Wednesday, May 30, 2012

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!!

Wednesday, May 9, 2012

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.  :-)

Sunday, May 6, 2012

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!

Thursday, May 3, 2012


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  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!


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