We hope you all had a very Merry Christmas, or Hanukkah or whatever it is you may celebrate this time of year. We certainly did! I will say it was our best
Christmas yet! We've had a few bumpy ones lately and to have the family together was a big blessing and to watch all of the children delighted with everything - from Christmas cookies to presents - to playing with all of the new toys was so much fun... but it didn't compete with our big news!
Christmas yet! We've had a few bumpy ones lately and to have the family together was a big blessing and to watch all of the children delighted with everything - from Christmas cookies to presents - to playing with all of the new toys was so much fun... but it didn't compete with our big news!
Miss Cecily is no longer taking anti-seizure meds as of Christmas! Ho ho ho! Now that is a Christmas miracle that we won't soon forget. More than two years ago Cecily was taking about 8 drugs a day - not all for seizures - but it was a lot! As of now, she is only on one drug for her continual GERD but she is no longer on Topamax - known in the medical field as dopamax for its dopey impact on patients.
When Cecily began taking her anti-seizure meds she went into a mental coma. Her personality seemed hindered and at times she didn't seem mentally present. We knew the drugs were for the greater good and we had hope that one day this day would come. We had been warned that it may never come...that Cecily could potentially be faced with the intellectual IQ of a baby for life and that she was at risk for a host of other seizures - beyond infantile spasms. It was a lot of information to digest and we know that those risks still exist today... but we remain hopeful and optimistic. We share this deeply personal information with the rest of the world to provide hope to those parents who may also receive what can sound like devastating news about their children and their prognosis. We have the greatest respect for Doctors. We know Cecily may not be alive today without the amazing medical team she has that watches over her growth and development. BUT... we also know that Cecily would not be where she is today without the strong belief that we maintain as a family that she can and will do anything that she sets her little mind to. She needs time. She needs help. But one thing is for sure - she is proving the impossible possible time and time again so we "wont' stop believing!" (Jay - that was for you!)
We are so excited about this news. Each day is a new awakening for Cecily and for her brother, Noah. Today we got Cecily new shoes (orthopedic stuff...) to help her walk. After the shoe store visit we headed to Del Mar for a family beach outing. Cecily, for the first time, climbed up the playground stairs all by herself! She was in pursuit of her favorite person in the world - Noah. Are these magic shoes? Maybe. Magic child? Most definitely. (For the record she was not walking she was crawling and pulling to a stand but this is an amazing feat for our little one). What else? She is eating more and more by mouth every day. It is still small bites but they are bites. And better yet - she is not spitting it up on her bib or drooling it out of her mouth. And after every bite she claps for herself and looks to see who is watching so she may receive her praise. Princess? Most definitely but we don't care. She has worked for the title and she darn well deserves it for the amount of work she does on a daily basis for the tasks that most of us take for granted.
We also celebrated my Mom who is almost finished with her cancer treatment. Both Cecily's provide us with daily inspiration to live to the fullest and to be grateful for every day you receive. They are daily presents that we can't take for granted!
We hope everyone has a very Merry Holiday season and we look forward to getting back to work in 2012.
Ho Ho Ho!
Onwards and upwards
When Cecily began taking her anti-seizure meds she went into a mental coma. Her personality seemed hindered and at times she didn't seem mentally present. We knew the drugs were for the greater good and we had hope that one day this day would come. We had been warned that it may never come...that Cecily could potentially be faced with the intellectual IQ of a baby for life and that she was at risk for a host of other seizures - beyond infantile spasms. It was a lot of information to digest and we know that those risks still exist today... but we remain hopeful and optimistic. We share this deeply personal information with the rest of the world to provide hope to those parents who may also receive what can sound like devastating news about their children and their prognosis. We have the greatest respect for Doctors. We know Cecily may not be alive today without the amazing medical team she has that watches over her growth and development. BUT... we also know that Cecily would not be where she is today without the strong belief that we maintain as a family that she can and will do anything that she sets her little mind to. She needs time. She needs help. But one thing is for sure - she is proving the impossible possible time and time again so we "wont' stop believing!" (Jay - that was for you!)
We are so excited about this news. Each day is a new awakening for Cecily and for her brother, Noah. Today we got Cecily new shoes (orthopedic stuff...) to help her walk. After the shoe store visit we headed to Del Mar for a family beach outing. Cecily, for the first time, climbed up the playground stairs all by herself! She was in pursuit of her favorite person in the world - Noah. Are these magic shoes? Maybe. Magic child? Most definitely. (For the record she was not walking she was crawling and pulling to a stand but this is an amazing feat for our little one). What else? She is eating more and more by mouth every day. It is still small bites but they are bites. And better yet - she is not spitting it up on her bib or drooling it out of her mouth. And after every bite she claps for herself and looks to see who is watching so she may receive her praise. Princess? Most definitely but we don't care. She has worked for the title and she darn well deserves it for the amount of work she does on a daily basis for the tasks that most of us take for granted.
We also celebrated my Mom who is almost finished with her cancer treatment. Both Cecily's provide us with daily inspiration to live to the fullest and to be grateful for every day you receive. They are daily presents that we can't take for granted!
We hope everyone has a very Merry Holiday season and we look forward to getting back to work in 2012.
Ho Ho Ho!
Onwards and upwards
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