"Baby!"

We just started introducing sign language to Callie at her speech therapy sessions.  During these appointments we introduce signs and sounds to her through play.  This week she surprised us by immediately picking up the sign for "baby".  She was shown a book with pictures of babies and then shown the sign.  She immediately started imitating her therapist and we were amazed!  It was yet another moment that brought me to tears.  Here is our baby signing "baby" for the first time:

Decided and Scheduled!

After a long week of mulling over whether to get Callie the g-tube PEG or button, and to Nissen or not, we have come to a decision!  We are sticking with just a PEG for now.  It feels so good to have this decided.  I did a great deal of research and was able to connect with quite a few moms online to get more opinions.  It was interesting to learn people seem to feel strongly one way or another about the Nissen.  Apparently it is a controversial procedure.  In the end I decided Callie's case does not seem severe enough to warrant the surgery at this time.  If she worsens it is possible to get it in the future.  By choosing just the PEG, we can minimize risks and avoid surgery for the time being.  But I will definitely be swapping it out for a button as soon as we are cleared to do so!  I do not look forward to how the PEG is going to stick out and get in the way.  I pray it does not bother her and she does not play with it.  Hopefully she learns to crawl on all fours soon because I do not think combat crawling is going to be comfortable with the PEG sticking out.  It will be interesting to see how this all works out.

As of today we have everything scheduled.  Callie will be admitted to the hospital on August 31st for the placement of the PEG as well as a follow up endoscopy to check for any inflammation of her esophagus from the food she has tried so far.  It will be a 2 - 3 day stay.  Two weeks following the procedure we will have an appointment with the EoE team to review her case and decide how to move forward with additional foods.  So far she has been cleared to try apples and then bananas.  Apples were a bust.  I think Callie must be the only person who does not like applesauce.  For two weeks she resisted eating pureed apples and apple juice.  We also gave her pieces of apple to put in her mouth, but she mostly just chucked them on the floor.  This week we introduced bananas and I am happy to say she has taken a liking to baby pureed bananas!  Today she finished one stage 2 container of Gerber bananas over 3 sittings.  That is her current record for quantity in a day (since we started solids again this month).  It is wonderful to see her willingly open her mouth and accept food.  There is much celebration at the end of her little meals and she seems happy that we are pleased.  

I feel very much at peace with our g-tube decision and am now counting down the weeks until we can get rid of her ng-tube!  

Little girl with her little backpack

When it is time to eat, Callie's tube hooks up to a bag of formula which is connected to a small pump that fits into a little backpack.  Here is a picture of her all hooked up.  Isn't she looking grown up?

Decisions, Decisions

Well, it was another busy week.  In addition to therapy, Callie had two doctors' appointments.  The first was with Dr. Im, a physiatrist or doctor of physical medicine.  He specializes in pediatric rehabilitation medicine.  My special mom friends all take their little ones to see him and I was told he is excellent at predicting a child's physical abilities.  At our first appointment with him last March he advised Callie has an "excellent long term motor prognosis".  He felt she will be able to walk and perform independent life skills.  He added it is more difficult to know how she will be cognitively, but we might have a better idea after she is two years old.  This past week at our second visit he was again positive about Callie and was very pleased with her recent growth and development.  He studied her movements as she sat and played with a piece of paper and said she looks very good and typical.  There is nothing abnormal about how she used her hands, for instance.  There is no spasticity, stiffness, etc., she is just very delayed.  This is about as good as we can hope for at this time (besides not being delayed!), so I left feeling good.

Our second doctor's appointment was with Dr. Kim, a pediatric surgeon.  I made the appointment to discuss Callie's g-tube placement.  I recently learned there are two types of g-tube placements.  Here is my limited understanding: The first is a PEG tube.  PEGs are placed endoscopically by a GI doctor with just mild sedation.  Pros include less risk because surgery is not required and it is very unlikely that the tube can be pulled out.  The PEG can also be swapped out for a button after about 3 months and again, this does not require surgery.  The major con seems to be the long tube that sticks out of the abdomen.  It gets in a way and I would be concerned about how this would impact Callie's physical abilities, especially since she is combat crawling now.  The second type of g-tube is a button.  Button placement requires a surgeon and general anesthesia.  The main pro is the button is very low profile to the abdomen and very inconspicuous.  When not hooked up for a feeding, the button does not get in the way or get pulled.  Callie would have no problem with her army crawling.  Luckily the surgery is now laparoscopic, but with any surgery there are plenty of risks and this is the major con.  Also, the button can get pulled out when hooked up for a feeding.  If this happens during the first two weeks or so, it will most like require repeat surgery to get it back in place.  I went into the appointment leaning towards the button, but half way through our conversation I felt we should probably stick to the PEG to minimize risks.  Until Dr. Kim brought up the Nissen procedure.

