Friday, March 30, 2012

What's up the Kids?

Spring has Sprung ~ the beautiful weather, blooming trees, and green grass....Well the Allergies could go, but It's amazingly wonderful weather. We have already had to cut our green grass and our bushes are just spitting out leaves and blooms everyday. We are even getting ready to get the pool brought up for an early season. YAY!!

Ms "A" is having a month of Spring Overhaul....I guess you would say. She's been in and out of appts the last few weeks....she's even surpassed Lil Man with his appts lately.
One of her adult front teeth didn't form properly so we went in and had it rebuilt to look like her other teeth. I figured we spent all that time and money already to make are smile better with expanders/braces/retainers, we can go all the way and make it ALL look Great!
Here is Before ~
We have our Dental work done at Brown Family Dentistry in Neenah. They are wonderful!! Thanks Dr. Dawn for your artistic work.
It looks amazing! Other then her gums being alil upset the tooth looks like it's the real thing. Great Job Dr. Dawn and what a GREAT patient Avrianna is. She alot better then her mother, lol. After the tooth was redone it was back to the Orthodontist to get her retainer to fit properly again.
Avrianna also had her annual eye exam done. Unfortunately her eyes have gotten worse, by 2 steps, in the last 6 months. So it is a new prescription for her.....which then she just NEEDED to have new frames to boot.
Check out the bling!
I am taking Avrianna back to the Eye Dr today so she can be fitting for CRT contact lenses . Which is Cornea Refractive therapy ~ these are a hard lens contacts that she will wear each night, while she sleeps. As she is sleeping these lens will reform her cornea so that throughout the day she will see 20/20 without any glasses or contacts in. It's amazing! I hope this works for her as with all the water sports she does and her decline in vision she really needs correction all the time. She couldn't even see the BIG E without her glasses on. 6 months ago she could read with her glasses down to the 5th row, but this time is was only to the 3rd row. Guess she really couldn't see the board at school, sigh. The CRT lenses will be wonderful for her until her eyes have calmed down and then we could look at something more permanent, like Lasik. So for now these CRT lenses will do what Lasik does but without the permanency.
It's the week before Spring Break and Avrianna's school had Spirit Week.....She had a great time play the parts
Crazy Hair Day
100 yr old day

Color War ~ 4th grade was ................ RED
Jammie Day!!
Neenah Sports Day ... My lil Cheerleader!
I know I am partial but DANG is she just the cutest! She's growing up so fast and becoming a beautiful young lady.

Danny had another field trip to school on Thursday. I think I had more fun then he did as he really didn't have any interest in being there. He was a trooper though and stuck through it ~ LOL
The class was coloring Easter Eggs. Just look at that face ~ "Seriously Gail....Can we be done?""Alright let's go, now" ~ he was so serious the whole time :(

I am so excited with this years schooling. I will be definitely looking into seeing what we can do next year for Danny to increase his time. The therapist and teacher have done great things with him this last year. What a difference a new teacher and a year can make. YAY!!
I hope you ALL have a Wonderful, Safe, Happy Easter! We are looking forward to some down time around here. But don't worry we do have a few things planned for our Spring Break......We are going to head to the Shedd Aquarium in Chicago one day and then I'm going to take Avrianna up to a Water Park in Green Bay for the day and I volunteered to have Easter dinner at our house now. It will be nice to be able to sleep in for a few days. Just don't tell Danny or we all know he will throw a wrench in things......down time and Easter time just doesn't go hand n hand with my Lil Man. I can't tell ya how many Easters he's been very sick :(

