Amazing things... (this is a long one)

We are at the zero hour, people.  Friday, January 27th is just around the corner as I begin typing this blog and that means Claire will be is scheduled to be coming home.  She will be coming home, but only if her medical equipment comes on time and they deem her release from the hospital safe (she needs the medical equipment at home to make it a safe transition).  

Thumbs up from Claire!



Now, the  the truck carrying medical equipment DID stop at our house- but it had all the wrong stuff.  Did we need a Hoyer Lift?  Yes.  Was an hydraulic lift on the truck?  Yes.  Was it the right kind of hydraulic lift?  Not so much.  Did we need a hospital bed?  Yes.  Was there a hospital bed on the truck?  Yesireeee.  Was it the right kind of bed?  Ummm. No. 

SO....

They say they will "work on it" and get the right stuff to us tomorrow so Claire can come home.  We'll see.  I'll keep you all posted on THAT little development as I know more. 

*So exactly what is amazing about this part of the story?  Well, we've got a LOT of work still left to do on the home.  If the medical equipment isn't here, then Claire can't yet come home.  Which gives us that much more time to prepare the home for her and make it right.  It's a hiccup, and could end up making her wait a little longer (not to her liking), but in the end it really helps on the home front to make her return home easier and much more memorable.

Beyond all of this, the day started out just as anticipated.  Woke up early and got Jacob off to school for his half day due to teacher in-service.  Karlee was able to get a sitter at the hospital -basically a girlfriend to hang out with Claire while Karlee was away- and was able to come home to see the progress and get shoppin' for some paint.  By the time Karlee got home we already had the tile guys here at the house prepping the shower for the tile installation (set to begin tomorrow - 01/27).  While Karlee was out at Home Depot getting paint, she had a question to ask one of the associates, just about quality of brushes, and in their conversation ended up asking for a manager to discuss some assistance they had been looking into for us (I had previously been introduced to the manager by one of the associates and was told that Home Depot would look into seeing if any of their vendors would be able to donate materials to us - that was still pending at the time Karlee went shopping). The "associate" told her he actually was the manager and she proceeded to tell him about Claire and that he was in email contact with me about the process.  By the end of the conversation Karlee had her answers and thanked him for his time.  The manager then asked if there were any other items she needed for today, then proceeded to walk Karlee straight past the checkout and help her out to the car with supplies needed for the day.  When she asked about paying for the supplies he simply said, "It's taken care of - if you need anything else, please let me know." 

*Amazing?  Yeah, pretty self explanatory that one!

The beginning of tile work started off poorly.  The lead who came with the installers took one look at our floor (a concrete slab) and said that it "wouldn't work" because it was just a drain pipe in a flat slab.  I explained to him that it was determined that even though the slab was flat, a thin layer of mortar or some type of concrete mix should be able to be floated to create the proper slant to allow for draining to the drain pipe.  The tile lead proceeded to explain the importance of proper drainage and said that they would be chipping away the concrete in order to create the proper slope.  A change that would take most of the day and set the project back a day.  Well, he's the professional with this, so I told him to proceed.  The chipping lasted almost the whole day. 

*What is amazing about this?  It solidifies that we have the RIGHT people doing the job.  This isn't just some guy coming in and installing something per the order requested.  Everybody involved knows the story about Claire and every single person wants to make sure that all of the work is done properly.  In this day and age, this level of customer service really is amazing.

While the tile prep work was going on I proceeded to work outside to move some of our landscaping rock around to get ready for the group of people who were going to come out and help remove our paver driveway and get it ready for a concrete pour (set for this upcoming Saturday).  I got some of the rocks moved and around 3:30, three fellas showed up to begin helping clear out the materials.  Then another came along and started helping us.  Then another.  Then another.  And yet another. These are all people who came at the urging of our good friend Becky, who put out the all hands on deck request to the good people at her church.  The next thing I know, I have AT LEAST two dozen people in my front yard helping remove this driveway.  The whole set of pavers was gone and stacked neatly on wooden pallets within an hour and a half.  Then, when that was all said and done, we all got to work on running the lines to make sure the dirt was at a low enough level to do a proper pour.  That work is currently ongoing and will be picked up tomorrow to finalize for Saturday.

*If you've ever had a big task ahead of you and were the only one there to do it, you know that sometimes it can seem like an insurmountable task.  That was this driveway project for me.  When 24+ people showed up though, it was over in a blink.  And the beauty of it all, very few of these people were anyone I knew prior to this day.  They simply showed up because they wanted to help make it better for Claire.  Amazing.