He noticed Callie's impedance test results were abnormal, meaning she experiences reflux even though it is not acid reflux (because of her Prevacid).  He asked me if she spits up often and I said yes.  I explained I have to carefully plan her therapy sessions around feeding times because if she moves much for at least two hours after she eats she spits up.  This is becoming a big problem now that she is anxious to be mobile and is combat crawling around the house.  There are always spit up messes to clean up.  Dr. Kim went on to say Callie seems to be a good candidate for a Nissen procedure.  This is a surgical procedure that takes the upper part of the stomach and wraps it around the lower end of the esophagus.  Stitches hold it in place and the procedure is permanent (meaning they do not go in and reverse it when she gets older).  When the stomach contracts, it closes off the esophagus instead of squeezing stomach acids into it.  Assuming everything goes as planned, a Nissen would cure Callie's reflux and she could stop taking Prevacid.  Dr. Kim further explained he has seen reflux worsen in kids after they get a g-tube because of how it changes the angle of feeding into the stomach.  It is harder to get the Nissen after a child already has a g-tube so they prefer to do it first if at all possible.  Dr. Kim also said if we opt for the Nissen, then that would make our tube decision because Callie would already be in surgery and he would place the button at that time.  So then I started feeling a Nissen would be beneficial to Callie and we would therefore also opt for the button.  That said, I felt very nervous and uncomfortable about all of the surgical risks, especially surrounding the Nissen.  There are lots of organs in that area and he went over the things that could go wrong.  I left the appointment feeling unsure of how to proceed and disappointed because I was hoping to have a decision made and a date scheduled.  Instead I am going to take a little time to research and get a second opinion from at least Callie's GI doctor.  

This is a tough decision.  Please pray we choose what is best for Callie and that all goes well.  

Allergy Update

We finally received an update from the allergist last week.  Callie had blood drawn for further allergy testing at last month's EoE clinic appointment.  The results were misplaced and then with the holiday weekend we did not receive an update until the middle of last week.  She tested NEGATIVE for everything!  Can you believe it?!  I started getting excited and hopeful that perhaps she is not allergic to everything, but the allergist explained why the tests showed conflicting results.

The blood test tested only for IgE-mediated allergies (immediate sensitivity involving allergic antibodies).  The patch test revealed delayed sensitivities which are not associated with the antibodies -- it is a different immune mechanism at work.  The tests can, but do not always overlap in results.  Apparently some people have significant reactions to one and not the other, yet they are still are meaningful in terms of allergies.  Neither test is 100% accurate, as this type of accuracy does not exist in the allergy world.  The test results are used simply as a guide.  

At this point we will stick with the patch test results and assume Callie is just not a very classically allergic child.  We will gradually introduce the foods that came back without a reaction (green beans, carrots, corn, peas, apples and bananas), and then begin with foods that showed some reaction.  

To recap, this what we show Callie has a [delayed] allergy to: soy, wheat, egg, turkey, beef, chicken, oats, pork, potato, and milk.  Even though the blood test (IgE) showed a negative reaction to the following: apple, banana, beef, chicken, cod, corn, egg white, milk, peanut, pork, rice, soy, wheat, green bean, oat, pea, and barley.

It is confusing to get conflicting results (patch positive, IgE negative), but I guess this can happen when testing a different mechanism of allergic response.  Overall I feel a little encouraged to have some negative results and hope this means Callie's allergies are not extreme.  Only time will tell.  We re-introduced apples to her last week as her first solid food since getting her tube at the end of March.  I am happy to report she is doing okay with them.  She is not exactly an eager eater, but she will open her mouth for the spoon and will eat up to a half of container of stage 2 pureed apples.  She seems to have retained her oral motor skills and can move the apples around and swallow properly.  This is very good news.  I look forward to her feeding therapy sessions now that we can finally use solids again.  Hopefully Callie will continue to accept apples and maybe even start to enjoy them over the next two weeks or so.  Owen loves to demonstrate how he loves applesauce, so hopefully she will soon follow suit.

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!