Running Through the Snow!

Parker going for a stroll.

Mom and Monkey posing for a pic. See the fluff? Looks like snow, eh?

Another image of just the snow.

Fluff balls, or snow balls?

AC Milan will sign him in 2022.

Parker making sure that the floor is still there.

Nothing New

I have not written in a couple of days but things here have continued to have been going well. My wife and I went to the City Center to do some site seeing together before Parker begins his isolation in early May. Nana and Gaga watched the little monkey while we went.

They have so many shops here in Milan, so it is nice to get off the metro at Loretto and walk to the Duomo. We enjoy looking at all of the sites, people and shops here. While on the Metro, we are frequently met by someone with an accordion who plays for a short while and then goes around with a cup asking for money. The last two time we had been on the Metro, it was kind of sad because we saw a man and his wife going from train to train with their baby and young child. I guess they feel that they have a better chance of getting money if they use their kids to make people feel bad.

This afternoon we will all go to Fidaty (grocery store) to get some food for dinner. We are having Gnocci and tomato sauce with some form of meat. It is our staple dinner here and I enjoy making it. We have some eggplant in tomato sauce left from yesterday that is great on rye bread. So, as always, we should be eating well.

The weather has continued to be very nice here; however, the trees are shedding some form of "fluff" that floats around through the air. I am sure that some people must have a very difficult time with it as there is quite a bit of it. I have spent most of the past couple of days dodging it. We did ask how long we should expect this unpleasant visitor and were told that a it stays in the air for about a week.

Parker has another trip to the hospital tomorrow for his ADAGEN injection. I am not sure but it may actually be his second last injection. FOREVER. We will know more tomorrow.

Ciao for know! I hope the weather is nice in Toronto.

Central Line Used Successfully

It is hard to believe that we have been here for six weeks now. So far, everything has gone very well. Today, when we went to the hospital they used the central line that Parker had placed under his skin a week ago. We were a little worried how it would go the first time they used it, my wife actually left the room; however, it did go very well. It was much easier than drawing blood from his arm. i am sure when it is time to have an IV done we will see a world of difference.

Nana and Gaga have been a big help since the arrived almost a week ago. Parker really enjoys having them here and Gaga loves pushing him on his trike or stroller wherever he goes.

Parker is currently sleeping, as is Gaga, while Mommy and Nana try and grab a few rays on the patio outside of reception. I was outside for a little bit but to be honest, it was a little bit warm for me. That is why I decided to come inside to write today's blog article.

We moved room a couple of days ago so that we had access to a second bedroom while Nana and Gaga are here. The view is extremely nice from this room and it makes spending time in the room much more enjoyable.

Parker's walking has gotten quite good the past week. He still is much faster when he crawls but he does seem to enjoy standing up in the middle of the room and then taking a few steps to something close to him. He would probably walk alot further if he did not start clapping for his accomplishments all the time. Parker seems to like being recognized for the good work that he has been doing. Bravo, Parker!

My Italian is continuing to improve and to be honest, so is my wife's. As she says, I have an ulterior motive for learning Italian as my mother was born in Italia.

Our friends from California are coming to Italy in the next week or so with their son who will also be going through with the procedure. We look forward to meeting them in person. It will be nice having someone else who speaks English and understands what we are going through.

We miss everyone back home! Ciao!

Happy Birthday Auntie Franni and Uncle Mikey

Parker is about to go down for his nap and I was going to make rice balls again today but I have decided that rice balls and risotto on the same day is a little too much rice. As a result, I have some time to write today's article.

This morning Parker, daddy, mommy and gaga all went on a walk around Milano Due. We decided to take Gaga to the hospital to see what it looked like and where we spend our time when we are not walking around our residence. On our way home we took a detour to extend our walk an extra couple of kilometers.

Since Nana and Gaga have arrived it has made life a little bit easier, as my wife and I can work on something and they are able to occupy Parker's time. In addition, it also helps to have them around when Mr. Stinkerbobinker shows up. A couple of days ago when he showed up as a result of a post-surgery antibiotic it was good having Gaga keep Parker quiet while mommy wiped down the little monkey and Nana used the bidet to rinse the stinkiness off his clothes.

Although my wife is a little afraid of the ducks that chased her a couple of weeks ago, I am not and decided to get a couple close images of the large ducks who were feeding close to the edge of the water.

