ABBAlicious 24th!

Posted by Heather , 7.24.2008 11:45 PM



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.



One thing about Bro. is that he has BEAT.  During "Fernando" everyone was waving their cell phones and he started to wave the chip he had been holding for about a half hour.  He was enthralled.  Sis.  especially loved the songs when everyone stood up and danced like "Take a Chance," and "Dancing Queen." When we got home we told them to tell Aubs thank you for taking us and they repeated "tank you" over and over.  Brother was still mumbling something about "tank you" when we put him in his bed.  Thanks Auntie!

I thoroughly enjoyed the entire experience, but then again...I love ABBA.  We sang. We danced.  We ate treats.  It was great.  And, you should have seen the crazy costumes.  They had exact replicas made of ABBA's original costumes and they were something else.  Basically a whole lot of white spandex with gold embellishments.  The one guy's outfit reminded me of something Scott Hamilton would have worn in the late 70's.  NICE!

All this excitement kind of made me want to go see "Mama Mia."  Although it wasn't nearly at thrilling as the American Idol concert a couple of weeks ago, it was fun to be together, thinking about the pioneers while we rocked out to some wanna-be Swedes.  I'm sure Brigham Young would have approved of such an enriching and uplifting cultural event.  

P.S.  Sis continues to improve slowly.  She still needs help to walk, and she has picked up on this obsessive whining act when she decides she wants something that nearly drives us all crazy.  But, we are thankful for the progress she is making.  Yesterday when she was walking holding my hand I cheered and told her how good she is doing and that she is getting all better.  She got very thoughtful when I talked about how she used to be in the hospital and now she is doing so great and she said, "bana (interpreted:bandaid), hurt."  So, she knows something is up.  And she has NOT forgotten the hospital.  If we could only track down a local physical therapist that works with children recovering from a neurological illness that accepts our insurance and can get her in sooner than 3 weeks.  Uggh.  Let me know if you know anyone.

Fun at Mosida Lodge with the Crazy Lebarons

Posted by Heather , 7.22.2008 12:46 AM




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.  


Sis continues to improve.  Today she did quite a bit of assisted walking.  She seems to be getting bored and more motivated.  We are overall doing very well!


Slowly but surely

Posted by Heather , 7.19.2008 11:03 PM

Hi, I just wanted to give a little Sister update for all you family and friend that have been praying for us. She is definitely improving. She is able to sit up pretty much all day and her hand and arm coordination is much improved. Her eyes are also pretty much back to normal, no more staring off into space, going cross-eyed, etc.

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:

Waiting to go home at Primary Children's

Dr. Sis

Coloring with the fishies.

Getting a care package from cousins!! Hurray!

Note: These pictures were taken over 2 days. Sis can actually wear the same outfit twice when she doesn't do anything. I would rather do more laundry, but I'll enjoy any perks that come along with this crazy ride!

A Little Video Introduction

Posted by Heather , 7.18.2008 11:26 PM

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.
video

We're home..again.

Posted by Heather , 7.16.2008 10:37 PM

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.


Can I just say that Sissy is a little trooper?!  She did so well.  She was actually laughing and joking with all the nurses and doctors...until she woke up from the spinal tap in pain.  Then she pretty much was ticked at everyone the rest of the time, which I can't blame her for.  She is still pretty sore, but the doctor said it should stop bugging her in the next couple of days.

So, we still don't have a definitive diagnosis.  We know a whole huge list of things it isn't.  Some of them are very unpleasant...like tumors, lesions, meningitis, etc., etc.  The list of what they think it might be is pretty short and none of the possibilities come with any way to treat them.  Most likely it is post viral cerebellitis.  The doctor explained to us what that means is you get a plain old virus of some sort, like a cold.  Your body responds by making a whole bunch of antibodies to fight the virus.  Sometimes when the virus is clearing up, but you still have all these antibodies running around looking for trouble, they see something that they mistake for the virus.  In this case, the cerebellum.  They attack the coating around the nerve cells, generally messing up traffic.  The cerebellum is what controls the muscle coordination needed for balancing, walking, using your arms, eye movement, etc.  That is why Sister seems so drunk.  Her brain is being attacked by her own immune system--probably.

There is a very very slight chance that it may be genetic.  Some people are just wired weird and will have bouts of episodic ataxia throughout their lives.  Similar to post viral cerebellitis, there is no treatment.  You just have to wait for your brain and/or immune system to sort things out.

We are hoping that she snaps out of it quickly so that she doesn't lose too much muscle tone and developmental milestones.

The plan is to just try to live as normally as possible, trying to help Sister find her legs and arms and anything else that has come up missing in her little noggin, while not neglecting Brothy too much.  He has been such a sweet big brother.

Today I cut up a bunch of watermelon and Brother kept asking for a piece.  I would give him a piece then give him a little piece to put in Sissy's mouth in the family room.  She was laying on the floor, waiting with her mouth wide open like a little baby robin.  He faithfully would walk in and plop the watermelon in her mouth. Until the end when he started forgetting that he was taking it to her and accidentally shoved it in his own mouth.  He gives her lots of kisses and pats when she seems sad.  

JT bought the kids a little doctor set and they spent about 45 minutes before bed checking each other and Mom and Dad and their baby and frog out with it.  We all appear to be in generally good health.  Brother and Sissy are actually opening their own clinic.  So let us know if you have any dolls or stuffed animals with any ailments.  They charge a very reasonable co-pay and they accept all insurance companies.

So, we're good, a little sleepy and wobbly, but happy and thankful.  As a parent, you go through a weird roller coaster ride when you think your child might be permanently damaged, or in potential danger.  It's like a mini-grieving cycle or something.  I am so impressed with our friends and family members who parent children with significant health concerns.  What faith!  I have a long way to go.  

Thanks again for all the prayers and support.  We are so blessed to have such awesome family and friends.  Love,
Heather

Results back.

Posted by JT , 7.15.2008 4:17 PM

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.

play-by-play

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.

Back in Primary Children's

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.

We're home!

Posted by JT , 7.12.2008 10:43 AM

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.

MRI results are back

Posted by JT , 7.11.2008 5:20 PM

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.

Cool.

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.

Friday lunchtime update

Posted by JT 2:48 PM

Hi, All.

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.

Loves...

P.S.: I'll try and include some pics next time.

Sissy's in the hospital.

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. :)

Overheard at our house: Who's your daddy?

Posted by JT , 7.06.2008 11:57 PM

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." <giggles>

Brother:
<Laughs like he understood the comedic value of Sister calling me a booger>

If I wasn't there, I wouldn't have believed it myself.

Some people's kids...

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