Displaying 11 - 20 of 40 entries.

Weekend Update

  • Posted on January 23, 2012 at 10:18 pm

So on Saturday morning we were told that Nica’s Leave Of Absence had gone through and we could therefore take her of campus for a few hours. This was the first time she’s been outside since January 5th. It was the day of the Gasparilla kids parade but we didn’t feel like sitting crowded outside. For those that don’t know, Gasparilla  is when Tampa Florida celebrates it’s history with José Gaspar, known by his nickname Gasparilla. He lived c. 1756 – 1821, and was a purported Spanish pirate, the “last of the Buccaneers,” who is claimed to have raided the west coast of Florida during the late 18th and early 19th centuries. His legend is celebrated every year in Tampa with the Gasparilla Pirate Festival. Next weekend is the grown ups Gaspirilla celebration. They sail into port with a recreation of an old pirate ship with full rigging and everything. It really is kind of cool. But not so cool as to get us to just sit and suffer claustrophobia. Instead, we decided to go to MOSI. We all had a great time and it gave Nica a chance to blow off some steam and just have fun. She played an assortment of musical instruments but her favorite by far was the drum set. Check out the video at the bottom for some clips. She also played in the various grocery and restaurant play areas. The best was when we got her to crawl through some of the “cave” sections. I know I recorded that too because I had to shoot using my camcorders night vision just to see her in there and make sure she wasn’t stuck. However, I can’t seem to find the video any where. Tammy said we’ll have to go back and do it again. We went through most of the museum and they had to kick us out right in the middle of Nica playing a life size version of Operation. The buzzer sounded almost constantly but Nica was convinced she was a great surgeon. I told her with a bit more of OT she probably could be.

By the time we got back to the hospital, it was time for Nica’s bath and nearly bedtime as well. We said goodnight to Mommy, sissy, and Ms Megan knowing we would see them in the morning. Morning came and brought with it OT with a new person we hadn’t met before. She was very nice but I can’t remember her name. Nica couldn’t stop yawning all morning the poor girl just couldn’t get enough sleep. Once she had her morning yogurt and chocolate milk she starting to liven up. A good thing too, since it was about to be a busy day. We’d known that Grandpa and Tutu were thinking about coming over on Sunday, we’d just found out that Grandma and Papa were now coming today as well, and we’d found out on Saturday that Grandpa Joe and Grandma Kathy were coming out today also. With that kind of a line up you just know that Nica’s in for a good time.

She had so much fun playing with everyone. It was nice that every ones arrivals and departures were staggered a bit. It gave Nica time with every body and she didn’t get the shock of everyone leaving at once. Once Grandparents day was over we had a little bit of time left before we had to say goodbye to Mommy and Anne. It was great while they were here but it just went by way to fast this weekend.

I think they left around 5 or 5:30 and by 6:30 Nica had passed out. Curiously though, at 7:10 she woke up screaming and crying for a yummy banana. I have no idea why but she wouldn’t let it go. I told her nurse that I was going down to the cafeteria to see what I could find and to please keep an eye on her. I hustled and made it back in under 15 minutes, which is good if you know how far the caf is from our room. I was armed with 2 bananas and 2 strawberry yogurts. I just had a feeling about the yogurt and as it turns out, I was right. Once she finished her yummy banana, she asked for yogurt. She downed that and 4oz of juice and then went back to sleep. Next, it was my turn.

Beat Drums, Beat Drums! video

TGIF

  • Posted on January 20, 2012 at 11:23 pm

Not one of Nica’s better days. Last week Katie said that normally at the end of a full week of therapy, the kids are just done. Nica proved this today. She may not have gone right to sleep last night but when she finally did, at around 10:30pm, she slept well all night long. Unfortunately, one of the neurosurgeons tried to remove her bandage and look at her back at 7am. For a surgeon, that’s not the smartest moves. He finally decided to just come back later but it had already put Nica in a bad mood and robbed her of an extra hour of sleep. Yeah!

