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 :)

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!

"Official" Test Results - Sept 19

So we went to our appointments on Thursday, got the "official" sleep study results, went to your weight check, and left with smiles on our faces :)

Here's a little side-by-side comparison of this sleep study with the last one in June...

There are links in the last post to what the big words mean :)

Needless to say, both the Pulminologist and the Sleep doctor were THRILLED with the difference. Who knows if it was the congestion, the sleep tech, the equipment, or what in June - but here we are. We officially downsized your trach back to a 3.5 on Friday, and the cap is back on! You haven't had any trouble so far (it's only been two days) and slept just fine last night so hopefully you can keep it up. The next sleep study is scheduled for October 14 to see how you are doing capped and off the vent - then we'll talk timeline for removal!

I mentioned to the pulminologist that Shriner is waiting for the trach to be gone before they consider the foot surgery, and that it would be great to go back in November without the trach. Her response wasn't promising - but maybe we'll at least have a timeline by then to be able to get things rolling. (Her main concern is taking the trach out before winter really sets in, just in case you get sick and need the support - understandable but BLAH!)

After that appointment we went over for your weight check - you've gained an average of 6 grams a day since we were there last. Not stellar, below average, but it's still an upward trend. We talked with them about the milk allergy and they've switched you to a different formula that's made without any dairy whatsoever. The good news: you seem to be tolerating it well so far (again, only day 2); the bad news: Mama gets to wash bottles two times a day (day and night shift) and measure formula and it smells. I'll manage :)

To offset the barely there weight gain - you grew 8 cm (about 3.14 inches)!!! There have been several comments made in the last month or so about how tall you were looking, but we just attributed it to the fact that we got your leg braces, and they're already making a difference in how straight your legs are. Apparently, you did some growing too!!! The dietician didn't believe it at first and asked them to remeasure, but sure enough - 8 cm!

So the last two days we've been floating on happy news - Daddy was home with us all day yesterday (unusual for a Friday!) and you enjoyed getting to spend some time with him. Today we've been lazy - you did some playing, took a nap, played some more and spent some time in your gait trainer. You really love being in that thing - and usually head straight for the back door to look outside!

So this afternoon we decided to go try out the new patio that Grandpa, Daddy and I worked so hard on! It was mildly successful -

Right after this, you backed up too far and hit the downward incline on the edge and it sent you rolling into the grass...you weren't too thrilled about that :( I had just gotten you calmed down from that when you backed your head into the table I had just moved outside... we were done with walking for the day! On the plus side, we got the gait trainer adjusted so that you can't lean back so far anymore and it's really making a difference in how well you're able to move your legs and propel yourself forward!

Keep moving forward - we'll get you a mirror for backing up!

Lots of Happy Things Here - Sept 14

So I would love to be able to blame not posting in so long on the fact that we've been busy with back to school stuff....but that wouldn't be completely truthful :)

So here's what's happened in the last 3 weeks:

If I had posted on August 27, I would have talked about how awesome you did in your new boots the first week and how being in the leg braces at night didn't even phase you! They had initially told us we might have to wean you in a couple of hours a night, but you took to them with no problems and didn't even move the first night they were on!

I would also have talked about how hilarious your face looked when you got to the top of the stairs and realized that there was a gate in your way now...you were not pleased. But it has turned into a fun game of throwing balls down the stairs and watching them bounce ally the way down.

The last thing I would have talked about is finding a super cute Halloween costume for you, but I wouldn't have said what it was :)

If I had posted the next week, on September 3, I would have talked about how you don't like throwing things down the stairs as much anymore because your therapists made it into a standing "game" that you don't enjoy near as much! I also would have complained a little bit about how BIG you look standing at the top of the stairs!!!

I probably would have also mentioned how much you have enjoyed your new found freedom to "roam" the upstairs and how gracious Sisters have been in letting you explore their rooms (for the most part)

Last Thursday, I would have talked about how we had to take you in for you 18 month appointment (only a few months late...) because I had to talk to the doctor about something and realized that we never scheduled your 18 month appointment because your doctor was out of town, and then we were, and then she was.... and how unhappy you were with the two shots you got. We were also finally able to really talk to the doctor about your allergy test results from June. Your overall allergy indicator was normal (meaning no allergies) but you have a slightly elevated (2 out of 6) indicator for cow's milk and egg whites. Confusing test results for you? Shocker. So your pediatrician would like for me to talk to your nutritionist and GI doctor about switching you off of the PediaSure (yay! and nooooo more changes!) onto something that has no milk in it. Her thought is that there are several things that might clear up with this: 1) I was never on a dairy free diet when I was pumping, then you went straight to whole milk then onto 2% because it upset your stomach so much... switching to something with no milk whatsoever could help clear up the constipation issues you've always had. 2) You've had a perpetual rash around your g-button and bottom that could potentially be caused by the milk allergy; and 3) since it's such a slight allergy, it could be contributing to the amount of phlegm you've always had. We shall see.

