Like A Boss

Korban is at an odd stage right now. Technically, physically, he is 12. He is a preteen. Mentally and emotionally, he is much, much younger in many ways. The best way I can think of to describe it is imagine raising a toddler who is roughly the same size as you. Korban is more advanced than a toddler in many ways, but he’s definitely still so impulsive, unreasonable,  and emotional and it’s not like I can just pick him up and tote him out of a store if things go south. He is making progress in so many areas but sometimes it just feels like one step forward and two back. 

This past Sunday he came to me while I was cooking breakfast and asked me to pull a wiggly tooth. He isn’t dramatic about pulling teeth thankfully, but he generally wants them GONE when he can feel them moving. I was elbow deep in biscuit dough and told him I couldn’t pull it right then and he accepted that and walked off. A few minutes later he returned, tooth in hand, and proudly told me he pulled that tooth “like a BOSS!” He sure did and we were all really proud of him and made a big deal out of it. I’m so glad he is starting to be more independent and can do things for himself. And then there was yesterday....

Yesterday afternoon Selah was sitting at the kitchen table working on her math, I had already started getting things ready for dinner, and Korban was in his room sitting on his crash pad, flipping through a picture book. At least that’s what he was doing the last time I checked on him. I was turned around to the sink washing a dish when I hear Korban’s voice behind me and he said “Hey Mom! I cut my...” Based on his history my mom brain is filling in blanks like “cut my hand, cut my arm, cut my ENTIRE LEG OFF!” So I spun around in a panic. Hair, y’all. He cut his hair. So on the one hand I’m relieved (very relieved) that there’s no blood and no injuries. On the other hand, my 12 year old now looks like Jim Carrey did in Dumb and Dumber. I did some deep breathing and told him to show me the scissors he used. He took me to his room and showed me a pile of hair on the floor. Hair that used to be on his head. He was so proud of himself and thought the whole thing was hilarious. No regrets whatsoever. I decided I need to step back for a minute and connect with Jesus so I left him in his room and walked back to the kitchen.

 Selah was making deviled eggs for her daddy. She is very good at that. She had broken one of the boiled eggs as she was peeling it though, so she was feeding it to her new puppy. Her new, not quite housetrained puppy. So I explained that probably wasn’t the best idea and as I’m going over that Jim Carrey Jr. pops back up in my kitchen and says “Look Mom, I cut it more!” I didn’t really think he could make it look worse, but trust me, he did. How did I not think to confiscate the scissors when I left his room? More deep breathing. My boy looks like this:

And again, he is still SO PROUD. He said “I cut my hair like a BOSS!” I’m thinking “Dude, have you seen your noggin? This is the opposite of a boss!”

 I didn’t say that out loud but at some point in all this he realized I wasn’t quite as thrilled as he was and he scooped a handful of his hair off the floor and said “Will you help me glue it back on?” I got so tickled at that and couldn’t stop laughing. But seriously, when he does things he doesn’t understand that they can’t easily be undone. 

We’ve had a long talk about how we don’t cut our own hair and how we go to the barber shop for that. Selah, who graciously offered to “even it up” herself, told him “Korban, you need a PROFESSIONAL!” 

Sister ain’t lying. He needs a professional. We are going to get his head buzzed this morning. Once he gets something on his mind he can’t let it go. He was still getting ahold of scissors and trying to cut his hair more last night. I had no idea we owned so many pairs of scissors. We apparently also need to own a safe to store them in. He also decided last night that since I wasn’t happy about the whole hair cutting business, he’d just fill in the bald spot himself. With a magic marker. I kid you not. 

I gotta at least give him credit for creative thinking on that one. And as one of my friends pointed out, he used two colors! Orange and green, maybe he’s getting ready for Halloween. Selah said he looked like a rock star and I thought about letting him rock this look until November. If y’all see me out and about with my kids looking any sort of way just pat me on the shoulder and pass me a coffee, please. 

My Easy Button Child

I say this with caution, because I don’t want it to seem like I am saying I love her more (I don’t) but Selah is a much easier child to raise than her brother. I can turn her loose in a playground without worrying she will run off or hurt another child. I don’t flinch when she raises her arm around me. She hit her milestones on point and communicates very well, which makes life a lot simpler. She’s gentle and compliant and wants to be helpful. And she’s also extremely funny and just a joy. 

My fear with her is that since she was so easy she would feel overlooked since Korban has so many needs. She doesn’t seem to feel that way, and we’ve tried really hard to make sure she has her own activities and we spend time just with her. That’s one of the main reason I homeschool her—so we will have a few hours out of the day just me and her. 

