Medical Monday - July 31

 Well, this week we have a LOT more to update on! 

Lots of PT last week, each day a little better than the last.

Thursday, she was cleared to stand AND clear to start working on walking AND cleared to start making plans to go home! As long as nothing major happens before our appointment this Thursday, we'll be headed out first thing Saturday morning!!! The incision from her first surgery hasn't fully closed yet so we are still keeping an eye on that but it had made a lot of progress and Dr. F was happy with where it was at. 

So of course, at Friday's appointment we got busy with standing! She was a little nervous at first but absolutely rocked it...and then wanted to practice standing on Saturday and Sunday also 🥳

Today, things just kept getting better and better: SHE TOOK STEPS!

Here's looking forward to 4 more days of hard work and then HOME! This Thursday we'll do some final imaging to make sure everything looks ok, her legs are even and there are no other concerns. I'm sure we'll have some follow up appointments to come back for but we're looking forward to getting back home for awhile.

Medical Monday - July 24

Not much to update on this week since we didn't do much after Thursday, but since I didn't post the update here after our appointment:

We had some good news and some disappointing news. Her second leg is healing beautifully! She handled the bandage and stitches removal like a champ...and there were a lot of stitches! She wouldn't let me count them after I showed her the picture 😂

But - her first leg still isn't healing as much as they'd like so he isn't ready to even consider clearing her for weight bearing yet. They've adjusted the wound care protocol and will re-evaluate next week and then we'll make a plan from there. So another Thursday appointment to look forward to and hopefully get some answers from to make a moving forward / coming home plan.

She has been working on increasing the length of time she is in her new braces each day so I made a deal with her on Saturday that we would go to Chuck E Cheese and stay as long as she kept her boots on. I underestimated her dedication to that mouse; it was a costly deal for mom but one I would do over again in a heart beat for 3 hours in her braces!

Other than that, nothing else to report on - see you next week 💙

Medical Monday - July 17

 Last week was basically a long week full of PT; and in between official sessions we get to do the same stretches at the house so that's she's getting a full stretch twice a day. While it is not fun to see her in pain from the muscle tightness and new sensations, there is already a definite change in her leg movement and how quickly they adjust during each stretch.

On Thursday the surgeon's office called and wanted us to stop by after PT so he could check on a spot from Leg 1 that wasn't healing as well as he would have liked when he checked it during the second surgery. It still isn't completely closed but it had improved enough that he took the surgical dressings off and we get to change that bandage out twice a day also. Again, not her favorite thing in the world. He also decided that after the issues she had both rounds in the hospital with her lungs and heart rate doing crazy things that he didn't want to risk any complications by putting her under to remove the stitches in Leg 2 like he originally planned so we will be doing that in his office on Thursday at the post-op appointment instead of on Wednesday. They will also do x-rays at that appointment that will give them an idea of how well the bone is healing which will give us an idea of how much longer until she can start weight bearing and working on walking (aka: how much longer we'll be here!). We would appreciate your thoughts and prayers for a good report on Thursday!

In more exciting news, she got her new braces today!!! For comparison, here are her old braces and the angle of her legs:

December 2022

And here are her new, rainbow colored (of course) leopard print STRAIGHT braces:

Getting fitted

All the pretty colors

Trying to look happy about them being on 😂

It amazes me every single time that I look at her legs how much of a change there is!

I also wanted to say a huge thank you again to everyone who has sent cards or notes or letters or anything - we have gone through 128 mini-clothespins and ordered more so that we can continue our wall decorations. Since we aren't allowed to use thumbtacks or tape on the wall, I've had to get creative. We are just about out of room but will figure out how to get more up there if we need to! She loves getting mail and there have only been a handful of days since we got here that she hasn't gotten at least one something in the mail so thank you all for keeping her spirits up! 💙

I will probably post an update after the appointment on Thursday, but if I forget this will have to hold you over until next week!

