I'm happy to report Lil Lacy continues to maintain her sassy spunky self with the new low protein diet and medications that vet has put her on to help with her liver condition. What a relief that we are able to treat her and hopefully give her the quality of life she deserves !! She definitely has a sweet spot for Danny and she has managed to become an important member within our family.
Got Popcorn Dad? We Like popcorn!!
Last week I had another great parent/teacher conference on Av. I'm so proud of her hard work and demeanor at school....BUT at times I have to wonderful if this wonderful kiddo that rave about is really my kid, lol. I'm sure many can attest to the 180 different spin these kids take from the way they act in the house around us parents to how they act in public.
Av had a nice time at Winterfest....
I'm always intrigued when I receive a message from Av to look at her snapchat postings. It's like Russian roulette as to if it's good new or not.... this one
We finally made Danny's vent transition from the LTV to the Astral vent. It wasn't as smooth as I was hoping for but I see light at the end of the tunnel. Danny did remarkably well with the transition there was just MANY hiccups and issues we ran into along the way. Not surprising the biggest issue we ran into was the lack of communication and mistakes we encountered during the unnecessary 24hr impatient stay to the Children's Hospital. Thankfully it was only 24hrs and we were able to get out of there before they screwed him up or he got some bug to make him sick. We have been working closely with Danny's Respiratory therapists to tweak things that have shown up (mostly nuisance alarms) and now I think I can safely say .... I REALLY LOVE this new vent!! I was pretty disappointed/discouraged the first week but thanks to his wonderful RT's they have made the world of difference with some setting changes. Now if only we started this venture with them and not the power struggle with the powers that be in CHOW, ha now that is wishful thinking. This new vent is going to open up many new adventures for Danny as traveling will be so much easier with the smaller lightweight machine and the longer battery life.
Old LTV Vent
The old vent was so noisy
Listen to the difference .... it's so quiet! It will take me awhile to get used to the lack of noises. Danny could definitely sneak up on me and scare me now, as the last vent I could here clear across the house
Danny got a BIG BOY bed. It was hard to take out of the room his Sleep Safe Bed. He was given that bed in when he was just 3.5yrs old by Make A Wish. His wish was granted each and everyday when he was in it. It was/is an amazing bed BUT we felt Danny needed a bigger bed for more room and one that would adjust in height to help the nurses backs out.
Out with the Old ~ Locally custom made Sleep Safe frame made around an articulating hospital bed.
In with the New ~ Flex-A-Bed hi Low ! At it's lowest positions and look at all the room for me to get in and snuggle with him. Dan is building a "headboard" of more shelving behind the bed and a wood base to wrap around the metal.
at it's highest positions, the bed also has massage and an under the bed LED light.
Danny also got a new CPT vest "Mr Jiggles". This one is just the vest that is battery powered and has all the jazz inside the vest so no machine or tubing to hook up too. This vest also has three different modes to help with his airway clearance Percussion, Vibration, and drainage. It's bigger then I has anticipated it to be, but it seems to work out well and should be easier to use when we are traveling vs the other one.
Today we are heading down to Milwaukee Children's hospital to get some xrays of Danny's back and hips then to talk with his Orthopedic surgeon to see if there is anything he sees that could be causing Danny the pain he's been having. It's one of those I hope the find something so we can fix it, but I really don't want to find anything that needs to be fixed appts. Tomorrow we will be headed the other direction up to Green Bay to have his ITB pump filled and a routine appt with Danny's Neurologist. Then it's down to the chicago area on Friday for Av's Dive meet.
I've been dealing with more n more tingling in my lower legs n feet and forearms n hands lately so I have put in a message to have my doctors order up a MRI of my head, neck, and back to see if there is any new developing lesions in there. Laying in the MRI tube for 2.5 hours is not what I call a relaxing time, blah! Other then that I have been just plugging along. Dan and I flew to Indiana last week and picked up our new RV. Not surprising there are a few things that need to be addressed but I'm hoping once everything is worked out that it will be an amazing vehicle for us and our adventures.
The RV with the bump outs open ~ the new table and couch
Bigger roll in shower
The couch folded down ~ Danny's area
Kitchen and Wheelchair lift door
The lift (not our RV but that's what it looks like)
How the inside looks when we are driving down the road.....TONS of room still
It's now official we are owners of a Blimpie Sub shop! Dan flew down to Arizona and finalized all the paperwork and such. This week he will be meeting with the contractors to get the ball rolling with constructing the site.
I believe the ice fishing is coming to a close and the shanty is going to be removed today. The ice was very unpredictable this year and the warmer weather lately hasn't helped that. Last week it rained more then snowed and this week the temps with be above freezing and even in the 50's tomorrow so I can assume the ice will become even more unsteady.
BRING ON THE SPRING!!
Thanks for stopping by and checking in on us!
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