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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PT, Xrays, & Shopping ~ 3rd Post of Day

What a day Danny had. Here's Mr Dan (PT) and Danny. Notice anything......Danny is holding his head up all by himself and sitting with a smile on his face, no tears, YIPPEE! He did so well with Mr Dan today as he was alert, smiling, and vocalizing the whole time. Sorry Ms Kristi, LOL. Mr Dan is impressed with the how well Danny can bend is leg this week. He said Danny has gained about 30 degrees of range in his right leg, Way to go MOM, I guess I am stretching him right. :0) We did find out that his right leg continues to be shorter then the left by about 1.5". Mr Dan even said we can try to put Danny up in the stander next week, OMG ~ I didn't think he'd use that till this spring or even summer. I am so excited that he is going to be up once again. I hope it's not painful, cross your fingers!

Awe, Isn't this sweet. Danny's holding his own hands....He's NEVER done that before

Here Danny is talking to Mr Dan at the end of therapyI took some pictures of his xrays so you all could SEE what I'm talking about. Here's my lil man. These pictures show the scoliosis of his back, the ITB pump & Catheter, and his new leg hardware. They took the xray with the brace on so the dots and buckle are from the brace THAT is NOT internal. His scoliosis bend is about 50 degrees to the right and the kypho bend (which means the spine bends forward) we did get a new angle of so we'll have to get that this spring.I changed the contrast to black on white....kinda coolThis picture shows the catheter really well and how it attaches to the pump then coils internally around and runs up his spine. The catheter was suppose to be in the base of his neck but it wasn't properly anchored and it has now migrated to his mid back, argh.These show his hip IN THE SOCKET when his legs are frogged and straight, YEAH!!! The plate on his leg is holding the leg together where they cut it...then the piece they cut was graphed up in his hip socket to make is bigger(up by the puck). I like these ones cuz you can really see the computer stuff inside the puck...modern technology, it's amazing!After therapy I took Danny out shopping with me. We went to go look at Stain glass that I am ordering for the new house. Danny loved being in that store....all the colors. Plus they had this Yellow parrot that kept squawking and Danny seems to love it. After that we went to visit his Nanny at her work. So he got ALOT of attention by all the women there...yeap he sucked it in. I had some stuff to drop off at GW (Goodwill) cuz this morning I cleaned out my closet and I FINALLY got rid of all those bigger clothes. Then we went shopping at Walmart to get some odd n ends, Birthday presents for my Niece and Mom, and Superbowl yummies. Danny sat in his chair like this for just over 3 hours and was in a great mood. He hasn't sat up in this position for that long EVER. YEA! He is usually very reclined. Things are working in the right direction!!!! Well time for night meds and then Danny and I have a date snuggling watching a movie.... Titanic! Thanks for following our story. Stay warm! Tomorrow is suppose to be a heat wave with mid 20's, but it's suppose to snow rain...will this weather ever get better. Please sign out guestbook or make a comment to let us know you stopped by.

Great Day

My lil Eskimo!!

What a day yesterday was!! Danny was AWESOME in therapy....he surprised Ms Maria and Mr Scott with all that he could do. YAY!! Even with being laid up in bed for the last few weeks and in pain he was ON HIS GAME. Danny activated his toy, had purposeful movement, and even had the appropriate facial expressions during a conversation. We were talking about something funny and all of a sudden Danny got this smile on his face....let me tell you it would melt ice, LOL. Ms Maria has some new ideas that she would like to try with lil man in regards to purposeful movement which would prepare him for a possible communication device down the road...OMG! Can you say AWESOME!! All the things I was told he would NEVER due communicate was the biggest blow to me....to NEVER hear MOM or I LOVE YOU I still have a hard time with this, but to know that maybe someday HE will tell me what he wants (maybe not in the English version but .......HELL who cares, if he can express to me in anyway what he wants that will MAKE MY DAY!!!) It's amazing how priorities change and how you look at things differently now. All I want is for my son to be "normal"....fight with his sister, run around with friends, sas back, and eat junk food. So much people take for granted!!!!!

Avrianna had a blast in Theatre class and she even lucked out not going to get labs....So a good day! She wasn't so lucky today for labs but now they are done and I can only hope no more in the near future. She was so brave until we got into the lab room and then.....well it could have been worse, LOL. She got a cool band aid and some stickers and then we were off to the library & dilly bars to "make it better". Again amazing what you take for granted....Avrianna is six and has been in for lab work so many times I can't even count. I would give anything to take those memories away for her, sigh!

While Avrianna was at Theatre class I went to GW (my cool way of saying Goodwill,LOL). I know I've been loosing some inches as my pants have been getting baggier, but I didn't know I lost that many, YAY!! So in your face Wii Fit, heehee. I can't believe it....I bought size pants that I haven't been in since High School. WOOHOO!! I'm still not at the weight I'd like to be at, but the size I am....isn't that weird, but I'm sure carrying my 55lbs son around is helping with muscle weight, argh!!! I've always been "Big boned" so I'm happy with where I am despite what Wii fit says. So again a good day....I was doing the happy dance in the dressing room and then had to show off my new buys to Dan (which I NEVER do!) LOL. I was so happy with myself....to have lost over 100lbs and get back to may HS size pants, ROCK ON!

Avrianna and I went out the house site today and they roof is starting go on, WOW. Here are some pics of lil mans room getting the roof put on!

Take care! Check out our post of our current house that is for sale = link is on the left in Our Stories. We would love it if you signed our guestbook or post a comment to let us know you stopped by...thanks for following our journeys!

How Appropriate!

Now if he could talk............ what do you think?? This is NOT the life I ordered would be appropriate......I think!! :)

My mom came over today for a couple hours and watched the kids for an hour while I ran to Walmart....that place was NUTS! I can't believe all the people. I needed to get some odds and ends so I was out of there in no time but some of those people you could tell had ALOT to do. YIKES!!! Thanks Nanny for the hour break .... even though it was for grocery shopping it was nice to get out for just a few.

Let it snow once again....it is really pretty out, but this snow thing is getting old. I'm not a snow or cold lover if you haven't figured it out. LOL! I can't believe how much it has snowed this season already. Tomorrow is the first official day of winter so I can only imagine how much more we are in store for, sigh.