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Friday, July 25, 2014

Bouncing back in B-ham: the highs and lows

Korban seemed to bounce back fine physically from getting his infusion, but there were a lot of highs and lows the rest of the weekend. We did some cool stuff that we really enjoyed but Korban struggled pretty hard at times. Lots of anxiety, stims, obsessions, lots of skin picking, and some aggression. 

We stayed the night at the Ronald McDonald House after his infusion like we normally do. Korban woke up around 6:00 Saturday morning and giggled hysterically and was just really wild and out of sorts until around 9:00. A group came in and fixed breakfast for everyone and Brad took Korban down to eat. It was cool because he had polished off all the blueberries that I brought with us the night before and was asking for more, and this group brought a big fruit tray with lots of blueberries. Korban ate a good breakfast and I was happy about that. 

After that we took the kids to the Birmingham Zoo, complements of the McDonald House, for a little while. We just love that zoo and we had a nice time there. 

This guy was a big favorite! (Literally!)

He was right up against the fence, and Selah just sat and talked to him. 

"Mama, can I pet him PLEEEASE?!?"

Such a cutie, but the answer was "NO!" 

Selah brought her Sprite in and enjoyed it. 

But she was willing to share!  

Glad Selah wasn't able to pet this fella. ;)

"You sleeping, bear?" 

This is what happens when you forget the stroller and a little girl needs a break. 

Got to visit her flamingos!  

Korban didn't want to leave so I got hit a few times on our way out but it wasn't as bad as the day before at the McWane, so that's good.  We lured the kids away from the zoo with the promise of ice cream. Brad saw where Whole Foods was having a free ice cream social and giving away samples of different kinds of ice cream. We enjoyed that. The ice cream was healthy and really yummy!  

After that we stopped by Birmingham Botantical Gardens. If you are ever over that way, definitely check that place out. It's open year-round, totally free and very beautiful. We didn't stay very long and probably didn't see 1/4 of what all they had, but we plan on going back!  I got some pretty pictures of the kids:

This sculpture was an Eagle Scout project. The kids loved if and Brad and I were impressed too!

The kiddos appeared to be tiring out (see above photo) so we decided to go back to the Ronald McDonald House to rest. Korban repeatedly asked if we were leaving throughout our visit so I dreaded telling him that it was time to go. Thankfully, there was no aggression this time around, but he introduced us to a bizarre new behavior. I thought everything was going fine, but when we got to the parking lot, he jerked away from me, ran a little ways, flopped down in a mud puddle and rolled in it. I was like "Really?!?l Then he remembered he doesn't like getting wet and cried for his clothes to be changed. We try to carry extra clothes with us everywhere we go so I changed him before he got in the van. 

We took some time to rest at the Ronald McDonald House before heading out for Korban's big weekend treat. The Birmingham Barrons do a lot with the Ronald McDonald House.  The first time we ever stayed there we got to meet the Barrons and got an autographed ball. It was so cool. They also donate tickets to the Ronald McDonald House and we were given tickets to Saturday night's game. Korban had been asking to go to a game (we could see the stadium from our room) and we were so excited to be able to take him. 

After having some down time, we headed out to the stadium. We decided to walk. Selah insisted on carrying her stuffed pug Oscar--named after my friend Carla's real live pug Oscar--and she spent most of our walk clutching Oscar's tail in one hand and eating a big, fresh peach from her other hand. 

It was a good walk. Korban was happy to get to the stadium, but also nervous. We were just happy to be able to go, and I hadn't given any thought to where our seats would be at. We couldn't believe that they were on the first row right by the visiting team's dugout, behind home plate. They were awesome seats!  It was so cool. 

Also, it was jersey night and both the kids got free jerseys!  

Selah let Oscar wear hers. 

They were actually playing the Mississippi Braves, which was an added bonus. We've been to a couple of their games several years ago when Korban had frequent appointments at Blair Batson in Jackson MS, and we always enjoyed seeing them play. 

Korban always sits well during sporting events, which makes us proud. It helps that it has his own seat to sit in, so he knows where his space is. He also truly enjoys watching most any sport. He was anxious and picked his skin a lot but he was able to enjoy the game. 

Happy, sports loving boys!  

Family photo op!  

Selah passed her time playing with Oscar as she enjoyed the game 

I think she's trying to teach him to fetch a baseball...

Speaking of baseballs, both my kids were given a baseball. The M-Braves coach tossed one over for Korban and gave a big thumbs up. A guy on the field crew said he felt bad that Selah didn't have one so he took care of that. So sweet of both of them.  After the game, when the M-Braves walked right past us we were able to get some signatures. 

