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!
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.
Things have been SO crazy since sisters came home but you have absolutely loved the attention you've gotten from them. You definitely missed them when they were gone!
Your attitude has continued to...evolve (I'll use that word instead of others Icould choose...) You have good days and bad days. When it's a good day you love everyone and pass out hugs and kisses like they're pennies. But on your bad days (like today) you latch on to grudges of any perceived slight (like someone asking if you're hungry or want to play) and those smiles and kisses become more like diamonds.
Your love of anything crunchy has popped out over the last week or so and I'm pretty sure you've devoured a box of cheerios all on your own! You have gotten back into eating more of your vegetables and Mama finally remembered to get some more sweet potatoes and a butternut squash. Yesterday, you wouldn't eat anything (teething) but I handed you a chunk of sweet potato and you went to town! You are definitely in the phase where you want whatever is on Mama's plate (even if it's the exact same thing as your plate) and have started helping yourself to whatever you see.
Chicken Express roll anyone? I missed the shot of her grabbing the drumstick...
You have added three more signs to your list: bubbles, drink/water and yes. You aren't able to do them exactly correct because of your limitations, but you've done them consistently enough that we know what they mean. You've also added the bababababa and papapapapa sounds to your rambling so when you talk it sounds like mamamamamabanapapapapababamamamama. Apparently, whatever that means is REALLY important though because you always have a super serious face when you say it!
You have really enjoyed playing ball this month - especially with Little Big:
You recently discovered our rocking chair and had a blast in it - you've sat in it before with Mama but this time it was apparently WAY more fun!
Another super fun activity we've been enjoying is bike riding! We finally found a baby seat that wasn't a million dollars and you have gone riding with Mama a few times. You were really hesitant about the helmet at first, especially after I buckled it under your chin, but the ride made it worth it!
Bath time is still your favorite, but now you do a lot more playing with your toys than just splashing. You like lining up your duckies on the edge and have figured out how to put the bowl on your head all by yourself! Yay for arm range of motion :)
We got new AFOs (boots) today, as well as shoes for when you're standing to help encourage you to bear weight more. They also made some braces for you to wear when you sleep to help straighten out your legs / knees more. It was a long trip, and you were tired, cranky and teething, but we survived! The doctor said it might take you a few nights of getting used to the braces before you made it all the way through the night, but you are currently snoozing away without a care in the world about having something strapped to the back of your legs.
Keep growing and shining and loving people Silly Girl :)
I held off on this post so that I could include the update after your Shriner appointment...at least that's the excuse I'm going to use!
You have grown so much this month - every day you look more and more like a little girl and less and less like my little baby :(
Your hip joints are stretching out really nicely - nice enough for you to finally be able to get your toes into your mouth! You take every opportunity to try to bite your own toes, but have also figured out that it works better when you're laying down than sitting up. Gravity has taken over a couple of times now - including this morning in the Shriner lobby...their industrial carpet isn't quite as soft as our living room carpet is so you've got a nice red spot on your head now :(
You're also flexible enough to almost lay flat on the ground when you pitch your fits...
(In this one you weren't pitching a fit as much as trying to get away from Grandpa, but you do the same thing before a fit starts)
We got some letters, numbers and shapes for you to use with your flannel board and you love taking them on and off! I'm hoping to start working on learning colors and shapes pretty soon - you pick up on things so quickly I don't think it will take long!
You continue to love reading books and singing songs. Your favorites right now are "My God is So Big" "5 Little Monkeys" and "The Wheels on the Bus". We read a few books (or the same book a few times) each night and you usually end up taking a book with you to bed to keep looking at.
You love asking "what/where" with people and things - anytime someone walks out of the room (or you throw something off your table or from your chair) you hold your hands up like you're asking "where did they go?" Or "what happened?"
You have really started to enjoy brushing your hair and teeth each night. Your hair is long enough that we have to fix it every day (which you are NOT a fan of) or I have to cut it...and we're not going there yet!!! Your back molars have started coming in so we've had a couple of days of crankiness the last week or so. That is, a few days of crankiness on top of the extreme srubborn streak that has made its appearance this month :)
You continue to love the water and have really enjoyed the few times you've gotten to go "swimming" this summer. Bath time is your favorite and you will often ask for a bath any time we walk past the bathroom.
No new signs this month, but you're saying Mamamamamama all the time now and we've gotten a few rounds of bababababa also! Your facial expressions continue to impress everyone - we can tell exactly what you're thinking or what you want just from your expressions! You've started giving "real" kisses this month, as opposed to just blowing kisses at people, and using your arms to give hugs, instead of just leaning your head toward the person you're hugging. You've also gotten a lot more cuddly, which I absolutely love :)
Bible Class is one of your favorite times of the week now - you are usually really excited on Sunday mornings and chatter excitedly all the way to the church building. You've started interacting with the teacher, and sometimes the other kids, more and more over the last couple of weeks.
