19 Months Old! - July 31

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!

Slightly Delayed - July 18

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:

:D

The After-Shock of Camp - July 6

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 :)

18 Months and Test Results - June 21

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.

Here are the "highlights":
- You slept for 400.5 minutes out of the 462.5 minutes recorded;
- You never reached REM sleep; most of the time (49%) you were in the second level of sleep;
- You had a total of 35 obstructive apneas, 492 hypopnea episodes and 417 desaturations.

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.

First Word! - June 17

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 :)

Stop growing Big Girl!!!

Oops - June 15

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 :)

Getting Caught Up! - May 18

May has completely slipped away from me - and now I'm almost 3 weeks behind on updates.

The first week was super crazy busy because we had Focal Point at the church building and I went to help work the registration desk every day. I didn't realize how much I has missed being there last year when you were still in the hospital! You stayed home Monday and Wednesday for your therapy sessions, but you got to go with me on Tuesday and meet a LOT of people who have been praying for you and watching you grow over the internet. We also had a sweet family come have dinner with us that day - they had stayed with us two years ago during Focal Point, when you were still the size of a piece of rice. We had just gotten our first sonogram images when they were here last! We also went to dinner on Wednesday evening with one of my good friends from college and his wife. We don't get to see them nearly often enough considering they only live a couple hours away! So that week flew by and I'm sure you did some super cute things that I don't remember and some really awesome things that I wrote down somewhere else. Here are a couple pictures from that week:

Learning how to write with OT

You had a blast with this gift bag :)

We left Thursday as soon as Daddy got home and went to visit Nanny and Grandpa in Midland for a few days. Nanny has been asking when we could come down to meet all of her teacher friends that have been following along and praying for you also, so we figured Mother's Day weekend would be a good time to make the trip! We went visiting at the school Friday, then we took an unexpected to trip to Lubbock to get a power cord that Mama forgot (feeding pumps require power...) so by the time we hit the road Saturday, you were DONE with the car! We had to stop several times on the way home to get out and walk around and give you a break from the car seat!

The next week (last week) was just as hectic but not in an as exciting way...

Monday, you were still super cranky from the long trip and didn't want to do anything. Which was ok with me because I wanted / needed a nap too, but you still had speech therapy.

Tuesday, we went grocery shopping and then you got a short nap before we headed for your weight check. Despite the fact that you have been eating CONSTANTLY (it seems like) you lost weight. You went from 19 pounds to 17.8 pounds. And when they went back and looked, you've been on a downward trend since the middle of February. When the scale showed the reading, Nurse T and I both just looked at each other and our hearts sank. Then you stared to get really cranky because your nap got interrupted so we were all just done with that appointment. They switched you off of 2% milk and sent orders to our medical supply company to send us Pediasure... which we're REALLY hoping insurance will cover. When you first came home, they wouldn't cover the formula to fortify your feedings because it wasn't the primary source of nutrition (the breast milk was) so hopefully that won't be an issue this time. If not, we're looking at doubling our grocery budget for this stuff. Not a good way to start the afternoon. It pretty much went downhill from there - issues in sister's karate class; leak in the washing machine fill hoses; huge hole in the dryer vent duct (which I only found pulling the machine out to mop up water); totally forgot I had a conference call.... one thing after the other on Tuesday. Not a good day.

Wednesday was a little bit better. I was cranky after a trip to Lowe's and some handyman work; you were still super cranky and just wanted to take a nap. You didn't want to do much with OT and as soon as you heard the PT's voice coming up the stairs you started crying. After dinner though, we celebrated ONE YEAR of you being home! It technically wasn't until Thursday, but Daddy had to work late and sisters wouldn't be home so we ate cupcakes early. I had planned on making you another big cupcake like we did at your birthday party because you don't mind stuff on your hands now so I was hoping to finally get some smash cake pictures...but I totally forgot. So I ran to the store and grabbed the first cupcakes I could find. The icing was a little too hard to play with, but you didn't have any problem digging in to the cake! It wasn't quite the smashing mess I hoped, but it was better than nothing :)

Testing the waters...

The inside has yummy filling!

Big bites!

That helped improve the week slightly - but Thursday you were back to your cranky self again. Your PT wasn't able to get any work done with you because you just cried the entire time. She has suggested having someone new come work with you, hoping you will react differently to having a new face around. Her first day will be tomorrow so we'll see how that goes! Friday was another lazy day, which was good because it rained ALL day long!

Saturday, we had a karate tournament for Little Big to go to, came home for a quick lunch and nap for you, then off to Big Big's end of the year band concert. You absolutely loved the music! You were a bit whiny between the songs, but as soon as they started playing you just sat and stared. At one point, you actually started dancing to the song they were playing and clapping your hands. We got back home and I figured you would take a nap, but you didn't. We went on a walk with Daddy after he got home from graduation and then you were ready to crash.

Sunday was the usual: short nap during church services, cranky lunch, long afternoon nap and then you slept like a rock all night. One benefit that we found to the switch to Pediasure is that it doesn't have to be refrigerated, which means I can put the entire amount for the night time feeding in the bag at the start and not have to add more at midnight and 3:00 am which means I got to sleep most of the night too! Woohoo!

Anyway, that catches us up to today. We're getting closer to your sleep study and hopefully closer to getting rid of the trach. It looks like the g-tube will be a little bit more tricky though. Keep working hard and keep making progress! Mama will eventually learn how to be patient :)