Monday, September 27, 2010

Faith's iPAD

There's a blog I read called Caleigh's Corner about a little girl with CP. Her symptoms are similar to Faith's except that Caleigh is nonverbal. One of the posts discussed Caleigh having her own iPAD along with a special language app to enable her to "talk." I saw the photos of Caleigh with her iPAD and thought how awesome that would be for Faith to have her own.

Then, a couple of months ago, during a visit with friends, Faith discovered the Apple iPAD for herself. I saw her with an app called Pocket Pond and how she could press the screen to make a splashing noise and the water ripple. She loved it! She also checked out a piano app where there are the actual keys of the piano. After she was done looking at it, she looked at me and said in the sweetest voice, "mommy can we please take that little screen home with us?"

I discussed the prospect of Faith having her own iPAD with her speech and physical therapists and they both agreed it would a great tool for Faith, educationally and therapeutically. They both encouraged me to apply for Great American Bike Race (GABR) funds to get Faith her own iPAD.

The funds went through and we excitedly made the purchase for Faith. Before giving it to her, we wanted to find as many useful free apps as possible and also download some of her Sesame Street videos. Finally, the day came for us to give it to her. She was soooo excited! She laughed and screamed, "I have my very own little screen!"

Faith playing Pocket Pond on her iPAD with it sitting on her lap
Over the weekend we've been trying to help her maneuver around on the iPAD. She's great about pushing the bigger icons but it's going to take some practice for her to touch some of the smaller ones. I really believe she'll get it though and it's going to be great for her fine motor skills. She needs to have an open hand to operate the touch screen and also be able to put her pointer finger in the right position. I've seen her do that several times this weekend and I'm so excited!

There are tons of apps out there - and I can't wait to be able to purchase some of them. Right now we have some learning apps that help her with letters, sounds, numbers and sight words. Another app called Dragon Dictation allows her to speak into a microphone and it puts the words on the screen - perfect for our little storyteller!

Faith playing with her iPAD while laying on the floor
She's just like her mom and dad and loves the computer and I really believe having her iPAD will help motivate her with learning and with attaining new skills. An added bonus is that it is so light and ultra portable so we can take all of her apps with us wherever we go!

Faith sitting at the table, playing the piano on her iPAD
We are so thankful to GABR for making this a reality for our daughter. There are many parents of children with special needs in other states who do not have funds available to make such a purchase. We can't wait for Faith to bring it to therapy to show everyone!

Having fun with the alphabet on her iPAD

Wednesday, September 22, 2010

My Mystery Girl

Okay, so I've officially given up on trying to get some sleep. Actually, I did manage to get about 20 minutes of shut-eye while Faith was being mesmerized by Caillou. Faith and I have been up since 5:00 this morning. To make matters worse she didn't fall asleep until 11:00 last night. She has a cold and when she has a cold she just doesn't get much sleep. Unless, I found out today, she is at school.

I took her to school this morning because she was laughing her head off at Bert and Ernie on one of her DVDs and she seemed pretty chipper, despite her plugged up nose. So then about an hour after bringing her to school, I get a phone call from her aide saying her teacher suggested that Faith come home because she was dozing off in her chair. Faith? Falling asleep in her chair? What? It was hard to believe.

When I got her home, I tried twice to get her to take a nap but to no avail and now, at 3:00 p.m. she is still wide awake, just as happy as can be. Sometimes my daughter is a mystery to me.

We are still working out some of her digestion issues. She hadn't had a BM all last weekend so finally on Sunday night we gave her an enema and it did its job. She has had regular BM's since then - hopefully it stays that way.

As for me, I still haven't heard any news about my holter monitor reading. I'm going to try to e-mail my cardiologist to see if he needs to see me next month or not. Thanks everyone, for all of the prayers for me as well as continued prayers for Faith. We know God is hearing them!

Friday, September 17, 2010


Today I find myself struggling. I have been on the verge of tears all day. No, it's nothing to do with Faith. I'm going through a little 'blip' with my own health. Strange, even though I know I have a heart condition, I don't really think about it much. I take my daily meds and that's about the extent of it. I'm more concerned about Faith and how she's doing in school, at therapy, with her digestion, with her stretches, with her learning, the list goes on and on. There is little room to think about me. As is the norm, I think, not just for moms of special needs children but all moms.

It all started last week when I went in for a routine pacemaker check to see how much life was left on my battery. It was good news - still about 16 months left to go, which means no trip to Rochester anytime soon for a battery replacement. Then early this week, my cardiologist from Mayo calls and asks how I've been feeling lately. Apparently there was an arrhythmia called atrial fibrillation on my pacemaker report. I was a bit baffled as I hadn't been feeling any palpitations or abnormalities. He wanted me to get a 24-hour holter monitor and then we would go from there.

On Thursday, thanks to my good friend, Tina, I made it to Medcenter to get my holter attached. I had one about 15 years ago and they are much smaller now. While I was getting hooked up, Tina had taken Faith and her kids to the library. When I was all done, I met them all at the library and as it turned out a local dance company was giving a ballet demonstration. There were twelve dancing princesses and Faith and Tina's girls just loved it! It's all Faith could talk about last night.

I didn't sleep well last night because I was paranoid about something on my monitor getting disconnected. So this morning after getting Faith to school, I was thankful to get in a three-hour nap.

Since receiving the phone call from my cardiologist and especially since being hooked up to the monitor, I have been trying hard to not let fear or anxiety take over. I have moments of thinking what if something were seriously wrong with my heart, what if I end up needing another surgery, how would I take care of Faith? BUT I do know that God is in control, He truly is the Master Planner. He knows what my future holds and he will make provisions for all of my needs to be met, just as He always has. I'm so thankful that by knowing Him, I can take comfort in His promises.

