As I wake up this morning the first thought that pops in my mind is "I hope the Warner's are feeling a little bit better today as yesterday was probably the hardest day of their life". Then I scroll through my Facebook page to see more than half of my "friends" with the same face as their profile picture, the face of little Ryker with heart felt condolences.
As a heart parent you connect with each other on an unexplainable level. Though you've never met you feel deeply for the parent that loses their child, roots them on when they are in for surgery, hoping with all that you have that they pull through and make it just one more night. You check Facebook 1000 times a day to make sure that baby is still alive. On days that they are having a tough time you send a simple " <3" to the parent so they know you are thinking about them, on days that they are in surgery you ask for prayers for this little baby that you have never met but love almost as much as you love your own. When you see a picture that is posted by a heart parent you aren't looking at what the kid is doing or what they are wearing but the color of their lips and fingers. If there is an O2 monitor, you notice the numbers. Your entire way of thinking is completely different. If I see a picture of a heart healthy baby, it's so odd to me that they don't have a scar down the middle of their chest. It just doesn't seem normal to me anymore.
Last night I learned of the loss of Ryker Warner. Ryker turned one in March and spent a year in the hospital...at Boston Children's Hospital. He received great care while he was there and went through so much in his short life. His parents fought for him like no other parent I know. I am saddened by the loss of each child but Ryker was a little different. I had the pleasure of meeting his mom one day. She is amazing...beautiful, devoted, caring and loving. She always had great things to say about Molly and how Molly inspired her. She never gave up hope. She fought until the very end. I know I will probably never see her again but I hope that I am able to be a part of her life in some way.
Over the past three years I have heard "what you do for Molly is amazing", "she wouldn't be where she is if it wasn't for the two of you", "I don't know how you do it". I know those things are all meant to be nice things and I appreciate it but I honestly believe that we don't do anything extra. We don't do what any other parent wouldn't do for their child...or at least I like to hope that's true. What we do for Molly is be a parent to her. We are raising her like anyone would. We just have to take extra steps to make sure she remains healthy. Yes, we always live with a fear of the unknown for her future but we don't let it consume us. We allow ourselves to live and make future plans. Would we have done that 2 years ago? Probably not. But it gets a little easier as time goes on. "She wouldn't be here if it wasn't for you" ~ the truth is, she wouldn't be here today if it wasn't for Boston Children's Hospital. There is a reason why they are #1 in cardiology and cardiac surgery. She is the reason why. They are one of only a few hospitals that has as much experience as they do with Heterotaxy patients. What makes Heterotaxy patients so different and difficult to care for? They each have a unique anatomy and no two patients are the same. You may come across another child that is similar to yours but never the same and that's what makes each one so special. "I don't know how you do it" ~ this statement probably drives me crazy more than anything. It makes it sound like Molly is work and she's not. She's our life. I'm not saying that working full time and going to the hospital every day wasn't hard because it was. It was exhausting and emotionally draining but we just went through the motions and did it because we love her more than anything else. Three years later here we are. That initial hospital stay is a distant memory, but one I will cherish and never forget. A lot of good came out of that admission. We have met a lot of great people, we know how wonderful that hospital is and we have a happy & healthy little (almost)3 year old. We are like every other family, we just do things a little different. Instead of taking Molly to gymnastics, preschool and dance class, we go to Early Intervention, doctors appointments and visit the CICU when we are there. As much as I complain about EI we do these things because it's where we feel comfortable and accepted.
