Surgery went AMAZINGLY well! The ENT said it was almost a "normal" procedure...which is saying a lot for Lexi! It was a long two and half days at the hospital, but we made it. We watched Bunny (Zootopia), ElsaAnna (Frozen) and Horton (Horton Hears a Who) at least three or four times each. Read every book. Played with every toy. But overall, it was a much better stay than last time.
Smiling and Happy while we wait
Getting ready to head back - not as happy after this...
Time to head home!
This is what your incision looked like the week after surgery:
And here it is now:
Another suggestion the developmental specialist had was to start helping you learn how to type now because it will likely be a huge communication tool for you. I searched and searched for a couple of weeks but all kids toys have all of the letters in ABC order. I FINALLY found something at Walmart that looks like a little keyboard and you have been challenged to figure out where the letters are at when they aren't in order!
They made some changes to your HKFOs (hip knee foot orthotic) at Shriners so that they are much lighter and it made a HUGE difference! You've been walking really well in your reverse walker these last few weeks instead of just standing and crying!
Working on the video from AMC Awareness day didn't happen in the waiting room. Got the slides in video mode, just have to find a time when everything around me is quiet for about 30 minutes (HAHAHAHA!) to record the voice portion. I'm going to go ahead and post the EYL post because I don't know when I'll get the video finished and that post was started at the end of June and has just been sitting in drafts since then.
Singing has become one of your favorite things - lately you love singing the B-I-B-L-E, Days of Creation, Elsa Song (Let it Go), Olaf Song (Summer) Itsy Bitsy Spider and Twinkle Twinkle Little Star. You love singing with us during worship and usually start saying "More sing songs" after each one ends.
You might notice that the date in the title does NOT match the date that this is being posted... that's kind of the bad thing about having a December birthday: it gets swept up in the Christmas stuff. Sorry. Welcome to the club!
We had such a fun time at your birthday party! I think you realized a little more that the day was all about you (more than last year at least) and were super excited about that! Unfortunately, being the awesome mom that I am, I only took pictures of the decorations before the party. Sigh. Nanny and Grandpa got a few videos, and posted a few pictures that I swiped, so they helped out with those below but if anyone else took any - PLEASE SHARE!
You started getting really into watching Curious George around the beginning of Thanksgiving so I thought that would be a perfect party theme...but you dropped him just as quickly when we found another show you liked better. You still liked the monkey stuff, (which is good because you got three different monkeys for your birthday and one for Christmas...) but it was more of a joke for me since you hadn't watched George in about 3 weeks at this point. Oh well :)
You still weren't overly excited about the cake part of it all though...maybe the third time we'll get a little more smashing in. I'm still hopeful :)
In other "now you're two" news:
We have new goals for PT - pulling to stand, sitting down safely (not just plopping down), working on going up the stairs (since you've mastered coming down...)
and cruising along the furniture more fluidly being the biggest ones. You decided to work on the pulling to stand part on your own. the same day your PT mentioned you needed to work on it. We were pretty excited. You've also decided that a great time to work on standing up is during worship - the pew backs are just the right height! (Sorry to anyone sitting behind us who might be a little distracted by the head popping up every few seconds...)
You continue to be obsessed with cars - in fact you got quite a few of them for your birthday and Christmas and insist on playing with every single one of them whenever we play cars. We can't just get out one or two of them. Your favorite new ones are the train from Grammie and the police car from Uncle D and Aunt C that makes all sorts of siren noises (thanks...) You've finally figured out how the ramp works that the PT brought for you to work on standing with so it gets used quite often!
You are vocalizing SO much more now! You've got a handful of words that you say consistently and clearly and are reaching the point of babbling all day long - most of it sounds REALLY important and if we don't understand you, you will find a way to make us figure it out! You also do really well with mixing your words / sounds and signs to help clarify what you want / need. Words you are saying: Mama, Dada (sometimes Daddy), bubu (bye-bye or bubbles), upa (up with heavy emphasis on the p), Lala (Lila), Sisa (Sister...Lainey is a little difficult), Apa (usually means Grandpa), nana (Nanny), Anana (banana), da (yes, this or that), and shishi (chicken). Most importantly: vi-ta which means FRITOS.
