God forbid, both. The genetics are very complicated and we hope to have more info next Thurs. We will also be meeting with the surgeon at the end of the month about having a feeding tube inserted. Mac's swallowing is hit and miss more often and the meds she takes often smell and taste awful. When swallowing is tuff already, it doesn't help to throw in something that tastes so bad it could make you gag all by itself. She will continue to eat even with the tube, but it will be mainly to ease her daily life on taking meds and will be a back up if she has a hard day swallowing food. It will be a full-time necessity eventually. Considering all, she has been the best patient and has really been tough.
Friday, July 14, 2006
Medical Update July 14th
Macayla's genetic workup is back. We will go in next week to get more details, but the gist is that she has both copies of the CLN 1 gene from Jenny and I but each copy is mutated in different places. This means that Jenny and I carry two different mutations of the same gene. This helps us in isolating Jacob's genetics to see if he carries either copy or none or,
God forbid, both. The genetics are very complicated and we hope to have more info next Thurs. We will also be meeting with the surgeon at the end of the month about having a feeding tube inserted. Mac's swallowing is hit and miss more often and the meds she takes often smell and taste awful. When swallowing is tuff already, it doesn't help to throw in something that tastes so bad it could make you gag all by itself. She will continue to eat even with the tube, but it will be mainly to ease her daily life on taking meds and will be a back up if she has a hard day swallowing food. It will be a full-time necessity eventually. Considering all, she has been the best patient and has really been tough.
God forbid, both. The genetics are very complicated and we hope to have more info next Thurs. We will also be meeting with the surgeon at the end of the month about having a feeding tube inserted. Mac's swallowing is hit and miss more often and the meds she takes often smell and taste awful. When swallowing is tuff already, it doesn't help to throw in something that tastes so bad it could make you gag all by itself. She will continue to eat even with the tube, but it will be mainly to ease her daily life on taking meds and will be a back up if she has a hard day swallowing food. It will be a full-time necessity eventually. Considering all, she has been the best patient and has really been tough.
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