Monday, March 31, 2008
Working through the health insurance information for Gavin is well . . . a nightmare. We actually are VERY fortunate and have coverage by two insurance companies, but keeping things in order is overwhelming. My little multi-million dollar baby has left quite a mark in our family filing cabinet! I can't even begin to explain the paperwork we are still receiving for his medical treatment. My expando-folder can't expand any more!
The frustrating thing is that it's hard to move on financially (emotionally is a whole other topic) when you are waiting for the other shoe to drop. I have called both insurance companies multiple times asking about claims processed, claims denied and claims pending. I can't get a clear answer on what will or won't be covered. I feel like there will never be an end! It's hard to sit back and wait for the bills to come in. Will we have bills? Will we get lucky and have his costs covered mainly by insurance? Or (as I often worry) in one, two or three years will the final bills come rolling in? UGH . . . it's just the anxious part of me that wants to know the end of the insurance story. I know there are many of you who have had to deal with this as well. Any suggestions?
Friday, March 28, 2008
Thursday, March 27, 2008
I hope this isn't too negative, but we wonder these things because we sometimes feel a little cheated of earthly-parent experiences. Even with feeling cheated, we do know that we truly have some amazing blessings as well. Blessings that we can't even comprehend at this point in our lives. And because I am starting to understand the bigger picture I wonder other things too . . .
. . . what is Gavin doing today? Is he running and playing with other little boys and girls in heaven? Is he showing and teaching people about the truly important things in life? Is he helping fulfill a greater cause than we can understand here? Is he watching over us? Does he know that we are so grateful we had three months with him? Does he know that his sweet pictures still make us laugh? Does he know we love him and miss him? Is he counting the days to be together again like I am?
Just a few things I wonder about on days like today . . .
Monday, March 24, 2008
Sunday, March 23, 2008
My family had a nice time visiting with each other and spending a little time with Gavy.
Uncle James, Uncle Matt and Daddy visting with Gavin.
Friday, March 21, 2008
Thursday, March 20, 2008
Wednesday, March 19, 2008
Tuesday, March 18, 2008
Nothing like daddy's hands hard at work!
Doesn't the box look beautiful?
We put the letter G on the front of the box to give it a little "personality." :)
Monday, March 17, 2008
Sunday, March 16, 2008
Friday, March 14, 2008
Wednesday, March 12, 2008
Tuesday, March 11, 2008
Monday, March 10, 2008
I just have to share a book with all of you. Shortly after Jason and I came home from Salt Lake City in October, one of my friends brought over the book The Sunflower by Richard Paul Evans. I feel so bad it has taken me so long to read it - but I thought it was a perfect opportunity to spend the weekend reading since Jason was gone for a few days visiting his family. Saturday afternoon I ran all of my errands and then sat down to read and never put the book down. It was such a simple but amazing novel about what is truly important in life. I don't want to give away the book for those of you who may want to read it - but the story takes place at an orphanage in Peru where an American doctor has taken in some of the street children who have been abandoned or sold by their parents. It's such a beautifully written true story which has once again opened my eyes to the truly important things in life. I know I talk about this all of the time, but reading this book made me ashamed of the things that I continue to preoccupy my worries and time with. There is a quote in the book from the Dr's journal which says, "American culture is a curious thing. We fret over a sport's star's twisted ankle or the ill-fated marriage of celebrities, yet lose no sleep over a hundred million children living in the streets."
Just think about it for a second - I did. What are you preoccupied with right now? What are your biggest worries? What are you so consumed with? I'll go out on a limb and tell you what I worry and think about the most . . . MYSELF. Isn't it true? Maybe you don't do that, maybe it's just me . . . but how often do we find ourselves thinking and consumed with what we don't have and how much we want it. Are we really justified in thinking we NEED a new car, a boat, or brand name clothes when there are literally millions of children living and starving on the streets? For me this defines necessity. I am embarrassed that I am so consumed with myself, my grief and the materialistic aspects of life that I consider to be important. If I put half of that energy into serving others or helping those that are really in need . . . I may be able to make a difference for someone else.
Too often I find myself heartbroken, preoccupied or sad with some of the cards life has dealt to our little family. There was another quote in the book that really hit home for me. "We carry around in our heads these pictures of what our lives are supposed to look like, painted by the brush of our intentions. It's the great, deep secret of humanity that in the end none of our lives look the way we thought they would. As much as we wish to believe otherwise, most of life is a reaction to circumstance."
I know this post is kinda a rant . . . I didn't intend for it to be that way. Sorry. I actually just wanted it to be a book review. I should be actively trying to make another person's life better - not so utterly consumed with the things I want.
Saturday, March 8, 2008
She spoke with Dr. Rope at PCMC who is the doctor that worked with Gavin while he was alive. Dr. Opitz was the geneticist at the autopsy. Well, because of the negative CHG array test they are back to thinking Gavin might possibly have had CHARGE. However, the CHARGE test came back negative as well. About 40% of the children diagnosed with CHARGE have no genetic showings; meaning that their CHARGE tests came back negative as well. They just receive a clinical diagnosis and assume that's what their syndrome is. They are really thinking this could be the case with Gavin since they still can't find anything genetically wrong through these tests. We know that he had some type of syndrome, but the mutation must have been so small and isolated that it cannot be located. But - CHARGE is a syndrome de novo, meaning that we don't have an increased chance of having another child with CHARGE - if that's what this is.
