Friday, March 30, 2007

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.

Wednesday, March 28, 2007

He Hears You!

So I totally scored just now. I was sure I was putting Parker to bed just now but Mommy said I did not have to after she had already started. For that reason, here I am writing the blog while she gives Parker his bottle.

Of course, today was another busy day. Parker was in the Corriere Canaedese today, he also had his hearing and eye sight test done today. In addition, we had a great adventure in the latter half of the day.

Let me begin with with the Corriere. This is an Italian Canadian newspaper that has been following Parker's story for several months now. They had called me a few days ago wanting to do an updated story since we left Canada and arrived here in Italy. You can check out the article by doing a quick search on Parker and the corriere in Google. One of my best friends who is Italian said she read the article in Italian and said it was very good. I translated it in Italian and, although it was good, I am sure it was much better in Italian.

Now, Parker went to the San Raffaele for a hearing and sight test today. It meant he would have to have several wires attached to his head and remain very still and quiet while they measured brain activity during a sight and sound test. Parker passed the hearing test with flying colours, as he was able to hear the different frequencies without any problem; however, Parker was not so co-operative during the sight test. As they tried to flash the light in his eyes as I held his hands so he did not pull the probes from his head and my wife held his head still, he yelled and screamed. They will not able to take this test. So, for now, we do not know if Parker is faking the fact that he can see all of the little pieces of dirt on the ground that he has been attempting to pick up.

The CT Scan and MRI Scan both came back showing that he has no abnormalities in his brain or thorax (lungs). He passed both of these tests with flying colours. We are very happy to see that Parker is three for three so far. Despite that ADA gene, he appears to be a "normal", healthy little monkey. We are so happy about the results so far. As a parent, you just want to minimize any pain you can for your child and we would do anything to make things a little more bearable for our little monkey.

This afternoon was a lot of fun. My wife had decided that she really wanted to take a certain path that we had never taken before. I was a little reluctant at first due to all the potential mud we may find due to the rain, but agreed that it would be nice to see something different. Having said that, about 15 minutes into our walk, we came across a clothing and shoe outlet (Puma) and then the most amazing grocery store. I have never seen a more beautiful fish counter in my life and know that my friend David would appreciate it just as much as me. Perhaps I will show it to you one day, David! To say that Tracy was in her glory is an understatement. She was so excited to see a store which resembled that of a Loblaws superstore in Canada. It turned out to be a path that was very much well worth taking.

I think Parker enjoyed the adventure mostly because he got a shiny new soccer ball out of the whole deal. He has not figured out that it is about kicking the ball as he was much more interested in throwing it into the ground to watch it bounce back into the air.

Well, I am feeling rather tired today and will sign off for now. I promise that there will be some pictures posted tomorrow for you. Check back tomorrow when you wake up and there will be pictures waiting for you. I am sure that we will be heading back to our favourite store after Parker's injection tomorrow.

Don't forget to check out last year's article. Ciao!

Tuesday, March 27, 2007

More Tests Tomorrow

It was yesterday when Parker had some major tests performed on him. Today you would never know that he had anything done on him. He is playing just like a regular little boy. He spent most of today climbing over everything that he possibly could. I must say that this little monkey is the toughest of all monkeys.

It is just after eight in the evening and mommy is putting the little guy to bed. Mommy and daddy are quite full after having pasta, salad and wine for dinner once again. I have to say once again that everything here tastes so much better. Today for lunch, my wife passed on the mustard so that she could savour the the salami and cheese on the fresh bread without having any harsh flavours getting in the way.

Tomorrow we will be heading to San Raffaele for a couple more tests. He will be seen by the hearing and sight specialist. I am sure that Parker will pass these tests will flying colours.

Both my wife and I have really been working on our Italian. I always sit by the television with a dictionary in hopes to pick up a word here or there that I can translate. We have both been watching Grande Frattelo religiously. For those who are not familiar with what that is it is the Italian version of Big Brother. Poor Massimo gets picked on each day by most of the other cast members. The show is a little different then we are accustomed to in North America. It seems as if the viewer choose who gets voted off. Also, the show airs every day with that particular days events, unlike what we are accustomed to where it shows three times each week and you have to read the spoilers to find out what is happening as it happens.

