Therapy progress and setbacks

So everyone knows our whole life is about three steps forward and one step back.  Madilyn has earned herself a two week break from one of her physical therapists because she has been so uncooperative.  This was very upsetting to me personally but it has also taught me a valuable lesson.  Everyone needs a break sometimes to breathe and reset.  With Madilyn we are constantly pushing and encouraging and using every moment we can as a teaching moment.  She has therapists/home visitors 3 days every week and 5 days every other week, this is not including medical appointments.  I think her outright rebellion was her way of telling us enough already.

I took the break reluctantly and even eased off at home and just let a few days be lazy (for lack of a better word).  If she didn't want to put the blocks in the bucket or play at the music table I didn't make her.  I didn't make her do "just one more" before letting her scoot around the floor like she loves, and I didn't try sticking food in her face praying she would finally eat something every time she turned around.  This was a very difficult thing for me to do, but it paid off!!

She has suddenly, after six months of trying and encouraging, decided to go forward in her walker and when she hangs on to our fingers and pulls herself to standing she has started taking a few steps!!!  I can also put her in her highchair and put food on the tray and she's starting to put it in her mouth.  She is actually taking bites all on her own of the cheese puffs!!  I'm so excited.....she just wants to do it herself, when she's ready.  She's asking to go bye-bye on days when we're home all day and talking more and more.  It absolutely melts my heart and makes me cry rivers of happy tears whenever our little Peanugga does something new.

That was the three steps forward............the nasty C-Diff infection is the one step backwards.  C-Diff is a highly contagious intestinal infection that was caused by the antibiotics Madilyn took at the beginning of October for a double ear infection.  It causes nasty diarrhea, gas, cramping and an in general unhappy baby.  It has made for some very long nights as that is when she gets her feeds (her main source of nutrition).  Her j-tube feeds go directly into her infected intestines.

We are extremely thankful that after just a few days on antibiotics we have seen a complete turnaround.  She is sleeping better which is making for much better days too.  We are very fortunate because C-Diff can be very difficult and can lead to dehydration, hospitalization, kidney failure and sometimes it can be deadly.

If I never had to hear "that could've killed her" again I'd be a very happy grandma, unfortunately for me I don't see any time in the next few years that I won't have to hear that.  Madilyn is getting stronger every day and some things aren't quite as scary as they used to be.  I do seem to have the bad habit of taking my moment of meltdown with each new infection or setback and then I brush myself off, take a deep breath, pick my positive thing to focus on and keep going....