Our trip to the ghetto...

Many of you know that we have been preparing to take our youngest daughter to Denver to see a different neurologist and to have surgery performed for her cranial synostosis. Here is an update. The long version...

Cranial Synostosis: all the plates in the skull have closed too early and the brain has pressure on it from not having room to grow - side effects: brain damage, loss of physical and mental functions of the body, death.

We drove down to Denver and stayed at a very scary motel on the ghetto side. That's what you get when you don't know your way around and you arrive at midnight.

We got up in the morning and drove around until we were lost and accidentally found the Ronald McDonald house - which was our end destination but we were looking for restaurants. We went in to ask directions and they immediately sent us upstairs for breakfast and checked us in. I've stayed at many hotels in my travels and I can say for certain we were treated like royalty and I definitely give the Ronald McDonald House a 5 star rating.

We then went to meet the Neurosurgeon for her physical and to look over tests. Valorie and I played on the outside courtyard on the 5th floor. It was a bright sunny day and the high was in the 80's! Imagine that! Denver in November!

The neurosurgeon gave us good news - bad news. The good news is that she did not want to do surgery. The bad news is that the surgery would be too risky. They would have to take the entire front end off and re sculpt it but would not do that until they had a better MRI of the brain. They needed to know if the brain was under any pressure. Basically - Valorie's head grew out the front very fast and allowed the brain to move to the front also. They tried to schedule us for the tests but the appointment was 2 weeks out. So we returned home. We do not have any answers. Just more questions.

I feel angry at the Neurosurgeon in Rapid City who was going to perform surgery on her - he would have slaughtered her! He isn't even a certified pediatrics neurosurgeon - We found out that there is less than 300 pediatric neurosurgeons in the World? United States? But the point is - he wasn't qualified. And as far as I know he is still not practicing again. - I'm wondering if he is not in trouble for something else. Do we press charges? Report him to the better health and bureau? Not even to mention that he played with our emotions.

So would I do it all over again? Yeah. I would. Even if we had normal insurance - it wouldn't cover all the costs. Even if we purchased more insurance - there would be an existing clause. Losing our income to be eligible for state assistance was our only option. No one would see us without insurance. Without my income we fell behind on all our payments. We have lost everything and we hung on to the house by our fingernails. So what Good has become of all of this??

We have Valorie in good hands. Excellent hands. We do not have daycare in our home. I have spent more time with my own kids in the past two months than I have all summer. I can stay at home and tend to my own life - my family and even start giving back to my friends, family and church.

So yeah, there is a lot of good that has come from this. Time to catch our breath and gear up for whatever comes next. We may have to wait for surgery. Or it may be urgent to get it done right away. We don't know yet. Only time and more tests will tell.

7 comments:

Scrappy Girl said...

Wow...what an adventure. I hope you find out things soon and that it works well and she mends quickly.

Jami said...

You amaze me, girlfriend. Thank you for being my friend.

Jess said...

That is so scary.. THank goodness you guys wanted to get another opinion and didnt let him do the surgery!!!

And tho you still have questions.... at least you have some answers. Big hugs, and prayers your way!

Anne Bradshaw said...

Found your blog on LDS Blogs and love that music. So catchy. I'm toe-tapping.

Hope your daughter is doing okay. Sounds so traumatic.

Becka Babe said...

I'm so happy that you see the blessings through all the stress. I'm actually envious of the time you have w/ the kids, wish I didn't have daycare either.

You know were all praying for baby Val, We'll just include in that prayer that her doctors make the right decisions.
Love you!

tammy said...

What a roller coaster you have been on. I'm glad you can see the blessings in all of this. I have another friend who has been going through some of the same things only with her husband. She is sure he wouldn't have gotten the heart surgery he needed had he not lost his job and insurance and been forced to see a different doctor.

I hope things go well for you family and sweet daughter.

Cynthia said...

I've been thinking about you this whole month. I am so sorry you don't have any answers yet. You'd think they'd have made a way for you all to get the tests done while you were out there! GRRR!

I am so sorry for all your family is going through but so impressed that you would do ANYTHING asked of you to get your child the care she needs and deserves. You are a Warrior Mama. I am so proud of you!