Sunday, December 31, 2017

Beyond Blessed and Grateful

As promised in my previous post about Teddy's incredibly scary seizure episode, this post is about gratitude. Although I hope that each of you reading this never endures anything of a similar scope, I am incredibly grateful for the tremendous outpouring of love, prayers and support we received. Experiencing that much goodness allowed me to fall asleep the first night home by counting my blessings instead of my fears.

First, I have no doubt that God watched over Teddy throughout this entire experience. Due to Dave being ill, he was home from work and able to attend the Christmas program, which wasn't originally the plan. My mom was over visiting to help the next few days, so she was instantly there to help keep AJ's life normal while we were gone. The huge snowstorm that was supposed to hit never materialized (although that could just be a result of me not working in Green Bay because I was in the ICU ... it always snows when I drive to Green Bay this winter).  We had the most incredible nurses, doctors and medical staff working on Teddy both in Oshkosh and Milwaukee.

God certainly heard the prayers of all our family, friends and their family and friends who were praying for our family, even before the prayers were sent His way. At the ER, I posted to our PIGN group, where each family has a child or children with Teddy's diagnosis. Unfortunately, they relate all too well to how quickly a seizure or illness can change everything. That meant that within minutes we had prayers from across the country and literally around the world. We had an offer that Chicago wasn't that far from Milwaukee if we needed anything. We had people in New York and Florida offering to order food for us or whatever we needed. Had we asked or given them the information to do so, it would have been there without a doubt.

We had offers from at least 5 different people to take AJ while we were in Milwaukee, some expected from dear friends, others from co-workers and one quite surprising yet sincere offer from one of Teddy's therapists (who had met AJ one time). Thankfully my mom had that under control, but it was reassuring to know that we had so many people willing to include AJ into their families.

Both Dave and I are blessed to work for employers, and bosses, who are extremely understanding. It's so nice to be able to focus on what matters most instead of worrying about missing work. Both our bosses offered to assist however they could, even bringing things down to Milwaukee if we needed. 

Dozens of people sent their well wishes via texts and Facebook, along with prayers and positive thoughts. Many offered to help (multiple times) with anything we needed. We had folks we hadn't seen in years who live in the Milwaukee area offer their assistance.

The one thing I discovered, though, in the process is that it's really hard to ask for help even when you want it. The only person we asked, aside from my mom caring for AJ, was for my aunt who lives in Milwaukee to pick up some necessities we had forgotten. (Necessities at that point included Tylenol and leggings for me, pacifiers for Teddy and decent coffee for Dave's folks. Standard necessities for nursing the stomach bug and a sleepless night in the hospital.) Not only did my aunt oblige our requests, but she also brought donuts and other snacks for us, along with a singing Christmas toy to entertain Teddy. (Teddy was so miserable the toy did nothing for him until we got home, but he does indeed like it now that he feels like himself.) She also came back for a second visit later in the day, bringing Dave's favorite sandwich for dinner.

I had someone offer to bring us a pan of lasagna the Saturday we got home. I almost said yes because lasagna sounded really good to me but said no because we really didn't need it. It seemed selfish to have that person make lasagna, especially heading into a holiday weekend. However, when Teddy's teacher asked to stop by after school on Friday with his artwork and Christmas present for us, she surprised us with a card from his team that included a generous gift card to a local restaurant. She explained that they wanted to do something and figured we didn't need to worry about cooking a meal after the events of the past few days. I greatly appreciate the gesture and the lesson that I need to take away to simply do rather than ask or say to let me know how I can help. It's incredibly hard to ask for help and much easier to accept it when it's simply given to you.

The boys love that the card sings. I love the thoughtfulness.
A few acts of kindness surprised us in the mail. The boys both received cards and pictures from their cousins—a sweet gesture to let them know they were in their thoughts. Teddy also received a card that was quite unexpected from one of his bus drivers. I'm assuming his teacher told the bus drivers why Teddy wasn't on the bus, and she mailed a card to him letting him know she's praying for him.

This was completely unexpected kindness.

When we went to Dave's family Christmas gathering the weekend we returned home from the hospital, we had several people comment that all they needed for Christmas was to see Teddy smiling and being his usual self. If there was ever a doubt of how many family members were praying for Teddynot that there wasit would have been removed by hearing from Dave's family. (His mom is one of 13 children, so there's a whole lot of people at that party checking on Teddy.)

It's a combination of expected support from dear friends and family, who've been with us through the initial seizures, to the prayers and love from our PIGN group to the overwhelming support from co-workers, our employers and everyone who knows Teddy.

To everyone who supported us, thank you. What you may have viewed as simple posts on Facebook, texts you sent without worrying what you were typing or another ordinary prayer made us feel so loved and supported through those trying days. I couldn't have imagined the outpouring of support we received, but I am oh so grateful for it.

Thursday, December 28, 2017

The Nightmare Before Christmas

This has nothing to do with the holiday show and everything to do with our real life in the days preceding Christmas. It's been a week since we were discharged from the hospital. Since Teddy is back to his smiling, happy, mischievous self, now I can share the lengthy details with the many people who were praying and keeping Teddy in their thoughts.

Teddy had Christmas at the Barn at  his horse therapy place in Green Bay December 19, so we headed up as a family to enjoy rides for the boys, cookies and a quick visit with Santa. Dave was home recovering from the stomach bug but feeling well enough to go that afternoon, and my mom was in town to watch the boys the next few days while I had work and medical appointments. We watched both boys ride their horses, with Teddy grinning the entire time to ride Maverick with a police officer as an escort nonetheless. (The local police department partners with this barn for their equestrian patrol, so the officers were volunteering to walk alongside riders.) Teddy even smiled and stood next to Santa, which was nothing short of a Christmas miracle as we joked.
Teddy smiling with Santa ... a bad omen apparently.

