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Saturday, August 23, 2014

August Infusion

Korban's infusion for this month was Friday. It took three tries to get the IV started but it wasn't as traumatic as last month. He was super nervous about it though. He had obsessed over it all week, and got up crying and throwing up Friday morning. 

But it didn't take as long to get it going as last month and the nurse and the vein specialist talked to me about ways to make it easier in the future. There is a numbing cream they can put on his hands and we are also going to talk to his dr about increasing the Ativan dosage. She prescribed it at the beginning of this year to help his anxiety regarding infusion but it didn't seem to help any so we only used it before a couple of infusions and then gave up. Maybe we will find something that will ease him. 

You can see from the picture that he wasn't terribly upset, at least at this point.  I thought it was so sweet that Selah got up in the bed behind him and rubbed his head and tried to comfort him. She also let him hold her favorite stuffed frog. He asked if the frog could "get a poke" and one of the nurses went through the whole process with the frog. It was very sweet and cute and I really do feel like it helped. 

They also did some blood work for us.  I hadn't mentioned it on here yet but we've had another issue come up with him. A couple of weeks ago he wasn't feeling well so I took him to the dr. I thought he had a cold or sinus infection because he had been run down and sneezing a lot. 

His FNP did a CBC to see if it looked like a virus or an infection, and also told me she would check his blood sugar since he had gained some weight. He weighs 86 lbs y'all!  :(

So he did fine with the little finger stick, but in a few minutes the nurse came back in looking slightly worried and carrying some crackers and a drink. His blood sugar was only 56. And this was after eating two bananas and a carton of yogurt for breakfast and a plate full of chicken nuggets with BBQ sauce on the way to the dr's office. She said she was so surprised she ran the blood again just to make sure. 

So I tried to get him to eat a little of his snack (he wouldn't) and wondered what all that meant. His dr ordered some tests to be done when he went for his infusion. We also got a meter so that we can check his blood sugar at home. It hasn't been that low again, and it hasn't really been high either. It was a struggle to check it on him at first but it's better now. He's getting used to it and it's tiny stick anyway so he's pretty okay with it. 

So anyway, we weren't able to do the glucose tolerance test we were supposed to because he was so nervous and throwing up. That's the test where you have to drink that sweet drink, and there was just no way. They were able to pull some bloodwork from his IV line and we got those results before we left. 

His glucose level and A1C are fine. His insulin levels are high. Normal for his age is 6-13 I think and his was 19.96. Not good. Basically his body is having to produce too much insulin to keep his sugar in check. (Insulin resistance.) So he will be seeing his pediatric endocrinologist next month when she comes back from maternity leave to see how we need to proceed and if he will need medicine. We will definitely have to make dietary changes, and although they will benefit all of us in the long run, it sure won't be easy. 

We would appreciate your prayers so much. I'm feeling some mommy guilt for not keeping him on a healthier diet anyway (although please know I am trying or we would be in a much worse shape than we are currently in.) He basically went from eating only a couple of foods and me worrying that he was starving to him eating obsessively and begging for food all the time. I mean, he will fight for food. 

But I've also heard that having your blood sugar out of whack can cause some serious irritability and food cravings so I'm hoping that once we get this under control he will feel better the whole way around. (The day his blood sugar was 56 I had been hit and clawed so bad before we left the house my arms were bleeding. So I'm at least relieved we know there is a problem so that we can get to work on it.)

I don't want to close this out on a sad note, so I'm going to leave you with some pictures from Korban's favorite post-infusion treat, the McWane Science Center. School is back in session so it wasn't crowded and Korban's behavior was much much better than last month when we were there. 


(I had climbed up in the mushroom and she was peeping through the hole at me.)

Sitting on top of a clear dome with me sitting underneath it. 

I asked her whether she was cooking or doing a science experiment and she said a science experiment. I said "well, what are you learning?" and she responded "I'm just playing Mom!  Don't you know what that is?" Ha!  

