Saturday, October 12, 2013

You Don't Say...

I have this friend, let's call her Suzanne, who is a skilled verbal communicator. She always knows the right thing to say at the right time. She is concise and thoughtful with her words. Suzanne - without any pretenses of trying to come across as self-important - deftly uses large intellectual words in daily conversation. I've always admired her verbal prowess, as well as those of people like her who can clearly articulate their thoughts and feelings verbally.

Admittedly, I am not one of those people. I have always communicated more clearly in written form than verbal. (Example A: this blog.)  I often struggle to say the right thing at the right time, to clearly articulate what I'm thinking, and more than a few times have made many a verbal faux pas.

I recently read a blog post on one of my favorite special needs blogs in which the author, a fellow special needs mom, speaks about how she is often frustrated by people who refer to her as a good parent simply because her child has special needs. I've also come across dozens of other articles and blog posts written by special needs parents - many of which are titled "Ten Things NOT To Say To A Special Needs Parent." (Google that phrase and you'll see what I mean.)

Every time I read one of these articles I can't help but have mixed feelings. Don't all of these articles, while well-meaning, just alienate those people who attempt to verbally come into contact with us? People with good intentions, who just may not have the right words? Are we (as a group) doing ourselves a disservice?

Say this to us, but don't say this to us. Doesn't it just makes people afraid to say anything at all?

Now, unfortunately, I know that there exist some genuinely mean-spirited people out there. Like the woman who told a fellow Aicardi mother that she should keep her loud, overexuberant child at home. Or the horrible people who were subsequently kicked out of a restaurant for telling a family whose child had Down syndrome, "Special needs kids should be kept in special places."

However, these are not the folks to which I am referring. I like to assume that those truly awful "humans" are few and far between, and the majority of people out there are genuinely kind and goodhearted - or at least try to be.

So, for everyone who may come across this blog post. Please don't worry about the words that come out of your mouth.

As long as you are well-intentioned, I'm very forgiving.

Sunday, October 6, 2013

What a Whirlwind

Sadie before her VNS surgery
What a fall it has been so far! Sadie has been so busy with school starting and all of her other activities, that we simply just haven't had time to provide an update.

Sadie's VNS surgery occurred in mid-August. The surgery itself was uncomplicated, however, post-surgery was a disaster. What was supposed to be an easy recovery turned into a two day stay in the PICU due to a high heart rate, uptick in seizure activity and vomiting. Luckily, she improved enough by day two to be sent home.

She was still under the weather the following week, and thus, missed her first day of school. Then a few rough days followed and she ended up back in the ER for excessive lethargy. In the absence of all other signs, the lethargy was determined to be due to a recent increase in one of her seizure medications.

Once Sadie evened out, her VNS was turned on. Since then, we have been increasing the "pulse" of the device every two weeks. Essentially, the device "zaps" the vagas nerve on a continuous cycle - in Sadie's case, every 5 minutes. The device also comes with a magnet that can be used to "swipe" the device when we detect the onset of a seizure. We keep the magnet velcro-ed around her ankle - which we joke looks like a house arrest bracelet. We are hesitant to make an initial assessment, but so far Sadie seems to be benefitting from the VNS therapy. (I always say that with caution, because she does have a tendency to go sideways once we declare she's doing well.)
Sadie's VNS magnet.

We also got a bit of not-so-good news this month. I had noticed that she was coughing a bit more following her oral feedings. To rule out aspiration, I asked for a repeat swallow study. Well, as suspected, she is now aspirating some of her thick purees. The feeding therapists indicated that it is no longer safe to feed her orally. While this is a real disappointment, the most important thing is to keep her safe and not risk pneumonia - so she will now get the entirety of her calories via feeding tube. The therapists did say that there is a possibility that swallow skills may improve as seizures improve - so in the meantime, we are working on oral motor activities to keep those muscles strong.

Now onto some good news. This school year has been wonderful for Sadie thus far. As I've mentioned previously, she attends a school for special-needs children in Palatine, IL five days a week. I cannot say enough good things about her school. It's such a relief to know that she is cared for so well during the school day.

Tailgating at Notre Dame.
Touchdown Jesus, no thanks,
would rather sleep!
Sadie has also been growing like crazy and is quickly growing out of her pediatric wheelchair. She was just fitted for a new chair - which I'm excited to hear comes in pink! However, along with the new wheelchair fitting comes the inevitable fact that it will be much more difficult to lift this new chair in and out of the van - making the purchase of wheelchair-accessible vehicle more pressing. We are continuing conversations with local and national vendors to determine which van is best for us.

We've also been blessed in the past few months to have found a CNA who watches Sadie overnight four nights a week. As you know, sleep has never been her strong suit. We are now at 3 1/2 years of a child who doesn't sleep through the night. Unfortunately, she still has multiple seizures during the night that awaken her. Our CNA keeps a close eye on her overnight - monitoring seizure activity, changing diapers, repositioning - and awakens us if there is any problems. She has been a godsend. Who knew what a difference sleep makes!

In addition to everything else going on, we've taken Sadie out and about quite a bit these past few months. Last month, she visited Daddy's alma mater, Notre Dame, for her first tailgating experience. Despite all the talks and preparation for the visit, she decided she'd rather nap than tailgate and slept through the entire visit! We also took her back to one of her favorite places, Shedd Aquarium, to see the sea animals -
and her favorites...the jellyfish!

We are always a bit nervous as we approach cold and flu season. So, we'll do our best over the next few months to keep miss Sadie healthy. We're also hoping that the VNS therapy will continue to show good results for her seizures.