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.

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 first stop was Orthotic Solutions where Callie was scheduled to get casted for AFOs.  We recently decided to move forward with the process again since she is getting closer to walking.  She is doing a great job cruising along furniture, but still keeps her legs extended and most of the time goes up on her toes.  The AFOs will stop her toe walking and hopefully help break up her pattern of extension.  Anyway, we made it right on time only to find out they did not have any record of her appointment!  Thankfully the receptionist remembered talking to me and apologized for the mix up.  After a small wait, an orthotist got to work and made her casts.  Callie was not happy with the process, but was thankfully able to be distracted by her iPad and we made it through without too much fussing.  We ended up ordering custom DAFO 3s.  In pink, of course.  They should be ready in about 4 weeks.

We were on our way an hour and a half later, arriving perfectly on time to our next appointment at 10:30.  I scheduled a brief nurse visit at the G tube clinic to have her granulation tissue checked.  The nurse inspected it and told me I am doing a good job with the treatments.  It is getting smaller and will hopefully be gone soon.  She gave me more silver nitrate sticks and we were on our way again.

Our final appointment was right across the parking lot at Children's with Dr. Pearl, her neurologist.  Amazing, but we again arrived right on time at 11:00 (I am always late, so three on time appointments in a day is definitely a record!).  We ended up waiting a while to see him, but the wait is always worth it.  He is so great with Callie and easy to talk to.  He was very happy with her growth and development, and thrilled again that she has not had any seizures.  Our next follow-up will be in 6 months.

We were pretty tired by the time we got home in the afternoon, but happy to have these appointments behind us and glad to have accomplished them in one trip!

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 that might fit her.  I remembered we bought a tiny one for Owen when he was little.  I ran down to our storage room and found it.  We put her on it, but of course she could not keep her feet on the pedals.  I joked about taping her feet to them and then thought of a great idea.  I taped her Crocs to the pedals!  We were then able to slip her feet in and out of the Crocs!  She seemed to enjoy being pushed around the house and this is a great exercise to get her to bend her legs as the pedals go around.  Isn't she looking grown up?! 

Happy Halloween!

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 has another MRI.  I look forward to showing him how well she is doing.  Wouldn't it be amazing if she was walking and talking?  I can't help but to hope...

The last week has been a little rough for Callie.  She developed granulation tissue at her G tube site.  This means a little extra tissue has grown around the tube which can only be removed by burning it off with silver nitrate.  I took her to the GI's office in Fairfax on Monday to have it done and then was given instructions and silver nitrate sticks to continue treating her at home until the tissue is gone.  Hopefully we can get it cleared up and the issue will not re-occur (although apparently it often does).  Then on Tuesday we had a follow up appointment with Dr. Silva, her ENT.  She has had fluid in her ears which we think could be impacting her hearing, and therefore possibly her speech (still limited sounds and no words).  Unfortunately the fluid is still there.  The ENT is giving it 6 more weeks to clear up.  If it is still there in December at our next appointment he will recommend getting tubes.  :-(  Then on Wednesday I had a discussion with one of Callie's night nurses.  Callie has had a few episodes at night over the last month or so where she wakes up and has a hard time catching her breath.  She is terribly upset during these episodes and takes a little while to settle down and go back to sleep.  It has happened four times now.  The nurses got together and discussed the incidents and suspect she might have sleep apnea.  They recommend that I have her evaluated in a sleep study.  So I put a call into her pediatrician to figure out what to do.  The poor little girl can not catch a break.  

With the doctor appointments plus her therapies, she has NINE appointments this week.  We are both ready for the weekend!!

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, to all fours, and then make it a small distance.  She still often goes back down into army crawling, but she is improving each week and I know before long she is going to be quickly getting around everywhere and into everything.  We are amazed at how the Lord is blessing Callie and our family.  I cannot thank you enough for keeping our little girl in your prayers!  

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 getting to know them and learning more about what Callie's future with EoE might be like so that I can better prepare.  

