Equipment for the busybody

Today Emma was fitted for her stander at physical therapy.  She tried out a couple models, and I have lots of pictures.  This first one is a mobile stander with the wheels attached.  It's too tall because it's a size small, and she will fit in a "mini."  The chest pad is designed to come up to her chest (duh) and not her chin.  Hers will be raspberry-colored.  For you men, that's pink.  The big wheels on the sides will allow Emma to move herself around when she gets a little bigger, but in the meantime, we won't have the wheels on, and Emma will just practice standing.  We can roll her around on smaller wheels, but it's not self-propelled until the wheels on the sides go on.  The point of a stander is to introduce kids with diminished leg strength to standing with their legs and trunks supported and knees straightened.  Have you heard that aging adults should lift weights to help with bone density?  Same concept with these kids - besides helping them learn to walk, standers help their bones develop stronger because it's weight-bearing exercise.  Otherwise, their bones would be even more brittle and less developed than they are prone to be because of their disabilities.  Ok, enough with the boring medical talk.  Let's see Emma in action.

She'll have a little tray in front of her, and keep in mind that that chest pad will actually be at her chest, not her chin.

Emma actually pitched a complete fit after a few short minutes of being in this stander.  We hope it was because she was uncomfortable with that thing all in her face.  We took her outside to put her in the other one since she likes being outside so much.  It didn't go so well at first:

But things went much more smoothly after a few moments, and then Nan took Emma for a ride. Check out the cute tushy with the tiger paw.

A few more things about The Care Center - they have wonderful Bible verses on the long walls in the gym.  It's so wonderful to have God's Word over us as we travel a difficult journey. 

There are lots of things to love about The Care Center, and being a dog lover, this is definitely one of them:

I can't remember her name, but this is a one-year-old service dog that is being trained by Sabrina, the physical therapist to the left.  It's Sabrina's personal dog, but she is in the process of being trained as a service dog.  I think it's ok for me to say that the dog is being trained on a few different levels, and one of them is as a Dogs for Autism service dog.



After all this stander business, Emma then proceeded to roll over for her therapists and impress them with her leg movement.  Our family didn't realize this, but Melanie pointed out that after Emma rolls over to her stomach, she's actually trying to then sit up.  I'm so proud of our Doodle.  I left therapy today feeling so blessed and uplifted.  God's pretty amazing that way, isn't He?

It's video time!

As I reported on my last post, Emma started rolling from her back to front, going left to right.  Now I know this doesn't seem like a big deal to a lot of people, but it is to us since Emma has been through so much and will continue to experience a tough life, especially as far as mobility is concerned.  So if you don't want to be bored by the video, that's fine - just don't watch it.  I put her on the floor today and grabbed some footage:

She wasn't making much progress in rolling from right to left yesterday, so we thought it would be a while before she could accomplish that.  Nope.  Wrong.  That was her trick tonight.  She's enjoying being on her stomach a little bit more, and we've discovered that SHE has discovered how easy it is to roll now....during diaper changes, putting on AFO's, etc.  And it's wonderful.

The other video is meant to gain some sympathy for our dog, Lola.  As you watch this video of Emma sitting in her Bumbo seat way up high on our island (supervised, of course), imagine our 14-pound dog walking around on the floor, dodging baby bullets.

Just as I thought it would be

An overnight sleep study with an 11-month-old child should be a new form of sex education.  I can guarantee you no middle or high school child would have sex if they had to spend the night with an 11-month-old baby with a nasal canula, goop and electrodes in her hair, and tape stuck to her face.

We only slept uninterrupted from about 12:30 am to 6 am.  Emma just kept waking up, and as you can see, it wasn't really an option for me to pick her up and soothe her.  We will get the official results of the study in a few weeks, but I don't think they will be severe.  If Emma was having really serious problems, they would have woken us up and done whatever they needed to to get her sleeping safely.  We left the sleep center at 6:15, and my wonderful husband took Emma right when we got home and bathed her to get the goop out of her hair.