My wife is addicted to Young and the Restless and we finally found out that is shows on channel 4 each day at 10:30. The only problems are that it airs in Italian and it is almost two years behind the north American telecasts. Oh well, at least we have seen the episode (yes, me too) and we will more easily be able to understand what they are saying in Italian.

My wife came back into the bedroom, so Parker is probably sleeping now. I think we are going to try and watch some television in Italian tonight. Remember, you can check out the article from last year at this time by clicking here.

Monday, March 26, 2007

Who Says There Are No Super Heroes

My wife is about to put Parker to bed now and I am writing the blog after our dinner and wine. To be honest, the little monkey is the strongest and toughest little guy I will ever know. Yes, he was sedated for the procedures but when he did come to, he was as tough as nails. Well, a wobbly nail.

I had mentioned yesterday that Parker would be under a general anesthesia for all of his procedures today but he was actually just very heavily sedated. We arrived at the hospital at 9am but it was about 11am that we took Parker for his MRI where he was sedated. It took about 10 minutes for the sedation to take effect but once it did they carried him across the hall for his MRI. It took about 30 minutes for the MRI to complete and although we do not have to results yet it seems to have come back quite clean.

Then, they took Parker for his CT Scan of his lungs. I am unsure of the results, but it only look about 10 minutes. Then, we went across the hall where they performed the bone marrow aspiration. It took longer then the previous examination but it apparently went well. They took the bone marrow from his hip bone to see how well he produces different type of cells. We are hoping and expecting that he produces a good amount of stem cells.

After the bone marrow aspiration, the did a few swabs to see if there are any germs in his throat or nose. He was starting to wake up during these tests, so he was not as cooperative but he did do well.

Of course after this he did wake up and was quite hungry. He were told to give him some water to make sure that the sedative did not cause him to vomit. He drank about 8 ounces of water without a problem so when we got home we gave him the same amount of whole milk.

We were given some medication in case he did have some discomfort because of the bone marrow aspiration but to be honest, we never had to use it. When he got home, he was still quite drugged up but he was still very active. I did make a video of the little monkey that I will post of him playing in his playpen afterwards but I won't be posting it until tomorrow . So, check it out tomorrow (Check now!).

Mom just came into the bedroom after putting the little monkey to bed. I am very proud of the little monkey today. He is definitely tougher then anyone else I know.

Check out the article from one year ago today. How? Click here.

Sunday, March 25, 2007

Parker Undergoes Tests Tomorrow

As always there is quite a bit to write today, especially since I did not write about Italy and Parker yesterday. However, I want to make sure that I write about our upcoming day.

See, tomorrow morning Parker has his first set of major tests. Parker will have a MRI of his brain, CT Scan of his chest, Ultra Sound of his stomach and his first bone marrow aspiration. All of these tests will be performed under a general anesthesia. In addition, while we are at the hospital, Parker will receive his ADAGEN injection. We are of course not expecting any surprises as a results of the tests. Of course his MRI and Ultra Sound should come back clean. The CT Scan should show some scarring as a result of the proteinosis and infections he had prior to his diagnosis and the bone marrow aspiration should come back showing that Parker does a very good job at producing BM CD34+ cells.

The bone marrow aspiration will be the most painful but he will be asleep for it. Adults generally stay awake for a bone marrow aspiration so it should not be too bad. We were told that the MRI should hake about 45 minutes, and the aspiration and CT SCAN should be about 10-15 minutes each. So, we are hoping that he will not have to be asleep for too long.

We will be going to the hospital for 9am (Milan time tomorrow morning) and they will most likely begin the procedures soon after. Because of the anesthesia, we will have to get up this coming morning at 3am so that Parker can have a bottle. He will have to go under on an empty stomach so he may be cranky in the morning.