On our hour-drive back home, I noticed something odd with Teddy's breathing and turned around to look at him. As I turned, my mom, who was in the backseat with the boys, thought I was checking to see if Teddy was sleeping and said, "He's awake." As soon as I saw Teddy, my response was, "He's seizing." (OK, that's slightly edited to remove whatever expletive came out with that statement."

After 2.5 years without a seizure and one day fully weaned off Keppra, his anti-seizure medication, Teddy was seizing. Dave and I both had often said that the next seizure would suck because it had been so long, but we had no idea how much the next 48 hours would suck.

Teddy's past seizures all were less than 2 minutes, although they often felt much longer. After probably a minute of seizure activity, I gave my mom and AJ the task of counting slowly to give us an approximate seizure length. Dave exited the highway as soon as he could, and I stripped Teddy out of his coat with him still seizing since every other seizure was accompanied by a fever. My dumb idea was to take him inside the store nearby, so I could have light to see whether his lips stayed pink or started turning colors and to better monitor him instead of using the dim lights of the vehicle and cell phone flashlights. Dave suggested I hop in the backseat while we keep driving toward the local ER, which was still a good 25 minutes away.  At some point, while Dave was on the phone with the neurologist's office, the seizure finally stopped after at least three minutes. And then, while he was still on the phone, Teddy started seizing again.

The drive from Little Chute to Oshkosh consisted the following:
  • My mom and AJ counting until I realized it was pointless because the seizures weren't stopping.
  • AJ questioning Dave as to whether he was driving too fast.
  • AJ saying, "I don't want Teddy to die."
  • Me holding Teddy's hand encouraging him to come back and telling him we were right there.
  • Me cursing under my breath and telling Teddy to breath because there were times I wasn't sure that he was.
  • Talking to the on-call neurologist who told us to go the the ER in Green Bay (thinking we were still there).
  • Me telling Dave to find the nearest ER and then determining that Teddy was still breathing that we could continue to the one in Oshkosh.
  • Applying ice packs to Teddy and gathering what was needed in his diaper bag.
  • Having AJ sing songs to make Teddy happy (and get him to stop saying he didn't want Teddy to die). 
  • Wiping phlegm-filled drool from Teddy's mouth that just didn't stop. It was almost as if I could pull the phlegm from his mouth. 
At the ER, I tumbled out of the vehicle with the diaper bag on my back and Teddy limply in my arms. We checked in, after waiting for the person in front of us to finish, and I tried to sit Teddy in a chair to see how he was. He couldn't sit up because he was still seizing, and a nurse was up to get us within a minute.

The next couple hours are both a blur and moments that are forever etched into my memory. Dave was in and out of the room because he dropped my mom and AJ off at home and then made three trips back to our house to first pack an overnight bag and then go back for things we had forgotten. Dave's folks showed up in the ER, having made the drive down from Green Bay.

At the ER, they gave Teddy lorazepam to stop the seizures because he was at roughly 30 minutes of seizure activity. Teddy went from being unresponsive in a seizure to unresponsive but hopefully not seizing. The ER team wasn't certain whether the seizures had stopped or whether the lorazepam was masking the signs of the seizures, so they administered both Keppra, his usual anti-seizure medication that he had just stopped taking, and another more potent anti-seizure medication. Somewhere early on in the process, the seizures or the anti-seizure medications or some combination created issues with Teddy's breathing. He was breathing independently, but he wasn't exhaling enough CO2. Teddy was suctioned multiple times to pull the phlegm and junk from his mouth and airways. The team attempted bagging him for about 15 minutes, along with a nasal oxygen line and an oxygen mask in different combinations. None of that was sustaining the numbers where they needed to be, so the team intubated Teddy, which required another dose of lorazepam he still had enough response within his body to naturally fight a tube being crammed down his throat.

Never again do I want to see this sight.

It wasn't quite like an episode of House where the team cuts a hole in Teddy's neck, so he can breath, but it was as close to an episode of House as I've ever been. I counted 6 people actively working on Teddy at one point, with a few more on the edges of the room. Teddy was transferred to a larger room in the ER to fit all the people and equipment. Teddy continued to suctioned, even after he was intubated, which required multiple people to pull him from the ventilator, suction him quickly and hook him back up to the machine that was breathing for and with him. He had a respiratory therapist (I learned a new occupation that night) by his side the entire time, along with an absolutely fantastic nurse named Chris. Chris interacted with Teddy as though he were awake and responding, apologizing for all the invasive procedures like the catheter to do a urine sample and the IV that he nailed on the first attempt. (I suppose an unresponsive, limp person is easier than a wriggling child.)

This is some of the chaos from the procedures done on Teddy. No time to be neat.
At some point in there, the tears came for me along with the non-stop prayers. We were told we'd be transported to the ICU in Milwaukee, more than an hour away, which clarified the significance of events (not that having a machine breath for your child isn't pretty clear on its own). I got my own box of Kleenex to wipe away the snot. I moved from beside Teddy's bed to sitting on the foot of his bed, holding his hands and rubbing his legs, to be out of the way of the medical team but near him. I rode on his bed as he was wheeled to his new room and then again to have a CT scan done. I remember his nurse Chris donning the lead gown to continue breathing for Teddy while the CT scan was done. (Seriously, that man was the best nurse Teddy could have had.) When Dave was there, I headed to the bathroom to sob for a few moments, splash some water on my face and put on my game face with an attempt at no more tears. I had hugs from at least two different nurses, assuring me that we did the right things and Teddy was where he needed to be.

