Happiest of Birthdays To My Sweet Girl!

As we walked through the doors of Tufts Medical Center on May 4, 2010 we thought we were as prepared as we could be. We had a complete diagnosis (so we thought). We knew she would be blue when she was born (no pink fingers and toes for this little lady). We thought we were going to take her home for 3-4 months so she could gain weight and strength before her first open heart surgery (and we couldn't have been more wrong). The truth is we had no idea what was about to unfold. I wish I could go back 5 years and talk to me then. Tell myself all of the ups and downs, highs and lows that were about to happen over the next so many months. I would tell myself that I would get through it all and that the outcome in 5 years was going to be the most amazing and rewarding gift I could ever receive.

Molly was born on May 4, 2010 at 10:35am weighing 10 lbs. 5 oz and was 21" long. She was born with an ASD, VSD, CAVC defect, Interrupted IVC, Total Anomalous Pulmonary Venous Return (TAPVR), Dextrocardia, Midline liver, right sided stomach, Polysplenia and Malrotated Intestines. What does all of that mean? It means we had one sick little girl on our hands and the hospital that delivered her was in no way able to handle the care she needed. So on May 5, 2010 she was transferred to Boston Children's Hospital and her journey there began. Molly's first car ride wasn't her ride home. It was an ambulance ride across town in the hopes of saving her life. Over the next 8 months we witnessed more sad moments than happy moments. We watched people exit our lives. Some of our closest friends became the nurses that took care of Molly. How could they not be? They were taking care of the most important person in our lives. Molly scared us in ways we never even knew was possible. To this day, I still get sick driving to Children's because of the memories I will never be able to forget no matter how hard I try. But I wouldn't have it any other way if it means Molly will never remember any of what she went through during the months leading up to her original discharge on January 4, 2011!

Over the last 5 years this little girl has overcome so much. She had her trach & g tube removed so much faster than we ever would have thought! She has handled every illness pretty well (knocking on wood and hoping I don't jinx anything). She is now on to annual cardiology visits which is a big jump from every 3 weeks when we first came home! She is only on 3 medications which is down from 22 when she first came home. We now only see cardiology, dental, orthopedic, psychiatry and ophthamology for specialists. She has been in some form of therapy, whether it's Early Intervention or outpatient therapy at NE Rehab, for almost 4 years and she NEVER complains about going...definitely not as much as I do! She will be entering her 3rd and final year of preschool in the fall. She LOVES school and she loves to learn. She is learning and it has definitely helped a tremendous amount with her speech. She has blood draws without crying. She has a pain tolerance higher than both of her parents combined. She is smart and sassy. Sweet and stubborn. Courageous and Beautiful. She is my absolute favorite person and I would do anything for her...we both would. My life may be completely different than it was on May 3, 2010 but it is so much better than I ever could have imagined. I never knew I could love someone the way I love her and I hope she always knows it! Everything we do or say is for her. We are doing our best to give her the life she deserves.
I hope she will read this one day and know just how much she means to us.


We celebrated her birthday yesterday and to see her jumping in the bounce houses with her friends, running around and keeping up with all of the other heart healthy kids was so amazing!

Happiest of Birthdays to the sweetest little girl I know!

Good Busy!

Molly is a pretty busy little lady. She doesn't have a whole lot of extra time to do fun things. Although I guess school and therapy is fun for her. I just don't know how long this lifestyle is going to continue to be fun for her. I'm not going to lie. I worry about her growing up and resenting me for never finding the time to do dance or gymnastics, music lessons or any other fun thing a kid her age does. I just always hope that she knows I made these choices because I think it's what is best for her. I keep telling the moms at therapy that I think she needs a break...we need a break. She has some for of therapy every week, usually multiple times a week since we brought her home from the hospital at 8 months old. She used to love going to therapy but most days now when we are driving there she says "all done Christine and Heather". So badly I want to say we are taking a month off but I don't want her to regress. She is making such great progress and I can't take the risk. Once she's there she's fine and has so much fun. I think it just becomes too much at times. By the time Thursday rolls around we are at the end of the week and she has 2 hours worth of therapy and she's spent and so am I. Aside from being "all done" she is doing great. Her therapists are so happy with her progress. I see more than they do for obvious reasons. She reaches her goals every week with PT. We are now working on putting 4 word sentences together in speech and making her existing words more clear. She tends to leave the last letter off of some words. She is also doing pretty good in OT. We are working on her pencil grasp, midline crossing and strengthening her left hand. She can dress herself and her self feeding has really improved. On the way to school or therapy we always play a game in the car. The other day I went through the alphabet and she had to give me one word that began with each letter and she did it. She even gave me words that weren't the basic word you would give. I thought when I got to Q she would have said "queen" but she said "quail". We are so proud of how far she has come and how smart she is. I know most of this is stuff she should have done already but it's stuff we didn't know if she would ever do. 

