One Year...
One year ago we were a family of three - hours away from becoming a family of four. We knew that little man was due any day - we had his name all picked out, his nursery ready (well the essentials were ready because it's hard to get everything ready with a busy two year old 'helping'), bags were packed and it was just a matter of when he would choose to arrive. We knew life was about to change in a big way but really had no idea just what the next year would hold.
Many of you know the roller coaster that began soon after. Our first day with little man was magical - love at first sight and even Anna adored him (let's be honest - who wouldn't love that cutie). The next day was his newborn hearing screening. When they gave the test the first time - he didn't pass. They gave the test a second time - he still didn't pass. We thought nothing of it and neither did the staff, they gave us a date and time to come back to the hospital for a retest a week later. One week later we were being given the news that he had failed a hearing test yet again and we would need to meet with an audiologist and we needed to prepare ourselves for the likely fact that Jamesey was at minimum hard of hearing but most likely deaf.
We had a month to wait until our appointment at Pinnacle Health and we kept ourselves from freaking out by believing that the likely information was wrong & that there was probably fluid in his ears and that his hearing was fine. Newborn pictures, beach trips, family adjustments and a busy business kept us on our toes and we were able to reassure ourselves that this would all blow over. Denial is a beautiful thing. Finally, in September we had our appointment and received the news that the screening was correct and our little man was deaf (likely moderate to severely deaf in each ear). Needless to say we were shell shocked and struggling to find hope in it all, but God is good and hope began to resurface.
October began with a visit to the audiologist for another evaluation and to discuss our next steps - second opinion or just keep working with Pinnacle. I still remember the drive across the Harvey-Taylor that morning. Our appointment was October 4 at 8 a.m and traffic was heavy. The song Cornerstone by Hillsong had been playing and little man was crying - I was crying because I couldn't even comfort my baby because he couldn't hear me and that was the most basic way to reassure him. The appointment itself is a blur - I remember that he failed another ABR exam and that we needed to make some decisions. On the recommendation of several trusted doctors, we decided to pursue an appointment with Audiology at Children's Hospital of Philadelphia. We called for that appointment and were scheduled for early November. By that point I was back at work and little man had begun attending the early learning center on campus.
Open House was rapidly approaching and little man had a cold - Anna was doing great - precocious 2 year old that she was :) It was a Monday afternoon and I walked up to check on the kiddos - when I snuggled little man he seemed tired but okay and then I noticed his breathing was labored. After calling our pediatricians office - they fit us in immediately - Jamesey and I made a quick trip to the drs. Or we thought it would be a quick trip...we called Jer and told him we were heading in for an appointment and would call him when it was over. Next thing I knew little man was being placed on oxygen and and a call was being placed for an ambulance.
We were loaded into the ambulance and ready to go - little man was still on oxygen and the driver let us know that we would need to wait for another ambulance because our current ride had just blown a gasket. So out we went and into a new ride - by this point we were over an hour past the time I thought we would be at the hospital and poor Jer has been calling my phone trying to find out where we were. Little Man's Oxygen levels were rough and he was admitted - some images I will never forget include watching the admittedly incredible nursing staff place an IV into the head of my 3 month old son. I will never forget his cries becoming so hoarse that they faded away even though the tears kept coming (both mine and his). That began a week long dance with bronchiolitis and oxygen levels until finally 7 days later we were sent home with him on oxygen. He never needed the oxygen at home and recovered fully. He's a fighter!
By the time we were discharged we had rescheduled our CHOP appointment to November 14. That day we headed out to our very first of many appointments with Dr. Javia an ENT Surgeon with CHOP. We met with an audiologist for ear molds for hearing aids & learned about our options for cochlear implants. It was a big and very emotional day - but we left with hope in our hearts.
Several weeks rolled by and we couldn't believe how big our little man was getting - his appointments were showing progress but also a developmental delay and so we began working with Early Intervention. Little man had weekly Physical Therapy and Bi-Weekly Hearing Therapy - we were blessed with phenomenal caregivers...and looming over it all was the knowledge that we needed to find childcare for Jamesey come June as the infant/toddler room at the ELC would be closing. In the midst of all of this Jamesey developed another cold and we were watching him closely. We had testing that he needed to undergo to determine his Cochlear Implant candidacy and we were scheduling those appointments around a busy home life and crazy work schedules - you know how it is - you do what you have to do. But, as things would happen - we ended up making a trip to the emergency room late one January evening. And we were admitted - again...Thankfully the pediatric team was wonderful and took such amazing care - through it all our friends and our family (that's you guys) supported us with so much prayer and lavished so much love on us - it's overwhelming to recall. It's definitely my least favorite superbowl sunday memory but recalling driving home in the midst of a february blizzard five days later still makes me smile - we were going home :) and little man was doing great!
