Special Thanks

As I mentioned in the last entry, county early intervention therapists have treated Callie in our home for the last two years.  She received weekly PT, OT, and speech therapy.  We were fortunate to have excellent therapists who put their hearts into helping Callie.  I think it is worth repeating that they truly cared about her, worked very hard during her sessions, and got genuinely excited as she progressed.  This week was bittersweet as we said good-bye to them after our last sessions before she transitions to the county special education preschool next week.  I will always be grateful to these ladies who were some of the first to help Callie after she was diagnosed in 2010.  They were also like therapists to me as I shed tears during the early days when my heart was broken and more recently helped & supported me through our challenging IEP process.  I will miss our conversations and the personal touch of having individuals work with Callie in our home.  Alana, Marcela, Johanna and Sharon, thank you for everything you have done to help our special baby girl.

First IEP :(

Things have been busy, busy, busy!  As usual I wish I had more time to sit down and write because there is so much I could share.  One of the biggest things going on lately is negotiating Callie's first IEP.  The story starts with an explanation of our county's early intervention services.  When Callie was diagnosed at 5 1/2 months she became eligible for the Infant & Toddler Connection of Virigina.  This program arranged for therapists to come into our home to work with Callie.  Over the last two years we have had PT, OT and speech therapy at home.  We have been fortunate to have excellent therapists who put their hearts into helping our little girl.  They truly care about her, work very hard during her sessions, and get genuinely excited as she progresses.  Children age out of this program when they turn 3, so Callie's time with her home therapists will be coming to an end soon.  The next step is transitioning into the county's special education preschool.  They have classrooms in various elementary schools across the county where children with special needs can attend for a couple of years until they are ready for kindergarten.  Callie's transition from ITC to preschool began this past March when we met and they deemed her eligible for the program.  Once eligibility is determined, the Individualized Education Plan (IEP) process begins.  And what a process it was!

An IEP is a legally binding document that describes the educational program that has been designed to meet a child's unique needs.  Each child who receives special education and related services must have their own IEP.  It creates an opportuniatey for teachers, parents, and school administrators to work together to improve educational results for children with disabilities.  Our first IEP journey started out very rocky.  I immediately knew there was a problem when I received a call from a teacher from a distant elementary school to set up our first meeting.  I already knew there was an appropriate classroom for Callie in our home school where Owen attends so I was not happy to learn Callie had been assigned to a school much farther away.  Then I learned the type of classroom at the other school was considered a "multiple disability" (MD) class.  Typically the children in these classrooms have more severe disablities than Callie and I was concerned that she would not be challenged by her peers if placed in this type of room.  That was the first issue.  The second issue was that we were supposed to receive a copy of her IEP by mail prior to the first meeting.  It never arrived. Less than 24 hours before the meeting the teacher finally scanned and emailed me a copy.  When I looked over it I was really upset.  Our address was incorrect so apparently it was delivered to someone else (privacy issue!).  Next, it was extremely sloppy.  There were many typos and at one point it referred to Callie as Joshua!  The goals were also very weak.  For instance, her long term one year gross motor goal was to walk just 30 feet.  She can already do this!  Lastly, the service/therapy minutes they provided were laughable.  Just 20 minutes of PT per week and 30 minutes of OT and speech.  Crazy.  Everyone else I had talked to had their kids receiving 60 minutes of each type of therapy.  I ended up taking Callie to our first meeting because I wanted them to see her for themselves.  In the end this was a good move because they quickly came around and agreed with me that she should not be placed in a MD class.  That was the first battle.  Next were the goals.  Over the course of our three meetings they were improved, but I still find them somewhat weak and unsatisfactory.  In the end I decided I would table my concerns for now and call another meeting in the fall once the school therapists get to know her.  Hopefully we can then work together to come up with better goals.  Finally, the service minutes remained.  I expressed my displeasure in the piddly minutes being offered and explained we have a very effective plan in place right now with 60 minutes of weekly PT and speech.  We simply wanted to maintain the services we currently receive through the county.  They came up to 45 minutes for PT and speech, but would not go higher.  I ended up contacting a supervisor of special education for our county and explained the situation.  She ended up attending our last IEP meeting and I had high hopes that she would agree with our logical case that Callie needed 60 minutes of therapy.  But no such luck.  The whole team stubbornly held at 45 minutes.  For an hour and a half we went around in circles.  I argued that they had never met or worked with Callie (the parties at this meeting were different than the first who met her) and yet seemed so sure that she only needs 45 minutes of direct service.  All contributing parties to the IEP who know and have worked with Callie strongly feel she needs 60.  I even had a letter from her neurologist stating 60 was appropriate for her.  They would not budge from the arbitrary number they had chosen.  It was extremely upsetting and I finally broke down into tears of frustration.  Long story short(er), we compromised at 60 minutes for speech, but only 45 minutes for PT.  And she was only given 30 minutes of OT.  I still feel that this is not appropriate for Callie since her delays are so significant, but I was fearful if we delayed her IEP by going through a mediation process she may not be placed in our home school (the class might be filled by the time her IEP was settled).  We did not want to risk this and therefore ended up signing even though we were far from satisfied with the final document.   

