Sofie is slowly getting better day by day, at least during the daytime hours anyway. Night is another story.
She is still being a super picky eater. She turns down almost everything. She will eat egg whites with cheese, some ice cream, some Pediasure, some mushed up pancake, puree lasagna (????) and brown sugar. The latter was because Mommy gave up and I don't care what she eats anymore as long as it has calories. She is a little happier during the day and has been playing more and more. Ainsley seems to have gotten over the lack of attention from Mommy and Daddy and is being very helpful with Sofie.
Nighttime is a totally different thing. Sofie falls asleep no problem but wakes up at some point during the night. She then is very restless and coughs and sounds like she is choking for the rest of the night. The fluid just seems to build up in her mouth and she has problems breathing and swallowing when she is laying down. I have tried propping her up on pillows but she is so restless she just rolls all over the place. Needless to say, whoever is lucky enough to be sleeping with her, does not sleep much. That would be me :)
Her surgeon has now prescribed prednisone to try and reduce her swelling and secretions a little quicker. Hopefully that will help with her breathing at night and we can all get some sleep :)
Wednesday, August 28, 2013
Monday, August 26, 2013
...one more thing
I have had great support from friends and family, but, I noticed that several people, including relatives, sent me text messages after the surgery saying that they would have texted earlier but didn't want to bug us. We want to be bugged. It is such a lonely place when you are in the hospital with a sick child or home recovering. You really need someone to just reach out and say hi. You are doing awesome. Don't get me wrong, we had a lot of support and a lot of good wishes. I just wanted to reach out to those who think you may be bugging us.....you aren't ..........we love it.............we are floundering and have no idea what we are doing. Just say hi, thinking of you :)
I have no idea what to call this post
Sat August 24
I went for a run today. It was the worst run of my entire life except for maybe the time as a teenager when I fell and had rocks embedded in my knee. Today was over 90 degrees but there was a wind and I really needed to get out of the house after being home for 5 days without leaving except to hang out at a hospital. Running always seems to clear your head and you have nothing else to do but think and listen to Pink blaring in your ears. Half way through the run I started crying. I had no idea how much I had been keeping locked up inside. It was very cathartic and something I really needed. I feel better now, empowered. I can handle almost anything :)
This post will probably take me several days to finish. I just do not have the time right now. I will post the date I write each section, but, I will follow the events in chronological order.
Sofie's surgery lasted just over 2 hours and went very well. At some point in the pre op stuff it was mentioned that she would have a palatopharyngoplasty and not just a pharyngoplasty. The difference is that instead of her palate being just elongated and narrowed, they would be taking the prior palate repair apart and redoing it and elongating it and narrowing it. I missed all that. I don't know if I was out of the room, not listening or had just blocked it from my consciousness because it was more than I could handle. I didn't find out until 2 days later. Some things happen for a reason. She has over 100 stitches in her tiny little mouth :(
She woke up in the recovery room and proceeded to scream bloody murder for 2 1/2 hours. Nothing would touch the pain at all. She would fall asleep for 2 minutes and then wake up and scream. Her breathing was awful and she couldn't swallow so all she did was gurgle. Suctioning her was difficult with all the sutures in her mouth. We had been trying to stay away from morphine as it made her itch before. Not an allergic reaction, just itchy. It is a side effect. It was the only thing that worked and it would only give an hour of pain relief but could only be given every two hours. It was a nightmare and I felt so bad for her.
Sun August 25
We finally reached our room where the afore mentioned scenario went on for the rest of the day and all night. She was itching like crazy from the Morphine, but, the Benadryl seemed to take the edge off. She would have about an hour to hour and a half of comfort and then she would get agitated and start screaming. Her breathing sounded awful when she was sleeping. During the night her O2 sats dropped into the 80's periodically so she ended up on oxygen all night. The alarm on the O2 monitor went off all night and none of us got much rest, including Sofie. By morning we were convinced that we were staying another night. She was still on morphine and oxygen and I just couldn't see us going home that day at all. Suddenly, right before the doctors made rounds, she perked up. Jim and I were looking at each other with a stunned look on our faces. This child knows what to do to be sprung from the hospital. She continued to improve throughout the morning but we had to bribe her to drink. We told her we could disconnect her IV pump is she drank half of her apple juice. She did. The clincher to the deal was when she started riding the tricycle up and down the hallway towing her IV pole and pump. That is not an easy task let me tell you. She doesn't slow down to let you and the IV pole catch up. We made it home by 4:00 pm. It has been up and down since then. This is by far the most difficult and painful surgery she has had to date. It has been hard, hard on everyone.
