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!
This is the story of a brave little lady that started her life in a unique way. Her courageous start has paved the way for her to touch the lives of wonderful and supportive people and do amazing things with her life!
Monday, December 15, 2014
Monday, December 1, 2014
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)
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)
Monday, October 20, 2014
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!!
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!!
Sunday, August 24, 2014
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
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
Monday, June 9, 2014
It's almost over
Life has been so busy lately. We never get to stop and catch our breath but it's been a good busy. A good busy for us is anything that is not hospital life. We spend our free time on the weekend at the zoo because Molly loves animals more than anything else. I'm so happy that we bought a season pass.
We participated in the NStar Walk for Boston Children's Hospital yesterday. It was tough getting donations this year but we still managed to raise $5900!!!!!!!!!!! This is going to be our last year walking for Children's because there is a lot that goes into doing this walk. We are grateful for all that they have done and we donate each month on our own. During the walk yesterday, my friends and I were trying to figure out another way to give back to the cardiac unit so we will figure something else out because I always want them to know how grateful I am for giving Molly something I would never have been able to do. We walked 7 miles. I had no idea what 7 miles was going to be like. It was hot, long and it was tough staying hydrated. As the walk went on some of us were lagging behind and others (Jay pulling Molly in the wagon) were pretty far ahead. We had a lot of laughs, a lot of complaining about how hot and tired we were, how are feet and legs were hurting. We just kept thinking about the reason we were doing it and that is what helped us to finish. I ended up getting pretty sick after it was over. I didn't drink enough and had heat exhaustion. Guess Molly gets her hatred for the heat from me. We still had a great time and I was so happy that the people that did show up were there. They mean more to us than they will ever know!!! I can't thank everyone enough who donated. I know that nobody is rich and money you work hard for what you have so the fact that you were able to contribute means so much to us!!!
I had Molly's IEP meeting this morning. I was all fired up going into it because I had received her reports from PT & OT as well as her academic report last week. It had stated that she knew 22 out of 26 uppercase letters and 25 out of 26 lowercase letters, 6 out of 8 shapes & 8 out of 10 numbers. Does that sound great? Yes but it wasn't accurate and that bothered me. She knows all of her letters, numbers and shapes. What's the big deal? She knows most of them. The big deal is that she struggles in every aspect of her life and I want her to get the credit that she deserves when she does something right. I had all of my questions and goals written down for her and I asked them all. The teacher gave her take on everything. Molly has made a tremendous amount of progress this year, she is a joy to have in class, she has trouble transitioning but is doing so much better. She is so smart and is socializing better and better. She is starting to have a back and forth conversation with her peers and teacher. I questioned how she was being tested because she definitely knows her letters and numbers and she said that she's "easily distracted" and she's tested in a classroom setting so it's hard for her to focus. If you know that she knows them all but didn't tell you all of them at the time of the test, you can't give her credit?!
Next was speech. I didn't get this report ahead of time but I was prepared. I had asked her speech therapist what types of words we were currently working on and she said "cvc1cvc2" which would be words like "people, bubble" and she is progressing really fast and can say just about all of them in this section. So at the meeting today I asked what type of words they were working on and she said "CV & CVC" which we haven't worked on in therapy in months. I was surprised when she said this. CVC words are words like "dog, cat". I told her where we were and she didn't think she should be working on those yet. I sit in on every one of Molly's outpatient speech sessions and she is definitely where she needs to be so I didn't agree with this woman today...AT ALL! How is she going to progress if she is being held back? She is fearful of regression over the summer because she was out of school for a week and she thought she had taken a step back. Her one hour of speech a week isn't what is going to prevent her from regressing. She also said that she is easily distracted but can focus in the speech setting because it's just the two of them but if someone opens the door she looks to see who it is. Who doesn't do that? I do that! She had recommended speech therapy during the summer through school. Not happening. I told her that she gets outpatient therapy for speech and we will continue with that during the summer.