Also, on Friday Parker had to undergo an ECG to check his heart function for the the anesthesiologist. He did pass it but he did struggle most of the time as he tried to play with the wires, pulling them off whenever he could. The cardiologist laughed at the reading when he saw it but said it should be okay.

I do promise to write tomorrow about how his tests went. I think we should get the results in 24 hours after taking them, so you may have to wait for that. As soon as this phase of the treatment is over, I will write about everything else that has bee going on here. However, for now, this is what I am focusing on.

Most of you would have noticed that I did post a link to last years article yesterday. I have decided that I will continue to do that each day. So, you can click here to read the article from one year ago today. It is always nice to look back.

Saturday, March 24, 2007

2nd Wedding Anniversary

I promised my wife that I would put some images from our wedding two years ago in Mexico. Last year we spent our first anniversary in isolation, so Italy is definitely an upgrade. The three of us had a wonderful day together.

Read the article from one year ago today by clicking here. By the way, the clocks change in Italy today so we will now be six hours ahead of the time in Ontario.

Thursday, March 22, 2007

Simple Things (Post by Mom)

It's amazing how the things which so many people rightfully take for granted can make the world of difference to someone else. I find myself being that "someone else". Since our arrival in Italy last week, Kevin and I have finally been able to experience some of the things which often become second nature to many parents. For the first time, we have been able to bring Parker to the grocery store, in and out of buildings and areas which are not confined to the hospital. For the first time, we have been able to hear people expressing how beautiful our child is "bello, bellissimo" are words we frequently hear. I mention this today because it has made me feel so happy. In this very brief time, I feel so blessed to be doing little things with Parker which every mom should be able to do from day one and not even think twice about.

I have noticed a positive change in Parker as well. His stroller, which used to be a struggle to put him in as it was usually only used for visits to Sick Kids, has become a novelty for Parker. One mention of the word and he is at his stroller in seconds waiting to go on his next adventure. Today while we were walking to the hospital, we saw another dog which came rather close to Parker in the stroller. If only I could have captured the pure excitement and happiness in Parker's eyes and face. It was so sweet, innocent and genuine.

I often look at my little guy in pure amazement. He is the strongest person I have honestly ever met (a quality he must inherit honestly from his daddy). No matter what Parker has endured in this short time of life he always comes through with a smile and a laugh that is contagious. I think this holds true for many sick children. They are often so full of life and contentment with the simplest of things. Parker does not need a reason to laugh or smile- he just does. He is the happiest person I have ever met. I know that he will have many friends one day and that he will grow to be a very compassionate and loyal person. For this, I am very happy.

These past 14 months have been the most difficult months of my life. Sometimes this entire process actually feels surreal. Sometimes, I find it hard to believe that we have actually experienced the things we have. Sometimes, I am more than frightened about what is yet to come, but I know that we will continue to get through everything and Parker will be a healthy little boy. I would like to personally thank everyone who has supported us including my husband who definitely puts up with his share from me. Despite everything, he is always extremely positive and although he may not hear it enough I do gain a lot of strength from his positive energy.

I have always been a "home body". I am the first to admit that I love being close to my parents and family and I am very proud of that. I feel very fortunate to have such a strong bond with them and my brother. I know that I am also blessed to have many friends in particular my best friend Natalie who I consider a sister. I have always thought that people should consider themselves very fortunate if they can find a friend in their lifetime who they completely trust and can depend on. Friends and Family are imperative when you have a child who is fighting for their life. I don't think there could be any other time in your life when you could need people more.

When I began this message, I wasn't sure what I was going to even write about, I just knew that I wanted to write something. Now I think that the main message I want to get across is for people to really try and relish the simple things in life. Take an extra 5 minutes to snuggle your little one, pick up the phone and call someone you have been meaning to for some time and tell someone how much you love them just because you can. Take something that you would normally take for granted and turn it into something that suddenly has more meaning and thankfulness to it. Today I know that I am blessed to have some more normality in my life- no matter how small it may be. I know that there are other families who are eagerly waiting for my "simple thing" and for this I consider myself to be very fortunate.


