Baby Walker the Warrior
Donation protected
My name is Ivy and my cousin, Daniel Bosely, and his beautiful bride, Katelyn, just had their second child (you'll see big sister Adalaide who is 15 months old in the photos. She's a trip and will win your heart in 2 seconds flat!) and while they are elated with their new son, Walker has faced more challenges in the first month of his life than some of us will ever face. So, without further ado, meet Walker Kent Bosely; Walker the Warrior as we like to call him. :) He was born 4 weeks prematurely on October 24, 2016 with Pierre Robin Sequence. Pierre Robin Sequence is a set of abnormal physical symptoms which include a very recessed jaw, a small tongue, and a cleft soft palate. Many times chromosome abnormalities accompany PRS but, by the grace of our sweet Lord, Walker's chromosome studies came back normal. While he does have a small tongue, a cleft soft palate, and a recessed jaw, his biggest and most life threatening problem is that his jaw was so short that it allowed his tongue to block his airway very easily. He also couldn't form a seal in order to nurse or suck from a bottle. He's had to be positioned on his sides and tummy in order for him to breathe. His oxygen levels are good as long as his airways stay open.
Walker has been transported by air from Lake Area Medical Center in Lake Charles, LA to Oschner Baptist Hospital in New Orleans, LA. The doctors here had already seen him and developed a plan before Walker had even arrived. It is physically painful to trust your newborn child to complete strangers and take him to another city but the doctors and nurses at OBH in NOLA have been so amazing with Katelyn, Daniel, Adalaide and the rest of our family that it has put Katelyn and Daniel at ease.
After being examined, the doctors decided the best option for Walker would be to do a mandibular distraction. A mandibular distraction is a surgical procedure to lengthen his lower jaw. This surgery would keep him from having to have a tracheotomy by moving the tongue further away from the back of the throat which will keep his airway open. It will also allow him to create a suction for feeding (he's been fed through a tube his entire life) and prevent him from having to have a PEG tube inserted into his stomach for feeding.
He had the surgery on November 20, 2016. They cut his little jaw on both sides, close to his ears, and inserted pins on either side leaving a small knob on the outside behind his ears. They will twist these knobs 0.9 millimeters twice a day. The goal is to lengthen his jaw 20 millimeters. That will be at least 10-12 days in the NICU in a big, strange town. He will have to have additional surgery in 3 months to remove the rods in his jaw and yet another surgery to close the cleft soft palate after he reaches 20 lbs. As of 11/25/16, he has passed the 7 lb mark! Yay! This is big news in our world these days!
While they are trusting in the Lord through all of this, Katelyn & Daniel struggle with splitting their time between their 2 miracles, 15 month old Adalaide and 1 month old Walker, the warrior. They're balancing as much time with both as they can but they know that both feel their absence since they can't be with both children at the same time right now. Daniel is also having to return to work very soon and that is a very difficult thing to swallow at this time. The cost of a hotel room in NOLA is outrageous and who knows how much the hospital bills for the outstanding care Walker has already recieved as well as the upcoming and continual care that will be needed in the future. It is overwhelming at times for them. Our cousin Frank & other immediate family members have graciously found them resources that is helping to cut some costs but there is still so much more that is needed.
So, I thought it'd be a neat thing for all of us that want to be able to help but don't know how, to have this page to see updates and to donate/help this way. Please do not feel obligated to give monetary support as prayers are just as needed. We love and appreciate you all & anything contributed, wether a phone call, prayers, texts, or money. They are feeling the love and support from near and far and have no words to even begin to express their gratitude. Thank you all so much for the continued prayers and God bless!
Walker has been transported by air from Lake Area Medical Center in Lake Charles, LA to Oschner Baptist Hospital in New Orleans, LA. The doctors here had already seen him and developed a plan before Walker had even arrived. It is physically painful to trust your newborn child to complete strangers and take him to another city but the doctors and nurses at OBH in NOLA have been so amazing with Katelyn, Daniel, Adalaide and the rest of our family that it has put Katelyn and Daniel at ease.
After being examined, the doctors decided the best option for Walker would be to do a mandibular distraction. A mandibular distraction is a surgical procedure to lengthen his lower jaw. This surgery would keep him from having to have a tracheotomy by moving the tongue further away from the back of the throat which will keep his airway open. It will also allow him to create a suction for feeding (he's been fed through a tube his entire life) and prevent him from having to have a PEG tube inserted into his stomach for feeding.
He had the surgery on November 20, 2016. They cut his little jaw on both sides, close to his ears, and inserted pins on either side leaving a small knob on the outside behind his ears. They will twist these knobs 0.9 millimeters twice a day. The goal is to lengthen his jaw 20 millimeters. That will be at least 10-12 days in the NICU in a big, strange town. He will have to have additional surgery in 3 months to remove the rods in his jaw and yet another surgery to close the cleft soft palate after he reaches 20 lbs. As of 11/25/16, he has passed the 7 lb mark! Yay! This is big news in our world these days!
While they are trusting in the Lord through all of this, Katelyn & Daniel struggle with splitting their time between their 2 miracles, 15 month old Adalaide and 1 month old Walker, the warrior. They're balancing as much time with both as they can but they know that both feel their absence since they can't be with both children at the same time right now. Daniel is also having to return to work very soon and that is a very difficult thing to swallow at this time. The cost of a hotel room in NOLA is outrageous and who knows how much the hospital bills for the outstanding care Walker has already recieved as well as the upcoming and continual care that will be needed in the future. It is overwhelming at times for them. Our cousin Frank & other immediate family members have graciously found them resources that is helping to cut some costs but there is still so much more that is needed.
So, I thought it'd be a neat thing for all of us that want to be able to help but don't know how, to have this page to see updates and to donate/help this way. Please do not feel obligated to give monetary support as prayers are just as needed. We love and appreciate you all & anything contributed, wether a phone call, prayers, texts, or money. They are feeling the love and support from near and far and have no words to even begin to express their gratitude. Thank you all so much for the continued prayers and God bless!
Organizer and beneficiary
Ivy Brightwell French
Organizer
Lake Charles, LA
Daniel Bosely
Beneficiary