Making Friends and Progress

Eisley has nearly completed the second week of her feeding program at MMI.  In these few days she has managed to win the hearts of many of the staff.  Lots of people stop to chat with her as we come and go - many I don't even know yet.  Someone came to tell me tonight that the highlight of her day is the time she gets to spend with Eisley during her breaks from feeding sessions.  Yep, my girl is amazing and definitely has a purpose!

We had a goal meeting with Dr P and the staff, after completing her evaluations, they had lots of good things to say about the progress we have made on our own at home in the last few months.  Eisley doesn't seem to exhibit a lot of inappropriate mealtime behaviors.  Often kids are screaming, kicking and crying at this point in the sessions.  However, Eisley does have quite a few obstacles to overcome in the area of her tongue thrust and lack of oral motor control/skills.  They felt a reasonable goal to achieve in the next 8 or so weeks is for Eisley to be taking in 20-30% of her needs by mouth.  The program is about 8 weeks, just depends when Eisley reaches her goals that she would graduate to weekly sessions for the following 2 - 3 years.

I knew the goal wouldn't be 100%, but was a little disheartened to hear they had such low expectations.  We were sent home to think about it and review the paperwork.  Prior to starting the program we completed a 3 day calorie count.  So I asked them to figure out how much Eisley was taking in by mouth before we started, because, unlike most kids, it wasn't zero.  Low and behold she was getting 30-50% of her total needs already, so we increased our goal to 60-70% to graduate from the program.  That's more like it - expecting the best, not accepting less!

During this we've been able to reschedule PT for early Monday mornings, so Eisley doesn't miss out on therapy.  And PT from MMI has come to see her too.  MMI's PT is very into research and reading up on the latest and greatest.  So they are going to see her daily, M-F, for treadmill therapy (harnessed or held above the treadmill to learn the motion of walking) for 6-8 minutes.  How awesome is that?

I'm fortunate to work on the same campus as MMI, so I can slip over for my lunch to check on Eisley on days I work.  When I am off Lexi and I usually stay for a session or two and head home for a nap.  Lexi sure likes to check out the play areas and visit my coworkers when we have time.

The biggest challenge for us at home has been liquids.  Eisley was very resistant to them.  If she would take them, she just didn't have the lip closure or oral skills to manage the liquid in her mouth - it all poured back out.  MMI figured out quickly the same issues we had at home and decided thickening her liquids was probably the best thing for now.  The big change has been Eisley is much more receptive to taking a cup.  Today she took 3 ounces of pediasure between the snack and dinner sessions.  Amazing progress since we could only get a teaspoon or two down.  I am excited to see what the next few weeks bring!