But I would have countered all that news with the fact that your leg braces are already making a huge difference - we had to adjust your stander because there is already a difference in how straight your legs are! I would have posted this picture that shows you standing BY YOURSELF and talked about how excited we were that you stood for almost an entire minute before you realized no one was holding you up!

I also would have talked about getting the most exciting phone call on Friday - your gait trainer was ready!!! And how that was perfect timing, because we had already made plans for Grandpa to come help us turn our front "garden" into more of a patio so you could join us in our inclined front yard without having to worry about you rolling down the driveway!

I would have also talked about how excited you were when the gait trainer actually got here!!! And how quickly you took to it... kind of. You were not wanting to get in it at first, and then you slammed your feet down like you were stomping and it made you move. You froze. Then got a big smile like you remembered what this was for!!!

But then about 15 minutes later you were an old pro at it :)

You've done really well - you've stayed in it about 30 minutes each day since we got it before you start getting tired of it.

I also would have talked about how nervous I was about your sleep study that night since you had been congested and coughing for a little over two weeks. It's almost like you knew that it was time for another sleep study and got sick... Maybe I would have even waited until Friday so I could post this picture of you and talk about how much more patient you were with the sleep lab tech in getting everything hooked up, and how it didn't take them nearly as long this year. But then I also would have had to mention that I had NO IDEA how the results were going to turn out because you kept coughing stuff up out of your trach and into one of the sensors so they had to wake you up every hour to change it and you did NOT like that; and how I was not looking forward to waiting a week to find out the results.

So that's what all I would have said if I had written each of those posts...Why am I posting today you might ask? Because today your pulminologist called. She is usually the one that gets to deliver the bad news (She has an underdeveloped lung; she needs a trach; she'll be going home with the vent; her sleep study results were invalid/ inconclusive/ confusing/ really terrible...) so she wanted to call and give us some GOOD NEWS:

Your sleep study went REALLY WELL! They want us to reduce the size of your trach again, go back to capping it at night and being OFF THE VENT, and that the sleep doctor has reserved a spot on the October schedule to repeat the study with the trach capped off to verify that the results from the June sleep study were a fluke and that you're ready to be off the vent and the trach come out!

I am SO glad she didn't make us wait until Thursday to find all of that out :) Sisters and I decided to celebrate when I picked them up from school!

So now this Thursday I can give some good news from them, and hopefully some good news from your weight check and visit with the nutritionist about the allergy issue.

The Big 2-0...Months - Aug 20

Things have been SO crazy since sisters came home but you have absolutely loved the attention you've gotten from them. You definitely missed them when they were gone!

Your attitude has continued to...evolve (I'll use that word instead of others Icould choose...) You have good days and bad days. When it's a good day you love everyone and pass out hugs and kisses like they're pennies. But on your bad days (like today) you latch on to grudges of any perceived slight (like someone asking if you're hungry or want to play) and those smiles and kisses become more like diamonds. 

Your love of anything crunchy has popped out over the last week or so and I'm pretty sure you've devoured a box of cheerios all on your own! You have gotten back into eating more of your vegetables and Mama finally remembered to get some more sweet potatoes and a butternut squash. Yesterday, you wouldn't eat anything (teething) but I handed you a chunk of sweet potato and you went to town! You are definitely in the phase where you want whatever is on Mama's plate (even if it's the exact same thing as your plate) and have started helping yourself to whatever you see.

Chicken Express roll anyone? I missed the shot of her grabbing the drumstick...

You have added three more signs to your list: bubbles, drink/water and yes. You aren't able to do them exactly correct because of your limitations, but you've done them consistently enough that we know what they mean. You've also added the bababababa and papapapapa sounds to your rambling so when you talk it sounds like mamamamamabanapapapapababamamamama. Apparently, whatever that means is REALLY important though because you always have a super serious face when you say it!

You have really enjoyed playing ball this month - especially with Little Big:

You recently discovered our rocking chair and had a blast in it - you've sat in it before with Mama but this time it was apparently WAY more fun!

Another super fun activity we've been enjoying is bike riding! We finally found a baby seat that wasn't a million dollars and you have gone riding with Mama a few times.  You were really hesitant about the helmet at first, especially after I buckled it under your chin, but the ride made it worth it!

Bath time is still your favorite, but now you do a lot more playing with your toys than just splashing. You like lining up your duckies on the edge and have figured out how to put the bowl on your head all by yourself! Yay for arm range of motion :)

We got new AFOs (boots) today, as well as shoes for when you're standing to help encourage you to bear weight more. They also made some braces for you to wear when you sleep to help straighten out your legs / knees more. It was a long trip, and you were tired, cranky and teething, but we survived! The doctor said it might take you a few nights of getting used to the braces before you made it all the way through the night, but you are currently snoozing away without a care in the world about having something strapped to the back of your legs.

Keep growing and shining and loving people Silly Girl :)