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 3rd
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!
