Sleep study

Say a little prayer for Callie (and me) tonight! She is having a sleep study at Brenners. I guess it's common for people with SMA to develop sleep apnea, so they're doing this just to see where things are at now. I'm pretty sure the results will be normal, and we've already gone through the hard part of getting all the electro thingies on her and getting her to sleep. She was really brave, with a little help from the wonderpets. Now we're just hoping she sleeps through the night and doesn't rip off any of the sensors. I'm in bed right next to her and about to try to sleep while I can!

Here's the video.  (Ignore my stupid voice.)

What's been up

I don't really feel like I am the blogging type of person (in that I don't really ever feel like doing it), but I thought it might be nice to post a little update.

Callie will be 2 in 2 months!  I can't believe it.  She is definitely starting to develop a "2-year-old" personality.  Sometimes it is just funny to see this sweet little girl try to be feisty and sometimes even mean.  And sometimes it's a scary glimpse of what's to come in the "terrible twos".  It's hard for me to know how to respond to her sometimes, because she seems to want a reaction and I don't want to give her too much of one.  And I think she's still a little too young to understand discipline or even "I'm going to take away your sippy cup if you keep throwing it on the floor".  She's starting to test her boundaries and figure things out though.

We've been going to physical therapy about once a week at Comp Rehab.  Callie was a little wary at first, but now she gets excited when we pull up to the building and she realizes where we are.  We thought about doing home therapy, and we still might in the future, but for now it's kind of fun to go to a new place and have some new surroundings to take in.  Also, we really LOVE her therapist.  Callie's been working in a motorized wheelchair the past few weeks.  It'll be a while before she can have one of her own, but it's a good opportunity for her to try it out and get used to it.  She was a little scared of it the first time, but once she figured out that it was safe, she was unstoppable!  If I can figure out how, I'll post a video from her first day in it.  We've been practicing saying "Go, go, go, go, STOP!  Hands off!"  She's more entertained by watching me put my hands up in the air then actually doing it herself, of course.  

So I posted a while back about my cousin and good friend Jessica doing a marathon to raise money for SMA research in honor of Callie.  My mom (who has also started a blog) and brother have also decided to run with her.  My sister-to-be is also going to run a half marathon at the same race!  And I think some of her family might be joining as well.  They've decided to do a marathon in Richmond, VA at the beginning of November.  I'm really excited for them (and really anxious, because the thought of running 26.2 miles makes my whole body ache).  Thank you so much to everyone who has donated to the fundraiser so far.  Every donation has been special to me!  

Well the video is taking forever to upload, so I'll add it in a new post later.

Welcome to Holland

A new friend shared this story with me and it is just wonderful. I think it really applies to life in general, so everyone may be able to relate in their own way. Welcome to Holland by Emily Perl Kingsley 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.

Running for Callie

We have had such an outpouring of love and support from so many people.  We truly appreciate each and every one of the words of encouragement that you've sent our way.  

Our wonderful friend Jessica is training to run a marathon this fall in honor of Callie.  She is working with the Gwendolyn Strong Foundation to raise money for SMA research.  She is showing a great amount of faith in the Lord to help her finish this race and to help her reach her fundraising goal.  I have faith in her and I'm so grateful for her willingness to help in any way she can.  Her fundraising page is here.  She has also written a beautiful blog entry about it here.

Since she was born, Callie has captured the hearts of our family, friends, and pretty much anyone who's met her.  She definitely has ours.  :)  Thanks again for keeping her in your prayers.

Soldier

I was listening to this song last night, and I think it pretty much sums things up.  I think this is how most mothers feel about their kids, but it's especially poignant to me right now.

Well, as you will soon be able to tell, I have no experience with blogging.  However, we have some important news, and I am not all about sharing personal feelings and information on Facebook.  This seemed like the next best way to let everyone know.  (Ok yes, there is a link to it on Facebook, but that was done in the hope that only people who really know and care about us would follow it.)

