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 :)

Lots of New Tricks This Week! - April 30

So not a lot of information in this week's post, but a lot of new talents to show off :)

We did have the weight check appointment on Tuesday - you lost 0.2 pounds. POINT TWO POUNDS. That's 3.2 ounces. You have three new teeth coming in and had been sick with allergy mess for the last week so 0.2 pounds is not that big of a deal. BUT, they didn't make any changes. We go back on May 12 for another weight check so in the next two weeks we will be packing you full of every high calorie anything that you will eat!

In other news, you got fitted for your gait trainer and hated it. At first. Just like everything else. But the second time we put you in it, you did awesome! We have a little bit more waiting to do because they need to get you a smaller frame so we can't use the company's demo like we had planned, but because you took to it so quickly, we have a really good chance of it moving pretty quickly. You will be getting the teeny tiny one all the way on the left side, in lime green :)

A few other fun tricks we learned this week:

Sitting on the stairs, talking to Nurse T -

The next thing we know this was happening:

You love knocking down block towers...but lately it has become a total destruction method. No block left standing:

You discovered how much you like apples:

And last night, we found the remote to the mobile on your bed and didn't realize it had batteries in it. You quickly figured out which button to push:

Happy 16 Months! - April 20

It seems like these posts come quicker and quicker each month! You continue to grow and surprise us each month with your progress and this month you have certainly shown that you are ready to shine bright!

You are completely off of the ventilator 100% now. In fact, it hasn't actually even been plugged in or hooked up for just in case moments since last Wednesday! We're having some trouble getting you adjusted to the trach collar...because you don't need it! It's causing your secretions to be way too thin and difficult for you to manage when you are asleep so we're actually working on getting authorization from the pulminologist to get rid of that too! If she approves, you will just be sleeping with an HME (Heat and Moisture Exchange - aka artificial nose - a small filter that provides humidification just by breathing) and NO MACHINES whatsoever!

You are doing FANTASTIC with weaning off of the tube feeds. You have been eating like crazy and in order to make sure your weight gain is good before next Tuesday, we've pretty much been letting you eat whenever you're hungry...and you've been letting us know! You are currently eating three meals a day (by mouth) and three to four small snacks in between (mostly the Gerber puff snacks). We introduced you to a few new foods this month and you have just devoured them! Here's what all you're eating:

• Purees: carrots, broccoli (as long as it's mixed with something), apple sauce, mashed potatoes, sweet potatoes, butternut squash, green peas, sugar snap peas, avocado, corn, bananas, oatmeal (as long as it's made with apple sauce and not water)
• Solids: teething crackers, puff snacks (particularly the cheddar cheese ones), french fries, steamed carrots, macaroni and cheese, cheese puffs (oops...), Chick-Fil-A chicken nuggets
• Tried but didn't like: green beans, pancakes, grilled chicken, scrambled eggs, most breads

You are also doing super well drinking water and learning how to get it out of a cup - can't wait to see what they say next week! 

Your PT is thrilled with how well you're adjusting to the stander after such a short amount of time. The goal is to get you up to one hour a day; we started with one 10-minute session; bumped you up to two 10-minute sessions, and yesterday bumped you up to two 15-minute sessions and you're doing great! We put the tray on the stander today so you had a book and the TV going and were as happy as you could be! Your new boots are working fantastically and your scooting is getting a little more solid every day. You will be mobile before we know it! ALSO - in two weeks the representative from the company that we got your medical stroller from will be coming by to fit you for a gait trainer; they have a small one they can loan out for trial periods and they think it will fit you! SUPER excited about that!

OT is continuing to work on helping you get more use out of your hands, arms and shoulders. You are doing awesome with continuing to stretch and strengthen your arms - reaching behind you, up and out to the side, and grasping things with your fingers. We're still working on some tummy time and lifting exercises because you will need to be able to catch yourself once you start walking and you still don't like those too much.

