One thing has always been true about Molly and that is that she always keeps things interesting. We had an appointment with Endocrine last week. The day before we went she had to have labs pulled to make sure she was tolerating being off of her thyroid medication. We had stopped it back in May. The only visible change since stopping it was that she was sleeping through the night. Her thyroid level was a little elevated since coming off the medication. It's on the high end of normal. If it goes much higher we will assume that she has a mild case of hypothyroidism and she will be put back on medication.
Next up is GI for Molly's g tube removal. We met with her GI doctor who hasn't seen her in a year. He gave us 3 options when it came to removing her g tube. The first one is to yank it out. He hates doing it that way and it's painful but that was an option. The benefit to that is there isn't any anesthesia involved. Another option is to put her under anesthesia, intubate her, go in and snip the inside, cauterize the site and put a few clips on the inside and hope it closes on it's own. Otherwise it's another trip to the OR. Another option is to just have it closed up while she's in there. That means she will be under anesthesia longer and it's another surgeon that would be involved. He thinks it will close on it's own so that's the route we are going to go. It is a very quick procedure but it doesn't make it any less risky. It doesn't make us worry any less. Yes, this trip to the OR is for a good reason but we are still scared. Any time she is under anesthesia it is risky. Who wants to hand there kid over for surgery no matter how simple the surgery is? No one I know. We know she will be OK but it never gets easier. He told us to expect to spend the night because she's cardiac and her medical history but if she handles everything fine we would be able to go home that day. So surgery is next Friday, Sept. 6th.
We met with Molly's preschool teacher and aide today. Not a big fan of either. I'm not sure if it's because I just don't want her to go to preschool, if I'm just being judgemental or if I really don't like them. She won't be in the classroom very much. Class is only 2 1/2 hours/ day and she will be in therapy for an hour & a half. So I guess we'll see what happens. Her first day is supposed to be next Wednesday unless her preop appointment falls on that day.
Other than that therapy is going great. She loves pool therapy and speech therapy is going really well too. It takes us about 20 minutes to get back to the car because she stops and says bye to everyone we pass. She got used to wearing the braces really quick and doesn't mind them at all. She hasn't crawled in over 2 weeks so I guess it's safe to say she is officially a "walker"!!!!!!!!!!!!
I will fill you in on her first day of school (and who cried more) as well as her surgery. Have a safe and happy Labor Day weekend!
~Kerry
This is the story of a brave little lady that started her life in a unique way. Her courageous start has paved the way for her to touch the lives of wonderful and supportive people and do amazing things with her life!
Wednesday, August 28, 2013
Thursday, August 8, 2013
More good news!
During Molly's speech therapy last week her receptive language was tested. I knew that she did well but I did not think she did as well as she did. Three year olds are expected to score between 85-131 and she scored a 98!!!!!!!!!! It is the first time in her life that she has been on target for any developmental milestones and I wanted to jump for joy when she told me the results. Her therapist was also very excited. She said that each week she is making such great progress and she is so happy with where she is and everything that she is doing. I'm sure it's rewarding for her too to see her hard work paying off. Some of the things that she is struggling with are age appropriate and other things are just because she is so delayed but she is making such great progress and it makes us so happy. Especially because we were on a long stretch of having no good news to report in the beginning of her life. It's so great to finally have only good news to tell!
She received her orthodics yesterday. We start off with using them for one hour. If that goes well we bump it to two hours and so on. We put them on her last night and she didn't even care. We took her outside and she was walking long distances without falling...even walking in the grass without falling. Today she wore them for a few hours while we were at therapy. Her PT was very happy with the way she looked in them. She was standing better, her steps were stable and not wobbly. She looks fantastic. She almost never crawls anymore. If she starts to crawl and we tell her to stand up she does it and walks the rest of the way.
27 more days until preschool :(
She received her orthodics yesterday. We start off with using them for one hour. If that goes well we bump it to two hours and so on. We put them on her last night and she didn't even care. We took her outside and she was walking long distances without falling...even walking in the grass without falling. Today she wore them for a few hours while we were at therapy. Her PT was very happy with the way she looked in them. She was standing better, her steps were stable and not wobbly. She looks fantastic. She almost never crawls anymore. If she starts to crawl and we tell her to stand up she does it and walks the rest of the way.
27 more days until preschool :(
Thursday, August 1, 2013
Best Therapy Appointment in 3 Years!
We have been going to Northeast Rehab in Salem, NH since May of this year. I can't say enough great things about this place. Molly has made great strides since starting here and it makes me so happy! This is all I have wanted for her from the beginning. I kick myself every day that I didn't pull her from Early Intervention and start her here sooner. But it is what it is and she's there now.
