We know all about AJ's friends, but we don't even know the names of all Teddy's classmates despite there being so few of them. (I think they're up to 8 now.) We don't know who he enjoys playing with or what he likes to do with them. But a few weeks ago, we discovered Teddy has a new friend.
Teddy has a long afternoon bus ride since school gets done at 2:45, and he gets home after 3:30 usually. He enjoys the bus and usually sat by the aide, who enjoyed his smile and praised how well he did on the bus, until he started trying to escape his harness. A few weeks ago, though, the seating arrangement changed, and Teddy now sits next to a boy named Max. Max is probably in 2nd or 3rd grade and pretty quickly melted my heart.
It started the first day when Max was so excited to sit by Teddy. It continued when each day Max tells me that he helps Teddy wave at our house as they arrive. It melted more when Max told me that they read Teddy's book together. It completely melted the day Max said, "Bye, Teddy! I'll miss you!" And it continues to melt as I see how happy both boys are ... to the point that Teddy now tries to sit back down instead of getting off the bus. (I get the impression this is a win-win because it keeps both boys occupied and content
I absolutely love that Teddy has this interaction each day with a child who accepts him for who he is and has a blast with him. That's truly my biggest aspiration for Teddy in the school setting: acceptance.
Yes, I want him to learn new skills and make incredible progress. But what's most important to me is that he's happy and accepted for who he is. I want everyone to treat Teddy the way Max does.
Thursday, November 30, 2017
Sunday, November 26, 2017
Breakfast with the Grinch
In addition to licking public toilets last weekend, we enjoyed breakfast with the Grinch. Wait, that sounds like we enjoyed licking public toilets ... Anyways, we did enjoy breakfast with the Grinch and some of our closest friends.
Both boys enjoyed their food, and Teddy did much less playing peek-a-boo under the tablecloth and trying to put his feet on the table than last year. We managed to get a tattoo on Teddy's hand, and AJ sat patiently for the most incredible face painting he's ever had (a very detailed penguin). We got a good picture of the kiddos with the Grinch, thanks in part to our friends who put more people between Teddy and the Grinch and helped corral Teddy on the bench for a few quick photos. Teddy is intrigued by costumed characters, but he only likes them on his terms, which means he typically won't sit near them.
After that, we got in line for a horse-drawn wagon ride. The kiddos ran around while I held our places in line, and we miraculously got all four children in the photo display at the same time. Funny thing is Teddy is the one who was smiling and looking at the camera the best.
Teddy absolutely loved the wagon ride. I think he's particularly fond of horses since he does hippotherapy a couple times a month. He had a huge grin on his face for nearly the entire ride and was bouncing on my lap to show his excitement.
It was a fabulous day with friends, including the part when we headed to our house for some baking while the children entertained each other.
Both boys enjoyed their food, and Teddy did much less playing peek-a-boo under the tablecloth and trying to put his feet on the table than last year. We managed to get a tattoo on Teddy's hand, and AJ sat patiently for the most incredible face painting he's ever had (a very detailed penguin). We got a good picture of the kiddos with the Grinch, thanks in part to our friends who put more people between Teddy and the Grinch and helped corral Teddy on the bench for a few quick photos. Teddy is intrigued by costumed characters, but he only likes them on his terms, which means he typically won't sit near them.
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| I love that there's one child by the Grinch and the other two appear to be at Breakfast with Teddy. |
After that, we got in line for a horse-drawn wagon ride. The kiddos ran around while I held our places in line, and we miraculously got all four children in the photo display at the same time. Funny thing is Teddy is the one who was smiling and looking at the camera the best.
 |
| How Teddy is one of two looking at the camera is beyond me. |
Teddy absolutely loved the wagon ride. I think he's particularly fond of horses since he does hippotherapy a couple times a month. He had a huge grin on his face for nearly the entire ride and was bouncing on my lap to show his excitement.
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| Hey, he can't look at the camera all (or most of) the time! |
It was a fabulous day with friends, including the part when we headed to our house for some baking while the children entertained each other.
Tuesday, November 21, 2017
Don't Lick That!
That, my friends, is probably the last thing you want to hear in a public restroom.
That, my friends, is exactly what I heard Sunday in the restroom at the local museum.
