Monday, March 31, 2014

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 : (


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