July 2017 - and a little bit of June and August

As usual, July has flown by!

We wrapped up June at EYL Camp and you had such a great time playing with your "new friend Lane" (as you still call him). We also used that week leading up to AMC Awareness Day as a challenge week - each day we had different staff and volunteers participate in a challeneg related to your limitations with AMC. Once again, our EYL Family stepped up to the plate and were SO supportive of helping us out. Mr. Brent even made the camp shirts blue this year so that the group photo on June 30 could also serve as a #BlueforAMC photo!

Challenge #1: Say "Arthrogryposis Multiplex Congenita" three times as fast as you can

Challenge #2: Write "Arthrogryposis" without using your hands

Challenge #3: Go up and down the stairs without using your legs

Thank you to everyone who sent us a picture of your blue shirts / outfits to support AMC Awareness Day on June 30!

We had a little down time at the beginning of July so we stepped up our timetable and got our living room floor taken care of! It has been a huge plus to have smoother floors now that you're double casted and can't use your scooter - makes it easier for you to stay on the move!

Grandpa had a little pry bar for you to help!

Not a huge fan of the noise from the saw :)

We went to watch fireworks with Aunt C and the boys - you were NOT a fan of how loud they were...but eventually decided they were too pretty to not watch them.

Excuse the blue teeth - sugar cookie frosting :)

And then we had the big event of July: your first foot surgery! They had originally told us it would be a 2(ish) hour surgery; just when we were getting to the two hour mark and I was getting stuff ready to wait for the "all done" call, they called and said they needed another 1.5-2 hours!! Yikes!! But when Dr. B came in afterward he was very excited about the positioning he was able to get with your bones and the end result so I guess the extra time was worth it :)

Pre-Op meds made you super silly and sleepy!

Finally got to get out of bed... that's what you chose for breakfast (Fritos)

We were in the hospital overnight, went home the next day, spent some time with sisters, and have just been hanging out...NOT standing up... at least trying to remind you not to stand on it. If too much weight is put on the foot it can cause the pins to slip and the bones to shift enough that he woukd have to re-do the surgery. You've spent a lot of time reading books, playing babies and watching movies; especially the first few days when you were getting used to having two casts on!

Tuesday (Aug 1) we went back for your first cast change in the left foot and he said everything looked good for both feet. Second surgery will be sometime in the later part of September, which is later than we thought but glad it's not the first week of school!

Wednesday (Aug 2) you had your developmental check-up. He wants to continue following you (still) just so we have someone we can call on when it's time to start kindergarten if we get any push back about you being in regular ed classes instead of special ed (not that we're anticipating any) and to help write letters for any accommodations you might need - we're still not sure what adaptive / assistive technology or modifications you might need. He wants to see you back in February instead of another 12 months because they will be able to do an official cognitive exam - those are tailored for 4 years and above and even though you are still testing a 4+ year old level they can't administer the test yet.

That's about it for this round! 

March 2017

So since it's a third of the way through April and I'm just now getting around to the March updates, we're just going to pretend like the February one already happened... don't worry there weren't any major updates, which is why I never felt the need to write it. March however had some big things!

In February, we had to switch speech therapists. The ST that has been with us since you came home (the first time!) switched agencies and weren't able to move over with her. Your new ST has been amazing though and after a couple sessions of testing the waters with her, you spent most of March showing off everything that you know! Unfortunately, that means you are racing through all your goals and she has already started warning me that our sessions will probably get cut at the end of the month. 

You got to have your first capitol day in March also! We met up with a bunch of other families to meet with legislators about the cuts in therapy funding and the switch from Medicaid to STARKids, which has been fairly disastrous across the state. It was quite the experience - much different than other advocacy days that I've taken part in...mostly because I've never had to navigate the building with a stroller before! More details about that day can be found here.

We had a great time over Spring Break! We spent the first few days with Nanny and Grandpa fishing, driving the tractor, playing hide and seek through unfinished walls and burning marshmallows every evening.

