Quarterly Update?? - Dec 26

I knew it had been awhile since I had posted, but I didn't realize that it had been THAT long! I kept telling myself that I would wait until the next appointment or the next big thing happened so that there would be something worth posting about...three months later: NOTHING!

But I guess that in itself is worth writing about. This fall we have been coasting. No major developments. No huge changes. No massive updates. Just living life and watching you grow. And it's been great!

So here's how we'll get caught up: this post will contain all the big things to get caught up for September, October, and November. I'll post something about your 3rd birthday party tomorrow and next week work on the Christmas post. After next week, I'll have something big to post about: You start school on Tuesday! You are pretty excited about "meeting new friends and learning As Bs Cs and mumbers" but you're also still pretty clingy when it comes time for me to leave you at Bible class so we'll see how those first few mornings go.

September: We went to a football game at Daddy's old school and you enjoyed it much more than last year. The boys kept "wunnin and wunnin and fall down". Now any time that we go past any football field we get to relive that game. "Mama and Daddy and Lainey and Lexi and Lila and Kate and Jess and yell 'Go Devyn!' at the football games!"

September also had a few more first:

You started using the big girl swings!

Got to go in the big pool for the first time!

First set of full pigtails! We tried ponytails a couple of times too, but they didn't last long!

October big moments: You went to your first wedding! You had a great time going to the hotel with Mama and Little Big; you got to sleep in the big bed with us; AND swimming in the big pool again.

Other big moments: we got a dog! You still aren't sure what to think about Patches getting to close to you, but love to play with him through the back door.

You discovered how to get into the cabinets but have surprisingly only pulled out this one bowl...

You were determined to walk around and get candy with the boys and Little Big this year, and walked quite a bit before you let us carry you...mostly because the boys were getting impatient and leaving you behind!

Most important moment of October, you got to meet my Great-Grandmother! We met up with Nanny, Grandpa, Gigi, Pops and Doe one day for lunch. Now anytime I mention Gigi and Pops, you ask about Doe too ♡

November was another semi-uneventful month for you. We started going to story time at the Library, which you absolutely loved!

We had a great time at Thanksgiving; got to spend a couple of days at the Ranch and got to see Grandmother!

We had an appointment with Shriners and they said everything was looking good! They want us to continue with what we're doing - more time in the HKFOs and walker, start taking the wheel locks off the front so you can learn how to control it better, more time standing and trying to walk without the HKFOs to build up your leg strength.

It was an overall (medically) boring three months! We haven't had any problems since your trach closure, you've continued getting stronger and we're just moving along! I've been collecting some videos of you singing so I'll add a couple on to each post :)

This is one of your favorite Bible class songs: What Time is It?

(What time is it? What time is it? Is it time to <brush your hair, take a nap, eat lunch, play with toys>? Oh no, no, no. Oh no, no, no. It's not time to <insert phrase>. What time is it? What time is it? Is it time for Bible class? Oh yes, yes, yes. Oh yes, yes, yes. It is time for Bible class!) Except in your version, it's time for bed!

And the B-I-B-L-E song:

AMC Awareness Day - Sept 14

AMC Awareness day is June 30 of each year. This year I had the unique opportunity to tell your story and share about AMC while we were at EYL Camp. In addition, the group took up a collection that we were able to take to the AMCSI Conference the very next week - what great timing!

You're probably asking, what does all of that stuff that happened in June / July have to do with a post in September? I've had several people ask me about the presentation I gave at camp and I FINALLY got it made into a video to be able to share with everyone! Building the presentation took quite a bit of mental (and emotional) effort - it was both amazing to look back at how far you've come and heart-breaking to look at how close we came to losing you a couple of times!

So here is that video:

Now for the fun part: you have made SO MUCH progress since June!!! Going back to the presentation just two short months later, it amazes me how out of date it already is!

We got your trach stoma closed in early August so we are completely through with that. Just yesterday we had a follow up with the ENT and she cleared you for aqua therapy - which is great because you LOVE the water!