This morning we switched things up a bit by starting with OT. It was Ms Lindsay today, and we decided to take the Imaginets play set, that Nica got from Greg and Abby, to play with. It’s been a big hit with PT, OT, and the rehab nurses too. Several staff members made a point to write down the name of it. I’m curious how many sets are going to eat up in the pediatric rehab gym. So, kudos to Uncle Greg and Auntie Abby.

Once OT was over we actually had a 1 hour break before it was time for PT. We used the time wisely by going back to the room and watching more Goofy cartoons. When Katie came to get us for PT, she told me that Custom Mobility, the company that sells us Nica’s adaptive equipment, was coming out to finally adjust Nica’s wheelchair. This has been an argument with us and another patient all week. CM was refusing to come out and do the adjustments because they said that Nica hadn’t sufficiently healed from the surgery. Like they’re all Doctors over there. Anyhow, after going through all the proper channels via about 8 phone calls from 3 different people, Dr Kornberg was getting annoyed and he called the president of the company directly. They then had a tech here is less than 24 hours. It seems heading one the best rehab departments in the state does indeed come with certain benefits. You go Doc! Actually that story isn’t entirely true. Not 30 minutes after the first tech had finished, we got a call from a second tech who was trying to come out and do the same job. Somebody must have lit one heck of a fire.

While the first tech was working on Nica’s chair we played this cute Duck, Duck, Goose board game that Nica has taken a liking to. She did some decent standing but her endurance was wearing down. She did some push ups on the Pilates ball after that until it was time to try out the wheelchair adjustments. Then we were out of the chair for a few minutes then back in. This went on for longer than Nica was willing to tolerate but eventually the tech finished up and  ordered some replacement parts for later, and we left for our room.

Nica begged for her chicken she was so hungry. Sadly, she was so tired again that she wouldn’t eat it. She just sat in her chair and screamed. I started to take her out of her chair and she said she was all done screaming and that she wanted her chicken. We tried it again and got the same results so it was bed time. That’s when I saw a side of Nica I had never seen before. She began snorting and scream and thrashing and wriggling around the bed looking for a way off of it. I had thoughts of a horror film with a possessed child. It was a bit scary. By the grace of God it only lasted about 3 minutes before she was out like a light and taking what would become a 2 1/2 hour nap. She woke up crying a bit but soon got over it and asked for her chicken again. She ate some of it but then wanted to go have some fun.

We got to the play room for the tail end of 2 parties. One was the end of chemo party and another was a birthday party for our neighbor. It was a bit crowded and messy but Nica got some doll house time in. When they began closing the play room Nica felt she needed more dollhouse time. Steph, one of the Child Life specialists let us barrow a smaller dollhouse for the weekend and left a suprise for Nica on her bed. It was a new singing Belle doll. She couldn’t wait to open it and played with the rest of the evening.

Mommy and Anne arrived right after bath time with 30 minutes of visiting hours left. Nica really missed Mommy and sissy. Mommy brought Nica’s new Leapster LeapPad, as it had just arrived at the house yesterday. Nica’s OT is really looking forward to trying it out next week for some fine motor work. I suspect it may cross over into some of her other therapies as well, but that’s why she got. Somehow we forgot the batteries so I’m going to pull some out of my camera flash so that I can get the LeapPad set up and then we can get new batteries in the morning when the gift shop opens. So for now, I bid thee good day.

Rough start.

  • Posted on January 19, 2012 at 9:39 pm

So I’m not sure what they were doing in the hospital last night but it sure was noisy. Several loud bangs managed to wake Nica up at around 3am and again around 4 and maybe 5. She never went back to a restful sleep and I knew we were going to have a difficult day as a result. She also had a hard time going to sleep as she kept screaming and crying for Papa, that’s my dad. She hasn’t seen him in a long time and she was having some real withdrawal issues about it.

Our 8am therapy session never happened. I think they got their wires crossed somewhere. That was OK though because the plan was to work on dressing and feeding and since breakfast didn’t show up until after 8am it worked out. They tell you that breakfast should arrive around 7 or 7:30. It gets here later and later. each day. Nica barely had time to eat a yogurt this morning before it was time for PT. We did get to see Uncle Pastor Tim bright and early at about 7:40am though. It was a nice surprise. Maybe he could have brought breakfast if we had known how the morning was going to go. Tim figured since he was out checking on some new babies and their mothers he might as well stop by and say hi.