Fast forward to June 23 - I missed a call from the Genetics department at CHOP. Little man is 11 months old and we're waiting on the test results that were ordered as a part of his cochlear implant work up. June 24 and Jer managed to get a hold of the team and learn the results. The diagnosis was devastating - James was diagnosed with a rare chromosomal deletion called Kleefstra Syndrome. The condition was first discovered in 2012 and there are fewer than 300 cases known world-wide. Individuals with Kleefstra typically have physical abnormalities, developmental delays, and diminished cognitive ability - occasionally accompanied by hearing loss. Devastated doesn't begin to cover our emotional response to that news - I can't imagine how a parent would receive the news that they were going to lose a child - the pain of loss in this circumstance was awful and still is...I can't imagine anything worse...
Now we're a month out from the diagnosis - or just about - and while the hurt is still real and very present I have to say that we're finding hope. Hope for little man - hope in the words of friends who feel confident that God has a purpose for little man and the belief that this little life is going to accomplish big things. We're holding onto that and believing that Jamesey will write his own story that is unlike anyone elses - different from Anna's and different from anyone else with Kleefstra. More about all that later. Right now we're getting ready to celebrate - he's almost 1! We have a date for his cochlear implants (August 8) but right now - we're going to look back at this past year and celebrate that he's our little Jamesey and we love him. Our lives are better because he's in them and we're going to enjoy every minute.
You're welcome to follow our story - I'll try to keep this up to date - but more than following our story we ask for your prayers. This is a new road and we're believing that God can do big things - we don't know what that'll be - we still pray for healing and that little man will exceed expectations - he's such a little love that he's already exceeded ours :) Thanks for walking with us, praying with us, believing with us and hoping with us. Welcome to Life On Lisburn.
Many of you know the roller coaster that began soon after. Our first day with little man was magical - love at first sight and even Anna adored him (let's be honest - who wouldn't love that cutie). The next day was his newborn hearing screening. When they gave the test the first time - he didn't pass. They gave the test a second time - he still didn't pass. We thought nothing of it and neither did the staff, they gave us a date and time to come back to the hospital for a retest a week later. One week later we were being given the news that he had failed a hearing test yet again and we would need to meet with an audiologist and we needed to prepare ourselves for the likely fact that Jamesey was at minimum hard of hearing but most likely deaf.
We had a month to wait until our appointment at Pinnacle Health and we kept ourselves from freaking out by believing that the likely information was wrong & that there was probably fluid in his ears and that his hearing was fine. Newborn pictures, beach trips, family adjustments and a busy business kept us on our toes and we were able to reassure ourselves that this would all blow over. Denial is a beautiful thing. Finally, in September we had our appointment and received the news that the screening was correct and our little man was deaf (likely moderate to severely deaf in each ear). Needless to say we were shell shocked and struggling to find hope in it all, but God is good and hope began to resurface.
October began with a visit to the audiologist for another evaluation and to discuss our next steps - second opinion or just keep working with Pinnacle. I still remember the drive across the Harvey-Taylor that morning. Our appointment was October 4 at 8 a.m and traffic was heavy. The song Cornerstone by Hillsong had been playing and little man was crying - I was crying because I couldn't even comfort my baby because he couldn't hear me and that was the most basic way to reassure him. The appointment itself is a blur - I remember that he failed another ABR exam and that we needed to make some decisions. On the recommendation of several trusted doctors, we decided to pursue an appointment with Audiology at Children's Hospital of Philadelphia. We called for that appointment and were scheduled for early November. By that point I was back at work and little man had begun attending the early learning center on campus.
Open House was rapidly approaching and little man had a cold - Anna was doing great - precocious 2 year old that she was :) It was a Monday afternoon and I walked up to check on the kiddos - when I snuggled little man he seemed tired but okay and then I noticed his breathing was labored. After calling our pediatricians office - they fit us in immediately - Jamesey and I made a quick trip to the drs. Or we thought it would be a quick trip...we called Jer and told him we were heading in for an appointment and would call him when it was over. Next thing I knew little man was being placed on oxygen and and a call was being placed for an ambulance.