The next week we had an appointment with your ENT and you were discharged!!! She said unless we started having any issues, that there was no reason for her to see you anymore! Dr. B has been absolutely amazing and I am so glad she was on your team, and although it's weird to think we won't be seeing her anymore, it's a phenomenal feeling to know that you are doing so well that we get to start dropping specialists! Maybe we'll have similar news with your pulmonary appointment later this month.

You had an absolute last at Cousin L5's birthday party and have already started talking about when we go back to Chuck E. Cheese "in December for Lexi's birthday"... I love watching you and L5 play together - you got to spend a couple hours at their house one Saturday when I had to take Patches to his obedience class and spent the next several days telling me stories about it and how it was "so much fun!"

Last big update: you had an appointment at Shriners at the end of the month and they were so thrilled with your progress that we are ready to move forward with your vertical talus surgery! It's quite a process so we don't have dates yet - they said they are estimating 2-2.5 hours for surgery on each foot so they want to do them one at a time. Each foot has to be cast for 6 weeks before (changing the cast every 2 weeks) so we're looking at a 12 week process. During that time you are not allowed ANY weight bearing so I am especially thankful we have the power chair now!

If you want more medical details about the surgery here's a good site; simply put, both of your talus bones are not laying the way they should be. The casting will help make the foot as flexible as possible by pulling your foot down (think of a ballerina pointing her toes down) which is why you will be recast every two weeks - a little more stretch each time. They will then go in and put the bones in place. After the surgery you will actually have less mobility and flexibility in your foot, but the structure and stability will be what it needs to be for walking.

What we're waiting on now is for them to look at the surgery schedule for the second foot, back up six weeks for casting and make sure that aligns with the first surgery and then back up six more weeks for casting. Should know more specifics in the next 2-3 weeks (they told me to give them 4-6 weeks; but if I haven't heard after 4 weeks to call and check in...) but once the process starts we'll have a total of 8 trips to Houston and back, with 4-5 days there for each surgery...should be fun to try to schedule

We wrapped up the month with the PTA carnival at school where you had a blast. Unfortunately, you have decided now that you are "a big girl now because I played with the big kids at my school." 

Those are the major updates - now for the cute stuff: 

Ignore the hair - we've been working on the books of the Bible. This was actually in mid-February; now you can make it all the way to Ecclesiastes without any prompting!

Another big highlight in March - you VERY QUICKLY picked up on riding your bike!

Last bit of adorable: we've been working on training with Patches and you are determined to not be left out in having someone to boss around!

January 2017

So I really did intend to get caught up on everything in January - it just didn't happen. So instead, I'm adding it to my "beginning of the month" list to at least post monthly.

So January big events:

Starting school!! We had a rough first week of whining every day and crying, but starting week two you have LOVED going! I get a full report of who was there and who was absent, what songs you sang in music, what games you played in PE (even what color the ball you played with was). You have "learned my ABCs again" about five times now. You even helped the teacher teach all of the numbers to the rest of the class.

You got new AFOs (boots) and HKFOs (full leg braces) and it has made a HUGE difference in you wanting to walk. The old ones had gotten small enough that they were hurting your feet too badly to spend more than 20-30 minutes in them. NOW - you are getting to the point that you are walking without the boots on at all! Our next goal will be work on your endurance (right now you can barely make it across the living room) and building up your leg muscles.

Probably the biggest moment of January though, was getting your power chair! We finally got the call that it was ready for a final fitting; we spent about an hour one day getting it all set up and ready to go! You have done really well learning how to use it and drive straight. We got a ramp installed at our front door, a lift for the back of the car and are ready to go! When we first started the approval process for the power chair, you had not started walking yet and we were planning on this being your method of movement at school; now however, everyone agrees - YOU DON'T NEED IT! At least not at school - you are doing so well walking and we definitely want that to continue! But we now have the chair for longer excursions (like if we wanted to go to the zoo or were going out of town and would be doing a lot of walking) and are very thankful we have that option to fall back on so that you can maintain your independence.

Other fun moments this month:

"Mama I eated my sagetti...I washa hands now!!"

Everything has become a seat...

Mimi found a toy that (almost) all of the Ls got into - Lincoln Logs!!

And here are a few more songs that you've been singing lately:

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!

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!