I remember saying to Dave, "This isn't supposed to happen to Teddy." It may sound horrible, but other children with this syndrome have seizures on a regular basis. They're the ones in my prayers as these horrid seizures happen that require immediate medical intervention. It wasn't supposed to be my child that needed my prayers and those of everyone else.

After around 3 hours at the ER, the transport team from Children's Hospital in Milwaukee arrived. The team consisted of an ambulance driver, respiratory therapist and RN with a full arsenal of medications and equipment. It took at least 30 minutes for the teams to coordinate Teddy's care, which was fascinating to watch. I admired the grace and helpfulness of the local team who had responded during crisis to make sure the expert pediatric team had everything needed to transport Teddy, who was now fairly stable.

There's a lot of stuff in that backpack ... and on that gurney.

I rode in the front of the ambulance, staring out the windows at the night sky and building lights. I chatted with the driver to keep my mind occupied and trusted that Teddy was essentially sedated with the additional dose of lorazepam given to him for the ride. No lights and sirens, no speeding. Just a routine trip for that team but not for us. Dave followed with his folks in a separate car, and they arrived in Teddy's room within 10 minutes of us getting into the room. The transport team updated the team at the Pediatric Intensive Care Unit (PICU). Different nurses, respiratory therapists and doctors took over from the transport team. The on-call neurologist talked with us in the hall around 11:30 p.m. He asked about previous seizure history, and I replied that Teddy was predisposed to seizures due to his rare genetic disorder. He asked which disorder, to which I replied, "Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1." He looked at me for a moment and said that it must be rare. Yeah, I don't blame him for not having any clue what I was saying. No one expects that mouthful after being called in at that time of the night. I had to repeat his diagnosis twice, slowly the second time, so the resident could write the entire thing down.

This monitor near Teddy's door displayed all his information.
Between talking to the neurologist and the resident and watching the team get Teddy set up, I felt like absolute crap. I wasn't sure if it was the stress, lack of sleep or the stomach bug that Dave had previously, but I curled up in a ball on the crappy pull-out couch and felt even more miserable for not being at Teddy's side. The rest of the night is truly a blur with snippets of Teddy covered in vomit with an upset nurse insisting that the tube needed to be removed then, not later when Teddy was more alert, because he wouldn't stop gagging on it and vomiting. She's my hero, although I couldn't fully appreciate her then because I was also vomiting thanks to the damn stomach bug. When the care team offered to have me climb in bed with Teddy, I immediately passed the job to Dave because I knew I'd be diving for the toilet. In between rounds of puking and fitfully sleeping, I saw nurses in and out of Teddy's room. I heard Dave struggle with the question of, "What's the most important thing to you?" I saw Dave's folks in the uncomfortable recliner and even-more-uncomfortable chair. I saw Dave always at Teddy's side. I texted updates to my family and posted updates for our PIGN group on Facebook in those few moments after each round of puking where you feel better momentarily.

I never thought we'd end up here.

As the sun rose Wednesday morning, I felt hopeful that the worse was past. Yet Teddy remained lethargic, uncomfortable and just miserable. My aunt who lives in Milwaukee arrived that morning like a ray of sunshine with good coffee for Dave's folks, comfy leggings and Tylenol for me, pacifiers and a singing toy for Teddy and OJ for Dave and donuts and snacks for everyone. Even her presence couldn't get Teddy to smile. At rounds the team agreed to remove all his monitors (despite the shock of his nurse) in an attempt to make him more comfortable and less miserable. That gave Teddy a bit more mobility, but he couldn't do anything with that mobility. He was a complete rag doll, unable to even support himself sitting up for a moment. He began vomiting, either due to the anti-seizure medications he was given or the stomach flu.

A picture is worth a thousand words.

Teddy  had visitors because he happened to be there when the local professional basketball team, the Milwaukee Bucks, were doing their annual holiday visit. Teddy got a stuffed animal from two players, including one guy who was 2 feet taller than me, but he could have cared less because of how miserable he was. The two-hour nap he took did wonders for me because that two hours of sleep helped me to feel more like a human than a zombie. Dave and I alternated turns of getting puked on to the point that our nurse started a load of laundry for us to get us clean clothes and Teddy's favorite blanket cleaned for the night. My aunt returned later that afternoon and finally coaxed a smile out of Teddy around 5 p.m. That was the start of the return of Teddy.

Best dad ever. Teddy liked to push the TV buttons with his feet.

It seemed that initially the doctors were ready to discharge Teddy, but we advocated that he stay until he could hold down liquids and ideally solid food. That meant we were spending another night. Dave's folks left with our blessing and encouragement, and my aunt ran to get Dave his favorite sandwich from Portillos because his appetite was finally returning from the stomach flu. My cousin and her fiance stopped by for the final minutes of visiting hours, and we settled in for what we expected to be a long night of Teddy fighting sleep and all the monitors.

In one of the most advanced pediatric hospitals, this giant yellow flashlight is what they use rather than a penlight.

The night went better than we expected with Dave and I alternating shifts with Teddy. The advantage of sleeping with Teddy is that he was warm and his bed was more comfortable than the pull-out couch. The disadvantage was that it meant your arm fell asleep. I shamelessly stole Teddy's new fleece blanket when I was on the couch because he certainly didn't need it. Around 5:30 a.m. Teddy decided he didn't need to be monitored anymore, so he began the endless cycle of pulling off every monitor attached to him until they removed them for the day around 7 a.m. We knew we'd likely get discharged that day, but we had to entertain Teddy until rounds happened around noon. We got him some breakfast, and he held down yogurt, oranges and some Cheerios. He continued drinking apple juice, building on the 4 oz. he had drank overnight.

Plotting his freedom.

