Happy Holidays!

This time of year brings a mix of emotions for many reasons. Of course we are thrilled to be home with Molly but it is also a reminder of when our journey began. We talk about it less now but every once in awhile one of us will bring it up. Three years ago I received a call from the doctor telling me they think they saw something wrong with her heart and wanted to send us for a level 2 ultrasound in Boston. A few days before Christmas we were being rushed around from specialist to specialist...ultrasounds, amniocentisis, fetal echos. I can remember the exact feeling that I had as we waited in the food court at Tufts Medical Center while we had lunch in between appointments. I couldn't eat because I was so nervous and Jay ate so much because he was nervous. After a series of appointments and not many answers they sent us home to wait for the results of the amnio. Two days before Christmas we received a call saying the baby didn't have Down Syndrome but we wouldn't know the rest of the results for a few more days. We felt a little bit of relief and THOUGHT we were prepared for whatever information was going to be thrown at us. It was very difficult to enjoy that Christmas. We were so sad and devastated because just a few years before at the same time of year we had to deal with a miscarriage. This time was a little different because we knew at the end of it all we were going to have a baby. She was going to be different but she was going to be ours and we were going to fight with all we had...all three of us and that is what we did!

The following Christmas was a little different. It was Molly's first Christmas. It was spent in the hospital. Of course we wish she was spending it at home but we made the most of it. I wasn't all that upset about spending it at Children's because we could see the light at the end of the tunnel. Discharge was just 15 days away! Of course if you told me that we would still be there at Christmas when we got admitted I probably would've started drinking at that point. But it was good. We stayed the night before because we had to do all of Molly's cares for 24 hours to show that we could take care of her. We had a nurse that we loved. We took Molly for a walk down to the lobby to see the tree and around the unit. Of course she was still on Methadone and Ativan so she didn't see much of anything. Christmas was pretty uneventful. We had a few visitors. Fifteen days later Molly was in our care! That was the best Christmas gift of all!!!

Last Christmas was good. It was our first Christmas home. Molly was just getting over a bug that had landed her in the hospital for a few days. It was our 2nd unplanned admission since she had been home. As much as we hated for her to be sick, we were also happy that she was sick and there wasn't something wrong with her intestines that required surgical intervention. She had a busy year that year. She was bronched a few times. Her trach was removed. We were still being followed by many specialists and were always at Children's. But we were so happy to have her home with us and I think it was the most special Christmas to date.

And that brings us to this Christmas. I haven't been this excited about a Christmas since I was a kid. I'm excited for many reasons. The first reason is because Molly's had a pretty healthy year. She had one admission to Children's and that was to have her trach site closed. She's had a few colds but she handled them great. Her sats remained 97-100. She didn't get a fever (knock on wood). It's such a relief to have our first colds behind us. She has come so far and made so much progress this year. From eating and drinking everything by mouth to pulling herself to stand considering last Christmas we still had to put pillows behind her when she sat on the floor. She is only on 3 medications and once she turns 3 we hope to get rid of her thyroid medication along with her Endocrine doctor. We have one more appointment with Growth & Nutrition in March and then we'll be done with them. That will only leave cardiology which we will never get rid of. We were also able to successfully turn down her pacemaker! And most recently we have converted her crib into a big girl bed! She's growing up so fast and I love every second of it. As much as I love that she's still little her "baby years" have been so tough. I love the little girl she is turning out to be. She is so sweet and stubborn and independent and strong willed. I couldn't have asked for more perfect little girl!

This has been the best year for Molly so far. I'm so happy that she is where she is. My hope for the new year is that she remains as healthy as she has been. I hope she continues to meet her milestones. I hope she enjoys the life we are giving her. She is so deserving of everything that is brought her way. I'm definitely not saying that she's more deserving than any other child because I don't think that's the case. Every child deserves the best! Unfortunately not every child will have the best or even a shot at the best and we have witnessed so much of that this year. So we are more grateful this year for Molly and her health than any other year. We hope for nothing but health and happiness for all of our family and friends that have continued on this journey with us. Your support, love and interest in Molly means more to us than you'll ever know. Happy Holidays and we love all of you!