Our friends from the east coast of Canada have arrived in Maryland for their SCID ADA gene therapy trial. I know they will probably be overwhelmed the next few months being so far away from home; however, reading about their daughter I am sure that they will obtain strength from her as we do from Parker. I wish them all the best in their daughter's treatment.

Also, before I do sign off for the day, I would like to wish my brother and sister a VERY happy birthday today. Make sure to do something special to celebrate your day!

Parker Home In Time To See Nana and Gaga

Parker is finally home from the hospital. Actually, we did beg that they let us bring the little guy home yesterday and they obliged. It was a difficult couple of days but Parker as always made it so much easier for us.

We went into the bone marrow transplant unit (it was the only bed they had available for us) on Tuesday at five in the afternoon. We actually stayed in the room that Parker will live for the 30-45 days during the gene therapy procedure. It houses the actual isolation area along with a room surrounding it for one of us to stay in and sleep. It is definitly much different then Sick Kids in Toronto but it does the job it should.

Parker was quite quickly placed on an IV to give him fluids in hopes that his veins expand and make the procedure of inserting a central line into his vein more easily. They found a vein quite quickly in his arm so that the pain (delore in Italian) was minimal. Mommy stayed for a couple of hours with me before going home. I did not want her walking back to the residence in the dark. The IV was attached to a long tube and with Parker as active as he is I was afraid that he would tangle himself in it while he slept (overly cautious father) so with every movement that Parker made I opened my eyes and checked in on him. For that reason, and the fact that I am not accustomed to sleeping in a small hospital bed with my shoes on in a very warm room I did not sleep. Was I tired? Yes, but I know that any other parent would have done the same thing. At 7:15am, my wife arrived at the hospital to see us as Parker had his surgery just after 8am.

When they came for the little monkey, mommy gave Parker a big kiss and daddy carried him along side the doctors and nurses who would perform the surgery to the pre-op room. Parker looked around the whole time catching the smiles of every doctor and nurse that he passed.

When we did arrive at the pre-op, Parker sat patiently on the hospital bed that was waiting there for him. The anesthesiologist came soon after and inserted a liquid into his IV. I wondered what was so funny as Parker began to laugh uncontrollably while she did this. Then she told me it was the medication. So, as she took Parker from me and he looked at me as she walked away it made it a little easier seeing him smile and laugh over her shoulder.

After I returned to the room my wife and I came home so I could take a quick shower and change my clothes. When we did return to the hospital, my wife waited in the hallway in anticipation for her little boy to return to her. All of a sudden we saw Dr. Aiuti with out little man in his arms as a nurse pulled the IV pole behind him. Of course my wife and I ran to him. "It went very well", he told us. "It will probably be a difficult afternoon for us since Parker will most likely be in some pain and quite tired."

To be honest, it was not that difficult at all. Parker slept and watched movies with his mother and me for most of the afternoon. It was funny because at exactly 7pm, Parker stood up in his crib and all at once he had all of the energy back that we had come accustomed to.

Parker received quite a bit of fluid (sugar and salt) through a IV for the next 24 hours, so as a result, he was not that thirsty or hungry. That night, Parker had some extra cables attached to him to monitor his respiratory rate and heart rate after his surgery. It was nice seeing numbers that were normal for a child his age instead of the ones we were accustomed to seeing when he was first diagnosed with ADA deficiency.

Again, I asked my wife to go home before it got dark as I wanted her to get some sleep. Parker slept quite well, and I was able to get a good four hours of rest throughout the night. When my wife did arrive at 7am in the next morning I went home to grab a couple more hours of sleep before returning. I had planned on asking if we could take Parker home that day (yesterday) as he was doing extremely well and we wanted to surprise his Nana and Gaga. They had not expected to see him as they were coming in to Milano after visiting hours.

The team did oblige our request and Parker got to come home for the afternoon before his Nana and Gaga arrived. I know that they had worried that Parker would forget who they were but as soon as they came in the door Parker crawled over to Gaga, pulled himself up and requested to be put over his shoulder. It was a nice surprise for both Nana and Gaga as well as the little monkey. It will definitely make life alot easier with them here.

Parker is currently taking a nap, so I thought it would be a good time to write today's article. Ciao!

He's such a Trooper!

