Thursday, December 31, 2009
First things first. (For those who worry...) The PET scan was clear for any further cancer. Yea! If it weren't for this cancer I would be in great health. My lab work has all been good. I truly expected that this fall I would be diagnosed with diabetes--for no good reason other than a very strong family history. But my blood sugar was in the 80's--I can still eat Christmas candy.
Oh, at the doctor visit the other day I made a smart remark about not yet losing my hair. (I thought it was a good thing...) They do not. They want me to lose my hair and from the doc's scribbles I think they might ratchet it up a notch with the next treatment. They are looking for reactions and signs that the chemo drugs are doing their job.
But enough medical talk.
On Christmas morning after opening our presents Mom and Rebecca were busy scurrying around the kitchen preparing dinner. I had been banned from the kitchen but finally was allowed to put away a few dishes. The guys took off and when I asked Mom she said they had to pick up her Christmas present and she wasn't supposed to know anything about it. I know what you're thinking...how did she know what they were doing if she didn't know? But the flurry of activity kept me from asking more. Until...the garage door opened and in walked...my sister. Yep, all the way from North Carolina. My brother (who we were expecting and who arrived later in the day) had schemed and planned a family Christmas together. What a wonderful surprise it was!
For the next several days we laughed and ate and laughed some more. There were hugs and reminiscing. And yes, even a few tears as they offered to share their strength with us during the upcoming challenges.
So here we go, into the new year, already one-fourth done with this chemo. People ask me if I couldn't have waited to start. We couldn't come up with good enough reasons not to. The new year may be ushered in quietly at our house but we are looking forward to it continuing to improve and by next Christmas all this hoopla will be but a small memory.
Wishing you a Happy New Year filled with opportunities to share love with family and friends!
Wednesday, December 16, 2009
Following this minor surgery we're off for a PET and heart scan. These are tests that I am familiar with from my years at the hospital in the nuclear medicine department. I shall endeavor to be a good patient and not whine about having to lie still. Both tests are done as baseline. The PET (positron emission tomography) scan is looking for any additional tumor cells that might have slipped out prior to surgery. The heart scan (called a MUGA for multi-gated acquisition) is done to look at the strength of my heart and make sure I am able to tolerate any damage done from the chemo drugs.
During our tour of the chemo lab we ran into a nurse who grew up best friends with one of Bob's nieces. It's a small world... and it will be nice having someone familiar around during the upcoming weeks.
As it stands today, this phase will take four months. There are three different medicines given at different stages every other week. The first two drugs are apparently guaranteed to make my hair fall out. My friend who is a five year survivor wrote me that without having to fix her hair she was finally able to beat her husband getting ready in the mornings.
The doctor and staff continue to reassure me that treatments are better managed than in years past still there is no doubt that these upcoming treatments will be wearing. But I've discovered (as I always knew) that we have a very strong support system in place through family and friends. I am reminded daily that there are a lot of people praying for us and giving us strength as we move forward. Some have asked how much Matthew realizes. I can't say for sure but Sunday the pastor mentioned my name during closing prayers. Matthew reached over, patted my hand, and kissed my cheek. As always, he seems to see all and understand much more than we think.
So Friday afternoon I expect to be able to put a big check mark on my calendar. And phase two will be underway.
Monday, December 14, 2009
"Ford stands for Fix Or Repair Daily..." and "Oh, you'll have to push your Chevy alright since it won't run..."
I think before Bob and I got married he was even quizzed to find out whether he was a Ford or Chevy man. (Luckily for me he drove only Chevrolet.)
The other day we noticed there were only Chevrolets in the drive. Those big Chevy trucks looked like Big Brother's to Rebecca's Cobalt. Then Rebecca moved her car to the garage and Bob's Ford work truck was flanked by the Silverado's. They appeared to be body guards for the Ford.
I'll leave you with one parting thought: What did the Chevy say to the Ford?
"Would you like a ride home?"
Saturday, November 28, 2009
This morning Bob was helping me change the dressing for my drain. I was in a particularly whiny mood and complaining how I just wasn't feeling very well both yesterday afternoon and today. "You know," he reminded me as he anchored the tubing in a more comfortable position, "It hasn't been a week yet since your surgery." I am thankful for a husband who is able to keep the big picture in front of me.
Hmmm. He's right...as usual. So with that in mind I lie down for a nap and get up feeling much better. One of my friends wrote me the other day that having two surgeries so close together would be physically draining. "But," she wrote, "Do it anyway." So I have and now hopefully am done with surgery. December will be the beginning of my recovery. I am thankful for friends who remind me to do what's best and face these challenges with optimism.
Our Thanksgiving meal this year was pretty different. I spent most of the day on the couch and each time I would think to ask if this or that was done or made I was reminded to relax and not worry. The rest of the family had things well in hand. And dinner was delicious without my intervening. I am very thankful for a caring family who are right here to lock arms and go through this with me.
Over the past month I have been given plenty of opportunities to let others be in charge. It's one of those simple life lessons that you see posted as bumper stickers... you know, like Let go and let God. Let someone else handle things when you aren't up for it. One of many lessons I am continually challenged to learn the hard way. I am always thankful for optimistic people who remind me of the power of God. (Trust in the Lord with all your heart; and lean not to your own understanding. Proverbs 3:5)
As we celebrated this year we reminded what a great country we are in. Our health insurance (for which yes, we do pay a significant amount) has allowed me to be seen by specialists quickly, have new technology testing and less invasive surgeries in a very short amount of time. It appears that my doctors and I will decide the best course of treatment and we won't have to waste time appealing to a third party. I am very thankful for these healers and the positive outlook they bring.
Thanksgiving is a great chance to think about our many blessings. Often we take for granted our family and friends. This month we have been fortunate to be reminded of our many loved ones as offers of prayers and assistance come flowing in. We are indeed thankful for everyone. I hope you too are as lucky.
Sunday, November 22, 2009
I'm reminded of sledding. Growing up in Alaska we had plenty of opportunities hike to the top of a hill and jump on our sled zooming down to the bottom. Some kids would choose to go at break neck speed but I was never so adventuresome and drug my boots as brakes. Now when the kids go sledding in Strawberry we use inner tubes which work well on the soft snow but there is no steering. Have you been on an inner tube and found yourself looking up the hill, speeding down backwards with very little control? That's what this month has been like. I can see clearly where I've been but I'm having trouble seeing what's upcoming. I know there are dangerous trees if I don't stay on the path.
The pathology report came back last week. It was kind of a good news-bad news report. The entire tumor was removed but the final pathology report showed that there were tumor cells in one of the lymph nodes tested. Because of this both the radiation oncologist and the surgeon feel that I should have the rest of the lymph nodes in the area removed. Fortunately, these guys don't mess around and this second surgery is scheduled for Monday, 11/22. Based on everything we have been told this surgery should be shorter but the recovery might be a bit slower because I'm just barely recovered from the first one.
Now you see why I feel like I'm zooming down the hill backwards. I'm not in control of things and this puts me in a position I'm not used to. I know: Let go and Let God... I'm trying.
In any case, I have had the best post op care possible. I am scolded by my parents when I do too much and they have been super busy trying to anticipate anything I might think I should do... The kids both worry too much and are being especially helpful. Bob has on his super stress hat which means that the garage is organized and this afternoon he is already putting up the Christmas tree.