Oh, and it was FREEEEEZING in the room.  The techs were really nice and thought Emma was adorable.  Until she started screaming, I'm sure, but whatever.  I was so sleep-deprived, I didn't care.  Here are some shots of the "lab."

So I made it to work and felt ok, but then proceeded to sleep for 11 hours Friday night.  I would have slept longer than that, but I had to get up and get my nails done :)  Emma slept for 12 and a half hours Friday night.  Delightful.

Let me preface this next portion of the blog with some PT details:  Emma's PT, Melanie, is working really hard on getting Emma to roll over from her back to her front completely unassisted.  Emma's legs are a little hefty, and she doesn't have as much leg control, so it's harder for her to get her legs swung all the way over.  The other thing they're working on is getting Emma to bear weight on her arms in the crawling position for extended periods of time.  So last night I put Emma on our bed while I put on my pj's.  She seemed to be feeling pretty good, so I put her on her hands and knees.  She did a great job staying up on her arms, and then she started rocking - a precursor to crawling!  Yay!  I was happy enough with this development.

When I came home from my morning of pampering this morning, Russell said (rather casually), "Emma's rolled over a few times this morning."  WHAT?!  We immediately put her on the floor on her back, and BAM! Rolled over.  Overnight, Emma figured how to do it, and she does it over and over.  She basically is using her abs to replace some of the leg muscle that other kids use.  She pulls up into a pike (almost a crunch, with straight legs) and then swings her legs to the side and finishes the roll!  If she's feeling energetic, she'll even get into a crawling position.  My mom dropped something off today, and Russell's parents came for dinner tonight, so we all got to celebrate Emma's new development.  She will only roll to one side, so I'm sure it's only a matter of time before a naysayer bursts our bubble, but in the meantime, we are thrilled with our precious girl.

Tonight she wanted to use the computer, but it wasn't the screen that fascinated her; it was clicking the keys.  Sorry it's a little fuzzy - a camera phone and a busy girl aren't a great combo.

Oh, last thing - at Emma's check-up on Thursday morning, she weighed 20 lbs, 12 oz and was 28 inches long.  She's a shorty, but her weight is getting down to average. 

Lots of progress in a week!

Well a lot has happened since I last blogged - no huge things, but lots of little things.

Emma's third tooth is here to stay.  Number four is close behind.

On Monday, Emma turned a corner at therapy.  I pray she did, at least.  She was very happy at therapy.  Ok, well maybe not happy, but certainly not miserable.  We brought her a little early so that she would have some time to get used to being there before jumping right into therapy.  Emma whimpered once, but we were pretty much free and clear after that...until she got really tired at the end.  But that's to be expected.  Today my mom brought her back to The Care Center, and Emma enjoyed herself again.  She still needs us to be with her, but after the last couple of months, even that is an improvement.  She is doing SO GREAT with sitting on her own, and now she can even keep one of her legs bent in front of her as she sits.

We finally got shoes that fit Emma's chubby feet and clunky AFO's.  The AFO's are made for her to feet to grow into, so they're a little long.  Add to that all the Velcro around her ankles, and it's hard to find shoes that fit just right.  So Emma's first pair of AFO-friendly shoes: size 5 extra wide pink New Balances.  Now that she has shoes with rubber soles (non-latex, I hope), she can get in her Exersaucer and practice putting weight on her legs.  She pushes up to a standing position in the Exersaucer, but we have to watch her to make sure her feet stay under her.

These are shots of her first experience in the shoes, and let's just say that Daddy was so excited about it that he didn't bother taking the tags off the shoes.  Classy, huh?  I promise we're not going to wear them and then return them.  Can you believe how fat her legs are?  Her arms and belly are still a little chubby but nothing compared to those legs.  I'm waiting for her 6-pack to pop out at any moment because she's got some strong little abs.

As I'm typing this (at 9:10 pm, mind you), Emma is wide awake and pushing to a standing position in Russell's lap.  Way to go, Little Bit.