Anyway, on the Feeding Tube Awareness website they have a page designed with information for family and friends.  I found that I could really relate to some of their points and thought it would be helpful to share the page so that others might be able to have a better understanding of what it is like for many parents of tubie kids.  

http://www.feedingtubeawareness.com/Family.html

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 appointment was what type we should order since she is now at this point.  I was surprised when he said he would like to hold off for now.  Instead, he would like to wait to get them once she is walking independently.  I could not help but to get excited about his matter-of-fact way of talking about her walking… it just makes me a little giddy to hear a doctor say ‘when’ she walks, and not ‘if’ she walks like they said at the beginning of this journey.  So I said great, we will wait!  And then I could not resist asking him when he thinks this will happen… when will she walk??  He said if he had to guess he would say 3 to 4 months from now.  I know it is just a guess, but it makes me so, so happy to think about her walking in the upcoming months!  We went on to discuss how she may or may not walk typically… there is a wide range of gaits, but he feels she will be on the typical end of the spectrum.  There could be some awkwardness; only time will tell.  Then I got greedy and asked him about running… does he think she will ever be able to run?  He said, yes, she should be able to run, but she may be awkward and/or uncoordinated.  He said it could be running for play or maybe something like kickball, but most likely not on an athletic team.  I am okay with this.  And of course these are all just guesses… he unfortunately does not have a crystal ball.  But just the thought of her walking around the house and possibly seeing her chase Owen around the backyard is enough to make me giddy with excitement!

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 keep the PEG nice and secure under the velcro strips of her diaper so that it does not pull at the site and Callie leaves it alone.  She does not even seem to notice it.  She had a little discomfort the first day or so home, but quickly went without any pain medication and has been healing nicely.  I was concerned about her army crawling and that apparently bothers her because she does not do it anymore, but she kind of scoots on her side.  The good news is she is now getting up on her hands and knees in the crawling position!  She is not going anywhere yet, but she rocks and I am hoping it is only a matter of time before she figures it out.  

Callie has nine, yes nine, appointments this week.  I am pretty sure this is a new record.  At the first one yesterday we met with her EoE team (GI, allergist, dietitian, etc.).  They officially told us her last scope looked clear and the biopsies taken from her esophagus were normal.  So this means apples and bananas are officially safe foods.  We were given the green light to try sweet potatoes for the next 4 weeks and then we will move on to try carrots.  We are also going to cut one Elecare formula feed from her daytime routine and add the volume to her nightime feed instead.  This plan will allow her to keep her 900 calories/day Elecare diet while hopefully increasing her appetite during the daytime so that she will want to eat more solids.  Callie will be scoped again in 3 months and at that time the PEG will be swapped out for a button G tube.  I am looking forward to that change.  

Another appointment to mention was this morning's meeting with a pediatric ENT.  It was our first time seeing Dr. Silva and I really liked him.  To back up for a minute, Callie has a significant speech delay.  She has a variety of sounds, but really only the "B" consonant sound is clear and she does not have any words yet.  On the day she was diagnosed with PMG we were told she may never speak, so we are just waiting to see what happens.  In the meantime she goes to speech therapy and is learning how to communicate non-verbally (signs and in the future, possibly through technology like an iPad).  Her speech therapist recommended that we have her hearing checked just to make sure she does not have an issue in that area that may be contributing to her delay.  About a month ago she had a hearing test and we were alarmed when she did not pass with flying colors.  They advised the borderline results could be due to fluid in her ears.  She has had two ear infections this year and the fluid could be left over.  So this is how we ended up at an ENT today.  Dr. Silva confirmed she does indeed have some fluid in both ears which could explain the hearing test results.  He advised he would like to give it a little longer to resolve on its own before taking any steps (like tubes).  In the meantime he recommended having a different type of hearing test conducted in his office.  We went ahead and did that today and she passed in both ears!  This was great news and supposedly we can now feel fairly certain she has no hearing issues.  We will go back in six weeks to check the status of the fluid.