You may ask yourself "why do they continue to follow these kids if it's never a happy ending?". That isn't true. They are not all sad endings. When we were in the hospital our focus was on Molly. It wasn't until month 7, as we were getting ready for discharge, that we started talking to another mom who had been there a little longer than we had. When we got home I was put in touch with another Heterotaxy mom, from there I joined groups on Facebook...heart mom pages, Children's Hospital support group, a bunch of pages of sick kids. I was warned by a friend not to do it because it was going to become too much but I didn't listen and thought I could handle it. Afterall, Molly was doing well and these people understood me, felt what I felt. But as time went on and more kids started losing their battle it became more difficult to function in every day life. Some kids were still struggling every day, whether they were at home or in the hospital. I started comparing Molly to these kids and it was driving me nuts. I couldn't do it anymore. I deleted the pages, stopped following some but continued on with a few that I had learned to love. Unfortunately most of them have not ended well but I can't do it anymore. That doesn't mean I don't think about these kids or families but for my sanity & Molly's sake I can't do it. I know that we are so fortunate that Molly has made it this far and is doing as well as she is. We don't take one second for granted and I hope no one else will either. Enjoy and love your kids because some where, probably not very far from you, a parent has lost theirs and would do anything to have them back, just for a minute.
So this isn't completely depressing, Molly will be three one week from today and we can't wait to celebrate not only her life but the life of all of her Heterotaxy buddies both past and present.
Much love,
Kerry
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!
Saturday, April 27, 2013
Monday, April 22, 2013
Preschool...Yes? No?
For 2 1/2 years I have been getting someone in all of Molly's therapies to understand and agree with me and today I finally found someone.
Molly had her first of three preschool assessments today. I tried not to think about it or talk about it because it would just make me nervous. We have so much going on so I didn't want to stress out about this too. We just never know how she is going to react. She can be the sweetest thing or a nightmare. Today she decided to spare me the torture and was very good. She went right over to one of the therapists and was playing with her while I filled them in on her background since they knew very little. After I told them how long she had been in the hospital and a brief description (if there is such thing) of what she had been through we discussed her developmental delays, my concerns about her delays and my concerns about her starting preschool. I'm sure every parent is nervous about their kid starting preschool but even more so I think as a parent of a child that has been through so much. Maybe I'm wrong. I only have one kid that has been to hell and back to get to where she is now and I want to protect her with all that I have.
We started with my concerns about her developmental delays which are obvious. I told them that my biggest concern is her speech/communication delay since I know that is where we struggle the most. I also told them that I'm also concerned with her walking but not as concerned since she has made great gains in the past few months. Still a concern but not as much. Then they asked me about my concerns with her starting preschool. I told them that our biggest concer with her starting preschool is the germ factor. We have spent the last 2 1/2 years protecting her from getting sick and we have been pretty successful. I know we can't spend our entire lives protecting her and she's going to get sick but I'm never going to stop trying. I also know that when she does start school that they won't freak out when she gets too close to the bathroom (like she did today at the assessment), or if she puts her blankie on the floor then picks it up and puts it in her mouth but I just want them to be aware of how we are and to take some kind of precautions with her. She's not like every other kid going into preschool. So after they did their evaluation they went over some of our options. Going into today I was told that because she doesn't walk independently she would have to go into the therapeutic classroom for safety reasons. I was torn about her going into this classroom and I stated it before. I liked the fact that they are so cautious of germs in this classroom because most of the kids were trached and in wheelchairs but I also felt that Molly wouldn't benefit from this classroom because those kids are trached and in wheelchairs and she wouldn't be motivated to walk, talk and run around and FINALLY SOMEONE AGREED WITH ME! They said before they met Molly and going off of just reading her history they would've agreed that she needed to be in the therapeutic classroom. But since meeting her and seeing what she can do, how she acts, etc that they thing she needs to be in the integrated classroom which is typical three year olds as well as kids that need a little help. They also agreed that there is no doubt she will catch up. I told them that the thing that drives me nuts more than anything was that I could never get Early Intervention to forget about her age. They always looked at her like a 2 year old that didn't walk or talk and you can't do that. They also agreed. They said that you have to subtract at least a year from her life because she was in the hospital, adjusting to home life and never did the typical baby things that she should've done. She said if you subtract a year from her life, she's really not that delayed. They were happy that she is taking the appropriate steps forward and not skipping any milestones and without a doubt, with the right therapy and socializing with other kids she will catch up in no time. I could've hugged them! It's so great to finally get someone to understand what I've been trying to say all along and to agree with me and to give us hope in her developmental progress. We don't have a plan yet. She still has to be evaluated by speech and the teacher then we have to have an IEP meeting to come up with a plan and what we would like for Molly. She can go to school up to 4 times a week for 2 1/2 hours a day. I can't do that and I told them that. I told them how I haven't had her for that long and I wasn't ready to let her go into the world without me 4 days a week...until I get a taste of what it's like to have 2 1/2 hours a day to myself : ) If we decide to move forward with preschool she would start in the fall. They gave us the option to do therapy for four weeks in the summer but I think we are just going to enjoy the summer months without Early Intervention, appointments, demands of having to be some place at a certain time, and forget about the medical piece of the puzzle. She will still going to an outpatient therapy over the summer but that's OK. She needs some type of therapy and it will only be one day a week.
