Slacker

9/17/15

Slacker

So sorry for the lack of posting updates things have gotten a little crazy with me going back to work and dr appointments. As for Emma she had her blood drawn 2 weeks ago and it showed that her phenobarbital levels were high so we could not increase her dose anymore and she was still having spasms. It also showed some sort of infection which we have had the unhappy chance of meeting this coulprit....cold/flu :(. To address the medication situation, she started zonisamide for the infantile spasms on Sept 4 and by Sept 7 we stopped seeing the spasms YAY!!!!! We were so happy to not have to watch her have those anymore they are so hard to watch and they seem to last FOREVER!

About the cold/flu we have sadly encountered it showed up at the end of last week. Poor thing had throwing up (yes throw up not spit up) and a million blow outs, sorry TMI. I was getting worried due to her getting dehydrated but luckily she started eating again and is wetting diapers. We will meet with the neurologist on Oct 5 and her pediatrician on Oct 7. She had a follow up blood draw today to check to make sure she is still doing ok with the drop of steroid, phenobarbital and zonisamide. Poor girl had the first arm fail in the blood draw and I swear that needle was in her arm for about a minute and she just kept moving the needle around trying to find a vein I thought I was going to pass out. And then here is Emma just sucking away on her pacifier and watching Litten Einsteins #toughgirl. The second arm was much better and still no tears, she is one tough little girl! Love her to pieces!

I have had a lot of people ask if we are still raising money to help with her medical needs and yes we are the link is still on the right side of this page but here is the direct link as well. Thanks so much for the support! YouCaring Account (link)

Here are some photos from the latest happenings. ENJOY and EMBRACE LIFE!