Forever Grateful!

As I prepare to send out invitations to Molly's birthday party I find it hard to believe that she is going to be 4. I was OK with 3 because 3 still seemed like she was a baby but 4 seems so much older. I want to keep her a baby just one more year since I missed out on so much of her being a baby. The fact of the matter is that she is growing up and I see it every day. She is such a little girl now. She is so smart and is making great progress every single day. She makes us so proud with every new thing she does. Her speech is coming along so fast. She is saying more and more things and she corrects something when she doesn't say it right the first time. Let's be honest, with all of the therapy she gets in the course of a week, I'd be worried if we didn't see progress!

This year has been such a great year for her. She has overcome so much and had a great time doing it all! Since she turned 3 she has graduated from Early Intervention and started outpatient therapy (thank goodness). She had her g tube removed without missing a beat. She started preschool and even though it was a really rocky start for the both of us she is loving it and thriving and (knock on wood) has remained pretty healthy. She had an unplanned admission to Children's in November but bounced back quickly! We took our first plane ride to Disney World thanks to the amazing people at Make A Wish and Give Kids the World. It's a trip that we will never ever forget and are grateful for every single day! She had her first trip to the eye doctor which ended in her needing glasses and she does well with them for the most part. Hopefully we have avoided eye surgery because the glasses seem to be doing the trick. She also started wearing SMOs or braced on her feet. I really did not want to have to go there but I'm so glad we did because they have helped her walking so much. Her ankles still turn in when she doesn't wear them but that just might be how she will always walk...minor issue in the big picture. Developmentally she has come so far. When she turned 3 she was only walking while holding on to our fingers and now she walks like she's been doing it forever. She wasn't saying any words when she turned 3 and now she says a whole bunch of things, knows every single animal, all of her letters, numbers, colors, sings about every song to ever show she watches...and that's a lot : ) She LOVES puzzles and has since graduated to jigsaw puzzles. She is just so smart and I never would have imagined she would've have turned out to be this happy and healthy little girl! I'm so grateful every single day for all that she was able to overcome. I can't imagine my life without her and at one point I thought I may have to face that reality.

She recently had a cardiology visit. I think this appointment is more stressful on Jay and me than on Molly. There's no reason why because she's doing fantastic but things have been going so well for so long I think I'm waiting for things to go in the other direction. But we showed up and her cardiologist decided he wanted to see her before he made the decision if she needed an echo. They did an EKG and everything looked great. Her cardiologist listened to her and said that he could barely hear the leaking on her valve and couldn't really hear her murmurs either. That's not to say that they're not there but it's just very small...woo hoo!!!! We got the cardiology report in the mail the other day and in it stated that she does not have any restrictions on anything she does. It's almost unbelievable. I can't explain the feeling of happiness we feel when we hear things like that when it pertains to her heart because I never thought she would be able to do things like other heart healthy kids! We gave up holidays in the hospital, friendships, my job, our entire life so that we would have a life time of news like this. There was a time I could only wish I could type great news every day and now that time is here! It's all because of the wonderful work of all of the nurses, surgeons and doctors. Say what you will about all of the bad PR going on with Children's right now but we know the truth. We have seen first hand how wonderful they really are. How they save lives of kids that don't have another option. They give hope to families that thought they didn't have any hope left. They are the reason that Molly is doing as well as she is and will continue to grow and be a bratty teenager and successful adult!

We are participating in the NStar Walk for our 3rd year. We are selling tshirts through April 13th. They are made by Molly. She had so much fun making it! You can purchase them here. Part of the proceeds will go to the walk. Or if you do not want to purchase a tshirt but would still like to donate you can also do that. Either way, we are so grateful for all of the love and support we receive for Molly. I hope one day she realizes how much she is loved!

Purchase TShirts Here
Click Here to Make a Donation

~Kerry

                          3rd Birthday Party!

                            NStar Walk 2013

                                     First Day of School!

                               Getting her G Tube removed!

                            1st day with the glasses

                     Make A Wish Trip

                             Hospital Visit : (

NStar Walk & Cardiology Visit

It’s no secret that Molly is the most important person in our life. We have devoted every spare second and every ounce of energy towards her health and well being. It’s also no secret how much Boston Children’s Hospital means to us for good reason.

One day back in May 2010 Jay and I were on our way to the cafeteria at Children’s and we saw advertisements on the floor for the NStar Walk benefitting Boston Children’s Hospital. At the time we had no idea what it was and we honestly didn’t care at the time because we had so much going on with Molly. But once we realized what it was we said if she ever made it home we would do the walk.  In June 2012 we registered for our first NStar walk and were able to raise $4500 because of the generosity of so many people that love her. 

