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 www.2golf.ca
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

or

1/2 BBQ Chicken or 8oz Chicken Supreme

or

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:

golfingforparker@gmail.com

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!

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?

Changes....

Well a lot has happened in our daily routine lately. Daddy got a short contract job and has therefore been extremely busy. We are so happy and thankful that his hard work has finally paid off and want him to know how proud we are of him. My husband is one of the most dedicated, diligent workers I have ever met. Although this is only a temporary position, we hope that this experience and his strong work ethics will open the door to more possibilities. As I am sure you can all imagine, this has also had quite an impact in our daily lifestyle and routine. It is incredible how much you depend on someone and lean on them when you go through a life changing experience such as this. I know that this has made us stronger as a couple and although Parker's disease is a daily battle, he has had both of his parents at home with him for over 18 months. We share a special bond with Parker that is very difficult to even try and put into words. This transition has been extremely difficult for Parker as well. We both miss daddy very much and the energy and laughter that he brings into our lives. Parker has not been going to bed at night very well because he wants to make sure that Daddy is still home. For the past couple of nights we have let him stay in our bed for a bit to watch t.v before saying ciao! Although, he will not show it, I know that this has been very difficult for him. We are so blessed to have him in our lives and want him to know that we appreciate everything he is doing to try and make things a little better for us.

Last week one of my brother-in-laws colleagues held an event where she donated the proceeds to Parker. We would like to thank-you so much for this and want you to know how much your contribution and support means to our family. I am so sorry that it has taken this long to thank you on our site. Although, my husband has found short term employment, it will continue to be extremely financially straining on us with the loss of my income and the mere fact that we have both been off work for so long to care for Parker and provide him with the safest environment possible. A loss of income for 18 months for both of us has given us a tremendous amount of stress and worry. We sincerely appreciate all of the help we have received and are extremely grateful of any help we may get in the future so that we may continue to protect Parker the best that we can. If anyone has ideas or is willing to plan an event then we are very appreciative of this too.

Parker had his visit at Sick Kids on Monday and we are thrilled that his lymphocytes went up another 100 to a total of 870 now. The rest of his numbers remained relatively the same which makes us so happy. Our son is such a fighter and we count our blessings every day for the joy that he brings to our lives. I honestly feel so blessed to have a son who is so amazing.

Well, I must go and get ready for our day. The little monkey should be waking soon and ready to go full force. A special thank-you to Nana and Gaga who have been such a tremendous support to us. I am so lucky to have such amazing, supportive parents and we love you very much. Thank-you for your daily visits and helping me out so much with our new adjustment.
Ciao!

A 2nd Birthday Blast!

Mommy is just writing a quick blog today to share some birthday pictures from yesterday. It was such a special day for us and we want to thank everyone who was a part of it for making it so memorable. Parker had such an amazing time and wants to say a special thank-you to his daddy for making him such a fun cake. Parker already knows that his daddy is an amazing cook, but now a cake maker too! A Pablo cake last year and a Cars cake this year- who knows what next year will bring. Parker will definitely be able to choose and daddy will definitely make it happen. Thanks again everyone. We needed such a "normal" day!

I want to make cakes just like my dad when I am his age!

Wow! Can you believe that this is my cake. Isn't my dad the best!!

I figured I should let daddy help me with the candle since he did such a fantastic job!
This really is too cool!

Finally a moment to myself to enjoy all this chocolate!

Just having a moment with Nonno!

Auntie Frannie let me eat all the chips I wanted. I hope she stays like this forever!

Uncle Kyle is right up my alley- some TLC with the TV!

We thank our lucky stars every day for the gift of Auntie Natalie!

Even little guys need some down time the next morning!

Best Friends Forever!

Parker's Playtime with Jett

Parker got to spend much of yesterday with his cousin Jett as Uncle Michael and Auntie Katie visited their new niece. Parker always enjoys his playtime with his cousin.

I hope when I grow up I have hair like that.

Parker posing for the camera. He is one happy little boy.

Jett, after having a big lunch. If Parker ate like him, life would be much easier during meal times.

Is it a hug or a tackle? You be the judge.

Parker got Widgets for his birthday from mommy and daddy and he loves to share.

Mommy posing with cousin Jett. Don't be jealous Parker.