Katie was at Nica’s staffing this morning so we had Ms Alexis for PT. The walking didn’t go so well. Nica wasn’t having it and she screamed so loud that the nurses on the floor were getting complaints from patients. Alexis said, tough we’re not doing anything wrong Nica is not happy and she’s telling everyone. It’s part of the behavior problems Nica has always had. Anyone who has heard Nica scream full voice knows how loud she can be, but to disturb a whole floor or at least a whole wing, now that’s my girl. We quickly moved on to the tricycle and things improved. I did remember about the redness I had seen in her upper thigh/diaper area and figured that that may be causing some of her walking problems. It also dawned on me that Dr. Kornburg cut her meds again. Instead of the 30mg/day of baclafen that she was taking when she got here, as of last night she is now down to 10mg/day. So far, we haven’t noticed any muscle tone issues due to her reduced dose but we’ll need a few days to see how this really affects her. Also, we’ve been able to reduce her daily Miralax from 1.5 tsp to .75 tsp per day. I’m glad we can pull back on so much stuff thanks to the operation.

In keeping with the spirit of exhaustion brought on by our interrupted sleep, we did a full morning, PT, ST, and OT all back to back. Lunch was also an hour late arriving which was OK because it got to our room 5 minutes after we did and a hot meal around here is a novelty. Sadly, Nica was just to tired to eat it. She made it through one chicken nugget before she was nodding off. I put her to bed for her nap and she was still sleeping when it was time for afternoon PT. Katie was about to just let her sleep rather than start afternoon therapy, but she no sooner closed the door to leave and Nica woke up. It was great timing too, because Bonnie, the Nurse who helps head the rehab team and hands out all the chocolate, was right outside the door and when she heard Nica crying she poked her head right after Katie came back. It gave us all a chance to take a good look at Nica’s red spot. We all agreed it was starting to look really raw. It seems some of Nica’s equipment is rubbing her the wrong way and causing some bad chafing where you really don’t want it. Bonnie put in an order for some barrier cream and we are now using that with every diaper change in hopes of helping the skin heal and help Nica feel better.

Armed with this knowledge of her chafing, we stayed away from walking in the afternoon and instead worked on standing. That wasn’t the greatest success either as it seems Nica’s back may just be getting tired and sore. She’s never worked so in all her life and I’ve rarely worked as hard as she does. On the surface, it’s almost cruel how hard they push these kids when they’re here, but it’s called rehab not camp and it’s going to take a lot more hard work before we can think about slowing down. In the staffing this morning they said that Nica is doing great but that at this point they’re looking at 3-4 more weeks in here. I didn’t get the full debriefing about the meeting yet but Bonnie said she will sit down with me to discussed the teams conclusions and suggestions.

Towards the end of afternoon PT Grandpa Joe snuck in for some much needed play time, I’m just not sure who needed it more. The two of them played dolls for a while before moving to the work bench and then back to dolls again. Stephanie and Kelly, the ladies who run the Child Life Center had to kick us out at 5pm when it was time for them to go home. They said they’d see us tomorrow afternoon as they are hosting an end of chemo party for another patient on the floor. We headed back to room where we watched some classic Disney cartoons and decided not to eat the oranges we asked for before Dinner arrived an hour late. I’m beginning to wonder if someone played a joke and reset the clocks in the kitchen. Grandpa Joe had to go home and it was dinner for two. Nica finally got to eat and stayed awake long enough to do so, but just barely. She made sure she was going to get a bath too as she ate this evening. She got food everywhere and yet all that food eventually made it into her mouth, even if it took the long way to get there. Bath time went well even though she pooped in the tub again. I hope this doesn’t become a regular thing, no pun intended. Tonight’s meds came in a timely manner and we had lights out by 8:15pm. Let’s hope that tonight is quieter than last night.

