Paper Flowers and the Parent’s Lounge

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:




“Mani” and Taco Tuesday!

After lunch we had our afternoon PT session where Lily sat nice and tall while having her hair braided. Our spa session continued downstairs where she had her nails done. It’s nice to get some color back on her nails – her first since surgery.

While Lily was eating her dinner I went to the 5th floor and enjoyed the dinner that the hospital provides for parents. It’s nice to enjoy a meal with other parents you’ve may have seen in passing in the gym or the hallway.

We talked about Baltimore, the weather, their sports teams, and about where to find dinner around the hospital. That’s enough for tonight, more news tomorrow.

Signing off from RMH Baltimore.


Singing and dancing the morning away.

It was a real musical number this morning at KKI. We started the morning wide awake at 8:30am when I arrived. Lily was laying in bed watching the TV very intensely. During our first morning OT session we did some more switch work. It took Lily a few minutes to warm up, but as you can see in the video she is working hard to move her hand to hit the switch. Near the end of the session her response time was much quicker.

We had a break before PT, so we went down to the Therapy Center where Lily cleaned up in two games of Toss Your Cookies and we got to sing karaoke! Lily’s roommate was there so of course we sang a Michael Jackson song. (His songs go on forever!)

In PT Lily had a good stretch and I got checked off on her stretching exercises. Not only does the staff work with the patient, but they make sure the caregiver knows what they need to take care of their child once they are out of the hospital. In my case it was just a refresher, but it’s important to master the basics! The therapists work hard to make the therapy seem like play, so we also learned about a new dance called “The Dougie”

We had a group sensory class before we could break for lunch. Joanne woke Lily up with some intense smells (lemon, cinnamon and grape), rubbed her arms with ice (Brrr!) and played with a glowlight. (Annoying)

Our afternoon session is pretty light, just PT and acupuncture, but I’m sure I’ll have something to share.

Signing off from KKI.


Milo and a Massage


After getting our stretch on in PT, we went downstairs to the Therapy Center just as they were opening up a new shipment from Amazon. Inside the package was a collection of new DVDs, including the The Lego Movie! While we were watching the movie one of the therapists made me a rainbow loom bracelet. (Lily helped pick out the colors I just had to pretend I couldn't hear them.)

After dinner and getting ready for bed we had two visitors. The first visitor was Milo the dog – and this time Lily was awake! we brought the bed down low and he put his paws up on the mattress. Lily got a good look at him and he almost got Baby Jaguar! He is okay though – what's a little slobber between friends?

Later as I was getting ready to leave a massage therapist came in and gave Lily a nice relaxing massage.

Once I got back to RMH and learned that the Raven's cheerleaders squad stopped by this evening. I wish we would have gotten some advance notice on that 😉

Signing off from RMH Baltimore.




Rainbow Looms and Ritalin

Rainbow bracelet Lily made in the therapy center

Okay, we are starting the week off on the right foot – literally. We taped up her right foot this morning to help stretch the ankle out.

We compressed her feeding time down to our goal rate – still a little uncomfortable but much better than last week. I had to slow lunch down a bit today.

On the medicine front we are going to start pushing out how often she get her pain medicine to every 6 hours (as opposed to every 4 hours) She is still getting the increased Keppra, which is probably making her sleepy. She is scheduled to have follow up EEG this week to see if it is reducing her seizures. It is helping will keep the new dose, and if it doesn't appear to be doing anything we may go back to the lower dose and try something else.

Speaking of something completely different we are adding ritalin to her med list. We are going to see how it impacts her awareness. This is supposed to be a quick acting drug, so we are hoping to see results today or tomorrow.

Signing off from KKI.



Of Ironing Boards and Cannollis

Here we are in the beginning of our last week at KKI. Overall, today has a been a relatively quiet day for Lily. She was able to sleep in while Melissa and I ate breakfast at the Ronald McDonald House. When we got to KKI we had to stretch her out in bed for a couple of minutes before she was limber enough to sit in her wheelchair. It had been 17 hours since she was last out of bed!

How Lily felt first thing this morning.

At home she gets to bed around 8pm and is up about 12 hours later. Her night nurses do a great job of doing range of motion exercises as part of the morning routine and we work with her at night, so getting her into her chair has never really been as issue. In this settting the nurses do not have time to do it, and I hadn’t been thinking about it because she has been recovering from surgery.

Once we got into the chair we headed down to the Therapy Center for a little socializing. Weekends are pretty laid back down there. During the week there is a scheduled activity ever 30 minutes, but on the weekends it’s “free time”. Today we played with some play-doh, watched a game of Jenga, and started watching a Monster High DVD that Melissa brought down for Lily. Apparently Monster High is all the rage with 10 year old girls. 🙂

After we got Lily settled back into her room for her lunch, we decided to head down to Little Italy to celebrate our 18th year of marriage. We had a lovely lunch at Amiccis, and followed it up with dessert at Vaccaro’s Italian Pastry Shop Melissa doesn’t like pictures of food, but I had to take a picture of this dessert. I forget what is was called (Cannoli Go-diva maybe?) but it was delicious. Cannoli cake with two types of gelato and homemade whipped cream all of it drizzled in Godiva liqueur. Try as we might, we couldn’t finish it.

Before heading back to KKI we stopped to watch a Columbus Day Parade pass by. We had great view from the parking garage and it beat sitting in traffic because of it. 🙂

Melissa stayed until about 5pm snuggling Lily in bed while I hammered out this blog post….