Four appointments down so far this week and only five to go!

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 my G tube care training and a case worker stopped by to make sure I felt comfortable with everything.  Dr. Enav (GI) gave his blessing to release Callie and they started preparing her paperwork.  Then we sat in the room and waited.  

The nurse stopped by to apologize for the delay... apparently a few people were admitted and it was taking a while to process Callie's release.  Another hour passed and I noticed Callie starting to act clingy.  And then her cheeks looked flushed and she seemed warm.  I walked out to the nurse's station and asked them to take a look at her.  Sure enough, she had a fever!  She was up to 100.9.  I could not believe it.  So they called Dr. Enav and were trying to figure out what to do.  They monitored her for a little while and she went up to 101.3.  Finally they advised we needed to stay.  They gave her Tylenol, took a chest x-ray and then a blood draw.  By this time it was late last night and Callie was exhausted.  She fell asleep and thankfully slept through the night.  The hospital was actually quiet and they left her alone except for her 1:30 feed, so I was even able to get some decent sleep.

This morning Callie woke up fever free and in pretty good spirits.  The resident advised her chest x-ray looked good but her blood work came back elevated.  It could indicate an infection or it could be elevated from the stress of the procedure.  They were not really sure what to do about a random fever with no other clear symptoms.  Dr. Enav stopped by and said the site looked good.  It was oozing a little, but he said this is normal.  I am just supposed to keep it clean and dry, and make an appointment to have her checked by her pediatrician this weekend.  They decided to monitor her until the afternoon and said if the fever did not come back, if she continued to tolerate her feeds, and if there were no other symptoms, we could go home.  Thankfully everything is falling into place and we are just about on our way out! Hopefully I do not jinx us by posting this while we are waiting for our paperwork again, but I feel pretty sure we are going to make it out the door this time.

We did have a nice surprise yesterday.  I recently told you about Callie's wonderful night nurses.  Well, they stopped by to visit her!  They spoiled her with balloons and a teddy bear and gave her lots of attention.  She was very happy to see them and the visit definitely brightened our day.

Now we are happy to go home and get settled.  Thanks for thinking about us and following Callie's progress.  xx

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.  The endoscopy results came back normal which was great news.  That means her EoE did not flare up as a result of her eating pureed apples and bananas over the last 8 weeks.  So we have two safe foods so far.  We have an appointment with the EoE team on September 12th and will be told how to proceed with her diet at that time.  

Callie was very uncomfortable from the PEG when she woke up in the recovery room.  She was crying inconsolably for over 30 minutes before they gave her morphine.  She then rested more comfortably in my arms, but was out of it for a while.  She did not want to be let go the entire afternoon and evening.  Luckily she was so exhausted by night that I was able to get her to lay in her crib.  Despite the child that screamed for hours in the room next to ours, frequent beeping of her IV, med, and feeding pumps, lots of nurse traffic, and a tube leak in the middle of the night, she slept pretty soundly.  I did not, but was not expecting differently.

Her first formula feeds through the PEG will be at 10:00 and then 2:00 today.  If Callie tolerates both of those feeds we may be released later this afternoon!  I am trying not go get my hopes up, but that would be so great.  Otherwise we will be here until tomorrow.  

Oh, I should also mention that Callie had a visitor yesterday shortly after we settled into our room.  Miss Virginia stopped by.  Callie was somewhat out of it at the time, but stared at her sparkly crown.  Afterward a Google search revealed this was not THE Miss Virginia 2011, but apparently still some sort of Miss Virginia.  It was still nice to have a visitor with a sparkly crown.  :-)

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 Callie's special needs.  I did not look forward to going out in public with the tube because I did not want people staring and asking questions.  Up until this point people always just stopped to say how cute Callie was, etc.  We could not go to the grocery store without someone saying something nice.  These compliments helped ease the pain of our reality.  Now suddenly it was very obvious we had a problem.  Just one week after being home from the hospital we hopped on a plane to Puerto Rico and were very public for a week.  At first I was very aware of the second glances, especially as we spent time in airports, but then I noticed people were not looking in a bad way.  Instead they were mostly concerned and curious.  Several people asked if the tube was for oxygen.  With the exception of one person on a bus in PR who starred and then abruptly asked "What is wrong with her?", everyone was polite and caring.  Within a couple of weeks I did not even think twice about it when going out and could care less what anyone thought.