OT was next and I really liked this lady. She gave Molly so much credit and understood where I was coming from. I tried to explain to everyone that Molly is 4 on paper only. She can not be compared to other 4 year olds because that isn't fair to her. I find myself doing it all the time. Like when I see the kids running around on the playground and talking to each. But that isn't her and she shouldn't be treated that way. OT was very happy with all of the progress she has made. She gave me a list of things to continue to work on over the summer and didn't think she needed additional therapy over the summer.
PT wasn't there which I thought was kind of ridiculous. She asked if I had any concerns with the PT report and of course I did. It says that she needs hand held assistance going up and down stairs. We do not help her go up and down stairs and haven't for a very long time. They said that she is easily distracted and they do it for safety purposes. Show me a child that isn't easily distracted. I also asked if she more easily distracted than other kids and they said yes. Well, Molly wasn't around kids for a very long time so this is a whole new world for her and she's very curious about everything going on around her. I didn't sign the IEP because I'm going to have her outpatient therapists read it.
They suggested summer school for Molly and I wasn't having any part of that. It's only for 16 days, it would be at a different school with all kids that have delays. Her teacher didn't think she would benefit from it because by the time she transitioned it would be over. I was told that everyone loves her and even people that don't know any kids names know Molly. Someone stopped me in the hall and told me how much she loves her. She said when she hears the name "Molly Leary" she puts her hand on her heart and says "awww". She told me that she is the sweetest little girl and everyone just loves working with her. It was nice to hear how much she is loved. She is going to repeat the three year old program next year and will have the same teacher which will be good for her. But I know one thing...we are both ready for this school year to be over!!!!!!!!!!!!! 9 more days!
I really dreaded this meeting. Every aspect of her life is a battle and I didn't want her education to be that way too. I'm more than just a mom to Molly. I'm her advocate and her voice. I just have to always hope I'm making the right decisions and doing the right thing for her. Hopefully I did her proud today and she will have a great year in school next year!
Thanks for reading my long winded update!
Kerry
We participated in the NStar Walk for Boston Children's Hospital yesterday. It was tough getting donations this year but we still managed to raise $5900!!!!!!!!!!! This is going to be our last year walking for Children's because there is a lot that goes into doing this walk. We are grateful for all that they have done and we donate each month on our own. During the walk yesterday, my friends and I were trying to figure out another way to give back to the cardiac unit so we will figure something else out because I always want them to know how grateful I am for giving Molly something I would never have been able to do. We walked 7 miles. I had no idea what 7 miles was going to be like. It was hot, long and it was tough staying hydrated. As the walk went on some of us were lagging behind and others (Jay pulling Molly in the wagon) were pretty far ahead. We had a lot of laughs, a lot of complaining about how hot and tired we were, how are feet and legs were hurting. We just kept thinking about the reason we were doing it and that is what helped us to finish. I ended up getting pretty sick after it was over. I didn't drink enough and had heat exhaustion. Guess Molly gets her hatred for the heat from me. We still had a great time and I was so happy that the people that did show up were there. They mean more to us than they will ever know!!! I can't thank everyone enough who donated. I know that nobody is rich and money you work hard for what you have so the fact that you were able to contribute means so much to us!!!
I had Molly's IEP meeting this morning. I was all fired up going into it because I had received her reports from PT & OT as well as her academic report last week. It had stated that she knew 22 out of 26 uppercase letters and 25 out of 26 lowercase letters, 6 out of 8 shapes & 8 out of 10 numbers. Does that sound great? Yes but it wasn't accurate and that bothered me. She knows all of her letters, numbers and shapes. What's the big deal? She knows most of them. The big deal is that she struggles in every aspect of her life and I want her to get the credit that she deserves when she does something right. I had all of my questions and goals written down for her and I asked them all. The teacher gave her take on everything. Molly has made a tremendous amount of progress this year, she is a joy to have in class, she has trouble transitioning but is doing so much better. She is so smart and is socializing better and better. She is starting to have a back and forth conversation with her peers and teacher. I questioned how she was being tested because she definitely knows her letters and numbers and she said that she's "easily distracted" and she's tested in a classroom setting so it's hard for her to focus. If you know that she knows them all but didn't tell you all of them at the time of the test, you can't give her credit?!
