The Good, The Bad and The Ugly - 22 months! - Oct 20

So this is a catch up on the last 16 days since my last post PLUS (thanks for the reminder Nanny!) today is in fact the 20th which means you are officially 22 months old. Sigh.

This will be a bit of a boring post because I can't attach photos or videos from my phone and my laptop is currently at the Apple repair center so I'll have to come back and add some later. Here we go:

The good: you have done FANTASTIC off the vent at night this month. You have only had a handful of desats (when your oxygen level drops below 90%) and it didn't take you any longer than it would have taken a "normal" kid to get over your cold before the sleep study. You were down for about 3 days and then another two before you were really 100% again. You are now so much more talkative than ever! You will say Mama and Dada now (although if we ask you to say this one you still say uh-uh...insert video here later!); Big Big's name (and will scream in excitement when we ask where Little Big is); you have gotten really good at P sounds and will start saying pu-pu-pu when you hear a puppy. We don't have it on video yet, but we have two witnesses to you saying bubble and bye-bye! You pretty much chat and jabber all day long now. It's awesome.

You are eating EVERYTHING lately! And lots of it! We had a bit of a set back when we had to switch to dairy free, but you took it like a champ. You've had no trouble adjusting to the formula, love some of the new snacks I found and didn't decrease your oral intake whatsoever. You're doing super awesome drinking out of your cup (usually 6-10 oz a day!) and have even started drinking a little bit of juice every now and then! At least once a day though, you still ask for goldfish :(

Chicken nuggets and french fries are your FAVORITE right now!

You absolutely love your gait trainer and spend almost an hour every day in it. We've started working on using it on the carpet, which you're not a fan of, but you tolerate it. Your legs are continuing to straighten out; they will be so thrilled in November when we go back to Shriner because we've had to adjust your leg braces twice already to accommodate the change. We've also had to adjust your stander two more times to make it taller!

You really love taking it outside so you can see the neighbors' puppies

The Bad: you will definitely have your trach in until the spring. We found out at your last ENT appointment that the pulminologist should not have been the one to downsize your trach...whoops. And that it should have only happened after we did another internal look...whoops. And that this last sleep study will not factor into the trach removal...boo. It will, however, determine whether you get to stay off the vent - it is a pulminology check sleep study to make sure your lungs are keeping up off the vent. She agrees that it should stay in through the winter just in case you have any respiratory issues - we know we have an access point for anything we need. So the tentative plan for now is to schedule an internal look in February, followed by another sleep study to check for any airway / other ENT related issues; based on those results, look at scheduling the removal in March. The other factor in all of this is your foot surgery. We have to talk to the doctors at Shriner again and get them in touch with your ENT because both she and your pulminologist would be more comfortable if they did the surgery with your trach in place because of your intubation issues. It's a guaranteed access point for your airway and they won't have to worry about the difficulties you've had in the past with being intubated.

Big girl in the waiting area - you have always gravitated toward this steering wheel,
and are now big enough to sit and play with it all by yourself 

You're still not eating quite enough for them to decrease your tube feeds any, so not much progress on that front. At least your weight gain has been steady, even though it's minimal.

The Ugly: I put this one here because it's good and bad and I don't know how to react to it yet: you've maxed out your goals for occupational therapy until you turn three. Obviously, I'm thrilled that you have done so well and met all of your goals so quickly (most of them early!), but it means that the beginning of November is our last week with Ms. Regina coming to work with you twice a week. I'm nervous about keeping up with all of your exercises, but I plan on keeping that time slot reserved for working on OT related tasks with you. And I will (and I think you will too) flat out miss Regina! I forget sometimes that your nurses and therapists have only been in our lives for a year and half; they've become part of our life, our household, our family and it will not feel right to not see her :(

Hiding so you don't have to clean up after a therapy session...

So that's why that's the ugly part. The other ugly part is your two year old attitude that has continued to manifest itself in ridiculous fits and (often comical) tantrums. You are learning that those don't change much of anything though so they've gotten slightly shorter at times.

That's all I've got for now - once I get my laptop back I'll add in some videos and photos to illustrate just how awesome you are and how much you've grown and gained this month. Until then, keep pushing Baby Girl!

A New Diagnosis - October 4

Last Tuesday you started coughing.

By Wednesday morning your nose was running like a faucet, your eyes were red and you just had that look that clearly said "Mama, hold me I don't feel good."

Thursday greeted us with a short-lived fever and a not great report from the night nurse.

By Friday, your nose had dried up and eyes weren't watering. But that cough.

So we ran through the scenarios that have followed a dry, racking cough in the past:
-- not likely to be an ear infection; no drainage from your ears and the fever didn't stick around.
-- not anything in your lungs; they sounded clear and the nebulizer treatments weren't helping.
-- nothing to do with your trach; it was clear and you weren't coughing anything up.
-- possibly allergies, but the cough syrup and allergy meds weren't making a dent.

I gave in and took you to the doctor where we got a diagnosis I never imagined:
You have a cold.

Yep. Plain and simple: a cold.

Nothing life threatening.
Nothing that requires hospitalization.
Nothing that requires massive amounts or intense regimens of medicine.
Nothing that could delay the progress we're making toward removing your trach.

Just a cold.

It was all I could do to wipe the smile off my face and hold the laughs in until I got to the car.

We just got our first perfectly boring, nothing but ordinary, run of the mill diagnosis!