I am not sure if I mentioned this before, but there is a reason I am not a nurse.  I am not good with medical "stuff" and easily get queasy.  I am the last person who I thought would be able to do something like drop a NG tube into a little nose, down a throat and into a tummy, and then calmly check for proper placement.  But I keep learning on this special mom journey that you quickly adjust and surprise yourself at just what you can do when it comes to caring for your special child.  Soon I will be learning how to change out a G tube.  Today that makes my stomach turn and yet soon I will become an expert.  Crazy.

A huge thing I learned is how difficult it is to keep a NG tube in place on a 1 1/2 year old.  Going into this I was not warned and obviously did not do enough research to figure this out.  I would like to share this to hopefully help someone else.  Callie thankfully is mellow and has never seemed annoyed enough with the tube to intentionally try to get it off her little face.  Instead, it comes off when her fingers catch it while she does something like rub her eyes when she is sleepy or rub her nose when she has a cold or an itch.  You can be holding her and watching her like a hawk and it can still come out right before your eyes in an instant.  The worst situation is when she has a cold and her nose runs, which gets under the tape.  It is nearly impossible to keep the tape in place when this happens and the tube can (and does) come out very easily.  The tape also gets loose during baths or going to the pool.  It is a real pain.  This is a huge problem when it comes to her sleeping.  I quickly learned while we were in the hospital that you have to watch her during the night especially when she is feeding.  If the tube comes part of the way out during a feed, formula could get pumped into her lungs and cause major issues.  Just before we were released from our longer-than-planned hospital stay in April, a kind case worker informed me that Callie was eligible for nursing care through Medicaid.  She explained a nurse could come and stay with her at night to make sure she is safe during her feeds which would allow me to sleep and better care for her during the day.  After 9 days in the hospital with no sleep from watching her at night, I accepted the offer and unbelievably we had a nurse come over to the house just hours later that very same night.  I quickly learned this care was a huge blessing.  Five months later I am still feeling blessed and am happy to report that we have two good nurses who have been taking excellent care of Callie this whole time.  Miss "Y" looks after her during the weeknights and Miss "Z" comes over on the weekends.  They have grown to genuinely care about Callie and she in turns adores them.  They spoil her rotten when putting her to bed and I am not sure what I am going to do when they are no longer here!  I wanted to make sure to share this in case it helps someone else learn their child is eligible for nursing care.  If so, I hope you are able to get wonderful, caring nurses like Callie's.  

And now our time with this type of feeding tube is coming to an end.  On Wednesday we will check into the hospital for an endoscopy (to check for any EoE flare ups) and PEG tube placement.  We anticipate a 2 - 3 day hospital stay.  I am dreading the whole G tube thing and yet very much looking forward to just getting it and moving on.  I am focusing on how much tube feeding is helping her grow and develop.  The progress she has made since March has been incredible and we look forward to seeing her continue to thrive!  Thank you for your continued thoughts and prayers!

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 and laughs, and then signs "more"!  At therapy Callie was recently introduced to their trapeze and she LOVES it.  Her therapist holds her hands on the bar, swings her out over a big pillow and then lets her drop.  Callie originally did this as part of an OT session.  Now she begs her PT and ST for the same activity since we work in the same gym right next to the trapeze for all of her sessions.  The other day during speech therapy she kept eyeing the bar, made her way across the mat to it, and signed "up".  There was no way to resist her clear request!