Not much to update on this week since we didn't do much after Thursday, but since I didn't post the update here after our appointment:
We had some good news and some disappointing news. Her second leg is healing beautifully! She handled the bandage and stitches removal like a champ...and there were a lot of stitches! She wouldn't let me count them after I showed her the picture 😂
But - her first leg still isn't healing as much as they'd like so he isn't ready to even consider clearing her for weight bearing yet. They've adjusted the wound care protocol and will re-evaluate next week and then we'll make a plan from there. So another Thursday appointment to look forward to and hopefully get some answers from to make a moving forward / coming home plan.
She has been working on increasing the length of time she is in her new braces each day so I made a deal with her on Saturday that we would go to Chuck E Cheese and stay as long as she kept her boots on. I underestimated her dedication to that mouse; it was a costly deal for mom but one I would do over again in a heart beat for 3 hours in her braces!
Other than that, nothing else to report on - see you next week 💙
Last week was basically a long week full of PT; and in between official sessions we get to do the same stretches at the house so that's she's getting a full stretch twice a day. While it is not fun to see her in pain from the muscle tightness and new sensations, there is already a definite change in her leg movement and how quickly they adjust during each stretch.
On Thursday the surgeon's office called and wanted us to stop by after PT so he could check on a spot from Leg 1 that wasn't healing as well as he would have liked when he checked it during the second surgery. It still isn't completely closed but it had improved enough that he took the surgical dressings off and we get to change that bandage out twice a day also. Again, not her favorite thing in the world. He also decided that after the issues she had both rounds in the hospital with her lungs and heart rate doing crazy things that he didn't want to risk any complications by putting her under to remove the stitches in Leg 2 like he originally planned so we will be doing that in his office on Thursday at the post-op appointment instead of on Wednesday. They will also do x-rays at that appointment that will give them an idea of how well the bone is healing which will give us an idea of how much longer until she can start weight bearing and working on walking (aka: how much longer we'll be here!). We would appreciate your thoughts and prayers for a good report on Thursday!
In more exciting news, she got her new braces today!!! For comparison, here are her old braces and the angle of her legs:
December 2022
And here are her new, rainbow colored (of course) leopard print STRAIGHT braces:
Getting fitted
All the pretty colors
Trying to look happy about them being on 😂
It amazes me every single time that I look at her legs how much of a change there is!
I also wanted to say a huge thank you again to everyone who has sent cards or notes or letters or anything - we have gone through 128 mini-clothespins and ordered more so that we can continue our wall decorations. Since we aren't allowed to use thumbtacks or tape on the wall, I've had to get creative. We are just about out of room but will figure out how to get more up there if we need to! She loves getting mail and there have only been a handful of days since we got here that she hasn't gotten at least one something in the mail so thank you all for keeping her spirits up! 💙
I will probably post an update after the appointment on Thursday, but if I forget this will have to hold you over until next week!
I feel like nothing has really happened since my last post in January - which is definitely a good thing medically speaking!
You were out of casts and back at school walking three days a week and using your chair two days a week by the end of January. After you learned about patterns, you were continually finding them in our everyday routines and your favorite to say is "chair walker chair walker chair". We are working on next year's pattern becoming "crutches chair crutches chair crutches!"
In February you started playing T-Ball, which you absolutely LOVED! We will definitely be doing that again next year! Unfortunately, your braces did not hold up so well and I had to do several repair jobs on them throughout the season... can't wait to hear what your doctors say about that at the next appointment :)
In March we had some fun at Spring Break with Grandpa and Nanny. Got to go swimming, fishing, took a road trip to see Pops and Gigi.
You continue to amaze me with how fearless you are. You have started walking up and down the stair by yourself instead of scooting on your bottom one step at a time. You have no issue with wiggling your way up onto or down out of a chair, the couch, beds, etc. It doesn't surprise me anymore to walk in on situations like this:
Your class went on their field trip to the park across the street from the school in April and you thought it was the coolest thing ever to get to play with your friends. They blew bubbles and wrote with sidewalk chalk then had a snack on the play ground. So. much. fun.