We got a wagon brought to the room and wandered the halls. We had tried walking the halls, but Teddy was still far too unsteady for that. His nurse from the previous day asked if he was back to his drunk monkey self, which we had told her about as his usual walking. Dave's reply was perfect, "No, he's more like a drunk monkey on St. Patty's Day." That got a chuckle from all the nurses.

I like this goal better than making Teddy comfortable.

With Teddy back to flirting with the nurses and smiling at them, things were looking far better. We were getting discharged with an emergency rescue medicine to stop seizures, so we watched a tutorial on how to administer that. Child Life came to drop off goodies for Teddy and took him for a short wagon ride while we finished the video. Around 1 p.m. Thursday, less than 48 hours after the chaos began, we were discharged. Teddy downed his smoothie before we left the hospital and his cup of water before we got out of the parking ramp. He mowed down on pretzels and fruit snacks like nothing ever happened, then snuggled up with his pacifer and dozed to sleep.

The wagon ride to freedom. Sad to see so many rooms decorated for the holidays.

It took the rest of Thursday for him to slowly improve his coordination, whether due to the seizures themselves or the medicines to stop and prevent them. He was extra sleepy and pretty crabby until another nap and then a fun visit from his friends and my dear friend. That visit was exactly what we needed with some Christmas presents as entertainment and children to play with and a bit of the perfect reality.

A happy, hungry boy leaving the hospital.

The question the neurologist had asked us when we were making the decision to wean Teddy off his Keppra was, "Are you feeling brave today?" We said not particularly but still felt it was the right decision. At the ER we both looked at each other and said that we weren't feeling so brave anymore. (I just reread that post from November and snorted. A couple times.)

I know this post is incredibly long, but it's a bit therapeutic for me. This 48-hour period was easily the worst of my life. When I returned to the ER today with Teddy to drop off thank you notes for the entire team and his nurse in particular, along with candy, the receptionist remembered us. I said her face looked familiar, but parts of that night were a blur. Her response floored me, "That was a very scary night for all of us." I knew it was a terrifying ordeal for us, but that statement makes me think that things were even worse than I had known from my non-medical perspective.

I'm beyond grateful for all the support, prayers and love for our family. That, my friends, will be the next post on another day.

Sunday, December 17, 2017

20 (million) Questions

I played a different version of 20 questions this past week, spending 2 hours on the phone with a very nice lady from the National Institutes of Health (NIH) in preparation for Teddy's visit in January. I'm quite glad I filled out all of the details of my pregnancy and much of Teddy's baby book. The conversation itself was pleasant, filled with occasional laughs as I felt the need to explain gaining 45 pounds during my pregnancy with Teddy. (I ate a lot of ice cream.)

But, despite the pleasantness of the person on the other end of the line, the conversation still had those moments. Like when she asked me when Teddy started to run, and I explained that he definitely covers ground quickly but not in the motions of running. She then asked, "Would he describe it as running?"

My honest reply is that he wouldn't describe it as anything because he is non-verbal. Those are the moments that sting, the questions that are answered by what your child cannot do rather than the amazing milestones he's accomplished.

Fortunately, much of our conversation was on milestones and progress, in addition to all the medical history details. All this narrative is combined with Teddy's medical records is designed to prepare the team at NIH for Teddy's participation in their natural histories protocol study.

This study looks at just about any aspect of medical testing you can imagine from MRI to EEG to sleep study to spinal tap (eek!). That last one is the one we're most nervous about, although we're not overly excited at having Teddy sedated twice in a week. (Well, let's be real. Some days we wish we could sedate him. At least at bedtime at my folks' house.) He'll meet with developmental specialists, a gastroenterologist, a neurologist, ophthalmologist, audiologist, geneticist and a few more -ists that I'm missing off the top of my head. It is literally a week of appointments and tests, starting first thing Monday morning and finishing Friday afternoon.

We're hoping to get a better understanding of Teddy and how his body works from his issues sleeping to his incredibly high pain tolerance. There's so little known about his specific diagnosis that this is a unique opportunity to get all these expert opinions to build upon the knowledge of our team here (none of whom have seen any type of CDG most likely).

It also builds the database of knowledge regarding CDG and MCAHSS1 specifically. One other family with Teddy's diagnosis has completed the study and found it to be useful. We view this as an opportunity to help other families with this diagnosis have access to better information in the future.

It's been a long process to scheduled for the study (seriously, 23 months from the time I first inquired to the time we'll actually be there for the study). But, I'm excited that we're scheduled and crossing my fingers that Teddy gets and stays healthy enough to participate in the study (since illnesses tend to cause some issues with either the lodging accommodations and/or tests). If I were to actually think about the ordeal of flying with Teddy, driving through D.C. and all the tests, I'd be full of anxiety. So, instead, I'll continue with my usual technique of blocking all that until right before we leave. That works well for me most of the time.

Tuesday, December 12, 2017

Teddy Sat on Santa's Lap ...

... for 5 whole seconds!

Santa with the boys, as Teddy was making his exit.
Teddy is fascinated by costumed characters but only wants to encounter them on his terms. That means that when he was younger and lacked any other means of communication, he screamed bloody murder. As he got older and more mobile, he simple scooted away from the Easter Bunny while giving it the death stare. We had good success with Clifford the other year, which was fun.

Now he's to the point that he can simply walk away from characters he doesn't like, which he does. But then he'll stop a safe distance away, smile and stare at them. Basically, they're cool, but they're too creepy to be that close.

So we didn't expect Teddy to remain by Santa for long, if at all. I expected him to bolt immediately when Santa scooped Teddy up and placed Teddy on his knee. Instead, Teddy looked quizzically, puzzled I think by Santa's real beard. And then, after a few moments, he scooted off Santa's lap. He was willing to stay right there with me by his side, which was also progress.

