Heading to the U.P.

After alot of pondering I've decided to once again pack up the RV to head up North in Upper Michigan. My dad has a cabin up there and my sister's family is going up to visit with him so I figured what the hey. I know this might bite me in the butt with Danny being so congested, but it's our holiday weekend too! We have EVERYTHING packed in the RV so if anything should come up I'm going to be prepared and if this get too bad we can go home. I'm crossing my fingers things work out. I don't get together with my Dad very often so I'm hoping this is going to be a (long overdue) fun time together. Dan is going to drive the RV following me in the "big" van to Green Bay as it's going in to have the new lift FINALLY put in. Then from there it's off to the U.P. On the way back home we are then stopping at my Mom's (oh the joys of a divorced family) to have a cook out on Monday not only for the holiday but to celebrate all of our birthdays in September: Myself, Dan, my sister, my grandfather, and my dog too....oh and our Anniversary is this month. Busy Busy Busy! I know we won't get on the computer up there so I will post once we return home. Hope you all have a safe, healthy, and happy holiday. Please don't forget if you haven't already click on the link to the left and Pledge us on our Make A Wish walk. All pledges are due in September 5. You can help to make Wishes come true to children with a life threatening disorder, WE NEED YOUR SUPPORT! Take care!

Danny's Equipment

Pic taken May 2010 ~ from Little Foot Photography

I've been asked what kind of things does Danny have to help with his quality of living so I am posting pictures of what we have for all to see what my little man gets to do. I will link this post to the left so you can easily access it later on. And as we add or subtract things I will try to keep this up to date. Feel free to ask any questions or give any comments!

Danny is transported in our family Full Size Ford Van that is equipped with the Easy Lock system and has a lift called the Vangator II.

As you can see Avrianna can still walk through when the ramp is up so it is nice that the ramp doesn't take up and WHOLE door opening!
A VERY dear friend on mine does custom hand pin stripping on vehicles. I have the blue sign hanging in my front window all the time so when he came out to put a stripe down the van he surprised me with MY ANGEL. THANKS Calico!!
To help us get him around the house we have a ceiling lift installed throughout the home.

Danny's Room

Haning around in his sling like a swing

We have a Firetruck Changing table in his room that has multiple drawers to keep many of his supplies

He likes to use the Light Box when doing some therapies to help him "see" what they are doing.

We've printed our 8x11 pictures to put in front of Danny to give him the opportunity to make a choice of things HE would like to do :)

Danny is fed through a G-Tube and using the Enteralite Infinity pump
This is his Y extension connected to his G-Tube Mickey button

His mickey without anything attached to it
Zevex Enteralite Infinity feeding pump that get attached the Y extension then it feeds him throughout the night.
Here is his ITB pump - Interathecal Baclofen Pump. This "puck" was implanted almost 2 years ago. He is starting to grow into it. Laying down it isn't bad, that's why his is reclined for "space". When he sits more upright the puck gets stuck on his hip and hung up in the rib cage. From the puck runs a catheter into the spine. It was run all the way to the base of his neck but since then the cath has slipped to the mid back. The puck has a computer that administors baclofen directly into the spine helping keep his tone under control. Before this he was on ALOT of baclofen and 3 other meds to control his tone and he was SNOWED plus still spastic. I has been a god sent but also has had it's issues. The life of the pump runs anywhere from 5-7 years before it needs to be replaced again.
Xray taken 2101 showing placement of the puck and his severe scoliosis (VEPTR surgery pending July 2010)



Danny uses a pulse Oximeter, Oxygen, and is Trached to help with his breathing issues. He currently has a 5.5 Shiley Trache with a "nose" during the day

He uses the cool mist humidity system at night

I've also starting using the essential oils which are a natural way to aid in cleansing the body to help with breathing, kicking a bug, relaxing, sleeping or for whatever kind of oil you get (as there are alot!) In addition to each room having it's own scent I've painted one wall in each room a different color in hopes that in using the scent of smell and giving him a "bigger" target to look at he will know where he is in the house.

The most important thing in our lives to help us with Danny is his Pediatrician. I is the best! He takes care of Danny when most doctors tend to run the other way. Our family truely would not be where we are today without all of his help. The one and Only Dr Kasper. THANK YOU for ALL the YOU DO!!


Danny's Physical Therapist
Mr Dan

And Peter

Danny's Wheelchair is an Invacare Solara with the tilt and recline options. And we have been attaching different head switches to see if his can activate toys by pressing the switch to turn it on or off. With the Hawk head support system for when in therapy



Danny's Big Boy Bed given to him through MAKE A WISH - The hospital bed has the massage, head/toe up/down, and memory foam mattress from Verlo and the adult crib around the hospital bed was designed by a local man Steve Lockhart


To help me with his showers we use the Leckey Bath Chair or Beluga Bath chairlift.
Then we built a home made changing table so he can stay in the bath room nice a warm for us to dress after the bath. Alot easier on the back!

Danny LOVES to swing this is his Jenn Swing that is set up on the jungle gym outside.

Here he is in the net swing that is currently in the house with an oversized pillow that he lays on. I have toys all over it so he has stuff to look at.

Danny's Wike - Special Needs 3 in 1 Bike trailer, jogger, stroller. So he can be comfortable and apart of our bike rides.

To aid in different positioning and to work in body/head control. The gray yoga ball, his sister helping him balance on the red peanut ball, Danny's tummy time on the wedge looking at his FAVORITE thing Spinoza Bear (bear that plays music and talks made for kiddos that have disablities, highly recommend!), and in his blue rocking bean bag chair.

Danny in his Leckey stander sport'n his Cascade AFO's Love them!(http://www.dafo.com)

Danny in his new walking sling Kaye Suspension Harness (medium)

Danny's freight train leg immobilizers Danny sitting in his Leckey corner floor sitter with the sensory mobile that his OT and I made for him.



