Well, we made it through the weekend. We had a rough start... Billy had a hard time after the Botox shots. He had a tough time swallowing and breathing, he almost seemed to aspirate. He cried a lot too, which didn't help. He had major reflux, so we took it upon ourselves to stop the drip feedings at night. Our executive decision paid off, we started feedings as soon as Billy (Dad) woke up and shut them off a little after midnight, and we all got some sleep.
Today, he did much better. We are already seeing some relaxation in the arms, so I took advantage and did some range of motion in his arms a couple of times today. He didn't cry too much and we were able to move him into the recliner in the living room for a few hours. He even coughed a few times on his own again.
Monet had a good weekend, on Friday she had a girls night out with my friend Tracy and her daughter. They went to the Elephant Bar and to the movies. Saturday, she spent some time with her Uncle Ron (while Aunt Rene helped me with Billy Boy), then I took her to a classmates cowgirl birthday party. Sunday we played bubbles, made some puppets, and visited with Pete and Leisa (Thanks!)
We have five appointments coming up this week, so I will keep everyone posted.
Today, he did much better. We are already seeing some relaxation in the arms, so I took advantage and did some range of motion in his arms a couple of times today. He didn't cry too much and we were able to move him into the recliner in the living room for a few hours. He even coughed a few times on his own again.
Monet had a good weekend, on Friday she had a girls night out with my friend Tracy and her daughter. They went to the Elephant Bar and to the movies. Saturday, she spent some time with her Uncle Ron (while Aunt Rene helped me with Billy Boy), then I took her to a classmates cowgirl birthday party. Sunday we played bubbles, made some puppets, and visited with Pete and Leisa (Thanks!)
We have five appointments coming up this week, so I will keep everyone posted.
1 comment:
Hi Mom, Dad, Monet and BIlly!
Great to hear that the Botox injections are working somewhat. I pray that his breathing and feeds are going well.
I picked up the toys from Cardiology office. I have to admit i walked out of the hospital in tears. Tears of sadness that Billy cant play with them anymore and tears of joy that I was going to bless refugee children in Sudan with Billy's toy cars. I was so amazed that your family could think to get things together to touch children's lives in Sudan when you have your own challenges everyday. It shows that God is giving you the strength. You are an amazing family and Billy Boy is so lucky to be blessed with parents and a sis like you all. Love you guys! Im praying for you.
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