The visit today with Dr. Wrubel went very well! Wesley and I actually got to enjoy eating breakfast together at Einstein's Bagels because we got to the appt. so early. Lucy was a complete angel -- even though she hadn't eaten since 6:30 this morning. She got through the whole appointment without crying and I was able to feed her in the car before we went home.
Another nice thing was being in the waiting room and seeing a lot of other young couples with their babies who have other problems, too. We couldn't tell if any of the other babies had craniosynostosis (I think some of them might have) but everyone just seemed really positive and it helped me to remember again that we're not the only ones going through this.
We met with Dr. Wrubel's physician's assistant first, a really nice young lady. She just asked some preliminary questions and then we met with Dr. Wrubel. There wasn't a lot that we hadn't already talked about with Dr. Mackay. He said he was going to refer us to a pediatric opthamologist because Lucy's eyes are not exactly straight and they can kind of wander or not be looking in the same direction all the time. I asked him about the orbital advancement (the additional procedure where they move the bone around the eye sockets forward to compensate for how far back that part of her face is now). I didn't know how her eyes would look if they just moved the bone forward, but he explained that the lining around the eye sockets is attached to the bone so when they move the bone forward, the eye sockets will come along, too. He said that her eyes might look a little "funny" until everything has kind of grown into the right place, but then it should be okay.
I asked him about the possibility of having to go back in and do an additional orbital advancement or having to fill in the bone ... when the surgeons do the orbital advancement, they are making an educated guess about where to place the bone based on the child's facial growth and how they think it should look and where it should be. But I had heard recently from a lot of other parents whose children had that same procedure that almost all of them had to have a second surgery to put in bone or tissue to fill in the gaps where the bone did not grow like the surgeon thought it would. He said that it's about a 10% chance that she'll have to have another total orbital advancement and about 15-20% that they'll just have to go in and do some filling in for more cosmetic reasons. I'm praying it's going to be 0%. :)
He said that her head is really growing up a lot (he called it "towering"), and if that continues then they may have to reshape the back of her head, too, when they do the surgery. And he confirmed that the surgery would take place in November or December. Before we left, we met with his surgery scheduler and she asked us if we had any particular date that we wanted, or that we wanted to avoid (especially since it will be the holiday season!). We just told her the sooner the better! So if we're unavailable for Thanksgiving or Christmas this year, I'm sure everyone will understand why. :)
We probably won't see either doctor again until right before the surgery date, unless there is a reason for us to. I'll try to update this blog every month just with how things are progressing and add pictures of Lucy as she grows ... so everyone can be updated and for us to have a record of how she has changed.
Thank you to everyone who continues to support us, pray for us, send us sweet messages and encouraging Scriptures. You will never know how much it strengthens my heart and Wesley's heart to know that we're not doing this alone and that so many people care about us and about our treasure, Lucy. God is very powerful and His word never returns void, so we just continue to pray Scripture over her and we believe it to be true!
Monday, June 28, 2010
Friday, June 4, 2010
First visit with Dr. Mackay
Today was our follow up visit with Dr. Gregory Mackay, who does the reconstruction part of the surgery for Lucy's condition. We got there in plenty of time but we ended up having to wait for at least 40 minutes to see him. Why do doctors make you wait so long? I would even be okay if they were honest and said, "It's going to be 40 minutes before we can get you back there" because I would know that I had time to nurse her or change her diaper or whatever. Instead they leave you hanging and then you never know when they might come a'callin'. Oh well. That is totally unrelated to the visit and totally related to my pet peeves.
Dr. Mackay's PA saw us first and she took some pictures of Lucy's head from all different angles. Then Dr. Mackay came in and just talked to us for a while. He basically said what we already knew -- that the surgery would take place anywhere from 9-11 months old. He said they waited because the later they wait to do the surgery the less chance that she would have to have another surgery again. He was glad to hear that her genetic tests came back normal. What I think is a huge praise to God's healing in Lucy already is that he said she has a lot of midfacial retrusion and bicoronal craniosynostosis, both which are usually associated with a syndrome of some kind. But he said they can both also happen randomly, too, and it appears that in Lucy's case those two things are random (assuming the genetic test results are valid, and I am assuming they are!). But it just makes me really glad to know that she has two things that normally go along with another kind of syndrome, but she doesn't have a syndrome.
