You are currently browsing the archives for January 2012.
Displaying 1 - 10 of 32 entries.

Ketchup

  • Posted on January 29, 2012 at 8:16 pm

It’s been a lot business as usual with a few interesting points along the way, so let’s play catch up. On Thursday, Dr Kornberg decided to take Nica completely off of her muscle relaxers and see what happens. Considering how little she had been on by that point, I’m not surprised. I think that’s contributing to the constipation issue we’re now having though. Nica was going on her own OK for a few days. In fact pooping in the tub was starting to become commonplace. But then she stopped going for a couple of days. She began having some trouble passing so we  had to give her a suppository. Now we know that without her baclafen she needs about half of the Miralax she used to take. Like Tammy said it’s much nicer to have her on a mild non addictive and fairly safe laxative than to keep her on a heavy narcotic.

On the therapy front in her staffing this week it was noted that she didn’t really progress much in OT or ST, but she did show continued growth in PT. Her trunk is getting stronger and she showing a little more control. They said that perhaps they’d send her home on Wednesday but maybe not. We’ll continue to discuss it more this week. Bonnie said that in almost every case, when the child goes home, they tend to make great leaps in their abilities, but Tammy and I are of the opinion that there’s more that she can get from here. Once she leaves here, therapy will become less frequent and less intense. As miserable as we all are being apart, we just don’t want to leave here to soon. It’s proving to be a complicated issue that changes frequently, and we just want to make the right decision.

The social worker has been in talks with All Children’s, Lakeland for outpatient rehab. Dr Kornberg thinks Nica might be a good candidate for the therasuit. He knows that ACH offers it for outpatient in Brandon but he’s not sure about the Lakeland clinic. From our house, Brandon isn’t much farther than North Lakeland so whichever is best for her needs we’ll make it happen. The therasuit is typically only used for a few weeks and she’ll be in outpatient for months. Another down side  with her discharge is that with all the changes from healthcare reform the hospital can no longer order Nica’s outpatient treatment while preparing for her discharge. Instead, they have to wait until her discharge is finalized and a closed before they can put through the order. In the real world this means that instead of the 2-3 day lag between discharge and outpatient that was the norm just months ago she’ll see about a 10 day lag. It may not sound like much, but when you see how much she improves in just a day or 2 the idea of 10 days or maybe more without PT  just makes me sad. I know there’s a lot we can do at home, but I’m Dad and I can be a bit of a softy when it comes to my girls.

Friday, the Krewe of Zingaro came to visit. They were billed by the hospital as a pirate krewe but they were actually a gypsy troupe that works in the spirit of a Gasparilla pirate krewe. They are co-ed and they were fun to see. They gave Nica her favorite set of beads. They are large black beads with a female pirate rubber duck hanging from them, and it squeaks. What more does a three year old girl need.

Mommy and Anne showed up Friday night with an hour of visiting hours left. It was great to see them again. One of the best parts was that finally there was some else to take Nica down to see Michelle the Mermaid. There were apparently some pre-Gasparilla fireworks that, although we couldn’t see them from the hospital, Anne could see them from her window and the Ronald McDonald House.

Saturday morning, while Nica was in PT, Tammy and Anne secured a spot directly behind the hospital to watch the pirate ship, Jose Gasparilla, come down the channel to invade downtown Tampa. As Nica and I prepared to join them, Grandpa Joe and Grandma Kathy arrived for a surprise visit. We all sat by the water to view the spectacle and collect some more of the beads that were being shot off of the various boats that would become part of the Gasparilla flotilla in the channel . Tammy got hit in the head by one necklace but fortunately we were already at a hospital. It was really loud with all the cannons and pistols that were being shot from the ship. Nica did appreciate the noise at all and kept shouting “bye bye cannons, bye bye.” We watched the ship dock and went to the cafeteria for lunch. Having filled everyone’s stomachs it was time to bid Grandma and Grandpa goodbye and take a nap.