Medical Monday - July 10

 Picking up from surgery day last week:

We ended up being inpatient until Saturday morning due to some of the same issues as last time: heart rate doing funny things, junky sounding lungs, etc. But Lexi also hit the point that it didn't matter what was said or done, she was finished being in the hospital. Thankfully, the team recognized that she would probably make much better progress NOT laying in the hospital bed so they let us go. We spent most of Saturday resting and getting settled back in to the house, Sunday spending time with Nanny and Grandpa, and some time with dad this morning. 

Not much of an update since it's only been a few days since the last one was a bit late. Tomorrow we start PT back up which will occupy the rest of our time here! During the second surgery the molded her legs for new braces so at some point we'll get those and start working on weight bearing and walking again. 

Here's to a good week and progress in PT!

Medical...Wednesday - July 5

 Yep, Medical Monday didn't happen because we were too busy having fun with Nanny and Grandpa! They made it in Monday afternoon just in time to come see the therapy dog agility demonstration, hangout and play some games before you were worn out and ready to rest. We took them on a tour of the Quantum House, showed them around some of the places we've established as our regulars, and took a walk where we saw 28 lizards because they are EVERYWHERE! 

Helping with the agility demonstration

Showing Grandpa around Quantum House.

So here's the update you would have gotten on Monday:

Last week went really well. Lexi had PT every day Tuesday-Friday and tolerated the stretching as well as could be expected. She had a follow up on her leg surgery along with the Pre-op appointment for her other leg on Thursday. She lucked out because Dr. Feldman told her she could keep the bandages from round 1 on until she was in the OR and they would take them off while she was under anesthesia so she wouldn't have to feel anything. Anything sticky on her skin is a huge no-go so for her, bandage changes as just as bad as the surgery itself 😧

Other than PT, we didn't have much going on. We had a slow weekend of resting and getting ready for this week. Tuesday was an off day for everyone - no therapy, no work for Mom; we went exploring with Nanny and Grandpa, found some Mexican food for lunch, a pretty waterside park and an iguana on the walking path that gave Nanny a heart attack when it ran in front of her.

Today, we were back at the hospital at 5:00 am, checked in and ready to go for round two! She did much better with pre-op, took the relaxing medicine as a nose spray and went back with no problems. Intubation went smoothly, surgery went well; they were able to match the first leg length and got the left side down to zero degrees also. From this point, it is Lexi's turn to do the hard work and commit to PT in order for the surgeries to be effective.

Thank you all for your continued prayers and support - she loves the cards she continues to get and we are thankful for all the wellwishes!

Medical Monday - June 26

 Whew - I feel like we've been here forever, but really we've only been here for 10 days! Quantum House has been absolutely perfect and I am so thankful that we were able to get in here. I could literally see the facility from our hospital room. Being this close to the hospital made it so easy to pop back and forth as I needed, grab supplies, swap out clothes, get cleaned up, etc. which made a world of difference! When they let us know we would for sure be getting discharged yesterday, I was able to go ahead and bring all of our stuff and equipment back to the House so that it was set up and ready once we got back!

We got back to the House around 1:00 yesterday; I know my "we're out of here!" posts said there would be a more detailed update later but we were both so exhausted it just never happened! Lexi went to sleep about an hour after we got back and settled in and slept pretty much until 5:30/6:00. She woke up and opened her new round of cards. We aren't allowed to hang things on the wall but we figured out a creative way to display them so she can be reminded daily of all the people praying for her and sending her well wishes! We're going to have to figure out a rotation system though because we're already out of space 😂

Anyway, we both had a decent sleep in real beds, with real blankets and real pillows. She was a little down this morning about whether she made the right decision to have this surgery because everything is really hard now; she can't sit up by herself, she can't get in and out of bed, etc. All the little things that would be hard for anyone to have stripped away from them. We would appreciate some extra prayers for her mental strength during the recovery time.

