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.
The little monsters
Introducing...
Valorie as Super Girl
Jonathon as Woody
Sarah as the purple witch
(trying really hard to make a scary face)
Alta as the green witch
(love the lip!)
The little monsters!
Valorie as Super Girl
Jonathon as Woody
Sarah as the purple witch
(trying really hard to make a scary face)
Alta as the green witch
(love the lip!)
The little monsters!
The MEANEST MOMMY in the world!
It's Halloween and I am going to THROW AWAY all my children's Halloween candy.....except the chocolate ones.
Now before you burn me on the witches stake hear me out...
If it doesn't have chocolate in the candy it's just sugar right? So I'm letting them keep anything with chocolate in it.
Second...have you heard of anyone getting cavaties from eating chocolate? It's been said that there is nutritional value and mentally well being from eating chocolate!
Just kidding... We are cutting back on the amount of CRAP the kids are eating this holiday and that's how we decided to divide and conquer. That and we are trying not to let anyone get sick between now and baby Valories surgery.
We have had yet another change of plans. Our neurosurgeon canceled the surgery for a family crisis. His secretary said she had no idea when we could reschedule.
Rather than wait around we found someone else. Good thing we did. We are now going to Denver CO to see one of the best Chief of Neurosurgery. She is amazing. Not only do we have our initial appointment with her but surgery scheduled as well.
We will be at the St Lukes Presbyterian hospital and will most likely be able to stay at the Ronald McDonald house half a block from the hospital.
I will post after the surgery and let you know how it goes. I can't describe in words how amazingly blessed we feel.
The end...almost
I quit my job. Lost more than half our income. BUT! We now have our children on State Assistance and FINALLY got baby Valorie her surgery scheduled. We had to file bankruptcy. We are losing everything except the house. Well...maybe even the house. We are 3 payments behind and we got the forclosure notice in the mail. But it's not over yet. Surgery is the 27th. I am hopeful that everything is going to go smoothly. We have each other and that is all we need. And a nap...
We have been so blessed. I have felt so comforted and loved and sustained through all of this. Prayer, Scripture and going to church has kept our minds clear and has given us peace. I know my Heavenly Father loves each one of us. I know that Jesus gave his life for us.
I think of our bankruptcy. We don't deserve not to pay our debt. But under the circumstances here we are. We have been wiped clean of our debt and our credit.
It made me think of what Jesus has done for each one of us. I do not deserve to have my sins forgiven but it is by His grace that I can repent and be forgiven. Grace and Mercy. I have a new understanding.
I have been given the gift of time. I am spending it on my family. Every last drop of it.
We have been so blessed. I have felt so comforted and loved and sustained through all of this. Prayer, Scripture and going to church has kept our minds clear and has given us peace. I know my Heavenly Father loves each one of us. I know that Jesus gave his life for us.
I think of our bankruptcy. We don't deserve not to pay our debt. But under the circumstances here we are. We have been wiped clean of our debt and our credit.
It made me think of what Jesus has done for each one of us. I do not deserve to have my sins forgiven but it is by His grace that I can repent and be forgiven. Grace and Mercy. I have a new understanding.
I have been given the gift of time. I am spending it on my family. Every last drop of it.
NIE NIE
I NEVER EVER watch oprah BUT tomorrow Im gonna, CAUSE......
NIE NIE is going to be on it! I love her so much - she has been an inspiration to me in so many ways.
So tune in to oprah tomorrow Wed Oct 7th
NIE NIE is going to be on it! I love her so much - she has been an inspiration to me in so many ways.
So tune in to oprah tomorrow Wed Oct 7th
MISSING LAPTOP: WRIGHT, Aug. 21
Remembering Jenny
whose heart was two sizes too small
You made everyone feel welcome and wanted...
I miss you, miss you, miss you
whose heart was two sizes too small
You made everyone feel welcome and wanted...
I miss you, miss you, miss you
We've been to see a neurosurgeon and he charged us $400 to tell us that we need more tests done. We are going to have the tests done but we won't return to him if anything needs done.
He did not ask any questions. He did not look at our films we brought him. He basically sat there with his arms crossed against his chest and said I dont know, could be possible and shrugged his shoulders.
