Friday, February 20, 2015

Snow, Finally!

It finally snowed this week!! We went to bed Saturday night with a forecast of at most 1 inch snow accumulation over the whole day Sunday. We woke up Sunday morning to a Winter Storm Warning effective from Sunday afternoon until Monday evening with anywhere from 6 to 11 inches of snow expected.  The storm took an unexpected northerly path which changed our forecast.  In reality, we only got 3-4 inches of powdery snow, but it was finally snow.

Amber was so excited for the snow and kept watching Sunday evening for it to start.  Unfortunately, the storm system deviated its path once again making it late and not quite where we would get the bulk of the snow.  Amber then started acting a little odd Sunday evening, but we chalked it up to an early morning for church and excitement over the snow. We were wrong.

Monday morning we woke up to snow and a fevered Amber.  She also had some congestion and a sore throat from drainage.  Fun times.  Unfortunately, she can't take over the counter cold medication with the fructose malabsorption and dysautonomia.  The cold medication is not compatible with either condition. Thankfully, Fred was home from work on a scheduled President's Day holiday, so I didn't have to worry about him in the snow at least.  Even though we regularly get snow here, St. Louisans cannot drive in it.  Not even one bit.

Science videos.  She didn't actually do much with that clipboard.  Playing LEGOS when she felt a little better.  And.. her photography art project this week.  Rubber ball painting with a photo to recreate The Connoisseur

My first order of essential oils had just arrived on Saturday, but I hadn't found time to figure them out quite yet.  So instead of finishing my list of cleaning items on Monday I researched oils, queried friends about oils, and then set up the diffuser for Amber.  She said the diffused peppermint seemed to help her congestion.  Her fever was all over the place throughout the day, so it's hard to say if the topical oils helped with it at all.

By late afternoon on Monday, Amber was depressed and mopey because she couldn't play in what might be our only snow this year.  Her fever was at one of its lower points, so Fred and I decided to let her go sled on the hill across the street.  Our subdivision has a couple of large drainage overflow swales which are usually just pretty grassy depressions except during excessive rains when they fill for a couple of hours with enough water to be a small pond.  As it has been dry, they were still only grassy depressions.  One of the swales is immediately across the street from part of our yard and quite convenient for sledding.

We bundled Amber up only to realize that growing kids also have hands that enlarge and outgrow their gloves.  She lasted one trip down before she lost the snow gloves.  As I was supposed to just be the person at the top of the hill, I gave her my spiffy LL Bean gloves.  Of course she promptly decided I need to take a couple of trips down on the sled with only my plain ole stretchy gloves that of course were soaked through after the first run.  We could tell Amber wasn't in tip top shape though since she couldn't manage to walk up the hill alone or even get up off the ground.  She'd crash at the end of her run and then yell "Marshmallow down.. marshmallow down."  That was Fred's cue to pull her up.   Thankfully we were the only people out there sledding.

We only let her sled for a half hour, but it was enough to blow away her blues. It also spiked her fever again.  The illness made her miss flute lesson, the Dysautonomia support group meeting, serving at the pancake dinner on Wednesday, and even Ash Wednesday services.  Her fever did eventually break late Tuesday evening, but she wasn't fever free early enough to safely attend anything on Wednesday.

Marshmallow down!  Marshmallow down!  She said she felt like a marshmallow all bundled up.   It's also really hard to do depth and distance with an iPhone camera on a big white hill.

Even being sick, we did push through quite a bit of school over three days this week, but still not enough.  Next week was to be a break week for us since co-op is also on break.  However, we can't keep taking days off and finish our required core hours, so Amber has half days next week instead of whole days.  She is being great about it, but I know she'd rather have the whole week off.  I'm planning a few fun things to offset the school work.

Today is another day off because it's our February Amber and Mom day.  We attended the symphony, raced to lunch, the grocery store and home ahead of another ice and snow event.   Now we are ready to play games the rest of the afternoon.  At least Amber gets today off from regular school.

Amber did complete lessons in Cover Story, her new writing curriculum, most days this week.  We are still happy with the product.  Amber loves writing in the journal and doesn't complain at all about the assignments. However, I have not graded a single item from this yet.  The curriculum recommends for the teacher to only grade once a unit.  It makes it easier on the teacher and less stress on the student when they know it is possible to go back and edit writing assignments at a later date if they desire.   So far Amber likes this approach.  Cover Story also includes tests for each unit / chapter, but we aren't big on testing anymore and I doubt we will utilize them.

Again Amber completed a massive amount of science this week using both her Real Science 4 Kids text and online resources.  The online resources were a real blessing on Monday when she just wanted to lay on the couch.  I decided she could watch science videos as well as she could Disney channel reruns.  I didn't make her do book work with the videos that day, but she watched over an hour of science videos.

Finally, we did hear back about Amber's AAG antibody results last week.  We are a little annoyed with the lack of information coming from the results.  After months of waiting all we heard, in an email, was that the antibody level was normal.  That's it.  Amber doesn't see her neurologist for a couple more weeks, so we aren't sure where it all stands right now.  It's quite frustrating.