Speech Therapy is just as excited as we are about the progress with the feeding and even more so the progress with getting the trach downsized and gone! Once the trach is gone we can actually start working on SPEAKING instead of signing. We're already doing a little bit of rewarding to get you to use your voice when you want something instead of just pointing, but you still are only vocalizing the short a sound. Your signing is above fantastic - most babies around your age know 2-5 signs and it's not until around age two that kids will start using two-word phrases (whether they are speaking or signing). So far you can sign: Daddy, Mama, eat, more, finished, please, thank you, open, bath, bye-bye, up, close and can identify your eyes, nose, teeth, tongue, ears, hair, feet and thumbs. We're working on cookie, cracker, help and sister but those are a little more involved signs. (As we continue learning signs, they are becoming more and more difficult because they involve individual fingers or being able to reach or rotate your hands that you aren't quite ready for yet). You are also asking for: more bath, more eat, sleep please, open please, bath please, up please, and more sleep on a regular basis.

You continue to amaze us all and we are so proud of you. We got some shots recently of you out in the pretty spring wildflowers and I think they pretty much sum up how expressive you have become and how amazing your personality is developing.

You will now smile when we ask you too - a super cheesy, big smile...

And you love sticking your tongue out

You've got three more teeth coming in so if the tongue isn't out, the finger is in

You love watching your feet kick - it's your favorite thing about being in the shopping carts

You have also learned that if you make funny or weird faces, someone will laugh at you :)

This is your super excited face - we usually get this one when we guess which toy or book you are pointing at correctly

You love sitting up on things and showing how big you are!

But of course we do still have these moments...

Leaving the Baby Steps Behind - April 17

Wow what a week it has been! So many updates and things that have happened that I don't even know where to start so we're just going to walk through day by day:

Saturday: Little Big and I got to take you to a resource fair hosted by a great organization called Kinetic Kids. There were a lot of great vendors and we were able to get contact information that will help us out as you continue to grow and need more things to help you out. There was also a great group that takes medical equipment (like your medical chair that you're quickly out growing) and refurbish them for kids that can't get approval for them. Little Big got to find out the joy of resource fairs as she walked away with a bag full of candy and toys :) After the fair we all went to listen to some great lessons at the Annual Southwest Lectures. It turned into a really long day, but you did so well being out and about all day long.

Monday: We introduced you to a stander. Your PT has another client that doesn't need his stander anymore and it fits you so we are borrowing it for a while. You were not at all happy the first time you were put in it so that we could adjust all the straps, but since then you've done two 10-minute sessions each day with no problems...although getting to watch the GiggleBellies on the big TV while you stand there probably doesn't hurt things :)

Getting things adjusted....

"Mama stop taking pictures and get me out of here!"

Second Day - smiling and dancing in the stander...and looking way too big!

Tuesday: We had your nutrition / feeding clinic appoint Tuesday and it went SUPER well!!! We spent about an hour talking about how things were going, how much you've been progressing, all the different foods you've been eating (and how much MORE you've eaten over the last week), and they listened! The doctor recommended dropping your 12:00 feeding (which is during your nap time anyway). When you wake up, you eat a snack and then dinner with the rest of us at dinner. You are doing so well with eating and feeding yourself...and the floor has been cleaned more often in the last two weeks than I'd care to admit :)

In addition to eating so much better over the last week, you've also been talking up a storm! With the smaller trach size you are able to get more sound out, and with the tubes in your ears you are hearing yourself much more clearly and are speaking much more loudly - it's been awesome!

Anyway, if things go well over the next two weeks with you continuing to eat well without the 12:00 tube feeding and maintain your weight, when we go back for your weight check in two weeks they will drop your 6:00 pm feeding and go from there slowly eliminating your tube feedings until they're all gone! They also gave us permission to start introducing liquids, starting with small sips of water and you have done GREAT with that! It was a fantastic appointment and I'm so thrilled with how it's going so far with the changes.

