I try not to be superstitious. It seems silly... but I found myself knocking on wood a lot last week as I sang the praises and progresses of Cecily to her medical team. I was so proud of her and everything she has accomplished. She is doing so very well. She has been healthy, happy and strong - and did I mention healthy?
This week we had Cecily's J-tube removed! Hip Hip Hooray! We have been so looking forward to this day... so excited to have this nightmare, leaky, trouble-some tube removed so we can hopefully provide Cecily some peace and comfort. The tube has not been used in more than six-months so we had the support of the team and her surgeon to close up shop! During the pre-op appointment we discussed options and decided to try for a non-surgery removal. It had some risks - but we decided to go for it!
And then the shoe dopped. It started with a small round of vomiting and progressed into something larger. What a rough few days for sweet Cecily. The bugs this time of year are nothing short of awful. The sleep deprivation, the fevers, the vomiting and just plain yucky feelings have had our little princess in a horrible state. We were not sure if this would result in an emergency surgery OR if this was just an alarming coincidence. It turns out the sudden upset was just a virus - not tube removal related - but it led to some tense moments and the realization that, "just a virus"... can lead to a very nasty, painful and horrible few days.
It is just a reminder to celebrate the good days and also a testament to good we've had it lately! The suffering Cecily has endured recently was almost a constant two years ago. In fact, there is no way she would have been strong enough to weather this storm at home... but now she can! We were so happy to be able to keep her at home where she is more comfortable vs. running back to the hospital for help. Thank you to our amazing family - Grammy and Grandpa - for once again coming to the rescue!
Prior to this onset Cecily's potty training was hitting an all-time high! She is even flushing the potty when she is all done and giving us a pat-pat-pat! She is so happy and so proud! I was not sure this day would come and we have A LOT of work ahead... but she is showing us she is ready if we just believe and give her a chance.
Her signing continues to amaze me. Over these last few days I was asked to update the amount of words Cecily can sign. I have to admit I was even shocked as I went to do the list - AND I forgot a tone more. We watched all of her signing videos today and she impressed me with her recall! She is sick and yet she is still paying attention, absorbing the information and trying, trying trying! No one can say that Cecily does not give her all every day. She inspires me to do more, be better, and to also try, try try!
There are days lately where all I want to do is crawl into bed... the sleep deprivation is brutal and it makes me be a not so nice person to be around. I find myself struggling during the day to put on a smile and to remember my manners. I hear people whining over things that don't matter and my tolerance is at an all-time zero. I find myself whining and I hate myself for it - Cecily is the one suffering! So I will invoke the spirit of Cecily and try, try try!
And then there is Cason. It has been a rough week. He had a lot less attention as the focus was squarely on keeping Cecily out of the hospital. But did Cason cry, complain or have a well deserved fit? In the words of Pete the Cat, "Goodness No..." He just kept rocking in his shoes... I love that kid! I can be having what feels like the worst day ever and he throws his hands in the air, shakes his bootie and flashes me his toothy grin and I can't help but smile, smil smile! He is a gift, a joy and a blessing. Than you God for sending us Cason.
And then there is Noah - the kid that started it all! He loves Cecily so much and I hated seeing him worry about her. He was so worried that Cecily would have to go away again to the hospital. The older he gets the more appreciation he has for the abilities he has. He realizes how hard Cecily has to work to communicate, move and eat. He was so excited that Cecily had a feeding tube removed and is now very confident that we'll be able to remove the other one, too. His optimism is so sweet and precious. He continues to amaze me with his compassion. He loves having a baby brother that idolizes him but he is still his little sister's biggest cheerleader!
We have had one hell of a week! My wonderful Mom was in hospital twice, Cecily was very ill and we've had our fair share of "other stuff" happening... but when the week comes to a close there is one thing that remains true. There may always be Detours Ahead - but we'll be tackling them together as a family.
Onwards & Upwards!
This week we had Cecily's J-tube removed! Hip Hip Hooray! We have been so looking forward to this day... so excited to have this nightmare, leaky, trouble-some tube removed so we can hopefully provide Cecily some peace and comfort. The tube has not been used in more than six-months so we had the support of the team and her surgeon to close up shop! During the pre-op appointment we discussed options and decided to try for a non-surgery removal. It had some risks - but we decided to go for it!
And then the shoe dopped. It started with a small round of vomiting and progressed into something larger. What a rough few days for sweet Cecily. The bugs this time of year are nothing short of awful. The sleep deprivation, the fevers, the vomiting and just plain yucky feelings have had our little princess in a horrible state. We were not sure if this would result in an emergency surgery OR if this was just an alarming coincidence. It turns out the sudden upset was just a virus - not tube removal related - but it led to some tense moments and the realization that, "just a virus"... can lead to a very nasty, painful and horrible few days.
It is just a reminder to celebrate the good days and also a testament to good we've had it lately! The suffering Cecily has endured recently was almost a constant two years ago. In fact, there is no way she would have been strong enough to weather this storm at home... but now she can! We were so happy to be able to keep her at home where she is more comfortable vs. running back to the hospital for help. Thank you to our amazing family - Grammy and Grandpa - for once again coming to the rescue!
Prior to this onset Cecily's potty training was hitting an all-time high! She is even flushing the potty when she is all done and giving us a pat-pat-pat! She is so happy and so proud! I was not sure this day would come and we have A LOT of work ahead... but she is showing us she is ready if we just believe and give her a chance.
Her signing continues to amaze me. Over these last few days I was asked to update the amount of words Cecily can sign. I have to admit I was even shocked as I went to do the list - AND I forgot a tone more. We watched all of her signing videos today and she impressed me with her recall! She is sick and yet she is still paying attention, absorbing the information and trying, trying trying! No one can say that Cecily does not give her all every day. She inspires me to do more, be better, and to also try, try try!
There are days lately where all I want to do is crawl into bed... the sleep deprivation is brutal and it makes me be a not so nice person to be around. I find myself struggling during the day to put on a smile and to remember my manners. I hear people whining over things that don't matter and my tolerance is at an all-time zero. I find myself whining and I hate myself for it - Cecily is the one suffering! So I will invoke the spirit of Cecily and try, try try!
And then there is Cason. It has been a rough week. He had a lot less attention as the focus was squarely on keeping Cecily out of the hospital. But did Cason cry, complain or have a well deserved fit? In the words of Pete the Cat, "Goodness No..." He just kept rocking in his shoes... I love that kid! I can be having what feels like the worst day ever and he throws his hands in the air, shakes his bootie and flashes me his toothy grin and I can't help but smile, smil smile! He is a gift, a joy and a blessing. Than you God for sending us Cason.
And then there is Noah - the kid that started it all! He loves Cecily so much and I hated seeing him worry about her. He was so worried that Cecily would have to go away again to the hospital. The older he gets the more appreciation he has for the abilities he has. He realizes how hard Cecily has to work to communicate, move and eat. He was so excited that Cecily had a feeding tube removed and is now very confident that we'll be able to remove the other one, too. His optimism is so sweet and precious. He continues to amaze me with his compassion. He loves having a baby brother that idolizes him but he is still his little sister's biggest cheerleader!
We have had one hell of a week! My wonderful Mom was in hospital twice, Cecily was very ill and we've had our fair share of "other stuff" happening... but when the week comes to a close there is one thing that remains true. There may always be Detours Ahead - but we'll be tackling them together as a family.
Onwards & Upwards!
RSS Feed
