Category Archives: POTS
Oh, I’m behind on the bloggin.
So many good things have been going on that I have MEANT to blog about….
You can check out the flickr stream for the visuals. In the meantime, here’s a quick update.
Chloe is doing BETTER! A bit. But We’ll take it! Big meeting on Tuesday night with all of the Doctors to make a plan for the summer. We’re just trying to go with whatever each day serves up and making the best of it. She is still really dizzy all of the time, and there are some days that feel bad, but there have been other days with SWIMMING, and SKATING at roller derby! ( see Jimmy’s blog for details ) That’s HUGE!! We’re really happy and hopeful that we’ve seen the lowest point now with the POTS adventures. She has started outpatient physical therapy, which will help her work on her strength and endurance.
And it’s almost SUMMER… which helps with the moods around here for sure!
Lil is great, and looking forward to school’s end in a couple of weeks.
She’s still loosing teeth too.
Today we wrapped up a project that has been in the works for a couple of years. It’s been a lot of fun and makes me really happy.
Now I get to smile about them every time I go out in the garden.:)
Here’s a slideshow if you’d like to gander at the individual flags.
Hello there bloggy friends.
This site is organized a bit differently now…. Jimmy has been making some changes. Now you can click on “fiber arts” to see the latest gnomegarden and fiber related developments. Those yarny exploits will be kept mostly separate there for those of you who don’t care to follow the rest of the family adventures and vice versa. The blog will continue to follow the life and times ’round these parts. Please stay tuned.
I have not updated you on our POTSy life of late… I wish it was because all was SO GREAT that I forgot all about it. Not so much. POTS continues to rule the days here at the Delight Ranch.
We are working with a new team of providers and new-ish treatment protocol for the past month. The focus now is not so heavily on medications, but on restoring her physical conditioning as well as some different medication choices. It seems to me very similar to the approach they take with astronauts who experience similar orthostatic hypotension as a result of being in little to no gravity. Chloe now has a regimen of exercises to get through each day, in addition to getting vertical and moving around a bit more each day. It is slow progress, and unfortunately is not met with actually feeling better at this point. It’s still ALL DIZZY, ALL THE TIME. Which just makes her doubly sad and really uninspired to push herself.
We restart each day. Try to keep a hold of any progress made and to break with the frustrations that were part of the previous day. She is up and around more– and we take that as some improvement. It would just be so much better if she either could SLEEP or just didn’t feel quite so dizzy all the time.
Bob face-timing Chloe. Telling her to get up and come play, no doubt.
To catch you up from end of last post, We did not make it to the roller derby bout as a family, but Jim and Lily did. They had a great time, and Lil even got to skate as jammer for the team at one point! You can check out the pics on Jimmy’s blog. We are hoping to attend the next one all together–
Chesapeake Roller Derby’s Game Two – The Land Hos v. The Vampirates
Saturday, April 23 · 5:00pm – 8:00pm
706 Agriculture Center Drive
Chesapeake Roller Derby
Don’t miss out on seeing a hard-hitting match-up between two of Chesapeake Roller Derby’s three intra-league teams – The Vampirates and The Land Hoes. What will the Rolling Plunder be doing?? Refereeing, of course!
Get ready for roller skating pirates, live music, cool vendors, family fun and fast-paced derby! Come dressed as your favorite pirate!
Doors open at 5pm, game at 6pm!
Advance Tix: $10 adults, $5 12 and under
At the Door: $15 adults, $8 12 and under
Season Tickets now available – Get 3 or 5 games at up to 30% off!
Tickets available at http://www.chesapeakerollerderby.com/ in the online store and at Starry Night Bakery (330 One Forty Village Road, Westminster MD) & Blue Sage Florist (3411-B Sweet Air Road, Phoenix MD) Credit cards accepted at all venues!
This week brought a few changes for Chloe. The trip to Reston was exhausting as usual. A few minor changes in meds. The doctor thought that her blood pressure numbers were better. The changes in her meds are to meant to further address the dizziness now. It hasn’t budged as of yet–but she has been feeling well-enough to have a couple of friends visit this week. That is a good thing and it’s so nice to hear laughter coming from her room.
For whatever reason–much less sleep than usual going on for her and thus the family. Falling asleep lately looks like 4-5am for her. Homeschool classes at 8am. Big bummer. Have to figure that one out.
The home-services ball is rolling very slowly. Making more calls on those tomorrow. On Friday we’ll be seeing another cardiologist in hopes of finding someone to follow her locally.
Not much else to report for the past week really.
I cannot leave this post without a big THANK YOU to the awesome families at The Montessori School who have set up a “meal train” page for us. We have enjoyed some amazing soup and bread from Dear Vivian, yummy butternut squash soup from the Field family and the most amazing pork barbecue that any of us have EVER tasted from Jill Woodward and The Bachvaroff family. THANKS to you from the bottom of our hearts and bellies! It is a great help and comfort to have a meal appear with such love. You are all very appreciated!
The super colossal THANKS this week goes to Dr Shoe, one of Chloe’s orthodontists. Chloe got braces put on early this past fall. Our orthodontic experience has been super great with their practice. Their staff is so friendly and they make it almost FUN to have braces. There all all sorts of incentive programs for the kids and a comfortable, fun atmosphere in the office. Chloe has always looked forward to her visits. All of that aside… Dr. Shoe MADE A HOUSE CALL this week to take care of Chloe’s mouth. He brought things to help Chloe in caring for her braces. He changed her wires and gave her an awesomely colorful mouth! Having sore teeth for a few days never felt so good! I cannot believe how lucky we are to have them caring for her! Thanks a MILLION times over.
Fiber update on the way.
Squinky & squinty
In Reston, super bummed.
Things are pretty much the same with Miss Chloe. She has settled back into her old meds. We return to Reston this Friday to see if Dr. A will make any changes. It is all sooooo. slooow. The meds take so long to show if they will benefit at all. The Doctors … well, are so busy. We are working on some additional options and now have a case manager to help in the crawl towards wellness. Phone calls today might mean help in a few days or few weeks. Lists are long. Improvements are so tiny, if they come at all, and hope is so hard to believe in. Alas and alack– it is the only way right now. We’re all hanging in just waiting for a grain of sand to shift and movement towards the positive. Spring is coming– those few nice days were great, weren’t they? Got the windows open and made friends with a few more stink bugs. Going to get the garden catalogues out soon and start to think on this years growings. Also this years groundhog hunting, else the growings are in vain!
Keeping busy– Chloe is still drawing loads of eyes, writing art-letters, keeping at her school work, and skyping with her cousins. Lil has been sewing and is about to begin embroidering some dish towels. She is also getting ready to play cello at her first public appearance! Very excited about that.
I’ve been doing lots of dyeing and spinning. Went to a small show last weekend and had a nice day.
Jim has been making some amazing tiny dioramas and was a “Pick of the Week” online and made Flickr’s explore. Check it out. I think his new stuff is awesome. ( photo stolen from jim’s blog)
More news as it happens.
Family Art planned for this weekend.
Here are some days…
What else? Scones. ( In her Coraline sweater)
Lil in with the faeries
Pigs in a blanket
Wool for dinner, again.
On “special” last week at Trader Joes
Play it 20 times!
Again with a DAISY!