Life With Sweet Baby Emma

Piddly little MRI

2012-01-23T19:13:00.000-05:00

Emma had her MRI on Friday afternoon, and she, of course, dealt with it all like a champ. We did our best the night before to stuff her like a little pig and keep her up as late as possible because she couldn't eat past midnight until the MRI was over around 3:00 Friday afternoon. Emma slept late and didn't fuss once about being hungry. She even went back to sleep for a 45 minute morning nap. I can't even remember the last time she took a morning nap - this is how I know God is watching over our little girl. Not just the big things, but the little things like lulling her to sleep so that she doesn't feel the hunger.

Anyway, Emma came through the MRI just fine, even with the breathing tube down her throat. She fared much better than she did after her last MRI in June - no choking, coughing, gurgling. Just kinda scared and not wanting to let go of Daddy. I fed her in the recovery room, and we were home by 5:00. It took some convincing to get the anesthesiologist to let her go home. Hospital protocol states that any child with sleep apnea must be admitted for overnight observation if he or she has been put under anesthesia. Thankfully, Emma's sleep specialist called in when he was paged late on a Friday afternoon to put the anesthesiologist's fears to rest...otherwise, we would have had to come home Saturday morning.

The hospital staff let Emma take Bun back with her. She loves on Bun when she goes to sleep, and he's very comforting to her. When we got back to Emma in the recovery room, Bun had apparently received an IV as well.

We will get the results of Emma's MRI on Feb. 2. Dr. Troup will tell us then when he's considering doing Emma's Chiari decompression. Unless her symptoms get drastically worse, the earliest she will have the surgery is probably April.

Emma continues to amaze us with her language development. Her most recent words are key, tools, three (or something similar), Leigh (my coworker), uh-oh, more, and bot (bottle). When I say recent, I mean in the last 4 days.

God has truly blessed us with answered prayers. Thank you to all of you who were praying for our baby girl on Friday. Our church family has simply been amazing in supporting us. Stephen, our pastor, came to the hospital on Friday and hung out with us during the MRI. Words just don't express the respect and adoration I have for that man. He feels like part of our family. Russell and I joke around with him like family, too - dangerous territory! Let's hope Stephen sticks around for another 40 years or so - his wisdom, humility, relatability, and, most especially, love for Christ, are exactly what I want my daughter to experience in a pastor as she grows up. And if we ever move away from Greenville, we fully expect Stephen and his wife Sylvia to move with us!

In closing, let's take a stroll down memory lane at how Emma was doing this time last year:

December 21, 2010

January 1, 2011, #1

January 1, 2011, #2

January 1, 2011, #3

January 1, 2011, #4

January 5, 2011

January 9, 2011

January 10, 2011

January 12, 2011

Get up, stand up!

2012-01-16T18:09:00.000-05:00

Baby girl is learning how to stand on her own! (I had to take this video from my phone, so it's really small. You may want to click on the link at the bottom of the video that says "YouTube." It will take you to the video on YouTube. Once you're there, you can make it even bigger by clicking on the larger rectangle on the lower right hand corner right below the video or by clicking the icon with the corners outlined.)

Best Friends

2012-01-14T09:21:00.000-05:00

Ok, well, maybe not BEST friends. But they're getting there. Lola and Emma are really enjoying each other's company more and more. And Lola is super sweet to Emma. Lola enjoys placing her toys on Emma's lap so that Emma can throw them. Lola then takes the 2 steps' distance to retrieve the toys that Emma has done her best to throw a long way and places them in Emma's lap again. I personally think this is really sweet of Lola because typically, the farther you throw a toy, the more she loves it. Her little doggie mind knows to humor Emma, though.

The next big moment that Lola and Emma shared was feeding time. We just leave Lola's dog food in her bowl all the time, but she only eats twice a day probably. One of these times just happened to fall when Emma thought the dog food bowl looked particularly interesting. Emma helped her eat (and tried to sample some herself), but she eventually got tired of it, hugged Lola, and went on her merry way. This video is a little long (3 minutes), so either don't watch it or have a seat.

Fatigued Friday

2012-01-13T10:47:00.002-05:00

Re: title of the blog - I was desperate for some alliteration.

Sometimes you're just so tired from dumping out all your toys that you have to take a moment to lie down on your buddy Betsy's lap.

MRI Update

2012-01-09T12:29:00.000-05:00

Just got the call - Emma's MRI is scheduled for next Friday at 1:00. This means that she can't eat for like, 8 hours prior to that. Does anyone want to trade mommy duty with me that day?

This means that there are 3 additional appointments associated with this MRI. Oh, and it also means that I feel sick to my stomach. I'm so scared of them putting that breathing tube down my sweet baby's throat and her having such a hard time breathing and swallowing for who knows how long when they take it out.

And then there are the MRI results. Something tells me that Dr. Troup is going to try to do Emma's Chiari decompression in the next six months. I don't know why I feel that way...Emma's symptoms are not getting any worse, she's progressing in all sorts of ways. But I just think that he's going to say, "It's time. It has to be done, and now's as good a time as any."

God watched over our precious one in June for her last MRI, and I know He will be in that room with her again. Trust, trust, trust is my mantra for the next two weeks.

Now for some pictures to cheer myself up. Emma snuggled up with me in the bed yesterday afternoon to wind down before her nap, and she fell asleep like this:

Once she woke up from her nap, we browsed for a new dining room table. Emma found a recliner (and it actually reclines with the footrest and everything) that's just right for her.

The really good stuff

2012-01-03T22:03:00.000-05:00

Emma is a pro at unwrapping presents. She totally gets that paper is meant to be torn haphazardly and that every piece of paper must be removed from the item underneath. She totally gets that tissue paper must be pulled out of gift bags and that it must be tossed aside with gusto. She totally gets that presents are usually at the bottom of gift bags and all tissue paper must be removed first. My heart will forever be warmed by the memories of her second Christmas that was filled with so much hope and childhood fun.

A little bit at a time

2012-01-03T20:59:00.000-05:00

So, so much has happened since the last time I blogged - what a busy Christmas season we've had! I may have to break everything up into smaller bits. I'll start with Emma's visit to see Santa. She waited in line like a champ:

Once we got to actually see Santa, Emma wasn't too sure about him...but he was the BEST Santa! We got some really great shots of her and Santa. She really looked like a big girl, and it made me a little sad.

In fact, Emma has done a lot of things over the break that have made me just a little bit sad yet VERY excited at the same time. Emma is now drinking out of a sippy cup without me having to cut a bigger hole or anything. It's a very specific type of cup, but I went ahead and stocked up on them. She now says "cute" when we ask her if she's cute. She has started a few new sounds (doe-doe-doe-doe and doo-doo-doo-doo-doo, which I'm sure will be repeated in a very inopportune place). Emma likes creamed spinach. Thank goodness, a vegetable other than green beans. When Lola barks, Emma occasionally holds up her pointer finger, shakes her head, and says (calmly), "No." The best is when she does this with a completely serious look on her face like she absolutely means business.

Ok, that's enough bragging for now. Our baby girl got only her second haircut ever! My mom is great about trimming her bangs, and we've been letting the rest of her hair grow out. I finally decided it was time for a haircut because the straight hair on the top of her head was covering up the stunningly gorgeous ringlets at the bottom of her hair. What was that I said about no more bragging? These ringlets couldn't be more perfect than if I had curled them with a large-barreled curling iron. Things didn't start out so well, but she was making faces at herself in the mirror by the end. I'm so thankful my mom was there, wearing all black and covered in blonde hair, to hold Emma while I took pictures.

Change of plans

2011-12-20T15:11:00.000-05:00

Here I sit, blogging to distract myself from the fussing coming from Emma's room as she tries to nap with the bipap mask on. If I didn't get busy blogging, I'd either cave in, scoop her up, and snuggle with her, or just fall asleep on the couch myself to the gentle sound of her My First Hymns CD coming through the baby monitor.

So here I sit. Blogging to let you faithful blog-followers know that Emma does not have an MRI tomorrow as previously scheduled. Two doctors' appointments to prep for it and two missed therapies, but no MRI. Sheesh. Emma is on the downslope of a very minor cold, but that's enough to force Dr. Troup to postpone the MRI to some point in the next 30 days. Because Emma has to go under general anesthesia and be intubated, she has to be totally, completely healthy. Aside from the runny nose for the first three hours of the day, Emma has been choking a lot more in the last few days because of all the nasty stuff running down her throat. I can't imagine forcing even more choking on my daughter by making her little throat sore from the breathing tube :(

I ordered the last of Emma's Christmas gifts today, and I'm excited to see what she thinks of her toys. We've been encouraged in the last couple of weeks by what we hope is the beginning of a few words. We have been getting the occasional "bye-bye," and most recently "cake" and "wa-wa" for water. I was under the impression that you aren't supposed to teach kids baby words like wa-wa, but her speech therapist said that for now, it's more important for her to say a word and associate something with it rather than worry with the absolute correct word. Fine with me!

Ok, time to answer some emails and wrap some presents.

Maybe I'll nap on the couch after all.

Baby It's Cold Inside

2011-12-14T22:39:00.000-05:00

As many of you know, Russell and I have faced an onslaught of problems with our new, old house, including natural gas leaks. Prior to last Wednesday night, we had had three leaks. On Wednesday night, I walked in and smelled a particularly strong gas odor in the den. I called the gas company, and...lo and behold....gas leak number four and (drumroll, please) a high carbon monoxide leak. The gas man turned off the gas to the furnace, and there we were. And there we left. We stayed at my parents' house Wednesday night and Thursday night, at the Traywicks' house Friday night, at the Knights' house Saturday night, and back at my parents' on Sunday night. Gypsies, I tell you. Gypsies. Except that we DID have a home to which we returned to unpack and repack. From Wednesday to Monday, we packed AND unpacked 3 people 5 times. I do not suggest that you try this. Especially with a small child.

Big fat THANK YOU THANK YOU THANK YOU to my parents, the Traywicks, and the Knights because this is how cold it was in our house over the weekend:

With the heat turned off completely, it got below 50 during the daytime, and who knows how cold at night. We have a home warranty, so it took a couple days for all that to be worked out, and then we couldn't get our new system until Monday. We didn't pay extra for the new thermostat, but it's the first one that the company has ever installed like this. Right now, the screensaver scrolls through nature and American city scenes, but you can put your memory card in the side and have it scroll your family pictures. Seriously? I was actually able to catch a shot mid-scroll, and the picture on the bottom shows the home screen.

Being warm and back in her own house must have inspired Emma to make a new L sound that she pretty much said all evening Monday night, Tuesday morning, and Tuesday evening. It's like she's trying to say lizard as fast as she can and imitate a lizard with her tongue at the same time. On Tuesday, she entertained various Stein Mart shoppers with this noise. They would look at her and say, "Ohhhh, look how cute! Hey darlin'! How are you?!" And she would answer like this, only l0 times longer and twice as loud:

Taking a look back at last year, Emma has progressed immensely. What a different Christmas we are having this year as opposed to last! Honoring the birth of Christ and the blessing of having Him here on Earth is a little different for me this year. I don't really know how to explain it. Last year, I remember thinking that when God blessed us with the birth of His Son, it had to be bittersweet - God knew what horrors His Son would eventually suffer. Our family also had a much more bleak outlook for our beloved child this time last year. Her prognosis wasn't all that great, and there was so much uncertainty surrounding her medical needs. Emma still has a long way to go, but she has also come so far...much farther than any doctor or nurse expected of her.

Emma has another MRI next Wednesday to compare to the MRI from June. We won't know until January what the results show. Best case scenario, Emma's Chiari malformation has lessened in severity on its own, and the large spinal-fluid-filled syrinx (cyst) along her spinal cord has drained itself. This is all very unlikely, but please pray for that outcome. Isn't it funny how we suddenly pray for results of medical tests to tell us positive news, when a condition or problem has actually been a certain way long before we started praying for results to tell us about it? Anyway, back on track....worst case scenario is that Emma's Chiari malformation has caused her brain stem to drop lower than her fourth vertebrae in her neck (where it was in June), and the syrinx has gotten significantly larger in length and width. They would pretty much schedule an immediate decompression surgery at that point. Literally, brain surgery. (Side note: you know how people say, "You don't have to be a brain surgeon to know that blah blah blah blah"? I'm dying to ask Dr. Troup how he responds if/when people say that to him. He's kind of a goofball and witty, so I'm sure he has a smart reply.) Again, back on track.....Emma's decompression will have to happen sometime. There's no escaping this reality. Apparently, the older she gets, the better she will be able to recover from the surgery. Which is a good thing, considering she will probably have to have more than one decompression. So do we just wish for it to happen in the next few months and get it over with or keep wanting to postpone the inevitable?

So let's take a look back at this time last year:

December 8, 2010

December 8, 2010

December 12, 2010

December 13, 2010

Emma's latest and greatest toy

2011-12-07T13:38:00.000-05:00

Finally, I have a video to show you of Emma's latest, greatest, and favoritest toy! Perhaps what makes it so totally wonderful is that my father-in-law made it with his own two hands, based simply on watching videos of two other kids who have these contraptions.

Let me make a few points about this video first. It was shot on a home improvement day at our house...interpret that to mean that the house is a mess, you will hear a drill in the background, and you will hear my in-laws....because no home improvement day is complete with my super-helpful and sweet mother- and father-in-law. You will also witness a slight temper tantrum that is quickly becoming a several-times-daily-occurrence in our house. Emma LOVES the video camera because it flips open, but we don't let it her play with it....because, well, it's a video camera. It's also a little bit nauseating because I had to keep moving things for Emma and help her over the rugs while filming at the same time. All that to say, if you let her loose with no rugs and no obstacles, Emma LOVES her wheels.

In this next video, Emma displays her awesome new eating skills. She still has a lot of issues that we have to deal with, but she is eating regular food better and better each day. And she's enjoying it more and more each day. She learned pretty quickly how to show us her empty mouth in order to get another bite. All that banging around in the background is Russell cleaning up from dinner. Notice that I'm still feeding Emma her dinner while he cleans up; it takes her FOREVER to eat, but we're seeing some improvement here, too! And poor Lola gets fussed at by all three of us, including Emma. I'm afraid Emma's first full statement will be, "No, Lola!"

Pictures, as promised

2011-12-04T21:51:00.000-05:00

Most of these pics are of my darling goddaughter, Elsie.

Emma, entertaining herself while I get ready in the morning:

Emma's beautiful long, blonde, and curly-underneath hair:

And finally, a shot of the ACC Championship trophy being brought over to us on Saturday night in Charlotte:

I will have some videos to post soon, but that's for another night. Let me get you caught up on how far we've come in the last year:

November 7, 2010

November 8, 2010

November 15, 2010

November 23, 2010

December 3, 2010

Merry Christmas, and good night!

Bring on the holidays

2011-11-30T14:24:00.000-05:00

Forgive me for the length of time since my last post. We as humans always seem to find ourselves busy with SOMETHING. Generally speaking, there's nothing I'd rather be busy with than Thanksgiving and Christmas. So until I can get it together to post some more pictures, here are some updates:

Emma's been battling a series of bladder infections, and she now is on an antibiotic for a few months to try to get rid of whatever's bothering her once and for all. We had to do this once before, and it seemed to work, so let's hope the long-term medicine works again.

Emma's Granddaddy (that would be my father-in-law) made her this great little mini-wheelchair out of a Bumbo seat. Pictures soon to follow, but for now, let me tell you that Emma LOVES it. She already knows how to maneuver wheels thanks to her mobile stander. We aren't viewing this new toy as a wheelchair, but more as a tricycle or toy with wheels. We refuse to give up on Emma's mobility, so this Bumbobile is used as a toy, rather than as a consistent mode of transportation.

In the last couple of weeks Emma has begun to really treasure baby dolls. She didn't have much interest in them before, but she's warmed up to them. She's a very affectionate child, always giving "squeeze hugs," offering lots of closed- AND open-mouthed kisses (to anyone, including our dog and my parents' dog), patting backs, and her most recent stunt: scratching backs. Oh, and she likes to brush your hair. So all that affection has begun to be channeled into loving on her baby dolls. So stinkin' cute.

Ok, big news: my goddaughter was born on Friday, November 18!! She was 8 lbs, 10 oz, and her name is Elsie Anne Sharp. I love her, and she's awesome. Pictures to follow.

