Friday, August 26, 2011

Feed me

To continue with where I left off on my last post, Emma is eating better and better each day.  So far today, she has eaten a whole scrambled egg.  Two nights ago, she demolished a biscuit just like a normal kid, which is significant not just for her eating and feeding herself, but also because she didn't mind getting her hands dirty.  Here's the evidence:


See those shiny things on top of her eyes that make her look kinda nerdy?  Those are GLASSES.  Yes, her glasses.  She wore them for a pretty decent amount of time that night.

And here's a shot of Lola just waiting for some bites of deliciousness to hit the floor (some of you may have seen this on Facebook):


Emma is sleeping better and better with her mask on in her crib at night.  As for the naps, we're still taking baby steps, but they are definitely steps forward.  God has answered so many people's prayers regarding the naps at Nan's house.  Emma isn't sleeping in the crib at Nan's house, but she IS sleeping on the bed with Nan and with the mask on, and this is definitely a step in the right direction.  The last few days have been wonderful with these naps, and my mom is feeling much more comfortable and at peace with putting the mask on her baby girl.  (By the way, my mom's nickname for me my whole life has been Baby Girl, but I think I've been dethroned.)  Russell and I have tougher skin than our mothers, so on the weekends, we have been putting Emma in the crib for her naps.  Those haven't been pretty - prolonged periods of crying before she finally gives in, and the naps aren't as long...but I'm not discouraged at all.  Some families deal with worse sleeping habits than this with kids who have no medical issues, so I know that the Lord is watching over us. 

My dad managed to condense the Flip camera video that my mom took the other day of Emma eating her roll.  I don't have the time right at the moment to figure out how to save the Flip video to my computer, so hopefully this link will work:

http://sharing.theflip.com/session/7f3da2b754b13f567d268b0d397551a9/video/108324391

Monday, August 22, 2011

The Bee in My Bonnet

You probably remember that last spring I got a real bee in my bonnet about children not being able to receive VitalStim therapy at the hospital due to some stupid financial bureaucracy.  I was on a mission to get the funding or simply an administrative kick in the hiney wherever it was needed in order to provide this therapy to all kids who needed it.  Well, God decided to do it Himself :)  I didn't have to do anything, really, and the hospital now has the electrode expenses in its permanent supply budget, and there is no financial obstacle to getting that therapy to all kids.  However, there IS a personnel availability obstacle.  Emma's speech therapist is the ONLY person certified to perform this therapy, and she has a pretty intense waiting list of kids who need it.  So the next step is to pray for the hospital to shell out the bucks to certify another speech therapist and probably buy another conducting machine (I have no idea what it's actually called, but it seems to be a machine that conducts electricity.). 

During Emma's last therapy, Dru, her therapist, commented that Emma will probably be more of a long-term patient with the VitalStim therapy.  We were kind of expecting that the VitalStim wouldn't correct her swallowing quickly.  Luckily, the hospital's blockades to the treatment have come down, so there's not an issue with continuing the therapy.  Three interesting things have happened with Emma's eating habits.  Actually, let me back up and explain her eating habits first.  Emma's food needs to be relatively smooth, non-grainy, skinless, and dissolve quickly if possible.  She can't drink anything because she chokes on it, and she has ZERO interest in a sippy cup or straw because she has such awful texture issues.  The texture thing is common to all kids with spina bifida, even those whose symptoms are not as severe as Emma's.  Emma doesn't put anything at all in her mouth because of those texture issues, which is great when she's crawling around on the floor....not so great when we're trying to teach her to pick up small pieces of food and feed herself.  That brings me to the 3 "events": (1) At my parents' pool on Saturday morning, Emma suddenly leaned down and started trying to drink the water.  No idea what that was about, but we're going to be talking to her speech therapist about giving her liquids.  (2) Emma was sitting on Mama Jane's lap and out of the blue, reached down, grabbed a piece of artichoke and put it in her mouth.  We grabbed it out of her mouth, mainly out of shock, but also out of concern that she would choke on it.  She has learned what it looks like when we all sit down to eat and that something on a plate is meant to go into her mouth.  (3) This morning my mom set down a fresh roll on her high chair tray, along with small pieces she had torn off for Emma to eat.  Emma picked up the whole roll and starting biting small pieces off of it and chewing them like a big girl.