Here's what happened. I had the audacity to need to pee while in public (which happens due to my love of tea with caffeine to keep up the constant motion that is my wonderful children). Teddy came in the stall with me, while AJ went in the stall next to us. All was fine until I decided that I should actually use both hands to pull up and button my pants. (I know. What was I thinking? I mean, seriously, I learned how to do that with one hand after I lit my left hand on fire and couldn't use it for months.)
That's when Teddy slithered under the stall to visit AJ. I wasn't overly concerned since he was only peeping on his brother until I heard, "Teddy! Don't lick that!" I peered through the crack to see Teddy with his open mouth on the toilet. (Excuse me while I gag yet again.)
I immediately coached AJ to not just tell Teddy that but remove his mouth from the toilet, which AJ did by pushing Teddy back into the stall. I promptly pulled him from underneath the stall and vowed to never kiss him on the mouth again ... or at least until I forget this incident occurred.
That, my friends, is just another day with Teddy. (Hope you weren't eating when you read this.)
That, my friends, is exactly what I heard Sunday in the restroom at the local museum.
Here's what happened. I had the audacity to need to pee while in public (which happens due to my love of tea with caffeine to keep up the constant motion that is my wonderful children). Teddy came in the stall with me, while AJ went in the stall next to us. All was fine until I decided that I should actually use both hands to pull up and button my pants. (I know. What was I thinking? I mean, seriously, I learned how to do that with one hand after I lit my left hand on fire and couldn't use it for months.)
That's when Teddy slithered under the stall to visit AJ. I wasn't overly concerned since he was only peeping on his brother until I heard, "Teddy! Don't lick that!" I peered through the crack to see Teddy with his open mouth on the toilet. (Excuse me while I gag yet again.)
I immediately coached AJ to not just tell Teddy that but remove his mouth from the toilet, which AJ did by pushing Teddy back into the stall. I promptly pulled him from underneath the stall and vowed to never kiss him on the mouth again ... or at least until I forget this incident occurred.
That, my friends, is just another day with Teddy. (Hope you weren't eating when you read this.)
Thursday, November 16, 2017
Are You Feeling Brave?
That was the question posed by Teddy's neurologist at his appointment last week, after he greeted us and asked Teddy how he was doing.
Seriously, he is the best neurologist. Even when our appointments are months or even a year apart, he walks in and greets each of us by name. He talks directly to Teddy and then uses his parrot Jabber to help with his examination of Teddy while checking his belly for Tigger and Pooh Bear. He's approach is amazing, not to mention that he knows his stuff and can explain things to us in a way that makes sense without making us feel stupid.
The reason for this neurology appointment was to determine whether we wean Teddy off Keppra, his anti-seizure medication. We had discussed it at his appointment in May but wanted to hold off past our 3-week vacation to the remote parts of our country. Now, in the midst of cold, flu and every other bug, we were faced with the decision.
Teddy hasn't had a seizure since June 22, 2015. That's a long time, which means perhaps his body has adjusted to be better able to handle that things (like fevers and illnesses) that caused seizures in the past. Or perhaps any seizure activity is simply prevented by the Keppra. The only way to know is to remove the Keppra and do an extended EEG to see what's going on inside that mind of his. (If only! At least the EEG is designed to see if seizure activity occurs.)
We decided to be brave, with a plan to wean him off Keppra gradually over four weeks. After one week of no Keppra, then we'll head in for ideally a 48-hour EEG. We'll be in the hospital basically for as long as Teddy will tolerate it. A standard EEG has a response rate under 50%. A 24-hour EEG has a response rate around 80%. A 48-hour EEG has a response rate around 93%. EEGs done at home have so much additional feedback that they aren't considered nearly as accurate.
Of course, when we got home from the neurology appointment, we discovered Teddy had a fever over 100 degrees. I think God has a sense of humor. Teddy stayed home from school that day but rallied to be well enough to head to school Friday. Saturday he developed croup. Seriously, God either has a sense of humor or is testing our resolve.
We will continue with the plan to discontinue Keppra, but we're waiting a few more days until he's over this crud. Then time will tell ... but I can't deny the thought of another seizure is terrifying. I'm hoping and praying I won't be making that type of post for a long, long time. Like ever. But I'm enough of a realist to know that it likely will happen someday.
I still can hope someday is a long time in the future.