Selah always just seemed healthier and stronger than Korban did as a baby. She had her share of sickness like any child does, but nothing like what he went through. As he has gotten older his health has thankfully improved. He has primary immune deficiency, and required treatments for that until last year. He has been under close supervision from his immunologist, but his levels have stayed good and he hasn’t required additional treatments. 

Selah has actually been sick more than he has this year. A couple of months ago she was getting ready to go to her jiu jitsu class and she came and told me she didn’t want to go. Very unusual for her, because she loves jiu jitsu. I asked her why and she said her ear had just started hurting. Brad had to go to a board meeting that night so we decided he’d go early to take her to the urgent care clinic that was still open. We debated on taking her, but decided that she was probably getting an ear infection and didn’t want to put off having a dr check her. So they went on, and the dr said she definitely had an ear infection. Brad got her script filled and took her to his parents’ house while he went to his board meeting, which was just around the corner. They text him during his meeting saying she was inconsolable and they were worried. They never do that, and Selah is generally calm, even when she feels bad. Brad left immediately to go get her and found her screaming in pain. She was calm again by the time they got home but I figured I knew what happened. I looked at her ear and she had fluid and junk pouring out of it—her eardrum had ruptured. 

I took her to her regular dr the next day for confirmation. She even let me look at it. Selah’s eardrum was a raggedy hole. Ugh! We added ear drops and they scheduled her with the ENT. It was scary because it happened so fast. She went from perfectly fine, to “oh my ear hurts a little,” to screaming in pain as her eardrum ruptured all in a manner of hours. Her dr said it just happens that way some time. 

The ENT got her in quickly and said we’d just watch it, that they typically heal up on their own. Selah sighed and said “I’ve seen THREE doctors over this ONE ear!” Ha! We went back in a few weeks to the ENT for a recheck. Her eardrum was looking much better. The audiologist did a hearing screen, which she passed, so thankfully her hearing wasn’t damaged. 

The dr did say it was unusual for ear infections to persist in an older child. She had two sets of tubes when she was younger. He thought maybe it was allergy issues so he started her on Zyrtec. I explained about Korban’s immune issues and that during our genetic workup they found out I was a carrier for immune deficieny. He thought it would be best to have Selah tested so over the summer Brad took her to the local hospital and they drew some blood to check. She did not love that whole process. 

We went back to the ENT last week. Her ears looked great but the blood work showed that her iGA was low. He recommended we see an immunologist and referred her to the one Korban sees, whom we love. As it turned out, Korban was already scheduled for a checkup this week so they were able to add Selah on as a new patient and see both of them. Specialists hardly ever get somebody in that quickly so that was a big deal. Also, it’s about a 4 hour drive from our house so getting both kids seen the same day was a huge help. 

That all happened last Thursday. On Saturday night Selah said “My mouth hurts.”  I flipped my iPhone light on like a true Dr. Mama and shined it in her mouth. Her gum was all swollen up by one of her back teeth and looked red and painful. She said it had felt funny for a couple of days but it just started hurting. On Sunday Brad took her back to Express Care and got an antibiotic for her tooth, which was abscessed. I called her dentist first thing Monday and he wanted to see her on Thursday. They were able to do it at 9:00 in Oxford and then we would drive on to their immunology apt in Madison. 

Brad took off work to help and we all got up early and headed to Oxford. Brad, Korban and Jet went to get gas while I took Selah in to her dental apt. They wound up having to pull her poor tooth but she did really well. She cried a lot afterwards when the feeling came back. 

Look at that little face! I felt so bad for her. The dentist told me the roots broke off and he had to dig them out. When I was explaining this to Brad she overheard and said “What do you mean roots? I’m not a tree!” We cracked up. She settled down as we drove and was feeling much better by the time we got to Madison. 

We love our immunologist and the kids were glad to see him. He comes in carrying a basket of treats. Korban picked a water gun and so did Selah. I guess she figured she’d need to defend herself. 

Both kids did breathing tests. Korban couldn’t quite get the hang of it so we didn’t get test results for him. Selah did the test, took a breathing treatment, and then did the test again. She just needs a rescue inhaler because she wheezes when she gets exerted sometimes. Both kids also had to get blood drawn. Korban handles it like a pro now, which is probably a miracle. I can’t believe this is the same kid I used to have to sit on so they could get his IViG started. He went first to show Selah how it was done and she climbed up on the table beside him and held his hand. 

Isn’t that the sweetest? 

She was nervous for her blood work and cried a little. Brad asked if they had anything to numb it with and they had a cold spray. We called it “Elsa breath” and she thought that was hilarious. She didn’t want any of us to hold her hand while they drew her blood but she held her daddy’s elbow. She got her own style. 