Kerry

Always somethin'!

Over the summer we realized that Molly's "stuff" was taking over our living room. No matter how we organized or arranged it we just couldn't keep it under control so we decided to turn the basement into a play room. We started cleaning it back in August and Jay put the finishing touches on it about a week ago. Molly didn't adjust well to it. She is a creature of habit and doesn't do well with change. But with each day she was getting more used to it. On Thursday we had Early Intervention and since she doesn't like them I figured we would just have our session in the living room until she was more comfortable with her play room. After EI was over we went down to the play room. I sat her on the floor and turned her TV on so I could run upstairs to grab her lunch. On my way up I stepped in something wet. The entire rug was wet. It's happened before where the hose pops off the washing machine and floods the basement. Except this time I noticed there was also toilet paper on the floor. I called Jay and brought Molly back upstairs. Turns out there was a sewage back up that was supposed to be fixed over the summer. I don't know if it never happened, if it did and it backed up again or what happened. Luckily where I sat Molly wasn't wet...yet. It started creeping across the floor. Jay called the property management company (we live in a townhouse) and that night the cleaning crew was at our house, ripping up the rug, cutting out part of the wall, washing what could be saved, etc. We have been dealing with insurance companies, property management company, sanitation and restoration companies. Right now the clean up was covered but we're waiting to hear about the restoration and our property. The personal property will not be covered but we really only care about the walls and rugs. Everything else can be replaced over time. Of course the most important think is Molly's health. Everyone had freaked us out because Molly had been exposed to it and because her immune system is already compromised it scared us that much more. It made us forget about all of the damage and what we had lost in the back of our minds for a minute.

Molly had a doctors appointment the next day for a wellness visit. Usually wellness visits are once a year but because of her medical history and the fear the pediatrician has for Molly we are seen twice a year. She was a little over 24 lbs and 31 1/4" long which puts her in the 5th-10th percentile for weight, height and head circumfrance. First up on my list of concerns was sleeping...or lack there of. It was fresh in my memory because I had only had 3 hours of sleep the night before. I explained how she wakes up every single night. Some nights it's only for 15 minutes, some times it's multiple times a night and other times she's up for 3 hour stretches. We wanted to start her on Melatonin to reset her "sleep clock" but she wanted to wait 2 more weeks. She wants us to try not picking her up when she wakes up and just give her her blankie and tuck her back in. She also wants to introduce naps again. So we are now on day 3 and she woke up every night. Tucking her back in doesn't work. Naps are never going to happen because it was almost 9:00 before she went to bed.  I can't go to bed when she does because #1 I have to work and #2 I like my quiet time. I'm not going to make it two more weeks. We also discussed preschool. I expressed my concerns about sending her and told her that we were going to enroll her in the pubic school system but we were going to use it for the therapies that they offer but not send her to the classes. She told me that she was OK with that (not that I cared what she thought) but she would have to be exposed to germs at some point. Early Intervention isn't going to be happy to hear that but it's our decision. Next up, we talked about Orthopedic. EI also isn't going to be happy to hear this because they keep pushing for it. Last up we discussed how she was exposed to the "spill" in our basement. I asked if she had to be put on an antibiotic and she said that since she's already on Amoxicillan there's no need to add another one and to just keep an eye on her. So far she's been fine and we don't anticipate anything changing. Overall, it was a good visit and she was thrilled with how she looks, her progress and how she looks like a "regular toddler". Of course we have many things to work on but she'll get there.

We decorated our tree this past weekend, put up Molly's tree that my parents got for her when she was in the hospital and took her Christmas pictures. This time of year means everything to us. It's so much more than gifts. After all we have been through with Molly it has made us truly appreciate the meaning of this time of year and I'm looking forward to spending the holidays at home with a happy and healthy Molly while thinking of all of the kids that are fighting so hard along with their families.

Here are some pictures from our weekend! I hope you're enjoying your holiday season!