She has also developed an attitude. I don't know where it came from (ah-hem). She likes to yell at us now whens he doesn't get her away. Stomps her feet and repeats "no". Throws things when she doesn't get her way. We were at the grocery store today and she wasn't listening so I told her she was going to have to sit in the shopping cart and she screams "No Way Jose". I wanted to laugh but at the same time I wanted to climb in a hole. It does make me happy to see her doing typical kid things but she also makes me want to pull my hair out by the end of most days. My sweet girl is slipping away and turing into a 15 year old teenager. I hope it's a phase and she will come back around. She is pretty well behaved for the most part. 

She had a follow up appointment with the eye doctor to make sure her glasses are working....again! And they are working for now. The doctor said that she wouldn't do anything now but that's not to say she'll never need surgery. All we can do is keep hoping the glasses do the trick!

We have put her anxiety to the test lately. We went to see Frozen on Ice. I was pretty nervous that she wasn't going to tolerate it. Her psychiatrist keeps telling us to talk about it ahead of time. That isn't working. She stresses about it so much by the time we get to where ever we are going. So I tried not telling her or being vague about where we are going (because she always wants to know where we are going). And this time I think it worked. She had the time of her life! 

We also went to the mall which is always a no-go for her. We usually walk in, get her glasses fixed and walk out. This time I went in down the opposite end of the mall and went into Build A Bear. She was OK once we walked in and she saw that it was OK. We built a bear for my aunt that was having surgery. Then we went to have her glasses fixed (this time I broke them...oops). On the way back we had her ears pierced. It's something we have wanted to do for a long time. Obviously we couldn't do it when she was born. I asked her before I did it if she wanted earrings and she said yes so we did it. She cried for a second and hasn't bothered with them since then!

We went to a birthday party at Jay's cousin's house. A place she had never been to. We had no idea how she would react when Anna & Elsa walked in but she was in her glory and had a blast!

Today we went to a Chuck E Cheese like birthday party. I made the mistake of telling her ahead of time and showing her the place online. She kept saying "all gone Mouse" because she thought we were going to Chuck E Cheese. She obsessed about it the whole way there but once we stepped inside her anxiety went out the window and she had so much fun.

Some times I just stare at her in amazement at how far she has come and think about how literally unbelievable she is. I hope she always knows how amazing she is.

Each year we usually do the NStar Walk for Boston Children's Hospital. This year we have decided to do something different. My friends are helping me to do something I've wanted to do for a few years. Books are a huge part of Molly's life. They always have been. She would rather read a book than play with a toy. So in honor of Molly's 5th Birthday (holy smokes I can't even believe she's going to be 5 in less than 2 months) we are having a book drive for the kids recovering in the CICU at Boston Children's Hospital. I remember how a small gesture could turn a dark day around when we were in there and if Molly's story and a small gift can brighten someone's day and give them some hope then that would make my day complete. We are also collecting gift cards ($5, $10 or any amount really) for the nurses. We are putting together goodie bags as a thank for all that they have done for Molly and every other kid that rolls through those doors. Our goal is to get 50 gift cards. If you would like to help and brighten someone's day please email me or send me a Facebook message for my address. My email is kleary923@gmail.com.

I hope everyone has stayed healthy this winter! 

Much love,

The Leary's

She Fights With Every Heart Beat!

I have been struggling with this post. The biggest reason is because I'm just so tired. My job has become pretty demanding and I've had to run Molly here, there and every where. She has a pretty busy schedule. She goes to school Monday - Thursday mornings. Then she goes to therapy Monday, Thursday and Friday. Every other Friday she also goes to a psychiatrist which will hopefully be coming to an end soon. I guess I'll start there. 