Parker and Jett working on their airplane mechanic skills.

Parker and Jett discussing a plan to get the taller folk to put on the Backyardigans.

Parker showing Jett where Gaga hides him gum.

Happy 2nd Birthday Parker!

Today, Parker turned two.

We are extremely happy to report that Parker will be celebrating his birthday with 1230 neutrophils and 770 lymphocytes. Here are some images from today. Check back on Saturday for images of his birthday party.

Life in 2008

So, things have not changed too much for us in the new year. My wife and I still spend most of our time at home with Parker. She plays with him most of the time and I spend much of my time preparing for a career in Java Development.

I have felt a little under the weather the past couple of days, so as a precaution I have left my wife and son alone. For the most, I have spent my time in bed reading. I even made a decision to not play hockey tonight in hopes that I will be better by tomorrow. Vitamin C, water, ginger ale, and Cold FX. That has pretty much been my diet.

Lymphocytes and Neutrophils have pretty much remained the same over the past month. Parker continues to have 600 lymphocytes and around 1100 neutrophils. We really wish that his neutrophils would return to a normal level as was expected after gene therapy but they still sit at the same number they have been 30 days post gene therapy. We will have to wait and see if they increase as his metabolites decrease further.

Parker has continued to be a happy little boy. He does have some new words, although his speech is hardly something to get excited about. That said, he does continue to strive in many other ways. He absolutely loves puzzles. He has a wooden puzzle of the letter of the alphabet that he can put together quite quickly. He loves playing with trucks and cars. He got a Go Diego Go jeep from his Nana and Gaga for Christmas that he loves getting in and out of.

He is strong. We call him Bam Bam. You know from the Flintstones. He loves lifting everything up over his head. The basketball net he got from Christmas he carries across his playroom on a regular basis. His bed mattress? If you put it on the ground he squats in front of it, picks it up, walks forward and then flips it over. All with that grunting noise that guys make when they are lifting up something heavier than they should.

Lastly, I would like to thank anyone who put us in their prayers or made a donation over the holidays. Things have started to get harder financially around here and we really appreciate any help that we get. Thank- you.

Merry Christmas - Parker's Second Christmas

I would first like to wish everyone a wonderful holiday season. Secondly, I have to say that we had one of the best couple of days in a long time. Dr. Aiuti emailed us Christmas Eve to let us know the results of Parker's six month follow-up of his gene therapy. The results were positive with some numbers increasing and other decreasing since September but in the end he said that Parker is pretty much inline with the other patients that did well. For now, we will continue going to Sick Kids every two weeks for IV and to get his latest numbers. His most recent results had his lymphocytes around 600 and his neutrophils still close to 1200. Parker's liver enzymes were very slightly elevated and just above the normal range so we will be looking for those to decrease at his next examination. If they continue to increase they will do an ultra sound to see if there is anything abnormal. Most likely (and hopefully) it is just a fluctuation.

On Christmas morning Parker opening his gifts. This year was much different that last year in the sense that it was less about the paper and more about what was inside. When he would get to a gift he really liked he would repeat "I want, I want" instead of going to the next wrapped gift. Parker loved all of his gifts and daddy is still putting things together the next day.

We followed the gift ceremony with Brunch with Auntie Katie, Uncle Michael, Jett, Nana and Gaga. It was another reason to stuff ourselves with food. After that, it was off to Auntie Katie's families for Christmas dinner. I have to say that the meal was absolutely incredible and it was nice being able to spend Christmas with family and friends. Parker also really enjoyed himself. It is nice being able to bring Parker with us when we do things like this. With no one sick it made it much easier for us.

I have uploaded quite a few images for everyone to see. Lastly, thank you to Canada AM for doing such a wonderful segment on Parker and his immunodeficiency. We really appreciate the time you took to share Parker's journey with others.

Parker and Jett working together to open up another one of Parker's gifts.

A Great Christmas Holiday.

Parker absolutely loves the Backyardigans!

Christmas Brunch. Yes, we have left overs this morning.

Parker going through his stocking from Santa Claus.

I think the Leafs could use another good player.

Parker and Gaga watching the movie "Cars".

Mommy and Parker on Christmas morning.

Parker and Jett's First Christmas together.

A Gift From Auntie Natalie and Uncle David.