Crazy Days

We flew out the next morning. Columbus Ohio is farther from Tulsa than I thought and with weather delays, etc. it was a long journey both ways.

look at Hank....loving even a baby coaster...

they had rides at their zoo...Stella didn't like the log ride too much. Hank LOVES ALL RIDES. He is a coaster enthusiast:)

They had a Manatee rehab. facility which was neat.

Stella had her picture taken on every single animal that day:)

I realize she's blurry - look at that snake!

Saturday was Hank's 41st birthday. His last two have been really lousy so I wanted this one to be special for him. Getting good news about Stella was a reason for us to celebrate. We went to the Columbus Zoo and aquarium. We had a great day together!

RPAC

We stayed on the Ohio State campus and when we weren't with doctors Hank got to carry Stella to the RPAC (their rec. center with pools)

Here is her OHIO team: doctor in white coat is Dr. Roach -the head of neurosurgery at Nationwide, and the founder of the pseudotumor clinic. This is the ONLY pseudotumor clinic for children in the world. He has patients from as far as Dubai come here. It opened last year and they have 150 kids. The other doctor is the Opthomologist who works with Dr. Roach since the #1 complication is loss of vision. Both very nice men who also posed for a picture.
So here is the verdict on Stella:
Her optic nerve has gone from a 3+ (scale of 0-4 , 4 being the worst) down to a 1...as far as swelling and bulging. He said she probably has some loss of peripheral due to the severity of bulging, but we won't know fully until she's 8 or 9 when the test is more reliable. Hopefully she will compensate since she's so young and will never notice. Her central vision was not affected. YEAH! She LOVES having her eyes dialted so, of course, they did that again...sarcasm. Dr. Roach the nuerosurgeon said she does not have a blood clot (thrombosis) in her brain where she had the narrowing. That is just her variation of normal. However, she does have a prothrombin gene mutation (clotting disorder) that will be important at different points during her life. The most crutial time will be during late stage pregnancy when your body tends to clot more anyway. She may have to take some anti clotting drugs during surgery in the future. Hank just happened to mention that his family has a clotting disorder the day I found this out. How in the world have we been married for 17 years, been through countless surgeries, worrying sick about her possibly having a blood clot in her brain, and he forgets this small detail? Not surprising really that's why I can't hardly stand for him to take the kids to the doctor...his lack of communication both ways drives me NUTS! I love him anyway:) Let's not get started on what I do that drives him NUTS!!! Ok-so- doc says she had an overwhelming amount of infection from ticks, strep and abscess that her body created an autoimmune response which caused her own antibodies to turn on her body. While this was going on her body did not properly absorb the spinal fluid. Once she had megadoses of IV antibiotics, and we started her on diamox, things started returning to normal. This is a very slow process that can take up to 6 months to regulate. That is why she still has some bouts of headache and vomiting. Although improving greatly:) He said her opening pressure was pretty high and she's lucky she didn't have to have surgery to put slits in her optic nerve to release pressure. Many kids in the 30's have to. Maybe she should have and it would have saved vision? Many kids in the 40's have to have shunts put in their brains. NO THANKS! Dr. Roach is a pioneer in this field and there is much he is still learning about pseudotumor. He said that she needs to stay on meds til mid July then wean off and go back to Ohio first week of August so they can see how she looks off of the medication. They call her type transient pseudotumor (which is a term they want to add as a medical condition) which is where a person has an isolated occurance and it's not a chronic condition. She has a 95% chance of it NEVER returning. His theory about her antibodies is one he's tested. He had a very sick girl in ICU who was having trouble breathing, etc. He gave her immunoglobulin therapy and it totally reversed her condition within 24 hours. That is why he feels confident about Stella's episode being transient. Dr. Roach told us there are many things he thought he knew about this rare condition (including that fact that it may not be so rare) are not true. I'm so thankful he is pushing forward with research at an age when most people retire. He spent almost 3 hours talking to us and was so nice. I feel like we are in good hands between our doctors here and doctors in Ohio.