Next was speech. I didn't get this report ahead of time but I was prepared. I had asked her speech therapist what types of words we were currently working on and she said "cvc1cvc2" which would be words like "people, bubble" and she is progressing really fast and can say just about all of them in this section. So at the meeting today I asked what type of words they were working on and she said "CV & CVC" which we haven't worked on in therapy in months. I was surprised when she said this. CVC words are words like "dog, cat". I told her where we were and she didn't think she should be working on those yet. I sit in on every one of Molly's outpatient speech sessions and she is definitely where she needs to be so I didn't agree with this woman today...AT ALL! How is she going to progress if she is being held back? She is fearful of regression over the summer because she was out of school for a week and she thought she had taken a step back. Her one hour of speech a week isn't what is going to prevent her from regressing. She also said that she is easily distracted but can focus in the speech setting because it's just the two of them but if someone opens the door she looks to see who it is. Who doesn't do that? I do that! She had recommended speech therapy during the summer through school. Not happening. I told her that she gets outpatient therapy for speech and we will continue with that during the summer.
OT was next and I really liked this lady. She gave Molly so much credit and understood where I was coming from. I tried to explain to everyone that Molly is 4 on paper only. She can not be compared to other 4 year olds because that isn't fair to her. I find myself doing it all the time. Like when I see the kids running around on the playground and talking to each. But that isn't her and she shouldn't be treated that way. OT was very happy with all of the progress she has made. She gave me a list of things to continue to work on over the summer and didn't think she needed additional therapy over the summer.
PT wasn't there which I thought was kind of ridiculous. She asked if I had any concerns with the PT report and of course I did. It says that she needs hand held assistance going up and down stairs. We do not help her go up and down stairs and haven't for a very long time. They said that she is easily distracted and they do it for safety purposes. Show me a child that isn't easily distracted. I also asked if she more easily distracted than other kids and they said yes. Well, Molly wasn't around kids for a very long time so this is a whole new world for her and she's very curious about everything going on around her. I didn't sign the IEP because I'm going to have her outpatient therapists read it.
They suggested summer school for Molly and I wasn't having any part of that. It's only for 16 days, it would be at a different school with all kids that have delays. Her teacher didn't think she would benefit from it because by the time she transitioned it would be over. I was told that everyone loves her and even people that don't know any kids names know Molly. Someone stopped me in the hall and told me how much she loves her. She said when she hears the name "Molly Leary" she puts her hand on her heart and says "awww". She told me that she is the sweetest little girl and everyone just loves working with her. It was nice to hear how much she is loved. She is going to repeat the three year old program next year and will have the same teacher which will be good for her. But I know one thing...we are both ready for this school year to be over!!!!!!!!!!!!! 9 more days!
I really dreaded this meeting. Every aspect of her life is a battle and I didn't want her education to be that way too. I'm more than just a mom to Molly. I'm her advocate and her voice. I just have to always hope I'm making the right decisions and doing the right thing for her. Hopefully I did her proud today and she will have a great year in school next year!
Thanks for reading my long winded update!
Kerry
Monday, May 12, 2014
Happy Birthday to Molly and So Much More!
We recently celebrated Molly's 4th birthday! This time of year is always such an emotional time because I'm almost forced to reflect on all that we have been through...all that she has been through. Not that I don't want to think about it because it has made her who she is today but it's a reminder of how hard her life has been and despite all that she has been through she acts like nothing ever happened. She is a well behaved, happy little girl!