Now while all of this was going on, Karlee had come home and had to return to the hospital to be with Claire.  So, she gets back into our car, turns the key, and -click click click click- the car won't start.  We figure that it's just a dead battery, we'll jump it with the van and get it running.  She would then take the van to the hospital and I would take the car to get a new battery.  Dead batteries happen all the time here in Arizona and this seemed no different.  After 15 minutes of charging with the van & jumper cables, I tried to start the car.  click click click click  SHEESH!!!  So I called our mechanic and explained the situation.  He said it sounded like possibly the starter was out and to have it brought down to him to check it out.  I called roadside assistance and they had someone out there lickety-split and away went my vehicle to get worked on.  "Well that's just great..  Another unexpected expense," I thought.  After about an hour my mechanic called and explained it was just a dead battery and the jump start didn't work because the battery itself had a dead cell in it.  The battery would need to be replaced.

*What's amazing about this - well, I didn't tell you the end of the story there because that's what's amazing;  The battery, they said, had been replaced at their shop about 1 1/2 years ago and was still under warranty.  THEREFORE - it was replaced without cost and the car was ready to be picked up.



Just call Tony & Shane - they'll help you with your vehicle.



****Special note:  To anyone who resides in Phoenix's West Valley, my wife and I have been using Midas for the past 5 years and will go nowhere else.  Tony & Shane at Midas know customer service and they don't take advantage of you like some auto repair facilities.  I highly recommend them.

All of this though, pales in comparison to the MOST AMAZING thing of all from today.  The newest update on Claire.  While Karlee was home she told me about a new development which occurred the day before.  They had both just woken up for the day and Claire let out a big yawn and stretched her arms up above her head.  While stretching out her arms (according to Karlee's eyewitness account) Claire also stiffened and straightened her legs into a full flex and stretch before they went back to their relaxed and immobile stance again. 

Amazing!

Going Home

Mom here.....
Word around here is we will make our great escape on Friday! I am so happy that you cannot see the silly silly dance I am doing everytime someone mentions the escape date....truly it is not pretty. Claire has indeed made several attempts to roll on out a few exit doors. Funny until you learn she doesn't want to go home at all but she is planning on rolling all the way to Chuck E Cheese. That is what I am told every hour or so on average and games are to be played. Here in the hospital you know you are in good favor if you are invited to this "girl party" so the nurses will ask one another if they are indeed going to the event of the year or if indeed they did something yet again to get bumped off of that list. So far Mary is the clear winner, GO MARY!

Tile starts tomorrow and the medical equipment is scheduled to be dropped off

Becky Higgins ~ Project Life

Sooooo..... a wonderful and kind friend of mine offered to put ads for the first time ever on her fancy website for the month of February. Many people in the scrapbook world know all about her and for those who do not please take a peak here.

Read Becky's post about Claire Bear here. You will find advertising information and Becky's help for Claire.

A tour..

So, not much time to spend at my house and do a lotta work BUT in the time I do have I try to be productive.  Here's a video of what our house looks like inside, on the bottom floor where all the modifications are taking place.  The narrative is a little dry (ok a LOT) but I'll try to improve...

Another week, a little more progress.

Wow, it has been a long week.  It was my first week back at work and Jacob's first week back to school.  Karlee now is pulling full weeks at the hospital with Claire and I'm handling the weekends - or at least one of the weekend days, depending on how Karlee is doing with the extended stay.

This week she had me only stay over at the hospital one night, tonight, so she could get some sleep in a normal bed and rest up for the upcoming week.  So, I find myself here at the hospital, unable to sleep.  What better time to blog, right?  :)

Like I said above, it has been a long week.  Going to work and listening to my customers who have had damages done to their homes and are needing help fixing the damages has been a little less than therapeutic.  Everything going on with Claire and the modifications I need to make to my own house makes everything else seem like it's much less important.  Now, I still feel sympathy for those people who are calling asking for help, and I do help them and get them through their insurance claim, but jeez would it be nice if I could claim my remodel through insurance and only have to pay a deductible!!  Oh well..  We need the income and I likely need the distraction to help keep me somewhat sane. 

Jacob has transitioned back to school nicely after the Christmas break and brought home his progress report.  He is earning a 3.1 GPA to this point of the year and doing very well at keeping up on his homework.  He is a fantastic young man.

Plenty of updates on Claire too.  She has been doing very well this week with her therapy.  I think that having Mom around with her the entire time helps her feel a little more settled and allows her to focus more on what she needs to get done here so we can all get back to being at home.  Day in and day out more and more seems to happen with Claire -in a good way- that gives us hope for a greater recovery than anyone anticipated.  She seems to be showing more movement, both involuntary (reflexes) and voluntary as the days go by.  She has, on command, been able to wiggle her toes and shake her legs, although slightly.  I haven't had time long enough with both Karlee and I here to get the videos she has on her phone loaded to the computer, but once I have the chance I will get that done and post one of the videos to the site so you can all see how Claire is currently able to make those movements.

