Vacation!

Two years ago I never would've dared to think about planning a vacation with Molly. I guess part of me didn't think it was ever going to happen because never did I think she would be well enough or I would trust that we would be able to take care of her that far away from a hospital. Who am I kidding? From Children's. Even a year ago we still weren't in a place to make any long term plans or think about a vacation. But now she is a whole different kid and I say kid because she's not a baby anymore. She is growing up and I love it! Part of me is sad that I missed out on a lot of her being a baby but I'm thrilled that she is with us, doing fantastic and being a little girl.

Our friend's family was generous enough to allow us to stay at their condo for 3 days. We left here Tuesday morning and headed up to NH. The condo was right down the street from Weirs Beach. We didn't do a whole lot the first day. Just unloaded the car and got settled in. Jay's family also has a house not to far from there so he was familiar with the area. We had plans to go to Santa's Village the next day so we tried to get to bed fairly early because it was a two hour ride from where we were staying. Well, that night was a nightmare. We weren't even sure we were going to get to Santa's Village the following day. We put Molly to bed and just as I was getting ready to go to bed she woke up. She was crying and wouldn't calm down. SO I took out the ipad, put on her favorite movie and she calmed right down. Except that backfired because all she wanted to do was watch the ipad and wouldn't go to sleep. I tried to put her in the pack n play with the ipad but then she would hit something and the thing would shut off so I'd have to put it back on. So frustrating. This went on until 2am. I was finally able to go to sleep and she woke up at 5:45 for the day. I couldn't believe it. I wanted to throw up I was so tired. We heard it was going to rain on Thursday so we made the decision to suck it up, get dressed and head up to Santa's Village. Molly was in a great mood and we figured she would nap on the way up. We were in the car for about 3 minutes and she was out! We had to wake her when we got there. Our first stop was the carousel. I figured she would like it because she's been on the rides at the mall and loved it well, I was wrong...very very wrong. She started out with one hand on the reindeer and one hand holding on to my shirt. then she decided that she was going to put both hands on my shirt, clenching for dear life, and faced backwards for the entire ride. I had to sing "The Wheels On The Bus" for the entire ride so she wouldn't burst into tears. All the while I'm thinking to myself "please hurry up and stop the ride". After that was over we fed her lunch and just walked around the park to see if maybe there was something else she could try now that she was more awake, full belly and ready to go. I guess the thing we didn't think about was the signs that say "nobody with a heart problem can ride this ride". I thought about when she's older but not at 2. She still had a great time watching all of the kids, being outside and taking in the new surroundings. We will definitely take her back when she's a little older and can walk (she's VERY heavy). I'm so happy that we went and were able to make these memories. We wanted to make absolute sure she was tired for the night so we took her for a walk down the beach. We went into all of the little shops, went to the arcade. I tried to take a picture with her in the photo booth but she was more interested in looking at herself in the mirror on the side of the booth so that was a flop. We put her down for the night and she went right to sleep and slept all night...WOO HOO!!

We didn't have a whole lot planned for Thursday because it was supposed to rain so Jay's cousin gave us a bunch of tokens for an arcade that we had planned to go to while we were there so that's what we did. We tried to put Molly on a few of the coin-operated rides and she was not having it. We found one that she would tolerate so I guess it wouldn't matter if we did find a ride for her to go on at Santa's Village because she probably would've had a meltdown anyway. Once we were done we headed back, fed her lunch, put her down for a nap and once she woke up headed out to do some more shopping. We started packing everything up so we could head out early this morning.

We were home by 10am, unpacked by 11 and Molly was down for a nap by 11:30. Since we both felt like we were going to fall on our face if we didn't do something we went out. We ended up going out to dinner at a Mexican restaurant up the street. Molly ended up eating a cheese quesadilla and some of whatever it was that Jay had. There are very few things that she won't at least try. Some things she'll take multiple bites of and other things she'll eat one bite and won't take another but at least she tries it. I'm so excited to get back to Growth & Nutrition so they can see all that she does now!

We had a great vacation. We didn't do a whole lot but we were away with just the three of us. Playing on the floor, laughing at Molly because she's that hilarious, making memories that I will cherish forever. It was the perfect vacation and I wouldn't have done anything different!