She can be sweet though. There was a little boy younger than her who was playing beside her. He pointed at the cup she had and said "Cup!" and reached for it. His grandmother told him that someone else was playing with it and I started looking for another cup to give him but Selah just gave him hers. He appreciated it so much he shared a toy with her too. Very sweet. 

This was a xylophone puzzle that made music. So cute. 

This is a magnetic maze toy. I need to find one for him because he really enjoyed this one!  

She told me she wants me to take her rock climbing. :)

This spun colored sand particles around and it was really cool. 

Both kids loved it. 


He loves to build. 


This is a game in which you see if you can pedal fast enough to get away from a T-Rex. Notice Korban looks worried. ;)

Thankful we had a chance to relax and have fun after his infusion. Please keep us in your prayers. :)

Wednesday, August 20, 2014

Meet the Rebels 2014

We went to Meet the Rebels this past Saturday. It's an annual (free!) event that Ole Miss holds before football season officially starts each year. Basically it just gives everyone who wants to a chance to see the players and coaches up close and personal and get some autographs. Everyone we got to see was so friendly and polite. I think it's so nice that they do this. We had a great time, and of course we are very excited for football season to start. 

Miss Priss was all dolled up in her Rebel gear. 

The ladies golf team had this set up, and Selah was excited to try it out. 

Several of the ladies remembered Selah from previous events we had attended. I thought that was sweet. 

Cheerleaders! 


This was a football toss game that both kids enjoyed. 


They got prizes for playing!

Sunglasses...

And pinwheels! 



Korban was so excited to get to see the players!  He was telling them stuff like "Hotty Toddy" and "Go Rebs!" and of course they loved that. They were really nice to him and gave him fist bumps and high fives and stuff. I was really excited because I don't remember him interacting like that last year, and it made me really happy to see that. 


They had a photo area set up and it was the cutest thing ever!  I think we've found our Christmas card. ;). I put the helmet on Selah but she seriously couldn't raise her chin up off her chest so I just let her hold it for the picture. Ha!  

My friend Eugenia edited this pic for me and I absolutely loved the way it looked. Isn't that cool?!?

Ole Miss has been doing a ton of renovations and everything is looking so nice. The kids are trying to do the "land shark," but they look like they are about to swoon instead. We will have to practice. 

She wanted to "write" Ole Miss with her finger...

And her feet!  




Thankful for a fun family day. :)

One Of THOSE Days

Today was...interesting. We are leaving tomorrow to head to Birmingham for Korban's infusion on Friday and I had lots I needed to get done around the house today. The problem was that I actually thought I could get this done with my kids here. 

I haven't exactly mastered the art of Getting Stuff Done with my kids around. I know other moms are good at it, but I struggle. Since my kids are with me the vast majority of the time, my track record for getting stuff done isn't great. 

Today I started off cleaning in Korban's room. Trying to clean a room while kids are actively playing in it is about like trying to bail water out of a ship using a thimble. But they follow me everywhere I go, and you have to start somewhere so I cleaned while they played. 

I actually felt like I had made a little bit of progress, and then I remembered an email I needed to write so I decided to take a break. The kids were playing nicely together so I left them to it and went and sat down in the living room. 

I had just finished the email when Selah came running into the living room yelling that Korban had taken off his clothes and peed on his bed. (If you've read many of my earlier posts you may remember that he goes through these wild spells in which he thinks bathroom functions are hilarious--especially if they are done anywhere other than the bathroom.)

Sure enough, I found a naked Korban and a puddle on the bed. So I marched him to the bathroom, scolded him, and explained again why we don't pee on the furniture. I dressed him again and went back to his room to strip the bed. A few minutes later I heard him laughing hysterically--he had turned the shower on full blast and climbed in fully clothed. 

So I had to stop what I was doing and start cleaning up that mess. While I was getting him dressed in outfit number 3, he said he needed to poop. So I left him to his potty business and went back to stripping the bed and starting the laundry. Big mistake. After he finished, he got up and wiped his little booty on everything but toilet paper. (Walls, door, etc.) Which gave me my worst mess yet to clean up. Ugh! 

