Life with Claire Bear

Home and Loving it!

2012-02-11T20:44:00.000-08:00

Mom here....
Soooo many changes. Wow, there are so many changes and we are jumping in with open arms. Claire is doing very well and I have so much to report on and as you can imagine. I am definitely not the one who writes in family so Chris and I have devised a plan. I will hand write in a journal and he will type it all out and arrange my thoughts so you can all understand them.really you all need that! Chris has taken most of the house stuff and I am settling back into mom stuff like cooking and cleaning. I am sitting down for the first time truly in weeks and I am so very tired. I am logging about 4-5 hours a night of sleep right now and I do believe that tonight will be the night that I get that magical big night of solid sleep. I'll let you know.

I need you all to know we are home and well. I needed to tell you THANK YOU so very much for Claire's cards and letters. She is so over the moon for mail. Thank you for being so kind. I will get busy in my notebook and get you all up to speed. Hugs to you.

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

2012-01-26T23:35:00.000-08:00

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

2012-01-25T22:36:00.000-08:00

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

2012-01-24T15:35:00.000-08:00

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..

2012-01-17T23:36:00.000-08:00

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.

2012-01-14T23:36:00.000-08:00

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!

2012-01-08T00:44:00.000-08:00

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

2012-01-05T21:32:00.000-08:00

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!

Frustration . . .

2011-12-30T23:18:00.000-08:00

The standing table

Claire is such a trooper!!

Karlee had the last 24 hour period with her and said that she has done very well, but seems to have gained some additional awareness that her legs are just not functioning when she wants them to. Karlee said that during PT today she grew very frustrated when she was sitting up on the balancing table they have in the gym because she couldn't just get up and walk away.

Claire, really, just wants none of this hospital at this point - and rightfully so. She is so used to being free to roam and go where she pleases that this new inability just makes her mad. She never liked being told no in the past, now her legs are essentially telling her "no" and it just doesn't bode well with her.

When I arrived at the hospital today Claire was sound asleep after having been exhausted by PT and pain meds. She had some additional visitors during the day; Karlee's friend Becky and Becky's sister and kids stopped by (the kids are 12 and 15 years old). Claire also had one of her teachers from Accel School come by to say hi.

*NOTE: I point out that the kids were 12 and 15 because the hospital has, just today, instituted a rule that no child under the age of 12 is allowed beyond the front desk - No Exceptions - for fear of spreading unnecessary colds, flus and diseases. Understandable - but now even Jacob cannot visit his own sister in the hospital. :(

Our dog Sue

After Claire woke up this evening she was grumpy - and the lady who came in shortly after Claire woke to do some breathing therapy with her didn't help. She got so grumpy that after the nurse left she was directing it toward me. So I sat down on the bed and asked her if she just wanted to go home, at which point she cried and I held her until she was done. I explained to her that I want to go home too, and I want her home, and so does Mom and Jacob and Sue (our dog), but that in order to go home we need to keep working hard and following the nurses orders. She seemed to understand, took a breath and then had an entirely more positive attitude.

She also was hungry (she had slept through dinner time), so I ordered up a turkey sandwich, jello, milk and 2 oreo cookies for her, which she devoured. Poor kiddo was hungry!! She and I then watched Despicable Me and she played on the computer. Until she fell back to sleep for the night.

God bless everybody. Keep her in your prayers!

A Good Day

2011-12-29T03:07:00.000-08:00

Claire getting her nails done

Karlee spent the first part of the 28th with Claire at the hospital, having stayed the night with her from the 27th and I arrived at the hospital to take over and let Karlee get home for some much needed rest around 5pm. Karlee said that Claire had a very good day and worked super hard in her three therapy sessions.

Claire has been talking non-stop about getting out of the hospital and how much she wants to go to Chuck E Cheese when she's finally out. That being the case, we've developed a reward system using Chuck E Cheese tokens: For all the times that Claire follows directions from the PT or OT therapist, we award her a token for her to use when she gets out. It's only day one, but it seems to be working pretty well.

Karlee also told me that Dr. Kaplan (the doctor who oversees all of the patients in rehab) stopped by today and indicated that Claire may be in rehab for a matter of only weeks, not months. This is good and bad news, in that they discharge a patient from Rehab when the patient plateaus and no longer makes progress....but....Dr. Kaplan did make sure to mention how far Claire has come since the accident. She has learned quickly how to use her arms to help shift her body weight around and to manually move her legs into position to shift herself - something unheard of in the initial days here in rehab. She also seems to be progressing where feeling and sensation are concerned, in that she is reacting to touch stimulus in different areas and has begun voluntary bladder and bowel movements. There even have been instances where she has wiggled the toes on her left foot for us on command without stimulation. Small movements, but very big milestones indeed.

Today was an especially fun day for Claire as she had a group of girls from a local church come by to pay her a visit and have a girl party (see the picture above). The girls showed up around 7 and painted Claire's fingernails, colored pictures with Claire and even sang some Justin Bieber Christmas songs. Claire was elated to have them visit and soaked in all the attention. One of the girls even brought Claire a gift - a necklace & pendant with the words "blessed" stamped into it.

Needless to say, Claire was very happy.

