Monday, March 19, 2012

More craziness

This last couple of months have been well a little crazy. We went to Boise and had some test done on Bren and had a very exciting guest show up! My little sis came waltzing up the hallway and I had to do a double take. I was in much need of some company. It was the longest week of my life. B had over 100 seizures in the first 3 days. We found out he has 6 different seizures. Crazy!!! We started him on some newly approved medicine and things were looking up. We had 2 free seizure days and then a little lapse and then 4 days without. His seizures did return but they were quick split second jerk seizures, which is much better than minutes seizures. Well now we are back to multiple seizures today we had 19 and 3 of the 6 seizures. They had been quickly progressing since his diet slip up on Thursday. Oh the diet we are on the modified atkins diet of no more than 10 carbs a day. It has been a little hard to come up with meals and even harder to not cheat for Bren. Today we finally are in ketosis yay which is good now if we can stay there. We may be starting his IVIG next week to see if that will help his seizure control. Now to the more craziness... My big sis just found out last week that her oldest has a really rare cancer that effects 1 in a million kids. Osteosarcoma " bone cancer ". She starts her aggressive chemo treatment tomorrow. She will have 3 months of chemo followed by surgery and 5 more months of chemo. Not that that isn't crazy enough my sis is 4 months pregnant and has to move 4 hours away so her and ash can be closer to the hospital for her treatments. This means a new ob and having a baby in the middle of chemo treatment. What is with our children contracting these really rare diseases? Hopefully this will be the last of our tragedies and we will have better luck. Now for some better topics. Sage is doing so much better with her reading and school work. She is growing so tall and turning into such a beautiful little girl. Emmett is our little entertainer. He is always doing the funniest things and making us laugh. Jordan is such a good big brother looking out for his siblings. He is so helpful with Bren and making sure he is ok. Chris n Jordan and my brother Jake went steelhead fishing last weekend and didn't ketch anything and again came home saying they hate it and never want to go again. Lol that's what they say every year. Jordan informed me today that they have been deciding if they want to go next weekend. Hehe I think they are addicted to fishing. Oh well that is good they have a hobby hopefully they will come back happier the next time and limit out. We got some baby chicks and Emmett is so funny with them he wants to hold them but they better not put there feet on his bare skin or they will get some flying lessons in as he chucks them across the room and if they peck him they get swatted of his lap faster than you have time to know what happened. But if they just snuggle under his are they get smothered with kisses. We have 8 chicks and there names are so funny Jordan's is pecker because he likes to peck the others, Brens is stomper because he doesn't care if the others are sleeping or in his way he stomps right over them, sages is Lilly well because she likes that name it was Lilly pad until the brother made fun of her, Emmett's is Nelson because he names everything that, then the other 4 are blondie, speckles, Easter and bunny because the last 2 are americanas and they lay colorful eggs. Well other then that that's all that has been going on around the McDaniel family's house.

1 comment:

  1. Wow Joy! I just saw your post on Facebook and it perked my interest as I have also had a challenge similar to this. I hope your son can continue to improve, and your sister can have the strength that she will need to get through this. Is this your full sister? Please remind me what her name is. Take care, my prayers go out to both of you!

    ReplyDelete