You are working on puppy (you can say it but usually don't with much confidence) and we are starting to work on animal sounds. You've got sheep down and I really need to work on getting it recorded when you're in a good mood because it is hilarious. You make a noise in the back of your throat when we ask what a cow makes that probably is more accurate than moo.
You continue to grow and learn more and more things each day - and pull things out of the past that we had completely forgotten about! You not only used your first three word/sign phrase (Sisa, eat, cracker), but you used a sign (cracker) that we haven't worked on in about 6 months - in fact, your nurse and I didn't even realize what you were saying at first because we had forgotten the sign! You have used it daily since then.
The most fun thing about this month was the two days that you carried this box around looking for Daddy. We have no idea how you knew that this box was Daddy's or why you thought he needed it back, but you were insistent!
Your favorite thing to watch right now is the Mother Goose Club and we often catch you making the signs or doing the motions to the songs throughout the day, whether the show is on or not. You've recently figured out Itsy Bitsy Spider and I caught you signing it the other day in the middle of announcements at worship. The best part was at the end when you clapped for yourself and smiled at me because you realized I was watching :)
Big things are happening starting tomorrow that require their own post, but I'll wrap this one up by saying that 2016 is going to be a great year of progress for you!!! Keep fighting and keep working!
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!
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 :)
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 :)
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 :)
This week has been a whirlwind trying to get everything back to normal after our quick trip last week! Saturday we had Cousin L5's birthday party, then we went and hung out with some friends and played games. Sunday you REFUSED to take a nap during services, then we went and saw Grammie for lunch and you absolutely crashed when we got home. You slept from about 2:30 until 6:15 when we woke you up just so you could be awake some before bedtime!
Monday you got to see all three of your therapists and they were thrilled with how well the Houston appointment went! Tuesday we introduced you to the swing - you got it for Christmas and Grandpa helped me hang it about three weeks ago, but we're just now having nice enough weather to use it!
You were a little unsure at first...
Slowly started to enjoy it...
Really getting the hang of this...
MOST EXCITING THING EVER!!!
I think Ms. Tab and I had more fun watching your face than you had in the actual swing. Wednesday we went back out there, but all you wanted to do was eat the swing :)
The difference in right before lunch vs after dinner
Wednesday, your ST suggested we start letting you feed yourself more because you are wanting to be in control over what goes in your mouth and when. You've started insisting again that you help when someone is feeding you and have gotten particular about what you want to eat. We tried a couple of new things this week that you weren't too fond of (snap peas being one of them) but we did learn that you absolutely enjoy chocolate...as long as it's not ice cream (still too cold for you!)
This is my "I'm so excited about how awesome this is" face
So tonight I just put some food on a plate and let you have it. This is what we ended up with:
A variety of foods we know you like. You did pretty well at first...
Note the missing plate. You wanted it to go over the side with the rest of your cookie and the yogurt bites...
Sigh. I guess we're at that stage. Time to buy a rubber mat to go under your high chair :)
This week you've started really insisting on having your books a lot. As long as we guess the right one that you want (which you will let us know with your super excited face). This evening you were so tired from not taking a nap that you were super fussy when we got back from taking family pictures (can't wait to see them!) and kept signing sleep, but every time we laid you down you just cried and cried. I rocked with you a little bit and you kept pointing at your book shelf so we got you a book and then you pointed to your bed. I laid you down in bed with your book and you were happy as could be laying there reading your book! When the night nurse got here, you had already fallen asleep and the day nurse told us that she looked over at one point and you had the book tucked up under your chin with your blanket. We couldn't find the book so we are assuming it's somewhere under the blanket with you. I wish I could have gotten a picture of you reading in bed - reminds me a little bit too much of myself :)
This was the third book you wanted to read - kept signing more when you finished each one!
