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.

Missing Updates - Feb 17

I know a lot of people have been waiting for this update (sorry) but I wanted to wait until you got through a few appointments to update everything all at once!

Feb 4 you had a check in with the Nutritionist / Dietician. For the first time in who knows how long you had weight GAIN! Not loss, not stalled - significant weight gain. The official change was 9.3kg to 9.7kg (about 0.88lb) which might not seem like a lot, but you've been stuck for the last six months so it really is monumental! We have been weighing at home every morning since the transition to blender diet (BD) started and on our scale you've gone from 20.5 lbs to 22. The best part of the appointment was seeing everyone's faces when you walked into the office in your gait trainer. We also went and visited your friends in the NICU and theywere pretty   thrilled to see that too :)

You have taken the feeding changes like a champ - most of the time there was not even a reaction! When we transitioned to BD you were to receive 135mL every three hours, six times a day. After we made the transition we increased your volume to 170 per feed (which was enough to drop one feed!) by increasing about 5mL every three days. After your weight check we've worked on increasing it even more with the goal of getting you to tolerate up to 200mL so we could drop to three feeds of 200mL and two "snacks" of 100mL. We've been able to increase 5mL each day with no issues! So as of Sunday, you are in a little bit more of a normal schedule - three meals and two snacks. Now we just need to work on the times! 

Over the next few weeks, I plan on substituting out some of the ingredients and start blending by meal instead of one blend for the entire day. The idea is to start using more breakfast-y foods for breakfast (fruit, milk, oats, etc) and then chicken and veggies, or some mix of protein and veggies for lunch and dinner. We'll get there - eventually!

You got your last dose of Synagis (RSV preventative medicine) on Feb 11 and they were pretty impressed to see you walk into their office in the gait trainer as well!

The last update is from the ENT appointment yesterday. We went back and forth with a lot of different options and scenarios and here's where we ended up:

You have a sleep study March 24.

We go in April 6 for a MLB (looks at the inside of your trach and airway)

IF the sleep study results look good enough at that point;

AND IF there is no granulation tissue that needs to be removed;

AND IF the ENT determines that your airway has grown enough that she's comfortable with the anesthesiologist at Shriner intubating you for your foot surgery ---

You will be admitted to the PICU and your trach removed. You will have to stay at least one, possibly two days and nights in the hospital for observation.

Alternatives:

1) If the sleep study still shows to much apnea, she'll still do the MLB because that has to be done once a year and that will be the end of this round.

2) If there is granuloma she'll have to remove it and then give Lexi a bit to recover.

3) If the airway hasn't grown enough for her to be comfortable with the anesthesiologist trying to intubate she will write a letter for us to take with us to Shriner at the end of April encouraging them to schedule the foot surgery soon because that's the only thing standing in the way of taking the trach out.

SO - lot's of variable, lots of could best, lots of hopes and lots of prayers needed...mostly for Mama's patience.

To leave you with a bit of cuteness, watch these videos - we've almost got everyone's names down!

25 Months and Blender Diet Update - Jan 22

I fully intended to do an update after the first week...and last week...and now we're almost through the third week of transition and things have been....AMAZING!

The first week our goal was to test your volume tolerance. We moved all of your feedings (about 800mL in a 24 hour period) to the day. Six feedings per day. Every three hours. 135 mL per feed of formula. Best thing: we got to get rid of the pump and do gravity feeds. No tears were shed over not using the pump. Worst thing: our new feeding schedule started with a lemon water flush at 6:30 am, followed by weigh in and feeding at 7:00, and it ended with your last feeding at 10:00 and a water flush at 10:30. You did amazingly well; your mama was exhausted though. 

Highlights of the week: 

- We quickly discovered you needed to be occupied with playing or watching videos in your stander or you would try to "help" us a little too much;

- You had some allergies issues and spent a few days coughing quite a bit. It didn't take us long to learn to keep our fingers on the clamp...you only coughed your formula back out of the tube and all over me once.

