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Wednesday, June 14, 2017

That Time We Cracked Out And Cracked Up At Cracker Barrel

We headed down to Jackson, MS for the disAbility Mega conference Wednesday morning. We took this picture before we headed out.

 I was really happy because Korban let me rest my hand on his back for the picture, even though he wouldn't stand very close to me. I mentioned in a previous blog how he is going through a period where he can't stand for anybody to touch him or stand close to him. Remember that, because it's going to be real important here in just a minute...

Brad's parents asked to go to the conference with us and we were able to make the necessary arrangements for the conference. We were excited because they haven't gotten to go on a trip together in a very long time and we have never been anywhere all together. I was really hoping they could relax and enjoy themselves and it would be a good trip for all of us. The kids were excited to go. This is the third time we've been to this particular conference and our first time to speak at it. We are speaking Friday morning about autism and service dogs. 

We decided to stop in Tupelo to eat, since we were hungry and it was lunchtime. We chose Cracker Barrel. It was actually my idea I believe, because I am a stubborn individual who does not learn from her mistakes. (Again, more about that later.) 

Now I know most of you have probably eaten at a Cracker Barrel, so you know the experience of walking in through the country store crowded with breakable merchandise. I thought we could make it past that. What I failed to take into consideration was the crowd of breakable PEOPLE that might be in there. Shall we say that Cracker Barrel appeals to the um, geriatric population? 

So in we go with Korban securely tethered to Jet and the rest of our little entourage following along. Not only is the little store packed with all the things, it is also packed with people. Old people. So many old people. Brad was handling Jet, and he deftly led the boys through the perimeter of the store, following the path of least resistance. We navigated that successfully but then it was time to wait at the hostess stand, along with a crowd of other people. And Korban was not having it. He took one look at all those people and instant panic set in. "NO!" he wailed "NononoNOOOOOOO!!!" By then everyone was looking and I knew we needed to make a hasty exit. The problem was we were literally hemmed in on every side by all these sweet, fragile elderly people and since teleporting isn't an option (although for autism families by golly, it should be) we were just stuck. Korban's screaming and trying to bolt but he can't because he's attached to Jet. Every time I reach for him he screams louder and jerks in the opposite direction. I finally just grabbed a fistful of his shirt in each hand, figuring it was better than touching his skin, and started hauling him in the direction of the exit while Brad and Jet propelled him from the other side. We said excuse me a bunch of times and I frantically prayed he wouldn't inadvertently cause someone a broken hip. Finally we were in the sunshine, looking at a sea of wooden rockers, which we collapsed gratefully into. 

I offered to run Korban through a drive through while the rest of the family ate inside Cracker Barrel, but Brad just rolled his eyes at me. Actually he rolled them twice, because he was wearing sunglasses and he took him off to make sure I got the full effect the second time. As we were leaving a lady came outside and asked me if Korban was ok. I told her yes, that he just panicked because of too many people. She said her neighbor has two children with autism and she understands. Hugged me and told me she hoped he felt better soon. In case you ever need to how to react when someone's child has a meltdown in public, her reaction was pretty much the epitome of the best possible reaction. 

We decided we should just go through the drive through at Chik Fil A and be on our way. (I love you, beautiful chicken manna from Chik Fil A.)  The rest of our family loaded up and me and Brad stood at the back of the van and looked at each other. It was one of those "are we gonna keep moving or find a hole to lay low in for awhile," kind of looks. After a minute, he said "Bless 'em, they were TRYING to move out of the way. They weren't stopping to stare and be all judgy, they just couldn't get out of the way fast enough." I sighed and said "I know. I'm really glad he didn't push anybody." Brad said "did you see that one fella? He hitched up his pants so that he could move faster!" *Brad hitches up his khakis and rapidly shuffles across the parking lot to demonstrate* I couldn't help it, I started laughing. "And there were three little ladies all yanking on each other and trying to run away in different directions," he went on. I was totally cracking up by this point. We sure caused a scene. 

And that made me think of the last time Korban flipped out at that same Cracker Barrel. I hadn't thought of that incident in ages, and if I had've I probably wouldn't have been so quick to suggest it today. Korban was around 6 and we stopped by after a neurologist apt in Tupelo. It wasn't even that crowded but he was really antsy and threw one of those peg games. I got super worried because they have those oil lamps on the table too so we beat a hasty retreat before we even ordered. He was small enough then I could still scoop him up in my arms and hustle with them, but he was fighting me that day. He managed to hook his fingers in my scoop neck shirt AND my bra and jerked it down, causing me to flash everyone. And then when we got out to those lovely rocking chairs, he treated all the folks sitting out there to the same show! So yeah, it's probably a miracle they don't have a poster up with our faces on it saying "Do not let these people come in." 