This was a learning year.  I tried my best by speaking with special mom friends, consulting with two advocates, and reading what I could to educate myself, but it was a really difficult experience.  I will continue to do what I can to learn to be a better advocate for Callie and hopefully will be an expert at this before long, but for now I feel somewhat defeated.  At least she is in the correct school and in the correct type of classroom, so the battle was not lost.  It was more like a draw.  I am determined to make next year a win.

Callie loves her new Hello Kitty backpack and is ready for school!

Sunday School

We attend church on Sundays.  There is a "cry room" that allows parents to sit with their infants and not worry if they make noises during the service because the room sits at the back of the sanctuary and is enclosed in glass.  When Owen was born we sat in that room for a year before I felt comfortable leaving him in the nursery.  He has been involved in the kids program ever since and enjoys attending Sunday school.  Things have been different with Callie.  I never felt comfortable leaving her.  For the first year we kept her in the cry room with us.  At that point she still was not sitting up independently and I just was not in a place where I felt comfortable explaining her delays to the nursery staff.  Then she got her NG tube and I certainly did not want to hand her over to anyone and risk it getting pulled.  Then she was a toddler, but not toddling.  One Sunday I took her to the nursery to see if I felt comfortable leaving her, but she was so much bigger than all of the babies, and it was kind of depressing how the other much younger babies would crawl up to her as she sat there immobile.  She looked big and out of place there.  But when I tried out the toddler room it was just as depressing because all of the kids were walking around and talking.  Quite a bit of time had passed since these trials and for some reason yesterday I decided to give Sunday school another try.  She is pretty steady on her feet now, so after observing the toddler room I decided to try dropping her off there for the service.  I asked her if she wanted to play and she looked at me with her expressive brown eyes and nodded her head "yes".  I quickly explained to the nice lady volunteering in the room that she is delayed and therefore cannot talk, and also FYI she has a feeding tube in case anyone noticed a bump on her tummy (her button) while holding her.  Then I took a deep breath and handed her over.  Like a big, brave girl Callie walked right into the room and headed for the toys.  I slipped away and my eyes welled with tears as I headed to the service to meet Allen.  It was a hard leaving our little girl!  

