Happy Thanksgiving!

It’s hard to remember what you are thankful for on a daily basis but I have a constant reminder of what I am thankful for. I live with her every single day and never take one of those days for granted. But it took a whole army of people to get her here and I’m so thankful for the following.

Children’s Hospital Boston is ranked #1 in most departments, including cardiology. I think Molly helped them put them there J They perform miracles every day. People come from all over the world to get the best care possible from this hospital. We are so lucky to live 40 minutes away. She was able to have the best cardiac surgeon for her. I wish I could tell Dr. Emani every single day how much we appreciate him and what he did for us, for Molly. I hope we never need his services again but if we do I wouldn’t want anyone else to take her heart in their hands.  We were also lucky enough to be able to give back to them twice this year by doing the Nstar Walk and the Patient Partner. This year we helped raise $7200 for Children’s Hospital because of the generosity of our friends and family. It seems like such a small price to pay for saving Molly’s life but we couldn’t be happier. As much as I hate driving down the highway, walking up the walk way, entering the lobby, riding the elevator and going to the appointment inside that building it’s also the only place that I feel accepted and appreciated for all of the work we have done with Molly. It is just such an amazing place and we are so grateful to have them in our lives. For Children’s Hospital we are so thankful.

It’s always a popular thing when someone is sick. Everyone visits, calls, emails or texts to find out how the sick person is doing. Once they start to get better the people stop coming, the phone calls, emails and text become further apart until they eventually stop and people stop checking in. But then there are the few that continue to visit all the time. They still read Molly’s blog or comment on her pictures or status or just send a quick text. Most people we have never met but feel like we have known our whole lives. For all of you that continue to follow and love Molly we are so thankful and I hope you all know how much we appreciate you.

Jay and I have been married for 8 years…YIKES! When we said “through good times and bad” I didn’t know the good and bad were going to be tested so early on in our marriage but we made it through and we made it through stronger than before. We are far from perfect. We are both the most stubborn…STUBBORN people you could ever meet. We could argue about the color of the sky or if dinosaurs every really existed (I say no). But one thing is always the same and that is Molly’s best interest. From day one of Molly’s diagnosis we had to make some pretty tough decisions…the termination of the pregnancy, how we were going to proceed, getting second opinions…the list goes on and on. And from that day on we have always been on the same page which has made it EASIER to get to where we are today. Our life is slowly getting back into a normal pattern. We are able to live a little bit more like a family with a normal, healthy kid that won’t let anyone babysit her.  I don’t know that I would’ve made it this far in this crazy journey with anyone else so for Jay I’m thankful.

Family is so important and not always supportive but we are lucky to have some family that is always there for us. Whether they have done the walk with us, helped us to raise funds or donated, brought us a coffee, visited from out of state, brag about her, ask about her, go with me to doctor’s appointments or take the dogs so we can get away for a few days. We are so thankful to have a family that cares so much!

I never wanted to be a stay at home mom. My plan was always to go back to work after I had Molly. Three weeks after I had a c-section I was back to work. And it went well for a while until Molly needed me more than my work did and I’m so happy with that decision. I was able to find another job that allows me to work from home and raise Molly. I work about 30 hours a week when I have the time to put the hours in. It’s not always easy, especially as Molly gets older but I’m so happy to be able to do it. For my job that allows me to be home and see Molly meet all of her milestones I’m thankful.

Then there is my little miss. Everyone is proud of their child, thinks they are the most beautiful, smart, amazing thing they have ever seen and I’m no different. Molly is living proof that miracles do happen. She has fought so hard from the beginning. At times, I’m sure she wanted to give up but I’m so happy that she didn’t. There has been so much sadness and loss in the CHD and Heterotaxy community this year and it really took its toll on me. I took a step back and have been in a much better place since then but those kids that lost their battle to heart disease and complications from it have taught me so much and have made me appreciate Molly so much more, if that’s even possible. She spent the majority of her first 8 months of her life paralyzed and sedated. Just over the past year alone she eats and drinks everything by mouth, she pulls herself to stand and sits herself back down, she is a TV addict, spoiled rotten, hates to sleep, loves to torture me, loves to go grocery shopping, doesn’t care about the dogs, is only on 3 meds, has grown so much , is only followed by 2 specialists (well 2 once we are discharged from Growth & Nutrition) and made us fall so much more in love with her. She is so strong, determined and stubborn. Even when she keeps me up all night, she keeps me laughing all day. She has made me so proud with all she has overcome because if I had to go through what she has gone through I would’ve given up long ago. She means everything to us and there isn’t a thing we wouldn’t do for her. I’m excited to see what the future holds for her. For Molly Renee Leary (a/k/a Molly Moo) we are so so so thankful!

Last Thanksgiving Molly was admitted to Children’s for a GI bug. I’m hoping this year will be different. We have had one admission this year for her trach site closure. Next year we are shooting for zero admissions but we’ll just take it one day at a time!

Happy Thanksgiving to all of our friends and family! Your love and support has got us this far and for all of you, once again, we are so thankful!

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...

Love her...

When Molly was in the hospital Jay and I had a great outlook on life. We had figured out what is important, what is worth fighting for, fighting about, who is important and what really mattered. The longer Molly is home, the harder it is to remember those things. We are slowly slipping back to the way we used to think. It's harder to let the stupid stuff go. It's harder to not complain about the small things but I think I got a little bit of that back today. Molly & I took a trip into Children's today to visit with some fellow heart moms. After talking with them it took me right back to where we were 2 years ago. I was able to remember that there is so much more to life than complaining about Early Intervention or having to get up in the middle of the night because Molly is having a nightmare because there was a time when I couldn't comfort her when she had a nightmare. Now if I can just remember that at 2 am :) Months would go by when I couldn't hold her because she wasn't stable enough to be moved. Now I can't even imagine not being able to pick her up when she wants me or needs me. Every night I rock her to sleep. It's a pattern that we have gotten into and it works for us. She doesn't take a nap all day so usually around 7 she starts to get tired. She will start handing me random toys and I know she's tired and is trying to fight it  by handing me a Lego or a block. So she grabs her blankie and climbs up on my lap while I hum "Row row row your boat" and she falls asleep. I carry her upstairs and put her to bed. Tonight I didn't want to put her down. I was thinking about all that she had been through and all of the times I couldn't hold her. All of the "close calls" that we had and all of the times that I thought that I would never have that moment. Good thing she's really heavy because I would've sat there all night with her. She struggles developmentally but honestly if she stayed the exact way she is right now forever I would be happy. I don't care if she doesn't walk or talk. I will carry her for as long as she needs me to. I don't care if I have to get up for her 100 times a night. She's worth it. I don't care if I have to take her to 10 different specialists. At least there are specialists to help her. There isn't a thing we wouldn't do for her. I just want to give her the best life we can while keeping her the healthiest we can keep her. Sometimes it's not easy and we have to pass on a lot of functions, parties and events but she is more important. It gets especially difficult this time of year.

Molly is doing really well. She went trick or treating and loved it. We brought her wagon because she's so heavy. Unfortunately once we took her out of it she didn't want to go back in. She's pulling herself up on everything. Her foot turns in less but it's still doing it. She is taking better steps when we walk with her. Unfortunately she's afraid of the walker now so we just walk with her while holding her hands. She is growing up so fast and getting so big and I love every second of it. We are looking forward to the holidays and hoping she can stay out of the hospital this year since she ended up there last Thanksgiving. That is my only hope for the rest of this year and every year to come!

Thank you for always caring!

Kerry