Just Stuff

Wow, two whole weeks with no James appointments ... I think it's a record!! We've been enjoying a relatively quiet time. Last week I was able to actually enjoy several days in a row without having to be gone half the time for appointments ... what a nice change ... I could get used to this :)

Rob is in the middle of exams right now. He's itching to get back into the truck and out on the road, but still has two more exams to write next week. In the meantime he'll have to settle for a one day of trucking, which he's planning to do tomorrow. Hopefully this will calm the itching a bit, instead of making it worse since he finds it hard enough to concentrate on studying as it is. At least the cool weather has kept him from getting sidetracked outside, and suprisingly the honey-do list is actually quite short right now.

This past weekend we enjoyed a lovely trip back to Chatham to catch up with friends and family in the area. The kids had a great time and James did really well sleeping away from home (something we usually have a struggle with). The girls, especially Marietta, struggled with very bad chest colds, mostly at nights, but were still able to enjoy themselves considering the lack of sleep from coughing and gagging.

As for James' health, he has been doing relatively well but unfortunately their are signs of trouble ahead. He is happy, content and energetic, but runs around with a constant clear runny nose again. Two days after we took James off the antibiotics that he had the allergic reaction to we seen his runny nose come back. The second attempt at antibitotics they put him on two antibiotics at the same time, one for 7 days, one for 14 days. Once back on antibiotics the runny nose disappeared, but two days after he completed the 7 day antibiotics the runny nose was back. We were afraid of what would happen once he came off the 14 day antibiotic, but we didn't see any immediate change until last night (6 days off antibiotics), where we seen the first fever again. As well, over the weekend we seen the ear tugging thing happening again.

It all seems so clear and obvious to us ... the problem is not cured, once again the antibiotics hid the symptoms for a period and now they're back. But of course, we have to prove to the doctor. First we're told it's likely just a cold .... I think we've done this enough to know the difference, and since we know that they will tell us that we waited and watched the symptoms long enough to be confident it's not a cold. Of course, our fear is that in the meantime he will pick up a cold since the girls are roughing their way through one tough chest cold.

Today I called back again to say the symptoms are still the same, no sign of a cold, and first fever last night. The lung specialist called me back and said we can be looking at two things, infection or irritation. Infection can be viral (meaning cold) or another cause (bacteria). Irritation would mean that their is an inflammation as opposed to an infection. What he is referring to is called rhinitis (more indepth explanation here) which is an inflammation of the nose causing excess mucus production. (A form of rhinitis, called allergic rhinitis is commonly known as hay fever - so fancy word for a common problem. In James case it would likely be vasomotor rhinitis which means it's has non-allergic cause or unknown cause) If we're looking at irritation then we shouldn't see fevers, so we'll be watching the fever activity for the next bit. Irritation can be treated by a steroid nasal spray, similar to those used for people with hayfever. Unfortunately if we're looking at infection, which is seems we are due to the fevers (which he had again today) then another round of antibiotics is needed. He has mentioned that he's already been more aggressive then normal with James and would rather not do this ... we really do not want to do either as we do not feel it's helping, but what other options do we have?? We are to watch his symptoms for the next week, until we have an appointment with the specialist again and then we'll have to review our options. In the meantime we're praying he won't pick up the girls cold as we're afraid he won't be able to handle this one. But he amazes us so often and has an excellent immune system, so hopefully he can get past this one as well.

On Friday James will be sedated to have his High Resolution CT Scan done on his lungs. We're also hoping to have his current g-tube changed that day, but we're not holding our breath on that one. Currently his tube has a permanant extension which we have to tape to his stomach to keep out of the way. We hope to have him changed over to a Mickey button tube, which will basically look like a botton in his stomach.

Tomorrow James is going to be reassessed by the Speech Pathologist, which means I should get to completing his word list. James chatters up a storm now and we see no problem with his speech. We know they will still not give him good "marks" as he still has not reach the 200 word mark, at least not in words that I can remember, although everyday it seems he adds more words to his vocabulary. He continues to learn like a typical child does he's just a few months behind. His understanding is excellent and well on-track. The past weeks/month we have really seen our boy start to grow up in his actions and play. Rebecca and James spend a lot of time playing together now and seem to have a special bond, it is so neat to watch them.

Some time ago I mentioned Marietta's finger and how she had some bumps on it which they thought might be ganglion cysts. The bumps suddenly disappeared after a month or so, but her finger remained swollen so I still took her for the x-rays and an ultrasound during the March Break. The results came back that everything was fine and to keep an eye on it. Which we did and one of the bumps suddenly reappeared a couple weeks ago. So after waiting almost a week to make sure it wasn't going to play the disappearing act again I called and asked for another ultrasound, which they booked for today ... but alas the bump is scared of having an ultrasound and disappeared on us again. This time the swelling is gone as well ... so hopefully we've seen the last of it.