Liam's Story & Medical Assistance
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As many of you know, Brandon and I welcomed our sweet Liam Kade into the world on May 9th, six weeks early. I had several issues that landed me in ICU and warranted a 6 day stay in the hospital. Liam, however, seemed to be doing great. He was born with a radial deficiency, meaning that he was missing a bone in his forearm on the left arm, and he was absent functional thumbs on both hands. But he was PERFECT in our eyes!
Liam remained in the NICU at Floyd for 6 weeks. During that time, he just needed to learn to drink from a bottle (which is actually harder than it seems). He struggled with severe acid reflux and micro-aspirations, which landed him back on oxygen with no hope of coming home soon. At the six week mark, we were transferred to Atlanta Children's Hospital to have a few surgeries that would make it a possiblity for Liam to come home. Liam needed a feeding tube placed in his stomach, so he could be feed safely. He had to have a nissen surgery to control the acid reflux (this surgery also prevents him from being able to vomit, or even burp). But they worked wonders on him. He came off the oxygen and was scheduled to come home after his 4 week stay. A 10 week NICU stay was enough!
However, during our stay at CHOA, we received news that no parent ever wants to hear...Liam had a deletion of the 9th chromosome (also known as Kleefstra Syndrome). This deletion controls many aspects of health and brain development. We soon realized that this was the culprit to his feeding issues, rather than him being premature. We began doing tons of research...prayed for a cure...cried endlessly...but ultimately, we realized that he is STILL PERFECT!!!
What we decided then was that we would give Liam the best of the best in every aspect! He will not be the traditional child...he will continue to be our Miracle Baby! He will need extensive therapies and contstant support throughout his life. Lucky for him, he is stuck with two of the most dedicated parents!
During all of this, I was not able to return to work after my maternity leave was up. Liam needed me to be in Atlanta with him. Brandon and I traveled to Floyd EVERY single day for 6 weeks. I stayed in Atlanta for 4 solid weeks, without leaving. Brandon had returned to work by then, so he came to Atlanta on the weekends. Liam has since had another surgery to repair three hernias, which warranted another hospital stay.
Yesterday, Liam had an appointment with Orthopaedics for his left arm and hands. Dr Peljovich is a Pedicatric specialist in Atlanta and is very well known for his work. He was our ONLY choice when considering the surgery that Liam will need. However, he is not fully covered on our insurance. After meeting with Dr. P., he explained that Liam will need his first surgery by 6-7 months of age to have the most functional use of his hands. We were not expecting the surgery to happen so soon (Late November, early December), but if that is what he needs, then there is no other option.
Due to Liam's condition, he has multiple appointments every week in Atlanta. Some are follow up appointments to monitior his progress. But each week we travel to Atlanta for his Speech therapy, Physical Therapy, and Occupational Therapy. This will continue every week until he is much older and his brain has developed more. These therapies are a vital importance to maxime his development.
Brandon and I have spent thousands of dollars already bewteen travel, lodging, food, and medical expenses. We are short one income, have depleted our savings, and still have bills rolling in. We do not qualify for any type of assistance because we are at the threshold income...we barely make too much for every program I have contacted. With that being said, Brandon and I have tried ever means before resorting to this, but we are now asking our friends and family for your support. We are asking for support with the medical bills stacked up on the counter...the cost of travel to go back and forth to Atlanta each week...help with the hefty co-pay of his hand surgeries coming up. Any assistance will be grately appreciated and used solely for Liam. Please continue to Pray for our Sweet Boy. He may face many challenges in this life, but the need for love and support will not be an issue.
Thank you all for following Liams' story!
Liam remained in the NICU at Floyd for 6 weeks. During that time, he just needed to learn to drink from a bottle (which is actually harder than it seems). He struggled with severe acid reflux and micro-aspirations, which landed him back on oxygen with no hope of coming home soon. At the six week mark, we were transferred to Atlanta Children's Hospital to have a few surgeries that would make it a possiblity for Liam to come home. Liam needed a feeding tube placed in his stomach, so he could be feed safely. He had to have a nissen surgery to control the acid reflux (this surgery also prevents him from being able to vomit, or even burp). But they worked wonders on him. He came off the oxygen and was scheduled to come home after his 4 week stay. A 10 week NICU stay was enough!
However, during our stay at CHOA, we received news that no parent ever wants to hear...Liam had a deletion of the 9th chromosome (also known as Kleefstra Syndrome). This deletion controls many aspects of health and brain development. We soon realized that this was the culprit to his feeding issues, rather than him being premature. We began doing tons of research...prayed for a cure...cried endlessly...but ultimately, we realized that he is STILL PERFECT!!!
What we decided then was that we would give Liam the best of the best in every aspect! He will not be the traditional child...he will continue to be our Miracle Baby! He will need extensive therapies and contstant support throughout his life. Lucky for him, he is stuck with two of the most dedicated parents!
During all of this, I was not able to return to work after my maternity leave was up. Liam needed me to be in Atlanta with him. Brandon and I traveled to Floyd EVERY single day for 6 weeks. I stayed in Atlanta for 4 solid weeks, without leaving. Brandon had returned to work by then, so he came to Atlanta on the weekends. Liam has since had another surgery to repair three hernias, which warranted another hospital stay.
Yesterday, Liam had an appointment with Orthopaedics for his left arm and hands. Dr Peljovich is a Pedicatric specialist in Atlanta and is very well known for his work. He was our ONLY choice when considering the surgery that Liam will need. However, he is not fully covered on our insurance. After meeting with Dr. P., he explained that Liam will need his first surgery by 6-7 months of age to have the most functional use of his hands. We were not expecting the surgery to happen so soon (Late November, early December), but if that is what he needs, then there is no other option.
Due to Liam's condition, he has multiple appointments every week in Atlanta. Some are follow up appointments to monitior his progress. But each week we travel to Atlanta for his Speech therapy, Physical Therapy, and Occupational Therapy. This will continue every week until he is much older and his brain has developed more. These therapies are a vital importance to maxime his development.
Brandon and I have spent thousands of dollars already bewteen travel, lodging, food, and medical expenses. We are short one income, have depleted our savings, and still have bills rolling in. We do not qualify for any type of assistance because we are at the threshold income...we barely make too much for every program I have contacted. With that being said, Brandon and I have tried ever means before resorting to this, but we are now asking our friends and family for your support. We are asking for support with the medical bills stacked up on the counter...the cost of travel to go back and forth to Atlanta each week...help with the hefty co-pay of his hand surgeries coming up. Any assistance will be grately appreciated and used solely for Liam. Please continue to Pray for our Sweet Boy. He may face many challenges in this life, but the need for love and support will not be an issue.
Thank you all for following Liams' story!
Organizer
Mandy Thompson
Organizer
Centre, AL