Back at RMH now, no dinner this evening so I had some of the chicken and a rice casserole that Melissa brought down for me. Thanks to whoever made it!

Finally, I thought I would close this post out with our anniversary selfie. Keeping a marriage together is hard work. Especially with the additional stress we have incurred in the past 3.5 years. Thanks to all of our friends and family who have pitched in. We couldn’t have done it without you!




Visitors, Acupuncture, Mommy!

Quick weekend update everyone. Lily had a restful day. We started with some bedside occupational therapy, followed up by a solid stretching session during physical therapy. For some reason Lily was very stiff this morning. As is our usual, after PT we bopped down to the Therapy Center for some music and dancing before lunch.

While we were eating lunch we had our first visitors of the afternoon. Lily’s teacher – Ms. Palmquist and her mom, Mrs. Palmquist! It was a lovely visit – Mrs. Palmquist brought me some milk chocolate covered macadamia nuts (yum!) and Ms. Palmquist brought Lily cards from her classmates. In addition to the cards and nuts they also brought some new stuffed friends for Lily.
Lily and the Ladies Palmquist.

As they were finishing up their visit Nanny and Pop arrived! (That’s Melissa’s parents) thanks go out to them for bringing lunch.

While Melissa’s parents were visiting the Johns Hopkin’s acupuncturist stopped by and did a quick 15 minute session for Lily. His goal was to help improve the performance of her digestive system. (i.e. helping to get things moving and grooving.)

After acupuncturst left, we went downstairs to the therapy center and played games until Melissa arrived. As soon as Lily heard Melissa’s voice she turned and made eye contact with her. She sure did miss her Mom! Melissa brought more cards from home, so while Lily was getting ready for dinner she read the cards to her.

Okay, I’m beat. I’m going to end this post with a picture of Lily’s new friends.

Owly and Ben the Bear




Friday Night iPad

Quick update tonight, the batteries in my bluetooth keyboard are dying. Pooky please bring some AAs.

Lily's afternoon was pretty good. We tried to eat lunch at our “at home” rate, but we had to slow it down after about 45 minutes. Getting closer everyday, we will see how she does this weekend and then have the doctor increase the rate on Monday.

During our OT session we worked with an iPad. Joanne observed that Lily seemed to really respond to the iPad when it was right above her head which forced Lily to look upward at it. This was interesting observation, and something we will continue to work on here and hopefully at home.

During our PT session I talked with the therapist about identifying a solution for Lily right foot. She keeps turning it outward and is driving her weight through her ankle. We talked through a couple of different solutions, but we are going to start with the easiest and least invasive option first. Kinesio Tape.

The hope is we can relax the muscles that are causing her to twist her foot, which in turn will allow her to use her splints, which in turn will allow her to safely use the stander and gait trainer without fear of skin breakdown on her foot (or even damage to her ankle long term.)

Alright, that's it for tonight. Signing off from RMH Baltimore.



The Night Owl went Bowling

Remember how I was happy to see Lily awake for most of the afternoon yesterday? Well she decided to see how far she could take it and was awake until 4am!

The nurse said she was calm, just not sleepy. I've heard the same thing from Lily's night nurses, so I'm not too surprised.

Despite getting only 5 hours of sleep I managed to wake her up for her morning OT and PT sessions. More switch work, more sensory work, and more stretching.

After her workout I took her down to the therapy center just in time for a game of Left Center Right. I love dice games, but have never played this one. It was fun to play. After that game we got to “Bowl for Prizes”. Lily did pretty good bowling and we picked out Moon Sand as our prize. (It's a pretty green color with a butterfly mold built into the lid.) Before heading back upstairs for lunch we listened to some music with Lily's roommate. Lily's roommate is a HUGE Michael Jackson fan so of course we listened to some of his greatest hits.

I have to give a shout out the therapists that work down in the Therapy Center. I am amazed at their ability to coordinate activities with an ever changing group of patients who have a wide variety of physical and emotional needs. Everyone participates in each activity – even if you can't talk, in a wheelchair or on a stretcher. They have a knack for making everyone feel special and included – even me 🙂

Signing off from KKI



Crab cakes and Socks!

I had just gotten back to my room here at RMH having finished eating some scrumptious crab cakes that Phillips Seafood restaurant provided for dinner tonight, and I was wondering what I was going to write about for this evening’s update. I was seriously thinking about going into great detail about my dinner (I even took a picture of it), but I think I will just summarize it as “Awesome!”.

Instead I want to give a shout out to the Leibowitz family from Brooklyn New York! Stacey, Paul, Nathan and Charlotte sent Lily a lovely card and 3 pairs of crazy socks!

As I was opening the mail I was thinking to myself that I need to remind Melissa to bring more socks for Lily because I could only find two pair in her suitcase, so this gift could not come at a better time!

Lily had a pretty good afternoon. Once I woke her up from her lunchtime nap she stayed awake for most of her OT, PT sessions and a viewing of Monsters vs. Aliens down in the Therapy Center.

This is definite improvement from yesterday, and her tolerance for her wheelchair is also on the upswing. We spent about 3 hours out of bed before we needed a break.

Thanks again for the cards and the crazy socks, and thanks to everyone sending a cards. I cannot wait to share them with Lily!

Signing off from RMH Baltimore.