She had the best birthday. It couldn't have gone any better. We were nervous about the weather the entire week leading up to it because we planned to have it outside. The weather cooperated for the most part. It was such a great day just watching her run around and play, interacting with everyone that talked to her. Just another reason why I am proud to be her mom. She received so many wonderful gifts and she loves them all!!! She has already mastered some of the educational toys that she received. We got her a puzzle where you match the word to the picture and she can do every single one...such a smart cookie! We worked on singing "Happy Birthday" to her the whole week leading up to it because she was traumatized by that song from a birthday party we went to at Chuck E Cheese. Luckily she let us sing it...about 30 times. I would've sang it 300 times if that's what she wanted. I wish I could go back 4 years and tell myself then what her life would be like in 4 years. It would have made our journey so much easier knowing how our life would have turned out. I probably wouldn't have believed it. I want to thank everyone that had a part in this special day, whether you came to her party, wished her a happy birthday or sent her a gift. I can't tell you how happy it makes us to have people still care after all of this time!
We didn't have time to catch our breath from her birthday party and we were back to appointments, therapy and every day life. She had an Endocrine appointment that following Friday. I was hoping that it would be our final appointment but you just never know with this girl. For once I was right. The endocrinologist said there was no reason to go back so that she can tell me she looks great. The hope is that her thyroid had taken a beating from how sick she was in the beginning of her life and her thyroid levels were effected by a drug she was on for her heart called Amiodarone. She has been stable and Amiodarone free for a very long time, her thyroid levels have been great for a few years and we were discharged from Endocrine. She did have to have labs pulled just to be sure but they don't effect her at all. She was chatting about the animals on the walls while they were looking for a vein, which is no easy task. They took the blood and she was still talking about the lion and the elephant. She will have to have her thyroid levels checked once a year but that can be done by her pediatrician.
The following Monday we had an appointment with ophthalmology. I dread this appointment almost as much as I dread cardiology. Maybe it's because I don't know much about the eye and with her heart I know what to look for. Maybe I'm just waiting for them to tell me that she is going to need surgery. Maybe it's because the doctor speaks so matter of factly and like it's not a big deal. I hate that! We found out that she has pretty close to perfect vision with her glasses on. One of her eyes is slightly worse than the other but her vision is 20/25. With the good always...ALWAYS...comes the not so good. The glasses have over corrected her eye and now it turns out slightly with her glasses on. When she has them off it turns in. She may need a weaker pair of glasses to help correct it. I'll take the weaker glasses over surgery any day! We are going to give it another 4 months then we are back for another visit and she will have her eyes dialated. Luckily this doesn't bother her either. There isn't much really that does. She loves going to the doctor. In fact, every time we get on the highway she asks if we are going to visit Dr. Rhodes, her cardiologist. She always needs to know where we are going when we get in the car and when I tell her we are going to the doctor she's thrilled...total opposite of me and almost every other person on the planet. I guess it's just where she feels comfortable. Unfortunately for her I am not hanging out in doctors offices to make her happy.
We have another appointment a week from today. This one is bright and early next Monday morning in Boston. It is with EP to discuss the long term plan for that little pacemaker of hers. I have about a million questions before we make a decision on what we are going to do. Right now we don't want it out. Unless this doctor can talk a good game and convince me it's the right thing to do I say keep it in! The reality of it is, it's a foreign object in her body and is an infection risk. We are concerned that if they take it out, that is when she will need it. Maybe it's just stuck in the CICU mind set. We have to get over it at some point. Or do we? That way have thinking has got us this far. I'm very nervous about this appointment and I'm trying not to think about it. I don't like being forced to make these decisions. Especially when it's not cut and dry. I don't like making decisions about elective procedures. I will update after her appointment.
We also had an appointment with orthopedic regarding her braces. He would like to see how she does out of them once school is out. So in July we will transition her from her braces to high top sneakers. Her ankles are still weak and that may just be how she will always be. She has fallen arches and we aren't sure if they are going to develop. If that is the case we will discuss long term plans in August. She is definitely more stable in them and walks completely different when she doesn't wear them so only time will tell...like always.