Tomorrow Emma has a checkup in the morning and her sleep study tomorrow night.  I'm so interested to see what it'll be like, and I really hope they have a chair I can hold her in to get her to sleep.  It was NOT my choice to start rocking her to sleep, but there are a couple other forces at work in my daughter's life (I'm not naming namesRussellandNan) that have created this bedtime routine.  She's got to get in a crib with all kinds of wires and electrodes attached to her...I just don't know how this is going to work.

Emma has also become a pro at waving hello and byebye.  Sometimes she's actually waving to herself, but still.  Pretty darn cute either way.

Well look who's back

As I've reported lately, Emma has been a little terror at therapy. Her therapists have actually said, "Where's the Emma we know and love?"  It has nothing to do with who is with her (or not with her, for that matter); she just doesn't want to be there to work. So Melanie, one of her PT's, and KP, her OT, have come up with a plan. Mondays and Wednesdays Emma will be coming to therapy with Nan, and Nan will actually be doing the therapy with occasional guidance from the PT's and KP. Friday will be normal therapy. So today Emma and her entourage (Nan, Mama Jan, and Aunt Eva) had some extra time, and they dropped by The Care Center to hang out for a bit. Lo and behold, Emma flipped out when they walked in. But a few minutes later, with my mom holding Emma, what I’m sure was an eerie silence came over Emma. I know the folks at The Care Center were puzzled to see a quiet, peaceful Emma. She began to play with some of the toys and even smiled at KP and Melanie. They didn’t come work with her, just came over to chat – and Emma was JUST. FINE. So maybe this is going to take a while, but at least now we know it’s possible for Emma to be in the building and not flip out.


In other PT news, Emma is getting fitted for her stander in a couple weeks. It takes quite a while (3 months I think) for them to come in because I guess they’re custom made.

Tooth number 3 is all the way through!! Yay! I’ve got to wrap this up now because Emma is in my lap trying to get to the computer because (1) our power just went out, (2) she got freaked out by the dark, (3) she’s tired, and (4) the keyboard was much too enticing from her view in the high chair. I’m trying to type with a wild monkey in my lap. Blogging is officially over.

New things in Emma's life

First of all, the AFO's:

I was a little disappointed with the "dalmation" print - I thought it would look more like a print/pattern, rather than some middle schooler bored during class with a black Sharpie.  It also looks like a cow print - very appropriate on Emma's fat legs.  Her feet are strapped in there in a very specific way to keep one of them in particular bent in the proper position.

Emma concentrates very hard these days, which requires sticking out her tongue.  And ripping off those glasses...let's just say we've reached a whole new level of difficulty keeping them on her.

Our brand new big girl carseat!  Yay!  When we turn her facing forward in a few short months, I hope she'll enjoy that even more.  In the late afternoons when I'm bringing her home, she's very whiny and tired, so hopefully a view of the road and where exactly we're going will help.

Big girl high chair!  She loves it.  As do we.  That little sideways glance is so precious when it's directed at you that it's hard to be upset that she probably just ripped off her glasses...AGAIN.

Look at those fat chins and cheeks.  Emma's, not Russell's.  For some reason she looks so much chubbier in pictures.  I think, too, that when she smiles, she pushes her chin down.  Doesn't matter, she's still beautiful to me.

OH GOSH!  Almost forgot the biggest news of all!  Tooth number 3 has finally made its appearance.  Basically.  There's no, "Oh, look, it's almost here...any day now...I think I can see it..."  One little part of the ridge of her right front top tooth has come in fully, and you can clearly see the rest of the ridge waiting to pop right through...probably tomorrow.  Which leads me to something I'm kinda stressed about...Emma is not covered under my dental insurance or Russell's.  I basically should have signed her up for it within the first 30 days that she was born, just like her medical insurance.  We have alternating years of open enrollment in October, and this past October was....well, closed enrollment.  My bad, I thought I could enroll her then!  So now I can't add Emma until next October, and I'm starting to feel like a bad mom wondering if I should wait that long to take her to the dentist.  She's not eating table food like most kids, and we brush her two little teeth every day.  But on the other hand, can I honestly wait until my child is 19 months old to take her to the dentist?!

