Not much to report...yet!

I remember the days when I could update her blog every day..sometimes multiple times a day. I do NOT miss those days at all yet I can remember the feeling I had when I was typing them and it's a totally different feeling than the one I have right now.

Molly is doing so great. The older she gets, the more she does, the more rewarding it is for us. Just over the past week or two she is signing more words to us. She has "more" and "all done" down pat. Especially if it's something she really wants or something she really doesn't want. She also signs "eat", "baby", "sleep or in her case, night night", "hi", "bye" and some others that I can't remember off the top of my head but those are the words she uses the most. She is also starting to say more words and trying to say so much of what we say. Her eating is so much better too. She eats whatever we eat which will also help her oral motor and talking. Sometimes she'll fight us to eat and only want yogurt. I will fight back for a little while before I give in. I don't want her to be spoiled but I also don't want her to have an aversion to food. We've made too much progress to go back to that spot so it's tough at times. We haven't used her g tube in over a month now. We are so excited with how well she is doing without it. She takes all of her meds just fine, lets us brush her teeth like it's never been a problem even though about a month & a half ago it took two of us to do it. Her walking is coming along too. She is doing so much better. Her left ankle still turns over a little when she's barefoot but if she has shoes on she doesn't do it. She used to drag her left leg when she walked, then she would march and now she does a normal walk. At times she'll even walk only holding on to one hand. She has made so much progress in the last month alone. I try not to let myself think about what she should be doing and focus on what she is doing because if I think about what she should be doing it makes me feel so bad for her. I know she'll get to where she needs to be with time and she's come so far and we are so beyond proud of her.

Next month is a busy month. A month I've been dreading since before Christmas. On the 12th we have a cardiology appointment...echo, EKG, weight check. I can't even put into words how much this appointment stresses me out. I hate everything about it. I have a pit in my stomach during the echo. I try to read the echo techs expressions but there usually isn't much of one since she's so focused on how crazy Molly's heart is. Then I try to give myself a pep talk..."she's fine. Look at the patient. The CICU always said look at the patient. She looks great. She's pink. Her O2 is always fine. She's growing, etc". Then I start to think "what if the regurgitation on her mitral valve is worse? We are going to have to face that procedure at some point." Then I think "please just hurry up before I puke." I know it's going to be a great appointment and he's going to tell us how he never thought he would see the day when she looked so great and make a few other annoying remarks that we could do without. But all I want to hear is that the regurge on her mitral valve is either the same or better. Fingers crossed!!! We also have an appointment on the 15th with Growth & Nutrition. This should be our last appointment..YAY! Then we have an appointment with Endocrine and her first dentist appointment. Good luck to that guy! I think we have an assessment next month for preschool as well and I have to call the outpatient rehab facility to meet with them. So a pretty busy month but I guess that's the price we pay for not having an appointment in 3 or 4 months.

We still struggle with her sleeping or lack there of. We stopped the Melatonin. She was sleeping worse with it. Since we have stopped it she has woken up a few times during the night but it's only for a minute. I can deal with that. I can't deal with the 2-5am wake up. So hopefully we are back on track...for now!

We have also registered for the NStar Walk for Children's Hospital Boston. This is our 2nd year and we are very excited. We had so much fun last year and can't wait to do it again this year. We have a great team of people registered to walk with us and helping us to raise funds. We are already over $1000 in donations. With each donation we are sending out a Molly Moo Support Pin made by her team. So if you are interested in either joining our team or making a donation please click on this link:

NStar Walk Donation Page

                                      This is the pin that you will receive with each donation!

If you have already made a donation we thank you from the bottom of our hearts! It means so much to us.

Well, that's a wrap! I'll update after her cardiology appointment in a few weeks (if I make it through). Thank you for always loving our little lady!

Kerry

CHD Awareness Week

The chances of having a child born with Heterotaxy Syndrome is 1 in 250,000. Those odds kind of sound like your chances of winning the lottery, don't they? The chance of having a child born with a CHD (congenital heart defect) is 1 in 100. Those odds do not seem fun. In fact, they seem far to common. The truth is CHD is the number one birth defect yet most people have never heard of it. I know I have never heard of it before I got pregnant with Molly. Now that I am aware of it and know most of the defects, it's a pretty scary life to live. There are so many different types. Molly's heart defects are below:

ASD
VSD
CAVCInterrupted IVC
Dextrocardia

While some of her defects have been repaired, others will never be repaired. We try not to live in constant fear but it's always in the back of our head if she is acting a little off or if she pees a little less one day or if she doesn't gain weight. We monitor her so closely ever day. We check her oxygen levels and heart rate once a week. We are constantly checking her fingers, toes and lips to make sure they are pink. She is tiny in stature with tiny feet to match. She has been placed on bypass twice. She has a pacemaker. But she is not alone. The CHD community is huge. We, as heart parents, connect on a level that no one will understand. We love one anothers kids because we understand what they have been through. We share in their highs and cry with their lows. We have seen way too many kids lose their battle with CHD and it just doesn't seem fair. We don't know why it happens but what we do know is that it makes us stronger people and parents for knowing about it and living through it. We are not better than anyone that has a heart healthy child. We just look at life and our children in a different light. We are trained to look at them differently. We connect without even meeting each other. It's all we know now. Their child's name because topic of conversation in our house when they are struggling. We check Facebook 100 times a day for an update when they are in surgery. It's an unexplainable connection. While I wish Molly never had to worry about her heart, I'm happy to know these other parents and have someone that understand what we feel.

We don't know what Molly's heart will need for repairs in the future but we protect it with all we have. She will most likely need her mitral valve repaired or replaced at some point but we try to focus on today and encourage her to live a full, happy and most importantly, a healthy life. This week we are keeping the CHD angels in our thoughts and in our hearts. We celebrate this week for them and for all of the other kids that have fought so hard just so they can have a little bit of normalcy. They want to be like everyone else and deserve a fair shot at life. I wish we could some thing to give them what they deserve. But for now, we can spread awareness...for the angels, the warriors and for Molly!

Because Molly is 1 in 100!