The latest on Ohio and Stella's health...Today our pediatrician spoke, at length, with the head of the Pseudotumor Cerebri clinic at Nationwide Children's Hospital in Columbus, OH. He was just featured on Good Morning America and seems to be the expert on the subject. He wanted me to overnight the CD's with all of her films on them..so I blazed to Tulsa this evening paid $86 to send 2 CD's and blazed back to Bristow. This Dr. wants to further investigate an abnormality in a vein in stella's brain. There is a narrowing and he thinks it might be a blood clot that is either dissolving or growing. Hopefully it's just her variation of normal to have that narrowing, but he said it would explain the whole ear, abscess etc. Even a small clot could back up everything on that side. I didn't think it was on that side, but i'm confused at this point. He wants several things done ASAP...tomorrow she has to have her eyes dialated AGAIN...then have pictures taken of her optic nerve. He pinned her opthamologist down to exactly how bad her papilladema was and he said it has not changed (better or worse) since the hospital and he would call it moderate. Papilladema is swelling of the optic nerve due to increased intracrainial pressure...it bulges. Friday they are doing a field vision test on her. All of this vision stuff is so urgent because the #1 risk of papilladema is blindness, but it starts with loss of perephiral vision and once it goes it's irreversiable. He wants her to be started on Diamox tomorrow which should help with all of this inflamation. We are nervous about putting her on a strong med. with side effects, but it sounds like our only option right now. Only other option is a weekly spinal tap or shunt in the brain. He is also sending orders for blood clotting tests to be done here in Tulsa. This can be done faster here than traveling there so we are starting here. While this is being done he and his colleagues will be looking at her films to see what they think. He wants more MRI, MRA's and MRV's done in the very near future so we can see if this narrowing changes any. If it does and blood tests pos. they will start her on clotting meds. We will be seeing the pediatric opthamologist at least every 10 days for awhile. Dr. Roach in Ohio said he can say with total certainty that her tick illness did not cause her pseudotumor. She probably just developed it. She is not the typical candidate, but medicine is variable. Of course he is going on his first vacation in 20 years starting MONDAY!!! REALLY??? Dr. Sood asked him if he would cancel just this once for Stella. He said his partner would work her in or we can wait til the next week. He said we can fly her - YEAH! I don't know when we will go. I kind of want to see the BEST. We are getting the ball rolling here, taking her there for a full eval. and game plan, then bringing her back here so Dr. Sood can oversee her care. In 6 months if all is going well we will do another tap to check pressure and if it's good start weaning off the Diamox. He said it's more like 6 months for this to resolve if it's an isolated case and not a lifelong condition. So we are waiting to rule out a thrombosis, starting a new med. and looking for clotting disorders. Having school at home and getting very tired of being stuck with needles! It's pretty bad when she says "give me the j-tip," this new numbing stuff they use for blood draws. Yes, I still have 2 other children who are very busy with end of year activities and a husband who hasn't hardly worked so he's making up for lost time now. IF you see either one of us on the street and we are drinking coffee, while taking NO-DOZ, and wearing a caffeine patch, you know why! Thanks for your love, support and prayers. Looks like we still need a little bit more so keep it coming. If you are reading this dissertation, you obviously care a lot about her:)

Today I went to admin. office and signed Stella up for homebound for the remainder of the school year. Her teacher - whom she ADORES - will come to the house and teach her. Stella and I will "play school" too:) Since she was feeling good, and we were out and about, I ran her by the school to say hi to her friends for the first time since she got sick. They were all excited to see her. It was bitter sweet because she is very social and I know she would love to be there every day with them. I will try to take her to special events when I can.

This is what the dog does to dress shoes while left inside all day (because his owner was trying to be nice on a rainy day) so she could take her sick daughter to doctor's apts. in Tulsa.

This is the story of Stella's illness and hospitalization:(

I have tried to make it as reader friendly without boring you with medical details. I had to document this experience with my iphone which is a poor substitute for my Cannon. The day I walked into the hospital I had no idea I would not leave it again for 9 days. I had my family bring a few items, but I wore and washed the same 2 or 3 t-shirts, 2 pairs of pants and don't even get me started on the socks - YUCK! Our friends and family were amazing during this difficult time. The city of Bristow made sure my kids were fed and countless prayers were offered on her and our behalf. I do believe that prayers are answered. I believe that angels (like her grandpa's Darrell and Papa Jack) are there waiting to help answer prayers.

I feel that if I name names feelings may be hurt if I forget someone. You know who you are and I will never forget you!

Scroll down to read the story from beginning to end - here being the end. More to come. Hopefully in a few days we will be in Ohio. I will try to keep this updated. Well wishes

This pretty much sums it up....

The night we got home she told us her head hurt around midnight. We propped her bed up and she made it through the night. Next morning she woke up and said "my head hurts," then threw up. Gave zofran, got throw up bowl and headed to the Dr. Still vomiting in dr office. Dr. Sood looks at me and is thinking exactly what I am - there is no way we can sit and watch her live like this indefinately while this may or may not resolve itself. We made a plan to find the BEST doctor in the world who specializes in pseudotumor and get her in to see him or her. I have to make sure this is really what she has...still wanting to rule out some other serious stuff. Dr. Sood worked aggressively that day and the next to get records, films, etc to the doctors at Nationwide Children's Hospital in Columbus Ohio. They have the first and only dept. devoted to this condition in PEDS. They will call us tomorrow and tell us if they think she is a candidate and when they can work her in. We will have to drive / can't fly bc of intracranial pressure. Not looking forward to a 14 hour car ride (one way) with a sick child, but we will do whatever we have to. Today is the 3rd day she has been headache free so maybe she is getting over it? We will still pursue another opion because this is a condition that can come and go.

Next day (April 27th - Wednesday) went home!

Left the hospital with headache:( By the time we got home feeling better...maybe there is something to keeping her upright....hmmm? Happy to be home and I start cleaning like a crazed maniac. Want her to be in a sterile bubble.