Welcome to our crazy life!

For years friends and family have told me to write a book about some of the wild, funny, challenging and (at times) unbelieveable events in my family's life. I decided a blog would be a good way to get my feet wet...so here goes! I was NOT an English major so don't critique.

Tuesday, June 14, 2011

this is what i picture it being like when we go to Heaven....a little window opens right up for us and there is an amazing light behind it:)

as the storm rolled in this evening I snapped a few pictures of the awesome clouds...

Sunday, June 12, 2011

Hank's face tells the whole story. Stella was the photog. while I drove the boat.



I love this picture (above) because everyone is doing their own thing and paying no attention to the camera. Love pictures like this. Either Stella was telling on Hank for not looking straight ahead or he was about to have a head on collision??? The rest of us were clueless.

Warning: You will probably be sick of lake pictures by the end of the summer, but we have so much darn fun there!
Lake Patrol - be on the alert for a middle aged man with white shiny skin ( has very little boat driving experience) who is taking pictures of his family while driving the boat.

Tuesday, June 7, 2011


this one is my favorite of T.J.'s legs....(above)



Lake season has officially arrived and we were there to ring it in today! Crazy boys...they beg me to sling them around, toss them off and do figure 8's til their hands bleed - literaly!

Friday, June 3, 2011


Shelby had her recital last night and she did GREAT!
The theme was a night at the movies and her class did We Go Together from Grease, a ballet from Alice In Wonderland and Jailhouse Rock for tap. Very cute recital - as always. Miss Jennifer does an excellent job! Doncha love Shelby's eye candy? Can you see it?

Wednesday, June 1, 2011

Sunday evening, as soon as our plane landed, we drove to the Wagoner cemetery where Hank's family held a memorial service for his dad who died 1 year ago May 29th. This was the first time Hank has been to the cemetery since the funeral. He doesn't like to deal with emotion so he avoided it, but once we got there it wasn't as bad as he thought it would be. He had totally psyched himself out about it. Wanda said the same thing. Anticipating the one year anniversary was worse than the anniversary itself. The get together was nice. People took turns talking about Darrell and ways they remember him.

Hank's birthday dinner in our rental car...how sad! We were trying to make it to a movie.

lots of sitting and waiting:(


I have never seen a person who likes potatoes more than Stella. She dips french fries into her baked potato.

it's also the first time I have EVER seen Hank play a game on an electronic device - EVER!

Stella slept a lot on the plane - thank goodness! In a way this trip was relaxing for Hank and I because we never get this much time to talk and hang out.

More pics from OHIO - that is bad weather...solid clouds.

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.


On our way into see the doctors and I was feeling very anxious about what they were going to tell us.

Stella is the tiny speck of pink standing in front of that car...get your magnifying glass
Stella's trip to OHIO to go to Nationwide Children's Hospital