So much to report. Bella has had an up and down time since our last post. Becky has been consistent about getting therapy accomplished here in the home as our sweet, sweet therapist has been out sick over the last couple weeks. Bella lasts through the majority of the exercises and stretches, but still has trouble with keeping her head upright and trunk control. She kinda folds up like a taco, especially when her legs straighten out-almost as if it's a involuntary response.
She Cu's, laughs, cries pretty good, she can roll side to side and even side to abdomen occasionally. Shes still having trouble with focusing appropriately with her eyes, but I do know she is fixing on objects a bit better. We trialed her off the night time O2 and she did well, but the O2 sat probe thingy will not stay on her foot, when we asked for a larger or band-aid type one from our home O2 company, they sent us one that doesn't fit...buncha goobers.
Anyways, we now leave the cannula off because it was causing her some stuffy noses (even with the bubbler) and so now we have a blow-by set up of a simple pedi-mask that we set close to her. The first night we used that we also had the O2 sat probe connected and she did awesome! Now we just utilize the blow by at nighttime.
Got our 1st snow in GJ yesterday, it was pretty cold all night and throughout today. BRRRR! Currently it's 25 degrees outside. We are trying to get the ducts and registers blown/cleaned out before we fire up the furnace, but we are having some scheduling conflicts.
Just so you know, we are headed to SLC this week for a follow up at Primary Childrens in the neuro department. Scheduled head US, then potentially an MR scan, then depending on those results, a potential procedure and/or surgery for a shunt placement. We pray for the right ventricle in her head to be normalizing and for her to not need any further surgeries, poor baby.
She has been a little more fussy, puking a bit more often-we think closely related to the reflux and she is just not gaining weight. She is loving some baby food at least once a day, trying twice a day, but is still having concerns with constipation. Roughly every 10 days she needs a pedi-enema. They are not fun for her as she cries throughout the procedure and the after effects.
So....we move forward in faith-hoping for the best-praying for the best and God's will to be done. Thank you all once again for prayers and best wishes and your service to us in any capacity. We love you!
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