Since I’m up checking on Ally, thought I’d send a tiny update on my mysterious child. Ally had a good end to her night happily watching her movies in her room. Billy did her breathing treatment (thank you sooo much) and I layed down early with a headache. She did fine with her treatment and was sating in the mid to upper 90s for o2 and no fever.
Just now her alarm was going off, so I got up for a treatment. She is actually satting upper 90s, but the alarm went off since the sensor wasn’t picking up properly. She has no fever and her HR is great. As I type, she is vocalizing since I accidently woke her. Gonna see if she falls back asleep or I might go ahead with an extra treatment and let her watch some cartoons. Luckily we have Nurse Lucy today, so I can maybe take a small nap after my annual meeting with DSCC (Division of Specialized Care for Children) and Ally’s wheelchair/stroller delivery. A tray was built for her size 2 stroller and I’m excited to see it and transfer all her equipment. Just hope this headache goes away. It’s probably just stress, hopefully nothing more.
I’m super confused if she really needs the new antibiotic and to keep doing her Tobi nebs for 28 instead of 14 days. I think the non-generic name of the new antibiotic is bactroban and if her MRSA is flaring up it would treat that and I’m not sure what else. I really don’t want extra antibiotics if she doesn’t need them, but didn’t want to start too late and end up in the hospital. I may call the doc today and see. He’ll probably think I’m a bit crazy when I describe how well Ally seems to be doing now compared to yesterday afternoon.
She’s still talking, so I’ll go ahead with an extra treatment. It won’t hurt her other than her pattern of sleep being off.
Have a good day everyone and thanks for the prayers and well wishes.
Tina, Ally and Family
PS — Are you voting everyday, till the end of May, for the two SMA organizations in the Pepsi Refresh contest? Be sure to go to www.RefreshEverything.com and search “SMA” in the top corner. Sign in using facebook or your email and vote for both. We really need help to get into 1st or 2nd to win $250,000 for SMA research. Thanks in advance for voting and also spreading the word!!!!
Angel Ally Blog - SMA Type 1 
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