We had a follow up with Dr. A - the neurologist - this morning and he said everything on her spine looked great! She has a 1.5 inch incision in the small of her back that is healing beautifully, she's not having any issues with numbness or tingling sensations so he has no concerns. Tomorrow and Wednesday we start physical therapy which will mostly focus on her hip. As you'll remember from the awesome video I made about her surgery, they shortened her femur bone to accommodate the length difference between her leg and the tendons, but that's not an option with the hip bone so he said that will always feel a little tight for her and will require daily stretching to keep it loose and straight. Gravity will help tremendously once she is able to bear weight in her legs, but until then we have to make her stretch it out. 😩 He said it was similar to someone with perpetually tight hamstrings; before any exercise when they stretch, it's going to be sore and hurt until the muscle loosens up and relaxes.

We'll round out the week with Pre-Op for surgery #2 on Thursday and then move into the holiday weekend with out marching orders for while all of the offices are closed. It's hard to believe it's already time for the left leg but it'll be next Wednesday before we know it! I'm hoping that our inpatient stay will not be as long now that we all have a better idea of what to expect, but who knows!

Post Op Day #3

Waited to write this earlier hoping we would have great news to share, but instead we’re hoping for “maybe tomorrow” 😕 And then I just forgot to post it.

There is some good news though: she slept from about 9:30ish until almost 3:30ish with no interruptions! Then she woke up and all of the junk that had settled in her lungs decided it needed to finally start coming out. Good thing is that it’s all out now; bad thing is that it made her heart rate and respiratory rate crazy high and not really coming back down so they aren’t comfortable letting us go yet. Her blood pressure has balanced out though so that’s one box to check off! 

We got out of bed three different times today, each time for a little longer. Helps me practice transferring and her with movement. First time was a cleanup after this morning, second time we tackled the 4 day bed head, and last time we got in a dew rounds of Uno!

Everything has been steady and stable since about noon so prayers for an uneventful night and no more curve balls so we can head out tomorrow!

Thank you so much to everyone who sent cards with us or have mailed them to us. She has had a few get delivered each day and loves getting to see them all! If you'd like the address, please let me know and I'll send it to you!

Post Op Day #2 - June 23, 2023

She has done SO well today! Now that her pain level is down, the oxycontin is helping keep things much more manageable. They have started stepping back the morphine since we can’t go home with it and so far it has been tolerable.

She has been out of bed twice; longer each time. They unwrapped her leg to let it breathe and to ice it. She has had quite a bit of swelling in her foot so we are having a hard time balancing the need to keep her foot elevated, but her hip joint straight, without laying her down flat which won’t work for her lungs. SO…

We will be spending one more night here to hopefully get the swelling issue taken care of, as well as letting her heart rate and blood pressure balance out because they keep going in opposite directions which is causing her some temperature and lightheadedness issues. If those two things don't move into a more acceptable range, we will stay until Sunday.

Overnight Update - June 22

 We had a pretty rough night. As usual, your metabolism was running at full speed so you were burning through the pain meds way more quickly that they were able to give them so for the last 20-30 minutes of each dose period you were pretty uncomfortable. We also found out that oxycontin has absolutely NO impact on you, but the morphine kicked in suuuuper quick! Most of today is going to be spent working on pain management and resting. Mama got a solid 3.5 hours of sleep (not all at once) in between bouts of pain, repositioning, wound dressing checks and breathing treatments. Crossing all the fingers we both have a better night!

Dr. Feldman and his team came by and are super happy with how the surgery went. We did talk some about working on getting your leg off of the pillows they were propped up on and flat on the bed so that gravity can help your hip open up some. But he also recognized that we are fighting 9 years of that joint being bent to some degree and that it is pretty tender right now. We will start PT on Monday working on laying flat and getting the hip joint stretched out. 

Dr. Asadi also came by to check in on you and test some of the feeling in your feet and legs to make sure all of the nerves are still working. 

Overall, good progress. Everyone that has come by says today will be the hardest day but then things will start leveling out pain-wise. We'll start your feeds back at a very slow rate to make sure your system tolerates it before moving back to full feeds tonight.

Keep fighting - you're doing great!

