Easter Morning Shenanigans

Let's just say that Teddy was concerned it would take him extra time to find his Easter basket, so he got up early to make sure he had time to find it before 5:45 a.m. sunrise Mass.

That's the only logical explanation for him waking up at 1:50 a.m. and staying up for the day, right?

Nevermind that he didn't know he was getting an Easter basket. Or that he didn't care about looking for his basket that was right in front of him. Or that he didn't want to play with anything from his basket until he realized there was a giant chocolate rabbit, which happened around 3:20 a.m.

Think he's happy?

Now, most parents might not let their child eat a chocolate bunny at 3:25 a.m. Then again, most parents aren't awake with their child at 3:25 a.m. Nor have most parents been up for 1.5 hours with that particular child.

Those ears don't stand a chance against Teddy.

He enjoyed that bunny. He decided to start with the ears and then eat off the tail. His audience included me, Dave and Dave's mom. We spent a small portion of the night sleeping at their house to go to Mass with them. We spent a larger portion of the night playing in the basement with Teddy.

If this pattern of party all night when we're not at home continues every time we're not at home, I'm not quite sure what we'll do. (Curse and cry are givens for me, but those won't solve anything.) I'm not my best self when I get less than 4 hours of sleep. Teddy's not his best self when he only gets 6 hours of sleep, although he smiles a lot more than I do on that little sleep. We're still all a bit sleep deprived, so we're hoping for another restful night tonight.

He's lucky he's so stinkin' cute.

Doctor's Visits Galore

Let's just say that if there was a prize for most doctor's visits or amount of time spent at and/or commuting to doctor's visits for a 28-hour period, Teddy and I would have been strong contenders.

It all started Thursday morning when I decided to try on one of three shirts I was considering donating. Somehow, in the amount of time it took me to pull on one shirt, Teddy hurt himself with a smooth, rounded plastic coat hanger. My first clue was him crying. My second clue was his mouth filling with blood. There was so much blood in his mouth that he couldn't swallow while screaming hysterically. In fact, when he coughed on the blood, my face got splattered with blood.

It took me a half hour of wiping blood away, consoling him and attempting to peer in his mouth with a flashlight to figure out where the injury was. My best guess is that he stuck a coat hanger in his mouth, fell or dropped to the floor and pierced the bottom of his tongue by jamming that hanger into it. The injury didn't go completely through, but I got a glimpse finally of a wicked looking wound that prompted me to head right to the walk-in clinic.

The walk-in clinic took one look at his tongue and said that something needed to be done, but they couldn't do it there. So they walked us down to the Emergency Room. This was our first time back at the ER since the horrible seizure incident in December, so it's not exactly where I wanted to be. Neither did Teddy. Between the pain and the fear of doctor's offices/procedure rooms, he was crying the entire time despite being snuggled by a carrier to the front of my body. (Umm, can I get a gold star for managing to get him loaded on my front and hooking the back by myself 3 times in 1 hour? That's a record for me.)

The ER doctor took one, quick (not quite sure he saw everything) look and said it would heal itself. He said he could put in a stitch, but that would require sedation and would likely be chewed out within minutes. I was fine with that and figured Teddy would settle down pretty quickly once we left.

But he didn't.

Thankfully Dave came home early from work and then spent all afternoon at home while Teddy cried, whimpered, napped for 30 minutes and cried some more. He finally settled down after supper (without eating or drinking much because of the pain). Let's just say it was a long day from 10:30 a.m. when the injury happened until I collapsed into bed at 9 p.m.

Unfortunately, the pain medicine wore off, so Teddy was crying in pain at 3:30 a.m. That meant that all of us, including AJ, were wide awake by 4 a.m. Teddy settled down about 30 minutes after his medicine kicked in, but no one got any more sleep.

Teddy and I took off at 6 a.m. to head to Milwaukee for a couple doctor's appointments. The first was his ENT, which was extremely quick as usual. We'll be getting a call within a week to schedule surgery to remove his adenoids the end of March/beginning of April. This is a good thing in our minds. It should hopefully minimize ear infections and reduce his chronic runny nose.

