Catching up...

It's been awhile since I've updated and so much has been going on I'm not sure if I can remember it all...partly because I'm so sleep deprived so I guess I'll start there. Molly used to be the best sleeper and it makes me so sad (and so tired) that she is the total opposite now. We have tried everything to get her to sleep through the night again. Jay keeps telling me to hold her nap during the day but I guess for selfish reasons I didn't want to give up that hour and a half that I had to myself. But I did it and she was sleeping through the night. She did it for 3 nights in a row. Even though she was sleeping through the night I was not. I keep waiting for her to wake up. Last night she fell asleep at 6p, woke up a few times but went right back to sleep. Then 10p rolled around and she was up until 2a. She woke up again at 5:15a and I had to wake her up for the day at 7 because she had a doctors appointment. So we are all pretty tired today. I guess there's no answer and I've given up on sleep all together.

On September 9 Burlington had Municipal Day. The man that ran the even purchased a 40" flat screen TV and we raffled it off. All of the proceeds went to the Miles for Miracles marathon that Kristin Barber (the nurse that's running the marathon) is running. We ended up raising $1700 and we had a great time doing it. Molly was like a local celebrity. I was so happy to be able to do this. Any time we can give back to Children's Hospital makes us so happy.

My dad's work had company day at Canobie Lake and we went with him and my mother. We just never know how she's going to be. We have tried carnival rides before and she didn't like them but this day she loved them. It made me so happy to see her on a carnival ride like other kids her age. Of course we were careful. I had the Purell ready as Jay took her off of the ride. She had the best time and I think this day might be my favorite memory yet.

The following day was a reception for the Miracle Makers of the Nstar Walk that we did back in June for Children's Hospital Boston. Because Jay & I each raised over $750 and Molly raised over $500 we were invited to attend. It was at an apple orchard where they provided lunch, tshirts and of course apple picking. Did we have a great time? Umm...no. Molly was miserable the entire day. She did a complete 180 from the previous day. What we didn't know was it was the beginning of a very long week. She ended up with a stuffy nose and a cough. We were watching her temperature, O2 sats and her appetite. She never developed a fever and her O2 always stayed at 100%. She was always at the back of her mouth so we're not sure if it was a cold, her teeth or a combination of both. She missed early intervention all week and I had to cancel her play group for the week but she should be good to go this week.

We were also notified that Molly doesn't qualify for Synagis this year which isn't great news. We try so hard to prevent her from getting sick and the thought of her getting RSV scares us so much. I spoke to the pediatrician's office yesterday and they are going to try to get it approved through her secondary insurance but they told me they have never been able to get Synagis approved through Mass Health. If they don't approve it they will appeal it through our primary insurance and we'll have to pay the deductible which is $2,000 but each shot is $1,500 and she gets 5 of them in a season. If they don't approve the appeal then it will be a very long winter of me and Molly sitting in the house with no outside contact with germy, booger people. We have come too far to risk an admission now.

That brings us to today. Molly had a routine cardiology visit. She hadn't been seen since April and hasn't had an echo and EKG since January. The further apart the visits, the more nervous I get. I don't know why because it was drilled into us to always "look at the patient" and to look at her she looks fantastic. Nice and pink, growing, breathing perfect, etc. But I'm so afraid our luck is going to run out which is why I dread this appointment, well that and we are so afraid she's going to lose her sh*t and make it a very long appointment. We haven't been giving her the iPad so we can use it today and she would be happy to see it. Although we almost didn't have an iPad because Molly dropped it on the floor and smashed the glass. Jay took it to the Apple store and they gave us a new one for nothing..Phew! Close call! Back to the cardiology appoinment. The nurse knows us and knows us well. She came out to the waiting room and asked if we thought it was a good idea to do the echo first and we said yes. If she got weighed first it would've been over. She was fantastic through the echo, laughing and making noises, resting her feet on the echo techs leg like she was at home. She said that Molly is one of her most challenging patients to get images on because of how "different" her heart is. She was able to get the images pretty quick. The cardiologist came in to listen to her which she was happy and he said that she sounded great. She looked fantastic and no one ever would've thought this would've been the outcome for Molly. As much as I don't like the cardiology visits I do like getting his opinion because he has seen her on some pretty horrible days. It's just nice to hear how great she looks now. The EKG tech couldn't believe how great she looks and how big she's getting. Everyone in the office kept saying that she was like a different kid now. The cardiologist went over her echo. The pressures in her heart are normal. The function is great. Her heart is nice and strong. There is still mild leaking in the mitral valve and some mild narrowing. He said the narrowing is nothing to be concerned with right now but we are going to have to keep an eye on that valve. It is growing with her and the function is is fine. He thinks we will get her childhood out of that valve and who knows beyond that. No one knows what the future holds for that valve. It may not need any work but we're not going to worry about it right now. Just put it in the back of our minds with everything else we have to worry about. He was very happy with her and all of her progress which makes us happy. We have to go back in 6 months for another visit and a pacemaker check. So I have 5 months of no worrying about a cardiology visit.

I think I've covered everything for now. Thank you for continuing to care!

Kerry