Help us give back!

As we start preparing for Molly's hospital stay next week we are reminded about how physically ill we feel walking back into the hospital, walking her back to the OR, laying her on the table, walking away from her while trusting the people that are about to take care of her for the next hour and a half or so while we head to the surgical waiting room, one more time, choking back tears because I refuse to cry. We will then speak to the nurse liason who will then ask for our cell phone numbers, tell us there is coffee in the back. Explain to us that if they haven't heard from the OR in an hour they will call back. Once the surgeon is done he will come out to talk to us, all the while I want to cut her off and tell her we know the drill and we've done this before...too many times before. Jay will probably try to get internet connection on is ipad as I just sit and people watch, trying to listen to the conversation of the people next to us and hear from Jay that he's hungry even though I'm sure we'll stop at Dunkin Donuts on our way in. Most people can't eat when they're nervous but not Jay. No wonder why people have a hard time figuring Molly out. Look what I'm dealing with :) The surgeon will then come out and talk to us with his "god like" attitude and tell us so matter-of-factly how it went. We'll make our way up to the 8th floor where we will wait in the CICU waiting room for Molly while they try to calm her down...my guess is with some kind of sedation that probably won't do much. She needs her blankie and her parents. Even though we get nervous, sick to our stomach and anxious we know that she is in the best possible care. We have to keep reminding ourselves that she's been through so much more...so much worse. Here is the proof. Molly's stats:

* Heart surgery at 8 days old
* Bypass twice with her 2 open heart surgeries
* 3 trips to the cath lab
* had a breathing tube down her nose/mouth for 5 months
* Battled a blood infection
* Chylous Effusions
* IVs literally from head to toe
* Trach
* G tube
* Pacemaker
* Fractured Femur
* Sulfa allergy (we found this out the hard way)
* Hypothyroidism
* Narcotics tolerance & withdrawals
* Countless blood transfusions, chest tubes, echocardiograms, EKGs, fevers, doctors appointments
* Been on as many as 22 or more different medications at one time (she was on 22 when she came home)
* Few EEGs
* We are approaching our 5th bronchoscopy and our 8th trip to the OR.

But through it all she has fought like no one else I know. She is a happy happy little girl. To look at her you would never know there was anything wrong until you take off her shirt and see that perfect like down the middle of her chest and all of the marks from the chest tubes, pacing wires, etc. How many people do you know that have been through all of this and still wakes up every day with a smile on their face? If it wasn't for Children's Hospital Boston and all of the wonderful doctors and nurses that have cared for Molly she wouldn't be that baby either. I can't explain or make anyone understand how wonderful they are and how lucky we are to have them 40 minutes from our house. I wish every state had a hospital as wonderful at CHB because no child deserves to go through all of this and not have the same outcome. I said to Jay tonight that nothing bothers me more than when people don't realize how lucky they are and how great they have it. I know we weren't dealt an ideal hand and there are times I feel sorry for myself but I also know that there are people worse off than we are. My point is that we want to give back to Children's and with the only way we know how right now is doing the NStar Walk in June. We're not asking for a large donation because trust me we know that money is tight. Even if you give $1. A little goes a long way and dollar after dollar starts to add up. Even if you can't donate know that we still love you for loving Molly and you will always mean the world to us!

If you are interested, here is the link:
http://howtohelp.childrenshospital.org/walk/team/LK0110.htm

As always, thank you for the support!

Kerry

All Good Things Must Come to an End

Life has been pretty great lately. It's the first time in I don't even know how long that I've been able to say that. We haven't had a doctors appointment in a few weeks (other than an unexpected RSV vaccine) which makes life seem so normal. Molly has been babbling a lot of words. She has no idea what they are but she says them (as I mentioned in my last post). The other night I was putting her to bed and I said "mama" and she repeated me a few times. She really hasn't done it again since but she will. She never does what I want her to do when I want her to do it but I guess that makes sense because I never did what my mother wanted me to do.