Just an extremely quick message to let everyone know that Parker's strength, determination and humour has made a very dreaded day much more bearable. Parker is doing very well right now. He had his surgery and bone marrow

harvest first thing this morning and typical for the little monkey has not had any pain meds since. He is such a fighter! I am sure that the little guy is in pain, but I think that he is just being strong for his mommy who cries at the mere thought of his pain. My husband is staying with the little guy again tonight. I am so thankful to have a husband who is so caring, loving and committed to our family the way he is. He wants me to get my rest so that I am not as overwhelmed with everything. It is also easier for him to be there in case something medical needs to be done and he needs to help hold the little wrestler down. Besides, his Italian is much better than mine! Regardless, I just want him to know how much I appreciate and love him.

We are counting the hours until Nana and Gaga arrive. We keep telling Parker and I know that he is going to be so excited when he sees them and can finally go on Gaga's shoulder again. It will be so nice to have the support and comfort as we trek through some difficult days ahead. My parents have always been very supportive of us and we want them to know how much it means to us that they are making this trip.

I am sure that daddy will write again soon. When I left my two boys tonight they were both very happy. Parker was bouncing around in his crib and laughing and daddy was just happy to see his little guy in good spirits. I hope that Parker does not keep his daddy up again tonight. I think that he is taking "Boys Night" a little too serious and doesn't realize that they both really do need their rest!

Ciao!

Poor Little Guy!

This may be the last time I write in a few days as Parker is going in to the hospital for a few days. He is getting a bone marrow harvest for back up reasons in addition to getting his central line put under his skin.

Parker will be put under for the procedures and will have some medications to keep him from feeling the pain when he wakes up. Parker has only had one other time in which he had a general anesthesia and surgery. It was when he had his lung biopsy done. We were so upset when that happened at about six weeks of age. Tomorrow's procedure is more of a routine procedure but you never want to see your child have to go through anything like this. My wife and I are doing our best to stay positive. Me? I am good at concentrating on the positive but my wife has a much more difficult time with it. I just try and remind her that this is just one of the things that must be done so that Parker can have a normal life.

On a more positive note, Parker started walking a couple of days ago. His longest run was 12 steps in a row. I am pretty sure that the little monkey should have no problem being a professional walker by the time he begins the actual procedure in mid-May.

Parker is in for a little surprise on Thursday (if he is home from the hospital). Otherwise he will get it on Friday morning. Parker's Nana and Gaga are coming for a visit for a couple of months. I am sure that they are worried if Parker will remember them but my wife and I both know that he will.

I just wanted to thank everyone again who visits Parker's site. All of your support is so appreciative. It is so nice to go to StatCounter and see how many people came to the blog each day. We are arriving at the magic number of 150,000 hits in the next few days; something that we never could have imagined a year ago. We are glad that so many people are becoming aware of Severe Combined Immunodeficiency. Parker's form ADA deficiency is only one form of many different types. It just happens to be one of two that currently have gene therapy trials currently being conducted (X-Linked SCID is the other form).

Ciao per oggi! (Translated directly into English is Bye for today -- I don't you actually say it that way here in Italy)

More Pictures! Mmmm... Rice Balls!

It always makes my wife happy, and Auntie Natalie when I just put images. For that reason, here they are. Alot of them.

What is Parker looking at?

What a cool looking guy.

Now, mom is looking too.

Parker relaxing on his trike.

Cool boats in the leghetto.

Definitely not a sailboat!

Daddy was more interested in the battleship then the sail boat. They had lots of boats going into the water but we only saw a few.

The baby ducks wanted to get out of the way, QUICK!

Everyone in single-file.

I don't remember lining up like this when I was little in the hallway.

This was more like it.

They were a little tired after all the excitement.

The saffron risotto for the rice balls. I promise to show you.

The mozzarella for the rice balls.

The assembly process.

Almost time to eat them. Trust me, they were good. Very good.

Stop Looking at Him Like That!

It was another beautiful day here in Milan. We again spent much of it walking around with Parker, as we take advantage of every second of Parker not having to be in isolation during the months of May and June. We have the date for the actual procedure now and are expecting to enter isolation during mid-May for just over a month.

We have continued with our Mediterranean diet. Pasta, risotto and salad for dinner and usually pizza or salami and cheese on fresh bread for lunch. Recall that I purchased the Riso and risotti Italian version of La Cucina Italiana when we first arrived in Milan. Although I do not completely understand the dialogue that goes with the images and recipe but I am able to get the idea of the recipe. With the ingredients I have to work with I am at an advantage. Last night we had assorted mushroom (funghi misti) and celery (sedano) with prociutto crudo (raw ham). In Italy, you can purchase a package of vegetable at the supermarket that is meant for making a broth (brodo vegetale). I have never made my own vegetable broth before as I usually purchase the store bought chicken broth. I must say it is easy to do and makes the world of difference.

