You can either fall or learn how to fly. Okay, I'm going to be honest, I may seem like a strong person, but I am a wreck right now. I have had a lot of trouble coming to grips with Dexter's latest diagnosis. I feel like I have to be strong for everyone else and not show how much it affects me. I keep telling myself it's okay to break down, I have every right to (right?). But then I feel selfish and self-centered... so "suck it up, buttercup, and get that smile plastered on." Other than my rock that is my husband and my amazing baby, the main thing keeping me going is a post I saw on Facebook from one of my friends. The post talked about how, in the Christian faith, we speak about God not giving you any more than you can handle, but how that statement is slightly flawed. Right now, I feel as if I am getting crushed, so it's kind of hard to swallow that statement. They went on to say how God gives you more than you can handle...wait for it... so that you can't get through alone, you absolutely NEED to run to Him for support. How many times have I felt that I need to do it all alone, that I have to rely on my own strength...even a few sentences ago in this very blog I state the need I feel to stay strong for my family. Life isn't going to be easy, this time in our lives sure isn't a cakewalk. Even though I feel like I might be free-falling, I know what strength and hope I have is in God and from God and that gives me the wings I need to fly. I'm clinging to this thought with everything I have.
So, Dexter's eye surgery went great! He did end up losing some eyesight in his left eye, but the doctors are optimistic that he will be able to regain the sight. We went to his neuro team appointment in June and had to get a CT scan due to his flat head shape and the open Lambdoids on the top of his head. The results were far from ideal. They told us on the phone that the lower half of his Lambdoids were fused and we needed to come in for a surgical consult. When we went in for the surgical consult, they reviewed the CT results with us and it was actually worse than what they had said over the phone. Dex had closed the Metopic suture (the one running from the nose to the top of the forehead, which fuses by age 2), both sides of the Coronal suture (the one running from ear to ear like a headband, which fuses by age 10), both lower Lambdoid sutures (the one forming an upside down "v" at the back of the head and the one that they opened the top of in his previous surgery, which fuses by age 18), and his Sagittal suture had refused incorrectly and pre-maturely from his first surgery. Pretty much he closed every single suture and if they hadn't opened the top of the Lambdoids in previous surgery, his brain would have had nowhere to grow. This caused it to grow up toward the back giving him a flat head.
We have been scheduled for surgery on August 6th. The doctors are going to try a dis-traction procedure. They will cut the skull in a headband shape and on either side of the cut above the ears they will place plates on the skull and will attach screws that will stick through the skin. After surgery, they will tighten the screws and the screws will push the plates apart, making the two parts of the skull pull apart. We will continue turning the screws for a month and then they will be taken off. The plates will stay open for 3 more months until Dex has another surgery to remove them. They are hoping this will keep the sutures from closing again. They will also re-shape the Sagittal suture. They won't know if they will be able to do this procedure until they have Dex in surgery, because they need to make sure his bone is strong enough to attach the plates to. Unfortunately, with Crouzon's, the bone of the skull can have spots where it is thin. Seems funny in a way that we are battling bone that is strong and hard where it shouldn't be, but are also worried that the bone may be to thin and weak. Anyway, if they can't do that procedure, they will just do a craniectomy at each of the sutures and Dex would have to wear a helmet for several months. Please remember us in your prayers on August 6th.
Our friends, Bryan and Eli, have started a fund for Dex's medical bills. We would appreciate thoughts, well-wishes, and prayers, but if you feel led please consider helping us out. We will send you a headband or bandana for any donation over $15. They are teal (for genetic disorders) and purple (for craniosynostosis) which together represents Crouzon's. Check out the fund site at Give Forward. Thank you so much Eli and Bryan!!!
Pray for strong bones, strong hearts, steady fingers, and smart anesthesiologists!
Love,
Erika, Eric, & Dexter
So, Dexter's eye surgery went great! He did end up losing some eyesight in his left eye, but the doctors are optimistic that he will be able to regain the sight. We went to his neuro team appointment in June and had to get a CT scan due to his flat head shape and the open Lambdoids on the top of his head. The results were far from ideal. They told us on the phone that the lower half of his Lambdoids were fused and we needed to come in for a surgical consult. When we went in for the surgical consult, they reviewed the CT results with us and it was actually worse than what they had said over the phone. Dex had closed the Metopic suture (the one running from the nose to the top of the forehead, which fuses by age 2), both sides of the Coronal suture (the one running from ear to ear like a headband, which fuses by age 10), both lower Lambdoid sutures (the one forming an upside down "v" at the back of the head and the one that they opened the top of in his previous surgery, which fuses by age 18), and his Sagittal suture had refused incorrectly and pre-maturely from his first surgery. Pretty much he closed every single suture and if they hadn't opened the top of the Lambdoids in previous surgery, his brain would have had nowhere to grow. This caused it to grow up toward the back giving him a flat head.
We have been scheduled for surgery on August 6th. The doctors are going to try a dis-traction procedure. They will cut the skull in a headband shape and on either side of the cut above the ears they will place plates on the skull and will attach screws that will stick through the skin. After surgery, they will tighten the screws and the screws will push the plates apart, making the two parts of the skull pull apart. We will continue turning the screws for a month and then they will be taken off. The plates will stay open for 3 more months until Dex has another surgery to remove them. They are hoping this will keep the sutures from closing again. They will also re-shape the Sagittal suture. They won't know if they will be able to do this procedure until they have Dex in surgery, because they need to make sure his bone is strong enough to attach the plates to. Unfortunately, with Crouzon's, the bone of the skull can have spots where it is thin. Seems funny in a way that we are battling bone that is strong and hard where it shouldn't be, but are also worried that the bone may be to thin and weak. Anyway, if they can't do that procedure, they will just do a craniectomy at each of the sutures and Dex would have to wear a helmet for several months. Please remember us in your prayers on August 6th.
Our friends, Bryan and Eli, have started a fund for Dex's medical bills. We would appreciate thoughts, well-wishes, and prayers, but if you feel led please consider helping us out. We will send you a headband or bandana for any donation over $15. They are teal (for genetic disorders) and purple (for craniosynostosis) which together represents Crouzon's. Check out the fund site at Give Forward. Thank you so much Eli and Bryan!!!
Pray for strong bones, strong hearts, steady fingers, and smart anesthesiologists!
Love,
Erika, Eric, & Dexter