Tuesday, August 26, 2008

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


Rose said...

Thank you so, so much for posting all the pictures and information about Danny's equipment! He is so beautiful and his smile is beaming. You can tell he really loves all his cool stuff. You have done an amazing job. I have a 2-year-old and up until now, we have been able to make do with things that are easy to find and buy : ) to make sure he is comfortable. But as he is growing, I'm at a lost as to where to go next with what kind of equipment he needs. Even the doctors and therapists haven't given very much information. So thank you, thank you, thank you!

Angelique said...

Could you tell me about the blue bean bag lounger you have him on? What kind is this, and where did you get it? Thank you so much!