Playing Catch Up

Since I last updated Keller has had a few things happen in his little life. First let me say, he is doing so remarkably well! He is busier than I ever imagined a kid could be much less a kid with "issues."

In Mid-October we got an email from the respiratory clinic at UNC-Chapel Hill.  (We had been referred to them for an evaluation for a possible diagnosis of Primary Ciliary Dyskinesia following results from a genetic study we are a part of at Duke).  When I called UNC and answered a few questions on the phone it did not sound like Keller fit the profile for a kid in their clinic and we kind of forgot about it. Anyway, in October we hear from them, they have an opening on October 30 and were trying to fill it with a family inside the state since it would be less of a drive.  The catch was that we needed to gather all of Keller's records and images since birth and have them quickly get the information to Chapel Hill.  No problem, only 6 different facilities to contact and consent forms to fill out and fax.  After a dozen phone calls and papers we got it all together and even picked some images up on our way to the appointment.

The machine for the nitrous oxide test. 

The appointment went fairly well and moved pretty quickly: greetings, vitals, history and physical, family history, then the test - a nitrous oxide measurement, and meeting with the doctor over it all. The test was the certainly the worst part.  They wanted to measure the amount of nitrous oxide Keller breathes out. How do you collect air to measure it? We didn't know. Turns out they stick the equivalent of one of those spongy ear plugs with a tube in it into your nostril! Keller did not approve of being held down or having something shoved in his nose! They took about 10-12 measurements that way.  The results along with his history pretty much told the Doctor conclusively that Keller does not have PCD.  Which is great news!

Next, came Halloween, yunno, like the next day. Norah picked out Cinderella characters for us all to be, she and I are from the new Cinderella movie and Phillip and Keller are the mice from the animated version.

November 9th was Keller's cardiology appointment.  We went to the Merci Clinic locally for an EKG and echo and then a meeting with his doctor.  Everything in Keller still looks really good! There aren't many hearts out there like Keller's the holes they had to fill were big but the patch is doing it's job and there seems to be only a small amount of leakage in the mitral valve.  When I asked about any future need for surgery his doctor told me that the thing to watch in Keller is the mitral valve.  He had 3 flaps before his repair, normal hearts have 2.  During Keller's surgery they stitched 2 flaps together, over time there is a chance the mitral valve will need attention again. We do NOT have a time frame for that.  Keller is doing very well-we go again in 6 months! 

Next, we had Keller's first speech therapy appointment.  We had an evaluation a month and some change back.  We found out that he did qualify for speech the paperwork was set in motion.  Last week he had is first visit.  The goals for Keller are to help him get talking but also to help him with swallowing. He is increasingly interested in food and eating which is so very wonderful but he doesn't always know what to do with it once it's in his mouth.  For a while he had a texture issue but now his major eating issue is cheeking food.  He will hold softer foods and skins from fruits and veggies in his cheek for an hour sometimes.  (Gag! Can you imagine holding a fry in your mouth that long?!) The therapist says she wonders if he even remembers it's in there and is going to do some exercises with him to help him be more aware of his mouth.  

G-tube wise, Keller still gets 75-80% of his food through his tube a day.  So we will still be a part of the "tubie" society for a while yet. His blended diet is working very well now and either due to that or growing out of it, he is off his reflux meds.  He still does vomit from time to time, it's much worse when he gets any kind of sick, but it also happens if I feed him too fast or if his food is too cold. 

Finally, we had Keller's 18 month visit.  His pediatrician is very happy with where Keller is right now.  He is 3rd percentile for height (up from 1%) and 44th% for weight (up from 40th%). So he is short but solid, and oh so sweet! The mischief he is capable of is astounding to me, it makes me shake my head but I am glad he feels good enough to cause trouble.  And he gives lots of hugs so I quickly forget about the havoc he just caused.  Thanks for checking in!