She was pretty sad though because she is out of reasons to keep seeing you! She went ahead and scheduled one more check up in 6 months "just to make sure", but after that we are down one specialist! It's a bitter sweet thought because Dr. B has seen us through so much and has always been open and honest and direct with me about what's going on!

The clips in the video presentation show you slowly moving in your walker, but in the last two weeks it has finally clicked that you can go on your own and now YOU ARE GONE! You started chasing puppies at our family reunion over Labor Day and every day since then (with the exception of one or two) you have spent at least 25-30 minutes walking. We've gone from spending 30-45 minutes in your HKFOs to almost 3-4 hours straight - which the doctors at Shriners should be thrilled about. At the last visit they said they wanted us to work up to 7-8 hours a day and we almost laughed because we thought we were doing good to get the 45 minutes!!

My favorite walking experience in the last couple of weeks would have to be you walking into the NICU yesterday and getting to see your doctor, a few nurses, AND your PT, OT and ST all happened to be right there when you walked in. There might have been a few tears.

It is so hard to believe that we have only been home for two years now; but at the same time, every time we go back to visit it feels like a lifetime ago!

Most of our walking has been done outside - you've now mastered walking in grass, on sidewalks, going uphill and downhill, on asphalt and on dirt paths. Our neighbors have been pretty patient with us as we take up the entire sidewalk...and walk down the middle of the street sometimes.

Having family close by has given us a walking goal as well - the first week we were walking outside and you got it in your head to walk to Mimi and Papa's house (at the other end of the block). We made it across the cul-de-sac and past one more driveway before you gave up - but have asked a couple of times since then to walk there again! You've also really enjoyed taking your walker to Bible class and walking around the church building.

Slowly but surely making it to Mimi and Papa's house!

Took about 20 minutes, but she was determined!

EYL Camp - July 10

I've been working on this post for a few days now and trying to het things finished enough to be posted, but in between EYL Camp in Kerrville and now, we went to Tulsa for the AMCSI Conference and then I flew to Texarkana for EYL Round 2 so it took a bit longer than I thought it would.

You were so much more comfortable at camp this year - you really opened up and talked to so many more people! You had a great time with Nanny and LOVED helping her drive her chair. You got pretty good at it by the end of the week, but still haven't grasped the concept of holding the controller down to keep it going. Nanny said you had some pretty jerky rides a few times!

You actually ate really well this year at camp - which is usually not the case when we're away from home! You had a blast going to the dining hall every day and helping Mama count as the participants came in, giving high fives and waving and clapping to everyone.

The biggest part of the week for us this year was June 30 - Arthrogryposis Awareness Day. We were given the chance to share our family's story and present some information about AMC and how it has effected our lives. 

The participants were given the opportunity to donate money to AMCSI as part of the Big Give activity (in the past we've collected school supplies, sports equipment for an after school program, etc.) In less than three hours, they collected almost $500 for us to bring with us to the AMCSI Conference in Tulsa! We are so blessed that there are so many people who love and support our family, and this was an amazing out pouring of their love!

We took a big group camp picture this year and got some great shots with the students holding their blue bracelets up high in support of AMC Awareness Day!

It was a great week and you definitely have some more friends and fans after those few days!

Shriner, Surgery and Singing - August 20

Surgery went AMAZINGLY well! The ENT said it was almost a "normal" procedure...which is saying a lot for Lexi! It was a long two and half days at the hospital, but we made it. We watched Bunny (Zootopia), ElsaAnna (Frozen) and Horton (Horton Hears a Who) at least three or four times each. Read every book. Played with every toy. But overall, it was a much better stay than last time.

Smiling and Happy while we wait

Getting ready to head back - not as happy after this...

Time to head home!

This is what your incision looked like the week after surgery:

And here it is now:

Another suggestion the developmental specialist had was to start helping you learn how to type now because it will likely be a huge communication tool for you. I searched and searched for a couple of weeks but all kids toys have all of the letters in ABC order. I FINALLY found something at Walmart that looks like a little keyboard and you have been challenged to figure out where the letters are at when they aren't in order!

They made some changes to your HKFOs (hip knee foot orthotic) at Shriners so that they are much lighter and it made a HUGE difference! You've been walking really well in your reverse walker these last few weeks instead of just standing and crying!