School wrapped up more quickly than any of us were ready for and now here we are! It's summer time! You got to spend some time with Nanny last week while Mama was at work and came home with all sorts of new accessories -
Yesterday, we took a trip to Sea World with Daddy's side of the family and you were absolutely fascinated with watching the trainers swim with the animals. You kept asking when it was our turn to swim with them and didn't quite understand what I meant when I said they had been practicing for a long time to learn how to swim with the whales and dolphins. Apparently, you know how to swim and that should be enough! You favorites were definitely the dolphins and sharks.
Today, we went to the dentist and had an appointment with GI doctor. Dentist took some quick x-rays and said everything looks good. He also said that your roots aren't quite as long as they should be, which isn't unusual for kiddos with medical issues since the "stuff" needed for growing teeth before they pop out usually go towards other, more pressing needs in the body. He said not to be surprised if you lose you teeth earlier than your friends and have to wait longer for your adult teeth to come in since they weren't growing under the gum line yet.
GI was thrilled to hear that you have only had two tube feeds since school let out and are eating all. day. long. Unfortunately, your weight is down from our last visit so he wants us to try to find something to boost your calories. If we can't get it on the upward trend again in six weeks when we go for a weight check, we will need to start doing at least one tube meal per day to make sure you're getting those extras in. It is a negligible amount, we only need to increase your intake by 10% of the calories to make a difference; but he doesn't want the downward trend to continue. The tricky part is: you like low calorie foods. You would eat broccoli and carrots all day long, but would need to eat about 1000 times as much as you normally do in order to see the calorie difference! We'll play around with some of the cooking methods and see where we can boost some of the fats in your diet and hopefully that will make a difference because the drink they sent home to sample tastes disgusting!!!
That's all for now - we'll check in at the end of the summer after we see ENT, Ortho, and GI again!
April was a pretty calm month - not a lot to report on! You had a fun time going with Patches to his training classes and got pretty good at telling him to sit. So good in fact, that your teach told us you started telling the other students "No. Sit." very forcefully and commanding-ly (??) when they would try to stand up during circle time. Proud parenting moments. In particular, you have enjoyed the fact that the classes take place in the park where there are slides and swings!
We did have an appointment with the Pulminologist and while she isn't ready to discharge you quite yet, she did move you to an every 12-month appointment. Between 5 and 6 years old she wants to do some lung function tests and continue monitoring those results to give us a better idea of what to expect as you continue growing.
May has been a whirlwind; I can hardly believe we're already at the end of the school year! Your speech therapy has been decreased to once a week because your feeding issues have significantly improved! Now their primary focus is clearing up some articulation issues and working on conversational speaking.
Biggest news from May is that we scheduled your first foot surgery - we will start casting on June 5 and have your surgery on July 19. While I am not looking forward to you having to be off your feet for 12 weeks, and in a cast all summer when you are just starting to fall in love with the water, I am excited for this procedure to be taken care of. It should be the last major procedure until you are between 7 and 10. I am also thankful that our PT encouraged us to go ahead and get the power chair process taken care of so that you are already used to driving your chair around. It will be interesting to start transporting that with us all summer long!
We are working on reducing your tube feeds - your oral intake has shot up in the last few months and you started telling me "no green food" more often because your tummy was too full for anything else. I've been playing around with your blend and have figured out a few options (one for on the road and one for at home) to get the same amount of calories into you, but at a lower volume so you can still eat. There are days when I feel like that's all you do - your food list has expanded greatly: cheerios, fruit loops, pretzels, crackers, chips, chicken, french fries, broccoli, carrots, corn, apples and peanut butter, bananas, potatoes, sweet potatoes and (most importantly) SOMEGHETTI! You will eat and eat and eat if we have spaghetti.
We had some fun last week with a photo shoot we've been wanting to do since Christmas but just now made the time for - you and your babies in your Frozen outfits and matching boots! I am so so so thrilled with the way the shots turned out, and to start working with your Loftstrand Crutches! I don't know that we'll get them figured out before casting starts and you're off your feet for three months but you've had fun trying the last few days!
I think that's all for now - my brain is a little fried with end-of-school activities and appointments and schedules so I'm sure I forgot something! June and July will be busy, exciting, different and anxiety-inducing (at least for me) so I'm sure there will be a lot to report on then!