Wednesday's is pool therapy and now that she remembered that she likes the water she is great. Yesterday she was dunking her head under the water and completely submerging herself. The therapist kept telling her to stop but in Molly's head that means to keep going. So every so often she would do it. I know the therapist told her not to do it but it made me so happy to see her doing it and not being afraid. It was very productive and she didn't want to leave. After she was done the therapist was bringing her over to me and let her go about 20 steps from me and Molly walked the entire way by herself. Thursdays is speech and PT. While we were waiting for speech I was talking to another mom and she was asking me about Molly's history and delays so I was giving her the very brief summary. I told her how I left my job so I could take care of her and she had done the same for her daughter. We were saying while it does get lonely at times and we have little adult interaction it's so rewarding and today was a reminder of why I gave up my job. To witness moments like these. Her speech therapist wanted to work on her receptive language and I just knew she was going to do great. It's all up there, we just have to work on getting it out. She started off with 4 pictures on a page. They were easy words...baby, ball, etc. And she was getting them all right. As the pages went on the words got tougher and she never missed a beat until we started getting into the 5, 6 year old words. She would get one or two wrong here and there but she was also getting words right that I didn't even know that she knew. At one point she asked Molly to point to the "money" and she thought she said "mommy" and she pointed to me. I wanted to scoop her up and hug her right there. Last night was the first night that Jay asked where "mama" was and she pointed to me. I know it may not seem like a big deal but when you don't know if your 3 year old knows what to call you it's kind of sad but when she finally does it it's so rewarding! Anyway, back to therapy. We stopped at age 7 because that's when she started getting all of the words wrong but I couldn't have been happier! My smart cookie...not that there was ever any doubt! I won't have the official scores back until next week but I'm looking forward to seeing what they are. Her speech therapist said that she can see her progress every week and she's so happy with her. She also said that she's her favorite patient because she has the attitude of a 16 year old in the body of a 3 year old.
PT was equally successful. She was walking all by herself all around the room and she looked great doing it. She was walking up the stairs of the slide and going down the slide, bending down and picking things up and standing back up. The PT was so excited with her progress too. Everyone is thrilled with how far she has come in 2 1/2 months. It really does take a lot to get me excited but today was definitely a day where I could've cried with how happy I was for her. She really is so amazing and never gives up!
Some people may feel sorry for us because of the hand we were dealt but I couldn't be happier. We have the most rewarding life and I wouldn't change one thing about it!
Wednesday's is pool therapy and now that she remembered that she likes the water she is great. Yesterday she was dunking her head under the water and completely submerging herself. The therapist kept telling her to stop but in Molly's head that means to keep going. So every so often she would do it. I know the therapist told her not to do it but it made me so happy to see her doing it and not being afraid. It was very productive and she didn't want to leave. After she was done the therapist was bringing her over to me and let her go about 20 steps from me and Molly walked the entire way by herself. Thursdays is speech and PT. While we were waiting for speech I was talking to another mom and she was asking me about Molly's history and delays so I was giving her the very brief summary. I told her how I left my job so I could take care of her and she had done the same for her daughter. We were saying while it does get lonely at times and we have little adult interaction it's so rewarding and today was a reminder of why I gave up my job. To witness moments like these. Her speech therapist wanted to work on her receptive language and I just knew she was going to do great. It's all up there, we just have to work on getting it out. She started off with 4 pictures on a page. They were easy words...baby, ball, etc. And she was getting them all right. As the pages went on the words got tougher and she never missed a beat until we started getting into the 5, 6 year old words. She would get one or two wrong here and there but she was also getting words right that I didn't even know that she knew. At one point she asked Molly to point to the "money" and she thought she said "mommy" and she pointed to me. I wanted to scoop her up and hug her right there. Last night was the first night that Jay asked where "mama" was and she pointed to me. I know it may not seem like a big deal but when you don't know if your 3 year old knows what to call you it's kind of sad but when she finally does it it's so rewarding! Anyway, back to therapy. We stopped at age 7 because that's when she started getting all of the words wrong but I couldn't have been happier! My smart cookie...not that there was ever any doubt! I won't have the official scores back until next week but I'm looking forward to seeing what they are. Her speech therapist said that she can see her progress every week and she's so happy with her. She also said that she's her favorite patient because she has the attitude of a 16 year old in the body of a 3 year old.
PT was equally successful. She was walking all by herself all around the room and she looked great doing it. She was walking up the stairs of the slide and going down the slide, bending down and picking things up and standing back up. The PT was so excited with her progress too. Everyone is thrilled with how far she has come in 2 1/2 months. It really does take a lot to get me excited but today was definitely a day where I could've cried with how happy I was for her. She really is so amazing and never gives up!
Some people may feel sorry for us because of the hand we were dealt but I couldn't be happier. We have the most rewarding life and I wouldn't change one thing about it!
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