Lots of PT last week, each day a little better than the last.
Thursday, she was cleared to stand AND clear to start working on walking AND cleared to start making plans to go home! As long as nothing major happens before our appointment this Thursday, we'll be headed out first thing Saturday morning!!! The incision from her first surgery hasn't fully closed yet so we are still keeping an eye on that but it had made a lot of progress and Dr. F was happy with where it was at.
So of course, at Friday's appointment we got busy with standing! She was a little nervous at first but absolutely rocked it...and then wanted to practice standing on Saturday and Sunday also 🥳
Today, things just kept getting better and better: SHE TOOK STEPS!
Here's looking forward to 4 more days of hard work and then HOME! This Thursday we'll do some final imaging to make sure everything looks ok, her legs are even and there are no other concerns. I'm sure we'll have some follow up appointments to come back for but we're looking forward to getting back home for awhile.
I've been working on this post for a few days now and trying to het things finished enough to be posted, but in between EYL Camp in Kerrville and now, we went to Tulsa for the AMCSI Conference and then I flew to Texarkana for EYL Round 2 so it took a bit longer than I thought it would.
You were so much more comfortable at camp this year - you really opened up and talked to so many more people! You had a great time with Nanny and LOVED helping her drive her chair. You got pretty good at it by the end of the week, but still haven't grasped the concept of holding the controller down to keep it going. Nanny said you had some pretty jerky rides a few times!
You actually ate really well this year at camp - which is usually not the case when we're away from home! You had a blast going to the dining hall every day and helping Mama count as the participants came in, giving high fives and waving and clapping to everyone.
The biggest part of the week for us this year was June 30 - Arthrogryposis Awareness Day. We were given the chance to share our family's story and present some information about AMC and how it has effected our lives.
The participants were given the opportunity to donate money to AMCSI as part of the Big Give activity (in the past we've collected school supplies, sports equipment for an after school program, etc.) In less than three hours, they collected almost $500 for us to bring with us to the AMCSI Conference in Tulsa! We are so blessed that there are so many people who love and support our family, and this was an amazing out pouring of their love!
We took a big group camp picture this year and got some great shots with the students holding their blue bracelets up high in support of AMC Awareness Day!
It was a great week and you definitely have some more friends and fans after those few days!
There hasn't been a lot to update on in the last few weeks, the biggest news was that they did cut nursing hours after your trach came out so we lost our night nurses. Other than that things are trucking right along pretty smoothly. We were finally able to clear out the equipment and supplies that are no longer needed from your room - the equipment was picked up on Wednesday and one of our nurses took a lot of the supplies for her friend who does medical mission work. It's amazing how much space it cleared up in both your closet and the garage! The only things we have left that we use daily are gtube supplies and your pulse ox monitor when you're sleeping.
Trying to figure out why we pulled the suction machine back out!
On Tuesday we had follow up appointments with ENT and Pulminology. ENT said everything looked great, but your stoma is not going to close up anymore on its own. We have a procedure scheduled for August 1 for her to go in and close it up the rest of the way. It will be a two night stay in the hospital (again) but at least we know a little bit more about what to expect from that!
Pulminology said everything looked and sounded great also. The next big hurdle that she wanted to put on our radar was a lung capacity test...when you turn FIVE. We will continue following up with her regularly, but she said things will definitely be less intense now - winters will be our biggest "on alert" time, but other than that to keep moving forward. She was concerned about your lack of weight gain, but also understands that you are so much more active now AND was happy to hear that your oral intake has increased since the trach came out. We have an appointment with GI on June 20th so we'll see where we need to go from there.
After those two appointments were over, we had one more stop to make - the company where we got your medical stroller from. Summer goal: learn how to drive with a joy stick!
We will go back for another practice session on June 20 also; your PT is working toward getting a power chair for you to use when you start school in January! The tech at the company did tell us that if things got delayed there is the potential for them to be able to place a loaner chair at the facility (school building) for you to use until everything is cleared up. You were really unsure about the chair at first (as with most things) but by the end of your 20 minute test drive you had started figuring it out a little bit more and were getting a little frustrated that it wasn't going as quickly as you would have liked!
