Time for an Update

Wow, it's been a few years since we have updated the blog. It's been a rollercoaster for sure. Linc will be 6 in April. He's in a special needs preschool in Marion right now and seems to enjoy it but we have to make a decision for next year on where to place him. I never realized we no longer have 'special needs' schools here.. they mainstream all the kids into regular schools which is not a great option for us. Marion has very few MH units in the districts and the ones that do are not what would work for Lincoln so it looks like he will go to our local school and be in a regular class with an aide unless some new options pop up before then. Luckily Greg and I both work at the school so that will be helpful. Lincoln has struggled with feeds so he is still dependent on TPN for 12 hours a day and feeding tube feeds for several hours a day as well. He has endured multiple surgeries and hospitalizations over the last few years. The worst was last summer when he spent the majority of the summer at Nationwide Children's Hospital. Finally released just to end up right back in there due to a gentimicin overdose due to a lack of communication with our TPN supplying pharmacy (yeah we switched immediately). That particular incident damaged his kidneys quite severely which resulted in adding in a Nephrologist to the mix of doctors we have to deal with. NOT FUN.. luckily is kidney numbers did gradually improve and we only have to see them once a year from now on. During that same hospital stay, after we went home for the night, he managed to pull out his central line that he had just had surgically implanted less than a week before. It was very tense waiting to see if we could manipulate the same site to have another surgery to place a new one since he is running out of central line access sites. Meanwhile he was tortured with finger pricks constantly and peripheral lines wherever they could stick one several times a week. Worst summer EVER... We did get lucky and the amazing surgeons were able to make it happen though. Big relief! TPN is what keeps him alive and if we lose all access sites for his Broviac (IV) we are in serious trouble. While he was in there over the summer he developed a super strange condition that no one could seem to figure out.. his lab levels were off the chart bad in several areas and he had bizarre body rash.. his fevers hit up to 105+ for no apparent reason and he was sooo sick... we were honestly concerned about losing him a few times. They finally contacted Cincinnati Children's and sent some blood to be tested and it came back as Macrophage Activation Syndrome. Rare, weird, life threatening disorder brought on by all his illnesses. So we test monthly for this to keep his levels in check.. when they start to rise we will know it's back and we need to be admitted asap. We are lucky though that we haven't fought that particular demon in a few months though. We just need to be sure we tell any medical professionals that we work with that he does have this unusual dangerous disorder so they have a heads up for treatment. Lincoln is still non-verbal but he is slowly making progress.... he says DUDDD (DAD), Ma'am (MOM), Brud (brother), and my all time favorite.. NUHHH (NO!). That one makes us laugh. He is hilarious and super sneaky smart. We warn our visitors he is a bit of a 'pick-pocket' lol. He will 'fall'into you like oopsy then you will realize whatever was in your pocket is missing.. usually a phone.. lol! We think he feels guilty though because in a few minutes he will usually come back over and give it back to you. Just last weekend during one of Ohio's frigid snowy days Greg and I stepped outside to check out the truck and realized mr. sneaky pants locked the deadbolt on the door.. the one we have no key for. Awesome! We go check sliding doors, nope both locked! Kept trying to explain to Linc how to push the locking handle down to unlock it, it can be tough to do... no luck. We walk around the house hoping to find an unlocked window while freezing and here he comes walking out onto the deck like 'hey guys whatcha doin??" so he DOES know how to push that handle down! So funny.. We made the risky decision to book a 5 day beach vacation for all of us in May.. risky because we never know if he will end up in the hospital during that time and we will lose our deposits but we decided it's worth the try. Sooo.. we found a gorgeous condo right on the beach in Myrtle Beach we are going to try out. As you know, Lincoln can not get in water or get his chest area wet which is very challenging but we think he will enjoy taking walks down the boardwalk and checking out the aquariums, museums, etc. Cole is bringing a buddy of his that is a super great kid so we have made a deal.. they do their thing and come back to watch Linc for a few little spurts (while linc is not hooked up of course) so Greg and I can go to the beach or something. We will see how that works out..lol. So keep your fingers crossed everyone stays healthy and NOTHING goes wrong that week! This would be our first family vacation since Lincoln was born and is long overdue :). We have had some nursing changes at home due to our long-time nurse getting her degree and moving on but I think it will all work out. We have a new day nurse that we really like so that's wonderful! We are happy to have the blog going again and to keep everyone updated on little Lincoln.. it always surprises us when people we haven't seen in a long time still ask about him. He's such a sweet happy kid and we appreciate all the prayers and concern for him. I will add some pictures soon.