Yep, Medical Monday didn't happen because we were too busy having fun with Nanny and Grandpa! They made it in Monday afternoon just in time to come see the therapy dog agility demonstration, hangout and play some games before you were worn out and ready to rest. We took them on a tour of the Quantum House, showed them around some of the places we've established as our regulars, and took a walk where we saw 28 lizards because they are EVERYWHERE!
Helping with the agility demonstration
Showing Grandpa around Quantum House.
So here's the update you would have gotten on Monday:
Last week went really well. Lexi had PT every day Tuesday-Friday and tolerated the stretching as well as could be expected. She had a follow up on her leg surgery along with the Pre-op appointment for her other leg on Thursday. She lucked out because Dr. Feldman told her she could keep the bandages from round 1 on until she was in the OR and they would take them off while she was under anesthesia so she wouldn't have to feel anything. Anything sticky on her skin is a huge no-go so for her, bandage changes as just as bad as the surgery itself 😧
Other than PT, we didn't have much going on. We had a slow weekend of resting and getting ready for this week. Tuesday was an off day for everyone - no therapy, no work for Mom; we went exploring with Nanny and Grandpa, found some Mexican food for lunch, a pretty waterside park and an iguana on the walking path that gave Nanny a heart attack when it ran in front of her.
Today, we were back at the hospital at 5:00 am, checked in and ready to go for round two! She did much better with pre-op, took the relaxing medicine as a nose spray and went back with no problems. Intubation went smoothly, surgery went well; they were able to match the first leg length and got the left side down to zero degrees also. From this point, it is Lexi's turn to do the hard work and commit to PT in order for the surgeries to be effective.
Thank you all for your continued prayers and support - she loves the cards she continues to get and we are thankful for all the wellwishes!
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 :)
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!
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!)
We are slowly but surely working our way into a routine that allows for enough time to get everything taken care of!
Mondays will be our "fresh start" day - we change out equipment parts, tubing, sensors, filters, canisters, etc. Today was our first trach change at home and everyone survived! Got all of the supplies restocked for the week and made sure we were ready to go!
We've set aside some time for you to come downstairs and be with the family so every day when sisters and Daddy come home you are ready and waiting for some attention! You got some one on one (plus nurse) time with each of your sisters today so that was neat to see. Little Big actually (politely) kicked me out of your room because she "needed to talk to you about important stuff".
We didn't make it out for a walk today, but we'll make up for it by going on an outing tomorrow and Wednesday - we've got a pediatrician appointment tomorrow and an appointment at the High Risk Infant Clinic in San Antonio on Wednesday. Busy, busy week!
Tonight they weren't able to schedule anyone to work (still working out the kinks in scheduling) so Mama is on her own! Sleep good and don't give me any trouble please :)
Happy 4 Months Baby Girl and welcome to our new space! Every 4 month old gets a blog right?? I decided to give the blog a clean start so that I could go back to writing about other things on my blog like I used to, without making everyone who wants to know how Baby Girl is doing weed through posts. I also want to use this space to chronicle Baby Girl's life in one dedicated space so that when she is older she will know what a headache she was as a baby :) (Just kidding future Baby Girl - you were and still are a blessing in all of our lives and we love you very much!!!)
So: Happy 4 Months! Here are four brief recap points of what has happened up to this point -
1) You were born (duh.) To read about some of the things that we went through around that time, read this post, this post and this post. That pretty much sums up the first few days of your life, and the months leading up to it!
2) You have had 3 major surgeries: there was the diaphragm plication first, then the g-tube and fundoplication surgery, and lastly the tracheotomy. There were a few bumps along the road to recovery, but you pulled through them all!
New Year wasn't as exciting - you did a lot of sleeping, but I did get the first picture of you smiling :)
I might have gone overboard on Valentine's Day fun with a heart outfit for every day that week...but Big Big gets some of the credit / blame for helping me pick them out!
And that's nothing compared to Nanny's spring break fun:
You came home on St. Patrick's Day but you were in the hospital for half of it...and I didn't put a lick of green on you!
Most recently, Happy Easter! Nanny and I went shopping to find you a cute Easter dress for your first Easter, but Daddy is actually the one who picked this out!
You were a little bit of a stinker and wouldn't smile AT ALL for Nanny...until she put her camera down. But you made sure to let us know when you were tired of picture taking -
You're back in the hospital for now, getting stronger, smiling, being the (nosy) social butterfly that all of the nurses love and getting better so that you can come home for good - We're just waiting on your sleep study next Tuesday so we can get everything straightened out. Meanwhile, Mama is pulling her hair out thinking about everything that she has to learn to take care of you! But every bit of the stress and heartache and every tear will be worth it when we get to bring you back to where you belong!
We love you Baby Girl - Daddy, Big Big, Little Big and I are ready for our family to be back together, but we want it to be when you're recovered and healthy and ready so we'll be patient!