Molly has now seen a psychiatrist two times. She has given me some things to try when we out in what is a stressful situation for her. The problem is that we are so busy with everything else that we haven't had a chance to try it out. We are taking her to see Frozen on Ice next month and that will definitely trigger it so we will see if it will help. I was talking to another mom at therapy about her problem and she suggested not mentioning where we are going ahead of time because she may be getting herself so worked up by the time we get there that she becomes overly stimulated and loses control. Makes sense and we are going to try that. We had to go to therapy yesterday and I went a different way because I was afraid that back roads would be covered in snow. The entire way there she asked over and over again if we were going to see Christine and Heather. I could tell she was getting anxious and she didn't believe me until we turned down the street of the hospital. Then she was fine. I really wish I knew what triggered this, what is going on in the brilliant mind of hers when she gets worked up. If she could only tell me...

She had her appointment with ENT (ears, nose and throat). I was so worked up about this appointment. We don't have any answers but the doctor wasn't concerned. He checked her ears, nose and throat. I thought for sure he was going to find something wrong with her nose. one of her nostrils is smaller than the other. She had a breathing tube in one of her nostrils for 5 months so I thought for sure there would be damage but no. It looks great. We were concerned about her baseline congestion. She has always been this way and we don't know why. Her lungs sound great and it's definitely all upper airway. He thinks it's one of two things. Of course the second thing ends in surgery. He thinks that her nose isn't creating enough moisture. It gets clogged, causing post nasal drip, causing her congestion. We are going to try saline drops for 6 months. If that doesn't work we are going to take a look at her adenoids. He said they may be becoming inflamed, causing them to rub together, creating mucous and causing her congestion. In that case they will need to come out. Hoping of course that is not the case. It's hard to accept that decision because it doesn't effect her. She coughs, she clears. She sats 100%. Who knows!

She has been wearing her glasses for a little over a month and her eyes look great. Her head tilting has stopped which is the biggest sign that she is struggling to see. We will go back in March to see if they glasses are working.

She is doing great in therapy! Her speech therapist is thrilled with her progress. She said that she loves working with her because she can see her progress from one session to the next. Her therapist is great and we love her. She has really helped us a lot. She gives me some good things to work on with her and she is so great with Molly. PT is going well. She jumped off of a 12" step the other day. This is huge for her! I've even noticed a change in the way she runs. She's been lifting her knees higher and has picked up speed :) OT...well, I don't know. I don't have much to report. I'm not loving it. I don't see her benefiting from it. She dresses herself, she is getting better with eating. She does struggle with a grasping a pen but I don't know if that would require weekly visits. I do that think that we are both burnt out. She has been telling me that she's "all done" on the way there each week. She has had therapy every week, multiple times a week for 3 years. She has no extra curricular activities. I want to put her in dance or gymnastics but she's so spent from her week that I don't know if she could do it on the weekend. I really don't want her to look back on these times when she's older and resent me from making her do all this therapy with nothing fun. I know she needs it but she needs to be a kid too. I've really been struggling with this a lot lately. I just want her to be happy and she is happy at therapy but we (the three of us) have fought so hard to give her a happy, healthy and "normal" life and I question that that is what we are giving her. Nothing give me more pleasure than seeing her so happy. I love going to therapy because those other moms get what I'm feeling. They can help talk me through it. They get it. They get why I feel this way. I just wish they could tell me what to do. 

She has been enjoying all of the snow that we've had. She loves laying in it, throwing herself in it, throwing it, feeling it. She is so happy and that is what matters most! 

Last one of the Year!

In my last post I had mentioned Molly needed to go back to the eye doctor because we had noticed that she was tilting her head again to compensate for her vision. We went back last Monday. They are kind of stumped and I'm confused as to why because to me it makes perfect sense. They don't understand why she is tilting her head so much. They are trying to prove that her head tilting has nothing to do with her vision but it has everything to do with it. While we were there they put a patch on her eye and they were hoping we could just patch it and that would be the answer but she still tilted her head. They put her in a mild prescription and she never tilted her head. They looked back through their notes and the last time we saw any head tilting was a year ago September when she wasn't wearing glasses so we are going back to glasses. The doctor said that she will probably need surgery in the future because her eyes are misaligned but for now we are going to stick with glasses until it's absolutely necessary. Her glasses should be in this week.

