Maybe we could describe what happened on this blog these past 4 1/2 years as writer's block. It has been so long since I have updated this blog! For most of my life, I've processed my surroundings and experiences with words, but the last years, there have been moments when I've realized that the words I was writing down were becoming fewer. Is it because I have four children, am in the thick of homeschooling, ministry, home-life, and marriage? Maybe. Or is it that I have started to bury some of the feelings and thoughts that come with having a child who has a very rare and complicated diagnosis and haven't wanted to draw them back out again as inevitably happens when you write? Again, maybe. I've realized that I've pushed a lot of the memories of my earlier years of motherhood aside (especially the medical parts) and have been busy focusing on the present. These have been rich years of pouring into my kids, my marriage, and the many relationships God has brought into my life. Years of learning. So. Much. Learning. And falling in love with the learning process all over again, as well as having opportunities to passionately share the Lord and His story with many, especially with my children who have been thriving in so many ways. The Lord has also graciously added a new member to our family during this time - our sweet Daniel, who will be two in May!
These have also been years that have, relatively speaking, been pretty low-key as far as Joel's medical process has gone. Sure, there have been lots of routine check ups. There have been eye appointments, patches, glasses, dentist appointments, orthodontist appointments, a palate expander, sleep studies, MRIs, and appointments with both Joel's neurosurgeon and craniofacial surgeon. Last year Joel even had another minor surgery done on his hand to separate the final pinkie that was never separated! (This past winter he was able to wear five-fingered gloves for the first time!) It was an out-patient procedure though, and although it did affect last summer in some ways (especially our ability to go to swimming pools!), overall, it wasn't a big deal compared to all the other surgeries he had previously had.
As the end of 2022 rolled around, however, an appointment with Dr. Fearon confirmed that it was time to start thinking of surgeries again after years of tranquility on the medical front. Typically, between 8-10 years, (while in some cases, earlier and others, later) kids with Apert Syndrome will need to have what is called a LeFort III done. Joel is nearing the time to need this very important and delicate surgery to move his mid face forward. From the Craniofacial Center here is Dallas: "Based on measurements taken from our center’s anthropologist in Dallas, it appears that the midface in children with Apert syndrome grows forward only about 1/3 normal speed and another study suggested that all forward growth stops about age 9." To read more specifically about this surgery he will need and a device that will be placed on him called a halo device, click here: http://www.thecraniofacialcenter.com/apert_treat_midface.html. To watch a short documentary on another boy who underwent this procedure with Dr. Fearon, click here: https://www.youtube.com/watch?v=alYfkkHDAtc.
One of our first questions when we learned of this surgery was "Is it necessary?" We weren't sure we wanted it done if it was solely cosmetic. However, Dr. Fearon assured us that it is medically necessary for Joel. Overall, our hope is that this surgery will have a major impact on his breathing, ability to chew, and speech. It will also have a big impact on his appearance, very much changing how his face looks. Our family is already grieving this latter impact, as we have completely fallen in love with Joel's current face.
During this appointment with Dr. Fearon at the end of last year, he surprised us by letting us know that Joel would need to undergo another Cranial Vault Expansion in preparation for his LeFort III. Sadly, another young girl of the Apert Syndrome community passed away in recent years during her LeFort III procedure due to intracranial pressure. Although Joel was not showing any signs of intracranial pressure on his last MRI, Dr. Fearon wanted him to have this Cranial Vault Expansion done again beforehand as a precaution and in preparation for this next big goal - the LeFort III - and this would need to be done at least a year in advance. So, Joel underwent this Cranial Vault Expansion almost 3 weeks ago! We have been in the thick of recovery these last several weeks, with many ups and downs, but overall, seeing the Lord faithfully sustaining us once more.
This week, I got back on this blog after years of neglecting it, and as I started to re-read posts from the past (and even share them with all of my kids, who eagerly surrounded me and my laptop), I was overwhelmed by the many testimonies that I previously recorded of God's care for us. There were so many details that I hadn't remembered in years and such overwhelming evidence of God's goodness to us as a family through the many ups and downs of this process. We loved watching the videos and looking at the pictures of the early years of Joel and his siblings' lives. I was reminded about how important it is to look back and remember all that God has done for us. I also realized that it was time to get over my writer's block and start to write again. So, here I am, and in an effort to not make one very, very long post, I'm going to try to get you up to date on these last weeks of surgery and recovery in a few stages, so stay tuned for part 2!
No comments:
Post a Comment