And the STORM marches on in!

posted in: Kodiak My Little Grizzly | 11
He also was hitting his knee to his right eye and cheek bone. It's all red!
He also was hitting his knee to his right eye and cheek bone. It’s all red!

Well I’m guessing if you are brave enough to follow this blog you probably already know by now what my title means.  It’s a cold hard fact that storms affect my little grizzly. But how? He can’t see or ear!

This is what happened at 2:30 am this morning.  BANG! BANG! BANG! BANG!….. I yelled

“What is going on?”

Colt yelled back “Kodi won’t stop banging his head against his bed!”

I got in there and he had been hitting it hard on the bunk bed frame.

Colt jumped down out of the top bunk trying to stop him.  This took a bit because first he actually had to wake up, then realize what was going on and then carefully come down his ladder.

Kodi was crying. His head felt spongy. Breaks my heart! Poor Colt sat there with his hand on Kodi’s back trying to wake up.  We put his blankets back on and then Colt climbed in next to him for a while. I really don’t know what to think.  Well, I do, but I go back to the things that sometimes help. But now several times today he suddenly started crying out of the blue.

I also know that now his little head must hurt from hitting it so hard.  But he also just does not feel all that well in general.  It’s cloudy today and we are now under a WINTER STORM WARNING for our area.  This is what I figured.  He will not feel all that wonderful now until we are nearing the end of the storm. Looks like it won’t let up until Monday sometime.

Here’s what the facts are:

Fact: Kodiak has a normal shaped brain with an abnormal shaped skull.

Fact: Kodiak has scoliosis. Not all feel pain but the ones I have talked to feel achy to pain when weather systems roll through.

Fact: Kodiak has instability in his neck.

Fact: Kodiak has on some level eye pain. Not that all DeafBlind people feel eye pain. But he does.

Fact: Kodiak has sinus pressure issues.

My theory:

I think the kid feels total complete body aches and pain, specific pain in his head ranging from cranial, to eye to cervical area of head/neck. Now add the fact he also has scoliosis. I’m sure he feels back pain. We are also looking at the whole sinus pressures he has.  Any one of these issues would put any one of us down and out if the weather made them worse for us.

I had a friend that I talked to this am and she had a headache today.  As the evening progresses I have pain in the back of my eyes that has been getting worse.  Like I just want to close them and go to sleep.  Granted, it could just be that I’m so tired but I also have an achy feeling in my upper back where I hurt it earlier this week. I have to use how others feel to guess. But in reality he kind of is telling us.

I was on the floor this afternoon and he came and hugged me.  Then he got down on the floor and kept slamming his head on the floor. You just can not safely stop him. The head massage only worked for a very short time… He needs Papa here with his stronger and thicker fingers.

Eye's are red from crying and hitting. it's time for drops.
Eye’s are red from crying and hitting. it’s time for drops.

Now I think if any one was feeling this bad we all could agree that a hot tub, massage or something like this would be very soothing. After supper and after Kodi was acting restless and frustrated I said “Let’s go get your bath!”  So began my routine to help him go to sleep and hopefully stay asleep and feel less pain for as long as possible.

He must have felt like he was on clouds laying on Symone's bed
He must have felt like he was on clouds laying on Symone’s bed

He was not giggling as usual during his bath (it was very warm) But he did try drinking the soapy water. He quit crying and was cooing instead.  I kept it short because it was a hot tub temperature.  Then came the lotion massage along with putting on his PJ‘s.  Symone then gave him his meds and he drank a ton of water. Twelve ounces of water to be more exact.

A few little halfhearted giggles.
A few little half-hearted giggles.

She took him in the bathroom to brush his teeth.  He at that time was giggling.  The vibrating of his toothbrush always makes him giggle.  Then she gave him another drink.  He downed another 8 ounces of water.

Then he rested under warm blankets on the couch.  He is cooing and not crying. It’s now 8:17 pm and I feel he will fall asleep very soon.  The huge question is for how long and as he cuddles next to his big sister did we make it bearable?

I’m only hoping we hear ZZZZZZZZZZZZZZZZZZzzzzzzzzzzzzzzz’s from a hibernating grizzly very soon.  It took all of us today to help him feel better.  He love’s the attention but he also is trying to tell us he hurts. One of those ways is by head butting and he got Colt in the nose… 🙁

This is such a sharp contrast from last Saturday.  We had so much fun chasing all the hot air balloons.  Oh! Well maybe tomorrow I will get some really cool winter photos.

WE ARE HUNKERED DOWN READY TO RIDE THIS STORM OUT.  BUT FOR NOW WE WILL GET HIM TO SLEEP AND THEN GO TO BED OURSELVES! 🙂

11 Responses

  1. He was so funny when I was brushing his teeth. He just kept giggling. And then he wanted me to hold him…

  2. Goodness ~ hope the storm passes quickly and he’s feeling better soon.

  3. Hearing how you care for you son warms my heart so much…..

  4. I find it fascinating how you read his body language, know he’s hurting and do such soothing things to help him. I know what it’s like to be a barometer — but not to that degree. Patience must be challenging for all of you as you try to figure out what is going on.

    • What baffles me is all these humans walk around but no one does scientific research on why the barometer affects some so badly… The full moon as well and doctors look at us like we are just crazy… But I have documented it and continue to do so and that is one reason I put in those details…
      Thank you for noticing just how much we try to read him… We have had 10 1/2 years practice… 🙂

  5. I hope all of you had a restful night and today is a geat one.

    • We did all get a good nights rest. Kodi is just sort of blah today… We are getting rain, freezing rain, sleet and snow… I guess that’s why they call it a WINTERY MIX! 🙂

  6. Teresa Dafft

    My son is 22 years old and deafblind. he also has a mitochrondrial disorder, seizures, scoliosis and a spastic quad. try a little peppermint essential oil at his temples, this helps with headaches and sinus issues. always seems to help my son travis.

  7. I am armenian and live in germany. I come across your blog by chance and read a few of your postings. I admire you and your husband, you are great parents for your son, Kodi. I hope science will heal Kodi’s illnesses as soon as possible.