Saturday, January 11, 2014

Callie at 4 (and a little)

It is so good to finally sit down and write an update about Callie!  I think about writing here just about every week, but can never seem to carve out the time.  My days are filled with work, appointments, taking care of the kiddos, keeping up with the calls & paperwork required for Callie’s care, and keeping the house together.  I don’t have the energy in the evenings and try to rest/recharge on the weekends.  So that is why many months have passed since I have posted anything substantial!  But it is good to be back.  :-)

Where to begin…. Well, Callie is now 4 years old!! She is growing up into this amazing little girl.  Sometimes I just stare at her in disbelief.  I am in awe over all that she is. 

Like I did last year, I want to document where she is in terms of development at 4 years old (and a little, since I am late with this post!):

Stats:  Weight 30.2 lbs (10%), Height 38.25 inches (10%), BMI 25% -- We have kind of stalled out when it comes to weight.  She has unfortunately not gained any weight in the last 6 months.  But this does not surprise me because there have been big changes this year with her feeding.  She started out the year getting most of her nutrition from tube fed formula at night and high calorie blended food during the day.  Gradually we transitioned until her night feedings were eliminated around May.  She was then eating orally and getting her blended tube food.  Around that time she was getting quite plump (for the first time in her life!).  This is when she weighed in at 30 pounds.  In the following months her oral motor skills required for eating improved dramatically until we were able to phase out almost all of her blended food.  She now eats just about everything orally.  But as we phased out the feeds, her calories decreased and she leaned out.  I do not feel too alarmed about her not gaining weight because I feel like her weight was artificially high last spring due to her tube feedings.  I believe she is currently at a healthy place and her growth is similar to where Owen was at 4 years old.  Their body types are the same and I think Callie is where she naturally should be. Unfortunately, Callie’s pediatrician is slightly concerned and wants me to start taking her to a nutritionist again to confirm she is getting the calories she needs.  I have mixed feelings about this.  On one hand, I am happy to take her to any specialist and typically follow our ped’s wishes, but on the other hand, I feel like this is somewhat of a waste of time.  She is eating well.  She still can’t chew difficult foods, but overall she can eat most things (with care… pieces are cut small, soft foods are selected, and we monitor her closely to make sure she is not at risk for choking).  I just don’t think she is capable of growing into a big girl (Owen is not big either).  So we will see… I will make the appointment, but don’t plan to go to anyone regularly as long as Callie continues to eat well.  I may just start supplementing with whole milk and blended food through her tube more often if she continues to stall out at 30 pounds.  We also continue to administer meds and give water through her tube.

Gross motor skills: Callie continues to slowly make progress in this area.  She has enough motor skills to be functionally independent, but her gait continues to be off with her toes coming down first and then extension in her knees.  She wears AFOs all day to continue to help correct these issues.  She also cannot run and is barely able to jump despite taking it upon herself to practice nearly every day.  She continues to LOVE trying to jump.  She has mastered the trampoline and now gets about an inch of air off the ground.  She is one determined little girl and will get this before long!  She is also still working on learning to safely walk down stairs independently.  She knows how to walk down, but can fall easily.  She has made progress with her stability and now more easily walks across grass, mulch, and other uneven surfaces.  She can walk up playground steps and get herself situated to come down the slide, and can also climb up playground ladders with assistance.  Overall she is much safer outside with less falls.  All of this said, while observing my 18-month-old niece over the holidays, I realized Callie is still way less stable than what is typical.  For instance, as I watched Rosa dance in her dress shoes in our kitchen, I realized Callie would never be able to walk across our tiled floor in dress shoes, let alone dance, without slipping and falling.  But this is okay.  This is the girl that we were told may never walk.  So I tell myself even if she never improves beyond where she is today, I am over the moon that she is on her feet and can move around independently.  Callie continues to attend two PT sessions per week… one privately and one at school.

Check out her progress on her trampoline!  Compare this new video to what I posted here in September 2012!!!

