1 Week Under Our Belts!

Maddie has been home for a week now and continues to improve in all aspects. Her current weight as of yesterday is 7 lbs 11 1/2 ozs. She was 7lbs 6 ozs when she left Children's last week. According to her pediatrician she should be gaining about 1/2 oz a day so she is doing well. She does still reflux quite a bit which had us concerned about her weight so we were relieved to find that she was gaining weight. She is not bottle feeding quite as well as we had hoped she would be at this point, so for most of her feeds she receives a majority of it through the feed tube. It's taken us most of the week to get the whole feed tube down as far as knowing how high to have the syringe so that the formula trickles down at just the right speed so as not to fill her little belly to fast causing her to send it all back at us. (Just for a visual you can see her feed tube in the picture above. It's a big syringe (just under the yellow animal)connected to a long tube (running by the green pacifiers)that attaches to another tube (at her feet by the pink and white blanket) which in turn is connected to a button right on her belly where the food enters her stomach.)

Maddie's new challenges now will be pushing her limits as far as her range of motion goes with all of her joints through physical therapy. She came home with splints for her feet, legs and hands as well as a brace for her hips. Yesterday she had her first physical and occupational therapy follow-up since leaving the hospital and it went extremely well. Dominique and Nancy are Maddie's therapists in those respective areas and have been working with her since day 1 and for that we are extremely lucky. They, much like the nurses, have treated her as if she were their own and we are very optimistic that Maddie will continue to progress as she has thus far based on past progress and the fact that Nancy and Dominique are her therapists. Thank you ladies.

As for everyday life here in Orchard Park, things are about as hectic as we had imagined however aside from Maddie's extremely structured feeding schedule we are thoroughly enjoying flying by the seat of our pants.

Zack was sleeping so he's not pictured. It's also the reason we were able to put the twins on the floor!

Two days have passed and all is well!

Maddie is doing great and so is Luke. We truly believe that coming home was the best thing for her. She's eating great, and keeping it down (the formula that is) and has gained 2 ounces since coming home. The first morning with both of them in the house was surreal. They both woke up at the same time; Maddie moaning softly and Luke screaming like he's being tortured, and after a minute they both stopped and amazingly started back up at the same time about 10 minutes later. Totally weird. This is so awesome; the concept of twins is such a reality now with both of them under the same roof. When we layed them on the floor together they acted as if they have know each other for at least 9 months.
Since so many of you read this we thought it would be appropriate to tell you all something using this forum. When we went into Children’s Hospital we had no idea what it was all about. Sure we had seen the Variety Club Telethons and I'm sure we are all aware that at one point a short time back the idea of closing the doors there was looming. Still we had no idea what exactly it was that they did there. We tell you this now; Woman and Children's Hospital will for ever hold a dear spot in our hearts. Maddie is one heck of a strong girl with a ton of spunk and a will like no other, yet we can honestly say that her being home here today in such great condition had alot to do with the diagnostics and treatment from the doctors and more importantly the love and care she received on a daily basis from her nurses. So many nurses have touched both Maddie and our hearts and we could never be thankful enough for their care and love for her as well. Jan, Adrienne, Julie, Roxanne, Kathy and Betty just to name a few of Maddie's nurses deserve a spot in all of our prayers for the love and compassion they display for the children they care for 24/7 as if they are their own. We witnessed this on a daily basis and never once did they seem like someone just doing a job. They always went the extra mile with both Maddie and our family. In addition we would like to take this opportunity to extend our gratitude to Jan for answering our never ending questions as well as giving us the confidence that we needed to bring Maddie home and know that we could take care of her. She prepared us extremely well, and for that we will forever be grateful. This March we will watch the Telethon with new meaning and more importantly we will watch it together as a family with Maddie.

There's no place like home, there's no place like home. The heels of Maddie's ruby red shoes have clicked together for the last time and now Kansas is Orchard Park NY. We brought her home this evening at about 6 pm and are currently still celebrating so this update will be short. Enjoy the pictures, it's so nice to be able to see all 4 of them and especially the twins together at last. We will keep you all posted and continue to post pictures of all the kids.