Yesterday, we went back to Shriner in Houston for a "quick" trip to get your new boots! They are so cute - and have some heavy duty velcro that I think even you will have trouble getting open :)

They are wedged on the bottom (some new wedges just in time for summer!) to help make them level on the bottom since they pull your foot down to help stretch out the ligaments at the top of your foot. This will allow you to continue working on standing and walking without needing to find shoes that fit over your new boots. You did really well on the trip there, finally ate some chicken nuggets at lunch (meat finally!) and enjoyed figuring out how your new cup works to get the water out. The way home, not so much. You were really tired and just ready to be out of the car. Plus, it was pouring and loud for about 3/4 of the way home so that didn't help much. We finally got home and you crashed pretty quickly after your bath.

Whew! Lots going on, a lot more appointments to come in the next few weeks as we move forward and make these giant steps forward!

One Year Later - April 8

It feels a bit surreal to me to be sitting in this (always) freezing waiting room again. The last time we were here waiting on you was when they placed your trach - exactly one year ago yesterday! I still can't believe that you've cut the original prognosis in half: two or theee years old down to 17 months (by the time we finish the process!) You've done great this last week with no support breaths and tonight we start sleeping with NO VENT!

We had kind of a rocky start this morning. I set two extra alarms because I knew I would not want to get up at 4:00 am, and I didn't, but we were still about 10 minutes behind schedule when we left. Didn't make a huge difference though because there were about ten other families trying to get checked in also. We had to be here at 6:00 am. Finally at about 7:30 they called us back to start getting all the paperwork done, answer questions, etc. That's when they told us that you were going to have to get bumped until closer to noon because we didn't stop your feed until 4:00am...which I specifically asked about and was specifically told 4:00 was ok... And you aren't supposed to have anything for eight hours before the surgery to minimize the risk of aspiration if you have a reaction to the anesthesia that causes you to vomit. Sigh. 

Super curious about this thing that they put on me...

Fortunately, the ENT has a completely full schedule (9 procedures!) this morning and said you would be fine since it was just milk (and a very small amount at that since it's such a slow feeding at night), and you had a fundoplication with your gtube surgery that doesn't allow you to throw up anyway. Woohoo! So at about 8:45 they took us upstairs, I got to sign all the consents, ENT was thrilled about the weaning process getting going and moving so quickly so she said she was going to look at possibly downsizing your trach today also (or within the next week if she doesn't do it today) and then we waited some more.

Another bracelet! This one is prettier...

They gave you versed (a sedative) at about 9:20 and by 9:25 you were signing "sleep" and ten minutes later looked like this:

You kept trying to lift your head up and sit up but couldn't. It was too sad looking to be funny.

They took you back at about 9:45 and here I sit...

Almost 12 hours later...

You were back in surgery for a little less than 2 hours when they came out to get me. ENT said you were amazing! She still wants to list you as a "moderately difficult intubation" because your neck will still make things difficult once your trach is out, but as long as they know that ahead of time it should be ok.

The airway evaluation was excellent. There was one small cyst that she didn't even touch because it doesn't pose any problem. There was no scar tissue, no granuloma, absolutely nothing! She did notice that the left side of your vocal chord wasn't vibrating but she wasn't sure if that's something new or from today or something that's been there so she was going to look back through all of your surgery notes and procedures to see if it was ever noted before. You were making plenty of noise trying to get out of your bed and into my arms though so the right side is more than making up for it!

She cleaned out your ears and went ahead and put tubes in to prevent any future drainage issues. Your ear drums were still red and dull looking from the last infection but she said there was no fluid build up yet so hopefully the tubes will keep that from happening.

Last, but probably most importantly, your trach got downsized! She said since it all looked so great, and you had done so well with the BiPap settings this last week, and she doesn't want to be the one that slows down the process that she went ahead and bumped you down from a size 4.0 to 3.5. With a smaller diameter trach you will be breathing around it more and getting used to the air going in and out of your throat instead of the trach. You will also be able to be more vocal as the air gets to your vocal chords.

Whew! She conveyed all of that (and I actually remembered it!) in about five minutes in the recovery room where we were stuck for close to 45 minutes while they got all the final instructions and charting taken care of. And you were not happy. You kept burrowing into my shoulder and getting really still - almost like you were hoping they couldn't see you if you weren't moving. As we counted the 13 poke holes later from them trying to get an IV line open, it made more sense! Then they moved us down to the post-op area where we had to hang out for about an hour to make sure no problems popped up (and you took a short nap finally!) and then we finally got to leave at about 12:15!