Overall everyone is thrilled with Molly and all of her progress from head to toe...literally. Ultimately the only important things that matter is that she is happy and healthy. She is such a joy to be around and brings so much happiness, perspective and hope to everyone that interacts with her. We are the proudest parents and couldn't have asked for a happier, more courageous little girl!
We are gearing up for the NStar Walk benefiting Boston Children's Hospital. We have less than a month to achieve our goal of $6500 and we are only 44% of the way there. It really doesn't matter if we meet the goal because any amount helps and that makes us so happy to be able to give them what they need since they have given us what we need. If you would like to help us get any closer to our goal you can click here and donate! We are incredibly grateful to everyone that has donated, wished us well or volunteered to walk. We love each and every person that has supported us on this journey and we will never be able to thank you enough for your kind words and donations!
NStar Walk Donations
Life is short so make the most of it. Don't take one second of your time with your kids for granted. There are so many people in our lives that would give anything to have their little ones back with them...even if only for a day.
Kerry
She had the best birthday. It couldn't have gone any better. We were nervous about the weather the entire week leading up to it because we planned to have it outside. The weather cooperated for the most part. It was such a great day just watching her run around and play, interacting with everyone that talked to her. Just another reason why I am proud to be her mom. She received so many wonderful gifts and she loves them all!!! She has already mastered some of the educational toys that she received. We got her a puzzle where you match the word to the picture and she can do every single one...such a smart cookie! We worked on singing "Happy Birthday" to her the whole week leading up to it because she was traumatized by that song from a birthday party we went to at Chuck E Cheese. Luckily she let us sing it...about 30 times. I would've sang it 300 times if that's what she wanted. I wish I could go back 4 years and tell myself then what her life would be like in 4 years. It would have made our journey so much easier knowing how our life would have turned out. I probably wouldn't have believed it. I want to thank everyone that had a part in this special day, whether you came to her party, wished her a happy birthday or sent her a gift. I can't tell you how happy it makes us to have people still care after all of this time!
We didn't have time to catch our breath from her birthday party and we were back to appointments, therapy and every day life. She had an Endocrine appointment that following Friday. I was hoping that it would be our final appointment but you just never know with this girl. For once I was right. The endocrinologist said there was no reason to go back so that she can tell me she looks great. The hope is that her thyroid had taken a beating from how sick she was in the beginning of her life and her thyroid levels were effected by a drug she was on for her heart called Amiodarone. She has been stable and Amiodarone free for a very long time, her thyroid levels have been great for a few years and we were discharged from Endocrine. She did have to have labs pulled just to be sure but they don't effect her at all. She was chatting about the animals on the walls while they were looking for a vein, which is no easy task. They took the blood and she was still talking about the lion and the elephant. She will have to have her thyroid levels checked once a year but that can be done by her pediatrician.
The following Monday we had an appointment with ophthalmology. I dread this appointment almost as much as I dread cardiology. Maybe it's because I don't know much about the eye and with her heart I know what to look for. Maybe I'm just waiting for them to tell me that she is going to need surgery. Maybe it's because the doctor speaks so matter of factly and like it's not a big deal. I hate that! We found out that she has pretty close to perfect vision with her glasses on. One of her eyes is slightly worse than the other but her vision is 20/25. With the good always...ALWAYS...comes the not so good. The glasses have over corrected her eye and now it turns out slightly with her glasses on. When she has them off it turns in. She may need a weaker pair of glasses to help correct it. I'll take the weaker glasses over surgery any day! We are going to give it another 4 months then we are back for another visit and she will have her eyes dialated. Luckily this doesn't bother her either. There isn't much really that does. She loves going to the doctor. In fact, every time we get on the highway she asks if we are going to visit Dr. Rhodes, her cardiologist. She always needs to know where we are going when we get in the car and when I tell her we are going to the doctor she's thrilled...total opposite of me and almost every other person on the planet. I guess it's just where she feels comfortable. Unfortunately for her I am not hanging out in doctors offices to make her happy.