Surgery went AMAZINGLY well! The ENT said it was almost a "normal" procedure...which is saying a lot for Lexi! It was a long two and half days at the hospital, but we made it. We watched Bunny (Zootopia), ElsaAnna (Frozen) and Horton (Horton Hears a Who) at least three or four times each. Read every book. Played with every toy. But overall, it was a much better stay than last time.
Smiling and Happy while we wait
Getting ready to head back - not as happy after this...
Time to head home!
This is what your incision looked like the week after surgery:
And here it is now:
Another suggestion the developmental specialist had was to start helping you learn how to type now because it will likely be a huge communication tool for you. I searched and searched for a couple of weeks but all kids toys have all of the letters in ABC order. I FINALLY found something at Walmart that looks like a little keyboard and you have been challenged to figure out where the letters are at when they aren't in order!
They made some changes to your HKFOs (hip knee foot orthotic) at Shriners so that they are much lighter and it made a HUGE difference! You've been walking really well in your reverse walker these last few weeks instead of just standing and crying!
Working on the video from AMC Awareness day didn't happen in the waiting room. Got the slides in video mode, just have to find a time when everything around me is quiet for about 30 minutes (HAHAHAHA!) to record the voice portion. I'm going to go ahead and post the EYL post because I don't know when I'll get the video finished and that post was started at the end of June and has just been sitting in drafts since then.
Singing has become one of your favorite things - lately you love singing the B-I-B-L-E, Days of Creation, Elsa Song (Let it Go), Olaf Song (Summer) Itsy Bitsy Spider and Twinkle Twinkle Little Star. You love singing with us during worship and usually start saying "More sing songs" after each one ends.
Trying to get caught up - in between the insanity of school getting out, being gone for different camps and conferences, getting sisters where they need to be and the few appointments we've had, I looked up and it's halfway through July!!!
So here's are all of the updates from recent appointments, accomplishments, adventures, etc:
Trach update: things have been going great with your stoma. No issues, no problems - hasn't healed up much more so we're still scheduled to go in to have it surgically closed on August 1. They said to plan for at least two nights in the hospital for observation so that will be fun...
Feeding Update: You have been consistently eating more and more (like half a teaspoon more...which in "normal" terms is not a lot, but is still huge for you!) and keep trying new things. You let us know when you don't like the new things fairly quickly... usually by handing them back to us. You had GI appointment June 20 and he said everything looks great. They were thrilled with your weight gain (up to 22.2 pounds from 21.4 at your last weight check!) and glad to hear the blended diet was going so well. He mentioned that at the next appointment (in January) he wants to re-run the allergy testing and see if you have outgrown any of the allergies / intolerances that you previously tested for. Sometimes, after your body adjusts to real food after being on formula for so long your tolerances are much better because your body processes things differently. Crossing my fingers on the dairy issue because you STILL ask for cheese anytime you see it!!!
Developmental: We also had a developmental check up on June 22 and you were your usually cheerful, happy, cooperative self....HA! The appointment went about as well as any of your other developmental appointments: he asked you questions, you refused to answer, gave him looks like "why don't you know this?" and refused to show off most of your fun tricks. He made the comment that I should prepare myself to get a lot of calls from the principal when you start school because you will likely be bored the first year at school because you're at a 3.5 year old cognitive level.
We went back again on Monday to test out the power chair and they said it was like night and day difference in your driving! We got all of the paperwork done and submitted so now we just have to wait. You had a lot of fun sitting in the different chairs while we were there and talking up a storm while we waited. We had taken your old medical stroller to donate back so they could use it to loan out while families are waiting for their stroller and you insisted on sitting in it. It is CRAZY how much bigger you are! Your shoulders were at the top of the headrest - when we were using it, your head only went about halfway up the rest! All in all, it was a great appointment; now we just get to play the waiting game on the approval process.
We go to Shriner tomorrow so I'll post an update about that at the same time I update about the trach closure surgery.
I've had a couple of people ask about the presentation that I gave at EYL Camp this year for AMC Awareness Day - I'm working on a post about EYL Camp and in turning the presentation into a video so I will hopefully get that done in the next week or so (or while I'm sitting in the hospital waiting room...).
I also had some folks ask me how we do the blended stuff when traveling so I plan on doing a post about your blends and our process in general fairly soon too.
