Sick day

Another day done. Exhaustion.
Up, down, up down. Down.
Down.
Down.
I will do up again.
Maybe tomorrow.

After a day home with two sick kids I have nothing left. Dysautonomia is hard enough. Tack it on to a long weekend and it gets even harder.
Accomplishments today:

A decided to do 'homeschool' while home from school. So she learned about different watercolor techniques and tried them out. She did her handwriting work, got worked up and calmed herself with techniques learned and practiced in the last year of OT. Then she completed her handwriting. She read up and watched some shows about geography and science. She painted some more. Made herself some ramen noodles, and ate the whole package. She spun in circles, sang songs, and tried to play every note of every instrument/noise on the electronic keyboard. All this was interspersed with urgent trips to the restroom. Oh, and she put a load of laundry in the washer because some items 'needed washing right away'.

C ingested a whole cracker and some soda before bedtime. She also wanted to know why her sister wasn't as sick as her. Sorry, she actually is. You just aren't sick frequently enough to have mastered it like sister. I know of nobody who can do so sick like A can!

I don't know if I have the bug yet. Sure, I have all the symptoms the kids showed, but that is my normalish self. I survived, directed from my spot, called in for some support for acquiring some crackers and soda, and talked C and A about art, science, language, and geography. C caught on and reprimanded me for teaching her when she was sick. I answered questions as best as I could. Yes, I got a few, 'You doesn't make any sense.  You rest, I'll ask again later.'.

We did it just fine.

I really hope this is a quick and easy bug. I love having the kids home, I really do! I love the look in A's eyes when she sees me do something she didn't know I knew how to do. I love how she absorbs the world around her! What I don't like is the exhaustion. My body can't do this. I pride myself as a great couch parent. It works because I have great kids. When we are all sick and sleep deprived, who is supposed to run the operation? Today, A was my go to person for being up. She can't be still, so she can do most things for the rest of us. Tomorrow? We will see.

But for being a sick day it was a really great one!

One day at a time...

After weeks of increased symptoms of my POTS I finally made an appointment to see my doctor. So last week I went in and talked to him about my troublesome symptoms. His response was not my favorite, though honest and mostly a reality check. What it came down to is I am expecting too much of my body, over exerting myself, and then suffering for days as a result. A new prescription (6 more pills each day) and a kind chastisement are what I got to help me.

Here are some of my guidelines for me based on reccomend actions.
1. Drink water
2. Rest
3. Drink water
4. Don't lay supine too much
5. Drink water
6. Eat salt and salty foods
7. Exercise while laying down
8. Drink water
9. Don't stand for more than 10 minutes
10. Drink extra water
11. Don't sit for more than 30 minutes
12. Stretch
13. Avoid carbs and sugars
14. Eat more salt!
15. Drink more water!

As for Athena, she loves OT. We have learned so much together. She is highly sensative to noises and her environment. I have made some therapy items for her to use at home. She loves the body sock! Hopefully the seams will stay this time as the last two tries ripped out when she stretched too far. I think we all love the weighted blanket. I will probably make a weighted lap pad for more portable uses. Her destructive fits are nearly gone and her ability to tell me what is upsetting her has greatly improved!

Each day is a new day and should be treated as a new chance to meet small goals.
Today I cleaned one shelf in the bathroom closet. I will try to be pleased and accept it as a good effort for the day!

Doctors and stuff

So this last few weeks have been filled with more doctors visits.

I went to the ER near the end of the kids school year. I had tried everything the doctors have recommended that has helped before, but found no relief. My tremors were okay if I was laying down. I was proud that I was able to advocate for myself. I told the nurse I was not going to wait for a room to lay down but that I had to lay down then and she could tell me where or I would find a place on the floor. It worked. I got a bed in the hall. I really didn't care I just had to lay down. The nurses were nice, but had no idea of what I was dealing with. Many of them offered to help me sit up and get more comfortable. It was a nice idea, but defeats the point of me laying down. The doctor actually looked at my history before making any decisions. He said it looked like I had had every test they might do in my file already and asked me what I thought was needed. He took me seriously when I said I needed fluids to help up my blood volume. I was shocked when he said that it sounded like a good idea. He still wanted to run it by my physician and do some quick blood tests. Basic blood test was relatively normal and so I got my IV and felt much better.

 I finally went in to see the oral surgeon. As expected I am a routine, but complicated case. When my wisdom teeth are taken out it will have to be done at the hospital. Of course it wouldn't be the hospital near my house. We have to get it done soon before school starting in the fall messes with everything. Now we await approval from the insurance. It just may be my birthday gift to me. Yipee?