We have another appointment a week from today. This one is bright and early next Monday morning in Boston. It is with EP to discuss the long term plan for that little pacemaker of hers. I have about a million questions before we make a decision on what we are going to do. Right now we don't want it out. Unless this doctor can talk a good game and convince me it's the right thing to do I say keep it in! The reality of it is, it's a foreign object in her body and is an infection risk. We are concerned that if they take it out, that is when she will need it. Maybe it's just stuck in the CICU mind set. We have to get over it at some point. Or do we? That way have thinking has got us this far. I'm very nervous about this appointment and I'm trying not to think about it. I don't like being forced to make these decisions. Especially when it's not cut and dry. I don't like making decisions about elective procedures. I will update after her appointment.
We also had an appointment with orthopedic regarding her braces. He would like to see how she does out of them once school is out. So in July we will transition her from her braces to high top sneakers. Her ankles are still weak and that may just be how she will always be. She has fallen arches and we aren't sure if they are going to develop. If that is the case we will discuss long term plans in August. She is definitely more stable in them and walks completely different when she doesn't wear them so only time will tell...like always.
Overall everyone is thrilled with Molly and all of her progress from head to toe...literally. Ultimately the only important things that matter is that she is happy and healthy. She is such a joy to be around and brings so much happiness, perspective and hope to everyone that interacts with her. We are the proudest parents and couldn't have asked for a happier, more courageous little girl!
We are gearing up for the NStar Walk benefiting Boston Children's Hospital. We have less than a month to achieve our goal of $6500 and we are only 44% of the way there. It really doesn't matter if we meet the goal because any amount helps and that makes us so happy to be able to give them what they need since they have given us what we need. If you would like to help us get any closer to our goal you can click here and donate! We are incredibly grateful to everyone that has donated, wished us well or volunteered to walk. We love each and every person that has supported us on this journey and we will never be able to thank you enough for your kind words and donations!
NStar Walk Donations
Life is short so make the most of it. Don't take one second of your time with your kids for granted. There are so many people in our lives that would give anything to have their little ones back with them...even if only for a day.
Kerry
Monday, March 31, 2014
Forever Grateful!
As I prepare to send out invitations to Molly's birthday party I find it hard to believe that she is going to be 4. I was OK with 3 because 3 still seemed like she was a baby but 4 seems so much older. I want to keep her a baby just one more year since I missed out on so much of her being a baby. The fact of the matter is that she is growing up and I see it every day. She is such a little girl now. She is so smart and is making great progress every single day. She makes us so proud with every new thing she does. Her speech is coming along so fast. She is saying more and more things and she corrects something when she doesn't say it right the first time. Let's be honest, with all of the therapy she gets in the course of a week, I'd be worried if we didn't see progress!
This year has been such a great year for her. She has overcome so much and had a great time doing it all! Since she turned 3 she has graduated from Early Intervention and started outpatient therapy (thank goodness). She had her g tube removed without missing a beat. She started preschool and even though it was a really rocky start for the both of us she is loving it and thriving and (knock on wood) has remained pretty healthy. She had an unplanned admission to Children's in November but bounced back quickly! We took our first plane ride to Disney World thanks to the amazing people at Make A Wish and Give Kids the World. It's a trip that we will never ever forget and are grateful for every single day! She had her first trip to the eye doctor which ended in her needing glasses and she does well with them for the most part. Hopefully we have avoided eye surgery because the glasses seem to be doing the trick. She also started wearing SMOs or braced on her feet. I really did not want to have to go there but I'm so glad we did because they have helped her walking so much. Her ankles still turn in when she doesn't wear them but that just might be how she will always walk...minor issue in the big picture. Developmentally she has come so far. When she turned 3 she was only walking while holding on to our fingers and now she walks like she's been doing it forever. She wasn't saying any words when she turned 3 and now she says a whole bunch of things, knows every single animal, all of her letters, numbers, colors, sings about every song to ever show she watches...and that's a lot : ) She LOVES puzzles and has since graduated to jigsaw puzzles. She is just so smart and I never would have imagined she would've have turned out to be this happy and healthy little girl! I'm so grateful every single day for all that she was able to overcome. I can't imagine my life without her and at one point I thought I may have to face that reality.