Each child is assigned a number and if there are any issues the number will appear on a screen in church so that you know to go check on your child.  Callie's number popped up about halfway through the service and my heart sank.  All of a sudden I doubted my decision to leave her and rushed to the toddler room.  The lady advised she was absolutely fine and doing great, but it was snack time and they were wondering if she could have a graham cracker since I mentioned a feeding tube.  Duh... I didn't even think of snack time.  I explained if they broke the cracker into smaller pieces and made sure she did not put too much in at a time it was fine.  Then I camped outside the room for a little bit to observe her and make sure everything went okay.  Again tears came to my eyes.  I was overwhelmed with emotion as I watched our special little girl completely blend in with the typical kids.  She sat there with the others and happily fed herself a snack and then went back to playing.  Two summers ago after her diagnosis I was afraid to hope for something like this and now I was witnessing it.  Seeing Callie yesterday in that classroom is proof enough for me that God answers prayers.  I am so humbled and grateful for how our baby girl has been blessed.  To all of you who faithfully pray for Callie, thank you from the bottom of our hearts.

Happy 4th of July!

CHOP - Third & Final EoE Opinion

Last December we went to see Dr. Wood at Johns Hopkins for a second opinion of how Callie's EoE was being treated.  If you remember he encouraged me to feed her everything but the top 5 allergens which was a much more aggressive approach than what our GI/Allergist team in Fairfax was recommending (at that time we were introducing one food per month and scoping every 3).  After following up with our home team, we decided on a hybrid approach and sped up the introduction of all fruits and vegetables, but waited on everything else.  Around that time I discovered the Children's Hospital of Philadelphia (CHOP) has a special center for pediatric eosinophilic disorders.  They are considered one of the top 4 EoE specialty centers in the country.  I started the process to have Callie seen there for yet another opinion since Hopkins and Fairfax recommended such different approaches. After 6 months of waiting Callie's appointment was last week!  So my little girl and I took another road trip, this time to Philadelphia.

Callie was seen by Dr. Chris Alexander Liacouras (GI), Dr. Jonathan Spergel (Allergist), and Michele Shuker (Dietician/Clinic Coordinator).  We met with Dr. Liacouras first. I reviewed Callie's history and explained when her EoE was first discovered the hospital told me it was caused by either acid reflux or food allergies.  So they put her on Prevacid and eliminated all food from her diet (replaced by 100% elemental formula Elecare).  Sure enough that cleared everything up and we have been slowly introducing food ever since while regularly scoping to make sure she is not having any reactions.  I then asked if CHOP would have handled her case any differently.  He said yes!  He went on to explain they would have only put her on Prevacid at the beginning because how do we know if reflux is the problem or food allergies??  I just looked at him and said good question.  <sigh>  He said there is a chance she only has reflux.  And if this is the case her diagnosis is technically considered PPI-responsive esophageal eosinophilia (PPIRee)*, not EoE!!  Crazy.  So the bottom line in his opinion was to give her everything (no diet restrictions) and then scope in 2 - 3 months to check for a reaction.  There is a chance we will get lucky and have a clear scope meaning she does not have any food allergies.  That would be incredible.

Next we saw Dr. Spergel.  He agreed with Dr. Liacouras and also recommended that we do not restrict her diet.  At that point I had had a little more time to think this through and asked what he thought about holding out on dairy at first because milk was a large part of her diet right before she was diagnosed.  It would not be a surprise to me to find out she has a milk allergy.  He agreed it would be fine to give her everything except dairy at this time.  So in 2 - 3 months we will scope and if it is clear, we will then add dairy and scope again in 2 - 3 months.  If that scope is clear, we are food allergy free!  Worst case scenario is the first scope is not clear and we have to back up to where we are today and take it slower.  Or we find out at the second scope that she has a milk allergy.  But best case scenario would be learning she has only reflux.  Amazingly Dr. Spergel said they un-diagnose about 1 of 3 kids who see them for a second opinion!  Wow.  

