Molly's transition to preschool hasn't been easy...for her or for me. I know I'm having a hard time because she is. So many parent's that I have talked to with kids with disabilities, who have been in therapy or the hospital for an extended period of time have kids that will just go to anyone but not Molly and it's so odd to me because she has been around so many different people in her life. From her initial hospital stay, to at home nursing to Early Intervention and doctors appointments. I don't understand it. But she loves us and I'm not going to complain about that. It just makes it difficult on us because Jay and I haven't been out together in 2 years. I love being with Molly and it feels weird when I'm not with her but she has to get sick of us at some point, right?
Monday was really hard when I was dropping her off at school. Monday's are usually difficult because she has 4 days off of school. I've already been thinking about pulling her out. Maybe she's not ready, she is only 3. Maybe another year of just therapy and being a kid would do her some good. Maybe adding more days of school would help her adjust better. Maybe I need to talk to the teacher to get a better idea of what is going on in the classroom because all I see is a screaming child entering the school with tears rolling down her face, saying "bye" to me through the tears. So I decided to talk to her teacher and find out what was going on and to talk to her about the transition. I dropped her off on Monday and I swore that was going to be the last day. I sat in my car in the parking lot of the school trying not to lose it. I have done pretty well up to this point but I was so upset at how upset she was going into school. I talked to Jay about what we were going to do and said all of the above to him. When I picked Molly up she was much better. I spoke to the teacher and she said she had her best day yet. She was dancing, playing with the other kids, participated during circle time, etc. I expressed my concerns and she suggested adding a 3rd day because she is constantly being pulled out of class for therapies and she misses so much so that 3rd day will give her a class day without therapy. So we are going to try that when we come back from FL. This morning she walked with me up to the school instead of having me carry her. She cried when she saw the aide but by the time they got inside she was happy. So as long as I know she is happy once she's inside I'll have to live with that and just have my heart ripped out by her every morning. I hate that she's sad but now I'm starting to think she's just manipulating me : )
She is doing great with everything else. Her speech is coming along. She is making great progress and her therapist at rehab is so happy with her. She is walking all over the place, like she's been doing it her whole life. She doesn't want to sit still now. Yesterday I was taking the dogs out and when I came back she had dead bolted the door with her inside and I couldn't get in. I was banging on the door and trying to open it and she finally let me in. She's lucky she's cute!
That's all I have for now. We are leaving in 9 days for Disney but whose counting?! We are so excited but lots to do before we go!
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!
Wednesday, September 25, 2013
Wednesday, September 18, 2013
Preschool...
We just wrapped up our second week of preschool and Molly isn't loving it any more than she did the first week. When we come off of the highway we take a right to go to school and a left to go to rehab. When I take a right she starts fussing when we take another right on to the street where the school is she starts crying. It breaks my heart. I wish she could understand me when I try to bargain with her and tell her I will be back soon to pick her up because if she did understand me I'm sure she would feel better. I hate that she has already felt so much pain, anxiety and sadness and now she should be having fun at school and she can't because of everything else that she has been through from surgeries to doctors appointments to therapy to all of the people poking and prodding and coming and going from her house. I keep very busy while she's at school. Before I know it it's time to pick her up. She doesn't get out of school until 11:30 but I always get there 20 minutes early because I'm so excited to see the smile on her face when she sees me. Today I was waiting for her by the little park at the school and I was watching the other kids run around and play. It made me so sad to see those kids running and to hear them speaking in full sentences. Not that I was sad for them but I was sad for Molly because she doesn't do any of those things. I know she will do all of those things and more in time. All of the other kids walk out first and because Molly takes a little longer to go down the stairs she is always last. I couldn't help but notice that the girl in from of Molly was a whole head taller than her. She looked like a little baby walking out of school today. She's just this little tiny peanut and I was so proud of her walking out today, knowing how scared she is going in in the morning.Here is a picture of her hanging out before heading off to school this morning. She looks so grown up!!
She got her glasses yesterday. It's one more thing for us to fight with her about. She will keep them on when we are out but if we are home she doesn't want to keep them on. Now when I tell her to put her glasses on she does it. She really is such a good little thing! I hope they do the trick and we can avoid another surgery.
We have our final meeting with Make A Wish on Friday and I'm very excited. This trip couldn't have come at a better time. I think the three of us NEED a break from reality. We could use some fun!
She got her glasses yesterday. It's one more thing for us to fight with her about. She will keep them on when we are out but if we are home she doesn't want to keep them on. Now when I tell her to put her glasses on she does it. She really is such a good little thing! I hope they do the trick and we can avoid another surgery.
