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!

Big Brother Owen

Callie is a very lucky little girl for many reasons.  One of those reasons is she has an amazing big brother.  Callie and Owen are exactly 3 1/2 years apart in age.  Owen has always been a mama's boy, so when Callie was born I did not know what to expect.  Since he was used to getting 100% of my attention for so long, I figured there would be some acting out and jealousy shown towards his little sister.  Perhaps he would request that we return her to the hospital.  But no, not Owen.  He has been a proud, loving big brother from day 1 and to this day has never acted out towards Callie or shown jealousy over the attention she gets.  This would be impressive with a typical sibling, but factor in the attention Callie gets due to her special needs and it is just amazing.  Day in and day out Owen patiently tags along to countless therapies and doctor's appointments.  He also has to deal with me being on the phone adding/canceling/rescheduling appointments, researching/challenging/paying medical bills with providers and the insurance company, spending countless hours working on getting Callie to eat, and crying/stressing when I get down or it all feels like too much to handle.  Despite all of this, he continues to show nothing but love towards Callie (and me).  And Callie in turn adores him, as she should.  He is one special little boy.  A little boy who is quickly growing up... Today is his 5th birthday.

So happy birthday, big brother!  We love you so, so much and you make us so proud!  I hope Callie realizes one day just how lucky she is to have you.  

On the move!

Our baby girl is on the move!  What a great Mother's Day gift!

One Year

One year ago today our world was rocked.  This is how it all went down in case you have not read from the beginning.

I can't help but to feel a little sad today.  I still remember everything so clearly.  :-(

Two weeks of news

This update is way overdue.  So much has been happening and I just have not had time to sit down and write.  :-(

Unscheduled Weight Check (4/19/11):
I stopped by the pediatrician’s office last Tuesday to pick up a prescription.  I could not help but to borrow their scale to check Callie’s weight… 18 pounds, 12 ounces!!!  That is a gain of over 2 ½ pounds in 4 weeks!!!  Wow.  I think it is safe to say the tube feeds of 900 calories per day are working.  Very exciting!

GI Appointment (4/21/11):
Last Thursday was Callie’s first follow up appointment with Dr. Enav since getting her tube.  He was very pleased with her growth.  She also grew a ½ inch in length (28 ½ inches).  However, he was concerned to hear she is no longer taking anything by mouth.  He would like me to offer her a bottle of EleCare at every feed before I put the formula through the tube.  This was our original plan, to get her to take as much from a bottle first before using the tube, but since returning home from the hospital she refuses the bottle every time.  I do not know if this is due to the disgusting taste of EleCare (at least to me) or because she never feels hungry.  We are going to step up the feeding therapy to see if we can improve in this area.
We are also going to make an appointment at the tube clinic to see if the nurses can help find a better way to keep the tube in place on her little face.  The tape keeps rolling back and needs to be replaced daily, but the supply company/insurance does not provide enough tape to make such regular fixes.  And of course the tape cannot just be picked up at Walgreens.  It has to be special ordered and costs up to $4 per piece!  Her cheeks also get irritated from the tape, so maybe the nurses can come up with a better way to affix the tube. (Update: This appointment is now scheduled for May 11^th.)
Dr. Enav advised another appointment that has to be made is a follow up endoscopy at the beginning of June to confirm her esophagus has healed.  This will be a repeat of the procedure we did in the hospital last month where they put her under light anesthesia.  In addition, they will do an impedance pH test at the same time.  This is the procedure I described earlier that involves inserting a catheter through a nostril, down her throat and into her esophagus at the point where most acid reflux occurs.  A sensor on the catheter records the reflux for 24 hours.  We will be able to see if her current dose of Prevacid is taking care of her reflux or if it will need to be adjusted.  We hope that the endoscopy will show her esophagus has healed and the impedance test shows her reflux is under control.  (Update: This appointment is now scheduled on June 8^th.)
The final appointment that came out of this visit with Dr. Enav is our big upcoming appointment with the EE clinic.  This will most likely be our most important meeting in June.  It is my understanding that the EE team is made up of Dr. Enav (GI), Dr. Alpan (allergist), Stacie (dietician), Keisha (GI nurse), and Denise (allergist nurse/assistant?).  We will meet with everyone at once and they will come up with a plan for further treatment of her EE as well as transitioning her from the NG tube to solids taking into account any allergies she may have after her upcoming allergy test.  I am happy to be connected with a GI doctor that specifically specializes in EE (this was just luck – I picked him randomly before knowing Callie had EE, or ever hearing of it for that matter).  Apparently he is quickly becoming one of the top doctors in the country focusing on EE, and the EE clinic that he and Dr. Alpan have set up with everyone participating to treat a patient together at once is unique.
I learned something unfortunate during this GI visit about EE.  Apparently it is a chronic disease.  I did not realize this.  I thought she had an inflamed esophagus, we would let it heal for a few months, and then she would be done with it.  If I understood correctly, it is something she will always have.  Hopefully we will be able to keep it under control, but it will always be there and at risk for flaring up.  It is a relatively new disease and not much is known yet.  Hopefully there will be new information available in the upcoming years as more research is done.  At least for now we seem to be under the best medical care possible in the DC area.

