Happy New Year!

Wow, what a year!  I am so relieved this one was better than the last.  2010 started as the best year ever after Callie's birth and ended as the worst year ever after her diagnosis.  2011 was much more positive and better all around.  We definitely had our ups & downs and tears of both joy & sorrow, but overall...

Merry Christmas!

Hope everyone had a very Merry Christmas!...

EoE, AFO, ENT Updates

The week is only half over, but it has been an eventful one.  There is always something going on with little Miss Callie! EoE ClinicWe went to Fairfax on Monday morning to meet with Callie's EoE team.  The meeting started by reviewing her last endoscopy and biopsy results.  Everything was clear.  This means apples, bananas,...

New EoE Opinion

Callie and I took a road trip to Baltimore yesterday afternoon.  We had an appointment to see THE allergy expert Dr. Robert Wood at Johns Hopkins.  I booked the appointment about 6 months ago for a second opinion of how her EoE is being treated.  We took Callie to Hopkins last year for a second opinion with a neurologist, but...

ENT, Sleep Center, and Progress

Last week was another busy one that included 8 appointments for Callie.  In addition to her therapies, she saw her ENT and went to a consultation at a sleep center.On Tuesday we saw Dr. Silva, her ENT.  We were following up to see if she still had fluid in her ears, which I knew she would since she has had congestion/cold/cough...

Therapy Pics

I finally found shoes to fit Callie's AFOs today!  We put the braces and shoes on her for the first time at PT this afternoon and it took two therapists to get them on.  Callie was such a trooper! They added ankle weights to her for part of the session.  She was still all smiles.   Here she is in OT recently: And...

AFOs & Button

We spent the good part of another day in Fairfax this past Friday.  Our first stop was Orthotic Solutions to pick up Callie's AFOs.  I was surprised that it took over an hour to tweak their fit.  The orthotist added straps and several pieces of foam to help them best fit Callie.  Unfortunately we haven't been able to try them yet because they won't fit into her shoes.  I spent...

Birthday girl on the move!

Callie is now climbing stairs!! ...

Happy 2nd Birthday!

Happy 2nd birthday, sweet baby girl.  Baba, Owen, and I love you so much!! ...

Day in Fairfax

We spent most of yesterday in Fairfax, a destination 35 minutes from home with no traffic and 1 hour+ from home during rush hour.  I made the mistake of booking the first of three appointments there at 9:00 AM.  I was sweating it all they way through the rush hour commute, but am relieved to report we made it exactly on time.  Our...

Adapted Tricycle

During Callie's PT session at home yesterday and we were talking about how she keeps her legs stiff in extension.  She is cruising nicely around furniture, but looks a bit like Frankenstein and does not bend well at the knees.  We were trying to think of ways to break up her extension pattern and her therapist asked if I had a tricycle...

Happy Halloween!

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Busy Week

Where have the last few weeks gone??  Time is slipping by quickly.  In fact, I am not sure where the last year went.  It seems like just yesterday, but a year ago this week Callie and I were in Seattle seeing Dr. Dobyns!  I would love to take her back to see him again.  Maybe sometime in another year or so when she...

Crawling!!!

It is with great joy and excitement that I can finally share the news that Callie is officially crawling!!  She has been army crawling since May, but has always had trouble getting up on her hands and knees.  This is an incredible accomplishment for Callie because less than a year ago she was so stiff that we could not even bend her into the crawling position!  Now she can transition from sitting, to side sitting,...

Working on walking!

Callie worked hard at PT today...

Feeding Tube Awareness

One of my special mom friends recently shared a link to a site about feeding tube awareness.  I have been exploring this site and am finding it very helpful.  There is also an associated Facebook group and I have enjoyed connecting with some other tubie moms.  I even found some who have EoE kiddos and am looking forward to...

Crystal Ball

This week we had a follow up appointment with Dr. Im, Callie’s physiatrist or doctor of physical medicine.  At our last appointment we discussed ordering ankle & foot orthosis/braces (AFOs) to help her learn to walk correctly.  He said we would probably order them once she is pulling to a stand.  My main question for this...

G Tube Update

It is hard to believe Callie's procedure was almost two weeks ago already.  Things have been going very well!  The G tube is definitely better than the NG tube!  It is so nice to no longer struggle to keep the tape on her little face.  And I like how the tube is now out of sight.  Sometimes I forget about it.  We...

Going Home!

Yesterday went pretty smoothly, for a while.  Callie showed a little discomfort, but did well for the most part at 10:00 during her first formula feed through the new tube.  That was encouraging.  Then she did great at 2:00 during her second feed.  At that point I happily started packing.  A nurse came in to complete...

G Tube

Well, our little girl now has a G tube.  We checked into the hospital yesterday morning.  She was sedated while I held her in my arms.  It never gets easier... I teared up as she slipped away and then cried in the waiting room.  They performed an endoscopy to check the health of her esophagus and then placed a PEG tube....

NG Tube Reflections

As Callie's time with a NG tube thankfully comes to an end, I have been thinking about our experience with it over the last 5 months (wow, I can't believe it has been that long).  Here are a few random thoughts that have come to mind: I dreaded getting the ugly tube at first mostly because it was the first outward sign of...

Little Daredevil

We have a little daredevil.  Well, we actually have two of them, but I am writing about the littlest.  I mentioned before that Callie loves to swing (the higher, the better).  She also gets a kick out of being bounced & thrown around on the couch and enjoys any other gentle roughhousing you can come up with.  She laughs...