… before I go back to work. So, today is the last day I have to wrap up all of my Lily related projects before I have to dive back into the tsunami of work (starting with my work Inbox).  It has been almost a week since my last update, so let me fill you in on where we are at.

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Working on the orthotics.

Last Thursday night was the first night back to Schreiber since her operation. Everyone remarked at how tall she is now!  In her speech session we reviewed the successful switch access we uncovered while in the hospital, and talked about how we plan to replicate that for her at home.

In PT we stretched out a little bit and we were introduced to  new physical therapist who happens to specialize in feet!  Which careful readers of this blog will recall is currently one of the issues we are having with Lily.  After examining her feet she had a number of suggestions about how we can modify her orthotics for a more comfortable fit, so with some foam and tape she made some temporary modifications.  Once we get the fit right we can use some more permanent materials.

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non-traditional jack-o-lantern.

 

Homebound instruction has been going well.  Ms. Palmquist stops by after school and works with Lily for about 90 minutes.  They even make a few crafts!

Speaking of crafts, I have been doing a little crafting myself. As I mentioned in my previous post, I picked up parts to build some  battery interrupters. They may not look as pretty as the manufactured ones, but they get the job done.

Building things with solder!

Building things with solder!

 

 

The most challenging part of this project is finding a cheap, but compelling toy to adapt. As gadget friendly as we are I couldn’t find any toys around the house that would work, so I made a trip to a few local stores but came up empty. I think I may need to head out to the “As Seen on TV” store!

 

 

Finally, I’m sure a few of you are waiting on the edge of your seat wondering whether we decided on using a Chromebook or a Windows tablet for Lily’s switch access.

<Insert drum roll here>

And the winner is….the Acer Chromebook  CB3-111,  weighing in at just 2.43 pounds this Intel powered beauty will run all day long and at $200 it was the most cost effective solution that included a built-in kitten screen cleaner 🙂

Kitten screen cleaner!

Kitten screen cleaner!

In addition to the screen cleaner, Chrome comes with some nice accessibility options. (Spoken feedback, large mouse cursor, screen magnifier, on screen keyboard, etc)

I ordered the chromebook from Amazon and it arrived in two days.  The switches I ordered directly from the manufacturer, so I am still waiting on them to arrive.  I was hoping to have everything setup and working before I went back to work, but oh well.

Alright, I have to get moving.  Look for more updates later this week.  Signing off.

 

I know everyone got used to twice daily updates while Lily was in the hospital, but I’m afraid I cannot keep up that pace now that we are home. Once her day nurse leaves Melissa and I are on duty until 11pm at night, and that means one of us is taking care of Lily while the other is handling everything else that is needs to get done in a typical household after a busy day of work.

Lily and Daisy working hard.

Fortunately we have had a day nurse these past two days, so I have been free to follow up with the doctors,therapists and equipment vendors. Like the title states, everyone needs a new prescription. Either to change a med, add a med, restart a therapy, or to order a new piece of equipment. I’ve also been able to track down the two new “Over-The-Counter” medicines we added to the list. The last step of this process is to meet with Lily’s nurse case manager to document all of the changes – hopefully tomorrow.

Today Lily got a haircut (Thanks Jess!) and it was also the first day of Homebound instruction. (Thanks Ms. Palmquist!) Lily will be staying home for another week before she heads back to school.

In addition to getting everything sorted out with Lily since we’ve gotten home I’ve had to troubleshoot a variety of household issues. Since coming home last Friday I’ve worked on the garage door, a ceiling fan, the furnace, and the clothes washer. I’ve tracked down and ordered parts for the fan and the washer. The garage door and furnace are currently working but may need some additional TLC by “future” Todd.

This afternoon I was able to sit down, do some research, and order a switch interface and two adaptive switches to allow Lily to interact and hopefully communicate with us. I also picked up some parts to build some battery interrupters that will allow us to adapt simple battery operated devices to switch access.

I’m looking forward to getting this setup working for Lily, but I’m not sure whether we are going to use a Chromebook or a Windows tablet. More research is required.

Jess and Lily post-haircut

Signing off for now.

Well with the weekend over it is time to get back to work. The list of items I was hoping to accomplish today is going to be slightly complicated by the fact we don’t have a day nurse. (sad trombone) Miscommunication happens, but I spoke with the scheduler and we will have a day nurse the rest of the week and she is already trying to figure out how to make up the hours for us.