We enjoyed a bit of time with my aunt before we headed to his physiatrist appointment. This was one of the recommendations from NIH, and I wasn't sure what to expect. I was pleasantly surprised because the person was fantastic with Teddy and spent 1.5 hours getting a really detailed history, observing Teddy's motions and body and discussing recommendations. She's coordinating with the person who does Teddy's braces to adjust them slightly to give him more toe mobility to help with balance, but she doesn't think we need to pursue different (taller) braces. She said we can discontinue the use of his SPIO compression garments once he outgrows the current pair as they tend to provide minimal assistance once he reaches this size. She's also going to put in orders for outpatient PT and speech therapy and coordinate with them about pursuing therapy now and then for the summer.

In case you haven't gathered, a physiatrist is a doctor of physical rehabilitation who coordinates therapies and adapted equipment. We had never heard of that type of specialist before NIH, but I'm excited to have someone to coordinate all his therapy between outpatient and at school as well as all his adapted equipment. I think this will be a good thing for us, and it will likely be paired in the future with a neurodevelopmental psychologist to help understand how to best motivate Teddy to work toward progress. That'll happen this summer, at the earliest, since it will be a series of lengthy appointments to really get to know Teddy. The physiatrist will look the report we get from NIH once we get it and see if it's sufficient. My guess is that it won't be as thorough as desired, so we'll probably go through the process. The appointments should be mostly play based, which really shouldn't be bad. It's just that we need some time between the week of NIH testing and any more extended testing appointments.

After that, we had our drive back home, getting home at 2 p.m. with a full 8 hours of travel and doctors' appointments. Now, where's our medal?

Back-to-School Stress

The morning radio show yesterday shared the top three stress points for parents regarding children heading back to school. They were, in no particular order, waking children up for school, helping with homework and packing lunches. Then they opened it up to listeners to share their biggest stress points ... and my mind went through my list of questions and fears.

Let's start with the fact that Teddy is not able to communicate, verbally or otherwise, what happens to him at school. He's going to a brand new school with likely a brand new team of therapists (that won't be determined until after school starts) where he knows no one. (OK, that's not true. I discovered last week my goddaughter and her cousin go to the same school, but they are in much older grades and likely won't cross paths often, if ever.)

That means that if something horrible happens to him, I won't know unless someone tells me. That means that if he has a miserable day, I won't know unless someone tells me. That means that if someone makes fun of him, I won't know. That means I will have no idea how he spends his day, what he does in therapy and whether he's enjoying himself and making progress ... again, unless someone tells me. That means I won't know when he does something amazing or makes someone's day with his mega-watt Teddy grin ... unless someone tells me. I won't know who his friends are or if he even is friends with his classmates. I'll know nothing unless someone tells me.

I know I can work with his team to get regular communication and key updates, but just think of all the little things children tell their parents about their days that I never get to know. And now that I'm in tears, I'll move on with my laundry list of stress points in a handy bullet point list:

• Teddy had a horrid time with his bus rides home from school last year for the first two weeks, screaming hysterically the entire ride home. At least I could get a report from AJ about what happened because I felt like neither the bus driver nor the aide were willing to speak to me or even make eye contact when I helped a sobbing Teddy off the bus day after day. I really don't want to repeat that experience, especially since there's no AJ riding the bus with Teddy this year.
• I worry about Teddy being picked on. I know he will be. I know kids will stare, laugh, point and do far worse things because he is different than them.
• I don't want AJ being picked on because of Teddy ... or AJ hearing other children making fun of his brother. I know both will happen, probably not this year at school but still on my list.
• I realized that Teddy is one of the 11 most profoundly disabled children in his age bracket in the entire school district. One of 11. And given what I know about his class last year, I'm going to go on a limb and guess he's one of the 5 most profoundly disabled children in his age bracket. This was somehow an epiphany to me despite being with Teddy much of my days, taking him to therapy and knowing his strengths and challenges. Somehow, it never occurred to me in that context until this week. Most of the time, when I'm not stressing about school, Teddy is just Teddy and that's perfectly normal.
• Then I wonder how on earth our home school, where AJ is going this year, will accommodate Teddy next year? I can't even picture what that looks like because Teddy is at such a different skill set than other children his age. 
• Then I worry about Teddy and AJ being at different schools and all the additional questions and stress points that come along with that topic.
• The next illogical step for me somehow jumps all the way to Teddy moving into the adult service world and living in a group home because I'm afraid he'll require that high of level of care ... and feeling like a horrible parent for contemplating placing my child outside our home and wondering if group homes will still exist or if we'll move backward as a society to institutional care because it's cheaper and blah blah blah.

That, my friends, is my short list of back-to-school stress points. Oh, and I still have to figure out whether AJ is taking hot lunch or packing lunches.