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Wednesday, March 23, 2016

Kicking Off Autism Awareness

Last year I wrote a blog about attending the Light It Up Blue pep rally at Hernando High School and their Bolt for Blue 5k. The students and staff at Hernando High are an amazing group of people and we really enjoyed that time. They helped us raise the money to get our sweet Jet and it really touched us in a way that's hard to describe.

To read the blog post about last year's Bolt For Blue click here

We took a lot away from that event, and Brad's brain went into overdrive which is always interesting. Ha! He's a planner and a doer, and he appreciated what they did so much he wanted to be able to bring something similar to our community. He put his head together with some coworkers that have kiddos on the autism spectrum as well, and Reconnect 4 Autism was born. We kicked off autism awareness month with Bolt for Blue and closed it out with the Reconnect 4 Autism color run. April 2015 was a very big month for us! 

The funds raised from the color run were used to start sensory friendly family outings in our community.  This is the only fundraiser done by the group.  We've done monthly sensory movies (lights up, sound down, kids free to move about, etc), had a cookout, a pool party, playtime on jumpers, family get-togethers, costume party, and had a blast doing it all. It's been great being with people that understand where we are coming from and I love seeing families get to come and participate in events that they might not normally be able to do. Planning for the second annual color run is in full swing, and we are all looking forward to a year of more sensory friendly family activities. Please plan to join us if you can! 

What the people in Hernando did for our family meant a lot to us and will be with us forever.  They played a big role in Korban getting his service dog, Jet. This was our way of paying it forward the best way we could. I think of it like the ripple effect; like when you toss a stone out into water and see how far the ripples radiate out from it. So let's cast those stones in a good way and see what we can do to bring some positivity to our world!  Autism awareness turning into acceptance from one side of Mississippi to the other and forever connected.

For more information about Bolt for Blue, or to register for the run go here:
Light it up Blue Hernando Facebook Group
Bolt for Blue 5K Registration

Check out Reconnect 4 Autism here and sign up for the second annual color run here:
Reconnect4Autism Facebook Page
Reconnect4Autism Website
Reconnect4Autism Color Run Registration


Thursday, March 17, 2016

Changes Ahead!

We have been doing Korban's IViG infusions in Birmingham for 4+ years now. He was diagnosed with a primary immune deficiency when he was 4 and started the infusions when he was 5 after prophylactic antibiotics and other treatment measures didn't help. 

Driving to Birmingham every four weeks to hold him down for an IV hasn't been easy but it's kept him so much healthier than before, so it's definitely been worth it. We've made the best of it and have been so thankful that treatment is available and that we were able to get it. 

We've been worried about him for a little while because he tires out so easily and we can see the infusion "wearing off" at the end of the month. He gets really pronounced dark circles under his eyes and doesn't want to do much at all. Our family, his teacher, and all his therapists can tell when it's time for his infusion.

 We had a checkup with his immunologist a couple of months ago, and we told her what had been going on. We asked if his dose needed to be increased. He has grown an awful lot! (Nearly as tall as me and weighs 94 lbs. Whoa!) She explained to us that a clinical study was becoming available and thought it might be a good fit for Korban. Rather than getting his infusion once a month he would get a weekly treatment. Instead of having to get an IV, he would get a subcutaneous infusion. That means they would numb his skin with EMLA cream and he would have several small butterfly needles inserted under his skin on his belly and the medicine would go in that way. The weekly treatments will keep his levels higher and we shouldn't see such a slump at the end of the month. Also, Brad and I can get trained on this and start doing it AT HOME!  So we met with the nurse heading up the trial and did a bunch of bloodwork and tests on Korban and a lot of paperwork these past 2 months.  Thankfully Korban was accepted for the clinical trial!!! 

His first subcutaneous treatment will be  Friday. We go once a week for a month, which will be hard, but after that we should be able to start doing them at home and we will only have to check in at UAB every few months. We have worked closely with the nurse that is over this clinical trial for the past couple of months and are excited to get going. 

We've talked to Korban about it and he seems to understand and be okay with the change. He's pretty excited about the "butterfly needles" as opposed to an IV. Although I have to say, he's done better with his IV the past few months than he's ever done! 

We think Jet has had a lot to do with that! He's a big comfort to Korban. (And also a good foot prop! Lol) 

So a couple of concerns/prayer requests:
1) Like I said, Korban seems to be ready for this and we've done our best to prepare him, but despite our best efforts we never know what his reaction to a certain situation will be until we are actually in it. The goal is for this to be LESS stressful for him, so please pray for a smooth transition. 

2) If you had asked me 10 years ago if I thought I would ever be able to put a needle in somebody and give them any kind of medical treatment, my answer would've been a resounding "NO!" I mean, I am the one who fainted straight into the floor at my OB's office over a simple blood draw when I was pregnant with Korban. So very embarrassing! I haven't done very well with blood and related things in the past, but that was me before. I also didn't do well with frogs and lizards and such as that, but I sure have come a long way. I feel good about this, and I want to be able to help Korban       We never know what we are strong enough to do until we actually need to do it, so I've learned not to say "I could never..." That being said, I am a bit nervous so please pray for calmness and steadiness for me and Brad both. He's typically very steadfast in such matters and I'm so grateful for that character trait in him! But he won't always be there when Korban needs it done so I need to be proficient in it. Please pray for steady nerves, steady hands, and NO FAINTING! I'm pretty sure I'm past that. I'm glad spring is coming though. I may need to go out and catch some frogs and lizards just to remind myself what a tough mama I've become. ;)