We have our final meeting with Make A Wish on Friday and I'm very excited. This trip couldn't have come at a better time. I think the three of us NEED a break from reality. We could use some fun!
Tuesday, September 10, 2013
Finally a breath!
Our summer has been very busy. I feel like it has slipped away and we didn't have much of a chance to enjoy it which is probably the case for many people. All summer long I was stressing about making sure that everything was done in time for preschool, her first day of preschool, having her g tube removed and the dreaded cardiology appointment. I think I let these thoughts consume my every day and I wasn't able to look forward to or enjoy anything that was going on but now they are all behind us.
PREOP: We had made the decision to have Molly put under anesthesia to have her g tube removed. We didn't do the closure because we didn't want to add any time to the procedure that wasn't necessary at this time. Her GI doctor is pretty convinced that it will close on it's own in time anyway so we will see. Her preop appointment was at 9am on Tuesday, September 3rd. Getting into Boston that early during the week is no joke. We met with the nurse and got her vitals checked which were perfect. Then we met with anesthesia who always tries to put the fear of god in you by giving you the worst case scenario. When she first saw Molly she said how great she looked and she wasn't expecting her to look like that based on her history. We signed consent and we were on our way.
SURGERY: Her surgery wasn't supposed to be until Friday, Sept. 6th but it was moved up to the 4th. This meant that she was going to miss her first day of school. I wasn't entirely sad about this but I would have liked it if she went about doing it a different way. We were his first case which was 9am. We had to be at the hospital by 7:30. Everything moved pretty quick. Before we knew it we were back in preop holding area waiting for the surgeon and anesthesia. The anesthesiologist said "she looks great...much worse on paper". I know it's supposed to be a compliment but really?! Child Life gave us some stickers to keep her entertained. She was so great. Never fussed once. I suited up and prepared to take her back. We walked back with anesthesia and they joked with her about her hair and tried to keep the mood light. I laid her on the table while she fought the anesthesia. She was watching Yo Gabba Gabba and was laughing and banging her legs to the music. Finally the turned the gas up some more and she drifted off to sleep. It is the hardest, most emotional thing I have to do for her. I gave her a kiss and met up with Jay and we walked out to the surgical waiting area. An area that we are all too familiar with. We checked in with the nurse liason who said "oh you've been here before haven't you?". Pretty sad when she recognizes you considering how many families they see in the course of a year. But hopefully she won't see us again for awhile. The procedure was quick and she handled everything great. Her O2 sats, blood pressure, heart rate and temperature were normal the entire time. He did look around while he was down there and saw some redness at the bottom of her esophagus and took a biopsy of it. He is thinking it's from reflux so we started her back up on Omeprazole. While she was under they were going to do an echo. She was do for one anyway and they can obviously get better pictures when she's not moving around. The entire thing was about an hour and a half. By the time we got to see her she was awake and crying but didn't require any oxygen. I climbed into bed with her to calm her down. She started vomitting...probably from all of the air in her belly. She fell back to sleep for about 45 minutes and woke up much happier. The surgeon gave the OK to go home but wanted cardiology to give the OK as well. The nurse contacted the on call fellow and no one wanted to make the decision so we had to wait for her cardiologist. He said if she looked as good as the echo then she can definitely go home so we were discharged by 2pm. She was back to herself by the next day!
No More G Tube!
OPTHAMOLOGIST: That Friday she had an eye doctor appointment. Not for any reason other than she's been through a lot and we don't know how it has effected her eyes. The worst that could happen is that she would need glasses...so I thought. We expected that she was going to need glasses because her left eye turns in from time to time. We met with two doctors. The first one was great. She held a card with 4 pictures on it and she had to match it to the correct image on the screen. She did pretty good for the most part. Some of the objects were similar and towards the end she was losing interest. She spent a lot of time taking pictures of her eyes and trying to see how bad her eye turned in. After she was done another doctor came in. She was asking me if Molly tilts her head back a lot to see. I said that she did it when there was something on TV that she hadn't seen before or if someone new walks into a room. I just assumed it was something she did and never thought it had to do with her sight. She asked me if she ever had genetic testing and I said "no". So many specialists have asked me that and I never asked why but it was really bothering me. She dialated Molly's eyes and sent us out into the waiting room. After 20 minutes she had us come back into the room and explained to me that she has something called A Pattern Esotropia. This is when her eye(s) turn in when she looks up and straight on but are straight when she looks down which is why she tilts her head to see when it's something she wants to see correctly. The way to fix it is with surgery. It took all that I had not to burst into tears. Just 2 days ago she was in the OR and now we were going to head back?!?!?!? I wanted to scream how unfair this all is for her. I asked her why she had asked about genetic testing and she said because a lot of cardiac kids end up needing glasses and she was curious what they had found out. So they wanted info...info they are never getting about my kid. They can use someone else's as a guinea pig for awhile. I think she knew I was upset and tried to make me feel better. She said that this is a common thing they find in kids this age and we can try glasses first. She isn't sure if they will do anything but it's worth trying. It's just a mild prescription because she's only mildly farsighted. She said if this doesn't work the procedure is completely elective and we can decide when we want her to have it done. The worse thing that would happen is that she wouldn't have depth perception. It would be a day procedure...except for Molly because of her history which is something we hear every time she goes into the OR. So we are going to try the glasses and see how it goes. Hopefully they will do the trick. I ordered them yesterday and they will be in in about 7-10 days...they are wicked cute!