Mon August 26
Sofie finally turned the corner today, or so I hope. She has perked up a little more. She is eating a little bit and is finally drinking fine. We are going to try just Tylenol and Ibuprofen tomorrow. She snores and coughs all night long and sounds like a freight train when she is breathing. She it irritable and angry and every time she has to take any medicine, it is a fight. My Mom and I had to hold her down today. I haven't had a full nights sleep or even half a nights sleep for a week now. Neither has Jim and neither has Sofie :) Ainsley is completely out of synch and stressed out. She is acting up and being very defiant. Today was better for that too. Baby steps.
I want to extend a very heartfelt and warm thank you to my Mom and Dad and Aunty Joyce who came down this week to help us with Ainsley and Sofie. We would have been lost without them. I am overwhelmed with their thoughtfulness and generosity of their time and love. We had a warm meal at dinner every night, dishes were done, laundry was even done and I didn't have to buy or go out to get any groceries. I love you Mom and Dad and Aunty Joyce and we truly appreciate all you have done for us and our girls. I am going to miss the muffins :)
I am not going to sugar coat it, this was the toughest thing we have ever done. None of the other 3 trips to the OR remotely prepared me for this. It is brutal and tiring. Nothing like her prior palate repair. She is very angry and keeps asking me WHY as she points to her throat. It breaks my heart. We will not know for 2-3 months whether or not the surgery worked. If it didn't, we will be going back to the OR again. She will be prone to sleep apnea and will not be able to breath through her nose for at least 2-8 weeks. Her voice and the tone of her voice has totally changed. I was not prepared for that. I am hoping that once the swelling goes down it goes back to normal, but, only time will tell. I miss her little giggle and her voice. This is so much harder to write than I thought it would be. Wow, this is hard. The words that she was able or almost able to say are much clearer now which is a fantastic blessing and very uplifting. The phrases and words that she did not say very well or properly have totally changed. It is like she is speaking a totally different language and none of us understand it at all. It is so frustrating for both her and us. All the things I used to understand or be able to figure out are just gone now! I looked in her mouth and almost started crying. I don't know why it is so different than the palate repair? She had just as many stitches for that surgery as she does for this one. It just really bothered me to see it looking so differently. How do you explain to a 4 year old who is much wiser than her years why Mommy and Daddy took her to have her mouth fixed again.........baby steps :)
I went for a run today. It was the worst run of my entire life except for maybe the time as a teenager when I fell and had rocks embedded in my knee. Today was over 90 degrees but there was a wind and I really needed to get out of the house after being home for 5 days without leaving except to hang out at a hospital. Running always seems to clear your head and you have nothing else to do but think and listen to Pink blaring in your ears. Half way through the run I started crying. I had no idea how much I had been keeping locked up inside. It was very cathartic and something I really needed. I feel better now, empowered. I can handle almost anything :)
This post will probably take me several days to finish. I just do not have the time right now. I will post the date I write each section, but, I will follow the events in chronological order.
Sofie's surgery lasted just over 2 hours and went very well. At some point in the pre op stuff it was mentioned that she would have a palatopharyngoplasty and not just a pharyngoplasty. The difference is that instead of her palate being just elongated and narrowed, they would be taking the prior palate repair apart and redoing it and elongating it and narrowing it. I missed all that. I don't know if I was out of the room, not listening or had just blocked it from my consciousness because it was more than I could handle. I didn't find out until 2 days later. Some things happen for a reason. She has over 100 stitches in her tiny little mouth :(
She woke up in the recovery room and proceeded to scream bloody murder for 2 1/2 hours. Nothing would touch the pain at all. She would fall asleep for 2 minutes and then wake up and scream. Her breathing was awful and she couldn't swallow so all she did was gurgle. Suctioning her was difficult with all the sutures in her mouth. We had been trying to stay away from morphine as it made her itch before. Not an allergic reaction, just itchy. It is a side effect. It was the only thing that worked and it would only give an hour of pain relief but could only be given every two hours. It was a nightmare and I felt so bad for her.
