We're up and running again - Copy of Mass Email sent

Hello everyone!!!!! Happy Halloween!!!!!

It's been a very busy, hectic couple of weeks. I will try and make this as brief as possible.

Two weeks ago on a Saturday, Jack had a very bad night. I changed approximately 12-15 diapers overnight resulting in Jack loosing 3 pounds and having to go to St. Barnabas Medical Center to get hydrated on Sunday. Forunately the doctors at St. Barabas were constantly talking to the doc's in Philly and it was decided that all he needed was fluid and they sent us home. We had to follow up with Philly the next day (monday). So I trucked down to Philly and believe it or not his counts were good and so were his electrolytes but his nutrition wasn't. Dr. Bunin decided to give us a chance to work on his nutrition at home and do a 3 day diary of his food intake. We actually got Jack to gain back a pound but it still isn't enough. We had to return 3 days later on a Thursday (last week) and it was decided that if he doesn't gain over the weekend that Dr. Bunin was going to admit him Wednesday after Halloween.

Well, yesterday came (monday 10/30) and I went to clinic and even though Jack still didn't loose any weight, he still wasn't gaining and Roy and I decided that it wouldn't do Jack any good to sit and wait until wednesday and just have him admitted and work on getting a central line of some sort put in and start him on some TPN. I woke up this morning feeling very depressed that I wasn't home with Christina for Halloween and I was going to miss her parade at school so I told Dr. Bunin I wanted to go home. There was nothing planned but hydration for Jack so she actually gave us a 6 hour pass. I left the hospital at noon, got home in time to go to school and see Christina and Jack wanted to walk in the parade with his friends and Mr. Ron, the class aid. He was so happy to partake. He walked around the school circle 2 times and that was a lot for him. Once the parade was done we took Christina out of school and brought them home to trick-or-treat at our neighbors and then Roy hit the road with Jack at 3:45 to get him back to the hospital by 6pm.

Tomorrow (11/1) will be the big day for Jack to get a port put in. I will get Christina off to school and I will get there shortly after the surgery is finished. Then once the port is placed TPN (IV nutrition) will be started and this will give Jack's gut a chance to rest and Roy and I have vowed that this will be our last long hospital stay.......Dr. Bunin expects us to be inpatient for approximately 2-3 weeks and since Jack will have the port and if he needs to continue with IV nutrition then she is thinking we could do it at home. "We'll See!" Jack has done so well in the past with TPN that I know he will do well again.

In between all of this I was able to volunteer again for the National Foundation For Ectodermal Displaysia 6th Annual Halloween Bash, their biggest fundraiser for the Year on Thursday (10/26) in New York. What a fantastic evening.

I can't thank you all enough for the prayers in the past, they have certainly been answered. The power of prayer has brought Jack through!!!!! Please remember us again.

Our little "Witch" and "Power Ranger"

Trick or Treating

Walking with Mr. Ron at the Halloween Parade at School