Day 6 at home

18 Jun

It’s hard to believe we’ve been home for almost a week now.

Michael left for the NWT yesterday morning, off on the business travel he was originally supposed to be off on when this whole epilepsy craziness started. 

Jade started back at daycare on Tuesday and was very happy to see the staff there again.  And her little friends, too, of course.  The staff have been great about being willing to accommodate her, which is mostly just watching her a little more carefully if she’s doing anything where she might be injured if she lost her balance (e.g. on the stairs) and recording any seizures they might see.  They’ve also been given instructions on how to administer Valium if she has a prolonged seizure.  Cheryl observed that Jade’s epilepsy seems easier to deal with than another kid they had in the group who was allergic to all things dairy, to the point where he’d break out in hives if he got a little yogurt on his skin.  He had to eat his snacks at a separate table from the other kids and they had to wash everything if there were any yogurt/milk/cheese-related accidents.

We’ve had some good seizure days and bad seizure days since getting home; some days she seems to be having little seizures all day long, others there are almost none at all.  As she slowly gets weaned off the Clobazam and moves onto the Volproic Acid, I dearly hope that we’ll see an end to the seizures.  It’s not that they’re immediately dangerous but they’re upsetting.  The doctors told us that as long as we’re seeing these seizures, it means she’s also continuing to have the subclinical seizures they found when they did Jade’s EEG.  (A subclinical seizure is one where there is seizure activity going on in the brain, without any outward evidence of it happening.)  Having seizures all the time means her brain is constantly being interrupted, which could hurt her ability to learn.  While being a slower learner is, from a logical standpoint, not the end of the world, it weighs on me, especially with all the changes she’s about to go through, from weaning off her soother to potty training to moving to a big-girl bed to moving rooms.  I try not to worry about things that might not happen, but this just seems to linger in my brain.

Anyway, enough serious stuff!  We have several hundred photos sitting on my laptop that have to be moved to our back-up hard drive; many of them are from the last three weeks.  I thought I’d share a few of them with you.

Here’s Jade blowing bubbles in the Children’s Hospital playroom.  (No, she can’t actually blow them herself, yet.  But she sure loves those bubbles!)

Blowing bubbles in the hospital playroom

We went to play in some nearby gardens one day when we were allowed to go out on a day pass.  

Out on a day pass

Here’s Jade in the hospital crib, lying across it width-wise. She actually fell asleep with her little feet up on one of the slats.

Sleeping comfortably

“Is it just me, or is it drafty in here?” Jade was so cute in her little mini hospital gown, I was actually tempted to steal it! In this picture we were in the MRI waiting area and she was playing with the toys thoughtfully stocked there (one of the great things about being in a children’s hospital). I’ve also got to mention that they used bubbles to distract her while they inserted the IV into her hand. Bubbles, what can’t they do?

Drafty hospital gown

Hurray! Here we are on the plane on our way home to Whitehorse!

On our way home

On the weekend, we went over to a friend’s house and Jade played with some balloons left over from a birthday party. Since she enjoyed them so much, I gave her a couple to play with when we got home. By the next day they had shrunk down to the size of mangos (hmph, Dollar Store balloons…) and this is what Michael did with them…

Like Mama like daughter

Jade was playing in the kitchen drawers (as usual) the morning after we got home, and she pulled out Michael’s “camel pack”. (For those of you unfamiliar with this, you fill the bladder with water and wear it on your back. You can then suck the water out through the hose instead of fiddling with a bottle, which is handy when you’re biking or hiking, where bottles can be awkward to carry.) Jade found that the hose perfectly mimicked the thermometer used at the Children’s Hospital (where they use the kind where the stick goes under the armpit and it’s attached by a coiled wire to a box). Every day since that morning, she insists on taking her “amp-pre-ter” repeatedly on both sides, and then forces us to do the same.

Jade taking her \

The bladder part is also perfect for “arm hugs” (taking blood pressure).

