This isn't the typical update post, but it's been something I've wanted to write about for awhile now and fits in perfectly with the season of Thanksgiving.
I saw this meme about a month ago and had to laugh:
I think most of us have both happy and painful memories of these things in PE class, but all of those have been erased by my new memories of this wonderful, magical, flying carpet device... Memories of your freedom. Your exploring. Your helping. Your growing!
When your PT first brought this to our house, you were VERY unsure about it. Your balance was pretty good sitting still, but not so much moving. You fell off a few times trying to figure out how to make it move and were done with it. You were ok putting stuff on it and banging it on the floor, but would scream if we tried to put you on it. We didn't push it and it sat in the corner of the kitchen gathering dust.
Fast forward six months: you've figured out how to scoot around on your bottom and love the freedom you have to roam around and try your best to get into things; we finally had to baby proof the house at 18 months.
One day we decided to try the scooter again - and you flew! You got your little feet going and were gone. You learned how to turn the whole thing instead of just your body so you've only fallen off once or twice - usually because you got your feet moving too fast for the scooter to keep up!
You learned how to open cabinet doors so now I get these greetings when I'm cooking:
You like helping unload the dishwasher (but don't understand why I won't let you play with the dirty dishes):
You have a new trick where you just sit and spin in circles - but not when you know you're being filmed. You also like to scoot laps around the table.
Most importantly, it gives you just enough height to reach the bottom shelf of the pantry where all of your snacks are now stored - talk about freedom!
What once terrified you beyond belief has turned into your favorite thing ever and has given you the freedom and mobility we've been dreaming of when it became clear that you would never crawl (too much pressure on your shoulder joints) and walking was still quite a way into the future. It's the first thing you ask for once we get downstairs and usually what we are picking you up off of when it's time to get ready for bed.
We were hoping for crawling and you learned how to fly!
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!
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 :)
So this is a catch up on the last 16 days since my last post PLUS (thanks for the reminder Nanny!) today is in fact the 20th which means you are officially 22 months old. Sigh.
This will be a bit of a boring post because I can't attach photos or videos from my phone and my laptop is currently at the Apple repair center so I'll have to come back and add some later. Here we go:
The good: you have done FANTASTIC off the vent at night this month. You have only had a handful of desats (when your oxygen level drops below 90%) and it didn't take you any longer than it would have taken a "normal" kid to get over your cold before the sleep study. You were down for about 3 days and then another two before you were really 100% again. You are now so much more talkative than ever! You will say Mama and Dada now (although if we ask you to say this one you still say uh-uh...insert video here later!); Big Big's name (and will scream in excitement when we ask where Little Big is); you have gotten really good at P sounds and will start saying pu-pu-pu when you hear a puppy. We don't have it on video yet, but we have two witnesses to you saying bubble and bye-bye! You pretty much chat and jabber all day long now. It's awesome.
You are eating EVERYTHING lately! And lots of it! We had a bit of a set back when we had to switch to dairy free, but you took it like a champ. You've had no trouble adjusting to the formula, love some of the new snacks I found and didn't decrease your oral intake whatsoever. You're doing super awesome drinking out of your cup (usually 6-10 oz a day!) and have even started drinking a little bit of juice every now and then! At least once a day though, you still ask for goldfish :(
Chicken nuggets and french fries are your FAVORITE right now!
You absolutely love your gait trainer and spend almost an hour every day in it. We've started working on using it on the carpet, which you're not a fan of, but you tolerate it. Your legs are continuing to straighten out; they will be so thrilled in November when we go back to Shriner because we've had to adjust your leg braces twice already to accommodate the change. We've also had to adjust your stander two more times to make it taller!
You really love taking it outside so you can see the neighbors' puppies
The Bad: you will definitely have your trach in until the spring. We found out at your last ENT appointment that the pulminologist should not have been the one to downsize your trach...whoops. And that it should have only happened after we did another internal look...whoops. And that this last sleep study will not factor into the trach removal...boo. It will, however, determine whether you get to stay off the vent - it is a pulminology check sleep study to make sure your lungs are keeping up off the vent. She agrees that it should stay in through the winter just in case you have any respiratory issues - we know we have an access point for anything we need. So the tentative plan for now is to schedule an internal look in February, followed by another sleep study to check for any airway / other ENT related issues; based on those results, look at scheduling the removal in March. The other factor in all of this is your foot surgery. We have to talk to the doctors at Shriner again and get them in touch with your ENT because both she and your pulminologist would be more comfortable if they did the surgery with your trach in place because of your intubation issues. It's a guaranteed access point for your airway and they won't have to worry about the difficulties you've had in the past with being intubated.