In the meantime, here are a couple fun things you've been working on:
You and Nanny spent the day learning Pat-A-Cake:
You love singing - this is kind of hard to catch, but it's you singing the B-I-B-L-E all by yourself. You repeat the second line a bit before you move on, but it's still awesome to hear you singing!
And just for fun:
Your first full pony tail! It only lasted about an hour...
Took the front off your crib so you're now in your Big Girl Bed!
You've been begging to go outside but it's SO hot - this was at 8:00 last night,
and we were only out there for about 15 minutes!
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!
So we're just waiting. Patiently. Not so patiently but trying to pretend it's patiently.
You slept well during your sleep study; they only had to adjust the sensors twice. You were a little smarty pants when we got there - you started pointing to all the spots on your head where the sensors are supposed to go. Two years old and seven sleep studies later...you know. We won't get the official results until we go in on April 6 for your airway evaluation...which is where the waiting patiently comes in.
This isn't as much an update as a chance to post something while we wait for Wednesday and to let everyone else know that we don't know anything yet.
Here's some showing off instead -
You can count to 10:
And say your ABCs:
And you finally figured out how to get yourself down on the ground, and then back up again:
Lastly, we got this new toy from your PT yesterday and the first thing you wanted to do this morning was get back in it and GO!
Happy St. Patrick's Day! Happy Wear Green Day! Happy Overload of Irish Blessings on Facebook Day!
Two years ago, I had no clue that today was St. Patrick's Day. Wearing green was the last thing on my mind. If someone had pinched me, I would have thought they were helping me realize I wasn't dreaming - YOU WERE COMING HOME!!! After 86 of the longest days of my life, I was bringing my Baby Girl home. You didn't have a lick of green on either.
I was reading back over blog posts from around that time yesterday and have to laugh at myself back then. You have changed SO much (as all kids do in their first two years) and have much such leaps and bounds. You have grown - not by everyone else's growth chart, but you've got your own chart and you're sticking to it.
Top: first set of soft casts to straighten out your thumb; purple helped with wrists and last helping your fingers curve more naturally.
From your first soft casts to your latest AFOs...you've grown :)
You still aren't a fan of tummy time, but have finally figured out how to roll! And even though you never crawled, you are wearing out your pants and your socks scooting everywhere - either on your backside or on your scooter.
You are no longer confined to the kitchen as you found out that
carpet is not that difficult to get across. You are everywhere now!
Pretty soon though, we'll be walking!
You continue to love books - and have started reading them out loud on occasion.
Reading with Nurse V.
You are such a joy to everyone around you - and I'm pretty sure you've convinced yourself that you are the most funny person on the planet. Your latest fun thing to do is watch yourself on our phones, or watch videos of yourself. This video is hilarious - but watching you watch this video is even better!
There aren't a ton of updates for this post, just a lot of reminiscing. The next three weeks will hopefully go by very quickly, and will be a bit of a flash back as well.
Two weeks after coming home that year, on March 31, you were readmitted to the NICU. One week later, on April 7, we were back in the surgical waiting room as they placed your trach. Three short weeks, but three of the longest weeks. We were just getting adjusted to you being home and then got thrown another curve ball.
Here's the curve ball for this year. Next week, you have a sleep study. Two weeks later, on April 6, you will go in for your airway evaluation. If all goes well, the sleep study results are good and your airway is clear they will admit you to remove the trach the next day. On April 7.
I know a lot of people have been waiting for this update (sorry) but I wanted to wait until you got through a few appointments to update everything all at once!
Feb 4 you had a check in with the Nutritionist / Dietician. For the first time in who knows how long you had weight GAIN! Not loss, not stalled - significant weight gain. The official change was 9.3kg to 9.7kg (about 0.88lb) which might not seem like a lot, but you've been stuck for the last six months so it really is monumental! We have been weighing at home every morning since the transition to blender diet (BD) started and on our scale you've gone from 20.5 lbs to 22. The best part of the appointment was seeing everyone's faces when you walked into the office in your gait trainer. We also went and visited your friends in the NICU and theywere pretty thrilled to see that too :)
You have taken the feeding changes like a champ - most of the time there was not even a reaction! When we transitioned to BD you were to receive 135mL every three hours, six times a day. After we made the transition we increased your volume to 170 per feed (which was enough to drop one feed!) by increasing about 5mL every three days. After your weight check we've worked on increasing it even more with the goal of getting you to tolerate up to 200mL so we could drop to three feeds of 200mL and two "snacks" of 100mL. We've been able to increase 5mL each day with no issues! So as of Sunday, you are in a little bit more of a normal schedule - three meals and two snacks. Now we just need to work on the times!
