tests and other junk...

I feel so slack, the last week, I have hardly posted at all! It has been more than chaotic around here! I barely remember having Christmas! There has been so much mayhem and unrest around here, I feel like I am barely hanging on. It has been so sad to see my step dad dealing with all the loss and destruction and then Christmas and all on top! It just breaks your heart.
On top of all that we have been trying to get some answers with Faith's seizures. She had her MRI on Fri the 18th and per the Neurologist, her tumor seems about the same- no significant changes. Today, she had her EEG. It was a sleep deprived one, so we all only got about 5 hrs of sleep, then therapy, then an hour + drive to the EEG, then home. We were gone for 11 hours, today! We were able to meet with the doctor, after her test, to hear what they found. Of course, we knew that it would be abnormal- always have been.
But he did say no significant changes, which is good. He did tell us some different things that we haven't heard before. He said that there were a lot of misfiring going on in the back of both sides of her brain and that there was a lot of increased misfiring when she was drowsy- going to or just waking from sleep. I don't know why I hadn't really considered it before but it makes sense, since most of her seizures occur in the very early morning hours- around 3-7 am. He had said, last week, that some children have increased seizures as their brain matures, as they age. So I asked if they better when they get older. Of course, I didn't get a straight answer. Just generalizations, some do some don't. He said that, as we knew, that children who are compromised, neurologically and have a lot of abnormalities are just prone to these problems. That there is no medicine that is 100% that nothing will fix what is happening in her brain. Of course, we knew all of this, already. It's just frustrating.... We just know so little about the brain and especially hers and what exactly is going on and what exactly did happen and why. I just live with so much anxiety about the seizures. I always feel like I am on high alert! I don't know how I am supposed to live like this. I have read a lot about seizures and done a good bit of research but it doesn't really make me feel better. And our conversation with good ole' Neurologist of the year, didn't do much in that department...We did go up on her Tegretol levels, even though we are still waiting for her last blood level check. My feeling is that, before long she is going to max out her levels and we will be forced to delve into other medications.

HELP...I need somebody....HELP!

The past 2 days have been very rocky, in the Hudson house. Yesterday was my birthday...YES...the big 3-2! I know, I know! Carl had asked off that day b/c we had the neuro appointment. Well, first of all we had a very busy day and had plans to get up and leave the house by 7:30 am. We woke at 7:45am, overslept that's to HUBBY! Then amidst out rush to get out the door, Faith had another seizure. Her second in the last week. Now these really worry me b/c of her tumor. We have been trying to space out the MRI's but we just can't seem to do it. Anyway, I had my list all ready to grill the neurologist but when he came in the room, I just fell apart. I cried like a baby....about everything. I knew I was falling down that crying hole when we were waiting in the room, I could feel it coming, but I tried to hold it in. TRIED, being the operative word. So I looked like a basket case and everything pretty much went out the window from there. I told him I was so worn out from worrying about her seizures and he said...."Well, isn't that what we do as parents..Worry about our kids?" YES, folks, he actually said that to me! So nothing went like I was hoping. He agreed to a repeat EEG, MRI and Tegretol levels, though. He also said "Well, her seizures have never been under good control." So don't you think this should be a priority? They have continued to get worse and it is interrupting our lives! So, they scheduled the EEG for next Monday the 28th and promised to call with an MRI appt. We got the call about 3 pm with an appt for today! The same day as our big Shriner's appt! We couldn't say no b/c they had pulled strings to get us in (despite me telling them I COULD NOT do Friday!) So we had to go in to Shriner's early. We got the casts off for good! WONDERFUL! Her feet look great...NO inpatient rehab...FANTASTIC! The only down side is she has to wear her splints every night for 6 months! We were hoping for 3 or 4 but I guess we can live with it. Then off to the MRI, which was another Battle Royale! Confusion about appt. and feeding. Which set me off seriously! I told the nurse I was talking to "don't speak to me like I am a moron!" Carl almost fell on the floor laughing at me! I was so upset, but we did get things worked out and the MRI. So now we wait...maybe a week maybe just a few days. I don't know yet. Hopefully we will not get any bad news before Christmas. I am holding out for that. I had leftover pizza and chicken noodle soup for my birthday dinner. LOL! That's all I can do. Nothing has been going right lately. I have been trying to get this present ready that no matter how hard I try or how many trips I make something goes wrong! ARGGGG. I need some positive thoughts!!!