Hard Couple of Days With Seizures

This weekend has been great having my mom and sister here, but Emmalin has had a couple of REALLY tough (at least tough for us) seizure days (really afternoon/eveningish) the past couple of days.  I think she had around 6 or 7 "hard ones" within 11 hours yesterday and she had around 4 hard "ones" the day before that (right now, that is a lot for Emmalin).  And to top it all off, Emmalin started a "new" seizure type last night.  Unfortunately that happens with CDKL5 (new seizure types will just show up randomly).  I was hoping not to have to change any medications around until after the intensive was over, but I don't think that's possible now.  I will definitely be calling Dr. Weisenberg on Monday and figuring out what we need to increase next....sigh.  I HATE SEIZURES!!!

Week #2 - Complete

This week Emmalin did great!!  I definitely am seeing some progress in how strong she is getting in her head and trunk!  She still has a ways to go, but she is DEFINITELY getting stronger!!

                                                                         God is Good!!

Day #10 - Intensive Therapy

Today didn't go as well as yesterday (Thursday - Day #9 was, by far, the best day of this week).  She still worked REALLY hard!!!  And she definitely LOVES that bubble column with this specific switch (that I'm trying to find - it's rectangle and angled) that allows her to turn it on and off herself.  Even though you could tell that she was extremely tired, she still worked for about an hour at the bubble column and had some of her best for the day during that hour!!

Day #9 - Intensive Therapy

WOW!! What a great day!!  Emmalin did AMAZING today!!  It was the first time that she really never "zoned out".  She worked so hard and at the end of the session today, she got to play with a switch button that would make the bubbles turn on and off on one of the bubble columns.  I knew Emmalin liked the bubbled columns, but the switch took it to a completely different level!!  She worked so hard on her sitting up and watching her try to figure out how the bubbles were turning on (she figured out how to do it by the end) was SO cute!!!  Jarrad and I have to figure out a way to get Emmalin one of those (I actually found one in a Christmas tree for $400 + Tax - I know what part of the next benefit money will be going for)!!  I've never seen her work so hard on sitting!   She also played with it for about 30 mintues AFTER having a really hard seizure!!!  I have 2 videos in this post and you can definitely tell which one is after the seizure because she is so much more wobbly, but she still did it!!  It blew me away on how hard she worked and how long she worked after the seizure!  I know I've said it before, but she's my hero!!


Click Here to see a short video of Emmalin playing with the bubble colum by hitting a switch (before her seizure)

(the clicking sound is Emmalin pushing down on the switch)

God Is Good!!!

Day #8 - Intensive Therapy



We are finding that she does better when Em doesn't use her arms. 
And sometimes holding them out front really helps too!!

Sorry I'm a little late to post this.  Yesterday went great!  Emmalin had about an hour where she was kind of "out of it" and but did amazing at the beginning and end!!  She is definitely getting stronger everyday!!

                                                                  God is Good!!

Day # 7 - Intensive Therapy

Em holding the microfiber lights :)

Em holding her light tube and working hard!

Today was a great day!!  Emmalin worked really hard and lasted the entire 3 hours!!!  I'm SO proud of her!!  I can't wait to see how tomorrow holds :)



Day #6 - Intensive Therapy

So today wasn't that great of a day as far as therapy goes.  We had to start 45 minutes late because I couldn't get Emmalin awake and then you could just tell Emmalin was having an "off day". I hope tomorrow is better!!!



Working on some rotation