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!

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!

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!

2.3. Months - November 21

I out off writing this all day yesterday. Not forgot. Put.it.off. We had an appointment first thing in the morning and I dated something 11/19 and they corrected me...so I was well aware. But that meant that I only have 30 days left of NOT having a two year old.

This month we have had our ups and downs; you have made progress in some areas and regressed in others; we've good appointments and just ok appointments.

Here are some things we learned / relearned about you this month:

You. Are. Stubborn. Ok, so we knew this. And we relearn it on a daily basis. But this month, others got to start learning it. We've been trying to convince your PT for a while now that there are days when we don't get any exercises done with you, not because we don't try but because you don't want to. Period. And if you don't want to, it's not happening. We've been trying to get you to use your gait trainer on the carpet (which you do better at now, but at first...) and your PT told us to just put you in it and let you face the wall. Eventually you would get tired of looking at the wall and push backward. Ten minutes later....you were still staring at the wall and she gave up. Lexi -1; PT -0.

We also learned that you are stronger that super glue. And Gorilla Glue. You have to have a strap across the toe of your AFOs (ankle-foot orthotics...aka your boots) because your toes don't lay flat. But the way they make them leaves room for fitting when we pick them up so they can't bracket that strap down until they know where your toes lay so they use an adhesive velcro. Last set of AFOs you totally destroyed the toe strap. Pulled them completely off AND the part of the velcro stuck to the boot. This round, they used their strongest adhesive. Those lasted about 5 weeks. So I super glued it back on. It was off 2 weeks later. So I tried Gorilla Glue. That lasted a little longer...but 3 weeks later it's gone. Sigh.

You LOVE race cars! We had a chance to go to a slot car racing shop with one of my cousins earlier this month and you absolutely loved watching the cars go! They also had a derby car track and some matchbox cars and you had more fun getting the cars and letting them go down the track than anything I've seen in a long time!

You will not give up once you want something. Maybe that fits in with stubborn, but I'd call it more determined. When you are on your scooter in the kitchen and someone is in your way, you've started pulling at legs or pushing them out of the way so you can get where you want to go. If you want the pantry door shut, it doesn't matter if someone is in there or not...it's getting shut. If you want to go down the stairs you will sit at the gate and bang on it and yell until someone comes to help you. If a door is closed and you want it open, you sit there and knock. And knock. And knock. And then start with the Mamamamamamamamamama until it gets opened. We're working on that one.

New words for you this month: up! Da-ddy (much more clear -dy sound at the end); I di (which means either I do, I did, or I am depending on the context); da (yes); and you've been working really hard on saying "Donna" (speech therapist - who is just thrilled) and Nanny. You do really well at imitating and will at least get the right number of syllables in the word your copying.

You absolutely love being on your scooter in the kitchen. It gives you complete freedom to be a mischievous almost two year old. I have found bowls in cabinets they don't belong; I've found your new truck on the bottom shelf of the pantry where you traded it for the bag of chips. And you love helping with the dishwasher, but are not too happy with me when I don't let you play with the dirty dishes. You are so fast on the scooter it scares me sometimes! Your latest trick is to sit and spin in circles...

Lastly, you are making such good progress with your PT! You don't yell and scream (mostly) anymore and are so thrilled when you figure something out. You are soon close to being able to walk without anyone helping you when you're holding on to the couch. You've got the standing part down - and actually ask to be put in your stander now. You spend about 30-45 minutes in your gait trainer and 3ish minutes in your stander every day.

And here's a video just for fun: we were playing fetch with your puppy!

Keep growing Baby Girl - but not too fast :)

Test Results, Costumes, and Tantrums - Nov 5

Being two years old must be much harder than any of us remember... at least that's what you need us to think right now to justify the amount of attitude and tantrums that you have been having lately. Fortunately, they are short lived and just include you screaming (for about two seconds) and crossing your arms. Usually in response to someone asking you to put your toys up or if you want to get in your stander. At this point it's still comical, but you have had a few that require you to be put in time out. You weren't a fan of that.

We got the sleep study results back from the October 14 sleep study last week, but I haven't had an opportunity to write about them yet. Bottom line: you didn't do as well as they hoped, but it wasn't awful. You had a significant enough increase in apnea episodes with your trach capped (completely blocked off) that they are concerned, but not enough that they think you need to be back on the vent at night. So, good news and bad news. You will go back to using an HME at night (a filter that allows you to breathe through your trach and provided moisture) so that you have some extra breathing room; this has proven to be a bit of a challenge because you aren't used to all of the extra moisture and haven't adjusted to that yet. The extra moisture causes secretions to increase, which means you have to be suctioned more, which also increases secretions because it irritates your airway (vicious cycle). So far, you've only had to be suctioned once because you've been able to cough and clear all of the secretions.

Right now, we've got a bronchoscope scheduled for February 16 to take an internal look and make sure there is no extra tissue growing or anything blocking your airway; the next sleep study is scheduled for March 24. My job between now and then is to get the pulminologist (who thinks the apnea is caused by your anatomical structure - which isn't likely to change between now and March) and the ENT (who says there is nothing we should be doing between now and then) to agree on SOMETHING we can do or try, otherwise the results in March will not be any different and we'll be right back in the same boat and delaying decannulation even longer. Quite a task for Mama to take on.

In other news, you were the cutest little Dorothy ever (I say that with 100% bias because I know of at least four other little girls we know who were Dorothy and I'm sure their parents said the same thing to them) and you had such a great time at the Fall Festival this year! You even let Big Big's friends take you and play with you some so Mama got a chance to take a break :)

You also had a great time watching all the kids come up to our house to get treats - although some of the costumes you were a little unsure about... You wanted some of the toys we were passing out and seemed particularly enthralled by the finger lights and glow sticks!

Last thing, we pulled out this old toy to give back to the PT who brought it to us so she could pass it along to another patient and you have played with it non-stop since we got it out! Guess we need to start doing that with some of your other toys so that they can be "new" again too :)

"Official" Test Results - Sept 19

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

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

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

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

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

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

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

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

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

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

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

Lots of Happy Things Here - Sept 14

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

One Year Pictures - January 26

Aunt C did a fantastic job getting some one year pictures of you over the Christmas break that I haven't shared yet!