I had an appointment with a child psychologist today regarding Molly's anxiety issues. She didn't tell me anything I didn't already know but it was nice to have confirmation that we are doing all of the right things. I went through her medical history and developmental history (she will meet Molly on her next visit). I told her that I think the majority of the problem is that she can't tell me what is wrong and she said that is 100% correct. I also told her that I try to explain to her in great detail what we are going to do, who is going to be there, etc and she said that is exactly what I should be doing and I'm doing everything right. She seems to do better when it's the two of us and we can take our time and just focus on each other and not what is going on around us. She said that if we (Jay and I) start to get anxious she will feed off of that so we need to stay calm. She said that if she starts getting fussy, whining or crying we need to just ignore her. Don't talk about it or draw attention to it which is what I try to do anyway. As her speech improves, her anxiety level will go down and I hope that is the case. This doctor used to work in a hospital and she said that the way Molly behaves in new surroundings is so common among kids that have spent as much time in the hospital as she did/does. I said that it makes me so sad that she can't have fun at the places she should have fun at and she loves going to the doctors and therapy. She said that when she was developing and growing that she was always in the hospital, at the doctors or therapy so it's all she knows and it's completely "normal" that she reacts this way but as she gets older it should get better. She doesn't really understand why this happened all of a sudden and she can't make the connection to her anxiety because she isn't just anxious around big crowds or at loud places and it has nothing to do with people...it's on places. So she too is stumped. So Molly will meet her at the beginning of January. She doesn't think there is a whole lot she can do because they don't typically treat kids this young for this reason but she can give me some tools to use and hopefully teach Molly some things through play. Fingers crossed!

We were so focused on saving her life for so long that I never would have imagined all of these issues this far out. She has had to overcome so much more than open heart surgery and it just doesn't seem fair. She has had to overcome narcotics withdrawals, developmental delays, nightmares, fear of not knowing what was next, pain and now anxiety issues. We have got through it all and we will get through this too! But through it all she has remained the happiest little girl and I'm grateful for her today and every day. I hope everyone has a great holiday season and a Happy New Year!

Update

When will I ever learn? Anytime I go into one of Molly's doctors appointments with the "eh, this is an easy one attitude" it comes back to slap me in the face. I'm going to back track a few weeks.

I had asked for an OT evaluation at the rehab facility that she goes to for PT & Speech. She was evaluated and started services the following week. My reason for her getting OT services is because she has trouble with feeding herself. She eats fine...not gagging, swallowing, puking, choking. She has silent reflux and is on medication for that but to watch her you would never know. The only reason why we know she has silent reflux is because when her gtube was removed her GI took a look while he was in there and saw some redness. I just wanted some pointers on how I can get her to feed herself...if they had any tips or tricks. Of course the week before she started therapy she started feeding herself better than ever. I know it's just going to be time but I want to help her move along. She had her 2nd appointment on Friday and I left there wanted to cry because I was so mad. Molly's baseline is congested. She always has some kind of cough. Sometimes it sounds worse with the change in weather. If she goes from a hot climate to a cold climate she sounds more "junky". Well, her OT can not get past her junkiness. She is trying to figure out why she is congested. I have told her several times that it is all upper airway and that everyone (all of her doctors) are aware of it. She was asking me if she sees Pulmonology and I told her repeatedly no and that there isn't a need. She asked me if she ever had a chest X-ray and I refrained from the answer I really wanted to give and told her, "yes. She was in the Cardiac ICU for 8 months and received them daily". She was asking because she wanted to make sure that her lungs were fine and I said yes. Then she told me that she wanted her to have a swallow study because it's been a few years. There is no need for a swallow study. A swallow study would tell us why she wasn't eating and she is. I just want to know what to do to help her feed herself. My problem is often times when we meet a new doctor or at times a therapist they all want to be the one that "fixes" a problem and I hate that.

So Molly had a wellness visit with her pediatrician today. She is seen every 6 months instead of once a year. The first thing her pediatrician said to me was that she received a letter from the rehab facility requesting a swallow study. It took everything I had not to lose it. I explained the whole situation and her pediatrician agreed with me that her congestion is not related to her feeding but her congestion is concerning and we need to look into it. So we are going to make an appointment with ORL (a.k.a. Ears, Nose & Throat). Since her congestion seems to be coming from her nose or throat we don't know if she has some granulation tissue causing it or there is something going on in her nose since she had an ET tube down her nose for 5 months or something else.  Either way she is going to be seen and try to figure out the cause. I guess when we are discharged from a specialist we are never truly discharged.

She also asked me about her eyes because she noticed that she was tilting her head when she was looking. I told her that we had noticed her eyes getting worse over the past month. She has been tilting her head back more to compensate. I had just looked today to see when her next eye appointment was and it's not until March so I have to get her in sooner and most likely into a pair of glasses again.