 

1 week down

  • Posted on January 19, 2012 at 7:01 pm

Well we’ve completed a full week of therapy and things are looking good. The goal for this week is to have Nica walking 25ft with assistance. I’m not sure we’ll hit that mark but we can sure try for it. We are having some problems keeping Nica on track. She wants to quit after only a few steps. I know she can do more but it’s keeping her motivated that we need to figure out. The Neuropsychologist sat in on this mornings PT. She felt like Katie and I, not sure which direction to head in with Nica. Is it better with me there or out of the room? She’s decided she’ll sit in on a couple more sessions and go from there. I’m starting to notice some redness on Nica’s inner right thigh. I need to have one of the nurses take a look at it.

Despite all the troubles, today held some of the best footsteps we’ve seen from Nica yet. We lined the hallway with musical instruments and she had to walk from one to the next in order to play them. It worked well when she wasn’t pitching a fit. She’s really taken a liking to playing the triangle. That’s my girl. The star of the show. She and Vari often compete for the piano, but today he wanted to come and join our tea party. It was very nice to have a fresh face at the table. He poured out the tea for everyone while Nica handed out the petits fours. It was generally agreed that it was an excellent for a tea party and a fine time was had by all who attended.

In the evening bath time was so nice that we had it twice following Nica’s pooping in the tub. Hey, at least she pooped. I told the nurses about what she had done as they tend to ask several times a day about Nica’s passages. I also told them that I didn’t fish it out and weigh it as  is customary but instead retrieved it and flushed it. They said that was fine and charted it as such. Once we were super clean, a Dr Riggs, from PICU, came down to take a good look at Nica’s back. He was pleased with how it was looking and ordered that we continue the dressing and antibiotics. A couple of hours later we discovered that the pediatric floor ran out of her antibiotics and had to send a request to the pharmacy for some more. I was assured that it would only take 10-15 minutes to get here but it was an hour later and an hour past Nica’s bed time before it arrived. This really stinks considering she’s scheduled for therapy an hour earlier tomorrow. Oh well. what can you do.

 

Zoosday

  • Posted on January 19, 2012 at 5:19 pm

Tuesday started out like normal, PT, OT, and now the introduction of Speech Therapy. It all went well. There was some better focus today with no one to play with. We got to have our first overlapping session with a 3 year boy, Vari, who just had the same surgery as Nica but at St. Joseph’s hospital. He’s really cute and looks like he could be Will Smith’s kid. He’s 1 month older than Nica so they’re in the same spot developmentally. There are some differences in the way the CP has manifested in each of them. He’s really sweet and he’s a lot smaller than Nica. Eileen Summers, Nica’s former PT, always told us that CP kids usually look smaller or emaciated because of the calories they burn through just trying to move. Seeing him makes me think that Nica could have ended up that way. I’m glad she was a good eater.

After our morning session Nica was just exhausted. She had a light lunch and was starting to nod off. I almost just let her go to sleep but I thought better of it and I let her make the decision, go to sleep or go to the zoo. Guess which one the 3 year old chose. Within minutes we were meeting up with Vari and some of the other rehab kids for a short trip to Lowry Park Zoo. We got to ride on a new bus for our trip and Nica sang “It’s A Small World” most of the way there with a few Yeahs thrown in whenever went over a good bump or sharp turn.

The first animal we saw was called a Tapir but Nica felt Panda Pig would make a much better name. Next came the orangutans and they were fairly active but not as active as the simian monkeys who were just swinging and jumping like crazy. Nica spotted an actual swing in the paddock and begged and cried to go swing on it with the monkeys. I explained to her that it wasn’t the best idea and that if we found a swing we could actually get to we’d try it out. We went on to see some antelope, elephants, giraffes, zebras, a big python, tortoises, and more before we headed back towards the bus. On the way back, we tried to take a ride on the merry-go-round. Nica really wanted to ride on a zebra. Unfortunately a child riding right before it was our turn managed to get sick all over the ride and we didn’t have time to wait for them to clean it up. I told her that when we eventually get out of here that we could go to the Magic Kingdom and ride that merry-go-round all she wanted.

