Tuesday, December 28, 2010

Bitter sweet times

So it never fails...I always get sad after Christmas! Between all the excitement of spending time with everyone, and then it's over. Back to reality, boo! And we aren't having the best days with seizures around here. Things seem to be getting out of control. We are seeing a big increase, and aren't sure why? Landon has been on zonogram for almost a week. He goes up on the dose tomorrow. I'm not sure if it had anything to do with all the seizures or not? I'm finding it harder to decide these days. We go back to Philly next week, so I'm trying to wait to see what they say. I believe Landon will be done with the diet, and I'm praying his GI goes back to normal. He still isn't drinking, and isn't eating well. It's pretty much a battle each meal! No fun at all. Especially when his food is his medicine. On a good note, he isn't throwing up daily!!! That's exciting, so I would say the prevacid was a somewhat success. Also, Landon has been soooo happy, chatty, and all smiles! This always makes me happy! He continues to make slow progress. As all of you, I wish I could wake up and things be fixed! Too bad it isn't that easy!

Landon had a great Christmas! Actually we all did! I hope you all did as well! Prayers as always!


Thursday, December 23, 2010

Merry Christmas!!

I wanted to make sure I wished everyone a very merry Christmas!! We are really excited, and hope Landon enjoys it! We received a early Christmas present...a negative for c diff! It's definitely good news, and hopefully takes Landon in the right direction. We go back to Philly the beginning of January. We will discuss coming off the diet, and starting felbamate. He started zonogram on Tuesday, just to hopefully send some help until we get to philly. Our dr wanted to wait for felbamate until we are off the diet, being as they both compromise the liver. Maybe god will grant my wish and let Landon be seizure free with zonogram! Landons seizures have been getting out of control...so we hope to see improvement!

Thinking an praying as always!!! MERRY MERRY CHRISTMAS to all!!!!


Sunday, December 19, 2010

16 months old today

Today is Landons 16 month birthday! I try to recognize each month for him. Sometimes we watch the video from his birthday, or look at pictures. It's happy and sad all at once. Other than celebrating today, I'm continuing to prepare for Christmas! I'm really excited to see how landon reacts! I think he will enjoy it(I hope)!

We have another busy week of therapy, doctors appointments, and phone calls needed to be made! Landon has been on his prevacid for 12 days tomorrow...and still no bottle. He will drink a little liquid(4 ml) if I sprinkle it in his mouth. Def a tiny improvement, but not where we need to be! It looks like the diet may soon be a thing of the past. We also have to have him tested for c diff this week.
Hopefully it's negative!

We still continue to see almost daily seizures, and the odd movements continue. Please pray our next move is the answer! We have been told felbamate is our next step.Anyone have any experience with it? I'm nervous about the extreme side effects. But we need to try it with hopes of it helping his seizures!

I'm asking Santa for three things this year...negative c diff, and Landon drinking again, and seizure freedom...I don't think it's unreasonable?

I'm Thinking and praying for all of your Christmas wishes to come true! We love you all, and wish you a Very Merry Christmas!


Friday, December 10, 2010

C diff...again!

So Landon tested positive once again for c-diff. Fun fun...that means washing a million blankets, and articles of clothing of day. Wearing gloves and watching your every move changing his diaper. I know it could be worse, but it just add to the stress. So more medicine it is.

On a good note we had a great appointment with the GI specialist. He thinks Landon has acid reflux which is magnified due to the fat. He said Landon seems to have a high pain tolerance and his way of showing he doesn't feel good is refusing the liquids, and now fighting his food. He put him on Prevacid with hopes that we see results in about 10 days. If not, we will discuss discontinuing the diet with hopes the drinking begins after we stop the diet. We really liked the doctor and felt comfortable with him! That's always a great thing!

Things have been good other than all of the GI things. We baked cookies today...actually I baked, Landon watched tv. We had fun either way!

Hope all is well with everyone! Prayers as always!


Wednesday, December 8, 2010

4 AM

So Landon has decided tonight that sleep is over rated, and he doesn't want any! Ugh, I hate losing sleep! And none tomorrow since we see the GI specialist in Pittsburgh. I'm really anxious to see what he thinks is going on. I'm always nervous to get a new doctor and be disappointed. I'm sure you know what I mean...the doctor who acts as though you have no idea, won't let you get a question in, and makes you feel crazy. I feel awful after appointments like that, and right now I would most likely have a nervous breakdown if that were the case. I have so many thoughts, and am worried to hear anything negative!

Things have been extremely stressful since we started the diet over 8 weeks ago. I think it would be stressful by itself...but add the feeding tube, daily vomiting, numerous bm explosions a day, and extra phone calls and appointments. I don't want to give up on the diet, but it seems hopeless at this point. Especially since we are forcing it so much. How long did everyone else wait before they saw any result? I feel like at this point we would have seen a slight improvement. I'm trying to upload a video of some new odd movements...I'm worried it's a new seizure.

Hopefully I have time and energy to update later on what the GI doctor says! Praying as always!


Monday, December 6, 2010

My Santa wish

So it's been long overdue for me to update you all. I have been in a rug, and I THINK I'm finally coming out of it. I have been forcing myself to be in the holiday spirit. I haven't felt like shopping, decorating, wrapping, and I can't seem to get that warm excited feeling. I guess that takes me to why I'm so down these days.

Landon still hasn't had any improvement on the diet. And he of course isn't tolerating it at all. Now he is throwing up daily. He still hadn't drank anything in 8 weeks, so he continues to have the NG tube. He is going to the bathroom A LOT, even though he tested negative for C Diff. He also had a weird rash off and on, which I was told was eczema. Oh yeah, and he has been really fussy off and on. Not sleeping well some nights. His seziures are actually kinda getting worse. We are seeing a few more than usual, and they are pretty intense. He is also doing a very odd excited thing. Brent thinks it's normal, but I however have a bad feeling about it. It's when he is awake, which is different from his normal seizure pattern, and he is normally playing. His arms and legs stiffen and shiver, hands clinched, and his eyes stare at his right hand. It's on a few seconds and it's back to playing, and then 5-10 seconds later it happens again. Our neurologist said he though it was normal last appointment, but it's really odd? Anyone else see seizures kinda like what I'm describing?

We are taking Landon to Pittsburgh Wednesday to see a GI specialist. Our neurologist also forewarned me that the bar to stay on the diet is pretty high at 3 months. He said you need to see decreased seizures and toleration of the diet, which Landon has neither. So he said we may come off the diet sooner than planned. I'm just hoping I get my happy, healthy eater back when we come off!

I know our family has so much to be thankful for, but this dreary weather doesn't help at all with my sad days. I am very thankful tha Landon is continuing to make slow progress! I had a dream last night that he pulled himself up next to the Christmas tree! Even though it was a dream it was amazing...what are the odds Santa can help me with that? We had an amazing thanksgiving(being with family makes me feel better) so we are looking forward to Christmas! Hope everyone is doing well! Saying our prayers for everyone as always!