Sun August 25
We finally reached our room where the afore mentioned scenario went on for the rest of the day and all night. She was itching like crazy from the Morphine, but, the Benadryl seemed to take the edge off. She would have about an hour to hour and a half of comfort and then she would get agitated and start screaming. Her breathing sounded awful when she was sleeping. During the night her O2 sats dropped into the 80's periodically so she ended up on oxygen all night. The alarm on the O2 monitor went off all night and none of us got much rest, including Sofie. By morning we were convinced that we were staying another night. She was still on morphine and oxygen and I just couldn't see us going home that day at all. Suddenly, right before the doctors made rounds, she perked up. Jim and I were looking at each other with a stunned look on our faces. This child knows what to do to be sprung from the hospital. She continued to improve throughout the morning but we had to bribe her to drink. We told her we could disconnect her IV pump is she drank half of her apple juice. She did. The clincher to the deal was when she started riding the tricycle up and down the hallway towing her IV pole and pump. That is not an easy task let me tell you. She doesn't slow down to let you and the IV pole catch up. We made it home by 4:00 pm. It has been up and down since then. This is by far the most difficult and painful surgery she has had to date. It has been hard, hard on everyone.
Mon August 26
Sofie finally turned the corner today, or so I hope. She has perked up a little more. She is eating a little bit and is finally drinking fine. We are going to try just Tylenol and Ibuprofen tomorrow. She snores and coughs all night long and sounds like a freight train when she is breathing. She it irritable and angry and every time she has to take any medicine, it is a fight. My Mom and I had to hold her down today. I haven't had a full nights sleep or even half a nights sleep for a week now. Neither has Jim and neither has Sofie :) Ainsley is completely out of synch and stressed out. She is acting up and being very defiant. Today was better for that too. Baby steps.
I want to extend a very heartfelt and warm thank you to my Mom and Dad and Aunty Joyce who came down this week to help us with Ainsley and Sofie. We would have been lost without them. I am overwhelmed with their thoughtfulness and generosity of their time and love. We had a warm meal at dinner every night, dishes were done, laundry was even done and I didn't have to buy or go out to get any groceries. I love you Mom and Dad and Aunty Joyce and we truly appreciate all you have done for us and our girls. I am going to miss the muffins :)
I am not going to sugar coat it, this was the toughest thing we have ever done. None of the other 3 trips to the OR remotely prepared me for this. It is brutal and tiring. Nothing like her prior palate repair. She is very angry and keeps asking me WHY as she points to her throat. It breaks my heart. We will not know for 2-3 months whether or not the surgery worked. If it didn't, we will be going back to the OR again. She will be prone to sleep apnea and will not be able to breath through her nose for at least 2-8 weeks. Her voice and the tone of her voice has totally changed. I was not prepared for that. I am hoping that once the swelling goes down it goes back to normal, but, only time will tell. I miss her little giggle and her voice. This is so much harder to write than I thought it would be. Wow, this is hard. The words that she was able or almost able to say are much clearer now which is a fantastic blessing and very uplifting. The phrases and words that she did not say very well or properly have totally changed. It is like she is speaking a totally different language and none of us understand it at all. It is so frustrating for both her and us. All the things I used to understand or be able to figure out are just gone now! I looked in her mouth and almost started crying. I don't know why it is so different than the palate repair? She had just as many stitches for that surgery as she does for this one. It just really bothered me to see it looking so differently. How do you explain to a 4 year old who is much wiser than her years why Mommy and Daddy took her to have her mouth fixed again.........baby steps :)
Monday, August 19, 2013
Surgery......again :)
Tomorrow is Sofie's sphincter pharyngoplasty to correct her Velopharyngeal Insuffiency. Say that fast 3 times :)
This is her fourth trip to the OR in the last 15 months. This is probably the hardest one. I don't know if it is because she is much more aware of what is going on now or if it is just Mama jitters. She was very strange at her pre op appointment last week. Very cautious and not her usual lively self. She was very much aware that something was up and this was very familiar to what she did last month. Nothing gets by this kid. Jim sat her down and had a talk with her this morning about what was going to happen tomorrow. She nodded her head and then went on her way.
