Thursday, July 20, 2017

Happy Birthday with an F-Bomb

We received Teddy's diagnosis when he was around 2 1/2 years old, after nearly two years of searching for answers from his first seizures. Along with that diagnosis, we received 2-3 medical research documents that were literally all that was known and documented about the disorder in the medical community. One of those, from the National Institute of Health, read:

Multiple congenital anomalies-hypotonia-seizures syndrome 1 (MCAHS1): An autosomal recessive disorder characterized by neonatal hypotonia, lack of psychomotor development, seizures, dysmorphic features, and variable congenital anomalies involving the cardiac, urinary, and gastrointestinal systems. Most affected individuals die before 3 years of age.

Talk about a kick in the stomach to read that when your child is 2 1/2. Our first questions back to our geneticist surrounded that life expectancy. This is the answer we received:

I do not think we have any reason to believe that this syndrome would have an impact on Teddy's life expectancy. He is overall doing extremely well, and his seizures are in good control with the Keppra. There are a very small number of patients who are known with this condition, but certainly a good number of them are older than age 3. We also do not know what the cause of death was in the individual/s who passed away at age 3 or what other complications/medical problems they had. I will investigate further and let you know if I learn anything further about this.

I'm grateful our genetic counselor provided this answer, which seemed both realistic and optimistic. I've heard horror stories of parents who were told their child would never live, walk, talk or reach a variety of milestones. We've never encountered that personally from any doctors, yet we had it printed in black and white. And, you know it must be true if you find it online ... especially when it was one of three valid search results for Teddy's diagnosis. (Yes, when Teddy was diagnosed, even Google had little to no answers for us. Seriously, three search results. When was the last time you searched for something Google couldn't find?)

Teddy takes the saying Your presence is present enough quite literally.
So, this is a rather lengthy way to say, "F-ck you!" to the medical research we received in November 2015. And happy 4th birthday to my favorite Teddy in the whole wide world.

Tuesday, July 18, 2017

One of the Reasons Why I Love MTT

I know I continue to write about MyTEAM Triumph, but the organization and people associated with it have become part of our lives. If you're curious why, here's just a few of the reasons:

  1. Teddy, and all the other captains and angels, are welcomed with open arms and are accepted for who they are.
  2. The other parents of captains get it. Last night I showed someone the Yi Home Camera we use in Teddy's bedroom. She said that his bedroom setup looks identical to her son's bedroom. That's not so often the case when your child's bed consists of a large mattress directly on the floor. 
  3. Teddy loves the trailers and trucks that hold all the racing chairs.
  4. Someone shut his vehicle doors because he said, "I know Teddy well enough to know it isn't fair to him to leave my doors open." They understand Teddy's desire to explore, are comfortable with it and help me limit the temptations for him.  
  5. Teddy loves the racing bicycle.
  6. Every time one of the women sees Teddy, she scoops him up for a hug or lets him climb in her lap. She's even sat on the ground, so she could hug him when there wasn't a different place to sit. 
  7. It's safe. Not in the sense that Teddy couldn't get hurt somehow because he's Teddy. But we won't be judged for any of Teddy's non-typical behaviors (like licking everything).
  8. Teddy loves pushing the other captains.
  9.  There's a woman there who adores Teddy, and the feeling is mutual. She scoops him up for big hugs, twirls him around and occupies him while I chat with other people.
I'm sure I'll continue to share our MTT stories in the future, but I'll leave you with these pictures someone shared from last night's run, along with their captions from Facebook:

 Omg I seriously love captain teddy. Kerry Blondheim ur son smile is just amazing

 Love ur sons adventerous soul

Monday, July 17, 2017

Birthday Shopping is Hard ... Birthday Partnies are Fun

Birthday shopping for Teddy is one of my least favorite things to do. When I told my mom this, she laughed, until I explained. It's not that Teddy is hard to buy presents for because he enjoys a number of things and likes to play with toys. It's not even that there's nothing Teddy needs because he tears through clothes like no other, and most toys help him so much more than a typical kid with furthering his skills.

Happy birthday boy opening his presents.