We have had some unusually warm weather in Massachusetts recently and we have been taking advantage of every bit of it when we can. On Sunday we decided to go out to lunch at a real restaurant so we could see how Molly would do. She's been to Wendy's and stuff like that but that is only over the past few months. She did great. She was laughing at the waitress and rubbing the waitresses leg when she came over to the table. Once we were done we were going grocery shopping but it was so nice out and we drove by a park. We pulled over and debated about getting out. We are so afraid of germs but as long as we are so careful there is no reason why she can't do some of the other things that kids do. We put her in the swing and she loved it. It was so great to see her enjoying things that other kids do and some parents take for granted. I took her to the park again today with our friend and her daughter and Molly loved the swings. There wasn't a whole lot more she could do anyway. She was so content just swinging on the swing. There were a bunch of other kids there, some younger. Did I notice that there were younger kids walking around? Yes, but I know that'll be her some day. I know she'll be walking around and I'll be chasing her through a playground but for now this is OK. She is loving her life the way it is and I'm so grateful that she is able to. Because if you told me a year and a half ago that I would be pushing her on a swing I probably would've called you a liar. Never did I think this is the way things were going to turn out and I'm pretty sure there are a hospital full of doctors and nurses that would've agreed with me.

While she was down for her nap I was thinking about how amazing she is doing in all aspects of her development. She literally amazes me everyday. When she got up from her nap I fed her her dinner. We have been working on drinking because that is one of the last steps to getting that g tube out. She won't drink from a bottle or any of the 5,000 sippy cups that we have so early intervention suggested a juice box because I can squeeze the box and it will go up the straw. We have been working on that for about a month now. Well, today she sucked the juice up the straw. It takes so much for me to get excited and that did it! She is did it the entire time I was feeding her. It may seem like such a minor thing but it is a huge accomplishment. It's so great to see when some of the hard work that I put into her pays off!

In my last post I mentioned that Jay was taking a test to become certified in his field and he passed! We are so proud of him. Not many people could've done it but he did!

Unfortunately all of our excitement is going to come to a brief stop because the week after next is Molly's surgery. I'm kind of bummed that she's going to be recovering from her surgery (at home) for Easter but it is what it is. There's always next year.

Gotta run. Molly's pulling the leaves out of Jay's plant. Hope all is well!

Love,
Kerry

Love, Molly!

Hi Everyone! Mommy has been slacking with the updates so I figured I'd update everyone on how I've been doing. There really isn't a whole lot to report. I ended up getting a surprise RSV vaccine. My pediatrician was able to get a 6th dose approved this year. That didn't make me very happy. It also didn't make me happy that I had to wait for 45 minutes for the doctor to come in to give it to me. But now it's definitely over for this year. They are going to try to get it approved next year but generally insurance doesn't approve over the age of 2 but with kids like me they will some times approve it for a 3rd year. We'll see. As much as I hate getting that vaccine, I'm pretty sure I would hate having RSV even more. So I will be a big girl and get the shot as many times as I need to.

