Monday, October 31, 2016

Happy Halloween!

Happy Halloween! I hope your day was filled with more treats than tricks. Our boys had a wonderful day, filled with candy, candy and more candy.

One of the few pics of us in costume with Teddy's hot air balloon.

Treats included:
  • AJ telling us that they visited some old people, like grandma and grandpa, who gave them extra candy. (This was his version of telling us the sitter took them to the assisted living facility where she works to go trick-or-treating.)
  • AJ's one grandma insisting he was referring to the other grandparents. So I asked him, "Old like which grandparents." His reply was "All of them."
  • Trick-or-treating with friends who helped carry Teddy's bag to score lots of candy for him, too. Just because he doesn't talk doesn't mean he won't mow through Halloween candy.
  • Teddy having a cool costume that got quite a few compliments, didn't require him to walk and get tired or be awkwardly carried and gave him built-in entertainment.
  • Two sets of our neighbors having special goodie bags for our boys. As in, bags filled with coloring books, stickers and the like, along with oodles of candy.
Tricks included:
  • Dave taking pictures of the boys ... only to discover after they went to bed that there was no memory card in the camera.
  • Teddy peeing all over while getting his diaper changed before bed.
  • AJ's endless tears from over-stimulation ... one of the things I dread about holidays.
Lesson learned:
  • Parents need to eat a good meal before they go out trick-or-treating. It would greatly help them take the tricks in stride better.

Tuesday, October 25, 2016

Gene Therapy

There was a segment on the Sunday Morning Show on CBS this weekend about using gene therapy to treat, or possibly cure, rare genetic disorders. It's absolutely amazing how far modern medicine has come that it's actually possible to remove a person's stem cells, replace the faulty gene and reintroduce the altered stem cells back into the body (via the HIV virus of all things! That part actually makes sense because it spreads throughout the entire body, and they modify the virus to ensure the person is not at risk of AIDS).

It's worth the 9 minutes of your time, so click here to watch it.

Of course, this particular treatment involved traveling to Italy for the clinical trial and returning twice a year for the trial follow-up. And it's absolutely worth it to keep your child safe from the disorder that robbed you of one of your daughters when she was 5 years old. Unfortunately, that clinical trial is no longer accepting new patients, and none are being done in the United States and may not for years to come.

This story makes me wonder if, one day, a similar therapy might be available to remove and replace the PIGN gene in children like Teddy with one that functions normally. Could it happen? Maybe. Could it give these children longer, more fulfilling lives? Maybe. Will it ever happen for Teddy? No, realistically it won't.

But that's OK. The disorder featured in this segment is one of, or similar to, the disorders we were actually warned about before we sequenced Teddy's DNA. We were told we might find out that he has this horrible childhood version of Parkinson's that has no cure and would rob him of every function before taking his life. I think that's part of the reason this story moved me so much, to see parents with fully functioning 2-year-old children lose their children in such a torturous way. Yet, the parents still found ways to move forward, to have a purpose in life. One of the families founded The Calliope Joy Foundation with the sole purpose of helping others with the same disorder that's taking their daughter from them.  What strength and grace!

Saturday, October 15, 2016

Teddy's Second Race

Less than two weeks ago, we decided we'd be sticking close to home this weekend, so I checked to see if there were any captain/angel spots still available with MyTEAM Triumph for the Africa Hope Run. Teddy immediately got a spot as a captain, and I found out this past Monday that I could join his team as well.

Dave and I headed to the race with Teddy bright and early this morning. His angels were a mother/daughter-in-law combo, along with me. They were great with Teddy, interacting with him and getting others to cheer for him along the course.

One of the neat things was Teddy practiced his high fives this race, starting with giving one to Captain Jacob before the race. Then a race volunteer asked for one, and Teddy lifted his hand all by himself for a high five. (If I sound excited, it's because we've been working on that hand motion for a long time in OT!)

Celebrity Captain Ted giving out high fives.

The best was Teddy climbing out of his chair with his big smile to finish the race. He walked holding his angels' hands with me in front to try to keep him focused. (But, Mom, there's all these people over here! I could just walk here and see them all!) He was more focused than his first race, but he gave high fives and smiles to people along the way.