We have also been blessed with meals and many offers of assistance. And you should see the cards, flowers, and other gifts... You can see one example here. It's called a butterfinger tree! For whenever I need one of those pick-me-ups... Yum.
So we head into Thanksgiving week with a new perspective on life. We are especially thankful this year for our family and friends. The doctors have been very optimistic that because I am "young" the treatments will be effective and I'll be good for many more years.
Thursday, November 12, 2009
Shortly after their return I could feel the energy leaving me and when my friend stopped by I was barely able to sit up. Mom noticed I was puny and I was relegated to the couch while they visited. It didn't take long for me to fall asleep. Later in the afternoon I admitted my folly which I'm not sure was a wise move...now I'm like the president with an agent at my side every move.
This morning, after my best night's sleep in a long time I thought, "Today's the day." Wrong. Another friend stopped by and again it didn't take long before I had to go lie down. But I wanted to get out of the house so Mom, Matthew and I went to the store. Those of you who know Matthew will get a real kick out of this--in the store he put his hands on my shoulders and tracked my every move. Halfway through the store I decided that we'd better quit or I'd be in an embarrassing heap there in the aisle. Sheesh. I hate admitting when my mom is right.
Other than that I am good. I love this super glue stitch stuff. I have no band-aids, butterflies or stitches...just purple glue. It is very cool. Surgery went as expected and recovery was just loads of fun. I'm looking forward to the visiting the surgeon next week and then getting started with the oncologist. More important, I have been on the receiving end of a huge number of cards, emails, phone calls and visits... Family and friends have been doing a great job of reminding me how blessed I am. I also especially enjoy hearing from cancer survivors. The strength and faith of people continues to amaze me. I hope to follow your shoes. But for now, (and don't tell my mom... I'm going to lie down and maybe take a nap...)
Sunday, November 8, 2009
- Type of biopsy--core with needle aspiration under guided ultrasound done in the surgeon's office...kind of a cool tool that looks similar to a meat thermometer and has a tiny needle that comes out at the end then shoots CO2 to freeze the tissue before it grabs a piece. The doctor used a local anesthetic so it was pain free.
- Cancer type--biopsy showed ductal and lobular mix. The doctor said if there is any ductal involvement it is called such. It is grade 1 which means a less aggressive form (this is good.)
- Tumor size--xray called it 1.5cm. Doctor said about the size of a quarter while the MRI report said it was 3.3 cm. The actual measurement comes from pathology after the tumor has been removed and was 2.1 cm.
- Staging--This is whether the tumor has spread beyond it's initial borders. The doctor ordered the MRI pre-surgery as part of this work up. the MRI was normal. Staging is done from results of the sentinel lymph node check and the additional pathology tests following surgery.
- Initial Post-Op results--There was one positive lymph node out of five tested. Both the surgeon and radiation oncologist feel it will be best to remove all the lymph glands in the area (surgery is scheduled for 11/23).
- Surgery--As I wrote earlier, the first surgery was without complications. The hospital staff were excellent and caring. Their compassion helped everything go well. Post Op I was surprised at how long it took for my body to really wake up. For some reason I figured if I was only out for 3 hours I should be well awake in 3 hours...not so.
Saturday, November 7, 2009
There has been a mammogram request floating around the house since last February but because it wasn't a priority I didn't get it done. Then, the first week of October I noticed a lump in my breast. Luckily, I had the order and didn't have to waste time seeing the doctor but was able to get in for xrays the next day. Films turned out fine (technically anyway) and I went home thinking it was my imagination.
When the office called me the next day though, I was pretty sure things weren't okay. They needed me to come back in for more xrays and an ultrasound. Years ago I actually worked in the xray department and did mammograms so when I saw the film I was pretty sure what I was seeing... There was a noticeable mass that was obvious when comparing one side to the other. I was fortunate again, and able to see my doctor right away, who first chewed me out for procrastinating. "Priorities," I said, full of excuses. I am pretty sure my doc was thinking, "BS" but she didn't say it. Instead she comforted me and recommended her favorite surgeon for a biopsy.
After what was a very long week and a half I saw the surgeon. She is at a center where they only deal in breast surgeries. I expected to see the doc and then return at a later date for more tests. But no, she offered to do the biopsy that very day. Since the mass showed up on the ultrasound they were able to easily snag some tissue for the biopsy. Honestly, it did not hurt and the procedure was interesting to watch on the ultrasound. I can't say Bob was all that thrilled but he's tough and I told him that if he passed out they would just push him aside until they were done.
When the biopsy was finished the surgeon made an appointment for my follow up visit with a promise from the surgeon that she would call with results. It was a time to be on pins and needles. It was a time spent on pins and needles. Was it fibrous tissue or a malignancy? Was it a complex cyst (not likely from the US) or or just a thickening? I tried to stay away from too much research but you know me... and things looked a little better when I read the statistics on stellate mass being benign were 75%.
Unfortunately, this hope was dashed when the doctor called, "Is now a good time to talk?" she asked. "I have your results and it's what we thought it might be..." At this point I know she told me many important things but my brain had stopped working... CANCER was all I heard.
I cannot tell you how many things flew through my mind that afternoon. Facing your mortality is a scary idea. Did I wait too long? Who would take care of Matthew? Would I see my daughter graduate from college? Become a doctor? Marry? What about my parents? They're getting older...they need me. What about my husband? Can he figure out my crazy accounting system or even find the passwords to get into the checking account??? Then came the realization that I had to now tell people and how do I tell my folks? My sister? My baby brother?
The next week was a blur. We decided to track my parents down where they were gold prospecting in the desert and tell them in person which was a smart move because my brother called them the next day to make sure they had gotten word. I was hesitant to write a non-personal email but ended up doing so because it was less stressful to me and I could more easily catch family and friends. Not only did offers of help and especially prayers start flowing in but also personal stories from friends who were survivors. Their assurances continue to give me strength. The rapid response of email has made this time pass much more quickly.
Last week I had more tests and everything so far looks like the tumor is confined to the one area. I am scheduled for surgery Monday.
Times have really changed from when I was working in the hospital. Surgery will be done as an out-patient and I'll be home in the afternoon. The tumor and surrounding tissue will be removed and they'll inject some radioactive dye so that the doctor can trace back to the lymph nodes that feed the area. She will remove only those nodes and if they do not show signs of spread can stop there. After I am healed from surgery I'll visit the oncologist who will do radiation therapy and most likely chemo.
Whether to write this publicly has been a challenging choice. Can I be an inspiration? More likely I'm a poster child of what not to do... Will sharing these challenges help someone else? Can I stay positive? Since you're reading this you can see my decision. I promise not to go into gory details, though I will tell you the doc said she is using super glue to hold me together...
So, what have I learned? My parents asked me this the other day. (They are so concerned they have already been here two weeks...which is good as Matthew loves having Grandpa around and I have been able to pawn off Rebecca's school related questions --like "Can you read this report and tell me the negative and positive contrasts?" to Grandma.) But back to my question... I have been reminded that especially when one is a caregiver it's important not to procrastinate...even though it's easy and I have plenty of excuses. The caregiver's health must also be a priority. And, yes, most importantly, get your mammogram when your doctor tells you to.