After we boarded the bus and got Nica’s chair strapped down we noticed that her favorite Ariel doll, the one she took into surgery, was missing. Thanks to the awesomeness of Ms. Katie and Mr Josh; however, Ariel was soon recovered from the zoo, where she was still watching the animals. Once she was returned to Nica she was immediately put to work as a pillow prior to passing out. What a fun day we had. I wish I could’ve gotten some pictures but I was usually holding Nica and pictures would have been difficult at best. They try for an outing every Tuesday so maybe we can get some pictures from the next one.

That evening we got our bath and took a look at Nica’s back. It’s finally getting better. It looks nicer each night. The first time we saw it with the scab off was when then infection was trying to set in and the incision was slightly swollen and red. There was a canal in her back and it creeped me out. Now it’s nice enough that I don’t mind seeing it and it no longer seems to hurt her when I wash it. Another week of this and it should start looking great.

Healing up

15 minutes of fame

  • Posted on January 19, 2012 at 4:26 pm

Monday brought with it some great work in therapy. It was great to have Mommy and Anne to play with while working, even if it was also a bit distracting. After our morning session, we went to the playroom, affectionately referred to as the Alvin room due to the chipmunk standees that surround it. We had just started playing when some athletes from the University of Tampa showed up for some play time too. They brought stuffed animals, games, and other toys to hand out to all the kids. Nica got a new bear, and Anne got a new puppy. This was a great excuse to postpone afternoon PT and get in some press time for everyone. Lots of pictures were taken of all the kids in the room with the athletes, but only one photo ended up on the Bay News 9 website, Anne and Nica with some girls from the women’s soccer team. Alas, all things must end, and play time is no different. Ms. Katie came to get us for PT and a treat. We did some work in the standing rig and discovered the awe and wonder of the bubble machine. After therapy it was back to the “Alvin Room” for some quick down time before dinner.

We opted to try the cafeteria for dinner. Mommy had the MLK Jr commemorative meal, Memphis brisket with all the fixins. When dinner was over, it was time to say goodbye to Mommy and Anne for a few days. We weren’t happy about it but we knew they would be back in a few short days.

Nica-1st-Soccer-Practice video                         Bubble-Shower video

It’s been so busy.

  • Posted on January 19, 2012 at 1:17 pm

So Sunday turned out to be very busy. We did our therapy and started in on lunch when the first of many visitors arrived. Uncle Greg, Aunt Abby, Sam, and Peter were the first to arrive. They were soon followed by Allison Reynolds and her friend Erin, and Dave and Tracy Zielinski. It was a lot of fun to play with everyone. Anne and Nica got to open some presents, and Nica sat in the playhouse for a bit. She loved it and asks all the time to go back in. Nica asked what was Sam and Peter doing. I told her that they were playing video games and she asked if she could play. So Nica got to mess with an XBOX controller for a while and had a great time. Before we knew it, it was time for everyone to start heading home. We had a great time and enjoyed seeing friends and family. Monday it’s back to work to show off for Mommy and Anne, we hope.

Taking it easy.

  • Posted on January 14, 2012 at 9:48 pm

So today was fairly casual. We started with a light PT session doing some sit to stand and tried some more walking today, but Nica just wasn’t feeling it. Anne joined us in therapy today, having woken up early at the Ronald McDonald House(RMH) so she could come see her sister. Therapy was over by 9 or maybe 9:30 and the rest of the day was ours except for medicine times and seeing the doctor. Doctor Kornburg checked in early to look at Nica’s back. He’s not happy with how it looks but said that it can take 2 to 3 days of antibiotics in this case Keflex and Bacitracin, to see any improvement. One thing is for sure, she doesn’t want you going near it. This morning it was very sensitive and painful. Some Codine took care of the problem until about 4:30 tonight, when she expressed some discomfort during a diaper change. right now it’s really red and a bit puffy along the edges of the incision. Using the cream has helped the scab to start to come away and you can get a good look at her back. Hopefully it will start to feel better tomorrow.

