Tag 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.
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!
Here’s about half of what I dyed today… (The line is around 13 feet long.)
Who does that without checking the weather forecast?? Now, imagine a drying rack filled to collapse and fiber strung from every pipe and rogue nail in the basement.
Didn’t check rightwaytodothings.com. again.
Weather is to be drippy or flakey for most of the week. Guess it’s time to spin some wool instead. I suddenly have a few shows lined up and some good yarny things to share. More on that a bit later. Time to get the little to bed. Test is over for Chloe tomorrow!!! So glad to get back to some medicine!