The rest of the evening was low key. We got some play time in with Mommy and sissy before it was time for dinner and bed time preparation. It’s really weird not having to think about Nica’s meds all the time. it was an easy habit to form because it was so important. 3 times a day for 2 1/2 years is going to be a hard habit to get over but I’m excited to do it.

 

 

Hump day

  • Posted on January 25, 2012 at 6:13 pm

Welcome to Wednesday. Today therapy was scheduled late, 10am, but that doesn’t mean you get to sleep in. The Parade still begins right after the 7 o’clock shift change. Ms Katie stopped by at around 7:20. I forgot to mention that when they returned Nica to me yesterday, they did so without the tray for her wheelchair. Dinner was not a pretty sight until rehab fabbed up a temporary tray using a lap board and Velcro. Nica accepted it and it got us through dinner. So, when Katie stopped this morning it was to tell they found the tray still on the bus. She kindly returned it this morning and now more is right with the world.

Dr Kornberg stopped by to take a look at Nica’s back, and do some range of motion with her. He’s still not sure about her duration here but mentioned that he was going to put the social worker on the task of setting up her outpatient therapy. He said that 3-4 hours a day is probably unrealistic at this point. I suspect it may have something to due with the shortage of pediatric PTs in Florida. There is a great demand and little supply. A problem that is exacerbated by now requiring a doctorate to perform the job instead of the masters degree that used to be good enough. He said that in Lakeland they’ll be looking at All Children’s, St. Joseph’s, or Pediatric Therapy Services. He said at least 4 days a week but it depends on facility schedules. I’m hoping we can work everything out to keep our Beckman therapies. If need be we could even resume PT there for a 5th day a week.

PT came at 10 today and Katie brought a student with her, Lauren. Lauren is studying to become a rehab therapist and she wanted to spend a couple of days in pediatrics to help decide if that’s the direction she wants to go in. Lauren is really sweet and Nica really took to her. Katie is concerned that perhaps Nica’s core strength isn’t were it needs to be yet in order for her to really be able to walk. She tried several combinations today, walker with and without the sling, with and without the knee immobilizers, and no walker. Nica had trouble with each of them. Reviewing Nica’s latest gait trainer video we could see that Nica was always prone to leaning forward when trying to walk. Bonnie thinks that it’s Nica’s comfort position. She explained that it’s typical for CP kids to have that one position they default to. Nica’s default position makes it that much harder for her to walk. Rehab is as much about breaking habits as it is about retraining and we need to get her back strong enough to break her slouching. Still, despite this, Katie commented that Nica has shown considerable improvements in her ability to control her trunk. She wants to change focus for a little bit to Nica’s posture. We’re not abandoning the walker, we’re just going to do more work on Nica’s trunk. The favorite exercise has thus become sitting on the edge of anything. Nica sits on benches. chairs, tables, and Pilates balls. The back up exercise is the stander. It supports her up to her waist and she has to keep the rest of herself upright.

We moved into OT right behind PT today. We worked with Lindsay and she had Nica on her tummy for a while in what’s called the prone position. From there she had Nica doing some puzzles and trying to string some beads. We did some more bead work from a sitting position, next. However, once Alexus brought out the Play-doh to work with Elijah and Nica saw it, she wanted to share in the fun. Today, we made a tower and, after her Godzillia syndrome kicked in, the Play-doh resembled a dog. It was quite interesting.

Being Wednesday, it was picnic day in the Alvin room, i.e. Child Life Center. It was the best meal I’ve gotten in this place. There was a pasta bar, and I enjoyed bowtie pasta with alfredo sauce and diced chicken fingers. I had to go back for seconds, once I realized it tasted like more. Nica had no time for food. There was only time for the work bench and doll house. She’s becoming and addict. I had to cut her off in order to get some food down her and let her take a little nap before afternoon PT.

Afternoon PT was more standing, this time while playing a Granimals matching game and some more Duck, Duck, Goose. By the end, Nica was asking for Michelle the Mermaid and considering that Lauren hadn’t seen her yet, we finished PT with Nica pushing her own wheelchair down to the window. I think I’m going to go down tonight with the camcorder to capture the window and the accompanying audio for posterity. I’ve asked several times if we could just take the window home but no one has said yes yet.

