Body Worlds And The Brain

We don't really take vacations anymore. Like many people since the economic collapse, we will occasionally take an overnight, or a couple of days, close to home. Because of this, and because Rachel is now doing school from home, I like to try and get her out to do interesting and educational things when I can.

Yesterday she had her post-surgical checkup in Portland, so I decided that we'd take the opportunity to see the Body Worlds exhibit at OMSI. The exhibit is ending soon, and I knew there wouldn't really be another chance to see it before it leaves town.

By the way, the incision is healing nicely, and the stitches will begin coming out on their own soon. :)

The surgeon's office is on the 8th floor of OHSU's Center For Health & Healing. From their huge windows, we could see across the river to OMSI, just two bridges away, and about 1/4 mile as the crow flies. Should take about 5 minutes to get there, right? Hah! You know nothing about Portland. It took about 15 minutes, and I had to use my GPS or we'd have been lost forever.

The exhibit was amazing, and we both had a great time. They don't allow photos to be taken in the exhibit, but I do have one of Rachel from outside...

And another of the shirt she picked out for her souvenir...

Rach thought the lightning bolt really represented her epilepsy well, and the Brain Power cracked her up. Oh, how I love this kid!

We are hoping the brochures arrive this week, so we can get them circulating in town. In the meantime, it's business as usual, with school, appts., family, and life. We are so looking forward to the weather improving, so we can get out and move around more comfortably, and start having some fun.

-Kelly

Rachel Surgery Update

Today is the day that the surgical dressing was scheduled to come off, and Rachel was more than ready to have it done. The adhesive cover they use is super thin, but it was about 5"x5", and it pulled and felt really uncomfortable when she tried to move her left arm. I think it bothered her far more than the incision did, at least after the second day.


So, she got up, and we went right to work. I was lucky to have a small vial of medical adhesive remover leftover from a few years ago, so I used that to start the edges of the dressing. If you've ever had your skin peel after a sunburn, then you know what the thickness of this stuff was. Incredibly thin, but with a glue that pulled at the skin and left it red.


We finally got it off, and got a good look at the incision site. Not bad, considering the fact that they'd been working with scar tissue. The incision is a bit lumpy because of that thin skin, but I know it will smooth out over time. It's not looking irritated or hot, and must have dissolving stitches, because there are no knots, and the thread almost can't be seen in most places.


Rachel was very happy to be able to have a real shower, and get completely clean all at once. It's amazing how good that feels, when you haven't been able to do it for a few days. She still can't submerge the scar for several weeks, but she can shower carefully, at least.


I may take a photo once it's healed a bit more, but not yet. It's still pretty fresh, and that just icks some people out. I just keep thinking that there's an awesome little device under that scar, which helps keep Rach feeling good, and she likes to joke about being a cyborg, so it's not so bad.


Thanks for hanging in there. I apologize for not updating sooner, but there wasn't much to share until the bandage could come off.


-Kelly

VNS Surgery Day

Hello, friends and family!


What a day it's been. We woke at 4:30 this morning, and were out of the house by 5, in order to make it to Portland by our 6 a.m. check-in time. Rachel was the first surgery of the day, so we were hopeful that we might actually get to go home before evening.


There was a question about whether Rachel would have to stay overnight after her surgery, because of the leads. As it turned out, the leads didn't have to be replaced, she came out of anesthesia quickly, without feeling ill, and we got to leave the hospital before noon! Amazing. We were so happy.:)


Here is the only photo that Rach would allow me to take at the hospital. Note the fashionable sleepwear...

So now we're home, and I need to go pick up meds from the pharmacy soon, but there's more news! We have a new donation site at YouCaring.com. All donations made there for Rachel go directly to her account at Paypal, and it's easy to make anonymous donations that way. Please feel free to spread the link around.

As a result of our new site, and some really fantastic friends and family, I was able to increase the thermometer by over $600 today! We are incredibly close to being 30% of the way to our goal! Thank you all again for your amazing support and love. It means the world to us.<3

-Kelly

VNS & Valentines

Rachel and I just returned from Portland, where we spent a not-so-lovely 3 hours at the nuerosurgery clinic. She was measured, weighed, x-rayed, and had a blood draw.


We spoke with a nurse, and the surgeon, got special soap to wash her with the night before surgery, and a page of instructions, so we'd know where to go, and when, and what to (not) eat the night before. The big day is the 14th, Valentine's Day. I'll need to get her a special treat to enjoy for after we get home.


In case you're not familiar with VNS therapy for seizures, here's a link to the Cyberonics page for patients. There are a couple of good videos there to check out, and a list of FAQs. Rachel is having her second unit implanted, as the battery of the first one is just about drained. It's lasted about 6 years, which is good.


We may have to stay overnight, which I can't get excited about, but Rachel is looking forward to it. I don't know how she can like hospitals so much after everything she's been through, but she does. They just make me anxious.


I will try and get a couple of photos to share, but promise there will be no bloody ones.;)


-Kelly

New Year, New Adventures

Time does fly, doesn't it? I can't believe it's been 9 days since I updated last. The New Year is a time of adjustment for us, as there are usually changes with insurance or pharmacies to manage, and that takes up my time for awhile.


This year, it's a change in pharmacy, and we had to leave the one we've been using for 20 years, which was hard for me, especially because of all the meds Rachel takes, and the relationship we've built up with the staff at the old one. In addition, I was at the end of a series of three cervical spine injections, which wipe me out for a couple of days.


We haven't had any Paws donations in the last week, but there is some good news: I have a great group of friends who sell on ebay, and they have come together to support us by committing to donate a percentage of sales from this month to Rachel's Paws account. This has also inspired me to clean out my own ebay space, and get some things listed.


In addition to all this, Rachel's 17th birthday is coming up in a couple of weeks, so we have that to plan for, and then she has an appt. on Feb 8th with the surgeon who implanted her VNS unit almost 6 years ago. The battery is wearing down, and we'll determine whether it's feasible to replace the entire unit, as the newer one has better functionality, and is easier to determine when it needs replacement.


So, as you can see, even when I'm not updating a lot, there is always something going on behind the scenes with us. If you ever wonder where we've been, or what's going on, just drop a comment on any entry, and I'll be sure and respond right away.


-Kelly