Friday, April 29, 2011

The Un-Fun Stuff, Part Two

(I have to preface this by saying that I normally wouldn't post such personal details about the boys' lives online...but over the past few weeks I've been thinking about this issue and realized that perhaps other kids and parents are dealing with similar issues. Maybe this story will help other parents know to watch out for this sort of thing)

This post is a continuation of THIS POST.

After the boys finished with school and headed off to their after-school program, I got a phone call that Jellybean wasn't feeling well...So I headed off to pick him up and go home. He said his tummy hurt and I didn't think too much about it. Then Z asked him if he had eaten anything weird that day. Jellybean was quiet. So, I repeated the question and asked if he had eaten anything weird outside while he was at recess. Now...this is not a question we usually ask. In fact, it isn't something that even occurred to me to ask. But, that afternoon we learned that Jellybean had been eating sand while he was outside on the playground at school.

This discovery totally threw me for a loop. I wasn't expecting it. I had NEVER seen him do it (I still haven't). It had never occurred to me that I should tell the boys not to eat sand. So I asked him some additional questions about it. Why does he eat sand? When does he eat sand? What is it about sand that he likes to eat? Does he do this often? It turns out he likes the taste of sand...and he eats it when he's hungry at school and doesn't have anything else to eat.

Ugh.

Why is it he doesn't know he can just ask a grown-up for food when he's hungry? It made me feel like the worst mom in the world that my kid was so hungry he felt like he needed to eat sand to feel better. So we had a talk about it. We explained that sand is not food. It isn't healthy to eat it. It can make you sick. And if he is hungry, he just has to ask a grown-up for food. I explained I would take him shopping to find food that he wants to eat to put in his lunchbox to make his lunch bigger. And I would let him pick out snacks to take to school to give to his teacher so that whenever he is hungry he just has to tell her and she will let him have some of his snacks. I also made sure to let him know that I would talk with his after-school program teachers to let them know that all he has to do is ask for a snack and they will get him one.

Now, I know in my head that this is not "my fault". And I know that it is likely just as much of a psychological issue for him as it is a physical one. He says he's "always" eaten sand "sometimes". I know that it is possible that it is something he did while he was in Ghana truly suffering from malnutrition. Perhaps eating sand then provided him with some comfort...so when he feels hungry now, his first impulse is to eat some sand to satiate the hunger a bit and get some comfort. Of course, I don't know that for sure. And it doesn't make me feel all that much better to think that.

But now the issue is out in the open with us (and his teachers at school), so everyone is watching for it...and he now knows he has lots of grown-ups to talk to if he feels hungry. And he knows all of them will help him find a snack to eat to make him feel better. I hope this issue is an issue of the past now...but we'll have to wait and see.

Anyway, the tummy-ache now made total sense...and I started to worry that we had to deal with a more troublesome medical issue like a blockage of some sort. So, I made some phone calls and came to the conclusion that we needed to help him get things "moving". A trip to the pharmacy to get some milk of magnesia, prunes, and applesauce should do the trick. And it did.

We thought we were in the clear and we sent Jellybean to bed for the night. But by then I was exhausted emotionally. The whole evening had just thrown me and I was trying to sort some things out. I felt awful about the whole situation. How could a kid be so hungry that he feels he needs to eat sand? We have SO MUCH FOOD at our house (seriously), how could he think that he didn't have access to food to eat? Whenever he's home and he says he's hungry, we get him something to eat. How could this be happening? How could I not have known about it?

Ugh and Ugh.

But...that also wasn't the end of our night. Two hours after he went up to bed, I heard him get up and call for me. So, I went to check on him to find him sobbing and clutching his chest. He said his chest hurt...and then started crying harder. I brought him downstairs to check him out a little better (and so he didn't wake Peanut). I couldn't find anything obvious that could be causing the pain. But I also didn't know if it was related to the earlier issue or something else. The fact that it was his chest made me really worry. And the fact that he seemed to be having trouble breathing worried me even more.

Earlier in the evening, our dryer broke (it was a REALLY bad night), so Z had to run to the laundromat with a wet load of laundry to get it dry. I knew that he was going to be getting home any minute, but waiting for him was tough. I couldn't leave Peanut alone to run Jellybean to the ER...so I just started getting Jellybean's coat and shoes on so that as soon as Z got home we could leave. Just as I was zipping his coat, Z walked in and I explained what was going on. He handed me the laundry and I handed him Jellybean and off they went.