I relayed that story to Brad and it was his turn to crack up. We agreed that at least I kept my clothes on this time. And then I remembered that whole controversy about Cracker Barrel firing Brad's wife, and I am also Brad's wife, so we laughed about that for a while too. 

If there's one thing I've learned, if there is anyway at all, find the humor in a challenging situation. Laughter will carry you through some tough times and I ugly cry anyway, so I'm really doing the world a favor. Look for the kind people like the lady who went out of her way to show us kindness.  And every single chance you get,  BE that kind lady. 

We still haven't made it out of northeast Mississippi, so if you pray now would be a good time to do so. ;) More updates coming soon! 

Tuesday, June 6, 2017

Immunologist Apt

So here's the deal--We had Korban's immunology apt first thing this morning. We met with two different doctors and they conferred over Korban's case. He has to be off of his treatments for three months. This will give the infusions time to clear his system and will let us know if he can produce immunoglobulin on his own. We will go back in September for a check up and labs. If the bloodwork shows that his levels are good, we can stay off the treatment. If his levels have dropped, we will start back on SCiG treatments through Batson instead of UAB. So three months off of his treatment, plus waiting several weeks on all the lab tests to come back, then getting back started on SCiG and waiting for it to get back in his system good since we are starting over...if he does need it, it would be Christmas at least before we got him back healthy. I'm trying to think positively that he won't need it, but I honestly have a lot of anxiety about this. The Drs understood this and did tell us to call if he starts getting sick before then and they will reevaluate. Basically, as far as his insurance is concerned, he's starting over and we have to prove there is a need for his treatments. 

On the one hand, I'm pretty excited thinking that there's a chance we won't have to do treatments every week or every month for the rest of his life. But I'm just scared he will get sick. I keep going back and forth in my mind. They told us this is the best time to do a trial like this because there isn't as much sickness circulating in the summer. They did tell us to avoid water parks and the lake though. Too many germs there if his immune system isn't functioning as it should. I worry about staph a lot because he always has open sores due to his skin picking, and they looked at all that today. It's just scary. 

So basically we go home and wait. I think about how much work IViG and SCiG was, but it was so worth it. We've had the best year yet health wise this past year. It was so hard when he was little and sick all the time. We hardly ever got to go anywhere or do anything. Lots of frantic middle of the night ER trips with asthma attacks. Before he was diagnosed his pediatrician told us to just keep him home for a couple of months to see if he we could get him to well. My parents kept him at our house during the day because I was still working then. When me and Brad got home from work we immediately changed clothes and scrubbed up like a surgeon before we even touched Korban. We took turns going to church on Sunday. It was tough but we just wanted him healthy. All those precautions and he was STILL sick all the time. Always worrying. Once we finally knew what we were dealing with and got him somewhat healthy, we tried to make up for lost time. But he is older and stronger now, and his communication has improved a lot, so hopefully he can tell us if he feels bad. 

We will see how it goes. Thank you all for your thoughts and prayers. Please keep them up! We are hoping Korban exceeds our expectations health wise and that Mom and Dad don't get too anxious. 

We used our Pink Palace membership to get in the Museum of Natural Science for free as a treat after the apt. We always love going there. As an added bonus, today was snake day and they have a dinosaur 



Korban was apparently pretty excited to see this dinosaur. Ha! 

Selah got to pet a rat snake. 

And a turtle! 

Jet was good and never makes a peep; however, Korban randomly barked at some people and startled them. 

Monday, June 5, 2017

Immune Deficiency Update

Just in case you didn't know, or didn't remember, Korban was diagnosed with a primary immune deficiency back when he was 4. He had been sick SO much and we'd had some pretty good scares. When the results of his bloodwork came in identifying the immune deficiency, his pediatric immunologist at Blair Batson in Jackson was on extended medical leave, so his pediatrician referred us to Children's of Alabama in Birmingham (at UAB). 