Working on the video from AMC Awareness day didn't happen in the waiting room. Got the slides in video mode, just have to find a time when everything around me is quiet for about 30 minutes (HAHAHAHA!) to record the voice portion. I'm going to go ahead and post the EYL post because I don't know when I'll get the video finished and that post was started at the end of June and has just been sitting in drafts since then.

Singing has become one of your favorite things - lately you love singing the B-I-B-L-E, Days of Creation, Elsa Song (Let it Go), Olaf Song (Summer) Itsy Bitsy Spider and Twinkle Twinkle Little Star. You love singing with us during worship and usually start saying "More sing songs" after each one ends.

Two (or Three) Months of Updates - August

Trying to get caught up - in between the insanity of school getting out, being gone for different camps and conferences, getting sisters where they need to be and the few appointments we've had, I looked up and it's halfway through July!!!

So here's are all of the updates from recent appointments, accomplishments, adventures, etc:

Trach update: things have been going great with your stoma. No issues, no problems - hasn't healed up much more so we're still scheduled to go in to have it surgically closed on August 1. They said to plan for at least two nights in the hospital for observation so that will be fun...

Feeding Update: You have been consistently eating more and more (like half a teaspoon more...which in "normal" terms is not a lot, but is still huge for you!) and keep trying new things. You let us know when you don't like the new things fairly quickly... usually by handing them back to us. You had  GI appointment June 20 and he said everything looks great. They were thrilled with your weight gain (up to 22.2 pounds from 21.4 at your last weight check!) and glad to hear the blended diet was going so well. He mentioned that at the next appointment (in January) he wants to re-run the allergy testing and see if you have outgrown any of the allergies / intolerances that you previously tested for. Sometimes, after your body adjusts to real food after being on formula for so long your tolerances are much better because your body processes things differently. Crossing my fingers on the dairy issue because you STILL ask for cheese anytime you see it!!!

Developmental: We also had a developmental check up on June 22 and you were your usually cheerful, happy, cooperative self....HA! The appointment went about as well as any of your other developmental appointments: he asked you questions, you refused to answer, gave him looks like "why don't you know this?" and refused to show off most of your fun tricks. He made the comment that I should prepare myself to get a lot of calls from the principal when you start school because you will likely be bored the first year at school because you're at a 3.5 year old cognitive level.

We went back again on Monday to test out the power chair and they said it was like night and day difference in your driving! We got all of the paperwork done and submitted so now we just have to wait. You had a lot of fun sitting in the different chairs while we were there and talking up a storm while we waited. We had taken your old medical stroller to donate back so they could use it to loan out while families are waiting for their stroller and you insisted on sitting in it. It is CRAZY how much bigger you are! Your shoulders were at the top of the headrest - when we were using it, your head only went about halfway up the rest! All in all, it was a great appointment; now we just get to play the waiting game on the approval process.

We go to Shriner tomorrow so I'll post an update about that at the same time I update about the trach closure surgery.

I've had a couple of people ask about the presentation that I gave at EYL Camp this year for AMC Awareness Day - I'm working on a post about EYL Camp and in turning the presentation into a video so I will hopefully get that done in the next week or so (or while I'm sitting in the hospital waiting room...).

I also had some folks ask me how we do the blended stuff when traveling so I plan on doing a post about your blends and our process in general fairly soon too.

In the meantime, here are a couple fun things you've been working on:

You and Nanny spent the day learning Pat-A-Cake:

You love singing - this is kind of hard to catch, but it's you singing the B-I-B-L-E all by yourself. You repeat the second line a bit before you move on, but it's still awesome to hear you singing!

And just for fun:

Your first full pony tail! It only lasted about an hour...

Took the front off your crib so you're now in your Big Girl Bed!

You've been begging to go outside but it's SO hot - this was at 8:00 last night,
 and we were only out there for about 15 minutes!

AMCSI Conference - July 9

I know it has been too long since I posted an update, and there is a ton that I need to update on, but I wanted to take a moment to write a post about the AMCSI Conference that we attended over the last few days.

