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 it was full of blessings.  It is hard to believe one year ago our little Callie at 13 months of age was about 15 1/2 pounds and not able to sit independently.  Today at just over 2 years old she is about 24 pounds and working very hard to walk!  She just learned to take steps with her new baby doll stroller and with any luck will soon be making her way around on her own!  And she did not have any seizures this whole year!  PRAISE GOD!!

I have been somewhat obsessed with getting her walking over the last several months and have been focusing primarily on her PT.  This year my focus will be on her speech and feeding.  These are now the areas where she is lagging the most.  And I should point out that this is exactly what Dr. Dobyns predicted when we went to Seattle last year!  Callie is trying to say a few words like "up", "ball", and "baby", but they are very approximate at this time and her speech sounds are still pretty much limited to "ba" (no "da", "la", "ma", etc. except for something that sounds like "a-up-a" for "up").  When it comes to eating, she will accept food into her mouth like taking a bite of banana, but once it is in there she does not know what to do with it.  She has not figured out chewing yet.  So we are sticking mostly to purees and she for the most part could care less about eating.  If we just tube fed her all day, she would be happy.  Please pray we can make great progress in these areas this coming year.

I have been writing about caring for Callie for nearly a year now and it has been therapeutic for me to share this journey.  I am typically a private person and it took me a while to feel comfortable sharing, but I am so glad I did.  I cannot thank you enough for following Callie's progress and for your support & prayers.  Each comment left and email received has meant so much to me.  I love how it has connected me with other PMG moms from across the country and around the world!  It has been a real blessing.  Thank you all so much.

Callie & I wish you the very best in this new year!  xoxo

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 Clinic

We 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, sweet potatoes and carrots are officially considered safe foods.  So far so good!  I was nervous, but took a deep breath and shared what was discussed with Dr. Woods.  They took it pretty well and I imagine they were not surprised at his opinion because they no doubt work with other families who have met with him.  I received the impression that they think he is a very highly respected allergist, but feel EoE is not necessarily his specialty like they consider it theirs.  That said, they advised they will go along with whatever approach I decide to take.  We had a lengthy conversation about what is best for Callie and decided on a hybrid approach.  We are going to be more aggressive, but not so much so that we will introduce everything at this time.  We are going to give her all fruits and vegetables (one at a time about every 5 days) and then scope in 4 - 6 months.  Hopefully the scope will be clear and then we will figure out how to proceed into the meat and grain categories.  I feel satisfied with this plan.  We are still being somewhat cautious, but speeding up the process and delaying the next scope.  In the meantime I have finally been doing more EoE research and discovered the Children's Hospital of Philadelphia (CHOP) has a special center for pediatric eosinophilic disorders.  It is considered one of the top 4 EoE specialty centers in the country.  I have been in contact with them this week and am working on getting Callie seen for one final expert opinion.  It sounds like it will be a very comprehensive evaluation over a 3 day period and I am looking forward to hearing what they have to say.  I guess I am a collector of opinions.  I feel like we are able to make the best decisions for Callie after seeing a variety of experts.  I finally felt satisfied last year after seeing four neurologists about her PMG.  I think I will feel satisfied this year after seeing three GI/allergists about her EoE.  Fingers crossed.

AFOs

Callie has continued to be patient with her AFOs, but her heels keep popping up in them.  She is a toe walker and although the DAFO 3s are specifically made to stop this pattern and keep the heels down, she is a little Houdini and manages to get her heels up off the bottoms of the braces.  At the request of her PTs, I took Callie back to Orthotic Solutions to see what could be done to tweak the fit to keep her feet correctly positioned.  We were there for two hours while the orthotist worked on modifying them.  He tried adding a variety of different pads and drilled holes to modify how the straps keep her feet in place, but in the end was unsuccessful.  He said he would keep them and consult with the company that created them.  The next day the office called and advised we need to start over from scratch.  So we are going back next week to get casted again.  <sigh>

