Not what we were expecting!!

A lot has happened since I last wrote. Broc has continued to have fevers and sore throat.His ped did not treat him this time round with antibiotics as they are really messing with his tummy and really don't seem to be working.
This past time it took a while to get over the infection but he finally did.He still continues to have tummy pain,fevers daily and only eats a little at a time.

He is also starting to tire more easily again and getting full after eating only 2 or 3 bites.He will play hard or be running for a few minutes and after 5-10 minutes he is exhausted.It is worrying me a little as those were signs that he was showing the last time his heart needed a repair.The slow on eating, getting tired easily etc. I will be watching him for a little while longer to see how he does.

Onto the BIG things.
We saw the Head of Immunology on Wed.He seemed like a very cold person at first but after a few minutes he started playing basketball in his office with Broc.He asked for his whole history not the paper version but the parent version as he calls it.He then looked over a few of his labs that he had done previously.He was very curious about the EBV infections that Broc has had in the past and of course the recurrent strep infections that he has had too.He also redid some of the labs that were borderline or low to have them tested by his lab in New York.
He ordered a ton of blood for testing that will be sent to New York and will be back in 3 weeks time.

What fun we get to make the trip again in 3 weeks.
Then off to MRI - Let me back up.Broc had a CT for his sinuses in Nov '11.When I saw the report there were a few findings that I thought were odd.Needless to say I sent the report immediately to his ped to see what he thought of it.
He was horrified that these findings were not looked into sooner, so he ordered the MRI while we were there.
The ped called last night to say that the original findings of moderate ventricularmegaly was found as well as mild to moderate loss of white matter in the brain.
This is very shocking to us all as we never expected to find anything else was wrong.
There could be a number of reasons for this: it could be part of his chromo disorder,it could be progressive and therefore get worse as he gets older or it could be serious and need treatment right away.

The Nuerologist at Riley is going to look at his MRI this weekend and see if its urgent or if we can wait for a later consultation.

So as usual its wait and be patient.

We did have fun last weekend and take the boys to the Monster Jam in Indy as well as the Childrens Museum.They love that place especially the Egypt exhibit.

I will be updating as soon as get any results.

Hope you enjoyed all the pics.We even stuck one in of Brittany and our dear grandson Bentlley.He is getting so big.

Please keep our family both here and in South Africa in your thoughts and prayers as we are dealing with a lot of things.Thank you for your support.