Your appointment at Shriner went MUCH more quickly than last time! They fitted you for some new AFOs (ankle and foot orthotics - aka: your boots) and are glad to see that the last ones have stretched your foot downward (plantar flexion) really quickly. They will be adding a plastic piece to the front of your new ones to give them an even deeper stretch when you've got them on to push the progress along. The doctor also ordered a pair of shoes that will allow you stand as flat footed as possible (the sole will be wedged since you're mostly standing on your toes) to help encourage you to put more weight on your heels and start pushing through your legs to your heels more. Other than that, the lower extremities are moving along and doing really well. They were glad to hear you're doing so well in the stander and that we're in the process of getting the gait trainer. Hopefully the shoes will help make rapid progress on that!
The other doctor said your upper extremities look beautiful! She was so impressed watching you improvise and "make do" as you were manipulating the blocks and toys they had. She was thrilled that you have already figured out how to work around your fingers not extending all the way. She said they are the opposite of the lower extemities - they're not as concerned with positioning, bracing, etc. because it's more important for you to discover, explore and learn for yourself to help develop your fine motor skills.
The next steps with Shriner will continuing the AFO work on your feet until we are ready to look into the surgery to correct your vertical talus. Unfortunately, they're wanting to wait until your "pulminary issues" are cleared up before they look at any surgeries. In other words, your sleep study in September needs to go REALLY well so we can make steps toward getting your trach out before they'll look at foot surgery =/
Overall, really good appointment - we'll go back in late November and continue making progress! You did really well in the car also, but were WORN OUT by the time we got home!
You're doing so well and continuing to impress us all! Love you Baby Girl!
As predicted, the orthopedic appointment last Thursday (the 9th) was completely uneventful. He said he didn't need to see us back until Shriner decided to do something, then he would be more than happy to take over any follow-ups/ post-surgical appointments needed so that we don't gave to drive back to Houston every time. Our next appointment with Shriner is the 27th so we'll go from there!
Your new favorite game has become Toe Grab...which is fine for everyone except Mama who can't stand to have her feet touched. So you try for stealth; waiting until I'm distracted and scooching over to try to grab them. This is usually the look on your face when you get caught:
Speaking of scooting, you are ALL over the place these days! You've discovered the CD and DVD shelves and love pulling those off. The other day we put you in the middle of the living room, you made your way to the shelves and pulled all of those off, worked you way to the back door to play with the blinds and a tub of balls, headed for the front door to get those blinds and then back to the living room to play with your blocks! It was pretty entertaining to watch!
You have thrown a few full blown fits over the last few weeks - one of them lasting almost 10 minutes because I didn't pick you up quickly enough. As entertaining as you are pitching a fit, we've had to learn to not laugh as you try your best to turn away or scoot away from us! You actually have a pose that you go into when we tell you to do something you don't want to - after you glare at us and turn your back you do this:
It's like you're physically "digging in" and not going to give up and do what we ask!
Here's another fit you were pitching - you didn't want to change into your shorts so we could go outside, so you refused to give me the shorts back...
In more exciting news, we had a family reunion last weekend (part of the reason for this delayed post) and got to see sisters!!! You were SO excited when they got home Friday!!! You did really well with all of the "new" people that you don't remember meeting last year.
Giving Papa kisses
Breakfast with Granny - you helped yourself to her toast
Boxes are the best!
Swimming!!!
Playing with cousins :)
We've been working on a couple of Bible Class songs and this one is your favorite so far - you just started doing some of the hand motions in the last two days and I'm so glad you let me record it because it's too cute not to share!
In other cute, exciting video news, watch this and try not to grin - ignore the video angle, I was being sneaky so you wouldn't see the phone...it's a bit slow to start with, but keep watching:
We had a crazy busy week after we got back from EYL Camp! In addition to getting everyone home, laundry done and sister's repacked for church camp, we also had to get ready for Big Sisters to be gone for a month to their mother's house. Our house has been way too quiet and every time we go up or down the stairs you look into their rooms and then ask "Where are they?"
You've also been COMPLETELY obsessed with babies - you've played with your baby doll every day and when we go out you are constantly pointing at babies and signing "baby" and then smiling REALLY big. You had a great time playing with your third cousin (I think that's what she is anyway...) on the 4th of July...until she tried to take your water cup :)
On Monday when we got back we had another trip to the ENT to get your trach upsized back to a 4.0. You've had some trouble adjusting to that - you won't tolerate your cap anymore because there isn't enough room to breathe around the trach; you are ok with your speaking valve for short amounts of time - but not if you're coughing or eating; you've had some blood in your secretions because it's so tight it's irritating the inside of your stoma. Other than that. you've readjusted to being back on the vent at night and we've finally gotten a good setting with the humidity that isn't causing you to drown in your secretions at night! The first few days were pretty rough nights :( We've got another sleep study scheduled for September 10 so hopefully we'll get everything figured out by then and can get some results that don't completely baffle everyone that looks at them.
