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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. :)

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