Sorry for the premature post earlier, I thought I should include some words with these pictures. 🙂
The focus of today's OT workout was switch access. The therapist worked with Lily and tried to identify which switch (if any) Lily could use to make music play on the computer. She definitely was moving the fingers on her right hand on command, but it was still hard for her to actuate the switch. We did have better luck in our second session when the switch was connected to a fan. While not the primary focus of our visit it would be great if we could identify a piece of adaptive technology that Lily could use consistently.
As you can see from the picture we got Lily into the stander for the first time since her surgery. She was up to about 70 degrees, but only for about 15 minutes before getting clammy.
Another issue we need to keep our eye on is the external rotation of her right foot. Because her right foot is twisting outward, the weight of her body is being driven through her ankle bone instead of her foot. Not only is this painful, but it irritates the skin around her ankle bone (think rug burn). The therapist is being very cautious about this so we may have to forego standing until we come up with a solution.
Tonight was a nice change of pace. Instead of heading back to RMH after putting Lily to bed, I instead went out to dinner with two of my friends from Lancaster.
I had to take them back to Mission BBQ for a few reasons. One, the food was great and I wanted to sample the rest of their menu. Two, I knew how to get to it and I wouldn't have to pay to park. Three, it was near a Target and I needed to buy nail clippers for Lily and quart of oil for the van.
After a great meal and a Target run I got these guys back to a Metro station just as the cops were finishing up an arrest. 🙂 I asked them to send me a picture from the Metro as proof of life. (See above) As far as I know they made it back to PA safely. Thanks for coming down guys!
Lily was sleeping soundly this morning when I came into her room this morning. Probably the best night of sleep she has gotten in a few weeks. Our first OT session wasn’t until 9:30, so I let her sleep in a little bit. Besides she can be grumpy if woken early :-). While she was still snoozing the doctors stopped by to discuss her progress. She is still losing weight, which is expected after a surgery of this magnitude so we are going to bump her food volume up a little bit to help her gain some weight. (Her little body is burning calories to heal that incision.)
File photo of EEG
Also, after surgery there was a few days when Lily’s GI tract was taking a break (or on strike), so they had to temporarily switch all of her meds to IV. During that time I noticed an increased level of alertness when Lily was awake. I mentioned this to the doctor, and she thought maybe that Lily is not absorbing the medicine in her stomach as effectively as when it was delivered via the IV, so we are going to increase her that particular medicine and see how she does.
Because her seizures can be subtle we will be having EEGs done before and after the increase of the medicine to measure it’s effect. Our first EEG is scheduled for tomorrow, which fortunately coincides with hairwashing day. (The probe glue is so sticky!)
When not working out in the gym, Lily is down in the Therapy Center. Here is an example of just one of the crafts we have made so far.
Sorry this post was late going up but I had to fold laundry. Anyone who knows me well, knows my stance on folding laundry. I thought long and hard about just living out of the laundry basket, but in the end I did it anyway. (Not well, but it is done. )
We had Lily's steering meeting this afternoon. Basically all of the different disciplines involved in Lily's case get together and review the course of action for her time at KKI. I had a more detailed post but I deleted it by accident, so long story short we are going to be here for the next two weeks working to get Lily back into fighting shape. October 10th is our initial discharge date, but that can change due to a variety of factors.
On a final note, we had our first visitor of the animal kind. Badger the therapy dog. Lily got to rub his ears and he licked her hand.
First day of our work week and Lily is ready to go! After a good night of sleep we had a 30 minute OT session where Lily was stretched out, and I got checked off on one person transfers This makes life easier for us, we won't have to wait for a nurse to get Lily in and out of her wheelchair.
From OT we rolled right into an hour long PT session where after more stretching we sat on the edge of the table and practiced holding up our head. I also received PT's blessing to do one person transfers now.
After our workout we went downstairs to the play center and worked on a craft until it as time for lunch.
While Lily was having her lunch, I had the first of the homecooked meals that Melissa brought down for me to eat. Enchiladas and rice -Yummy!
Lily doesn't have any therapies scheduled this afternoon, but I do have her steering meeting at 3:30pm, so I am sure to have mre information to share tonight.
