So Grant was having a hard time getting to sleep the other night and Jason and I sent him back to his room about a hundred times. He eventually stayed and we heard some commotion and talking, but didn't think much of it because we really wanted to watch an episode of LOST on DVD. When I went to check on them later, Grant wasn't in his bunk, but had crawled up to Kyle's. It was very cute and the next morning Kyle said "You know Mom, all Grant wanted last night was a little bit of company, so I let him come up to my bunk and I read him stories and we fell asleep together". It almost makes up for the rest of the time they spend trying to kill each other. Actually, I would say they get along about 75% of the time. They both agree that they love Ryan though. They both love to hold him, Grant will set down and say "Give him to me" and "Oh, baby Ryan, you are my best friend". I let Kyle do a baby yoga/massage dvd with Ryan the other day and he took it so seriously. Ryan for the most part loves it, but sometimes gives me a look like "are you kidding, leaving me alone with these two". I actually took all three of them to the farmstead last Friday. I always feel like taking all three on a successful outing is a bigger accomplishment the anything I have ever done previously. It was a really nice day and Ryan had taken a good morning nap and ate well, so I decided to just go for it. We all had fun, at least until we were watching the cow milking demonstration and I guess out of empathy for the cow (warning, stop reading if you have never been a nursing mom) my milk let down.
In other news, Ryan was approved to receive the Synagis shot, which is a relief. I got two letters from the insurance company, one saying he was approved the other saying he wasn't, so I called and they said he was but I am still keeping my fingers crossed. He has his 4 month checkup on Wednesday and a followup with his cardiologist on Thursday, so it will be a busy week.
1 comment:
Brandi,
Here the the email responses I got after asking two email group I am on if anyone had dealt with diaphragm paralysis...
I'm not sure how old this boy is, but Bailey had a paralyzed diaphragm (right) after surgery at 3 month, then again at 14 months. The function does seem to have recovered, but it still isn't completely normal. She is 2.5 now and repaired. I would be happy to email with the family.
Thanks
Heather
hrcase74@yahoo.com
Mother to Bailey - 03/09/06 with L-TGA, VSD, pulmonary atresia and hypoplastic pulmonary arteries with MAPCAs
Christina, John had a hospital roommate who was 5 when John had his first surgery in 1990. Jason had the same thing happen to him in December 1989. In Feb 1990, he was still in the hospital for infections but we offered to let his parents have a break and said that we would entertain him. We started playing with him and making him really laugh hard. Miraculously, the drs said his diaphragm started working again. I can' t guarantee it will work for everyone but it is sure worth a try!
Hope this helps.
Michelle (mom to John, 20, tof repair Jan 1990, pulmonary valve replacement August 2005)
My daughter has a floppy larynx and trachea and a paralyzed vocal chord. The surgeon told me that sometimes the left chord nerve gets nipped during surgery. That may not ever heal. Her larynx and trachea are supposed to firm up over time. Some of this could be from birth or surgery. We don't really know.
Marty
mom to Katie--Shone's syndrome (HLHS Variant)
Good Luck!
Christina
Jacob's momma
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