Lots of Progress and Changes

Molly has been making lots of steps in the right direction...literally! She started pulling herself up to standing but couldn't figure out how to get herself down. She would look at us and yell at us to get up and sit her down. Well, she figured out how to sit herself down which gives me a little more free time since most of my day was consumed by sitting her down. She has also started walking while holding on to the crib, TV stand, furniture and anything else that she can stand up on. She also likes to stand up and hold my hands and walk towards me. She is showing so much interest in walking. This week during our early intervention session the therapist brought a pair of braces that she borrowed from another family so we could try them out. After disinfecting them we tried them on. She had a harder time pulling herself up and standing in them then she did in a pair of shoes. When she has shoes on she stands perfectly fine. When she doesn't have shoes on she still turns her foot in but it gets better every day. Early Intervention feels that she may not need braces but I think I'm still going to get her checked out by Orthopedic...what the heck, we haven't seen them in awhile.

She has also added another phrase to her vocabulary. She says "all gone". It's a nice change from her bossy "go" that she uses way too frequently. Once in awhile she will also say "goo ga" for "good girl" but she has to be in a great mood for that to happen. She gets her point across, lets us know what she wants and definitely lets us know when she wants it. She likes to be clapped for. Even if you're clapping and it's not for her she still thinks it is and is so happy.

We had an appointment in Boston today for Growth & Nutrition and with EP for a pacemaker check. We got there early so we went up to the cardiology clinic to get her pacemaker checked. They were just checking the battery, see what her heart rate is if they turn it off, she was her rhythm is. Her pacemaker is set to 120. She can go above it but she can't go below it. Usually if she gets mad it will go up like anyones heart rate. When she was in the hospital we could tell when she was getting a fever because her heart rate would go above 120, of course that hasn't happened in a long time (knock on wood). When we had our cardiology appointment back in Sept we asked about her heart rate and he said it was an OK rate for someone her age. Well, the EP nurse told me it's way too high for someone her age and she wanted to turn it down. I told her I wasn't comfortable with it and it makes me nervous so we agreed to turn it down to 110. She said she was going to talk to the doctor and after our Growth & Nutrition appointment she wanted me to give her a call which I did and she wanted to see us back in the office to talk to me. So after our appointment we went back to the cardiology clinic. She said she spoke to the EP attending and Molly's cardiologist and they felt a good rate for her was 90. I wasn't comfortable with 110 so I definitely wasn't comfortable with 90. When we went back down a 2nd time Molly was happier so we were able to see that her own heart rate was 107. Without getting all technical the type of rhythm she has makes us nervous because when she was sick she wouldn't tolerate it. I guess we also have a hard time remembering that she isn't that same sick kid. She really should be fine with a heart rate of 90 and she probably won't get that low but I probably won't sleep tonight, which really isn't any different from any other night because Molly doesn't like to sleep! They turned the rate down around 2pm and so far she has been fine. The nurse told me not to be nervous and that Molly would be fine. Don't be nervous?! She said that she was glad that only one of us was there today because I kept telling her I didn't like it and why I didn't like it. She said she remembered Jay from when Molly was inpatient and she was happy to not have to deal with both of us. I'm not half as bad as Jay is so she's lucky he's on vacation :)

 

Waiting for EP and trying to get away from Nana

Next up, Growth & Nutrition. I'm usually not really interested in this appointment. I never gain anything from it and I don't think we need it but today I was kind of anxious to get there to have her weighed and measured. Endocrine had made me nervous about her not growing. She looked a little bigger to me and she definitely feels heavier so I just needed that confirmation. This is only the 2nd time that she has been weighed and hasn't cried. I guess she was tired from screaming during EP. She weighs 24 lbs 4 oz and is 33"!!!!!!!! I can't remember how much she weighed the last time but that is an increase and that is a 2" growth in 2 months. I'm so happy with that. She is still gaining weight even though we stopped her g tube feeds which is also great news. She's barely on the chart for height but she is in the 38th percentile for weight for height which means she's proportionate. We discussed her feeding and fluid intake by mouth and they are so happy with her. She is eating and drinking enough. We are going to start weaning her Omperazole (Prilosec). She currently gets 2 doses per day. We are going to cut back to once a day for a few weeks. Then we will go down to every other day for a week and then we can stop it. That will leave us with only 3 meds!!! We don't have to go back until March which is the longest we have gone in between these appointments. When we go back in March that will be our last appointment with Growth & Nutrition. Yay, Molly!!

 

Waiting for Growth & Nutrition with her iPad

After our 2 appointments we went over to the CICU to say hi to our friends (doctors and nurses). They are so happy to see how far she has come, see how big she is, see all of the wonderful things she is doing, see her meeting milestones and just being a normal kid (cautiously and with lots of hand sanitizer of course). The nurse practioner asked if she could take a picture of Molly because they have a family who is considering a trach for their kid and she wanted to show them how great she looks now. Two years ago I could only dream that she would be doing this well. It makes me so proud to be her mother. She is going to do great things and I couldn't be happier to be along for the ride.

Now if she would just sleep...