Saturday, November 29, 2008

Gotcha Day







Our second Gotcha Day with Gracie!

(photos: Gracie summer 2006 Gracie Thanksgiving 2008)


Two years ago on Thanksgiving, Josh and I were anxiously sitting in our small room in Liberia, feeling no jet-lag, waiting for a knock on our door. We heard some exclaiming in the other part of the Living Water guest house and we knew that our first born daughter was on her way to meet us... "Oh! How cute! She's so beautiful!"

The knock came and... for an eternity, the door was stuck, I couldn't open it... then it popped open and there she was... tiny little Gracie in a stranger's arms... She came to us right away, purring like a kitten in our arms... by the time we returned to the USA 3 weeks later, we were closely attached as parents and daughter. She was like an infant at 3 years of age... today she's complex, full of varied emotions, walking with support, sitting up so beautifully, so engaged with life!

We are so blessed!

Sitting up!



She may be having major side effects to her depakote (dizziness, headaches, stomach aches, insomnia... sigh!) BUT look at this kid sitting up!! Look at her! :-)

If you get tired of play the drum... sit on it!

Friday, November 21, 2008

Home!

We were discharged yesterday afternoon and we're home. While in the hospital Gracie was refusing all meds, gagging on her food and really not eating well. We got home and she eagerly took all her meds and gobbled down some dinner (which she later spit up)... very interesting! That girl is so complex beneath her non-communicative exterior! She must get more stressed out by being at the hospital than we realize. Granted, the meds might be a different formulation at the hospital and taste different, but we jumped through all kinds of hoops to make them taste different and she was just gagging and refusing left and right!

I hadn't seen Ana since Monday and Ana hadn't seen Gracie since Monday. Josh had told me on the phone that Ana was whiny and clingy and insecure and fussing for "Mama" but when I walked in with Gracie, I hardly got a glance, it was "Gaa-cie!!" who got all the attention! It was adorable. They both were kissing each other and talking to each other. All dinner long they passed food back and forth, sharing cups and bites, Ana was even trying to feed Gracie! How sweet! I'll take the back seat for attention if it means that my girls are best of friends!

Gracie still struggled going to sleep. While she has the EEG leads on, she feels very itchy and compulsively scratches her face and head. She was still itchy last night, despite a long soaking bath and hair wash. I was so tired and with a migraine that I went to bed with her on the couch at 8, but she struggled. Now, they all slept 12 hours!! My family was tired! And I got a jump start on the day and got a shower and spent time with God before anyone popped out of bed! Yay!

The summary is that we don't know what all those episodes were over the last weekend - Gracie didn't have any seizures in the hospital, she was deydrated, but just mildly. Her urine didn't grow anything, chest xray was negative for pneumonia, EKG was negative for arrythmia, her pancreatic enzymes were normal, her liver enzymes were up just a bit, but that could be anything... It seems that she's doing well on the new medicines and just happened to get a stomach bug the week that she started the new medicine.

Thank you for your prayers!

Wednesday, November 19, 2008

Still in hospital...

They're not sure what was going on with Gracie. She's starting to look better now and has not had any of those episodes while on monitoring, unfortunately. It's not entirely clear what was happening with her eyes, as she did some strange eye movements here that were not seizures. She's starting to look much better, now off the clonazepam, but still not eating well. We hope to go home tomorrow! I must admit that this has caused significant stress for us as Ana has spent the last two nights with Grandma and I haven't seen her since Monday night, Josh and I have seen each other for just a few tired hours a day, mostly focused on Gracie, and everyone's exhausted.

We just keep remembering that God is sovereign!

Sunday, November 16, 2008

admitted to Children's again

Thank you for all your prayers for Gracie. We are being admitted to Children's - 3 days of 5-6 seizures per day different from her normal seizure, not taking much liquids and no food, and fussiness...

She's exhausted and clearly feeling sick (although right now looks a little brighter and starting to drool again because she's gotten lots of IV fluids and ate some crackers and pedialyte). Her chest xray is normal, cell counts are normal, liver and kidneys and sugar are normal, and only thing ever so slightly abnormal are her pancreatic enzymes. The new medicine that she's on (depakote) can cause pancreatitis. We'll recheck her pancreas in the morning. She'll also get put back on the EEG in the morning - fun times with all those leads being put back onto her scalp! Josh gets that duty... ;-)

So, long story short, we don't know why she's been having 5-6 strange seizures a day. We shall see! We'll keep you posted.

Josh will be spending the night with Gracie - he's been at church stuff all day with Ana from 8am till 6pm, so once he's done he'll head down to Boston to exchange children. I have to work as I am officially starting my first day of REAL employment tomorrow (HORRAY!!) and haven't accrued any time off yet. As always, our life takes interesting turns!

God is sovereign and in charge of all and we are so grateful for that!

Monday, November 3, 2008

Photos!

"Pumpkin photos" are a must in New Hampshire. So here they are, 10 month old Ana and nearly 5 year old Gracie! In the chilly New Hampshire weather with the pumpkins!











This is the closest that we get to dressing up this time of year - Auntie Amanda found this shirt last year for Gracie and it still fits - "who needs a costume when you're already a princess?" :)

Big sis, Gracie, is always taking care of her baby sister.











And little sis, Ana, wants to make Gracie feel better with her kisses like when Gracie gets home from the hospital or is "sick."


Look at this "pincer grasp" on a graham cracker! that's improvement!



Saturday, November 1, 2008

Development

I'm inspired by my friend, Gina's, blog where she put on little updates of what her kids are up to now. There's only so much one can read about seizures! ;-)

Gracie is so tall, approaching 5 years old, wearing 5T (this is the kid who was in 18 month sized clothes at 3 years of age). She's standing with support and sitting much stronger, she's using her left hand in new and better ways and her right hand is opening more and trying to act as a support more. Gracie starts full day preschool in a week! She absolutely LOVES school!

Ana is turning 1 in December and already in 12 month clothes. She's walking, running, falling. Says about 10 words and imitates everything. She does all the hand motions to a rhyme we say about monkeys... too bad all the monkeys get eaten by an alligator... hmmm! That's sad! I'll try to post a video of her doing it - it is most adorable! She's imitating Gracie's yelling, but it comes at as a screech. She's pushing limits, exploring ALL the off-limits areas and things and never pauses for a second. Everyone who is around her agrees that she is the most active child they have ever seen - what a challenge! Her advanced development and intelligence is certainly entertaining and hilarious, but WOW!

Ana is now sleeping in her crib in the other room and Gracie spends some of the night in her bed in the same room with Ana and the rest of the night with us if she can't sleep. Gracie's meds are really affecting her sleep.

Gracie just had a seizure - so sad for her, she looks miserable!

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