She had the best birthday. It couldn't have gone any better. We were nervous about the weather the entire week leading up to it because we planned to have it outside. The weather cooperated for the most part. It was such a great day just watching her run around and play, interacting with everyone that talked to her. Just another reason why I am proud to be her mom. She received so many wonderful gifts and she loves them all!!! She has already mastered some of the educational toys that she received. We got her a puzzle where you match the word to the picture and she can do every single one...such a smart cookie! We worked on singing "Happy Birthday" to her the whole week leading up to it because she was traumatized by that song from a birthday party we went to at Chuck E Cheese. Luckily she let us sing it...about 30 times. I would've sang it 300 times if that's what she wanted. I wish I could go back 4 years and tell myself then what her life would be like in 4 years. It would have made our journey so much easier knowing how our life would have turned out. I probably wouldn't have believed it. I want to thank everyone that had a part in this special day, whether you came to her party, wished her a happy birthday or sent her a gift. I can't tell you how happy it makes us to have people still care after all of this time!
We didn't have time to catch our breath from her birthday party and we were back to appointments, therapy and every day life. She had an Endocrine appointment that following Friday. I was hoping that it would be our final appointment but you just never know with this girl. For once I was right. The endocrinologist said there was no reason to go back so that she can tell me she looks great. The hope is that her thyroid had taken a beating from how sick she was in the beginning of her life and her thyroid levels were effected by a drug she was on for her heart called Amiodarone. She has been stable and Amiodarone free for a very long time, her thyroid levels have been great for a few years and we were discharged from Endocrine. She did have to have labs pulled just to be sure but they don't effect her at all. She was chatting about the animals on the walls while they were looking for a vein, which is no easy task. They took the blood and she was still talking about the lion and the elephant. She will have to have her thyroid levels checked once a year but that can be done by her pediatrician.
The following Monday we had an appointment with ophthalmology. I dread this appointment almost as much as I dread cardiology. Maybe it's because I don't know much about the eye and with her heart I know what to look for. Maybe I'm just waiting for them to tell me that she is going to need surgery. Maybe it's because the doctor speaks so matter of factly and like it's not a big deal. I hate that! We found out that she has pretty close to perfect vision with her glasses on. One of her eyes is slightly worse than the other but her vision is 20/25. With the good always...ALWAYS...comes the not so good. The glasses have over corrected her eye and now it turns out slightly with her glasses on. When she has them off it turns in. She may need a weaker pair of glasses to help correct it. I'll take the weaker glasses over surgery any day! We are going to give it another 4 months then we are back for another visit and she will have her eyes dialated. Luckily this doesn't bother her either. There isn't much really that does. She loves going to the doctor. In fact, every time we get on the highway she asks if we are going to visit Dr. Rhodes, her cardiologist. She always needs to know where we are going when we get in the car and when I tell her we are going to the doctor she's thrilled...total opposite of me and almost every other person on the planet. I guess it's just where she feels comfortable. Unfortunately for her I am not hanging out in doctors offices to make her happy.
We have another appointment a week from today. This one is bright and early next Monday morning in Boston. It is with EP to discuss the long term plan for that little pacemaker of hers. I have about a million questions before we make a decision on what we are going to do. Right now we don't want it out. Unless this doctor can talk a good game and convince me it's the right thing to do I say keep it in! The reality of it is, it's a foreign object in her body and is an infection risk. We are concerned that if they take it out, that is when she will need it. Maybe it's just stuck in the CICU mind set. We have to get over it at some point. Or do we? That way have thinking has got us this far. I'm very nervous about this appointment and I'm trying not to think about it. I don't like being forced to make these decisions. Especially when it's not cut and dry. I don't like making decisions about elective procedures. I will update after her appointment.
We also had an appointment with orthopedic regarding her braces. He would like to see how she does out of them once school is out. So in July we will transition her from her braces to high top sneakers. Her ankles are still weak and that may just be how she will always be. She has fallen arches and we aren't sure if they are going to develop. If that is the case we will discuss long term plans in August. She is definitely more stable in them and walks completely different when she doesn't wear them so only time will tell...like always.
Overall everyone is thrilled with Molly and all of her progress from head to toe...literally. Ultimately the only important things that matter is that she is happy and healthy. She is such a joy to be around and brings so much happiness, perspective and hope to everyone that interacts with her. We are the proudest parents and couldn't have asked for a happier, more courageous little girl!
We are gearing up for the NStar Walk benefiting Boston Children's Hospital. We have less than a month to achieve our goal of $6500 and we are only 44% of the way there. It really doesn't matter if we meet the goal because any amount helps and that makes us so happy to be able to give them what they need since they have given us what we need. If you would like to help us get any closer to our goal you can click here and donate! We are incredibly grateful to everyone that has donated, wished us well or volunteered to walk. We love each and every person that has supported us on this journey and we will never be able to thank you enough for your kind words and donations!
NStar Walk Donations
Life is short so make the most of it. Don't take one second of your time with your kids for granted. There are so many people in our lives that would give anything to have their little ones back with them...even if only for a day.
Kerry
