Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Saturday, June 26, 2010

The girls are away at camp

Last Sunday, we took the girls to camp. They are at Camp Millenium - a camp for children affected by childhood cancer. This is the first year that Sarah has been eligible (old enough). This is the first camp that they have gotten to go to without Mommy & Daddy. They were excited about that. The camp is fully staffed with doctors, nurses and many camp counselors. They are able to make sure that the girls get their medications and are kept safe.

Camp is about 3 and a half hours away from home. We had to get up early and head out last Sunday to get them there in time. After we went through the registration process (which took quite a bit of time), we got them into their cabin and headed for lunch. They both latched onto one of their counselors and had to sit next to the counselor for lunch. When lunch was done, they were saying to us (Mom, Dad & Grandma M) "you go now". Kind of bittersweet. On the one hand, we want them to be independent. On the other hand, we want to be missed.

We have sent them letters and received one from them. There wasn't much to the picture Sarah sent home. We'll have to get her to tell us what it was about. I am sure they will have lots of stories to tell! They were talking about pony rides, tea parties, swimming, ropes courses, camp fires, and lots of other activities. I am sure they were kept busy from early until late. We haven't gotten any phone calls from camp, so I'm assuming that they are doing ok. We miss them. It has been much more quiet around home.

Tomorrow (Sunday) morning, Daddy, Genia and Chance (our friends from Alaska) will get up early and head down to get them. It was a hard trip for Mommy last weekend and not as important to Mommy to be there when they get picked up as it was to be there when they were taken to camp. Grandma M will stay with Mommy, so she will have help at home.


Thursday, June 10, 2010

Lack of Postings

We are sorry for the lack of postings recently. Things have gotten pretty hectic and while daddy seems to find a moment here and there to enter short quips on facebook from his phone, actually getting to the blog for updates seems more difficult to do.

Realizing that many of you may not be totally up to speed we apologize for throwing you in "in the middle" of things but are going to do so by reposting here just one of the things that daddy just posted on FB. Basically mommy continues to loose abilities, is completely wheelchair bound and cannot even stand to do transfers from one chair/bed/toilet to something else anymore. Will try to get be better about posting details here but for now I'll put this up and try and get back to work:

I guess it is just my week (month/year???) to be frustrated.

Last week we started with Providence Home Health for physical and occupational therapies in the home for Frances. So far I am underimpressed. Incompetence comes to mind. Not necessarily professional incompetence but at least organizational incompentence.

The relationship with them started with a phone call from them one afternoon. "Hello, this is Providence Home Health calling to tell you that a therapist will be at your house some time tomorrow." No, not any questions as to whether tomorrow would be good, no request to set an appointment, just a dictate. As if that was not bad enough "tomorrow" came and went with no calls whatsoever. Then the next day a physical therapist called and came out. No apologies for a missed day, no explanation as to why "someone else" would have told us that, not much of anything. She was pretty helpful once she was here except that she would not help at all with bathroom items as "that is the occupational therapists area of expertise..."

Then we hear nothing until yesterday morning when the same PT calls and says "I see the occupational therapist is coming to you tomorrow." Hmm, we don't know anything about that - again, you'd think that someone would be kind enough to call and ask if we are even available? We talked with the PT about what we needed (including the bathroom help) and specifically mentioned that we have been using the lift for the last couple of days and could really use some help with that. She said absolutely the OT would help with that.
This morning the OT shows up and spends 45 minutes plus sitting at the table with Frances showing her things that "would help" in a catalog. When asked where/how to obtain these things her answer was always the same - "google it" or look at the website for this catalog we were looking at as "they have many great ideas there."

Finally she gets around to asking to see the bedroom and bathroom and says "that looks good, I have to go now..." When I asked about showing us the lift and how to use it she says that is the PT's job. When told the PT said it was her (the OT's) job she said "Well I guess I can show you as I learned it from watching nurses do it over the last 12 years." She proceeded to basically show us "in the air" how the thing works. I explained that I know the principals but really need to do it on Frances so we can see how to put the principals in to practice. (Ex. It is easy to say " you tuck this around their back, under their butt and loop around their legs" but very difficult to do it with an immobile person in a wheelchair.) She said "I'm sorry, I don't have time to actually show you on Frances, I need to get to my next appointment."

She said she could maybe come tomorrow and show us. I suggested that maybe first she and the PT actually talk to each other about who is going to do what and then, when they get on the same page one of them give us a call. Out the door she went. And here I am feeling like we just about wasted an entire appointment with them. They'll get paid by insurance, and then paid for another trip to do the things we wanted done in the first place - but who's going to pay for our wasted time???