2.3. Months - November 21

I out off writing this all day yesterday. Not forgot. Put.it.off. We had an appointment first thing in the morning and I dated something 11/19 and they corrected me...so I was well aware. But that meant that I only have 30 days left of NOT having a two year old.

This month we have had our ups and downs; you have made progress in some areas and regressed in others; we've good appointments and just ok appointments.

Here are some things we learned / relearned about you this month:

You. Are. Stubborn. Ok, so we knew this. And we relearn it on a daily basis. But this month, others got to start learning it. We've been trying to convince your PT for a while now that there are days when we don't get any exercises done with you, not because we don't try but because you don't want to. Period. And if you don't want to, it's not happening. We've been trying to get you to use your gait trainer on the carpet (which you do better at now, but at first...) and your PT told us to just put you in it and let you face the wall. Eventually you would get tired of looking at the wall and push backward. Ten minutes later....you were still staring at the wall and she gave up. Lexi -1; PT -0.

We also learned that you are stronger that super glue. And Gorilla Glue. You have to have a strap across the toe of your AFOs (ankle-foot orthotics...aka your boots) because your toes don't lay flat. But the way they make them leaves room for fitting when we pick them up so they can't bracket that strap down until they know where your toes lay so they use an adhesive velcro. Last set of AFOs you totally destroyed the toe strap. Pulled them completely off AND the part of the velcro stuck to the boot. This round, they used their strongest adhesive. Those lasted about 5 weeks. So I super glued it back on. It was off 2 weeks later. So I tried Gorilla Glue. That lasted a little longer...but 3 weeks later it's gone. Sigh.

You LOVE race cars! We had a chance to go to a slot car racing shop with one of my cousins earlier this month and you absolutely loved watching the cars go! They also had a derby car track and some matchbox cars and you had more fun getting the cars and letting them go down the track than anything I've seen in a long time!

You will not give up once you want something. Maybe that fits in with stubborn, but I'd call it more determined. When you are on your scooter in the kitchen and someone is in your way, you've started pulling at legs or pushing them out of the way so you can get where you want to go. If you want the pantry door shut, it doesn't matter if someone is in there or not...it's getting shut. If you want to go down the stairs you will sit at the gate and bang on it and yell until someone comes to help you. If a door is closed and you want it open, you sit there and knock. And knock. And knock. And then start with the Mamamamamamamamamama until it gets opened. We're working on that one.

New words for you this month: up! Da-ddy (much more clear -dy sound at the end); I di (which means either I do, I did, or I am depending on the context); da (yes); and you've been working really hard on saying "Donna" (speech therapist - who is just thrilled) and Nanny. You do really well at imitating and will at least get the right number of syllables in the word your copying.

You absolutely love being on your scooter in the kitchen. It gives you complete freedom to be a mischievous almost two year old. I have found bowls in cabinets they don't belong; I've found your new truck on the bottom shelf of the pantry where you traded it for the bag of chips. And you love helping with the dishwasher, but are not too happy with me when I don't let you play with the dirty dishes. You are so fast on the scooter it scares me sometimes! Your latest trick is to sit and spin in circles...

Lastly, you are making such good progress with your PT! You don't yell and scream (mostly) anymore and are so thrilled when you figure something out. You are soon close to being able to walk without anyone helping you when you're holding on to the couch. You've got the standing part down - and actually ask to be put in your stander now. You spend about 30-45 minutes in your gait trainer and 3ish minutes in your stander every day.

And here's a video just for fun: we were playing fetch with your puppy!

Keep growing Baby Girl - but not too fast :)

Test Results, Costumes, and Tantrums - Nov 5

Being two years old must be much harder than any of us remember... at least that's what you need us to think right now to justify the amount of attitude and tantrums that you have been having lately. Fortunately, they are short lived and just include you screaming (for about two seconds) and crossing your arms. Usually in response to someone asking you to put your toys up or if you want to get in your stander. At this point it's still comical, but you have had a few that require you to be put in time out. You weren't a fan of that.

We got the sleep study results back from the October 14 sleep study last week, but I haven't had an opportunity to write about them yet. Bottom line: you didn't do as well as they hoped, but it wasn't awful. You had a significant enough increase in apnea episodes with your trach capped (completely blocked off) that they are concerned, but not enough that they think you need to be back on the vent at night. So, good news and bad news. You will go back to using an HME at night (a filter that allows you to breathe through your trach and provided moisture) so that you have some extra breathing room; this has proven to be a bit of a challenge because you aren't used to all of the extra moisture and haven't adjusted to that yet. The extra moisture causes secretions to increase, which means you have to be suctioned more, which also increases secretions because it irritates your airway (vicious cycle). So far, you've only had to be suctioned once because you've been able to cough and clear all of the secretions.

Right now, we've got a bronchoscope scheduled for February 16 to take an internal look and make sure there is no extra tissue growing or anything blocking your airway; the next sleep study is scheduled for March 24. My job between now and then is to get the pulminologist (who thinks the apnea is caused by your anatomical structure - which isn't likely to change between now and March) and the ENT (who says there is nothing we should be doing between now and then) to agree on SOMETHING we can do or try, otherwise the results in March will not be any different and we'll be right back in the same boat and delaying decannulation even longer. Quite a task for Mama to take on.

In other news, you were the cutest little Dorothy ever (I say that with 100% bias because I know of at least four other little girls we know who were Dorothy and I'm sure their parents said the same thing to them) and you had such a great time at the Fall Festival this year! You even let Big Big's friends take you and play with you some so Mama got a chance to take a break :)

You also had a great time watching all the kids come up to our house to get treats - although some of the costumes you were a little unsure about... You wanted some of the toys we were passing out and seemed particularly enthralled by the finger lights and glow sticks!

Last thing, we pulled out this old toy to give back to the PT who brought it to us so she could pass it along to another patient and you have played with it non-stop since we got it out! Guess we need to start doing that with some of your other toys so that they can be "new" again too :)