It's pretty obvious that these milestones are significant for Baby Emma.  But let me tell you why they're so significant to me.  Other moms get to watch their children discover and do things on their own, with no therapy, no training, no encouraging, no prayers for their children to accomplish simple tasks.  Nature just runs its course with other kids.  I have finally been able to watch my daughter take major developmental steps with no prior practice, no therapy...she did these things by herself, out of the blue.  What a blessing to be a mother.

PS - My mom sneakily got her Flip camera out and videoed Emma eating the roll.  If Emma had known she was being filmed, she definitely would have dropped the roll and started waving and making googly eyes at the camera.  I'll try to get a copy of it to post on the blog.

Saturday, August 20, 2011

Moving on

It's been 16 days since I last blogged, and quite a lot has happened...and not happened...and is yet to happen.

Here's a change: the "not happened" actually has to do with Emma.  She is still cruising, literally and figuratively.  She has been great sleeping with her mask in her crib at night, mainly because she's too tired to care.  She usually sleeps through the night with it.  Naps are a different story.  With her busy schedule, it's hard to have Emma at home when it's time for a nap, which is never the exact same time every day.  When she IS at home and sleepy enough for a nap, fighting the mask and crying isn't pretty.  But we'll get there.

The "has happened" is about our house.  We have a signed offer on a new house, and it will be inspected next week.  I don't want to spill the beans about where it is or anything yet because we still have to have inspections, a survey, and an appraisal.  But we hope to close sometime during the last half of September.  It's one story for Emma, and there's a good-sized fenced-in back yard for Lola.  The last time we looked at the house, there was a renegade (and rather large) cat sitting in the back yard watching the wildlife.  I'll be having a word with the neighbors about that cat.  I don't have a problem with other people's cats, but I personally don't want a cat.  Neither does Lola.

When we feel comfortable with the inspection and appraisal, we'll take the next step with our townhome.  Here's the "yet to happen:" we're going to lease our home to a wonderful couple who we feel certain will take great care of our house. 

Emma is still a sweet little girl with a lot of love to share, as you can see in this video with our friend, Rob.


I have a lot of catching up to do on last year's posts:

August 5, 2010

August 12, 2010

August 18, 2010

Thursday, August 4, 2011

Medical updates

I feel like bullet points tonight.
  • Today Emma's VitalStim therapy was cranked up to level 10 (this is significantly higher than it had been, but I don't know at what level it maxes out), and she DIDN'T CRY about it.
  • Emma's sleep specialist informed us on Monday that we have to start Emma on strict behavioral sleep training.  This involves Emma being awake, laying her in her crib at 9pm, putting the BiPAP mask on, and leaving her.  Yeah.  Right.
  • We have a strict schedule to follow with Emma's sleep training, with varying minutes of leaving her and coming in to comfort her.
  • So far, we have not followed the schedule.  Because she hasn't needed it :)  Girlfriend is sleeping like a champ.  We've only done it for one whole night now; night #2 is successful thus far.
  • Tomorrow the sleep training applies to naps.  Yikes.
  • Emma's choking has gotten better (well, less frequent...severity is the same), but it hasn't gone away.  We are hoping the VitalStim is slowly but surely taking care of this.
  • She still refuses to wear her glasses.  With gusto.  And her eyes look terrible at times.
  • Emma's knee immobilizers came in, so tomorrow at therapy, we'll see how she does with these little contraptions that force her knees to straighten so that we can start to teach her how to stand.
Ok, enough with the bullets.  Emma is happy, happy, happy.  Russell and I have a new reason to be happy, happy, happy.  We think we may have found a house we like.  We haven't even seen the inside of it yet, only pictures, so I could be completely wrong here.  But the wheels have started turning.  It's a little rough around the edges, but nothing that some one- or two-week projects can't fix.  And since our house is STILL on the market, we are considering leasing our house.  I cannot even tell you how much I DON'T want to lease.  Ever since our house has been on the market since last October, I haven't felt any sense of urgency because I knew that God was taking care of us.  But something feels different now.  My personal plan/what I thought God was going to do was for us to sell our house and then move into another one.  Of course, we all THINK we know what path God will lead us down.  Now...I'm not so sure.  I'm still pretty nervous about possibly renting our house, but judging from the astronomical number of phone calls I've had about renting, maybe this is God's direction for our lives at this point.  What matters in the end is that we trust that He will protect us financially and provide us with a home that is safe for our baby girl.