My other concern is Molly's anxiety when she goes some place that she has never been. When we go to the doctors, Target, school or a place that she goes to often she is happy as can be. But if we go some place new her anxiety level is so high. She cries and whines the entire time we are there and we usually have to carry her. We have showed her pictures before we go, tell her where we are going and talk about it, tell her what it's going to be like and no luck. It doesn't matter if there is 1000 people there or 2 people. She does not handle it well and I think it's getting worse. She was never like this before and I don't know when it changed but it's been going on for a few years now. So I mentioned it to the pediatrician again and she agrees that something needs to happen. She suggested that we see a psychiatrist. I have an appointment in two weeks to meet with her while Molly's in school then she will meet with the both of us. It just makes me so sad that she should be able to go to these places and have fun like every other kid and she can't so hopefully the therapist can help us out. It may be a huge waste of time but it's worth a try.

Aside from these issues Molly is doing great. We have a parent teacher conference on Wednesday but I talk to her teacher just about every day. She is so happy with all of her progress. She said when she asks a question in class she usually asks Molly last if no one else gets it because she knows that Molly always knows the answer. I wish I could make the rest of her body function just as perfectly as that little brain of hers. We continue on with all of her therapy and are enjoying this holiday season. Molly HATES Santa with all she has but likes everything else that comes along with Christmas. She is totally content with not believing in Santa. I guess I won't be writing "To Molly From Santa" on presents this year...especially because she can read now. Ha ha!

Thank you for reading my winded update. I hope you all have a happy & healthy holiday season!

Kerry

                                           (From Thanksgiving day)

Long Overdue

Molly has been a busy little lady since my last post. I used to be so good at updating her blog but now that our biggest focus is her developmental needs there isn't a whole lot to update on on a regular basis.

Molly started her 2nd year of preschool last month and absolutely loves it. She never shed a tear and picked up right where she left off. Her teacher has noticed a great improvement in her social skills and speech. She is initiating more conversation, interacting with the kids and initiating play. I don't usually get to speak to her speech therapist and OT but I do get to speak to her PT (in school) and she just loves Molly. She worked with her last year and is happy to have her again this year. She said that she is one of the hardest working students that she works with and they always run out of time because she is willing to do everything this is asked of her and she has fun doing it. That makes me so happy to know that she doesn't have to drag her through her sessions. Her outpatient therapy is going well. She meets her PT goals every week and is making great progress. I'm not really sure how I'm feeling about her outpatient speech therapy. We had to say goodbye to our regular therapist. I just love her and she was so great with Molly. She showed excitement in her accomplishments and always gave me hope for future progress. I'm not getting that from the new people that she is working with but I'm hoping that will come in time.

She did have a dentist appointment and did so well. She just laid there and let the dentist do her thing. She didn't have any cavities but we were told that she will need braces when her permanent teeth come in. Her mouth is just so small and there isn't a whole lot of room in there. Ugh!

We also saw orthopedic for a follow up since discontinuing her braces. Her feet look great and they look even better since her appointment in August. They still turn in a bit but not nearly as bad as they were. He wants her to wear braces at night to bed since her arches haven't developed yet. I have been fighting to get those for over a month now!!!!!!!!

We also saw ophthalmology and that appointment went better than I expected. I thought they were going to give her a weaker prescription because her eye had over corrected but they discontinued the use of the glasses all together...for now. She is a little far sighted but it isn't anything that requires glasses right now. As she gets further along in school and starts reading she may need them but for now she doesn't need them and we are taking the good news and running with it!

Cardiology...the dreaded appointment. I don't know why I always dread it, like dread it to the point where I feel sick to my stomach, because it is always great. Everything is the same...mild regurgitation on the mitral valve and a tiny VSD. Her cardiologist is so thrilled with her. We don't have to go back until school is out and that is the longest we have ever gone in between cardiology visits. I don't like going that long because I like to know what is going on inside that little body.

Molly is really coming along. She is making huge strides with her speech. She loves to sing songs and we are thinking about signing her up for dance classes. There is a studio not far from where we live that has special needs dance classes so I'm going to call and speak to the teacher to see what she would suggest. She would love it! Last week we were in the book store and she was reading the words on the signs of the different sections...dinosaurs, animals, etc. Even when she is looking at her books she can read a fair amount of words in the books. She can also spell a decent amount of words. She is just so smart! I really don't have anyone to compare her to (and I don't want to compare her to anyone)but knowing what she has been through, where she was a year ago and what we were told to expect makes us even more proud of her.

