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!
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!
I out off writing this all day yesterday. Not forgot. Put.it.off. We had an appointment first thing in the morning and I dated something 11/19 and they corrected me...so I was well aware. But that meant that I only have 30 days left of NOT having a two year old.
This month we have had our ups and downs; you have made progress in some areas and regressed in others; we've good appointments and just ok appointments.
Here are some things we learned / relearned about you this month:
You. Are. Stubborn. Ok, so we knew this. And we relearn it on a daily basis. But this month, others got to start learning it. We've been trying to convince your PT for a while now that there are days when we don't get any exercises done with you, not because we don't try but because you don't want to. Period. And if you don't want to, it's not happening. We've been trying to get you to use your gait trainer on the carpet (which you do better at now, but at first...) and your PT told us to just put you in it and let you face the wall. Eventually you would get tired of looking at the wall and push backward. Ten minutes later....you were still staring at the wall and she gave up. Lexi -1; PT -0.
We also learned that you are stronger that super glue. And Gorilla Glue. You have to have a strap across the toe of your AFOs (ankle-foot orthotics...aka your boots) because your toes don't lay flat. But the way they make them leaves room for fitting when we pick them up so they can't bracket that strap down until they know where your toes lay so they use an adhesive velcro. Last set of AFOs you totally destroyed the toe strap. Pulled them completely off AND the part of the velcro stuck to the boot. This round, they used their strongest adhesive. Those lasted about 5 weeks. So I super glued it back on. It was off 2 weeks later. So I tried Gorilla Glue. That lasted a little longer...but 3 weeks later it's gone. Sigh.
You LOVE race cars! We had a chance to go to a slot car racing shop with one of my cousins earlier this month and you absolutely loved watching the cars go! They also had a derby car track and some matchbox cars and you had more fun getting the cars and letting them go down the track than anything I've seen in a long time!
You will not give up once you want something. Maybe that fits in with stubborn, but I'd call it more determined. When you are on your scooter in the kitchen and someone is in your way, you've started pulling at legs or pushing them out of the way so you can get where you want to go. If you want the pantry door shut, it doesn't matter if someone is in there or not...it's getting shut. If you want to go down the stairs you will sit at the gate and bang on it and yell until someone comes to help you. If a door is closed and you want it open, you sit there and knock. And knock. And knock. And then start with the Mamamamamamamamamama until it gets opened. We're working on that one.
New words for you this month: up! Da-ddy (much more clear -dy sound at the end); I di (which means either I do, I did, or I am depending on the context); da (yes); and you've been working really hard on saying "Donna" (speech therapist - who is just thrilled) and Nanny. You do really well at imitating and will at least get the right number of syllables in the word your copying.
You absolutely love being on your scooter in the kitchen. It gives you complete freedom to be a mischievous almost two year old. I have found bowls in cabinets they don't belong; I've found your new truck on the bottom shelf of the pantry where you traded it for the bag of chips. And you love helping with the dishwasher, but are not too happy with me when I don't let you play with the dirty dishes. You are so fast on the scooter it scares me sometimes! Your latest trick is to sit and spin in circles...
Lastly, you are making such good progress with your PT! You don't yell and scream (mostly) anymore and are so thrilled when you figure something out. You are soon close to being able to walk without anyone helping you when you're holding on to the couch. You've got the standing part down - and actually ask to be put in your stander now. You spend about 30-45 minutes in your gait trainer and 3ish minutes in your stander every day.
And here's a video just for fun: we were playing fetch with your puppy!
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 :)
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 :)
It seems like these posts come quicker and quicker each month! You continue to grow and surprise us each month with your progress and this month you have certainly shown that you are ready to shine bright!
You are completely off of the ventilator 100% now. In fact, it hasn't actually even been plugged in or hooked up for just in case moments since last Wednesday! We're having some trouble getting you adjusted to the trach collar...because you don't need it! It's causing your secretions to be way too thin and difficult for you to manage when you are asleep so we're actually working on getting authorization from the pulminologist to get rid of that too! If she approves, you will just be sleeping with an HME (Heat and Moisture Exchange - aka artificial nose - a small filter that provides humidification just by breathing) and NO MACHINES whatsoever!
You are doing FANTASTIC with weaning off of the tube feeds. You have been eating like crazy and in order to make sure your weight gain is good before next Tuesday, we've pretty much been letting you eat whenever you're hungry...and you've been letting us know! You are currently eating three meals a day (by mouth) and three to four small snacks in between (mostly the Gerber puff snacks). We introduced you to a few new foods this month and you have just devoured them! Here's what all you're eating:
Purees: carrots, broccoli (as long as it's mixed with something), apple sauce, mashed potatoes, sweet potatoes, butternut squash, green peas, sugar snap peas, avocado, corn, bananas, oatmeal (as long as it's made with apple sauce and not water)
Solids: teething crackers, puff snacks (particularly the cheddar cheese ones), french fries, steamed carrots, macaroni and cheese, cheese puffs (oops...), Chick-Fil-A chicken nuggets
Tried but didn't like: green beans, pancakes, grilled chicken, scrambled eggs, most breads
You are also doing super well drinking water and learning how to get it out of a cup - can't wait to see what they say next week!
Your PT is thrilled with how well you're adjusting to the stander after such a short amount of time. The goal is to get you up to one hour a day; we started with one 10-minute session; bumped you up to two 10-minute sessions, and yesterday bumped you up to two 15-minute sessions and you're doing great! We put the tray on the stander today so you had a book and the TV going and were as happy as you could be! Your new boots are working fantastically and your scooting is getting a little more solid every day. You will be mobile before we know it! ALSO - in two weeks the representative from the company that we got your medical stroller from will be coming by to fit you for a gait trainer; they have a small one they can loan out for trial periods and they think it will fit you! SUPER excited about that!
OT is continuing to work on helping you get more use out of your hands, arms and shoulders. You are doing awesome with continuing to stretch and strengthen your arms - reaching behind you, up and out to the side, and grasping things with your fingers. We're still working on some tummy time and lifting exercises because you will need to be able to catch yourself once you start walking and you still don't like those too much.
Speech Therapy is just as excited as we are about the progress with the feeding and even more so the progress with getting the trach downsized and gone! Once the trach is gone we can actually start working on SPEAKING instead of signing. We're already doing a little bit of rewarding to get you to use your voice when you want something instead of just pointing, but you still are only vocalizing the short a sound. Your signing is above fantastic - most babies around your age know 2-5 signs and it's not until around age two that kids will start using two-word phrases (whether they are speaking or signing). So far you can sign: Daddy, Mama, eat, more, finished, please, thank you, open, bath, bye-bye, up, close and can identify your eyes, nose, teeth, tongue, ears, hair, feet and thumbs. We're working on cookie, cracker, help and sister but those are a little more involved signs. (As we continue learning signs, they are becoming more and more difficult because they involve individual fingers or being able to reach or rotate your hands that you aren't quite ready for yet). You are also asking for: more bath, more eat, sleep please, open please, bath please, up please, and more sleep on a regular basis.
You continue to amaze us all and we are so proud of you. We got some shots recently of you out in the pretty spring wildflowers and I think they pretty much sum up how expressive you have become and how amazing your personality is developing.
You will now smile when we ask you too - a super cheesy, big smile...
And you love sticking your tongue out
You've got three more teeth coming in so if the tongue isn't out, the finger is in
You love watching your feet kick - it's your favorite thing about being in the shopping carts
You have also learned that if you make funny or weird faces, someone will laugh at you :)
This is your super excited face - we usually get this one when we guess which toy or book you are pointing at correctly
You love sitting up on things and showing how big you are!
