Saturday, October 5, 2013

Center for Excellence -- Day 2

October 3, 2013

It is quite common for kids with BBS to have a variety of issues with their heart, kidneys and sometimes liver.  They often have enlarged kidneys at birth and many tend to normalize over time. Some (like my friend's daughter) have kidney failure and have to get transplants.

So on Thursday we woke up bright and early to check on those important organs of Lucy's.  We have had them all checked before, but we always need to keep an eye on them.  

Our first appointment was a renal ultrasound:

Then an echocardiogram
(Those heart chambers looked pretty good I must say...)

Then an EKG.

This pretty awesome cardiologist followed up with us on the echo and EKG:
She said Lucy's heart is strong and doesn't show any thickening which is really good.

Next we met with Dr. Haws in NEPHROLOGY (kidneys).  He's the one who started up this whole clinic idea in the first place (the hero of this story as far as I'm concerned).

After reviewing the renal ultrasound I took these notes from what he had to say:

--Lucy's kidneys look normal aside from some fetal lobulation (a more lumpy appearance common in BBS kids).  The cyst she had on her last ultrasound a couple years ago is gone.

--Anything with a tube (heart, kidney, intestines, etc.) has potential to cause problems in BBS and often times there is a deformity there.  Lucy is lucky and all looks good.

--Good vitamin D usually helps to equal good kidney function (we have been supplementing vitamin D for a while now).

--Be persistent with keeping up on blood tests, urine least annually.  Watch out for UTIs because kids with BBS may manifest symptoms differently from other kids.

--Be sure Lu drinks a lot of liquids, preferably water.  Helps kidney function so much.


Lucy got to go hang with Amy (below) and do all kinds of tests like she was in school while Dave and I answered a lot of questions from the doctor.
Then we took a break while they continued to work with Lucy.  This whole process was about three hours.  When we were called back in we had some kind of bad news.  The doctor was kind of worried about a few things:

Although Lucy is doing really well with language, she cannot express and articulate as well as she should be right now so she scored below average on that.  She has trouble with "wh" questions so we need to work on that.  But her visual perceptual reasoning is on track.

Things we need to do:

--work on "wh" questions

--pay close attention to reading skills and really sounding out phonics.  She is doing great now and scores high with peers but it's so important to keep that up and make sure she doesn't fall behind.  Work on comprehension and "before," "middle," and "ends" in what we read.

--work on rhyming.  She doesn't understand that concept.

--work on story problems

--think about requesting speech therapy again at school to help with her speech & language pragmatics.

--keep an eye on the possibility for dyslexia.

--keep an eye on autistic tendencies.

Yeah, that's a big list.  Kind of overwhelming and kind of a sad way to end the day.  But by this time in the day and this being her thirteenth doctor appointment over two days intermixed with being poked and prodded I'm not surprised and don't blame her a bit if she was a little uncooperative.  Dave and I were feeling uncooperative and a little grumpy by then ourselves to be completely honest!

But it was a good wake-up call to keep all these things in check.

Next we had a great little dinner with the other families there (more on that on 71toes) and then headed to SLEEP MEDICINE.

Some BBS kids have sleep problems which lead to myriads of other issues.  Lucy doesn't have any problem with sleeping, but as long as we were there, they figured we may as well check.  We knew they'd put a bunch of stickers and wires on her but we had no idea it would be to this extent!

Here's the beginning of the process of wiring her up.
That nurse Tammy was so awesome...we LOVED the accents there and she had one of the best.  Plus she was just awesome.

Here's Lu with a few more wires:
She got a DVD called "Busy Town" at the dinner before, and boy howdy were we ever grateful for that thing.  She could barely take her eyes off of it and hardly noticed all those things going on her. I think she was just plain tuckered out too.

Dave and I were cracking up so much when Tammy put that thing on her nose and she didn't bat an eye.

Here she is ready to sleep.
I got to sleep there with her on those cozy beds and she did perfectly.

More on that tomorrow.

1 comment:

  1. My son has BBS. I would so appreciate the contact information for this clinic. Thank you so much. Abby Hendricks