The car ride home after she had her eyes dialated
FIRST DAY OF PRESCHOOL: I have dreaded this day for about a year. It's nothing something I wanted for her in any way...not this soon. But the day was here and I was not happy about it. I kept busy so I wouldn't stress about it. I just kept telling myself that the worst thing that would happen on the first day is that she would cry. Eventually she would stop. Jay has an amazing boss and sent him home so that he could be there for Molly's first day of school. We arrived at the school around 8:50. I saw here teacher but couldn't find the aide. The teacher said they switched aides so someone else would be taking care of her. WHAT?! This woman knows nothing about her! She doesn't know how crazy we are about germs, Purell, Lysol wipes! She came over and introduced herself but never asked a question. She took Molly from us and said she was going to be fine and took her inside. We never gave her a kiss, said goodbye...nothing. It was all very rushed. I handed her her backpack and told her that the Purell and Lysol wipes were in the front. Jay explained in the quickest way possible, and with her half listening, that Molly is immune compromised so please Purell her hands. Before we knew it she was gone. We had to go into the office and sign some papers so that she could start school. We were speaking with the director of Special Education and I told her how we weren't happy about them switching the aide. She didn't seem to care. We asked if we could walk by her classroom so we could hear if she was crying. I didn't want to because I didn't want that sound to haunt me until I could pick her up but it would've made Jay feel better so that's what we were going to do. Just as we were about to leave the principal came out and said she was just sitting with Molly. She was crying but they gave her a book and she was fine. Jay headed back to work and I cleaned the house to keep busy. With every second that went by I felt relief that my phone hadn't rang to come get her. I figured she was fine after 20 mins or so. I picked her up at 11:30 and the aide greeted me with Molly. I could tell she had been crying and asked her about it. She said she had a "rough day". I really hate that term because it reminds me of the days when we would call the nurses and check on Molly and they would say the same exact term. Molly cried most of the day. She liked painting, coloring, music and circle time. But any time they changed activities she would start over again because she didn't know what was happening. We all made it through the first day. Tomorrow is her 2nd day and we are hoping it's a little better than the first but I'm not expecting it to be. In time she will learn to love it...I hope!
Heading into school for the first time : (
CARDIOLOGY: Six months goes by so fast. Today was her cardiology check up. I wasn't as nervous about this appointment as I usually am because she had already had her echo and he told us it looked great. Her appointment was at 9am. She had an EKG, which looked good, and was weighed and measured. She was 29.4 lbs and 35" tall. The cardiologist was very happy with how she looks and how well she is doing. Of course, there is still mild regurgitation on her mitral valve and a small VSD. He doesn't foresee her needing another open heart surgery any time soon...at least through her childhood years which is what he told us the last time. So that is reassuring. As much as I dread going to this appointment, it's a good reminder that not matter how much stress we have in our lives or how down we get about some things we are so lucky to still have this little girl with us today. We are also so fortunate to live so close to the #1 Children's Hospital in the country. Her next cardiology appointment is going to be in March and we have to go into Boston because they want her to be seen by EP for her pacemaker. He wants to know what their plan is long term...will it come out? will we wait for the battery to die before we do take it out? So I will be interested to see what they have to say about it. I asked about take her O2 monitor to FL with us and he told us it wasn't necessary. He told us to just enjoy our time there and she will be fine. When Molly was in the hospital for the 8 month stretch, I wish I had asked her cardiologist what he thought her life would've been like in 3 years. I don't think anyone would've predicted that she would be doing as well as she is and that makes me the proudest parent!
This is Dr. Rhodes, Molly's cardiologist. He has been with us since birth. We haven't always seen eye to eye but it's great to have someone that knows her so well, still involved in her care. The expression on his face explains just how wonderful she is doing today!