This weekend Russell and I are going to the ACC Championship game in Charlotte. I know what you're thinking: what a waste. The wheels are going to come off the Clemson bus AGAIN. And you're probably right. So the Clemson game will just be one of a few things that we're going to do in Charlotte, and we'll pretend that the game isn't the only reason we're going to Charlotte for the weekend. Emma is staying with Mama Jane and Granddaddy, so she will be spoiled rotten upon our return.

Lots to see, little to read

2011-11-16T21:29:00.000-05:00

I'm exhausted but have lots of cute pictures of the doodlebug (and a brand spanking new doodlebug) to share.

Actually enjoying church! Is that a smile...in her Sunday School room?! Miss Glenna must have the magic touch...

Mason's 4th birthday party:

Hmmm....what to play with next...

Not really caring too much for the slide...Russell seems to be enjoying it, though:

I am absolutely certain that if Emma could talk she would say, "I gotta me one-a these here swings." She LOVED it. Do they sell these bucket swings at retail or only to city parks and rec departments? They're great for trunk support, which is what our little one will probably need for quite a while.

Fish face:

Fast forward..just who is that little girl my daddy is holding?

Our new niece, Anndie Marie Young! Born 11/14/11, a whole month early...but still 7lb, 2 oz!

The things I missed

2011-11-05T20:40:00.000-04:00

The title of this blog sounds so defeated and upsetting, but it's not - just a reflection on the things I missed during the first three months of Emma's life. I am reflecting on these things because my dear, sweet Holly is due with our godson/goddaughter in a week.

Can I just say that newborns still freak me out a little? I never really had a newborn. I had a baby in a hospital crib for three months. I'm still nervous about holding a newborn and his or her head just rolling right off. Also keep in mind that I never had a child with a small head (Emma was born with hydrocephaly), so I don't know how to cradle a newborn baby's head. I don't know what it's like to have a squirmy newborn. I don't know how to swaddle a baby. I don't know how to change a newborn's clothes without snapping off an arm or a leg. I don't know what it's like to be sleep-deprived: Emma had nurses who fed her every three/four hours around the clock when we were at home sleeping. I don't know what it's like to not have time to shower between feedings. I don't know what it's like to nap when my baby does. So you see, it's not all bad things that I missed.

Now obviously, we went through some things that some parents should never have to deal with. As I look back, though, the things I missed that I wish I hadn't missed, I will be able to catch up on with my godson/goddaughter, as well as my niece who will be born in December - getting used to holding a newborn, learning how to hold a squirmy (from the waist down) newborn, and changing a newborn's clothes (not just the side-snap shirts that Emma wore). Holly and Allison, I still can't promise that I will know how to swaddle. And I will NOT breastfeed your child. But snuggling, holding, and diapering I can handle.

Oh, that reminds me: Holly, please don't have a little boy. I don't like changing little boy diapers, and I don't think that will ever change. I will love him just the same, but diaper changes will give me the willies (no pun intended).

Since I'm reflecting, let's look back at a few blog posts in October and November 2010:

October 13, 2010

October 15, 2010

October 24, 2010

October 26, 2010

October 31, 2010

November 2, 2010

Doodleladybug

2011-11-01T21:40:00.000-04:00

Our nickname for Emma is Doodlebug. All the time, Doodlebug. I'd like to ask God to tally how many times we've called her Doodlebug and Emma and see how close the two are. So it's only fitting that Emma be a bug for Halloween - a ladybug. She did really well keeping the hood on her head. Here are some (ok, a lot of) pictures from the evening:

Excited to be going to see Rob and Holly!

Sticking her lip out to blow a raspberry

Annie the Bee, wondering why there's a baby in her house stealing her love

Apparently, Halloween was also about gifts this year. Nan gave Emma a new puzzle you can see her playing with up above in my lap, and Mr. Rob and Miss Holly gave Emma a soft new owl to snuggle with in her crib. Emma warmed right up to it.

Deja Vu

2011-10-23T23:30:00.000-04:00

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

2011-10-20T22:48:00.000-04:00

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

2011-10-17T23:45:00.000-04:00

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

2011-10-06T21:27:00.000-04:00

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

A picture is worth a thousand words...and exponentially so!

2011-09-29T23:07:00.000-04:00

It's been soooo long since I've blogged and for good reason - we've moved! Pure disaster, I tell you. I won't go through the details (most of you know them - gas leaks, rainy moving days, broken drawer tracks, etc.), so I've decided to capture my life in pictures for this blog post...plus some explanatory captions.

But first. Emma, the whole reason for this blog in the first place. She has a bladder infection. Boo. But we saw no signs of it at all; it just happened to be caught during some routine urological tests at Shriner's. She also is paying for her unwillingness to wear her glasses. Her eyes are turning more, and now her brain is attempting to figure out what correct vision is. It's basically trying to use one eye at a time more than the other, which in the end will result in a lazy eye. Her doctor told us she HAD to wear her glasses. She also has to wear a patch over one eye for 30 minutes a day, alternating eyes and days. It's like she understood exactly what the doctor was saying...Emma has miraculously been 110% better about wearing her glasses.

Oh, also, let me catch up on last year's blog posts:

September 8, 2010

September 13, 2010

September 16, 2010

September 20, 2010

Now let the fun begin!

Old house being packed up:

New house, two days after we moved in. Yikes.

New house, 8 days after we moved in. Can't tell much of a difference, can you? We somehow continue to unpack and get settled, yet the to-do list grows...

How on earth will we ever get settled? I don't see a light at the end of the tunnel. But I DO see a happy little girl who is free to crawl wherever she wants in our single story house. And she's the reason we do it all.

My blessed life

2011-09-12T00:07:00.001-04:00

Life is chaotic right now. I feel like I say that a lot, but I don't want you to think it's a complaint. More of a statement of fact. Fact: Emma, Lola, and I were all sick today. Fact: I packed 6 boxes today. Fact: I worked from home today. Fact: I emailed, scanned, signed, received, dropped off, initialed, etc., etc. lease documents, insurance documents, and purchase documents. Fact: life is chaotic. And to that point, I just panicked a little because I couldn't find any of my pictures to upload to the blog on this computer. That's because I'm on my work computer...I can't even remember what computer I'm using.

Here's the proof: a naked baby talking on the phone, dialing who knows what number...just as long as it's not 911. I swore I would never be that mom who leaves her child on the floor wearing nothing but a diaper, ESPECIALLY when her fat rolls cover the sides and end up making her look like a little boy with a white wee-wee....she's going to kill me one day for publishing this picture. But in my defense, I had to derobe her while I vacuumed up the rice cereal that she sprinkled across herself and the carpet...imagine Tinkerbell's fairy dust...well that's what Emma did with 6 tablespoons of rice cereal. Oh, wait, how could I forget to tell you that Lola thoroughly enjoyed licking up the cereal, which turned into a thick paste in her newly washed and cut (as of yesterday) beard. Agh, a couple more things: Emma's left eye is turned in because she's not wearing her glasses and absolutely refuses to do so...and the wisk and pot are on the floor because they entertained her while I cleaned up the aforementioned dog and carpet messes.

More proof: this living room is a visual representation of our lives at the moment. Notice the guilty party on the right trying to escape the scene of the crime.

(PS - Russell, if you read my blog like you say you do, this is what I want for Christmas: a camera strap like Allison has that has a little pocket in which to put the lens cap because I've lost it approximately 37 times today. I have found it each time, but not easily. Allison got hers on Etsy. Get in touch with her or Holly or Magee or someone like that to find a cute pattern. Thus endeth the does-Russell-read-the-blog test.)

And I love every minute of this chaos. Ok, well, I could do without cleaning up after a sick dog and child and not feeling 100% myself. But besides the gory aspects of cleaning up after a sick dog and child, I am so blessed. You can tell by looking at the enormous number of doctors' appointments for Emma next week that our daughter is not well. You can tell just by looking at my +20 lbs post-baby weight that things are not perfect...and you can CERTAINLY tell by looking at the pictures above that our house is not perfect. You can tell by looking at the giant stack of Emma's medical files that these past 2 years have been anything but easy. But today we are happy. God loves us, and we love Him. Our friends and family love us, and we love them.

Ok, I will leave you with a video of Emma doing some of her favorite things: playing with a wipe, pulling the wipe apart, putting things into a pile, dismantling said pile, and answering Mommy's questions in her own language. This video is also the perfect example of the strange little wave Emma has developed in an effort to unstick things from her hands. WARNING: this video is 5 minutes long and could be conceived as boring...but not to me (or grandparents, either, probably), as I rejoice in the blessing of every moment of Emma showing us her personality.

Pictures (finally, right?)

2011-09-04T19:54:00.001-04:00

Go tigers!

Please, just a taste? If I smile very sweetly and cut my eyes at you, pretty please?

When it's too hot to play outside, just use the indoor playground: stools and a high chair.

Check out Emma's first tailgate last year! September 4, 2010

Do you know what I'm talking about?

2011-09-02T22:53:00.003-04:00

I cannot cool down. Ever. Awake. A.M. P.M. Air conditioning. Sleeping. I cannot cool down. Do you know what I'm talking about?

This is sooooo not a big deal in the grand scheme of Emma's life, but I gotta be honest with you - having a child that must be held (as opposed to her walking on her own volition) makes a sweltering summer downright fiery hot. Bless her heart, she's hot-natured, too. She gets out of her carseat and wakes up from naps with damp hair and a sweaty neck. But it's so darn cute because then her ringlets REALLY curl up. It's amazing to see how long her hair is when we wash it, but when it dries, it doesn't look any longer than it was 4 months ago because those blonde curls just get tighter and tighter!

Tomorrow we're taking Emma to the Clemson game with us. She's my excuse to not go into the game. That's right. I'm not going into the game. It's too hot. I'll be feeling those occasional, itchy sensations of the sweat running down my back enough as it is. Gross, I know, but you know what I'm talking about.

The rule tomorrow is that whoever is holding Emma sits in front of the fan. (My father-in-law has a generator that we use to run a fan and the tv/satellite dish; otherwise, I wouldn't subject Emma to this awful heat.) As a result, I anticipate a more-intense-than-usual battle to hold the Doodlebug. So if you're going to the Clemson/Troy game tomorrow and want to sit in front of a fan, watch the game on tv, and sit in the shade of a tent AND a shade tree, come visit us at Lot 10 and hold Emma! We will have plenty of food and drinks, and of course we share. We're from the South! You know what I'm talking about.

I hope I get the chance to get some good pictures tomorrow. Pause, let me go pack the camera...check. We're bringing Nan and Granddad's Radio Flyer wagon for Emma, which she LOVES. Some of you may remember that she thoroughly enjoyed her stroller while we were at the beach. Well, the wagon is even better because she can hold on to the sides and twist her little head all around to take in all the sights, not just what's in front of her.

Ok, enough about the game. Emma has had a great and mischevious week. She is branching out in terms of what she's eating and how much adult food she's eating. My mom had the revelation this week that we might have to start........

ORDERING EMMA HER OWN PLATE!!!!!

How exciting! Depending on what it is she's eating, Emma (on a good day) is capable of eating a kid's plate.

We are also getting closer and closer to moving. The funny thing I just realized is that if you walk into the 2nd floor of our townhome, it looks like we're moving tomorrow. The first and third floors look exactly the same as a year ago. That's a product of us spending more time in the den and kitchen; therefore, we pack up what's around us. I guess we'll have to start hanging out on the other two floors more in order to get packed. Oh! Maybe I'll cool down by hanging out on the bottom floor...it's always very cool (sometimes even chilly) down there. I can't remember what it's like to not be hot. I have always said that fall and winter are my favorite times of year...it's when you can snuggle up and pack on the clothes and blankets and get cozy. Summer is the WORST - you constantly sweat. And you can only take off so much. I'm so hot that I swear, if anyone lays a hand on me, they will pull back a sweaty nub. Except Russell of course. Russell, I love you. Please continue to love me at my sweatiest.

Ok, time to catch up on last year's blog posts....here's what was going on with Emma this time last year. Wow, how things have changed!

September 1, 2010

Feed me

2011-08-26T10:55:00.000-04:00

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

The Bee in My Bonnet

2011-08-22T12:13:00.000-04:00

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.

Moving on

2011-08-20T15:36:00.000-04:00

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

Medical updates

2011-08-04T23:20:00.000-04:00

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.

Save it for Halloween

2011-07-31T21:06:00.000-04:00

Several things over Emma's life could be classified as scary - her open incision, all those weeks in the hospital, the constant choking and throwing up...all very scary. Now it's taken on a new meaning. One of her favorite things to do now is to scare us. She yells at us like a monster and we fake being scared. She gives us varying degrees of laughter in response to our "fear," depending on her mood and energy level. Tonight was a pretty standard giggle. I wish I could get a video of her good gut chuckles again. Here's what I'm talking about - tonight I pretended to read the paper and hide behind it while she yelled at me to scare me.

As I edited this video, Emma heard it and came crawling over. She laughed at the computer and then started making the scary noises again. Hilarious.

I also realized that I haven't posted links to last year's posts. I'll catch up!

July 11, 2010

July 12, 2010

July 17, 2010

July 27, 2010

July 31, 2010

My heart is just exploding with joy right now. I don't know if I can express it in words. The joy and love I have for this little girl is so immense, and coupled with an equal amount of praise and gratitude to God for blessing my life with her....well, my heart just feels like it can't hold all that emotion! My happy, joyful, grateful heart is completely full, crowding my body, crowding my lungs. I feel like I need to laugh, cry, hug, and snuggle for hours, just to get some emotion out of my body so I can breathe again. I'm swimming in love for my little girl, love that's all the way over my head....and then I have to go back to work tomorrow morning after a 3-day weekend with my precious one. But I know that there will be a huge smile and outstretched arms awaiting me when I get home.

Trying to survive

2011-07-28T19:17:00.000-04:00

I feel as though my life is in danger. At the beach last week, Emma was held, not made to wear her glasses, skipped therapy, and wore herself out with all the busy beach and pool activity every day. My mother is now paying the price.

Emma spent the beginning of the week being whiny about being on the floor at my parents' house, as opposed to being held, as she so often was at the beach. Two short weeks ago, she reached for the floor at every opportunity because she wanted to crawl and explore.

Emma REFUSES to wear her glasses. I don't mean waiting 10 seconds before she takes them off...I mean pushing them away as you're bringing them to her face and if you DO manage to make contact with her face, she rips them off on one side while you're still trying to get the other side hooked behind her ear. It's awful. And her eyes are starting to turn in more as a result.

Emma skipped 6 therapy sessions last week. She was miserable at OT and PT on Monday. She didn't want to do anything, and she wanted to be in my lap or on my shoulder the whole time.

Emma absolutely exhausted my mom and Aunt Eva on Wednesday. Actually, Tuesday and Wednesday, Emma talked non-stop. Non. Stop. She has had so much to say this week. And after she got over her desire to be held at the beginning of the week, she's been getting into things even more than she used to while crawling around.

I haven't gotten off scot-free, though. Emma had terrible nights with her sleep masks (both of them) Saturday through Monday nights. Finally, we've had a couple of better nights. Today I spent a moment reminiscing, remembering what it was like to not have to deal with glasses OR a sleep mask. And having the whole bed to ourselves. Rewind to November. Ahhh, now that was nice. So that reminscing caused me to fast-forward...to what would it be like to have a child WITHOUT special needs. Now I know that all children are difficult in their own ways, but to simply lay a child down in a crib at night and not see them again until in the morning...wow. And to not have to worry about how long a child has worn his or her AFO's...has she been in the stander today...how long has she been in the stander...having a week with less than 5 appointments. One day. One day I'll have one of those kids. I do not regret having Emma in any way, nor do I hold any of this against her. But you have to understand my perspective. When your first child starts creeping towards 2 years old, you start to think about that second kid. My experience with just one child makes me think I can't do it. But I have to remind myself sometimes of how difficult Emma can be, just as reassurance in my capability to have another child one day.

