Friday, January 31, 2014

♪♫ Ob-la-di, Ob-la-da, Life Goes On, Ooooooon... ♫♪


video 
This is from almost a week ago.  So he's gotten even more proficient at moving.  But this one makes me smile because he's trying SO hard to get the toy.





 
K's first highchair nap 1-27-14



 
Oh my gosh.  L♥ve!

 
Waiting for her appointment to have her blood drawn.  I've been going to this same office since 1996 and I don't remember a time when there WASN'T this empty dollhouse.  No furniture, dolls, nuthin'!  So it only took me 18 years to think to bring a couple of stuffed animals inside.  Bonus: getting to listen to the conversations between the two toys. I'm not sure who the characters were, (surely not a Mom and daughter), but one kept commanding "Time to go to bed!" and the other defied, "No!  No go to bed!" :-)

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Due to bedroom rearranging the kids are rediscovering some toys they'd forgotten about.  But this especially made me smile.  I love that Hollyn thinks she's playing with her brothers - so she's happy - and the boys can just ignore her and play their own way.

Kieran is aaaaaalmost crawling.  He's not quite getting the traditional form, but gets around through a combinations of wiggles, lunges, army crawls, reaching, toe pushes, and rolling.  And he will get up onto his knees, he's just not sure how to make that do anything for him. :-)  So cute!

Thursday, January 30, 2014

Diagnosis

Hollyn saw Dr. Karr again today.  Although Monday's labs aren't back yet, he feels confident diagnosing Hollyn with acquired Brown Syndrome. 

When she visited with her pediatrician on Monday, Dr. Rampton pulled up the letter he'd gotten from Dr. Karr and let me read it.  In the letter it states the suspicion of the diagnosis.  Dr. Rampton, being unfamiliar with Brown Syndrome, googled it. We looked at the images that popped up, then read about it on wikipedia.  And I thought to myself, how cool is it that doctors can look up information they're less familiar with on the spot these days?  I dunno, it just struck me as pretty neat.  We got to look over the symptoms, etc. together. :-)  And it does sound right.  She doesn't exhibit the other symptoms of juvenile rheumatoid arthritis which is the usual culprit of these eye issues.  Brown syndrome seems to fit.

She needed blood work done though.  I was NOT looking forward to that part.  When asked how I thought she'd do - because they were considering sending her to The Clinic where they have a more extensive lab and are used to drawing blood from children - I responded I was sure she'd cry and probably move and/or resist.  Well, I was quite wrong.  Not only did she not cry, or resist, she didn't even jump.  She didn't.even.blink!  She watched in fascination as the needle was inserted and the blood started to be drawn.  But it gets better.  When that site stopped getting any more blood out of it, they tried on her other arm.  THREE more times, but nothing was coming out.  Each time she didn't budge at all as she was poked.  At that point, though she did get pale and started whispering something, sounding distressed.  They removed the needle and she started to throw up.  A few minutes later and with a different technician (the one who usually does the little folks there) she got one last poke.  This time the rest of the blood was drawn.  And she paled again and started to whimper.  But she still never moved.  Hollyn was the absolute poster child for blood draws.  She did better than I've ever done!

Aaaanyway, that's where things stand.  We're hoping this episode will resolve like the last one.  If it doesn't (sometimes they don't) she would probably receive treatment where Dr. Karr would either manually move the eye where it belongs, or perform a corrective surgery.  Hopefully it won't get to that point, but at least there are things that can be tried/done.  Once again I'm so thankful for modern medicine!

P.S.  I remember a while ago writing about how we go a long stretch with no Dr. visits, then all of a sudden all my kids have things go wrong at once as we're seen twice a week for different reasons.  Well, after getting home from Dr. Ramptons on Monday I found out that while I was there Brennan in the mean time was in the office at school with an earache.  Of course he'd get an ear infection now.  And Kieran has an appt next week himself.  Sigh.  Parenthood!  Am I right?

Saturday, January 25, 2014

The 'Eyes' Have It

I think I blogged about Hollyn's eye situation last November, but I'm too lazy to check and see what I wrote, so I'll recap.  (That's WAY less lazy, right?)

