Making Headway
This last week has been a very encouraging one! Everywhere I go, I run across people who tell me they are following my blog and praying for us and the baby. It's just beautiful and touches our hearts so deeply to know so many people care and are lifting our family up. You all will never know how much wind you are keeping our sails right now and just how much your encouraging words mean.
This last week has been filled with God literally guiding our steps and making some incredible connections. I could fill this blog with all the nitty gritty details, but I'll spare you a really long read. =) Through a couple of mutual friends, we found out about a Pediatrician only five minutes from our house that has a subset of Craniofacial patients! He is very familiar with our issues and has room to take on our family in his practice! We have an after hours meet and greet with him tomorrow and will be able to ask him a lot of questions as well as his personal recommendations for a surgical/care team. I'm very excited about making this connection as it brings a lot of comfort to my heart to know that we can be under the care of a Pediatrician who is so familiar with our specific issues, that he can be proactive in our little boy's care and will know what to look for as he develops. Isn't God so good?
We also have an appointment with a surgical/care team on January 15th! As I've researched and asked for referrals, the same, Dr keeps popping up in various conversations. I was amazed to find out when I called to schedule an "interview" that he is the Chief Plastic Surgeon at Children's Health Care of Atlanta and he was accepting patients! Again, feeling like God is just lining things up for us and I am in awe at His faithfulness to us. We will spend all day on January 15th meeting the Surgeon, Feeding specialists, Orthodontist team, ENT and hopefully touring the Scottish Rite campus.
As I was talking to the nurse and setting up our big day, I finally got a good idea of a time line and what exactly our future might look like. In the midst of praise for God's guidance, there is still some heaviness as this is going to be a very long road ahead of us. In talking with the nurse, she told me we would be seeing her for the next 20 years! I was a bit floored. In her words, "Don't think you're two surgeries and done. He will have multiple surgeries over the next several years." Yikes! I didn't see that coming.
Expected Timeline:
Birth/Week 1: Meet with feeding specialist (#1 goal is keeping baby nourished!), meet with surgeon to get his full assessment and orthodontist to have a retainer like device made for his little palate to help close the hole (this takes 6ish weeks to make). We will also learn how to tape his lip closed until surgery can happen.
3-6 Months: 1st surgery to repair his lip and possibly put tubes in his ears if there are drainage issues.
6-9 Months: 1st surgery to begin palate repair. We have to wait 2 months for healing post lip repair before we can begin on palate.
9 mos - 10 years old: a great possibility of the palate reopening multiple times due to growth and kids just being kids. =) There is also the potential for needing speech therapy somewhere in here as well.
10-15 Years Old: they will finally be able to put bone (often harvested from the hip of the patient) in the palate and do a final closure.
We are very excited to learn that Atlanta has some of THE best Drs in the U.S. that specialize in Cleft issues. In all of God's goodness, a friend connected me to a friend who plugged me in with some private groups on FB for Moms of Cleft kids. Some of these Moms are trying to come to Atlanta from other states because of the specialists that are here! We are SO blessed to have these Drs. in our city. This group of Moms truly is a beautiful network of encouragement, a safe place for fielding questions, sharing stories and pictures of our beautifully unique kids. I am so grateful to be able to ask my questions and get a very realistic idea from these Moms of what we are facing with feeding challenges and surgeries in the next year. At the same time, it does make my heart heavy. We have a long road ahead of us and it will be a tough journey on our little guy and on our family, I'm just so grateful though, that God is on our side and making His presence very real to us and guiding us in the midst of all the unknowns.
All this last week as we've made headway with each of these connections, God keeps bringing Isaiah 30:21 over and over to my mind. "You shall hear a voice behind you saying this is the way, walk ye in it."
This last week has been filled with God literally guiding our steps and making some incredible connections. I could fill this blog with all the nitty gritty details, but I'll spare you a really long read. =) Through a couple of mutual friends, we found out about a Pediatrician only five minutes from our house that has a subset of Craniofacial patients! He is very familiar with our issues and has room to take on our family in his practice! We have an after hours meet and greet with him tomorrow and will be able to ask him a lot of questions as well as his personal recommendations for a surgical/care team. I'm very excited about making this connection as it brings a lot of comfort to my heart to know that we can be under the care of a Pediatrician who is so familiar with our specific issues, that he can be proactive in our little boy's care and will know what to look for as he develops. Isn't God so good?
We also have an appointment with a surgical/care team on January 15th! As I've researched and asked for referrals, the same, Dr keeps popping up in various conversations. I was amazed to find out when I called to schedule an "interview" that he is the Chief Plastic Surgeon at Children's Health Care of Atlanta and he was accepting patients! Again, feeling like God is just lining things up for us and I am in awe at His faithfulness to us. We will spend all day on January 15th meeting the Surgeon, Feeding specialists, Orthodontist team, ENT and hopefully touring the Scottish Rite campus.
As I was talking to the nurse and setting up our big day, I finally got a good idea of a time line and what exactly our future might look like. In the midst of praise for God's guidance, there is still some heaviness as this is going to be a very long road ahead of us. In talking with the nurse, she told me we would be seeing her for the next 20 years! I was a bit floored. In her words, "Don't think you're two surgeries and done. He will have multiple surgeries over the next several years." Yikes! I didn't see that coming.
Expected Timeline:
Birth/Week 1: Meet with feeding specialist (#1 goal is keeping baby nourished!), meet with surgeon to get his full assessment and orthodontist to have a retainer like device made for his little palate to help close the hole (this takes 6ish weeks to make). We will also learn how to tape his lip closed until surgery can happen.
3-6 Months: 1st surgery to repair his lip and possibly put tubes in his ears if there are drainage issues.
6-9 Months: 1st surgery to begin palate repair. We have to wait 2 months for healing post lip repair before we can begin on palate.
9 mos - 10 years old: a great possibility of the palate reopening multiple times due to growth and kids just being kids. =) There is also the potential for needing speech therapy somewhere in here as well.
10-15 Years Old: they will finally be able to put bone (often harvested from the hip of the patient) in the palate and do a final closure.
We are very excited to learn that Atlanta has some of THE best Drs in the U.S. that specialize in Cleft issues. In all of God's goodness, a friend connected me to a friend who plugged me in with some private groups on FB for Moms of Cleft kids. Some of these Moms are trying to come to Atlanta from other states because of the specialists that are here! We are SO blessed to have these Drs. in our city. This group of Moms truly is a beautiful network of encouragement, a safe place for fielding questions, sharing stories and pictures of our beautifully unique kids. I am so grateful to be able to ask my questions and get a very realistic idea from these Moms of what we are facing with feeding challenges and surgeries in the next year. At the same time, it does make my heart heavy. We have a long road ahead of us and it will be a tough journey on our little guy and on our family, I'm just so grateful though, that God is on our side and making His presence very real to us and guiding us in the midst of all the unknowns.
All this last week as we've made headway with each of these connections, God keeps bringing Isaiah 30:21 over and over to my mind. "You shall hear a voice behind you saying this is the way, walk ye in it."
He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. Isaiah 40:11
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