Monday, December 31, 2018


I am sitting here at 12:34am on December 31, 2018, and wondering how another calendar year is coming to a close.  I looked back on my other New Years Eve posts and they all convey the inner conflict with wondering how another year has flown by as fast but has gone just as slow.  This year, however, I feel as if I couldn't quite keep up with all of the changes.  It seems like 2018 was a year with the most change, with the most ups and downs, and filled with the most uncertainty.  Without sounding as defeated as I feel, I feel 2018 was the year that I realized there really are some things that are impossible to overcome.  It isn't to say that 2018 was the year I gave up, but more the year I realized some things just need to be set free.

2018 was the year of more hospitalizations than 2017, with the longest one being 22 days.  It was the year she experienced her first ambulance ride and the year she experienced her first status epilepticus event due to a 2-hour long seizure.  It was the year I felt like my disappointment towards CDKL5 as an entity grew leaps and bounds due to the limitations this lack of protein has caused for her body.  In 2018 her overall health was all over the place and it is hard to make heads or tails of what if anything it might mean for what could potentially be in store for us.

In 2018 we added a new Endocrinologist to her already lengthy list of doctors.  It was the year we found out she had 5 active fractures at one time and they weren't from anything someone did to her.  It was the year she was diagnosed with having osteoporosis and having the bones of a 90-year-old woman.  It was also the year we were attempting to strengthen her physical capabilities and were left with a beautiful gait trainer sitting in the garage with her brand new only worn twice AFOs sitting on the handlebars due to her inability to weight bear because of her still unhealed wedge compression fracture on her spine.  2018 was the year we agreed for her to have a bisphosphonate infusion in the hopes it would help improve her bone strength, but instead, she is sadly still experiencing the side effects. 

2018 was the year she was granted the ability for her to be in her happy place more often than not by being gifted her very own swim spa in our backyard by Make a Wish.  It was the first year we participated in Make a Wish's "Walk for Wishes" and raised $2,000 for them.  It was the year we donated a wagon to Phoenix Children's Hospital and had a license plate placed with CDKL5 so we can continue to raise awareness of a growing but still rare community needing research to help those who are impacted.

In 2018 we learned Sonzee's CVI score fell tremendously; a score that is known to not waiver, yet she has suffered so many seizures, had so many medication changes, and experienced so much over the year that it is not so surprising that her vision would be negatively impacted.  She wore her glasses regularly and patched various amounts throughout the year.

2018 was not her smiliest year, but it was during the year that her smile came back when I wasn't sure we would ever see her real ones again. It was the year she went ice skating, started school for the very first time, and went to Dutch Wonderland in PA. 

In 2018 we had to start venting her stomach 24/7 as she was unable to tolerate even her own stomach acid.  She tried botox in her pylorus in hopes of helping with her motility.  She trialed multiple GI medications, and it was also the year that we finally demanded we do something more to address her GI pain.  2018 was the year she began TPN for an undetermined amount of time.  It was after 3 weeks her GI system appeared to thank us for the assistance and for making that decision.

During 2018, Sonzee went through (and failed) an additional four seizure medications.  It was the year we broke our rule of not having her take more than two seizure medications simultaneously and she ended the year on four.  It was the year we tried CBD (again) and maybe this time it will help her!?

2018 was a year that for some reason hit me down really hard.  It was a year that I feel drained what little hope I might have had, yet attempted to restore it in bits and pieces in various ways.  It was the year I feel took a huge toll on my psyche, my anxiety, and my spirit.  2018 was a really tough year in a lot of ways and it is a year I am ready to close the chapter of.  Moving into the next chapter of 2019 with CDKL5 by our side is a fearful prospect because we really don't know if it will make 2018 and all the years prior look like a huge blessing.  It is a gamble we have no choice but to make, and one I will take with a fake smile on my face in hopes that the days of 2019 will be kind to our little bear and make it become real. 

While I am apprehensive to see what lies ahead for Sonya's Story in the new chapter of 2019, I am also eager for the potential.  I am hopeful that 2019 will grace us with some semblance of calmness and be kind to us among whatever chaos is thrown our way.  I am hesitantly looking forward to the blank pages that lay before us and pray that only happiness, joy, and positive reporting will fill the next 365 pages.

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