We got a nice surprise today when we heard the sounds of air hockey being played down the hall. That meant the Child Life Center was open and we could go where all the good toys are. Anne and Nica played with the dollhouse together, as well as the play kitchen and super market check out. Nica ate some lunch in there before it closed at 1pm and by then it was nap time.

Mommy, sissy, and Miss Megan went foraging for food while I stayed with Nica for her nap. it was the first nap she got to take since we arrived at TGH and she made it count for about 2 1/2 hours. Nica woke up crying for Mommy who was just around the corner and came to hold Nica for a bit. That was when she also got her second does of codine and other meds before going to the family room for some more play time. After a while, ever one was getting hungry and we opted to go to the hospital cafeteria rather than Tammy and Anne going to eat at RMH so that we could all have more time together. Before we knew it, our day was over. It was time for Nica’s evening round of meds and bed time was quickly approaching for both girls. It’s nice knowing the Mommy and Anne are just across the street and will be back in the morning.

Tomorrow brings with it a short OT session followed by lots of visitors. So, we’d better get out rest.

Tour de Nica

  • Posted on January 13, 2012 at 10:25 pm

Another amazing day with the team at TGH CMC. Nica got to go on her first bike ride, well trike ride actually but what a mile stone. She didn’t actually push the pedals all the but she did get a few pushes in there. the simple fact that she kept her feet on the pedals so well is amazing. Before, the scissoring was so bad you could barely get her on a bike let alone leave her there for so long. I had to post a video for this one. It’s a bit long, almost 10 minutes, but I am just so proud that I couldn’t edit it down any further. Not all of her dialog was audible but I tried to keep all that was. You could see the fun on her face. Even when that sessions was over all she wanted to do was get back on that trike, all day long. She did some more walking as well and this time I got some steps on video. She would’ve done better at walking but that came after the riding and she was distracted.

Following PT came OT. That went well as usual. She slid some more rings across the pole. She still wants to turn her wrist the wrong way when she grabs them though. Next came some piano playing and a diaper leak that paused OT. A quick change back in the room and it was back to work. She did really well with a shapes puzzle, only having trouble placing the diamond and the pentagon. Now it was time for crayons. She practiced drawing straight lines, down and up, and then circles.

One of the neurosurgeons did stop by during OT and looked at Nica’s back. He was a little concerned about the continued drainage and changing appeance. Nica was concerned that he kept poking and squeezing her incision and she made sure everyone was aware of it. He took some photos and sent them to Dr Storrs, who performed the operation. He decided to err on the side of caution and start her on some strong antibiotics that targets the skin as well as an antibiotic cream and bandages. She is showing more redness on her back and some slight puffiness as well. Her temp is also slightly elevated, 99.3 I think. If after a few days of meds she’s not looking better then they may have to go ahead and stitch her up a bit rather than risk her back reopening.

She actually took a 30 minute nap today before her afternoon PT. Afternoon was a little easier than morning PT. It mostly consisted of sit to stand exercises while reading a Dora musical adventure book and pushing its buttons. We rounded the work day out with a little more walking.

Rather than finishing her nap Nica and I, well mostly Nica, felt it was important to spend some quality time with the big dollhouse in the playroom. There are only 2 dolls, a blonde little girl that she calls Rapunzel and the girls dad who has been recast in the role of Flynn Rider. The lack of a chameleon in the playroom forced us to cast a brachiosaurus for the role of Pascal. All characters had a grand time taking baths and climbing stairs. Unfortunately, one too many falls on Flynn’s part required Nica to take him over to the Black & Decker work bench for some medical attention that involved a drill press, hammer, wood chisel, pipe wrench, miter box, and a chop saw. Needless to say, with such outstanding medical attention Flynn return to doll house where it is believed he is still recovering. The playroom doesn’t open again until Monday so he should fine.

The highlight of our day was visiting with Anne and Grandma. Unfortunately, Mommy got stuck working late and she won’t be here until in the morning. Grandma and Anne are staying in the Ronald McDonald house across from the hospital. This one is even nicer looking than the west house at ACH. This one also has SleepNumber beds but I was told that these will actually hold air. Lets hope so. When Mommy gets here in the morning Grandma is going to finally get to go to her house for the first time since before the operation. It’s just in time, too. Pappa is getting a cold and really misses seeing Grandma.