Wow.

That's all I have to say. From the moment we walked in, I was encouraged. Seeing people of all ages and from all walks of life, with and without AMC, gathered together in one place was... Just so encouraging. We got there right in time to walk into the newcomers reception (literally, out of the car to the meeting room) and you immediately began asking for your scooter because after being in the car for so long you wanted to move. Then people started introducing themselves and you had a tons of claps and a loud YAYYYYY for each one of them.

Within 15 minutes, we had been introduced to 6 other families from Texas - including one who lives literally 10 miles away from is. In New Braunfels. Down our street. RIGHT THERE. Apparently, there used to be quite a large grouping of Texas families who met up fairly regularly around the state but that has fallen off some. There are a handful of families in the San Antonio area who are wanting to get things going again so YAY! 

The second day, we heard from an amazing young woman from Peru who has put together a series of videos and who speaks to AMCers about finding their own way of doing things "My Way". We also got to hear from a doctor who is HUGE on going as far and as long as possible with bracing on feet before opting for surgery, 1) because there is a higher chance of relapsing issues the younger you do surgery and 2) it causes more chronic pain issues later in life the more surgeries you have. Interesting tidbit: the foot starts developing in the first 4 weeks of being pregnant and is completely developed by 8 weeks. By the time most women find out they are pregnant, the foot is as developed as it is going to get until birth. Amazing.

I got to go to a volunteer meeting and will hopefully get plugged in to the conference planning committee and helping the Texas group get a few meet-ups off the ground! After that I went to a session that gave advice on three or four practical, realistic stress relief techniques while Daddy and Grandpa went to a session about DIY Equipment for therapy and exercising. 

There were special sessions for Moms, Dads and Grandparents that were lead as peer to peer discussion groups and I was able to connect with some more AMAZING moms about what's working, what's not, ideas to try, and just talk about our kids (because what mom doesn't like to do that?!?).

By far, the best session was on advocating for your child - SO much information, so many ideas and so many things to consider!!!

I think the biggest benefit to the conference was seeing all of the other families  and AMCers - it was a great reminder of how far we have come, how blessed we are with your doctors/therapists/nurses and all of the support we have at home. It will continue to be something we try to attend as often as we can just for the support and encouragement.

Thank you, thank you, thank you to everyone involved with AMCSI and to the conference planning team for all your hard work!

(Lexi and I with the Board of Directors for AMCSI)

2 years, 5 months - May 20

There hasn't been a lot to update on in the last few weeks, the biggest news was that they did cut nursing hours after your trach came out so we lost our night nurses. Other than that things are trucking right along pretty smoothly. We were finally able to clear out the equipment and supplies that are no longer needed from your room - the equipment was picked up on Wednesday and one of our nurses took a lot of the supplies for her friend who does medical mission work. It's amazing how much space it cleared up in both your closet and the garage! The only things we have left that we use daily are gtube supplies and your pulse ox monitor when you're sleeping.

Trying to figure out why we pulled the suction machine back out!

On Tuesday we had follow up appointments with ENT and Pulminology. ENT said everything looked great, but your stoma is not going to close up anymore on its own. We have a procedure scheduled for August 1 for her to go in and close it up the rest of the way. It will be a two night stay in the hospital (again) but at least we know a little bit more about what to expect from that!

Pulminology said everything looked and sounded great also. The next big hurdle that she wanted to put on our radar was a lung capacity test...when you turn FIVE. We will continue following up with her regularly, but she said things will definitely be less intense now - winters will be our biggest "on alert" time, but other than that to keep moving forward. She was concerned about your lack of weight gain, but also understands that you are so much more active now AND was happy to hear that your oral intake has increased since the trach came out. We have an appointment with GI on June 20th so we'll see where we need to go from there.

After those two appointments were over, we had one more stop to make - the company where we got your medical stroller from. Summer goal: learn how to drive with a joy stick!

