Friday, June 14, 2013

The sleep study is scheduled!

The sleep study is scheduled.  Unfortunately, it's not until August 21!  I guess the doctor wasn't kidding when he said it would be about two months away.  The lady I talked to said that there are always cancellations and that I can call every other day to check.  So I guess that's what I'll be doing for the next two months!  Hopefully we'll be able to get in sooner.

Tuesday, June 11, 2013

CHOP update

We all took a ride down to Philly today. It was a crazy rainy day which made the trip even longer.  Because of the weather, I guess a lot of the appointments before us were running late.  Zadie's appointment was at 11:20 and we didn't see the doctor until after 2!

Dr. Javia looked at Zadie's ears.  She has an infection in her left ear, which we suspected.  Since she has a tube in there, it didn't seem to be hurting her, it was just draining a lot and she kept picking at it.  She was prescribed antibiotic drops for that.  The tube in her right ear fell out and is still sitting in her ear canal.  He said it will eventually fall out of her ear.  Even though she didn't pass her hearing test in that ear in April, possibly because the tube is out, we will just monitor it for now and will not take any action.

Since Zadie is doing so well with the capping, we are now cleared to get scheduled for a sleep study.  Unfortunately, Dr. Javia said it might be a couple of months until we can get in.  But, he recommended that we keep calling to ask about cancellations, etc.  If the sleep study goes well, then Zadie will be scheduled for decannulation.  When she had her bronchoscopy in September, Dr. Javia noticed that her adenoids were rather large, and they will possibly be a problem.  We won't know that until the sleep study, though.

I'm waiting for the sleep study department to call me with a date.  I'm very anxious about all of this.  They will not attempt decannulation in the winter, so we have a limited amount of time to get everything done.  It will all happen eventually, though, so if it doesn't happen this year, all is not lost.  I'm just really hoping it does!

As all good trips to Philly end, we stopped at Pat's for some cheesesteaks.

Sunday, June 2, 2013

Zadie turned 2!

Zadie turned 2 on Friday!  She had a fun day, spent some time at Jonathan's preschool, then we went to Chuck E. Cheese and then out to dinner.  For the first night in over a week, she didn't need oxygen while sleeping.  Yesterday, Grandpa and Uncle Sammy came over.  I made cupcakes and we attempted to sing happy birthday, but it was confirmed that she really doesn't like people singing happy birthday to her.  She gets very upset!

Just an update on her progress...she is talking a lot. She still gets speech therapy once a week, and is saying all sorts of words, including uh-oh, oh no, water, wow, mouse, and the old favorites mama, dada, baba and baby.  She's getting big, too.  She went to see her pulmonologist the other day and she's now 24 pounds, which is great.  She's moved up in percentiles.  She's eating more and more.  She's also getting very fresh, scuffling with Jonathan and throwing toys.  Typical 2 year old, I guess!

Fresh out of the oven May 31, 2011

May 31, 2013

You can really see the difference in Zadie's chin from her newborn picture to her current picture.  One of the things about Pierre Robin Sequence that made it difficult for Zadie to eat and breathe was the recessed chin (micrognathia).  If she was born at another hospital, she probably would have had a jaw distraction, but St. Barnabas doesn't really do them and they opted to let her chin grow out on its own.  A plastic surgeon at CHOP wanted to do the distraction later on in order for her to lose the trach, but we decided to wait and see what happened.  So far, I think we made the right decision.  Her chin has grown out a lot and her trach is capped all day long, meaning she's breathing through her mouth and nose.  We're hoping she is decannulated (loses the trach) this summer!