Seriously, he is the best neurologist. Even when our appointments are months or even a year apart, he walks in and greets each of us by name. He talks directly to Teddy and then uses his parrot Jabber to help with his examination of Teddy while checking his belly for Tigger and Pooh Bear. He's approach is amazing, not to mention that he knows his stuff and can explain things to us in a way that makes sense without making us feel stupid.
The reason for this neurology appointment was to determine whether we wean Teddy off Keppra, his anti-seizure medication. We had discussed it at his appointment in May but wanted to hold off past our 3-week vacation to the remote parts of our country. Now, in the midst of cold, flu and every other bug, we were faced with the decision.
Teddy hasn't had a seizure since June 22, 2015. That's a long time, which means perhaps his body has adjusted to be better able to handle that things (like fevers and illnesses) that caused seizures in the past. Or perhaps any seizure activity is simply prevented by the Keppra. The only way to know is to remove the Keppra and do an extended EEG to see what's going on inside that mind of his. (If only! At least the EEG is designed to see if seizure activity occurs.)
We decided to be brave, with a plan to wean him off Keppra gradually over four weeks. After one week of no Keppra, then we'll head in for ideally a 48-hour EEG. We'll be in the hospital basically for as long as Teddy will tolerate it. A standard EEG has a response rate under 50%. A 24-hour EEG has a response rate around 80%. A 48-hour EEG has a response rate around 93%. EEGs done at home have so much additional feedback that they aren't considered nearly as accurate.
Of course, when we got home from the neurology appointment, we discovered Teddy had a fever over 100 degrees. I think God has a sense of humor. Teddy stayed home from school that day but rallied to be well enough to head to school Friday. Saturday he developed croup. Seriously, God either has a sense of humor or is testing our resolve.
We will continue with the plan to discontinue Keppra, but we're waiting a few more days until he's over this crud. Then time will tell ... but I can't deny the thought of another seizure is terrifying. I'm hoping and praying I won't be making that type of post for a long, long time. Like ever. But I'm enough of a realist to know that it likely will happen someday.
I still can hope someday is a long time in the future.
Monday, November 13, 2017
Diagnosis Day
Two years ago today Teddy was diagnosed with Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1. That 3-hour genetics appointment changed our lives. We left with a completely unexpected diagnosis, one that had only been discovered 4 years earlier. We were told Teddy was the 15th person in the world as far as they could tell from research. We were given about 15 pages of medical research, which was about all they knew about his diagnosis.
We told my aunt his diagnosis because she was at the appointment occupying AJ for that incredibly long appointment (which really isn't all that long when you're trying to remember high school biology and process that your child has an incredibly rare diagnosis). But as we left, we determined we weren't telling anyone, including our parents, his diagnosis until the geneticist clarified the life expectancy not to exceed three years that we saw in the research papers. Somehow, they missed addressing piece despite Dave asking about long-term prognosis.
We headed up north after that appointment, and I took a long walk with Teddy on my back, sobbing the entire time. The memories, fears, guilt, lost dreams and all that jumble of emotions comes back to me as I type this.
It took at least a month to start wrapping our arms around the diagnosis. We often said we had a name, but it didn't change much of anything. That wasn't completely true. Having this diagnosis dashed our dreams ... until we learned to accept our new normal.
Now, two years later, his diagnosis has changed our lives for the better. Knowing is better than not knowing. We've been able to educate ourselves and others. Most importantly, we've connected with other families with the same diagnosis. We've laughed at our children. We've cried at each other's losses. We've shared information, ideas and stories. We've given each other hope. We've simply existed for each other-knowing the others makes it infinitely easier to have a child who is far rarer than one in a million.
For that, above all else, I am grateful we received our diagnosis.
We told my aunt his diagnosis because she was at the appointment occupying AJ for that incredibly long appointment (which really isn't all that long when you're trying to remember high school biology and process that your child has an incredibly rare diagnosis). But as we left, we determined we weren't telling anyone, including our parents, his diagnosis until the geneticist clarified the life expectancy not to exceed three years that we saw in the research papers. Somehow, they missed addressing piece despite Dave asking about long-term prognosis.
 |
| Teddy on diagnosis day, completely unfazed at rocking out world. |
We headed up north after that appointment, and I took a long walk with Teddy on my back, sobbing the entire time. The memories, fears, guilt, lost dreams and all that jumble of emotions comes back to me as I type this.