Yesterday we found out that our 18-month-old daughter Callie has a neurological disease called Spinal Muscular Atrophy.  There are a few levels of severity of this, and she has Type 2.  Because we are just learning about this, I don't know the best way to describe it, so here is a link to one of the websites that we're learning the basics from.

http://www.mdausa.org/disease/sma2.html

Most of you probably know that we've been a little concerned about Callie for a while because of her delay in gross motor skills.  As she's gotten older, the delay has become more apparent.  We recently started seeing a different pediatrician, and she has shown a lot of concern and desire to get things moving and find out what's going on.  We had a neurology appointment scheduled for March (it had been scheduled for months) and she was able to get it moved up to last week.  When we went to the neurologist, she told us that she highly suspected SMA, and we needed to do a blood test to find out.  She told us that it would take probably a month to get the results.  So, we were prepared to wait in agony for a month, and then we got a call this week telling us the results were in and that we needed to come in to talk to the doctor.  She told us the test was positive.

As much as I thought it would kill me to find out, I actually feel more at peace now than I have for the past few months.  I know this is because of all the prayers that have been sent our way for our peace and comfort.  I wish we had gotten different results, but Josh and I are both glad that now we at least have a path to follow and know a little of what to expect.  The expectations are not good.  She won't be able to walk, and in a few years she'll start losing what movement she has now.  The respiratory muscles are the next to weaken, and that is why usually people with type 2 SMA don't live past young adulthood.  Our neurologist seemed very optimistic about research that is going on.  She hoped that by the time Callie is a teenager there will be more treatment options available.  We were told that she is not one to sugar coat things, so I'm going to try to be hopeful.  I'm afraid to get our hopes up too high, but at the same time I know we can't sit passively by.  The doctor said that the best thing we can do is to stay aware of research and get involved as much as we can.

Soon we will have a whole team of doctors and experts who will be doing everything they can to keep Callie healthy for as long as possible.  One thing I know is that we will not be alone in this.  Our pediatrician and neurologist have already been so wonderful, and they will make sure we have all the resources we need to deal with this.

Now, this is one of those situations where people don't really know what to say, so they end up just saying something cliche.  One thing I've started to learn through other people's situations is that those cliches can sometimes be offensive to people who are dealing with grief.  I am going to try really hard not to be easily offended, but this is a really sensitive time for us.  I don't really feel like talking about it over and over again.  That's the main reason I'm writing this blog post.  One thing I would ask is that if you have questions, please try to find the answers for yourself before you ask us.  We probably don't know the answer.  Before yesterday's diagnosis, I had only read very basic information about SMA so I would be familiar with it and would know what questions to ask the doctor.  Even she couldn't give us really clear answers on some things.  We're going to have to learn as we go.

I'm afraid that this is going to come as a shock to some people, especially our close friends.  We literally haven't told anyone besides our families before now.  The truth is, I haven't really wanted to talk about it because I didn't really know what there was to talk about.  There were just so many questions that I didn't know how to answer.  Now I am fine with people knowing, but I still don't know all the answers.  I've been internalizing a lot of the pain and stress, and I know that I can't keep doing that.  It will take time before I'm able to talk about this freely though.  Until then, hugs are great, and prayers are even better.

I feel so amazed and blessed that Heavenly Father has given me this special daughter of His to take care of. She is such a joy in our lives.  The doctors have told us that children with this disease seem to be especially mature, smart, and good natured.  They said that really the parents are the ones that have a hard time dealing with it.  Callie couldn't have a better disposition to handle something like this.  I know that Heavenly Father loves her and has sent her to the earth to experience joy and to bless the lives of others (which she has already done considerably).  I know that He will bless her and make sure that she has a full, happy life.

I'll try to update this occasionally.  I wish I had a cute blog title, but I was running low on creativity.  So if anyone has any ideas for that (besides Josh) let me know.  Until then, thanks for all your prayers and love.

By the way, my mind is really scattered right now, and I can't really think of who all I need to send this link to.  Feel free to share this with anyone you think should know.