Always Something

The majority of our days are spent trying to prevent Molly from getting sick...disinfecting counter tops, sanitizing and washing our hands, wiping down shopping carts, tables, chairs, playground equipment, etc. We have hand sanitizer in every room of the house, both cars, diaper bag, purse, strollers and strollers. When we show Molly the Purell bottle she rubs her hands together. Where is that on the list of milestones because it's at the top of my list :) But no matter how hard we try sometimes it's just not enough. On Saturday we noticed that her poop was more wet but we just figured that she was eating a lot more things now and probably didn't agree with her. Sunday she was really crabby and just miserable. Monday she had a runny nose, cough and her sleeping wasn't great. Tuesday she seemed a little better but she woke up crying and sweating but she never had a fever, her O2 was normal (98-99) and her heartrate was normal. We assumed she just had a cold. We had been giving her Tylenol since Sunday just to keep her comfortable. Yesterday morning she woke up with a rash on her face. It was only on her face so I assumed it was because she sleeps with her blankie on her face and was hot. I emailed a picture to a few of our very wonderful nurse friends to see if they thought it was a heat rash because that's what we were thinking and they said that it could be. So we didn't put anything on it because that is always our first instinct. I looked up heat rashes for babies and it said to keep it dry, don't put anything on it and try to keep the baby cool by turning the AC on and putting a fan on them when they sleep which is what we do anyway. When she woke up today it had spread to her chest, stomach, back and diaper area so I took her to the pediatrician. She looked at her throat and it was red and where she's had a runny nose, a lot of muscous and a cough the rash is a result of a virus. It should run it's course in a few days. She told me to give her Benadryl which makes me nervous because when she was in the CICU they never liked to give it to her so I emailed our good friend in the CICU to find out why and it's OK to give it to her now. I gave her a dose and she took it in her mouth like a big girl! Oh and she weighed in at 24.6 lbs!!! That's up one pound from the last time she was seen at Growth & Nutrition.

We were also approached by one of the nurses that used to take care of Molly when she was in the hospital. Actually she's more than a nurse to us. She is a great friend and will always be a part of our lives. She took care of Molly from the day she came in until the day she left. I don't know how we didn't scare her away! She is running the New York City Marathon in November and asked us to be a patient partner in the Miles for Miracles. We are so honored that she picked Molly to take on this journey with her. She will be running 26.2 miles in honor of all of her patients and more specifically Molly. She is required to raise a minimum of $3,000 and we have agreed to help her out with this. All of the money raised goes back to Children's Hospital Boston and well, everyone knows how we feel about Children's Hospital. We are trying to think of fundraisers or any way to help her raise these funds. We will be cheering her on and are so proud of her. We love you, Kristin!!! You can follow her progress at www.runningfromtheheart2012.blogspot.com or read about the Miles for Miracles at http://howtohelp.childrenshospital.org/newyork/page/Kristin-Barber.htm#.UAT4ggWjEMk.facebook

As always, thank you for checking in our miracle!

Love, Kerry

My hero!

I am not a person that is easily impressed. I don't get excited easily. I don't jump up and down when I am excited. I don't know when that changed because when I was little I would get so excited on Christmas Eve that I would go to bed at 5pm and lay in bed all night waiting for 4am when we would go wake our parents up so we could open gifts. Since Molly has come into our lives I'm starting to feel that level of excitement again. Well, maybe not the first year. I think I was too scared to get excited about anything because we were always waiting for the bad to follow the good. Each day since Molly has come home she has gotten healthier and stronger. We don't see it from day to day but we can see it looking back. I don't even have to look back very far. Recently each day brings new things. New foods, new developmental milestones. We could not be prouder.

Molly recently started crawling. When early intervention started coming about a year and a half ago the woman that was coming at the time told us that Molly was probably going to need a wheelchair. I don't know what she was basing that on but I was devastated that she even thought that. I don't know if it was because she was 1 and wasn't walking or what her reason was. To make a long story short, she no longer comes to our house. I wish I could find that woman now and show her all that Molly does. She acts like a normal little girl. Does she act like she's 2? No, more like a year but every day she does something that gets her one step closer to where she should be. She crawls all around. She gets up on her knees and is co close to pulling herself to standing. We have been working on standing a lot more with early intervention. They suggested to me back in May that she may need braces for her ankles. They no longer think that. I wish when I said "she just needs time" that people will start listening to me. She stands for pretty long periods of time and plays while standing up. She gets into things that she's not supposed to. She is just like a kid that has never been through any medical procedure.

Our biggest challenge so far...feeding. Of course this would make sense because she never learned to drink from a bottle. She was never fed any type of baby food. When we were in the hospital we only cared about getting her the proper nutrition and we didn't care how she got it as long as it was making her healthy. Now we are focusing on the "how she's getting it". She has been eating the same thing for awhile now...baby food, yogurt, baby food yogurt. I keep asking the Nutritionist and early intervention what the next step is and how do we get there. They don't have the answers so I'm just doing it myself. We offer her everything we have and for the most part she will try anything. Usually it's a few licks and that's it. Well, this week I offered her mac and cheese and she loved it!!! I almost couldn't believe that she ate the whole thing after eating a yogurt. That was fantastic and I was so excited but it's not good enough. Why stop there? The next day I tried chicken nuggets dipped in bbq sauce and she ate every one of those too. Today she had lobster, more mac & cheese and a whole piece of birthday cake! We are so amazed by all that she has done just in this week alone. After this week I AM EXCITED! All of our hard work is finally paying off. I hope she continues with her eating. I'm hoping at our next growth & nutrition appointment in August that they will stop her g tube feeds all together. Our biggest hurdle before getting her gtube removed is getting her to drink enough fluids. If she can't drink enough she won't poop and if she doesn't poop that means we don't get any sleep because a constipated Molly is a very unhappy Molly. So we're not rushing it but we are enjoying all of this new found normal kiddo stuff. To sit back and watch her play and babble makes us so happy and we are enjoying every second of her! She truly is our hero!