But because of the midfacial retrusion the surgery will be just a little bit more extensive than a normal craniosynostosis surgery. They will actually have to take the bone around her eye sockets and move it forward so it can match the growth of her forehead. He said he would almost overcompensate when he places the bone so for a while it will look funny until the rest of her face catches up with where it's supposed to be. But he said that it was pretty common to have to do that. He said she might have to have another surgery around her eyes when she is 7-9 years old, but that sure is a lot of time to pray and for God to answer our prayers that she won't have to have another surgery.
So the encouraging thing is that he was very reassuring -- he's been doing this since 1995, and he said he's never ever had a complication -- and he showed me a bunch of pictures of kids that he has done surgery on and they all look completely normal and you would never be able to tell they ever had anything wrong. He said that we would set a date soon for the surgery and it would probably be sometime in November or December unless Dr. Wrubel (the neurosurgeon) thought it wise to do it earlier based on her brain growth or swelling, etc. The part that's hard is that the surgery is a little more extensive and she might not look completely "normal" for a little while longer than we thought. Also, he made it sound like they would do the surgery and then it would be a lot of "wait and see" -- waiting to see how the bones in her skull fuse on their own, and if they don't they have to go back in and basically put in some artificial bone ... waiting to see if her head will conform to the shape they want it to be and if it doesn't they will have to go back in and do more surgery. So there are a lot of what if's, but I believe in a God that is in control of all the what if's and I trust that if He can form the entire world, He can certainly mold my baby's head to the correct shape (and even unfuse the sutures still if that is what He desires!).
Wesley was able to go with me and it was really nice to have him there, both emotionally and logistically (he can help carry all the stuff ... haha). I'm so glad I have such a strong and loving husband, not only just to go through life with but to go through trials with.
I'll end this post by saying that I've been reading a lot of blogs lately of other families whose children have conditions that are much more serious than anything Lucy has, and it has given me such a new outlook on my attitude. Yes, finding out that Lucy had craniosynostosis was a huge shock and it was emotional and hard and there are lots of emotions that I share in common with these other moms whose stories I am reading. But Lucy can have surgery and then it will be almost as though nothing was ever wrong. These other families are facing much more painful decisions -- like if their child will make it to her first birthday. It's amazing when I pray for them that my own problems pale in comparison and I am grateful for the smallest things that I have. It's also amazing to see their strength and humor and faith in the midst of these trials.
I joined a women's summer Bible study and it is going to be on the book of James. I started reading the first chapter to get prepared and this verse stood out to me and I will end this post with it:
"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." -- James 1:2-4, The Message
Dr. Mackay's PA saw us first and she took some pictures of Lucy's head from all different angles. Then Dr. Mackay came in and just talked to us for a while. He basically said what we already knew -- that the surgery would take place anywhere from 9-11 months old. He said they waited because the later they wait to do the surgery the less chance that she would have to have another surgery again. He was glad to hear that her genetic tests came back normal. What I think is a huge praise to God's healing in Lucy already is that he said she has a lot of midfacial retrusion and bicoronal craniosynostosis, both which are usually associated with a syndrome of some kind. But he said they can both also happen randomly, too, and it appears that in Lucy's case those two things are random (assuming the genetic test results are valid, and I am assuming they are!). But it just makes me really glad to know that she has two things that normally go along with another kind of syndrome, but she doesn't have a syndrome.
But because of the midfacial retrusion the surgery will be just a little bit more extensive than a normal craniosynostosis surgery. They will actually have to take the bone around her eye sockets and move it forward so it can match the growth of her forehead. He said he would almost overcompensate when he places the bone so for a while it will look funny until the rest of her face catches up with where it's supposed to be. But he said that it was pretty common to have to do that. He said she might have to have another surgery around her eyes when she is 7-9 years old, but that sure is a lot of time to pray and for God to answer our prayers that she won't have to have another surgery.
So the encouraging thing is that he was very reassuring -- he's been doing this since 1995, and he said he's never ever had a complication -- and he showed me a bunch of pictures of kids that he has done surgery on and they all look completely normal and you would never be able to tell they ever had anything wrong. He said that we would set a date soon for the surgery and it would probably be sometime in November or December unless Dr. Wrubel (the neurosurgeon) thought it wise to do it earlier based on her brain growth or swelling, etc. The part that's hard is that the surgery is a little more extensive and she might not look completely "normal" for a little while longer than we thought. Also, he made it sound like they would do the surgery and then it would be a lot of "wait and see" -- waiting to see how the bones in her skull fuse on their own, and if they don't they have to go back in and basically put in some artificial bone ... waiting to see if her head will conform to the shape they want it to be and if it doesn't they will have to go back in and do more surgery. So there are a lot of what if's, but I believe in a God that is in control of all the what if's and I trust that if He can form the entire world, He can certainly mold my baby's head to the correct shape (and even unfuse the sutures still if that is what He desires!).