Wasn't that nice?  Notice Korban picking with his left hand as hands the ball with his right...even when having a moment of fun the anxiety is there.  

We really enjoyed ourselves and it was nice to be able to treat the kids to some fun things after having such a rough time with the infusion the day before. I've said it before and I will say it again--the Ronald McDonald House has been SUCH a blessing to us. It's just nice to have a place to rest before and after his treatments and it's great that different volunteers provide meals and fun activities for the kids. As always, our hope is that the kids will remember the fun things we did and not dwell on the hard parts. 

That's a pretty good philosophy for life if you think about it. This weekend was full of ups and downs but we will try our best to be strong through the hard parts and enjoy the good times. 

Sunday, July 20, 2014


Korban's July infusion was this past Friday. On Thursday afternoon, my mom watched the kids for me so I could get things packed and we could leave when Brad got home from work. Now let me just say, I come from a long line of worriers and my mom always worries about us whenever we take a trip. Sometimes this manifests itself in unusual ways. This time for example, she called me and by way of greeting she asked "Do I need to go to the store and buy Korban some new socks for his infusion?" I was momentarily taken aback and wondering if perhaps a new type of sock that would make infusions easier had flooded the market. So I asked her why, and she said "Well, he took his shoes off over here and there are holes in his socks and I was wondering if you had any decent socks for him to wear tomorrow when the nurses will see his feet." Let me tell you, nobody can wear out socks quicker than a toe-walker, although the heels of his socks always remain in pristine condition.   I assured her that he did have non-holey socks to wear to his infusion. And then I reassured her some more, because she said "Are you SURE?" 

What I do know that my mom doesn't know (and I'd like to keep it that way) is that I seriously doubt any of the nurses ever have time to notice Korban's socks. I think they are more worried about getting a basin to us in time because he gets so nervous it makes him sick. And also worried about getting the IV on the first stick. It's so hard. Plus all their other patients, many of which have worse health struggles than Korban. 

Not to mention, his shoes and socks are usually the first thing to go once we get to the infusion clinic. Sometimes his IV has to go in his foot, and they usually check his hands, arms, and feet to see which spot gives them their best chance of getting an IV started. 

Friday was a rough day infusion wise.  We could tell, by the way he was when woke up that morning, that it was going to be a trying day.  (Sometimes you just know, you know?) The nurses asked where we wanted to go and we went for the private room so as to not disrupt the other patients. He did good last month in the main room but this time was different. Korban was pretty nervous and he tenses up and fights it so hard and it's very difficult. They first tried in his right hand and it didn't work. So they moved to the left hand. Got an IV line started there, but before they could get it taped down, Korban pulled it out. So they moved on to his feet. Got an IV line in his left foot, flushed it, and gave him a dose of Benadryl, but he was screaming so much and bending his foot that the vein blew. The needle was literally bent when they took it out. *shudder* So they called in a vein specialist and she was able to get a functioning IV in him.  

Now I have to tell you about this part.  During this process we try to pray with Korban and get him to pray with us to try to calm down.  He does pray very well and he knows some verses he can recite.  So while the nurses are at work and Korban is screaming his head off Brad would start him out with like, "May The Lord" and Korban would finish it out "Bless you and keep you, may The Lord make his face shine upon you..."We did this over and over and it worked for the moment.  At one point he had the nurses praying with him.  What a heart and spirit this little guy has.  

This is what his foot looked like after the fact. Obviously, socks are not a priority. But I really think that people tend to worry over trivial things like socks, that's something we can control. Autism, immune deficiency, eh, not so much control there. And I'd be lying if I said I was okay with that. 

It was so hard to watch. Of course, we HATE seeing him in pain. And there's not really anything we can do about this. We know the immunodeficiency is there. It HAS to be treated. We don't know at this point if he will have to take the treatments for the rest of his life or if his immune system will start working better on it's own. The only way to know for sure is to stop treatments and see how sick he gets. And at our last visit with his immunologist, we all decided that wasn't a good option because we can still see when his infusions start "wearing off." Around week 3 every month, he tires more easily and sometimes gets sick. For example, last week we had to make a trip to the NP where he had a red infected throat that required an antibiotic.  He also took naps last week, which he hardly ever does and is pretty unusual for a typically active 8 year old boy.

So we keep plugging on with infusions, and we are just thankful he really is much healthier on them. I wish there was an easier way, but there isn't. We've talked about getting a port but he's not a good candidate for one due to risk of infection or injury. 