24 Hour Video EEG (4/22/11):
Last Friday we checked into Children’s National Medical Center (CNMC) for a 24 hour video EEG.  Shortly after arriving Callie had many wires pasted to her head.  She did not like this procedure and cried during the 20 minutes it took to hook her up.  Then the wires were attached to a computer that recorded her brain activity and she was placed in front of a video camera.  I was asked to adjust the camera so that it remained on her for the duration of the test.  We had to stay in the room and just moved back and forth from her crib to a little couch.  It was an uneventful stay.  I just had to keep her entertained and prevent the wires from getting pulled.  There were some disappointments during the stay… CNMC does not have wireless internet or free food for parents!  Note to self: Stay at INOVA Fairfax (free room service-style food service and wireless access) instead of CNMC whenever possible!  The biggest challenge of the stay was getting the paste out of her hair after the wires were removed on Saturday.  I washed her hair 4 times before leaving the hospital and it was still a greasy mess.  Luckily it finally came clean after another 6 washes or so at home.  We were released promptly after 24 hours and told the results of the test would be received in a few days.

(Update: I waited until the following Wednesday for the results, but there was no word from our neurologist Dr. Pearl.  I emailed him as well as his nurse for an update.  I waited patiently for another 48 hours until Friday, a full week after the test.  I was hoping and starting to assume no news meant good news, so I was surprised when I got his nurse Meg on the phone Friday morning and she told me the results came back abnormal.  She sent me a copy of the report and it read:

EEG FINDINGS:  There is a posterior dominant rhythm of 7 Hz reactive to eye opening and eye closure.  There is intermittent bitemporal slowing.  The anterior to posterior gradient of amplitude and frequency was maintained.  Sleep architecture was normal, including the presence of synchronous and asynchronous sleep spindles in stage II sleep, as well as vertex waves and K complexes.  There were no interictal epileptiform discharges.  There were no clinical or subclinical seizures.  There were no push-button events.  

Heart rate was 136 per minute.  The QTC interval is not calculated.

IMPRESSION:  This is an abnormal EEG due to the presence of intermittent bitemporal slowing, consistent with the known structural abnormality.  No clinical or subclinical seizures were captured.

I did not know exactly what this meant and was suddenly upset no one had called and explained the results.  I fretted all day and worried I would not have an update before the weekend.  Then Dr. Pearl called and set my mind completely at ease.  He is always wonderful to talk to.  He apologized for taking so long to follow up and advised he was very pleased with the EEG.  He said there were no seizures or signs of infantile spasms.  Yes, there was a little slowing, but nothing compared to what her EEGs showed last year.  He said this abnormality can be expected because of her PMG and he is not concerned about it.  She can remain medication free at this time and instructed me to call immediately if she has any signs of a seizure.  I hung up, said a prayer of thanks, and shed a few tears of relief and joy.) 

Allergy Patch Test (4/25/11):
This day was the start of another busy week (7 scheduled appointments!).  Our second appointment of the day and week was to get an allergy patch test placed on Callie’s back.  They placed small spots of pureed food (19 different types) under a large sticker/patch on Callie’s back.  

We received instructions to leave the patch in place for 48 hours and then remove it and take pictures.  We were then to return to the office 24 hours after that to get the test results read (4/28/11).  I was very disappointed to learn Callie is allergic to most of the foods they tested! 

Most allergic -- egg, wheat, soy

Moderaterly allergic -- chicken, turkey, beef, oats

Slightly allergic -- pork, corn, bananas, peas, potatoes, rice, barley

Not allergic -- milk, green beans, carrots, tomatoes, apples

This makes me very concerned about introducing solids back into her diet, but I am trying not to think about it too much right now.  I have high hopes that the EE team will know what to do and I will wait to find out the big plan in June.

I think that sums up the major events of the last two weeks.  Callie has been her usual happy self and seems to be doing especially well in her therapies (PT/OT) lately.  We are pleased with the progress she is making in her growth and development!

Recent Pics

We have been very busy lately!  Here are recent pictures:

 

 

 Trip to Florida:

First haircut:

Last photos before the tube:

Trip to Puerto Rico:

The tube feeding is going well.  We have a routine now and everything has been going pretty smoothly.  I swear Callie is getting bigger every day!  She is growing right before our eyes.  She feels heavier and her size 3 diapers are finally getting smaller.  We do not have another weight check for a few more weeks but I think I am going to have to sneak in and use the pediatrician's scale in the meantime because I am curious to know what she is gaining.  This coming week we will meet with Dr. Enav, her GI doctor.  I am anxious to hear what he thinks about her growth so far and what he thinks about a plan/timeframe for getting rid of the tube!

Thriving!

Well, I wish I could report that it was smooth sailing after we returned home last Friday night, but it was anything but.  Callie vomited at nearly every feed for the first 24 hours.  I was in a state of panic, thinking with dread that we were headed back to the hospital.  Instead, the GI doc on call gave me instructions for slowing down her pump rate and reducing her feed quantities.  We were both very sick over the weekend and I think that is what contributed to her problems.  By the end of the weekend luckily everything was more under control and I am happy to report things have gone a little better each day since.  

Unfortunately she is now refusing all bottles and taking everything by tube, but I have been able to get her full daily goal amount of 900ccs/30ounces into her for the last five days.  It took a few nights of slow 12 hour feeds, but we made it.  And today I learned it is paying off... She had a weight check and is up to 17 pounds, 11 ounces!!  This is a gain of just over a pound and a half!  This is huge and I am thrilled!

We are going to stay with this EleCare-only diet for another 6 weeks or so until her esophagus heals and we complete her allergy testing.  Hopefully we can then start adding solid foods back into her diet and again start working on her oral feeding skills.  It is my understanding our goal for her weight is around 19 pounds.  Our next weight check with her pediatrician is on May 12th.