We had an ENT appointment this afternoon and one of the first questions she asked was: When is the pulminologist going to let you start weaning off the vent at night? She's ready for you to be done with the vent so we can get rid of the trach! She said everything looked great as far as she could tell. We scheduled for you to have an outpatient procedure on April 8 (happy birthday Nanny!) to do an airway evaluation. It's done in the OR and you will be sedated, but as long as everything goes well you'll come home that day (but we all know how much you like surprises....) They will do a complete internal exam of everything; make sure there is no scar tissue or granuloma building up around the trach, check the size of the trach, check your lungs, make sure everything looks good and see if anything else needs to be taken care of. While you are under they are also going to clear your ears out (apparently you have extremely waxy ears) and see if there is a really bad fluid build up that keeps causing you to have ear infections (even though they are pretty infrequent for a trach baby) and if there is, how old the fluid looks to see if it's not draining at all or just on occasion. If need be, they will go ahead and put in tubes. I'm fairly optimistic that since you've only have three double ear infections over an almost seven month period that it won't be necessary.
Next week will be just as busy - we have your 15 month appointment on Monday and pulminologist on Tuesday - hopefully she'll agree that we can at least start working on a plan to get off the vent more!
As we continue on the never ending quest to find out what's going on with you...
We made it through last weekend. You actually had really good days on Friday and Saturday. Hardly any coughing, no fever, no fussiness. Then Sunday morning you woke up clearly not feeling well again. We spent the day resting and relaxing and sleeping, which you were asking for a lot. Even in the doctors office...
Monday and Tuesday you ran a low grade fever on and off. It was kind of weird because on Tuesday you only had a fever on your right side. You woke up from your nap really flush on that side so we thought it was just the way you had been laying, but it didn't go away. Your right arm and leg felt warm, the right side of your face. Most of that afternoon when the nurse took your temp, the right side would be slightly higher than the left (100.0 vs 100.4) So we went in for your follow up on Wednesday and guess what, you have an infection in your right ear. Sigh. Back on antibiotics. I'm thinking that's why on Sunday you all of a sudden made a turn back to being sick, that's when the infection kicked in. At least that's what I'm hoping and not that they missed it every time they looked in your ears.
Your final molar FINALLY broke through on Tuesday also so you've been wanting to eat again! You absolutely refused to let the speech therapist anywhere near your mouth on Monday morning so we worked on your signing instead. Although you weren't in most cooperative mood for that either... in fact, you were all over the place as far as moods go.
Your typical, under the eyebrow look whenever you don't want to do something
(I imagine you saying "really?? you want me to do what???)
Your new look for the week. It's actually pretty mean looking when you get it straight on.
This was when she said you had to eat at least one bite of something.
("Go ahead. Try and make me")
And this is your new cheesy, happy face.
The result of her handing you a teething cookie.
All three of those photos were taken in about a 12 second span of time. That's been your mood lately. You are way too young to already be having teenager mood swings...
The last few days we can tell you definitely feel better. You are more playful, not wanting to sleep all day, just all around happier - if only we could get rid of the cough. The last appointment they finally said that it was probably more of a result of all of the weather we've been having and maybe once it clears up the cough will too. That's as close as I've gotten anyone to saying you have allergies.
They want you to continue on the steroid until your 15 month (!!!!!) appointment at the end of the month, and we'll follow up about the ear infection then as well instead of making us come back in after 10 days since that week is jammed packed for us. Sisters have spring break next week so we're looking forward to some fun time with them; then we leave Sunday for your appointment in Houston on Monday and will come back from that Tuesday; Thursday you have an ENT appointment; Friday, you and I will leave again for the EYL camp planning retreat. WHEW!
On a sweeter note, the past two days you've been really clinging to this bear that my grandmother made you for Christmas. Nanny pulled it out of the basket for you to play with a couple weeks ago and it's been in your crib ever since then. I gave it to you two nights ago to keep your hands occupied while I got everything hooked up for you to go to sleep and you haven't wanted to let go of it since - you even pulled it away from Big Big when she tried to touch it yesterday.
