We are officially busier than ever and with a new baby on the way I'm admittedly panicked about the future. I know we can do it... I know we have an amazing family that is there to support us... but there are days when Cecily has rough patches when I worry more than one could ever imagine!
Over the last 6 week period I counted that Cecily had more than 50+ appointments...a normal week is about 5-6 ... but when you add on all the assessments she needed for school (yes - Cecily is already getting ready for school!) and her medical appointments which were intensive this month - it has been truly insanely busy. We have been making almost daily trips down to Radys... We're grateful that we have amazing insurance and an equally great medical team but there are times when I am balancing more than one should and I'm praying/hoping something does not fall off the plate. (alas it does... but hopefully the less important stuff!)
We are nervous about her IEP on Friday... but we are equally optimistic about the next phase for Cecily because she LOVES kids and while I'm not ready for her to go to school (not even for a few hours a day)... I have a feeling she is more than ready. She loves playing with Noah - and she loves playing with Noah's friends at his pre-school... so I am sure playing with kids at her own school would be a dream come true. We'll be giving an update on her IEP next week. My goal is not to cry during the session... I only cried at one assessment (cringe!). It is just so hard to explain what your child is not doing... and the process is very deficit-based. For our family we ONLY focus on what Cecily is doing because 1) we are proud of her and how hard she works to do what we take for granted and 2) it is a better way to live in general. This process (while the team has been so lovely and amazing and supportive) has been emotionally draining for me. I want the assessors and everyone to know what a gift Cecily is and that she is so much more than a checklist of tasks.... and that her cognition transcends whether she can stack blocks, or hold objects with the correct grasp. (lalalala... rambling away here!)
The good news is after a rather rough month Cecily seems to be in a much better place. She is getting so physically strong and she is showing weekly progressions. This week she began giving everyone the high-5! This is a gift because 1) we love interaction and her response and 2) it is helping her over-come her aversion to people putting their hands on her hands. Noah loves it and we've been able to starting playing the "buzz" game with her... something we've done with all of the babies in our extended family and it is even more fun to see how much Cecily likes it, too.
Noah is getting very excited for baby Cason's arrival. He thinks my body looks funny and he likes to feel Cason kick when he pushes on my belly. He can't wait to have a baby brother and I just hope his enthusiasm survives those first few weeks at home when you're sleep deprived, exhausted and perhaps playing soccer into the dark hours is not first on your list of fun things to do!
We've got some exciting things for Cecily's Closet brewing. We've got a room makeover next weekend for a lovely little girl and one in early March for triplets! Can you imagine having triplets? I can't imagine having typical triplets let alone three children that require extra special care. We can't wait to share the stories of these inspirational families. We are also very thrilled with some new folks that have reached out to help us manage Cecily's Closet. We're realizing we are going to have to delegate a lot more in the coming months to keep up with all the requests. Thank you to the amazing people who have offered to help us try out new ways to scale our operation. We're looking forward to letting go of the reigns a little and seeing how it goes!
To those that have asked... no we have no intention of stopping with a new baby. Will there be an adjustment period? Most definitely. But where there is a will there is a way. We are committed to helping make our little community in San Diego a better place for children with special needs.
Onwards and upwards!
Over the last 6 week period I counted that Cecily had more than 50+ appointments...a normal week is about 5-6 ... but when you add on all the assessments she needed for school (yes - Cecily is already getting ready for school!) and her medical appointments which were intensive this month - it has been truly insanely busy. We have been making almost daily trips down to Radys... We're grateful that we have amazing insurance and an equally great medical team but there are times when I am balancing more than one should and I'm praying/hoping something does not fall off the plate. (alas it does... but hopefully the less important stuff!)
We are nervous about her IEP on Friday... but we are equally optimistic about the next phase for Cecily because she LOVES kids and while I'm not ready for her to go to school (not even for a few hours a day)... I have a feeling she is more than ready. She loves playing with Noah - and she loves playing with Noah's friends at his pre-school... so I am sure playing with kids at her own school would be a dream come true. We'll be giving an update on her IEP next week. My goal is not to cry during the session... I only cried at one assessment (cringe!). It is just so hard to explain what your child is not doing... and the process is very deficit-based. For our family we ONLY focus on what Cecily is doing because 1) we are proud of her and how hard she works to do what we take for granted and 2) it is a better way to live in general. This process (while the team has been so lovely and amazing and supportive) has been emotionally draining for me. I want the assessors and everyone to know what a gift Cecily is and that she is so much more than a checklist of tasks.... and that her cognition transcends whether she can stack blocks, or hold objects with the correct grasp. (lalalala... rambling away here!)
The good news is after a rather rough month Cecily seems to be in a much better place. She is getting so physically strong and she is showing weekly progressions. This week she began giving everyone the high-5! This is a gift because 1) we love interaction and her response and 2) it is helping her over-come her aversion to people putting their hands on her hands. Noah loves it and we've been able to starting playing the "buzz" game with her... something we've done with all of the babies in our extended family and it is even more fun to see how much Cecily likes it, too.
Noah is getting very excited for baby Cason's arrival. He thinks my body looks funny and he likes to feel Cason kick when he pushes on my belly. He can't wait to have a baby brother and I just hope his enthusiasm survives those first few weeks at home when you're sleep deprived, exhausted and perhaps playing soccer into the dark hours is not first on your list of fun things to do!
We've got some exciting things for Cecily's Closet brewing. We've got a room makeover next weekend for a lovely little girl and one in early March for triplets! Can you imagine having triplets? I can't imagine having typical triplets let alone three children that require extra special care. We can't wait to share the stories of these inspirational families. We are also very thrilled with some new folks that have reached out to help us manage Cecily's Closet. We're realizing we are going to have to delegate a lot more in the coming months to keep up with all the requests. Thank you to the amazing people who have offered to help us try out new ways to scale our operation. We're looking forward to letting go of the reigns a little and seeing how it goes!
To those that have asked... no we have no intention of stopping with a new baby. Will there be an adjustment period? Most definitely. But where there is a will there is a way. We are committed to helping make our little community in San Diego a better place for children with special needs.
Onwards and upwards!
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