Wednesday, February 27, 2008

Golfing "Fore" Parker

There are often many obstacles thrown at us in life. Some we are able to understand quite clearly and others often take a lifetime to try and figure out. If there is one thing that I have really learned to appreciate through our journey with Parker's disease is that everyone has a story. Some share their battles and struggles openly while others share pieces because the pain is often too fresh and the heartache too painful to put into words. We have tried our best these past two years to remain as positive as possible and to make Parker's life as normal as it can be given our situation. As parents, we have made many decisions to create a lifestyle for Parker that would be safe despite what it would mean on many different levels. These decisions have consequently lead to many changes both on personal and professional levels. We have adjusted our lifestyle and routines in order to create the most conducive environment for our son and for this we will never have regrets. As many of you know and can even relate too, having a sick child has a tremendous financial impact on a family unit. One day you are both doing well in your careers and the next you are both on leaves stressing and worrying about how you can possibly financially survive such a traumatic ordeal. We have been very fortunate with the support we have received from family, friends and strangers throughout this entire process. It is an amazing feeling to know that there truly are so many generous, good hearted people who truly want to help others. We could never thank people enough for their support whether it be emotional or financial. Support on every level is what has allowed us to cope with and survive this struggle to date. I am sure people can appreciate how horrible it is to be in a position where you need to ask for help. We never imagined our life like this. Pride can often be our worst enemy because it is so difficult to open up to others about issues which are so personal and upsetting. However, sometimes we are forced to do this and as a result people are often very receptive and genuinely want to help. Family and Friends are organizing a fundraiser for Parker on Sunday June 1, 2008 called Golfing "Fore" Parker. If you are interested in buying tickets, selling tickets or helping with the event in any way then we would greatly appreciate it. We are also looking for companies to sponsor holes, donate prizes and/or auction items. If you feel that you would be able to help in this way then that too would be extremely appreciated. The information for the event is as follows and I will leave an e-mail address if anyone is able to help out in any way. We thank everyone in advance for their continued support to our family and we hope to see everyone there! (Daddy hopes to write an article for everyone soon and be sure to check the Toronto Star this week-end for another article on Parker!)

Date: Sunday June 1, 2008 with a 1pm shot gun start
Where: Four Seasons Golf Club
Price: $125 which includes 18 holes of Golf (scramble format, 4 players per team only)
Shared use of a power cart - 2 persons riding
A starter pack, including tee, ball marker, green repairer,etc.
Dinner: Served buffet style with choice of:
9oz Sirloin Steak with sauteed onions and mushrooms
1/2 BBQ Chicken or 8oz Chicken Supreme
Vegetarian Lasagna or Fish
Served with Salad, Roast Potato, Medley or Mixed Vegetable, Assortment of dinner rolls
Assortment of Dessert Cakes with Coffee or Tea

Dinner only: $55.00 per person (76 tickets only)

For more information, to buy or sell tickets or help with this event, please e-mail:

Wednesday, February 20, 2008

Bye, Bye, Bottles!

It's amazing how when a child reaches two, parents suddenly start to think of all the things that need to be accomplished within the next year. For us this means a few important things- saying good-bye to bottles, changing to a twin bed and toilet training. Parker has always loved his "ba". I often tell people how it is quite common for Parker to go and sit in our upstairs loft and call for his ba when he has had enough and just wants to go to bed. He has never taken a soother, but his bottle has definitely been an item of security and enjoyment especially at bed times. A couple of weeks ago, I decided to stop his afternoon bottle and have him start using a "big boy" cup for his milk. This has gone quite well. We have begun a routine where Parker sits with me and has his drink while watching an episode of Little bear. Shortly after, I put him to bed and generally he falls asleep well. Night time has been a little different. I think that this is a combination of not seeing daddy much and not having his security item with him. The past couple of nights he has cried more than usual and wants to be snuggled before going to sleep. Overall, I am very happy with how well he is making this major adjustment. I knew that it would not be easy and I am not sure if there is ever an easy time to stop a routine and end something which has been a major level of comfort for a child's first two years of life. My goal was to have bottles finished prior to our return trip to Italy and I am confident that this is a goal that Parker is successfully accomplishing with a little help from mommy and daddy!