Last year was our second year. We had a fantastic group of people that worked so hard to help us give back. And with it we were able to raise $6500!!!!!!!! To say we were excited is an understatement. We had such a great day. So many memories were made and that’s what the majority of our life is all about. 

We have registered once again and on June 8, 2014 we will be participating in the walk. It’s one of our favorite days of the year. We are hoping to have most of our team back again this year and then some. So if you are interested in walking with us we would love to have you! If you would like to help us raise money but you can’t make the walk you can become a virtual walker. I’m so proud of all of our friends and family that have helped us raise money for Children’s. It’s not something they have to do but they do it because they love us and our family. I’m also proud of everyone that has ever made a donation to Children’s for whatever reason! We are so grateful to all of you!

If you would like to help us exceed our goal by making a donation you can do so by clicking on the link. Just remember that no donation is too small and every amount is greatly appreciated!

Click here to donate 

We are also going up to another big appointment. Molly has a cardiology and EP appointment on Tuesday. She will be seen in Boston by cardiology for an echo & EKG. She will then be seen by EP so we can discuss the long term plan for her pacemaker. Her cardiology wants to find out if we are going to keep it in until the battery dies or if they want to remove. Jay and I vote to keep it in until the battery runs out. I’ve been stressing about this appointment like I always too. It has been on my mind since Christmas. I have no reason to be nervous really because her echo is always unchanged but I’m just waiting for the time that he tells us it has gotten worse. She looks fantastic and there aren’t any outward signs that it should be different but I just want to put the entire day behind us. I feel like I can’t make any plans until this appointment is over. I will update it once it’s over and I can hopefully breathe a sigh of relief!

I hope everyone is staying warm this winter!

Kerry

Heart Parent

Before Molly came along our life was so different. We would go out all of the time. Whether it was to dinner or to a movie, to the mall or just wander around Target and buy things we didn't need. Go fishing (Jay, not me), go our for drinks after work (that would be me!), whatever it is we were always doing something. We had a decent amount of friends that we loved spending time with. Some were closer friends than others but never the less they were still our friends. Friends we though we would have for a life time. Then Molly came along. All of our priorities changed like they would with any child. Except, she consumed much more of our time. We would go to work and dash out of there when it was time to go to rush to the hospital to spend as much time as our very sick baby as we could before we had to go home and do it all over again the next day. While we were in the hospital we weren't thinking about what our friends were doing because we only had one thing on our mind...getting our daughter well enough to come home. Then we were discharged and our life became even more crazy. We were basically housebound with the exception of doctors appointments and hospital visits. As time went on and Molly became more stable and a lot more healthy we were able to take a breath and look around for the first time in a few years and realized "hey, where did everyone go?". The texts and Facebook messages and emails became fewer then eventually stopped, with the exception of the only true friends we ever had. We don't go to the movies anymore, unless it's one that Molly would go to. We don't go out to dinner anymore. I haven't seen the inside of a bar in about 5 years...even if I did I'd probably fall asleep after one drink. Jay's fishing trips are almost non-existent and now when we go to Target, our shopping cart is 90% stuff for Molly. While all of this is OK it becomes a lonely life. I am beyond thrilled to have the few friends I do have but it still makes me sad at times that everyone else moved on without us...all because we were fighting for our daughter's life then to keep her healthy. I'm not sure if it's because they can't relate to us anymore or what. But now that Molly's back in school I have been talking to some of the other mom's while we are waiting to pick our kids up. I think they are curious about Molly and that is probably why they started talking to me and that's OK. I don't mind sharing her story. It makes me feel better to let them know why she is delayed so they're not just guessing why. One mom in particular invited us over for a play date. I hate that term, play date. What ever happened to just asking if Molly could come over and play? Either way...I accepted. It would be great to start making some new friends. Friends that don't care that my kid spent much of her life in and out of a hospital and accept her for who she is and the amazing little girl that she is becoming. I don't want Molly to be treated differently because I feel like when she is being treated differently I am too and it's not a fun feeling. So by this mom asking if we wanted to come over it made me feel accepted once again. I am not a huggy person but I kinda wanted to hug her for asking me!

This is only a smidge of what we go through as a heart parent but this is the stuff that we can deal with!

Thank you for listening to my rant : )

Kerry

Thank you, 2013!

This year has been full of highs and lows, just like anyone else’s life I’m sure. Lucky for us the highs outweigh the lows. We thought we were going to escape another year without a hospital admission but that wasn’t the case. However, Molly recovered quickly and handled everything better than I did. We also made another trip to the OR. We have yet to have a year where Molly didn’t end up in the operating room. We are hoping that 2014 will be the year! Molly was also diagnosed with A Pattern Esotropia which is an eye condition and requires her to wear glasses. Luckily, the glasses help and we were able to avoid a surgery…at least in the immediate future. We lost our little friend, Miracle Ryker, who was also born with Heterotaxy Syndrome. Though his time here was short he touched our lives and his passing affected us deeply. We hope that his mom & dad, Rachel and Jason, find comfort in there 4 other kids in the new year! 