Last week we met with the Make A Wish volunteers that are going to be working with us. They were also very nice. Molly warmed right up to the lady...probably because she brought gifts for her. We told them that we wanted to go to Disney World. Our first choice to go would be October which after the kids go back to school and right before cold & flu season. We are going to make sure that Molly is seen by cardiology before we go. We don't want any surprises and want to make sure everything is OK before we leave the state. He is also going to have to answer all 5,000 questions we have before we leave. He must hate us!
Last bit of business. There is only a month & a half left until the NStar Walk for Boston Children's Hospital. We recently met our team goal of $4,000 and are well only our way to $5,000. If you would like to help us reach our goal and thank them for giving us the most amazing gift please click the link here...
NStar Walk for Boston Children's Hospital
I think that's it and probably enough! Until next time...
Molly had her first of three preschool assessments today. I tried not to think about it or talk about it because it would just make me nervous. We have so much going on so I didn't want to stress out about this too. We just never know how she is going to react. She can be the sweetest thing or a nightmare. Today she decided to spare me the torture and was very good. She went right over to one of the therapists and was playing with her while I filled them in on her background since they knew very little. After I told them how long she had been in the hospital and a brief description (if there is such thing) of what she had been through we discussed her developmental delays, my concerns about her delays and my concerns about her starting preschool. I'm sure every parent is nervous about their kid starting preschool but even more so I think as a parent of a child that has been through so much. Maybe I'm wrong. I only have one kid that has been to hell and back to get to where she is now and I want to protect her with all that I have.
We started with my concerns about her developmental delays which are obvious. I told them that my biggest concern is her speech/communication delay since I know that is where we struggle the most. I also told them that I'm also concerned with her walking but not as concerned since she has made great gains in the past few months. Still a concern but not as much. Then they asked me about my concerns with her starting preschool. I told them that our biggest concer with her starting preschool is the germ factor. We have spent the last 2 1/2 years protecting her from getting sick and we have been pretty successful. I know we can't spend our entire lives protecting her and she's going to get sick but I'm never going to stop trying. I also know that when she does start school that they won't freak out when she gets too close to the bathroom (like she did today at the assessment), or if she puts her blankie on the floor then picks it up and puts it in her mouth but I just want them to be aware of how we are and to take some kind of precautions with her. She's not like every other kid going into preschool. So after they did their evaluation they went over some of our options. Going into today I was told that because she doesn't walk independently she would have to go into the therapeutic classroom for safety reasons. I was torn about her going into this classroom and I stated it before. I liked the fact that they are so cautious of germs in this classroom because most of the kids were trached and in wheelchairs but I also felt that Molly wouldn't benefit from this classroom because those kids are trached and in wheelchairs and she wouldn't be motivated to walk, talk and run around and FINALLY SOMEONE AGREED WITH ME! They said before they met Molly and going off of just reading her history they would've agreed that she needed to be in the therapeutic classroom. But since meeting her and seeing what she can do, how she acts, etc that they thing she needs to be in the integrated classroom which is typical three year olds as well as kids that need a little help. They also agreed that there is no doubt she will catch up. I told them that the thing that drives me nuts more than anything was that I could never get Early Intervention to forget about her age. They always looked at her like a 2 year old that didn't walk or talk and you can't do that. They also agreed. They said that you have to subtract at least a year from her life because she was in the hospital, adjusting to home life and never did the typical baby things that she should've done. She said if you subtract a year from her life, she's really not that delayed. They were happy that she is taking the appropriate steps forward and not skipping any milestones and without a doubt, with the right therapy and socializing with other kids she will catch up in no time. I could've hugged them! It's so great to finally get someone to understand what I've been trying to say all along and to agree with me and to give us hope in her