She recently had a cardiology visit. I think this appointment is more stressful on Jay and me than on Molly. There's no reason why because she's doing fantastic but things have been going so well for so long I think I'm waiting for things to go in the other direction. But we showed up and her cardiologist decided he wanted to see her before he made the decision if she needed an echo. They did an EKG and everything looked great. Her cardiologist listened to her and said that he could barely hear the leaking on her valve and couldn't really hear her murmurs either. That's not to say that they're not there but it's just very small...woo hoo!!!! We got the cardiology report in the mail the other day and in it stated that she does not have any restrictions on anything she does. It's almost unbelievable. I can't explain the feeling of happiness we feel when we hear things like that when it pertains to her heart because I never thought she would be able to do things like other heart healthy kids! We gave up holidays in the hospital, friendships, my job, our entire life so that we would have a life time of news like this. There was a time I could only wish I could type great news every day and now that time is here! It's all because of the wonderful work of all of the nurses, surgeons and doctors. Say what you will about all of the bad PR going on with Children's right now but we know the truth. We have seen first hand how wonderful they really are. How they save lives of kids that don't have another option. They give hope to families that thought they didn't have any hope left. They are the reason that Molly is doing as well as she is and will continue to grow and be a bratty teenager and successful adult!
We are participating in the NStar Walk for our 3rd year. We are selling tshirts through April 13th. They are made by Molly. She had so much fun making it! You can purchase them here. Part of the proceeds will go to the walk. Or if you do not want to purchase a tshirt but would still like to donate you can also do that. Either way, we are so grateful for all of the love and support we receive for Molly. I hope one day she realizes how much she is loved!
Purchase TShirts Here
Click Here to Make a Donation
~Kerry
3rd Birthday Party!
NStar Walk 2013
First Day of School!
Getting her G Tube removed!
1st day with the glasses
Make A Wish Trip
Hospital Visit : (
This year has been such a great year for her. She has overcome so much and had a great time doing it all! Since she turned 3 she has graduated from Early Intervention and started outpatient therapy (thank goodness). She had her g tube removed without missing a beat. She started preschool and even though it was a really rocky start for the both of us she is loving it and thriving and (knock on wood) has remained pretty healthy. She had an unplanned admission to Children's in November but bounced back quickly! We took our first plane ride to Disney World thanks to the amazing people at Make A Wish and Give Kids the World. It's a trip that we will never ever forget and are grateful for every single day! She had her first trip to the eye doctor which ended in her needing glasses and she does well with them for the most part. Hopefully we have avoided eye surgery because the glasses seem to be doing the trick. She also started wearing SMOs or braced on her feet. I really did not want to have to go there but I'm so glad we did because they have helped her walking so much. Her ankles still turn in when she doesn't wear them but that just might be how she will always walk...minor issue in the big picture. Developmentally she has come so far. When she turned 3 she was only walking while holding on to our fingers and now she walks like she's been doing it forever. She wasn't saying any words when she turned 3 and now she says a whole bunch of things, knows every single animal, all of her letters, numbers, colors, sings about every song to ever show she watches...and that's a lot : ) She LOVES puzzles and has since graduated to jigsaw puzzles. She is just so smart and I never would have imagined she would've have turned out to be this happy and healthy little girl! I'm so grateful every single day for all that she was able to overcome. I can't imagine my life without her and at one point I thought I may have to face that reality.