Last May thru August Hollyn's eyes started not tracking together.  Specifically, her left eye often wouldn't move when it was supposed to, but her right eye was fine.  She was referred to an eye specialist at Oregon Health Sciences University (OHSU) but couldn't get in until November, 3 months later.  Well her eyes were already going back to normal around the time I MADE the appt, so it was long ceased by the time she was actually seen.  The specialist, Dr. Karr, told us he wanted to see her if it started happening again WHILE it was happening - so to have her squeezed in to his schedule. 

That brings us to this month.  Last week it started again.  Dr. Karr's booked solid through April, but I got her in.  And [thankfully] the problem is/was still going on so Dr. Karr could actually assess it.  And the verdict is...

we still don't know.  Like he told me last time, the occurrence seems to be a result of inflamed joint muscles behind her eye.  And the usual cause of this is juvenile rheumatoid arthritis.  However, since she lacks the other symptoms of that, he doesn't believe that's the problem.  So the question is, what IS causing it?  Dr. Karr says it's VERY unusual for this to happen.  Like, she's the first child he's seen with this occurring inexplicably this way.  The assumption is that she has some inflammatory disease, but we don't know which.

Before we left OHSU we were sent for Hollyn to have an ultrasound done of her eyes.  Nothing suspicious showed up (like a cyst or anything), at least within the range of the ultrasound.  There is the possibility of Hollyn getting an MRI, but since she'll need to be sedated for that, it's not being planned at this point.

So the next step is that she's been referred back to her pediatrician for blood tests and "the works" kind of physical.  Dr. Karr wanted her seen pronto for that while the symptoms persist.  There's not much we can do outside of a flare-up.  She's being seen Monday for that, although today I only saw her eyes go wonky ONCE, and it was very briefly.  If the flare-up is already ending it will be very frustrating in a way, although that sounds bad since obviously I want her well and healthy.  Anyway, that appt. is Monday, then she has a follow up in Portland on Thursday to discuss the results.

Pretty crazy.  I'm not especially worried.  She isn't in any pain that she's voiced.  She clearly wasn't in pain as Dr. Karr felt and tested for that in either eye.  Her vision during a non-flare up showed to be great, and even the vision test last Thursday during a flare-up was fine.  She can still see out the eye despite its movement limitations.  So I'm not panicking.  Although it does sound a little concerning to hear your daughter has a "disease".  At this point, we 're just hoping for answers so we can know what to do about it.  And my bucket list now includes finding/getting to AND leaving the Casey Eye Institute without getting lost or off track.  That place is C-R-A-Z-Y hard to find.  You literally weave through old neighborhoods and turn onto roads that look like driveways leading to a private home in the forest.  I can't believe it's the way to get to this place and Doernbecher Children's hospital of all places!  And extra points if you can get back onto I-5 without stumbling through downtown Portland twice.  Anyway, I may be in for some frequent trips to Portland for the next little while.  Adding that to my schedule is not very easy since all three other kids need babysitting at different times (A and B get home from school 4 hours apart).  But here's to finding answers!

Wednesday, January 8, 2014

Problem Solved

A couple months ago I noticed Hollyn starting to stick her finger in her nose, then immediately into her mouth.  Seeing that it was quickly becoming a regular occurrence, and fearing that once a solid habit it would never be broken, Brian and I knew we needed to try to nip it in the bud.  We tried to really hit it home with her with the typical phrases she could understand like, "that's yucky!", "no, no", "don't eat that", etc.  But nothing was working.  Once she even fought me as I tried moving her hand down and she used her might to keep going.

I thought it might be hopeless.  Then one day in desperation I told her, "Hollyn, that's yucky.  It's OLD."  I said that because while trying to think of synonyms for yucky, I had a thought about how she won't drink from sippy cups that we tell her are old.  And she's even used that reasoning herself when she didn't want to drink some water that had been prepared an hour or so earlier.  So when I used that word regarding her nose-picking, her eyes got really big.  "It's old?" she asked.  "Yes" I told her.  And that was the end of that.  A habit that had been occurring regularly throughout the day for over a week has not happened since that conversation.

So, just so you know, if Hollyn ever tells you that you're old, never worry.  It only means she thinks you're gross. ;-)