Sunday, March 15, 2015

Good Busy!

Molly is a pretty busy little lady. She doesn't have a whole lot of extra time to do fun things. Although I guess school and therapy is fun for her. I just don't know how long this lifestyle is going to continue to be fun for her. I'm not going to lie. I worry about her growing up and resenting me for never finding the time to do dance or gymnastics, music lessons or any other fun thing a kid her age does. I just always hope that she knows I made these choices because I think it's what is best for her. I keep telling the moms at therapy that I think she needs a break...we need a break. She has some for of therapy every week, usually multiple times a week since we brought her home from the hospital at 8 months old. She used to love going to therapy but most days now when we are driving there she says "all done Christine and Heather". So badly I want to say we are taking a month off but I don't want her to regress. She is making such great progress and I can't take the risk. Once she's there she's fine and has so much fun. I think it just becomes too much at times. By the time Thursday rolls around we are at the end of the week and she has 2 hours worth of therapy and she's spent and so am I. Aside from being "all done" she is doing great. Her therapists are so happy with her progress. I see more than they do for obvious reasons. She reaches her goals every week with PT. We are now working on putting 4 word sentences together in speech and making her existing words more clear. She tends to leave the last letter off of some words. She is also doing pretty good in OT. We are working on her pencil grasp, midline crossing and strengthening her left hand. She can dress herself and her self feeding has really improved. On the way to school or therapy we always play a game in the car. The other day I went through the alphabet and she had to give me one word that began with each letter and she did it. She even gave me words that weren't the basic word you would give. I thought when I got to Q she would have said "queen" but she said "quail". We are so proud of how far she has come and how smart she is. I know most of this is stuff she should have done already but it's stuff we didn't know if she would ever do. 

She has also developed an attitude. I don't know where it came from (ah-hem). She likes to yell at us now whens he doesn't get her away. Stomps her feet and repeats "no". Throws things when she doesn't get her way. We were at the grocery store today and she wasn't listening so I told her she was going to have to sit in the shopping cart and she screams "No Way Jose". I wanted to laugh but at the same time I wanted to climb in a hole. It does make me happy to see her doing typical kid things but she also makes me want to pull my hair out by the end of most days. My sweet girl is slipping away and turing into a 15 year old teenager. I hope it's a phase and she will come back around. She is pretty well behaved for the most part. 

She had a follow up appointment with the eye doctor to make sure her glasses are working....again! And they are working for now. The doctor said that she wouldn't do anything now but that's not to say she'll never need surgery. All we can do is keep hoping the glasses do the trick!

We have put her anxiety to the test lately. We went to see Frozen on Ice. I was pretty nervous that she wasn't going to tolerate it. Her psychiatrist keeps telling us to talk about it ahead of time. That isn't working. She stresses about it so much by the time we get to where ever we are going. So I tried not telling her or being vague about where we are going (because she always wants to know where we are going). And this time I think it worked. She had the time of her life! 

We also went to the mall which is always a no-go for her. We usually walk in, get her glasses fixed and walk out. This time I went in down the opposite end of the mall and went into Build A Bear. She was OK once we walked in and she saw that it was OK. We built a bear for my aunt that was having surgery. Then we went to have her glasses fixed (this time I broke them...oops). On the way back we had her ears pierced. It's something we have wanted to do for a long time. Obviously we couldn't do it when she was born. I asked her before I did it if she wanted earrings and she said yes so we did it. She cried for a second and hasn't bothered with them since then!
We went to a birthday party at Jay's cousin's house. A place she had never been to. We had no idea how she would react when Anna & Elsa walked in but she was in her glory and had a blast!
Today we went to a Chuck E Cheese like birthday party. I made the mistake of telling her ahead of time and showing her the place online. She kept saying "all gone Mouse" because she thought we were going to Chuck E Cheese. She obsessed about it the whole way there but once we stepped inside her anxiety went out the window and she had so much fun.



Some times I just stare at her in amazement at how far she has come and think about how literally unbelievable she is. I hope she always knows how amazing she is.

Each year we usually do the NStar Walk for Boston Children's Hospital. This year we have decided to do something different. My friends are helping me to do something I've wanted to do for a few years. Books are a huge part of Molly's life. They always have been. She would rather read a book than play with a toy. So in honor of Molly's 5th Birthday (holy smokes I can't even believe she's going to be 5 in less than 2 months) we are having a book drive for the kids recovering in the CICU at Boston Children's Hospital. I remember how a small gesture could turn a dark day around when we were in there and if Molly's story and a small gift can brighten someone's day and give them some hope then that would make my day complete. We are also collecting gift cards ($5, $10 or any amount really) for the nurses. We are putting together goodie bags as a thank for all that they have done for Molly and every other kid that rolls through those doors. Our goal is to get 50 gift cards. If you would like to help and brighten someone's day please email me or send me a Facebook message for my address. My email is kleary923@gmail.com.

I hope everyone has stayed healthy this winter! 

Much love,
The Leary's

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