My cousin, Lindsey, forwarded me the daily email devotional that she gets every day, and I want to share some of it with you, in light of what I just wrote about Emma. The devotional begins talking about a lady who has 4 kids, 2 of whom are twins with cerebral palsy. Here's what that lady has to say: "although God can heal them, I’ve had to learn to spend my whole life praising Him simply because He is God – whether He heals the girls or not. I decided very early on that God is still God no matter what He allows in my life. I can trust Him even when I can't understand Him." The devotional also says this: "In every situation, I come to a crossroad and have a choice: I can pout or I can praise. I can turn away from God because I don’t understand or I can turn toward God in full assurance that His understanding is enough for the both of us – even if it hurts – even if anger lingers – even if doubt looms...We can and should choose to bless His name through the pain, which astonishingly can bring His joy into our hearts."

Some days are easier to praise God than others. I like to think that having God in my heart is what keeps me looking forward to having a less needy child, yet not resenting Emma at all. I think there are a lot of special needs moms out there who resent their children. I believe that trusting God and praising Him is what is necessary to value simplicity in other areas of life yet still love your special needs child for everything that she has been, is, and will become.

Back in the saddle

2011-07-23T21:55:00.000-04:00

I feel like I've been run over by a Mack truck. Mack? Mac? I don't know. Whatever.

I don't remember the last time I went on vacation and didn't feel like I needed a vacation after my vacation. Taking Emma to the beach was so incredibly fun...and so incredibly exhausting.

It turns out that Emma enjoys the ocean, but doesn't enjoy the sand. Or being on the ground, even on a towel. Or sitting under a tent on the ground. Or sitting in her Bumbo. Or sitting in her own little camping chair. No, the only thing that will do at the beach is either being in someone's lap or in her stroller. Even better, having the closest standing person hold all 25 pounds of her. Maybe next year she'll feel more adventurous. Walking her in her stroller or holding her in your lap or sitting in the water with her is not all that bad until the heat index gets up to around 105. But seeing that beautiful blonde-haired, blue-eyed girl basking in the sun, getting a tan on her chubby olive-colored legs, loving on our family, and enjoying her naps on the beach was worth every trip dragging her stroller through that torturous hot sand. Our nephew Mason could not have been any sweeter to her. What a little angel he was. All week long I tried to get him to change Emma's diaper, but he just kept telling me that pirates don't change diapers. (Apparently, that's a children's book.) I pray that he will be that sweet to the little sister he'll be getting in December, but his mama isn't so sure. Ok, enough with the chitter chatter - here are photos of our delightfully fabulous week.

The set-up

Sweet Mason

Loving on Mama Jane

Ahhhh, beach naps

Beach tigers

Mason and Uncle Russ, neither of whom owns a John Deere. Actually, I think Mason owns an assortment of John Deere paraphernalia

Another delightful nap

Oh, how she loves Daddy...and the pool

Hmmm...wonder how I could get up there...

Mason and Emma were in charge of breakfast

Oh, hi!

Mason the Pirate and Lindsey the Piratess

Russell cackling at the train car that has derailed under him and Emma. Don't worry, no one was injured.

Where I've been

2011-07-22T14:17:00.000-04:00

The beach!

I will post more details and pictures about the beach later, but right now I have something I need to get off my chest.

I subscribe to a great message board for moms of kids with spina bifida. And the last few days' posts have been filled with pregnant mamas who have just found out that their kids will be born with this awful birth defect. Confession time: these mamas irritate the fool outta me. How dare you get so upset...no, not upset, MAD...that your child may have to stay in the hospital for two weeks. Try three months. And don't even get me started that you're upset that your little boy might not be capable of having sex. ARE. YOU. KIDDING. ME. I just get so frustrated with people who right off the bat don't do any research or attempt to learn anything about the birth defect at all and get so upset about things that are so trivial in the end. These same people posting these asinine questions are on the SAME MESSAGE BOARD as moms who have questions about catheters, cone enemas (NOT pleasant), surgery after surgery after surgery, permanent breathing tubes, and permanent feeding tubes.

I know that I was somewhat in their shoes at one point, but I guess I'm bitter. Not because Emma's so bad off, but it's just frustrating to watch my child turn blue every day, choking and fighting for her breath, while simultaneously throwing up. And there's a mom worried about her child staying in the NICU for 2 weeks. PLEASE. Call me insensitive, jaded, rude, whatever. But there are far worse things. I just want to say to these women, "Your child does not have Downs! Your child is not mentally disabled! Your child can live independently! Your child will even be able to swim! Do you not understand how much worse it could be?!"

Sorry for the rant...some days I just can't take it when people aren't grateful for what they have.

OH WAIT. Speaking of being grateful for what we have.....I think....just maybe....there's a possibility....that the VitalStim Therapy might be working. Emma has had 5 sessions I think (I've completely lost all sense of time since I've been at the beach), and she has choked a significantly fewer number of times since we've been at the beach. Maybe it's coincidence, maybe it's the salt air (it would be awful if we had to move the whole family down to the beach, don't you think?), but I'm hoping and praying it's the VitalStim.

One of the Mary's

2011-07-13T22:48:00.000-04:00

Back at the very beginning of writing this blog, even before Emma was born, I posted about how we came up with Emma's given name, Emary. She comes from a long line of Mary's, one of whom is her great-great Aunt Mary on Russell's side. Aunt Mary passed away on Monday, July 11, and we had all her services today. Aunt Mary was 87 years old, had been a widow since 1977, and had no children. Mary Jane and Uncle Robert WERE her children, essentially. She took good care of her great-niece and great-nephews, and she was a part of Russell's family just like a grandmother would be. Aunt Mary's health had deteriorated in the last few years and had pretty much gotten to where she couldn't walk or move very much. Now she is walking in Heaven with her beloved sister, Dot, and her husband. In fact, Russell's Aunt Kathey said today that she thinks that Granddaddy (Aunt Mary's brother-in-law and Dot's husband) is driving Mama Dot and Aunt Mary around in Heaven, just like he always did here on earth.

Since Aunt Mary is now feeling no pain or sorrow and is walking with Jesus, I think it's only appropriate to post our first video of Emma's first version of walking. I certainly hope that she will one day walk on this earth...but if she doesn't, she, too, will walk with Aunt Mary in Heaven.

During all our family time today, I got some great shots of Emma with Aunt Kathey and our cousin Chesley. I especially love that Chesley and Emma are sticking their tongues out at each other.

Welcome to Holland

2011-07-11T09:49:00.000-04:00

Some of you may have heard this story before, but I just thought I would share with so many of you who haven't heard it. I have read this story on many occasions in the last year or so, but I was reminded of it again today.

“Welcome to Holland" By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And here's what my little blonde-haired, blue-eyed Dutch girl has been up to:

"Helping" me blog (by pulling out the contents of my wallet while I type)

Learning to play with Lola. No one is happier about this than Lola. Finally, a playmate.

You see me rollin'

2011-07-10T12:23:00.000-04:00

Emma got her new stander on Friday! The one she's had was a loaner, so now she has her permanent stander. Luckily, I have great insurance, so they covered the cost of the "optional" wheels to make it a mobile stander. The big wheels on the sides pop off, and they're not necessary for the stander to work. However, they make it really easy for her to move around once she figures out how to use the wheels. She was only in it for about 30 minutes Friday morning at therapy before she realized that moving the wheel a little makes HER move. I believe she will be VERY mobile VERY soon. Oh, and it's pink :) At least, as much of it is pink as possible. It looks kinda red in the pictures, but it's a sassy raspberry pink.

And here's a shot of Emma with her beloved Magee. Let me tell you something about Magee: she has some sort of quality that I don't think can be named. Before I had a baby, I just knew that dogs loved her, even my parents' little Maltese who was possessed by some sort of evil doggie spirit. She somehow knew that Magee was safe and kind. Then we had Emma. Because of all of Emma's health issues, she's not familiar with many people outside our immediate family. Except for Magee. It's not like Magee and Emma hang out one-on-one all the time, but Emma can just sense that Magee is the best friend, caregiver, and Momma (one day!) that anyone could ask for. To be perfectly honest, Magee is one of the few non-family members I'm comfortable leaving Emma with - not because I don't trust my friends, but Emma can be a scary kid to care for. But Magee....you've just got that certain something.

Please keep the family of Jamie Garrett in your prayers. We are friends with his brother, Scott, and his wife Laura. Jamie was reported missing in Vail, CO since last Tuesday, and, sadly, rescuers found his body yesterday. Jamie loved his family and had a great vacation just a few weeks ago with all the Garretts. He was a wonderful uncle to Scott and Laura's daughters, as evidenced by the pictures on Laura's blog with his nieces. God, grant his family peace and comfort.

Last thing - a look at last year: July 8, 2010

You've been outsmarted

2011-07-07T20:13:00.000-04:00

Our church had our annual 4th of July celebration; here are a couple pictures of our little patriot enjoying herself:

Now, about the title of this blog: I blogged a few weeks ago that my college roommate, Abbey, came to visit for the weekend. Abbey witnessed firsthand what many of you have only seen on the blog: Emma tossing toy after toy after toy off the tray on her stander. Emma doesn't get too upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys...that she will promptly throw on the floor....and she doesn't get upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys........you see where this is going.

The other day I came home to a package on the front steps from Amazon. I thought to myself, oh, that must be something I just ordered. (I have an addiction to Amazon. Best prices, free shipping on most baby- and non-baby items with Amazon Mom. I didn't even realize that I HADN'T ordered something.) When I opened it, I found a new toy with a note from Aunt Abbey that challenged Emma to throw THIS toy off the stander. God love her, Aunt Abbey bought Emma a Melissa and Doug toy with (drumroll, please) SUCTION CUPS. Emma doesn't even attempt to pitch it overboard.

I love Abbey Elaine Diehm Zachar!

Happy New Year!

2011-07-06T16:25:00.000-04:00

July 1 is quite possibly one of the most significant days of the year for some people. First of all, it's my mother-in-law's birthday (Happy birthday again, MJ!). Second, it was the first birthday that my grandmother spent in heaven - she would have been 101 here on earth. And finally, it's the first day of a new fiscal year for almost all government entities. I know this sounds horrendously boring, but both my personal and professional life have been revolving around July 1, 2011. Work actually gets....not easier.....let's just say less complicated for me after July 1. I won't bore you with the details. From a personal standpoint, Emma's allowable therapy hours under Medicaid start over, which means.....VITALSTIM THERAPY IS BACK!

Beginning tomorrow, Thursday, at 3:00, Emma will start her VitalStim speech therapy to try to retrain her throat muscles to swallow correctly. 7 weeks (one week break for the beach) from now, she'll have another swallow study to see if it helped. In addition to the speech therapy, we're going to try doubling the amount of OT and PT that Emma gets during the week. She currently receives 45 minutes of simultaneous OT and PT, but now we're going to do 45 minutes each of back-to-back independent OT and PT twice a week. She will get to have therapy with her new boyfriend, Chris, her all-time favorite therapist, once a week. Last Friday, Chris stopped by briefly to say hi to Emma at therapy. She pushed away from the therapist who was holding her and made an army-crawl bee line to Chris. Let's just hope he can get some good work out of her!

Emma held out until 10:00 Monday night at our church's Fourth of July celebration because there was no way she was going to sleep with all those people everywhere. Of course, the moment her head hit the car seat, she was out. Literally, out like a light in the parking lot. The last couple of days she has been a little booger for my mom, fighting sleep and just being nosy. Oh, and she wore herself out swimming in Mama Jane and Granddaddy's pool on Sunday. I anticipate that either tomorrow or Friday she will collapse and pull a Rip Van Winkle on us.

An entry from last year:

July 5, 2010

Hooray for a long (too busy) weekend!

2011-06-30T13:38:00.000-04:00

First of all, June 30, 2010

Before I take off on many, many Fourth of July weekend adventures, I'll throw up a picture of Emma - a rare moment of happiness at therapy.

Happy Fourth of July, everyone! Really, truly - God. Bless. America. We need it.

Just trying to stay cool

2011-06-28T19:50:00.000-04:00

It's been over a week since I last blogged, but not much has happened since then. We've just been trying to stay cool and keep Emma cool. She's a REALLY hot-natured baby, so she doesn't mind the pool at my parents' neighborhood at all. She enjoys it most when we take her out of her float and hold her in the water ourselves - then she can really splash it up.

Emma had therapy last week as usual, but with one major change - a man. The Care Center had to rearrange some of the therapists' schedules for the week because a couple of them were on vacation. That resulted in a little bit of a mixup for Emma's OT and PT, but it turned out to be a beautiful thing. We had Emma there for PT at 9:15, and she was a little fussy...but not as bad as she usually is. Forty-five minutes later, she was much calmer for Chris, her OT for the day. The next 45 minutes were complete bliss as she and Chris "played" quietly. Emma didn't fuss once, and...dare I say it...she enjoyed herself! Emma has always preferred men...and I mean, ALWAYS. It seems that therapy is no exception. We've had a really hard time getting Emma to behave/work during therapy because she gets cranky and just plain doesn't want to work. My mom said she did ok, but not great, yesterday with her regular therapists, but it was nothing compared to her new boyfriend, Chris. (Chris DID try to tell Emma that he's married, but she didn't care. Little homewrecker.) I'm very afraid we're going to have to make some changes in order to allow Emma to get the most out of therapy, but it makes me very sad. We like her OT a lot; if only Emma would work for her like she did Chris.

After Emma was done with therapy on Friday morning, I made a game out of pretending to toss her in the ball pit and then finally set her in it. The ball pit is used to help kids find and maintain their balance and also to develop the motor skills to catch and throw the balls. I didn't want to traumatize her, so I took her out after only a few minutes. Emma immediately wanted back in, and I grabbbed these shots:

If I hadn't had an appointment to get to, we would have stayed even longer and let Emma play. Maybe this Friday...

A look back at this week last year:

June 26, 2010

June 28, 2010

Do you ever have those days/weeks/whatever-period-of-time when you just feel blessed? I'm going through that right now, and it's wonderful. I'm stressed, and my summer work schedule doesn't allow me to do anything that I really want/need to WHEN I want to do it, our house hasn't sold, we don't have a house we want to move into, I wish Emma would stop choking, etc, etc, etc....but I just feel so loved. I feel surrounded by God's love.

This past Sunday's sermon was basically about joy vs. happiness. A light bulb came on in the middle of the sermon when I realized that Emma is proof of the Spirit living in us. Happiness is fleeting and temporary; joy is deeper and permanent and can only truly be found in the Lord. Children Emma's age are too young to knowingly seek the joy of the Lord, much less know the difference between happiness and joy. If true joy was fleeting like a temporary state of happiness is, Emma would not smile at us in the midst of choking, gasping for air, and even spitting up. That is an underlying sense of joy that can only be attributed to the Lord. I call Emma a happy baby all the time because she's so personable and loves to be out in public behaving herself yet being nosy at restaurants and shops. But she's not happy...she's joyful. I know the Holy Spirit is with her because of her permanent state of joy despite all her struggles. (Side note: our church's nursery workers probably don't believe a word of this, but I promise she will be joyful in the nursery one day. Soon? Probably not. But one day.)

A water baby

2011-06-20T21:40:00.000-04:00

Before I move on, here's a bit from last year:

June 21, 2010

Russell loves all water - the pool, the lake, waterparks, the beach...well, the ocean at least. He's not so crazy about all the sand getting all over everything. Let's just say, like father, like daughter. When we took Emma to the beach for spring break, she did NOT like the sand on her hands. Not. At. All. Emma has now also been to the pool 4 times: twice at the beach, twice at Nan and Granddad's neighborhood pool. She has enjoyed it all 4 times and is getting more and more comfortable with splashing in the pool and splashing in her bath. With every bath, she gets a little more adventurous with the water. She doesn't mind getting it in her eyes or on her face. Then the training wheels came off while getting a bath at Nan and Granddad's after going to the pool on Sunday afternoon - she went buck wild. Another one of my mommy warnings: this could be boring to some of you. I think it's cute, and it's my blog.

Good news and bad news

2011-06-17T19:53:00.000-04:00

Yesterday we went to see Dr. Troup to get the results of Emma's MRI's. It has been a year since she last had MRI's of her brain and spine. It's been a long time because we weren't sure how Emma would handle a breathing tube during the procedure. So let me start with that. Yesterday's conclusion: she does fine with the breathing tube and she is, at least for now, out of the respiratory/pulmonary woods. A year ago, we weren't sure what was going on with her breathing. Over time, we determined that it was more of a throat issue, as opposed to lungs and brain, at least when she was awake. Now we are still dealing with throat issues. Next point.