Surgery Day #1 - Spine and Right Knee

(Posted a day late)

Whew what a day! Started (not so) bright and early at 4:15 am; we were out the door by 4:50 to drive across the hospital campus to the surgery center. Another huge blessing of being at Quantum House is that everything happens right here! Got checked in at 5:00 and taken back to pre-op pretty quickly. That’s when she revolted and refused to take the anti-anxiety medicine which resulted in 3 of us having to hold her down while they put in IV. 3 grown adults vs a 42 lb kid. She almost won 🤷‍♀️ Once the IV was in, they gave her the versed anyway and she was fine - already working on a better plan for next time.

They took her back around 7:15ish; came out around 9:00 to let me know they just got started because they had some difficulty intubating her. Whether it was from some congestion or her screaming for 20 minutes, her airway was super irritated and constricted and she had some bronchospasms.

After that, everything went really well. Spinal cord tether was taken care of with no issues; nerves functioned perfectly the entire time. He was able to close with internal sutures that will dissolve and just steri-strips on the outside so no need to do anything else back there.

Knee release went better than anticipated! We were hoping to go from 90* bend to 30-40* but he was able to get it all the way to 0* without any issues 🥳

Look at that straight leg 😍😍

After that, I got to wait two more hours while they closed until they finally let me back into recovery. We got moved to PICU pretty quickly after and she is settled in and resting. She is semi-awake but says she has no pain; they’ll keep her pretty medicated the first day and half.

She did wake up briefly and I showed her a picture if her leg. When I told her they were able to get all the way to 0* her eyes got huge and she gave me a big smile and sleepily said “my dream!!!” 😭😍😭😍

Thank you all for your prayers, thoughts, and well wishes. Please keep them coming!

Medical Monday - June 19

 Last week's post was short and simple: here we go!

This week, we have some catching up to do!

We took our time getting from Texas to Florida - 5 days of driving, swimming, playing in the sand and a few other things along the way, like feeding giraffes and visiting the Kennedy Space Center! I highly recommend the Jacksonville Zoo if you're ever in that area. We were there for almost 5 hours and barely got to see everything! 

We got to our final stopping place Friday evening around 6:00, unloaded the car and crashed! Most of Saturday was spent unpacking, settling in, making the rounds between Target, WalMart and the grocery store to get everything we needed/forgot and just trying to figure out what is what at Quantum House. Things have been amazing so far and I am so thankful that we were able to get a spot for our stay here! After a shy first couple of days, Lexi has found herself a group to hang out with and they were all bouncing between the rooms this afternoon! They have a craft/activity of some sort almost everyday, and therapy dogs come visit several times a week. Today, the fire department came by and showed the kids the engine. 

We had her Pre-Op appointment for surgery #1 this morning; everything went well, just standard medical history review, met the anesthesiologist, talked to the surgical team one more time, etc. They are going to end up doing a small release of her hip muscles after looking at the MRIs just to make sure that her legs have all the room they need for stretching down. They will call tomorrow once the surgical schedule is finalized to let us know what time we are up!

About an hour after her appointment, the office called back and said the spine specialist wants us to come back in tomorrow for a consult after reviewing her MRIs. Not sure what he saw, but would appreciate some extra thoughts/prayers/well wishes tomorrow morning for that appointment.

I'll post an update tomorrow once we find out the surgery time and will keep you all updated on Wednesday!

Medical Monday - June 5

 We are one week away from leaving! 

Left on the to-do list:

• Pack - clothes, books, games, and all of the "necessities" for our stay
• Laundry - should probably be listed first but there is a lot to get done so I'm procrastinating
• Clean refrigerator - we've been eating a lot of random things this week
• Car checkup - oil change, tire check, brake check... probably important to get done
• Party prep - we're having a Surgery Send Off party on Saturday. If you're local and want to attend let me know and I'll send you the details.

We're in a weird holding pattern where it's too soon to really be doing all of the final packing, but there isn't anything left to do until then so we're just waiting for Thursday and Friday to knock out the final items.

And then we drive. and drive. and drive. and drive some more.

Thank you for all of the gift and thoughts and prayers that you have all have sent our way. We appreciate all of the support and continued encouragement!

