Thursday, January 26, 2012

This isn't suppose to happen.................

This a "normal" comment I get, directed towards Danny's medical status. So when the ENT stated this yesterday about Danny's ears I just had to chuckle as I've heard this more times I care to comment on. Gail n I both looked at each other and shook our heads. Does it surprise me .....NO. It does make our journey more complicated....YES, like we need more complications. Our journey is FULL of bends, twists, and pot holes. It's kinda funny when the Dr's get that ah ha light bulb moment.....Danny IS an enigma. I know Dr Martin is working very diligently to help me get Danny's ears healthy, but I also know how frustrating it is for him to keep running in to road blocks continually. Here is what I know...his ears are bad :(. The right ear looks awful full of white n yellow cheesy/pussy goo, bleeding, and the tube is out. The ENT cleaned out as much of the goo in the right side as he could, and it will be sent down to be cultured. Hearing the suction machine suck all that out of his ears is just WRONG, YUCK. While the ENT was cleaning out the right side he was able to go in a retrieve the tube that has fallen out. This got Dr Martin on the not so nice list really quick. The left ear, even though it doesn't "look" as bad as the right has got it's own alarming issues. For whatever reason the left side had bled at one time and left a bloody film over the opening which is clogging the tube now. The tube isn't positioned correctly either so the drainage doesn't have a chance to come out which leaves it all sitting behind the ear drum. I'm almost positive we'll be heading back down to CHOW to have the left tube removed, but we are sitting tight till we get the culture results from the right ear. What is determined to help the right ear will also aid in what we will do with the left. SIGH!! I HOPE we can get a "fix" for Danny's chronic ear problems. That HAS to be breaks my heart. It doesn't help he has had issues with his ears before the trache and vent as they only aid in ear problems. I'm hoping we get at least a preliminary report before the weekend so I can treat whatever it is that's having a party in his ears.
While we were in CHOW I was able to sneak Danny into see the dentist and get his teeth cleaned. I've been pretty lucky at getting Danny in on same day appts, yay! Danny has been lacking on the dentist visits, I think he has the same anxiety as I do with the dentist, because every appt we had this last year I've had to cancel due to illness or surgeries. His normal dentist has left since the last time we were there so he was seen by a different one. I LOVED her!! She was fantastic with Danny (and Mom). Of course when the appt was over she informed us that she too will be possibly leaving to a different establishment. Grrrrr ~ why do all the good ones leave. I think CHOW needs to invest in more of the ones that are leaving in hopes they stay. So it looks as he'll be getting a new dentist yet again. I'm always on guard when it comes to coming into an appt with a Dr I don't know. I can only hope that the rest of the dental staff is as great as the last two even had.
After we he was done in CHOW we just HAD to go to The Cheesecake Factory for some great food. I left there Fat n Sassy, lol. It's always a wonderful treat to be able to go there. It's even better to be able to go with great friends :)
Once we were home there was no rest for the weary because PT was already there waiting for Danny to come home. Danny was casted for new AFO's. He's been long over due..his last pair were made 7-08. Funny thing is, other then his big toe sticking out the front the rest of the AFO is too BIG for him. I guess in '08 he had beefier legs, feet, n ankles then he has now...he's more slim in trim these days. I can't wait to see what they turn out to look like as Avrianna picked out all of the patterns :) His sister will make sure he is "IN" with the style now.
Ms. Bailey is having a rough time lately. She's been throwing up more n more. I had her to the vet to run a bunch of tests n xrays. Everything panned out ok, but the vet is thinking a possible tummy ulcer. We started treating her for that but since then she's gotten tomorrow we are going back to vet .... maybe he'll "find" something else. I feel bad as I know she's already lost 4 lbs, she's loosing her beautiful coat, and she's getting sick all the time. She's 11.5 yrs old so I know she's getting up there in age which doesn't help either.
I've been busy planning a few parties/get togethers for the next few months. I thoroughly enjoy planning events. We'll just see how they all turn out. Wish me luck!! This next month I have an appt with my Neurologist for my year follow up. I can't wait to see her and talk to her about my MS treatment. I know I will be needing a MRI to catch up on how things have "progressed". I'm alil nervous about talking about my treatment plan as I will have been on the Tysabri for a year now. A wonderful year at that, BUT the chances of me getting the brain infection after being on Tysabri over a year is greater, sigh! What to do, what to do.
I will keep you posted!

