Oh yes you can. Now you may wonder why I say that. Well, this is most likely going to be my longest (and most typo-riddled) blog post ever! So grab some snacks, smoke 'em if you got 'em and get ready to do some serious reading!!
You can fall in love in the span of three short days....I know because I did. Madly, deeply, crazily in love. My love spans this country and the globe! I looked into many eyes this weekend and I will tell you what I saw......intelligence, understanding, love, and many bright beautiful spirits! Tell me, if you tomorrow awoke to find that you had lost the ability to speak, to move your arms and legs, etc. would you still be able to communicate? I think not. But I found this past weekend the children with canavan can still communicate! They do so with their eyes and they touch your soul! If you ever get the chance to meet a child with canavan then I implore you to do so. I think you would be amazed at these wonderful children.
Ok so now we are going to take a trip in the time machine to Saturday May 28th. Around five o'clock that evening Lily developed a fever of 100.6. Not too high, but any fever is too high when you have epilepsy. So I gave her something for the fever and it went back down. However, soon she started complaining that her ear hurt. So I called the nurse and she told me to take her in to be seen. So I did and she was diagnosed with an ear infection. We were given an Rx and off we went. We filled the rx and came home. Lily fell asleep on the ride and I noticed when I put her on the couch that she felt really hot again, so I took her temp again. 102.4 under the arm and I was not supposed to give her anything again for the fever for another 45 minutes. So another call to the nurses (love being able to call them!). Once the nurse learned that Lily had Epilepsy she said to give her the meds now so I did. It didn't matter however. One hour later Lily had her first Febrile seizure. It lasted somewhere between 14 seconds-1 minute (long story over why it's so hard to tell and since this post is going to be really long anyway I am just going to leave it out). She was taken back to the hospital by our buddies from the fire station (who Lily had just visited that day!) and was released shortly there after. The fever disappeared after the seizure and never returned.
Jump ahead now to that Tuesday, May 31. Lily awoke with a rash all over her legs. It's not unusual for either one of my kids to break out in a rash but this was not a kind of rash I had seen. So I couldn't take her to school until I got it looked at and made sure it was something contagious, so back off to the ER again! Three times in three days! Poor kid! But Lily LOVES the hospital, thank goodness! Anyway, long story short they told me that Lily had Hand-Foot-and-Mouth disease and that she could not be around other children for two weeks! Oh no, what about our trip?!? Tracy didn't buy it especially since Lily's rash looked like it was disappearing (with HFM disease the rash stays around for 7-10 days, not hours!), so he called a couple of her different Dr's and they said that it didn't sound like that at all, to try and see if she could see her Ped that day. Well her Ped was full and unable to see her so Tracy took Lily to StatCare (for those of you outside our area, it is one of those Urgent Care places). The StatCare in Jackson twpship has never steered us wrong so I was totally ok with this. Lily got seen by one of our favorite Dr.'s there, Lisa Vaughn. She took one look at Lily's throat and said we need to do a strep test. And yeah it came back positive. She never had HFM disease or an ear infection! Her ears were clear and the rash was almost completely gone. I had changed laundry soaps over the weekend and yes they did know that at the ER. Anyway, because Lily had been on antibiotics since that Saturday, she was not longer contagious and we could still go to NY. So we did!
The Conference was amazing! The hotel was beautiful, the food was great, the rooms were beautiful and comfortable! Our schedule for the weekend was great too! They were somethings schedule to do but there was a lot of time for the families to spend time together, getting to know each other, etc. On Sunday we got sometime to spend with the researchers which was very nice. Many of the researchers were very warm and outgoing. Honestly I really did except some stuffy old men in white lab coats (I know shame on me for generalizing) and I was pleasantly surprised that there were NO stuffy old man there in white lab coats.
Lily was a big hit with everyone, she is so outgoing and very much her father's daughter. She was of a great interest to many of the researchers. Several of the researchers I spoke with feel that Lily's Epilepsy and the Canavan are NOT related due to my husbands family history of Epilepsy. If that is the case (and there is no way to know for sure) then Lily would be totally symptom free. Many also told me that they feel Lily is the key to better treatment and if not outright curing the disease. We are gearing up for some lab work here.
Now we are home and I am more determined than ever to raise awareness and help these amazing kids.
So I will let you in on a little not-so secret, lol. I am now working on creating the Fight For Lily's Future Foundation! This may be a slow process because I don't want to mess anything up, but I got a lot of great help in my court (Thank you Sarah and Michelle!!) as well as Akron Legal Aid (Thank you whoever decided to included non-profits at Legal Aid!!), so we will begin to slowly creep forward in this endeavor.
And in other news we also have one more fund raiser coming up! It's a poker run and you can see all the details at http://www.facebook.com/home.php#!/event.php?eid=125880944161730
Ok well this wasn't nearly as long as I thought it was going to be. I have to be up early tomorrow and am running outta steam. So good night!!
As always, thank you so much for reading!!
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