It helps, also to have a wonderful friend to talk with and be with and pray with during this time. I'm so thankful for my friend Tina and I don't know what I'd do without her! She is a total blessing to our whole family.

Seven minutes left, then I can finally take off this monitor and take a nice, soothing shower!

Wednesday, September 15, 2010

Class Field Trip to Papa's Pumpkin Patch

It was a little cool this morning, with the temp barely above the 50 degree mark and the sky was threatening rain, but that did not deter these Centennial first-graders from having fun at the Pumpkin Patch!
Mrs. Reim's first grade class

Sittin' on some big square bales

The horses were so beautiful and gentle

Who is that peekin' through the window?
Going on a bear hunt...
Hay Girls!

Friday, September 10, 2010

Our IEP Meeting, A Dietician and Chocolate Cake

Faith loves chocolate cake!
What a crazy week this has been. We have had many appointments and meetings this week but I'm only going to mention a few of the more important ones.

We had Faith's IEP Meeting (Individual Education Plan) which is a huge meeting involving all who work with Faith at school to ensure we are setting up proper goals for her and working with her to attain those goals. If I count correctly, there were a dozen people seated around the conference table - all who thankfully have Faith's best interests in mind.

Rob could only be there on his lunch break so I was a little nervous at first when he wasn't there because I was worried I was going to say the wrong thing or answer a question wrong or something. But thankfully when Rob showed up, my nerves settled. They all talked about standardized testing and how that really wouldn't be fair to Faith considering her physical limitations. In the end we as a team decided to for-go any type of testing and focus on helping her achieve her goals.

Throughout the meeting, I was genuinely impressed with each and every one of those members on Faith's IEP team. They all had great input and great ideas. They are a group that is high on problem-solving and will go to great lengths to make sure Faith's needs are met at school. I really couldn't ask for a better group of people and am completely confident in each of their abilities to allow Faith to achieve success at school.

I am not naive and I know this isn't always the case with special needs kids and the schools they attend. Some parents really have to fight for their child and defend their child. It is obvious in some cases that the school doesn't even want to deal with certain children or the needs of those children, which I find sad and heartbreaking. I am also thankful that Faith's school has so many resources at their disposal, which I know is not the case for every school, especially those schools in smaller towns or on the Reservation.

On another note, Faith had an appointment with a dietitian yesterday. I think Kelly really got a kick out of Faith, especially since Faith kept calling her by her first and last name. And while Kelly and I were discussing Faith's diet, Faith would interrupt and say to Kelly, "I think you need to write that down."

We decided Faith needs more fiber added to her diet to ensure she doesn't get constipated. I also found out I may have actually been feeding her too much with her 10 oz. feedings four times a day. Faith had a fast growth spurt this summer and that's probably why! The dietitian told me if they grow too quickly it could impede their physical capabilities (those with CP anyway) and cause her body to not function as it once had. Which is what we were seeing with Faith - her digestive system seemed to be not working quite as well as it once was. We also figured out exactly how much water Faith should be getting and that she could continue to eat solids as she pleases.

The dietitian was really able to break the numbers down for us and figure out exactly how many calories and grams of fiber, etc. Faith needs for her body to function as optimally as possible.

Finally, I am giving the recipe for my crockpot chocolate cake that I had mentioned on Facebook and had many interested inquiries about it. Hope you enjoy it as much as we did!

18 1/2 oz. pkg. chocolate cake mix
3.9 oz. pkg. instant chocolate pudding mix
6 oz. pkg. semi-sweet chocolate chips
2 c. sour cream
1 c. water
1/2 c. oil
4 eggs, beaten
Ice cream or whipped topping

Mix all ingredients well; pour into a greased slow cooker. Cover and cook on low for 6-8 hours. Serve warm, topped with vanilla ice cream or whipped topping.

Monday, September 6, 2010

Exercising with Faith

Move over Denise Austin!
About three years ago, on New Year's Day I decided 2007 was the year I was going to start exercising on a regular basis. So, like many others who had made the same resolution, I ran to Wal-Mart and bought the latest exercise DVD. It was a dance/exercise video with Denise Austin. I later purchased her Boot Camp one as well. I had no idea at the time I began the exercises that Faith would want to watch the DVDs for entertainment. And really, if you think about, it makes sense. Lot of repetition with lots of counting - just right for kids!

Because Faith has watched them so many times, she pretty much has them memorized. This can be sort of comical like the time she went to preschool and told her speech therapist to squeeze her buttocks. Or like when I took Faith to physical therapy and she told Jackie she was ready to do her active isolated stretches. Jackie was pretty impressed!

When Faith isn't in the mood to do her stretches at home, she gets motivated when I pretend to be Denise Austin. I tell her, "you're strong, you're fit, show your power!" She rolls right along with it and while doing a tough hamstring stretch, she yells, "Four seconds left - I'll look great in a bathing suit!"

There are some things she gets a little mixed up, like instead of a "downward facing dog" it's a downward facing doll" which probably makes more sense to her. For the most part though, she's yelling all of the words right along with Denise. She especially likes the "shuffle, shuffle, shuffle, squat and lift" part.

When I am actually exercising along with exercise videos, Faith, not Denise is my biggest cheerleader. "Abs are tight mommy - you're a fat burning furnace!"

Lately, Faith has been asking to watch them again - I think she's trying to tell me something!

Wednesday, September 1, 2010

Special Exposure Wednesday

Soon Faith will be going along with her first-grade class on a field trip to Papa's Pumpkin Patch. I'm sure there will be a few more trips to the Patch as a family. Isn't Fall a great time of the year?