We saw his immunologist there for the first time when he was 4. She's always been great to us. She started off treating him with less evasive treatments such as prophalactic antibiotics but it didn't work and he was still sick a lot, so we moved on to the IViG. Every four weeks we would drive to Birmingham (about a three hour drive from our house) to get him hooked up to an IV so he could get an infusion of blood products that had the immunoglobulins that his body wasn't producing in it. This took several hours and getting an IV in him wasn't fun, but he was finally healthy so it was definitely worth it. 

We did IViG (intravenous immunoglobulin) infusions in Birmingham from the time he was 4 until he was almost 10. We started having trouble getting our insurance to cover the out of state treatments, even though Blair Batson in Mississippi is even further from our house (over 4 hours). Korban's immunologist at UAB told us about a research study that Korban could participate in and we opted to do it. It was SCiG (subcutaneous immunoglobulin) so his treatment went in through three little sites on his belly instead of through a vein. Brad and I were trained and did it three weeks out of the month at home and went for a checkup at UAB the fourth week. 

We've been in the study for about a year and a half and Korban has tolerated it very well. It's much easier than getting the IV's and his levels have been wonderful. We thought the study was going to be extended and we would only go to UAB every few months for checkups but unfortunately we found out a few weeks ago that the study was ending abruptly. Once the meds we had ran out, there would be no more. We had two more doses in our fridge when I got the call saying the study had ended. 

It wouldn't have been such a big deal but UAB no longer accepts Korban's insurance (MS Medicaid through SSI) so our people in Birmingham were scrambling to get us in somewhere that could help us. They referred us back to Blair Batson, so we've basically come full circle. Batson initially said they couldn't get us in until August, which panicked me because that is a long time to be without a medicine he needs to take every week to stay healthy. 

So then his dr and nurses sent a referral to home health to see if they could start seeing us and shipping Korban's meds to us. Still waiting to see if his insurance will approve that. In the meantime, Brad called Batson Friday and they told him they could get us in Tuesday at 7:45. So we are driving down tonight to stay in a hotel so we can be there for that apt first by tomorrow morning. We don't even know for sure which dr we will be seeing, they told us it would be whichever immunologist is on call, but we don't care. We are just thankful they could work us in. 

Korban however, doesn't understand why we can't keep going to UAB like we've been doing every month for the past 7 years or why he didn't get his treatment this past Friday. As you can imagine, we've gotten pretty close to the people at UAB, especially the ones doing the research study. They worked so hard to earn Korban's trust, which isn't an easy thing to do, and he loved them. We all did! I know Batson has good people, but change is HARD, especially with autism. When Brad took Korban for his final visit at UAB last Friday, he wouldn't even tell them good-bye. He didn't accept or understand that he wouldn't see them again. 

We aren't sure if this dr will want to continue the SCiG or try him off of it and see how he holds up. It's scary for us because he only missed one month during his time on IViG and it was because we couldn't get the insurance approval. That was a rough month. He didn't feel well and was super ill because of that. His levels had started dropping so they said then it didn't look like he was outgrowing his immune deficiency. (That is possible. The only way to know is to stop treatment and see if he gets sick.) We have mixed feelings about that. We hate seeing him sick and we know what happened last time he missed a dose. But we don't want him to be on any medicine he doesn't have to be on. There's also the third (scariest) option, and that's that he still needs the medicine but we aren't able to get it because of insurance. It's crazy to me--if at any point
in this whole journey with his immune deficiency we had said "You know what? It's just too much. We aren't going to drive all this way and hold him down for an IV. Bye bye now," they would've likely reported us for medical neglect, and rightfully so. But if insurance decides they don't want to pay for his meds, boom, that's it, you have a sick kid and that's that. I'm not complaining or asking for pity--I'm just telling our story. There are a lot of families in much worse shape than us. I know because I've been in plenty of dr's and hospitals and I've seen them. But it bothers me when insurance companies either can't or won't take care
of people and then I scroll through Facebook and my friends are ranting about all these families getting a free ride on government programs. I left my job to come home and take care of my child with special needs, my husband has a master's degree and works hard and we pay taxes like everybody else. I'm not going to argue on Facebook or anywhere else but sometimes I think people forget they are talking about real families, real people, and they don't understand the full scope of their situation. I know there are people that abuse things, but there are so many that don't. 

Here's my real little person and we are going to do whatever we need to take care of him. Please pray for safe travels for us and a good outcome to our dr visit in the morning, whatever that may be.