You've never really slept with a toy all night before, they usually got pushed over to the side, but at about 1:00 this morning when I got up to check on you I saw this:
Blanket and teddy bear - a firm grip on both of them :)
So I know I'm almost a week behind on this post, but hey, at least it's just a week!
You had such an awesome month since your birthday - lots of Christmas fun, lots of family time and finally all settled down and back in our school and work routine. We took some great one year old pictures with Aunt C. You wowed the doctors at your developmental appointment and have continued to learn even more since then!
We had an Orthopedic appointment January 16. He took some x-rays to make sure your hips are still in place (they are) and said next time we'll take spinal x-rays because you are at an elevated risk for scoliosis. He didn't want to make any more changes to your treatment until we can get in for a full evaluation at the Arthrogryposis Clinic at the Shriner Hospital in Houston.
Your arms (shoulders, elbows and wrists) have gotten full range of motion back but your PT is still concerned about your hip and knee joints. Those are still not fully straightening out and that is what is preventing you from being able to stand by yourself - your bent over at the hips and knees. So we asked the Orthopedic Dr (at the PTs request) about some hip and knee braces that you could wear at night to help stretch those joints and muscles more. His response was that he would rather have a full evaluation so that we don't risk messing up anything in those joints. Since they haven't straightened out as much as the arms with the stretching and exercise, his concern is that it's not a joint issue (the contractors) but that it has more to do with the arthrogryposis side of the issue (the skin being stretched too tight). If it is the arthrogryposis then the solution will involve surgery - whenever the skin forms across a joint all of the muscles, blood vessels, arteries, etc. follow the skin, so we would need to have a team of people involved to look at all aspects of the surgery (ortho, neuro, etc.) to make sure that nothing is compromised. They will also look at your ankle bones because you have what's called a vertical talus that will require surgery to fix, but it's a really painful surgery so if there isn't much chance of a solution for the hips and knees (meaning you won't walk) then there isn't a point in putting you through the pain of fixing your feet.
ANYWAY - all of these if/ then scenarios that will all depend on getting an appointment in Houston for a full evaluation. They sent in the request paperwork so now we wait until we hear back from them.
Aside from those things, it has been a great month.
You still love butternut squash most, but will still eat apple sauce, avocado, sweet potatoes, mashed potatoes, peas. You aren't as big of a fan of bananas anymore, and do NOT like ice cream or most sweet things that you've tried (which I guess is a good thing). The ST is working on having you feed yourself, which you sometimes are ok with but mostly just like opening your mouth for someone else to put the food in.
You are signing SO much more now! You sign up, Mama, eat, finished, more, open, bye-bye, please, thank you, sometimes Daddy, and we're working on bath. You are doing much better with your speaking valve - when we put it on your have a constant stream of noise coming out that sounds like a whine, but is the equivalent of when babies first figure out they can make noise and just constantly babble. When we say "use your voice" you will actually push the air over your vocal chords and talk. It doesn't bother you near as much when you cough or cry with the valve on either. You are still very expressive with your facial expressions and definitely have no problem communicating!
PT and OT are both going well. You continue to push yourself across the floor, but don't like using your arms still...although you will tolerate it for a few more seconds than before. OT is especially working with you on putting objects in a bowl or bucket or something else and rolling balls back and forth. You still love doing things at your desk!
You are fine being on your knees now, especially in front of your kneeling toy from Uncle B and Aunt K.
You love playing with the phone part of the toy and use it to call people all the time - and have since decided that anything can be a phone. Or you just put your hand up to your face with nothing in it.
Talking on your spoon phone...
Bath time is still one of your favorite times of the day, but you have also discovered that you like water just about anywhere! You love splashing your fish, frogs and ducks the bowl in Bible class when we talk about all the water animals and you recently had a fun experience with Nanny learning how the bathroom sink works!
You are such an amazing fighter and continue to surprise us everyday with the things that you are learning!