Wednesday, March 21, 2007

Toy's for Parker

A week has passed since we have arrived in Italy and I cannot believe how much we have learned about the Italian culture since we have arrived. I have tried to report on as much as I could but there really is so much that we have learned.

For instance, the language. Would you believe that I actually had a woman believe that I spoke Italian? I keep my Italian/Inglise dictionary wherever I go, so that whenever I am in conversation with someone I can do my best to accommodate their language. Today, when buying vegetables for dinner I was able to explain what was wrong with Parker and that we were going to be in Italy for six months. For those of you who want to know in Italian. I tell them that Parker has no immune system and that there is experimental treatment here in Italy(sistema immunitario, no. Cura sperimentale a Italia). It is definitely much easier learning Italian here in Italy then at home in front of a computer.

My wife went with Bruna to the mall (sort of like a Walmart) for a couple of hours today. It is too far to walk so Bruna had said that she would take Tracy there whenever she wanted. Bruna is a very nice woman who speaks both Italian and English. Parker and I walked for the two hours while they were gone. I tried to take as many pictures as I could to let my wife know of our journey. Of course we did our regular shopping at Unes, the bakery and the vegetable shops, but we also took a little bit of the scenery in. Mommy came home just in time to give the little monkey lunch. Trust me, my legs are starting to get a little bit tired.

Parker was a very lucky little monkey today because mommy bought him some new toys. Two to be exact. One is a table with a bunch of different things to play with. A phone, some blocks with a bunch of little extras. The other was from the Fisher Price, Little People series. It is actually kind of funny because there is a mat attached to the Little people toy that contains all the different letters of the alphabet with animals on each letter. The thing that makes it different is that everything is in Italian. I found myself pushing the letters and learning the alphabet while Parker took his nap today.

Dinner today was once again very tasty. It was of course pasta and salad. The pasta was the regular shallots, garlic, with canned tomatoes and pinot grigio, but today I added some pancetta that I bought from Unes (pronounces ewness). The salad was also very similar to what we normally have. It was lettuce, fresh tomatoes, with olive oil, salt and balsamic, but today I added tuna packed in oil and fresh mozzarella. Can you image buying a ball of fresh mozzarella for 0.52 cents? That is still less than a dollar Canadian. My wife thinks that she is gaining weight, although I do not think so. As for me, with alll of this walking, I can only lose weight.

Parker has really started enjoying reading his books lately. Well, who knows if he actually reads anything, but he does like taking them out of the drawer and flipping the pages. Especially the Brainy Baby book. Every time I turn around I see him looking at it.

My cousin Allesandra called me this evening. Well, actually, someone on her behalf called me as she does not speak English. I think she is going call back soon and arrange a visit here. By the time she does come, probably soon, I should have picked up a few more words in Italian. Believe it or not, my Italian is better than her English. But again, I did have that woman fooled. I have met my cousin Allesandra when she came to Canada when I was in grade nine or ten. That was quite some time ago, but I do remember her.

My wife says I have bored enough people for one day and that I should sign off. A domani!

I needed some more text after I inserted the images of Parker's toys so I including a little bit of filler.

Here is the Italian zoo that is not only helping Parker learn Italian but also his daddy.

I hope that this will keep him from calling the front desk at the hotel.

Tuesday, March 20, 2007

Happy Birthday Nonna!

I am starting to realize that there is so much more to write about than there is when we are at home. We are in a different country living in a completely different home and Parker, my wife and I are all having our own different experiences here.

As I said before, Parker enjoys having so many things to interact with at his own height. Parker's newest interest is the telephone. For the past two days he has been going to the side table by the bed, which is his height, and taking the phone off the hook. This would not be so bad, but he is fascinated with the buttons on the phone. Furthermore, he pushes the buttons that are designed to call the front desk, operator and emergency. So, every time I see him go into the bedroom and turn right, I have to run in there after him.

