Oblivious

Have you ever noticed that children don't seem to feel the heat in the summer or the cold in the winter?  They are completely oblivious to the weather conditions that make us adults miserable.  Same thing with pool water.  I seem to remember noticing if the pool seemed colder as a child, but that thought was fleeting.  It kind of reminds me of Jesus instructing us to have faith like a child.  Just take life as it comes, and trust that everything's fine.  Enjoy life in the now.  Well, here are two little girls who took on a freezing cold kiddie pool filled straight from the hose like it had been preheated to a cozy 70 degrees (ok, I made that number up - I have no idea what comfortable water temperature is).  Rose and Emma had a blast in our latest toy for Emma.  Emma loved it because she wasn't surrounded by a float that got in her way, and the water was shallow enough for her to crawl in.  Rose loved it because all she wants to do day in and day out right now is walk around and see different things.  The large pool and slide were perfect for exploration.  Rose's mama, Sally, DID call her out on one "playground violation" in particular: Rose reeeeally wanted to climb UP the slide.

Russell and Sally only got in up to their ankles at first.  Sally wisely stayed in up to her ankles.  Russell later sat down in the water and is still trying to get the feeling back in his lower half.

"Mom, I NEED to climb up that slide.  And tell MB to get that blasted camera out of my face.  Not cool."

 

Ah, yes, the say-cheese face.  All you other moms, when do they stop doing this and smile naturally?

Emma got in the pool again the next day after a stalled thunderstorm filled it up for an hour.  This made for an even colder pool, but OF COURSE, she didn't mind.  We thought it was a slight problem when her skin started to turn a little purplish blue.  This is when I wanted to be her for just an hour: we gave her a warm bath, threw a soft blanket in the dryer, and wrapped it all around her, which is how she feel asleep in her daddy's arms.  Doesn't that sound heavenly?

Thanks for all the prayers that everyone sent up for Emma at the dentist yesterday.  The dentist himself was wonderful.  Actually GOING to the dentist was not.  Emma was terrified of leaning back for the cleaning and the exam, and I've never seen such sheer terror and fear come over her.  Her whole body was shaking, her eyes were huuuge, and she was panicked.  It was absolutely the saddest thing I've ever seen.  Today she had a follow-up with the opthalmologist, and she was scared of him, too, for the first time ever.  So it appears that the dentist has damaged her.  Great.  We really need Emma to NOT be afraid of doctors since we see them all the time.  The next encounter with a doctor is in July with an ENT when they'll probably shove things up her nose and down her throat.  What do I do until then?  Go around visiting all our doctors so that she gets used to them?  I thought my little girl would never be afraid of doctors since she's done so well thus far.

Before things took a turn at the dentist's office, Emma enjoyed playing in the "park" - the precious little play area in the lobby.  I was trying to get her to look at me for a picture while she was sitting on the tiny bench, but I was rudely obstructing her view of the other children in the waiting room.  As punishment for my rudeness, she refused to look at the camera and looked around me instead.  As Russell would say, I would have made a better door than a window.

On the brighter side of things, Emma's wheelchair came in today.  Now it just has to be assembled and fitted to her arm and body length.  That will happen in a week or two - YAY!!

The doctor I love the most & fear the most

Dr. Troup.  The man is a Godsend.  And I'm scared to death of him.  Well, not HIM, but what he has to say.  More specifically, the conclusion he comes to at the end of everything he has to say.  Emma had a routine visit with him a few weeks ago, and it was pretty mild.  Nothing too exciting, just a lot of cautious question-asking by Dr. Troup and nervous answering by me, trying to figure out just exactly what he was getting at with each question.  Conclusion: barring any unforeseen hiccups, Emma will have another MRI in January 2013 to assess the situation with her compressed brain stem and the giant cyst along her spinal cord.

Emma's choking has leveled out; no better, no worse.  Which means that the compressed brain stem probably isn't CAUSING the choking.  It's not helping matters, but I don't think it's hurting, either.  It's my understanding that the choking would get worse if the compression is causing the problem.  So many of Troup's questions were aimed at getting me and my mom to say, with 100% confidence and in complete agreement with each other, that Emma's choking was getting better, worse, or staying the same.  We agreed: staying the same.  The next issue is the cyst - if it becomes symptomatic, Emma will most likely begin to lose movement in her arms or dexterity in her fingers.  I think my mom is a little more worried about this than I am.  It can be fixed by draining the cyst....assuming we don't miss the signs and it causes more permanent damage.  Now THAT scares me.  But I'm watching Emma become more and more accurate with her fingertips while using our iPhones and iPads, so I think we're ok for now.

You know, let's get the other medical mumbo jumbo out of the way, too.  Emma has had a hoarse throat for the last month or so, and she goes to see an ENT in July.  I don't know what they can do about it, especially since my mom's diagnosis is probably correct:  Emma's constant choking and coughing has damaged her vocal chords.  Hmmmm, if we could only get Emma to stop choking...that's my prayer EVERY.  SINGLE.  DAY.  Join me in that prayer, won't you?  Oh, and while we're all at it, how about throwing one up for tomorrow, Wednesday, at 3:50?  It's Emma's first dentist's appointment.  Yikes.  She HATES having her teeth brushed, so I guarantee that wherever you are in the world, you will hear shrieks of anger and fear around 4:00 tomorrow.  The highly sensitive gag reflex that's so characteristic of spina bifida might necessitate that everyone in the exam room wear protective vomit gear. 

Ok, medical update.  Check.  Boooorrrrriiiiinnnggggg.

As I start this post...

...I don't even know how many pictures and videos are going to end up on it.  Because it's taking quite a long time to upload all the busy things Emma has been up to.

Some of her cute, incorrectly pronounced words are fading into words in which consonants are in the correct syllable, pronouns and "the" precede many of her words, and possessive s's are at the ends of nouns.

Emma is learning how to be a housewife.  I will DIE if she ends up on The Real Housewives of Some-Place-Rife-With-Scandal.   She loves playing with her dolls, feeding them, putting them to bed, putting them in chairs, and checking for dirty diapers (which includes sniffing their hineys, pinching her nose, and saying, "Shoooo").  She also spends many, many hours at her play kitchen at my parents' house cooking up all sorts of things.  Man, she loves that kitchen.  Oh, and she enjoys wiping down counters and mopping with my old play mop.  See?  I'm telling you, housewife in training.

Ok, so she likes housework.  But her true passion in life is technology.  And she uses her manners when asking for it.  This little clip also shows you what she and Daddy do to unwind and snuggle in the evenings, while still giving Emma the independence of the whole couch to herself.

Emma's also doing really well with learning to walk at therapy.  Her biggest struggle is balance, but she definitely has the rhythm of walking down pat.  The next step (which is still pretty far down the road) is to get her walking in a walker like the one in this video but without anything around her waist or under her rear.  Check this out:

Ok, I'm just going to have to break up these Emma updates.  It's late (actually, it's only 9:46, but I feel like it's midnight), so there will be more little Emma tidbits coming up later this week!