Big girl in the waiting area - you have always gravitated toward this steering wheel, and are now big enough to sit and play with it all by yourself
You're still not eating quite enough for them to decrease your tube feeds any, so not much progress on that front. At least your weight gain has been steady, even though it's minimal.
The Ugly: I put this one here because it's good and bad and I don't know how to react to it yet: you've maxed out your goals for occupational therapy until you turn three. Obviously, I'm thrilled that you have done so well and met all of your goals so quickly (most of them early!), but it means that the beginning of November is our last week with Ms. Regina coming to work with you twice a week. I'm nervous about keeping up with all of your exercises, but I plan on keeping that time slot reserved for working on OT related tasks with you. And I will (and I think you will too) flat out miss Regina! I forget sometimes that your nurses and therapists have only been in our lives for a year and half; they've become part of our life, our household, our family and it will not feel right to not see her :(
Hiding so you don't have to clean up after a therapy session...
So that's why that's the ugly part. The other ugly part is your two year old attitude that has continued to manifest itself in ridiculous fits and (often comical) tantrums. You are learning that those don't change much of anything though so they've gotten slightly shorter at times.
That's all I've got for now - once I get my laptop back I'll add in some videos and photos to illustrate just how awesome you are and how much you've grown and gained this month. Until then, keep pushing Baby Girl!
By Wednesday morning your nose was running like a faucet, your eyes were red and you just had that look that clearly said "Mama, hold me I don't feel good."
Thursday greeted us with a short-lived fever and a not great report from the night nurse.
By Friday, your nose had dried up and eyes weren't watering. But that cough.
So we ran through the scenarios that have followed a dry, racking cough in the past:
-- not likely to be an ear infection; no drainage from your ears and the fever didn't stick around.
-- not anything in your lungs; they sounded clear and the nebulizer treatments weren't helping.
-- nothing to do with your trach; it was clear and you weren't coughing anything up.
-- possibly allergies, but the cough syrup and allergy meds weren't making a dent.
I gave in and took you to the doctor where we got a diagnosis I never imagined:
You have a cold.
Yep. Plain and simple: a cold.
Nothing life threatening.
Nothing that requires hospitalization.
Nothing that requires massive amounts or intense regimens of medicine.
Nothing that could delay the progress we're making toward removing your trach.
Just a cold.
It was all I could do to wipe the smile off my face and hold the laughs in until I got to the car.
We just got our first perfectly boring, nothing but ordinary, run of the mill diagnosis!
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.
I can't believe I TOTALLY forgot to include this one on the post the other day!!!
We have an official first word - uh huh!
She said it while we were out shopping Saturday with Big Big and I've been working on getting her to say it for the camera ever since then. In typical Baby Girl fashion, she refused. She said it for her therapists though and I finally got it on camera :)
If I had realized that it had been an entire month (instead of the couple of weeks I thought) I would have made myself post a lot sooner! We will hopefully have more exciting news this weekend - we go see the Pulminologist on Thursday and the ENT on Friday to talk about your sleep study results!
So to make up for the lack of posts, here are a lot of videos to show off what you've been working on-
We've been working a lot more with speech therapy on talking. Since your trach has been downsized and you've been wearing your cap 24/7 you are much more talkative! You're getting a lot of sound motions down (if that makes sense) but haven't put any sound with them yet. MaMaMaMa and LaLaLaLa are your favorites!
One of your latest tricks is counting your fingers and toes. We started doing this because your PT wanted you to get used to your feet so that you have more awareness of what's going on with them when it comes time to start walking. (We're still waiting on the gait trainer but are really excited to see you take off when it comes in!) It took a little bit to get used to counting all the way to five before we clapped:
Bath time is still one of your favorite times of the day. You usually don't want to get out when it's time - even when there's no water. And it's freezing. Silly Girl.
This is one of my favorites so far - we finally got your laugh on video!!!!
We had an appointment with the Developmental Center last week and you showed off brilliantly! He was very impressed by your mobility now (that was a concern last time we were here), how many words (and phrases!) you can sign now, and how smart you are! He said the main reason he wants to continue following you is to make sure once you get in school (!!!!) we are going to have a battle with the school to keep you OUT of the special needs class. He said you might need an aide because you will potentially have difficulty with writing, test taking, etc. because of your joint issues but that cognitively you are leaps and bounds ahead of "typical" kids your age!
Last one for today - we're still working on standing :)
