A tribute to a great nurse!

On May 5, 2010 Molly was transferred to Children's Hospital Boston. That was the day that one of the most special people came into our lives. Of course we didn't know it at the time because we were concentrating on Molly, getting her stable, learning everything that comes along with a child like Molly, oh and recovering from a c-section. Molly was admitted during the day but that night a very special nurse came on and took care of Molly for the very first time. I'm sure she was wishing that night that she had taken the day off. Kristin took care of Molly just about every shift that she worked. I remember the first time that I met Kristin. I was sitting in Molly's room staring at her monitor when Kristin poked her head in because she was there for a meeting. She said "I just wanted to introduce myself. I'm the one that takes care of your daughter at night." I wanted to reply with "I don't care, I just want to take her home and I don't want to get to know anyone". I wasn't in a good place and I just wanted to cry all the time for obvious reasons. The first time we really got to have a conversation with her (other than on the phone) was one of the most difficult nights we had had. Molly was in the cath lab and it was taking a really long time. Longer than we had expected. Kristin shift had started while Molly was down there and she had to explain to us that Molly was having a tough time and they were stabilizing her. Everyone remembers the surgeons and doctors but what people don't always remember is the tough job the nurses have of not only having to deal with parents like us who ask a billion and a half questions but they have to deliver horrible news, make those difficult phone calls in the middle of the night, etc. It's not a job I could do, not a job many people could do and not a job many shouldn't do. But there's no one I would've rather had calling me than Kristin.

As time past we became very close. She became more than just Molly's nurse but a great friend. She was there the morning of Molly's first open heart surgery. She took care of her after her open heart surgery. She gave us something that not many people there could and that was piece of mind and some sleep. Even if Molly was having a horrible night it was EASIER to leave knowing that Kristin was taking care of her. With each passing month she would usually be the one to make Molly's birthday sign. On Halloween she dressed Molly up as a doctor and made sure she took pictures so we could see her in it in case she got too hot and had to take the costume off which of course she did. She just went above and beyond what a nurse is.

                This is the first sign that Kristin made for Molly

Of course there were times when we butt heads but she always understood that we were stressed, upset and frustrated for being there for so long (Sorry, Kristin). She cried with us, cried for us and I'm sure cried because of us. When things were great she was happy for us and when they weren't well, she could sympathize. She definitely made our stay there a little easier and we will always be grateful to her for all that she did. Because of all that she did we partnered up with her to raise funds for Children's Hospital Boston as she runs the Miles for Miracles Marathon in New York one week from Sunday. She has been training for months and has never done anything like this before. On top of training for a marathon she is working at Children's, going to school part time, taking care of her family and dog. She will be running 26 miles for the very first time. This Thursday we get to celebrate with her and her husband at a dinner for Miles for Miracles. We are so proud of her and couldn't be happier to have her as a part of our lives. We love you, Kristin! Good luck!!

"Baby Steps"

Molly has been very busy which makes us very busy. I have been working with her to pull herself up. She did it once months ago and never did it again. She would put one foot up but never went any further. So I put my hand on her bum for a little support and she would push off into a standing position. She finally did it by herself but would just stand in a split position rather than bring her feet together. Well, now she's a pro and does it all. She started pulling herself up in front of the TV...well, that really shouldn't be a surprise to anyone. Then she started doing it in her bed which is my biggest nightmare because she doesn't sleep as it is. And now she does it everywhere. This morning she greeted me by standing up in her crib. It kind of surprised me because she has never done it. She was like a normal little girl just standing there waiting for me to get her. Now she just needs to learn to get down. She will get down in her crib but she won't do it anywhere else. She has even started taking a few steps. Of course nothing comes without a whole new set of problems. Her ankles are so weak. Her left one is worse than the right one. We don't know if it's because she had a Broviac line in that leg and they had to cut the muscle but it makes sense and that's what we'll go with. Not that it matters what the reason is but we (Jay) always has to have a reason why. She is always rolling her ankle and standing on the inside of her foot. Since she's been standing more she has been correcting it but I think she's going to need braces for at least her ankles. We have an appointment with her pediatrician next month so I'm going to ask for a referral to see ortho. Every time I think we're done with a specialist we end up adding them back in but I know that she will benefit from it and she needs it.

We appealed Synagis (RSV Vaccine) and she was denied. I received a call from the insurance company telling me the pediatrician had sent in an appeal and asked me if I would like to add any type of information to help with the appeal. I asked what she had for a medical history and she said nothing. So I gave Molly's 30 page medical history and it was submitted. They denied her because she's over 2 and they couldn't justify making an exception and the pediatrician agreed. I have never met a pediatric doctor that doesn't advocate like this doctor. UGH! So we are going to stop play group on November 1st. Early Intervention wasn't happy about it but I really don't care. I know that some people are thinking that we can't protect her forever and I know that's true but I can protect her right now and that's what we're going to do. I've said it a million times that if she gets sick we are the ones that are up with her at night. If she ends up hospitalized we are the ones that sit there by her bedside. So say what you want but this is how it is. No play group! We are in the process of making our basement into a play room. Jay's been cleaning it out and it's almost ready to be painted so she will have her own day care center down there.

We had a new speech therapist start today. Molly seemed to like her. She'll like anyone that will blow bubbles at her. She had some different ideas so we'll see how it works.

Other than that, we've been trying to stay healthy and just keep making baby steps forward. She makes us so proud every day.