Friday, March 9, 2012

How wonderful

I do have to say the new store in Oshkosh has been surprisingly booming with business. The first few days of being open (without any advertisement) and the place is just hoping with people. It's very exciting to see. Let's see how it does now that our ad is in the local paper. It looks as if we found a perfect location for our second store. How wonderful!

I went down to Milwaukee this week for my annual tune-up. My mom went with me for the day as I new it was going to be a long day and I didn't know how I was going to fair with the drive home. Other then being a LONG day and having a severe case of flatassatosis I had a good day. It was nice that my mom came with so she could see what goes on and she was able to ask questions that she had to my neurologist. I also enjoy having someone along with so I'm not talking to myself, lol. My infusion went well and then I was off to get a MRI of my head n C spine. That took alil over an hour....I actually dosed off in the tube :) Then it was off to go over the MRI result with the Doctor. I still can't believe I was able to talk about the MRI about an hour after I had it done. That's just unheard of with my older doctors.....I sat and waited FOREVER. Good news is ~ all my "Waegner's" are stable. They are not "Active" at the moment and they have NOT invited any new friends to come and join them. I have about 7 of them in my brain and the count in my C spine is up for debate, I believe there are only 3 there. So it looks as if this new med I've been on for the last year is working. I am not relapsing right now ~ How wonderful!

Danny went to see his Neurologist this week too. It's Neurologist week around here. Which I don't mind as both of our neurologist are AMAZING doctors. They both think outside the box when it's needed and they treat the person not just our diseases/disorders. They both listen and they both have a personality. We are truly blessed to be in the care of these doctors....I don't know where we'd be without them.
Danny's appt started off with getting his ITB pump refill and then we chatted with the doctor after that. Danny needs to have his pump replaced in the next year as his battery life is almost out. So I will be trying to coordinating that surgery for this year :( I am going to try to coordinate it with his rode lengthening in October, but it will all depend on if the surgeons feel it's safe to due both at the same time. Then we were off to the BIG Question as to what to do with these increasing "episodes" that have wrecked havoc once again with Danny. Fortunately Danny was having an off morning the day in the office and Dr Edgar was able to see first hand what is going on with these episodes. It's bitter sweet, as a mom you hate to watch your child go thru these but as a mom trying to figure out what's going on it was great he did them in front of the doctor. As we talked more in depth about them and what's going on, Dr Edgar now feels strongly that these are indeed Seizures, even though the EEG'S don't show them as a seizure. Danny's EEG is crazy active constantly with spikes, but they have never broke out into a seizure, on the outer surface so the EEG can pick them up . Seeing that these happen while he's sleeping and will wake him up, and now the Dr has seen how and what all goes on during these all points to seizures. Hmmmm, I could have sworn I've been saying that for the last couple years. These seizures are coming from deep inside his brain where the EEG can't pick them up, just all the activity on the outside areas that is going on. Makes sense to where most of his brain damage is located. There is a test that can be done to verify seizure activity, that involves drilling a hold into his skull and putting probes internally on the brain so they can read whats going on throughout the whole thing, but we are NOT going to do that. They are seizures and we are going to treat them as such. Danny started a new seizure med, just last night, but it will take awhile to get up to the proper dosage while weening him off one of his other seizure med. The process should take about a month to get to where Danny needs to be and then we'll go back to see Dr Edgar again to discuss how it's working. Cross your fingers! This med Onfi, even though it brand new on the market, is the "best" option right now for Danny as the other 2 we were told about has significant side effects that are not options I need Danny to endure. How wonderful :(

Last weekend Avrianna had 4 days off due to conferences. She is doing GREAT in school! I'm so proud of her and her accomplishments. She alil chatty at school, I'm not sure where she gets that from ~ lol, but she remains all A's and 2 B+'s. Way to go Avrianna!! We went out to the ice arena with a girl friend of hers on Sunday to get out of the house and have some fun. Unfortunately about 20 minutes into the "fun" A's friend fell on the ice knocking herself out and cutting her face. I knew immediately she needed to go in for stitches so off to the ER we went. Making that phone call to another parent that they need to meet us in the ER there's been an accident really SUCKS. Once there they realized that there was more issues then just stitches as she started to get sick and she got confused. After 2 CT scans and xrays she was cleared of any brain bleed or broken bones, but she did have a bad concussion. Poor thing :( Of course this would have to happen on my watch, I felt horrible for her. She had to miss a whole week of school, no gym for her now for the rest of the week, and not to mention she now is sporting a pretty large shiner with stitches by her eye. She's been a trooper with all of this, I'm really glad to she doing better .... she had me scared the first night in the hospital. Avrianna feels awful for her friend so we went out and got her some flowers, toys, and her favorite Chocolate in hopes to cheer her up. We've visited just about everyday to bring her get well cards and to let her know we are thinking of her. This weekend we are having her over to watch some movies and play some board games. Very low key for her for awhile ~ How wonderful :(
6 days after fall
Avrianna got her braces off this week too. She was SO EXCITED to finally get them off. Phase 1 was a longer process then we had anticipated but now it's done and we await the process of Phase 2 which should start in about 2 years. UGH! She now has to wear a retainer and to hold all the correction in place. Boy did the retainers change ... she picked out the colors and it's lime green n blue that glows is in the dark and has dog paw prints all over it. Who needs a nite lite when your mouth glows, lol. How Wonderful!
Here is the mold from day one before her correction to what her teeth and bite look like now. Nice to SEE an improvement ~ WOW
Definitely Avrianna style!!
Thanks for checking up on us. Never a dull moment over here :)

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