Our last appointment was with Michele Shuker.  Now that we decided on a diet plan, we had to discuss how to get the foods into Callie.  Unfortunately due to her neurological condition (PMG), she has oral motor problems and can not chew food effectively therefore many items are a choking hazard.  So even though she is now allowed to eat almost anything, she is physically not able to.  We first decided to move all of her formula tube feeds to the night and cut another 100 - 150 calories to hopefully make her hungrier during the day.  This means her new schedule is a slow continuous tube feed from 10pm to 8am.  Then she will eat solid food for breakfast, lunch, dinner and snacks.  I am trying to make everything into consistencies she can handle and am currently trying to get her to eat as much as possible orally.  If we are not able to get enough into her (we need to get a good quantity & variety for an accurate scope as well as make up her missing formula calories), I am going to start supplementing with a blenderized diet. A blenderized diet is regular food blended to a consistency that can be easily passed through a feeding tube.  Of course this requires purchasing a $500 blender.  Yikes.  

Callie has already been enjoying a wider variety of foods over the last few days.  Allen & Owen made homemade Chinese dumplings the other night and she enjoyed eating the centers with us at the dinner table.  I look forward to being able to feed her off my plate at restaurants.  This is an exciting time!  I feel comfortable taking this big step now that both Hopkins & CHOP feel it is the best way to proceed.  I am trying not to get my hopes up too much, but it would be amazing to find out she does not have severe food allergies after thinking the worst last year when she was diagnosed.  We will know in 3 - 6 months!

This is the only picture I took in Philadelphia.  Not a great one, but here is our Callie girl on the way out of CHOP.  Headed home with optimistic thoughts.

*I found this online to help understand her possible new diagnosis of PPIRee:

Eosinophilic esophagitis (EoE) and gastroesophageal reflux (GERD) both cause esophageal eosinophilia. Reports show that esophageal eosinophilia meeting criteria for EoE may respond to acid suppression mono-therapy. Consensus guidelines have termed this entity "PPI-responsive esophageal eosinophilia" (PPIRee) and recommend a trial with proton-pump inhibitors (PPIs) prior to a definitive EoE diagnosis. The mechanisms of PPIRee and whether this represents a sub-phenotype of GERD, a sub-phenotype of EoE, or its own distinct entity remain unclear.

Delayed Does Not Mean Never

About a year ago a special mom friend told me "delayed does not mean never".  This is so true!  And Callie proved it this week.  She is now officially a walker!!!  I posted in February when she started to take steps.  That was a start, but it really took her until this past week to feel confident on her feet and finally start walking more than crawling.  It took her two and a half years, but she did it!!!  She was walking all over the house this weekend:

 

I mentioned Callie using a walker in my last post.  About three weeks ago they put her in a little reverse walker during a PT session.  Much to everyone's surprise and joy she took off in it.  That afternoon I was calling, texting, and emailing all of my special mom resources trying to get my hands on one that we could borrow until we got our own.  Within 24 hours we had one in the house!  Callie did well with it, but quickly got tired of dragging it around at home.  It worked better when we would leave the house.  Anyway, the following week she started getting more confident as I mentioned in my previous post and now this past week she suddenly really got the hang of walking and pretty much wants nothing to do with the walker!  The first day or so I would tear up when I turned around in the kitchen while cooking and would see her walk in.  It is just so moving to finally see her on her feet.  And she is so happy and proud of herself!  Here is a video of her from yesterday:

When Callie was diagnosed they said she may never walk or talk.  With much relief we can now check walking off the list.  Talking is still an unknown, but we will not give up hope.  Delayed does not mean never.

Callie at 2 1/2

Our little girl is now 2 1/2 years old!  This means her big brother is now 6!  Time is flying.  I would like to document where Callie is in terms of her milestones.  Her skills are scattered so it is not possible to say she is functioning at X age right now, but this gives an idea of where she currently stands:

Stats: Callie is now 34 inches tall (12%) and weighs 24 pounds, 13 ounces (9%).  We are in such a better place this year when it comes to growth thanks to her G-tube!

