Made of Gray

The Month of August

Holly D Gray4 Comments
Where do I even begin? I've left this blog quiet almost the entire month of August. Lately, we have been living life instead of documenting it, and really enjoying the outcome.
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I'll start where I left off, the scope. Caleigh is feeling so much better since the removal of the ulcer on the inside of her g-button stoma. The ulcer biopsy came back normal, which was expected. After about three weeks, we got the disaccharides enzyme results. All of Caleigh's digestive enzymes came back at normal levels except Amylase. Amylase is the enzyme that breaks down carbs. Which just happen to be in almost everything. Right now though we are holding out on changing anything. Caleigh will continue her rare tastes of food when she asks for it, and we will continue her Elecare formula. In our minds, we are wanting to get her down to three "meals" a day and no night feeds. Freedom from the tube is important to our family.
The month of August also brought Caleigh's 5th birthday. This year's birthday was again, lived, and not so much documented. We took Caleigh to the zoo on her actual birthday. We gave her a ukulele, which she is awesome at playing. It's just the right size, and she asks to play it almost daily.
Caleigh is so completely aware at 5 years old. For weeks before her birthday we counted down to the day. Caleigh frequently told strangers how many days it was until her birthday. She was so incredibly excited about her big day.
We woke her up that morning with balloons covering her bedroom floor. We bounced them around, played in bed and then opened presents. It was a good day. Caleigh's birthday party ended up being a rainy pool party. Caleigh's friends were able to swim a little bit before the rain hit. Our birthday girl wasn't excited about the rain at all. Overall though, she really had a good birthday party.
Caleigh's new AFOs aren't working out so well. The more they get adjusted the worse they fit. In the first 15 minutes of our car ride home from getting them adjusted again; Caleigh ended up with a bruise on the ball of her foot. She wasn't even bearing weight. Right now we are using her old boots while we work on the new ones. I'm not thrilled about the bruise.
Caleigh had an appointment with her orthopedic doctor this month as well. Caleigh's hips, neck and ankles are all doing well. We will go back in six months to check on things again. Right now we are looking forward to the next Botox appointment in October because it really did make a big difference with Caleigh's ankles.
Right now Caleigh is loving Strawberry Shortcake, My Little Pony, Phineas and Ferb, baby dolls, reading and watching the Olympics. The Olympic games quickly took over our house this month. Caleigh was mesmerized by the games. Specifically anything to do with water. Swimming was her favorite and we spent hours watching the athletes splash in the water. Caleigh would literally yell, cheer and gasp with the games. She loves it. The Paraolympics started yesterday and we have been watching the live stream online some today. I'm pretty sure that the paraolympians are the true athletes here; it's just amazing to watch. I would love to take Caleigh to the paraolympics in four years. It would be a wonderful experience for her. Guess I should start teaching us Portuguese in the mean time....
Last night we took Caleigh to our local college to watch their wheelchair basketball team. This was Caleigh's first time and she loved it. It was a little rough for me to watch. I'm so cautious with Caleigh's wheelchair. They ram into each other, tip their chairs over, and generally knock each other around. I wanted to help them off the floor every time they fell over. Caleigh quickly made a friend who promised to play basketball with her after the game. Unfortunately, Caleigh couldn't make it to the end of the game because she was so tired. We plan on going to the next game and getting there a little early so that she can play. Within a few minutes of watching she told us "I want to play." She also wanted her chest harness off and feet unstrapped. She did a good job of sitting up without them. Little miss independent herself.
Since Caleigh's schooling is year round and flexible, we are still enjoying summer while we have it. We generally do school in the morning, go to any appointments we might have and then play, swim and enjoy the afternoons. Caleigh still requests her weekly library visits and reading is a big part of our day. Art class will be starting up again in a few weeks as well. Public school starting up hasn't changed our routine at all. It was relaxing not having to do the typical things involved with the start of a new year. I think we've found a good groove this year. September will be typically busy. I'm hoping to keep up around here a little more often.
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