Nica is definitely done for the day, and I know she’s tired for 2 reasons.

1, she’s yawning like crazy, and

2, she chose to sit on her bed and watch The Little Mermaid over going back to the Alvin room.

 

Dinner has just arrived and Nica is crying about being hungry. Gotta go.

Stay tuned, Ray

P.S. I just found out that Nica was on the news last night. Katie’s friend called her to tell her she had just seen her on the news with a little girl and some pirates. Katie forgot to ask what channel. I’m going to do some digging and see if I can figure which channel and whether or not it’s on the channels website. I’ll let you know if I find it.

Oy vey

  • Posted on January 24, 2012 at 10:45 pm

Today started way too early for me and apparently to late for Nica who decided at 6:14 that she wanted to watch House of Mouse. I tried very hard to convince her to go back to sleep and I met with a modicum of success in this venture, but it seems everyone else was early today also. People kept filing in and out of the room all morning and then I forgot that Nica’s PT was at 8 and not 8:30. It was OK as Katie was just getting in herself and the few minutes I needed to get Nica ready gave the nurses time to take Nica’s vitals and give her her meds.

When we got to PT we were excited to see the knee immobilizer box waiting for us, that is until we opened it and saw there was only one in there. I’m guessing that in the spirit of Gaspirilla week, they wanted Nica to walk with a limp. God bless her, she tried really hard to do it, but in the end it was just to awkward. The tricycle proved much more effective, but without the knee brace. I didn’t see it unfortunately, as I was the prize at the end of the ride, waiting in the room with the Nemo play set that Nica was asking for. Katie told her that if she wanted it, she could go get it herself. So, she did.

We got back to the room and got set up for walking without the limp only to find that this was the time when the limp would’ve been more appropriate. We got attacked in the hall by Ye Mystic Krewe of Gasparilla. They were making sure that the kids each had a bounty of pirate treasure to brighten their day. Today, Nica got more beads, a plush pirate football, pirate stickers, 2 pirate bracelets (so she could share with Anne), and a YMKG fabric patch. It was all pretty sweet. We were later told that we’d be invaded again of Friday and that we should prepare our selves. Nica like everything so much that she wore her new pirate garb the rest of the day.

OT moved in with a new girl today. She had Nica do some sitting while coloring and crafting with Play-doh. Nica made a plate and a snake, and some red ice before she decided she was done. She began singing the clean up song and put all the Play-doh back in the big tub.

ST also brought a new girl to play, Suzanne I think. Tim said he wouldn’t be able to see Nica every day and when he couldn’t make it he’d try to have Suzanne fill in. She was nice and she had Nica doing oral motor exercises that I’d never seen before. For example, she put a plastic spoon sideways in Nica’s mouth and then had Nica talk. It was very interesting. She said Nica responded well to the technique and that there was better tongue control. We’ll see if it continues to work or if Nica just gets sick of it.

With the early start of the day came the early end of the morning. We were done by 11 and lunch was in the room. Nica ate 2 large yogurts, and some fruit and then she took a 45minute nap. It wasn’t as long as I would’ve liked but she was afraid she was going to miss the outing to the Glazer Children’s Museum. Katie wanted to try to take just Nica today and I felt that Nica was getting comfortable enough with her therapists to go without me. I tried really hard to get them to take either my camera or my camcorder because I knew they were phone picture people, but I failed. As a result, I got to see low res  underexposed pictures of Nica playing that might have been really cute if I could make them out better. It was Nica, Vari, and a new boy Elijah that went today. Nica did some dancing, put on a fireman’s costume, and made a paper hand puppet. She was super sweet on the way back from the museum to boot. You see, Vari was very upset and Nica wanted to console him and help him feel better. She did what she knew works for her. She let Vari hold her favorite Ariel doll, the one she calls Mommy Ariel. Tim told me that it worked too. After a few minutes of holding Ariel, Vari was doing much better. I was so proud of my daughter. 3 years old and willing to share the thing that means the most to her and has given her so much comfort and peace over the years. She was so happy that she was able to cheer Vari up that as soon as she saw me again she had to tell me all about it.