The bad news: Emma's MRI's still look bad. The good news: Emma's MRI's still look bad, emphasis on the word STILL. Emma's compressed brain stem, low spinal fluid flow, and huge cyst in her spine haven't changed, but Emma has...she is army crawling, pushing with her legs, waving her arms everywhere, and basically doing everything that these clinical issues should prevent her from doing. So that's great news! For the time being, we're not going to do anything about it. Emma's brain decompression is very dangerous, and Dr. Troup says there's a 50/50 chance that the surgery may or may not help right now. She will have to have this surgery eventually we think, but for now it's just more wait and see.

Today we went to see Dr. Morales, Emma's newest doctor. He's the neurologist who looked at her EEG. Emma is not having any type of epileptic episodes that would be causing her left foot and leg twitching. His best guess is that the twitching is caused by issues on her spine, which we kind of anticipated. The cyst on Emma's spine runs the entire length of the longest section of her spine. It would make sense that the cyst's pressure on her spinal cord could be causing the twitching...but no neurosurgeon or neurologist can ever be absolutely sure about it. Whenever Emma has the Chiari decompression surgery, she'll also have a procedure done to drain the cyst, so that's when we'd really be able to tell if the cyst is causing any kind of issues for Emma.

It's been over a week since I last blogged, so I have some catching up to do from last year:

June 9, 2010

June 13, 2010

June 16, 2010

June 17, 2010

Tonight Emma was rolling and army crawling all over the den like she normally does, and in a just a few minutes did this with the Kleenex box:

That's cold!

2011-06-08T22:18:00.000-04:00

TCBY is one of our family favorites. Emma and her entourage go there frequently as well, and Emma really enjoys frozen yogurt. We have a delicious quart of vanilla fro-yo in our fridge that we're slowly hacking away at, and tonight Emma gave us her little sign that means she wants to eat. And this is what happened when that cold yogurt touched her lips:

I know it looks like she didn't like it, but that's just the funny cold face. She kept coming back for more.

Surprise!

2011-06-07T22:01:00.000-04:00

I love surprises. When people say they hate surprises, I really, truly, deep down judge them and believe that they are not human. Ok, maybe not that extreme, but close. I apologize if this is you...but I just don't know how you can't love surprises. And I love being the orchestrator of surprises just as much as, if not more than, receiving them. So when my friend/neighbor/college roommate, Holly's, birthday was looming, I couldn't help but get the wheels turning on a devious surprise for her birthday.

During my junior and senior years of college, I lived with three other girls in apartments at Furman. Holly and Abbey were two of those roommates for both years. We now know that a handful of our OTHER friends at that time were skeptical of the three of us living together. We are all three very different, yet all very strong-willed individuals. I honestly think that some people who ran in our circle of friends were a little afraid that Furman Housing would be cleaning up the tragic remains of an apartment that had fallen victim to end-all be-all of girl fights. Wrong.

Fast forward x number of years. (We're all 30 now, let's leave it at that. Some numbers are upsetting to someone who thinks she graduated from high school "just a few years ago.") I orchestrated a surprise visit from Abbey this past weekend for Holly's birthday. Of the three of us, Abbey is the most inaccessible for a couple reasons: she has a 3-year-old and an 18-month-old (the latter of which is becoming more and more hell on wheels with each passing day), and she lives in Jacksonville. I don't blame her for being physically inaccessible. If I were in her shoes, my friends would seriously begin to wonder if Russell had dumped my body somewhere. Abbey keeps in touch via blog, email, text, etc. much better than I would. ANYWAY, the timing was just perfect, and Abbey drove up to Greenville on Saturday. Holly and her husband met me, Russell, and Emma at dinner...and SURPRISE!!

We all had such a delightful time with Abbey this weekend, and Abbey is Emma's new best friend. Seriously. She fell in love with Abbey...and why wouldn't she? When my mom came to pick up Emma Monday morning, Abbey was still at our house. My mom and Emma were loving on each other as they always do on Monday mornings after a weekend away from each other when Emma turned away from my mom and reached for Abbey. Dogs and babies have a sixth sense about who the good people are. And Lola loved Abbey, too.

Emma was feeling much more like herself this weekend, and she slept much better with her new BiPAP mask. However, the mask is very prone to leaking because the part that covers her nose is just too big. So last night we went back to the old mask because the little knot on her forehead had gone down. I think we're going to have to alternate masks from now on. Sigh. Nothing's easy.

A look back at last year: June 6, 2010

I leave you with a video of Emma cracking up with me fake-dropping and actually dropping the pendant on my necklace. I knew that if I broke it, it wouldn't matter - it was worth the gut chuckles. Emma laughs like adults do when they get REALLY tickled - you know, the laughs that are so intense that you don't even make any noise. So make sure you turn up your sound.

Who needs a routine?

2011-06-04T13:13:00.001-04:00

I both love and hate routines, for the reasons you'd probably expect. As an uptight accountant, I need order, structure, sequence, accomplishment, lists, and items checked off those lists. (This is why I hate laundry: you finish a load, check. And within hours you're no longer finished with the laundry; it has started all over with the first dirty sock. But I digress...) But as a person who also loves spontaneity (within reason), I need a shakeup - a routine gets old, boring, tired, lifeless. Boy, did we detour off the beaten path this week. I'll pick up from the last blog entry about the first MAJOR detour, Emma's MRI. And the week only got more interesting.

Detour #1: Emma woke up coughing, hacking, sniffling, and choking on Thursday morning. I stayed home from work for the morning and took her to the doctor, where we found out that she had an ear infection (first one!), in addition to some major teething, congestion from a cold or sinus infection and a sore scratchy throat from the breathing tube. The doctor said that once Emma got some Children's Advil and her antibiotic, she'd start acting like herself again. I don't know what she was talking about because was in a fantastic mood all day.

Detour #2: For about the last week, Emma hasn't been sleeping well with her BiPAP mask. It has a pressure point pad on her forehead that has left a knot that won't go away. We thought it probably hurt her, but you can't loosen the mask because air leaks out. So we got a new mask on Wednesday. Disaster. More sleepless nights, more crying. Emma's doctor on Thursday said that the air blowing through her nose probably hurts her infected ear.

Detour #3: Since Russell and Emma were both now sick, I slept on the couch Thursday night, hoping to get a little more sleep. Wrong. The sound of a crying baby in the night travels faster than the speed of light and louder than a sonic boom.

Detour #4: I worked until 6:30 Friday night, trying to get something accomplished since I was out more than I worked this week. This was the first of 11 weeks working 4 long days and off one day. I used to enjoy these summer hours, but I learned last summer that this schedule is not conducive to being a mommy.

Detour #5: Emma started acting like she felt bad on Friday - no whining or fussing (blessing!) but just lethargic. That has carried forward to this morning.

Detour #6: Emma hasn't been able to get baby food down without choking and spitting up mucus. Until FRIDAY NIGHT! Emma has started feeding herself very well, and whenever she sees someone eating and feels like trying it out herself, she puts her hands together in sign language to signify "more." Not quite the correct sign to indicate she wants to start eating, but we know what it means, as does she - and that's what matters. So she crawled up to Russell Friday night as he was eating some toast, and did the sign for "more." She cried until Russell could get another piece toasted for her, and then she devoured some toast like she had been eating normally all week. This morning she did really well with her baby food.

Detour #7: Emma slept with her new mask on like a champ last night. Sort of. She didn't cry, at least. She woke up at 2:00 am trying to get comfortable and tossed and turned for an hour without crying even one little tear. We turned the light on and realized that she couldn't breathe because her nose was congested, but she also had a throat and mouth full of saliva and mucus. Poor little girl. We took the mask off and let her sleep without it once we got her all cleaned up and suctioned out. Emma went right back to sleep, and we all slept until 7:00. So. thankful.

Emma still isn't feeling great today, and we thought she had been fighting sleep all morning. Fighting sleep is nothing out of the ordinary, but she's actually TRYING to go to sleep, but something just isn't letting her. We're not quite sure what's bothering her, but we hope she'll get a restful nap soon because we're taking her out to eat tonight. Despite all her illnesses and issues, she still manages a beautiful little smile, complete with bed head and some baby food smears on her lips. Bless her, her eyes even look tired.

It's been a while since I've posted the links to last year. Here's what I've missed:

It hurts my heart to look back at where we were this time last year, but I just have to look forward. Looking back on all that Emma has been through is no way to go through life. God truly has blessed us this far, and I have to trust that He will continue to do so.

Lots to do means less time to post

2011-06-01T19:00:00.000-04:00

It's been nearly a week since I've posted anything because our lives have been go, go, go!! Let me sum up each day since the last post:

Friday: anesthesia pre-op appointment, during which Emma pulled out all her tricks, smiles, faces, and waves to get people to pay attention to her
Saturday: chore day at home
Sunday: Russell left for the NASCAR race in Charlotte (blech. NASCAR.) Emma, my mom, and I visited relatives in Gaffney, shopped at the outlets, and ate at Cracker Barrel. At Cracker Barrel, Emma ate green beans (mashed up of course), small bites of grilled chicken tenderloin, and small bites of biscuit. She did such a great job eating adult food! Emma was exhausted but then got her second wind around 9 pm, after only napping a total of 45 minutes all day. She finally knocked out at 11:30...such an odd day for her, but she was an absolute delight nonetheless.
Monday: slept in with Emma since she was a night owl. More chores. Flipped out when Daddy came home.
Tuesday: work, work, work for me. My long summer days officially started today - around 9 or 10 hours every day for 11 straight weeks, with one day off. Play, play, play for Emma. Shriner's visit. See below.
Wednesday: BIG. DAY. MRI. See below.

As for the "see belows"...we thought Emma might have a bladder infection, which would be horrible news since one more bladder infection probably means that her bladder isn't fully emptying on its own. Emma was on antibiotics from sometime in the fall until April. If an infection came back, we were probably going to have to start cathing her every day to make sure her bladder empties. That was one thing I did NOT want to add to her list of problems. Many, many kids with spina bifida have urological issues, but so far Emma has dodged that bullet. The wonderful people at Shriner's got us in for a urinalysis (sp? too tired to look it up), which came up negative!! Jean Brown, nurse extraordinaire, commended us for calling them to check it out because overlooking a bladder infection can be catastrophic for kids with spina bifida.

Second "see below": Emma had 3 MRI's and a cerebral spinal fluid study in one visit this morning. These were scary tests not because of what they are, but because of what they required of Emma. She had to first be sedated with gas in order for an IV to be put in. That took 15 attempts. Yep, 15 red dots. 15 blue bruises. The top of both her hands, both her wrists, the inside of both her elbows, all over both her ankles. The final IV went in her right ankle. She had a breathing tube placed down her throat, and she was under anesthesia for about an hour while the MRI technicians did the scans. Then Emma was extubated and came out of the anesthesia. When they called me and Russell back to see her, she was crying and was having trouble getting a healthy breath. We could definitely tell she had had a breathing tube down her throat by the coughing, raspy crying, and sound of gook, for lack of a better word, in her throat. She got much better in about 30 minutes after being held by Daddy (probably the best medicine of all) and having a bottle. We were told she probably wouldn't be herself for 24 hours. Two hours after Emma came out of the anesthesia, she was definitely back to her old self - smiling, waving, flirting, talking, etc. What a little trooper.

We'll get the results of the MRI next Thursday when we visit Dr. Troup. He will tell us how her Chiari II malformation compares to last year, as well as the spinal fluid-filled cyst in her spinal cord. This may sound strange at first, but hear me out: my prayer is for the very dangerous, sometimes backward progress-inducing decompression surgery. I would LOVE for Dr. Troup to look at the MRI's and say, "Oh! I can solve her swallowing problems by decompressing her brain stem!" The odds of that actually happening are humanly slim, but God is the one in control of it all...so that is our prayer - that He would reveal something to Dr. Troup on those MRI films that shows Dr. Troup how to fix our sweet Emma's throat.

Oh, one more thing - Emma got a new sleep mask today because her old one has to be really, really tight to not leak any air. But now she has this little knot on her forehead from the forehead pad that won't go away :( She hasn't been as cooperative with the sleep mask in the last week, so we think it may have something to do with her bruised, knotted little forehead. Hopefully the new mask will help.

I feel as though 2 weights have been lifted: Emma doesn't have a bladder infection, and the scary experience of recovering from the breathing tube shoved down her throat is over, with a healthy baby at the end of it all. For today, at least. I know we don't have the MRI results yet, but as Matthew 6:34 says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "

Don't be afraid

2011-05-26T19:21:00.000-04:00

In addendum to my last post, I have never been to an eye doctor because I've always had 20/20 vision, as did my parents until they were in their 40's. The glasses also did not get run over by the stroller because someone didn't/couldn't see them. So don't be afraid that I'm blind as a bat and driving around town with precious cargo. I'm not. And thankful for it. That being said, it scares the bejeebies out of me to look through Russell's glasses that he wears at work and then realize that he doesnt wear them to drive. He has astigmatism, which I realize is different from plain old near- or far-sightedness...but it still confuses me that he doesn't wear them to drive. That's ok - my medical knowledge has been expanded so much in the last year that I probably can't squeeze anything else in anyway.

Emma has been tricky with her naps here lately - she never has been one to nap, and certainly not nap easily. The last few days she seems to be boycotting naps altogether. And still managing to stay up until 7 or 8 at night. I don't know if this is true, but I have a theory. 14-month-old children are active - they are walking, running, crawling everywhere, getting into everything they possibly can. In theory, Emma has the equivalent amount of energy, but not the ability to expend it as well or as efficiently. I wonder if that translates into more awake time and less of that knock-you-down fatigue that results in other kids' nice, long afternoon naps. That's my theory. Perhaps this is a question for a fellow spina bifida mom...

Tomorrow is Emma's pre-op appointment for her MRI anesthesia. I have no idea what they'll do tomorrow, except maybe take some blood. Hopefully it will be a heel stick, which she can't feel. MRI's on Wednesday, Dr. Troup on Friday, June 9, and the neurologist, Dr. Morales, on Friday, June 17. I hope that these 4 appointments will spell the end of the brain/neuro testing for a while, but if I've learned anything, it's that most doctor's appointments lead to more testing and more appointments. In case you're wondering, the only way I'm able to work and also manage these appointments is MY MOM. She's wonderful. A life-saver, my heroine. Sure, I could work and have Emma in day care. But day care doesn't meet me at the hospital and at the doctors' offices and give Emma a bath and smother her in granny kisses.

Somehow she knew

2011-05-25T20:48:00.000-04:00

Emma had to make an emergency visit to the eye doctor on Monday afternoon after her EEG because she threw her glasses onto the asphalt while we were walking Sunday night. And then someone ran over them with the stroller. One lens in particular has a significant scratch across the front. Missy, our favorite...person (I don't know what her title is), at the eye doctor told us the scratches won't hurt her vision until we come back for our previously scheduled follow-up in a few weeks. If Emma needed a new prescription, we wouldn't have to pay for new lenses. However, if she DIDN'T need a new prescription, we'd be dishing out at least $140 for new lenses. We were able to get her appointment bumped up by a few weeks to this morning, and - joy! - she needs a new prescription. We really appreciate that the doctor is sensitive to family finances - just in case Emma decides to toss the glasses again (and they are run over by a stroller again) in the next month to 6 weeks, there's no point in getting the new glasses. She doesn't actually look out of the lens where the scratch is, and we can use them for another month or so because the necessary change isn't THAT drastic. Then they'll become the spares.

I guess Emma was trying to tell us she needed a new prescription...somehow she knew. The great news is that her eyes have gotten BETTER! Adults rarely get new glasses because their eyes have improved. On kids, improvement is more common, and it's definitely what you pray for. I've never been to an eye doctor, so every appointment Emma has usually contains some sort of new information for me.

We did it!

2011-05-25T06:51:00.000-04:00

Of course we did it. Things in life are hard, but you just DO them. Sometimes you don’t know how you did them, but you just did. I have found that some things are harder than you think they’ll be. But most aren’t.

Like sleep-depriving a 14-month-old baby by keeping her up until midnight (this deserves another WE DID IT!), waking her up at 7, getting her to the hospital at 9:30, waiting for an hour and a half in various waiting rooms with her, wrapping her in a bedsheet straightjacket while cleaning 25 spots on her head, affixing electrodes to said spots, and finally letting her sleep for a mere 30 minutes at 11:30 am. It sounds awful, but in all actuality, it really wasn’t THAT bad…because Baby Emma is a little angel.

