Out and About With Sadie

With Mommy, Daddy and Godmother
extraordinaire, Megan, at the Epilepsy 5k.

As the weather gets warmer in Chicago, I find myself out and about more with Sadie. I am always a bit apprehensive about taking her places. Primarily because I don't want her exposed to people who are sick (which is always possible when she is in a public place), and second - because I am still  learning how to answer questions about her. Now that she is looking more like a typical toddler, people tend to wonder why she isn't walking, talking, etc. - the questions we never faced when she was a baby. To add to the apprehension, now that her NG tube in in her nose, there is a visual alert of a medically complex child.

I try not to let my own apprehension deter me from taking her out. Although I do tend to have my defenses up slightly when we venture into a public place - which is new for me. It's simply not in my nature to be defensive. In fact, I joke that often times when people say mean things, I don't even realize their malintent at first. Some might call me a "Pollyanna," but I'm OK with that. I'd rather be a bit naive than assume everyone is out to get me...but I digress.

Last day in her rear-facing car seat.

Physically taking Sadie out has been a bit of a chore considering she is off the growth chart for a toddler her age. Literally, she is above the 97th percentile for length. (I suppose they'll have to adjust their scale for her :) Because she is  not yet walking, it's up to Mommy to lug her around everywhere - all 34 pounds and 36 inches. For that reason, I've been focused on keeping myself in shape so I am able to better care for her.

In addition to physically getting her out of the house, there is the additional stress of timing our outings around medicine times - or packing up medicines if needed, weighing/measuring and packing her food, and now the feeding pump, travel bag, stethoscope to check for feeding tube placement, etc.

As for our outings - I try to get her out for a walk at least once a day. She enjoys the fresh air and takes the best naps outside. Sadie also seems to enjoy shopping, and is a great shopping partner. She is quite content cruising the aisles. I think she is intrigued by the visual stimulation of shopping - lights, colors, etc. Home Goods seems to be her favorite store. This also works quite well for Mommy (much to Daddy's dismay.) The only drawback is that it's quite difficult to push a wheelchair and a shopping cart, so our purchases are limited to what can fit underneath Sadie's stroller (much to Daddy's delight.)

Because of this, grocery shopping with Sadie is nearly impossible. Although a few weeks ago, I was pleased with myself when I discovered I could push Sadie's chair at the grocery store while filling up two recyclable grocery bags over each shoulder. A drive thru grocery store in my neighborhood would be much appreciated (anyone...anyone).

Finally, there is always the chance that she could have a big seizure while we are in a public place. Her seizures are still subtle twitches that I doubt anyone would notice unless they were looking closely. However, if she does have a more intense seizure, or one that lasts longer than I am comfortable with, it means heading to the car to administer Diastat. Luckily I've only had to do this on one occasion, and fortunately I was with my sister in law at the time. The only casualty was abandoning a nearly full cart in Target.

So, despite all these deterrents, I still do take Sadie out and about quite a bit. I think she enjoys it, and I want her to have as "normal" a life as possible...and normal means getting out of the house from time to time.

An Unexpected Turn

All tuckered out from opening birthday gifts.

Raising a special needs child is often compared to a roller coaster ride. Along with the many ups and downs are unexpected twists and turns. We experienced an unexpected turn last week during Sadie's swallow study. This was Sadie's third exam to look at her swallow. Her first swallow study showed she aspirated thin liquids, and we've since been thickening her bottles using a gel called "Simply Thick."

During the swallow study, a substance called barium is added to her food. The barium lights up on the x-ray showing where the liquid is going during the swallow. (You can see a pretty cool video here.) Her therapist and doctor at the Rehabilitation Institute of Chicago ordered the swallow study to check her post-surgery swallow. We went in assuming a routine appointment - after all, she had a post-surgery bedside swallow examination in Cleveland which she passed with flying colors. She had not been getting sick and her lungs have always sounded clear (two red flags for aspirating).

However, the results showed otherwise. While drinking her bottle, even thickened, a small amount of the liquid was making it's way into her lungs during each swallow. Even at it's thickest consistency (honey thick), it was still going into her lungs.

Sadie eating her breakfast via NG tube.

Sadie was sent directly to Children's Memorial Hospital for an immediate admission and NG tube placement. (Standard protocol when a child fails a swallow study.) We were told by the pulminology team at Children's that if we had not found the aspiration, Sadie could have come down with a horrible life-threatening pneumonia. And, if she were to continue to drink, the aspiration could cause lung disease. The pulminology docs said that there are over 70 different mechanisms that must occur in the throat to ensure a safe swallow. Seems amazing that all of us aren't aspirating all the time, right?

This is what a G-Tube looks like.

So...you may ask, where does that leave Sadie? Well, there are few options for a child who aspirates. The most common being a G-Tube. Many girls with Aicardi Syndrome also have G-Tubes. In fact, one of Sadie's good Chicago Aicardi friends, Olivia, just got her G-Tube a few months ago.

In order to mentally prepare for this possible next step, we met with the surgeon this week who would perform the G-Tube operation. He provided us with pros and cons of G-Tubes. The pros being ease of medication administration, hydration, and most importantly - no aspiration. We have spoken to Sadie's team at Children's Memorial who have advised us to take our time with making this decision. They have offered to repeat a swallow study in 3-6 months to see if her swallow has improved. By that point, we can do more research and become more comfortable should the G-tube be the path she must go down.

Luckily, she is still able to eat pureed food (baby foods), so we've been feeding her her favorite keto-friendly food - mashed banana with butter. While we are disheartened and saddened by another "normal" being taken away from Sadie for the time being, we are grateful that it didn't develop into something even worse.