You continue to work so hard with PT - standing, walking, cruising, weight bearing - and LOVE playing with your kitchen too! It's awesome to watch your imagination running. You love making tea for Mama; though I have yet to get a recording of you pouring the tea, you know it comes out of the tea pot through the top...we'll just have to learn not to turn the whole pot over before we let you loose in the big kitchen! You did learn how to get water out of the door of the fridge and Nurse Tabatha helped you add in the sound effects - turn your speakers up and listen really carefully for this one:
We have a more consistent bed time routine now that includes singing some of your Bible class songs - which you love! Almost every morning when I get you out of bed you ask if we're going to Bible class. Here are a few of our favorites that we were able to capture a couple of nights ago:
The Days of Creation: you are working so hard to get your fingers to stand up!
My God is So Big: we hadn't sang this one in a while, but you remembered it!
And my favorite, Jesus Loves Me:
You have started talking so much more clearly in the last month (something that both the ENT and Pulminologist commented on) and it's been amazing to see you add new words and phrases almost daily. You started singing along with us a couple of weeks ago and when you don't know the words you will nod your head to the beat and open and close your mouth like you are lip syncing; it's pretty precious to watch :)
Our summer is looking to be a busy one, but not because of medical stuff (finally!). In addition to EYL Camp, and sisters' camps, we are planning a trip to Tulsa this July to take part in the 11th Annual Arthrogryposis Multiplex Congenita Support Conference. One of the online groups that I am part of mentioned it a few months ago but we were so uncertain about how our summer was going to look, if you were going to be having foot surgery, etc that we didn't think it would be a possibility. Now it is! I am really looking forward to getting to learn from some really awesome doctors, therapists, nutritionist, and families - but what I am looking forward to most is getting to meet with some of the other moms that I've been getting to know online and making connections with a whole new branch of our family! I've recently began visiting with a few who are actually from San Antonio / New Braunfels area who are going to be there!
Anyway, we've got a lot going on and I can't wait to see what else this summer brings us. We've got 4.5 more days until sisters are done with school and then the rubber hits the road for us! Last Saturday you have been home for officially two years; today you are officially 2 years and 5 months old - I'm not ready to say I have a 2.5 year old yet, but it looks like I am going to have to get over that because nothing is slowing you down now!
A little outside / trampoline time... learning about static :)
I know you've been waiting on an update for several things so here we go:
Trach - things are looking GREAT! Your stoma hasn't quite closed up all the way, but it is getting really close. You have been so much more vocal over the last two weeks and it seems like your vocabulary has exploded - almost as if you've had all these words stuck up in your head, but they haven't been able to come out... Until now. Of course, every time we tell people that you start clamming up and refusing to talk. Like you did with your speech therapist. I was finally able to get video of a snippet of a 45-minute conversation you had about your books one day:
Your appetite has increased significantly also! We've gone from a point where I couldn't remember what you ate because you were barely even eating to I can't remember what you ate because you ate too much to keep up with. I still have to remind myself that "so much" is still barely anything compares to a non-tubie two-year-old though. I was bragging the other day that you ate four or five bites of beans and almost a whole tablespoon of rice - for you, that's monumental; for others, one mouthful. You've gotten a bit braver about trying new things also - the other night we had frito pie for dinner and you wanted to eat the chili. You took a few bites and then started dipping your fritos in it.
Foot Surgery: We made the trek to Houston for your regular check up at Shriner. The Upper Extremities doctor was not there that day, but we were able to get your hand splints adjusted. Lower Extremities were pretty happy with your progress, would like for you to spend more time in your HKFOs, and were NOT happy with the walker that our PT was able to get for us from another patient... So they sent us home with a new one! The PT knew that one wasn't in the best condition and was too big for you, but we didn't have the luxury of being picky - we'll take what we can get when it comes to not waiting for approvals! The new walker is perfectly Lexi-sized and you love it!
The downside to the appointment is that they do not want to do the surgery on your feet yet; probably not until next year. They want you to be really solid in your walking and standing so that when the time comes for recovery PT, you won't be re-learning balance, center of gravity, how to step, etc. but just remembering it from before. They said it was similar to riding a bike - once you get back on it you automatically remember how to balance and pedal. If you are stable and steady walking in your braces, after the surgery you are more likely to just pop back up. Not what we wanted to hear, but it's where we're at - so we'll keep working on standing, weight bearing and walking and hope you progress like they want you too!
