Deja Vu

For such a long time, Emma has been making a lot of forward progress.  I had forgotten what it was like to take some steps backwards.  Unfortunately, that feeling has crept back into our lives just a tad.  We were reminded at the end of last week when she was sick - besides the normal-kid fever, excessive sleeping, crankiness, etc., Emma stopped eating regular food and really could only tolerate a bottle.  So we made all this progress with food...and then she would only take a bottle.  But, praise God, we're back to eating regular food again.  Not much of it, but some.

Emma feels great again - maybe a little sluggish still, but she is much more herself now.  She felt good enough for us to take her to the Clemson game on Saturday to tailgate.  Our friends Rob and Holly tailgated with us, and we got some great shots of Emma loving on Mr. Rob.

As Emma got used to being around Rob and Holly, she didn't want Holly to stop holding her.  It takes Emma a little while to warm up to people, but even then, she still doesn't whine for them to hold her like she did for Holly on Saturday.

Emma also got to meet Corrie - she is my mom's college roommate's daughter.  Corrie and I think we've met once, like, in the 80's or something...so I don't really know if that counts.  Sweet Corrie was SO excited to meet Emma.  How blessed am I that someone I haven't seen since I could count my age on two hands is so excited to meet my daughter?!

Speaking of counting ages, Russell turns 30 on Tuesday.  I am 9 months older than Russell, so I always have to put up with the jokes from him about how much older I am.  If anyone knows both me AND Russell, it's no surprise I'm older.  Not because I act like an old dud, but because Russell is a 9-year-old trapped in a 29-almost-30-year-old's body.

Today I helped host a baby shower for my dear friend Holly (different Holly from above).  Her baby is due on 11/11/11 - how cool is that?  She and her hubs are not finding out the sex of the baby; if we hadn't just taken on the expenses of moving and new-home renovation, I would absolutely pay for a 3-D ultrasound just for my own sake.  Holly said I could.  I think that it is a peripheral bonus for Holly that not finding out the sex of the baby is torturous for me.  Very funny, Holly.  Just remember, what goes around comes around.  Just kidding, I love you.  A whole lot.  Here are some great pics from your shower :)

Alright Baby (Girl) Sharp, the ball's in your court now.  Man, I hope it's a little girl.  Little boys freak me out a little.  Of course, if it's a boy...I couldn't think of better in-laws than the Sharps for my sweet Emma, hehe.

We made it 19 months

Emma just hit 19 months old the other day, and we had made it that long without a fever or respiratory illness.  We've paid our dues with those first three months in the hospital, but with everything we've had going on, it's been so nice to not have to deal with fevers, infections, viruses, etc.

Until now.

Emma had a bladder infection a few weeks ago, which we treated with antibiotics.  It turns out she has another infection.  I'm hoping it's the same infection that we just didn't get rid of previously because we....ok, never mind, too much boring detail.  It would really not be good for this to be another separate one that cropped up immediately after we got the first one taken care of because that means her bladder isn't emptying.

Emma has never been cranky or had a fever with a bladder infection.  When we found out about this one on Tuesday, Emma's Shriner's nurse, Jean, said to let her know if Emma started to get sick and feverish; otherwise, she'd wait to get an antibiotic on Thursday once the bacteria had cultured and she knew what to get her.  We all said, oh, well, she won't get sick.  She just doesn't run a fever with bladder infections.

Yesterday my mom called me at work to tell me that Emma had a slight fever.  Jean ordered an antibiotic immediately.  Emma ended up with a pretty consistent fever of about 100.5.  She slept from 4pm Wed. night to 6am this morning, was awake for 30 minutes, went back to sleep for another hour and a half.  She hasn't been able to eat anything except her bottle (she throws up anything else).  Her formula is so thick that it sticks to the sides of the bottle, so we can't give her the antibiotic in the bottle or she may not be get the full dose...that means forcing her to eat some yogurt with the antibiotic in it and hoping she doesn't throw it back up again.  And giving her Tylenol for fever makes her gag and throw up.

You see, any of the fever/bladder infection issues would be alarming for any parent.  But Emma can't even get the medicine down.  And then we have to worry that her throat will start closing up again.  We don't really know what triggered her throat to start closing up in May/June of 2010.  Some doctors have told us it could have been a virus.  And we've watched her struggle to breathe and turn blue gasping for air in the last 24 hours.  Are we about to go through that again?  This is the question that was turning over and over and over in my mind.

Then this afternoon - breakthrough!  After waking up from a two-hour afternoon nap that was full of choking and turning blue, Emma suddenly felt like a new baby.  Temperature: 95.3.  Aunt Eva didn't even know she had been sick.  Emma comes home, temperature: 100.4.  She got all cranky, whiny, and sleepy again.  She is now sleeping in her crib with a lower temp: 99.3.  She's still not interested in eating anything, but we did manage to get that last dose of her antibiotic in her.  Praying for a good night and an even better day tomorrow...

Calling it how I see it

Can I get something off my chest?  Something that really bothers me because I don't think it's true, but something that spina bifida mamas say all the time.  "Yes, life is hard with spina bifida, but I wouldn't have it any other way."  Come on.  That's a LIE!  Do you honestly think there's a (legit) mom out there who is HAPPY her child has spina bifida?  Nope.  No way.  Ok, I admit that during our move in the last month that I have been happy that Emma isn't standing and running on her own for ease of packing and moving, but that's more like finding the silver lining on a very dark, black cloud.  I would never, ever say, "Oh, but I wouldn't have it any other way."  God calls us to seek Him everywhere, in all our circumstances and everything we do, but let's not confuse seeking the Lord in this less-than-perfect world with plain old ignorance and fear of facing reality.

