Craziness

Monday was Danny's last PT session for his summer session...I know summer just started, right? Well because MA has been a pain in my back side in approving the sessions they can not see him till they get word it's ok from MA. Mind you I started this process back in MAY, thinking I wouldn't run into this problem. So needless to say I'm NOT a happy Momma! The system just sucks!! I can only hope they get their CRAP together and GET IT DONE so my lil guy can get his PT. I am highly considering looking into private therapies in the home so I'm going to do my homework and start investigating what's all out there.
Monday my in laws came down Papa n Nana to hang out with us. They got a tour of the Laundry Mat and the new house and then they came over to have dinner (take out Chinese, yum) and a slumber party. I stayed up way past my bed time chit chatting girl talk with Claudia, it was GREAT! Then yesterday the kids and I kidnapped Claudia, we met up with my Mom and Aunt Bonnie, and we SHOPPED till we dropped. I went and got my hair cut to start off the morning and then we were off. We all had a great time and the bargains ~ The full size van was FULL! 8 FULL hours of shopping ~ we had spent so much time out that they needed to stay one more night, heehee. They were up and off heading back up North early this morning. THANKS Papa n Nana we LOVED having you guys over ~ WE MUST do that more often. MISS YOU ALREADY
While we were shopping lil Ms Avrianna started to get a soar throat and lil man just wasn't his self (crying and didn't seem comfortable at times). This morning Avrianna still had a soar throat, I checked it out the it was very RED. So I called Dr Kasper's office to have her looked at today. I was able to make an appt in the morning so it was alil crazy around here trying to get us all ready and showered before we went in. As I was giving lil man a shower he was still "off" and then all of a sudden ~ SEIZURE! God I hate them even more when he's wet...timing is so bad :( He came out of it after 7 minutes but I called back to Dr Kasper's office to see if he could see Danny too just in case these two are SHARING something. Avrianna does indeed have a soar red throat with a low grade fever but no strep. Whew! I need to watch her to make sure she doesn't spike a fever or go yellow (jaundice) as with her not having a spleen things could turn south VERY quickly. The verdict with Danny is ...... he's just Danny. LOL! Ok, I'll explain that one......We are changing his seizure meds around and seeing there is no physical reasons for Danny to have crying bouts or prompt a seizure. That we are thinking it's the change in meds. Danny doesn't do well with change, he tends to make a mountain out of a mole hill. With changing the meds he could be "confused" or feeling different and that's the only way he knows how to voice his differences. Again this is NOT a definite but that's the theory we're going with on him right now. Got to love the seek n find game with a non verbal child....you KNOW something is wrong now figure it out, sigh. While Dr Kasper was checking out his ears he was pulling out some wax that was in the way to seeing the ear drum.......the wax ended up being the ear tube. So now no tube in the left ear.....got to see my first tube, LOL. Dr Kasper went over some of the images with me on Danny's brain MRI.....WOW ~ Danny you ROCK and my HERO!
Bailey (our family dog) had to go into the vet today too....I know, right? She had to have her bi annual labs done to check out the level of Lyme's disease in her system, we should have the results back in about 2 weeks.. Yeap she's got Lyme's and Allergies.....laugh with me NOT at me, LOL. While we were there we got her nails trimmed, she's so NOT a fan of that.
This morning I got a phone call from NeuroScience and the Nurse Practitioner that was to see me on the 22nd isn't available on that day any more....WHAT? So we had to bump my appt back even more to continue the diagnosis of what's up with me. *SIGH* A part of me is ok with that and then there is a part of me that is........I have soars and masses in my brain and cervical spine how long should I be putting this off? The diagnosis process is so much different when it comes to me then with the kids. I can always go into ER if I should have a change in my symptoms or if I get new ones (like I know what that would be when I don't even know what the heck I have). Funny how they will see you RIGHT AWAY when you are having a stroke or something but trying to pinpoint what, when, or how they will put it off for months. The system SUCKS!
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With some help from Ms Aaryn and leg immobilizers Danny was standing up today. Now with him not being in the stander to give him the height I was able to SEE how tall my LIL man is. Avrianna is just about a hold head taller then Danny. She's my sprout!!Yay ~ Good Job standing Danny!Checking out the view from the 6th floor ~ Doesn't he look GREAT. Yeap ~ Avrianna has to be around to help him out ALWAYS, he's stuck with her FOREVER, LOL

Love his eyes......seriously Mom you're NOT going to help me out here?

Dr Kasper called this morning and as we wean Danny off of Topamax for his seizure we are going to add back Tripletal. Danny was on this med once before, but he has issues with maintaining his sodium levels on it. But I would rather have to add sodium to his diet then have to deal with stones on an on going basis. It's the lesser of two evils :( The doctors feel that Danny won't do well just dropping one of the seizure meds so we have to replace it maintaining his seizure meds to 3 meds, UGH! We'll have to go in more for labs to watch his sodium levels, but I'd rather do that then surgery from painful kidney stones all the time.

Dan's Dad, Papa and Claudia are due to be here soon. Avrianna is so excited she is going to be able to hang out with them for a few days. I'm sure we'll have to get some shopping done while they are here as it's still raining a cold here, what better to do then.....SHOP.

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Visits

Friday afternoon Papa and Claudia came over to do our celebrating for the holidays. When they first arrived Danny was doing PT so I kicked them out as lil man was paying more attention to the chit chat in the other room then with Mr Dan. Of course Danny then fell asleep either to the doctor outings we were at Friday morning or cuz he was mad I sent them away and he couldn't go along....needless to say no PT was done. Here are some pictures of our great time together. My grandparents came over for dinner too.....I cheated and ordered Chinese but it was GREAT.

Can you say Monkey see Monkey do....that's what I think when I see this picture of these two, heehee. This is Dan and his Dad Dan aka Papa......I will post again with a "Dan Legacy" soon.

Here is our newest addition to the family....Elizabeth, Avrianna's American Girl Doll that she got from Papa & Claudia
How Sweet!
Oh MY....they aren't related are they, Their resemblances are stunning!
The KINGS of BS right here in my living room.....and boy was it flying, LOL. It was such a blast listening to their stories.

The coolest firetruck ~ that Danny got from Papa & Claudia.....this thing does everything...moves every which way, the ladder moves up/down and even spins around, and it has a siren. Everyone enjoyed playing with it. Danny got another firetruck that I can adapt to work with his switch, YAY! This one is just for "SHOW"

Then today Uncle Tim and Amanda came over and we had a WONDERFUL visit. It was so nice to see them again. I realized that they really are not that far away...only about 1.5hr away so once Danny is out of his brace I think we're going to road trip and visit them. It's always a really nice time when we get together with them. We MISS you guys.....thanks for all the goodies. Avrianna is already excited about her week to pick out a dinner (our new twist to dinner...we rotate weeks and once a week someone needs to pick out something new out of a cookbook) as she got two great kids cookbooks from them. They brought wonderful Christmas present for the kids and even a bottle of wine with a dip for us. Uncle Tim and Amanda had their first experience with Wii today as they played bowling with Avrianna. Don't worry guys I won't use them at the wedding....just going to post a few good ones on here, LOL. Thanks again for the great visit we definitely need to get together more often.Yeap his 6 year old God Child beat him at bowling ~ Go Avrianna!!Best Friends FOREVER!!

I hope everyone that is staying warm....we are expected to get highs in the negative teens this week around here....This is just CRAZY!! Take care and please post in our comments or guestbook to let us know you stopped by.