Wesley was able to go with me and it was really nice to have him there, both emotionally and logistically (he can help carry all the stuff ... haha). I'm so glad I have such a strong and loving husband, not only just to go through life with but to go through trials with.
I'll end this post by saying that I've been reading a lot of blogs lately of other families whose children have conditions that are much more serious than anything Lucy has, and it has given me such a new outlook on my attitude. Yes, finding out that Lucy had craniosynostosis was a huge shock and it was emotional and hard and there are lots of emotions that I share in common with these other moms whose stories I am reading. But Lucy can have surgery and then it will be almost as though nothing was ever wrong. These other families are facing much more painful decisions -- like if their child will make it to her first birthday. It's amazing when I pray for them that my own problems pale in comparison and I am grateful for the smallest things that I have. It's also amazing to see their strength and humor and faith in the midst of these trials.
I joined a women's summer Bible study and it is going to be on the book of James. I started reading the first chapter to get prepared and this verse stood out to me and I will end this post with it:
"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way." -- James 1:2-4, The Message
Tuesday, June 1, 2010
Great news!
I finally heard back from the geneticist today. This was after I left her three messages asking for our test results that were due. I guess it pays to be persistent sometimes.
They just tested her blood for mutations in the FGFR2 gene. Here's a little bit about that from Wikipedia (not that I get my medical information from Wiki, but you know it's helpful sometimes):
"Fibroblast growth factor receptor 2 (FGFR2) is a receptor for fibroblast growth factor encoded on a gene residing on chromosome 10. Mutations in this gene are associated with Crouzon syndrome, Pfeiffer syndrome, Craniosynostosis, Apert syndrome, Jackson-Weiss syndrome, Beare-Stevenson cutis gyrata syndrome, Saethre-Chotzen syndrome, and syndromic craniosynostosis."
Like I said previously, they were concerned that her craniosynostosis might be a result of a genetic mutation since we do have another family member who had it. But everyone in the hospital was pretty confident, just based on the way she looked and the lack of any other obvious symptoms, that there was no genetic mutation.
So, the geneticist finally called me back today (on the way to the mall!) and she said that the test results came back and they are normal!!!!! It wasn't a big shock to me, really, but it was comforting to know just the same.
She said that we can schedule an appointment and they can decide then what other tests they want to run, if we want them to. But Wesley and I both agree that there's really no need to run any more genetic tests. We're pretty sure that nothing else is wrong with her and it makes us feel better that doctors said the same thing. I don't want to put her through any unnecessary poking with needles if we don't have any suspicions.
That's great news!
They just tested her blood for mutations in the FGFR2 gene. Here's a little bit about that from Wikipedia (not that I get my medical information from Wiki, but you know it's helpful sometimes):
"Fibroblast growth factor receptor 2 (FGFR2) is a receptor for fibroblast growth factor encoded on a gene residing on chromosome 10. Mutations in this gene are associated with Crouzon syndrome, Pfeiffer syndrome, Craniosynostosis, Apert syndrome, Jackson-Weiss syndrome, Beare-Stevenson cutis gyrata syndrome, Saethre-Chotzen syndrome, and syndromic craniosynostosis."
Like I said previously, they were concerned that her craniosynostosis might be a result of a genetic mutation since we do have another family member who had it. But everyone in the hospital was pretty confident, just based on the way she looked and the lack of any other obvious symptoms, that there was no genetic mutation.
So, the geneticist finally called me back today (on the way to the mall!) and she said that the test results came back and they are normal!!!!! It wasn't a big shock to me, really, but it was comforting to know just the same.
She said that we can schedule an appointment and they can decide then what other tests they want to run, if we want them to. But Wesley and I both agree that there's really no need to run any more genetic tests. We're pretty sure that nothing else is wrong with her and it makes us feel better that doctors said the same thing. I don't want to put her through any unnecessary poking with needles if we don't have any suspicions.
That's great news!
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