The good thing was today was MOSTLY ups. The only down today was getting Amelia's prescription filled at the local hospital... which wasn't an in-network provider for our prescription insurance... Almost $100 later.... We will be finding an in-network provider for any further prescriptions as it is about $20 for the same prescription.
Other than that, we had a number of good things happen today. I'll try to touch on each briefly.
First: Parents Support Group, every Monday. We got to see that we were not alone, and that we were actually very fortunate that we were getting Amelia help very early in her young life. It was a good feeling to hear many other parents having similar struggles to us, and feeling a similar relief as we were.
Next: Vitals! Amelia had her first vitals checkup (height, weight, blood pressure) and she was up 2 lbs from her initial interview (on Thursday). That was great to hear as her overall goal weight is 66 lbs, and she is a third of the way there! Once she hits her goal weight, hopefully we can start working on the Bit, Chew, Swallow step of this process!
Next: Good news from Nama. My mom told me about a visit to her oncologist she had today. She was up with us over the weekend, but had to go home to make her appointment. Sitting in the Oncologists' her nurse asked her "So, what did you do this weekend..." and she related Amelia's story to the nurse. The nurse almost broke down in tears and told her that the nurse's 5-year old son had been diagnosed with ARFID, the same thing Amelia was diagnosed with, but no one knew how to help him. My mom got her the name and information for the Kartini Clinic, and the nurse said she would be talking to her pediatrician for a referral. Even in our times of trial, we are able to be a light of hope to someone else.
Next: One of the other kids staying at the Ronald McDonald House had to get a NG tube in today, different diagnosis, different age, different reason. But Amelia was still able to encourage this older girl with her experience so far with the NG tube and it really seemed to help this girl relax and be more accepting of it. My little trooper is already reaching out to others.
Next: Amelia has been expressing a little more interest in food each day, which is a good sign. When they start the Bite, Chew, Swallow portion of her time, it helps if she is interested in food and hungry for real food. This is definitely a good sign.
Lastly: A friend of mine, someone who I haven't been the best about keeping in touch with, but they still follow me on Facebook and keep up with our lives, came by for a visit. Ken was great. He listened, shared what was going on with his family, and was just someone to talk to, vent, share, laugh with. It was a great little break from the schedule we are getting into here.
Today was a good day. It was great to know that Amelia's pains and struggles are already reaching and hopefully helping other people. Maybe Amelia won't be the one to go on and do something amazing in her life, but maybe her experiences will help someone else who does something amazing... Whatever the case may be, God is at work in her life, and as a father, I love to see that light shining out of her. Thanks all, and good night! Hoping for continued growth and improvement and thank you all for the love, prayers, good karma, and good wishes sent our way.
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