We were loaded into the ambulance and ready to go - little man was still on oxygen and the driver let us know that we would need to wait for another ambulance because our current ride had just blown a gasket. So out we went and into a new ride - by this point we were over an hour past the time I thought we would be at the hospital and poor Jer has been calling my phone trying to find out where we were. Little Man's Oxygen levels were rough and he was admitted - some images I will never forget include watching the admittedly incredible nursing staff place an IV into the head of my 3 month old son. I will never forget his cries becoming so hoarse that they faded away even though the tears kept coming (both mine and his). That began a week long dance with bronchiolitis and oxygen levels until finally 7 days later we were sent home with him on oxygen. He never needed the oxygen at home and recovered fully. He's a fighter!
By the time we were discharged we had rescheduled our CHOP appointment to November 14. That day we headed out to our very first of many appointments with Dr. Javia an ENT Surgeon with CHOP. We met with an audiologist for ear molds for hearing aids & learned about our options for cochlear implants. It was a big and very emotional day - but we left with hope in our hearts.
Several weeks rolled by and we couldn't believe how big our little man was getting - his appointments were showing progress but also a developmental delay and so we began working with Early Intervention. Little man had weekly Physical Therapy and Bi-Weekly Hearing Therapy - we were blessed with phenomenal caregivers...and looming over it all was the knowledge that we needed to find childcare for Jamesey come June as the infant/toddler room at the ELC would be closing. In the midst of all of this Jamesey developed another cold and we were watching him closely. We had testing that he needed to undergo to determine his Cochlear Implant candidacy and we were scheduling those appointments around a busy home life and crazy work schedules - you know how it is - you do what you have to do. But, as things would happen - we ended up making a trip to the emergency room late one January evening. And we were admitted - again...Thankfully the pediatric team was wonderful and took such amazing care - through it all our friends and our family (that's you guys) supported us with so much prayer and lavished so much love on us - it's overwhelming to recall. It's definitely my least favorite superbowl sunday memory but recalling driving home in the midst of a february blizzard five days later still makes me smile - we were going home :) and little man was doing great!
Fast forward to June 23 - I missed a call from the Genetics department at CHOP. Little man is 11 months old and we're waiting on the test results that were ordered as a part of his cochlear implant work up. June 24 and Jer managed to get a hold of the team and learn the results. The diagnosis was devastating - James was diagnosed with a rare chromosomal deletion called Kleefstra Syndrome. The condition was first discovered in 2012 and there are fewer than 300 cases known world-wide. Individuals with Kleefstra typically have physical abnormalities, developmental delays, and diminished cognitive ability - occasionally accompanied by hearing loss. Devastated doesn't begin to cover our emotional response to that news - I can't imagine how a parent would receive the news that they were going to lose a child - the pain of loss in this circumstance was awful and still is...I can't imagine anything worse...
Now we're a month out from the diagnosis - or just about - and while the hurt is still real and very present I have to say that we're finding hope. Hope for little man - hope in the words of friends who feel confident that God has a purpose for little man and the belief that this little life is going to accomplish big things. We're holding onto that and believing that Jamesey will write his own story that is unlike anyone elses - different from Anna's and different from anyone else with Kleefstra. More about all that later. Right now we're getting ready to celebrate - he's almost 1! We have a date for his cochlear implants (August 8) but right now - we're going to look back at this past year and celebrate that he's our little Jamesey and we love him. Our lives are better because he's in them and we're going to enjoy every minute.
You're welcome to follow our story - I'll try to keep this up to date - but more than following our story we ask for your prayers. This is a new road and we're believing that God can do big things - we don't know what that'll be - we still pray for healing and that little man will exceed expectations - he's such a little love that he's already exceeded ours :) Thanks for walking with us, praying with us, believing with us and hoping with us. Welcome to Life On Lisburn.
Joyful, I'm so proud of you! I love you and I hope you keep writing!
ReplyDeleteI'm inspired by your faith, encouraged by your love, and proud of the mommy you are. Thanks for letting us be part of the journey. Blessed by you friend!!
ReplyDeleteOh, how I can relate to so much of what you write! It's not a story or path that we would choose for ourselves or our children but we trust a God that is so much bigger than all of our questions, pain, and finite understanding. Jamesy is loved and he does have an amazing purpose. Blessings for the journey. I can't remember if I've shared this with you before, or maybe someone else has, but it captures our feelings so well, http://www.our-kids.org/archives/Holland.html
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