It took at least a month to start wrapping our arms around the diagnosis. We often said we had a name, but it didn't change much of anything. That wasn't completely true. Having this diagnosis dashed our dreams ... until we learned to accept our new normal.
Now, two years later, his diagnosis has changed our lives for the better. Knowing is better than not knowing. We've been able to educate ourselves and others. Most importantly, we've connected with other families with the same diagnosis. We've laughed at our children. We've cried at each other's losses. We've shared information, ideas and stories. We've given each other hope. We've simply existed for each other-knowing the others makes it infinitely easier to have a child who is far rarer than one in a million.
For that, above all else, I am grateful we received our diagnosis.
Sunday, November 12, 2017
Can't Catch a Break, But He Can Catch Croup
Teddy seems to have a perpetual snotty nose. It seems like he holds onto colds longer and just can't completely shake the snot. So we didn't think much of his snotty nose this past week until he didn't want to eat breakfast Thursday morning. He played with other children happily and seemed mostly his usual self at his neurology appointment (more on that another day - nothing alarming). When he didn't want to eat lunch, that's when I wondered if he had a fever. Sure enough, he was over 100 degrees.
That meant quick calls to the bus company and the school to let them know Teddy wouldn't be gracing them with his presence that afternoon. He perked up with Tylenol, and we dismissed it as the same bug AJ had the previous weekend. Teddy was back up and running the next morning with no fever.
Then on Saturday, he developed the characteristic barking cough and wheezy breathing of croup. Dave took him to the walk-in clinic, where he was diagnosed with croup but given no medication because it's a viral infection.
He napped both yesterday and today and slept fairly well last night despite the barking seal cough that punctuated his sleep. Dave slept next to him a good portion of the night and early morning hours, just to be sure all was well.
The last time he had croup, that I recall, was unseasonably late in the year in May 2015. I remember that distinctly because that bout of croup led to a middle of the night ER visit with me rushing him to the ER because of a seizure. Croup is bad enough because it's tough to hear your little one barking like a seal and wheezing for every breath like a smoker with lung disease. But for me, croup is scary because it was one of the illnesses that caused him to have seizures and has all those memories of the seizures and ER visit associated with it.
He's seemed less wheezy throughout today with only periodic coughs, but night is when croup worsens. I'm hoping tonight goes as smoothly as last night. I'm expecting him to stay home from school until he's past the worst of it to avoid sharing it with all his classmates (since he doesn't know how to cover his coughs ... and licks everything).
On the bright side, one of the things that makes it easier to breath with croup is cold air. Fortunately, in Wisconsin this time of year, we have plenty of that. So he was bundled up this morning before 7 a.m. for a bike ride to start the day with a bit easier breathing. That's a win-win for him!
That meant quick calls to the bus company and the school to let them know Teddy wouldn't be gracing them with his presence that afternoon. He perked up with Tylenol, and we dismissed it as the same bug AJ had the previous weekend. Teddy was back up and running the next morning with no fever.
Then on Saturday, he developed the characteristic barking cough and wheezy breathing of croup. Dave took him to the walk-in clinic, where he was diagnosed with croup but given no medication because it's a viral infection.
 |
| Hanging out at the doctor's office - great place for a Saturday. |
He napped both yesterday and today and slept fairly well last night despite the barking seal cough that punctuated his sleep. Dave slept next to him a good portion of the night and early morning hours, just to be sure all was well.
The last time he had croup, that I recall, was unseasonably late in the year in May 2015. I remember that distinctly because that bout of croup led to a middle of the night ER visit with me rushing him to the ER because of a seizure. Croup is bad enough because it's tough to hear your little one barking like a seal and wheezing for every breath like a smoker with lung disease. But for me, croup is scary because it was one of the illnesses that caused him to have seizures and has all those memories of the seizures and ER visit associated with it.
He's seemed less wheezy throughout today with only periodic coughs, but night is when croup worsens. I'm hoping tonight goes as smoothly as last night. I'm expecting him to stay home from school until he's past the worst of it to avoid sharing it with all his classmates (since he doesn't know how to cover his coughs ... and licks everything).