Blended Diet: this is going SO well! You have so much more energy, you haven't had any major illnesses, and you bounced back from your trach removal and bronchoscopy with no issues - all of which I attribute 100% to the blended diet. I was so nervous going in about how the hospital and nurses would handle the orders, but they were great! The dietician gave them the heads up that I would be bringing in your food and the nurses more or less told me to let them know what I needed, they would let me make the calls on how much of what, and how often. We did a few days of broth and crackers; came home and slowly started adding stuff back in to the blend. We did find out that you weren't digesting the avocado as well as we thought - the day we added it back in you had really high residual amounts after each feeding (we check before each feed to see what's left in your stomach from the previous feed) and you got constipated again. Did one more day with the full amount to make sure that was the issue; then went to half the amount for a few days, problems went down slightly but didn't go away. Took the avocado out - no residual, no constipation! You have now been off Miralax for almost two weeks with no problems!
In other bathroom related news, we are slowly working on potty training. You are pretty good about going in the morning, and will tell us now when you need a diaper change. Still working on being on the before-you-go notification!
You had a playdate with Cousin L last week and you weren't too sure what to think. He gets really excited and then really loud pretty quickly and you kept looking at him like "would you just calm down..." You also weren't sure what to think about another kid playing with your toys! You guys did pretty well playing in the vicinity of one another, but didn't really play together until we went outside to play bubbles. He tried really hard to be patient and walk slowly beside you, but it didn't last for very long :)
Anyway, over all things are going fantastically well. They did finally cut down on our nursing hours so by the end of May we will be losing our night nurses. They are gradually decreasing the hours so this is our first weekend without nursing and by the end of the month we will lose Monday - Wednesday nights too. It's great that you're doing so well, but a bit nerve wracking for me to think about not having the constant help. You really don't need it at night though - no more nighttime feeds, no potential aspiration from secretions because of the trach, no need for constant monitoring!
You continue to be an extremely happy baby and love music...or just anything with a beat. This morning you were dancing to the beat as your nurse tapped out the air bubble from your feed. I must say, you do have rhythm.
We've been waiting a long time to get the good news we got yesterday - your sleep study results were about the same as the last sleep study; still technically classifies as having mild apnea but not anything they can do but monitor for now. There was still no granulation tissue inside your trach tract; there was a small cyst but nothing that they were concerned about. Your airway has grown enough that "anyone with pediatric experience can intubate her". The stars aligned. The rings of Saturn were visible from Pluto. Everything was signed off on and we were admitted to the PICU for overnight observation with a small size trach. As long as your oxygen level stayed up and you didn't have any extra labor of breathing, the trach would come out.
Well.....What.A.Night.
You apparently don't remember being in the NICU, which is good; but we found out you DO NOT like hospitals. You didn't take a nap yesterday which made you super cranky all day, so I hoped you would sleep really well like at home - we would put you down early and you'd sleep soundly. But at home, it's quiet and dark... It's neither of those things here. So we would sleep for about 45 minutes, your blood pressure cuff would activate and wake you up every hour, you would start fussing which set off your heart rate alarm (which was set ridiculously low) which would make you even more mad. Vicious cycle. I would get you calmed down after about 15 minutes and you would fall asleep until...
This went on from about 9:00 pm until 3:00 am when I finally convinced your nurse to shut the stupid machine up and take off the blood pressure cuff. Then we got about 90 minutes of sleep before you just decided you were done trying to sleep at all. Around 6:00 I finally caved in and just turned on the iPad with your videos and then laid back down until they came in at about 6:45 and said the ENT was on her way! I had barely finished sending morning update texts and posting when she got here, laid you back, pulled the trach and put a bandage over the stoma. DONE.
You weren't sure what to think about all that.
Your stoma is larger than the ENT expected, so she's a little bit concerned about you sucking part of the bandage in so we have to watch that closely. She doesn't want to sew it up for a couple of months though just in case we need quick access or have to reinsert it. The tract will heal from the inside out so it will start closing up on its own and whatever is still open by the end of summer she will sew up so that you will have time in the fall to learn how to cough stuff out before winter gets here. It seems really odd to already be planning for the winter!