I think it's partially because this Santa is rather much like a real person, much more realistic than most Santa costumes. Yet, it's the same Santa we've seen in past years, so there's definite acceptance on Teddy's part.

He had a great time tonight checking out the Christmas lights and the sleighs with AJ, in addition to meeting Santa. AJ said he didn't want to talk to Santa, and my reply was perhaps not the best, although it was effective: You have to. You're the only kid who can tell Santa what you guys want.

Think Teddy liked the sleigh much?

AJ came through like a champ, listing off the three things he wanted to Santa and then suggesting two ideas for Teddy, like the awesome big brother he is. Santa commented on how organized he was, which, I mean, what parent doesn't beam with pride at that?

Monday, December 11, 2017

Acceptance Comes with Time

While the adage that time heals all wounds may not be perfectly true, time helps tremendously in terms of acceptance of your child's diagnosis and needs.

I remember the first time that Teddy needed a piece of adapted equipment: his orthotic braces to help stabilize his ankles. I shed a few tears after the therapist left the house for the fitting. There was something about a physical object, a piece of adaptive equipment, that I couldn't deny my son needed. Teddy needing adaptive equipment, first in the form of ankle braces and then in the form of a gait trainer, was a hard pill to swallow despite the fact that I knew he benefited greatly from them.

Now, a couple years later, Teddy has been approved for three pieces of adaptive equipment in the past few months (five if you count his most recent braces and SPIOs (think Spanx for toddlers to help stabilize his core)). I couldn't be more excited about Teddy getting his own adapted bike, and neither could he. Today I got the response from his case worker that he would be eligible for an adapted booster seat to help at meal times since a traditional booster seat really isn't functional for him.
Instead of feeling depressed that he needs yet another support, I'm excited about the possibilities of meals going smoother with the right equipment. And, quite honestly, I'm amazed at how easy the process was with his county funding. I might have told his case worker that she's like Santa Claus. (Hey, I give her my wish list, and she makes it happen.)

Special Tomato Soft-Touch Liners
This is the booster seat we're hoping to order for Teddy.
This isn't to say that there aren't new challenges that occur that require additional time to process or that things like birthdays and holidays are tough at times because of milestones not reached. (Shopping for presents really emphasizes that fact.) But these last pieces of adapted equipment I've been able to view as assets that benefit Teddy with no strings attached, which is so nice.

And that third piece I mentioned? That's another post for another day. But it's exciting.

Thursday, December 7, 2017

Insights from AJ

Every now and then, AJ will say something that makes me realize how much he understands about disabilities and the lens through which he sees them.

One of the first times this happened was on our vacation this summer as we watching a boy who likely has a diagnosis on the autism spectrum interact with his family. After they passed us, AJ turned and asked me, "Do you think he has special needs?"

I was surprised he knew the phrase "special needs," although I'm not sure why. He's extremely observant and has reasoning skills far beyond his age. We had a good conversation about how everyone has different needs. I said that although it appeared that child had some unique needs, he was enjoying a vacation with his family just like our family was.

AJ loves (and hugs) Teddy fiercely.

Then, the other week, we were discussing Teddy's speech therapist being pregnant. AJ asked, "Do you think her baby will have a diagnosis?" After considering his question for a moment, I told him that most people aren't born with special diagnoses. (In hindsight, there's probably better answers, but seriously, this question came at 6 a.m. before school and work.)

Within the past week, AJ referred to Teddy as the Secret Keeper. He told Teddy the middle name of one of his friends since Teddy wouldn't tell us. It was awfully cute to watch him whisper in Teddy's ear, and he has a point, Teddy is a really good Secret Keeper. In fact, he even helped me assemble Dave's St. Nick present ... if you count whacking me with the bars I was trying to assemble help. But he didn't tell Dave what he was getting.

I'm sure more moments like these will occur as AJ's understanding of Teddy's disorder and disabilities in general increases. The awareness that he has, though, and understanding and acceptance put him leaps and bounds above so many other children ... and adults to be quite honest.

Monday, December 4, 2017

Parent Teacher Conference

We finally had Teddy's parent teacher conference this evening. His teacher recognized that we didn't have the opportunity to meet his whole team at the Play to Learn Night back in October, so we scheduled conference. This was actually the second attempt at this conference due to a communication issue the first time around that left us rather frustrated.

I'm grateful we had the opportunity to sit down to discuss how Teddy is doing. This was our first time really meeting his PT (aside from a quick introduction in a parking lot) or meeting his OT. His OT and PT most often tag-team therapy with Teddy because it's most productive for all of them to work together. It allows his PT to focus on proper body positioning while his OT engages him in fine motor activities to keep him involved in the activity as long as possible. His OT said that Teddy went from spending seconds on a task at the beginning of school to now working for 7 to 8 minutes.

His OT shared the insight that Teddy does best with vertical positioning for activities, such as an easel, whiteboard or simply angling a puzzle more upright. She said she notices better attention and more success in completing tasks. This wasn't something we'd ever considered, but we're already discussing placing a whiteboard in our basement playroom.

It was interesting to hear that Teddy's help with vacuuming is actually really great therapy for him because it requires a number of muscle groups and motor skills. Apparently we should vacuum more often. If only someone would crumble food, particularly frozen pancakes, all around our house to give us a good reason to vacuum. Oh, wait ...

His team was excited to see his bike, and we're excited for him to have that at school to use. I'm not so secretly hoping they can teach him how to steer, although his PT called the guide bar in front of his bike a jousting stick. She apparently knows Teddy quite well already. She's going to send us some ideas of adapted seating for meals to hopefully allow Teddy to feel like a big kid at the table while still supporting and quite honestly containing him to help him focus on eating. That would be extremely helpful since the booster seat is really not that functional for him anymore.