We received our first two pieces of mail to the Ronald McDonald House this weekend. I shared them with Lily during our visit with Melissa and Bryce. Thanks for the words of encouragement!
Today was truly a rest day for Lily, we are still working on getting her back up to her pre-op feeding schedule so each “meal” takes 4 hours to complete as opposed to an hour and half as it normally would. Because of this and few other issue she stayed in bed most of the day. That’s okay, she needs to build up her strength for the work week. Melissa took advantage of the bedtime to snuggle with Lily.
The glowing light is Lily's pulse ox monitor.
Between snuggle sessions Bryce and Melissa took me out to lunch. It was nice to get out of the hospital environment for an hour or two. We ate at a barbeque joint called Mission BBQ Bryce described it as “possibly the most ‘America’ place we have ever been.” Their food and service was great, as is their cause. Definitely 4 stars in the Higgins travel guide.
Reggie the Hedgie (maybe)
In addition to the mail we recieved at RMH, Melissa brought a lovely gift handcrafted by a co-worker. We haven’t settled on a name yet, but my vote is for “Reggie the Hedgie”. It also came with a matching scarf for Lily. Thanks Monika!
Alright, tomorrow is a full day of therapy, plus Lily’s steering meeting so I’m sure I will have more to share tomorrow.
Lily started her day with an 8:30am PT session – she was in the gym working out before I even made it over to KKI!
In the picture she is learning the importance of stretching out her hamstrings with her new friend Brittany!
After PT we spent sometime downstairs watching the movie Tangled, but we headed back to bed the moment she started to feel a little clammy. (She had been in her chair for about an hour at that point.)
A short rest in bed, then it was time for OT. She spent most of the session trying out a bunch of different smells.
After OT we had some visitors! Mimi and Grandpa (my parents) came down to visit us.
While Lily ate her lunch,my parents and I walked over to Johns Hopkins for a little food of our own.
After their visit Lily and I just bummed around until dinner. No big plans on the agenda tonight other than washing our hair.
Since I was a little late getting this out, and it’s a slow news day I think this will be our only update today. If something important occurs I will let you know. Also, thanks for reading and following Lily’s progress. We enjoy seeing how many people are reading her story, and I enjoy reading the comments to Lily – so feel free to leave us a comment!
After lunch Lily had PT session and then went downstairs for a round of play therapy. (I think she might have whipped together a present for mommy!) While Lily was crafting away I met with our social worker.
Everyone who comes to KKI is assigned a social worker who acts as a liaison between the patient’s family and the medical staff. After dealing with some of the same doctors for the past 3 years I feel comfortable interacting with them directly, but it’s always nice to have someone advocating for you who is also familiar with all the ins and outs of the institution.
Afterwards I collected Lily and went back to her room to get her our of her chair. Two hours might be pushing it right now as her skin was clammy to the touch, but I got her a comfortable in bed and the nurse gave her some Tylenol and she settled down.
Saturday is like a half day when it comes to the therapy schedule and Sunday is completely unscheduled, but we are expecting a few visitors so that should work out nicely.
She sat up on the edge of her bed, got into her wheelchair and went for her initial PT and OT evaluations to get her “starting numbers”.
After that we went downstairs to the therapy center and played a game of Spongebob Yahtzee and kicked a huge beach ball around. All before lunch!
Because of their expertise with spinal injuries KKI has very specific protocols for dealing with patients like Lily. One of them is all transfers require 2 people, so instead of just doing a “Lily-up” we need two people to get her in and out of her wheelchair.
Speaking of her wheelchair, Mr. Mike (as he is known) adjusted the back of her wheelchair to better fit her new height – we might need to make a few more tweaks but it looks a heck of a lot better than before.
That’s all for now, I just finished lunch and need to head back to Lily’s room for her afternoon PT session. Coming to you from KKI
Quick update tonight. Lily is resting in her room at KKI. Hopefully she will have a good night of rest since we will be starting with a PT evaluation at 8:30 sharp. I won’t know her schedule beyond that until tomorrow morning.
I just got back to RMH so I am going to grab some food and go to bed.
I thought I would share a hyperlapse recording of our walk between JHH and Hopkins. It was a crazy ride! Lily is resting comfortably in bed while I work with the staff of KKI to get Lily settled. More later. Signing off from Kennedy Krieger (finally)!