Symphony girl... Parking was horrid today and then an older lady had bought the single ticket next to our subscription seats. The lady was not happy to find out that we had those seats.  Also Amber being totally goofy at dinner, and our BIG snow of the year.

The Mayo Clinic in Rochester has a pediatric dysautonomia clinic where they can test Amber for the remaining possible causes in less than one week.  All the tests in once place with doctors that talk to each other, and over a very short period of time.  We know a teenager from the support group who just returned from testing there and it was quite a successful trip.  However, Amber has gone through substantially more local testing than that young lady.  We just aren't sure how productive it will be for Amber at Mayo. We plan to seek advice and opinions about a Mayo trip from Amber's pediatrician (who isn't really much involved in this right now), the pediatric GI doctor (who is lovely and already has specific requests about further testing), and the neurologist (who might not be open to us seeking a second opinion). 

I'm personally much conflicted at this point.  Amber wants to go some days and other days is quite nervous about the prospect of traveling so far.  Our trip would have to be by car because Amber can't fly with her screwed up baroreflex.  I definitely do not want to drive up north during Winter.  Amber would also have to stop her medications prior to the trip.  So that makes traveling even harder.  I'm trying to put this concern away for a while.  Amber is not declining at the moment and I'd like us to take a bit to make this decision.

With Amber getting sick this week, not everything around the house was cleaned as I planned.  But progress was made.  I hope to finish off the last remaining items this weekend along with starting on Amber's Narnia dress costume. 

Happy Weekend!

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  1. Oh, I hope she's feeling better! I'm glad she got to enjoy the snow for a few minutes. Snow is so common here that our reaction is :sigh: ;) We got another 16 inches? in the last week. I think we're nearing 100 inches this season...Where is spring?! LOL It sounds like REAL Science is a hit! It's on my list....Are the experiments easy to pull together??

    1. The experiments are very easy and for most of them we had everything just around the house. I'm getting ready to order the chemistry unit too.

  2. I know you have a hard decision to make. I would tend toward going to the Mayo Clinic if you can. I tend to want to talk to "the best", but a doctor that really cares is equally good. You live in a larger area than us. There are not many doctors around us that have a clue about how to help our disabled adult son. I am glad you all got snow. We are still waiting.
    Blessings, Dawn

    1. We are lucky to have a few specialists who understand dysautonomia. We also ha e two great children's hospitals. But Mayo would be complete. I'm just concerned because she's had so much testing, what more can they really test for. I've decided not to decide for now :-)

  3. I hope she is feeling so much better now Christie. I know you have hard decisions to make and we will continue to pray. I'm so glad Amber got to play in the snow a bit. We didn't have enough to play in but it was nice. It's almost gone now! Hugs from us both!

  4. Christy I hope Amber is feeling better! I pray for her always. You got about the same amount of snowfall that we got all winter. My daughter wants to see more snow before Spring gets here but I'm hoping not LOL.
    Take things one day at a time. I'm glad you got news back finally from the tests, short and simple yet I can see how you are frustrated. Just keep your head up and don't stress too much over house chores. Go at your own pace ... you are going through a lot so take it as it comes.

  5. That's a tough decision to make so you are probably wise to wait a while before making. I will pray that God gives you peace one way or another. I'm sorry Amber was unwell this week, but it really doesn't seem to have stopped you all from having a great week! I am also interested in the science you use. Do the videos come with the program or are they ones you out source from youtube? I would love to give my guys a bit more science knowledge without requesting any more writing from them.

  6. I learned a new word today, swale. We have one near our house. Since our snow has all melted, thanks to a rather early spring, it is full of water and ducks.

    I don't understand the US medical system but I know with Philip getting to a hospital that had all the tests and all the experts under one roof was wonderful. It was a week of incredible stress while Philip was diagnosed but we got the answers we needed. Those answers made all the difference for us.

    1. Really, a new word. Wow :) It's probably just more commonly used here than up north. To be honest, I don't understand the US medical system either. I'm not sure anybody does. Thankfully, the Mayo Clinic is in-network for our insurance and referrals are not required by our insurance. That means if Mayo will approve Amber as a patient, then we can go there with the same financial requirements as local doctors excepting the travel and stay.

      At this point I wish we had gone a year ago, but now I'm not sure how much more is left to do. That's the main concern after how travel will affect Amber. Still, a year ago we might not have even thought to have them check for dysautonomia. It's not something doctors normally look for, but thankfully Amber's GI doctor figured out the autonomic nervous system was malfunctioning and led us down the right path.

  7. Huh. Looks like we're fairly nearby. When you guys got 3-4 inches, we got 8. Then ice and another 4 or 5 more inches of snow. Stay warm today! I'm looking forward to 30's later this week, heatwave!

    1. We got ice and another couple of inches too. Now we are supposed to get another inch Wednesday. I wouldn't mind if it was playable, but this inch at a time of powdery stuff is silly.