What's New With Emilia

Before Emilia starts two mornings a week of preschool next week, I thought I would put together a quick update of where she is developmentally now.

Emilia is growing.  She now weighs 30 pounds and is 37 inches tall.  Her growth curve and physical proportions make all of her doctors and therapists very happy even though she is still tiny for her age.  Except for the random piece of clothing that's an odd size, she now wears 4T.  We recently went through pants that fit her at the end of the winter and most of them are too short now.  Then I got out what I thought would definitely still be too big for her to wear and, to my great surprise, most of it is a perfect fit.

Icecream for dessert 

Emilia recently had a check up with her cardiologist, including an echo and a EKG.  Everything looks great and she has no restrictions or medications.  The leak around her heart valve remains trivial which has no negative effect on her health and development.

Emilia has been working hard this summer to acquire new skills.  She can now ride a tricycle and steer it completely independently.  She recognizes and names 18 of the lower case letters (remember she already knows all upper case ones) and the ones that still give her a little trouble include b/d/p and m/n.  I can see why.  And we have begun introducing the letter sounds which seems to be quite fascinating to our little girl as she has fairly quickly picked up about a dozen of them.  Emilia still struggles with pre-writing skills, but can now hold writing utensils correctly.  For the most part she only produces scribbles, but she tells us what they are supposed to be.  She definitely wants to write letters, but it's still impossible for her to do so without hand over hand help.  However, she is very creative and always finds ways to produce letter shapes.  For example, she uses a pool noodle to make a U or L or X and recently used the coil of a reading light to make a J and an O.  She gets the concept.

Riding a plasma car all by herself

Emilia effortlessly counts to ten and tries to go up to 14, but often leaves out the 11.  She likes to count her own jumps on the trampoline.  We have been trying to teach her quantities and for some reason, she understands 2.  She can always tell us when she sees or has two of something, but so far she hasn't gotten any other quantity yet.  Emilia has also expanded her knowledge of colors and shapes.  I love it when she correctly uses words like octagon.

Speaking of words, Emilia is adding new vocabulary to her repertoire daily.  Some of her recent acquisitions include hummus, yogurt, Kroger, thunder, ring, haircut, octopus, underwear, tambourine, and bathroom. She is also speaking little sentences like watch Kindle, all gone, not now, bye-bye daddy, hi Rex.  She does a lot of combining I with a noun or verb to express her wishes: I eat, I hop, I book, I outside, I turn.  She is also making strides in following more complex instructions, such as push the green button to start the toy or take the toothbrushes back upstairs and put them in the holder.  And the most wonderful thing is her singing.  She knows dozens of songs by heart, even if she cannot pronounce all the words.  That said, Emilia's language delays are finally causing her to feel frustrated as she knows and wants to express more than she is able to say.  This has led to a rather annoying habit of her screaming or screeching to inform us of her disagreement or stress. If anyone has any ideas for how to overcome this particular issue until her language catches up to her brain, please let me know.

Rounding her lips around a whistle

and blowing air forcefully and purposefully -

a major feat against apraxia

As far as self-help skills and fine motor skills, Emilia is making an effort.  She feeds herself very well now and can pour liquids from one container into another without much spilling.  She helps with putting lotion on her surgical scar. She can pull up her own underwear and pants/skirts as well as unbuckle/buckle her shoes.  Emilia also enjoys being a helper for Rex, handing him bites of food and combing his hair.  In terms of potty-training, Emilia has the concept down.  If we don't have to go anywhere in any given 24 hour period, she only needs two diapers, one for nap and one for night time. She is very consistent in letting me know when she has to pee, but refuses to do a #2 on the toilet.  She has basically trained herself to hold BMs until she is in a diaper which I hear is not uncommon.  The main problem is that Emilia rarely notifies us of her toileting needs when we are away from home, so we typically still need to use diapers for any outings.  We were thrilled when she told her therapist mid-session last week, "I pee-pee", signing bathroom to reinforce the request and then actually going.  Slowly, but surely.

Driving Miss Emilia

Our main concern at the moment is with attachment.  We do believe that Emilia is attached to us and recognizes us her family, but still shows some mild signs, from time to time, of an insecure attachment.  She is still friendly with almost all strangers and likes to give hugs to just about anyone if we don't intervene.  We are telling her that hugs are for family and friends and that she can say hi or a give a high five to everyone else.  We are also working on improving her eye contact.  Emilia makes amazing eye contact on her terms, to the point of moving our faces to get us to look at her.  But when she is supposed to look at us, especially when she is being reprimanded or instructed on something she does not want to do, it is difficult for her.  There also continues to be a certain level of non-compliance with what she is told to do or not to do.  This may only be a function of her developmental age, but could also be anchored in insecure attachment.

Feeding her baby

The other area of concern is Emilia's continuing struggle with sensory integration and motor planning across all of her systems which affects her ability to learn.  The problems with motor planning could be related to the non-compliance we sometimes see from Emilia: it may be that she wants to follow through, but is physically unable to do so.  In conjunction with some of her more forward-thinking therapists, we have come to believe that Emilia missed some key experiences and opportunities in her first few years which have left holes in the brain and body connection/foundation she needs for higher learning.  Therefore, Emilia will be starting a weekly hour of private occupational therapy next month, focusing solely on sensory integration and re-capturing the moments she has missed in her earliest childhood via a program called Brain Gym.  We are very excited about this plan and hope to see great improvements for Emilia.

It really is hard to notice the progress sometimes when you're in the trenches of special needs parenting, but we know that Emilia learns something new every single day.  She often surprises us with her skills or knowledge or determination to reach a certain goal.  She is an overcomer who is giving it her all to live life to the fullest with laughter and tears, courage and fear, two steps forward and one step back, love and unsuppressed joy.