ENT Issues

Callie has now been congested for nearly two months.  It is like she has a never ending cold.  It is to the point where she snores loudly at night and has a constant runny nose (thank goodness we do not have the NG tube anymore!).  After going to the pediatrician a few times in November, they prescribed Amoxicillin even though they could not find any infections.  She took it for 10 days, but we did not see a change in her symptoms.  About two days later we went to the ENT for a checkup, and like I mentioned earlier he discovered she had a double ear infection.  He prescribed a stronger antibiotic called Cefdinir for 14 days.  We just finished it on Monday night.  Tuesday she woke up from her nap with a fever of 103!  I took her back to the pediatrician this morning and they are not sure what is going on and how she can have an infection after two rounds of antibiotics.  Her left ear looks good now, but the right ear is red.  Both still have fluid.  They prescribed a third antibiotic called Azithromycin.  I expressed my concern over so many antibiotics, so they said I can wait 48 hours before giving it to her to see if the fever fades by itself (indicating a virus).  We will see what happens.  In the meantime I placed a call in to Dr. Silva (ENT) to get his opinion, but he was in surgery today so I will have to wait to hear back from him tomorrow.  I just feel so bad she has had to deal with these symptoms for so long and now a fever.  But despite all that is going on she continues to be happy and nearly always smiles, especially for her big brother.  

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 did not get much out of the appointment other than peace of mind that Callie was being treated properly.  I figured it was worth the trip again even if we just found out we are doing everything “right”.  I was surprised to find out he had a completely different opinion! 

First of all, I was instantly impressed with Dr. Wood.  He came in and greeted us before his assistant doctor, Dr. Neuman, came in and went through Callie’s whole history with me.  Then Dr. Neuman excused herself to discuss Callie’s case with Dr. Wood.  While we waited, Callie had fun playing with another little Callie. :-)

 

 

Then both doctors came back in to answer my questions and Dr. Wood gave his opinion.  We started by discussing her patch test results which showed she is allergic to nearly everything.  Dr. Wood simply said patch tests are not accurate and he does not put any stock in their results.  He does not even use this type of testing on his patients anymore.  I thought that was interesting.  Then I shared how I felt that the process of testing 2 to 3 foods every 2 to 3 months and then scoping seems painfully slow and I am not happy with how she is put under for the scopes so often.  It cannot be good for her!  Is there any other way??  To my surprise he said he felt like this current treatment plan was “ridiculous”.  He went on to say he would take a much more aggressive approach.  He said if Callie were under his care he would have her eat everything except the top 5 known allergens which are milk, soy, eggs, wheat and peanuts.  He would have her eat everything for a few months (introducing a new food every 4 to 5 days) and then scope her.  If we are fortunate, the scope will be clear and we will have narrowed her allergies down to one or more of these 5 foods.  I can’t tell you how happy I was to hear about this possibility!  Imagine eliminating a year (or years?) of scopes!  There is no telling if it will work, but the more I think about it the more I think the potential reward outweighs the risk.  The worst thing that can happen is she has a reaction (her EoE flares up and her esophagus gets inflamed again) and we have to wait two months or so to let it clear and go back to just apples, bananas, sweet potatoes and carrots, which is where we are today.  We would waste about 5 months (3 months of introducing foods, and then 2 months of healing).  But at best we could eliminate years of introducing just one food per month and then scoping every 3 months.  In just 3 months from now we could possibly increase her diet from just 4 foods to nearly every food except 5!  Dr. Wood also said it is possible that she is just allergic to milk, since that is primarily what her diet was made up of when she was diagnosed with EoE.  Imagine that!  This gives me so much hope.  I am trying not to get to too excited, but I can’t help but to feel hopeful.  The thought of knowing if her allergies are extensive or not in just 3 months from now is so great.

He went on to recommend that we consider reducing her Elecare formula intake by around 15% during the day to hopefully stimulate her appetite and willingness to eat.  Hopefully when we get her ENT issues resolved in the next month that might also help.  Now that she is bigger and on the growth charts she can afford to give up some calories from the formula.  We should be able to make up the difference with food, especially if she is allowed a wide variety.  Of course we still have the huge hurdle of her not being capable of chewing and eating more solid foods yet.  She is still on purees and mashed food.   So even if she is allowed to eat everything, we have to figure out how to get it into her.

I left the appointment feeling hopeful and after thinking about it for the last day, I feel like we should follow Dr. Wood's advice.  At the very least we can move in the direction of his opinion by introducing 10 or 15 new foods instead of just 3.  Unfortunately this now puts us in the position of being caught between two doctors.  Next Monday I will be meeting with Callie's EoE team (allergist, GI, dietitian, etc.).  I will need to explain Dr. Wood's opinion and try to get them on board.  If they are not agreeable to the plan and we want to follow it anyway, we might have to find a new GI who will work with Dr. Wood.  He already said he will accept Callie as a patient if things do not work out with our current team.  I am a non-confrontational person, so I am already dreading this appointment on Monday.  Please pray that we are making the right decision for our little girl!