All her other surgeries have been the typical ones that all cleft kiddos go through. This one is slightly different in that not all cleft kids have to have this surgery. The other surgeries were pretty routine. Fix the lip, palate, hernia and teeth and away you go to speech therapy. Of course, we made a pit stop in audiology but I digress. This one is stressing me out. So much is riding on this surgery. How she will talk and be able to pronounce words and consonants. To me at least, this one is major. Lots riding on it. Of course our surgeon is wonderful and I totally trust him. He even told me that this surgery is totally adjustable and tiny modifications can be made at any time, which, is another surgery at another time! Not what I needed to hear, but necessary.
It is 11:50 pm and I need to go to bed. I think I am afraid to lay down with my thoughts. I really don't want to do this again, but, I know I have to. Sofie is so much tougher than I am. I wish I could do this one for her and spare her the pain again :)
This is her fourth trip to the OR in the last 15 months. This is probably the hardest one. I don't know if it is because she is much more aware of what is going on now or if it is just Mama jitters. She was very strange at her pre op appointment last week. Very cautious and not her usual lively self. She was very much aware that something was up and this was very familiar to what she did last month. Nothing gets by this kid. Jim sat her down and had a talk with her this morning about what was going to happen tomorrow. She nodded her head and then went on her way.
All her other surgeries have been the typical ones that all cleft kiddos go through. This one is slightly different in that not all cleft kids have to have this surgery. The other surgeries were pretty routine. Fix the lip, palate, hernia and teeth and away you go to speech therapy. Of course, we made a pit stop in audiology but I digress. This one is stressing me out. So much is riding on this surgery. How she will talk and be able to pronounce words and consonants. To me at least, this one is major. Lots riding on it. Of course our surgeon is wonderful and I totally trust him. He even told me that this surgery is totally adjustable and tiny modifications can be made at any time, which, is another surgery at another time! Not what I needed to hear, but necessary.
It is 11:50 pm and I need to go to bed. I think I am afraid to lay down with my thoughts. I really don't want to do this again, but, I know I have to. Sofie is so much tougher than I am. I wish I could do this one for her and spare her the pain again :)
Sunday, August 18, 2013
Another interesting read
Here is another informative and interesting read
https://www.facebook.com/ConnectAkid/posts/475153969248023
https://www.facebook.com/ConnectAkid/posts/475153969248023
Saturday, August 17, 2013
Random thoughts
We just got back from a vacation to our home town. Two weeks in the Great White (not white this time of year) North. The weather wasn't that great. Cooler than normal and we only had 3-4 real good sunny days. The kids still had a blast playing with all their cousins and hanging out with family. Sofie had a couple of birthday parties while we were there. She turned 4 on August 14 and Jim and I celebrated our 20th wedding anniversary on the same day.
My Mom hosted a birthday tea party for Sofie's birthday party. We had tiny finger sandwiches, pickles and cupcakes. My Mom also brought out her fine bone china teacups for the party. They are 47 years old and were given to my Mom and Dad at their wedding. My Mom is a brave woman handing over antique tea cups to 6 kids with the youngest being 3 going on 4! When we placed the dainty pink teacup in front of Sofie, her eyes lit up and got as big as the saucer under the tea cup. It was an amazing look on her face, she couldn't believe that she got to drink tea (loaded with sugar) out of such a fancy cup. My Mom is still talking about the look on Sofie's face. It is moments like these that you come face to face with how different Sofie's life was before we became a family. Another other 3 year old would have had an amazed look on their face when handed a fine teacup. Sofie's look was still different. It was MORE! It is so hard to explain it. You had to have been there to realize how different it was.