We were there for several hours but the boys were quite chill. 

Selah was in a good mood despite all she’d been through. 

 After we finished the apt we went to eat at Chili’s. Selah had barely eaten anything all day but her mouth was feeling better and she ate really well. 

Obviously. 

We didn’t have time for a museum or anything fun, so I ran into Target to get them a treat off the clearance rack for being so good today.  I do love a good Target. I found this gem for Selah: 

No matter what kind of day you’re having, Star Wars always helps. 

She also got a squishy toy and a Little Mermaid fidget spinner. I got 0 pics of Korban’s happy, but he got tiny keychain flashlights which made him so happy he vibrated, a squishy ball he wasn’t impressed with, and a Funko Pop Supreme Leader Snoke that I scored for $2.48. Selah said he was ugly and Korban absolutely loved it. Yay for Target clearance! 

Selah’s a tough little cookie, animal expert, and the best sister ever. We should get our test results next week. Our little easy button could use your prayers and so could her big brother. 

For The Moments I Feel Faint

Korban started another school year (6th grade!!!) on Monday and is doing very well. He has a new teacher this year and new students in his class so I knew it would be an adjustment. He likes his new teacher a lot and one of the aides he is close to is still in his room so I’m very thankful for that. He was anxious to meet his new teacher at open house but once he met her he settled down and was excited to start school. 

Monday went well. I picked him up at 10:00 because we had therapy from 10:45-3 in Corinth and he’d done well and had a good day. Tuesday he was scheduled until 12:00 and was supposed to eat lunch in the cafeteria. That was a huge deal to us because he has not eaten lunch in the cafeteria since his kindergarten year, and it was a huge trigger for him then. Sometimes he would scream in the cafeteria, or act out, but a lot of the time he would hold it together until they got back to the room and then lash out at anyone and anything. He threw a chair across the room one day after lunch. It was major. So that was when things were so bad we did homebound for awhile and his teacher came to our house three days a week and the other two days I took him to the school and stayed with him while she worked with him one on one. We did that so he would still remember the school and be in a routine of going so that we could slowly build back up. 

Those were really hard times but the school really stuck with us and his teacher was amazing. He had his own little room at the school that we worked with him in and I remember one day he got really upset with little warning and suddenly turned and clawed my cheek so hard blood started running down my face. I was generally pretty good at being stoic but that day I burst into tears and ran and locked myself in the staff bathroom, leaving his teacher to deal with my screaming child. She handled it like a boss and still loves me so it’s all good. But until you’ve locked yourself in a bathroom at your kid’s school sobbing and bleeding you don’t know the struggle. (His teacher also knew this struggle. She got more than her share of scratches and bruises and somedays I would pick him up and wads of her hair would be in the trashcan from him pulling it out. It was a dark time.) 

I said all that to say, we’ve come a looooooong way since then, thankfully. We still have our struggles of course, and some days are harder than others but progress is a beautiful thing. When I went to pick Korban up Tuesday, the principal waved me into her office and was so genuinely excited because she had seen him in the cafeteria holding his tray and acting all calm and grown up. I could’ve cried. (But in a good way, not a lock myself in their bathroom kind of way.) 

I got him from the aide  and she said he did great. He ate his chicken quesadilla and asked her for another one. Ha! I had written a note explaining that it could go one of two ways—either he wouldn’t eat anything or he would eat it all and ask for more. I told them if the latter was the case to just tell him mom had more food at home. She told him just that and he was fine. He also ate his chips and salsa from his tray at school and drank his milk. And he ate again when he got home because he’s a hobbit. Brad said “We need to explain to him that the school cafeteria is NOT a buffet.” We’ve laughed so hard about how things have changed and how once he remembered they had food up in the school they may not be able to get him to do anything else.  

He did well at lunch on Wednesday too, although he didn’t eat very much. That’s definitely ok because it’s not like he’s malnourished or anything. He did get cranky with me when we were trying to leave because he wanted this pencil he had left in his room. He loves to sharpen pencils down to nubs and then hold onto them. I was trying to tell him to leave that in his classroom because he had one at home he’d brought from school the day before. He got pretty loud in the hallway but he finally settled down and left with me. On the way out he said “CAN I CUSS?” Dude, no. 🤦‍♀️😂 I told one of my friends about that and she laughed and said that might be her new motto. (For anyone who’s wondering, he knows exactly two cuss words that he periodically belts out and embarrasses the mess out of me, so at least he asked that time.) 

