Made of Gray

Such a Long Week

Holly D Gray5 Comments
The hard floors are down. Caleigh's back in her own bedroom. The Gray family is officially exhausted.

As soon as we moved Caleigh back into our bedroom for the renovation she decided to stop sleeping. I swear we haven't slept in 6 days. There was one night that she made it until 5:30am and that's it. The general schedule lately has been to wake up around 1 and stay up till 4-5am. So with all the work and disruption going on at the house we are all very tired. I'm hoping that once we get back to our schedule everything will calm down some. Last night was the first night back in her bedroom and she did do better, but we we're definitely up for a few hours.

On Tuesday we had an appointment with Monkey Mouths. This is a new speech and feeding therapy place that I found. The therapists that work there have so much experience and they use a variety of methods that I'm interested in. The place is so dang cute. They must of had a great decorator. Caleigh's evaluation lasted for about two hours. The therapist thinks that Caleigh has an aversion to pressure and movement. So when the spoon, or whatever we use to feed her, goes in her mouth she is scared. Then the food starts to move around and that makes the sensation worse. It was something I hadn't heard before. So even though it brings on new challenges it was nice to have an answer for what's been going on. She gave me several stretches to start doing and suggested not feeding Caleigh until her muscles are strong enough and her aversion is better. We can do tiny tastes of food and liquid, but only using a small straw to release it into her cheek. She basically thinks that Caleigh isn't sure what to do once something goes in her mouth. Another great thing about Monkey Mouths is that they also do Hippotherapy. This is therapeutic horse riding with a purpose of a specific goal, i.e. head control. Once Caleigh turns 2 she can start this therapy. So we are going to drop our home speech therapist and start going to Monkey Mouths twice a week and when we start Hippotherapy we will go three times a week. It's about a 30 minute drive from our house, but at this point I just want Caleigh to be able to eat and with all the stretches hopefully she will be able to speak as well. I asked the therapist if she thought Caleigh would be able to eat by mouth and she said 'yes.' So I'm hopeful and happy to have a plan instead of the 'keep doing what your doing' senerio.

On Thursday we took Caleigh for a renal ultrasound. This was to check on her kidneys and to see if there is a reason for her high blood pressure. Caleigh did really well during the long ultrasound. I had to pull out every kiddy song imaginable and then made some up, but it kept her still. Her bowel dilation and gas made it hard to see the arteries which was what I was really interested in. If anything in her abdomen is compressing the renal vein then that could be a cause for the hypertension. Her kidneys looked great and had grown wonderfully since the last time we did an ultrasound. I'm not sure what our next step will be. I'm leaning towards an Endocrinologist to check certain hormones that can cause high blood pressure. We haven't seen one of those yet anyways...why not add that to our list of doctors and specialists! Caleigh also has a body odor and no one can tell us why. Maybe hormones, maybe more of the 'I don't knows'..... So that's on my to do list for this coming week.

On the airplane to and from Philly I finished the book BLUE SKY JULY: A Mother's Story of Hope and Healing. It was amazing, inspirational, and loving. It made me cry. It made me proud. It made me stop and think about our situation and how it really isn't that different.

Set between the summers of 1998 and 2005, Blue Sky July follows the story of Nia Wyn, a mother who battled against impossible odds to heal her son Joe, who was diagnosed with cerebral palsy soon after he was born. Told by doctors that he would never walk, talk, see, or even recognize her, Wyn devoted her every waking moment to exploring alternative treatments. Through an intimate portrayal of her day-to-day interactions with her son and partnerโ€”as well as her own internal struggles, perceptions, and celebrationsโ€”Wyn shares her own uplifting story of resilience in the face of tragedy.

If you have a child with special needs this book is a must read, but this book is also wonderful for those trying to understand and educate. I'm going to start re-reading it again soon.

Here's another tip from The Institutes: Buy a Hepa Filter to clean the air in your home. I bought this one a Target...
It really helped with the dust while we were pulling up marble and carpet. It now lives in Caleigh's room. They suggested a Hepa filter over an Ion filter because there just isn't enough research on the Ion filters yet.
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