the bipap machine. Maybe if they didn't give me so much seizure medicine, I would be strong enough to breathe on my own!
Mommy and Daddy are meeting with all of the Doctors here at 4pm today to discuss bringing me home. I really miss Clay, Olive and Barney... its been 3 weeks since I have seen them!
Hopefully, my next post will be from the car ride home!