One of the first things I worked on when we got home was Lily’s stander. While we are still going to limit her time and angle in the stander until we can get her orthotics figured out, it is important part of her day so I adjusted it first thing.

Pain management is still a priority, she has had Tylenol around the clock since surgery, though we have been cutting back on both the dosage and frequency. I couldn’t figure out what was bothering her this morning, but then it dawned on me. Time for Tylenol!

 

 

With Lily’s weird sleep pattern this weekend she only had a single dose of her Ritalin, but I’m going to make sure she gets both doses today. I’m going to keep her awake today, so she can sleep tonight! Speaking of sleep I am back to my more typical 6 hours or less a night, so at least that is back to normal. 🙂

Fortunately Bryce is home from school today observing the sacred holiday that is Columbus Day, so he will be doing what he can to keep us awake.

 

 

Signing off from Home.

Lily is getting settled back in at home. She didn’t sleep well last night. We think it had to do with the tummy issues she’s been having. Once she did her business she fell asleep and was out for most of the morning. She rested until lunch time and then got up into her stander for a bit. We’re trying to get back into her “home” routine as much as possible. She is starting back on Ritalin today, which is a drug used for people with ADHD, but in people with brain injuries it has been shown to help with alertness. We’re hoping to see some good changes from this.

Todd and I were able to attend church today for the first time since Lily’s surgery. It had only been a few weeks since we were at church but it seemed like forever. I really missed our church family and was so glad to be back. We’re hoping that Lily will be able to come with us again within the next few weeks. We’re very grateful to the Wetzels, the Bitners, the Jennings, the Houcks, the Masts, the Weavers, Deirdre Frauman, Kathryn Fournier, and Jenine Nicholas for the yummy meals they provided for us!

Thanks for your prayers and love!

 

 

Home again, home again, jiggity jig! Todd and Lily came home today!! I am so glad they’re back! I snuggled Lily for awhile and then we caught up on Once Upon a Time together. She is now sleeping in her own bed. I think Todd is happy to be home, but needs to be “reintegrated into society” after being in the hospital/rehab with Lily for 12 or so hours a day. 😉 It is a tough gig and I remember how hard those days were when I was there with her three years ago.

We would like to thank everyone again for the cards, donations, gifts, visits and meals we received these past few weeks. We are so grateful to everyone who supported us in some way! It was a huge blessing!

I am taking Bryce to his first MMA (mixed martial arts) competition tomorrow! I’m excited to watch him compete. He really loves MMA and he’s pumped for this!

Thanks again for the love and support! xoxo

 

 

 

 

Lily's bed these last couple of weeks.

and the driving, unloading and unpacking. Lily is already in her wheelchair and Nanny took her downstairs to visit one last time in the therapy center while I wait for the nurse to bring me the final paperwork.

We look forward to getting on the road and getting home! Thanks for watching!

Signing off from KKI

 

So what did Lily do this afternoon you ask? She just hung around while we tested slings and figured out how to use the Hoyer lift.

This sling is too big and feels like a hammock.

Not everyone who works with Lily feels like picking her up by themselves, and I cannot always be around to do “Lily-ups” so we need to make sure that anyone who needs to can safely use the lift. KKI checked with the surgeon to make sure it was safe to put her in the sling (it is) and we worked together this afternoon to identify which size sling is best suited for Lily.

Oddly, the documentation only differentiates the sling sizes by how much weight they can carry, and not how tall the patient might be.

The “small” size sling can carry Lily's weight with no problem. But it's so short half of her body is hanging out of it.

In the picture, Lily is in a “large” sling. It's so big I could use it. So like Goldilocks we are still looking for a sling that fits “just right”.

Unfortunately KKI did not have a “just right” sling in stock (medium) that we could take with us, but we can use the large sling for now until we could order a more appropriately sized sling from our equipment vendor.

Afterwards LIly went downstairs and won a few rounds of Uno – that girl is a good luck charm when it comes to board and card games. 🙂 While Lily was eating I was treated to about 20 pounds of chicken, mashed potatoes, macaroni and cheese, cornbread and cookies brought out to me by friend I haven't seen in 30 years!

Together for the first time since 4th grade!

