"enjoying" a few days quarantined in our home (in fact, Ana is helping me "type" this as she pain-stakingly slowly finds the next letter that I need to type!)... Gracie is much sicker than Ana, but these photos still represent their "styles" in life!
"Mama make a tent??"
Gracie wants to whine or sleep the day away.
But feels better for a few minutes when she wakes up, takes a sip of juice, and I change her diaper.
I got it first - maybe I brought it home from work despite my best efforts to protect my family... It was really awful. I could hardly walk with the pain in my body, the headache, etc.
Then Gracie had a seizure that needed diastat to stop it and my heart sank - she hasn't required diastat in a few months, so I knew that meant she was getting sick. Sure enough, by 2am that night, she had a fever and was miserable, but I was able to get her into the doctor. By the time we got to the doctor, Ana had a fever, although wasn't very sick. So we all got treated together.
Last night Gracie's fever was 104.4 F!!! Wow! BUT, only small seizure activity, nothing dramatic! The Vagal Nerve Stimulator has definitely made a dramatic difference in our lives by suppressing her seizure activity. Now the thing I'm waiting to see is how she reacts to tamiflu which can increase seizure activity. We both slept in the living room so that I could be near her and keep a close eye on her and not bother Josh. She was so miserable that she spent the night alternating between a body pillow on the floor and laying on Mama. Poor baby!
Pray that Josh doesn't get sick! So far so good - I think he may have actually gotten H1N1 in the spring when it first hit, but no way to be sure.
Our lives are full (to overflowing) with sound, especially the sounds of Ana making or demanding music. I have a 1/4 size violin (much too large for her) that she's been too impatient with in the past, but today she tried it out and didn't want to stop! I asked her today if she would rather play violin or piano and she wanted violin every time that I asked her. Not bad for a 22 month old! Of course, she can't just play, she has to sing while she plays, so... that becomes a little interesting!!
She also enjoys playing Auntie Jessi's piano. Turn the volume down though as you reach the end, because the last note... well, it loses all sense of MUSIC and just becomes baby noise!
Then there's Gracie. She started more closely imitating "ga" and "ah" so we have some dinner time fun! :)
I've been working on my role as a home-maker. Josh and I got married after my first year of medical school and I just finished residency last year, so this year has really been my first year to REALLY be the wife that I feel brings the most glory to God. My house is still a mess... but better than a year ago!
Now, I progressively clean out our house with three thoughts in mind, "will I use it this year? Will I need it in Uganda? if not - get rid of it!!!" And I'm busy with the kids, especially Gracie. We're trying to get as much done for Gracie this year as possible since she may not have good insurance after a year from now. New wheelchairs, new braces, new specialists... now she's aspirating thin liquids (likely because of the Vagal Nerve Stimulator which is BEAUTIFULLY controlling her seizures) so I'm experimenting with thickening all her liquids and puree-ing all her solid foods. Today I bought a ton of fruit from the day old cart in the store and pureed it all so that she has juice/sauce to get more fruit intake besides her enormous amount of applesauce that she eats daily. (we single-handedly support the Applesauce Industry!)
Then I pureed summer squash so that I have an easy option for improving her veggie options. All the while, I'm pondering... "how will I do this in Uganda? How will I thicken her foods?"
Any ideas? Let me know! And I'll let you know as I discover how to care for Gracie's special needs overseas.
Gracie got casts put on her legs now 1.5 weeks after the botox and phenol injections to stretch her achilles tendons. She immediately chose bright pink when I showed her the options! My little 5 year old is getting definite opinions! She doesn't seem to mind the casts at all, in fact she stands VERY well in the casts and we're so excited to see how she does with this botox round. :) independent stander and walker some day???