developmental progress. We don't have a plan yet. She still has to be evaluated by speech and the teacher then we have to have an IEP meeting to come up with a plan and what we would like for Molly. She can go to school up to 4 times a week for 2 1/2 hours a day. I can't do that and I told them that. I told them how I haven't had her for that long and I wasn't ready to let her go into the world without me 4 days a week...until I get a taste of what it's like to have 2 1/2 hours a day to myself : ) If we decide to move forward with preschool she would start in the fall. They gave us the option to do therapy for four weeks in the summer but I think we are just going to enjoy the summer months without Early Intervention, appointments, demands of having to be some place at a certain time, and forget about the medical piece of the puzzle. She will still going to an outpatient therapy over the summer but that's OK. She needs some type of therapy and it will only be one day a week.
Last week we met with the Make A Wish volunteers that are going to be working with us. They were also very nice. Molly warmed right up to the lady...probably because she brought gifts for her. We told them that we wanted to go to Disney World. Our first choice to go would be October which after the kids go back to school and right before cold & flu season. We are going to make sure that Molly is seen by cardiology before we go. We don't want any surprises and want to make sure everything is OK before we leave the state. He is also going to have to answer all 5,000 questions we have before we leave. He must hate us!
Last bit of business. There is only a month & a half left until the NStar Walk for Boston Children's Hospital. We recently met our team goal of $4,000 and are well only our way to $5,000. If you would like to help us reach our goal and thank them for giving us the most amazing gift please click the link here...
NStar Walk for Boston Children's Hospital
I think that's it and probably enough! Until next time...
Thursday, April 11, 2013
Three weeks...in just three short weeks we will be celebrating Molly's third birthday. I could say where does the time go but it has not flown by and I'm OK with that. I cherish every second I have with her...although I'm not as happy about those middle of the night moments...but I'm happy to have them. I'm not only counting down the days til Molly's birthday but it means many changes for our family.
We should be used to change by now but I don't do well with change. I like to have a routine and stick to it. Once Molly turns three that means no more Early Intervention...woo hoo!!! It will be the first time in 3 years that we won't have people coming into our house every week. May 1st is her last day with Early Intervention but before that can happen we have a lot going on in the meantime. On April 22nd Molly will have her first of 3 assessments for the public school system. This will be her PT/OT evaluation. I haven't heard when her other two will be but it has to be done before her birthday. We also have to have an IEP meeting. But I'm not going to stress about it because I don't care if she starts her therapies right away. It will be nice to have a little bit of a break. On Thursdays we have EI at the library. I don't know if they have already checked out because we are nearing the end or what but Molly did some puzzles for about 15 minutes and she spent the last 45 minutes standing at the computer playing a game. I expressed my concerns about her communication delay. We have talked about it before but I guess I just needed to hear that she is making the appropriate progress one more time. She explained that because she recently started with motor immitation that that has to come first before she can start speaking. She has a few definitive words. She definitely says "ga" for "go", "OK", "again". So I'm sure her vocabulary will expand over time but I'm not a patient person. I really do try not to compare her to other kids but sometimes I find myself doing it and I hate that I do it. So after talking to her today I felt a little better. Hopefully with her therapy getting kicked into high gear next month and some fresh, new ideas those will also help. Or maybe we just need to give her whatever time she needs. We also talked about her walking and how great she is doing and how far she has come. We know we still need to work on it with her and she's not running any marathons any time soon but forward progress is what it's all about in this house. Once she starts at the outpatient rehab facility she will be fitted for another walker. The one she is currently using belongs to EI so we have to give it back and it's kind of too small now. She is getting all around now. Doing things that a "typical" two year old does and I love it. I could've done without her falling out of her seat at the kitchen table today but she didn't cry which made me get over my mild heart attack quickly. Here are some things Molly has been up to! I have also included a YouTube video of Molly on the swings for the first time this year.
