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 Teddy—not that there was—it 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.

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.

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.

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?

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.)

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.

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.

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.

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.