Jude's Dr called me today to talk to me about the medication, and how he really feels it's best for Jude. I guess he had heard I was struggling with giving Jude this drug. He said that the deaths from Felbatol have been age 14 and older, and most have only been in women with other underlying issues liek Lupus. I explained to him that as a couple Mike and I would have a very difficult time if Jude had a severe reaction to a medication we gave him. He understood where I was coming from, but he then said the lack of medication could also cause huge problems. He believes that Jude will never progress if he continues to have the amount of seizures he is currently experiencing. If Jude doesn't progress then the outcome will probably not be favorable.
So Mike, and I are still at a loss, but we are being pushed towards the medication route. I still struggle wondering if there is anything surgically that can be done in the future that will help Jude. Jude is a very sweet baby, and he giggles, and smiles but I still hope one day I can see him progress further. I snapped this picture of Emily holding Jude, and it looks like Jude is standing, what a sweet sight! Let me point out that Jude kept his head up for about five seconds prior to it falling right after I snapped the picture. It's a strange relationship with emotions in the world of special needs. You are so thankful for such small things, but at the same time so angry at the large milestones you miss.
Regardless, I am so happy my little boy can smile and laugh, it warms my heart!
Emily's interview came out with CBS 11, http://firstname.lastname@example.org. I just love how articulate my child is, and how unafraid she is of the camera. I am however, disappointed they didn't mention her website, or how she can accept donations. She cannot keep sending out Smile Boxes, without donations. If you watch the video you can see that she involved other kids this time, and even had them sign a postcard letting the patient know that particular person made their box. Emily also received two letters from little girls yesterday that had received her boxes. One little girl was still in the hospital, and Emily emailed her back asking if they could be pen pals while she is in there, I thought that was sweet. She also received a letter from the little girl who had a stroke, she is in the hospital in Arkansas. She hates that the kids are sick, but she likes hearing from those that receive her boxes. I think the letters inspire her to continue her cause. Now, we just have to figure out how to achieve her goal of getting Smile Boxes nationwide!