Perhaps the most exciting piece of the conference was discussing an iPad with Proloquo 2 Go for Teddy. Proloquo 2 Go is an incredibly flexible and comprehensive speech app that would give Teddy more ability to communicate. It also is incredibly user friendly and easy for us to adapt and change to various situations rather than our current method of taking a photograph, laminating it, adding velcro and using it in his book. There will be a learning curve, but our hope is that by starting this now that Teddy will have much more success communicating with it a few years down the road.

We used this meeting to bring up our concerns that Teddy arrives to school an average of 5 minutes late nearly every day. This is extremely frustrating to us because the only consistent time that Teddy integrates is during outside play, which is the first 15-20 minutes of the day. That means he's missing 1/4 to 1/3 of his integration opportunity each day. So, his teacher is going to ask the principal of Early Learning to reach out to the bus company. Just to be certain it's addressed, I e-mailed the principal after our meeting as well to express our concerns and attempts to resolve this with the bus company.

The integration piece is important to us because we want Teddy to have the opportunity to make friends and be an active part of his school. It sounds like other children are excited to see him during outside play and want to play with him, which is great. It's tough because of the needs of all the children in Teddy's class, there's not someone with him 1:1 to help him integrate in the traditional class on a regular basis. His teacher is working on developing Teddy's ability to focus and play well with a few toys that can be taken next door for him to use to have meaningful interaction. That sounds great ... now I want to make sure it happens. Today was the first day I remember getting the note that Teddy "wasn't ready to integrate today and will try again tomorrow." Today was probably also the first day that there was no outdoor recess due to weather.

But, to end with a positive note on interacting with others, his OT mentioned there's another boy who mentions Teddy every time she works with him. She said he adores Teddy and says they ride the bus together. I knew instantly that she was talking about Max. Now, if only Teddy had the opportunity to build that type of relationship with more kids ... without sitting on them or taking their toys.

Saturday, December 2, 2017

Thanksgiving Eve

What? You've never heard of Thanksgiving Eve?

It's a thing in our family, as is evidenced by this post from last year and this post. It's taken me a week or so to get past Thanksgiving, so I could write about this with better perspective.

Since Dave hunts, Thanksgiving consists of me heading to my folks' house with the boys. We used to spend several days there, but it's shortened to just a day or so because the boys are now in school. And it works out to be some sort of stressful event every year.

There was the year that we showed up with a stomach bug and left every single person, which was quite a few given all the company there for deer hunting season, vomiting and miserable. Oops. (In my defense, I did call ahead and ask if they preferred if we stayed away with our sickness.) Then there was the year that Teddy went to bed at 3 a.m. That was a rough year. Last year is chronicled in the link above, but it consists of waking up at roughly 3 a.m.

This year we determined we'd skip school Wednesday, leave bright and early when the boys woke up and spend all day Wednesday at the farm. We'd spend the night and head to my in-laws' house Thursday afternoon.

Well, AJ woke up at 3 a.m. screaming because his ear hurt, which resulted in two things. One, I was up from 3 a.m. Two, we spent until 11 a.m. at the doctor's office and pharmacy to get medication for his ear infection. Bright and early departure ... yeah, right.

The trip over was uneventful, thankfully, and the boys enjoyed their afternoons. I was absolutely shocked at the effort and success my mom had with Teddy-proofing one of the guest rooms. She stripped the room down to two single beds with two crates of books. Considering the room was a bunk bed-style bedroom with a desk that served as her office, I was in awe that she condensed the office into the closet and had removed everything from that room. It truly is a testament to how much she loves Teddy and me to make every effort to help Teddy sleep better at her house.

Unfortunately, her efforts seemed to go unnoticed by Teddy at bedtime. He was bound and determined to leave the room, so we struggled with bed from 7:30 to 10 p.m. In hindsight, it would almost be laughable how stressed I was. At the time, I was beyond frustrated with my inability to get Teddy to settle down and sleep. It didn't help that I had been up since 3 a.m., but I know I would have lost my patience regardless.

Teddy eventually settled to sleep around 10 a.m. and stayed asleep until 6 a.m. when he was ready to conquer the day. I was quite glad, once again, to head to the Turkey Trot to run 5 miles to wash away the last of the stress from the evening prior.

I realized, though, as I drove home with the boys what a terrific example of unconditional love my parents set for me. Despite me losing my patience and ending up in tears that evening, both my mom and my dad did their best to help. As challenging as that evening was, it served as a strong reminder of unconditional love and set the example for me to strive to follow with Teddy ... even when he won't sleep.

Thursday, November 30, 2017

Teddy's New Friend

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.

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.

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.

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.)

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.

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.
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.

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!

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.

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.

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:

Tuesday, October 31, 2017

Treats Instead of Tricks

Happy Halloween! This has been the happiest Halloween I've had in the past several years. We started our morning with a Spooktacular Show presented by AJ and all his kindergarten peers. Their performances were just a joy to watch, particularly the expressions on AJ's faces throughout the songs. That kid has a personality all of his own. One of the nicest things about the program was that Teddy enjoyed it. He hung out contentedly in his Kimba Kruze the entire time, not attempting to escape or wander or express any concerns. I think he enjoyed all the music and costumes, and it was so nice to be able to watch and enjoy the entire performance without needing to occupy Teddy.

Dorothy and her tornado.

Teddy and I displayed our costumes at speech therapy, with me accompanying him as Dorothy. He was a tornado since he is a destructive force of nature. His costume held up the entire day without him destroying it, so perhaps I used the right amount of hot glue. His speech therapist loved his costume and completely understands why he was a tornado.

If you look closely, you should see a house in the tornado.

