Assessments and More

We had a nice little break after Early Intervention ended but all good things must come to an end. We have been very busy with preschool assessments and I'm happy that they are over. We met with PT & OT first and I really liked the PT. She made me feel good about where Molly is and the progress she has made. She gave me hope with her walking and made me feel good about where she is developmentally. She had her speech evaluation last week. I wasn't loving this woman. I was explaining my concerns about germs and she said that they take every precaution (probably not to our standards but I'll give them some credit) but nothing is guaranteed. I'm not an idiot. I wasn't suggesting that she will never get sick. I was just telling her that I'm nervous to start her in preschool because I know that she WILL get sick. I also told her I was excited for her to start with new therapists whether they are at the school our the outpatient therapy clinic because I'd like to hear some new ideas and get her on the right track for communication because this is the area we struggle and again she told me that there are no guarantees with what they are going to do. She told me that there are 3 speech therapist so I guess I need to hope she doesn't work with Molly often. Maybe it was just a wrong first impression or maybe I was just being sensitive. We will see.

Today we met for the academic assessment. My first sentence was "she doesn't speak". So she's going through and asking me all of her stupid questions...does she sit on the potty ~ no. Does she dress herself? ~ no. Does she feed herself? ~ no. Does she act different when someone is hurt? ~ no. Can she sing the alphabet? ~ yes, she can't speak but she can sing the alphabet. Can she count items in a line? ~ again....yes, she can't speak but she can count. I was getting more annoyed as the questions kept coming. It's so frustrating to sit there and have to tell them all of the things that she can't do. All of the things a typical three year old does but she doesn't do. But I typical three year old hasn't been placed on bypass twice, lived in a hospital for 8 consecutive months plus additional hospital stays, had a trach, plus everything else that she has been through. I don't know if I'm ready for her to start preschool. She's already so different from every other kid and I don't usually let it bother me until we go through stretches like this when I have to keep telling everyone over and over again how she can't speak, can't walk, etc. UGH! I just can't wait for this part to be behind us so we can enjoy the summer. I hate this for her. I hate that she is behind. After all that she's been through it's not fair that she continues to struggle. I know that she doesn't care and she's happy as long as she has her TV, ipad and Oreos but it kills me sometimes.

We have another assessment on Thursday and that's for the outpatient rehab. Unless they suggest more therapies she will see speech and PT once a week.

She has been taking a few steps on her own. Nothing consistent and she only does it when we feels like it but she is finally doing it. She stands all by herself now too and she does that really well. She's steady on her feet. We have an appointment for her 3 year check up next week and I'm going to have the pediatrician write a referral to see her orthopedic doctor and most likely get fitted for braces. She definitely needs the support at least in her left leg if not both. So hopefully we'll get in to see him sooner rather than later.

I made her appointment for the cardiologist. Her next appointment is going to be September 10. I wanted her to be seen before we go to FL just to make sure she's in tip top shape. So I will stress from now until September 9th.

I almost forgot! This is the most important thing! For the past year and a half or so we have struggled with sleep. Which I know isn't a secret because I've complained about it enough. We have tried everything. We have changed her medications around, did the whole Melatonin thing. You name it, we tried it. Well, on Molly's 3rd birthday we stopped her Levothyroxine which is her thyroid medication. A few days after we stopped it, what do you know! She slept through the night. One night...two nights...one week and now we are on two weeks. Once in awhile she'll wake up for a minute but I just rock her and she goes right back to sleep. We haven't had a middle of the night, screaming wake up, up for 3 hours since we stopped the thyroid medication. We don't know if this is the answer and we suspected this could have something to do with it because one of the side effects is sleep problems. We thought of this awhile ago and switched her dose from night to morning but that didn't do the trick. So hopefully this was the answer. I feel like a whole new person. I will never ever take sleep for granted. Since she has been sleeping so well she has been in a great mood every day and doesn't fight me to eat or take her meds. It has been great. I hope it stays this way. Life is definitely more pleasant when the females in the house are well rested! I hope that Molly isn't going to make me eat my words. I didn't even want to say anything but I figured enough time has passed.

There is a little over 2 weeks left before the NStar Walk so if you are interested in donating please click the link below. I can't thank everyone enough for donating to the walk and always supporting us. And of course thank you so much to everyone who is walking with us. We couldn't have done this without you. You mean everything to us!

NStar Walk Donation Page

As always, thank you for checking on my favorite person! Have a wonderful but safe Memorial Day weekend!