Cincinnati here we come

Well, it is official. Everett will be have his pull through procedure with Dr. Marc Levitt at Cincinnati's Pediatric Colorectal center. The pull through procedure, or PSARP, was founded in 1980 by Dr. Alberto Pena. He is the Director of the Ped. Colorectal center there. He and his colleagues have traveled the world performing this on children in 3rd world countries. And, most patients travel from out of state to see these guys. So, Jason and I feel Everett will be in very gifted hands. Another thing, a friend of ours daughter had the procedure done with Dr. Levitt and is doing well!! YAY, finally a glimmer of hope.  Yes, there are still risks of enterocolitis, and it is increased 4-fold because Ev has DS, but Dr. Levitt assures us that if we can be "expert irrigators" we will be fine.  I hope he is right. He also says there is no reason Everett won't have bowel control and function like a normal boy.  The surgery will take place sometime in the Sept-Oct months and we hopefully will be home after a 2 weeks stay in OH. Right now we are in the process of obtaining all our records from Strong and dealing with getting our insurance settled.

So, as before, we will ask for all the prayers we can get for our little guy. He is a very special boy and makes us smile in so many ways. He laughs, and giggles, coos and "talks".  He has his own little personality.  And i think he definitely is his Mama's boy!! :)

I don't like to sleep

So here we are, another day, exhausted. Everett has been up about every hour the last  2 nights. He is super stuffy. Not sure why. Probably just for the mere fact that his little nose is narrower than other kids.  Needless to say, we are hanging home today. Went for a nice long walk (which he slept during) and woke up as soon as we hit our house! Gotta love it!

We have a lot to look forward to. Everett will be meeting the NJ group this weekend at Gigi's house. They can't wait. It will be his first official trip away (other than the hospital twice but we don't count that).  Let's hope all goes well. He will not be boating or fishing with Papa this year but maybe next! I am just so glad to be seeing my family. I tried to convince Jason to let us move back to Utica but thats a no-go. Oh well.

Everett

Welcome to Everett's very own personal blog. This is my first time so bare with me. I will try to keep everyone updated through this and post new pictures as we take them (which is daily).

In some ways I cannot believe that he will be 11 weeks old tomorrow. Where does the time go? On the complete other hand, I feel like he has been here for three years!!  I can't even remember what life was like without a baby, sleepless nights and every 2 hour feedings.  Gone are the days of coming and going as we please, sitting down to a meal and even showering when you want. This was the part we had "prepared" for. What we didn't prepare for was Down Syndrome, being admitted to the hospital at 5 days of his life, a diagnosis of Hirschsprung's disease, surgery on May 10th and a colostomy that leaked every 2 hours. But here we are, 11 weeks in, trying to get somewhat "adjusted" to this new and challenging life. Fortunately Everett is doing very well. Prior to his surgery his poor little belly was so distended he didn't eat well, was vomiting all the time and needed our help to go to the bathroom.  Poor little guy, he was such a trooper. Since having the colostomy, his belly is normal and so are all his functions. He seems so much better since then. He is still a pokey eater but we are getting there.  He has been gaining weight like a champ since his surgery and is now up to 11lbs 12 oz. His birth weight was 8-14 and after the admission to the hospital he was down to 8-1! So as you can see he has almost gained 4 lbs! YAY!

We have started physical therapy through Early Intervention. He has this every other week. We are working on head control and strengthening his neck, head and upper arm muscles. He is doing so well! He is also following his toys, reaching for them and putting his hands and toys in his mouth! All very good things!  He is smiling and cooing like you wouldn't believe. He even laughs when he sneezes! He definitely knows mine and Jason's voices and it just melts my heart to see his eyes light up when we walk in the room.

We have met a great family whose little boy has DS. He is 9 months old and I think he and Everett will be lifelong friends.  We try to get together for play dates when we can.  His Mom befriended us while we were in the hospital and thank God that she did. She is a Godsend for me and is an amazing support person and true friend.

I will continue to thank all of you for your love, thoughts, prayers and support for Everett and us through all he has been through. We could not have gotten through it without our family and friends.