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Hi Everyone,

Well, I’m a little late on this post as Paige turned two on April 27.  What can I say?  I’m on special needs time!  (Always running late)  Paige is now approaching 27 months, and while her accomplished milestones list is short, she is actually doing very well.  Her health has been exceptionally good, and she is a VERY happy girl.  She is getting stronger by the week.  Of course, weight gain continues to be an issue.  If she is teething or has bad allergy symptoms, then she tends to not tolerate feeds as well.  In these situations, we have to decrease her volume or else she just pukes everything up.  Right now she is tolerating well.

She is currently at 15 lb, 8 ounces and 30.5 inches long.  She recently started rolling, but then goes through phases that she slows down and isn’t as interested in moving that way.  She is also really starting to explore her environment with her hands/fingers, which she did not do before.  She loves “petting” carpet, sheets, pretty much anything that has a texture!  This is great because that means she is interested and is also learning.  She has not said any words…the only verbal communication that is clear is when she does not want to do something…she will say “uh uh” (in a very no-like tone).  She is not eating anything significant by mouth, but we do give her tastes of things to try.  Nothing really sticks because she hates anything to be near her mouth…with one exception…she does give kisses now.  It’s very obvious she understands what “kiss” means, and she will clearly let you know whether it is ok or not.  When it is not ok, she pushes your face away and says “uh uh,” and when it is ok, she will hold very still and once your lips touch hers, she will slightly pucker.  It is definitely a heartmelter!

Good news!  Paige’s kidney reflux resolved, so she no longer has to be on a a daily antibiotic (one less thing!).  She had a 24 hour EEG at the beginning of June that showed a very short seizure in the middle of the night, so we have increased her keppra dose to .75ML in the AM and 1.25ML in the PM.  She is a little fussy and harder to get to sleep at night for the first couple weeks of an increase, but all in all, the generic version of Keppra is suiting her well.  More good news!  We won’t have to worry about a heart procedure for her ASD until she is at least 22 lbs.  We just need to follow up with the cardiologist every six months to monitor.

Paige also completed a preschool prep class at GiGi’s Playhouse (a center primarily for people with downs syndrome, but they help anyone else that is interested).  She did great!  She loved all the songs and being read stories to.  She was surprisingly very attentive and interactive the entire 90 minutes of the class.  Her favorite things are people (especially if they cuddle with her), music, and being thrown up in the air by her dad!

Finally, insurance has covered a proper wheel chair stroller and a high/low chair for around the house.  It is wonderful, although it is a very heavy contraption, and I can’t imagine for a second hauling it around all that often.  It will definitely come in handy, and it will also help Paige with her core strength, sitting positioning, and it will be much more healthy for Paige to be sitting upright more often versus always laying around (good for lungs, good for digestion, etc etc).

Prayers to all the WHS families out there that are working so hard to keep their kiddos happy and healthy.  We may make it look easy at times, but IT IS NOT.  But the kids definitely make all the hard work worth it!  (I mean, just look at her smile!)

Cheers!  Keely Absher