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Unfortunately Anya has not yet been diagnosed and it sounds like it
may be atleast several months, perhaps much more, before she is but it sounds like she may have Mitochondrial Disease.
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Current conditions:- Hypercuteness:
although common with kids her age, we fear she is excessively cute
- Chorea (movement disorder, see video)
- Cortical Dysplasia (a brain growth anomaly, although still debatable)
- Dysphagia (can't swallow) high risk for aspirating
- G-Tube fed (she is fed via feeding pump through a port directly into her stomach)
- Potential
tracheal myalgia (under developed or damaged trachea) - no longer a concern
- Constant upper respiratory congestion,
excessive mucus
- Developmental delay (minimal head control, doesn't grasp or reach, poor eye control)
- Fluctuating
muscle tone (she is typically rigid or limp, although seems to be converging to normalcy)
- Frequent excessive gas
(vented through g-tube) - has gotten a lot better since starting new food
Symptoms that seem to have subsided (we hope) - Every
7-10 days she has vomiting spells every 15 min. lasting 12+ hours.
- Frequent fevers typ. 100-F (38.5-C) as high
as 104-F (40-C) -haven't seen this happen for months
- Highly irritable, possibly/likely in pain - no more pain - seems
to be really happy for the last couple months
- Frequent constipation (up to four days) - since changing to better
food no more problems
- Sleep deprivation (several occurrences each week of 24hr + wakefulness) - has gotten regular with
her sleep, even taking really good naps almost every day
Anya has suffered from:
- Intestinal
malrotation surgically corrected w/ Lapp bands
- Severe Reflux treated with Nissen Fonduplication procedure
- Hypoxic
ischemic event of unknown duration on day 6 of life
Anya
may have: |
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Did you hug your kids today?
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