Cora's news

Yesterday Cora had physical therapy and occupational therapy with Sarah and Veronica.  They were so impressed with her progress I think their cheeks were sore by the time left our house.  They smiled for the the whole hour that they worked with Cora.  Veronica brought a tent like structure for Cora to work her way through.  It will help encourage her to use her legs more and to try forward movement rather than rolling and turning on the floor to reach her desired location.  By the second try, Cora had the idea of what they wanted and was working very hard to achieve it on her own power.  It is amazing to see this child learn at such a great pace.  When they had worked for 50 minutes, Cora looked directly at Sarah and signed "milk".  They both started laughing and agreed with Cora that so much work was indeed thirsty work.  Thus the session ended with hugs, smiles, and a bottle of milk to celebrate.

Today found Cora at the new pediatric cardiologist office with Dr. Webb.  Dr Webb satellites for Mott children's hospital (University of Michigan).  Dr. Statler (Cora's pediatrician) met us in the lobby of the hospital and we attended this meeting together.  Yes, you read it right, Cora's doctor went with us to meet the doctor.  As always, Cora was weighed upon arrival and it showed she hasn't lost any weight since yesterday...yeehaw!  That means she is still gaining, or at least, not losing!  Once Cora was weighed we were given a room and we waited, and waited, and waited and waited......one and a half hours we waited.  The great news about this?  Dr. Statler and I got to have a girl chat and Dr. Statler also got to hold Cora for as long as she wanted too.  But even after waiting this long it was time to not be courteous and look for some action.

<< I have a theory that they don't put clocks in the exam room because the doctor's don't want you to know how long you have waited.  The advantage of this?  By the time you realize that you have been sitting there awhile and look at your cell phone you are surprised to see how much time has past.  The disadvantage?  By the time you realize you have been sitting there awhile and you look at your cell phone you are frustrated that you have been forgotten for an hour and a half.  It was reassuring though to have a doctor sitting with you and have that doctor agree that this was not OK.>>

Despite this long wait, the report was good news.  Cora's heart is not worse than it was and she looked great on the EKG and her overall appearance was pleasing to the new cardiologist doctor.  The other good news?  The cardiologist is lowering her diuretic doses to two times a day instead of three.  The doctor thinks that being on so much diuretic might be the underlying problem for the weight gain.  We will see in a few days if this is the case.

So for the next few weeks we stay with the weekly weigh-ins, see Dr. Statler and keep working on lowering the diuretic doses and Cora will be monitored closely to make sure she tolerates the lowering of the diuretic doses.

And the purple hands that Cora gets when she is working hard or playing hard?  That is a normal response for some children with Down syndrome.  It is a mechanism in the body that shuts down capillary refill and it turns the hands and sometimes feet purple.  Disconcerting for the parent, but not uncomfortable for the child.  Thanks for that extra tidbit of information Dr. Webb. One less thing for me to worry over...another yeehaw!

It was great news my friends!  I and Dr Statler shared the biggest grins and hugs when we left there today.  You would have thought we were two giddy teenagers we were so happy.  But it is happy that is well deserved....for Cora has worked hard this past ten months to finally have a cardiologist doctor's appointment that was all good news.

 Cora (and big sister Emily)  after arriving home from the long day.