My Poor Will

Will has strep again. It's really bad. His tonsils and the back of his throat are covered in white pus (sorry if that's gross!). He hasn't eaten in 2 days and has only had 1-2 oz of fluid since Friday. He just lays around and cries. I know he feels terrible. He's running fever with it. It's been staying in the 102 to 102.7 range, which makes him feel even worse. The other issue with the fever is that it makes him more likely to have a grand mal seizure. He had his first one the last time he had strep about a month ago. I've been treating him with Tylenol and Advil around the clock this time trying to prevent any seizures. He'll have to miss school tomorrow, which we all hate. It's so good for him to be there. Pray that Will gets better very soon.
As far as updates go, Will went to the ophthalmologist on Tuesday. We're patching his eyes again. The right eye wonders more than the left, so we're patching the left eye for 2 days, then the right eye for 1. He does okay with it as long as we tape the patch around his head! I feel kind of sorry for him, but we only do it at home, so people don't stare at him any more than normal when we're out and about. Cate took a step and a half today! Hooray! I think we're on the verge of independent walking. I certainly hope so. She was sick the first of the week and is better now, so we're hoping she doesn't get sick again with what Will has. I swear, if I could keep my kids healthy, I'm not sure I'd know what to do with myself! I really hope my next post has nothing to do with my kids being sick and is all about how Cate is walking or how Will learned a new word or something awesome like that! We'll see....

Good Week

Well, we had a good week this week. Both of the kids got over their strep infections and are back to normal. Will started back to school yesterday after a 3 week break. I think he was glad to go back, and I know Jeremiah was glad for him to go back. We love Will very much, but he is exhausting! He'll be in school for 6 weeks and then have another 3 week break. The new school year starts in August. Cate is growing well from what we can tell. She hasn't been weighed in 6-8 weeks, but she looks like she's gaining to me. She still isn't walking, but I think she's close. Once or twice she's really thought about letting go but decided against it at the last minute. She isn't saying any words yet, and that worries me. By 12 months, she should be saying mama and dada to the appropriate person and have 1-5 other meaningful words. She says dada, but not appropriately, just whenever she babbles. She does say uh-oh, and uses it appropriately most times, so that's good. I'm sure I'm just overreacting because of Will, but I just really want Cate to develop normally. She starts mother's day out at Highland Park Learning School in August. I think this will help her development a ton. Being around "normal" kids and getting that socialization will be good for her. They also do music, art, school lessons appropriate for age, and a lot of other stuff. I think it will be very good for her, and it will give Jeremiah 2 days a week to himself to do housework, run errands, and rest. Will goes back to the ophthalmologist in a week, and we'll find out if he's going to get glasses,go straight to surgery, or just wait on his eyes wondering. They are getting worse, so I won't be surprised if we get glasses this visit. Anyway, that's all there is for now.

Sick Again

Cate is sick again. It was exactly 4 weeks from her last upper respiratory infection that this one started. This time Will got sick too. He was diagnosed with strep. The doctor treated Cate too in case she had it, but she wasn't tested. I'm really really tired of her getting sick. And, I'd really really like to know for sure that she doesn't have CF. I started not to worry about CF after the pulmonologist appointment. The asthma medicines seemed to help a little; she isn't coughing as much when she isn't sick. Then, like clockwork, she got sick again, and I start to worry again. Help!!! Please pray that they both get better and that Cate stops this cycle of getting sick every 3-4 weeks. Hopefully more encouraging updates to come.

It's Official

It is official. Will has Angelman Syndrome. This is what I have felt in my heart for the past two years is the cause of Will's "specialness." We saw a specialist in Birmingham, AL (at UAB) who gave Will the clinical diagnosis of Angelman Syndrome. This is a genetic syndrome that is confirmed by lab work in 80-85% of cases. Because Will's lab tests have been normal, we had to see a doctor who had worked with enough AS kids to know enough to give a clinical diagnosis. And he said Will fit the picture of AS to a tee! Everyone keeps asking me what AS is, and rather than try to explain it in this post, I'll give the Angelman Syndrome Foundation website, and you can read until your heart's content! The address is www.angelman.org.
And on a side note, Cate is sick AGAIN! The asthma meds are working between illnesses, but right on cue, she got sick again exactly 4 weeks from her last respiratory infection. Pray for her that she gets better and that she does only have asthma.
More updates to come.

My Smart Boy!

This afternoon Will and I were playing with his MagnaDoodle. I'm sure you all remember this toy. It's the one with the special pen that writes on the surface and has the knob you move from side to side to erase what you drew. Anyway, I wrote Will's name on it and showed it to him. Then he pointed to himself, pointed to his name, and pointed back to himself. I tested him and he did it again. Then I put Cate's name on it, and he just stared at it. I think he can read his name, or at least recognizes it!!! This may not mean a lot to some people, but to me it's AWESOME! I always knew Will was smart, and that he just can't express everything he thinks or feels. This let me know I'm right. Just wanted to share with you all how smart my BudBud is!

More Good News (Sort Of)!

I took Cate to the pulmonologist in Oklahoma City yesterday. He said that Cate's history and chest x-ray findings are consistent with asthma, not cystic fibrosis! Hooray! He said with her low sweat test score and no mutations showing up so far, tha he would be shocked if she has CF! We are still going to have our pediatrician do the full CF mutation panel so we can completely rule out CF and put our minds at ease.

The pulmonologist is starting Cate on an asthma regimen. This included twice daily inhaled steroids, a short course of oral steroids, and albuterol as she needs it. He said we should start seeing some improvement over the next few weeks. If is not asthma (which is very unlikely according to the doctor), then she won't get any better and could possibly get worse. If this happens, he'll do more testing in 3 months when we go back. I'm praying that it is asthma and that she does get better. Plus, we'll have already done the full mutation panel and will know for sure that she doesn't (hopefully!!) have CF.

More updates to come. When we get the results of the mutation panel (in 5-6 weeks), I'll let everyone know. As for now, please pray that this is asthma (weird to pray for that I know) and that the medicines help Cate.

Good Results

Cate had another sweat test today. This is part of the work-up for cystic fibrosis. Her first result was 41, which is indeterminate (too high to be negative and too low to be positive). The result today was 18!!! This is well within the normal range. I was very excited to hear that. It doesn't completely rule out the possibility of cystic fibrosis though. There are many people with CF who have had sweat test results as low as 10. I'm hoping this is a good sign and that Cate doesn't have CF. We're going to see a pulmonologist in Oklahoma City on Tuesday. I am going to ask him to do a test that tests for 1500 mutations that cause CF. If it's negative, that means there is a less than 1% chance she has CF. If she does have CF, it should pick it up. We're praying that she's just kind of puny and that everything will work itself out. Pray with us that she doesn't have this disease and that she'll gain weight and stop having all of these respiratory infections. I'll post again after we see Dr. Royall on Tuesday.