Ever feel guilty cause your little one is doing well?
I heard of a little one that died and my heart crumbled.
I have been praying for and thinking of little Joel. He is my friend’s son. He has struggled of late. I was so afraid for him and his family. He is back in the hospital. Be strong little one.
Meanwhile, Bell is doing well. It is Spring here. She wants to be outside. Which is wonderful. It means she is feeling well. It also means occasional oxygen. It means tons of breathing treatments. It means secretions headed to green. It means taking out her trach and cleaning it every day because we have plugs. It means lots of CPT. It means a trach that smells like old gym shoes. It means more antibiotics. But this Spring I am taking her outside. She loves it!
Feeding – she’s not so interested. Tasting, yes. Actually working, actually swallowing, not interested. In her defense it’s harder when the secretions are increased to work with saliva and food and get it down into the tummy. Oh well. It’ll come. She’d rather play in it anyway.
Playing with her mirror – her absolute favorite toy!
Two appointments this week. First for labs. The lady looked at her and wouldn’t even try. So we went somewhere else. But good came of all of that. The other lady usually does her, so she knows how hard a stick she is. She wasn’t up for it that day. We went to the second place and they feel in love with her. They got her in two tries. We’ll be going back!
Second appointment – eyes. Last year they were really bad, this year, the doctor says they are just a little worse than normal and he’s not worried yet about the eye that sometimes crosses. And we don't have to come back for a year! Wahoo! OT meet us there and we did our therapy while we waited. Bonus!
A trach mask – we actually got to use one! She was off the vent when she needed her neb treatment so I used the trach mask. I feel like we have hit another milestone!
My adorable, wet, all nice and clean, baby Bella. She’s so cuddly right out of the sink!
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