I try explaining this to people, even family, but no one seems to really understand. You always get the answer of she is just 3 or she won't remember any of her past when she is older. Some memories will fade, but, I don't think the real terror of moving from place to place or from care giver to care giver will ever truly leave them. I don't blame people. It is hard to understand unless you have lived through an adoption. I just wish people would slow down and actually listen and try to learn instead of just dispensing advice that you never really asked for in the first place :)
Every once in a while, Sofie seems to lash out at me or push me away. It rarely happens in public or while others are around. It rarely happens to Jim, usually just me. You have to remember, she had female caregivers and males were usually in a position of authority so it was usually the female who left her or abandoned her. It is as if she needs to push me away just to see if I am actually going to stay. No, it is not typical 3 year old behavior or the need for independence or anything else. I have raised another child through the 3 year stage. It is much different and more intense. It never lasts and she is always sorry after and very affectionate. She is usually fine and I am the one who is emotionally hurt. I have learned to get over it quickly though and listed below is the reason why. I have figured out why she does it and I no longer take is personally. It actually makes me very sad for her.
I loved this analogy that was posted on the blog of an adoptive Mom. It sums it up just perfectly. You just have to use your imagination and imagine a child going through much the same process. You have to remember that Sofie went from the orphanage, to a hospital, to the healing home with Love Without Boundaries, back to the hospital, surgery, to LWB again and then finally to the main orphanage all with in 2 1/2 years.
http://thesweetfamilylife.wordpress.com/2013/08/16/wow-look-how-much-your-adopted-daughter-fits-right-in-and-what-attachment-really-looks-like/
A couple of funny things happened while we were on vacation. I was the recipient of probably two of the dumbest comments that another person has ever said to me. The comments didn't really upset me, I was more dumbfounded by them.
Sofie was at the park playing very nicely with a little boy who was a year younger than her. All was well until Sofie tried to play catch with the little boy and the golf ball that he brought along to play with. You can see where this is going, right! Yep, Sofie hauled off and threw the ball at the boy and nailed him right in the shin. She had this look on her face like why are you crying? You are supposed to catch the ball. I made her go over and apologize and give him the ball back. At this point, the little boys grandfather and I start talking. He asked me how old Sofie was and when we adopted her. First faux pas. He hasn't seen the Dad so how does he know she is adopted. Ainsley was nowhere around then either. I then told him our family story at which point he asked me " so you couldn't have kids then?"
Major faux pas on so many levels that I will not even get into it with everyone :) I then proceeded to point out Ainsley to him, not that it mattered but it was all I could think of saying as I was to floored by him comment to come up with a coherent answer.
Number two came from someone who knows my Mom and Dad so they will remain nameless and anonymous. Sofie was playing in their yard so I went over to check on her. She was having a blast and getting her nails done. The individual in question then started talking to me about Sofie and how wonderful she is. At that point, she turned to me and in front of all the kids, asked me if Sofie was SLOW. She actually spelled the word out loud right in front of her. She then scrambled as the look of my face must have been one of pure astonishment. She stated and I quote " not because of her speech but because of how she is walking." WHAT!!!! I told her that no, Sofie was developmentally on track and in fact she is probably able to figure out what you just spelled in front of her!!!!!!! I was dumbfounded and in shock. I really wanted to punch her lights out but I feared that it was not a good lesson to teach the children :)
I know that there was no maliciousness meant in either comment. I am sharing this with you to educate. Be very careful what you say to an adoptive parent and be even more careful what you say in front of an adoptive child. It is not fun to be singled out or to be labelled as different or abnormal. The same goes when an adoptive parent is reaching out talking to you telling you about their life. They don't want advice, they have Facebook for that, they want someone to just listen and even if you don't understand, for you cannot understand unless you have walked that walk, just listen and give a hug. That is all we really want. Someone to listen and say "that must be really hard to deal with." Empathy.
Thanks for listening :)
My Mom hosted a birthday tea party for Sofie's birthday party. We had tiny finger sandwiches, pickles and cupcakes. My Mom also brought out her fine bone china teacups for the party. They are 47 years old and were given to my Mom and Dad at their wedding. My Mom is a brave woman handing over antique tea cups to 6 kids with the youngest being 3 going on 4! When we placed the dainty pink teacup in front of Sofie, her eyes lit up and got as big as the saucer under the tea cup. It was an amazing look on her face, she couldn't believe that she got to drink tea (loaded with sugar) out of such a fancy cup. My Mom is still talking about the look on Sofie's face. It is moments like these that you come face to face with how different Sofie's life was before we became a family. Another other 3 year old would have had an amazed look on their face when handed a fine teacup. Sofie's look was still different. It was MORE! It is so hard to explain it. You had to have been there to realize how different it was.