We will go back for another practice session on June 20 also; your PT is working toward getting a power chair for you to use when you start school in January! The tech at the company did tell us that if things got delayed there is the potential for them to be able to place a loaner chair at the facility (school building) for you to use until everything is cleared up. You were really unsure about the chair at first (as with most things) but by the end of your 20 minute test drive you had started figuring it out a little bit more and were getting a little frustrated that it wasn't going as quickly as you would have liked!

You continue to work so hard with PT - standing, walking, cruising, weight bearing - and LOVE playing with your kitchen too! It's awesome to watch your imagination running. You love making tea for Mama; though I have yet to get a recording of you pouring the tea, you know it comes out of the tea pot through the top...we'll just have to learn not to turn the whole pot over before we let you loose in the big kitchen! You did learn how to get water out of the door of the fridge and Nurse Tabatha helped you add in the sound effects - turn your speakers up and listen really carefully for this one:

We have a more consistent bed time routine now that includes singing some of your Bible class songs - which you love! Almost every morning when I get you out of bed you ask if we're going to Bible class. Here are a few of our favorites that we were able to capture a couple of nights ago:

The Days of Creation: you are working so hard to get your fingers to stand up!

My God is So Big: we hadn't sang this one in a while, but you remembered it!

And my favorite, Jesus Loves Me:

You have started talking so much more clearly in the last month (something that both the ENT and Pulminologist commented on) and it's been amazing to see you add new words and phrases almost daily. You started singing along with us a couple of weeks ago and when you don't know the words you will nod your head to the beat and open and close your mouth like you are lip syncing; it's pretty precious to watch :)

Our summer is looking to be a busy one, but not because of medical stuff (finally!). In addition to EYL Camp, and sisters' camps, we are planning a trip to Tulsa this July to take part in the 11th Annual Arthrogryposis Multiplex Congenita Support Conference. One of the online groups that I am part of mentioned it a few months ago but we were so uncertain about how our summer was going to look, if you were going to be having foot surgery, etc that we didn't think it would be a possibility. Now it is! I am really looking forward to getting to learn from some really awesome doctors, therapists, nutritionist, and families - but what I am looking forward to most is getting to meet with some of the other moms that I've been getting to know online and making connections with a whole new branch of our family! I've recently began visiting with a few who are actually from San Antonio / New Braunfels area who are going to be there!

Anyway, we've got a lot going on and I can't wait to see what else this summer brings us. We've got 4.5 more days until sisters are done with school and then the rubber hits the road for us!  Last Saturday you have been home for officially two years; today you are officially 2 years and 5 months old - I'm not ready to say I have a 2.5 year old yet, but it looks like I am going to have to get over that because nothing is slowing you down now!

A little outside / trampoline time... learning about static :)

Updates, Results, Pictures and Some Showing Off - April 30

I know you've been waiting on an update for several things so here we go:

Trach - things are looking GREAT! Your stoma hasn't quite closed up all the way, but it is getting really close. You have been so much more vocal over the last two weeks and it seems like your vocabulary has exploded - almost as if you've had all these words stuck up in your head, but they haven't been able to come out... Until now. Of course, every time we tell people that you start clamming up and refusing to talk. Like you did with your speech therapist. I was finally able to get video of a snippet of a 45-minute conversation you had about your books one day:

Your appetite has increased significantly also! We've gone from a point where I couldn't remember what you ate because you were barely even eating to I can't remember what you ate because you ate too much to keep up with. I still have to remind myself that "so much" is still barely anything compares to a non-tubie two-year-old though. I was bragging the other day that you ate four or five bites of beans and almost a whole tablespoon of rice - for you, that's monumental; for others, one mouthful. You've gotten a bit braver about trying new things also - the other night we had frito pie for dinner and you wanted to eat the chili. You took a few bites and then started dipping your fritos in it.

Foot Surgery: We made the trek to Houston for your regular check up at Shriner. The Upper Extremities doctor was not there that day, but we were able to get your hand splints adjusted. Lower Extremities were pretty happy with your progress, would like for you to spend more time in your HKFOs, and were NOT happy with the walker that our PT was able to get for us from another patient... So they sent us home with a new one! The PT knew that one wasn't in the best condition and was too big for you, but we didn't have the luxury of being picky - we'll take what we can get when it comes to not waiting for approvals! The new walker is perfectly Lexi-sized and you love it! 