Monday, January 23, 2012

Diving Wonder

Avrianna has taken to Diving VERY WELL! It's like she's been doing it for years. Even the coach has commented on well she is at diving!
Here are some pictures I took on her 1st and 2nd practice.....YES that's right the first time!! AMAZING, I tell ya...AMAZING!

Here are some videos of Avrianna diving!

Have I told you how proud of her I am ~ She ROCKS!!
Sorry but I just had to gloat!! LOVE HER!!

Sunday, January 15, 2012

This house is going CRAZY!

Not only does craziness run rampid through our house ~ I swear I'm going to make a Welcome sign "Welcome to the Funny Farm". Danny has found a favorite book to read on the computer that has a vibrant loud males voice that says "this house is going CRAZY"! It's so great to see him engaged in a book and having fun. We are finding his head to still be the best location to put a switch for him to activate. He gets so excited to hear this book, that he knows what pages have this phase and will skip pages until he hears it. LOVE HIM!!It's well into January and we've finally got hit with winter weather n temps. It's been pretty calm around here for January. Jan 12 and we were wearing sweatshirts outside the weather was almost 50 and no snow on the groundThe next day snow snow snow. Winter is here and the temps are dropping :( Can't say I'm happy about it, but we do live in Wisconsin so I can't really piss n moan too much.
This white car, the driver unknown to me, decided to drive up my driveway and attempt the the round about. They went wide and found themselves stuck in my yard....literally as went so wide they were in the grass. LMOA!! I went out to ask them what the H*!! they were doing on my property but they were able to get the car free and drive away. Morons!! My drive doesn't look like a street so NO Trespassing.
We went into see Dr Kasper on Friday and he made Danny a smaller lightweight splint. We still have no concrete theory of why he continues to have pain in his leg. 1~ hair line fracture 2~ pulled tendon or muscle 3~ knee cap not running on right track. All of which needs "rest" to help recover. The first splint was too heavy n big so I'm hoping this one will help him better. We've increased his clonezapam which should calm his tone down more too.
Danny is still having issues with his ears. His right ear is just chronically yucky but now his left ear has decided to play with in game. Grrrr! Other then the daily pain and the ears Danny is doing pretty good.
Gail helped me organized Lil Man's closet once again. It was getting alil outta control.
Now it's all good :) and even labeled :)Our newest nurse Keren, who started in October. She's become a wonderful addition to our Family. She's been an enthusiastic breath of fresh air. I wasn't sure how Danny would tolerate all the enthusiasm she has, but it's been a wonderful thing. She is constantly doing stuff with him from books, to toys, to massages, she never give him a break. And I LOVE it!! He looks forward to her and Danny is so alert and vocal for her. I've seen him light up around her....I can see positive things between these two. What a great team of nurses Danny has, we are so blessed.
I was at school this last week to pick up Avrianna for an Orthodontist appt and happened to see this on the wall. I can so see her as a Nurse or some part of the Medical field...she's getting into all of that kind of stuff now. Too Cute!!Avrianna is ending her 1st phase of the Orthodontist. She was alil disappointed that she has to have one more month with the braces on, but she knows it's almost over with. Then onto an upper retainer. She will be having phase 2 done on the lower level but she'll have to wait a little longer before we start that.
Here's my AWESOME swimmer with her BIGGEST fan ~ at the Wausau swim meet last weekend. She did FANTASTIC improving on her times and her stroke etiquette is impressive.
Some of our silly swimmers :) What a great group of kids!!
She understands that ALL her practicing through the week has helped with her meet results, but with that being said she's reaching her limit. It's been a LONG season and she's worked very hard but I think she's burning out. She LOVES to swim!! So to keep the "spark" we are starting to dwindle down and give her some down time. It's been becoming a constant quarrel to get her to go to practice as when there, it's swim up n down in the pool for 1.25 hours straight. She does great but it needs to be "fun" too for a 9 year old and really it's not "fun" it's hard work. She's going to try something different the next couple months ~ to join a Diving team. We'll see how that pans out.
My treat to myself!! My first pair of Dansko's ~ I love them. The way they look, feel, and the statements. Gives me a lil pick me up :) This is their 20th anniversary edition and I fell in LOVE with them. Thanks to Keren for sparking my interest in these :)
It's been a crazy few weeks for me too. This last Monday I was able to go out with some of my support group moms for a few drinks before our meeting. I haven't been able to attend the meeting for a VERY long time. It was GREAT seeing them and be able to just ......... get out to unwind.
I'm starting to get why people just SNAP. I'm not sure how much more I can take on, the kids are enough to keep me busy and on my toes, but now I get more. This last month I've found out that in addition to my MS and crappy working thyroid I now have two nodules one on each side floating around in my thyroid. Right now they are just going to "watch" them too see how aggressive they grow. I also had my annual mammogram this week too and NOT to my surprise there was a new mass growing in the right side. Of course it has to be on the right side...the side with the Med port up in my chest, which makes the squishing alil more tricky. I had to go back the next day for more pictures and thankfully what was seen the day before was no longer there on the extra in other words they squished the girls so hard, the day before, it popped ~ lol. Another year until I have to deal with that again :)
One day at a time...right?!? I'm just hoping we can catch our break SOON. This house is going CRAZY!
Thanks for stopping by and checking in on us.