On the bright side, one of the things that makes it easier to breath with croup is cold air. Fortunately, in Wisconsin this time of year, we have plenty of that. So he was bundled up this morning before 7 a.m. for a bike ride to start the day with a bit easier breathing. That's a win-win for him!
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| Look! I can bike and breathe! |
Wednesday, November 8, 2017
Have Bike. Will Crash.
Teddy has been interested in bikes for a long time, including climbing on AJ's big boy bike with training wheels. He can pedal our tricycles for short spurts, but his feet fall off the pedals. We've had a pattern to adapt the foot pedals to better support his feet, but we never got around to actually making them. (My somewhat valid excuse is that we spend so much of our time Teddy proofing and supervising and repairing damage from Teddy that other projects get pushed to the backburner.)
So when I saw a room full of adapted bikes at Teddy's last appointment to get fitted for new braces, I inquired into how those are typically funded. I was surprised to learn that it is something that could be funded by Children's Long-Term Support Waiver (CLTSW). That's the county program that supports Teddy's additional needs above and beyond a typical child (with a parental cost share, of course). I e-mailed Teddy's case worker and received approval within 24 hours for the assessment for an adapted bicycle, which astounded me that it was that easy! (Apparently, it's not always that easy. The guy who did the adapted bike said that it's extremely rare for the process to move this quickly. When I spoke to Teddy's case worker yesterday, she said that she knew Teddy would benefit because Teddy and our family are so active.)
That means the highlight of today was picking up Teddy's new bike! This custom bicycle is designed for Teddy, so it fits him perfectly, yet will grow with him both as he develops more abilities and grows older.
It has a couple straps to help secure him in place to his backrest, which provides support for his core, so he doesn't have to work as hard to stay upright. The handlebar adjusts in height and gives him a wide, steady base for steering. Until he masters that concept (because he's a wild man now!), there's a guide bar in the front for someone to help Teddy when he needs assistance steering or is stuck and needs a boost. There's also a handle in the back for pushing, but the guide bar will be the main form of support until it's no longer needed. Then it can be removed.
The pedals have a series of 3 straps to secure his feet in place, so he doesn't have to keep adjusting them to stay on the pedals. Perhaps the neatest part is that whenever the bike moves, the pedals move. That helps ingrain the reciprocal motion of medal into his muscle memory. Wait, there's a brake, so I can keep him still when I get him strapped in. That might be the coolest part.
That's the technical side of why an adapted bike is so great for him, but all you really need to see is this:
So when I saw a room full of adapted bikes at Teddy's last appointment to get fitted for new braces, I inquired into how those are typically funded. I was surprised to learn that it is something that could be funded by Children's Long-Term Support Waiver (CLTSW). That's the county program that supports Teddy's additional needs above and beyond a typical child (with a parental cost share, of course). I e-mailed Teddy's case worker and received approval within 24 hours for the assessment for an adapted bicycle, which astounded me that it was that easy! (Apparently, it's not always that easy. The guy who did the adapted bike said that it's extremely rare for the process to move this quickly. When I spoke to Teddy's case worker yesterday, she said that she knew Teddy would benefit because Teddy and our family are so active.)
That means the highlight of today was picking up Teddy's new bike! This custom bicycle is designed for Teddy, so it fits him perfectly, yet will grow with him both as he develops more abilities and grows older.
 |
| He climbed right on and waited patiently for the adjustments. |
It has a couple straps to help secure him in place to his backrest, which provides support for his core, so he doesn't have to work as hard to stay upright. The handlebar adjusts in height and gives him a wide, steady base for steering. Until he masters that concept (because he's a wild man now!), there's a guide bar in the front for someone to help Teddy when he needs assistance steering or is stuck and needs a boost. There's also a handle in the back for pushing, but the guide bar will be the main form of support until it's no longer needed. Then it can be removed.
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| Nice wide handle for steering, not that he intends to actually steer any time soon. |
The pedals have a series of 3 straps to secure his feet in place, so he doesn't have to keep adjusting them to stay on the pedals. Perhaps the neatest part is that whenever the bike moves, the pedals move. That helps ingrain the reciprocal motion of medal into his muscle memory. Wait, there's a brake, so I can keep him still when I get him strapped in. That might be the coolest part.
 |
| Pure (blurry) joy at having his own bike! |
That's the technical side of why an adapted bike is so great for him, but all you really need to see is this:
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