When I finally got all of that taken care of--believe me, it took awhile--I stopped to catch my breath and realized I was missing my phone. We don't have a home phone, we just use cell phones. And while I rarely actually talk on mine, it's pretty much my only outlet to "the outside world."  Actually, the only thing I miss about not having a home phone is being able to use it to call my cell phone when I can't find it. Incidentallly, this wouldn't have done me any good today because my ringer was turned off. 

I knew I had my phone in my hand right before Selah ran in saying that Korban had peed on the bed, but it was anybody's guess where I tossed it during that mad rush. I tried retracing my steps to no avail. I looked and looked and looked. 

This kind of thing really frustrates me. I feel like I've spent too much of my life looking for something that I should be able to find. And I can't even blame it on "mommy brain" because I've pretty much always been this way. (Although I'm sure it has gotten worse.)

I remember when I was in college at Northeast, my roommate was my BFF Kelli. Kelli had her stuff together. I did NOT. So she kinda had to be my roommate, my best friend, and my keeper. I was always losing my keys. Every morning, poor sweet Kelli would have to wake me up so I could make it to class on time and most mornings she had to help me find my keys as well. One morning the roles reversed--I actually had my keys and she couldn't find hers. I enjoyed this a little too much, because it was just so unlike her. So I teased her the whole time we searched until she finally found MY keys and discovered that I'd been holding HERS the whole time. In my defense, we had the exact same keychain--a NEMCC ID badge holder. I'm sure it could've happened to anyone. Although of course, the ID holder had her ID in it, and most people would've probably noticed that it wasn't their ID or that the keys were different. But not me, cause I'm goofy like that. 

Anyway, the point is, I've always been pretty absentminded. And I was fresh out of keepers today. I did bribe the kids to help me look, but they couldn't find my phone either. 

So I wasted all this time looking and was so irritated with myself, but the good news is I did manage to find several other items that I had been looking for:

1) Korban's black tennis shoe. We've only had one for the past month, and I found it's mate today between his train table and the wall in his room. 

2) My cardstock and laminating pouches. I had been wanting to print out some more things for the kids, and couldn't because I didn't have those items. Found them in a Rubbermaid storage container. *Note to self:  if it is an item you are going to be using frequently, DO NOT pack it away in a storage container and forget where you put it. Sheesh self, get a grip!*

3) Patrick. No, I hadn't lost an actual person named Patrick. I'm talking about Spongebob's friend. I actually can't stand Spongebob and we don't let the kids watch that show, but a few weeks ago my mom got them kid's packs at Sonic and Korban got a Spongebob toy in his. He didn't really care for the toy, but it came with little cardboard cutouts and he became really obsessed with the Patrick cutout. He was flying him in a paper airplane and lost him.  My mom and I were so moved by his piteous cries of "I loosed him!" that we spent quite a bit of time looking for Patrick, whom I don't even like. But he didn't turn up until today when I was on my hands and knees peering underneath the dresser in the guest bedroom. There sat Patrick, riding a dust bunny. I snatched him up trimumphantly and shouted "Korban!  I found Patrick!" Last week Korban cried over Patrick for half an hour. This week he gave zero cares about him. 

3). Three blocks of generic Velvetta. I know what you're thinking, how could anybody lose three blocks of Velvetta and then find them in the course of looking for a lost cell phone?  Well, here's how it happened. I guess in telling this story I am admitting that I compulsively hoard processed cheese product. Now the world knows. I know it is nutritionally worthless and bad for you, but I have always loved it. The thing I don't get is why is it so expensive?  It's pretty much just lard and orange food coloring isn't it?  Oh, and melty deliciousness. I guess the melty deliciousness is what makes it kinda pricey. 