Gross motor skills: Crawling is still her preferred method for getting from place A to B, but she also tall-kneel walks and is taking more and more steps independently.  She can easily get across a room on her feet, although still somewhat resembles Frankenstein and lacks confidence when it comes to walking on hard surfaces like our tile kitchen floor.  She has plateaued over the past couple of months with walking, but I swear she has improved a little over the past week.  One of her PTs believes the movement in her trunk is improving, which may be thanks to her hippotherapy sessions.  She also now has a little reverse walker!  A separate post and video are coming soon about this development.

Fine motor skills: Surprisingly she holds a pencil properly and loves to "write".  Sometimes I think she holds a pencil better than Owen, but what she is able to draw is delayed.  She can make a horizontal line and almost a vertical line, but not a circle.  Tasks like building block towers can also be challenging.  She seems to have problems with some visual perceptual tasks and quickly gets frustrated/loses interest.  But when it comes to a shape sorter, she is doing great!  Remember the red & blue Tupperware shape sorter of the 80s?  They still sell them and I bought one when Owen was little.  I recently brought it out thinking it would be too hard for her (it has 10 different shapes, some of which are more challenging), but much to my surprise she does very well with it! 

Speech skills: This is our biggest area of weakness.  She still has limited sounds and no words except "mama", "baba", and sometimes "up-a" for up and "ba" for ball.  It takes a lot of effort to form these words and she will only say them if you prompt her and wait.  One day recently I was able to elicit a "moo" sound when we were looking at a picture of a cow, but it was very difficult for her to form her mouth to make this sound and she has not repeated it yet.  But her speech therapists are optimistic and feel she is getting more consistent.  She is definitely more vocal than she used to be.  We do not yet know if she will be able to verbally communicate, but are holding out hope.  It is comforting to know even if she is not able to speak in the future she will absolutely be able to communicate.  She is so expressive!  It is hard to explain, but especially her eyes and face are expressive.  She lights up and her eyes get wide when she wants something.  She also points, uses basic signs, and has distinctive sounds when she wants to get your attention or is complaining that Owen took a toy from her or is otherwise bothering her like big brothers sometimes do.  Is it encouraging to see her so expressive and I pray her brain continues to rewire and allow her to find ways to get her thoughts across, hopefully eventually with words. 

Feeding skills: This goes along with speech and is also an area of great delay, but again she is making progress.  Although she receives all of her nutrition through her tube (mostly at night), she is interested in eating and easily takes bites of food.  But once the food is in her mouth, she has trouble moving it around and chewing.  Due to her EoE and our continued effort to work through all foods to determine what is safe in terms of allergies, she is still currently only allowed fruits and vegetables.  She easily eats chunky soft food like chunky applesauce and mashed fruits and veggies.  She cannot chew raw food like a slice of apple, but loves chips!  She can have things like apple chips, sweet potato chips, Fritos, corn tortilla chips, etc.  We give her little pieces and she is happy to munch on them while we eat dinner together as a family.  She is starting to learn to feed herself things like mandarin oranges with a little plastic kids fork.  You can tell she is proud to be at the table with us showing some independence.  My quest for the perfect sippy cup continues.  She is starting to be able to drink from a straw, so one of the cups is somewhat working, but she still leaks a large amount of the water that she takes in so we still have messes when trying to drink.  We will get there eventually!

Social & Cognitive skills:  These are her strongest areas.  As far as I can tell, she is not very delayed socially.  She absolutely loves other kids and is constantly imitating Owen.  She went through a little two year temper tantrum phase, but luckily got over that quickly after we implemented time-outs.  She would sit on a time-out step while getting control of herself like other kids do at two.  Although it is a stretch to say I enjoyed these spells, there was some amount of joy seeing her function like a very typical two year old!  Cognitively she seems to be pretty sharp.  She will quickly pick up new signs and you cannot get much by her.  She is very aware of what is going on and does not miss much. 

Most days I do not think about Callie's delays.  My memory of exactly what Owen was doing at this age has faded and unless I see another two and a half year old at the playground, I do not compare her to others.  She is just our little girl and we just take it one milestone at a time like everyone else does.  Knowing how hard she works in all her therapies just makes every step forward that much more exciting.  We continue to be thankful that her seizures have stayed away which has no doubt helped allow her to make the progress she has made so far.