Wednesday, October 14, 2009
Generally, I find that I wear many hats. Most days housekeeping is top on my list. I am the only person in my family who can sort clothes for the washer and no one else knows that you have to lift the lid when you clean the toilet... But those are stories for another day. Today I am ... Chief Toenail Clipper.
Now I know that unless you have small children or care for someone who can't quite reach their feet you only have to manage your own personal hygiene. But having a special needs son puts me in charge of him...and what about those pets?
Matthew hates to have his nails trimmed. First, he sticks his foot up still socked. Then I get his socks off and as soon as I touch his toes he starts complaining like he's being stabbed. "Ow! Ow!" I bet the neighbors can hear him. Thank goodness there are only five toes. When I tell him to give me the other foot he fakes it and sticks the already trimmed toes back at me. "Ha, ha, ha," he thinks I won't notice.
So, son is set. "Whew, torture finished for another day." Now it's time for the dog. I never noticed her toenails before we got wood floors. Now every time she walks through the house we hear her clicking. Sadie thinks she is on guard all night so she goes from room to room checking on everyone. Click, click, click. Click, click, click. Every hour...
She is worse than Matthew and starts quivering when I even get the clippers out. I'm always scared of cutting to the quick and really hurting her so I picked up one of those "As Seen on TV" trimmers. It is a very cool tool with a little grinder. I'm sure you've seen it--the dogs are actually smiling as they get their pedicure. The "As Seen on TV" trimmer works well but it's battery powered and I always run out of batteries. I was complaining about this to my mom who told me that one of the boys uses his little dremel tool (a little high speed spinning tool with a neat variety of attachments including a sander). I knew Bob had one so the other day I tried it out. Bzzz, it worked great and then vroop-- I caught her tail hair and wound it tight in a giant wad. As you can imagine, Sadie didn't get too close to me for a few days. I'm back to using the battery powered tool but she still doesn't smile like on the commercials.
Last on my list for today are the cats. They are wise to my ways and it's tricky just catching them. Years ago we got tired of them scratching the furniture when we would leave town (cat claws and leather do not mix). So we decided to have them declawed. Yes, I know it's inhumane and hard on the kitties but compared to the cost of a new couch??? I made the appointment and we borrowed my folk's dog carrier. Then came the fun of rounding up the cats. Back then Bob still thought cats would act like dogs and come when called but of course, ours saw the carriers and went into hiding. We tracked down the smaller of the two cats but when we tried to put her in the carrier she turned spread eagle with a three foot wing span and there was no way she could be stuffed into the hole. Fortunately, the dog carrier was big enough for a hound so we managed to get her inside. The poor larger cat was then stuffed in the smaller carrier with barely enough room to turn around. But for good cause...right? Bob planned to drop them off on his way to work so I was very surprised when an hour later he showed back up--and even more surprised that he had cats in tow. The vet's office had neglected to ask their weight. Spunky, the fiesty one, weighed in at 12 lbs and they wouldn't declaw a cat over 10 lbs because it was too hard on the cat. Salem was a whopping 20 lbs! There was no way he would ever thin down enough. So the cats, like everyone else get their nails trimmed by me. We have to be sneaky and have everything in place. And we have to work fast...cat's might have a lot of patience when watching birds but not when being held.
Finally, the job is done. There is a tremendous benefit to this job... No One will come near me the rest of the day.
Tuesday, October 6, 2009
Luckily, time dims the memory and the first of September I contacted Matthew's case worker again. Since he had offered that I could provide habilitation* services I decided to take him up on the offer.
Why do I torture myself like this? I know you are asking and there is only one reason. If I die tomorrow someone will need to be here and care for Matthew. Bob can't drop everything and stop working. I know without hesitation that my parents would step in and do what is needed and yet, it would not be without a major change in lifestyle for all. So I continue to pursue getting these services for Matthew hoping that I can save someone else the grief.
So, following my phone call, the case worker comes for a visit to put the services into action. I am smart this time and set up the appointment when Bob can attend. It's a good thing because he reins me in from complaining too much. The young case worker is pleasant enough. He apologizes that they denied coverage for the attendant care and I explain again that I'd like to get going with the habilitation services. "Let me make some phone calls and we'll get this started," he says with a grand gesture. (Bob tells me later that this guy reminds him of a used car salesman.)
Within two days I do receive a phone call from a gal who says, "There seems to be some question...yes, of course, you are ready for habilitation. Everything is in order."
Well, I am pretty humbled and acknowledged that the case manager did his job. Until I send in a time sheet. Of course, another agency takes care of this part and sure enough I get a phone call. "We don't have any authorization for these hours and we need a pay rate before we can process the time sheet." I should have known.
A few phone calls and several days later I discover that there is one more agent who needs to make an assessment. After questioning the need for this "again" she looks at our file to find it's been over a year since starting. This person is very gracious and apologetic. She manages to calm my frustration and we spend more than an hour going over Matthew's needs once again. She finishes up and assures me that as soon as the central office receives this information they will be able to pay me to provide Habilitation for Matthew...oh wait, I am not certified for Habilitation; I am only certified for Attendant Care. I'll need to take a class for the Habilitation... it's deja vu all over again.
*FYI: People with special needs can qualify for services that are covered by each state. Services, number of hours allocated, and rate of pay depend on needs of the individual. Habilitation is working with the person to "learn" a particular skill. For example: Me brushing Matthew's teeth would qualify under Attendant Care. Teaching Matthew how to brush and offering assistance and guidance would be Habilitation. Fixing lunch is also Attendant Care while hand over hand use to spread peanut butter on a slice of bread is Habilitation. Also included in Matthew's services is Respite which is providing someone to make sure the individual is safe while allowing the caregiver a break.
Tuesday, September 29, 2009
The other day I was visiting a friend and her adult daughter was cleaning the carpets. She had filled the fresh water tank in the sink and then somehow lost the plastic screw top. When I arrived she had already pulled out the refrigerator and stove searching for the now very elusive cap. My friend suggested maybe the cat had spotted it and swatted it down the hall. The whole stay this poor girl spent looking for the lost. It's frustrating.
Everyone has been there. We have a large shade canopy that comes apart in a hundred pieces. One day the canopy was up on the lawn (but not staked) when a sudden gust of wind came. The canopy was blown into the air and landed fully on top our giant mesquite tree in the front yard. Amazingly, only one of the connectors broke. So we packed it up, kit and kaboodle and finally got around to ordering a replacement connector. The new piece arrived and floated around the kitchen along with the broken one. Until the day before we needed to put it up. Then it was no where to be found. Don't you hate when that happens? We searched and searched. Voices were rising almost to the point of accusations, but no one quite willing to blame the other. Well, as it turned out the cat, in one of her fast paced escapes across the island must have knocked the connector into the trash.
Our best "lost item" story came during a visit to my folks. The recliner chair was wiggling so the guys decided to fix it using the electric drill. No problem, tightened all the screws and the chair was good as new. But where was the drill chuck? It was there when they started, after all it's needed to change out the bits. They searched and they searched. They went out to the shop and searched. They tore the chair back apart. They looked in their coat pockets--even the ones they weren't wearing. It was well lost. And it didn't show up. Time passed. Finally Grandpa broke down and bought a replacement chuck last year as he again needed to use his drill. This summer he walked along the front porch and there, to his great surprise, sitting in the flower pot was his chuck. The lost was found.