It's that buying a birthday present serves as a stark reminder of where Teddy is not. Rarely would any of the toys appropriate for his actual age be appropriate or of interest to him. The things he would like are geared toward a much younger age group. Dave and I used respite last year to go searching for something for his birthday, and I ended up fighting back tears as we left Toys R Us with a single baby toy. This year I went to two toy stores after work, with a specific type of lacing toy in mind, so I thought it wouldn't be bad. I left the one store disappointed they didn't carry something like what I wanted. I left Toys R Us with a bit of extra moisture in my eyes but with a different toy that I thought Teddy would enjoy. Maybe I'm just allergic to Toys R Us.

Birthday shopping is the worst. It's because it's the time to buy presents for Teddy that correlates to his age. Don't get me wrong ... Teddy turning 4 is a whole positive, remarkable blog post in its own for later this week. Birthday shopping is what sucks.

But  his birthday party didn't. Because everyone else is able to focus on what I still struggle with when birthday shopping: the amazingly happy little boy who loves people. Our family and friends found wonderful presents for Teddy including blue jeans with elastic waistbands (to hold up to his wear and tear and allow him to help dress) and hilarious shirts (about not needing sleep or naps). He has a new assortment of toys that he (and AJ) will love.

It's not his fault he's dirty. He ate dirt cake. ;-)

Teddy spent his birthday party hanging out with all the people he loves, eating delicious food and opening (most) of his own presents with the assistance of his handy helper cousins. It was so neat to watch Teddy open most of his presents because that's something that's taken quite a while for the focus and ability to come together.

So the end to this ramblings is a heartfelt thank you to those who celebrated Teddy's birthday early with us (as we're heading on vacation on his birthday). You made his day special with your presence alone, but he'll also enjoy your presents much in the months to come.

Tuesday, July 11, 2017

1, 2, 3 ... Look at Me!

Timehop on Facebook reminded us yesterday that exactly a year ago Teddy was walking 7 to 8 steps independently, without prompting. This was a huge milestone for him, yet I cannot believe it's been such a short time that he's been walking. He walks like a natural (drunk). He can maneuver turns, corners and stops before he walks into doors and walls ... most of the time. He's able to transition to different surfaces much of the time and walks across grass like a pro (football player going for the tackle). It just amazes me how much progress he's made in this one area alone in a year.

One year ago: This boy is walking 7-8 steps across a room, unbribed by us to walk, he decides to do it all on his own!!!! He is even taking slight pauses in the walk.

Yet another reminder of his progress occurred this weekend. We were walking into a store, with Dave and I on either side of Teddy holding his hands because parking lots have a lot of distractions. We counted 1, 2, 3 and then swung Teddy up in the air by his arms and landed him back on his feet. This was the first time we've ever done that, not because we never walk holding his hands but because he wouldn't have had the balance and ability to transition back to walking from flying. I think we may have created a monster now that he knows how fun it is. Maybe he'll learn how to count 1, 2, 3 from this new workout for us ...

He reached two other mini-milestones this weekend. He climbed the rock climbing wall of our playground set, which is set at an angle with rock climbing holds. Then he safely sat down and went down the slide. He's done parts of this process before and possibly even the entire process, but this was his first time flying solo without a hovering helicopter parent right there to catch him (although I was debating how fast I could fly across the yard from our garden to the playground).

The other milestone was that we removed the baby gate at the top of our basement stairs. Now, mind you, this isn't because we're completely confident in Teddy's ability to safely navigate stairs. In fact, Dave is terrified Teddy is going to try walking up or down and hurt himself ... or that Teddy will simply walk right down the stairs without realizing there's stairs there. But, we decided this was the safest route to minimize ER visits since Teddy has been attempting to scale the baby gate to go over it. He reached the point where he could get one foot hooked on top, so we removed the gate before he flipped himself over the gate and down the stairs. I'm optimistic this will help him become more aware of his surroundings that he won't just wander off the top of the stairs and I'm comfortable with him practicing some stairs walking instead of wiggling on his butt ... but I'll let you know whether the stairs or Teddy win. I'm pretty sure it will only take one ER trip for stitches before we install a half door that will buy us another year or two before Teddy figures out how to scale that.