I also had the opportunity to help clean up at AJ's classroom party in the afternoon, which pretty much consisted of opening a few snacks and being in the picture when AJ's teacher took photos of each table of students. He asked, "Can my mom be in the picture?" So as all the other parents intentionally backed out of the way to avoid being in the pictures, I had to jump right in, minion costume and all. (I had switched costumes for the afternoon since Dorothy with no tornado wasn't as cool as being a minion.

The tornado is on the move! No stopping him!
The day ended with trick-or-treating with both boys. This year is noteworthy as the first year that Teddy walked to houses trick-or-treating. Although he was walking last year, he didn't have anywhere near the endurance or ability to navigate trick-or-treating. He did need to be carried for a bit this year, but he did awesome walking. Teddy thought it was really cool that we got to go up to everyone's houses, but he couldn't understand why we left so quickly without going inside at each house. He'd stand on the step staring at each person who went back inside instead of realizing we're supposed to move along to the next house. Guys, they opened the door to their house! We should go inside. It's rude to just leave like this!

LEGO Nexo Knight Clay (AJ) and Teddy the Tornado trick-or-treating.

It was a fantastic Halloween, with our boys thoroughly spoiled by our neighbors with special bags loaded with treats for them and happy family memories. And trick-or-treating is much more enjoyable when you have full stomachs versus hangry adults. (Lesson learned last year.)

Tuesday, October 24, 2017

Family Play to Learn Night

This post is tough to write, quite simply, because tonight was tough. I think the reason why is because expectations did not match reality.

Teddy's school had a Family Play to Learn Night that was billed as an opportunity to come explore his classroom with him with the opportunity to have a 20-minute slot to meet individually with his teacher. I had assumed it was open to everyone to come play and explore and then have some focused time to hear specifically about what Teddy does in the classroom.

So we arrived about 30 minutes before our scheduled time. The classroom was empty except for his teacher when we arrived, and she welcomed us. She said she could meet with us right away and that we didn't need to wait, which was nice because Teddy doesn't wait well.

When her opening statements were that the classroom was completely rearranged because of Teddy, that's when I realized this wasn't a night of family play. It was really his fall conference, without any of his therapists (who had attended all his conferences last year).

His teacher was pleasant and positive, emphasizing some of the progress that Teddy has made and adaptations that have helped him, but the message was still there that Teddy was the reason the room was rearranged, Teddy has a constant adult presence (which is largely the reason a second aide was added to the classroom) and that Teddy has been integrated into the traditional 4k classroom on limited occasions (instead of daily like some of his more advanced peers). Tack on the fact that Teddy typically arrives 5-10 minutes late because the bus is consistently late, which she said was not that big of deal because it was outside play time.

Honestly, him missing outside play time, which is his favorite thing, is a problem to me. It's even more of a problem to me because she said that recess is how the students in the traditional 4k class know Teddy ... if that's his only form of daily integration, why does he have to be shortchanged because the bus can't get him there on time every day?

His teacher said that even though it's only October that she's thinking ahead to next year. She approached the question of whether we were open to Teddy going to a different school that his home school (in a really tactful manner). I acknowledged that our hope is that both boys attend the same school, which is why we were trying to figure that out last spring already and were essentially told we'd look at kindergarten placement after 4k not all at once. At that same time, we were also told that students with needs similar to Teddy's have been successful at his home school.

Ugh, it just wasn't what I was expecting. I expected AJ and Teddy to get to play together and have some conversation about what his days looked like to hear his routines. Instead we got nearly an hour (and I truly appreciate that amount of time, I do) of the challenges and some of the possible solutions they're working to implement. I got the names of Teddy's OT and PT (for the first time!) and his aides. He's made progress, and there's definitely a desire to help Teddy succeed.  There was really a lot of good, but I wasn't mentally prepared for it and had tears running down my face as soon as we exited the school.

I think had I realized this was his conference for his progress report that we'll get in a few weeks, that I would have mentally approached it differently. I don't know what else to say other than my favorite verse, Romans 12:12.

Let your hope keep you joyful, be patient in your troubles and pray at all times.

Thursday, October 19, 2017

Teddy's First School Nurse Visit of the Year

I'm sure this won't be the only visit to the school nurse for him, but I hope it's the only one that I cause. Wait, that sounds wrong. I didn't cause Teddy's injury, but I did send him to school with a huge bump and fresh blood.

Around 11, as I was opening the fridge to get Teddy lunch, he fell onto the metal track of the sliding glass door. I'm not sure what specifically caused him to fall because ... again ... I was opening the fridge. He started crying, so I scooped him up, took a quick peak at his noggin and took him onto the deck to let his crying scare the geese out of our yard. (I don't like them pooping everywhere.) Being outside worked it's magic right away on Teddy, so he was over his injury within a minute or two and I still had geese in my yard.

When I set Teddy down to try this lunch thing again, that's when I noticed my  hand was red. He had about a 3/4-inch cut on his head, which hadn't started bleeding when I first looked. Thankfully, it wasn't gushing blood, so I was able to clean it with a clean cloth, rub on some antibiotic ointment and continue with lunch. I also gave him some Tylenol because that would hurt my head.

Fast forward 40 minutes to getting on the bus, and his head looked horrible. I felt guilty sending him, but he wasn't bleeding, he was acting completely normal and he would have been one unhappy kiddo if that bus passed by without him getting onto it. I did send a note to explain what happened to his teacher (and, of course, that was the one day that somehow his backpack never made it off the bus to go into school). I also called her to let her know that if the school nurse looked at it and felt it needed further attention, that I'd come pick him up.

I also called our doctor's office just to confirm there was nothing else I should have done ... as soon as he climbed on the bus. (Hey, there's only so many minutes before the bus arrives. Food and a clean diaper are pretty important.)

