Displaying 1 - 10 of 40 entries.

Finally…

  • Posted on April 5, 2012 at 10:01 am

We were told in the hospital that we should expect a 10 – 14 day gap between discharge and outpatient rehab. It’s turned out to be almost 2 months. Nica was discharged on 2-17-12 and didn’t begin outpatient rehab until 4-3-12. We’re attending rehab in N. Lakeland at an All Children’s Hospital remote campus. The therapist, Kimberly is really nice and is working well with Nica. We have a lot of work ahead of us now. Nica has lost some ground physically in some areas but gained in others. She’s lost some strength in her legs but gained it in her trunk. She’s great at sitting up on her own now when she’s playing in the floor and she’s going strong on potty training. She want’s to potty train so bad and she’s made some real strides. Socially she’s so much happier and outgoing post-op. She’s not so easily disturbed by loud noises, elevators, and various other things that used to bother her. We chalk some of it up to her simply being more comfortable

Now lets see how we do in rehab. the biggest problem we face is that by starting it so late in the year means that rehab will now interfere with preschool for the first 2 months of the school year. Somehow, we’ll make it work.

Regular posts will begin again now that we’re in rehab and have a way to better track her progress.

At the Fair

  • Posted on February 15, 2012 at 10:25 pm

As Mommy and sissy drove in for the weekend, Anne saw all the lights at the FL State Fair and asked if she could go. That turned into our outing for Saturday. The girls had a great time. Anne couldn’t get enough of seeing all the animals and Nica loved all the rides. It was a little difficult to find rides she could go on but we managed to do it. Our biggest problem is that Nica has become accustomed to the way Disney lets her go on rides. If Nica is in her wheelchair and no one else is waiting for a handicap accessible car then they just let Nica go around 2 or 3 times without getting off. She just didn’t understand why the carnies wouldn’t let her do the same thing. One did let her ride twice, the carousel operator let her go twice when he saw her crying about getting off. The amazing thing about the carousel is that Nica was on a regular horse and she was holding herself on. Tammy was there as a safety net, but that was all. It was great to see her holding on. There’s video at the bottom. I shudder to think what would’ve happened before the surgery and rehab. She really has come so far in such a short time. Nica also felt she needed a new plush clown fish and she proceeded to tell us unceasingly. It seemed like every game had one as a prize. I had won her a rainbow colored fluffy plush dog but she chose to trade it in towards the fish instead. She still talks about how she traded her rainbow puppy for a fish. It’s a fun conversation if you get the chance. She decided to name the new clown fish Marlin as, like Nemo’s dad, this fish is a paler orange and both front fins are the same size. It was so sweet to see my girls on those rides together, being normal sisters. If you just saw her on the rides, you’d never know Nica has CP. She sits better, has better control of her hands and arms and her legs are slowly improving too. Quality of life is what we wanted to change for Nica. We wanted to expose her to more opportunities and help realize more of her hopes and dreams. At three, her dreams might seem small, but she dreams of the things so many of us take for granted. She talks all the time about taking walks with Anne. She can’t wait. She wants so much to be able to ride a tricycle all by her self, and she wants to wear herself out going up and down the slide at home. I can’t wait to mark each accomplishment on the calendar and when she’s older show her how much she’s overcome.

We’re scheduled to go home on Friday 2-17-12. It’s kind of weird thinking about it. We got to St. Pete ACH on Jan. 4th and Nica and I have slept in a hospital every night since. 44 days. Nica’s so ready to go home. She misses everyone so much. She asks to go see her OT, Heather Tanguay, and her ST, Debra Beckman, more regularly, not to mention Miss Jena, her swim teacher. Most of all, she misses having Mommy and Sissy everyday. The last couple of weekends were really hard for her to let go of. She just didn’t want to accept that Mommy and Sissy had to go back home. It’s begun to effect her performance in rehab. The neuropsychologist here, Dr. McCain, says Nica has all the signs of hospital-itise. For me, going home is kind of an odd thought. Any one who knows me knows I’m not a big fan of change in my life. When I buy new shoes, I scour the web to find the exact same shoes I just wore out. Hospital life has become comfortable now, and I like the slower pace of not having to go any where to do anything. Not to mention, we’ve made so many friends among the staff here. Overall, it’s been a great experience filled with excitement, frustration, and triumph. Returning to the daily chaos that is my regular life is going to be a bit of a culture shock I think. Knowing that I’ll get be with my beautiful wife and eldest daughter everyday again is a comfort I look forward too. To Joel Ryals and all of our service men and women, I have a new respect and empathy for you all. Thanks for your sacrifices.

State-Fair video

Hard Work

  • Posted on February 8, 2012 at 8:02 pm

So, updates have been difficult as work has picked up a bit. Let’s see if we can get caught up real quick. The weekend was great. It was just Mommy and Sissy all weekend. I think that was a first. Saturday we all went to the park that Nica had gone to on Tuesday. We played for about an hour or so, but there were three birthday parties and it was crowded. It would be a nice park for Nica if it wasn’t so crowded. After the park we went to Chic-Fil-A. Nica had been having a craving for about a week and a half. It turned out to be Mother\Son date night and their fun spilled over into the entire dinning area. The girls each got inflatable swords, and balloon flowers. Sunday was just a nice lazy day with the family. We all spent several hours in the Alvin room. Nica’s friends had come down as well and all the kids played together.

Monday it was back to work and boy did Nica work. It was the first day Nica walked without any kind of seat or sling in her gait trainer. She had to bear her own weight and walk. She does not like this activity at all. She can and does do it, but she really complains about it. I edited most of the screaming and yelling out of the videos, but I left some in for those that want a deeper experience.