We decided to take a trip to Auchan today. Auchan is similar to a Super Walmart. It took a bus ride and a subway to get there but we survived very well thank you. We were told to get off at the Vimodrone station and we could walk from there. We misguided a little as the next stop was very close to Auchan. The way back was much easier as we went to the closer metro station. The only big problem was the copius amount of stairs we had to climb at the station. Most of the stairs were at the station to close to Auchan. It seemed much easier if I just picked up Parker's stroller and carried it up and down the stairs instead of having my wife help me. Parker seemed to like it.

One of my pet peeves about taking Parker through busy areas is having to explain to people (in Italian) why he is under the shield. I wish I could just hold a sign as I walked with Parker as many people look at us, probably thinking we are terrible parents for keeping Parker under a plastic shield when it is so nice out. I am not sure how it sounds but I think I am getting better at explaining the shield over Parker:

Siamo della Canada. Il Bambino male. Lui no sistema immunatario. Quando molto persona noi protegerre lui con la scudo di plastica. A Italia per cura sperimentale. Casa a la residenza per sei mesa.

Tomorrow the stores are closed because it is Sunday so we made sure to get everything we needed to cook dinner today. We had the most amazing rice balls here in Milano 2. They are different than the ones my mother makes at home (hers are great too) but here they use a saffron risotto as the rice base. The middle can be an assortment of different things. We have tried the cheese ones in addition to the meat, peas and cheese balls. I have purchased all of the ingredients so that I can make them tomorrow. I promise to take images of the process and final product for the next blog. I am really looking forward to tasting them. My magazine has the basic recipe for the rice balls. So between that and the ones I have eaten I am pretty much good to go.

I just wanted to let everyone know back home that we miss you all very much. We cannot wait for the procedure to be over and Parker's numbers to rise to a level so that we may finally come home and spend time with everyone. I am sure that anyone who has ever been away from their loved ones for an extended period of time can attest that you really miss your family friends.

For the people in North America, Buon Pomeriggio.

Quindici Mesa? Si... La Bambino Molto Grande!

I decided to write this morning instead of later this evening since I have not been very regular in my writing as of late. It is just after nine in the morning here and mom is currently feeding Parker. We have an appointment at the hospital in a couple of hours for an ADAGEN injection as well as another test. We hope to get some more results from some of the tests that he had in the past week or so. I would like to share more specifics about the tests that Parker has been going through but I have been asked to not be specific in regards to the tests of Parker's treatment. I have always said that this was an experimental study and I wanted to respect the fact that conferences are meant for the sharing of results from these kinds of studies. For that reason, I am being extra cautious when it comes to how specific I am. I do apologise but I do promise to let you know when the more important things are occurring. For example, we will be going into the hospital for several days starting on the 17th to get a central line placed under the skin in addition to taking some more bone marrow. The amount of bone marrow that will be taken will be quite a bit more than last time (Parker does have a good number of BM CD34+ cells). As a result, there will be quite a few more tiny holes in his leg and hip.

Parker absolutely loves his new mode of transportation. I think what he really enjoys is that he has much more area that he can move around in. I mean, he can look behind himself, try and bend down to touch the wheels, and point in any direction without being obstructed by the stroller. We usually go out in the morning with his trike and then when we need to go the supermercato we use his stroller with the shield.

We decided to go to the city centre yesterday, again. We took the 925 bus to the Gobba station and then took the green line to Loretto (connecting red line) and went up to street level. Normally, we would go to the Duomo station that is on the red line but yesterday we wanted to walk along the streets and do a little bit of window shopping. There are so many nice stores to see. Many that you just don't see in Toronto. We picked up a baseball hat for Parker since his other ones are too small for his big head (big brain). At the same children store we picked up a new training bowl with spoon. We will try it out later today. Also on our walk we went by a sports store (football/soccer). They had the different Italian Premier league uniforms there. They had an official AC Milan jersey and shorts for Parker. At almost 15 months he would have been took big for the 12-18 month uniform and the next size was for two year olds. We decided that we would pass on the uniform for now. Maybe before we leave and he is a little bit bigger we will get him the two year old uniform. To be honest, I think it would have almost fit him now.

They have a patio with a large table and chairs for people to sit out on during the day just outside reception on our floor. Most people use it to go out to smoke but my wife and I have been alternating during Parker's nap time to use it as a reading area. My wife picked up an English language novel and I have begun studying for my EJB certification. I completed my servlet and JSP certification (93%) before we left for Italy and had decided that I would have quite a bit of time to read while in Italy so I brought a few books to keep me occupied.

