Last night, I ran to the grocery store. I was gone about twenty minutes and when I came back, Joel and daddy were reading a story. Ryan said, “Watch this.” ”What does a duck say?” and Joel said, “Quaa Quaa”
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It was really wonderful. I feel like Joel is verbalizing more and more and just trying harder to communicate all the time. Twice in the past few days Joel has said “bye bye” while waving. It doesn’t sound exactly like bye bye, but close enough that you can tell what he’s saying.
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Today, Joel took my contact solution off my bedside stand and held it up to my mouth and made the sign and sound for water. Then he saw my contact case, so he took the contact solution and hit it against the contact case several times, then he took the contact case and jabbed it into my eye several times. I showed Ryan, since this was a game he continued though several cycles. Ryan said, “See, he’s paying attention, he knows how things work.”
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Joel seems to be doing more every day, we are so glad.
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Caleb, Isaac and Elijah have all had fevers in the last 24 hours, so pray for Joel that he does not get a fever so we can keep Joel home and not have to take him to the hospital.
As soon as we started shaving Joel’s head, I wished we hadn’t. I cried. Ryan and I both think it may have been a mistake. Bald Joel just looks like sick Joel to us. Thin, patchy hair never looks good, and so probably the shaved head is better than how it was, but frankly we hate it. You can pray for us that we get used to the haircut quickly. In the meantime, we’re going to find some cute hats. Here are a few before during and after pictures.
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Pictures From Before
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Pictures During and After
Tonight’s the night. We are shaving Joel’s head. It was getting so thin, it hasn’t looked good for quite some time, but it was hard to let it go. We finally decided just to shave his head. We are going to let each of the boys cut off a longer piece before we shave it. Honestly, before I was really sad about him having no hair, because I thought people would always be able to tell he was sick. Now, I think, if people know he’s sick, they are more likely to ask about him, and if they ask about him, it gives me a chance to tell his testimony, which is especially cool since we just had a huge miracle last month. We will post pictures soon.
Joel is feeling much, much better today. Finally had a bowel movement last night just before midnight. So glad he’s not in pain anymore! Thanks for praying!
Joel is having a rough night. His stomach is bloated, he is belching constantly and acts completely miserable. This is very unusual behavior for Joel. He has not had a bowel movement since before the surgery, but we checked with the on-call doctor who did not seem very concerned, and advised us to just continue to monitor Joel at home. Please pray for Joel that he is able to fall asleep and that this gas issue resolves itself. Thanks!
We are on our way home. Joel did great. He was even slightly less cranky than usual for a surgery! We are excited about the new port!
Joel’s new central line is in place and ready to go. Everything went well and we’ll be called back to see him in the next half hour or so.
Joel’s surgery started a little late. Not too bad, maybe between 15 and 25 minutes late. They expect it to take less than an hour. Joel was the calmest we have ever seen him falling asleep on gas. He never protested once, he didn’t fight the mask, or turn his head. He just looked around a lot with his eyes, and we talked to him all about how great he was doing. He fell asleep with his eyes open which is something we’ve never seen before.
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We will wait here in the waiting room until they come get us.
We are waiting for surgery. Joel is in a great mood. He has signed for water a few times, one of the drawbacks for us as parents to his new communication skills is seeing his frustration when we can’t respond to his requests.
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The nurse we just spoke to is a huge fan of ports and thinks we will like it much more than the broviac. We think we will too, which is why we decided to try it this time around.
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We are hoping the surgery will start right at 7:30 since that is the first surgery time of the day there shouldn’t be any reason for us to get behind in the schedule.
We have scheduled Joel for a new surgery tomorrow morning to replace his central line that was accidentally pulled on Monday.
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Instead of a broviac, we are planning on a new type of access called a medi-port. This new access point will be hidden under his skin, and a much shorter tube will be used to administer the Etoposide during his chemo cycles.
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This also means that on our off weeks, the tube will be removed and, since the access point is under the skin, he will be able to swim and take baths and we won’t have to worry about an 8 inch rubber tube sticking out of his chest.
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We have an early morning tomorrow as we have to be at the hospital at 5:30 for the 7:30 am procedure so I’d better get to bed.
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Thank you for your continued prayers.
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-Ryan