One of the other things we are struggling with is going to new places with her. She does NOT like going anywhere she has never been before. She has anxiety, cries and wants to be carried the entire time we are there. She doesn't not like big crowds and is more content at the doctors office than something she should be enjoying. I'm not exaggerating. She has a wellness visit in December so I'm going to talk to her pediatrician about it again. We have always taken her out and have never kept her secluded (except during cold and flu season) and this is really out of no where. I'm at a loss so hopefully her dr can help us out.

Now that those appointments are behind us for now we are going to focus on Trick or Treating, the holidays and all of the other fun things we have coming up! We hope everyone is remaining happy and healthy!

Happy Halloween!!

Difficult Times

When a family loses a child I think to myself "how sad" but when a family loses a Child to CHD or Heterotaxy my heart breaks in half and I shed so many tears for the family while thinking "that could have been and still could be us".  Five years ago I never could have imagined crying for a child and family I have never met. But as you follow their journey you cry with them and celebrate with them as some of you have done for Molly.

About a year ago I completely removed myself from the Heterotaxy and CHD community for a few reasons but one of the biggest reasons was because the loss of so many kids took a toll on me. It became too much. I was sad all the time. I kept looking at Molly and wondering what was going on in that little body, always examining her lips, toes, fingers. Watching her breathing and obsessing about things I had learned stop monitoring on a daily basis. Once I removed myself from the community I had felt so much better but always felt bad for doing it because I wanted to give new families hope and share our story so that these families that were currently in the hospital wouldn't lose hope. Molly is our miracle and I wanted other families to know that miracles do happen. But I had to get back to baseline before I could do that again. I was enjoying Molly and stopped obsessing about her health...kinda. I was able to laugh and think. As time went on, Molly started school, we started our new normal, I felt good and felt like I wanted to get involved once again. My reason for getting involved was because I don't know where I belong. My friends that have kids can't relate and in turn I can't relate to their life. We try to give Molly a typical childhood but it will never be. We will always be nervous when she touches something in a public place, running to get Purell on her hands before she sticks them in her mouth. If she sniffles or coughs we immediately think "oh crap, here we go. I hope to God this doesn't lead to an admission". About 2 weeks ago Molly asked to go to bed. I brought her up to her bed and she was fussy and wanted go back down stairs which isn't her usual behavior. I sat her at the kitchen table, she coughed, gagged and did her throw up cry that I hadn't heard in over a year. I yelled to Jay to get a towel and we immediately panicked. If she was a typical kid...big deal if she throws up but to us it's a reminder that she has unrepaired, malrotated intestines and we would have to rush her to the ER. Even though she never threw up we slept horrible that night waiting to see what she was going to do. These are all things that no one can relate to unless you are the parent of a Heterotaxy child. So I decided to join the Heterotaxy Facebook group in hopes to connect to those moms because I felt lost and alone. I would give anything to have someone to talk to  that would know exactly how I feel.

Since becoming involved in this community again it has been tough. Over the last 2 weeks, 3 kids (on Heterotaxy kiddo & 2 CHD kiddos) have lost their lives to CHDs. When a little one loses their life to a CHD it hits our household hard. We are reminded that this is our reality. I look at Molly with tears in my eyes and become even more grateful that she is still with us. I'm not sure why we were lucky enough to bring her home from the hospital after all that she had been through and have her the healthiest she has ever been but I'm not questioning it. I am SO grateful to have her alive and well, entering her 2nd year of preschool and growing so much as a little girl both physically and mentally. She is my absolute favorite person and I would give anything to protect her as would any parent. I give her what she wants, do what she wants and soak up every second we have together because I feel guilty for what she has been through and what she will always go through. She goes to doctors appointments, therapy and blood draws without ever complaining. Sadly she is more comfortable at the doctors than she is at an amusement park. It is kind of  heart breaking but definitely makes life a tad easier.

To say I'm sad that Molly is starting school in one week is an understatement. I love having her around and I hate that this summer is coming to an end. I'm not ready to send her back to school but knowing she loves it...well, it doesn't make it any easier but she will have a great time and that is all that matters!!! She does have 3 appointments coming up...eyes, dental and cardiology. Three of the worst ones. I try not to think about it because I will drive myself nuts. I just can't wait for these to be over and put them behind us for another so many months!

I hope you all had a wonderful summer and I will update after her appointments. Please keep these families in your thoughts and prayers. They need them more now than ever before!

Kerry