Neuro update

This week Callie had a check up with her neurologist Dr. Pearl.  I have said it before and I will say it again... I really like Dr. Pearl and am so glad Callie is under his care.  Despite being the last scheduled appointment of the day he took his time with us.  He was genuinely happy to see how much she has grown and pleased with her development.  He was thrilled that her recent EEG was clear and that she has now been seizure free for 10 months.  We reflected on how much of a difference a year makes.  One year ago Callie had infantile spasms and we were making tough decisions about her medications.  Now she is seizure and mostly medicine free (except for Prevacid).  We talked about seizures and he said the worst is most likely behind Callie.  Yes, she will probably have to deal with them again, but they will probably be partial seizures which apparently are not as bad as IS.  It would be uncommon for her to experience IS again at this point.  Overall it was a positive appointment and for that I am very grateful.

Happy girl

This picture just makes me smile.  Callie loves going on the swings at the playground.

GI Update

It has taken me a week to sit down and write this entry.  I think it is best that I took the extra time because hopefully I will write with a more positive outlook.  A week ago I was not feeling all that positive.

Last Monday we had our first EoE Clinic appointment.  (FYI, I am going to refer to eosinophilic esophagitis as EoE going forward instead of EE.  EoE is now the proper abbreviation per our GI.)  The purpose of the clinic appointment was to get everyone involved in Callie's care together at one time to collectively come up with the best solution to control her EoE.  Last week the group included 8 people: our GI doctor (Dr. Enav), our allergist (Dr.Alpan), his assistant, two dietitians, two nurses, and a med student.  It was a crowd.

First they checked her weight and height.  She was up to 20lbs, 6oz and 30 1/4 inches!!  This was a huge growth spurt and we were thrilled.  They also let us know Callie's latest endoscopy and biopsy results looked great.  She has completely healed!  So we were happy to learn she has both grown and healed.  All the efforts in the last 12 weeks have paid off.  Then they advised due to her allergies we are going to have to introduce solids very slowly and carefully.  Basically the plan is to introduce only 2 - 3 foods every 2 - 3 months.  At the end of these periods Callie will need to have an endoscopy to check for any flare ups.  If there are signs of a reaction, we eliminate the foods and try others.  It is going to be a long, drawn out trial and error process.  After the appointment it began to hit me what a big deal this is.  This EoE is a chronic disease that is seemingly going to majorly impact Callie's life.  Up until recently I did not really think much of it because an inflamed esophagus and some allergies seemed somewhat minor compared to infantile spasms and a brain disorder, but last week it hit me how hard it is going to be to get Callie on a "normal" diet.

I have many concerns.  I feel frustrated that we are going to have to introduce everything so slowly and carefully.  It seems like it is going to take forever for her to work up to the point that she can consume enough calories through food she is not allergic to.  I really do not like how she is going to need a scope every 2 - 3 months which involves anesthesia.  This can not be good for her little body!  And it makes me sad to think about her possibly never being able to enjoy pizza or being able to relax and order anything off a menu at a restaurant, or travel and try new foods.  Who knows if she will ever be able to do these things anyway, but I have to hope.

Because of how long it is going to take to introduce a variety of foods that will eventually make up a somewhat balanced diet, Dr. Enav estimated Callie will need a feeding tube for a minimum of 6 - 12 more months.  He stressed minimum and I took this to mean she is going to need it for 12 months or longer.  He said there is no medical reason why she can not keep the ng-tube for an extended period of time, but it is not practical.  He strongly recommended a g-tube, but left it up to us to decide.  It did not take long to determine she needs to get the g-tube.  I certainly do not want it for her, but the ng-tube continues to be difficult to keep in place and requires her to be closely watched around the clock (including through the night while she is on a slow continuous feed).  It is hard to imagine another year or more of this.  Plus I am hoping she might have better success in feeding therapy if she does not have a tube down her throat.  So I am currently working to schedule the procedure in August.  We first have to meet with a surgeon.  That appointment is now scheduled for July 15th.  

I left last week's appointment feeling somewhat disappointed and overwhelmed by her EoE and what it means for her future, but like everything else we will take it one day/week/month at a time and everything will work out.  Now that we have made the decision to proceed with the g-tube, I am looking forward to getting it and moving on with the implementation of her new diet.  They drew blood for additional allergy testing last week and I am waiting for the results so that we know which food is safe to try first.  Callie will be eating soon!  It might only be applesauce for the next month, but she will be eating.

New ride

Now that Callie is a big girl weighing in at a whopping 20 pounds at 19 months of age, we moved her from her infant carrier to a big girl car seat!  She seems to like it.  Of course she probably will not outgrow this seat until she is in junior high.  :-)

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!