I've said it before and will probably say it many more times, but these little things are such big things for Teddy and for us. They make my heart happy (when it starts beating again after he scares the daylights out of me).

Wednesday, July 5, 2017

Teddy's Spirit Animal

If I were to believe in reincarnation, I'd be adamant Teddy was a panda bear in a past life. When I watched this video shared by Vix on Facebook, I couldn't stop giggling. Teddy is a panda bear.

He grabs onto you and clings to you. He topples over losing his balance. He pulls your hair. He dumps any container placed in front of him. He tries to escape from where he's supposed to be. He goes where he's not supposed to go. And he looks absolutely adorable the entire time.

Now, if you need me, I'll be watching more Teddy, I mean panda bear, videos.

Friday, June 30, 2017

See You Later, Not Goodbye

The last two years have been the most consistent, best childcare we've had since we lived in Denmark. We've went through our share of sitters for the boys. We considered reformatory school after not one, but both boys got kicked out of separate childcare settings. After yet another bad experience, we tried recruiting childcare through the local university.

And we hit the jackpot. We found a nursing student who was comfortable with Teddy's history of seizures (which is why he got the boot from one daycare provider) and his disabilities. She was willing to come to our house to watch the boys, which meant they had a safe, familiar environment. She was agreeable to taking them out into the community to parks, the children's museum, etc.

Throughout the last two years, she's watched Teddy reach milestones we weren't quite sure he would hit. She's encouraged his progress, reported his new accomplishments to me and taken pride in his skills. Teddy's face lights up whenever she enters our house, addressing him as Mister. Teddy routinely tries to leave with her at the end of the day, wanting to continue his fun with her.

She's been one of a handful of people who've successfully watched our boys in the evening and has become familiar with their bedtime routine. She's administered Teddy's anti-seizure medication, monitored his temperature and ensured his safety ... as much as possible because, after all, he is Teddy.

She's played games with AJ. She's endured hundreds of questions from AJ, along with tantrums for saying no to his use of tablets or television. She's played outside with the boys at different parks. She's taken them out to eat (no easy feat by yourself). She's fed their love of ice cream (literally).

She's taken Teddy to the waterpark by herself, lugging him and an tube up the slide multiple times and redirecting him from the deep end of the pool, which is of course his newest fascination. She's recruited another friend to accompany her to the waterpark, so she could take both boys.

She's always been willing to help out when we needed it, whether for me to escape to work or for us to escape using respite. She's been flexible to come early and stay late. She's taken Teddy to his horse therapy appointment an hour away, with AJ in tow. She's taken AJ to gymnastics class with Teddy in tow.


She referred another amazing person to us who became our second childcare provider. Combined, they provided my mom with the support she needed (during finals week of all times) to watch our boys for a week while we were in the Virgin Islands. They made that experience doable for my mom, which means another trip without the boys remains within the realm of possibility.

Yet, she had the audacity to graduate from college, pass her boards, become a RN and accept a pediatric nursing position across the state. I'm so happy to see her pursuing her dreams and know she'll be a terrific nurse for any children she encounters, regardless of their needs.

At the same time, I had a hard time not crying yesterday when she left our house for the last time. She made the day as special as possible for the boys, taking them to AJ's favorite restaurant (Buffalo Wild Wings) for lunch and then to the store to pick out goodbye gifts from her. I can't help but think of the Dr. Seuss quote:

“Don’t cry because it’s over, smile because it happened.”

Now, to brace myself for our other sitter's last day next month ... 

Sunday, June 25, 2017

Teddy Likes Tractors

Another weekend in June, another dairy breakfast. Both boys enjoyed the food, especially the watermelon that we encountered here for the first time. There was an awesome collection of cute little animals including sheep, goats, chickens, ducks, llamas, cows and bunnies. Teddy got to pet a fuzzy baby bunny and a cuddly baby goat (that I would have liked to keep).

Just think ... we could create goat therapy!
 Teddy also got to sit on a few tractors, which he absolutely loved.

That smile ... that kid.

I think he's going to be sad that June Dairy Month is over ...