She recently had a cardiology visit. I think this appointment is more stressful on Jay and me than on Molly. There's no reason why because she's doing fantastic but things have been going so well for so long I think I'm waiting for things to go in the other direction. But we showed up and her cardiologist decided he wanted to see her before he made the decision if she needed an echo. They did an EKG and everything looked great. Her cardiologist listened to her and said that he could barely hear the leaking on her valve and couldn't really hear her murmurs either. That's not to say that they're not there but it's just very small...woo hoo!!!! We got the cardiology report in the mail the other day and in it stated that she does not have any restrictions on anything she does. It's almost unbelievable. I can't explain the feeling of happiness we feel when we hear things like that when it pertains to her heart because I never thought she would be able to do things like other heart healthy kids! We gave up holidays in the hospital, friendships, my job, our entire life so that we would have a life time of news like this. There was a time I could only wish I could type great news every day and now that time is here! It's all because of the wonderful work of all of the nurses, surgeons and doctors. Say what you will about all of the bad PR going on with Children's right now but we know the truth. We have seen first hand how wonderful they really are. How they save lives of kids that don't have another option. They give hope to families that thought they didn't have any hope left. They are the reason that Molly is doing as well as she is and will continue to grow and be a bratty teenager and successful adult!
We are participating in the NStar Walk for our 3rd year. We are selling tshirts through April 13th. They are made by Molly. She had so much fun making it! You can purchase them here. Part of the proceeds will go to the walk. Or if you do not want to purchase a tshirt but would still like to donate you can also do that. Either way, we are so grateful for all of the love and support we receive for Molly. I hope one day she realizes how much she is loved!
Purchase TShirts Here
Click Here to Make a Donation
~Kerry
Wednesday, February 26, 2014
NStar Walk & Cardiology Visit
It’s no secret that Molly is the most important person in our life. We have devoted every spare second and every ounce of energy towards her health and well being. It’s also no secret how much Boston Children’s Hospital means to us for good reason.
One day back in May 2010 Jay and I were on our way to the cafeteria
at Children’s and we saw advertisements on the floor for the NStar Walk
benefitting Boston Children’s Hospital. At the time we had no idea what it was
and we honestly didn’t care at the time because we had so much going on with
Molly. But once we realized what it was we said if she ever made it home we
would do the walk. In June 2012 we
registered for our first NStar walk and were able to raise $4500 because of the
generosity of so many people that love her.
Last year was our second year. We had a fantastic group of
people that worked so hard to help us give back. And with it we were able to
raise $6500!!!!!!!! To say we were excited is an understatement. We had such a
great day. So many memories were made and that’s what the majority of our life
is all about.
We have registered once again and on June 8, 2014 we will be
participating in the walk. It’s one of our favorite days of the year. We are
hoping to have most of our team back again this year and then some. So if you
are interested in walking with us we would love to have you! If you would like
to help us raise money but you can’t make the walk you can become a virtual
walker. I’m so proud of all of our friends and family that have helped us raise
money for Children’s. It’s not something they have to do but they do it because
they love us and our family. I’m also proud of everyone that has ever made a
donation to Children’s for whatever reason! We are so grateful to all of you!
If you would like to help us exceed our goal by making a
donation you can do so by clicking on the link. Just remember that no donation
is too small and every amount is greatly appreciated!
We are also going up to another big appointment. Molly has a
cardiology and EP appointment on Tuesday. She will be seen in Boston by
cardiology for an echo & EKG. She will then be seen by EP so we can discuss
the long term plan for her pacemaker. Her cardiology wants to find out if we
are going to keep it in until the battery dies or if they want to remove. Jay
and I vote to keep it in until the battery runs out. I’ve been stressing about
this appointment like I always too. It has been on my mind since Christmas. I
have no reason to be nervous really because her echo is always unchanged but I’m
just waiting for the time that he tells us it has gotten worse. She looks
fantastic and there aren’t any outward signs that it should be different but I
just want to put the entire day behind us. I feel like I can’t make any plans
until this appointment is over. I will update it once it’s over and I can
hopefully breathe a sigh of relief!
I hope everyone is staying warm this winter!
Kerry
Subscribe to:
Posts (Atom)