We got a call last week that the first surgery was moved from Tuesday to Wednesday, but other than that we are good to go - all of the specialists have given their clearance and we are ready to rock!

Medical Monday - May 29

 Well today’s post almost didn’t as we had a busier day than I thought it would be! Today’s focus is on prepping and packing, which is tedious enough for a normal trip, but trying to plan for 8 weeks and a 5 day drive has been…fun? For my Type A, over planning brain it has been a little stressful knowing that about 90% of the packing can’t actually happen until 3 or 4 days before we leave because we still need clothes, and medicines, and equipment and all that jazz. So that leaves us here:

These tubs have been on my dining room table for about 2 weeks and I have been slowly collecting items that we don’t use daily and putting them in the assigned tub…

Because of course each tub has an associated, detailed packing list 🤷‍♀️

So the plan is that these four tubs will go in the back of the car and hold everything that we don’t need on the drive to Florida. We’ll have one suitcase with travel clothes, and of course beach stuff, for the trip. So all that leaves is feeding pump and supplies, percussive vest, nebulizer and supplies, and a wheelchair to fit…somewhere. I think I have a plan but we’ll find out the day before when we load up how good my spatial skills are 😳.

Other updates:

We’ve finished appointments with GI, Pulmonology, and her pediatrician. Added some extra breathing treatments to make sure her lungs are as strong as possible before surgery (thanks to all the Central Texas allergens and constant storms blowing through we’ve had some struggles this month.) We picked up her new manual chair last Thursday (that’s the one going with us) so she’s been building up her arm strength and endurance as much as we can. This week we check ENT off the list and get her ears fitted for new hearing aid molds that will be waiting for us when we get back!

I think that’s all for now. If you didn’t get an invite for her surgery send off party and are interested please let me know. If you would like to mail a card for me to add to her box of well wishes (hoping to get one card for each day) let me know also and I’ll send you our address. And if you’d like to send her some goodies to keep her busy during recovery, I think there are still a few things on her Amazon list ❤️

Medical Monday - May 22

So this week's medical Monday post is coming to you on a Tuesday...because it's the last week of school and we're busy. But we got it done! We have also switched our countdown from weeks to days before we leave 😬

For today's post, I thought we would switch things up and let you hear from Lexi about this summer so enjoy this interview and let us know if there are any other questions you might have! Maybe she'll write some of the update posts over the summer to keep those writing skills sharp before 4th grade.

Medical Monday - May 15

 I missed getting last week's post written because we were both wiped out with allergy / sinus / fun Central Texas spring air mess. This week, I wanted to give an overall medical update since the last post that had to do with medical stuff was from about 5 years ago...and some stuff has changed since then!

So, from the top down:

Lexi still struggles with some airway issues; most recently she's completed a few sleep studies that show she is having some pretty severe sleep apnea issues when she hits REM sleep. The first was in late 2021 and it showed that she was having about 39 episodes per hour. For reference, mild apnea is 5 episodes and moderate is 10. Everyone was in agreement with trying other options before going with a CPAP mask because at the time, she was still pretty sensitive to having things on her face after her stomach surgery earlier that summer. We started with a palette expander in the roof of her mouth which went in October of 2022 and came out in March of this year. Repeat sleep study results show that it did help, but not much. She still had about 27 apnea events per hour, her oxygen dipped as low as 83%, and she was retaining quite a bit of CO2. So we are going to move forward with the CPAP machine and will hopefully get that in time for her to adjust to using it before the surgeries. There is a minimal level of concern with how she will do coming out of a long period of anesthesia and hopefully this will help head that off. (That was as of her appointment today so hot off the press!)

Sleep Study pro!

