5 months old

It’s hard to believe January 18th was 5 months ago but here we are.  Life has changed a lot in 5 months!

We went to our first Down’s Syndrome Association of Charlotte (DSAC) meeting this week.  They had childcare so Zach and Julia went with us.  There was a two hour presentation on oral motor therapy.  It’s something I would never have thought of before but extremely interesting now that we have a child with possible speech challenges.  The presenter, Lori Overland, started with telling us the following are myths of people with Down’s Syndrome- open mouth, large tongue, high palate, and inter-dental tongue posture (protruding tongue).  Her work is in strengthening the muscles of the mouth and cheek and tongue to correct those issues.  Almost all Down’s syndrome children have low muscle tone and that low tone also includes the tongue and face.  The tongue protrusion can occur because the tongue muscle needs a workout.  Since the tongue is not as strong, it doesn’t form the palate as is should when the child is an infant.  Apparently, the palate is still formable until 9 months, just like the skull.  She showed us how to do a palatal massage on Natalie before every feeding to keep the shape of it from getting high.  She also showed the group several examples of therapy tools for lip closure, lip rounding, tongue tip elevation, jaw strength.  All a little overwhelming but encouraging at the same time.  We see our speech therapist on Monday and I’m hoping to ask her if she will do oral motor planning work on Natalie.  Our speech therapist is with Early Intervention for the deaf so her main focus seems to be hearing as it effects Natalie’s speech.  After listening to Ms. Overland’s presentation, though, it sounds like we should be starting now on methods to improve mouth muscle strength as spoon feeding quickly approaches.

Friday, I went in to the early intervention office for financial reassessment.  Until now, we had only had to pay 40% of the physical therapy bill.  Due to budget cuts we are now going to start paying 100% of the bills.  Ugh!  They will give us a cap per month, though.  Our current PT is not on our insurance so we have to meet a out of network deductible.  David’s new job will have the same insurance carrier.  I looked up to see what PT, OT and speech therapists were in network.  All the speech therapists were in Durham or Raleigh and the PT and OT’s were not very close to us either, though in Charlotte.  We are now thinking we might need to go on private insurance for the kids and I and keep David with the company’s group insurance.  Much more expensive per month but possibly the only way we can get Natalie’s therapy covered for now.

We were at the beach last week with the Stuckey’s.  Great break.  Natalie had her biggest improvement this week in therapy I think because she had so much extra help from everyone at the beach.  Her head is WAY up whenever she is on the floor.  We’ve also started working on supported sitting- she ‘sits up’ between my legs.  This week, David has been home so we tackled the backyard again.  He got a lot of the hill leveled down. Though still not flat, it looks much better.  Today, he finished up the mulch.  Now, hopefully we can save for a swing set soon.

Amy