Week two we started switching one formula feed per day for a blended feed. I was ready to go with the first blended feed, got it all mixed up and ready to go...and we clogged your button. Twice. Clogged so much we had to take it out to clear it and re-insert it.

We finally figured out that the blender we have was not going to do well enough at grinding up the bits of chicken or rice so we had to bite the bullet and purchase a Blendtec. We had hoped to put it off a bit while we saved some money and make the Ninja work until we knew for certain the BD was going to be a go for us, but you can't do a job properly without the right tools. Thankfully, I was able to find a good deal on Amazon with next day Prime delivery!

So day 1 felt like a failure, but we were able to get one blend without chicken and rice into your system. The Blendtec came in the next day after we had done your two feeds (sans chicken and rice again), but with enough time for me to mix for day 3. WOW - what a difference!

We celebrated Saturday when you got your LAST FORMULA FEED!!!! You weren't too sure why we were wanting to take a picture of you, and didn't seem nearly as excited about it as we were :)

We launched straight into week three trying to get the calorie count up in your feed without making the volume increase too much and finally got that figured out. We also worked on slowly increasing the volume that you could tolerate until we could drop the 10:00 pm feed. So for the next two weeks we'll stay where we're at with 170mL per feeding, 5 times a day. We go back on Feb 4 for a weight check and to visit with the nutritionist so things will be fairly stable until then.

Getting into a new system requires a lot of trial and error, but hopefully we're out of that phase for now. It also means that Mama goes insane until she gets the system down. Our system right now includes about an hour of prep work every Saturday (in addition to the usual snack prep for sisters' lunches and meal prep for family dinners) to get all of your chicken, tofu, veggies and fruits cooked, blended down, portioned out in the correct amounts and into the freezer. I make your blend once a day, then pull out the frozen stuff for the next day so that it has time to thaw before making tomorrow's blend. I also have to blend a double batch on Saturday's since we're gotten back into the schedule of staying at Grammie's house all day on Sunday between morning and evening worship services. I think we've got it all figured out and will just spend the next couple of weeks polishing the system.

Jars labeled and ready for eating

It's not the most appetizing color, but it works!

Tofu, Chicken, and Blueberries/Peas/Spinach in the freezer

In other news this month:

You are working on pulling up on EVERYTHING! We installed a grab bar in the living room / kitchen so you can eventually learn how to get on and off of your scooter by yourself - so far you just like pulling up on it. We've had to be really careful about watching when you're on your scooter because you try to pull up on the chairs, which aren't too stable, and almost pulled it over on top of yourself the other day!

Grab bar in entry way

You got yourself stuck in the pantry because you pulled up on the shelf but didn't know how to sit back down!

We also let a few things go this month - one being cloth diapers, the other being your high chair! You love sitting in the big chairs like sisters so I figured it was time to bring back out the booster seat and you LOVE it! You scoot up to it a lot and say "Lexi's" - I guess just making sure that we all know who gets to sit there :)

I asked you to smile and you started making monkey noises...

You've also taken a LOT more interest in standing up and walking - which means we've got to get that foot surgery on the books as soon as they'll let us because you are NOT going to wait for them!

One of our PT goals is to start working on going up the stairs. Generally you can make it about two stairs before you give up and want to turn around and go back. To be fair though, there are a lot of them, and it takes way longer to go up than down!

The last big update is that we've started working on potty training! After showing off some of your new tricks to the PT, she asked if we were potty training yet because your smart and would probably pick it up pretty quickly! We said we had a potty chair but hadn't really pushed it yet because we don't want to frustrate you if you can't get to the chair by yourself or we can't get you unhooked, unbuckled, and onto the chair in time. So we've started putting you on it right after you get up from your nap and first thing in the morning, and you've gone every time! The next step is learning the sign for potty and how to say potty so you can hopefully let us know when you have to go! You've woken up from your nap and sleeping dry the last couple of days so hopefully you're learning how to hold it until you're on the chair.

I'll leave you with this little ray of sunshine - you've found your favorite song on this toy and know exactly which button to push to make it come on!