Last week I found something very unique. A pair of glasses. Yes, several in this house wear glasses but I've not seen them before. I tried them on--they are almost strong enough for my bad eyes so the person who lost them likely misses them. Can't think of anyone to whom they might belong. If you recognize them, or if you need a pair and are myopic let me know and I'll match up the found with the lost.
Thursday, September 24, 2009
Of course we were outshone by brother Kelly's teen boys who threw those bundles of shingles over their shoulders and climbed up and down the slippery roof as though walking across the sidewalk. It was truly wonderful to have these young, strong helpers.
When I wrote my plaintive plea for help last month I was rewarded by a reply from a friend who offered, not only to come and help, but shared that he actually had experience. When Bob and Kelly ran into a challenge, like cutting around the fireplace or dormer, Rich was there to help. Rich also brought his wife Chris along and I promised she could spend the day reading or relaxing in the pines but she jumped in and helped the cooks along with watching Kelly's young grandson.
There was a strong threat of rain for the weekend so when dawn came and it was dry we all jumped up to get started. Kelly had mailed down not one but two nail guns so the work went twice as fast. The day was cool and perfect. Kelly and the boys had flown down from Anchorage so they especially were thankful for the lower temps.
After lunch we clambered back up and made great progress until the rain started. Wow, do those shingles get slippery. It was great timing though as everyone was ready for a break. We were three-fourths done! Some of us (well, me in particular) thought that was more than good enough for the day but after the rain stopped the boys got their second wind and were back at it. It was absolutely amazing to finish this job in one day! It would have never happened without great help from family and friends!
Monday, September 14, 2009
A few years ago we noticed several dead branches and the tree was leaking giant globs of sap. It didn't look good. I visited our local nursery and talked to their arborist. He told me that apricot trees don't live more than 10-15 years in our harsh desert and recommended not spending any money trying to fix the tree. "Take it out. Time to replace it," he advised.
Not being ones to give up so easily we trimmed out the dead wood, fed it some sulfur and stuff and said, "Let's see how it does." That was more than three years ago.
There are many reasons I am opposed to the current Health Care Reform legislation. Outcome based health care is one. (You can look at House Bill 3200; Section 1162; subsection (ii) Establishment of Outcome Based Measures pages 335-339.) It is part of the payment section. In short, this subsection says that the government will mandate the establishment of "outcome based measures." I can't help but look at this and believe that this type of plan will move us from a health care doctor/patient relationship (with limitations by my chosen insurance plan) into a doctor/patient/advisor relationship. It appears that these mandates will add statisticians to the table.
I don't look at these advisor's as a "death panel", well, at least not in the sense that the patient will find himself standing in a circular room surrounded by black hooded robed "specialists" who can give life a thumbs up or down. But it does sound like the advisors will be able to overstep my doctor as to whether a test or procedure or even surgery would be covered based an individual's health, age or the "predicted" prognosis. What will be the criteria used to make these decisions? Must one be a "productive member of society"--and how do we decide what that means? You might have read elsewhere about seniors who are concerned that they will be denied services because they have already outlived their statistical life. These concerns become particularly worrisome if funds become limited or the plan overpopulated--did you not ever watch Logan's Run???
This change worries me greatly and here's my real life example. Our son, Matthew, was diagnosed years ago as having Cerebral Palsy. He also fits the criteria for Autism. Perhaps now that Matthew is 26 I could make an argument that he doesn't really have CP or that it is such a mild case that the statistics of mortality wouldn't fit him. You'd probably agree watching Matthew as he appears quite healthy. But I've been told for years, "Once Diagnosed; Always Diagnosed." In other words once you have been diagnosed by an "expert" you have this disease until you can find another "expert" to retract it.
Okay, let's take CP out of the picture and just look at Autism. You'll see many places where it state that people with Autism are expected to have normal lifespan. Yet there are studies (lifeexpectancy.com) that show autistic people have a reduced life expectancy. What if Matthew gets cancer? Would he be treated as aggressively if someone gives him a higher mortality rate? Would he be denied therapy because he's not a productive member of society? And who gets to make those decisions?
The other day I read about a young girl born with Down's Syndrome in the UK. Like a whole lot of "normal" infants she had some complications. Unfortunately, during treatment she was given too much antibiotics and down the road her kidneys were in failure. At that point she was a good candidate for a transplant as she was in otherwise good health. But the advisors with the National Health Service in England said that she was not eligible because she would not be able to care for herself and take the medications as needed. It is a tragic story that I have trouble even retelling it because I can't help but think of children I know with Down's or other special needs.
Looking at the proposed health care reform plans it's obvious we must be a voice for those, like Matthew, who can't talk. If his doctor, my husband and I agree on a treatment plan for any given ailment we do not want a government bureaucrat to come in with a "thumbs up" or "thumbs down." Like my apricot tree's continue growth, statistics don't always hold out.
It's something to think about as we sit under its shade and watch the birds in their nest.
Friday, September 11, 2009
Oh My God. . . our hearts stopped. Did the clock? It seemed that time paused those initial moments as we watched our country attacked. We all stared, unbelieving, at the television. How could this happen? Who could do this to us? No one moved from the TV. Everything was forgotten as we shared the horror with our countrymen. How many innocent people were on the airplanes? How many in the buildings?
And then. . . could it be worse? News of the plane crashing into the Pentagon. News started coming in about another plane down. Most of the footage centered on the towers as access to the capitol was closed. We watched, gasping, as people, trapped on floors above the carnage, jumped to certain death. And. . . then, it was worse as both towers collapsed entombing thousands forever.
In days following we learned about the heroism of the people on Flight 93 and wondered, "Could we be as brave?"
The terror we felt can in no way be measured against those living in New York and DC or of the families who lost their loved ones. We were bystanders. Yet, we were united together as we cried, our hearts aching for those lost on that fateful day.
Wednesday, September 9, 2009
Got all kinds of things to write about but first things first.
Matthew was looking for something to eat today when he spotted the Kinnikinnick pizza crusts in the freezer. I didn't have all the ingredients for a pizza, nor did I want to heat the oven so I offered to cook one up with cheese. We cut the 7in square crust in half and placed one half in a pan. Then I piled a liberal amount of shredded cheese and stacked the other half on top. Just like I would a regular grilled cheese except that this "pizza crust" comes with a bit of corn meal on the bottom so I didn't butter it. I pressed the sandwich down by setting a cast iron skillet on top. We cooked it over medium heat and when the cheese just started melting turned it over. The skillet sitting on top seemed to help the sandwich cook evenly. When the cheese was melted and just starting to bubble out we took it out of the pan.
I was surprised that this crust would turn out so moist and made a great sandwich. Best of all, there was no crust. When I picked up these individual size pizza crusts I had planned only on making pizzas. Now, I see there are many more possibilities.
Kinnikinnick products are available at our local Sprouts and Whole Foods stores in Arizona and you can order them online.
