Thursday, September 17, 2009

Dear Loved Ones,

Thanks to all for your phone calls, notes, and emails of support. We cannot describe how fortunate we are to be blessed by each of you. Today, we heard from Seattle Children's Hospital. Now if only the Spokane doctors would call. Alas, we wait no longer. The medical staff at Seattle Children's have reviewed the reports of both the MRI and CT scans (but have not seen the actual images). They told us that there is no rush to get the baby there before September 30th. You can imagine our relief. The baby is scheduled in the Neuro-Oncology department at 2:30pm on Wednesday, Sept. 30th. The next day, he is scheduled with Ophthalmology at 3:00pm. We have no idea what will take place at these visits beyond a consult. Our baby continues to thrive. He offers us endless giggles and is starting to turn over. Like the Syro-Phoenician woman, we beg Jesus for the crumbs that fall from the table.

Visit Tito Sr.'s blog for poems and photos.

CT -Scan

Today, baby Tito had a CT-scan. We now just wait like starving penniless children in front of bakery window.

Tuesday, September 15, 2009

Baby Tito and his NF1

Dear Friends and Family,

Our son is now 5 1/2 months old. We cannot describe what a joy he is in our lives. Who ever knew that a child could be such a life-changing blessing? The toughest thing is looking at him and knowing that he has Neurofibromatosis type 1 (NF 1). What does this mean?

NF 1 is a congenital disorder
. Some 1 in 3,000 babies are born with it. It is a peculiar condition. No one can predict how NF 1 will play out in a person's life. It just happens to be the case that our baby has developed some of the features of NF 1 very early, starting with cafe-au-lait spots on his skin when he was 7 weeks old. These spots spread to his right eye by the time he was two months old. The good news is that Tito can see.

The concerning part is that the baby has developed a complex set of rare problems in his brain, all related to his NF. These include:

-a cyst
-a plexiform neurofibroma mass
-sphenoid dysplasia (sphenoid bone deformation at the left temple)
-thickening of the dura (the lining between the brain and skull)
-bulging left eye

Here is the latest. On Wednesday, September 16, the baby will have a CT scan. This study, along with the MRI back on August 7th, will help the group of doctors in Seattle determine a course of treatment. Depending on the results of the CT scan tomorrow, we may be heading to Seattle Children's Hospital by this Wednesday or Thursday. If the baby's manifestations require no immediate attention, then we are scheduled with a group of doctors on September 30th in Seattle. I think the immediate goal is to try to save the left protruding eye.

We are hopeful that help can finally reach our son after being caught up in the Spokane medical system where no help can be given to the baby and where the baby's doctors have not collaborated. (Baby Tito has seen 7 doctors since his birth).

Thanks to you all for your caring thoughts, notes, and prayers. You make all the difference as we face challenging moments.