So on Friday, after we finally got his infusion going, we left Brad to watch over a sleepy Korban and I walked Selah back across the street to the Ronald McDonald House to feed her lunch. Yes I said lunch, by this time it was 3 hours later and lunch time.  Usually the medicine is going by around 9am but on this day it was after 11:00.  Needless to say, I was feeling pretty drained and emotional. But I looked at Selah and I happened to remember during all the drama of getting the IV going she had her hands over her ears and was screaming along with Korban. Brad and I both called to her that it was ok, but there wasn't much we could do to comfort her since we were both holding Korban. 

So I said "Hey, were you upset when Korban got his infusion?" Dumb question I know,  but she said "No," real quick. I pressed on--"You seemed upset. You were crying." "Oh, I was just singing real loud," she told me. I didn't argue, just sat there quietly and waited. And then she looked at me with her beautiful blue eyes and blurted out "I thought he was gonna die." I think my heart stopped beating. Why have I never thought of her worrying about that before?!?  So I explained to her that Korban wasn't going to die, and then later when we were up in our room I sat her down and we had a longer talk about it. I tried explaining that Korban doesn't have the kind of sickness that makes you die. So she wanted to know what kind of sickness does make you die. I tried to explain that only God knows and his job is to take care of us and send us to the people that can help us feel better and that is why we come here for Korban, that we trust God.  Not an easy conversation to have with a four year old!  But I just felt guilty for not having it already with her. She knows all about autism, probably more than a lot of adults. But I hadn't really thought to explain the immunodeficiency to her beyond the monthly IV that Korban gets. 

So Friday was an emotional day, but it definitely could've been worse. Korban seemed okay after his infusion. He asked to go to the McWane, so we went and had some fun there. 

I laughed at Brad for not smiling in the first picture, so Selah fixed him. 

They had a new animation exhibit, which was pretty cool. 

Korban was obviously feeling patriotic. 

He said he was "posing."

Digging for dinosaur bones--future palentologist! 

Korban loves things that spin--big visual stim for him! 

This is a like a marble run on a much larger scale--it had several balls about the size of ping pong balls and they did all sorts of cool stuff. Korban watched it for a really long time and then it was very hard to pull him away. So hard in fact that I still have bruises!  He had a meltdown of the very loud and aggressive sort. We had split up because Selah wanted to play in the preschool area so Brad stayed with her and I took Korban on to look at other things.  He had been absolutely fine but I could see his anxiety mounting the longer we stood and watched the ball toy. I'm not sure if it's because he was tired or he had had a rough day or what but it hit all at once. He kept nervously saying "Are we gonna go? Are we gonna go?" Over and over and over. He typically does this when he is nervous and not wanting to leave something behind. It usually means a meltdown is coming. So when I finally told him it was time to move on, he just lost it. Hitting and kicking me, and screaming at the top of his lungs. 

Fortunately, we were right by the elevator so I managed to get him in there but then I was in a quandary because I couldn't turn loose of Korban long enough to push the button and even if I could've my mind was blank and I could NOT remember what floor of the parking garage we were on. I stood there debating so long that someone pushed the button on the outside and the doors open again. 

Imagine this:  Here I am, in an elevator with a VERY upset and struggling child and the doors open back up to a sizable group of people wanting to get on the elevator with us. Adults, children, strollers--all I was seeing was collateral damage. Korban takes one look at this scene and screams "I WANT TO BITE PEOPLE!" Now let me tell you, if he had been being all sweet and they had asked him his name or something, I would've had to say it too because they wouldn't have understood him. But he goes full vampire child on me and enunciates EVERY. STINKING.SYLLABLE. "I WANT TO BITE PEOPLE," he wails, and the people smiled nervously and got on the elevator with us. I didn't know whether to be dismayed or applaud their bravery. 

The good news is, those people had free hands to push a button so at least we got to ride the elevator even if I still couldn't remember where I was supposed to get off. The even better news is, no one got bitten!  And the also very cool news is that Brad and Selah were waiting for us when the elevator went back down and he remembered where we parked. I'm not even totally sure how he knew it was time to go. Maybe he got my Bat Signal. Probably he heard Korban scream "I WANT TO BITE PEOPLE!"

Like I said, challenging day. Parts of it were really hard, but it wasn't all bad. Please pray for strength for us, peace for our family, for Selah not to worry and be afraid, and for Korban's health and anxiety and for him to develop better impulse control. Thanks for following along on our journey!