Also in 2021, she was referred back to Audiology for some concerns after her hearing test at school. We went through this before in Pre-K because her ear canals curve straight upward, the school machines were not able to get a good reading. This time, the audiologists did notice a slight low-tone hearing loss in both ears. Had an MRI done to make sure everything was working the way that it should in her inner ears; those results lead them to believe that the bones in her inner ears are slowly stiffening up, like her other joints would if she weren't so active. Unfortunately, you can't really stretch out your inner ear bones so this is something that will likely continue to progress as she ages. So, December of 2022 we added hearing aids to our daily routine. While there is no concern about speech delays or her backtracking in development, the hearing loss does cross over into vocal ranges so it is more preventative to make sure she is hearing everything she needs to and to hold off as long as possible before we potentially have to take any other steps. She has adjusted well to the hearing aids and we will continue to monitor as she grows.

Fitting first set of hearing aids

Moving down: 2021 was a fun year...I didn't post the updates on this blog, but we spent 21 days in the hospital after her stomach rapidly expanded and cut off the blood supply causing all of the tissue to die. Why? We have no idea. Her surgeon said he has only seen this happen 5 times in his entire career and the only similarity was that all of the patients previously had a G-Tube. Some had been out for years, some for months so he's not even sure what the link is there. Anyway, since her gastrectomy, she has slowly worked her way from being on a 24-hour continuous feed to dropping that down to 12 hours so she is only connected at night! We've had a few late nights in the ER to get the tube put back in when it comes out, but otherwise she has adjusted as well as possible to her main source of nutrition being through the tube again. She can still eat by mouth but now that's reserved for all of the fun stuff that she wants to eat because it tastes good. She talked to her GI doctor at last Friday's appointment about repeating some allergy testing to see if she's outgrown her dairy and egg allergies, so her options might expand some after we get those results back! 

The only other thing to report on is that she is going strong with using her walker and braces to get her legs as strong as possible before surgery this summer! At school she rotates days between walking and using her chair and we have started working on her being able to carry her own backpack when walking to help move her toward more independence and not having an aide to assist with some of those tasks. It's crazy to think that we are already looking at skills for middle school, but I'm glad we are giving her plenty of time to adjust.

This year, we have gotten two big purchases approved: the first was a new power chair and the second a manual chair that she can maneuver by herself. Power chair upgrades are available every 5 years and we made the last one last for 6 so it was time. But that also means that we had to consider everything that she may need in a chair until she turns 13! The primary focus that we looked at was moving toward independence and her being able to perform age-appropriate tasks around the house so the big push was for an elevating seat so that she can reach counters, drawers, sinks, etc. The manual chair will allow her to roll herself around during quick trips to the store, between the car and buildings, etc. to save mama's back from carrying her and give Lexi a little independence instead of having to ride in the basket. We don't usually haul her power chair when we are just going around town so this will be a huge help!

Elevating seat makes her almost as tall as mom!

If you made it this far, thanks for hanging in there! We've had to make appointments with all of her specialists so they can sign off on her having surgery so I thought it would be a good time to get everyone caught up on what's been happening and what we are looking at moving into the summer.

Medical Monday - May 1

 So it's been awhile since this blog has seen a post, but I wanted to document the upcoming surgery and planning for that in the same place as all of Lexi's other adventures so here we go!

As we prep for our trip, I will do a series of posts leading up to the surgeries each Monday that we'll call Medical Monday. For round 1, an overview of what the surgery will entail:

This is obviously a very simplified version of the surgery, but gives an idea. She will have an incision from mid-thigh to just below her knee on each side. 

On the planning side of things, we are starting to look at packing, what we will need for 8 weeks, what we can live without and how to make it fit into our car. Thanks to some very generous donations, our housing has been completely covered and we are SO thankful for that. Once we have a better idea of what all the medical expenses will be, I'm sure I'll be reaching out but until then you can still send support through Venmo and earmark it for surgery expenses. 

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!

So it’s been awhile.... July - December 2017

So I realized it had been a while since I posted, but didn’t realize exactly how long until I got on here to check... whoops!

The good thing is, nothing has really happened between July and now... just two surgeries, countless casting sessions, a new school, getting moved from special education to regular education, becoming a professional wheelchair driver, and having your 4th birthday party. Nothing important at all.

