Saturday, January 5, 2008

Family updates

Tom's grandmother, Teresa Davis passed away on Sunday from a brain hemorrhage. She was 95. We attended the wake last night and saw family members we hadn't seen in years. The funeral and burial are today, but unfortunately Kylie woke up with a fever this morning so she and I are staying home while Tom and Melanie spend the day with the family. The photo of the girls is from the wake last night. The little girl is Ridley - Tom's cousin Leah's 2 year old daughter. She would be 3rd cousin to the girls? The other photo is of the photo board of Teresa - lots of great images from her life.

On Monday we have Melanie's appointment with the neurosurgeon. Since her diagnosis I have been doing a ton of research on Chiari. I have joined two Yahoo Chiari groups and I have exchanged emails with many, many other Chiari patients who are so helpful in their advice and sharing of their stories. I have a long list of questions for the neurosurgeon on Monday and even sent him an email ahead of time (to warn him mostly that we are coming and to be prepared!!!!). He emailed me right back so that was a bit comforting. Although he already has mentioned that he does not agree with some of the "experts" on Chiari (which is the source of most of my research). It will be an interesting appointment. Tom has suggested that I keep an open mind and be optimistic. After all, Boston's Children's Hospital is one of the most renowned hospitals in the world.

Wish us luck on Monday!!!


lace1070 said...

Know that you and your daughter will be in my prayers for your appointment on Monday. Trust your heart ~ if this doctor discounts everything you say, move on to another one who will listen to you. I actually went to a surgeon who was known for his knowledge of Chiari and related disorders and when I told him that I had tethered cord and TCI has diagosed me he said that they must be smoking something down there at TCI ~ totally discounted their knowlege. Hugs to you ~ Lace

PS ~ Your darling daughters are so precious!

Anonymous said...

Ditto Lace!! If the surgeons are NOT Chiari Specialists their dianosis' seem to be all over the place, inconsistent, and seriously lack knowledge of Chiari symptoms. TCI saved my daughter's sight and SO MUCH MORE! My friend's son had decompression surgery at John's Hopkins. He continues to have serious issues and the surgeon doesn't have viable answers.

I thank God every day for leading our family to TCI!

I pray your family goes forward in search of answers. Trust your "motherly" instincts!! That is my best advice! Don't ever settle unless it feels right!

May your days be filled with love, kindness, understanding, compassion, and relief!

With kindest remembrances ~ Namaste,