It's amazing to watch all these individuals come together to participate and celebrate. There was a large group of students who came to be angels, and that group was all at the finish line cheering for Teddy when he crossed.

So happy to be walking across the finish line with his angels!
We talked with a few younger captains, likely middle-school age, and it was neat to hear what they've done with MyTEAM Triumph. I loved how one of them approached me about Teddy, "Can I ask you what he has?" I thought her question was such a thoughtful way to ask. She gave me the option not to talk about it or share Teddy's diagnosis. She didn't ask what was wrong with him. I'm sure she's gotten many appropriate and inappropriate questions through the years, so she's learned what she likes to hear.

(Funny sidenote: A 7- or 8-year-old asked Dave at swim class why Teddy needed his wheelchair. Dave's reply started with, "He has a genetic disorder ..." Dave's still working on age-appropriate answers.)

Although we didn't have our own cheering section of family or friends because we did this last minute, Teddy certainly had plenty of folks cheering for him and had an amazing time!

My favorite picture of Captain Teddy!

Thursday, October 13, 2016


One of my favorite features of Facebook has become the daily reminder of memories. It's essentially "On this day in history ..." except it's all things I wrote or pictures I shared. So many of the memories are happy or silly and bring a smile to my face. Even the one I saw a few days ago of Teddy in the dryer at 2 a.m. on one of those nights when we did a cookie decorating/explore the dryer party while he was up for 3 hours in the middle of the night.

Two years ago today I updated our family and friends with this:

"Teddy is schedule for surgery November 4 to remove a dermoid cyst from his nose. The cyst runs from the tip of his nose, through his septum, up to the lining of his brain. The doctors are unsure whether the cyst actually punctures the lining of his brain, so a neurosurgeon will be part of his team, hopefully more as a precaution than a necessity. If the cyst goes past the lining of the brain, the surgery will obviously be more complex and have much higher risk of complications. The cyst has deformed his nose, so depending on how much they have to remove to remove the cyst, he may need plastic surgery at a later time.

We expect he'll be at Children's Hospital in Milwaukee for at least three days with this surgery. It's called a nasal degloving, and it sounds lovely--a small incision at the bottom of his nose and peeling the skin back. Like taking a glove off your hand ... if his skin were the glove and his nose the hand.
This cyst was discovered by the imaging studies done after the swelling never went down when he bopped his nose. Instead of a broken nose, he had blood go into the cyst and essentially get stuck there.

As always, we appreciate your prayers. Teddy remains his smiling self and is the least affected by this news, at least until they do his surgery and make him fast again."

I remember, as much as we hoped the neurosurgeon would have nothing to do, wishing that perhaps this cyst had crossed into the lining of his brain ... only if it would be the explanation for his seizures and developmental delays. We didn't want brain surgery, but we wanted answers. If I'm being completely honest, part of us wanted to hope that not only was this cyst the explanation but that removing it could also remove Teddy's symptoms. Our ENT said it was unlikely the cyst crossed into the brain based on the imaging ... and she was right.

I remember how terrified we were to do the surgery, rightfully so because Teddy was knocked out for 7 hours while we waited and paced and waited and prayed. And then we got released from the hospital the next day, much to our surprise. (I suppose it helped Teddy's case that he was trying to stand up in his crib at midnight.) I remember being exhausted and disappointed because I heroically took the first night at the hospital with every intention of getting an awesome night of sleep while Dave spent the second night in the hospital.

But most of all, as I reread this post and all the comments people posted, I remember how much love, support, prayers and well wishes we have from all our family and friends. Teddy and our family have been included in more prayers than I could ever count ... and continue to be. What a blessing for our family!

Sunday, October 9, 2016

The Little Things

Lately, we've been spending some quality time together with Teddy around 4 a.m. each day. It seems that he's waking up and needing some love and snuggles to fall back asleep.

One morning, I noticed something for the first time.

When your ear itches, you probably scratch it exactly where it itches. I'll bet you might even stick a finger inside to scratch exactly where it itches. (*Gasp* Sorry all medical professionals!)

Apparently, Teddy's ear itched that morning. I saw him paw at his ear with his entire hand. Then I saw him rotate his hand to isolate his thumb and attempt to jab his thumb into his ear. He was fairly successful with this, which didn't surprise me because he uses his thumb for swiping tablets and smart phones. Then I saw him, just for a split second, get his pointer finger inside his ear.

