You are currently browsing the archives for February 2012.
Displaying 1 - 5 of 5 entries.

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.



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