That night, Jellybean was admitted to the hospital for the first time. The diagnosis was sickle cell pain crisis. It was just in a new location for him...and a scary one. And the pain was more intense than anything he had dealt with before. But, after a night with IV fluids and pain meds he was back to his normal self. It was a scary night...but it all ended ok. And (as bad as this sounds), the timing worked out pretty great. Since we had just found out about the sand-eating and we didn't know if the pain could in some way be related to that, we made sure the doctors knew about it and could talk with him about it while he was in the ER. Hopefully getting an earful about it from the doctor will make him think twice about eating it again!

I have some ideas about what triggered this pain crisis. In my gut, I am sure it is related to the lack of sleep from the sleep study the night before. And I am sure it is also possible it had something to do with the anxiety he had about the sleep study and about revealing his "secret" to us. Its hard to know for sure, of course.

That was the first hospitalization. We've since had another one...but that story can wait for the next post.

The Un-Fun Stuff, Part One


Over the past couple of months, we've had some un-fun stuff to deal with. Don't get me wrong, we've had some really fun things going on, too...but for at least the past couple of months the un-fun stuff is what is sticking with me.

After Jellybean and Peanut came home, we learned that Jellybean had sickle cell disease. It wouldn't have mattered to us had we learned about it before the boys came home, but it came as a bit of a surprise to learn it after they had arrived home. But, for the past 3 years Jellybean's sickle cell took a backseat in our lives. Jellybean had VERY few pain episodes and they were all relatively easy to treat (just over-the-counter pain meds and lots of water and he was good to go in a day or two).

All that changed at the beginning of March.

Because of some sort-of related issues with Jellybean, we decided (with his doctors) that it was necessary for him to have a sleep study done to help us determine whether or not Jellybean needs to have surgery to get his tonsils and adenoids taken out. After lots of run-around with the sleep center, we finally got an appointment made. They wanted him to come in about an hour before his regular bedtime so that he could get used to the place and get all hooked up before his bedtime. They said it took about 40 minutes to get him all hooked up.

When we arrived the sleep technician was all excited to tell us she had already turned on The Disney Channel in our room so Jellybean could watch TV while he got hooked up. Now, I don't mind him watching some TV...but I also know that if there is a TV on in any room, Jellybean gets completely transfixed by it and absorbed in it. Once he gets into something, it is hard for him to sleep. But, I decided to let the TV stay on to keep him distracted from all the wires the tech was putting on him.

The TV was not our problem, however.

The problem was that the tech would hook up an electrode or two and then leave. A few minutes later she'd be back to hook up an electrode or two and then leave again. The 40-minute prep time for the sleep study turned in to a two and a half hour prep time. We didn't turn off the lights in our room until nearly 10pm!! If I had known it was going to take so long, I would have insisted we arrive earlier! I had to stay with Jellybean during the sleep study, but I had to sleep on the recliner in the room...not exactly comfortable sleeping arrangements for me. But, I can deal. The next problem was that the tech kept coming into the room, waking me (and Jellybean) up for random things. Then, she came in around 4:00am to ask me if I wanted her to wake us up at 5:00am. What?!?! Why on earth would I want her to wake us up at 5:00am? Jellybean requires LOTS of sleep...he had already lost nearly 2 hours of sleep because he got to bed late...I definitely did not want him to lose even more by getting up so early the next morning. So, I told her to wait until 6:30 to wake us up.

We finished the sleep study and headed off on our merry way the next morning. Of course, I was pretty unhappy with the tech and how the study was conducted, but it was over and there wasn't anything I could do about it (except complain to the doctor when we saw her to talk about results - which I definitely did).

But, that night we had an entirely new issue to deal with. Part 2 coming up next....

Monday, April 11, 2011

Eagle Cam

Have you all been watching this? We LOVE the Eagle Cam at our house...it is so much fun to watch the eagles taking care of their young. The boys' classrooms are watching the eagle cam and making journal entries as well.

I've been keeping the eagle cam on live streaming when we are at home and we just watch for a bit when we happen to be walking by the computer or sitting down for a bit nearby.

Enjoy!

Live TV : Ustream