Brought to you by an unsecured network

20 Mar

Someone left an unsecured network open, but the signal is patchy, so here’s the bullet-point update:

  • Jade is doing much better.  She had a lot of drop seizures today, but had a dramatic reduction of the other types.
  • Michael and I are pretty convinced that the last change in her diet changed the way her body metabolizes Valproic Acid (anti-seizure medication), causing toxicity, and thus more seizures.  (Ironic, no?)
  • The neuro (not Jade’s usual neurologist) suggested HALVING the Valproic Acid before Jade even left for Vancouver.  He didn’t think drug toxicity was the problem, but didn’t see a point in her continuing to take it, since it clearly doesn’t help her.
  • The rest will be weaned tomorrow.  This is an extreme weaning schedule.  It makes me nervous… but excited at the same time.
  • Jade was fasting all day today to try to “jump-start” things again.  This neuro says we don’t want to see just incremental improvements, we want dramatic results.  Goodness!
  • Jade will be under observation over the weekend.
  • Because of the end of spring break here, Michael and Jade can’t come home until Wednesday because all the flights are booked up on Monday and Tuesday!  (I don’t get it, though.  School STARTS on Monday — what are all these people doing still away?)
  • Halia and I have been making the most of each others’ company.  We got to visit with Richard and Marusia yesterday, and meet their new little guy for the first time.  Today we ran errands all day long, exhausting us both, but it means we can enjoy a quiet day at home tomorrow.
  • I finally took Halia to get weighed and measured today, for the first time since she was born.  Stripped down to her birthday suit, she weighed in at 15 lbs 7 oz and measured 66 cm.  I believe that puts her over the 90th percentile for both height and weight, so when I lift her and think, “Oof!  This is a big girl!” I’ve really got it right.

Thanks so much for all your messages of support — I was able to get online very briefly last night and read them, and it was such a comfort.  I will continue to update as patchy, ill-gotten Internet connections will allow…

Advertisements

14 Responses to “Brought to you by an unsecured network”

  1. Tine March 21, 2009 at 1:31 am #

    Thanx for keeping us up to date !!

    I keep thinking of you, & hoping things will turn out allright, after all 🙂 …

    Take care !!

    ♥ ♥ ♥

  2. Jenny March 21, 2009 at 3:06 am #

    I’m glad to hear she’s doing better and glad to hear they’re doing away with the valproic acid. Hopefully you won’t have any side effects from that. We only saw improvement after getting rid of it. At a higher dose that crap made Naomi’s seizures almost violent! Not only would she drop she’d fall to her bottom and it would throw her back and she’d roll so her feet almost came over her head!

  3. Marian March 21, 2009 at 3:38 am #

    Thanks so much for the update, Fawn. We’ve been wondering (worrying) what was going on.
    Hope you have a good rest today.
    Love and hugs.

  4. Kellyn March 21, 2009 at 4:39 am #

    I am so glad that she is doing better. It must be so freightening. I am keeping you in my thoughts!!

  5. Indigo March 21, 2009 at 6:36 am #

    You are a marvel. Thanks for the update, first thing I looked for this morning. Oh I am so keeping everything crossed that still works on me, for the new jump start dramatic change to be true. You know, a few extra days in Vancouver is not a bad thing, if it means Jade wil be monitored for a bit longer after the big changes in diet and medications. Peace.love.hugs.prayers.

  6. Gen March 21, 2009 at 10:29 am #

    What a brave little girl you have. Bless her and you.

  7. Jan March 21, 2009 at 11:39 am #

    Don’t fret the med wean. We had to stop Lamictal cold turkey with Hannah and everything was fine. I was terrified, but it was perfectly fine. I’ve been sending lots of prayers your way!!

  8. Marie March 21, 2009 at 7:33 pm #

    I’m sorry to hear that Jade has been having a rough time lately. We have had a lot of problems with the Depakote/Valproaic acid and the levels in Grace’s blood. The same dose has led to levels ranging from 39 to 150. We found that the keto diet seems to have helped Grace metabolize the Valproaic Acid more consistently – and at a less toxic level. I’m sorry the same is not true for Jade.

    The Valproaic Acid toxicity is rough. Grace gets tremors and has balance issues – we often confuse it with seizure activity. It has also reacked havoc with her blood counts. One of the reasons we started the diet was to get her stable enough to start to wean the Depakote.

    I am so happy to hear that Jade is doing better and stabilizing. I hope she will be home in your arms and in her own bed shortly.

    Keep all of your old recipies that worked at one point and stopped working. We find that Grace goes in cycles. There are some things that she loved for a while and then seemed to tire of. Weeks later, she would be back to liking it again.

  9. Barbara March 22, 2009 at 7:43 am #

    I am glad to hear Jade has improved, too. Just as glad you have good medical support.

    For all that lifting of Halia, look up the best book I can recommend: Overcoming Back and Neck Pain by Lisa Morrone, PT. (Before pain starts.)

  10. maleesha March 22, 2009 at 6:25 pm #

    What a roller coaster. I think the more stressed out we are, the heavier babies feel. Fifteen pounds already is awesome! I bet it feels like thirty at the end of the day. We are happy that our Macy is walking all over the place and prefers it to having us carry her. Yay!

  11. Lindsay March 23, 2009 at 10:38 am #

    Thank you for the update. We’re thinking about you 4 all the time. Lots of love.

  12. Tricia March 23, 2009 at 11:22 am #

    Hi Fawn

    I saw a post on Nem’s facebook about Michael and Jade so I thought I would check out your blog (which I haven’t read in a very long time due to motherhood in general).

    I know we haven’t met, but if you are at all like your sister (which I think you probably are), I know that you and Michael must be the best kind of people. I was saddened to hear about Jade’s epilepsy. She is so lucky to have parents who are tech saavy and willing and able to research treatment options. Our thoughts and prayers are with you all and with Jade! If you ever need a place to stay in the Toronto area, our doors are open to you.

    Sincerely,
    Tricia Cole

  13. Reid McKinley March 24, 2009 at 4:08 am #

    Fawnahareo,
    I’m sorry to hear about all of the seizure activity. We have been through similar circumstances with our son (ncmckinleys.blogspot.com). The daily onslaught of seizures takes a toll on everyone. We will pray for you and your family and that you find seizure freedom for your dear Jade very soon.
    Wishing you all the best,
    Reid

  14. Lindsay Heynen March 29, 2009 at 7:28 am #

    Hey Fawn,

    I heard that Sandi is going to be helping out with Jade and that is great. Sandi is a great nurse..

    Lindsay

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: