Thursday, February 9, 2012

Exciting day...

Today was exciting! Zadie met her new Occupational Therapist and Speech Pathologists from Early Intervention. They all loved her (of course!) and were really impressed with where she is right now. Zadie showed off all her best moves to the OT, including her almost-crawling and pulling up to stand. She also showed off how dexterous she is.

For the speech pathologist/feeding expert, Zadie did really well with a spoon with some applesauce on it. That was the most exciting part for me. It worries me that she takes 100% of her milk by feeding tube. I don't want her to have long term feeding issues. Seeing how excited she was to get that spoon in her mouth gave me real hope that we're getting somewhere! The therapists also said that they can tell Zadie is trying to vocalize. Hopefully soon we'll be able to try the speaking valve out on her.

Next week, we have an appointment with the surgeon at St. Joseph's to talk about a plan for palate repair!

Thursday, February 2, 2012

No real direction yet...

I've been wanting to start blogging about Zadie's condition and continuing progress.  I'm finally doing it!

A quick recap - Zadie is now 8 months old and was diagnosed with Pierre Robin Sequence the day she was born.  She has a cleft palate and micrognathia (an underdeveloped lower jaw), which makes her tongue fall back into her airway, making both breathing and eating difficult.  She spent 10 weeks in the NICU, and has a G-tube (feeding tube) and a trach.  She used to take some milk by bottle, but now takes 100% by the tube.  We're working on spoon feeding now!  Because of the trach, she doesn't make any sounds.  I never imagined that I would wish to be able to hear my baby screaming her lungs out, but I can't wait for that day!

Other than her main limitations (which are temporary!), Zadie is a very typical 8 month old.  She's almost crawling, and she just started pulling herself up yesterday.  She loves her new skill, but we're still encouraging crawling!  She's also very healthy.  She's only been hospitalized once since she came home (that's good for a baby with a trach!) and hasn't had any ear infections (knock on wood).   She does have fluid in her ears, which is almost expected with the cleft palate, but it is affecting her hearing.  She'll probably be getting tubes soon.

As for the title of this post, we're still kind of up in the air as to the course of action for Zadie, and it makes me more and more nervous as she gets older.  She will definitely need her palate repaired, and that will be done somewhere around her first birthday.  But, there are other things in play and different opinions about the best thing to do.  We've seen three craniofacial teams, St. Barnabas, St. Joseph's, and CHOP.  They all pretty much have a different idea of what to do, and none of them seem to have stepped up to say, we're the best ones to take care of your daughter.  So we're still trying to figure out what to do.  It's a scary situation to have to decide for your little baby which direction to go in, when our decisions will likely have a huge impact on her life.  Right now, we're just trying to keep on top of everything and hope that the right course will be revealed.