Jacinda's Appointments Today

Today, we went to CHKD to see Jacinda's craniofacial team of doctors.  We got mostly good news.  Here's a rundown of what happened ....

1.  First we saw an orthodontist.  He thought Jacinda's teeth looked great.  He said she won't need any orthodontic or surgical work done until she gets her permanent molars, which is around age 6-7.  He recommended we start taking her to a pediatric dentist.  He said that she will be spending a lot of time in a dentist's chair in her life, so we might as well get her used to it now.  Fortunately, the dentist he recommended IS covered by our insurance!

2.  Next, she saw an ENT.  He cleaned all the wax out of her ears.  We've had several doctors tell us she has tons of wax, but no one has wanted to attempt to get it out!  We held her down and she actually did really well!  After that, the ENT looked in her ears and said there was NO fluid.  Zero.  For a cleft kid, that's amazing news!!!  This means no ear tubes!!!!!!!  Structurally, he thought everything looked great .... ears, nose, mouth.  He was glad to hear that she will have another hearing test next month.  He told us to please call him if we had more questions, or if she needed the wax cleaned out again.

3.  Next up, her surgeon.  He thought her palate looked great.  She does have 2 teeth coming in in the roof of her mouth.  It's kind of strange, but totally normal for a cleft kid.  He thinks one of them might start to cause problems, so he thought the pediatric dentist idea was definitely a good one.  The other issue we talked about with him was Jacinda's nose.  Her left nostril is very small.  During her palate surgery, he did try to make it a little larger.  He had warned us beforehand it would be difficult.  He said it's harder to make something bigger than smaller.  Right after surgery, it looked great.  Now, it's collapsed back down at least to where it was before.  The problem is that whenever she has a runny nose (which is often), that nostril gets crusted shut!  He wants to wait at least 6 months to a year before even thinking about another surgery on it.  Even then, he's not sure if we should do it.  So we'll reevaluate sometime next year.

4.  Finally, the speech pathologist (SP).  This is where we had probably the biggest concerns.  With just a brief observation, the SP put Jacinda at about the level of a 16 month old as far as expressive language (this is what you can say or express) goes.  Her receptive language (this is what you understand) was much closer to her actual age.  So the SP was concerned that there was such a large gap.  She was impressed that Jacinda has improved so much in the 7 months she's been home.  Basically, she thinks that our current speech therapist has done a good job, but now it's time to get aggressive.  The SP thinks Jacinda would benefit from speech therapy done in an office setting rather than here at our home.  So we got a referral to their speech therapy department.

So here's our To-Do list we took home:

1.  Call our insurance to find out how we can switch speech therapists.  Our insurance makes this very complicated, of course.  Right now her therapy is done through the Virginia Beach school system.  Our insurance has no "in-network" speech therapists in our area.  So that will be a loooong phone call!!!
2.  Once we figure that out, make an appointment with the new speech therapy office.
3.  Call Jacinda's pediatrician and get an appointment to get her evaluated for allergies.  We had hoped her constant runny nose would get better after her palate surgery.  It hasn't.
4.  Call the pediatric dentist.