So we get to hang out in the hospital for the rest of the day, one more night of observation (which hopefully will include sleep), and then head home tomorrow. In the meantime, they don't want you taking anything by mouth yet, which makes it super fun when all you have been asking for is your drink. And hopefully they will let us start feeds soon because your tummy is making some loud noises!
I fully intended to do an update after the first week...and last week...and now we're almost through the third week of transition and things have been....AMAZING!
The first week our goal was to test your volume tolerance. We moved all of your feedings (about 800mL in a 24 hour period) to the day. Six feedings per day. Every three hours. 135 mL per feed of formula. Best thing: we got to get rid of the pump and do gravity feeds. No tears were shed over not using the pump. Worst thing: our new feeding schedule started with a lemon water flush at 6:30 am, followed by weigh in and feeding at 7:00, and it ended with your last feeding at 10:00 and a water flush at 10:30. You did amazingly well; your mama was exhausted though.
Highlights of the week:
- We quickly discovered you needed to be occupied with playing or watching videos in your stander or you would try to "help" us a little too much;
- You had some allergies issues and spent a few days coughing quite a bit. It didn't take us long to learn to keep our fingers on the clamp...you only coughed your formula back out of the tube and all over me once.
Week two we started switching one formula feed per day for a blended feed. I was ready to go with the first blended feed, got it all mixed up and ready to go...and we clogged your button. Twice. Clogged so much we had to take it out to clear it and re-insert it.
We finally figured out that the blender we have was not going to do well enough at grinding up the bits of chicken or rice so we had to bite the bullet and purchase a Blendtec. We had hoped to put it off a bit while we saved some money and make the Ninja work until we knew for certain the BD was going to be a go for us, but you can't do a job properly without the right tools. Thankfully, I was able to find a good deal on Amazon with next day Prime delivery!
So day 1 felt like a failure, but we were able to get one blend without chicken and rice into your system. The Blendtec came in the next day after we had done your two feeds (sans chicken and rice again), but with enough time for me to mix for day 3. WOW - what a difference!
We celebrated Saturday when you got your LAST FORMULA FEED!!!! You weren't too sure why we were wanting to take a picture of you, and didn't seem nearly as excited about it as we were :)
We launched straight into week three trying to get the calorie count up in your feed without making the volume increase too much and finally got that figured out. We also worked on slowly increasing the volume that you could tolerate until we could drop the 10:00 pm feed. So for the next two weeks we'll stay where we're at with 170mL per feeding, 5 times a day. We go back on Feb 4 for a weight check and to visit with the nutritionist so things will be fairly stable until then.
Getting into a new system requires a lot of trial and error, but hopefully we're out of that phase for now. It also means that Mama goes insane until she gets the system down. Our system right now includes about an hour of prep work every Saturday (in addition to the usual snack prep for sisters' lunches and meal prep for family dinners) to get all of your chicken, tofu, veggies and fruits cooked, blended down, portioned out in the correct amounts and into the freezer. I make your blend once a day, then pull out the frozen stuff for the next day so that it has time to thaw before making tomorrow's blend. I also have to blend a double batch on Saturday's since we're gotten back into the schedule of staying at Grammie's house all day on Sunday between morning and evening worship services. I think we've got it all figured out and will just spend the next couple of weeks polishing the system.
Jars labeled and ready for eating
It's not the most appetizing color, but it works!
Tofu, Chicken, and Blueberries/Peas/Spinach in the freezer
In other news this month:
You are working on pulling up on EVERYTHING! We installed a grab bar in the living room / kitchen so you can eventually learn how to get on and off of your scooter by yourself - so far you just like pulling up on it. We've had to be really careful about watching when you're on your scooter because you try to pull up on the chairs, which aren't too stable, and almost pulled it over on top of yourself the other day!
Grab bar in entry way
You got yourself stuck in the pantry because you pulled up on the shelf but didn't know how to sit back down!
We also let a few things go this month - one being cloth diapers, the other being your high chair! You love sitting in the big chairs like sisters so I figured it was time to bring back out the booster seat and you LOVE it! You scoot up to it a lot and say "Lexi's" - I guess just making sure that we all know who gets to sit there :)
I asked you to smile and you started making monkey noises...
You've also taken a LOT more interest in standing up and walking - which means we've got to get that foot surgery on the books as soon as they'll let us because you are NOT going to wait for them!