Molly on the swings
Under the fish tank trying to get her Dora guitar
As most of Facebook world knows we got the call from Make a Wish this week. I never answer my home phone because 95% of the time it's the wrong number but I was rushing around and picked it up not even thinking. It was the longest 30 seconds of my life. I think she was purposely dragging it out. But ultimately she told me that they spoke to Molly's cardiologist and they were able to grant Molly a wish!!!!!!!!!!! Even now while I'm typing this I could throw up because I can't believe something is going to happen in our favor. I was so happy which made Molly happy and that's the point! It is the first time that I wanted to hug her cardiologist. I don't know what he said to make it happen and I honestly don't want to know. Make a Wish is an organization for kids with life threatening illnesses and while I know that she does in fact have a life threatening illness I try to forget about it and live our life like we have a normal, happy almost 3 year old. Once the excitement wore off, a little bit of sadness set in because I was once again reminded that she will always be considered a person with a life threatening disease. So while we are so grateful to Make A Wish and their team of volunteers it does mean that your child may not live a long and happy life. We hope with all we have but that is our reality. But we are going to take the good out of this experience. Within 2 weeks 2 Make a Wish volunteers will contact us and set up an appointment to meet with us and discuss Molly's wish which will be to go to Disney World. We know she is young and probably won't remember but what we do know is she is going to have the time of her life. She will love everything about it from the rides, to being outside and the crowds of people. We are obviously nervous about germs but we are going to take every precaution we can to keep her healthy on the plane and in the parks. We are hoping to go in October so I will keep everyone posted along our journey.
We are also in full fundraising mode for Boston Children's Hospital. We are currently in the top 5 as a team for fundraising. That is so exciting! Out of all of the teams registered to walk we are #5! I hope we can stay there!!! If you would like to help us keep our spot please click on the link to donate. If you would like to join Team Molly Moo for a great life experience and a day of feeling great about yourself and what you have done for an amazing place please join us on June 9th!
NStar Walk Donation Page
As always, thank you for checking in on Molly and supporting us!!
Kerry
We should be used to change by now but I don't do well with change. I like to have a routine and stick to it. Once Molly turns three that means no more Early Intervention...woo hoo!!! It will be the first time in 3 years that we won't have people coming into our house every week. May 1st is her last day with Early Intervention but before that can happen we have a lot going on in the meantime. On April 22nd Molly will have her first of 3 assessments for the public school system. This will be her PT/OT evaluation. I haven't heard when her other two will be but it has to be done before her birthday. We also have to have an IEP meeting. But I'm not going to stress about it because I don't care if she starts her therapies right away. It will be nice to have a little bit of a break. On Thursdays we have EI at the library. I don't know if they have already checked out because we are nearing the end or what but Molly did some puzzles for about 15 minutes and she spent the last 45 minutes standing at the computer playing a game. I expressed my concerns about her communication delay. We have talked about it before but I guess I just needed to hear that she is making the appropriate progress one more time. She explained that because she recently started with motor immitation that that has to come first before she can start speaking. She has a few definitive words. She definitely says "ga" for "go", "OK", "again". So I'm sure her vocabulary will expand over time but I'm not a patient person. I really do try not to compare her to other kids but sometimes I find myself doing it and I hate that I do it. So after talking to her today I felt a little better. Hopefully with her therapy getting kicked into high gear next month and some fresh, new ideas those will also help. Or maybe we just need to give her whatever time she needs. We also talked about her walking and how great she is doing and how far she has come. We know we still need to work on it with her and she's not running any marathons any time soon but forward progress is what it's all about in this house. Once she starts at the outpatient rehab facility she will be fitted for another walker. The one she is currently using belongs to EI so we have to give it back and it's kind of too small now. She is getting all around now. Doing things that a "typical" two year old does and I love it. I could've done without her falling out of her seat at the kitchen table today but she didn't cry which made me get over my mild heart attack quickly. Here are some things Molly has been up to! I have also included a YouTube video of Molly on the swings for the first time this year.
