We have shared that 4 of our 5 wild things have a variety of special needs and medical issues. Dylan has Down syndrome. Savannah has Tetrology of Fallot. Lincoln has Microcia of the ear. Each of these conditions is self-explanatory or can be easily accessed online.
Our 2nd son, Jeremy, has a hormone deficiency. This is a vague description. Honestly, Rob and I generally aren't "vague". We either share or we don't. We're either open and honest about something or we simply avoid the topic all together. It's just who we are.
Within hours of Jeremy's birth, it was known that something within his sweet body wasn't properly functioning. Within hours of birth, testing was done, to ensure he didn't need to be airlifted to the nearest Children's Hospital for surgery and/or more invasive treatment. We were fortunate that his condition was stable and has remained so for nearly thirteen years. But we've always known there was a day coming that hormone treatment and eventual surgeries will be needed.
Honestly, until April 30th, 2017, neither Rob or I had a full grasp on Jeremy's condition. He's been monitored regularly and we've always had a general idea of what was going on and some idea of what his health requirements would eventually be, but we received little feedback from the docs. We never over thought this, as his condition isn't life threatening. When we did research his condition, there was little to be found and what we did find aligned with everything his docs had always discussed with us.
But then we found ourselves on Sunday, April 30th, 2017. We knew the docs said that his treatment would likely begin during the pubescent years, but after much hemming and hawing, nothing was happening with the doctors. As his parents, we did what we do best - research, research, research. We had researched before, but the results were minimal. That wasn't the case this time around. After just a matter of hours in front of a computer on 4/30/17, it was if we struck gold about Jeremy's condition.
Why now? Frankly, we believe time just needed to pass. Studies, patient case files, decades of research, etc, just needed time to make it's way to the internet. Social media - Facebook specifically - needed to come into existence. In just the past 5-7 years has the most information seem to have come to light about this specific diagnosis. We knew it was rare, but it's kinda crazy rare. Like approximately 56 cases documented in medical literature rare. Yeah, let that sink in. Jeremy is 1 of 56'ish...
But guess what I found?! I found a private, closed Facebook group for parents and patients living with this condition. There are less than 100 members in the group and they span the globe - from the USA, to Canada, to Europe, to Ireland, to South America, to Cambodia and so on - these people are from every part of the world. The page members consists of parents and patients and the oldest patient is in their 40's. Frankly, I can't even imagine how lost that patient's parents felt over four decades ago when their sweet babe received this diagnosis! To further complicate things, years ago, it wasn't always caught at birth and can lead to more significant issues later if the need for early intervention is needed and not received! As for the patients, it's an incredible resource - from comparing treatment options and outcomes to the general day to day of living with it, especially for those who are older. It has been a wealth of information and we have been able to answer so many of Jeremy's questions. Down the road, as Jeremy moves into adulthood with this condition, he will have a network of support. What an answer to prayer!
In less than an hour on this Facebook page, we got more answers than we had gotten in over twelve years! It was a relief, but it also brought about many more questions. It was also like getting the diagnosis ALL OVER AGAIN. There was also a level of frustration and anger towards the medical community. We wished they had been more forth right about it all, so we might have "dug together" to seek answers for our boy. But no, instead we found ourselves having to dig and advocate on our own.
Jeremy is ok. He is growing and thriving and we are thankful for that. There is some testing that probably should have begun when he was approximately ten and some "catch up" will likely have to occur - treatment will be intense out the gate. Will this impact him long term? Likely not, but definitely disappointed in the medical community.
Once treatment begins, it will be for the duration of his life, something else that originally hadn't been made clear. Given the rarity of the condition, some of the mid and long term potential side effects of required treatment are just beginning to be known. It's been a lot to soak in.
As for Jeremy, he is fully aware of his condition, but he was given the entire "411" in recent weeks, as we simply didn't have much to give him previously. There is no doubt his life long exposure to special needs and diverse medical conditions prepared him for his diagnosis. He said "this sucks" and "that's sad" as we detailed the various aspects of his condition, but God's presence in the room was undeniable, as we laid it all out there for him. As he comes to terms with what the future holds for him, his emotions will vary, as they should. Yet to witness his initial reaction was a reminder of God's unfaltering faithfulness in the midst of trying times. At one point, he stated that it was "pretty cool" that he was 1 of 56'ish, even if he did have to get treatment all his life! God is at work in this young man's heart and mind.
It was already "out there" to the general community that he had something going on and as we move forward, this is what we have chosen to share, with his permission. Someday, Jeremy may choose to elaborate on how God has uniquely designed him - that will be up to him. For now, this is what we've opted to share. I actually wrote this blog on a whim, not intending to publish, but a variety of events have brought us to put this much out there. That's another blog...God is cool...
Things will be moving swiftly pretty much immediately, to ensure his best health. If our boy happens to cross your mind, we are asking that you say a prayer for him...
Pray for wisdom as the docs decipher scans and blood work and determine his hormone treatment regiment
Pray for patience and endurance as blood work and his shot regimen begins - blood work will be every three months (at least) and shots will be every 14 days for the next 3-4 years, then 1-2 monthly for the duration of his life
Pray for the timing of surgery - 1 or 2 surgeries will eventually be needed, probably in about 3 years, but timing will depend heavily on the results of hormone treatment
We don't know the details of all that is too come for our boy, but God DOES and Jeremy has been designed by Him, in His image, for His glory, now and forever.