A few minor updates... June 26

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!

Blended Diet - One Year Later

I’ve been meaning to write this post for a while, and even took pictures last time I did all the prep work, but haven’t sat down to put words on paper (...screen...) until now. There has been a lot of sharing and questions on one of the Facebook groups I am part of about storage methods, delivery methods, volume and calorie amount, etc so I thought I would document our blended diet system.  I will start out by saying that I will be forever thankful for the mom who shared this post about their traveling blend system because it COMPLETELY changed the game for us last summer and I have spent the last few months tweaking their system and making it work for us because it.is.A.MA.ZING!

I will also say, that I know this system won’t work for everyone, every tubie is different and has different needs, but this works for us and has simplified the feeding process for us - and in the world of medical kiddos, any system or process needs to be as simple as possible because no one has time for complicated...oh wait, that’s for parent of any kid 😊

Last intro item, we have been blending for a little over a year now and as your needs have changed, so has our system. I started out using silicone ice cube trays to freeze one ounce portions of each ingredient then would blend up one of each cube for the day. That was a storage nightmare. So I started cooking, portioning and freezing each day’s ingredients in a mason jar and would prep about a week at a time. Then I figured if I could prep for a week, I could prep for a month and have it all done. I bought the wide mouth tallest jars I could find and could fit one day at a time in each jar. I would pull it out of the freezer and put it in the fridge to thaw the night before. We would blend it, pour each portion into our daily jars and heat them up as each meal came. Again, storage.

The next solution was to use thermoses to keep the blend warm all day. So I would heat the tea kettle, pour the water into the thermoses to heat it up while I blended each morning and it would keep the blend piping hot all day long. Awesome. Except when we travelled. And then you started needing less by tube because you were eating more by mouth so we were pouring a portion out each day. Enter the post I linked above...

We used that system while we were gone for a week last summer and it was amazing. Didn’t have to worry about keeping things cold or hot, mix up one meal at a time, wash out the bottle and done! When we got back home, I went back and forth - I knew that we couldn’t afford to continue using the pouches from the store because of the expense but I loved having things ready for an individual meal. PLUS - you was getting more calories in a slightly smaller volume so you were eating even more by mouth because you weren't as full from tube feeds.

So I tried looking into methods to replicate the pouch recipes but could never figure out the best way to do that. Then it clicked one day: use the blend recipe you are already using. Duh. We know you doesn’t have any intolerances to any of the ingredients, it already works into our budget for those items, we can make some little tweaks for calories and done! So that’s how we got where we are now: 

This is part of 90 pouches, which will last anywhere from 30-45 days. Some days you gets three tube feedings, some days just two if you have eaten well orally. Each pouch is mixed with 2-3 ounces of either homemade broth, coconut water or prune juice so each feeding is 303 calories plus the liquid used and about 150-160mL, which is almost twice the calories at half the volume of our old method. Win. Win. WIN.

I pull out one tub each Saturday to go to the kitchen freezer and pull out pouches the night before for the next day.

Recipe:

Coconut milk - 1 cup

Honey - 3 oz

Olive Oil - 4 oz

Chicken - 6 oz

Rice - 126 grams (~1.5 cups)

Bananas - 180 grams

Spinach - 144 grams

Blueberries - 90 grams

Sweet Potatoes - 213 grams

Peanut Butter - 6 TBSP

Yield: 15 pouches at ~300 calories each

Process:

I spend one day cooking everything and dividing it into six portions. Each portion is a triple batch from the daily jar system and makes about 15 pouches - so the first win was taking what would have been three days worth of food and it makes five to seven days worth of pouches. I did not use coconut milk or peanut butter in her blends previously so those were huge calorie and nutrient boosters - yay healthy fats! 

The next day I blend each bowl and fill the pouches. One batch of pouches fits in one of these amazingly perfect sized ice cube trays and four trays fit on the bottom shelf of our freezer. I have had some issues with the blender not quite getting everything blended perfectly, but since I am 100% convinced it is user error and I’m overfilling the jar I am going to do a double batch instead of triple next time I make pouches. 

This method works super amazingly well for several reasons:

1. Already mentioned the higher calories in smaller volume aspect of things. We saw a huge increase in your oral intake when we started this method.
2. If you're not hungry, we don’t mix a pouch. It’s that simple. Way less waste!
3. We can vary the liquid in the blend based on what you needs. Beginning of the fall / winter sick season you are getting lots of bone broth. Random episodes of constipation, we run prune juice one mix a day for a few days to help you out. Otherwise, coconut water for the extra vitamins and minerals. 
4. I spend 2 days prepping and you're ready for up to a month and a half - and that two days is being shortened as I get more used to the amazing-ness that is the InstantPot... 12 cups of rice in 15 minutes? Yes please!
5. It is super simple for ANYONE to feed you now! For school I send a jar with the pre-measured liquid, one pouch, shaker bottle and scraper - teacher or nurse dumps it all, shakes it all up and it’s done. No measuring, no issues.

A couple downfalls:

1. I still have to worry about keeping them frozen when we travel. This is much easier to do now than with the jars, and if we are gone for more than two days I go back to the store pouch system but I always see a drop in your oral intake because of the higher volume.
2. The pouches themselves are an expense. It balanced out for us since I was able to make the food stretch a little further, but that is something to consider. We tried refillable ones but they weren’t as quick and simple as these disposable ones.
3. It’s messy. The video on the site where I ordered the pouch filler makes it look so simple and easy, and it is, but when you’re making 90 of them your kitchen won’t be as spotless as the commercial...of course, any batch cooking or blending system will do the same.