Dr Korberg made an executive decision again today. He is concerned about Nica’s trunk control and was thinking that her muscle relaxer may be more of a hindrance at this point. He’s now cut her down to 5mg once a day, before bed. I’m excited to see how she does. We may even to be able to wean her completely off of muscle relaxers before we leave here. All because of one operation. It continues to amaze me how far she’s come in such a short time. At this point there is still some wait and see regarding the baclofen, but going from 30mg a day to 5mg is just amazing. Something that Tammy and I thought would just be a part of Nica’s daily life has nearly been removed. I know there is a chance that she’ll need it again later in life, but I choose not to dwell on that right now.

On a new topic, it looks like Anne may be getting tubes put in her ears. She’s running a fever and we found out today that she has another double ear infection. Her pediatrician reviewed her chart and saw that’s it’s every couple of months that we are in with Anne for ear problems. She’s recommended we take Anne to see an ENT. Tammy and I decided that one kid in the hospital at a time is enough and we’re going to wait for Nica and I to get out of here before we take on Anne’s ears and a new hospital trip. Besides, a couple more weeks will give the antibiotics a chance to work before some one goes poking around in her ears. Keep us in your prayers as it looks like the ride will be extended and switching tracks. All aboard, woo, woo!

Well, thus marks the end of another day. I hope everyone is well.

Ray

Monday, Monday

  • Posted on January 24, 2012 at 9:28 pm

So Monday was nice. PT again to start and we got a few good steps in, most of which I managed to capture on video. We’re over the crying in the walker now that her inner thigh\groin area has healed. We’re putting Mepilex on her before each PT session so that the new skin doesn’t become irritated again. It seems to be working and preventing any more chafing. Katie said she wants to start trying to eliminate the sling\saddle all together and make Veronica use those legs more. The problem we seem to having at this point is she can stand or she can move her legs. She can’t seem to do them at the same time very well. Dr. Kornberg said swimming is probably the best exercise for her right now but we have no pool here. He explained that a lot of the problem is not enough support from the gluteous muscles. An idea they sometimes try as a work around is knee immobilizers. It’ll allow her to more easily carry her weight and focus more on her stride. Combined with the orthodics she already wears, this should make every joint in her leg unable to bend and I’m curious to see how well this actually works.

OT went well today. We got Ms Kim back and she was excited to see Nica’s new LeapPad. She got a little carried away and had to stop herself from playing with it. She agreed that it was a good purchase and it offered Nica a lot in the way of fine motor development. Nica has already become adept at turning the pages of her ebooks. She prefers the d-pad but she’ll sometimes use the touch screen as well. She uses the thumb for the d-pad and the forefinger for the screen swipe.

Speech followed right behind and Tim started with some oral motor exercises. Nica still has trouble moving her tongue side to side independently of her head. This of course has some negative effects when it comes to understanding what she says. He’ll keep working on oral motor as much as possible as well as multi-step directions. For example, you can say Nica do this and she’ll do it, but you can’t say do this AND this. Her brain takes a wrong turn at the conjunction and gets lost along the way, kind of like Bugs Bunny and Albuquerque.

Afternoon PT was a challenge. Nica was in a great mood, to great in fact to engage in PT. She wanted to be silly and cute instead of work. We struggled through it as best we could but then her medical team came in and that was that. Nica got out of the rest of PT due to a doctors “appointment”.

Once everything was over Nica wanted to go back to the room, sit in her bed, and play with the Finding Nemo play set that Joe and Kathy brought on Sunday. After a while, Nica remembered the “Alvin room” and we were off. We shut it down again which wasn’t to hard as it’s closing early this week. It seems that Ms Stephanie had to leave to go get married. That’s not so bad but Ms Kelly can’t stay till 5pm. She has to leave a bit early in order to pick up her son from school. Oh well, what’s a 3 year old to do. It all works out in the end though because we’re in the room and ready to eat when dinner arrives, and then it’s diner, bath, and bed.

On that note, goodnight.

Walking video

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