Bella is such a happy little girl! She is getting more and more energy. She just loves so much!
We went downtown twice this week. Some friends of ours, Greg and Kristin Lyman, found us today and brought Bella this cute butterfly balloon! So thoughtful – thank you!
Results from the docs/tests: anemia, she continues to lose weight for the 4th month in a row, consolidation in her lungs behind her heart, heart function not significantly different than 3 months ago (mild regurgitation in valves, right side a little larger than normal, and severe pulmonary hypertension. She also has a misshapen valve, but it’s working), she won’t eat for many years, and she has the gene that predicts Celiac disease. They said it doesn’t mean she has Celiac Disease, but 95% of patients with CD have these markers. She is currently on a gluten free diet, so there is no problem right now. Her decreased emesis does seem to coincide with the time we changed formulas, so a lactose sensitivity is suspected. Her Upper GI, though, was great. She didn’t reflux – a miracle. :)
We have been getting a lot of rain – thank goodness for xopenex. I’m grateful that it works so well. I am also working on decreasing her robinal. Her secretions are getting so thick, she’s getting mucus plugs.
So they don't know why her PH is still so bad, even after trach and venting?
So what are her symptoms of allergies? I think Jax is getting allergies. He coughs and is more junky, its making me crazy! Zopenex is working well for you for that? I'm trying to decide what to ask my pulmo for. One said atrovent and an inhaled steriod like flovent, which he already gets.
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