Thursday, July 3, 2014

Christmas in June and July!

Sooo much great stuff to update and so little time!! 

*The Epilepsy Walk:  Our team raised over $6,000 for the Epilepsy Foundation of Missouri and Kansas. I cannot begin to tell you what that means to us.  Luke's seizures have gotten better since we started the new medicine.  But he has had some breakthrough seizures, although, not horrible ones.  So we've increased it twice now and are hoping that is it for awhile. But I don't want to dwell on that except to say thank you for providing money and awareness that will hopefully be beneficial to him sooner than later!  We also had close to (maybe more than...) 70 people come to walk with our families and SOOOO many more than that offering words of support and encouragement.  It was a truly special day and I can't find the appropriate words to express our appreciation for all everyone did.  So thank you. 

*New Jersey:  The boys and I had the opportunity to go and visit with a special PMG friend, Michelle, and her family.  She started out as a PMG friend and quickly developed into just a friend - someone who I would like to believe I would have somehow met even if PMG wasn't in our lives.  I've been fortunate to develop several special friendships since Luke's diagnosis and that has been a silver lining in the situation.  Anyway, we flew out to New Jersey to spend the week together.  It was such a great time.  We were treated like royalty by both her family and her husband's family.  They all follow Luke's story and offer words of support and prayers in good and bad times.  It was nice to put faces with all the names and have some quality time together - although I'm pretty sure we STILL never finished an entire conversation! 

*Stroller:  I've been researching special needs strollers for awhile now.  Luke walks well but he tires easily and when he's struggling with seizure control he gets especially clumsy and even more tired.  He's fallen several times and the spot on his head that he hits now has a permanent knot.  Upon researching special needs strollers, we discovered that they're crazy expensive!  Imagine my surprise and joy when insurance assured me that with a doctor's note it would not be a problem to cover the stroller. I know, I know...silly me!!  Well, first of all, it takes for-ev-er!  UGH!  Second of all, after waiting forever, they denied it because we already have a wheelchair and a stroller would be a convenience item.  (For those of you who know us, you might be scratching your heads right now, wondering...wheelchair???)  We DON'T have a wheelchair!  I called, thinking it's an easy fix.  I know, I know...silly me.  Again!  They told me we'd have to go through a whole appeal process which would again take for-ev-er!  AAAGH!  I might've lost my cool a bit here....within minutes of hanging up with them I get a text from my friend, Andrea (side note about her below), saying she might have a surprise for me.  Long story but she happened to check a special needs website and find a woman who was giving away the exact stroller we wanted.  GIVING AWAY.  Not selling - GIVING AWAY COMPLETELY FREE!!  Andrea immediately texted her and was the first one and GOT LUKE THE STROLLER!!!  We picked it up today and it's wonderful.  He has so much more room and will be able to use it for a long time.  I tried to give her - Rebecca - something, anything for the stroller and she refused.  She is an awesome person with two boys who both have Dandy Walker Syndrome.  I don't know how to thank her appropriately so I'll be looking for a way to pay it forward in her honor.
Rebecca, one of our own personal Santa Clause's!  We LOVE YOU!

Speaking of Andrea - her daughter, Willow, who has the same gene mutation as Luke and PMG, is in the hospital right now.  So while Andrea was (is) in the hospital taking care of sweet Willow, she was also looking out for Luke and thought of him immediately when she saw the stroller available.  We are so blessed to have friends like her in our lives.  Please say some extra prayers for sweet Willow.
Willow's first sweet smile in DAYS! 

Dan, Luke and I met with his new epileptologist last week.  Dr. Weisenberg is amazing. She's very direct which we loved.  She has several plans in the back of her mind if the Onfi doesn't do the trick.  Since he's having breakthroughs we're increasing the Onfi again and we're actually going to start decreasing one of his other meds.  I know that sounds strange but the fact is that he's on too high of a dose of his other two meds anyway and sometimes *that* could cause seizures.  He's also becoming increasingly lethargic and clumsy which is worrisome. So we're taking a deep breath, saying a prayer and giving it a try!  Wish us luck. 

Overall as you can read...we have way more good than bad.  I'm always thankful for that! Hope everyone is enjoying their summer!  We sure are!  Love to you all!