I love the grocery store Aldi's and they have their own brand of Velvetta-type cheese that's just as good and much less expensive. I don't get to go to Aldi's very often so I try to stock up on stuff when I do. Last weekend Brad was trying to cook us omelets for breakfast and was complaining that we didn't have Velvetta and I was telling him that I KNEW I had bought some at Aldi's. So today I was rooting around in the pantry in a desperate search for my phone. I know that sounds crazy, but I wasn't in the best of mindsets when I misplaced it. I checked the freezer and the washer and dryer too. Anyhow, I moved a big box of crackers in the back of the pantry and BAM! found three golden bricks of fake cheese stacked end to end. 

So there were some positives to my day, even though I mostly felt like Satan himself was following me around trying to trip me up. By then it was lunch time and I still hadn't found my phone. I fixed the kids something to eat and was carrying it to them. Korban grabbed my arm suddenly, causing Selah's plate to tip precariously. Miraculously, all her food stayed put. However, her fork went sailing over the side of the plate and landed--tine side down, mind you--on my big toe. And I was wearing flip flops. Let me just tell you, I birthed two children with less pain than that. I literally saw stars but I didn't want to freak the kids out so I was trying to not, you know, scream in agony or anything.  I tried to stifle it and strange sounds were coming from my mouth. Selah said "Mom, why are you looking so crazy?" (Seriously, she said that.) I tried to answer her reassuringly but was only able to grunt out something that sounded like "Grum...grrr." She shrugged and ate her watermelon. 

I have an honest to goodness puncture wound in my toe. It looks like I was bitten by a very tiny vampire. I mean really, who else in the world could stab herself in the toe with a fork?!?

But I survived, and the afternoon wore on with no sign of my phone. I was really starting to worry that I wouldn't find it before we had to leave tomorrow, but I was trying to move along and get ready for our trip. 

Laundry is an ongoing thing of course, and Korban loves to watch the washer. It has a clear lid and he can see the clothes spin. So both kids were watching the washer and I went to the bedroom to put away a stack of clean clothes. I had barely walked away before I heard a huge crash from the laundry room. I went running back in there to survey the damage. Thankfully no one was hurt, but the large wooden bar above my washer and dryer that holds clothes hangers was in the floor, as well as a mess of clothes hangers and two guilty looking children. Can you believe they both tried to swing from the bar?!?  Thankfully they didn't get hurt and the bar wasn't even broken. I was able to pop it back up with very little fuss. But my patience had grown quite thin. I told the kids that they were going to have to "GET SOMEWHERE AND SIT DOWN." So I settled them down with a Veggie Tales DVD and contemplated the fact that I get even more Southern as I get angry. I heard myself refer to my kids as "all y'all" even though I only have like two of them. Weird. 

I continued to try and clean. I bagged up some stuff to give away, including some spools of ribbon that I didn't think we would ever use. I guess I was wrong. My children opened the sack when I wasn't looking. You know how it is, the kids always have to make sure you aren't giving away anything good and it wouldn't matter if you were giving away dryer lint they would suddenly have an intense urge to keep it. So they found all this ribbon and decided to have a birthday party and decorate for it. Oh yes they did. Five large spools of ribbon. You couldn't walk without getting your feet tangled up. But that really was the most fun mess we cleaned up today. 

Although they wore me out today, I sure do love my kids.  I know they are antsy about our trip to Birmingham for Korban's infusion. It didn't go so well last month, and I'm nervous too. And they really can be sweet. Tonight they took a load of laundry (a quilt and a blanket) out of the dryer all by themselves and put the clothes from the washer in the dryer. Selah said it was so I wouldn't have to do everything myself. Ha!  

As for my phone, I felt pretty strongly that I had laid it down somewhere it Korban's room. But where?  I had moved every piece of furniture, even took the mattress out of his racecar bed and looked beneath it. I thought maybe I had dropped it while changing the sheets. 

Tonight at around 8:00 I tried standing in his room and looking for anything I might have missed. My eyes landed on a box I had pulled out of his closet to go through this morning. Sure enough, my phone had fallen down in it. 