Molly on the swings
At the library for Early Intervention
As most of Facebook world knows we got the call from Make a Wish this week. I never answer my home phone because 95% of the time it's the wrong number but I was rushing around and picked it up not even thinking. It was the longest 30 seconds of my life. I think she was purposely dragging it out. But ultimately she told me that they spoke to Molly's cardiologist and they were able to grant Molly a wish!!!!!!!!!!! Even now while I'm typing this I could throw up because I can't believe something is going to happen in our favor. I was so happy which made Molly happy and that's the point! It is the first time that I wanted to hug her cardiologist. I don't know what he said to make it happen and I honestly don't want to know. Make a Wish is an organization for kids with life threatening illnesses and while I know that she does in fact have a life threatening illness I try to forget about it and live our life like we have a normal, happy almost 3 year old. Once the excitement wore off, a little bit of sadness set in because I was once again reminded that she will always be considered a person with a life threatening disease. So while we are so grateful to Make A Wish and their team of volunteers it does mean that your child may not live a long and happy life. We hope with all we have but that is our reality. But we are going to take the good out of this experience. Within 2 weeks 2 Make a Wish volunteers will contact us and set up an appointment to meet with us and discuss Molly's wish which will be to go to Disney World. We know she is young and probably won't remember but what we do know is she is going to have the time of her life. She will love everything about it from the rides, to being outside and the crowds of people. We are obviously nervous about germs but we are going to take every precaution we can to keep her healthy on the plane and in the parks. We are hoping to go in October so I will keep everyone posted along our journey.
We are also in full fundraising mode for Boston Children's Hospital. We are currently in the top 5 as a team for fundraising. That is so exciting! Out of all of the teams registered to walk we are #5! I hope we can stay there!!! If you would like to help us keep our spot please click on the link to donate. If you would like to join Team Molly Moo for a great life experience and a day of feeling great about yourself and what you have done for an amazing place please join us on June 9th!
NStar Walk Donation Page
As always, thank you for checking in on Molly and supporting us!!
Kerry
Tuesday, April 2, 2013
My head is spinning!
We wrapped our Boston appointments last week. We met with Endocrine and came up with a discharge plan. Molly is currently on Levothyroxine for her thyroid disease. We believe she does not have "true" thyroid disease and it is cardiac induced from being so sick. Her thyroid levels have been stable for the past 2 years so the plan is that she will have labs drawn next month then we will stop her Levothyroxine once she turns 3. We will wait a month and have labs drawn again to make sure that her thyroid level remains stable and that should be it.
Last week Molly had her first dentist appointment. Her pediatrician wanted her to see a dentist before she turned 3 and it's so important for cardiac kids to have healthy teeth. It's important for anyone but more so for them. I had so much anxiety about this appointment because I knew she wasn't going to be happy. Everyone kept telling me that pediatric dentists have all kinds of tricks to help the kid. Umm...not true! I took her in and spoke to the dentist for a few minutes. She tried to take a look at her teeth from the chair and Molly was not having that so she sat on my lap and laid her head on the dentist's lap. She screamed the entire time which I guess was the trick everyone was talking about because then Molly kept her mouth open. She brushed her teeth, flossed them, put flouride on them and counted them and sent them on our way. She said her teeth looked good. They were slightly discolored which I figured since she only recently let me brush her teeth without a battle. They are also very crowded which we will also have to keep an eye on as she gets older. We can just add that to the "list of things to keep an eye on".