So that’s where we’re at now; as your needs change this might too, but this is a flexible and adaptable enough system that I see us sticking with this base for a while. You have gained almost three pounds since last June which is the most gain you’ve had in...ever... We will continue to encourage oral intake and drop feedings as needed but for now we are in a good holding pattern and I’m loving it!

End of May and June 2017 - June 21

I've been awful about updating - and we've had some big things to share! Summer jumped into the picture WAY to soon and now I loom up and it's almost July...

So here goes:

You finished your first official "year" of school - and we got the good news that you will have the same teacher next year so I'm hoping it doesn't take another 3-4 months for you to settle in and be comfortable enough to start participating again! This next year, at least at home, we will be working a lot on hand work: writing, drawing, etc. Due to your foot surgeries and the casting issues that will require you to be off your feet until mid-October I figure it will be a good time to get busy with that so when you hit kindergarten we will have a better idea of whether or bot you will beed any assistive / adaptive technology or not. We had a great time at your end of school picnic and the teachers gave us these cute planters you helped make with your fingerprints so now you have "my own gardens!" - we are just waiting for your seeds to sprout!! 

We got started with casting on June 5. You tolerate the cast fairly well during the day - it definitely hasn't slowed you down any!! We are having a hard time making you understand that you can NOT stand up in your cast...I have a feeling after the first surgery you will get it! The first few nights were rough; you didn't quite understand why we couldn't take off your cast like we do your pink boots (HKFOs) so you could sleep. You woke up a few times each night for about a week before you finally settled into sleeping with it.

They opted to use a soft casting material because 1) it's easier on the skin so better for long term use; 2) they don't have to cut it off with a cast saw, it just unrolls. Unfortunately, that means it's not as stiff as a typical plaster cast so any amount of pressure can cause it to crack or shift and effect the angle they are trying to stretch your foot to. Downside number two is that it only comes in white, but we took care of that pretty quickly!!

We went back on June 19 for your first re-casting and they were really happy with the stretch and how much more loose your foot is. The first thing you asked when they took it off was "I stand up? I do nastics??" You have absolutely missed getting to do gymnastics with Little Big so you got a couple of your handstands and splits in before they recast you. We also noticed that your entire leg is much straighter - you were having to lean to stand with both feet on the table because of the nice stretch you're getting on your knee as well!

We are still on schedule for surgery on July 19, although we did find out it will be 18 weeks total casting instead of 12 like we originally thought because there is also a 6 week post-op casting period! So six weeks pre-op on the right leg, six weeks post-op right AND pre-op left, then six weeks post-op left THEN we can start PT work on regaining leg strength and walking again.

On June 20 we had a GI appointment and he pretty much told us to keep doing what we're doing because it's obviously working! You are now eating about 1/3 of your daily calories by mouth - and you eat just about everything! There are a few things you don't like, but for the most part you "want dis and dat" and whatever else is on our plates whether you know what it is or not! We'll run labs again in December to check allergies and nutrient level, but other than that we're clear to keep pushing forward!

Your favorite is still "sumsketti" but you also keep cheerios, krispies, crackers, chicken, yogurt, pretzels, toast, apples with peanut butter, apple sauce and cookies on rotation!

You've loved having Nanny around the last two weeks (and we'll have next week as well) and Mama has greatly appreciated the help as I was gone for a week, then exhausted and trying to get caught up and ready for everyone to be scattered again next week!

You got to go to your first non-family member birthday party and LOVED seeing your friends from school! You spent the next three days telling anyone and everyone you saw about how much fun you had and what presents she got and what games you played and... Needless to say, you enjoyed it :)

That's about it for now - will try to keep things updated after next week as we move closer to surgery #1!

April and May 2017 - Getting Caught Up

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!

EYL Camp - July 10

I've been working on this post for a few days now and trying to het things finished enough to be posted, but in between EYL Camp in Kerrville and now, we went to Tulsa for the AMCSI Conference and then I flew to Texarkana for EYL Round 2 so it took a bit longer than I thought it would.

You were so much more comfortable at camp this year - you really opened up and talked to so many more people! You had a great time with Nanny and LOVED helping her drive her chair. You got pretty good at it by the end of the week, but still haven't grasped the concept of holding the controller down to keep it going. Nanny said you had some pretty jerky rides a few times!

You actually ate really well this year at camp - which is usually not the case when we're away from home! You had a blast going to the dining hall every day and helping Mama count as the participants came in, giving high fives and waving and clapping to everyone.

The biggest part of the week for us this year was June 30 - Arthrogryposis Awareness Day. We were given the chance to share our family's story and present some information about AMC and how it has effected our lives. 

The participants were given the opportunity to donate money to AMCSI as part of the Big Give activity (in the past we've collected school supplies, sports equipment for an after school program, etc.) In less than three hours, they collected almost $500 for us to bring with us to the AMCSI Conference in Tulsa! We are so blessed that there are so many people who love and support our family, and this was an amazing out pouring of their love!

We took a big group camp picture this year and got some great shots with the students holding their blue bracelets up high in support of AMC Awareness Day!

It was a great week and you definitely have some more friends and fans after those few days!

Two (or Three) Months of Updates - August

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!

2 years, 5 months - May 20

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 :)

Updates, Results, Pictures and Some Showing Off - April 30

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.

Missing Updates - Feb 17

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:

You have a sleep study March 24.

We go in April 6 for a MLB (looks at the inside of your trach and airway)

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!

25 Months and Blender Diet Update - Jan 22

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!