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!!


Anne McQuary on August 8, 2012 at 10:57 AM said...

Hi there, I found your blog by accident. I was looking up information on Dr. Dobyns. My son has a rare syndrome, very different from Callie's, but similar in that it's quite rare. Your daughter is so beautiful! There is so much light in her eyes, and her spirit and intelligence show through. I just wanted to mention something regarding her communication skills. I work with kids with severe autism, and so much is being done to help them communicate (the ones I work with are nonverbal as well, and many have very low motor tone). For the last two years we have been working with iPads for communication and they have been a miracle breakthrough for many of our kids. There is an app called ProLoQuo to Go that is a communication app, but I'm sure there are many different ones out there. The thing I like about this program is that it's customizable - things can be made bigger or smaller for kids with different fine motor issues. It also helps our kids who are verbal in putting together complete sentences. Once they are making progress with verbal skills, we fade the use of the ipad.

Pinterest also has a huge range of fine motor exercises that are really fun and creative that I will be taking back to school with me when summer break is over!

Thank you for introducing us to your beautiful daughter! I wish you and your family all the best!

Lisa on August 9, 2012 at 10:52 PM said...

Thank you so much for taking the time to write! We were able to get Callie an iPad, but I don't think we are using it to its full potential yet. Thanks so much for the tips... I will look into ProLoQuo to Go and hadn't thought of looking on Pinterest for fine motor exercises.

Thank you again for taking the time to help and for your kind words.



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