Ok, now that that's out of my system, on to more pleasant things.  Mostly pleasant.  Maybe a little alarming.  First of all, we awoke on Sunday morning to find Emma's angelic little face completely unmarked by the pressure points of her bipap mask.....because she had completely dismantled the mask sometime during the night.  We have no idea how this happened without us knowing it because anytime there's a significant air leak, an alarm goes off.  This happens SEVERAL times a night, usually because Emma has moved into a position that shifts the mask.  How did we not hear the alarm Saturday night?!  Maybe after a certain period of time, it just stops beeping?  So if it beeped for that long, why didn't Emma cry about it?  Her crying is louder than the alarm.  And I know she didn't disassemble this complicated mask in her sleep.  On the rare occasion the mask completely comes off her face while the air is blowing, it's LOUD and very violent, so I KNOW she woke up when the mask came off.  I just don't get it.

This is how the mask is supposed to look:

And this is how it looked on Sunday morning:

Since we're on the topic of Emma's room, I came home to find some sort of strange home renovation casualty in her room. Our electrician is here this week doing all sorts of things to update our house. And when I say updating, I mean joining the last 30 years of civilization by getting outlets in our bathrooms. But I digress...after the electrician's first day of work, I investigated the progress and found this in the corner of Emma's room, which actually needed no electrical modifications. See that smudge on the left? That's blood. And not anyone's that lives here. Interesting, huh?

 

In other news, Emma has been making huge strides in eating.  She has good days and bad days in terms of amount and nutritional quality of what she's eating, but overall she's doing really well with new and different foods and textures.  Tonight she scarfed down a pretty good bit of a grilled cheese sandwich and drank a lot of water from a cup.  She won't use a sippy cup or a straw, so we're kind of skipping right to drinking from a cup, with a lot of assistance and overflow.  Here's a great shot that Aunt Ally got of her trying to shove an entire chicken salad sandwich in her mouth.  Emma has become a chicken salad connoisseur, just like her Nan.

This next set of pictures is a little late, but better late than never.  Emma came to the Boston College/Clemson game with us a week ago, and she and I stayed out in the parking lot in the PERFECT weather to enjoy the game via satellite, with lovely wagon strolls during commercial breaks.  As much as she LOVES her wagon, she still needed to find some things to entertain herself, and toys are becoming increasingly less entertaining.  Enter the unopened bag of BBQ Fritos.  And my bracelet.

Emma's progress

In the midst of the moving chaos, I haven't been as good about filling you in on Emma's progress, both accomplishments AND concerns.

Baby girl is able to drink some water dropped into her mouth out of a straw.  Not a lot, but some.  Her speech therapist says that she is micro-aspirating, which we thought sounded awful, but it's actually better than what she used to do.  Emma is more able to eat adult food (within limits), but all it takes is one texture to hit her the wrong way or a first bite of something she doesn't like....here comes the gag....and here comes ALL the food.  That's very frustrating to have fed her all this food and then just have it come back up again.  This is a very common problem with spina bifida kids, so as bad as it is, I DO feel better that it's not just Emma's rare, quirky way.

Emma is still army crawling all over the place and getting into everything she can.  We don't have latches on the kitchen drawers and doors yet, so we REALLY have to keep an eye on her.  She is working on getting up on her knees.  She will crawl forward and then push back with her hands so that she goes up on her knees.  She rocks a little and then goes back down again.  She'll get it one of these days.  Here are a couple shots of her and Lola watching Daddy sweeping the grass clippings off the sidewalk.

As for Emma's speech, she WAAAAY delayed.  Right now, her speech therapist is only doing the VitalStim therapy.  That's all that she can do for Emma because she's only doing VitalStim therapy for her outpatients.  The therapy has really taken off, and her speech therapist is SWAMPED with other VitalStim patients.  What a blessing that is.  Anyway, Emma's going to start regular speech therapy soon with another therapist.  But for now, her current therapist says that all the different sounds, inflections, and body language while she's speaking (which is hilarious I might add - arm and hand gestures, head nods and shakes, raised eyebrows) are actually advanced for her age.  The words are up there in her head, they're just not making it out of her mouth.  Apparently this is called apraxia and isn't a horrible thing.  Obviously, it's not ideal, but some speech therapy should fix it over time.  There's basically a mismatch in skills...see this definition: "the child's ability to understand language (receptive ability) is broadly within normal limits, but his or her expressive speech is seriously deficient, absent, or severely unclear."  Emma understands commands and can respond to them physically.  Combined with the advanced sounds, these two things, are the basic symptoms leading to this diagnosis.  You usually can't diagnose a child under two with apraxia, but Emma's is pretty obvious.  Just one more thing.

I have a prayer request: I have taken so much comfort in the fact that mentally, Emma will be ok.  This is the first really serious mental/communicative delay that we've encountered.  Once again, something that we had thought was normal about Emma is being taken away from us.  Going waaay back, first it was just a small back scar (now it's huge), then it was being able to swallow thin liquids like formula, immediately after that it was having a normal spinal cord and brain with no cyst, then it was sleeping like a regular kid.  Those are all physical maladies that were difficult to accept, but I always hung my hopes on an average kid mentally.  And here we are.  Scary.  But I AM so thankful that Emma has access to all these therapies and a Nan who will take her there.

Ok, update on last year's events:

October 3, 2010

October 6, 2010