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 www.life-and-faith.org for poems and photos.
Tuesday, September 15, 2009
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-lai
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 plexiform neurofibrom
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 manifestati
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).