Monday, April 15, 2013

Tummy Troubles

Lucy has been healthy all winter, and that is such a blessing!  More recently, though, we've noticed a hard spot in her stomach, below her bellybutton.  Motility is an issue for kids with SMA, since they are very rarely upright, so we assumed it was a blockage and started working vigorously to move it.

Last Thursday, we took Lucy in to the hospital, since it seemed as though it was slowly growing, and our efforts weren't making much of a difference.  Lucy was comfortable, but it was bothering me.  We really, really loathe going to the hospital, especially during the cold and flu season, which is lingering - much like the nasty, cold weather.  We talked to her ped, took an x-ray, and went home.

Lucy's pediatrician is a wonderful woman, with zero of the egotistical attitude that some doctors have.  She called Dr. Schroth with Lucy's x-ray results, which showed no blockage.  Dr. Schroth recommended extra water and Miralax.

So far, no results.  Praying that this will clear up between now and her appointment in the beginning of May, otherwise they will have to prescribe something stronger.  SMA isn't just about muscles and respiratory issues - there are lots of issues that stem from those problems, and then some additional ones having to do with the nervous system and heart.  SMA is constantly having to stay on top of how your child is feeling, looking, sounding - even if they can't tell you how they feel, you have to know.  And sometimes you have to know what is going on before they even start to feel it.  SMA is all about staying ahead of the game.  Hoping we got out in front of this issue before it becomes a real problem!

On a positive note, it seems as though Lucy's new Cough Assist - a portable, 9lb, battery operated version of the 30lb, plug in version we have - has been approved!  The vague insurance speak is hard to pin down to a certain response, but we're cautiously optimistic that we will be seeing one soon!


Also, we spent today thinking about the Boston Marathon - a group of friends from the Gwendolyn Strong Foundation, including the namesake's father, Bill, ran the marathon today.  My heart dropped when I saw that the marathon had been bombed - then I saw that Bill had updated, saying that he crossed the finish line a minute before the explosion.  Our hearts and prayers are with those who were not so fortunate.

Wednesday, April 10, 2013

Just having some fun :)

Lucy could care less about thunderstorms... Bert, on the other hand, does not appreciate them.

I present the World's Most Interesting Dog:


Lucy had the rep from Tobii stop by today, to help with the eyegaze trial.  We were shown how to adapt it a little more to her needs, to maximize the possibility of our insurance approving it.  Keep us in your prayers for approval!

Tuesday, April 9, 2013

Campaign to Change Lucy's Life!

As you know, the house next to ours was destroyed by a fire.  The man who was renovating it bulldozed it, and has decided to sell the property.  This gives us the opportunity to purchase the land and expand our lot, along with building out on our first story, to make our house more adapted to life with Lucy.  We could put in a handicap bathroom, and bedrooms for Lucy and ourselves so we can continue to be near each other, but not have to carry her up and down our stairs every day.

Please take the time to read the site I've set up on Gofundme.  We are hoping to do additional fundraisers this summer, but we wanted to start by just asking for help.  We absolutely understand if you cannot afford to donate; we ask that you please consider sharing our request, so that someone who can might see it, and we also ask that you pray for God to bless this endeavor.

Now please, go help us spread the word!

Also, some pictures:

Who is at my feet?

Lucy was being very sassy the other day, and this is what she
did when I asked her to smile for a picture.  Nice, huh?

We got out in the yard yesterday to start cleaning it up.  Bert
enjoyed romping so much, he decided to bring some of the 
yard in with him.


Saturday, April 6, 2013

Eyegaze in the house!

The Tobii eyegaze was dropped off at our house yesterday, for a month-long trial.  Lucy has to use this time to practice with the device, and learn how to use it to communicate.  We need to document her use and provide data to her speech therapist, so she can submit it to our insurance.  Hopefully Lucy will show them she can use it appropriately, and it will be approved, because she deserves to have a voice.

Tonight was her first go at it since she trialed it late last fall.  There were only a few boards on it, so she was messing around, and found a button she liked :)

video

I uploaded a longer version of that to Youtube, but it wouldn't upload here.  It's basically more of the same :)  If you want to view it, click here.

Prayers would be appreciated - ask for our stubborn little miss will cooperate this month, and show those bigwigs at the insurance that she can use this device!