Unexpected Transfusion

Today was a long one...especially because 2 kids decided to get up at 2:00 am.  Not sure why that happened but boy it was fun.   We hit up the local children's hospital down here to get a few diagnostic tests done and we arrived go find out they told us the wrong time.  Great start to the day.  After a 4 man battle to cath a very strong willed 4 year old we moved over to St Jude to get blood draws.  Halfway through the day we got a call from our NP who informed us the Avery's platelets were at 13.  Uh. Major issue.  We redrew and got the same results so this evening we spent 3 hrs in the Med Room getting platelets.  Not exactly the day we had expected.  

On a good note,  Avery's eyes looked good and no new prescription was needed.  The Dr indicated we will most likely do surgery at some point but for now we are good.  Her bone density scan revealed that her body thinks she is about 2 1/2,  which is great because she is the size of a 2 1/2 year old.  In terms of age,  she comes in at the 3% mark.  But if you put her on the 2 1/2 year old scale she shows up at 50%.  That means that her body is on par with growth for the age it thinks it is.  If her bone density put her at 4 we may be a little more concerned with her lack of growth.  I'm pretty sure Chubbs will out weigh her in 3 months.  

Tomorrow we have early labs again before her MRI. Not sure if we will get results tomorrow afternoon or not.  We have appts on Wednesday as well and then we drive back to KC.  Thursday we managed to  get an appt to cath her again in KC so we can hopefully get some answers from our new Urologist.  

Keep the prayers coming...

Jenn