Tuesday we did more walking and screaming in the morning, but it was field trip day so afternoon PT would be cancelled. For the field trip Nica finally got to go to the Florida Aquarium. She had the best time. She’s been the only girl in rehab for a while so it was funny to hear that she was the only kid on the trip that fed the fish and stingrays. She loved touching them. She said the stingrays felt like cold hot dogs. She hasn’t quit talking about the trip, and is asking to go back again today. When I told her she couldn’t go back today she asked to go home and see her aquarium. I told her she had to wait a few more days.

Wednesday morning gave us continued walking a crying. She’s really missing the seat in her gait trainer. I can’t imagine how hard it must be for her. She’s starting to scissor a little bit again so we’ve the leg straps to help combat it. In time it should become less of an issue as she gets more strength and control. The trick is to help Nica forget that she’s working so hard. Yesterday we used bubbles to distract her while walking and this morning we used stickers. She got one sticker for every ten steps she took. She still fussed a bit but not as bad. I also got some good video of this mornings walking. Filming has been difficult because she begs me to pick her up and hold her so she doesn’t have to walk. The best thing I can do for her at that point is leave and take away the temptation. Still, she continues to get better with each session. What a trooper.

Nica-walks-2-6-12

Nica-walk-2-8-12-am

Big Thursday

  • Posted on February 5, 2012 at 3:52 pm

Wow, what a day Thursday turned out to be. Speech was first. It’s going well and she’s made a little progress. They’re using Beckman techniques for oral stretching and strengthening. I know that Debra Beckman “wrote the book” if you will on oral motor, but we’ve been seeing her almost weekly since Nica was a year and a half. She’s always been Nica’s ST and I’ve never had a real chance to experience the impact she’s had in her profession. It seems every ST here references her techniques and they are all pleased that Nica has the opportunity to work with her.

OT went was also nice. Nica did a lot of drawing and coloring. She drew a picture of her sister wearing a brown shirt, according to her. She continues to work on block stacking and bead threading and she enjoys all of the exercises.

As OT rolled around it was time to walk. We actually made some nice progress up to and until the moment when the therapy dogs found us in the hall way. Blaze, Chicklet, and Blake were joined by a new friend today, Jack. If you watch the video, Jack is the one dancing in front of Nica, Blaze is the Greyhound, Chicklet the Chihuahua, and Blake is the yellow Lab. Nica got to hold Chiclket for a while and that dog was very content, nearly falling asleep in Nica’s arms. Blake snuck around and starting kissing Nica on the cheek when she wasn’t looking. She was startled at first but then she started laughing. It was good timing as Nica’s has been talking about our dog Iris lately. With the arrival of the dogs came the end of walking. It was OK though as Nica had done pretty well up to that moment. Having bid the dogs a fond farewell, it was time for lunch and a nap.

Afternoon PT was short, about 30min. It wasn’t with Katie, who she usually has and works the hardest for,  so it was probably OK. We had to make our regular pilgrimage to see Michelle the Mermaid next, and then it was off to the Alvin room. They had some music therapy happening in the form of a harpist. Nica really enjoyed it. She wasn’t ready for her turn to be over, but the arrival of Grandpa Joe helped to cushion the blow. She took Grandpa back to see Michelle again and instead of returning to the Alvin room she told Grandpa she just wanted to go back to our room and play. It seemed far to soon when the time came for Grandpa to leave, but dinner had arrived and we needed to eat and get our bath.

We ended our evening with the video call to Mommy and Sissy. Nica gave everyone high fives over the internet. It’s become a thing with her. We said our good nights with the knowledge that tomorrow we’d be doing it it person.

Nica-Dogs video

Nica-Plays-Harp video

Follow up

  • Posted on February 2, 2012 at 11:28 pm

Here’s an extra video of her walking on 2-1-12.

Nica-Walking video

Doing Well

  • Posted on February 2, 2012 at 4:03 pm

So this week has been Nica’s best week by far, performance wise. She’s really missing Mommy and  Sissy, but we’re now able to video chat every night and I think that helps a little. She’s done so well this week that they’ve decided to add another week of rehab in order to build of the momentum. They’re philosophy is the better they do the longer they stay. Our tentative discharge date is now February 17th.

Nica has adapted well to no muscle relaxers at all. She’s stabilized now and we’ve got the Miralax dose figured out so she’s feeling better. She was a bit irritable while coming off of everything, but we’re happier now. All  that remains is normal 3 year old crankiness, and that’s usually reserved for when she’s feeling tired. Her personality is starting to come back and she’s getting really comfortable with all the staff and the environment. as such, she talks every ones ears off. She is the princess of rehab. Staff members who have only heard about her are now stopping by the room to meet her when they realize she’s in there. She loves all the attention. It’s gonna be a rude awakening when she leaves and the world no longer revolves around her.

Her walking has really taken off this week. We’ve finally gotten the walker figured out for her and her trunk is continuing to get stronger. They’ve been doing a lot of exercises on the Pilates ball. At the rate they’re going, Nica’s going to get back the six pack abs she had when she was 2. They broke out the sled swing this week and now that Nica knows it’s here she asks for it all the time. There’s some video at the bottom.

The field trip this week turned out to be to Freedom Playground. Apparently it’s a playground that accommodates special needs kids. Tammy and I hope to go this weekend with Anne and Nica. One of the girls in rehab, Destiny, was upset on the field trip and Nica reached out and took her hand. She talked to her on the bus on the way back to help her feel better. It’s amazing that when other kids have a mental meltdown Nica is the one that reaches out to comfort them. We’re so proud of her. Her Speech therapist supposedly has pictures, but I haven’t seen them yet. I hope to get copies.

Swing-with-Josh video

Nica_Walking video

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