I can’t imagine a more well-behaved baby. My mother has told me on several occasions that maybe we shouldn’t have another child because they don’t get any more well-behaved than this. It would be all downhill. After Monday morning’s EEG, I believe it. Emma was a doll, and we got such great smiles out of her while we waited at the hospital and even after her 30 minute nap during the EEG (and you don’t have to be a genius to figure out that 30 minutes isn’t enough restorative sleep for an exhausted baby).

In order to keep the electrodes on Emma’s head, they put some goop on her head. The tech said it has the consistency of shortening, but it felt more like homemade icing – greasy, grainy, sugar basically. And here’s the end result:

Emma smiled and talked the whole way home, even though she was still exhausted.

We’ll get the results in the next couple of weeks, I would imagine, although I’m not that worried about it. As I’ve mentioned before, the purpose of the EEG was just to rule out seizures as the cause of Emma’s left leg and foot twitches. I looked at the readings whenever her foot twitched, and nothing really changed. You know, with all my EEG-reading experience, I’m sure it’s fine. (coughsarcasmcough)

Sunday night Emma had a good time dismantling the Sunday sale papers, as she always does. But this time, there was the extra fun of pitching them over the side of the stander. (Note: some of you may find this video slightly boring. Some parts are funny…I hope some of you appreciate it. Just warning you.)

Let’s not forget to take a look at last year’s goings-ons:
May 20, 2010
May 22, 2010
May 24, 2010

Quick and (not) Easy

2011-05-19T12:26:00.000-04:00

Around this time last year: May 18, 2010 and May 19, 2010

When we were at Dr. Troup's office on Tuesday, we learned that Emma will be having an EEG to ensure that she's not having seizures because she has some sudden, small but quick tremors/twitches in her left leg and especially her foot. He REALLY doesn't think she's having mini-seizures and that it's just an overactive reflex, but he has to be able to rule out the seizures. Dr. Troup ordered the EEG on Tuesday, and I received a call yesterday to have it scheduled. That's the quick of it.

The (not) easy of it is what it requires to GET the EEG. We knew that Emma would have to go in sleep-deprived because they need to see her brain activity both awake and asleep. Dr. Troup's scheduler questioned the EEG scheduler's instructions and still got the same answer: bring Emma in Monday morning (again, quick!) at 9:30 am, and do not allow her to sleep more than 4 hours the night before. You heard/read me. 4 hours. I could dangle Emma by her ankles in a hurricane, and she'd still be asleep. My conclusion: we'll do the best we can, even if that means being the trashy family who takes their 14-month-old to Waffle House in the middle of the night. After checking with Emma's sleep specialist on how to accomplish this impossible task, his nurse, Anne, said those instructions were incorrect. Two minutes after getting off the phone with Anne, I received a call from a veteran nurse in the neurology sleep lab with the instructions that we are to do what we think is best to bring Emma in sleep-deprived. She said that probably means depriving her of about 2 hours of sleep beyond her normal sleep time, but she doesn't know Emma. In order to get Nosy Rosy to go to sleep in a strange place with new people, her head coated in wires and goop and wrapped in gauze is going to require deprivation of about 3 to 5 hours. But still, that's heaven compared to the hell of no more than 4 hours of sleep! Praise God that we have nurses like Anne looking out for her and that I had the presence of mind to call Anne asking for help.

Yesterday was my dad's birthday, and we went to dinner at the Runway Cafe with my parents, Uncle John, Aunt Eva, Mama Jan, and John (Jan's husband, who clearly needs some sort of familial title). Emma loved on her Daddy like always, but she is getting awfully attached to Aunt Eva and Mama Jan. She played musical chairs for most of the dinner. I didn't get any pictures of Emma with the birthday boy, but she sure did enjoy herself. And she surely does love her Granddad.

On the move, literally and figuratively

2011-05-17T20:24:00.001-04:00

How do you entertain a child whose idea of entertainment is throwing down all her toys? (She really enjoys this while she's in her stander.)

We had a delightful Sunday - church, lunch from The Fresh Market (YUM), and relaxing at home. Well, Russell and Emma relaxed, while I went couponing at CVS (saved more than I spent, thank you very much). We had a church picnic Sunday night, which was delightful for everyone. During a pickup softball game, Russell hit a home run out of the t-ball field and had several church kids throwing their gloves at him - good fun for everyone, including Russell, whose only hope for hitting a home run is out of a t-ball field. Don't worry, he admitted as much to me last night. I do love him so much; what a funny guy.

BIG DAY TODAY! Emma fed herself! Emma struggles with textures, as many children with spina bifida do. She struggles a little bit more because of her unique swallowing problems, so getting her used to eating adult food is going to be a challenge. We have been starting with meltables - club crackers and some of the Gerber products designed to dissolve in babies' mouths. Emma does pretty well with these foods, but she just never had any interest in feeding herself, even when I guided her hand to her mouth. Until today! I guided her hand to her mouth a couple times, and voila! She did it herself three times after that. Baby steps. Delayed baby steps, but steps nonetheless.

We went to see Dr. Troup today for him to certify that yes, Emma's heart and lungs are fine to have general anesthesia and be intubated for her MRI. We got some more information about this procedure that will be coming up on June 1. I'm already nervous because they'll be sticking a giant breathing tube down her throat, which can make it scratchy and make her choke more. On top of that, the MRI will probably show Dr. Troup lots of things that have changed with her brain and her spine since the last one was done a year ago. Emma was a little doll at Dr. T's office, and she loved crawling up and down the exam table on the noisy paper towards Aunt Eva's cell phone.

Check out last year: May 16, 2010 and May 17, 2010

God has certainly blessed us with a smart, happy, and beautiful child. As if I didn't know it already, a sweet child is proof that God loves us.

What I love about Saturday

2011-05-14T21:57:00.000-04:00

My church

A dentist who's open on Saturdays

One of my very favorite stores

A delicious lunch, plus I found out they deliver!

Walking with Lola, Daddy, and my baby girl

A den littered with toys

A sweet puppy

Emma enjoying her stander

The picture Emma took of herself with my phone

14 oz of low-fat vanilla frozen yogurt for $1.47

A happy army-crawling Emma

A sleeping angel

Although this day, May 14, 2011 was a great day, May 14, 2010 wasn't so great.

Also, please, please keep my first cousin, Gina, and her daughters, Mary Catherine and Macon in your prayers. Gina's husband, John, passed away yesterday after a long and difficult battle with ALS, aka Lou Gehrig's Disease. John was an amazing person, and the world needs more people like him in it. He will be missed by so many.

Deep breath, much better

2011-05-13T23:03:00.000-04:00

So I've been pretty stressed out this week, and I can't really say that anything is better right at the moment. But I've felt a little bit more peace over my heart. I can partially attribute it to checking things off my to-do list, but mainly on the blessings in my life - a loving, devoted, and hard-working husband, a sweet, darling, beautiful little girl, and friends and family who care for us so much and make me laugh and smile every day.

Emma is getting SO GOOD at army crawling. She has figured out when there's something across the room that she wants, she can roll for fast action. Once she gets close to the object/person, she stops rolling and army crawls the rest of the short distance in the specific distance she needs to go.

As you've probably figured out, Emma is delayed in most areas of development. I'm going to go ahead and say all areas. For various reasons. She is babbling a lot, but I can't really say that she has said her first word. I think Russell and my mom have kidded themselves that Emma has said some meaningful words, but I seriously doubt it. Mom tells me quite often that Emma has said new words. The best was when Emma apparently said chicken like, 2 months ago. Really? Chicken? Anyway, I digress.....Emma repeats our words, but I don't think any specific words have meaning yet. Until yesterday! I'm pretty sure that "bye" is her first word. What that means to me is that she will be a mover, an achiever, an advancer, always looking ahead and saying goodbye to her past accomplishments. She's already pretty independent (when she's awake and alert...asleep and sleepy are two different stories). In the car with her, she doesn't allow you to have your elbow leaning on her car seat, nor does she want you holding her hand.

I really want Emma to be a water baby, and I think we're on our way! She doesn't mind water in her eyes, and tonight she figured out how to splash a whole lot in the tub, as opposed to just kind of touching and feeling the water.

Here's the difficult blog from this time last year: May 12, 2010

I'll leave you with this sweet picture of Emma enjoying the beautiful spring weather on my parents' porch in her birthday clothes from the Ricketts.

The delicate balance

2011-05-11T17:34:00.000-04:00

Working mothers: do you ever have those days when you are 100% certain that God never intended for mothers to work or working women to have kids? I have been oh so carefully trying to balance friendships, a social life (both with and without Emma), family time, health, sanity, sleep, WORK, church and its associated obligations (yes, I said it: obligations. Today they are obligations.), Emma's appointments, errands, the bug man, the gutter cleaner, a needy dog with a UTI, Medicaid and health insurance, and a house clean and decluttered enough to make me actually want to live in it. And would you believe that the only reward I get for trying to balance these things is insanity (temporary, I hope)?

I just cannot go into all the things that have filled our lives over the past week since I last blogged, but I will try to give you the quick and dirty. Emma loves to army crawl and whimpers to be put on the floor. She had her first VitalStim therapy on Monday, and it went as well as could be expected considering she's supposed to eat for the whole 45 minutes while 4 electrodes feel like they're tugging on her throat muscles. But that therapy has come to a screeching halt after only one treatment, thanks to Medicaid, Nikki Haley, and Tony Keck. Emma's speech therapist is working on getting it started again, but it will be another at week at least. Which is a problem because the subsequent therapy is supposed to be done within 2 to 3 days of the last one.

Mother's Day was good, but a little bittersweet for me because I just kept remembering that Emma was home from the hospital last Mother's Day. Little did we know that she was about to go back into the hospital for the some of the worst news a parent could receive. I spent last Mother's Day happy and oblivious; this Mother's Day was happy and hopeful. With a dash of desperation.

Today I have been a little sad because it was this day last year that Emma started wheezing and we took her to the pediatrician, who sent us to the hospital. It was round about 7:00 pm at the hospital that Emma's eyes rolled back in her head and she turned blue in my arms. God was good to us, though, because she was in a hospital room surrounded by nurses when it happened. See the happy events leading up to this sad day below:

May 5, 2010

May 7, 2010

May 9, 2010

May 10, 2010

PS - Sorry for such a downer blog, especially because I know there are people out there who have it much worse than I do. Tomorrow, tomorrow will be better.

Anxiety

2011-05-04T23:00:00.003-04:00

Before I forget, here's what happened last year on May 2: my dad and Larry got to see Emma for the first time! Definitely one of the best days of my life.

And here's May 3, 2010 and May 4, 2010.

The anxiety I'm referring to in the title of this blog is something that I shouldn't be worrying about right now...but I am. Some of you may remember that we banked Emma's cord blood that contains her stem cells. Sometime last fall I made contact with the mother of a 5-year-old child with spina bifida...we'll call the little girl Stella (this is one of my favorite little girl names, but Russell doesn't like it). Stella's parents banked her stem cells as well, and they finally found a hospital in northern Mexico (yes, Mexico - I don't know all the details of why) who would implant Stella's stem cells. Stella's mom keeps a blog, and this is the latest that she posted on April 15, 2011:
"I HAVE SOME GREAT NEWS!! "STELLA" IS POTTY TRAINED!! I TOTALLY ATTRIBUTE THIS TO THE STEM CELLS! Prior to stem cells "Stella" could feel her stool, but could not feel when she had to urinate. Since her stem cell procedure she can now feel when she has to pee. She has gone several days without an accident, and she can hold it until she gets on the potty. She can not fully void her entire bladder and has to push with her hand on her abdomen to help get it all out (a much better alternative to catheterizing). NO MORE DIAPERS!!!!!!!!!!!! I am so very proud of her, she works so hard. This is a MIRACLE!!!!!!!!!

Also, "Stella" has been working hard at strengthening her buttock and hamstring muscles. After a couple of weeks there is a definite difference. These are the muscles that "Stella" needs to strenghten in order to walk more. She still consistenly can take 4-5 steps on her own at at time."

So why does this stress me out a little? Because a long time ago, I felt led to bank Emma's cord blood for purposes just like this. Actually, I didn't feel led - God all but spoke aloud to me. Emma's neurosurgeon has told us that stem cells will not work on spina bifida kids' spinal cords because "that horse has left the barn," meaning that stem cells can only fix DAMAGED nerves, not nerves that were never in tact in the first place. Of course, the world used to be flat, too, right? We have many more critical hurdles to overcome right now before getting into this stem cell business, but it's in the back of my mind. I've gotten pretty good at only worrying about Emma's issues when I absolutely have to, but this one is getting to me because there's not a lot of guidance, support, history, standard operating procedure, or even geographical proximity for this particular "project"! Which means that so much of it would fall on my shoulders. And it sounds like getting support from Dr. Troup might be difficult - and that scares me because I trust him implicitly. My prayer for now is that a few more kids will get this treatment before Emma would be eligible so that there will be more results (and hopefully success!). Stella was the first one to receive the treatment in Mexico, and her mom was going to work on getting it several other kids involved. So anyway, that's what's been on my mind.

Monday night, Emma went to sleep at 8:45 and woke up at 5:30 am Tuesday morning. Not crying, not whining, but talkingtalkingjabberingjabberingtalkingtalking. With the BiPAP mask on, which I imagine can't be easy. I talked to my mom a little after 9:00 Tuesday morning, and she was still going strong. I'm afraid for me and Russell's sake that the mask is giving her better sleep, resulting in earlier wake times!

So, moving on to a much more pleasant topic: Emma crawled tonight! More than army crawling, but not quite up on her hands. She crawled on her knees and elbows, which counts, if you ask me. And I'm the mom. So I'm right.

We, unfortunately, didn't get exciting video because it totally came out of the blue. But we did get some video of something pretty funny that she has done for a while now, but she's been doing it with more gusto lately. My mom says she has a temper...and OF COURSE she has a temper. A few older family members who are no longer with us were notorious for their tempers....and they shall remain nameless. This 3-minute video is quite representative of a typical day with Emma - staring and waving at a camera (and Daddy), ignoring you when you want her to do something until SHE'S ready to do it, being inquisitive and determined, talking and grunting in her own language, clapping and doing touchdowns, and pushing Mommy/Nan/Daddy's face out of the way. All of that, in a 3-minute nutshell. And yes, that IS the Braves game in the background. I think it was the Braves. I was too busy taking care of our child to pay attention to baseball. If Russell really reads the blog like he says he does, that remark will get a rise out of him.

Tomorrow morning is Emma's swallow study to establish a baseline swallowing ability before she starts her VitalStim therapy. I feel like she's had 20 of these (I think it's actually only about 3), so I'm not all that nervous about the procedure...it's just hard to actually see liquid start to go towards her lungs in real time on a tv screen. So anyway, hopefully, she'll have improved a little on her own since the last swallow study.

That's it for tonight...long entry. That means it's bedtime.

A little farther each day

2011-05-01T15:41:00.002-04:00

Here's a quick video of Emma's recent army crawling success. She's getting a little better at it every day. She gets kinda whiny and annoyed after covering ground but still not reaching her target, whatever that may be.

We took Emma back to church this morning, and I left her crying. I'm not sure how long she cried, but they eventually got her calmed down by strolling her outside. Then she would cry when they attempted to bring her INside. She finally took a nap for about 45 minutes outside in the stroller. So I guess you could say that she did better than last week, but not a whole lot.

Emma and Daddy are taking a nap together right now, and I'd love to join them. I'm actually getting sleepy just sitting here typing. Sweet Baby Emma awoke at 6:30 this morning jabbering from the moment her little eyes opened. But, alas, no nap for me - there are groceries to buy and errands to run. Thankfully, we have supper club tonight with 2 other couples in our Sunday School class - always a good time.

And on this date in 2010

For once

2011-04-30T17:18:00.000-04:00

For once, I feel like spring has not passed us by. By "us," I mean the South. Now, granted, that also means that some vicious tornadoes came through and heartbreakingly tore apart some cities and families. As for here in Greenville, we have had some amazing spring weather without all the scary and sad stuff. Today the Young family has been taking advantage of the beautiful day and getting lots accomplished. We helped out with Hands on Greenville this morning and volunteered with Russell's company doing some yardwork at a nursing home in Easley. They didn't have a lot for us to do, so we have been catching up on all kinds of other stuff. Russell has laid out new grass seed in our back yard while I have been doing odds and ends of things inside. With the windows open. Gorgeous. Lola and Emma love to have the windows open, too.