I asked the geneticist if they ever encounter this . . . children without a confirmed diagnosis. She said, "All of the time." I then asked her what they tell parents to do about future children if they can't ever identify the genetic mutation. She told me that almost all of the time these parents go on to have children that are 100% healthy.
The geneticist here is still working so diligently. She told me to call back at the end of this week. She is still conversing with the PCMC geneticists, but we should have a better idea of their thoughts towards the end of the week. She told me that even if we get pregnant and have a healthy child they will still continue to work on Gavin's case until we say stop.
We are VERY encouraged to receive this news . . . but we are once again being cautiously optimistic. That seems to be our motto for this phase of our lives. We are so grateful for all of the prayers and thoughts on our behalf. We know the Lord truly knows our hearts and our righteous desire to be parents. How grateful I am to have the knowledge that I can turn to the Lord and receive direct inspiration. Having another child without a diagnosis for Gavin will be a huge leap of faith . . . but I feel that through this process we are getting closer to being parents again. YEAH!
Friday, March 7, 2008
Thursday, March 6, 2008
Wednesday, March 5, 2008
Q: Have we gotten any results back yet?
Well, as of right now, we still don't have any results. In fact, we still don't have a lab to do our tests yet. I am THE WORLD'S most impatient person and I called the geneticist last week to see if she had any news. As of last week, she had JUST received Gavin's medical records from the hosptials and was going through them with "a fine tooth comb." Since Gavin had oodles of medical records from his three months in the NICU - they had to copy and mail the records and well, that just took a few extra days. Our doctor is SO nice though, and I just can't complain about her being ultra-specific while reading his records.
Q: So, did Gavin have a syndrome, or not?
That's a freaking great question. Yes. Gavin had some type of syndrome. It's just that we don't know what syndrome he had. He did not have an IDENTIFIABLE syndrome, but he did have some anomalie or mutation within his genes. According to the geneticist at PCMC, "Everything is genetic. Good or bad."
Q: So what are they looking for?
The problem with Gavin was that he didn't fit the criteria for any specific syndrome. However, he did have many characteristics in a class of syndromes called Otopalatodigital and this is what we are testing for right now. I know it's bad to do your own research, but as I read about it online I found that he really does fit a lot of the criteria. Within this cluster of syndromes there are four or five different specific syndromes. Some of them have only been diagnosed a few times . . . EVER, but they know exactly what tests they need to run to look for this family of syndromes. The sad thing is that if this is what Gavin had . . . there is a chance that it's hereditary and our future children will have it too.
Q: How do you get an Otopalatodigital syndrome?
OK - I'll try to explain this the best way I can . . .
1) It could be a syndrome de novo which means that for some random reason that specific gene in Gavin mutated during his development. The chance of having a child like this is the same for every mother. Nothing could have been done to prevent or predict this. I guess we could consider this a freak accident (but I would never call Gavin that - he was this way for a purpose)
2) It could be an X linked problem. I'll try to be as brief as I can, so here it goes . . . Every woman has a XX sex chromosome and every man has a XY sex chromosome. When a baby boy is conceived the mother passes on an X and the father passes on a Y. Well, if I have a mutated X gene and pass that on to my son . . . he will have that mutation as well. So, why doesn't the mutation present in the mother? Since the mother has 2 Xs the one that is normal can compensate for the X that is mutated. Therefore, as a woman you can be a carrier but not have the syndrome. If this is the case and I have this specific mutation to cause an Otopalatodigital syndrome all of my children will have it, but it will always be lethal in my boys because their Y can't compensate for the X that is mutated. Yeah, I know I just babbled . . .
Q: Do you think it will happen again?
My gut used to tell me that this was just Gavin and that this wouldn't happen again. But with all of these new possibilities and syndromes we are looking into, I am just not so sure anymore. We don't know that he had an Otopalatodigital syndrome . . . but so many issues these children deal with sound a lot like Gavin. And there isn't a little boy with this syndrome that has lived past a year old. This makes it a very real and critical decision. I just can't say I feel one way or another about the chances yet. I think I just need a little more information first.
Q: What happens if the tests come back negative for Otopalatodigital? What do you do then?
Another great question . . . and we ask each other that all of the time. Yes, we think we may be headed down the correct path with this "lead", but what do we do if this syndrome isn't the diagnosis either? I guess that means we have to try something else and start this process all over again. The thing about genetics is that you can dig and dig forever and still not find an answer. It is a lengthy process, but it's a necessary process as well. We are just praying that we find some type of answer.
So, there you go. I know there really isn't any answers to give yet but at least we have a direction. Maybe it will turn out, maybe it won't. The important thing is that through this process we depend on each other, our families, friends and the Lord. I am sure that someday we will know - it just may take awhile. Ugh! More patience!
Tuesday, March 4, 2008
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.