One of our PT goals is to start working on going up the stairs. Generally you can make it about two stairs before you give up and want to turn around and go back. To be fair though, there are a lot of them, and it takes way longer to go up than down!
The last big update is that we've started working on potty training! After showing off some of your new tricks to the PT, she asked if we were potty training yet because your smart and would probably pick it up pretty quickly! We said we had a potty chair but hadn't really pushed it yet because we don't want to frustrate you if you can't get to the chair by yourself or we can't get you unhooked, unbuckled, and onto the chair in time. So we've started putting you on it right after you get up from your nap and first thing in the morning, and you've gone every time! The next step is learning the sign for potty and how to say potty so you can hopefully let us know when you have to go! You've woken up from your nap and sleeping dry the last couple of days so hopefully you're learning how to hold it until you're on the chair.
I'll leave you with this little ray of sunshine - you've found your favorite song on this toy and know exactly which button to push to make it come on!
On Monday we got the most exciting, forward motion news we've had in a LONG time...
I've spent the last month or so looking into, researching, preparing and planning to ask your GI doctor if we could switch to a blender diet (BD) and get you off of the formula. Most of the things that I've read or looked into (found some GREAT support groups on Facebook and TONS of recipes!) lead me to believe I might have to do some convincing so I went in to the appointment with a transition plan, recipes broken down by nutrients, all sorts of information - I was ready to make my case. I never had to pull out the folder! Your GI doctor just said: "Ok. I'll have the nutritionist come visit with you. Anything else?" "Um - nope!"
So they came in gave us a transition plan that is MUCH quicker than the one I had out together, gave me a simple blend that has everything you need for the day to get us started (so I only have to make one blend and then divide it out) and said "come back in a month for a weight check and we'll evaluate and make any changes we need to." YES!!!!
I wanted to make this switch for several reasons:
1) By two, very few (if any) kids are still on a diet that is primarily formula. Yes, you are eating orally, but not enough to gain weight. You've maintained a steady 20.5 lbs for the last 8 Mondays, but no gain. I knew they would want to increase your calories since you are SO much more active now, and didn't want it to be more powder. You need food.
2) All of the things that I have read about being on a BD point us in a very positive direction: weight gain, less constipation (meaning dropping a daily medication!), better nutrients always lead to overall better health, and even the possibility that you will actually start eating more orally as your body begins craving real foods with all the nutrients you need.
3) We need to get you off of the night time feeds. One of the main reasons you aren't hungry during the day is because you get formula pumped into your stomach all. night. long.
So here's where we're at:
Tuesday we started a new feeding schedule. The dietician wanted to move all of your feeds to the day time to see how you tolerated getting that volume in a shorter amount of time. So this is now our daily feeding schedule:
Starting next week we'll replace one formula feed a day with a blended feed. By next Saturday you should be completely off of formula! They gave us a blend that I can make once a day, so I spent all day yesterday cooking, cutting, blending, chopping, freezing, measuring, weighing, portioning and getting everything ready. Adding weekly tasks and grocery items to various lists. I *think* I will be able to spend about 2 hours every Saturday getting everything ready so each morning all I have to do it dump in x number of cubes of this, of that, a bowl of this and a scoop of that.
Peas, Blueberries and Spinach
Side result - lots of good chicken broth saved up!
Coffee cans work great for storing in the freezer!
You've done fantastic the last two days on the new feeding schedule, although you are NOT thrilled about waking up an hour earlier than usual! You've tolerated the volume change without any issues and have actually already started eating more by mouth, more often during the day! We're not sure if it's because your stomach is being stretched a little bit more or what, but yay!
Side bonus: we're now using a feeding method called "gravity feed" where we let your stomach accept the liquid accept the liquid as quickly as it chooses which means we're no longer fighting the pump AND your feeding times dropped from 30 minutes to about 5!
We have one month to get things going, get adjusted and see how you handle this basic blend. We'll go back in February for a weight check and see where to go from there! Hopefully we'll get to branch out into other blend recipes, include more variety and play with the recipes some to fit our usual grocery list. The eventual goal is to get to the point where I just toss whatever we're eating into the blender and feed it to you.
BIG changes - hopefully we'll see some BIG results!
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!
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.
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 :)
