We should be used to change by now but I don't do well with change. I like to have a routine and stick to it. Once Molly turns three that means no more Early Intervention...woo hoo!!! It will be the first time in 3 years that we won't have people coming into our house every week. May 1st is her last day with Early Intervention but before that can happen we have a lot going on in the meantime. On April 22nd Molly will have her first of 3 assessments for the public school system. This will be her PT/OT evaluation. I haven't heard when her other two will be but it has to be done before her birthday. We also have to have an IEP meeting. But I'm not going to stress about it because I don't care if she starts her therapies right away. It will be nice to have a little bit of a break. On Thursdays we have EI at the library. I don't know if they have already checked out because we are nearing the end or what but Molly did some puzzles for about 15 minutes and she spent the last 45 minutes standing at the computer playing a game. I expressed my concerns about her communication delay. We have talked about it before but I guess I just needed to hear that she is making the appropriate progress one more time. She explained that because she recently started with motor immitation that that has to come first before she can start speaking. She has a few definitive words. She definitely says "ga" for "go", "OK", "again". So I'm sure her vocabulary will expand over time but I'm not a patient person. I really do try not to compare her to other kids but sometimes I find myself doing it and I hate that I do it. So after talking to her today I felt a little better. Hopefully with her therapy getting kicked into high gear next month and some fresh, new ideas those will also help. Or maybe we just need to give her whatever time she needs. We also talked about her walking and how great she is doing and how far she has come. We know we still need to work on it with her and she's not running any marathons any time soon but forward progress is what it's all about in this house. Once she starts at the outpatient rehab facility she will be fitted for another walker. The one she is currently using belongs to EI so we have to give it back and it's kind of too small now. She is getting all around now. Doing things that a "typical" two year old does and I love it. I could've done without her falling out of her seat at the kitchen table today but she didn't cry which made me get over my mild heart attack quickly. Here are some things Molly has been up to! I have also included a YouTube video of Molly on the swings for the first time this year.
Molly on the swings
At the library for Early Intervention
As most of Facebook world knows we got the call from Make a Wish this week. I never answer my home phone because 95% of the time it's the wrong number but I was rushing around and picked it up not even thinking. It was the longest 30 seconds of my life. I think she was purposely dragging it out. But ultimately she told me that they spoke to Molly's cardiologist and they were able to grant Molly a wish!!!!!!!!!!! Even now while I'm typing this I could throw up because I can't believe something is going to happen in our favor. I was so happy which made Molly happy and that's the point! It is the first time that I wanted to hug her cardiologist. I don't know what he said to make it happen and I honestly don't want to know. Make a Wish is an organization for kids with life threatening illnesses and while I know that she does in fact have a life threatening illness I try to forget about it and live our life like we have a normal, happy almost 3 year old. Once the excitement wore off, a little bit of sadness set in because I was once again reminded that she will always be considered a person with a life threatening disease. So while we are so grateful to Make A Wish and their team of volunteers it does mean that your child may not live a long and happy life. We hope with all we have but that is our reality. But we are going to take the good out of this experience. Within 2 weeks 2 Make a Wish volunteers will contact us and set up an appointment to meet with us and discuss Molly's wish which will be to go to Disney World. We know she is young and probably won't remember but what we do know is she is going to have the time of her life. She will love everything about it from the rides, to being outside and the crowds of people. We are obviously nervous about germs but we are going to take every precaution we can to keep her healthy on the plane and in the parks. We are hoping to go in October so I will keep everyone posted along our journey.
We are also in full fundraising mode for Boston Children's Hospital. We are currently in the top 5 as a team for fundraising. That is so exciting! Out of all of the teams registered to walk we are #5! I hope we can stay there!!! If you would like to help us keep our spot please click on the link to donate. If you would like to join Team Molly Moo for a great life experience and a day of feeling great about yourself and what you have done for an amazing place please join us on June 9th!
NStar Walk Donation Page
As always, thank you for checking in on Molly and supporting us!!
Kerry
I am so unbelievably happy for you getting your wish granted. Molly deserves this experience and you deserve to share it with her. I wish we could meet you there!
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