The last time all saw Suzanne was in 4th grade (so some time in the 80's), but thanks to magic of the internet and Facebook we were able to reconnect. She knows what hospital life can be like, and how good fresh food can help make things a little better, so I really appreciate her taking time out of her busy life to come visit me and meet Lily.

While recovering from my food coma I started to pack up Lily's room. Hopefully we can make a clean getaway tomorrow before lunchtime. I will try to post an update, but no guarantees. See you tomorrow.

Signing off from RMH Baltimore.

Makalya's card to Lily

Good afternoon everybody. Today is the last full of therapies at KKI. Lily is working hard as usual while I am talking with all of the therapists and doctors, finalizing protocols and prescriptions. Our plan is to be home in time for a late lunch, but who knows.
In OT we did more switch work and I talked with the therapist about our switch options. I am excited about the possibility of being able to communicate with my daughter – if even in a limited fashion for now.
In PT we just stretched out and measured her range of motion. Lily was busy down in the Therapy Center though. She played a dice game of “For Get It”, worked on a crown and created a fairy tale scene.
 
So far today, I have touched base with the doctor, the resident, the nutritionist, the social worker, and the previously mentioned occupational therapist. This afternoon I will be working with both the physical therapist and the occupational therapist as we test Lily out in a hoyer lift and go over the protocol to transfer her with the sling.
Signing off from KKI.

Unless I get an early start on the evening posts they tend to be a little short (Sorry for that). We got our sweat on this afternoon, so Lily and I put up our hair to keep it out of our eyes. We went with a double french braid for Lily, while I opted for a simple headband.

Post PT selfie - Lily was expressing her opinion about my hairband.

Because of our EEG appointment we didn’t have time to go down to the Therapy Center this afternoon, but that didn’t keep them from coming to see us. We met Elfie, our fourth therapy dog. She was a tiny dog and climbed up onto bed with Lily. She was so cute, but I think both us are ready to go home to Daisy and the cats!

Elfie chilling with Lily

When I got back to RMH I was greeted with two surprises! The first, a care package from Team Reber and a note from the office to trade in my pillows for brand new ones!

Thanks to the Rebers for the package, I cannot wait to share it with Lily tomorrow and I look forward to sleeping on fresh pillows tonight!

Tomorrow is going to be our last full day of therapies at KKI, so we are going to need to bring our “A” game!

Signing off from RMH Baltimore.

 

As we are wrapping up our time at KKI it's time to start thinking about what changes we need to get documented for our home nurses, therapists and doctor. Fortunately, I was in the room when the doctors came around to visit Lily so I was able to go over my list with them. So hopefully we will have everything we need for smooth transistion home.

We had more mixed success in OT working with the switch. I say mixed because we tried some different hand positions before going back to the one we used previously. Lily appears to have the best response when using her thumb and middle finger to press the switch. Sometimes she will even flex her wrist. The micro light switch is easiest for her to press, but probably the most difficult to position consistently.

While stretching in PT we discussed Lily's right foot. The taping does seem to be relieving some of the muscular tension, but the therapists are starting to wonder if we are also dealing with a structural issue. Her leg bone might have curved a little bit, which would explain why we are having such difficult time bring her ankle to neutral without causing skin irritation. Short term our goal is to provide support without harm her skin. When we get back home we work with her orthotist to modify her splint, and during our follow up appointment with Dr. Sponseller we will have him take a look at her leg.

Paper flowers

Down in the therapy center we tried our hand at making paper flowers. Not quite Martha Stewart, but we did all right.

On Wednesday morning, the entire team “rounds” on all of their patients. Which that means all of the patients have free time and the therapy center becomes a zoo! A fun loud crowded zoo.

Lily did okay initially but you could tell the sound was starting to overwhelm her so we went back to our room a little before noon to decompress before having lunch.

Just thought I would mention that I am writing this post up from the “temporary” Parent's Lounge. The regular lounge is a nice but claustrophobic affair, it has two bathrooms (w/ showers), lockers, microwave, fridge, ice, water, coffee, TV, computer and even a small library. They manage to cram a ton of services into a tiny space and I am thankful for all of it.

The lounge was moved temporarlily while they do some building maintenance. While the temporary location doesn't have all of the same features as the original it does have windows!

I will leave you with my current view:

Sunshine!