Save The Date!

UPDATE: 

Well we traveled to Austin this past weekend for Harper's round of ABM lessons.  We took a stomach bug with us that we didn't know we had and finally made it home!  We are all well and Harper did manage to get at least three sessions in over the weekend.  Had we not been ill she could have managed at least one more but we just couldn't make it.  

DIET: 

Harper's diet made an interesting turn this weekend as well!  The ketogentic diet works to help stop seizures by your body being in Ketosis, burring fat as fuel.  You test for this state by checking ketone levels from the urine with a test strip.  We have never really been able to get Harper into a full ketotic state to see if her seizures would stop until we removed ALL carbohydrates from her diet.  When we did this and reached her high ketone level her seizures worsened....until Friday.  She got sick on Friday, and like most CDKL5 children, when she is sick her seizures stop or lesson significantly.  Well she is better now and her seizures have not returned to "normal" so far.  She is currently having one visual seizure per day.  Her blood sugar is stable and the rest of her labs look great despite the no carb diet so we are going to keep her on this formula for another week or two and see what happens.  

THERAPY: 

Some other good news: we were able to start Pediatric Aquatic Therapy this week.  Problem: Harper is so relaxed in the pool she does nothing but float herself to sleep!  This is not how Aquatic Therapy is supposed to go so she better get to movin! ;) 

LILY: 

Some issues are arising now with my little princess that I had so hoped to avoid.  First we found her a new preschool geared more toward her academic needs and she started at the end of May.  She goes twice a week and HATES IT!! She tells me every week she does not want to go there and has been exceptionally clingy to me since she has started.  She wakes up on school nights with nightmares crying "I don't want to go to Rosewood Academy"  

Also this last Friday, I was able to take Lily to gymnastics and dance just me and her.  My mother-in-law Shirley was nice enough to keep Harper for me so I could have this time with just Lily.  On the way home from her activities she said "I am very concerned about Harper's Blood Sugar."  I said; "Okay, what is that concerns you."  She replied, "Are you going to have to do that to me." As she saw last week for the first time us check Harper's blood sugar in her toes.  Lily gets very protective of Harper's treatments and does not like it when she thinks you are hurting her.  Even though Harper didn't show signs of agitation there was blood and Lily did not like that.  Anyway, I told Lily no we would not be checking her blood sugar.  She said, "Is it because I'm not sick."  I said, "Yes"  At this point Lily got very hostile and angry, speaking firmly she began to ask many questions in a row "Well Why is Harper sick, Why does she have seizures all the time, What is this diet and you need to fix it!"  I realized at that point this is beyond me.  Despite our willingness to be open with Lily about Harper's differences it wasn't enough.  We are currently searching for a way to help Lily deal with this issue and also trying to figure out what we are going to do about this school situation.  

UPCOMING EVENTS!