Fine motor skills: Callie is doing well with fine motor skills.  She loves to cut paper with scissors and trace shapes and letters.  I’ve lost track of exactly what is typical at this age, but feel she is doing pretty well.  Her speech app also requires good fine motor skills for its small icons and she does very well without a key guard.  She holds a pencil or crayon properly, although recently has started switching back and forth between her right and left hands.  I’m not sure what that is all about and hope she settles with her right side soon.  Callie continues to attend two OT sessions per week… one privately and one at school.

Speech skills: I’m sad to say after reading my update from last year, not much has changed.  We still have almost no words and pretty much the same limited sounds.  Her SLPs can get more out of her, but nothing comes spontaneously except “Baba” for Allen and “ba” for bus (every time she spots a school bus).  Every once in a blue moon she will say “mama” when I arrive home, but when calling to get my attention she does not say mama.  One exciting development within the last month is getting “me” out of her during sessions with one of her therapists.  Speech is our main area of focus.  We are hitting it as hard as we can right now.  Callie receives five hours of speech therapy a week!  Three of the sessions now use PROMPT*.  We are holding out hope that this might be our miracle therapy.  Everyone feels she has a lot of potential.  It helps that her receptive language is on target and she is a motivated little girl.  Please continue to pray this intensive therapy is able to work with Callie so that we can finally hear her no doubt beautiful voice and all that she has to say.  We are also continuing to pursue using her iPad and Speak for Yourself app, but admittedly it often gets left behind.  One goal of the new year is to keep the iPad with her at all times and hopefully see this communication tool used more regularly.  We just purchased an iPad Mini in an attempt to make her device smaller and easier to carry and keep with her.  Look for more updates on our progress with AAC in the coming months.

Social & Cognitive skills: Like last year, this continues to be her strongest area.  She loves the other kids at preschool and has a few little friends.  Cognitively she seems to be doing very well.  She is starting to recognize letters and does great with basic preschool activities involving colors, matching, etc.  

Parents were invited into her class in November for American Education Week.  Here is a little video of I took of her during role call at circle time.  The teacher asked if she was at home or school today and she quickly answered with her talker!

Like I have mentioned before, I typically do not think too much of Callie’s delays and challenges. I chose to instead focus on what she CAN do.   That said, I still have moments when things hit me.  It was such a blessing to spend the holidays with my nieces, but I found myself looking in awe at Rosa (18 months) as she maneuvered around the house with ease.  She quickly scrambled up and down the stairs.  She ran around and was quite the dancer!  One afternoon, she was interested in Callie’s trampoline, but had never been on one before and didn’t know what to do with it.  Callie proudly climbed on it and demonstrated her jumping skills.  Rosa watched her once, and then climbed up herself and immediately started jumping.  Moments like these sometimes hit me hard.  I watched 7-month-old Anna figure out how to transition from sitting to crawling, and back to sitting within the course of one week.  I watched and appreciated all of her milestones that no doubt no one else noticed – the way she reached across midline for a toy, transferred it to her other hand, brought it to her mouth, lost and caught her balance, etc.  While watching I felt happy and relieved for my dear sister that Anna and Rosa were so easily meeting all of these milestones, then sad when I realized how hard it was for Callie to accomplish each of these tasks (all with the help of hours and hours of early intervention therapy), even sadder noticing her much younger cousin already passing her up in the areas of speech and gross motor skills, and then happy again thinking about how far Callie has come.  I do not take anything for granted and say a prayer of thanks every single day that we are where we are today.  Every time I write about Callie’s development we are moving FORWARD.  It might be slow, but we are getting there.  She seems to eventually accomplish everything in her own time.  For that I am so incredibly grateful.

Callie & Anna (7 mo.)
*PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient’s articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence. The technique develops motor control and the development of proper oral muscular movements, while eliminating unnecessary muscle movements, such as jaw sliding and inadequate lip rounding

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