Our Summer Update

Let me give the quick and skinny of things:

Our summer was fun, full and fast!  Thomas has been going, going, going which has been great for him.  He has stayed very active.  He has his regular bumps and bruises from falling or running into things which we have found to be normal with him.  Still not sure if its his low muscle tone or his eyes but its just him at this point.  It takes a lot to knock him down.

The biggest issue we have this summer is his ears.  We have still had some issues since our last ENT appointment.  He had an ear infection in his right ear which still has the tube in place that cleared up with antibiotics.  Now his left ear is tender, he is constantly messing with it telling me its bothering him.  I took him to the pediatrician and she said it did seem tender but she didn't see anything that showed an infection.  We did the drops twice a day for a week and they seem to do nothing but make Thomas scream in agony and pain.  I did the drops Monday through Friday and then quit.  Clearly they weren't working and just hurt him more.  I am debating on moving up our ENT appointment which is currently set for September 18th.  

Thomas has started going to preschool and loves it!! 

We are about to get into the season of specialists appointments.  Already set up is our follow up with the Neurosurgeon and the Endocrinologists.  I am still in the process of reviewing our appointments and specialists to set up the rest of the appointments.

Another issue that has surfaced in my discussions with other KFS parents in his heart.  A heart murmur in a normal child, without over complications, is not a big deal.  However, there is a history of patients with KFS that has a heart murmur that also have ASD and VSD.  We are due back to see him again in February of 2014.  I feel confident in waiting until then, but I like have more information to make sure he is screened for anything that might be overlooked.  I am not one for unnecessary testing, but as another mother said when it comes to certain things its never unnecessary.

I will be sure to keep you all informed as the appointments roll through and if anything changes.  In the meantime keep the prayers coming, they work!!

Thomas first day of 3k.  Still wearing 18 month clothes
and even some of those shorts are falling down.  Doesn't
slow him down and it never will!!

John 16:33 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.