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!