I took Athena in to meet her new PCP. They were very accommodating to my long list of things I wanted to go over about her care and plans for testing. When I talked about behavior issues they surprised me in a good way. Over the years I have done many things to adapt for Athena at home and there are even some things the school has done with me. I cannot do this forever and she will have to learn for herself how to work in the environments that overwhelm her so much. So the doctor said they would normally refer to a pediatric psychiatrist for testing but they have found that too many patients are put on medications in hopes of resolving something. Knowing that I have been able to work with her they wanted to try a different approach with Athena. So they asked if I would be okay with a referral for occupational therapist.  I was thrilled with this as I know how much an OT can help and it would be really good for her handwriting as well. (She did not meet expectation on her report card for handwriting.)

So this week we went to the first OT appointment. Athena was nervous and shy, but well behaved. They did the overall assessment and testing of her grip and pinch strength. Most of the assessment was quite familiar to me and I knew they would go back and score it after we left. What I didn't expect was to be shown the results of the grip tests right away. She was right at the bottom of the range for her current age for two of the tests. For the other test she was right on target if she was half her age. The OT said that this is likely where most of the work would be done and that this could be a big factor in her struggle to do homework. It was an epiphany for me. If you are struggling just to hold on to the pencil then doing all those math facts is overwhelming in the amount of writing ahead of you without even doing the actual math! Lacking the hand strength would also be a major factor in not yet knowing how to tie her shoes, close snaps, and button small buttons. She was trying but when she couldn't make things work she would act out. Her current grip/pinch strength is closer to that of her cousin Lydia (assuming Lydia is on track) than to most of her peers. I am so glad I decided to push this with the new doctor. I was sick of being told she will grow out of it eventually. We will keep going each week to see the OT and work throughout the summer. When August comes we will make a plan for the school year. I know that we can make things better for Athena by simply helping her gain the muscle strength needed to write and type.

In all I am learning to be a better advocate. It is about time it worked out for us!

I hate socks.

I hate socks. There are never socks around when needed. Really, I hate what socks represent. We have plenty of socks. They are here somewhere in the house. I could clean under beds and do the laundry and I know they will appear. Yet I can not. I have all I need to solve the problem except a willing body. I tried cleaning today. I didn't bend over I sat down and reached under a child's bed. I got a bunch of laundry out before slicing my finger on broken glass. I had forgotten there might be some left. When it broke I couldn't get it all cleaned up as I would have liked. I bled and cried a little. I bolstered myself back up and kept going (with a bandage delivered by my DH). I cleared out under that whole bed, removed the sheets and bedding, and... Was done. Mattress off the frame, no bedding, floor covered, under bed clean! My heart was racing and I was so light headed. Then I heard a voice. A very real voice call to me. "Mommy! Please will you cuddle me?" I had left her in my bed in her feverish state to try to do something today. Her meds had worn off. I was done. Back to bed to cuddle the wee one crying in discomfort. Together we have spent the rest of the day in the bed. We did venture out for dinner, but the lights were too bright and noises too loud. It is the middle of the night and she rests peacefully now. I know her meds will wear off soon, I will give her another dose so she can sleep, and tomorrow we will do it again. Only daddy will go to work. He wont bring lunch, bandaids, or snacks. He won't laugh at the mess I made and make the bed so a child can sleep in it. I will do my best, because it is all I can do. Maybe I will try to find socks for the school bound child. Maybe I will just smile as she leaves in Christmas socks that are mine.

A Job

So the week before Thanksgiving I got a random call from the school district. I had turned in an applications a few months earlier, but the position had been long since filled. I was suddenly being asked to interview for a position I had not even applied for! I did the interview on the belief that it wouldn't hurt, and now I have a job. A real job! I work with the preschool aged children and am the special education para educator. This has caused a few changes in the family and household routine, but all in all it is a very good thing. Three days into the new job I do miss my girls during the day, but they are in school so we are only apart about an hour more each day.

Today is a SNOW DAY! Day four of work is spent at home with my kids. The girls tried to go out and play in the snow but, according to them, "The snow is too cold!" :-)

The begining...

So this is the beginning of this blog. The purpose here is to document and commemorate some of the moments in our lives and to share them.

As I was loading Athena into the van one day she began complaining about how hot it was. She didn't want to get in the car or her car seat be cause of the heat (It really wasn't that hot, just warm). The conversation went basically like this:

"I want the cold back. It's too hot!"
"Where did the cold go?"
"I not know."
So I asked the next best question to try to understand what she wanted to happen. "Well, where would it come from?"

After a long pause she slowly responded, "Ultimately, the cold comes from the 'tarctic'."

I was shocked. It was not what I expected, and surprisingly accurate for a 3 year old. So my response was simply, "What!?"

In a very attitude filled, "duh, mom" voice she replied, "You know mom, the poles".

I laughed. I laughed and laughed.

And so in memory of those silly moments, this is "Ultimately Us".