Yesterday was a really tough day.  It was one of those days where everything just compounds on top of one thing after another and you are le...

Prior to the official CDKL5 diagnosis, we were told by the epileptologist who originally read Sonzee's EEG that she was most likely not ...

When my oldest was a toddler she had these rubber squeaking building blocks that she would play with.  She would take the blocks and build a...

For once I just wanted to be able to place the blame on something other than CDKL5.  I really felt it was time for once in her life to get a...

These last few weeks have been filled with a lot of steps forward mixed with a couple of punches to the gut.  It is so hard to make it throu...

When my oldest daughter turned three a tradition was started for her to attend the Nutcracker ballet.  When our 2nd daughter turned three, s...

On Sunday morning I placed Sonzee's little brother on his tummy for a little workout.  Full disclosure, I don't do it as much as I ...

I do not know the specific amount of times I have uttered the words "I quit" over the past 4 weeks.  I have actually perfecte...

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is ...

Whenever Sonzee goes through months of multiple daily seizures I do get numb to them.  Some of them bother me more than others, but overall...

Lately I have been really struggling with the whole concept of having faith.  It is hard for me to keep hope and be optimistic when I...

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give h...

It is 10:45pm on March 20, 2017 and we are in room 8128.  We do not normally face north so this is a nice change of view for me, instead of...

We spent two days this week at children's hospital of Colorado because they have a center of excellence for Rett Syndrome, CDKL5, and FO...

I am always in awe of how the brain works.  I never really appreciated parts of its inner workings until watching a baby have frequent seizu...

Whenever   Sonzee's   s eizures start to occur more often and increase in intensity, it is only a matter of time before my tightly wove...

It is the second week of February and this will be my third official post of the month.  I would like to say it is because I do not have mu...

Hope.  Another small string of characters that play with my emotions on a daily basis.  I rely so heavily on this word and its definition, ...

I knew I would find myself here again.  The place where only the 5-character string of CDKL5 can take me.  Sitting here with a pit lodged i...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am the times over the past five days that I remembered to use the seizure tra...