The Beginning of The Answers...7/3/06

July 3, 2006 was the first day that we started getting some answers to the big question, "What is wrong with Lexi??" July 3rd was a very hard day. We had convinced ourselves that maybe nothing was "wrong" and Lexi was just "low tone", but our neurologist suggested that this might not be the case. I sound very confident and brave in this e-mail to my mother-in-law, but I can tell you that we were scared to death.

July 6, 2006

"The poor angel has been through the ringer this weekend!! She had her neurology appointment on Monday and it was quite a day!! He wants to run some additional tests to make sure she's a-okay...apparently there is a very small concern that the hemangioma on her back could be a sign of Spina Bifida Occulta which sounds MUCH worse than it is...(from WebMD) Spina bifida occulta is the mildest and most common form. The spinal defect is hidden under the skin and does not usually cause problems or need treatment. Doctors estimate that 10% to 24% of the general population unknowingly have this spinal defect.2, 3 In some cases, a dimple, depression, birthmark, or hairy patch forms over the skin where more than one vertebrae is affected. This is referred to as occult spinal dysraphism (OSD).
In order to check for that, he wants to do an MRI, which means she has to go to Children's in Boston as she needs to be sedated for the MRI. This meant that she needed to have some blood tests, an EKG, and they tried (very unsuccessfully) to obtain a urine sample. Needless to say she was one unhappy kid on Monday. Then, to top it all off, she now has conjunctivitis, and Mommy has to struggle with her three times a day to get the darn goop in her eye.
So, it's been tough for the poor kid, but she's a toughy and handling it well. We will, of course, keep you updated on the MRI, etc. I'm sure everything is fine, but I'll be happy to have the results back soon."