And that's his first school nurse visit. AJ's already racked up two, so Teddy maybe feels he needs to catch up.

Sunday, October 15, 2017

There's a Storm A'Brewing (aka Halloween Preparations)

I've been planning Teddy's Halloween costume for more than a year. Last year, we used his Kimba Kruze chair to get him around the neighborhood for trick-or-treating since walking required so much effort for him. He was cool enough as a hot air balloon, but I said that I wanted to make him into a tornado when he could walk.

He's such a destructive force of nature that it's only fitting. (My other idea I got this year was a pinball in a pinball machine after watching him bounce off the walls, doors and people at AJ's school's pumpkin walk last night.) Since it's so fitting, I remembered my idea this year and put together his costume in less than an hour.

The irony of the fact that he'll likely destroy this costume the first time he wears it is not lost on me ... despite the oodles of hot glue holding it together and cars strategically placed where he wouldn't notice them immediately.

He's a force of nature to be reckoned with ... that's for sure. I'm just hoping this costume holds up through the afternoon at school that he can wear it again trick-or-treating in the evening without needing to do too much repair.

Now, the question is whether I am ambitious enough to go as Dorothy.

Monday, October 9, 2017

I Can Dance If I Want To ...

Ah we can dance if we want to, we can leave your friends behind
Cause your friends don't dance and if they don't dance
Well they're are no friends of mine
I say, we can go where we want to ...

That last line is certainly true when it pertains to Teddy and the dance floor. We attended a wedding reception this weekend, and both boys were extremely excited to hit the dance floor. AJ has dance moves I'm not quite sure that I've ever seen before in my life as well as near perfect renditions of others I never expected to see my child perform, such as running across the dance floor and dropping to his knees to slide across it or learning the Cupid Shuffle in one night when I haven't mastered it after all these years.

Teddy's dance style is a bit less refined. It involves a lot of face-paced walking around the dance floor, using other people as bumpers to redirect him. Hey, look at this pretty, sparkling white dress! I should touch that! He did some foot stomping and quite a bit of upper body shaking and swaying, complete with holding onto his shirt while he danced. He was rather intrigued by the stage where the DJ was, so we had to provide some redirection there. He was also interested in the photo booth (until we went to actually take photos, which is when he wanted to return to the dance floor). And the garland around the dance floor was rearranged a few times. Hey, I should hold onto this while I dance. Oh, it comes with me? Cool.

I watched with a mixture of pure enjoyment at their happiness and amazement at how far Teddy has come in roughly the year since the last wedding we attended. Then, Teddy needed significant handheld assistance to walk, was carried a portion of the night and spent most of the night walking around the DJ booth because he was fascinated by the lights there.

This time, Teddy could go where he wanted and do what he wanted, as much as we would allow him. Seriously, the child made a beeline for the dance floor every time he could. Sorry, but you're not the groom or mother of the groom. Nope, not the bride or father of the bride either.

Teddy had an absolute blast and was in his element, surrounded by people, movement, lights and music. Oh, and cupcakes. ;-)

Friday, October 6, 2017

Integrated Play

Teddy's class consists of 5 other children who need the additional support that a traditional classroom, or even an integrated one, doesn't provide. Yet the intention is still to provide opportunities for Teddy and his classmates to integrate into the traditional 4K class across the hall.

Today Teddy's teacher sent a text, "Look who integrated in 4K during play today!"

He had to check out the tools.

He played with trucks.

A rare moment of Teddy sitting still.
I appreciate that Teddy's teacher sent these pictures. I am grateful Teddy has the opportunity to play with other children his age because he loves being around people. Yet I still can't deny there's a part of me that wishes it wasn't a notable thing that he played in the traditional classroom. Hopefully these kiddos come to know Teddy well enough to be excited when he joins them.

Wednesday, October 4, 2017

Patriotic Teddy

Two days ago, Teddy went to school looking very patriotic. He was, quite literally, red, white and blue:

The red is quite obvious Blue was on his hands, so you can see a bit peeking through around the drill.
We had an appointment 30 minutes away to pick up his new braces, shoes and compression shorts and shirt. He was agreeable for that and downright excited when he got to try out adapted bicycles (more on that when it arrives ... he got approved today!). But when we got in the car to head home, the screaming started.

And it continued for about 20 minutes of tired, crabby Teddy who wanted nothing to do with any snack or drink I offered him. When he found AJ's zipper pockets, he finally settled down. That's because he was happily coloring ... himself. He colored his hands blue and his face (and half the back of his head) red. He even managed to color inside his ear.

Needless to say, the screaming resumed when I pulled off the highway to take away all the markers. As soon as we got home, I put him down for a nap and spent a good 10 minutes picking up all the markers, crayons and other drawing utensils from my car. Amazingly, Teddy fell asleep right away. Apparently the combination of the very tail end of a cold and ear infections in both ears and a lack of sleep for the last week finally caught up with him enough to take a mid-day siesta (as opposed to his stylish look of black bags under his eyes this past weekend).

I woke him up 25 minutes before his bus arrived and proceeded to change him out of his new compression clothes (since his classroom would be in the 80s that day), which meant completely undressing and redressing him, including his braces and shoes. I also had to change him and write a quick note to update his teacher on those two ear infections. Oh, and I had to feed him lunch, which was the most challenging aspect because it's hard to feed a child who's screaming because he's still waking up.

We finished his lunch with me chasing his shirtless self around around our driveway, holding bites of food in one of my hands and a Kleenex in the other. When the bus turned onto our road, I did one last nose wipe and pulled his shirt on him.

Needless to say, that 25 minutes did not include any time for washing the marker off him. So that is why Teddy went to school wearing red, white and blue. (He's my child, so he's inherently pasty white.)