Did I Hear You Have a New Friend?

I am telling you, if you take one day off from writing it leaves alot to be written the next day. Last night we found out that Parker had some more tests today. He would be having another hearing test, an ultra sound of his stomach and a visit by the ears, nose and throat specialist. To prepare for the ultra sound, Parker would have to have finished eating by 8am this morning. The ultra sound was scheduled for one in the afternoon.

We arrived at the hospital at 9:45 for his hearing test. Yes, we all know that Parker can hear. Just say to him, "Where are the lights?", and he will look up, find the closet light and point to it. We also know that he can hear because he passed the hearing test he had the other day that played different frequencies and measured his brain activity. However, this hearing test is different. It plays sounds in one ear and checks to see if he hears them through the bone in his other ear through a probe that is placed in the ear.

Well, we have learned the word dopo and aspeta here in Italy. Things are done at a very different pace here. Parker spent almost two hours in his stroller, much of it under his shield, thirsty and hungry. When it was time for the hearing test Parker was quite upset having to wear anything on his head. He was hot, hungry and a little upset to say the least. Mommy had left at just the time the test was taking place, as she was seeing if it was a problem that we would be late for our next examination. Regardless, me and two other nurses held Parker while he yelled and tried to squirm away. The test was done quite quickly, and when I asked if it was "norma" they replied, "no norma". Apparently, the test returned results that Parker had little to no hearing. I was surprised, upset and waited to speak with an English speaking doctor. She explained that we were not to worry. Soon after we went to see the specialist who told us that Parker's nose and throat was fine but he had secretions in his ears.

It made sense that there was some fluid in his ears as he was sweating and crying. But the doctor felt that this may be the reason for him failing the hearing test. In addition, secretions can lead to infection so they wanted to start Parker on amoxicylin as a precaution for seven days. In ten days they would repeat the tests. Now, if I were at home, where I spoke the language and was not part of an experimental treatment, I would probably have called the doctor by now to have some things rechecked before beginning the antibiotic. But, my wife and I said to each other that when we came to Italy we would be much more accommodating when it came accepting any treatment that the team want to perform on Parker. We were difficulty to deal with at times while in Toronto but to be honest, I believe as does my wife that we were right every time.

Why do I think Parker failed the test? It was not because of the secretions. That was sweat in my opinion. He failed the test because the ear phone was never placed on his ear. In all of the excitement, everyone way concerned with keeping the apparatus in one ear but not the other. Me? I noticed at one time that the head phone that was supposed to play the noise in the one ear was not on his ear but resting on the chair as he squirmed. I did not say anything because I was too concerned with the language barrier and Parker not cooperating. For this reason, I do not worry about either the secretions or the failed hearing tests. Parker had 4mL of the antibiotic without a problem this evening and he will repeat the test in just over a week.

As for the ultra sound we will not know the results for a few more days. Although we did learn something from it. Here in Italy, there is not sanitiser on every wall so we worry that someone is going to touch Parker who has touched someone else prior to him. So, when they performed the ultra sound, after being told Parker was going to be starting antibiotics we requested that the people performing the test wash their hands. Now, this is where the language barrier became a problem again. Apparently they were saying that they were going to be wearing gloves but we did not understand. Trust me, I do understand that guanto means glove now and guanti means gloves. So, when I hear that word I will feel much more comfortable and I will now be able to say gloves in Italian.

On a lighter note, Parker met a new friend today. We and Parker met a previous patient in the study (recall Parker is the twelfth). They are from Europe. Her numbers are higher that Parker's are currently on PEG-ADA so that is definitely good news. They are here for their follow up visit and she underwent some of the same tests that Parker did today. The family speaks Italian and French so between my wife and I we were able to communicate fairly well.

In addition, we also met two other patients while we have been here. So, we are getting to see other families who are going to or have recently gone through gene therapy with their child.

I have been asked to keep the images of the food here coming, and I apologise that I did not take an image of tonight's dinner as it was incredible, but I do have one of last night's asparagus risitto. For those of you who want the recipe, I may post it here at a later date.

Check in this weekend for another article. And click here for the article from last year on this date, and since I did not write yesterday you can click here for the article that is a year ago from then.