Dr. Jade taking her own blood pressure

We spent a glorious day out at Fox Lake on Saturday. This was Jade’s best day of all, with just a few small twitches in the morning, and none at all the whole time we were out at the lake. The cabin we went to belongs to Kelly and Nita from the Big Band; they invited everyone in the band to visit them for the day, and we were glad to take them up on it. George the Bass Man loves fishing and was happy to show Jade how to get started. She didn’t catch anything, but George did, and we got to have fresh lake trout the next day. Yum!

First time fishing

Our Fox Lake foray was also our chance to get in the first paddle of the season. Jade didn’t show any signs of falling asleep in the canoe, as she has always done on past canoe trips. She loved being out on the water; after our family paddle she insisted that Michael take her out twice more. Going without me gave her a chance to try her hand at paddling. It’s definitely time to get her a toddler-sized paddle!

First paddle

So that’s our last few weeks in pictures. Hmmm, it’s getting late. I guess it’s time to get off the blog and off packing our lunches for tomorrow. Darn reality!

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14 Responses to “Day 6 at home”

  1. IndyComp0T1 June 19, 2008 at 5:47 am #

    I love the balloon picture! 🙂

  2. MommyTime June 19, 2008 at 8:33 am #

    I love the bubbles picture, and I’m so glad you are all home and enjoying the lake and some family time. I hope the medications get all sorted out for Jade. I continue to send my best. Thanks for the wonderful update!

  3. Carole June 19, 2008 at 9:20 am #

    My favourite photo is of Jade sleeping sideways in the crib. She looks peaceful in dreamland, despite all the equipment and gauges behind the crib. Happy to hear she’s home again.

    Carole

  4. shannon June 19, 2008 at 12:08 pm #

    thank you for the update and the wonderful pictures!!!! lots of love,
    shan

  5. Foolery June 19, 2008 at 12:45 pm #

    Hi Fawn,

    I didn’t realize your family were going through this — so sorry to hear! But Jade sounds like a real trouper, and she is a beautiful child. Also didn’t know you were pregnant (the previous posts I have read didn’t touch on it) so congratulations! Glad you are home, and hope things smooth out a bit for all of you.

    Cheers,

    Laurie @ Foolery

  6. Peaeater June 19, 2008 at 3:58 pm #

    Good to see you home. Did you ever visit the library at the BC Children’s hospital? It’s good. Plus I wrote their library system…

  7. Meandering Michael June 19, 2008 at 10:26 pm #

    Ha ha, Jade and I spent a bit of time in the library – the kids library anyway. I was reading a mystery book and was on the last, crucial twenty pages when it was time to go home. For some reason, they don’t let you take the books out of the hospital. I still don’t know whodunnit.

  8. Marian June 20, 2008 at 12:45 am #

    Thanks for the update….and especially for the photos. They’re all terrific.
    Wishing Jade didn’t have to go through all this and hope they eventually find out what’s causing the seizures.
    Just a thought…after reading Michael’s blog…did they test for allergies?
    Take care of yourself too.

  9. heather June 20, 2008 at 1:34 pm #

    Praying for a fast recovery for your little one. I hope her new meds work out wonderfully!!! I love the balloon picture. And the fishing pic too. just priceless!!!

  10. Shannon June 20, 2008 at 6:16 pm #

    Great blog – I’m so sorry to hear you’re dealing with epilepsy, that must be so scary for you. I hope the new meds will work wonders! What great pictures – fantastic!

  11. McMommy June 21, 2008 at 6:05 pm #

    Oh that little hospital gown!!!

    I’m happy to hear that you all are home and doing good. I think you ALL are troopers!!!

  12. megan June 21, 2008 at 7:56 pm #

    Glad I stumbled on your blog. Your family is beautiful and I hope your daughter continues to respond to treatment. Best wishes!

  13. Rachael June 22, 2008 at 6:02 am #

    Here by way of POW – just wanted to say that Jade is adorable and I’m so sorry for what she’s going through. I will definitely be back for more updates! Can’t wait to browse through the rest of your blog, and hope you’ll come visit me over at http://www.mommylearnstoblog.blogspot.com

  14. Carol June 22, 2008 at 7:21 am #

    Epilepsy can be so scary but it sounds like you guys are dealing with it brilliantly. That’ll be such a help to Jade!

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