Emma has a swallow study coming up this Thursday so that we have a benchmark for her swallowing ability before she begins her VitalStim therapy. That therapy will start week after next. I'm really excited about it, and we need desperate prayers that it will work. In addition, we need desperate prayers that it works so that the hospital will invest more time and money into the therapy for more kids who need it. I'm still working on my campaign to make this therapy available to more kids. After Emma's been doing it for about 5 weeks, I'll get back in touch with a few people to talk to them about the next step. They're not getting rid of me that easily.

I have quite a bit of catching up to do at looking back at last year. Those of you reading the blog probably could care less to read those old blog posts, but it's been very therapeutic for me personally. It's amazing to see how far we've come. But also kind of disappointing. At this point in time last year, we had no idea how dire Emma's situation really was.

April 27, 2010

April 28, 2010

April 29, 2010

April 30, 2010

Exciting news! As I've been typing this blog, Emma has realized that I have the computer on the floor with me. And her. So she rolled and rolled until she got just beyond an arm's length of the computer. And then she army-crawled! Emma started figuring out how to army crawl this week. Each and every day she gets a little bit better at it. Now don't be fooled - she's not going that far or that fast. But she's pulling her knees under her a little, too, so regular crawling won't be far. Yay! I know most parents get a little exasperated when their kids start crawling because they're suddenly mobile and into everything. I welcome mobility! Not just because it's major progress for a child with spina bifida but also because we don't have to constantly keep Emma entertained in one spot. She will be her own entertainment! Yes, she will get into things, and yes, we will have to watch her more closely, but we're ready for it. And thrilled about this exciting new blessing that seems to be just around the corner...

Happy Easter!

2011-04-26T22:27:00.000-04:00

Emma had a fantastic first Easter. I call it her first Easter because she spent last Easter laid up in the hospital on her tummy...that's no way to spend Easter. We took her to the church nursery for the first time now that cold and flu season is primarily behind us. She was fine (happy, actually) when I left her at 9:45. When I checked on her at 10:45...not so fine. Screaming her head off, actually, and I was the only one who could console her. And I don't even know if you could call it consoled...snubbing instead of screaming, really. So then I left her again and went to our 11:00 service because her only problem was sleepiness. So now the rest of the world (and by the rest of the world, I mean the nursery workers at church) know what a strong-willed little fighter we have. She fought sleep like a champ, and when I got her at 12:00, she was laid out across our friend Joe's chest. Joe had apparently been threatened within an inch of his life not to move and wake her. Sorry, Joe. Here begins Emma's training with staying in the nursery...

After church we ate lunch at my parents' house, and we got some amazing Easter pictures of Emma. There are a lot of them, so bear with me.

And on this day last year: April 26, 2010

John Deere

2011-04-26T19:37:00.000-04:00

Our nephew, Mason, loves tractors. My brother- and sister-in-law are not tractor people. But like any healthy, hearty boy, Mason loves tractors of all kinds. So on our last night at the beach, we made a deal with him: Russell told him he had a surprise for him if he behaved at dinner. What was that surprise? A visit to a place called Farm Toy Country. When Mason saw it from 15 feet away, he took off running. It was absolutely precious. I tried to get pictures of him inside the store, but most of them were blurry because he was running circles and figure 8's....it kind of reminded me of those Family Circus cartoons where the kids' chaotic moves are tracked with the dotted lines. My favorite was when I tried to take a picture of Mason and Uncle Russell, but Mason would say, "Cheese!", glance at the camera for ONE second (and only one), and then look around because he was so amazed by the store.

A few more days from April 2010

2011-04-25T16:27:00.000-04:00

April 21, 2010

April 22, 2010

April 24, 2010

It's so crazy to remember how bad Emma's infected incision was back then. I remember Dr. Troup telling us that it would be ok, and he seemed so nonchalant about it. I trusted him, but I just took what he said as him being a doctor who sees it all, and it's not really his kid anyway. But now I see why he was so....relaxed about it. He sees the kids who can't talk or breathe on their own. He sees kids who have no hope of ever standing on their own two feet, even with assistance. Let me tell you, I'd take an infected incision any day over some of the things we deal with now. But I'm trying to remember that God is good, and He loves us. Some days it's hard to feel that, but He does. He gave us a laughing, smiling, fiesty Emma who wowed the nursery workers at church yesterday with how hard she can fight sleep...and them! He has blessed us by being surrounded, smothered, and covered with loving family for a whole week, all the way up to 9pm last night. We are truly blessed.

What do you do on a cold, rainy day at the beach?

2011-04-23T10:27:00.000-04:00

Yesterday was a cold, dreary beach day, but we made the best of it. Allison went shopping, and traffic was so bad, she almost turned around and came back. I was in my PJ's until 1:00, and it was glorious. Mason didn't even go down to the beach, just to the pool once. Five out of six adults napped (including me). This is what vacation is all about - no pressure to do the things you "should" do, just as long as you enjoy yourself. We had three laptops with us, so we kept ourselves entertained...and that includes Emma in her stander. She truly looks like she's doing some serious work alongside Daddy.

We're on the way home now, sadly, but I'm excited to see Lola and get Emma all dressed up for Easter tomorrow. What a fantastic spring break it's been! We are so blessed to have such a loving family....who actually enjoys each other's company!

The pool!

2011-04-21T23:44:00.000-04:00

So after we took Emma to the beach yesterday and today, we brought her to the pool. The condo here has a heated indoor pool that is great for introducing a little one to the pool, with the exception of all the chlorine. When we first started to put Emma into the float yesterday, she screamed bloody murder, which of course was magnified 10 times by being in an indoor pool. So Russell just carried her in the water and gradually got her used to feeling the water around her. Then he put her in the float, and she seemed to enjoy it. We put her in the float today, and it went much more smoothly. We even got some smiles out of her after pushing and pulling her around the pool in it. You'll see in the last picture that she likes playing with the water in her hands.

Russell's parents came down to the beach tonight, and Mary Jane (my MIL) is now giving Russell a run for his money...Emma chose Mama Jane over Russell SEVERAL times tonight. The rest of us who have been shunned by Emma in favor of Russell think it's great that he's getting a taste of his own medicine.

Tonight Emma's eyes were really red around the edges and watery after she woke up from her nap at 6:00. She got a little more chlorinated water in her eyes today than yesterday, so I'm hoping that's all it was.

As for last year:

April 19, 2010

April 20, 2010

The beach!

2011-04-21T23:17:00.000-04:00

We are officially on Emma's first beach trip. Every summer, we go to the beach with my mother-in-law, father-in-law, brother-in-law, sister-in-law....ok, let me stop here....they're all in-laws, so just add that to the end of every relative....nephew, uncle, aunt, 2 cousins, and anywhere from 1 to 6 family friends. We have so much fun every year! Russell and I didn't go last year because I had just been off of work for 14 weeks, and we didn't really want to take Emma away from her doctors that early in the game. So here we are for spring break at my in-laws' newly purchased condo. Yesterday Emma loved the beach, as long as she was in her daddy's lap.

Side note: Emma has been unbearable when it comes to her daddy this week. If she can see or hear him, she whines and cries until he holds her. Then she turns around and boastfully grins at whatever poor soul was just holding her as she cried and pushed away towards Daddy.

Ok, so back to the beach. She loved the beach yesterday. She and Mason rode down in the wagon together, and Emma was a doll playing with her toys. Today we took her down to the beach three times, and unfortunately, we took her down right before her naps on two occasions. So we had a very cranky baby at the beach. Here are some pics of a happy baby, though:

And don't forget:

April 17, 2010

April 18, 2010

We're still around with lots to share

2011-04-21T22:48:00.000-04:00

The Type A in me is going to have to post multiple entries to relay all the recent Emma info. I just can't handle putting it all into one big entry. And no one wants to read one big entry.

So let me start with Shriner's. Last week at Shriner's, we saw Emma's urologist, neurosurgeon, and orthopedist. Emma is no longer on her antibiotics to prevent bladder infections. She's going to be tested again in a few months to make sure it hasn't come back. If the UTI DOES come back, that means her bladder isn't totally emptying, and we may have to start cathing her, which would totally depress me and probably send me into a four-day depression slumber. We told Dr. Troup that Emma's whole left leg from hip to foot twitches very quickly sometimes, so he's ordering an EEG to make sure she's not having seizures. He doesn't think she is, but he wants to make sure. The EEG involves bringing her to the hospital sleep-deprived (sleep-DEPRIVED, not sleepy). I think I'd rather play in traffic, but that seems to be the story with so many of Emma's medical tests. Her orthopedist said that Emma can stay in her stander for longer than 30 minutes each day, which is a great thing considering she LOVES it, and it's a great chance to get some housework accomplished.

The next thing I'll mention is that Emma has been accepted by the hospital for the VitalStim therapy! This was obviously one of my goals, but I'm not done. I'm not a parent they can just get off their backs simply because they offered this therapy to MY daughter. As I've said before, I feel led to be an advocate for other kids whose parents don't know how to be. I'm still working on this aspect of it....but as for Emma, she's going to have a swallow study soon and then move forward with the VitalStim therapy. She'll have this therapy twice a week for twelve weeks and hopefully be more effective at swallowing.

This is it for part one of my catch-up entry, plus a few more looks back at last year:

April 15, 2010

April 16, 2010

Time travelling

2011-04-14T11:28:00.000-04:00

Two things:

Here are the links to last year's events that I've missed the last few days:

April 11, 2010

April 12, 2010

April 13, 2010

April 14, 2010

As the focus of this particular blog entry is looking back on things that happened a year ago, I was reminded of something ridiculous that I heard this morning on HLN.

China has banned the following topics on tv/movies: elements of "fantasy, time-travel, random compilations of mythical stories, bizarre plots, absurd techniques, even propagating feudal superstitions, fatalism and reincarnation, ambiguous moral lessons, and a lack of positive thinking."

Adios, Back to the Future Parts I, II, and III! If they're banning programming with a lack of positive thinking, what about the news? Surely their news programs don't just consist of cute stories of a deer and a duck who are best friends or children who raise money to help the elderly....I would guess there's not a lot said about the tragic number of newborn baby girls who are dropped off on orphanage steps.

I (heart) weekends again

2011-04-10T21:35:00.000-04:00

Our Sunday School picnic yesterday was delightful. A little warm in the sun and a little annoying when some people were trying to take over our picnic shelter after we paid $100 for it and THEY KNEW IT....but still a great time. We were so happy to see our friends Phil and Emily's newborn baby girl, Anna Claire. She was only...

Pause in the blog.........Russell just sang a song to Emma about how many diapers he had changed compared to me today. So I stopped and said, Ok, YOU come type the blog, and I'LL change the diaper. At which point, he started laughing like a 5-year-old and covered Emma with his body so that he wouldn't have to type the blog.........I'm telling you, if he had to type this blog, Blogspot would probably remove it for lack of posting and lack of interest........anyway........

...11 days old!!! Can you believe they were able to get it together enough to bring her? I was so impressed. And Emily looks amazing. Seeing a skinny lady 11 days after birthing a baby sure lights a fire under me to lose MY baby weight!

"Tiger Woods haaaaaaaaas just finished a beer....because heeeee was just eliminated."

"Jason Daaay-ayy was eliminated. Even though he's from Austraaaalia, he married a girl from Ohio. Becaaaauuuuuse he's good at golf, he haaaaas a hot wife."

"Charl Swarandkj;ansfoi;dna; neeeeeeeds to make a par. IIIIIIIIIII hope he hiiiiiits it right in the bunker."

These are direct quotes from the song Russell is singing to Emma right now while watching the Masters. I'm cooking and blogging while my two children are playing. I (heart) weekends.

Oh, Emma has done really well sleeping with her mask at night. Last night, she only screamed for about 5 minutes when we put the mask on. Then she slept THROUGH. THE. NIGHT.

I think my blog is trying to tell me that I'm up too late. I may start the blog earlier in the day, but if I don't post it until after midnight, it dates the next day. So what looks like Saturday's entry was actually Friday's. Here is the link to April 9, 2010.
And on this day last year: April 10, 2010

I (heart) weekends

2011-04-09T00:05:00.002-04:00

God has blessed us tremendously with the most amazing church I could hope for. Our friends and relationships at church abound. Here are some shots from last weekend's escapade with some friends (confession time: envy. Look at that beautiful green grass.) We love the Traywicks and Harrises.

The essence of trouble:

Tomorrow's fun - picnic with our Sunday School class. Doesn't that sound so...cheesy and boring? Trust me, it won't be. With this crowd, it never is.

Here's a look back at last year: April 8, 2010

Mama Bear

2011-04-07T15:25:00.000-04:00

Sorry I haven't posted in a while, especially since my last post wasn't exactly uplifting. Life just gets busy, and that's all there is to it.

What have we been busy doing? Well, all the normal Emma stuff that takes up so much time. She is sleeping much better with the BiPAP mask this week than last week, with the exception of Sunday night. Last Sunday night was the worst night she's ever had with the mask. THE WORST. Since then, it has been much better. We've been putting it on her around 10 or 11 at night, and she sleeps with it on until about 6 or 7 in the morning with little fuss in the meantime. (Side note: sleeping in our bed, mind you. She'll go back to the crib eventually, but the mask is what's important right now.) And she's suddenly a tummy sleeper again. After spending the first 3 months on her stomach, I guess she needed a break from the trauma that used to be tummy time. The silver lining to Emma being in the NICU for all that time was that we got to sleep all night at home...but the BiPAP mask seems to be payback.

We took Emma to Shriner's this morning for a bladder capacity and pressure test, as well as a kidney and bladder ultrasound at Greenville Memorial. We won't know the results until we go back to Shriner's next week to meet with all the doctors.

There have been a couple battles taking up the rest of my time. One is a battle with Medicaid. Boring. The more time-consuming battle has really gotten me all riled up. There's a therapy out there called Vital Stim that adults have been receiving for years. Electrodes are placed along the jawline and throat, and patients are given food to swallow. The machine to which the electrodes are connected help retrain throat muscles to swallow. This is a very common therapy with stroke victims, brain injury victims, and the elderly. At a pediatric level, the therapy has allowed kids to come off of feeding tubes and has prevented the need for a feeding tube.

It basically requires 3 things: a certified speech therapist, a piece of equipment, and some electrodes. Our speech therapist is certified - check. The piece of equipment is at the hospital - check. Now for the electrodes. The electrodes only cost $250 for the WHOLE YEAR OF THERAPY, twice a week - no check.

Emma needs this therapy because we've reached a point where she needs to start eating food other than her bottle. She's going to have to start eating real food, and this scares all of us to death. She can choke on something easily, not to mention the fact that she has a really sensitive gag reflex and doesn't do new textures well.

Clearly, this is the therapy that Emma needs, and we've been asking for it since January/February. But we've come to a screeching halt. The hospital won't include the electrodes in their budget, and Emma's speech therapist has been told not to solicit donations for the electrodes. Oh, and parents aren't allowed to purchase the electrodes themselves. UUGGGHHH! So Mama Bear has stepped in to get this therapy approved for all kids, not just Emma. As I watch my daughter each and every day struggle to breathe and swallow, my frustration with the hospital politics and bureaucracy grows and grows. I've been told that doctors are the ones with all the power, so I'm trying to go that route, along with a few other tricks I might have up my sleeve. Apparently, $6,500 is enough to get the program up and running for a ton of kids. If this was just about Emma, I'd throw in the towel and send her to Anderson for the therapy. But there is an absurd number of kids in Greenville who desperately NEED this therapy, and they may not have parents who know how to be advocates. So I'll keep you posted on our progress. If I have to raise the money myself, I will, but hopefully we can get this going sooner than that.

I'm not quite sure yet what individual is my end target, that ONE PERSON who needs to meet Emma, watch her choke, and then flash her beautiful grin with those big blue eyes and long eyelashes. But if any of you out there know anyone at the hospital who can be influential, ESPECIALLY A DOCTOR, please write a letter! Make a phone call! This is therapy that ALL kids can receive, whether they are inpatient or outpatient, NICU (well, once they're older), PICU - ALL KIDS! If you want a little more information, send me a private message under "Leave Emma A Message!" on the left.

