April 2014- Continued Success

Chase has changed our perspective on development so much as we get so excited and celebrate the smallest of his accomplishments.  It is because we know just how lucky he is and we will never forget that.

Another trip to the Mayo Clinic in Rochester early in March brought more relief and exciting news. Chase had a second completely normal EEG!  We now can wait 6 months until the next visit which would bring us to right around his 2nd birthday in September.  If that EEG is normal, we will discuss weaning him off of the topirimate.  Although this was amazing news, the neurologists' developmental assessment of Chase was not as positive as that of our local therapists. They repeatedly mentioned the future being very challenging as Chase will need a lot of attention and will have trouble in school.  We can understand they don’t have the most positive outlook from our own research on infantile spasms and their comments about what they usually see happen with these children. While this was disheartening to hear, it put me in enough of a panic to come back home and reevaluate if we are doing everything possible to help Chase.  We increased the frequency of his therapies and set different goals.  All we can do is have faith that Chase will be unlike most outcomes.   

Another normal EEG!

1st ER visit for being a normal crazy boy!

 The biggest shift recently is Chase no longer having so many special needs but becoming a normal toddler boy.  We were starting to work on placing a direct support person to help full-time in his daycare room because he required much more work than the other children his age, especially with feeding and going to sleep.  You can imagine our joy when the daycare told us they did not need it anymore because he was catching up so fast!  He started using a therapeutic weighted blanket to sleep which helps tremendously.  We are fortunate to be in an exceptional daycare with small class sizes that has gone above and beyond to accommodate his needs.  

A teddy bear holding the check presented to Jacob

A friend who works at a local bank asked me to participate in the bank's "Pay It Forward" program.  I received $1,000 to give to an individual, family or organization in the community.  I chose the almost 2-year old boy, Jacob, that we had been connected with in our area, who also had Infantile Spams.  On St. Patrick's Day I brought the check over to the family and it was one of the best days of my life.  This encouraged Tom and I to think about how else we could personally give back and help other children suffering from epilepsy.  We decided that each year we would give a percentage of the profits from our family lighting business to to an organization that helps children with epilepsy, and we are making plans for that starting this year. 

I found this old video of Chase from last October after Chase had taken ACTH for only one month and it is amazing what it does to the body.  Luckily he was back to normal within only a few months.