Foot surgeries - started the casting in June; every two weeks we took a trip to Houston to get the casting adjusted. Your first surgery was July 21 and it took them about two and half hours longer than planned. Not a fun waiting game. The surgery went amazingly well though and your surgeon was excited about the results. They started the casting on the second leg when they wrapped the first one after surgery so we then spent eight weeks in double casts.

The second surgery was delayed by vacation time (which I was not thrilled about) but turned out to be perfect timing or we would have been stuck in the hospital when Hurricane Harvey came through Houston! So we were delayed a little longer as they tried to get their schedule back on track and this mama was more than ready to finally get it scheduled! The second round went more quickly than the first becaus ehe knew a little more what to expect - as has been typical, your left side was tighter than your right so it took three pins to hold everything in place instead of just one.

Fast forward to November - you were suppsoed to get your post-surgical cast off the week before Thanksgiving but a double ear infection and chest cold kept us out of the ER. We spent Thanksgiving week inside doing breathing treatments, antibiotics and extra meds to get you better... and in the meantime Mama ended up with a sinus infection. Went back to Houston the week after Thanksgiving and got the cast off; we went back Today to get your final cast OFF and to get your second AFO and will go back January 3 to get your HKFOs so you can start walking again! In the meantime you have already started standing up and climbing stairs again; we also pulled out your walker last week for PT so you can start working on leg stregnth. 

That takes care of big item #1...

Number 2: SCHOOL!!!

You were so ready to start school and then we found out about a week before school that your teacher left the district AND you would not be in the class with all of your friends from last year because they had already turned four and you would be in the three-year-old class so we had no idea what would be going on! You did fantastic adjusting to a new campus, new classroom, new teacher and new friends though! So well that about a week into school your teacher called as we were getting home and asked if we could come back up to the school - they wanted to move you out of the special education / PPCD classroom and into the regular education class! 

They initally had an aide that stayed with you but as the PPCD class grew (students can begin on their third birthday so they were being added as the year went along) they pulled the aide back and you are now in there 300 minutes of your day with 70 minutes in the special ed class for “personal care” (diapers, potty time and tube feeds) as well as being pulled out for speech and motor therapy group and YOU LOVE IT! 

In fact, we had your annual review last week an dboth the special ed and general ed teachers agree they can start introducing all of the concepts for the four year old curriculum. I have no idea what they’ll do with you next year (one more year of pre-k before kinder) but we’ll cross that bridge when we get there. The other big focus is going to be on writing basics: helping you figure out how to grip the pencil, if we’ll need any adaptors, what works beat for you, etc; as well as starting to work on typing and finding areas we might to address with adaptive technology. 

So that’s where we are with school. You come home every day with a different story about a different friend. Most of your play time at home is you “teaching” your friends - numbers, letters, shapes, colors, reading books... but you’re a pretty tough task master!

Moving on: 4th Birthday Party

You don’t turn four until tomorrow but we teamed up with the two December cousins for a mega-party at Chuck E. Cheese so we wouldn’t all have to go there two weekends in a row. It was a ton of fun, played lots of games, you got to catch the tickets (which, according to you, means you are four now) and do all of things you have been talking about since April when we went for L5’s birthday party!!

The big part of your birthday this year is redoing your room! We are making some major changes to bring everything down to your level and make it all accessible to you! I’ll have to do another blog post about that (before next December hopefully!) because there will be a lot changes!

We are getting ready for all of your annual check-ups with specialists:

We see the GI doctor tomorrow; developmental pediatrician in February to do some first rounds of cognitive testing; pulmonary in April and we get to add ENT back to our rotation in January. You failed your hearing screen at school...twice. So we had to follow up with the pediatrician - which is when we found out about the ear infection mentioned earlier. Even after the double round of antibiotics and clearing out all the fluid, failed the screening (round 4...) so we went to an audiologist who said he’d rather us follow up with your ENT team since they know you and your case history. So here we go again.

That’s about all for now - although Christmas is one week away which means another post coming soon. Right now, you are taking your first full bath (not just a wipe down, sponge bath, hair wash over the sink) since July 19 and LOVING EVERY SECOND OF IT.