Last night was difficult...Lydia had two seperate seizures and cried for a while in between...she was clearly very uncomfortable. I called Dr Hollman about it today. She said that the crying and limb-shaking was probably post-seizure activity. She said, "It just makes her feel bad." NO SEIZURES TODAY!!! She seemed mostly back to herself...though she slept a little more than usual...which is already a lot. I also talked to Dr Hollman about the possibility of discussing a feeding tube again...if only for the reason of medication. She now takes 5 doses of medication today...for thyroid, reflux, and seizures. She will probably add at least 2 new meds with the mito diagnosis. Medications by mouth are not a fun thing for Lydia...she usually gags, gasps, chokes, etc. Martin and I agree that a feeding tube would make that much easier, not to mention that we could also supplement her nutrition. Dr Hollman agreed that it was reasonable. She said that she didn't consider it inevitable (which would make the decision much easier), but she said that she would support the decision if we were comfortable with it. We'll add that to our list of questions for Dr Superneau tomorrow and follow-up with Dr Alberty and a surgeon if we decide to move forward with it.
Our appt with Dr Superneau is at 8:00...I'll try to post an update by the afternoon. Thanks for keeping us in your thoughts.
2 comments:
Continued prayers for strength and courage as you find out the details of the diagnosis. Give Lydia hugs and kisses from me!
Melissa Moran
Mandy,
I've been wondering about you, Martin, Audrey, Elise, and Lydia. I'm so glad Tiffanie re-sent your blog link. I've subscribed, and will also put it on my desktop so I can keep up-to-date with you as well as Lydia's progress.
I would love to go steal you away for a couple of hours this summer- just to escape and have some chat time over a cup of coffee (... or some other yummy drink! - whichever mood strikes you at that time.) But know that you are a treasure of a person - to your children, family, friends, teachers, and I see from reading you even inspire people you don't even know. I get so overwhelmed at times, and reading your blog postings, you have sooooooo much on your shoulders, and I know you must feel beyond overloaded many times. I'm glad you have this blog for so many reasons. Although the severity of the diagnosis is not exactly what you wanted to hear, I'm glad that you at least have some answers now, with the hope of learning more about it as you go.
LOTS of love and prayers to you,
Alicia
Post a Comment