Claire is also getting very good at handling her wheel chair and really understands how to move the wheels to get the chair to go where she wants it to.  I'm very impressed with how well she is doing with that, especially considering how difficult it was for her to grasp at the beginning.  Like I have said throughout the blog - she is a trooper!

As I mentioned in last week's post, we did have a meeting with all the doctors and therapists, two representatives from the Department of Developmental Disabilities (DDD), behavioral health representatives, and the teacher staffed here at the hospital on January 12th.  There were positives and negatives throughout the meeting, but essentially we discussed what insurance will be able to cover (wheelchair, hoyer lift, transition boards), what insurance is not able to cover (home modification, vehicle), what the DDD can assist us with (POSSIBLY home modification - but details on exactly what they are able to do are pending) and what they won't assist us with (vehicle), and the current prognosis on Claire from the doctor and therapists and how long they expect her to be here.

The hospital equipment person has placed the order for the hoyer lift to be delivered to our home - it is an hydraulic lift which helps us to move Claire from bed to chair and vise-versa, and also can help us to lift her to a standing position for therapy.  The wheel chair will be ordered after measurements are taken and closer to the time she is discharged. 

The DDD hinted at possible assistance for home modification but wouldn't commit to anything.  They said they were going to contact me to schedule someone to come by and look at the house.  They were quick to point out that whatever assistance they do offer would be limited to one (1) ramp into the home, and they would not assist with any exterior modifications (ie: changing our driveway from brick pavers to smooth concrete - another change we realized we will need to make).

We will see where this all goes.  We know that moving forward Claire will be in a wheel chair.  One of the doctors seems pretty optimistic that Claire will walk again, but that it's just a matter of time (time being anything from days to months to years) but not all of those involved are quite that optimistic.  Karlee and I are continuing to hope, but know that if no further progress is made by Claire we are still happy and proud of what she has been able to accomplish.

So far in just one week!

Dad posting here again.  I've had a bit of time away from the hospital as the final days of Uncle Bob visiting were upon us and it was getting down to crunch time to get the downstairs of our home emptied out and begin preparing it for Claire's return home. 

Keep in mind, Claire likely will be in Rehab for another 3 to 4 weeks, but we've got a lotta work ahead of us to get this thing ready for her.  So, while Karlee stayed at the hospital with Claire, and after Uncle Bob helped move most of the furniture upstairs and unfortunately had to depart back to California, I was left with the task of moving the rest of the furniture out to the garage and actually make it all fit!!  Well, I succeeded and have almost the entire downstairs emptied and gutted right down to the concrete slab.  I say almost all of it because the kitchen and guest bathroom, for the most part, are still intact.  The linoleum flooring is going to be a bugger to pull up and after doing all the carpet, pad, tack strip and baseboard removal I needed a break.  Plus, we still need the kitchen in a working order, so I have to get creative with how I handle the tearout there too.  Hmmm. 

These photos are just of the front room and the living/dining room area.  In the bottom right picture you can see a dark doorway.  That doorway leads to what will now be Claire's new bed/bath area.  Originally built as the guest bed and downstairs bath, we're thinking we will probably modify it to be one full suite with only that front archway acting as the primary door as its width won't need to be modified.  The doorway then to both the bath and the bedroom will be taken back all the way to the walls and ceiling to give it a more open feel.  The bath, as small as it is, absolutely has to be opened up as it will have to be changed to be as wheel chair friendly as possible. 

***sigh*** 

Oh, the work to be done that I never imagined I would ever have to do.. Ever!

In the meantime, while I was at home playing with deconstruction of the home, Karlee was at the hospital with Claire, focusing on getting her better and helping her progress.  There were improvements, I am happy to report!  Claire has developed some voluntary movement -albeit slight- in her legs.  More to come on that in a later post (we have a video to put on here but I don't have it with me right now).  Overall, Claire is doing very well at focusing on working hard to, as we say, "make her legs wake up" and through all the frustration she has with this ordeal, typically has a smile on her face by the end of the day. 

We have a family meeting with the doctors, therapists, and social worker on January 12th to discuss more of a roadmap of what we are to expect and how to prepare for Claire coming home.  During that meeting we should find out what will and will not be covered by insurance, what resources are available out there for us to tap into for financial assistance, and likely a more clear time table for when to expect Claire to return home. 

As always, when I get more information, you'll get more information. 

Furry Friends

Claire has a new friends all over the place and nothing will keep her down. We are all so blessed that Phoenix Children's Hospital has many volunteer dogs. Sometimes no one understands just how hard all of this is and her pals can perk her right up.

We have lots of tiny progresses to report and all of them add up to the fact that she is proving her doctors with textbooks wrong. Atta girl!