Hogle Zoo

This Saturday we went to the Hogle Zoo with the Skinner family. We met at 9am and stayed until lunch. It was the perfect amount of time to see the animals and get Josh tired from pushing me in a wheel chair up and down all of the hills they have there. We had so much fun.

Colorado

Josh and I flew up to Colorado on Sunday evening, to see the doctor on Monday, Tuesday, and Wednesday. Josh held my hand through the whole thing. We really liked Dr. Oro and everyone in his office. All the girls in the office even thought Josh was funny so you know they were really nice to put up with some of his jokes! So here it is in a nutshell of what we found out...
Dr. Oro does not feel that my leg problem is really caused by the Chiari. He feels that it is Tethered Cord Syndrome. TCS is basically once again I didn't fully develop in my mom and my spinal cord is too tight and doesn't move properly causing a bunch of problems including my legs not always working. And apparently where the doctor feels I have it, it is very rare and almost imposable to see in an MRI. So to fix this I would have to do surgery on my lower back. Now I can't do both surgeries at the same time. And the doctor feels that if we do the lower back first it could cause more problems with the Chiari. So we decided to take care of the Chiari first and, cross your fingers, maybe it will relieve enough pressure off my spinal cord to help it move better. If not he said that within 6 months to a year if my legs are still not working I will need to go in for the lower back surgery. I scheduled the Chiari surgery for August 26. That was the soonest he could get me in. Josh and I will drive up on the 24 so that we can be there for my pre-op on the 25. I've decided to be in a study of there's so I will also have to take a few tests, mostly dealing with my memory or lack of. The surgery will take a few hours, I don't know exactly, they keep saying everyone is different! I will spend 24 hours after surgery in ICU then a few days, if everything goes perfect, in the hospital. So if everything goes as planned with no complications I will spend any where from 5-7 days in the hospital! Then Josh will drive me home. My parents will fly up and be there with us for most of the time, which I'm happy they will, when we got to Colorado on Sunday the first day I started crying and Josh asked me what was wrong and I said I just wanted my mom. He of course laughed at me and said it was a good thing they decided to come for the surgery.
Now I know at first glance this may not all sound like I have the best of luck! But really this is a blessing. I have been diagnosed with all things that CAN be fixed! It just might take a little longer and cost a little more with multiple surgeries, sorry Josh!

Summer Swimming

This last week Josh and I had about 6 families over to my parents house for swimming and a BBQ. We had a lot of fun with all the kids running up the hill to go down the slide. Here are a few pictures of the day...

Hair Cut

Elizabeth's hair has grown so long that it was starting to get really hard to manage, especially with a kid that doesn't want to comb it! So we cut it off.

What Happens When You Fall Asleep With Little Girls Around...

My dad was over the other day and while I was doing some typing for him he fell asleep on the chair. This is what happened while he was asleep. P.S. the girls really got a kick out of playing with their papa, Oh and he slept through the whole thing!

An Answer To A Prayer

For those who know me I am not what you would call...lets just say the picture of health. When Josh proposed to me I gave him, at the time I thought a simple warning that I'm not very healthy and to really think about what it would be like to live with someone that might inconvenience his life. At that point in my life I had been living with Ulceractive Colitis for about 4 years and thought that I have known the worst of it and could handle my lot in life. I was not a stranger to what pain was and could for the most part control the disease by managing what I ate and my stresses. Josh of course pushed aside my advise and told me he loved me. In our 7 years of marriage there has only been ONE complete year that I have not been admitted to a hospital for one reason or another, although there was still doctors visits throughout I don't count those.

About 4 1/2 years ago during my last pregnancy I started having problems with my legs supporting me. For those who have experienced my pregnancies know that they were full of problems. I thought at the time that my leg problem was just another symptom of my pregnancy. The doctor sent me to a neurologist and he ran a few tests and didn't really come up with too much. The leg problem went away about 6 months after Abby was born, but resurfaced a couple of years after. It came on slowly at first. My legs would suddenly give out for a moment and then after resting for a while I could walk again. It steadily got worse and lasted longer, so we decided I should go back to a neurologist about 6 months ago. I had so many tests, the doctor at the beginning started to lean towards MS, after considering a number of other diseases. At that point I no longer cared what it was so much, as long as he just gave me an answer to WHAT was wrong with me. I prayed that I could just have an answer. The struggle of not knowing what is wrong with you and considering that it might all be in your head if they can't tell you, is worse then the pain it's self sometimes. That week I had another MRI. This time it came back with an answer.

I have what is called Chiari type I Malformation (pronounced kee-are-ee). Basically it is thought to be a birth defect in which my skull did not form properly. The bottom portion of my brain is being pushed out the back of my skull and into the top of my spine. This is causing damage to my central nervous system and causing a problem in cerebro spinal fluid flow, which is (from my understanding) the fluid that flows over your brain. This disorder can cause a number of neurological problems. I am a visual person so here is a picture I found to help show:The only way they have found to help it is through surgery. I think for the first few months of knowing this I was so far into denial that I had my own zip code! If it wasn't for my wonderful husband I think I might of just stayed there. I have never seen him more focused and driven on research and finding the best neurosurgeon that could fix me. After weighing all of our options we decided on The Chiari Care Center in Aurora, Colorado.

I thought that after making this big decision that I would just call and be done with it and be on my way to recovery within the same month. I have since learned that my plans do not always go the way I want them to. I waited for 5 weeks and 3 days for them to call me back to make an appointment just for the consultation appointment. Josh is the one that made the call to them. He is the one that got me the soonest appointment he could get out of them. I have a consultation appointment for August 9-11. The surgery will be scheduled after that appointment. I am now figuring that it will not happen until the end of August or in September. My symptoms are steadily getting worse and new ones seem to pop up.

Even though this is not exactly what I thought was going to happen or thought this is how I wanted my prayer to be answered, I am thankful it was answered. And with something that can have an answer. I often tease Josh that his biggest trial in life is being married to me and that if he just took my advise at the beginning that he could of been saved so much trouble. I am thankful that he didn't listen!

Summer Activities

Parade season has come! This is the Lehi parade....

The 4th of July...