I know I haven't posted pictures in a while, and I DO have some to post...soon, I promise.

A stroll down memory lane

2011-04-07T14:27:00.000-04:00

April 2, 2010

April 3, 2010

April 4, 2010

April 5, 2010

April 6, 2010

April 7, 2010

Let me be honest

2011-04-03T20:31:00.003-04:00

I cleaned out my email inbox today. Those efforts primarily focused on reading and deleting the emails I receive from a spina bifida moms message board. It's quite possibly one of the best sources of information I have ever encountered. And sometimes, the saddest. These moms deal with so many things that we don't...and we deal with so many things that they don't. They have made me thankful for the wonderful doctors we have here; Emma hasn't had shunt malfunctions, revisions, infections, etc like so many other kids. We have perceptive doctors, nurses, and therapists who pick up on things that others of the same profession in different places do not. We live 15 minutes or less from emergency rooms, therapists, pediatricians, a neurosurgeon, the Shriner's Hospital, and a children's hospital. There are some moms who have to drive 15 minutes just to get to a paved road. We on this message board are consumed by our children's problems - learning delays, learning disabilities, poor eyesight, poor hand-eye coordination, low self-esteem, borderline obesity simply due to the lack of being able to move, shunt infections, shunt revisions, Chiari decompressions, tracheostomies, feeding tubes, ventilators, gag reflexes, sleep apnea, oxygen desaturations, spinal fluid cysts, spinal cord tethering, detethering surgery, scoliosis, catheterizing, bladder infections, kidney reflux, low bladder pressure, enemas, constipation, club feet, underdeveloped ankles and feet, broken legs and ankles, tendon release surgeries. Insurance premiums, non-coverage, Medicaid cuts. And this doesn't cover it all.

So I have days when I have VERY little tolerance for the complaints of others. Not because I feel I have the ultimate right to complain because of Emma's disability, but because I read about other agonies that are much worse than ours.

-- The next time you complain about how busy your job is, consider the mothers who have been forced to quit their jobs, lose their insurance, downsize their home, and rely on state-run group transportation for handicapped individuals, just so that someone can take care of their special needs child.

-- The next time your ONE child leaves you exhausted at the end of the day, consider the mothers and fathers raising twins...both with a disability.

-- The next time you agonize unnecessarily over getting pregnant, consider the family who learns that their second child is ALSO going to be born with a disability.

-- The next time you complain about your children growing out of their clothes so fast, consider the mother who cannot just purchase any kind of cute shoes or pants she wants because her child is in a wheelchair, walks with a walker, walks with leg braces, walks with ankle braces, has a trach, or has a feeding tube.

-- The next time you spend too much money on things (or high-end models of things) that your child doesn't REALLY need, consider the child who finally got a wheelchair only because her mother happened to find a child's wheelchair at Goodwill.

-- The next time you spend an excessive amount of money on yourself instead of saving it, consider the parents who will be supporting and living with their disabled child for the rest of their lives.

I'm not hurling insults at anyone specific, just at our general inability to see beyond our own "problems." Take note of the quotation marks. I swear I'm not lashing out with this blog entry, but we all have days when perspective is very much needed. Myself included. So stop what you're doing RIGHT NOW and thank God for your blessings. And be specific.

PS - I know that I have some baby weight to lose. Now that ads are on my blog to raise money for wheels for Emma's mobile stander, I don't appreciate the Weight Watchers ads that pop up. I don't need my blog to tell me to lose weight; I can see that for myself! And now that I've referenced "Weight Watchers" and "lose weight," even more of those types of ads will show up. What a vicious cycle it is.

Feeling pretty good today

2011-04-01T21:29:00.000-04:00

As I posted earlier, Dr. Gault wants us to be on the lookout for Emma to be a little bit livelier. I believe Emma DID feel better today! She was much more energetic...and....I don't know how to describe it...she's always a happy baby. But today she seemed to have more umph, and she was even happier than she usually is. So I think this BiPAP thing is really making a difference! And she's not even sleeping with it all night yet. Thank goodness we're seeing results because we have some very difficult nights behind us and ahead of us as well.

That's about all I have to report today. Plus last year's post: April 1, 2010

2011-03-31T22:38:00.000-04:00

Lemme do this before I forget:

March 30, 2010

March 31, 2010

Now that that's out of the way, I have pretty good news from Emma's sleep doctor...but before I tell you, let me give you a word of caution: Emma's sleep apnea isn't FIXED. We won't know IF it's fixed for at least another 9 to 12 months. But here's the good news: Dr. Gault is really pleased with how Emma is doing on the BiPAP. The machine has a modem that can be used to download results directly to the doctor's office and to our insurance company (they want to make sure we're actually using it since they're paying for it). Dr. Gault was amazed at how diligent we have been this early in the game. I guess most parents get frustrated and take the darn thing off. We have done that, but only after we reached our nightly time goal. Dr. Gault was also very pleased with how well Emma breathed on the machine. When she does breathe in synch with the machine, the machine is totally doing its job. Apparently, every night is getting better in terms of how Emma "gives in" to the rhythm of the machine. On top of that, she slept for 6 hours with the mask on for two nights in a row and 8 HOURS LAST NIGHT! Let's be clear: one of those nights was pure hell, but the other two weren't that bad.

After Dr. Gault's appointment, we took Emma for her one-year pictures. Even though she had not had a morning nap (which she always has, even if it's only 20 minutes), she was GREAT. Makes me wonder how much of that can be attributed to the better quality sleep...Dr. Gault told me to be on the lookout today for any improvements in behavior or lethargy. After 2:00, she was very tired and fought sleep for a very, very long time. But this evening, we went to Chic-fil-a for a Fluor-sponsored American Heart Association fundraiser, and Emma was very lively later than she usually is. We hung out with our friends Zack and Kristen, who very sweetly loved on Emma. All in all, a very good day.

Newest Addition

2011-03-29T22:54:00.000-04:00

You've probably noticed that I change the theme of my blog, sometimes just whenever I feel like it, but usually to correspond with a holiday. Well, the latest change to the blog isn't the theme - it's the ads that you see on the left sidebar. I haven't sold out. I haven't. I learned that allowing these ads to appear on my blog can actually make me a tiny bit of money, based on how many clicks originate from my blog. Any money that I make from those ads will go into a special fund for Emma's medical expenses. So if you see something that interests you over there, go ahead and click it! These ads are processed through Google and Blogspot, so they won't be trojans or worms or anything that will harm your computer.

Here are the pictures from Emma's first big tub bath that I promised to post a few days ago (side note: check out the Michelin man arms):

Congratulations to our friends Phil and Emily Watson! Their first child/baby girl, Anna Claire, was born tonight at 6:25, weighing 8 lb, 9 oz and 21 inches long (Phil and Emily - don't hate me if I didn't get the measurements exactly right, but I think that's accurate.).

One more shout out - happy birthday to my dear friend Magee. Words can't express how much Magee means to me, and today she caught up with me - 30. Hopefully 30 won't catch up with her like it has me!

On this date last year - March 29, 2010

I promise I'll post something more interesting eventually...

2011-03-28T22:28:00.000-04:00

but right now, the only interesting and new thing with Emma is the crying and throwing up on things that have to be cleaned immediately while wearing her sleep mask. Late at night. So that should explain why I pretty much only have the energy to blog about last year:

March 28, 2010

Reminiscing

2011-03-27T23:33:00.000-04:00

One year ago today!

Another Big Girl Milestone

2011-03-26T23:25:00.000-04:00

Today Emma took a bath in the big bathtub in a precious little bath seat we borrowed from the Keeleys (thanks, boys!). I think she enjoyed it. I know it probably sounds like we're a little bit late on doing the big bathtub baths, but you have to remember two things: Emma doesn't sit up that great by herself, and Russell and I only give her baths on the weekends because my mom gives them to her during the week. I have pictures, but to be honest with you, I'm exhausted...I'll post them soon.

Here are some memories from last year:

March 25, 2010

March 26, 2010

More screaming

2011-03-24T22:24:00.000-04:00

I have a feeling that for quite a while, I will be posting on the blog while Russell holds a screaming Emma with her BiPAP mask on. I hate it. It's awful. So I'll blog to occupy my time. And write thank-you notes.

Here's a look back at March 24, 2010.

One thing I love about that old blog entry is that the picture of Emma looks very, very similar to how she looks now when she's sleeping.

PS - In the middle of writing this brief blog, Emma got so worked up screaming and crying that she burped and threw up on herself, Russell, and our sheets. At 10:00 pm. No one wants to change their sheets and start a load of clothes at 10:00 at night.

My Hero

2011-03-23T22:38:00.000-04:00

Last May, Emma came home for one week...then she went back to the hospital. It was then that we learned how serious and rare the side effects of her birth defect are. Very scary stuff. In fact, most of you don't even know all the facts, all the realities, all the decisions with which we were faced. For some of that time, Russell couldn't deal with it, and I was there to be the strong one. And, conversely, for some of that time, I couldn't deal with it, and he was there to be the strong one. There were times when we couldn't even be in the room with Emma, and we had to rely on each other or another member of our family to support our little girl. I'm not ashamed of not being strong enough. If I was the only living family member who loved Emma, I would gladly (and somehow) find the strength to be there through it all. But God blessed us with an amazing family...double digits worth of people who will be strong when we can't. They are God's angels in those moments.

Last night and tonight, Russell has been that angel. Emma hates her BiPAP mask. The air is frightening, the mask is uncomfortable, and the struggle to breathe normally is agonizing. But she has to wear it and get used to it sometime. We have been told to start out gradually. Build her up. Sounds easier than it is. Emma had not actually gone to sleep wearing the mask with the air blowing and everything; we had only put it on her for shorter periods of time while she was awake, with her spending the majority of that time screaming. But when I got home from the School Board meeting last night, I found Emma fast asleep in Russell's lap wearing the mask. He tells me she fought and cried and screamed, and he wondered why he decided to try it out by himself. Tonight we tried it again, and it turns out that I can't stand it. I absolutely cannot handle my baby crying because I know what she's crying about - she's uncomfortable, confused, and can't breathe like she wants to. I have felt the air blowing through that mask, and it is NOT pleasant. But Russell came to my rescue. He doesn't like it, but he can deal with all this. He is SO the strong one through this. Emma even reached out to me for help. She NEVER reaches for anyone when Daddy is holding her. Oh, so heartbreaking. As I type this, Emma has now been on the machine for an hour and 35 minutes. She's been asleep for an hour. Russell has even volunteered to sleep on the couch or stay there as long as he needs to, just to help her learn to sleep with the BiPAP. I love him.

In other news, Emma saw Dr. Troup yesterday. How do I explain all this info....basically, Emma's sleep and swallowing issues are caused by two things. The accountant in me needs to separate these two and explain Dr. Troup's plans:
(1) Emma's brain stem could be disorganized.
Medically, there is nothing they can do to correct this. Doctors have found in recent years that kids are "growing out of" this. Specifically, there are a few kids that one of Dr. Troup's neurosurgeon friends treats who are much worse off than Emma, and they began growing out of it in early adolescence. Up until a couple years ago, it was all bad news: your child can't breathe on their own, and he/she will be on a tracheostomy (sp?) and feeding tube forever. But now I have read about kids getting their trachs out when they're 3, and Emma's not nearly that bad off because she doesn't have vocal chord paralysis...most of these other kids do. That's what makes this really hard: I have never heard of another child with Emma's symptoms. She doesn't have vocal chord paralysis and her brain DOES tell her to breathe...but she still chokes and has sleep apnea. Most kids with breathing/swallowing problems are pretty severe - asleep AND awake, much worse than Emma.

(2) Emma's brain stem is compressed.
Many times, a compressed brain stem causes problems with breathing and swallowing. Based on Emma's MRI's from last May, Dr. Troup doesn't think that Emma's sleep apnea issues are caused by the compression, but there's a chance the swallowing troubles could be caused by the compressed brain stem.

So here are these two potential causes of Emma's sleep/breathing and swallowing problems, and there's no way of knowing which it is. The only way to determine if it's the compression is to do the decompression surgery, and THIS. IS. MAJOR. That surgery is literally brain surgery. The recovery is difficult, and it can actually set kids back just by the nature of the surgery. Dr. Troup's take right at the moment is, "She's not getting worse, and I don't want to do this major surgery just to see if MAYBE that's the cause of what's going on." Ideally, the older Emma is when she has that surgery, the better she will recover. Emma is going to have an MRI and a spinal fluid flow test in 6 to 8 weeks, which will help him make a decision about what to do at that point. So we'll go back to see Dr. Troup in another 2 to 3 months, and we'll see what he says then. In the meantime, we're going to keep cruising and trying to retrain Emma's brain to breathe well when she sleeps. We're also hoping that she can start doing VitalStim therapy twice a week at the hospital, but there's some hang-up with the electrodes. This is so stupid. The hospital has the machine to do this therapy, but the actual electrodes are the problem. VitalStim therapy helps reprogram the brain and throat muscles to swallow properly. We even volunteered to pay for the electrodes ourselves, but it's not that easy.

So all that information...and I don't even know what to pray for. Can I simply ask you to just pray? For what, I don't know...God's guidance and healing of our baby is all we know to pray for. All my life I have had very specific things for which to pray, and now I have no specifics whatsoever. Wow, will that teach you to trust in the Lord. Hey, God, I have no idea what's going on right now, and no one does, so....will you....um....heal Emma, I guess?

Ok, I've bored you all to tears. If you've hung on this long, maybe you'll hang on a little longer to see what was happening with Sweet Baby Emma this time last year:

March 22, 2010

March 23, 2010

(These particular two days talk a lot about the problems we had in the NICU...even though we face different problems now, it IS kind of nice to look back and say, ahhh, we don't have to deal with THAT anymore.)

Like mother, like daughter

2011-03-21T23:48:00.000-04:00

When I was a little girl, I hated to get dirty. I despised dirt outside and usually ran into the house to have my hands washed. This probably doesn't surprise those of you who know me well. I can handle dirt well now, in its place. I have no problem getting dirty outside, but don't bring it inside. I will wipe fresh paint all over my paint clothes, but the paint must be contained. Poop in the tub? Not my favorite, but as long as the poop and poopy water stays in the tub, I can deal. At Emma's first little birthday party, she proved to be her mother's child. She really wasn't wild about putting her hands in her smash cake.

Saturday night we had a mini-party with my dad. Granddad couldn't come to Emma's first birthday party on Sunday because it ended up being at the exact same time as my grandmother's funeral. As much as the rest of us wanted to go to the funeral and visitation to honor my grandmother, I think it's very symbolic and profound to simultaneously celebrate the beginning of one life in our family while honoring the passing of another. Anyway, on Saturday night, Emma had another little cake of her own. It also was iffy.

My sister was home for Emma's birthday, so we had a delightful evening on my parents' deck, eating and enjoying the weather and each other. Emma even got to open her birthday present from John and Mama Jan.

Here are some highlights from Emma's party, including the food and decorations that my sister made. You just wouldn't believe the creativity that flows from her fingertips, and in so many genres: cooking and baking, sketching and painting, creative writing, hair and makeup, digital artistry, anonymous crafting...at one point in time, she was even a great pianist, according to my mother. Heck, she might still be. When she's home, there aren't enough hours in the day to fully explore the realm of her creativity. Oh, and she's wicked smart. (Can you tell I admire her?)

Loving on Uncle C:

If you're wondering what Russell's brother, Josh, looked like as a little boy, here he is...in the form of our nephew, Mason

Here are last year's posts from:
March 19, 2010
March 20, 2010
March 21, 2010
(Sorry, this weekend I didn't do a good job with updating the current blog with the prior year memories.)

One hundred years of strength, courage, and love

2011-03-19T00:42:00.000-04:00

My father's mother, Annie Proffitt Lemmons, passed away this morning around 7 am. She was a wonderfully strong woman, having worked all her life and raising 5 kids by herself. My grandfather passed away when my dad was only 2 years old, so she worked very hard to support her family. And I'm pretty sure my dad and his brother were a handful. She also survived the death of 8 brothers and sisters, as well as the death of her son, Mac, 30 years ago. Memaw turned 100 on July 1, 2010. She had 4 surviving children, 9 grandchildren (of which I am the youngest), 14 great-grandchildren, and I'm a little fuzzy on the great-great-grandchildren. Clearly, the family has gotten larger and larger...I'm pretty sure she had either 2 or 3 great-great-grands.