Over the next few weeks, I plan on substituting out some of the ingredients and start blending by meal instead of one blend for the entire day. The idea is to start using more breakfast-y foods for breakfast (fruit, milk, oats, etc) and then chicken and veggies, or some mix of protein and veggies for lunch and dinner. We'll get there - eventually!
You got your last dose of Synagis (RSV preventative medicine) on Feb 11 and they were pretty impressed to see you walk into their office in the gait trainer as well!
The last update is from the ENT appointment yesterday. We went back and forth with a lot of different options and scenarios and here's where we ended up:
IF the sleep study results look good enough at that point;
AND IF there is no granulation tissue that needs to be removed;
AND IF the ENT determines that your airway has grown enough that she's comfortable with the anesthesiologist at Shriner intubating you for your foot surgery ---
You will be admitted to the PICU and your trach removed. You will have to stay at least one, possibly two days and nights in the hospital for observation.
Alternatives:
1) If the sleep study still shows to much apnea, she'll still do the MLB because that has to be done once a year and that will be the end of this round.
2) If there is granuloma she'll have to remove it and then give Lexi a bit to recover.
3) If the airway hasn't grown enough for her to be comfortable with the anesthesiologist trying to intubate she will write a letter for us to take with us to Shriner at the end of April encouraging them to schedule the foot surgery soon because that's the only thing standing in the way of taking the trach out.
SO - lot's of variable, lots of could best, lots of hopes and lots of prayers needed...mostly for Mama's patience.
To leave you with a bit of cuteness, watch these videos - we've almost got everyone's names down!
Being two years old must be much harder than any of us remember... at least that's what you need us to think right now to justify the amount of attitude and tantrums that you have been having lately. Fortunately, they are short lived and just include you screaming (for about two seconds) and crossing your arms. Usually in response to someone asking you to put your toys up or if you want to get in your stander. At this point it's still comical, but you have had a few that require you to be put in time out. You weren't a fan of that.
We got the sleep study results back from the October 14 sleep study last week, but I haven't had an opportunity to write about them yet. Bottom line: you didn't do as well as they hoped, but it wasn't awful. You had a significant enough increase in apnea episodes with your trach capped (completely blocked off) that they are concerned, but not enough that they think you need to be back on the vent at night. So, good news and bad news. You will go back to using an HME at night (a filter that allows you to breathe through your trach and provided moisture) so that you have some extra breathing room; this has proven to be a bit of a challenge because you aren't used to all of the extra moisture and haven't adjusted to that yet. The extra moisture causes secretions to increase, which means you have to be suctioned more, which also increases secretions because it irritates your airway (vicious cycle). So far, you've only had to be suctioned once because you've been able to cough and clear all of the secretions.
Right now, we've got a bronchoscope scheduled for February 16 to take an internal look and make sure there is no extra tissue growing or anything blocking your airway; the next sleep study is scheduled for March 24. My job between now and then is to get the pulminologist (who thinks the apnea is caused by your anatomical structure - which isn't likely to change between now and March) and the ENT (who says there is nothing we should be doing between now and then) to agree on SOMETHING we can do or try, otherwise the results in March will not be any different and we'll be right back in the same boat and delaying decannulation even longer. Quite a task for Mama to take on.
In other news, you were the cutest little Dorothy ever (I say that with 100% bias because I know of at least four other little girls we know who were Dorothy and I'm sure their parents said the same thing to them) and you had such a great time at the Fall Festival this year! You even let Big Big's friends take you and play with you some so Mama got a chance to take a break :)
You also had a great time watching all the kids come up to our house to get treats - although some of the costumes you were a little unsure about... You wanted some of the toys we were passing out and seemed particularly enthralled by the finger lights and glow sticks!
Last thing, we pulled out this old toy to give back to the PT who brought it to us so she could pass it along to another patient and you have played with it non-stop since we got it out! Guess we need to start doing that with some of your other toys so that they can be "new" again too :)