Tuesday, September 1, 2009
The "anti-tax day" tea parties have expanded to cover other areas where citizens are concerned including Second Amendment Rights, Health Care Reform, States' Rights and the like. You might remember I attended a town hall meeting last week. We were looking for the "Angry Mob" and the "Organized Protesters" that we had heard about from some of the Democratic leadership. And if you watched John McCain's town hall...well...you saw Matthew and me... Hardly fitting of a mob and especially not very organized.
So when my mom told me about the Tea Party Express traveling from Sacramento to DC I thought this might be my chance to see some of these radicals. We decided to make the drive to Flagstaff. Now this time you might say we were organized, as we planned enough to pick up my mom on the way. But we weren't organized enough to think about taking long sleeved shirts for the cool Flagstaff evening. (Lucky they have stores there...) And we certainly weren't angry (Matthew is never mad when his portable DVD player is working.) Anyway, the event was scheduled to start at 6pm but we thought we should be there early and good thing because the crowd was already gathering when we drove in shortly after 4.
As you might guess Fox news was there following the Tea Party Express, but also "embedded" on the bus and reporting in were reporters from the likes of CNN and NPR. I know you're thinking, "Okay, out with it. Did you see any angry mobs? Did they appear to be professionally organized?" And the answer is pretty simple. I saw lots of ordinary people dressed like me. Some wearing jeans, some wearing Docker's and one guy in a Daniel Boone outfit right down to his boots. I saw several pro Second Amendment people--it was easy to spot the ones with their revolvers strapped to their waist--no surprise as there are a lot of Libertarians in the state. I did not see anyone with an AK-47 or any other big gun for that matter. People carried homemade signs, some pretty funny. Generally there were a lot of flags and red, white and blue.
When the Tea Party Busses arrived the crowd grew. I'm guessing a couple thousand were there. It seemed like a lot. The event was much more than I expected. There were some great singers, some short speeches, assorted politicians and lots of cheering. Kind of like a pep rally. We waved our flag and clapped when they talked about the Constitution and how great the United States of America is. They wrapped up with a tribute to the soldiers and invited all the active duty and veterans to come up front. I was amazed at how long the line was. There was even a soldier from WWII there. Of course everyone teared up when a mom of a fallen Marine was introduced. Freedom isn't free.
The Tea Party Express is travelling across the country for the next two weeks. If you have the opportunity I highly recommend you go. We need to stand up for America. We are still the greatest country in the world.
Oh, and your second question? If you are like Rebecca you might not remember learning about the Gadsden flag that Matthew is holdin and it's history. But I'm not going to go into Ben Franklin's comments. I'll let you read up on it yourself. Don't Tread on Me
PS I haven't figured out how to label pictures so here they are:
1. Is that an angry mob I see? No, it's Matthew and Grandma hours before start time...
2. Matthew and his new friend Griff Jenkins--yes, from Fox news. Ignore the Transformer in Matthew's hand...
3. A couple of hand made posters. Those weren't mass produced...
4. Recently retired Sheriff Joe Richards (Dem) from Coconino County. Plain spoken man, obviously loved by all.
Tuesday, August 25, 2009
Well there we were this morning messing around, checking email and I asked Matthew if he'd like to do something fun... We all have our hero's and one of Matthew's favorites is John McCain. I had gotten an email that Senator McCain would be holding a town hall meeting just down the road in Sun City and thought Matthew might enjoy seeing him.
It was only about three miles away so I figured leaving at 10 for an 11:00 start was plenty soon. But to our surprise we weren't the only ones going to the town hall and waited a good while just to get turned on to the street with the church. We got inside the church only to hear that the main sanctuary was already filled and there was some overflow seating where we could go. I figured since we had come this far we might as well sit there and at least watch some before Matthew got bored. Just as we walked past the main doors a nicely dressed woman peeked out then walked up to me and smiled, "Are you headed for the overflow room?" she asked. When I nodded she took my hand and said, "Come with me." We went inside the sanctuary and she pointed out another woman, "Tell her that I sent you and you can sit up in the choir area in front."
"Really??? Wow..." And off we were to the front of the room. We sat in the second row with all the Republican volunteers and donors.
Only when I sat down did I think about what we were doing. You know Matthew. We always sit in the back of church and at the back of any meeting but here we were up in the front visible to everyone... Then I looked across the room--TV cameras pointed our direction. Yikes.
But there we were and fortunately, Matthew got caught up in all the buzz. Lots of people talking and smiling, enjoying themselves. And when the introductions began he could see Senator McCain just off to the side--right next to us. His American Hero.
I was surprised that Matthew made it through the clapping and standing. I am sure he laughed at the few boos he heard. I don't think he cared a whole lot about the Health Care Reform information that was being shared but he did seem to enjoy listening.
If you watch the video you'll spot us and I know you'll think two things. One, someone should have told me to do a better job brushing my hair (where's my daughter when I need her...) and two watching me rub Matthew's neck and leg (which we always do when he has to sit and pay attention) is quite annoying. I doubt they would have put us in front had the gal realized Matthew was autistic but I am glad that he could sit there and be a pretty good representation of someone with special needs.
Oh, and what did the Senator say??? I'm going to have to go back and watch the video.
Tuesday, August 18, 2009
So we got home, searched out our scaredy cats (who had gone in to hiding the past several days) and then ate our traditional post vacation Mexican Food dinner. And now that it's past 7pm my electricity has kicked into high gear and we are pretending it's cool here.
I'll unpack suitcases and do wash tomorrow. Tonight we are just relaxing and talking about what was most impressive for each this trip. As I expected, Rebecca thinks the Butchart Gardens were the most amazing. And truly it is. We drove up through the countryside on a little two lane road (thanks to the unique mapping our GPS chose) and from this very rural, treed area you find yourself in the middle of Eden. I hope you get to visit here. Bob thought that the best part was our drive up to Mt. Olympus and Hurricane Park. Matthew too, was very happy to see the deer so close up. Bob and the kids had never seen a glacier and to see it through the fog was pretty cool. Matthew and I are still shaky from our hair-raising experiences across the Capilano bridge and up to the top of the Space Needle. I told Bob we were able to say the whole 23rd Psalm on the ride up. The view from both places was indeed spectacular but we are both very glad to be home with our feet firmly planted on the ground.
Thought you'd appreciate these two pictures today. If you have ever spent any time around Bob you know that his cell phone is his umbilical cord and there is always someone calling from work. Here we are on the ferry and he was gabbing on about this, that or the other with one of the guys. He even had service in Canada but when I reminded him he might have to pay $$ for the international fee he quickly turned it off.
And here are the sweet children entertaining themselves... ah, life is good.
Monday, August 17, 2009
The weather was absolutely beautiful here today. It might have reached 80 and there was always a breeze. So we walked from the hotel to Pikes Fish Market. The kids were impressed with all the fish and seafood but especially the show put on by the guys working there. When they toss fish through the air and chant it's pretty amusing. The market area is filled with small shops and a farmer's market. I loved all the cut flowers available at such low prices. We would have bouquets everywhere in the house if I lived here.
Dorcas wanted us to visit another unique place so we drove a short ways to Snoqualmie Falls. The water falls were fun to look at from the top but we decided to be adventurous and hike to the river down below. I can tell you that walking down the trail was not too bad but the hike out... well, let's just say we were all glad for the many shady spots where we could catch our breath. I tried to reach a ripe blackberry in the middle of the thicket thinking it would quench my thirst and instead got caught up in the bush.
