A Not So Fun 4th and Tough Week for Faith

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The other day Faith and I were standing in line at the pharmacy, and someone asked her, "How was your 4th of July?" She responded quite honestly, "Terrible!"  Yes, it was definitely not a very fun 4th. In fact, this whole week has been one challenge after another. The only thing we really did for the 4th was go to Art in the Park in Mandan, which was last Friday. Faith found a new tie-dye t-shirt, and I enjoyed a yummy root beer float.  Art in the Park in Mandan on the 3rd I had actually gone with the goal of getting an Indian taco, but it was so humid, I didn't feel like eating anything hot. Because it was so warm, we only stayed for an hour before heading back to Bismarck. That night, I noticed that Faith seemed uncomfortable in her chair, almost like she was having pain. She told me she needed to get out and lie down. I thought maybe being out in the high humidity had been too much for her or that she was having muscle spasms. After she lay down for a bit...
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Our IEP Meeting, A Dietician and Chocolate Cake

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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 answer a question wrong or something. 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.

On another note, Faith had an appointment with a dietitian yesterday. I think Kelly 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!

Ingredients
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.

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