We drove 3 hours. Waited in the office for 30 minutes. Waited in the room for another 30 minutes. Spent 2 minutes of his time.
I must be in the wrong business. $400 for 2 minutes??????
We have a new member of the family. A black lab/collie and she is a cutie. Very calm and mild mannered and already is in training.
EXCEPT for the fact that Darrel is allergic to her and she will have to stay outside if I want to keep her. We named her Dana.
I will have pictures later which is more exciting than this post.
The kids still have 2 more weeks before school starts. Going to try to make the most of it.
He did not ask any questions. He did not look at our films we brought him. He basically sat there with his arms crossed against his chest and said I dont know, could be possible and shrugged his shoulders.
We drove 3 hours. Waited in the office for 30 minutes. Waited in the room for another 30 minutes. Spent 2 minutes of his time.
I must be in the wrong business. $400 for 2 minutes??????
We have a new member of the family. A black lab/collie and she is a cutie. Very calm and mild mannered and already is in training.
EXCEPT for the fact that Darrel is allergic to her and she will have to stay outside if I want to keep her. We named her Dana.
I will have pictures later which is more exciting than this post.
The kids still have 2 more weeks before school starts. Going to try to make the most of it.
The end and a new beginning
We had our garage sale a week early. Whew. We made more money than I thought and I am really surprised that we sold as much as we did. We will do it again this Saturday and try to get rid of the rest of it.
I thought I was fine with it and I was until I woke up early Sunday morning feeling like I had been hit by a semi truck. I had a mini melt down. But Im fine again. In fact I don't even want to bring any of the leftovers back in. Just want to be finished.
The daycare is losing its numbers and pretty soon we will be officially closed. Two girls go back to school. 2 foster children are being moved to another set of relatives and 2 more children are going to live with their mother in Idaho. Normally I'd be panicked about so many kids leaving all at once but it's as if a divine intervention has taken place. My promptings about selling the toys has lead us to this door and it opened as soon as I heeded the little voice whispering in my ear.
The past year or so I have been distracted by blogging and facebook and then Farmtown... but I really need to get back to the basics and focus on my little family. My goal was to be completely out of debt and have a chunk of savings and retirement aside but none of that seems to matter anymore. Time flies by so fast.
I am focused on what needs to be done to get Valorie her surgery and then on spending quality time with my kids. I've been given a new lease on life and someone took the rose colored glasses and tossed them. I have so much to do with my kids. How can I distract myself from them any longer? I'm just glad that I am not too late.
We drove up to the Big Horn Mountains last Sunday and it was beautiful. Our children told us silly stories and we enjoyed each others company. I believe that God will direct us in our lives. I believe there is purpose and power in prayer. I believe this world is just a short pitstop in a grand journey. I'm trying not to get too side tracked or distracted.
We'll keep you updated on our progress. :)
I thought I was fine with it and I was until I woke up early Sunday morning feeling like I had been hit by a semi truck. I had a mini melt down. But Im fine again. In fact I don't even want to bring any of the leftovers back in. Just want to be finished.
The daycare is losing its numbers and pretty soon we will be officially closed. Two girls go back to school. 2 foster children are being moved to another set of relatives and 2 more children are going to live with their mother in Idaho. Normally I'd be panicked about so many kids leaving all at once but it's as if a divine intervention has taken place. My promptings about selling the toys has lead us to this door and it opened as soon as I heeded the little voice whispering in my ear.
The past year or so I have been distracted by blogging and facebook and then Farmtown... but I really need to get back to the basics and focus on my little family. My goal was to be completely out of debt and have a chunk of savings and retirement aside but none of that seems to matter anymore. Time flies by so fast.
I am focused on what needs to be done to get Valorie her surgery and then on spending quality time with my kids. I've been given a new lease on life and someone took the rose colored glasses and tossed them. I have so much to do with my kids. How can I distract myself from them any longer? I'm just glad that I am not too late.
We drove up to the Big Horn Mountains last Sunday and it was beautiful. Our children told us silly stories and we enjoyed each others company. I believe that God will direct us in our lives. I believe there is purpose and power in prayer. I believe this world is just a short pitstop in a grand journey. I'm trying not to get too side tracked or distracted.
We'll keep you updated on our progress. :)
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