I was very glad to have finally found it. I hate losing stuff. Today was tiring to say the least. Tonight I found myself rooting around in the pantry again, this time in hopes of chocolate. I figured if the pantry could cough up a small fortune of Velvetta I might find another prize. I didn't find any chocolate, but I did find two Fruit Roll Ups, one red and one blue. I couldn't decide which color I wanted so I just inhaled both of them. 

This is how Korban ended his day. I feel the same way. Good night to all y'all. ;)

Monday, August 18, 2014

Back To School

Korban started back to school this past Thursday. Everyone else started the week before, but we were waiting on his medical exemption for immunizations to return from the Department of Health

*A word about that, since people are likely to be curious. Korban got all of his vaccines on time as a baby. We were real sticklers for well-baby visits and all that typically go with them. As Korban got older he just stayed sick all the time. When his doctors first suspected something wasn't right with his immune system, they checked something called vaccine titers. Basically, this is a measurement of whether or not your body responded to the vaccines you got by making antibodies that make you immune to the diseases vaccines are ideally supposed to protect you from. Guess what?  Korban had not built immunity to a handful of scary diseases that we naturally expected him to be immune to since we had made sure he got all his shots on time. The immunologist we were seeing at the time recommended that he get the shots again, and even though we didn't love that idea we did it anyway. Initially, he had an immune response but it didn't last. 

We started seeing the immunologist we are currently seeing about that time. Then the hypogammaglobulanemia was diagnosed at age four, and we began treatment for it. All the antibodies for the diseases that vaccines normally prevent are in his monthly IViG treatment, so it isn't necessary for him to get vaccines while he is getting these treatments. Thankfully, he now has immunities to protect him from all those scary diseases and the only vaccine that they recommend for him is a flu shot, because what's in that shot changes seasonally. 

So his dr had to write a letter to the department of health explaining this and they issue a formal exemption for him for the school to keep on file. I was just late getting it this year, so he had a slight delay in starting school. But it's all good!  He was actually sick when school started anyway, so it worked out better for us to start late.*

He was happy to get to go see his teacher!  We had missed her. She is still working with him one-on-one for an hour each morning and I stay with him. Here he is getting ready to go into school Thursday morning:


He had a good day and was glad to be back. Selah starts back to Head Start a week from Monday. She's looking forward to it. 

In addition, I bought a little preschool program to do with them at home. It's called Raising Rock Stars Preschool and I found it on the www.1plus1plus1equals1.com website. It's awesome!  It only cost $10 to download, and I've been working on printing out all the materials and getting things laminated, etc. It's a Biblically based 26 week program. Every week focuses on a letter, shape, color, sight word and a Bible verse that corresponds to the letter of the week. 

I found that website on Pinterest and I absolutely love it. She has tons of printable packets in all different fun themes and they are all free!  I had already printed out several of those for my kids and they enjoyed them, especially the Jake and the Neverland Pirates and Mickey Mouse packets. 

This week the letter was "L."  One of the things I did was write a big L on a half sheet of construction paper and have them sticker it with little stickers. 


Then I flipped it over and drew another big L, which you can see bleeding through the page in the picture above. ;)

This time, I gave them a bingo dot marker and told them to stamp the letter L. They had never used a bingo dot marker before, so they were intrigued. Korban's looked like this:

You can see where he made one stray mark just to see how it worked and then followed the L pretty meticulously the rest of the time. 

Here is Selah's:
Can you tell she was excited?  I got so tickled. She's my little artsy girl, and she just went nuts with that marker. So funny. 

Here's Korban writing his L's on a dry erase board. The top two lines were hand over hand and the rest was on his own. Writing is a pretty new thing for him (in the past we couldn't get him to even hold a pencil or a crayon) so I'm very proud of this. 

Here's some of what he did at school with his teacher his first day back:



Please say some prayers for all of us as we grow and learn!  :)

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.