Today they contacted me to say he was really overstimulated and they weren’t sure he would do as well in the cafeteria so I made the decision to go on and get him. I want to set him up to succeed and not put too much on him. If he was already struggling, no sense in ruining a good thing. I told Brad the other day that I feel like we are constantly walking a tightrope between not holding him back and underestimating him  and pushing him too hard. But I feel like between the two of us we balance each other out fairly well and get fairly close to a happy medium. I hope so anyway. 

So I picked him up and he really was overstimulated. He was trying to wiggle out of his seatbelt and lay down in the backseat and just being wild. He kept aggravating Selah and being loud. I finally got him settled down and got both kids lunch and then finished up Selah’s schoolwork for the day. She had an appointment with her ENT at 2:00, and Korban was going to stay with his Mamaw while I took Sis to the dr. I had fixed myself a cheese quesadilla for lunch but let it sit on the stove and get cold while I finished lessons with Selah. I figured I better scarf it down before we left so I asked Selah to walk her dog Roxie in the back yard while I ate. 

I took my food out on the porch so I could hear them. Korban asked if he could walk with Selah and she said yes and I did too. He had calmed down considerably. They walked behind the house and I sat on the porch and munched my quesadilla. In a few minutes Selah rounded the corner and said “Mom, I think you need to come look at Korban.” 

I should mention that last week we had to have our septic tank replaced. So there was a lot of dirt in our backyard. It’s been pretty dry but we had a big rain this morning while Korban was at school. I wasn’t thinking about any of that when I turned the kids loose in the backyard. I was just thinking about lunch and getting on the road. I rounded the corner and saw this. 

Can someone make me a shirt with “CAN I CUSS?” printed on it? 😂😂😂

I made him strip down on the porch and then I gave him a good scrubbing in the tub. Even with that I still managed to drop him off (clean!) with his Mamaw and make it to Selah’s apt five minutes early, which is a miracle. I guess we got bath time out of the way early today. 

Today was a bit of a setback, but I’ve made it through much, much worse. The aggression and self harm was honestly the hardest thing we’ve ever dealt with and I’m so thankful that has been loads better the past year. His aide saw I was concerned today when I picked him up and said “Oh don’t worry, it wasn’t like it used to be.” Whew! I felt like I could breathe again. 

What some people don’t understand is sometimes you can work and work and work and still only make limited progress. It’s both exhausting and terrifying, to give your best and it not be good enough. He was diagnosed with autism at age 3 but he started therapies like OT and speech when he was two. He started getting ABA (behavioral therapy) when he was six through the school. Before that I drove him back and forth to Tupelo to the Autism Center for ABA several time a week for close to two years. We do prescription medicine and alternative treatments like supplements. We have a service dog. We work hard.

 

Just an example—Korban has this horrible, ear splitting scream he does when he’s upset. I’ve never heard anything like it. If you heard it out in public you would immediately notice and be alarmed. And he’s done it in public plenty of times. Six years we’ve worked on this behavior with his therapist. Six years of saying that if he had to scream he could scream in his room but no where else. Six years of trying to give him other ways to cope. And after six years, this summer he got upset while we were out and looked at me and said “Can I scream in my room when I get home?” I said sure and he went on and managed to stay composed. He’s done that several times since. Sometimes he is fine by the time he gets home and sometimes he does go to his room and scream. But either way, I applaud his self control. I don’t mean he’s only been doing this particular scream for the past six years. He’s done it since he was about 18 months. I just mean we had tried other things that the dr who diagnosed him recommended, such as ignoring it and waiting for him to stop the behavior. Never did any good and if you heard him do it you’d swear he was dying and not just angry that his favorite flashlight needed a new battery or something. I mean we’ve been dealing with that behavior for over a decade, but we finally got behavioral therapy six years ago when he started school and have been working with a behaviorist to help him find better coping skills since then. 

Setbacks are hard sometimes, but he’s doing well overall and I am so so thankful. Some days are gonna look like this: 

While other days look like this: 

But either way, it looks better than where we’ve been. 

Because I Love A Good Deal

I consider myself a very frugal person.  I mean, I kind of have to be. I stay at home with the kids because I love it and because we can’t afford to pay anybody to do all that I do, but I’m not bringing home an actual income. Brad works super hard but mental health workers in Mississippi aren’t exactly getting rich. But we have all that we need and a lot of the things we want, we just have to be careful. And we are pretty good at being careful. 

So today I ran in one of my favorite stores, Dirt Cheap. They had a rack of clothes for $1.00. Clothes for a dolla? Sign me up. So I found Selah a Minions dress, a Minecraft t-shirt that glows in the dark, and a Halloween shirt that says “I love candy,” for when that time comes. Korban got a Darth Vader t-shirt (and as a bonus he and I wear the same size shirt now, so I can steal it!) Also, I found myself two cute dresses. 

