Eli had Speech/feeding therapy and occupational therapy this morning. He did pretty good at speech. They worked with music (incredibly loud) and she did alot of hand movements while singing along. She helped do some hand over hand signing basics with him and he wasn't super fond of this, but didn't completely refuse. He wasn't so good at OT. He had a complete break down crying fit which is so out of character for him. He never cries, and this much was very shocking. We didn't get much accomplished at all.
Then we immediatly headed over to his pulmonologist. She showed us the sleep study results and talked to us about what it all meant. He is waking over 21 times an hr and having 4.6 sleep apnea spells an hr on average. There were sometimes where he simply didn't breath, some obstructive breathing, and alot of breathing where it just wasn't enough to do good, shallow. So she is going to try CPAP and see if that will help with his sleep and energy levels and such. He will go into the PICU on January 3rd and stay an overnight to get everything situated and fitted.
She also talked with us about the upcoming holiday. She will be out of town, our pediatrician will be out of town, 1 of our hospital docs is on maternity leave, and our cardiologist is out of town. She said if he gets sick she just wants him admitted to the PICU, don't pass go don't collect $200, kind of thing. It's a bit comforting and a bit disturbing that all of the doctors talk and make plans for their times out of office and such.
Eli is still running a low grade, day 2, but no other symptoms. Hoping it's just another fever of unknown origin, but to early to tell.
Ben is a bit better today. His fever was back up last night and he slept in our room again so we could do meds and breathing treatments. He's had a touch more energy today and has drank more, even ate a bit for lunch. He laid around alot, but seemed a bit better. Hoping to try him in his own room tonight and see how he does.
Bob and I went out to dinner tonight and then did our grocery shopping. At dinner, I had my grumpy jealous of another family moment. There was a family with a young boy who was probably 8 to 10 months old. He was sitting in the highchair, playing, and gabbering, and eating baby food, and learning to drink from a sippy cup. Made me super grumpy. I hate feeling that way but on the other hand I can't help it. Frustrating.
In closing I will post a quote that I "stole and adjusted" from another tubie friend. She posted this morning and tears immediately came to my mind. She found the words for what I think and feel. With permission I would like to share it here as well.
"Each holiday, each month, each week, each morning and each minute with my Tiny man is a special day. To some, Holidays here might look excessive...for me it is just another opportunity to see his smile and hear his laugh ~ my time with him may be limited and I will always seize the day. "Normal" parents don't ever have to stop and think that it may be their last Christmas, or Birthday...for us, it's reality."
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