She also does seem to be managing her pain very well. We are off the heavy pain meds and have moved to doses of ibuprofen instead. This way we can dull the pain but not knock her on her tail when she should be awake and working on her PT.

So far so good. Thanks again for keeping up with her progress & for all the messages in her guest book!

Post-Christmas News

2011-12-26T16:09:00.000-08:00

It was an uneventful Christmas, as far as a stay in the hospital can be, which is a good thing. Uncle Bob and Aunt Lori joined us for the day and we all had our Christmas presents to open in Claire's room here at the hospital.
Claire seems to be doing well. She still can't move her legs nor does she seem to feel any sensation when we touch them, but there have been moments where -during a needle prick to draw blood or putting a cold or hot washcloth against her skin- she seems to acknowledge the sensation of pain or temperature. Certainly more than we were expecting.

Karlee spent the last night with her and I am just taking over for the next 24 hour period, but in the transition from Karlee to me staying over Karlee said that she had asked Claire to wiggle her toes and Claire did it, albeit slightly. Karlee said to make sure it wasn't a fluke she asked Claire to do it again, which she did. Then Karlee had her do it for a nurse so there would be a witness to it all, and Claire wiggled her toes again.
So, it's progress once again. Good things.

Karlee also said they changed her surgery dressing for the first time today and she got to see the incision site. Karlee said it looked very clean and very well done, so KUDOS to the doctors and surgeons who worked on her. According to Karlee they did a great job (and Karlee knows a thing or two about stitching).

Claire has started some very minimal Physical Therapy, mostly just getting out of bed into a wheel chair and doing some cognitive and balance testing. All of the major moving around Claire has to do really wipes her out. I showed up today to trade out with Karlee but when I arrived Claire was in her wheel chair, so we all (Me, Karlee, Jacob, Claire & Uncle Bob) went to the cafeteria and had lunch together.

After we returned Claire FINALLY had a bowel movement (pretty topic, I know - but a BIG DEAL I assure you). It had been over a week since she had her last one, before the accident.

Right now she is sleeping and the nurse just came in and took her vitals.

Making Progress

2011-12-23T23:12:00.000-08:00

Well, it took some time to get the site set up and all put together, so this update will seem pretty fast and furious.
We're 6 days post accident and Claire has moved from ICU (there for four days) to a regular room (currently in the second full day here). The progress Claire has shown has been phenomenal.

In ICU the first day after her surgery she was essentially in a drug induced rest, sleeping throughout the day and allowing her body to do all the hard work of recovering from what she had just been through. Karlee and I began the process of switching nights at the hospital with her.

Her second day in ICU she was in and out of consciousness and very tolerable of all of the testing and poking and prodding that needed to be done. She began that day showing us just how tough a little worker she is when she told me two things; "I want water" and "I want to sit up." At this point we could certainly oblige, at least partly, with both requests which made her happy - as did all the pain medication. :) This night was the first night that I stayed at her bedside, awake every hour, watching her, rubbing her legs and feet and talking with her through all of the nurses visits. My touches on her legs and feet created not a single stir or reaction which was unfortunately the exact reaction we were expecting. :(

Days three and four she proved herself enough to the doctors in the ICU that she was able to be transferred out of ICU on day 5 and into a normal hospital room. Multiple times during her stay in ICU she would use her arms and try to roll herself over, sit up, or even pull herself out of bed. Very impressive, considering only days prior she was so badly injured. She also started herself back on solid foods during these days. The really sad part during these days was to see her frustration start to come out as she realized that there was something wrong with her legs. However, her neurosurgeon from the Sunday morning surgery did stop by on day three to see how she was doing. He walked around the foot of the bed and as he did he tickled her left foot, which jerked and flexed to his touch. My mouth just dropped open and I pointed to her foot. Before I could say a word though, the doctor told us that the movement we saw was reflexive and involuntary and not to make too much out of it because of that. Inside, Karlee and I could only see the good in it and hold on to that glimmer of hope.

Days 5 and 6 were spent in the normal hospital room, still with multiple wakings and pokings and proddings and Claire's continued realization and frustration that her legs were not moving at her request. Still, we continued to massage and flex and rub her feet and legs and continued to get those "reflex" responses to our touch. Karlee and I would try to test Claire to see if she knew which foot we were touching, but it never seemed that she could get the right answer, so it appears that the "feeling" isn't transmitting all the way to her brain but is at least making it into her legs and allowing them to flex and move. The rehab doctors also visited and had Claire sit up at the edge of her bed with her legs hanging down and asked her to move them, which she couldn't - no matter how hard she tried. She got really upset and told them that her legs were "stuck."
On day six she finally got to get out of bed and into a wheel chair. A change from laying down all the time to the wheelchair certainly made her happy, but we could tell that all the moving around hurt. She was brought back to her bed and was seriously wiped out. Just exhausted from it all. It was this day that we found that we would be moved once again to another room, but this time it is in the rehabilitation center at PCH. We were moved to the room later in the day on the 23rd and that is where you currently find me typing this message.
Rehab.. It's going to be tough for her.. LOTS of hard work.. But, Claire absolutely HATES that she cannot make her legs move and this little girl is so determined that Karlee and I believe that if anybody can rehab from this injury, it's Claire..

More to come as the journey progresses.