When we got Joel’s labs on Wednesday his hemoglobin was just 8.2 (8 is the cut off for needing a blood transfusion.) We normally don’t do labs until Friday, so for his red blood cells to be so low so early made me a little nervous. He’s had much less energy the last couple days. A few different times toda,y as he was just laying still, he began to moan. It didn’t last long, but it was pretty unusual. I suspect his hemoglobin may already be lower, perhaps low enough to need a blood transfusion. We’re scheduled for a clinic visit and MRI on Monday, so unless Joel becomes completely lethargic between now and then, we’ll just address it Monday. In the meantime, you could pray for his body to start producing more hemoglobin and for his energy to return. (Especially because we’re taking him to a fishing derby for kids with serious illnesses and their siblings tomorrow.) We think tomorrow will be a really fun day, and we want Joel to be able to enjoy it.
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Also on Wednesday, Joel had an audiology appointment. They tested Joel’s hearing with his hearing aids on for the first time. They found that with his hearing aids on he can hear the full spectrum of human speech, it is the kind of results they hope for. It was encouraging, and I’m hoping it gives me motivation to keep working with Joel on his hearing aids. Will you pray for extra grace for us as we try to help Joel wear his hearing aids more and more often? We have not had much momentum in this area lately, but I know it’s important. It’s hard to make Joel do something he hates.
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Today we took the boys to go see some puppies a friend of ours is fostering. It was such a blast. Here are a few photos.
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Joel is four-years-old today!
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I love to throw big parties, but this year, before his last MRI, I was really looking forward to a simple no-frills family birthday party. Then, just like we do every year before Christmas, we got the news that Joel was dying. So, my simple plans were out the window, and I began to look into how I could rent or purchase a giant Barney costume for an outrageous party.
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However, Joel began to feel better a few weeks ago. His turn around helped me realize that any impulse I had to make a big deal of this birthday was just based on fear that it could be his last one. I believe Joel will live to see many more birthdays, and I wanted my actions to match my heart. There is much to celebrate this year, of course! Every birthday Joel has is a tangible reminder to us that God has been so faithful. We went swimming for Joel’s birthday. We invited family and a couple family friends. We had cake, ice cream and presents at home. It was very sweet and very normal. I loved every minute of it. I think Joel did too!
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Joel recovered so well from the surgery! By Sunday it seemed like he was back to 100%, we were amazed! He only had one dose of tylenol, right after the surgery, and never needed another one. His new port works great, it is such a relief! The old malfunctioning port was a constant cause of stress and frustration.
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God, Elijah and I had a funny moment on Sunday. Ryan had strep throat, Joel had a double ear infection, and Joel after being extremely angry for a day or two, sprung a high fever Saturday night. Sunday I took Joel to urgent care so they could look in his ears or check him for strep. We waited in the waiting room for almost an hour, then they took us back to an exam room where a nurse saw Elijah and we waited at least another forty minutes with Elijah acting very fitful and angry. Just before the doctor walked in, I really felt like I was supposed to pray for Elijah to be healed, and I kid you not, my though in response to this was, ‘No, if I was going to pray for Elijah to be healed I should have done it last night, or this morning, or at least in the waiting room. Now, if I pray for him and he’s healed, the doctor just won’t find anything so I’ll never really know if he was healed, plus I’ve already waited here all morning.’ Well, I couldn’t shake the feeling I should pray for him, so I did. I prayed for Elijah to be healed but it was not a powerful, passionate, exciting prayer. Sure enough the doctor said his ears looked great, his throat look great, and at my insistence she did a strep test that came back negative. She suggested he might be teething and then gave us an official diagnosis of “fussy baby.” So obnoxious. Oh well, maybe Elijah was healed, on Sunday, maybe not, but he’s been acting much better and the fever hasn’t returned, so I can’t complain!
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We went to the zoo today with Isaac pre-school, here’s a few cute photos.
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The dentist told us today that the new plan is just to fill Joel’s seven cavities with white filling. If any of the teeth appear to need root canals they will be pulled instead. (Although from what they can see now it does not look like this will be necessary. The white filling will not last as long as silver crowns would, but metal in Joel’s mouth would distort MRI images, so it just is not an option. Hopefully with some good brushing we can make the white fillings last as long as possible. All of the dental work will be done with Joel under anesthesia, possibly the same day as Joel’s next MRI.
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We have new hearing aid hats for Joel, so after a two or three week break we are putting Joel’s hearing aids on again. He still takes the right hearing aid out immediately, but he will leave the left one in almost all day. There is still fluid in the right ear, and at the last audiology appointment they could not measure any ear drum movement in either of Joel’s ears, so we are considering taking Joel to an Ear Nose and Throat specialist, since it has been about three months now that Joel has had fluid in that right ear.
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Joel’s left eye seems more turned in to us. I don’t know what to make of it. Even thinking about it is a little stressful. He has had so many problems with his eyes that it is hard to assume that a change in the amount his eyes cross signifies anything, but it is not a good change. Please pray that we have wisdom about how to respond.
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Tonight I put all four boys in the bathtub together. They splashed and splashed and cracked themselves up, it was precious. Joel kept kissing Elijah over and over again, even though Elijah continued to splash water right in Joel’s face. Joel is doing well, it is a good season, but an uneasy one. Radiation necrosis can happen up to six months after the radiation treatment, and it is hard to see Joel refusing to use his walker when he used to love it so much. I love seeing pride on Joel’s face, and I never saw it more than when he was walking with his walker. Right now it’s hard to imagine new accomplishments, greater strides forward in Joel’s life, but then I remember when it was hard for me to imagine Joel swallowing food, and if this picture shows anything, it’s that my chunky little guy has mastered that challenge!
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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
We had a really fun time at Joel’s Birthday party, and I think he did too! There was no specific theme, but we just tried to do things Joel liked, so kids blew bubbles at him, and we hit balloons up in the air and around the room, we played hot potato with a football and we all had rootbeer floats. Our big boy is 3-years-old, and he starts pre-school on Tuesday.
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Joel will be in preschool four days a week, three hours a day. It seems like a lot for a 3-year-old, but he will get lots of very focused attention and speech, physical, occupational and hearing therapy. I think the experience will be really good for Joel and that he may overcome more of his developmental delays.
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We have been wondering for the past couple days if Joel might be getting sick. He acts cranky and feels slightly warm, but never with a temperature. We are watching him closesly, but Ryan and I both suspect we may be spending some time in the hospital soon. Maybe Joel’s counts are still high enough to let us stay home even if he does get a fever!
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Here are a few photos from Joel’s party!
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