With the bad comes the good. We celebrated Molly’s 3^rd birthday in May! She wasn’t really having it and wasn’t in a great mood but we still made the best of it. It’s a celebration of more than just her birthday but a celebration of her life and all that she has overcome! She truly is a miracle. She also transitioned out of Early Intervention and into outpatient therapy in May. I was very excited about this change and it turns out I had a good reason to be. Molly has made great progress since starting therapy. Her therapists love her and are so happy with all of the progress she has made. When she started therapy in June she was still crawling around.  Six months later she walks like she’s been doing it all of her life. We still struggle with speech but again she has come so far. She is saying words and her vocabulary is huge. We know she still has a lot of work to do but we are confident that she will catch up in no time!

June is my second favorite time of year because that is when we participate in the NStar walk for Boston Children’s Hospital. This year we raised $6500!!!!!! We couldn’t have done it without all of the donations from our friends and family and even some strangers. The whole experience of walking for Children’s Hospital is so exciting, emotional and meaningful to us. We love that we have started this tradition with Molly and we hope she will continue to do it into her adult years. It feels great to give back and I can’t wait to do it again in 2014!

September was also an exciting month because Molly was able to have her g tube successfully removed! I really didn’t have any expectations of when it was going to come out when we had it placed but I did not think it was going to be that fast, especially because feeding was so stressful and difficult for her. But once again she overcame the odds and proved me wrong.

October! What a fun month for us as we headed on our Make A Wish trip to Disney World. This was a once in a life time experience that Jay & I will treasure forever. Sure, we will be able to go back but the experience the three of us had will never be replicated. We had the time of our lives and if you are ever looking to donate to a charity, Make A Wish is another amazing organization. They provide dreams to children with life threatening illnesses. It allows the child and their families a time away from their life to forget about doctors appointments, needles, testing, etc. It’s something we will always be grateful for and we will never forget!

We had a wonderful year and it’s all because of this little girl that has taught us so much and brought so much joy into our lives. Our lives will never be the same but they are so much better because of one little girl that was born with a broken heart and an anatomy that still keeps many scratching their heads! It is going to be tough topping this year but we are going to have a great time trying!

Happy New Year to all!

HAPPY HOLIDAYS!

I have a love hate relationship with this time of year. I love it for all of the obvious reasons…the decorations, the lights, the joy on Molly’s face when she sees a snowman or Santa (not the real thing of course), the excitement that she brings to this holiday season and most importantly that we have a happy & healthy (for the most part) 3 ½ year old to share another Christmas with.

This time of year brings back so many memories that I would rather forget about and I really try so hard to put them away but it’s a feeling that I get when I drive by the farm up the street because that’s where we were when I miscarried. I will never be able to shake the feeling that I get when I think about this time of year 4 years ago when we found out that there was something wrong with the baby’s heart. Our crazy journey started this time 4 years ago. We were on top of the world. We had tried so hard to get pregnant and here we were finding out that we were having a girl. Eight days after we found out that the baby was a girl, I received a phone call from the OBGYN telling me we had to get into Boston for a level II ultrasound ASAP. A few days before Christmas we found out that the baby did not have Down’s Syndrome but the heart defects had been confirmed. We were devastated. Now we were supposed to celebrate this Christmas and every Christmas to come remembering how we felt at that moment . The weeks and months to follow were full of doctors appointments, testing, consults, tears, stress and very little laughter.  Last night I let myself think about that time and it made me so sad. But today is a different day. I am reminded how extremely lucky we are. Molly is doing better than most people every expected. Of course she had a rough start but she will never remember any of it. She is a great kid, well behaved, very little trouble, so smart, beautiful inside and out, so funny and entertaining but most importantly she is HEALTHY and that is the greatest Christmas gift of all. I have never considered myself materialistic but gifts are no longer important to me. All that is important is the health and happiness of the person that has forever changed my life. I have said it a million times but I know our journey could’ve went a completely different way but Molly is sitting across from me, watching the same episode of Sofia the First that she has watched 50 million times this week all because of Boston Children’s Hospital, all of the doctors and nurses and surgeons. It makes me beyond happy to know that they do perform miracles and Molly is living proof. Unfortunately, there are several families that are celebrating this holiday without their little ones at home, whether they are in the hospital or have gone to heaven. I think about all of them every single day. My heart breaks for them but I hope they take comfort in everyone that they are surrounded by this holiday. Make sure you appreciate all that you receive for the holidays and don’t take one second of the season for granted!

Much Love & Happy Holidays!

                            Playing outside with her cousin this past weekend!!

                                     Molly's first Christmas spent at Children's!