This past week-end was a very busy week-end for us as daddy was in a hockey tournament with family and friends. It was so nice to see my husband so energized and excited for something again. Between him and Uncle Mikey, I know that another tournament will soon be approaching and it makes me very happy to see the bond that they share as brothers. It was so nice to have the opportunity to do something fun with both of our families and better yet- to win their division. Way to go, champs!!

Today was a special treat for us as my friend Sarah visited us again with her precious newborn son. Parker and I want to thank-you very much for coming to visit us last week and this week. Maybe this can become a weekly thing? Parker absolutely loves baby Reid and was so excited when he saw them again. He kept staring at Reid and laughing. It is going to be so wonderful when Parker can play with all his cousins and friends because he is such a lovable and kind little boy. His energy and zest for life are truly remarkable.

The Toronto Star will be doing another article on Parker in a few days (possibly Saturday's paper). We have always been extremely happy with every article that they have written and want to thank them very much for continuing to follow Parker's journey.

Lastly, I want to end by thanking a couple of people for some fundraising that they have done for us. My husbands aunt (Kelly) recently did a spice fundraiser for us over the holiday season. We want to thank her and everyone who supported our family by either selling spices or buying them. It is very much appreciated. We would also like to thank Yorkview Public School for their ongoing support for our family. They have started a "Pennies for Parker" fundraiser at their school and we want to thank everyone involved at the school as well as the students for their generous contributions. It is the support we get from others both financially and emotionally that enables us to get through our most difficult days and for this we will always be extremely thankful and grateful.

Parker fast asleep. He always looks so precious when he is sleeping...

Daddy is the best goalie EVER!

Parker saying hi to his new pal baby Reid!

Thursday, February 07, 2008

Excellent News!

Well, we continue to try and occupy our time the best we can without daddy. I must admit it is very difficult and we miss him so much. This has been a tremendous change for our family and we are trying to adapt the best we can. We know it is very hard on daddy and not a minute goes by that we don't wish we could all be together.

Although, things have been different for us, we did receive some very encouraging news from our doctor a couple of days ago. Last week, Parker had blood drawn to check the function of his T cells. We have all been very pleased with how well his lymphocytes have been rising and with that the doctors wanted to ensure that they are actually working. We are thrilled to report that when Parker's T cells were tested, they do in fact measure to that of a normal control group. Although, Parker's numbers are nowhere near normal yet, it is extremely encouraging to know that the T cells he does have are actually functioning. This was the best news we could have received and the best possible scenario for where we presently are post gene therapy.
It has given us as parents more hope and assurance that the gene therapy is actually working and for this we are incredibly happy. Now, we will continue to do what we always do- protect Parker and make sure that he is never in danger of being exposed to unnecessary germs which could potentially make him very ill.

We are really looking forward to meeting with Dr. Aiuti and the medical team when we return to Italy in the spring for Parker's one year follow up. It is hard to believe that in a few months we will return to Milan. We are actually really looking forward to our trip. We have been missing Italy very much lately. The lifestyle we created and our daily routine are things we have begun to really appreciate since our return to Canada. As strange as it may sound, it felt like we lived a much more "normal" life in Italy despite the stress we had. I am sure that when the warmer weather approaches, we will be able to do a lot more and establish a nice routine here. I guess it is more the boredom and lonlieness of being confined to our home all day that can be tiring and draining.

Anyways, staying on a positive note, we are extremely appreciative of the medical team that we have in Canada and Italy and are forever grateful to both teams for giving Parker a fighting chance at eventually leading a normal life. I have no doubt that all our dreams are about to come true! I would like to leave you with a few pictures from our baking session yesterday. Parker had a blast and it is something I am going to try and do a few times a week with him. Don't mind the pajamas- who says the Christmas spirit can't overlap with Cupid!

Baker Parker in action. Mixing is a very important step in creating the Perfect muffin!

Are you sure this is what it is supposed to look like Mom? I am not sold on this yet!

Parker smells everything before even considering taking a sample!

O.K that was great. When are we baking again?