April and May 2017 - Getting Caught Up

April was a pretty calm month - not a lot to report on! You had a fun time going with Patches to his training classes and got pretty good at telling him to sit. So good in fact, that your teach told us you started telling the other students "No. Sit." very forcefully and commanding-ly (??) when they would try to stand up during circle time. Proud parenting moments. In particular, you have enjoyed the fact that the classes take place in the park where there are slides and swings!

We did have an appointment with the Pulminologist and while she isn't ready to discharge you quite yet, she did move you to an every 12-month appointment. Between 5 and 6 years old she wants to do some lung function tests and continue monitoring those results to give us a better idea of what to expect as you continue growing.

May has been a whirlwind; I can hardly believe we're already at the end of the school year! Your speech therapy has been decreased to once a week because your feeding issues have significantly improved! Now their primary focus is clearing up some articulation issues and working on conversational speaking.

Biggest news from May is that we scheduled your first foot surgery - we will start casting on June 5 and have your surgery on July 19. While I am not looking forward to you having to be off your feet for 12 weeks, and in a cast all summer when you are just starting to fall in love with the water, I am excited for this procedure to be taken care of. It should be the last major procedure until you are between 7 and 10. I am also thankful that our PT encouraged us to go ahead and get the power chair process taken care of so that you are already used to driving your chair around. It will be interesting to start transporting that with us all summer long!

We are working on reducing your tube feeds - your oral intake has shot up in the last few months and you started telling me "no green food" more often because your tummy was too full for anything else. I've been playing around with your blend and have figured out a few options (one for on the road and one for at home) to get the same amount of calories into you, but at a lower volume so you can still eat. There are days when I feel like that's all you do - your food list has expanded greatly: cheerios, fruit loops, pretzels, crackers, chips, chicken, french fries, broccoli, carrots, corn, apples and peanut butter, bananas, potatoes, sweet potatoes and (most importantly) SOMEGHETTI! You will eat and eat and eat if we have spaghetti.

We had some fun last week with a photo shoot we've been wanting to do since Christmas but just now made the time for - you and your babies in your Frozen outfits and matching boots! I am so so so thrilled with the way the shots turned out, and to start working with your Loftstrand Crutches! I don't know that we'll get them figured out before casting starts and you're off your feet for three months but you've had fun trying the last few days!

I think that's all for now - my brain is a little fried with end-of-school activities and appointments and schedules so I'm sure I forgot something! June and July will be busy, exciting, different and anxiety-inducing (at least for me) so I'm sure there will be a lot to report on then!

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!

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.