My Italian is starting to get a little bit better. I learn a couple of new words each day. Yesterday it was letto. The maid wanted to know if she needed to do anything with the bed as my wife had already made it. We were trying to figure out what letto meant so I just looked it up. I also find myself explaining to people why Parker has a shield over him even though it is not raining and quite sunny. Alot of little children come to see Parker in his stroller and try and touch him through the plastic. That is usually how the conversation about the shield begins.

Well, it is another nice day here. And once again my wife has said that we should walk a lot today. I looked at her and said, "How much more can we walk?" Regardless, we will spend the afternoon walking.

My apologies if people are having difficulties logging in to write comments. It must be a problem with blogger because I know that I have not changed anyone's settings. We hope that everyone has a great week-end and can enjoy some nice time outside like we will be.

Ciao!

Who said Life Was Supposed To Be Easy?

I would love to write an article today but I had a couple of things unrelated to Parker that were upsetting to me to say the least happen today that I am not up to writing an article today. For that reason, I am posting only images of Parker on his new tricycle.

He definitely loved his new mode of transportation.

Parker hanging out on his new Trike.

Parker checking out the sites.

Parker and his Mommy!

My new Wheels!

Average Day

Today was an absolutely beautiful day here in Milan. The temperature was in the high 20s (Celsius scale) with a cool breeze to help you beat the heat. I am not sure if it gets more humid as the summer approaches but the weather has been ideal so far. I am not sure if most of you have checked but there are a couple of new videos of Parker for you to download on the right sidebar. I thought I would mention that now before I forgot to later.

We started the day as usual. Parker woke up at 5:30am and we granted his request of a bottle. At home, we would let him cry but in a hotel it is not fair to the people living on either side of us. Of course, this lets us give him a med and change his diaper at the same time. Then, it is back to bed for a couple of hours before he wakes up at 730am and he gets to watch a DVD until 8:15am when mommy and daddy decide that they are ready to get up to feed the little monkey.

Today, it was an ADAGEN injection at 11am at the hospital. We always find ourselves there for some time before Parker gets his injection. We finally made it home today just after 12. Parker then had a quick lunch and off to bed he went. We decided that we would take the little guy to the Duomo again for some sight-seeing. We had also seen a tricycle that we could push him in instead of his stroller for our walks. I have never seen them in Canada or the United States so we thought we would get it for him. I know I will spend tomorrow morning putting it together for him. Parker will have an absolute blast on it.

We got home this evening close to eight. My wife stresses at the time Parker goes to sleep at but I try to get her to understand that it is a different culture and we are under different circumstances here but I don't think I am getting through to her. She just came to bed and told me "again" that Parker has to go to bed by eight tomorrow. I respond, as I always do, "Sure."

We have met several people here in Italy. Many of them ask what Parker's name is. Of course, we tell them but they do not normally understand unless I pronounce it the way my Italian friend had told me. Pronounce every character and emphasize the r. It is funny how quickly they understand it when I say it like that.

Parker will receive his central line in just over a week. That will be an operation where they will stick a tube into his vien. The tube will be accessible from under the skin so he does not try to pull it out. From then on anytime they want to give him anything, or take anything (except bone marrow) they will just use this access point. As a result, Parker will be hospitalized for about three days. I feel terrible for the little guy, as I am sure everyone else does, but it is a necessary procedure and it will keep him from pulling the line out, as most children would try to do. The line will eventually come out. The resulting scar should be the size of the average size pinky finger.

Tomorrow, I will have more pictures than the zero I have today. So, check back then for Parker on his new tricycle.

Ciao!

Lost Images

We have quite a few different images we have taken in the past week that we have not had a place to put in the blog so I thought that I would use today's article for some random images. That and I am too sad to write after the Islanders won last night in the shootout. There is also a new video for you to see of Parker of him opening his Pasqua treat.

Parker talking to the neighbourhood cat

Remember the duck that chased mommy?

Parker's first time ever on a swing. Mommy did clean it very well first.

Parker takes a bite out of his chocolate Pasqua lamb.

Veal and olives in a sauce made of olive oil, white wine, lemon, garlic, shallots and capers.

He honestly did not stop smiling the whole time. If there was a way to get him on the slide at the park I would try.

The duck, again.

Parker feeding himself. Well, sort of, as he stares at a Backyardigans episode.