Mr. Jiggles aka the PT Vest. Danny uses this 2 times a day or can use up to 4 times a day when ill. This device fills the vest with air and then bangs on him all around his upper torso to help with moving his secretions out of his lungs. In addition to a suction machine to help pull out all the goo! LOL And we added the cough assist to help him pull the goo up so I can suction it!

His new and improved CPT vest that is washable ~ comes in three different colors got in may '10

The hand and arm splints that go on every night to help stretch him out during the evening ~ Called Cozy splints

Puzzling??

Well we came back from the doctors appt frazzled. Only because everything looks great with Danny, blood work, urine test, ears and an over all check up. So we are chalking it up to Danny being Danny and we'll go with that. All weekend he was whining and crying but get him into the Dr. Kaspers office and he's smiling (even when getting a finger poke), ok make me look like a dork. I'm so glad there is really nothing wrong with him, except his crappy breathing with this cold, but if he was just missing Dr Kasper there are other ways of going about see him I guess. Heehee!
I took the kids out yesterday to pick up our Make A Wish walk shirts and go shopping. It was wonderful to be able to put a face to a voice behind the MAW program. She was so nice and was wonderful with the kids. Our shirts are picked up and we are pre registered for the race so just awaiting the day. We are excited to particiapte in such a great program. Please, if you haven't already, click on the link to the left and pledge us in our walk to help make Wishes come true to children with a life threatening disorder. We need all of you support! Pledges need to be by Sept. 5th.
Shopping was alittle frustrating to say the least......I guess I was niave to the fact that "this" was to get easier as time goes by. It's was a good day don't get me wrong we found alot of cool stuff on sale. But only for Avrianna....then the more I tried to find something for Danny the more upset I got. The realization that even a new born toy is too complex for him to play with made me sad, he ended up with baby powder and wipes and I was upset! Boy does he get screwed, I can't even get a toy at the store just because as there there are NONE. I felt so bad for him, I just cried. Guess this won't get easier! I think I am going to do what a good CB friend does and start getting T-shirts with funny, smart, off the wall sayings. He will definately use them and we all can enjoy reading them.
Take care!

Uncomfortable

Danny continues to be uncomfortable. He whines alot and will still cry out. He has never done this before even after a surgery that would warrant this. I'm just frustrated as I can't pin point the problem: ears, hip, or just miserable from this bug. I am calling Dr Kasper this morning to see if we can come in and he can take alook at him and give me some answers. The kids and I went to a local parade yesterday, thinking we were ok to do that, and it was more work then I cared for. Danny wanted nothing to do with his chair and cried alot so for most of the time I was hold him, ARGH! My back is paying for it today carrying a 50 lbs boy that has no tone to help me out for 1.5 hours does a wonder to your back! I will try and post later if we are able to get into the doc. Here is story I found totally appropriate on another site that I follow, enjoy!
Dan raced on Saturday and had a pretty nice night. It's a learning curve this year as this is the first year he has been racing full time. So he is trying to dial the car in and learn what it can and can't do. For the most part is was a very productive night!


A Mayonnaise Jar and Two Cups of Coffee.


When things in your life seem almost too much to handle, when 24 Hours in a day is not enough, remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.

The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand.

The students laughed.

'Now,' said the professor, as the laughter subsided, I want you to recognize that this jar represents your life. The golf balls are the important things - God, family, children, health, friends, and Favorite passions--things that if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter like your job, house, and car. The sand is everything else -- the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls.

The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. So... Pay attention to the things that are critical to your happiness. Play With your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. 'Take care of the golf balls first -- the things that Really matter. Set your priorities. The rest is just sand.'

One of the students raised her hand and inquired what the coffee represented. The professor smiled. 'I'm glad you asked'. It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend.

The Bug

Danny continues to be very congested and cries alot. Poor thing just can't breathe very well with being stuffy. He has started a fever so hoping it's just do to the extra effort with breathing not an infection. We are monitoring it close. We were to go to the Kimberly Roller Skating Rink tonight with our support group families but not too sure we are going to go now with Danny not bouncing back well. Maybe today he will have a better day, but it's not looking to promising.
Avrianna's color is back and I think she has gotten rid of the bug. I can only hope they don't decide to pass this thing back and forth now! She is back full tilt into her schooling, as we gave her a vacation from it when we were on the road. I have her signed up for some programs this fall thru the Rec Dept here that I think she is really going to enjoy, drama, art projects, and her favorite the Daddy Daughter formal Dance in the winter. Swimming will start up again soon so she'll be back in the water before she knows it.
Dan is off racing today (as long as the weather holds off). Boy this year has been a difficult one with racing and the weather. I spent all afternoon yesterday putting the decals on the car of all the sponsors for him and his racing. I will try and post pictures of the car all done up soon. These are old picture of the car and one of the times the kids went to the races.
Last night I had a girls night out and it was great. We went to a local park and watched Boogie and the YoYo's play again. Yeap I'm starting to become a groupie. They are awesome! I even bought a T-shirt and CD and will try to get the band to sign them.
Well it's FINALLY official........WE HAVE LAND!! After 1.5 years of deligently looking for the perfect spot to put our forever home on we have it. We are staying in the school district so Danny's therapist can still work with him and we are going to by a subdivision so we will still of the space of our acres and yet near children for the kids to make friends. I am so excited. We are planning on starting the digging in the next couple weeks. A HUGE THANK YOU to the best real estate agent ever, WOODY! She put up with us for so long and never gave up on making our home have an awesome spot. Or home is still on schedule to be in the Fall 2009 parade of homes here in the area so it's about 1 year away before we'll be able to move in, but time will just flying by.