Today was a great way to wrap up our trip. We are packing tonight and heading back to hopefully cooler Phoenix tomorrow. Rebecca is looking forward to evaluating the Sea-Tac airport. She thinks it's pretty hard to beat Sky Harbor.
Rebecca's Perspective: Another great day to our trip, I'm so glad we had a Seattlelite show us around! Dorcas was our tour guide to the little known spots near Seattle, as well as the very famous Pike Place Market! She even took us to the very first Starbucks! The place that started it all. How cool. :) Across from the fresh flower and fruit market place, there were assorted bakeries and delicatessens, even a cheese shop where we all tried some curd cheese! Matthew was very excited to see a bakery that had a whole gluten free section, something that is becoming more popular in the Seattle area. After seeing the falls and having a giant lunch, we drove to Kirkland to enjoy a scenic view of Lake Washington. Beautiful weather made the day perfect for such outdoors activities.
I will sorely miss this wonderful weather, but I keep hearing how lucky we were to not run into clouds and rain. I think we're all ready to head home, myself to get ready for school! It's been a great trip readers, keep following! :D
Sunday, August 16, 2009
Rebecca’s Perspective: What a beautiful day in Seattle! Not a cloud in the sky, got the sun in my eyes, and I won’t be surprised if it’s a dream… :-) (for all you Karen Carpenter fans out there.) Today was a lot of traveling; about an hour of which was spent waiting to cross the border back into the US. The line was pretty insane. We thankfully all had our passports so when we got to customs we moved right along. In the midst of our trip back to Seattle, we took a detour to see Whidby Island. It was very scenic; Mom’s got a house picked out for me to buy her (when I manage become a millionaire, I think.) right on the coast of Washington. After we got into town, we ventured on the monorail to the SPACE NEEDLE!!! Oh boy, was that … well, maybe not exciting, but something that sure got your attention. While Mom and Matthew weren’t too willing to walk along the edge, Dad and I did boldly go where I hadn’t gone before. I was pretty nervous out there, but as long as I didn’t have to look down I was okay. Of course the occasional accidental glance had me hanging tight to the wall, though. Tonight we’re staying downtown, and tomorrow we’re looking forward to seeing my mom’s friend Dorcas and walking around Pike’s Place Market as well as some other nearby attractions!
We are back in the good ole US of A. And it’s a good feeling. I knew for sure we were back when we spotted a group of veterans protesting the Health Care Reform program being proposed. I thought it was interesting that they were out maybe there was a Town Hall meeting in the small town we were in.
Today was just perfect weather here! We’ll be miserable when we get back to Phoenix…unless fall has suddenly hit. As Rebecca mentioned we bravely rode to the top of the Space Needle and for Matthew and me once was enough. We thought it was a beautiful view but I had to keep Matthew looking at me on the ride since he was quite nervous. He was funny though when we got down close enough to see the tree branches he kept saying, “Ahhhh. Whew…” I’m telling you we have never tested our bravery so much as this trip.
The sun is just thinking about setting as I write this from our 18th story room so I’ll wrap up. We can’t wait to see the fish being thrown around at the Fish Market tomorrow and I am very much hoping that we can eat lunch at our family’s year old favorite restaurant down on the wharf.
Saturday, August 15, 2009
It was fun to ride the ferry to Vancouver this morning. The kids were entertained by a naturalist who talked about the sea life in the area. Matthew and I saw a seal and Rebecca spotted a dolphin. Look as we might, we didn't see any orcas.
The picture here I was going to label "The Face of Fear" but Rebecca thought it would be better titled "Three Brave Souls". This was taken as we walked across the suspension bridge over the Capilano River north of Vancouver. Truly it was amazingly scary... I think walking across is easily worth several years off time served in Purgatory... Matthew thought it was funny as the bridge swayed until we got past the trees and were out in the open. Then I had to convince him to keep going. We visited here our first time through and only the bridge is the same (if that). This has turned into a major tourist mecca with fees and high dollars at every turn but still, it is a fun and very unique place to visit.
As we came in to the city we visited the Queen Elizabeth Garden. We spotted at least seven wedding parties taking place in this beautiful area. Now Rebecca is torn between having HER wedding at Butchart or the Queen Elizabeth gardens. Thankfully, she has ALOT of time before this is her worry...
Tonight we drove through Chinatown. Because we didn't need a flat, dried duck we didn't make any purchases... This and the rest of the city center area reminds me of San Francisco. Very interesting place.
Rebecca's Perspective: What a beautiful day spent on both Vancouver Island and Vancouver! At about 65 degrees and wind, I felt quite comfortable with just my long sleeves and jeans while other tourists and Canadians were bearing shorts and tank tops! Really, the bridge was not quite as frightening as my mom makes it out to be-- you just have to not look down, not let go of the sides, and pray that the 8 year old boy stops jumping and making the bridge sway more. We also found that the bridge isn't quite as bad when it is crowded with people. We crossed the middle segment alone the first time across, and with no one on the other side, boy did we lean! Balance is key. But the area surrounding and 230 feet below was beautiful and scenic as one might expect. We also saw many weddings take place at the Queen Elizabeth Gardens, a smaller version of Butchart right in the heart of Vancouver! I could just see myself there in a few years on a beautiful summer day, my wedding party surrounding in the lush gardens... though Mom and Dad seem to think this won't take place for another 20 years.
Tomorrow we're off to Seattle, perhaps to Pike Place Market or even the Space Needle! We'll right more soon...
I woke up thinking about some of the differences between our Canadian cousins and us. If you've been up here before you'll probably be able to add to my list.
• Locals often do use "Eh?" at the end of every sentence. Why? I don't know. But they do, eh.
• People seem to be very friendly. Of course, this Bob would know because he has engaged everyone in conversation...well, except of course, the Customs Agent where I warned him that he was to only answer their questions.
• People walk everywhere...we have had to watch out for pedestrians on the road. I know, if you are not from the Phoenix area this might seem a pretty lame observation and yet who walks in Phoenix??? We've decided this is most likely due to the 40+ degree temperature difference. I too would walk more if I didn't break into a sweat just stepping out the front door.
• Here's another possible AZ observation...there seem to be a lot of smokers here. Can't say I know why and it seems to contradict the healthy lifestyle of walking.
• Bring your wallet to Canada. It may be because we are in a tourist area but so far prices, especially for food are quite thinning. Last night we were told about a family restaurant that was really good but discovered on Friday nights they offered a "Frugal Friday" special of half off everything on their menu... you can't imagine how long the line was. We ate at A&W.
• Homeless people are everywhere. And they don't stoop to eating the wild berries along the roads. At least according to the park ranger we talked to.
• 80 means 50. Ah, that metric stuff again. They have signs posted just as you get off the ferry reminding us Americans that 80kph is the same as 50mph. The good thing is that Bob feels like he is driving faster when he sees the 80 or 90 signs.
• Speaking of metric, I think they took away the Imperial gallon here. Now it's all listed in litres. Gas prices also seem to be set as there was no variance within the city. Last night we paid 102.7/l (a hundred and two cents plus 4tenths...what the heck is that?) You can figure out the actual price as compared to the US... I just told Bob to stop at $20...and the gauge did actually move.