On the weekends therapy is relaxed a bit, it still starts early but the sessions are shorter. We can’t really go anywhere tomorrow, as Dr Kornburg wants to keep an eye on Nica’s back. He’s on call this weekend and will hanging around the hospital. Between that and atibiotics 4 times a day now on top of her other meds there’s not much point in trying to escape for any length of time. Still just having Mommy and Anne here all weekend will be more than enough.

Nica-1st-Bike-Ride-video                             Nica-walks-1-13-12 video

Nica-1st-Bike-Ride different format          Nica-walks-1-13-12 different format

Hitting our stride.

  • Posted on January 12, 2012 at 10:07 pm

Well I must say, the staff here really is great. I slept in a bed for the first time in 8 days and I feel a little better. We got to do some actual walking this morning in a Snugseat walker. It was amazing to see her take steps without scissoring. We also got a visit from the therapy dogs, Blake a yellow lab, Blaze a retired greyhound, and Chick-let a chihuahua. Chick-let was wearing a navy dress with white polka dots, and a rhinestone belt with a big bejeweled pink heart buckle. It was very nice to make so many new furry friends. We then got to work with the OT today, Kim I think. She just kept commenting how beautiful Nica is. She was also impressed by her abilities and her personality. We did some block staking, ring sliding, and some bead threading. Kim suspects Nica has a bright future as a bead threader.

Next it was time for PT. That started with some stretching by putting foam shapes in the water and putting them up on a mirror. Katie, the PT then decided she wanted to see how Nica did in a walker. Josh the rehab assistant, got the walker and set it up for Nica. We went down the hall a little bit and back. Then it was time to get ready for our family meeting.

Family meetings are scheduled every Thursday, but generally only happen around admission time unless there’s something that needs to be discussed with the team. That took about an 30 minutes and started with ogling over Nica, Nica asking for and getting her own ID badge, and then getting a retractable lead to put it on. Next we set our short term goals for therapy and penciled in the 2-6 week stay. The duration of our stay will depend largely on how well Nica is responding to therapy.

Housekeeping got Nica a get well card and a purple pinwheel flower. Someone else gave her a Lion King quilt. I’m not sure who it was because it was dropped off while we were in the meeting. Bonnie, our nurse practitioner, went to the store and bought us the diapers Nica needed since the hospital doesn’t stock diapers larger the a size 4. She also bought Nica a Ni Hao Kai Lan outfit and a little polka dot outfit with a big bow on it. They’re both really cute. For me she decided to get a six pack of Coke and some Doritos. I thought it was a very sweet gesture on her part and I was sure to thank her. Bonnie is also a dangerous woman. Every time I meet with her she gives me various chocolates like Almond Joys and Butterfingers.

Our afternoon consisted of a PB&J lunch we barely ate, a nap we never actually took, and more PT. I got to show Katie Nica’s last gait trainer video so that she could see where Nica used to be, ability wise. She was pleased to see the mobility Nica had developed in spite of the spasticity. Once afternoon therapy was over Nica got a surprise visit from Grandpa Joe. It was great to have some company and Nica loved playing with Grandpa. He stayed through dinner and bath time and beyond. Nica didn’t want to see him go. She had so much fun sitting with Grandpa and playing dolls and farm animals.

By the end of the day Nica was just tired. But we weren’t quite done. Dr Kornburg stopped by and took a look and Nica and asked how things were going. He took a look at her wound because it’s still leaking a bit. she leaves stripes every time she lays down. He went ahead and order a dry bandage be put on and he said he was going to see if one of the neurosurgeons could look at it tomorrow. He’s not worried about it too much since there’s no puss or blood leakage, just some yellowish drainage. I’m assured the drainage is normal but it’s been a week and we’re still seeing it. Dr Kornburg just wants some affirmation from a neurosurgeon that everything is still OK.

Nica-PT-Day-01 video