Thursday, September 18, 2008

Puppy dog tails

First, a shout-out to R.A., my local nurse friend extraordinaire! I don't think I have the correct email for you any more. I had to shut down my 13 year old Yahoo email due to someone who wouldn't leave me alone, which is why no more comments are allowed to be left here (so I don't have to see her & her annoying comments ever again). I have written you twice and not received a response, including that we were on our way to your hospital with DD and hoped you were there so we could visit. I still haven't heard back from you so please, give me a shout.

It's been crazy! As I wrote to a good friend earlier today (whom I hope doesn't mind that I copy/paste the info here because it is SO detailed I'd go crazy trying to cover it all relying on my brain to remember), here's what's been going on:

Growing independence & my Shelby: I was going stir crazy this morning and we've desperately needed for bread for days. So, I power scootered down the street with Shelby & checked the mail and worked on service commands along the way. She never walked by the scooter before since I use my manual chair exclusively; I had my training orientation last week and used the scooter, thinking it will be easier to handle the leash, clicker, dog, and treat bag. So I figured I'd better practice with her & the scooter since she will start coming with me to the weekly class beginning tomorrow.

She did a great job going to the mail boxes, didn't mind the scooter whatsoever. I was so motivated I did another first--scootered the 1/2 mile to Walgreens & the supermarket for bread. I came home, leashed Shelby again, and we scootered the neighborhood circle. She wanted to run (she runs several miles a week with DH which is another reason for me to use the scooter--she'd take off with me if I used the manual ROFL).

I know it doesn't sound like a big deal but I am so excited I took this step, no pun intended. I have never gone out on my own since becoming so chair-dependent until last week's paratransit ride. The self-conscious feeling was gone. I enjoyed the fresh air and loved the independence. I think that necessity-imposed ride to class really did a lot for me. I'm realizing that yes I need a lot of help, but there's still a lot of things I can do for myself as long as I put the self-consciousness aside and just DO IT. I know it's a small thing in the grand scheme of things but for me it's an accomplishment.

Now I'm keeping my fingers crossed that Shelby will not freak out at the paratransit van chair lift tomorrow, that she will get along with the other dogs at class, and do well on the return ride home! Yes, I'm nervous LOL. I still wish I had a friend to come with me.

A miracle: I haven't shared this because though it's tremendous it's also embarrassing and I feel self-conscious. The church I attended for years until last year (when I was becoming homebound) held a church-wide fundraiser without telling us and a week ago showed up at my door with an envelope containing a check for 10K. I battled for another 10 minutes trying to refuse it, wouldn't take it in my hand, and she said it was a unanimous decision by the board of directors to do the fundraiser and that I did not HAVE to do the surgery with it, but if I decide against it it should be because I don't WANT it, not because I don't even have the choice. I said the money could be used to help others, I'm just one person. She said I don't have a choice but to take it and (she grinned while saying this) say thank you and just be gracious and accept the help!

So. That's where I'm at, struggling with whether it's time to let things run their course, or have Baltimore do this, pray for success to have more time with my children. Surgery # 15 is now a possibility.

Local cardiothoracic guy: I saw the local cardiothoracic surgeon again Monday. We waited (with children in tow) from 3:08 to 6:26 for Dr C, the director of the cardiothoracic department at the big hospital here. This is also the doctor who last year would not do my surgery because of the Ehlers-Danlos. I was hoping if he saw how well surgery went in Baltimore in December that he would reconsider doing the next surgery himself. He read Baltimore's testing and surgical notes and my plan rather backfired.

This time he more adamantly refused, saying it is much more involved than others with arterial TOS and he doesn't trust himself with it because of how bad my form of EDS is, the artery's importance and Baltimore really needs to be the one to handle it.

I hated hearing it, knew it was a naive hope to have, but thanked him for his honesty. I should have listened to what God seemed to tell us last year when he said he was afraid of an EDS surgical patient--that if he's honest enough to admit that, he doesn't need to be cutting me open!

Baltimore: I did finally leave a message with Baltimore this afternoon. They should respond within 48 hours. I asked them to let me know the approximate cost of pre-op testing, appointments, and such that will be in addition to the 10K. The check is still in the envelope, feeling so weird about it. We need to come up with the 2 plane tickets/hotel/car/food money and are overwhelmed by the details that are so stressful whenever I have to travel to MD and NY for my surgeries.

A secret blessing: This morning I opened the door to take the kids out to my neighbor's van who picks them up and takes them to school with their kids. Collin said, "Mommy there's mail in the door!" and sure enough tucked into our security door was an envelope from a church in Vail that I have never been to. Thinking it's an ad for their church, I go ahead and open it but I find no note, no ad...but $15 cash. I have NO idea who it is who blessed us in this way, but I give thanks to the person's generosity (and helping us get bread again today!).

Moving: We never would have been able to move into this area a bit over six years ago had the timing not been so awesome, with them being required to sell the last 2 lots that same day so they could close the subdivision and move to the new one that needed open to begin sales. We were living 5 hours away from here and they would not count my teaching income up there because of that, only Sterling's as a state employee. Ugh! Anyway we got into this area and are glad of course. So I moved in here with a 14 month old and was expecting Meg (after staying at my mom's a month because construction was behind). Now with 7 and 6 year olds and being into the full-swing of full-day school (BOTH of them finally YAY!) we decided to go for it. We can't eat together at the table because we can't fit back there (that tiny dining area by the sliding glass door in the kitchen), there are no places for desks for the rooms being too small so right now Collin uses a shelf on his shelving system though he has to sit much lower than the shelf, and Meg uses the nightstand we took out of our bedroom and put in her room for her CPAP.

Anyway my point is that because of the subdivision closing the day of our contract, they gave us our land for free, giving us a tremendous discount. The market has picked up a bit this year, although certainly nowhere near as good as 2 years ago, but definitely better than 6 months ago. Even though things are still a bit slow, we thought about it and it seems like a good time to go for it because with a poor market we will still make a little because of what we saved on the house. We will make a little bit to have a small down payment on another house. It certainly won't be a whole lot, but there's no way we will lose anything. This is likely the only chance of getting into a bigger house for this amount so it's a win-win situation kwim? We have been clearing out like crazy via Craigslist and eBay and the place is clutter-free and clean.

We'll get DH through his surgery on the 25th, my mom's visit from the 20th to the 27th, and then go ahead and get the house listed officially after that (we've already interviewed the real estate agent we want).

Fluff: Tonight I got the urge to "girlify" my Shelby. I mean, I've only had boy dogs since my girl Twinkie died when I was in Kindergarten! So I made a bandana of sorts. Instead of tying it around the neck and risk catching dog hairs, I sewed a slipcover for her collar to take away that pesky collar-itch, using a decorative stitch, then the bandana comes off that! With it being 2-ply instead of 1, and a pressing, it looks much more professional that single thickness. Her next one I am going to use contrasting fabric to stitch on her initial LOL. Hmmm. I wonder if there may be a market for non-itch collar cover bandanas out there? Yeah I know, I'm desperate, but I have to think of a way to get us to Baltimore. Anyway, here's Shelby sporting her new accessory:

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