The downside to the appointment is that they do not want to do the surgery on your feet yet; probably not until next year. They want you to be really solid in your walking and standing so that when the time comes for recovery PT, you won't be re-learning balance, center of gravity, how to step, etc. but just remembering it from before. They said it was similar to riding a bike - once you get back on it you automatically remember how to balance and pedal. If you are stable and steady walking in your braces, after the surgery you are more likely to just pop back up. Not what we wanted to hear, but it's where we're at - so we'll keep working on standing, weight bearing and walking and hope you progress like they want you too!

Blended Diet: this is going SO well! You have so much more energy, you haven't had any major illnesses, and you bounced back from your trach removal and bronchoscopy with no issues - all of which I attribute 100% to the blended diet. I was so nervous going in about how the hospital and nurses would handle the orders, but they were great! The dietician gave them the heads up that I would be bringing in your food and the nurses more or less told me to let them know what I needed, they would let me make the calls on how much of what, and how often. We did a few days of broth and crackers; came home and slowly started adding stuff back in to the blend. We did find out that you weren't digesting the avocado as well as we thought - the day we added it back in you had really high residual amounts after each feeding (we check before each feed to see what's left in your stomach from the previous feed) and you got constipated again. Did one more day with the full amount to make sure that was the issue; then went to half the amount for a few days, problems went down slightly but didn't go away. Took the avocado out - no residual, no constipation! You have now been off Miralax for almost two weeks with no problems!

In other bathroom related news, we are slowly working on potty training. You are pretty good about going in the morning, and will tell us now when you need a diaper change. Still working on being on the before-you-go notification!

You had a playdate with Cousin L last week and you weren't too sure what to think. He gets really excited and then really loud pretty quickly and you kept looking at him like "would you just calm down..." You also weren't sure what to think about another kid playing with your toys! You guys did pretty well playing in the vicinity of one another, but didn't really play together until we went outside to play bubbles. He tried really hard to be patient and walk slowly beside you, but it didn't last for very long :)

Anyway, over all things are going fantastically well. They did finally cut down on our nursing hours so by the end of May we will be losing our night nurses. They are gradually decreasing the hours so this is our first weekend without nursing and by the end of the month we will lose Monday - Wednesday nights too. It's great that you're doing so well, but a bit nerve wracking for me to think about not having the constant help. You really don't need it at night though - no more nighttime feeds, no potential aspiration from secretions because of the trach, no need for constant monitoring!

You continue to be an extremely happy baby and love music...or just anything with a beat. This morning you were dancing to the beat as your nurse tapped out the air bubble from your feed. I must say, you do have rhythm.

Hospital Life - April 7

So for a little bit of a reference point read this from April 8, 2015
And this from April 7, 2014

We've been waiting a long time to get the good news we got yesterday - your sleep study results were about the same as the last sleep study; still technically classifies as having mild apnea but not anything they can do but monitor for now. There was still no granulation tissue inside your trach tract; there was a small cyst but nothing that they were concerned about. Your airway has grown enough that "anyone with pediatric experience can intubate her". The stars aligned. The rings of Saturn were visible from Pluto. Everything was signed off on and we were admitted to the PICU for overnight observation with a small size trach. As long as your oxygen level stayed up and you didn't have any extra labor of breathing, the trach would come out.

Well.....What.A.Night.

You apparently don't remember being in the NICU, which is good; but we found out you DO NOT like hospitals. You didn't take a nap yesterday which made you super cranky all day, so I hoped you would sleep really well like at home - we would put you down early and you'd sleep soundly. But at home, it's quiet and dark... It's neither of those things here. So we would sleep for about 45 minutes, your blood pressure cuff would activate and wake you up every hour, you would start fussing which set off your heart rate alarm (which was set ridiculously low) which would make you even more mad. Vicious cycle. I would get you calmed down after about 15 minutes and you would fall asleep until... 