Danny's School Day

Jan 5th Danny went on a "Field trip" to his School, Coolidge Elementary...for the first time :)
Danny even got to see the Principle :) ~ It's was so nice so got to see him. We talk about him to her at the IEP's but she's never met him. Leave it to my kid to go to the Principle's office on the first day, LOL.
Danny with his Teacher's ~ Mrs. Bowers on the left, his CDL teacher who comes out the house to work with him and Mrs Weyenberg the 2nd grade teacher.
No play time for Danny.....they worked him hard. Here he is in the computer lab. Where PT ~Ms Nicole and ST ~ Ms Cathy joined with us
Danny checking out the smart board in his classroom. While he was introduced to his classmates. There are 6 other students in his room.
Even PT ~ Ms Karen came by to see Danny shine in school. She helped him do a project.
TOO Cute ~
The reaction I got after I asked Danny if he liked going to school :)
Visiting the school was great! I really enjoyed seeing Danny's reaction to the unusual surroundings. I really do think he had a good time :) I am so glad we went. It also confirmed that (even if he could) the school setting wouldn't be the right one for him. Not that they aren't doing a great job there, I just don't see Danny thriving there. He can absorb/learn so much more in his one on one that he gets here ALL DAY at home.

Wednesday, January 4, 2012

Sit down ~ hold on tight 2012

My Lil reindeer :0) ~ they are too cute!
We managed to stay at out of the hospital over the Holidays so we hunkered down at home and enjoyed playing with our new toys. It was SO nice!!

Don't let these faces fool you..............
they are NOT as sweet n innocent as they may look. Just ask the carpet guy who had to return to the house twice the last month, grrrrrrrr! Worst part about it as I can't tell you which one is guilty :(
Danny is ringing in the new year of 2012 in true Danny form ~ sigh. It's only the 4th and he's already thrown an ear infection, GI issues, irritability, crying and just today ........
possible bone fracture in his femur ~ Which could be the source of his irritability and crying lately.
Today we went down to CHOW for an eye appt for Danny and then I was to be off to my MS infusion. I was able to sneak Danny in for xrays of his right leg, which has been giving him discomfort, so thankfully Ortho was able to get him in for a picture. I was also able to have ENT check out his right ear as the tube in there has slipped out of position and has been draining funky goo. Once we were finished I got a phone call from the Ortho dept asking if we could bring him back for more xrays. Well that can't be good :( They really thought he had fractures in his femur bone so they wanted a closer look........ there are suspicious marks but nothing the really jumped out at them with the closer views. So the next step is some labs, a bone scan, and possible MRI.
Those fine white lines above the knuckle/growth plate could be fractures or just marks from a "traumatic" episode that has happened in Danny's life. Kinda like a tree with it's rings.
His knee is swollen and soar which the Dr was able to actually see so it was advised that Danny wear this splint for support until we figure out what's really wrong. It looks so comfortable ... doesn't it ~ NOT!!
Another PERFECT shirt ~ Gotta LOVE his attitude......I'm not sure where he gets that from, LOL
What a day today was! Tomorrow I should have a better idea when the other testing will be able to to be done. So we wait ~ Impatiently! Bring it on 2012 ~ I'm READY!

To end on a good note:
Here's a video of Danny chattering away. He's been vocalizing more the last few days which has been music to my ears. The last few months he's really lost the drive to talk, so to hear him once again just warms my heart. Boy have I missed his voice :)