Over the next few weeks we will be finalizing our plans with Make A Wish and preparing for our trip to Disney. I can't wait for the three of us to be able to take a break from reality. No doctors appointments or therapy appointments! I hope Molly has the time of her life and doesn't pull anything while we are away!
Sorry for the winded update but she has been a busy lady! Thank you for the continued love and support during the last few months.
Kerry
PREOP: We had made the decision to have Molly put under anesthesia to have her g tube removed. We didn't do the closure because we didn't want to add any time to the procedure that wasn't necessary at this time. Her GI doctor is pretty convinced that it will close on it's own in time anyway so we will see. Her preop appointment was at 9am on Tuesday, September 3rd. Getting into Boston that early during the week is no joke. We met with the nurse and got her vitals checked which were perfect. Then we met with anesthesia who always tries to put the fear of god in you by giving you the worst case scenario. When she first saw Molly she said how great she looked and she wasn't expecting her to look like that based on her history. We signed consent and we were on our way.
SURGERY: Her surgery wasn't supposed to be until Friday, Sept. 6th but it was moved up to the 4th. This meant that she was going to miss her first day of school. I wasn't entirely sad about this but I would have liked it if she went about doing it a different way. We were his first case which was 9am. We had to be at the hospital by 7:30. Everything moved pretty quick. Before we knew it we were back in preop holding area waiting for the surgeon and anesthesia. The anesthesiologist said "she looks great...much worse on paper". I know it's supposed to be a compliment but really?! Child Life gave us some stickers to keep her entertained. She was so great. Never fussed once. I suited up and prepared to take her back. We walked back with anesthesia and they joked with her about her hair and tried to keep the mood light. I laid her on the table while she fought the anesthesia. She was watching Yo Gabba Gabba and was laughing and banging her legs to the music. Finally the turned the gas up some more and she drifted off to sleep. It is the hardest, most emotional thing I have to do for her. I gave her a kiss and met up with Jay and we walked out to the surgical waiting area. An area that we are all too familiar with. We checked in with the nurse liason who said "oh you've been here before haven't you?". Pretty sad when she recognizes you considering how many families they see in the course of a year. But hopefully she won't see us again for awhile. The procedure was quick and she handled everything great. Her O2 sats, blood pressure, heart rate and temperature were normal the entire time. He did look around while he was down there and saw some redness at the bottom of her esophagus and took a biopsy of it. He is thinking it's from reflux so we started her back up on Omeprazole. While she was under they were going to do an echo. She was do for one anyway and they can obviously get better pictures when she's not moving around. The entire thing was about an hour and a half. By the time we got to see her she was awake and crying but didn't require any oxygen. I climbed into bed with her to calm her down. She started vomitting...probably from all of the air in her belly. She fell back to sleep for about 45 minutes and woke up much happier. The surgeon gave the OK to go home but wanted cardiology to give the OK as well. The nurse contacted the on call fellow and no one wanted to make the decision so we had to wait for her cardiologist. He said if she looked as good as the echo then she can definitely go home so we were discharged by 2pm. She was back to herself by the next day!
OPTHAMOLOGIST: That Friday she had an eye doctor appointment. Not for any reason other than she's been through a lot and we don't know how it has effected her eyes. The worst that could happen is that she would need glasses...so I thought. We expected that she was going to need glasses because her left eye turns in from time to time. We met with two doctors. The first one was great. She held a card with 4 pictures on it and she had to match it to the correct image on the screen. She did pretty good for the most part. Some of the objects were similar and towards the end she was losing interest. She spent a lot of time taking pictures of her eyes and trying to see how bad her eye turned in. After she was done another doctor came in. She was asking me if Molly tilts her head back a lot to see. I said that she did it when there was something on TV that she hadn't seen before or if someone new walks into a room. I just assumed it was something she did and never thought it had to do with her sight. She asked me if she ever had genetic testing and I said "no". So many specialists have asked me that and I never asked why but it was really bothering me. She dialated Molly's eyes and sent us out into the waiting room. After 20 minutes she had us come back into the room and explained to me that she has something called A Pattern Esotropia. This is when her eye(s) turn in when she looks up and straight on but are straight when she looks down which is why she tilts her head to see when it's something she wants to see correctly. The way to fix it is with surgery. It took all that I had not to burst into tears. Just 2 days ago she was in the OR and now we were going to head back?!?!?!? I wanted to scream how unfair this all is for her. I asked her why she had asked about genetic testing and she said because a lot of cardiac kids end up needing glasses and she was curious what they had found out. So they wanted info...info they are never getting about my kid. They can use someone else's as a guinea pig for awhile. I think she knew I was upset and tried to make me feel better. She said that this is a common thing they find in kids this age and we can try glasses first. She isn't sure if they will do anything but it's worth trying. It's just a mild prescription because she's only mildly farsighted. She said if this doesn't work the procedure is completely elective and we can decide when we want her to have it done. The worse thing that would happen is that she wouldn't have depth perception. It would be a day procedure...except for Molly because of her history which is something we hear every time she goes into the OR. So we are going to try the glasses and see how it goes. Hopefully they will do the trick. I ordered them yesterday and they will be in in about 7-10 days...they are wicked cute!