This went on from about 9:00 pm until 3:00 am when I finally convinced your nurse to shut the stupid machine up and take off the blood pressure cuff. Then we got about 90 minutes of sleep before you just decided you were done trying to sleep at all. Around 6:00 I finally caved in and just turned on the iPad with your videos and then laid back down until they came in at about 6:45 and said the ENT was on her way! I had barely finished sending morning update texts and posting when she got here, laid you back, pulled the trach and put a bandage over the stoma. DONE.

You weren't sure what to think about all that.

Your stoma is larger than the ENT expected, so she's a little bit concerned about you sucking part of the bandage in so we have to watch that closely. She doesn't want to sew it up for a couple of months though just in case we need quick access or have to reinsert it. The tract will heal from the inside out so it will start closing up on its own and whatever is still open by the end of summer she will sew up so that you will have time in the fall to learn how to cough stuff out before winter gets here. It seems really odd to already be planning for the winter!

So we get to hang out in the hospital for the rest of the day, one more night of observation (which hopefully will include sleep), and then head home tomorrow. In the meantime, they don't want you taking anything by mouth yet, which makes it super fun when all you have been asking for is your drink. And hopefully they will let us start feeds soon because your tummy is making some loud noises!

Just Waiting...and Walking! - April 2

So we're just waiting. Patiently. Not so patiently but trying to pretend it's patiently.

You slept well during your sleep study; they only had to adjust the sensors twice. You were a little smarty pants when we got there - you started pointing to all the spots on your head where the sensors are supposed to go. Two years old and seven sleep studies later...you know. We won't get the official results until we go in on April 6 for your airway evaluation...which is where the waiting patiently comes in.

This isn't as much an update as a chance to post something while we wait for Wednesday and to let everyone else know that we don't know anything yet.

Here's some showing off instead -

You can count to 10:

And say your ABCs:

And you finally figured out how to get yourself down on the ground, and then back up again:

Lastly, we got this new toy from your PT yesterday and the first thing you wanted to do this morning was get back in it and GO!

Two years ago... - March 17

Happy St. Patrick's Day! Happy Wear Green Day! Happy Overload of Irish Blessings on Facebook Day!

Two years ago, I had no clue that today was St. Patrick's Day. Wearing green was the last thing on my mind. If someone had pinched me, I would have thought they were helping me realize I wasn't dreaming - YOU WERE COMING HOME!!! After 86 of the longest days of my life, I was bringing my Baby Girl home. You didn't have a lick of green on either.

I was reading back over blog posts from around that time yesterday and have to laugh at myself back then. You have changed SO much (as all kids do in their first two years) and have much such leaps and bounds. You have grown - not by everyone else's growth chart, but you've got your own chart and you're sticking to it.

Top: first set of soft casts to straighten out your thumb; purple helped
with wrists and last helping your fingers curve more naturally.

From your first soft casts to your latest AFOs...you've grown :)

You still aren't a fan of tummy time, but have finally figured out how to roll! And even though you never crawled, you are wearing out your pants and your socks scooting everywhere - either on your backside or on your scooter.

You are no longer confined to the kitchen as you found out that
carpet is not that difficult to get across. You are everywhere now!

Pretty soon though, we'll be walking!

You continue to love books - and have started reading them out loud on occasion.

Reading with Nurse V.

You are such a joy to everyone around you - and I'm pretty sure you've convinced yourself that you are the most funny person on the planet. Your latest fun thing to do is watch yourself on our phones, or watch videos of yourself. This video is hilarious - but watching you watch this video is even better!

There aren't a ton of updates for this post, just a lot of reminiscing. The next three weeks will hopefully go by very quickly, and will be a bit of a flash back as well.

Two weeks after coming home that year, on March 31, you were readmitted to the NICU. One week later, on April 7, we were back in the surgical waiting room as they placed your trach. Three short weeks, but three of the longest weeks. We were just getting adjusted to you being home and then got thrown another curve ball.

Here's the curve ball for this year. Next week, you have a sleep study. Two weeks later, on April 6, you will go in for your airway evaluation. If all goes well, the sleep study results are good and your airway is clear they will admit you to remove the trach the next day. On April 7.

Three short weeks. Three of the longest weeks.