Tag Archives: Dr Abdallah
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!
Getting a bit behind. Going to cluster up an update with a photo feast here today.
It’s been a hard week or so. Chloe has been feeling really terrifically badly. We all drove down to VA on Friday for a Doc Abdallah meeting. Changed her beta blocker to a new one in hopes of taming her heart rate. All we’ve notice thus far is that she feels bloody horrible. Lily is tooth farming again. It’s a wonder she can speak at all now!
No other news really. The dirge remains the same.
Here are a few photos from the past week and a half.
The week in visual review:
bird for dinner. again.
more scones. coconut raisin.
needle felting. a rare trip downstairs this week.
cupcake candle from erin. so nice.
ice cream therapy. in the bed cave.
Domos for Hannah.
fishes in the sushi shop. we ate shrimp maki.
A week lost in the swirling vortex of life. Super UGH!
Last Friday’s trip to Reston was tough for Chloe. The tilt table test was really hard for her to get through, but she was brave and made it through.
Her POTS diagnosis was tweaked a bit. She is still classified as severe. She also now fits into the hyperadrenergic category. I have been trying to find something simple to provide as a link for that. But it is not simple. I think the most basic thing I can distill it to in my understanding is that in Hyper-POTS both your BP and your heart rate increase instead of the “regular flavor” where the BP drops and the rate increases. Additionally, there are some genetic distinctions that we’ll have to explore. We’ll be seeing a dr. for that in the coming months. In Chloe’s tilt table test, her heart rate jumped right to 174, and that’s pretty big for someone who had just been at rest. I imagine this has much to do with why she feels so bloody bad! Dr. Abdallah began her on 2 meds– Midodrine and Toprol. These replaced the others she was taking, but maybe not permanently. They seem to be helping with her BP numbers here at home, but she is still very symptomatic otherwise. You must forgive my lack of numbers and specifics in this post. I am still waiting on the report and I am a bit murky on the memory because here’s how the rest of that day went…
Come home and chase Midodrine all over town. This is a drug that was off the market for a bit and the specific brand we needed was scarce. Westminster is where we finally found it. Got a round in her and… STOMACH FLU!!
Yep, I WISH I was making this stuff up.
This is what the room looked like. The “theme” of the room was TIGERS. Lots of paintings of tigers. Comforting?
Ok, fast forward to now. Chloe was a bit harder hit by the stomach flu than the rest of the family, probably her starting point of POTS. She is just about back to where she was now. What is bad about that, is that I am not getting feedback from her that the new meds are making her feel much better. She is not distinguishing much difference in experience, though as I said, her BP numbers are better.
I am afraid this might be a longish road.
That’s all for tonight. Wordless Wednesday has been pushed to Friday. Frigiferous Friday ( which in this case means–bearing or bringing cold)
Do the snowball dance tonight.