Tuesday, September 27, 2011

Tuesday Tidbits - Paperwork, Cupcake Sheets and an Upcoming Appointment

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds.

It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there.

Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes. She has had a pair of pink cupcake pajamas and now has green ones. She even has a stuffed cupcake that was made for her by one of her aides at school. Then her auntie Barbara came over one day and gave her a decoration to hang on her wall - a picture of a cupcake.

I have been thinking for a while how cute it would be for Faith's room to have a cupcake theme. So imagine my excitement when I actually found pink sheets with cupcakes on them! I found them at Kohl's and not only did I have a $10 off coupon but they were also 60 percent off. They are perfect for Faith's new bed that we got her this past summer.




This Friday Faith sees her specialist who keeps tabs on how all of her therapy is going and measures her range of motion in her arms and legs. We'll also be getting hip x-rays done so we'll be able to see how her left hip is doing. It is slightly displaced which causes her left leg to be slightly shorter than her right one. I'm praying there is no change but I am expecting a round of upcoming Botox injections. Her leg muscles seem tighter and I think her not sleeping well lately might be a result of that. I am a bit relieved she'll be seeing her specialist as I am concerned about her hips but as always with this appointment, I am feeling a little anxious as well.

Lots of things going on, I'll be updating about Faith's appointment later this week. Please pray with us that all goes well and that Faith continues to progress as well as she has been.

Wednesday, September 21, 2011

Singing Along at Barney's Birthday Bash

Had it not been for the one fateful day that I had a craving for Little Caesar's pizza, I might not ever have known that Barney was coming to town. But there I was at the counter waiting for my medium pepperoni pizza when I noticed a flyer with a picture of the big purple dinosaur. He was coming live to Bismarck with his friends, BJ, Baby Bop and Riff - I couldn't wait to tell Faith.

Barney and friends appear live at the Bismarck Civic Center

I don't know how old Faith was when she saw Barney for the first time. A receptionist at pediatric therapy gave us a Barney VCR tape and Faith loved it. I started letting her watch Barney on PBS and then we started collecting the DVDs. All the while I couldn't believe I was letting my daughter watch Barney - me and my friends made so much fun of him when he first came out on TV. But as I watched along with Faith, I discovered all of the cute songs and some of the good things that Barney had to share.  I will admit though that for a while there, it did get a little tiring when all Faith sang was "I love you, you love me, we're a happy family, with a great big hug and a kiss from me to you..." over and over and over again.

Anyway, last night was the big night and it didn't start off so well. She kept saying she wanted to stay home and Rob almost let her but I wasn't about to give up so soon - the tickets were already paid for and I really wanted to try to use them. When we got to the Big Building (what she calls the Civic Center) she was still apprehensive but I just knew as soon as she heard Barney's voice she would want to go in and see him. Finally we went over to the ticket guy, let him scan our tickets and made our way into the dark auditorium. Barney was already dancing and singing on stage and when Faith saw him, she couldn't quite believe it.

An usher came over to ask if he could help us find our seats but I told him we wanted to hang out in the back a little longer until Faith got more comfortable. When she turned to me and yelled, "It's Barney!" I knew she was ready.

Barney and friends live!

Faith having fun and singing along!
I was so thankful and relieved that she overcame her nervousness and was able to relax and sing along to all of the songs. And when Barney's friends came on stage, she yelled out all of their names - I think she was the loudest kid there!

From an adult perspective I was a little surprised at how boring the stage was - just one backdrop for the whole show.  It was just the four dinosaurs on stage along with four accompanying singers/dancers - who were all adults. I thought it was strange they had adults and not kids. I was thankful we hadn't forked out the big bucks just to sit closer to the stage. But anyway, I did have fun singing along with Faith to all of the songs - there were only a few new ones that we didn't know.

At the end, everyone got to sing Happy Birthday to Barney (not sure how old he turned) which was one of Faith's favorite parts. But then after that, Barney's three little friends sang a slow, mushy song to Barney and I could tell Faith was having a hard time trying not to cry. She is very sensitive to that kind of music and often will end up in tears. I figured I better get her coat on and start heading out before they broke into "I love you, you love me." I was a little late though and when they started singing their traditional farewell song Faith was crying. We got out the door and into the van and all she could say was how she wanted to go back and see Barney again. She managed to calm down though and then got all excited to tell her dad about the great time she had at Barney's Birthday Bash.

Check out the little video below of Faith singing along to "Baby Bop Hop!"

video

Saturday, September 17, 2011

Making a Splash

Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September.  Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour.

Of course since Faith loves swimming I thought she would be very excited. Unfortunately though she seemed more nervous about it than anything. We skipped out on the first week but we did make it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool.

Faith kicking her feet up in the water

Faith tries to touch the bottom

Faith tries to do a back float

Monday, September 5, 2011

Our Spur of the Moment Trip

This past weekend we took a trip that was sort of spur of the moment. We have been wanting to take a little trip to see how we do traveling in our van so we decided to venture to - where else - Aberdeen, South Dakota.

