Special Kids

Doing therapy with her baby

I took this picture of Clara a few days ago and have been thinking about it a lot since then.    She was getting

ready to play baby dolls and said, “Let’s pretend that this baby has problems like Connor and that she needs help doing stuff.”   I still get this rush of emotions when I think about it – sad that she has this reality in her life, happy that she is just as loving to her baby with problems as all the others and proud that she is so engaged in Connor’s life that she knows what that baby needs!

Clara is usually in charge of saying our table prayer at dinner.  It most often goes something like this – “Dear God, thanks for our food and everything we have.  Please let Lola and Art have a baby or babies and let Tammy and Chris have good baby twin girls.  Amen.”  Now Brent and I know what her prayer means, but recently someone was with us and asked Clara what “good baby twin girls” means.  She replied, “Well they are having twin girls and I don’t want them to have problems…like Connor.”

I know that all of this conversation, prayer and play is really just her working things out in her mind and, honestly, I think she does a pretty good job of it.  But it creates such polarizing emotions in me that I sometimes don’t know whether to cry or smile.  Clara knows that Connor has “problems” and that his life will be different and harder because of them.   She also says frequently (ok, all the time) that she loves her little bro and is so glad he’s in our family and that she “doesn’t care if he has problems.”

Riding in the car cart at the grocery store

I posted that picture on Instagram and someone commented, “Every time I see a picture you post of her, I get more and more excited to see all the great things she is going to do in life.  She is SUCH a special little girl.”  I hold that comment and those like it very close to my heart.  My special girl for my special boy.

And now a few updates on said boy:

We’re still waiting for Connor’s equipment.  #*%!@ pretty much sums that up.

We’ll likely soon be using a Spio vest for him to help with posture.  Because he has such low muscle tone he sits very hunched over and that’s not good, so this (torture) device will help straighten him up.  Hopefully we don’t have to wait seven months for it to come.

Connor had a visit to the feeding team yesterday and while those appointments continue to be long and overwhelming I don’t cry from exhaustion anymore when we leave.  Lots of new recommendations again at this appointment including an increase in his Pediasure since he hasn’t gained weight in 10 weeks and the chance that insurance might cover it!  Yeah!  At about $4 a day for just the Pediasure, it can really add up.

Connor puckering up to give kisses

 Connor is also going to get an augmentative communication evaluation to see how best we can help him learn to communicate.  His Speech Therapist is working on this, too, but more ideas never hurt.   He has a few words that he’ll consistently say: daddy, dog, ba (for bottle), mo (for more), bu (for book), ba (for ball) and sometimes ma-ma.  And then just lots of babbling.

The OT that’s a part of the Feeding Team still thinks that Connor needs hand splits.  Since the little sensory input bands they gave us a couple of months ago aren’t really doing anything, she’s going to fit him for something bigger.  She said he might just have to wear them at night which would be great.

Current requests for prayers and good wishes – for Connor’s equipment to come soon, for him to start biting/munching on things so we can start moving him to solid foods, for his continued growth in strength and balance, for him to start grasping and holding on to things and for our family to be strengthened and renewed as we enjoy a few days at the beach next week!