The four of us went downtown recently to fly kites at our favorite spot, by the Washington Monument.  This time Allen got Callie her own kite and she was thrilled.  We could not be prouder of our little girl and all that she has overcome to get to where she is today. Much love to you all for your continued support!!

Hippotherapy Success!

Today was our second hippotherapy session and I am happy to report it was a success!  I felt so relieved and proud to see our little girl bravely ride old Andy around the arena this week.  Things went so much better than our first session.  :-)

Two Years

Callie was diagnosed two years ago this week.  The good news is the exact date passed without me thinking about that awful day that changed our life forever.  Unlike last year when I woke up remembering exactly what happened one year prior, the day slipped by unnoticed this year.  This is just proof that time really does heal and we are so grateful for that!

Alecia

Last year at this time I was drowning.  It was all I could do to keep my head above water.  It was very difficult juggling Callie's appointments, her new tube feeds, Owen's preschool drop offs (that conflicted with Callie's therapies) and pick ups (that conflicted with Callie's naps), doctor & insurance company calls, my job, as well as keep the house together and food on the table.  I had to take a leave of absence from work (I work part time for a network company, mostly from home).  I was stressed and regretfully often short with Owen.  :-(  Right around the same time we received a huge blessing -- coverage by a Medicaid waiver that helped provide for respite care.  At the encouragement of my new special mom friends who had this waiver and nannies helping care for their children, I decided to take the same step and seek someone to join our family and help with the load of responsibilities that felt quite weighty.  Just days into my search I found Alecia on Care.com.  Her listing indicated she had experience caring for a child with special needs.  When we first spoke I asked her to please tell me about this experience.  She began by saying she was currently caring for a 2 year old boy who had a rare neurological disorder... He seemed to be fine at birth, but then around 4 months he began having seizures.  He was developmentally delayed and had some feeding issues.  I was floored... I could not believe how similar the little boy sounded to Callie and was overjoyed to find someone who could help care for her!  The rest is history.  Alecia joined our family last May and the addition was life changing for me.  Suddenly I could be two places at once!  I no longer had to plan all of the appointments so carefully.  I could concentrate while on the phone because Alecia was giving the kids attention.  I was able to work again and suddenly had no problem handling the load.  I added additional therapies to Callie's schedule.  I spent one-on-one time with Owen.  I cooked dinner without having Callie on my back and Owen hanging onto my leg.  I went grocery shopping by myself (!).  It was amazing.  I was just as busy (there were no spa days or afternoons on the couch catching up on DVR'd shows), but my stress level dropped almost immediately.  Over the last year the kids have grown quite fond of our "Miss Alecia".  Callie is especially attached to her.  She eats better and goes down for her naps easier for Alecia.  She does better in therapy sessions when Alecia is there instead of me.  She affectionately blows kisses to her every day when she leaves.  Also, Alecia and I have developed a friendship over the last year and confide in each other as we go through life's ups and downs.  I feel incredibly fortunate and blessed to have had this past year with her.  Which is why last week was so hard...

Alecia is now expecting a baby of her own and needs a position that offers medical benefits.  Last week she was offered a very good job that will better provide for her expanding little family.  I knew she would be moving on at some point, but we went through a very sad couple of days when it was decided that time would be now.  The new job requires her almost immediately, so we are spending our last week together.  I will miss our daily conversations and all of her help & support.  Owen will miss playing board games & Wii with her and their trips to the library.  Callie will just plain miss everything about her.  Luckily Alecia will remain in the area for now and while she is here we fully intend to remain in touch.  She will babysit the kids occasionally on weekends and I look forward to following the rest of her pregnancy.  We will all be very happy to meet her little one this fall.  We wish Alecia the very best!