It took us a while to get out of our parking lot because we kept having to run back upstairs for things like maps, plastic bags, water, and of course Faith needed to be sure we had her personal PlayStation (PSP) so she could watch her videos and listen to her music.

Since we were going to be in southern North Dakota, I wanted to go through Ashley on our way to Aberdeen. I used to live and work there so I just thought it would be kind of fun to see the little community 13 years later. We ended up missing the turn to Highway 11, and then we had to detour because of road construction which lead us to Eureka, South Dakota. Rob was thrilled because he is a big fan of the Sci-Fi TV show, Eureka, which actually takes place in Oregon but is filmed in Vancouver, British Columbia.

We have found it!

While Rob was checking out the information center in Eureka, Faith asked me what country we were in! Maybe she thought we were going to Canada!

After finally arriving in Aberdeen, we hit the Super 8 but they didn't have any available accessible rooms that were non-smoking. We opted for the Ramada Inn instead which turned out to be great and included a free hot continental breakfast in the adjoining restaurant. For supper we hit a Chinese buffet that reminded us a lot of China Star.

Faith finally being able to lay down and stretch out

After a somewhat good night sleep, we took our time checking out since check-out time wasn't until noon. Then we finally got going and ventured to Wylie Park - home to the Land of Oz and Storyland. We had a lot of fun taking Faith around the park to see all of the nursery rhyme characters. Her favorites were The Three Bears and Goldilocks and Mary Had a Little Lamb. She also really liked Old McDonald's Farm. The barn had live animals like chickens, sheep, pigs and goats. Later, we walked around the loop that contained all 50 flags for each state. I had known that Rob knew most flags for each country but he also knows the states as well.

Faith at Storyland in Aberdeen, South Dakota

Rob and Faith in Old McDonald's Barn
Rob teaching Faith all of the state flags

On the way back we did go through Ashley and it looked pretty much the same as when I left - maybe even a little smaller if that's possible. I had to stop by the newspaper office as well, which is where I used to work. Of course it was closed, as was the rest of Main Street on a Sunday. Then we went north up to Wishek and continued on the very scenic route of 1804 along the Missouri River.

our traveling girl
Faith did great the whole time. She was singing along with her music and just seeming to have a lot of fun when we stopped somewhere. We were so proud of our good little traveler! And the van is great to travel in - it has so much more room compared to our little Hyundai. Faith's feedings all went well while we were cruising along and we found that the bench seat in the back is just the right length for getting her changed. Despite Faith coming home with a cold, it was a fun little trip. Who knows where we'll venture to next!

Friday, September 2, 2011

Faith's IEP Meeting

Today Rob and I met with nine members of Faith's IEP team at school this morning. The meeting was at 8:00 a.m. so we had one of our respite care providers come get Faith ready for school and take her there, which all worked out very well.

The purpose of Faith's IEP is to set goals for her to work on throughout the school year. The whole team works together to ensure these goals are met, this includes me and Rob who work with her at home to help her attain some of these goals. I must admit that probably the hardest part of the meeting was discussing the fact that she is not making any progress with learning words and having the ability to read. I discussed this in a post from this summer after an eye appointment in which the doctor told us she is probably having trouble getting her eyes to track left to right. It is somewhat disheartening but as the doctor told us we should keep trying and finding new ways to help her eyes "attend" as they called it.

One person on Faith's IEP team is a vision specialist who works with the students at school and she gave us some great ideas on how we could get Faith to move her eyes around and focus on various objects, colors, shapes and words just to help increase her tracking abilities and to sort of train her eye muscles to track and identify in a quicker manner. We also decided to do more with Faith from an auditory standpoint. Some students with cerebral palsy do not have the ability to read so they do everything through auditory input as opposed to visual input. I do continue to have hope though that Faith will be able to read.

One of the more exciting things we talked about at the meeting is the assistive technology Faith is getting that will make learning much easier for her at school. She is going to be having a laptop mounted on her chair and all the books and other lessons that the other kids are working on in the classroom will be downloaded onto Faith's computer. So that for a book that the kids are reading, Faith will have that book on her computer and will be able to turn the pages by using her switches. These are the same switches Faith uses to drive her chair - it is amazing to me that they can connect all of this together for her!

Another exciting venture this year is that Faith will be in her power chair all day at school. This is especially nice for me because after school instead of having me push her up the hill, she'll be able to drive up the hill! She did it today and she did so good! Of course though when we are trying to leave school, she has to stop and visit along the way. It was cute because as we were heading towards our apartment, one of her aides who is also a crossing guard, was coming down from the hill so we stopped to chat. Faith was getting a little bored and ended up doing circles in her chair while she waited for us to stop talking.

All in all, the IEP went very well and I feel so blessed that Faith has such a great team to work with her. I believe if anyone can help her to achieve her goals, it is this amazing group of people. (This includes her fantastic instructional aides who help her in so many ways). I am also really impressed with Faith's teacher and I know Faith really likes her. I really believe 2nd grade is going to be her best school year yet.