Wednesday, November 12, 2008

It's on it's way!

Man, I was on such a roll last week...three posts in three days! What happened?! LOL

Well, doctor appointments, more eye injuries (my own this time), and (sigh) the never-ending computer issues happened! :)

I took Austin in for a follow up with the gastro doc...we saw the nurse practitioner -which was fine because I could actually understand her! We're going to stick with the yogurt and get another stool sample to make sure the bacteria is's one of those highly resistant little boogers. Then, a follow up in 6 wks. She also suggested we try to gradually switch Austin to a milk based formula (from soy) before introducing whole milk. He's not digging that one so much! I have to mix it in with his soy or he gags. yuck...

I think I mentioned in my last post that I still hadn't "seizure-proofed" Austin's crib. Well, as you can see in the pic, Mom and I finally came up with a quick fix...egg crates and strips of fabric! It's obviously not completely seizure-proof, but it's much better than before. Since it's a sleigh-type crib, the wide (and solid) strip of wood in the front made me an absolute nervous wreck. When he would wake up at night, I could just picture him standing there holding on and having one of those slams right into it. It got so bad to the point where he spent most nights with me on the couch or in my bed. But, I'm happy to report that since Nana fixed him up, we've been sleeping through the night again...most nights anyway! :)

I'd also like to mention that I received an anonymous comment about opening Austin a PayPal account for medical donations. It never crossed my mind and I wouldn't even know where to begin to do that (I'm technologically challenged!)...But, it really touched my heart just knowing that there is a supporter out there that thought of this and wants to help my Austin. I'm so thankful for all of these people (even if I don't know who you are!) that pray for us and offer their assistance everyday. It's the support system that cushions us during this difficult experience. I've received encouragement and prayers from people I've never even met. I'll never forget the day I received that special card and prayer in the mail right after Austin was diagnosed. People that I had never met (who learned of Austin's diagnosis through prayer group) from all the way in Tennessee, gathered to pray for my family. Then not too long after that, I received a precious hand-made quilt from the same family. I remember that day vividly. Man, I was distraught over everything. I was realizing the ACTH wasn't working and probably not going to, Austin's spasms were through the roof, and I was an emotional basket case! Just as if He knew what would lift me up at that particular moment, that package and letter came. It brought tears to my eyes. That is true generosity. We also received another prayer quilt from a more local group as well. Just beautiful. It may not seem like much to the people doing these things, but to us, it's the world. I seriously can't imagine how we would be coping without the encouragement and motivation we've received from everyone. Thank you. Thank you. Thank you!


I am anxiously awaiting the arrival of the vigabatrin...which, as a matter of fact, I just learned has made it's way to NYC from the UK! I tell ya, I can't quit checking for tracking updates! I had a dream last night that it worked. A sign? Maybe. Or possibly just my obsessing over it? Probably! I'm trying to be realistic about this one. Although I'm eager and excited to get it going, I'm not going into it as naive as I was with the ACTH. I didn't even entertain the thought of it not working...and it was beyond devastating when it didn't. I know this time around that it might not be our "miracle drug". But, what do I have if I can't at least hope that it is "the one"? Hope is what keeps me going. I search endlessly for signs that it's going to be over soon. In reality, they may not really be signs... But, in order to stay positive, I assume that they are. It gives me strength and energy to keep fighting this battle. An example...I have a 3-D ultrasound of Austin framed in my living room. In the background of his face, it looks like another face to me. That's my comfort. I look at that when I'm sad or overwhelmed or feeling negative. It reminds me of an angel watching over my baby. It gives me hope.


JSmith5780 said...

I saw your comment over at Trevy's site about dosing. I will be glad to give you input that our Epileptologist gave us.

Generall a child will start at 250mg (half a tab or half a sachet) once a day. Depending on how eager the neuro is, they made start right at 250 twice a day. We always upped by half a packet every few days (maybe 5?) alternating increasing the morning and then the night dose.

Most kids should NOT need more than 100mg/kg of weight. Some neuros will push higher IF NECESSARY, but generally not past 125 mg/kg.

Most kids either react with some hyperactivity, or some sleepiness. Austin was hyper. The hardest part was he could NOT calm himself to fall asleep. It would be an hour or two ordeal every night. I don't say this to scare you. IF this happens to your Austin you can ask to do one of two things, either move his evening dose up before dinner or add some Melatonin. Austin would also wake 1-2 times a night. It never really improved until he was completely off the Vig.

Hope this helps, if you have any questions, just ask.

Also, if you got sachets, a half packet (250mg) is just shy of 1/8th teaspoon. We used to "cut the med" with a razor blade to measure it out (I felt like a druggie!) until we figured out the 1/8th tsp thing!

Mom said...

You are a pretty good writer! Your Daddy says you really have a way of putting words together eloquently! He says your words seem to come right from the heart. He told me to tell you that he's really proud of you for your strength and wisdom.

Ali said...

Hey Girl - I'm right on with what your Mom said.. You are amazing. I know that we don't talk every day but just know that the Stewarts and Fortenberrys do pray for you, Chad, and the little man every day.