Sunday, April 12, 2009

~Happy Easter~

These last few weeks have been busy. Dear Son was off school for a week last week for Spring break and then off for three days this week for school days. He had a terrible seizure on Friday night that really worried me. It kept escalating (getting worse) despite the fact that I was using his Vagus Nerve Stimulator (VNS). I had to use it a few times and the VNS was eventually able to stop it. I am thankful for that device. Essentially, when he has a seizure, you take the magnet and hold it over the implanted device for three seconds. That activates the device and sends a charge (shock) to the vagus nerve and that disperses the seizure. Had that not worked, I would have used Diastat, a rectal valium, which is used for emergencies. If that fails, I call 911.
While I know the procedure, it seems more stressful now that he is older and so much larger. I am not sure why. When the seizure was over, I was sweating profusely. On Saturday, I got him up and put him in his rocking chair and later his glider but he was unable to stay awake in either chair. He could not sustain a sitting position at all which makes it very difficult to move and care for him now that he is the size of a grown man (and still growing!). I eventually moved him to his bed. He was unable to stay awake at all on Saturday and ended up sleeping the entire day. He finally woke up a bit when Dad came to pick him up for an overnight stay.
Overall, we continue to have days every now and then where his seizures are frequent. He might have one day where he has ten seizures in a day and then the next few days things are better. He remains very happy in school though.
Easter is a bit bittersweet for me. While the stores are filled with people getting their kids Easter baskets ready and buying food for Easter dinners, Dear Son can't eat. Even a taste of things is quite challenging at this stage (meaning he can't swallow half of a dime size portion of a smooth food) since his swallowing has deteriorated so much. It doesn't feel very nice when he can't sit at the table-it feels cruel to have him watch everyone eat when he still wants to and yet, he knows he can't eat anymore. He will more often than not, turn away when presented with a tatste. Sometimes though, you know he still wishes he could eat. He gets excited and makes a noise with his tongue. He'll spend the day at Dad's today however their family is getting together at a niece's house and there are too many stairs for Dad to be able to take Dear Son there. I wish things were different for Dear Son. I am thankful for all of my days with him.


On a different note, I thought you might enjoy a few pictures of Easter around our house.

The bunnies on the table with hand painted eggs in a depression glass dish. I thought the dish looked like an Easter basket of sorts. This was the centerpiece until Dear Son knocked over one of the bunnies and knocked his head off. Dad was babysitting and forgot to move the bunnies off of the table. They glued the head on and hoped Dream Mom wouldn't notice. She did, but all was o.k. I changed the centerpiece and made it more "kid and Dad" friendly.

An end table in the living room.

A close up.

Another side table.

The coffee table.

A closer view.

Another view.

The table top of the hand painted chest of drawers.

Another view of the table top.

The breakfast bar looking into the kitchen.

The new table top less the broken bunny.
The new table top.

Have a wonderful and blessed Easter.


Poppy Q said...

Happy Easter Dear Dream mom. Thanks for showing us your Easter house. It has been educating reading so many blogs, as in New Zealand we don't really celebrate the seasons and decorate as many Americans do.

We hope you get to relax on your day off and manage to catch up on a little of all that missed sleep.

Thinking of you, Dear Son and Wiggles.

Julie and Popppy Q

Susan (Between Naps on the Porch) said...

Your home looks so pretty for Easter. I'm praying for some good days...seizure free...sounds like you could use a break and few more calmer days. I admire your strength. You are truly a blessing to your son...and I'm sure many others who know you. Love to you and Dear Son,

Anonymous said...

You know, I was aching as you wrote about Dear Son not being able to experience the fun food of the Easter season - and then seeing your adorable photos made me realize, he probably VERY much enjoys the bunnies and the other thoughtful touches you put around your home. You provide for holiday enjoyment for him in that way, just by the beautiful surroundings he's in - you're so careful to make sure your home is not like a hospital visually, and that has to be so good for him.

Blessings to you all this season and always.


Catherine said...

Food for the eyes is abundant at your house, Dreammom.

Anonymous said...

Hope Easter day was good for you. Prayers for a restful and lighthearted week for you and your precious son.
All Things Heart and Home

browni said...

It was nice stopping by to read your blog. Your Easter decorations are so sweet. Also I said a prayer for you and your son.

Anonymous said...

Such a beautiful home! Mine is torn up in renovation he-ll. My bedroom floor is concrete subfloor (ala highrise).

Hope Dear Son's seizures calm down. Hugs to you!

Berlin Deluxxe said...

I hope your son is doing better :) I was a Vocational Assistant working with disabled adults until we moved, one of my favorite quotes is the one you have on your page:
We don't love qualities, we love a person; sometimes by reason of their defects as well as their qualities. -Jacques Maritain
I am glad I stumbled onto your blog :)

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