We were supposed to hear from the school system because she's supposed to start her therapies through the public school system once Early Intervention ends next month and I never heard back. Early Intervention tried to call them with no call back. There are two different types of preschool class rooms. The main stream class and the therapy class which is the one Molly would be in. Each class thought the other one was handling the paper work and neither of them were. So I stopped by last week to sign a consent to evaluate and they were going to call me back to set up 3 appointments for Molly's evaluations. No call back. I'm already not happy about sending her to preschool and they are not making me any happier about it. While we were there we spoke to the director of the special ed program and she asked me if Molly walked. I said "no". She thought she did because the therapists that came out to evaluate Molly said she did and that she didn't qualify for the therapy classroom. So that also has to be squared away.
I touched base with the outpatient therapy hospital that she'll be attending beginning in May and they are going to call back this month with an appointment for an evaluation. They seem very nice over there and I'm excited to start this program. I've heard nothing but great things about this place.
We have also been in touch with Make A Wish. I was talking to a guy that I used to work with who is a wish granter for Make A Wish and he thinks Molly would be a great candidate. I also spoke to her cardiologist and he said he would be more than happy to help us out. So we have started the process and I'm just waiting to hear if she has been accepted. The lady on the phone didn't sound too sure but we will wait and see. If she doesn't get accepted it's not the worst thing to happen. Sure we would love it if she did get accepted but if she doesn't, it just means that she is too healthy and that is never a bad thing. So we will wait and see.
Molly recently started walking short distances with a walker. We have tried so many times and each time she would have a meltdown. One day she just pointed to it so I took it out and off she went. Her left leg is still weaker but has come a long way. With practice it will get stronger. I took the walker to Early Intervention last Wednesday and they don't think she will need it for long because she looks so great using it. We are trying to figure out a way to get her a walker because we are currently using the one through EI and once she is done with them next month we have to give it back but I think we found a way to get it approved through the insurance. She spends most of her day standing and walking along while holding on. We still struggle with verbal communication but she is using signs and her own sign language to communicate. Our speech therapist is happy with the progress she is making so hopefully with time she will get there. Her sleeping is still horrible but I've stopped trying to figure out why and just accept the fact that I'm never going to sleep through the night again. It's been about a year and a half since I've slept through the night. I'm tired. But with plenty of coffee and a busy 2 1/2 year old I manage to get through the day. As for feeding, we are going on our 3rd month of not using the g tube. It hasn't been a struggle at all. She still won't bite into things. If I give her a sandwich I have to break it up because she won't bite a piece off. She will self feed with finger foods or snacks but not with a spoon. Although she has made so much progress over the last year we still have a long way to go but we are so proud of all that she has accomplished!
Molly Walking by herself!
We had a nice Easter. It was quiet. We spent it at my parents house. Molly got plenty of Easter baskets from her grandparents, uncle and friend..and of course the Easter Bunny. She didn't sleep well the night before so the day really could've been a disaster but she was pretty good.
We have also been very busy preparing for the NStar Walk for Children's Hospital Boston. We will be participating on June 9th. We are so excited to be taking part this year. Our team of walkers this year is so amazing. We have all been working so hard to raise funds and give back to the hospital that gave us everything. We are a little more than half way to our team goal. I can't thank these people enough for being a part of the most important day (aside from her birthday, of course). If you would like to make a donation you can do so here. If you can not, we completely understand and your love and support is more than enough!
NStar Walk Donation Page
Well, I think that's all I have for now. I hope everyone is doing well and has stayed healthy through the winter.
Thank you so much for always loving and supporting our miracle!
Kerry
Last week Molly had her first dentist appointment. Her pediatrician wanted her to see a dentist before she turned 3 and it's so important for cardiac kids to have healthy teeth. It's important for anyone but more so for them. I had so much anxiety about this appointment because I knew she wasn't going to be happy. Everyone kept telling me that pediatric dentists have all kinds of tricks to help the kid. Umm...not true! I took her in and spoke to the dentist for a few minutes. She tried to take a look at her teeth from the chair and Molly was not having that so she sat on my lap and laid her head on the dentist's lap. She screamed the entire time which I guess was the trick everyone was talking about because then Molly kept her mouth open. She brushed her teeth, flossed them, put flouride on them and counted them and sent them on our way. She said her teeth looked good. They were slightly discolored which I figured since she only recently let me brush her teeth without a battle. They are also very crowded which we will also have to keep an eye on as she gets older. We can just add that to the "list of things to keep an eye on".
