Callum - following Monday's MRI, it was found the sizeable 2cm sq abdominal mass isn't a bowel duplication which would have required abdominal surgery, but is likely a cyst which we're hoping they can remove laparascopically. Other than that, Callum hasn't a day's sickness in his 6 months. Pretty amazing. And prune juice is definitely countering the negative effects of a more solid diet. Jason took him in for the crack of dawn procedure and needless to say Callum screamed the hospital down when they tried to insert the IV for the general anaesthesia.
Reuben - waiting to hear if the 2nd stage urology surgery has been successful and re plans for the 3rd stage descension this Summer. After his recent bout of pneumonia, he's been doing great, though he's still pretty juicy from his trach. Giving him medicines for allergies such as Benadryl or Claritin on a daily basis have almost completely dried up his nasal secretions, the twisters as we used to call them where we would endlessly pull at what seemed like a never ending river source. Had a long day yesterday: morning of OT followed by Children's with his paediatrician Dr Charlie and Endocrinology who said that growth hormones wouldn't be approved by the FDA despite his short stature as he passed his 3 hour growth stimulation test and his length is in the 10%. So Endo will be a wait and see with yearly appointments until things really start to kick in in the puberty years. That said, the testosterone shots definitely did the trick! Need to see ENT again soon re the future of his trach (which feels like it will be a long journey) and how we can help his vocalisation (which is almost zero so any advice on that much appreciated). The trach of course gets easier with time; it means carrying around a lot more gear, sure, and needing supervision at night, but the actual suctioning part just comes easy after a while, especially when you learn that tickling Reuben like crazy will cause the bubbling mass to come out of its own accord. And what else? Still has a heart murmur, lungs are in pretty good shape, developmentally he's excelling, constantly practising his numbers 1-15 and his alphabet and his formation having greatly improved since he got his glasses, his fine motor development is improving, enjoying his speech therapy (or the therapist at least), physically he gets stronger week on week with his ability to walk about 12 steps independently and waving at everybody he meets which raises so many smiles every day. Isn't that lovely! He's still Gtube fed and we've put oral feeds on hold pending a swallow study as I fear he may have had aspiration pneumonia, where food would have migrated into his lungs due to an uncoordinated swallow. Meanwhile, I'm looking at slowly implementing a blenderized diet (the consistency of baby food), what will be a carefully measured calorific intake via the Gtube, so we can gradually move away from the formula to a healthier, real food diet. Hoping we can go back on oral feeds again as much time has been lost.
1 comment:
great updates
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