I love wearing dresses in the summer because you don’t have to match top and bottom, you just put one thing on and bam, you have an outfit! But mostly it’s just because it’s too hot in the South to wear pants. One of the dresses was actually long sleeved, so I don’t plan on wearing it right now, but I figured that once fall got here, I would be happy I had it and Selah’s Halloween shirt. Also, it was a size smaller that what I normally wear, but the waist wasn’t fitted at all so I figured for $1, what could go wrong? 

After I left Dirt Cheap, I went to meet Brad. He had taken the kids to therapy this morning and I had to get Selah from him to take to another apt while he took Korban to ABA (behavioral therapy.) When I met them, Brad saw the sack on the front seat and asked what it was. I told him clothes and he was all like “Don’t be getting crazy with the spending!” and I was like “Dude, seriously. Did you forget who you are talking to? That sack of clothes cost $6!” and he was all like “BUT STILL!” 

So anyway, I got Selah and took her on to her apt. I had a few minutes to kill while I was waiting on her to be finished so I ran in the library. Let me preface this by saying I’m honestly not much of a clothes and shoes shopper, but I’m pretty much obsessed with books. So I go in the library and wouldn’t you know, they’re having a book sale and there’s a sign saying “Fill a bag with books for $2!” So of course I’m like “Wow! I need a bag!” I was expecting like a small grocery store bag, and that would’ve still been a good deal. But no, the woman gave me a giant bag from (of all places, if you’ve read this blog) CRACKER BARREL! Brad’s wife is loose in the book sale with a Cracker Barrel sack. Best Monday ever! Here’s my bag of books: 

Isn’t it fabulous? I got 33 books for $2. 

Summer reading here I come! 

So then I pulled out the clothes and looked at them and the books and thought “I got all this crap for $8!” I showed Selah her new clothes, and she loved them. Brad and Korban were still at therapy, so it was just me and Selah at home. I decided I should try on my dresses. 

Now the fall dress looks like this: 

Perfectly innocuous looking dress, right? I pull it on and it fits. The shoulders feel a bit tight but all the buttons fasten with no problem and it feels fine and looks okay. I’m good to go—until I try to take it off. The shoulders are SO tight I don’t have enough wiggle room to take the dress off. So I call Selah to help. She’s not tall enough, so she stands in a chair and tries to help me pull it over my head. No luck, so then I try kneeling in the floor but she still can’t get the dress off of me. Being stuck inside clothes is the worst claustropic feeling so by this time I’m laughing hysterically and also totally certain I’m gonna die in this dress. I’m just hoping at this point that Brad’s next wife is frugal because he has no idea how much normal people pay for stuff and that she has better taste in clothes than I do. 

I had no idea how much longer it would be before the boys got home. Selah suggested cutting the dress of but I said “No! That would ruin it. I still want to wear it.” She said “Why would you want to get back IN it after you manage to get OUT of it?!? Which is a pretty solid point from the eight year old. She then asked if I wanted her to dial 911 but I noped out of that one real quick too. 

I did like the idea of calling for help though, so I called my mom instead of emergency services. She lives around the corner, which comes in handy in situations like this. I asked if she was busy. She said no, so I told her I was going to come over and show her something. I loaded Selah into the car (I can move fine in this dress as long as it doesn’t involve raising my arms above my head) and we head out to my moms. Selah offered her services and asked if I wanted her to use my phone to video while Nana got me out of the dress. Yet again, my answer was a big NO! 

We went in my moms and I said “Hey look, I got a new dress!” It was pretty obvious it was new because I hadn’t even bothered to cut the tags off of it yet. I explained that it cost $1 and “It even has POCKETS!” (Dresses with pockets are the best. Except for when you get stuck in them.) Honestly my mom didn’t even think anything about me showing up at her door with a new dress with pockets and the tags still on it, because I’m really random like that but then Selah was like “Yeah, she’s stuck in it.” And my mom yanked the dress over my head and saved me just as soon as she got done laughing. 

In hindsight, maybe cheap dresses aren’t always a great deal unless they are exactly your size. Even if they do have pockets. But I have to say I’m very glad I didn’t try it on in the store. No one at Dirt Cheap gets paid enough to bust me out of a dress I’m stuck in. Maybe my shoulders will shrink by this fall. My thoughts and prayers go out to everyone shopping for summer clothes. 

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! 

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 

exhibit. 

Birdwatching! 

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. 

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.