We were supposed to hear from the school system because she's supposed to start her therapies through the public school system once Early Intervention ends next month and I never heard back. Early Intervention tried to call them with no call back. There are two different types of preschool class rooms. The main stream class and the therapy class which is the one Molly would be in. Each class thought the other one was handling the paper work and neither of them were. So I stopped by last week to sign a consent to evaluate and they were going to call me back to set up 3 appointments for Molly's evaluations. No call back. I'm already not happy about sending her to preschool and they are not making me any happier about it. While we were there we spoke to the director of the special ed program and she asked me if Molly walked. I said "no". She thought she did because the therapists that came out to evaluate Molly said she did and that she didn't qualify for the therapy classroom. So that also has to be squared away.
I touched base with the outpatient therapy hospital that she'll be attending beginning in May and they are going to call back this month with an appointment for an evaluation. They seem very nice over there and I'm excited to start this program. I've heard nothing but great things about this place.
We have also been in touch with Make A Wish. I was talking to a guy that I used to work with who is a wish granter for Make A Wish and he thinks Molly would be a great candidate. I also spoke to her cardiologist and he said he would be more than happy to help us out. So we have started the process and I'm just waiting to hear if she has been accepted. The lady on the phone didn't sound too sure but we will wait and see. If she doesn't get accepted it's not the worst thing to happen. Sure we would love it if she did get accepted but if she doesn't, it just means that she is too healthy and that is never a bad thing. So we will wait and see.
Molly recently started walking short distances with a walker. We have tried so many times and each time she would have a meltdown. One day she just pointed to it so I took it out and off she went. Her left leg is still weaker but has come a long way. With practice it will get stronger. I took the walker to Early Intervention last Wednesday and they don't think she will need it for long because she looks so great using it. We are trying to figure out a way to get her a walker because we are currently using the one through EI and once she is done with them next month we have to give it back but I think we found a way to get it approved through the insurance. She spends most of her day standing and walking along while holding on. We still struggle with verbal communication but she is using signs and her own sign language to communicate. Our speech therapist is happy with the progress she is making so hopefully with time she will get there. Her sleeping is still horrible but I've stopped trying to figure out why and just accept the fact that I'm never going to sleep through the night again. It's been about a year and a half since I've slept through the night. I'm tired. But with plenty of coffee and a busy 2 1/2 year old I manage to get through the day. As for feeding, we are going on our 3rd month of not using the g tube. It hasn't been a struggle at all. She still won't bite into things. If I give her a sandwich I have to break it up because she won't bite a piece off. She will self feed with finger foods or snacks but not with a spoon. Although she has made so much progress over the last year we still have a long way to go but we are so proud of all that she has accomplished!
Molly Walking by herself!
We had a nice Easter. It was quiet. We spent it at my parents house. Molly got plenty of Easter baskets from her grandparents, uncle and friend..and of course the Easter Bunny. She didn't sleep well the night before so the day really could've been a disaster but she was pretty good.
We have also been very busy preparing for the NStar Walk for Children's Hospital Boston. We will be participating on June 9th. We are so excited to be taking part this year. Our team of walkers this year is so amazing. We have all been working so hard to raise funds and give back to the hospital that gave us everything. We are a little more than half way to our team goal. I can't thank these people enough for being a part of the most important day (aside from her birthday, of course). If you would like to make a donation you can do so here. If you can not, we completely understand and your love and support is more than enough!
NStar Walk Donation Page
Well, I think that's all I have for now. I hope everyone is doing well and has stayed healthy through the winter.
Thank you so much for always loving and supporting our miracle!
Kerry
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