Now, normally if I saw Teddy struggling like this, I would have helped him by trying to scratch the itch for him. But he was almost asleep, and I didn't want to mess with that. (He can go from sleepy to wide awake in a moment ... it's a gift for him and a curse for us as parents.)

Instead, I watched him struggle. I often recognize how hard he works to do nearly everything, but this caught me off guard. It's the little things ... little or big, things take a lot of effort and concentration for Teddy. It reminds me that what he accomplishes each day is amazing.

Maybe next time I'll risk scratching his itch for him. Then again ... maybe not. He was back asleep within 5 minutes of itch.

Thursday, October 6, 2016

Biking Boy

Teddy always enjoys climbing on (and then off ... and then on ... and then off ...) every bike we own, even the ones that are obviously too big for him. He scoots around using his feet and thinks he's pretty cool. He's also been practicing biking occasionally at physical therapy, and we've had plans to adapt a tricycle at home for him for months. (The idea is to enlarge the peddles, and secure his feet into the peddles.) The farthest we've gotten is his grandpa cut out the foot peddles for us a few weeks ago.

And then this happened today at physical therapy:

The best response was Dave's when he saw the video:

"My lil HERO!!!! I'm not sure children are suppose to inspire their parents as much as he does for me!!! Guess I got to get those foot pads on our trike!!"

Wednesday, October 5, 2016

Here's Your Happy for Today

We've been to the children's museum twice in the past two weeks, and it's been fun to see Teddy really initiating his own play and exploration. He'll crawl to what he wants to explore, but he's also really motivated to walk among the exhibits. He really enjoyed the fire engine, and I was even able to capture him walking up the ramp on video!

Walking takes tremendous effort for him. Walking uphill requires even more effort. Doing it while looking adorable ... well, that's easy.

Tuesday, October 4, 2016


One of the unique things about Teddy is that he still prefers to bunny hop as his mode of transportation. He'll crawl properly (never knew that was a thing, did ya?) sometimes, and he'll choose to walk when he wants. But bunny hopping is easiest and fastest for him, so it's what he does.

Bunny hopping is exactly what it sounds like ... it looks like he's hopping like a bunny. And he's cute like a bunny, which is why we don't call it frog hopping I guess.

Bunny hopping may move Teddy from point A to point B quickly, but it also destroys his pants. I've seen him take a brand new pair of jeans, wearing them only for the second time, and put holes in both knees in a single afternoon. Hopping around on concrete does that to jeans. In fact, Teddy is the only child I've known to have worn holes in his shorts. Two pairs this summer ... apparently they were just long enough that the fabric covered the part of his knees otherwise known as his landing pads.

The end result is we have a lot of pairs of pants with holes in the knees. Those become the clothes for up north or around the house, and I send him to school in pants that haven't been shredded yet. (That's my plan, at least until I run out.)

Coming back from up north, we stopped for ice cream. As Dave was leaving with Teddy, he overheard a table of teenage girls commenting on how cute Teddy looked with his ripped jeans.

Yes, my child is a fashionista. He's wearing the hottest trend.

It's only because his coping mechanisms for his low tone destroy his clothes, but that's beside the point. Dave now plans to sell Teddy's pants online as custom fashion jeans. At the rate Teddy works his magic, he can design a new pair every week. Dave's planning to sell them for $50/pair.

I doubt Dave will actually start his joint business venture with Teddy. But just in case you have some extra 4T pants, I could cut you a deal if you want to be a supplier for this great opportunity.

Sunday, October 2, 2016

New Skill

Tonight the boys were playing in the basement, and I noticed Teddy wearing a running medal. I asked AJ if he helped put it on Teddy. He said he hadn't and then got all excited. "Teddy has a new skill! He learned to put on running medals. That's a new skill for him!"

Now, Teddy can put things around his neck, but he usually pulls them right off. So this was sort of new for him to leave them on for a period of time. What made me chuckle was AJ celebrating this as a new skill ... not the language you hear from most 5-year-old boys. His word choice made me laugh, but his enthusiasm for Teddy's accomplishment kept the smile on my face longer.