My New DreaMS: Fourth Festivities

Well we never were able to pinpoint Danny's new tricks of very low heart rates and temps, but he has been behaving himself for awhile and back to the same ole Danny ways. He unfortunately has a nasty ear infection right now that is giving him grief.
We went to see the Cardiologist about what has been going on and to have an echo done on Danny.
I thought this shirt would work great for a Cardo appt :) LOL

We did find out that his heart is functioning less then it should be, but not by too much. The Dr really didn't find any answers as to why Danny was doing what he was doing or why his heart has a decline in function. Her theory was..........are you sitting down.........she believes he is...........

Anorexic

Um, excuse me? Danny is followed closely by GI, Dietary, and his Ped. I feel him ALL his food everyday and his labs have always come out "normal". He has lost some weight though. I was alil put off with the comment, but she stated it wasn't what we weren't doing...it was that he may need some more calories seeing he's older.
Well we hadn't had any other leads so we upped his formula and so far so good. He hasn't dropped his heart rate and temp lower then his normal low. Maybe this Dr is onto something here. She did say that if his "episodes" were due to Anorexia his heart could take months to fully function properly again. I guess it's one of the last things that regulates back to normal. So we'll see here again soon and redo all of the tests to see if there is any improvement.
We see Danny's Neuro on Monday and I'm going to run all the latest Danny tricks by him and see if he has any words of wisdom. He usually does :) We've ran drug levels to see if they were the culprit, but those too all came back good.
Oh Danny do you always have to be so difficult?!?!
We have three new nurses working with us ~ Ms Kelli, Ms Cori, and Ms Sue. They are all very nice and have been working out well. I say they are a work in progress and they are all progressing nicely. Of course there are a few hiccups here n there, but we are working out all the kinks. I'm sure that we'll have them Danny pros in no time. Danny seems to be adjusting to the change now. I think he enjoys having a new nurse everyday. It's like a box of chocolates....he never knows what he's going to get :)
July 7th was Danny's Trache Day. 5 years ago Danny had his trache surgery. It's weird that he's had the trache now the same amount of years he went without one. Boy what a difficult decision it was to make, but I'm so glad we did. His respiratory status is so much better since he's had it. He has such a better quality of life, not struggling to breathe all the time.

Avrianna had her first Camp up in Crystal Falls MI at Camp Batawagama. Ya~ say that 5 times fast! She once again had a blast. I wasn't sure if she'd like to be gone over the 4th, but I've been informed that every 4th she'd like to be up at Camp now. Silly me, what was I thinking, lol
We are gearing up for a BIG weekend ~ Dive Zones are Friday, Saturday, and Sunday. Hold onto your hats.....now we'll find out if she qualifies for Jr Nationals in August down in TN. I'm sure she's excited but alil nervous. She knows she'll have to bring her "A" game this weekend, but I hope she can enjoy herself too. She is now all fitted for the part ~
Diving, Supporting, and Promoting the Fox Valley Dive Team....when did she grow up?

She's decided it's time to give her room a facelift. So we've started to redo her room. She went from a loft bed high in the air to her having her bed on the floor, I think she'll want it on a frame, but for right now the floor it is. The fishy's are now gone, yay me !! Just one more project I had to do. We had a friend that wanted to take them, so ba bye :) She also wants the BIG underwater sealife wall mural down :( I'm bummed about that as I think it's cool, but I guess its not cool for the tween. We will be taking that down and painting Purple and Grey strips (vertically). I'm always up for a challenge, but it might take me alil while before it's completed. Once I get it done you know I'll show you photos :)
Av has a few days off and then next Saturday it's off to the 2nd camp of the summer, Camp Onaway. This is a camp put on by the Boys n Girls Brigade. She's heard wonderful things about this camp, and can't wait to go.
Talking about Can't wait.....she is SO EXCITED to start 7th grade at Shattuck Middle School. We were at the store today and she already started getting some school supplies. Really girl?!?! Slow down!! I'm not even ready for school shopping yet, lol

The Osero's are now owners of a '14 Hurrican 216 Fun Deck Boat. It's a deck boat which has the floorplan like a pontoon and the hull of a regular boat.

It has plenty of room for Danny and enough power to pull skiers n tubers. Not at the same time of course. Danny enjoys tooling around down the river so when he's aboard it will be a nice quiet cruise. Dan, myself, and a friend of ours (Ricky) took the boat on it's first voyage. We took put it in the at the landing by our house which is on the lake and then went down to the river. I have to say I'm a river girl....I did NOT like the lake it was so rough. Yes, I'm a sissy!! I was all for taking the boat back and saying screw this brilliant idea. We've had it on the water a few times since then and have had a good time. Now that we have a better idea of what to do and not to do, I think the next time we'll bring Danny on it. Av is in 7th heaven now that we have a boat, she's all about the tubing and skiing....I know what a surprise, lol. We have a tube, but it's alil too small and the rope is too short so I guess it's off to the store to get ski's, tube, and more rope.

I'm all for the chillaxing and tooling down the river with Danny :)

See you guys at home.....I'm not going back on that lake. NOPE ~ I'll take Nanny's car home :)

See ~ he can relax. You don't see it often, but he does.

Ready set go!!

Captain Dan

Captain Av

As you can see Av doesn't like boating at all, lol. We took my Mom n Chuck and my Aunt Bonnie n Tom for a ride down the river :)

Last week I went and got my butterfly Tattoo fixed, improved. Once again Jake at Wicked Ink did amazing work. My butterfly actually looks like a butterfly now :) I had the words "I am strong enough to live this life" added also.

My Niece wanted a tattoo to. She wasn't ever good with pain....but she did great. I really love her choice. It's totally different then what she was thinking about getting and in a different location. Funny what you can up with sitting at a tattoo parlor long enough :) I think it's beautiful !

Now onto the 4th. Av was up North at Camp so Dan, Danny, and I went to Tomahawk to see Papa n Nana and hang out with some family n friends we don't get to see often. We had to pick up Av from Camp on the 5th and Tomahawk was a nice halfway mark to hang out at. The weather was wonderful, we just had an hour long rain during the arts n crafts show, but other then that it was great. We went out to eat, saw the parade, and stopped at some bars. It was very a relaxing time.

After busting my arse to get everything and then some packed in the RV I was seriously reconsidering why we were going. There is alot involved to get Danny out of the house for even 1 day.....ALOT. But then I saw this smile and I just melted. He loves to be in the RV and out n about. That makes the hard work ALL worth it

Ready to GO!!

Danny made Papa n Nana a flag from his footprint :)

It rained while we were at the arts n craft show. Thankfully they had some tents. Nana always wanted to Pole dance, LOL. She was holding the tent poles when the wind came whipping through

On our way to dinner.....Danny, Dan, and Papa Dan ~ It's ALL ABOUT Dan :)

We Drove up to Minoqua and at Norwood Pines. Very nice restaurant! They had these edible flowers on the our dinner plates. Neat!!

After dinner we met up with some friends for a birthday celebration. If you can't beat em, join em. Right Danny?!

Curly, Moe, and Larry.............. Happy Birthday Jimmy!! Glad we were there to celebrate with you

Tami and Jimmy ~ what a great people!!

Getting Danny in the RV ..... what a back saver this is!!

An this is how he showers in the RV.....look at all that space. Both of us fit in there :)

Happy 4th of July!!! Ms Annie ran for Danny at the Freedom race on the 4th. GO ANNIE GO!! We are so proud of you ~ thanks for running 4 Danny. We LOVE you Annie!!