I've been torturing mommy & daddy a little bit at night. I kind of like to wake up in the middle of the night, screaming and crying, until mommy comes in and rocks me to sleep in the glider. I finally fall back to sleep only to wake up when she puts me back to bed. Sometimes I'm up for a few minutes and other times it's a few hours. It all depends on what I feel like doing at the time. They have been racking their brains trying to figure out why I'm doing this. It used to be my belly. If I didn't poop that day I would wake up with a belly ache. But we had cut back on some of my formula so that I would become more thirsty forcing me to drink more which was kind of making it hard for me to poop so mommy & daddy started me on a very small dose of Miralax. I get less than 1 teaspoon every other day and so far it's doing the trick. So they can cross that off the list. I'm not napping too long because mommy wakes me up after 2 hours no matter what. Cross that off of the list. They don't let me watch TV before bed so it's not that. They have tried switching the music that they play for me, they even moved the furniture around in my bedroom, they sucked the boogies out of my nose, run the humidifier, don't run the humidifier, put Vicks with lavender on my chest which is supposed to make me sleepy, didn't give me a nap during the day, shut the lights off, keep the lights on, different night lights. They have literally tried everything. Daddy has been sleeping downstairs because I have been keeping him up at night and he can't function at work the next day. The 2 nights that he slept downstairs are the 2 nights that I slept through the night. They will never figure me out. Never have been able to and probably never will. I even learned that if I kick my crib hard enough, the Minnie Mouse and Goofy dolls that are on my crib will fall off and I can play with them when I should be sleeping. Kind of like now. It's 9:30pm and I should be asleep but instead I'm playing with anything I can find in my crib, forcing mommy to come upstairs and take everything out of my crib except for me and my 2 blankets.

I have been loving music therapy. The lady that comes to see me is very nice. She plays the guitar and sings to me and I play along with her ukulele. It's so much fun. It really motivates me to stand up and work on the things they are asking me to work on. I also really like to play the keyboard and bang on the drum. We have been working on strengthening my hips. My standing is so much better and you can tell that my hard work is paying off. When I stand up I'm so happy and so proud of myself. You can tell by the smile on my face. Of course, it helps that mommy and daddy cheer for me every time I do it. I can stand up while holding on to something. I can go from sit to stand using just my leg strength. Early Intervention is so impressed with my progress. I still have a long way to go and I'm going to need help once Early Intervention ends when I'm 3 but I'll catch up to where I'm supposed to be at some point and my parents won't know what to do with their free time once that time comes.

The other day mommy was feeding me dinner and she had one of my baby cookies in her hand. I took the cookie, put it in my mouth and bit a piece off, chewed it and swallowed it. I think I gave her and daddy a heart attack. Never did they expect me to do that. But I didn't want them to get too excited so I haven't done it again since. I've been drinking from a juice box with the hopes that I'll learn to drink from a straw. I take the juice in and swallow it because mommy can squeeze the box but I haven't learned to drink from the straw yet.

I've started saying "ma ma" and "da da". It's more like "ma ma ma ma ma" and "da da da da da" but it's a start and everyone is very happy with that. I'm making all kinds of sounds now and I really really love to torture my dogs. Nova isn't as fun because he doesn't give me a reaction when I push him, pinch him or pull his tail. He just walks away. He really only wants to be my friend when I'm eating anyway. But Lulu always barks at me when I touch her and that makes me laugh so hard. Mommy says she feels like I do something new every day and that makes mommy and daddy so happy. Forward progress. It's all about forward progress.

My birthday plans are in full swing. The date is set and the theme has been chosen. We went back and forth between Strawberry Shortcake and Care Bears. In the end it was Strawberry Shortcake (I think it's because that was mommy's favorite growing up). I do love Strawberry Shortcake but Mickey Mouse will always be #1 to me. Mommy thought she was going to make all of the decorations for the party but what she didn't take into consideration was that I wasn't going to allow her any spare time for that. Between taking care of me, working, doctors appointments and everything else...she would be out of her mind to think she was going to be able to do that. So she decided she will make a few things, instead of everything. It's just a great distraction from my upcoming hospital stays.

Daddy has also been pretty busy this past month. He has been studying for some test for work. He studied every night when he came home from work, went to class every Tuesday night after work and he finally took the test this past Friday. He is the smartest guy I know and I'm sure he did great. Hopefully he'll find out how he did within the next week or so.

I think that's about all for now. My next doctors appointment is Endocrine on the 29th (stupid appointment) then I have my preop on April 2nd and surgery on the 4th. Hopefully I'll get to update again before then. If not, mommy will definitely update after my surgery and let everyone know how I'm doing.

Happy St. Patrick's Day!

Love,
Molly :)