No news is good news

Obviously, I am a horrible blogger as it has been over two months since my last post.  Or, something like that.  I am not sure why it's been so long. We always do feel busy, but that is nothing new.  I know there are a few of you out there who have expressed an interest and actually do use the blog to get your Samantha updates.

Amazingly, it's all good.  Samantha eats by mouth the entire day and only receives her tube feeds at night. (We also provide her hydration through the g-tube by giving her lots of water boluses throughout the day).  I expect the g-tube will be around for a long time, and I think we are all ok with that.

Samantha has been off of her vent completely now for over two weeks and all of her numbers continue to look good.  She's walking and talking better than ever. Her stomach seems to be moving things appropriately.  Her last labs all looked as good as they ever have. So yes, she's doing really well.

Samantha's doing so well, in fact,  that there is talk of removing her trach at some point soon.  If she doesn't need the vent (and right now she doesn't), and her lungs and airway are fine (as they always have been), there is no reason for her to have a trach.  To be honest, removing the trach scares me because at some point we may have to put it back in.  However, if there is no need for it at this time, it is an infection risk and should come out.  Val and I aren't ready to rush it out just yet, and want to make sure Sam can go a few months without any vent use before we make that decision.

Samantha has an MRI scheduled for this Friday, her first in over a year.  I am not looking forward to her being placed under general anesthesia again. She seemed to do well with it the last two times. But she was in the PICU at that time and not moving around much anyway.  I'm not sure how it will go to have her discharged the same day.  The hospital is taking her case seriously, and I know they will use every precaution necessary to ensure the best possible care for Samantha.  I hope the results of the MRI will give us a clearer picture of how much the disease has progressed in her brain (if at all).  In addition, perhaps it will provide us some insight on how quickly to remove the trach.

Sam continues to take EPI-743 and as always, we believe it is truly helping her.  We also believe her g-tube and all of the hydration/nutrition it has provided her is helping as well.

Samantha continues to be her funny, loving, smart, adorable self. Val and I enjoy having her visit with our families as much as possible and are still loving being in the city with her. The kid loves a good party.

Sammy has come so far since the dark days of February. This time last year I couldn't have imagined what happened in February was going to happen.  The last year has been a complete roller coaster of downs, and now ups.  We'll take the ups and not try to think too far ahead.  One day at a time continues to be our mantra.



Sorry again about the lack of updates.  Hopefully, my next post will be much sooner than two months from now.

Until next time,

Monica