Tonight we took the kids to their very first concert at the Scera Shell (We wanted to break them in easy). It was a group called "Arrival" that performs ABBA songs. We got all gussied up and even put on some glitter (everyone but Daddy-o). Aub came with us, and it was lovely. Brothy and Sis LOVED it. At first the loudness kind of freaked them out, but when they saw everyone singing and cheering and dancing, they decided it was pretty cool. It is so funny to watch them pick up on social cues.
So, we spent the evening at Mosida Lodge with JT's grandma's side of the family. We don't get to see them too often, so it is always a treat, and you can't beat the location. Honestly, Elberta is pretty happening. The kids enjoyed covering themselves with watermelon then playing in the sand. Note: sand in Brother's hair is not so easy to get out. After a couple of washes and comb outs I think we got about 2/3 of it.
The biggest challenge now is that she is convinced that she can't do anything on her own, which is so weird for her. She is usually so independent, and motivated to be involved in everything. Now it is hard to get her to want to do anything more active than coloring or sitting on the floor with toys.
We had a barbeque today with JT's dad's side of the family which was very fun, but super hot. She was just clinging to me the whole day. Finally, she decided she wanted to play on her slide, and I was really surprised at how well she could still climb up the ladder. Her walking is pretty crazy, but it's hard to say whether that is because her brain is weird, or she doesn't have much strength anymore. We hope to start physical therapy this week, which should help us know how to help her.
So, thank you, thank you for all the prayers and love and support.
This weekend and the coming week are full of family parties with JT's side of the family, which we are excited for. It's so good to hang out with his mom & step-dad and dad & step-mom and siblings.
Here are a few recent pics:
I whipped this up one night to use to introduce ourselves to possible caseworkers (foster care) or birthmothers. It has a few issues, but it's pretty dang cute. I can't wait to see Sister running and playing like this again.
Hi, everyone. This is Heather. We're home--hurray! Sis and I decided we don't really like having sleep overs at the hospital. Next time we're voting for somewhere with a spa or even a tent or cabin. Just somewhere where they don't wake you up every couple of hours to poke and prod you in the middle of the night. We did, however, get to watch Barney and Mary Poppins and visit with my Aunt Kate who surprised us with a visit and an awesome care package.
So results are in from the protein test of the spinal fluid. They don't think that it is Miller Fisher. They did send a sample off for the antibody to make sure, but that will take a couple of days to a week. The neurologists are back to thinking it is post-viral Cerebellitis.
So... we're going to start physical/occupational therapy sessions tomorrow morning.
Posted by JT 3:59 PM
So, back in the hospital, Sis is sleeping very soundly. She was sedated so she could have a lumbar puncture/spinal tap to do a test on the fluid to test the presence of a protein and possibly an antibody.
We're thinking the results will be back in an hour or so.
We'll keep you posted.
Posted by JT 2:07 PM
Well, things didn't really progress with Sissy like we thought they should, and between Heather's mother intuition and the neurologist's promptings, we've decided to re-admit Sis so we can get a test done to hopefully figure out what she really has. We all think she has Miller Fisher, but it might not be that after all. Since she's not getting better very quickly, we're hoping that if it is Miller Fisher, that we can get treatments for her to speed her recovery.
It's tough to watch our little girl who so recently was running, laughing, playing and getting into mischief lose a lot of coordination--so much that she can't even crawl, or feed herself very well. We're hopeful that these treatments will help her get quickly back to her normal self.
So, I know I left you all hanging yesterday, but the jist of it is, we all slept in our own beds last night in our house. The kids and I slept for about 12 hours. w00t for catching up!
The little longer version is that about an hour after they told us about the MRI results being clean, another Neurologist came in and said essentially, we don't know exactly what it is, but we know all the bad things that it isn't. They told us they could do a lumbar puncture and drain some fluid to do a test to see if it is a different condition called Miller Fisher Syndrome. This Miller Fisher Syndrome has very similar characteristics, and like Post-Viral Cerebellitis, will go away in time with no medication or treatment, although there is a treatment. But to do the test we'd need to stay another night, because Sister would have to get sedated again. And if we wanted to get treated they have to give it via IV, and she'd have to stay another four days. :(
So since Sister already had shown improvement, we felt like she'd be better in a few days like last time. As I research into Miller Fisher, it may be up to a few weeks, though.
Anyway, I just wanted to pass on the good news that we're home, and although she is still wobbly, she's gonna be fine.
Thanks for all your collective love and support.
So, amidst the best sleep I'd gotten in a few days, one of the Neurologists knocked on the door to tell us that the results from the MRI look completely normal, and there are no tumors, lesions, strokes, clots, monkeys, or bananas on her brain stem, cerebellum or cerebrum.
So they may want to still do a few more tests to see if they can figure out the type of virus that caused the Ataxia, since it's very rare for someone to have post-viral ataxia twice.
So, we might be coming home tonight, or they may hold us over in order to do a lumbar puncture to drain some spinal fluid to do some tests on it.
Anyway... good news. No tumors. :)
We'll keep you posted.
Posted by JT 2:48 PM
I just poked in real quick to give a status update. Sissy's doing ok. She just went in for her MRIs about 20 minutes ago. I'm not sure why, but they're giving her two; a lower and a higher resolution image.
So far all the bloodwork they've done has come back normal, so we're waiting on the results from the MRIs and the additional blood tests.
It's kind of just a waiting game at this point. We're still encouraged at every step that it is just post-viral ataxia, in which case, she'll get better on her own in a couple of days. We'll just wait and see if anything else turns up.
Since the MRI's are so late in the day, it looks like due to the pace of the Hospital Machinery, that Sissy and Heather will be here another night. :(
Thanks for all your words & prayers of comfort. We appreciate all the positive vibes being released into the Universe on our behalf.
P.S.: I'll try and include some pics next time.
Posted by JT 12:18 AM
So, don't be too alarmed, but our little Sister has a nasty case of Ataxia (info here and here) which is likely the post-viral kind. Because of her symptoms, and at the prompting of our pediatrician, we took her to Primary Children's Hospital ER so she could get the full work-up.
After getting in there, and talking with a couple of Neurologists, they felt like it was best to admit her to the hospital so they could get an MRI scan and run a bunch of tests.
So Heather is there with Sister, and I'm home with Brother. He and I will likely head up there tomorrow to spend the day with the girls. We think it will do the kids good (as long as we can get them to take naps) to play together and be as normal as possible. I think it will especially help Emma keep her stress levels down. She's not very happy right now. She hates the phlebotomists and cries whenever she sees them.
So, it's likely that all will be ok and she'll get better in a few days, so don't get your undies in a twist quite yet over Sissy's health. :) We're pretty sure everything will work out ok. We're lucky & blessed to have good health care.
We'll keep the blog updated with info, so you can get all the latest right here. We'll likely be tied up most of tomorrow with procedure and minutiae, so we won't have a ton of time to be talking with everyone on the phone. :) You're welcome to subscribe to the blog via email and/or ATOM feed to get updates as soon as they come out. If you don't know what ATOM is, use email instead. :)
Ok, so two-year-old kids aren't supposed to have a developed sense of humor, right? Hmm... I'm not so sure of that one. Consider this exchange between me and my two about-two-year-olds.
Dad to Brother: "Who's yo' daddy?"
Sister responding for Brother: "A booger."
If I wasn't there, I wouldn't have believed it myself.
Some people's kids...