I try explaining this to people, even family, but no one seems to really understand. You always get the answer of she is just 3 or she won't remember any of her past when she is older. Some memories will fade, but, I don't think the real terror of moving from place to place or from care giver to care giver will ever truly leave them. I don't blame people. It is hard to understand unless you have lived through an adoption. I just wish people would slow down and actually listen and try to learn instead of just dispensing advice that you never really asked for in the first place :)
Every once in a while, Sofie seems to lash out at me or push me away. It rarely happens in public or while others are around. It rarely happens to Jim, usually just me. You have to remember, she had female caregivers and males were usually in a position of authority so it was usually the female who left her or abandoned her. It is as if she needs to push me away just to see if I am actually going to stay. No, it is not typical 3 year old behavior or the need for independence or anything else. I have raised another child through the 3 year stage. It is much different and more intense. It never lasts and she is always sorry after and very affectionate. She is usually fine and I am the one who is emotionally hurt. I have learned to get over it quickly though and listed below is the reason why. I have figured out why she does it and I no longer take is personally. It actually makes me very sad for her.
I loved this analogy that was posted on the blog of an adoptive Mom. It sums it up just perfectly. You just have to use your imagination and imagine a child going through much the same process. You have to remember that Sofie went from the orphanage, to a hospital, to the healing home with Love Without Boundaries, back to the hospital, surgery, to LWB again and then finally to the main orphanage all with in 2 1/2 years.
http://thesweetfamilylife.wordpress.com/2013/08/16/wow-look-how-much-your-adopted-daughter-fits-right-in-and-what-attachment-really-looks-like/
A couple of funny things happened while we were on vacation. I was the recipient of probably two of the dumbest comments that another person has ever said to me. The comments didn't really upset me, I was more dumbfounded by them.
Sofie was at the park playing very nicely with a little boy who was a year younger than her. All was well until Sofie tried to play catch with the little boy and the golf ball that he brought along to play with. You can see where this is going, right! Yep, Sofie hauled off and threw the ball at the boy and nailed him right in the shin. She had this look on her face like why are you crying? You are supposed to catch the ball. I made her go over and apologize and give him the ball back. At this point, the little boys grandfather and I start talking. He asked me how old Sofie was and when we adopted her. First faux pas. He hasn't seen the Dad so how does he know she is adopted. Ainsley was nowhere around then either. I then told him our family story at which point he asked me " so you couldn't have kids then?"
Major faux pas on so many levels that I will not even get into it with everyone :) I then proceeded to point out Ainsley to him, not that it mattered but it was all I could think of saying as I was to floored by him comment to come up with a coherent answer.
Number two came from someone who knows my Mom and Dad so they will remain nameless and anonymous. Sofie was playing in their yard so I went over to check on her. She was having a blast and getting her nails done. The individual in question then started talking to me about Sofie and how wonderful she is. At that point, she turned to me and in front of all the kids, asked me if Sofie was SLOW. She actually spelled the word out loud right in front of her. She then scrambled as the look of my face must have been one of pure astonishment. She stated and I quote " not because of her speech but because of how she is walking." WHAT!!!! I told her that no, Sofie was developmentally on track and in fact she is probably able to figure out what you just spelled in front of her!!!!!!! I was dumbfounded and in shock. I really wanted to punch her lights out but I feared that it was not a good lesson to teach the children :)
I know that there was no maliciousness meant in either comment. I am sharing this with you to educate. Be very careful what you say to an adoptive parent and be even more careful what you say in front of an adoptive child. It is not fun to be singled out or to be labelled as different or abnormal. The same goes when an adoptive parent is reaching out talking to you telling you about their life. They don't want advice, they have Facebook for that, they want someone to just listen and even if you don't understand, for you cannot understand unless you have walked that walk, just listen and give a hug. That is all we really want. Someone to listen and say "that must be really hard to deal with." Empathy.
Thanks for listening :)
Subscribe to:
Posts (Atom)