Here are a few videos to get us through the rest of the week since the only thing to update on this Thursday will be a trip to the orthopedic specialist which should't have anything out of the ordinary to report...
You have become quite the little giggler - which is awesome to hear after having to work so hard to get it out of you!
You also got your first experience with swimming on July 4th - you weren't sure about the water at first but once you started splashing you were good to go! Today, every time you passed by the bathroom you would point and ask for a bath so we finally stuck you in a plastic tub of water in the kitchen to play - and you loved it! You played for about 30 minutes each time and were not ready to get out!
You were getting a little brave in the tub and tried standing -
Keep growing and loving and giving hugs and kisses and being you :)
First off, how is it possible you're already 18 months old?!?!?! I feel like I start all of your monthly updates with that statement, but each month it is even more true - where does the time go???
I've been putting off writing this post 1) because I'm in denial that you're actually 18 months old and 2) because sharing the test results from the last couple of days makes them even more real and I'm still not ready to acknowledge that. So here we go...
Your sleep study results were not good. And they weren't bad. They were "really awful" as the pulminologist said. She felt a little better after we had explained that you had been sick for a couple weeks with allergies / a cold (no one will agree what to call it but anytime a storm comes through you start coughing, sneezing, congestion sets in, etc. and you got suck right after Memorial Day....) and that you were still super congested. BUT, she said that even if we repeated the study while you were feeling perfectly fine and you got great results, knowing that a simple cold gave you such awful results, she wasn't comfortable with the trach coming out yet.
Her recommendation was for you to move back up to a size 4.0 trach so that you could go back on the vent at night. Needless to say, I was extremely disappointed. And I cried. On and off for most of the afternoon. The pulminologist is going to visit with the geneticist to see if there is any research linking sleep issues with Escobar Syndrome, but since there is so VERY little information about Escobar to start with I'm not anticipating that being very helpful. The main problem is that they still aren't sure what is causing the apnea events to occur, so they don't know how best to go about fixing it. So the trach stays.
We got back home and I had to go dust off the ventilator and hook it back up. You kept looking at me and the machine like "why is that on!?".
Friday morning when I got you out of bed I noticed that your trach wasn't sitting quite right. It was off to the side from the vent pulling on it, but it had also come out about 1/8 of an inch...and wouldn't go back in. So I pulles it out to try to put a new one in - wouldn't go. So I tried a smaller one. Nope. So we loaded up early and headed to the ENT office.
First thing she said: So Lexi didn't agree with the test results, huh?
It took a little while, but she was able to get a 3.0 in, and then a 3.5 (which is what you'e had in). We'll go back next Monday to upsize you to the 4.0 - she didn't want to push any further with upsizing you that day. Needless to say, that's not how I planned on starting the day - but just like last August, you didn't seem one bit bothered by the fact that your trach was out. Sigh.
We finally got things calmed down from that appointment in time to get you a quick nap and then heas to your pediatrician's office for that appointment. The pulminologist wanted us to visit with her about some of the medications and doses you were on. That appointment led us to a clinic to get blood drawn for allergy testing. Hopefully this will help solve the you have allergies vs not old enough to have allergies debate so we can get what you need to get rid of the allergies/non-allergies.
Whew!
So it has taken me four days to write this post because we left Saturday for EYLCamp and have only had about 5 minutes at a time to write little snippets at a time. You've done so good so far at camp this week - you've mostly been pretty happy with all of the new people and loud noises so far. You have a new friend that you have been SO SWEET playing with! You have started signing "baby" every time she gets brought into the room and reaching for her because you want to hug her or play with her.
You've also gotten to play a lot with Nanny and have just about mastered your shape sorter without even looking at the blocks. You've also learned the hand motions to all of The Wheels on the Bus - but you refuse to do most of them for anyone but Nanny. You have shown off most of your other skills depending on how many people are in the room :)
On the 18 month update side of things: You've learned a couple more signs this month (baby and help) and can now point out your mouth (separate from teeth and tongue), knees and we're working on elbows. You've also started pointing to things on other people too and learning the difference between "your" or "Lexi's" eyes/nose/ears and "Mama's" or "my" eyes/nose/ears. You've also started really clinging to Daddy a lot more and absolutely LOVED your shirt for Father's Day - anytime you saw me or Little Big you got SUPER excited and started signing DADDY!!! When you first saw your shirt you grabbed it and gave it a HUGE hug :)
You are doing so well Baby Girl - we'll keep doing things on your time and Mama will starting working on that patience and expectations thing again.