Friday, March 16, 2012

Rocky Start

We've been on this new seizure med now for about a week. It has definitely shown improvement in Danny's seizure, NOW. In the beginning I wasn't too sure it was the right fix for him. Then on Tuesday morning he had a very long intense seizure and I was ready to throw in the towel, but after talking with Dr. Kasper we realized it wasn't the new med it was the titration off the old med that Danny was reacting to. His system has been on this older med FOREVER and is obviously dependent on it more then the neurologist's eagerness to get him off of it. So Danny's seizure on Tuesday was induced by withdrawal.....poor bug :( Dr Kasper set out a new titration plan and Danny has been doing well ever since. The quantity and severity of his seizures have lessened. Woohooo!! The significant side effect of Onfi is the increase of secretions. SO the suction machine is getting a work out. Then again I'm not totally sure I can blame all of the added secretions on Onfi as we've been having unseasonal like warm temps and the allergy levels are HIGH here. We all know how well Danny does with Allergies....NOT GOOD. Every year the allergies have admitted him in the hospital with some respiratory CRAP. Danny has always had heightened respiratory junk for allergies then he does during cold n flu season. With allergies knocking on our door AND Onfi.....hold on tight Danny here we go. While we were into see Dr. Kasper on Tuesday he took a look into Danny's left ear. It started bleeding last Saturday and it bleed for just about 2 days straight, pretty alarming to say the least. Well Dr K pulled out a clot that just tickled my tummy. I swear it looked like a leech......GROSS! I'm sure Danny can hear better with that thing out of there, but now the inside looks just painful and traumatized. So this afternoon we are heading down to CHOW for the ENT to take a look at it and give us some insight as to what to do to get his ear to recover. After years and years of issues with Danny's right ear now the left ear is wanting to play ~ poor bug that HAS to be very painful. It's going to take us twice a long to drive one way to get there then the time we are going to spend in the office with the ENT. At least the weather is nice out AND we enjoy talking with the ENT. Dr Martin to the rescue ~ lol.
Like I said the weather around here has been just BEAUTIFUL. It's great! The temps during the day have been in the 60's and 70's and the sun is out. Things are starting to turn green and I can see the sprouts of my flowers n plants popping out of the ground. YAY!!! The heater is off and the windows are open in the house, BREATHE!! We've decided to cancel out trip to Florida over spring break. With the weather here I see no need to drive 27 hours straight to go down south. There is more for us to do here then down there and there's not tiring drive to go along with it. We are planning on taking Avrianna (and possibly her cousin from Tomahawk might stay with us for the week) to a water park and maybe down to Chicago to the aquarium. Avrianna would be content to just stay home as we are going to be opening the pool early this year, due to the warm temps AND we put up her trampoline that she got for Christmas up in the yard. We don't see much of her at all......she LOVES that thing. It helps that for dive they also practice on the trampoline so this for her is a dream come true. I now have more leverage to get things done from her......or NO Trampoline/Dive. Avrianna just LOVES this sport~ she still talks about it alot to anyone that will listen and shows alot of enthusiasm.
I can't keep this girl on the grounded on her two feet she'd rather be flipping around
Have a safe and Happy St Patrick's Day from us to YOU! Take Care and thanks for stopping by.

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 :)

Thursday, March 1, 2012

Something's in the air..........

Welcome March.....we're just alil closer to spring ~ YAY! But we can complain about the weather too much around here as we've had record highs this winter and record lows of snow amount. The last big storm that was suppose to hit us was to drop about 6" of snow...well we got a thunderstorm that knocked out the power here at the house for about 2 hours. Boy am I grateful for the back up generator. Honestly we didn't even know the power had gone out till ALL of the house powered back up causing some things to make noises. None of Danny's machines skipped a beat or alarmed with the loss of power, FINALLY something worked like it was suppose too.

Danny has been off his game this last week. I started with him getting alil more junkier. The culture from his trache came back with another party of germs ~ staph, psuedomonas, and stenotrophomonas. All of which are not playing well with the same antibiotic. I believe because of the antibiotics he is having tummy issues. Poor bug is either down right pissy or sleeping the last 2 days, in addition to having multiple dirty diapers a day :( So I've been spending some extra cuddling time with him. He's either learning to get irritable and "mom will cuddle with me" or he's just that comfy when we cuddle that he can nap. Either way I win ~
As you can see I went out and get my hair cut off again. It was just getting to be difficult for me to do anything with it long. So off it went, thanks to my girlfriend Lynn. There was more hair on her floor then on my head when she was done :)Sassy ~
Sassy with Highlights! It's so much easier to care for when it's shorter. I like it !!
This week I go in for a MS work up. I am going down on Tuesday for my 2 hour infusion, then a 2 hour MRI of my brain/spinal, and after that I will be going over the results with my Neurologist. I can't believe she is going to be going over the results with me the SAME DAY!! How awesome is that. I've started to take some supplements that have been known the help with inflammation which is a big factor in MS. I really haven't seen a BIG difference yet, but I'm not going to give up on it yet. I'm feeling awkward things going on here an there IE: not being able to walk well, numbness in my arms/hands/fingers, weakness and fatigue, headaches, and vision issues. I'll be interested to see if I have more/new lesions. Seeing these lesions have their own personality and independence I've decided to give them a name ..... I have called them "Waegner's". For those of you who know me personally, you will know the importance of that name....a name that I think is appropriate to these lesions that have wreaked havoc on my life. Have I told you how much this disease SUCKS?! But I do have to say my mood/attitude has gotten better so that in itself it is an achievement. I started to take meds for it, but it's Baby steps! I will keep fighting for my independence and to keep MS at bay. Some days I think it would have been easier if they diagnosed me with cancer, not an INCURABLE DISEASE.


On a better note....The Clothes Hamper in Oshkosh, WI on Jackson St is now open for business. Come check it out!! We are open 365 days a year from 5am-10pm.