You were so happy to be leaving - you smiled and waved and gave kisses to everyone as we walked down the hallway. Once we got home you took about a two hour nap, but other than that you've been your usual cheerful, happy self!

I LOVE playing with my hats. But it can't just be one of them. I must have both.

Brushing my teeth like a big girl! For some reason, you won't let anyone else brush them, but you have no problem putting the toothbrush in your mouth!

You did so awesome today and I am SO proud of you! We're getting so close to being done with the whole trach thing and it's getting more and more exciting each day (and more and more nerve wracking!)

Happy Dance Time! - April 3

What a crazy week (on top of a crazy month) it has been! And guess what, things aren't going to slow down for a while now!!!

After the exciting ENT visit last week, getting your airway evaluation scheduled, and taking care of some other things on Friday, you and I headed to the EYL planning retreat to get ready for Camp this summer! We had a great, but busy, weekend and you did pretty good - aside from not taking very long naps (and not at all on Sunday!) and getting super cranky and clingy as I was trying to get all of our stuff packed and loaded. We got home Sunday around 5:00, it took me almost 45 minutes to get all of your stuff set back up because you WOULD NOT let me put you down and then I put you in bed for your 6:00 feed and you were out by 6:15. Whew! Overall, it was a really good trip and we got to see some old friends and had lots of fun :)

On Monday, you had your 15 month check up - everything looks good! You are low on the charts for weight, but you always have been. You are nowhere on the chart for height, because we've never been able to get an accurate measurement with your legs straightened out (and you especially didn't want to straighten them out on Monday!). She was excited to hear that the ENT is ready to start weaning you off the vent as soon as the Pulminologist gives the thumbs up! You did have to get two shots, but then the nurse gave you a new rubber ducky so you were ok with that.

Tuesday morning, we went and took more pictures with Aunt C. Here are a few that I snapped of the process - I can't wait to see the real shots!

We got back from pictures in time for you take a nap (which you didn't) and then head to the Pulminologist office...where you got 5 more pokes. You had to get your last round of Synagis (RSV prevention) and they had to take blood and weren't able to get a good stick on your foot so that took three times. Needless to say, you were not to thrilled with that process. And you were tired. And didn't want anyone but me to hold you. We left the office with semi-decent, ok, good, great FANTASTIC news -

Tuesday night we started the process of weaning you off the vent at night time!!!

Here's the plan:
- Starting Tuesday: one week of the vent being on bi-pap mode (similar to when we started weaning you during the day time; we turn the settings to positive pressure only, no breaths - so if your breaths dropped below 20 per minute, it would not kick in for you); the night nurse will be carefully monitoring your O2 level (so far you've stayed 97-100%) and your breath rate (normal!)
- Next Wednesday morning: airway evaluation; clean out your ears and possibly (probably since your last infection is now on round three of antibiotics and being too stubborn to go away) insert tubes; talk with ENT about downsizing your trach.
- Starting Wednesday night: NO VENT at night. We will have to use the trach collar setup (that you hate) to make sure you are getting enough humidification, but NO VENT! At some point during this part, we will downsize your trach. This will allow for more air to pass around the trach so you can get used to breathing on your own, while it's still there if needed.
- Mid May: we cap the downsized trach so that you are not breathing through it all. This get you used to breathing on your own, through your mouth and nose, with no assistance from the trach.
- June 7: Sleep study
- Shortly thereafter: (pending good results) DECANULATION. NO MORE TRACH. DONE - GOODBYE - ADIOS - Throw the vent out the window!! (ok maybe not that last part...)

If everything goes as planned (and as the ENT mentioned, Lexi never does anything as planned) you could be done with the trach and vent in less than three months. The original prognosis was two to three years, and you could be getting rid of it in 13 months. Talk about not doing things as planned!!!

We have some other appointments scheduled throughout the process (Nutritionist, Developmental Clinic, new boots from Shriner) but the next months will be focused on a HUGE leap forward!