Month of updates

Okay, where did the last month go?!  It was another busy one.  After Owen's birthday we traveled to Texas to visit family and friends.  We spent some time in Houston and then went to Dallas for the weekend.  Allen was a groomsman in a good friend's wedding.  It was a great trip.  Callie traveled well as usual.  Things went smoothly except for when she pulled out her NG tube moments before arriving at the wedding rehearsal.  But on a good note, we enjoyed the evening tube free!  Here are a couple of tube free pics:

Callie is continuing to gain weight and thrive.  I am so excited to report she broke 20 pounds this week!!  Amazing!  That is about a 4 pound gain in 10 weeks!  She seems so strong and active lately.  She is making progress at nearly every therapy session.  She is creeping her way around on her tummy and is now taking assisted steps!  She has really gotten the hang of walking in Owen's old walker.  When I first put her in it a few weeks ago she would just stand with her legs locked.  Now she is moving intentionally all around the house.  She is a little reckless, but can maneuver the walker forwards, backwards and around things to get to where she wants to go.  She also loves to walk around if you hold her under her arms.  It breaks your back, but is totally worth it.    

It seems like things are clicking lately and I really want to take advantage of this time when she is nourished, motivated and seizure free.  I have been working hard to get the county's early intervention program to provide PT in our home.  For the last year they have only provided OT and then recently twice monthly developmental therapy.  We have a wonderful therapist who incorporates PT into her OT sessions, but I would really like to have separate PT so that her hour of OT can be solely focused on fine motor and feeding skills.  I am thrilled to say that we were just approved today and she will begin receiving an hour of PT each week!  While this makes her schedule extra packed especially considering we are starting weekly speech therapy this month, I am happy about this addition and hope it helps her crawl on all fours and walk before we know it.

So this is our weekly therapy schedule:

Monday -- private PT

Tuesday -- private Speech, county developmental therapy (every other week)

Wednesday -- occasional private Feeding therapy

Thursday -- private OT, county PT

Friday -- county OT

When we add in doctor's appointments, you can see how busy our weeks are.  FYI, I have her enrolled in both private and county therapies because the approaches and exercises are different.  There is some overlap, but the private sessions take place at a facility with equipment we do not have at home.  The county sessions at our house use items in our home and the exercises are easier for me to incorporate into our days between appointments.  Am I going overboard with therapy?  Someone please tell me [nicely] if so.  

One additional event worth noting... Callie had a follow up endoscopy and impedance test this week.  It was an outpatient procedure at INOVA Fairfax.  It was hard seeing her put under again, but at least I knew what to expect this time.  Regardless, I still shed a few tears.  The procedure was quick and she came out of it with two tubes -- one in each nostril, poor thing.  The second tube was for the impedance test.  The tube attached to a small box which recorded any reflux activity for 24 hours.  Regarding the scope, our GI doctor advised the initial findings looked good.  Her esophagus looked much better.  Biopsies were taken which will be able to confirm if the number of eosinophils is back in the normal range.  The full results of these tests will be available at our big appointment with the EE team on June 20th.  

I think that about sums up the last month!