Filling in the Blanks

Well, like so many other things around here, James' journal was not complete that day and I never did get around to completing the entry. From now on James' journal will be the blog, hopefully that way I can keep up and not be dublicating between e-mails and his journal. So this leaves me with the task to fill in all that has been going on up to today date and then hopefully I can carry on with more reasonable length entries.

Tuesday, September 19, 2006
James had a pediatrician visit. A couple of the issues we dealt with at this visit was James’ constant sweating and his feet.

Since birth James sweats easily and excessivley. I would always have a pile of sheets under his main crib sheet in order to absorb the sweat. This sweating was worse with warmer weather, but also noticeable when it wasn’t so warm. Recently we had noticed how it would also happen more frequently when he was traumatized. If he were to fall or trip he would break out in a sweat in seconds and have beads of it on his almost bald head. We began to wonder if there is more too this. It was decided to do blood work regarding his thyroid. Although it’s not common in young children, it is possible to have thyroid problems at this age. Our Pediatrician also suggested getting an Echo done. I did not really ask much about this, or why this test because at the time I didn’t really realize what it was.

Another thing we noticed now that James was walking on his own was that his feet point outwards, especially his right foot, which at times makes him favour his left leg. We had seen it before when he was walking behind a walker and had hoped it would correct itself once the walker was no longer in the way of his feet., but as we look at his foot it seems to be in the actual bone structure. The doctor said that it is still possible to correct on it’s own, but she would like to have him checked out just in case.

Also this visit, we received results from some stool tests that were done to check the PH level in James’ bowel movements, to see if they were high and whether this was causing the sore bum. The one test came back in the normal range, the other specimen they were unable to use.

Tuesday, October 31, 2006
This day was a Genetic visit. Since our Pediatrician oversees most things and contacts Genetics if there is any major concern there was not a lot to be said or done at this meeting.

James had been doing well, he was growing and looked healthy. At this time he is not meeting his full volume requirements for his formula feeds each day. He is suppose to get 1300ml per day in order to get the correct amount of nutrition and protein each day. (Keep in mind that he also can not have too little protein as then his body would start breaking down his muscles in order to get what it needs to function). At the time of the appointment James was getting 1085ml per day. They felt that this was fine because he has been doing so well. He is growing, a little faster would be nice but not necessary. If we can slowly increase what he gets that would be okay, but there is no point in doing that if it’s just going to set him back. They said they would contact me if his blood work showed that something needs to be adjusted but I haven’t heard from them, so he seems function okay on what he’s getting. Since that appointment we have managed to bump him up to 1110ml per day. At least that’s what the pump is set for. We always measure the same amount each feed, but do not consistently have the same volume left over. A friend of ours (who works in a NICU) told us that this was because with every feed, the line (part of bag, but what wraps around the pump) stretches out a little more, making each cycle of the pump smaller. Initially, our coverage only allowed one bag per 5 days. (So that’s 25 feeds per bag.). Since our friend kindly informed us of this stretching, we use a bag for 2 days (10 feeds), and have noticed that the excess after the feed is more consistent. We now have coverage for 2 bags per week, but after seeing this result, we’ll stick with using more, even if we have to pay for the bags ourselves!.

None of the DNA tests have not come back yet. In September they got hung up at the border because of issue with James’ OHIP card, so almost 4 months later we’re still waiting for the final confirmation. This test will only deal with the specific gene that they feel is the problem, it will not look at his entire DNA map.

James had a bone density test in July which we never heard results on. This is because there is not really anything they can base the test on since there are so few children that have this test done. This test will serve as a guideline for the future and he will continue to be monitored to catch any problems that may arise due to osteoporosis .


Tuesday, November 7, 2006
Another Pediatrician visit.

We reviewed what to do with James when he gets a cold. The end verdict was to go by our gut instinct. High fevers and rapid breathing are what we watch for. We should watch if his breathing goes over 60 breath per minute (bpm) or becomes laborious. She also prescribed puffers/inhalers for when he had a cough. It is best to start him on them as soon as he has a cough to try and prevent problems (although we have never seen that they actually help him). We can also alternate Tylenol and Ibuprophen (every 2-3 hours) to maximize the fever relief and try to keep it in check, although they really won’t do to much to bring down the fever when it gets as high as his do.

In the past couple months James has been relatively stable (in comparison to the summer) and we also seen the sweating go away. We felt that since the excessive protein was likely the cause for his instability, an Echo would no longer be necessary now that he was stable. Our doctor agreed and we will not proceed with it at this time.

It was also agreed that we no longer have to consider James milk intolerant, but just protein intolerant. Taking him off milk helped because milk is high in protein but there is no indication that he is actually allergic to milk. This doesn’t actually change his diet because due to his colitis, he cannot have lactose.


Friday, November 10, 2006
This time it was a visit to the Endocrinologist. This visit was set up already in the summer when James was in the hospital. Back then, his growth hormone levels were low and some patients with LPI require hormone therapy to help them along.

The Endo Doc did not seem too concerned about James at this time. He said that sometimes the hormone levels go low when a person is ill. James is low on the charts, but he continues to go upwards at his own pace. He will need to be kept an eye on, so in six months he needs to go back to see where he’s at. We still did some blood work to see where he’s at so that we have a baseline for later. That was an easy appointment. :)

The months of September and October were not too overly busy, we had 1-2 days with appointments a week but after spending 5 weeks of the summer in the hospital it was great to be home and able to establish a routine again. With Marietta starting Grade 1 and going to school everyday we had no choice but to develop a routine. Thankfully James quickly adapted. After James’ last stay in the hospital we did struggle with him for several weeks to teach him how to go to sleep on his own. He had spent so much time in the hospital where we would always lay down beside him to get him to go to sleep that he thought we needed to do this at home too. So for a few weeks we found ourselves laying on the floor beside James’ bed to get him to go to sleep. We slowly weaned him off of this process once his tummy/g-tube was feeling better and we knew he could handle a bit more crying (stomach muscle action)

Maybe September and October were just the calm before the storm. I will admit that we began to relax a bit and felt more confident that James’ health was finally becoming stable. November started with a bang and hasn’t slowed down since. We’ve had appointments 3 days almost every week (the one week that we didn’t we ended up in hospital for 3 days), sometimes more then one per day [I must clarify - they have not all been for James...I have my own list :( ]. James did make it through his first cold without too much trouble, making us even more confident. He did have one night where he had fevers and his breathing picked up, but that was the peak and the next morning he was back to himself. Doctors had warned us about the winter months but this gave us some more confidence that his health was picking up. It was a short lived confidence.