We were so blessed to be able to bring Emma to meet Memaw this past summer. Memaw has had dementia for over a decade, so she hasn't known who any of us were for quite a while. However, she still holds a special place in our hearts. When we brought Emma to see her, Memaw of course didn't know who we were or anything like that, but when she was on her way back up to her room (escorted by my aunt on my OTHER side of the family), she all of a sudden said, "Baby." And then went back to kind of mumbling. So I like to think that she felt a connection to that baby.

If you want to know how to live for 100 years, here are the things that I remember Memaw doing religiously:
(1) Being involved in her church
(2) Watching Lawrence Welk
(3) Eating half a grapefruit every day (and I mean EVERY DAY) for breakfast
(4) Snoring like a foghorn

Try these four things for a long life with lots of people to love you.

My sister came home for Emma's birthday yesterday, and she and Emma had a great day together today. Emma is very drawn to Anissa and flashed all her cutie patootie smiles. Emma's becoming a pro at holding her hands up in the air, straight as a board, when you say, "Touchdown!" She's also learning to do that at a certain part of a poem I'm teaching her. She sounded a little snotty today, so I hope she doesn't wake up with a cold.

Here's the post from March 18, 2010.

Let's be clear

2011-03-17T21:48:00.000-04:00

We are still celebratimg Emma's birthday. But since today isn't actually her birthday, I will allow some discussion of her medical developments.

Yesterday Dr. Gault, Emma's pediatric sleep specialist, called and gave me his take on the results of the hellacious sleep study from Monday night. Thank goodness he felt more positive than we did when we left Tuesday morning; if he had given me more bad news, I might would have just hurled the phone out the window. Turns out that most kids are mouth breathers, but over time (with a mask), they can become nose breathers. He wouldn't even hear of a discussion about a chin strap for at least another month. They did get a little bit of data that showed that the machine helped Emma. He had settings for us and told us that we would be contacted for Emma's very own machine. The results, as skimpy as they were, were no better and no worse than he expected. He fully expected Emma to not cooperate because she's a "peanut" (his favorite term for babies). Those are the mechanics.

Here's the emotional stuff: he told me he's worried about Emma. Not any more worried than he already was, but just concerned. He also said that Dr. Elidemir was worried (they had some sort of discussion about Emma the other day). Like I said, not any more worried than they already were, but worried because they care about her. Dr. Elidemir sees Emma monthly for Synagis shots to help protect her from RSV, and he has really enjoyed seeing her this winter. It's so comforting to know that they care so much about our baby girl personally, not just professionally.

So this afternoon, a nurse from the home health care company came by and showed us how to use Emma's BiPAP machine. It's different from a CPAP because a CPAP pushes air continuously at the same pressure. A bi-level machine like Emma's pushes air with two pressures, one for the "inhale" and one to encourage her to exhale. She exhales on her own, so she doesn't need a lot of help clearing the CO2 from her lungs. Another encouraging bit of information today is that the nurse suggested that we just spend a week putting the mask on Emma without any air at all, just to help her get used to it. She also suggested that we spend the next week just blowing air in her face from the tube to ger her used to having air blowing on her face. She encouraged us to let the mask become her toy...then it won't seem like such a foreign object when she has to wear it, and she won't associate it negatively. She did great wearing the mask for a little while today (after she got over 3 minutes of screaming), and she got a kick out of the air-blowing tube.

I still feel like I've been kicked in the gut over this apnea thing, but I've figured out how I have coped with all of the awful things that have happened to Emma in the last year. Anytime I've gotten bad news, I get upset. I mourn, I grieve. And then I reach a point (hopefully sooner rather than later) that God blesses me with the ability to focus on today and tomorrow rather than the what-ifs of three months or six months down the road. It's almost like I can shut off any of my thoughts about the future. I know that sounds horribly unhealthy, but believe me, I could work myself into a full-blown panic attack at any given moment if I let my imagination run wild. I know the long-term what-ifs; I just don't have to think about them every day. The best we can do is worry about today, and that's exactly what Jesus expects of us because He is in charge of our future. Hallelujah.

Ok, so here are some rather depressing pictures from the sleep study Monday night. We didn't get to stay in the "plush" lab that I stayed in last time, and I just felt gross. The floor was even sticky. They shoved the pediatric sleep lab into 3 hospital rooms at the end of the hall of an abandoned wing of the hospital. Yep, abandoned. It was kinda creepy walking in; I felt like I was in a weird horror movie with the words to Hotel California in the back of my head (you can check out any time you like, but you can never leave....). I'm sure they will renovate the wing at some point, but ick! in the meantime.

Last year's blog post:
Blog post from March 17, 2010

HAPPY BIRTHDAY!

2011-03-16T23:31:00.001-04:00

Today is Emma's first birthday and what an amazing day it has been. I am so, so sad that it's over. I'm not really sure why, but I'm just very sad. But we will continue to celebrate Emma's life - a day is just a day.

I'm not going to post pictures from the sleep study Monday night, and I'm not even going to tell you about the relatively positive phone call I received from Dr. Gault today (I have to keep you coming back for more). Today was not about the doctors. It was about Emma.

Emma had a great day today. I'm still exhausted from lack of sleep Monday night, so I'll keep the words short and pictures sweet. We took Emma out to lunch and also out to dinner. She loves cupcakes.

First pics of Emma on her first birthday:

Birthday lunch with the girls:

(Look at that ringlet curl on the left side of her head. Where does this curl come from??)

Get me to the food!!

Mmmmm...those cupcakes sure look good...

Now, Emma, it's not nice to point and laugh at Nan.

Unrelated to her birthday, Emma's latest trick is for you to say touchdown, and she does this:

Ok, back to the birthday shots. Dinner with Aunt Ally, Mason, Mommy, Daddy, and Nan:

Trying to take pictures with a 3- and 1-year-old...what do you expect?

All....most....there....can't....quite.....reach....

Still.....so.....close......

JACKPOT!

Emma's cousin, Mason, is just the sweetest boy, and as you can see, he really loves Baby Emma. Not Emma, mind you. BABY Emma. That's her name. So Mason was telling us tonight a story about firemen, and I asked if Baby Emma could be a fireman one day...or firewoman. Mason's response was that she would be a Fire Baby Emma. "A Fire Baby Emma?" I asked. "Yes," Mason said. "A Fire Baby Emma." He was certain this was an occupation.

All in all, a great day for my precious girl. Thank you all for the happy birthday wishes and prayers.

Here's the blog entry from one year ago:

http://babyemmayoung.blogspot.com/2010/03/baby-emma-is-here.html

In addition to the blog entry below...

2011-03-15T21:52:00.000-04:00

click link to this day last year.

Despair

2011-03-15T18:00:00.000-04:00

I'm sleep-deprived, sad, and not very hopeful. There, it's all out there. So there's the tone of this blog entry. Sorry, but it is what it is.

About last night's sleep study: After the first one showed that she has central sleep apnea (controlled by the brain), Dr. Gault immediately wanted Emma in another sleep study to figure out what particular CPAP mask and what pressure settings, etc. would be the best. That was last night, and it was one of the worst nights of our lives. When Emma chokes, it's heartbreaking, but for her - that's normal. She even smiles at us sometimes in the middle of it. But last night, she screamed for the majority of the night. I can't even tell you how pitiful and gut-wrenching it was. She had a nasal canula shoved up her nose, with a mask strapped to her face. The mask was blowing puffs of air in her nose. She just hated it; she was miserable and pitiful. Unfortunately, when she DID sleep, she breathed through her mouth, which is the opposite of what we want becasuse the mask only goes over her nose. We couldn't put the binky in her mouth to force her to breathe through her nose (and she REALLY wanted it because it's comforting to her) because she couldn't close her mouth around it because the bottom of the mask got in the way (run-on sentence, I know). We cut the binky as much as we possibly could, but it still didn't work. So then she got congested because she was crying so much. We could hear the tech puffing the air via the computer to try to establish a rhythm for Emma, but then Emma would just inhale through her mouth on her own rhythm (or lack thereof). Basically last night was pointless, except to show us that the mask didn't work at all. The only other alternative (I think) at this point is to put a chin strap on her so that her mouth is forced shut, and then she HAS to breathe through her nose. And it completely shatters me to think that we're going to have to basically force her mouth shut. I have no idea what happens next. I've done my job. Someone will get in touch with us sometime. We have a follow-up appointment with Dr. Gault on March 31, but I feel like something will happen before then.

I have pictures, but I just don't have it in me right now to upload and post them. Later.

Emma also had a CT at 10:00 this morning, as if I didn't spend enough time at the hospital last night. She was a real trooper today; actually, not a trooper - a real delight. She took a couple long naps, and my mom and I ran errands while she slept in the car for 2 hours. It really was great to spend some time with my mom and Emma. If I had sat behind my desk today, I'd probably still be facedown on it. But I drank approximately one gallon of coffee and stayed busy. That's how I survived today - my mom, my daughter, and my coffee.

I know God hasn't forsaken us and that He's still here, but sometimes I just wish He felt a little more present. Like maybe not allowing this relatively "safe" birth defect to snowball into something life-threatening. All you moms out there with healthy children, please hug them and thank God that they can swallow and breathe. I'd give anything for that right now. Be thankful for what you have. I know that some kids with spina bifida are worse off than Emma. And I am thankful that she breathes well when she's awake, that she has rolled across the den from me in the last two minutes, and that she has been saying, "Mamamamamamamamamamamama" all day.

iPhone blog

2011-03-15T01:32:00.000-04:00

I HATE typing on my iPhone (I miss you, Blackberry), so this will be short. We are at the hospital for Emma's 2nd sleep study. Tonight they'll figure out what type of mask and pressure, etc that Emma needs to help her breathe. Sounds easy enough. Except that our independent woman doesn't want to breathe on the machine's rhythm; she is breathing through her mouth at her own pace and her own depth of breath. Completely defeats the purpose of this sleep study. The technician just took the mask off of her and is just using canulas to see if that will work. I may throw myself out the window if it doesn't. We cannot endure another night such as this. Would it kill them to throw some of that happy dentist gas in a mask for the parents? I doubt it. Parents should be supplied with that stuff at a minimum, as they listen to their children scream because they can't get a good breath. If things don't work out this go-round, Emma may have to get a chin strap to keep her mouth shut when she sleeps. Sigh. Please, God, I'm begging you: pour out your grace on Emma. Literally, blow your healing breath into her.

The year in review

2011-03-12T00:51:00.000-05:00

Emma's first birthday is coming up next Wednesday, March 16. It's pretty amazing to look back at all the things we've been through. Although we've gotten some pretty tough news this week, it's therapeutic to look at what our little girl has overcome. In this spirit of looking back, I've decided to post a link every day to the blog entry from one year ago. Since I started the blog before Emma was born, I'll be posting a few links to get us caught up to today, March 11. If I forget to post a link one day, work with me. I'll get it next time.

March 6, 2010

March 9, 2010

March 11, 2010

One step forward, two steps back

2011-03-10T22:18:00.000-05:00

I think I need to change the background on this blog because anything that says lucky on it is NOT fitting. One step forward, two steps back (and I am NOT referring to a country line dance). Emma is doing great rolling over; Emma stops breathing in her sleep. Emma’s eyes are adjusting well to the glasses; her decompression surgery will most likely be moved up because of the apnea.

As you can tell, we didn’t have a great visit with the sleep doctor (Dr. Gault), and it’s only going to get worse. Emma does show signs of central apnea, but it’s not as bad as it could be. Her oxygen dropped too much during the sleep study a few weeks ago, but the good news is that her carbon dioxide (what you exhale) stayed low. That means she’s not retaining too much carbon dioxide. In the long run, this disruptive, unhealthy sleep could affect her heart; in the short run, the doctor’s not even concerned about that because we’ve caught it early. Thank goodness we decided to contact the sleep doctor; I was just curious if maybe Emma had some sleep issues. As if I needed to be reminded, always trust your instincts!

Emma’s apnea isn’t like the sleep apnea that most adults experience. A totally different beast, actually. Her brain doesn’t tell her to breathe regularly – this is central apnea. When there’s an issue with your airway or your lungs opening properly, this is obstructive apnea. Similar to patients with obstructive apnea, she will wear a mask at night; however, the mask will only blow oxygen in when she needs the air. It will allow her to breathe on her own, but if her rhythm is off, it will push oxygen in for her. The exhale pressure will be very, very low since she does this just fine on her own. The other problem that the doctor saw was that during these episodes of severe apnea, her catch-up breathing was very shallow and not very rhythmic. The short-term purpose of the mask is to help her breathe and sleep healthily; the long-term purpose of the mask is to retrain her brain on how to sleep correctly. This retraining won’t actually happen for at least 9 to 12 months. There is also a chance that it won’t “stick.” There are some not-so-great options and what-ifs later on down the road, but I just can’t go into that right now. I know what they are, and I have grieved over them; now it’s time to only worry about the present with the long-term options in the back of my mind.

Next step: another sleep study, IMMEDIATELY. On Monday night. First night sleeping with the mask on. The doctor told us that it will most likely be a 2-man job. After that, they’ll be able to tell us exactly what settings to put her little machine on. In the meantime, we have a practice mask to try to put on her for 5 minutes at a time, a few times a day. Good luck with that, right? Does anyone know of someone who would work for free all day every day and whose sole purpose in life is to keep Emma’s glasses on and help her get used to her mask? No? Just thought I’d ask.

Speaking of glasses, the ophthalmologist feels that the glasses are doing their job. I couldn’t really understand if he thought there was an improvement in her eyesight or just that they hadn’t gotten worse. After being inundated with information from 7:30 am to 9 am about the sleep issues, I’m lucky to have even remembered how to get to the eye doctor. Oh, slight bit of good news (I hope): Nan got Emma a pair of old display glasses from our sweet nurse, Misty. Missy? Missy. Anyway, Mis(s/t)y gave Emma some glasses to play with so that hopefully she won’t be tempted to play with her own. Dr. Johnson, the ophthalmologist, asked us how our day was going, and I told him it wasn’t a good day to ask. I briefly filled him in on the details of the sleep issues. As we discussed Emma’s eyes, he told us several times that Emma’s eyes are doing as well as they are because of our diligence with the glasses. He commended us for our hard work and told us to keep it up. I don’t know if he would have reiterated this point so much if I hadn’t told him what a rough day we had had, but it was nice to know that we’re doing something right to help Emma.

As for Emma herself today, she was a trooper. She was exhausted because she didn’t fall asleep until 9:45 last night. She miraculously took 2 naps yesterday for a total of 2 hours and 40 minutes, so she was a night owl last night. Needless to say, our 7:30 am appointment came early for her. If we can ever get her used to sleeping with the mask and she can actually sleep through the night with it on, Dr. Gault told us that she’ll be much more well-rested, lively, and vivacious. Oh my word. About that free help again…I don’t know if my mom and Mama Jan can survive a livelier, more vivacious Emma. Aunt Eva will be able to keep up, I believe, but I don’t know about the Grans. Mama Jan suggested that they get CPAP machines for themselves, just to be able to keep up with Emma! I also wonder if Emma will catch on to physical therapy faster and if she’ll start talking more. Lord help if she does...

Dr. Gault believes that the results of the sleep study will most likely cause Dr. Troup to move up the time frame of the decompression, maybe even sometime in the next month. Emma has a routine CT the morning after the sleep study (yep, can you believe it? Shoot me.), and then we see Dr. Troup the following week. Dr. Gault also gave me some pretty explicit instructions about notifying him anytime Emma is sedated or in the hospital. Add one more to the list.

My emotions have been on a roller coaster ride today, and to be honest with you, I’m just kind of trying to be in God’s presence rather than talk to Him. Does that make sense? I feel so defeated and exhausted that I don’t want to talk to Him about it, just BE with Him. He knows my thoughts and my feelings, and He is a faithful God who will be there just to hold me if that’s what I need. He holds Emma every day, too, so I’m just asking Him to share the love.

PS – Dr. Gault looked down Emma’s throat at her tonsils, and while he was poking around, he noticed that one of Emma’s canine teeth is coming in. Number 5, order up.