• Canadian money is cool. The bills are colorful but more interesting are their $1 and $2 coins. They are called Loonies and Toonies. Yes, they do say this with a straight face.
Okay, it's time for breakfast. Bob has already checked out the restaurant and found good things for Matthew so we're off. Hope to see whales today.
Friday, August 14, 2009
I was surprised to see wineries in this area. We stopped to take in a lavender farm and learned that there are several very good wines that come from this area.
As Bob was driving I thought I could see berries alongside the road. Sure enough we discovered that blackberries were just turning ripe. Well, after tasting them we decided that they would make a great treat. We emptied our McDonald's cups and filled them with the sweet berries. Matthew refused to take a cup as he just choose to eat them right off the bush. I thought Rebecca was doing better until I realized she had only a few berries in her cup and also had chosen to taste test. Most surprising was when I looked under one of the blackberry bushes and discovered a red juicy plum. There was a wild plum tree protected by the stickery bushes. I was able to snag enough for us to all to taste them.
The weather here today was absolutely beautiful. We took advantage of it and rode a small ferry out to explore a little island. Again we followed "the road less taken" as we hiked across the island. According to the map we walked 4.2km--brownie points to you if you know how many miles that is off the top of your head. The ferry driver kidded us about telling all our Arizona friends about this beautiful spot. He preferred that we keep it a secret. There is no doubt it is very beautiful here but I have a feeling that it takes a lot of rain and cool humid days to make it so green.
Thursday, August 13, 2009
Wednesday, August 12, 2009
As I sit down to write you tonight Rebecca is pretending to be Willie Nelson and entertaining us with her rendition of her favorite song.
Tonight finds us in Port Angeles, WA. It was one of those long travel days. If you read my Facebook page you might have seen my smart remark about taking a midday flight and how lucky I was to sleep in... Well, we'll probably not do this again as it seems all single parents with twin teething children were on this flight. I have a good mental note that getting up early for the flight next time may be worth the hour less sleep.
But we had a good flight and today I was reminded that there are a couple of perks having a handicapped child. One, if you ask nicely the flight attendant will let you board before the big crush of the crowd and two, Matthew has a National Park card that got us in to Olympic Park this afternoon for free. Hey, we take them when we can...
Seattle is as I remembered, it was partly cloudy and just beautiful. I think it was about 70 today. Just right. What a nice change from the valley. We had a beautiful drive to Port Angeles and on advice of the hotel manager took advantage of the longer sumer day and drove up to the observation point in Olympic Park. What a great idea as we had a great view from the mountain and in the alpine meadow at the top got to stand within 10 feet of some deer. Matthew was in seventh heaven!
Tomorrow we are taking the ferry across to Vancouver Island and will spend the day in Victoria. Wish you were here!
Rebecca's Perspective: Hello all! And to those of you in Phoenix, I am... not jealous. :) It has been wonderful weather since arriving here at about 2, easy, breezy, beautiful-- Seattle! After much driving and our first ferry trip of the trip, we arrived in the quaint tourist city named Port Angeles. I love it here. The houses are just gorgeous, as is the view! Like Mom mentioned, we did have the chanced to go up and see Mount Olympia and its nearby peaks, I was enraptured by the fog!!! We drove right into a cloud, then above it! It was beautiful. According to my dad (who read the plaque at the scenic point), there are over 60 active glaciers on those peaks-- I was amazed at that, here in the midst of August. Back in Phoenix, it's still topping 100 degrees. Just goes to show how important traveling is to broadening one's mind and horizons. Well, we are all off to bed I think, must get up rather early to catch our ferry. We'll write again soon!
Sunday, August 9, 2009
We are going to reshingle my parents house in Strawberry. (No, there won't be snow...) But, I can guarantee it will be cooler than the valley.
Twenty-five years ago we put the first roof on (at the time thinking my folks were too "old" to be climbing around on the roof). Now it's time to reroof--and ...well, let's just say, they aren't any younger.
If you are free and want to lend a hand please join us for a roofing party over Labor Day weekend. You don't have to be a carpenter or have specific talent to help. There will be plenty of instruction given. Oh, and we are an equal opportunity family... Girls are just as able to climb on the roof and swing a hammer as boys. Come see if you can pound more nails than Rebecca!
We have room for you to stay with us. Beds will be assigned on a first come basis so let me know! (However, if you are an expert roofer and take MY place on the roof, I will gladly give up my bed so that you can be well rested.) There will be plenty of food and drink--grandma is already planning the menu. We believe that many hands make light the work. It's likely that we may be able to provide a ride to and from the valley. If we have enough workers we might even be finished early and able to go down to Fossil Creek for some cold water fun.
Monday, August 3, 2009
Talking about our experiences is difficult. We try hard not to dwell on the negatives of our situation. However, after a good amount of thought and watching the conversation about the health care reform I am pulled to share.
Our son Matthew has severe handicaps. Once he turned 18 he became eligible for several government programs including health and certain "care" coverage. What each program covers actually varies with the state budget. The health insurance covers all "approved" medical as long as we go to the assigned doctor. The government health insurance (state run) does not provide for dental services after age 21. Currently we choose to have Matthew under Bob's work medical program, giving us more choices for his care and dental coverage. I like being able to find a doctor with whom we are comfortable. Matthew has had so many dental problems (due in part to his disability as well as his medical issues) that he needs the insurance coverage. Respite care offered by the state is a program that offers care givers some time off. Additional programs from the state include habilitation (working toward a particular goal) and attendant care.
In our experience, with each program we must allow more access of the government into our lives. Well meaning workers come in to our house quarterly and to make sure Matthew is being treated well. They observe our living situation. They can look in our refrigerator. Annually, I must account for money received from SSI. I understand that not all families are as cohesive as ours but these are intrusions, none the less.
Last year I had heard from a friend that one could be paid to care for a handicapped family member. I talked to Matthew's case worker and he agreed that this was so and Matthew was already scheduled for habilitation hours. He gave me the contact information for the intake worker who would get me started. I called and left messages but did not hear back from the person. After more than two months I asked the social worker to contact the person directly which he did. The intake worker gave me a giant stack of papers to fill out and informed me that I would need references and all adults in the house would need fingerprinting. I know you're asking, "To take care of your own son???" Yes.
I muddled through the paperwork, got my friends to write letters and met all the requirements. And met with the intake person several times. I had to take tests on appropriate discipline procedures, what to do for an emergency, how to fill out a time sheet and more. At that time the intake worker said that since I would have to take additional classes to be qualified for the habilitation program I could begin with attendant care. All paperwork finally complete she submitted it to the state for approval.
A month later I phoned to check on the progress and was told it could take three months. After three months I phoned again and left a message. No one called me back. Matthew's social worker came for his visit and let me know he was changing districts. Another month passed and I finally got hold of the intake worker. We made an appointment to meet and when I showed up at the office she had apparently "forgotten" and was off campus. What a waste of my time, when she finally appeared for our appointment she couldn't find the state approval or any of the paperwork. Naturally, she offered to call me as soon as she had everything straightened out.
In the mean time I received information from the agency who would take care of the paperwork for the attendant care. They mailed out 30 pages of information, each page requiring Matthew's signature. More privacy issues... and yes, he was considered the employer...even though he has no money and cannot fend for himself.