FIRST DAY OF PRESCHOOL: I have dreaded this day for about a year. It's nothing something I wanted for her in any way...not this soon. But the day was here and I was not happy about it. I kept busy so I wouldn't stress about it. I just kept telling myself that the worst thing that would happen on the first day is that she would cry. Eventually she would stop. Jay has an amazing boss and sent him home so that he could be there for Molly's first day of school. We arrived at the school around 8:50. I saw here teacher but couldn't find the aide. The teacher said they switched aides so someone else would be taking care of her. WHAT?! This woman knows nothing about her! She doesn't know how crazy we are about germs, Purell, Lysol wipes! She came over and introduced herself but never asked a question. She took Molly from us and said she was going to be fine and took her inside. We never gave her a kiss, said goodbye...nothing. It was all very rushed. I handed her her backpack and told her that the Purell and Lysol wipes were in the front. Jay explained in the quickest way possible, and with her half listening, that Molly is immune compromised so please Purell her hands. Before we knew it she was gone. We had to go into the office and sign some papers so that she could start school. We were speaking with the director of Special Education and I told her how we weren't happy about them switching the aide. She didn't seem to care. We asked if we could walk by her classroom so we could hear if she was crying. I didn't want to because I didn't want that sound to haunt me until I could pick her up but it would've made Jay feel better so that's what we were going to do. Just as we were about to leave the principal came out and said she was just sitting with Molly. She was crying but they gave her a book and she was fine. Jay headed back to work and I cleaned the house to keep busy. With every second that went by I felt relief that my phone hadn't rang to come get her. I figured she was fine after 20 mins or so. I picked her up at 11:30 and the aide greeted me with Molly. I could tell she had been crying and asked her about it. She said she had a "rough day". I really hate that term because it reminds me of the days when we would call the nurses and check on Molly and they would say the same exact term. Molly cried most of the day. She liked painting, coloring, music and circle time. But any time they changed activities she would start over again because she didn't know what was happening. We all made it through the first day. Tomorrow is her 2nd day and we are hoping it's a little better than the first but I'm not expecting it to be. In time she will learn to love it...I hope!
CARDIOLOGY: Six months goes by so fast. Today was her cardiology check up. I wasn't as nervous about this appointment as I usually am because she had already had her echo and he told us it looked great. Her appointment was at 9am. She had an EKG, which looked good, and was weighed and measured. She was 29.4 lbs and 35" tall. The cardiologist was very happy with how she looks and how well she is doing. Of course, there is still mild regurgitation on her mitral valve and a small VSD. He doesn't foresee her needing another open heart surgery any time soon...at least through her childhood years which is what he told us the last time. So that is reassuring. As much as I dread going to this appointment, it's a good reminder that not matter how much stress we have in our lives or how down we get about some things we are so lucky to still have this little girl with us today. We are also so fortunate to live so close to the #1 Children's Hospital in the country. Her next cardiology appointment is going to be in March and we have to go into Boston because they want her to be seen by EP for her pacemaker. He wants to know what their plan is long term...will it come out? will we wait for the battery to die before we do take it out? So I will be interested to see what they have to say about it. I asked about take her O2 monitor to FL with us and he told us it wasn't necessary. He told us to just enjoy our time there and she will be fine. When Molly was in the hospital for the 8 month stretch, I wish I had asked her cardiologist what he thought her life would've been like in 3 years. I don't think anyone would've predicted that she would be doing as well as she is and that makes me the proudest parent!
Over the next few weeks we will be finalizing our plans with Make A Wish and preparing for our trip to Disney. I can't wait for the three of us to be able to take a break from reality. No doctors appointments or therapy appointments! I hope Molly has the time of her life and doesn't pull anything while we are away!
Sorry for the winded update but she has been a busy lady! Thank you for the continued love and support during the last few months.
Kerry
Subscribe to:
Posts (Atom)