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 for over a month now.  Despite just finishing 10 days of antibiotics that a pediatrician prescribed to her for the ongoing cold symptoms and chronic congestion, Dr. Silva advised not only was the fluid still there, but she also now had double ear infections!  This poor girl can not catch a break.  He prescribed her a stronger antibiotic, this time for 14 days.  We are to return to see him in one month and at that time he is going to perform a nasal endoscopy... a scope up her nose.  :-(  He is going to check the size of her adenoids.  He will then most likely suggest that we get her ear tubes and possibly her adenoids removed.  Despite not liking any of this news, I still feel good about seeing Dr. Silva.  There is something about him that makes me trust his judgement and he seems very knowledgeable and good with Callie.  He also has come very highly recommended by several people, so I am trusting his advice.

On Thursday we went to the Pediatric Sleep Center in Purcellville.  As I previously mentioned in October, Callie has had some incidents at night where she wakes up gasping for breath.  Her night nurses suspect sleep apnea and suggested having her complete a sleep study.  We went to the sleep center for a consultation last week and after the evaluation the doctor felt sleep apnea is definitely a concern for her and she should be tested.  So we will be returning to the center for a slumber party next month.  They will wire her up and monitor her for one night to determine if she has a sleep disorder.  I am not looking forward to this, but it will give us beneficial information.  The doctor advised they will be able to make a recommendation to the ENT whether her adenoids and possibly tonsils should be removed, so it will be good to have this information around the same time we are deciding what action to take with Dr. Silva concerning tubes, adenoids, etc.  

Despite all of these appointments, ear infections and cold symptoms that will not go away, Callie has been in good spirits.  In the last week she has made small gains with her feeding by now eating mashed sweet potatoes (more texture than her normal purees).  She has also been very patient when it comes to putting on her AFOs and actually seems to enjoy walking around for them for about an hour at a time.  She also impressed her OT last week by threading beads on a string, which is supposedly about a 2 year milestone... one she is hitting right on time!  And finally I am happy to report she is really making her way around the house crawling these days.  Although she has been crawling on her hands and knees for two months now, she has really only started using her skill to get places around the house.  Before she would just crawl a little in one room, usually only far enough to pull up on a piece of furniture and cruise around (she typically prefers to be up on her feet).  But this afternoon I was cleaning the house and she happily followed me all around.  It made me smile the whole time.  I am just so happy and grateful she is making such great progress and try to not let a day pass where I take these skills she has worked so hard to accomplish for granted.  I am so proud of our little girl!

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 here she is in speech therapy last week:

Callie is blessed to have such wonderful therapists!!

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 a couple hours today shopping for shoes that would fit them with no luck.  She wears about a 5 1/2 W toddler shoe.  They need to be about a 6 1/2 XXXXXXW to accommodate these things.  Hopefully we can make due to a 6 1/2 XW or XXW if I can find one.  A wonderful man at the Stride Rite outlet tried just about every shoe in the store on her tonight without any luck.  I am hoping I will be able to order a pair online.

Our next stop last Friday was Fairfax Hospital.  Callie was scheduled for another endoscopy (to check for EoE flare ups) and then a G tube swap.  They replaced her PEG tube with a MIC-KEY button.  It is much more compact and I like how the tube does not extend from her tummy any more.  I wanted to go straight to the super low profile Mini One button, but the hospital does not stock them, so we will change to this type in 3 months (the button will be changed every 3 months going forward, which I will learn to do at home).  While it was hard seeing Callie put under yet again, for the first time I did not cry so I guess I am getting used to this routine.  The scope looked clear indicating we are safe with the foods that have been introduced so far (apples, bananas, sweet potatoes, and carrots).  Biopsies were taken to confirm the results.  We will meet with the EoE team next week to discuss her case and next foods to try.

After the hospital procedure we headed to the G tube clinic for training from the GI's nurse.  After I was shown how the button & extension tubing works and should be cared for, we were sent home.  Callie & I were both exhausted and took much needed naps.

Callie's belly seems tender and she is defensive when I lift her shirt to hook up her feeds.  She fussed a little before every meal this weekend, which is not like her.  Hopefully the discomfort will pass soon.  She continues to be a brave little girl who endures so much.  I wish I could take all the pain on myself so she would not have to deal with any of this.  I will wish that for the rest of my life.