Secondly, Parker has learned to understand what the word stroller means. We had said that whenever he gets a chance he runs over to the stroller in hopes that he gets to go in for a walk. As a result, we figured that this would be an opportune time to teach him the meaning of the word stroller. So, now whenever we mention the word, he gets all excited, stops whatever he is doing and heads right over to his stroller.

It has definitely been colder the past couple days so we have had to put his gloves and hat on him in addition to pulling down his shield to block any wind. We did walk for some time today, over two hours, but Parker stayed warm the whole time. Us, on the other hand were forced to wear a jacket and use our walking to keep warm.

Tomorrow, my wife is supposed to go to the mall with Bruna. She is an older woman which we met and happen to see almost every day while we walk near Unes. She is meeting her under the bridge (where the road is) close to Unes. Of course, we feel extremely safe with my wife going but I will give her the cell phone to take with her. I canceled our phones before we left, but they will work until the 22nd.

We did not have to go to the hospital today, nor will we have to go tomorrow. Parker has his injection on Thursday, so we will go then.

I have to say that we (not Parker) are having a difficult time sleeping while in Italy. We have not adjusted to the beds here, as they are much more firm then we are used to. I would compare it to sleeping on the floor with a pillow. Last night, we got about five to six hours of interrupted sleep as Parker decided to wake up every few hours. Regardless, we did decide to take a nap today while Parker was sleeping. It did help us a bit.

One of the other things I have noticed that are different here is the television. We get about 24 channels here for free and all of them are in Italian except three (2 German, 1 English (CNN)). To give you an idea of what we have watched on television I have taken some images. Currently, Big Brother Italian is near the end of its season, the finally of the German version American Idol was on yesterday, but what we see most of the time are television shows like "Chips". Yes, "Chips". I have not seen that show since I was six. The only difference is that it is dubbed in Italian. Hey Auntie Kate, Parker watched Sailor Moon in Italian yesterday. If yo can figure out the Italian language, this is definitely the place if you want a voice over job. Lastly, Parker has been watching a television show in the mornings here about some bubble bees. It is quite funny actually. If you can understand from the images great, if not, here was the plot. There are the two little bees that are playing and one of them gets caught by a preying mantis. "Mio Aiuto!", he yells. His little friend tries to find someone to help them, and all of a sudden a large scary looking bee comes out of the bushes to help and scares the preying mantis away. The only thing is is that the scary bee is actually a wimpy little bee that is trying to look all tough by wearing a mask with fangs. I don't think the images do it justice. It was definitely much funnier than the dubbed over smurfs we watched the day before.

Today, on our walk, we stopped by a couple of stores for our food. One, sold fresh vegetables, so we picked up some wonderful little tomatoes for our salad and some ridiccio for the pasta we purchased at the next store. Here they sold all kinds of fresh pasta, pizza and buns. First we purchased some cheese and ridiccio ravioli, and a few freshly baked buns and later we came back so that my wife could get some pizza for her and Parker for lunch. The pizza here reminds me of my Nonna and Nonno's pizza. Not only because of the way it tastes and looks but also because they cut the pizza here with scissors. The only other people I have ever seen do that was my Nonna and Nonno. This pizza has not thin crest like the night before at the Chinese Pizzaria but thicker crust. Much like foccacia. I have been kind enough to include some images of the store and the pizza. Apparently, my wife thinks it is very funny that I have used the words "kind enough", have you ever tried to write a blog each day with someone looking over your shoulder pointing out mistakes you made three paragraphs earlier?

My wife has told me that I have written enough for today, so I do apologise that you will have to come back tomorrow to read more about Parker's journey in Italy. Things are definitely a little easier at the moment as Parker will not have to go through any hardships for another week.

Everyone wish Parker's Nonna a Happy Birthday! Happy Birthday Nonna, from Parker. And to my mother and my Nonna, you were right. Meat and cheese on fresh bread tastes much better without mustard or butter.

A Domani!