We had endocrinology and genetics appointments all afternoon Friday - long day of back to back doctors for both boys.  Weights are amazing growth is still happening but we may be at a peak of what they'll get to -had we known this disease sooner their growth would have been taller and bones matured fully.  Either way height and weight are mostly in line with what theirs will be with ALD.  Blood work was great for Ry and Kadyns was good too- a couple were off a bit and waiting for doctor to read it and get back to us if any meds need to change or be added. Dr. Hoag our endo doctor also asked both boys if he could use their case to help further education on ALD and adrenal diseases.  There again with two cases presenting differently and wants to use their medical history to help make medical advances all around.  It's all so new and rare and we're blessed that we can help other families.  All doctors asked both boys how they're doing and commented on how great both of them look.  Specifically Rylens color and muscle mass.  Asked how he was doing athletically and academically.  He is excelling at both and finally reaching the potential he should have been able to years ago- both boys for that matter.  Lacey and I often talk about what Kadyns academic and athletic career would have looked like had we caught this earlier.  He did well at sports but then went down hill and always struggled academically.  He now has As Bs and one C in college and plays intermural sports weekly!  Rylen has all As and Bs and basketball started clicking this year - and can't thank his coaches enough for staying on top of his meds at games and working with him to get him to what they know his full potential will be.  Football has been his sport and now he's getting a groove for basketball with coaches who work with him and for him with his medical necessities.  It breaks my heart at times that I didn't push more to see if there was more I was missing with both boys. Their goals may not have been to go to an Ivy League school or play professional sports- but knowing what we know I can't help but think how different it may have turned out. We've had amazing teachers at Rutland that helped Rylen out at a young age to get where he was and now he thrives himself and other teachers who have Kadyn more grace than maybe deserved at times but now knowing what we do can see why he couldn't perform.
We're so blessed both boys can now 
Excel to their full potential with the effort they put in.  I had a women come up to me last weekend and tell me how great of a kid Rylen in- she boasted how polite well mannered and kind he was and just enjoyed talking with him.  If I fail at everything else those comments tell me I've succeeded. I just pray for their health well being and that they are kind loving humans to all kinds of kinds.
We stayed over in Sioux Falls after appointments for a family fun night- we're always down there for doctors so we wanted to make it fun and something to look forward to! We all had the best time and was a nice little get away! 
At the end of genetics' appointment Dr. Ward and I were talking about the totality of this disease and how it's applied and affected our boys- at the end of our conversation he looked at Kadyn and said "Kadyn I'm just so glad you're here with us."  And on that note I fought back tears thanked him for his support of our family and we left.
So we're thankful for the teachers who gave their best and understanding.  For their coaches who pushed them and understood them and believed in them and are still working hard with them and us to keep them healthy.  To our families and friends who check in who take over when needed who love them so much - we couldn't do it without them.
Yes we're thankful we're blessed because like Dr Ward said- we're so very thankful they're here.

Dr. Ward is also the one who asked us if we would be willing to write into the department of health on passing the ALD newborn screening bill.  2 days after I posted about wanting to do a write up and send it with our neurologist abstract to submit - Dr Ward called and asked if we could go out to Pierre to speak to the Department of Health meeting on this bill.  So last Tuesday my cousin MiKayla Kadyn and I drove to Pierre and told our whole families story.  Lots of tears shed- and hearing other families stories was just heart breaking as well.  I ended my testimony stating "passing this new born screening isn't just helping the child and potentially saving their life but saving the lives of multiple family members.  This isn't just a one person disease it's a whole family and if we get this passed theirs other siblings aunts uncles moms dads grandpas grandmas that will also be saved and their quality of life made better. " I then looked at Kadyn pointed to him and he is here and was saved but my Uncle Terry isn't and we want to save other families from this heartache" It affects so so many and others there told their stories fighting tears and telling their losses of family members too.  When we know better we do better.  It was a great day to spend with MiKayla(Terry's daughter) and Kadyn- and so proud of both of them for making their presence and voice known to save others.  Terrys life was such a gift and it took 17 years of questions unable to be answered to finally have closure of what really happened.  I believe his hand was in saving Kadyn too. They vote on the bill April 15th and if it passes would start newborn testing as soon as May 1st.  We ask prayers that it passes and for the families affected.
As we start Holy Week I can't help but think how Jesus gave himself for us to save us from our sins and then rose again.  While we will fall short of our commandments at times, it's my prayer over this week that we reflect on how we are all saved.  Our second chance was already blessed to us- be kind love one another and remember your eternal life with Him because He saved you too.  Thank you Jesus for our boys and for our medical team that You continue to work through in their hands and hearts and minds to give us our temporary time with them that has been made longer and healthier and may they prosper knowing You had this journey for them all along -A calling you asked for a purpose greater than them.
Hug your kids -support them- love them
Gods richest blessings
Yesterday - Now- and in eternity