Attitude

So we finally went to the sleep doctor, and it was a pretty uneventful visit.  The doctor is WONDERFUL, and he completely agreed that we should do a sleep study on Emma to make sure that her Chiari II malformation isn't causing some sleeping issues.  He did tell us that kids can to have odd breathing patterns when they sleep, but that doesn't mean that we don't need to be on the lookout for Emma.  We have an appointment later in the month to spend the night at a sleep disorder center right around the corner from us.  Either me or Russell will spend the night with her.  We'll get there at 8 pm and leave at 6 am, and there will be a nurse who will monitor her sleep all night.  Then the results will be analyzed and read, and we'll come back a couple weeks after the study.

Emma also got her AFO's on Tuesday (no pictures of her in them yet).  She will gradually build up to wearing them 8 hours per day, and it's just something we have to get used to.  We, not she.  She tolerates them just fine.  She didn't tolerate getting fitted for them very well at all.  She was smiling and being really sweet to the orthotist (I don't know what to call him, so that's what I'm calling him for now), and then the second he sat down on a stool, rolled over to her, and started taking off her socks, she pitched a fit that last for a good 30 minutes.  All because she thought she was going to have to do therapy.  We took Emma out to the lobby to look at the illuminated Coke machine, and she was fine...the moment we stepped back in the exam room, the screaming started again.

This type of fit happened again at the sleep appointment.  They did all kinds of things with her - weight, length, breathing, measuring her neck, etc, etc.  They even took her blood pressure with one of those tight blood pressure cuffs, which kids usually hate.  Not Emma - didn't bother her one bit.  But then the nurse took off her sock and started to put an oxygen monitor around her big toe, and the tantrum started.  Nothing is wrong with this child, other than the fact that she doesn't want other people making her do therapy.  Emma also pitched a fit during therapy on Monday, as always.  Once it gets warmer out, we're going to attempt therapy outside on their playground.  Maybe a change of scenery will help...who knows.

Oh, one more thing about the sleep doctor - besides the whole sleep apnea thing, he thinks he can help us help Emma nap better and sleep in her crib better.  He said, "Give me 5 to 7 days."  What a delight that would be...but I'm skeptical.  I guess that means he's going to move in for a week.  That's the only way I see him helping.

Ok, time to put the little one to bed.  Russell was dad of the year tonight while I did massive shopping at Switcharoos Consignment.  It's a semi-annual consignment sale of epic proportion.  I'm exhausted and quite happy to spend some cuddle time with my sweet girl.

Not a lot of new news

As for Emma's appointment with the pediatric sleep specialist, they are going to try to get her in as soon as possible this week.  Of course, they closed on Friday at 3:30, so by the time I got this message via Dr. Troup's nurse, they were closed.  This is exactly, PRECISELY what I was ranting about on the last blog.  Stay. Open. On. Friday. Afternoons.

Now for some visual delight.

Napping with Daddy.

Napping with Lola.

Napping with Betsy, her doll (and no, we didn't pose them.)

What does all that napping leave you with?  Bedhead.

PS - Lola isn't crazy about Emma, but tonight she has let Emma drop heavy wooden blocks on her head.  So Lola is either warming up to Emma or Emma is knocking the mean out of Lola.

Don't know if you can call this an update...

...when there's not a lot of new information.  I hadn't heard from Dr. Gault's office (the pediatric sleep doctor), so I called Dr. Troup's office yesterday, Thursday.  They sent Emma's referral to Dr. Gault, and Dr. Troup and Dr. Gault had even spoken about Emma.  I don't know what was said, but it would seem that the ball was rolling.  I called Dr. Gault's office this morning, and they didn't have the referral from Dr. Troup's office.  Communication, people.  I need to know if my daughter stops breathing in her sleep - this is kind of a big deal!  Could you please work on your communication skills?!

Anyway, I just wanted to let our friends and family know where we stood on this issue before the weekend.  Of course, since it's Friday, I'm sure they close at lunchtime (don't even get me started on that common practice), so we might not know anything else until Monday.

Everybody have a great weekend!

PS - After my mini-rant, I do need to applaud my dentist's office: they are open on Friday afternoons.