Almost nine months had elapsed from the beginning of this process. Finally, it appeared that everything was in order. But no. Matthew had never been evaluated for attendant care services. (You'd think someone would have noticed this.) So I was told he would need his new social worker to do an evaluation. Fine. Call and leave a message. Call and leave a message. Call and leave a message... you get the idea. Finally I pulled out the information letter and discovered a supervisor's name. After another two weeks she managed to return my phone call. They were very sorry...the new social worker assigned to Matthew was one of the few employees who is bilingual so he was very busy. Apparently too busy to return a phone call. But they could assign Matthew another new case worker. Good grief but what could I do?
The new social worker does his evaluation and lets me know he has sent off the required paperwork. A month later I remind him about it, after all it's been a year since I began this process. Oh, they got the information back but he has some questions. One, have I provided attendant care for Matthew in the past and two, has he been in a group home where it was provided? Let's see, the file should be in front of his face and the answer plenty obvious. In the end, he tells me that of course, I am not eligible to do attendant care for him because I am his mother. Now...I could have someone else come in to our house and they would pay for it. Or if he goes in to a group home and then comes back home it would be a different story.
The last thing he tells me is that he has discovered that originally I was going to sign up for habilitation. Well, that is very different. If I want to sign up for that I should let him know and he'll start the paperwork.
Wednesday, July 29, 2009
You may know that our family has been gluten free for more than a decade. After lots of trial and error we have come up with a pretty reasonable lifestyle that does not include wheat flour or any of the other problematic grains. But even after all these years I had not been successful recreating a good biscuit or dumpling. Everything I tried would turn into a gooey, starchy blob that was not very appealing.
Until this spring. We found a gluten free mix. Since I am highly recommending it here is the information: Made by Kinnikinnick in Canada, it's called Kinni-Kwik Bread and Bun mix (in the Phx area I have found it in Sprouts). It comes as a Bisquick type mix with the flour, leavening agents, some sugar, etc. So it's super easy to use. Measure out the mix, add your liquid and stir. Presto!
Yesterday as I was poking through the freezer I came across a batches of peaches from last year. I wasn't quite sure what to do with them; when it's 115 out it's hard to be motivated to turn on the oven. But the crock pot was sitting out so I decided to give it a try. I put the frozen peaches in the bottom with a little cinnamon and let them stew several hours. (I don't think you'd have to do this but they were pretty liquidy and I thought would be better cooked down a bit.) Then I mixed up the Kinni-Kwik. I added just enough rice milk (you can use regular milk or other liquid) to make a smooth but fairly stiff mix (say it was somewhere between a cake mix and cookie batter.) I dropped the mix by the spoonfuls on top of the hot peaches, turned the temp to high, and put the lid back on. In about three hours they were perfectly done. The dumplings were amazing, moist and cooked all the way through. They absorbed some of the peach juice giving them a great texture and flavor.
We let them cool a little (this is your only challenge as the smell permeates the house and everyone keeps walking into the kitchen to see if they are ready), then scooped them out and topped with our favorite vanilla ice cream (we use a lactose free brand). Yum... the ice cream begins to melt on the warm dumplings and adds a creaminess and the cold against the warm...Oh, it's good.
You wouldn't believe it's gluten free. I'd invite you over for a taste today but unfortunately it's all gone. But let me know if you want to try some next time.
Monday, July 20, 2009
It seems like we did nothing productive last week and yet we were busy every day. Right now it's so hot here it's time to stay in your house and not leave except to hit the pool... days where the temperature tops 110 are hard on everything and everyone.
The kids and I did get some respite when I was called Thursday about doing an emergency mystery shop at the Grand Canyon. What a break! We had a fun day on the road with stops both ways in Flagstaff. (Oh, and if you visit Flag don't stop at the first gas station you see--we paid 40 cents/gallon less in town.)
Matthew was even more leery this trip about getting too close to the edge of the canyon. He thought looking from the other side of the walkway was close enough. I really had to work at getting him to hang on the tree in the picture...
You know I read somewhere that the average tourist looks in to the canyon only 12 minutes. Can't quite imagine since it is so amazingly different from each vantage spot and during the different times of day. Anyway, we drove all that distance and still managed to beat Bob home.
We also took a fun mystery shop at a veterinarian's office. Our dog needed her rabies shot so was chosen to come along. Talked a lot with the vet about her being old and cranky and he gave her some arthritis medicine. You won't believe the difference it has made. Either she is feeling much better or just very relieved that we brought her home and going to the doctor wasn't the end of the line.
This weekend we decided to give Bob and his work team a hand at the church. The guys have been spending every Saturday getting three new classrooms ready for the start of school. I figured if we want to do something fun ourselves before fall we should help especially as they always need extra hands. Then because they made so much progress Saturday I convinced Bob that he and I could clean the carpets on Sunday (which in this heat was certainly fun and exciting...) Now two of the rooms are done except for the phone and computer lines and the youth room only needs the entry tile put down. This means next weekend they can get the youth room supplies moved out of the third classroom (allowing the teacher to move in a week earlier than scheduled); they can order the rock for the landscaping; and maybe move the library to its new room. Hmmm...it still sounds like a lot of work doesn't it? Well, if you are free Saturday...
So this week the forecast appears to be more of the same. I think that means we'll be staying home with blinds drawn drinking iced tea next to the fans and maybe watching Ice Road Truckers as we try to stay cool.
Thursday, July 9, 2009
My daughter tells me I am bordering on melancholy this week. So here's something more uplifting.
Grow where you are planted... Anyone who knows me well knows that this saying doesn't seem to apply to me. I long to live where it's green, rainy and cool. Yet here I am well over 25 years, in the dry, hot desert.
Have you ever driven the I17 interstate? It's a pretty straight road that connects the low valley of Phoenix to the high mountains of Flagstaff. I used to love driving it in the spring when I was at NAU. I would leave snowy winter in Flag and as the altitude dropped enter a desert, that in the spring was green and growing. Typical of Arizona the sun would be shining most of the time...although, I do remember having to detour through Black Canyon City because the highway bridge was closed when the normally dry washes were at 100 year flood levels... But I digress--that's a story for another day.
When you are heading south on I17 you drive across a fairly flat stretch before a dramatic drop down into the Black Canyon. The turns on this steep stretch may not be hairpin but the unsuspecting traveler is generally frightened enough to ride the brakes all the way down. It's exciting enough for me...and I'm used to it.
So, as you make the first big turn, if you are in the left lane you are right against the mountain. Each spring when I would drive through I would see it growing in the gravel and rock of the hillside. I couldn't help but notice it, bright pink against the desert background and so very out of place. It was a peach tree with beautiful pink blossoms. Someone must have tossed the pit out as they were driving and against all odds it grew. Through spring into the hot summer and then the crazy Arizona winters it grew. Year after year I watched it grow. It was just amazing to see something this crazy tree on the hillside.
If it's not in bloom it's hard to spot. And if you're driving it's even harder...I don't actually recommend looking if you are the driver and careening down the hill at 70+ mph. Just take my word.
So when I start to think about moving to Widby Island in Washington or Grants Pass, Oregon (which coincidentally happens when the temperature reaches 100+ here) I remember that peach tree. What are the chances that it could not only grow but bloom where it was planted?