Tuesday, October 31, 2006

Happy Halloween 2

Dinner has just passed for most children and now they have started to run from door to door yelling "Trick or Treat". I remember what Halloween was like when I was just a child. Like most holidays my family made a very big deal about it. My father would take my sister, brother and I around the neighbourhood so we could collect candy from each and every house that had a "Jack-o-lantern" on their front porch. We did this while my mother gave out candy at our home.

My parents would literally spend days getting the front of our house ready for October 31st. My mother would dress up like a witch, and my father would set up the Hi-Fi system so that spooky sounds and music could be heard from doors away. Parents who were familiar with our home on Halloween would drive from blocks away just so that their child could get a glimpse of our home that night.

Tonight, we sit here with the lights out in our home, without a pumpkin or jack-o-lantern on the front porch. We have chosen not to participate this year for the slight chance a child comes to our door who is ill. We feel terrible but we know that next year we will make it up to the children in our neighbourhood.

Today being Tuesday, we went to Sick Kid's so that Parker could get his ADAGEN injection. We figured that we would show Parker off in his costume to the doctors and nurses in the immunology department. Parker was absolutely adorable and everyone thought he was so cute.

Now, we have been waiting for the results for the x-rays that were taken on Parker to check for skeletal abnormalities a couple weeks ago. The report is finally in, and although we have only been told that there really are no surprises, our staff immunologist will go over the results with us this Friday at Clinic. So, check back then for a complete update on how Parker's x-rays went.

After we left the hospital we took Parker to see his Nonni, my Nonna. She was so happy to see Parker and absolutely loved his costume. She has not been sick for some time and displayed no symptoms of being sick, so we decided to let her hold Parker while we had a little lunch. We do not let many people come in contact with Parker for obvious reasons, but we felt comfortable letting his Nonni hold him for a little while. It definitely made her day.

Lastly, we wanted to make sure that Parker's Nonna and Nonno saw him today so they came over to see Parker quickly with his cousin. We decided to take advantage of the opportunity by grabbing a quick image of Parker and his oldest cousin. A definite rarity.

My wife has just taken Parker upstairs and hopefully he will fall asleep soon. We are both looking forward to next year when the three of us can decorate the house for Halloween and give out treats to the children in the neighbourhood. I wish everyone a happy and safe Halloween.

Happy Halloween

I figured that I would write a quick note for now with a picture of Parker in his Halloween costume for people to see. We have a big day ahead of us and I promise to write an article with more images when the day comes to an end. Most of you have probably noticed by now that Parker was not in the Toronto Star today. Maybe next Tuesday.

Monday, October 30, 2006

Christmas Already?

I have been fighting with blogger the past day and a half and it is finally working well enough for me to write today's article. Being home for the Christmas holidays we have been contemplating how we might be able to integrate our family into our celebrations. Obviously having a child with a compromised immune system it is difficult to attend large family gatherings. That said, we have finally figured out how we will be celebrating this year's holiday.

My family is Italian and when we were younger we always celebrated Christmas Eve at my Nonna and Nonno's. My family in addition to my cousins, aunt's and uncles on my mother's side would all go to their home for Christmas dinner. It would always consist of lasagna, meat balls, sausages, breaded veal, as well as many other things that my Nonna and Nonno would spend all day in their basement cooking. Before dinner my sister and brother in addition to all my cousins would give the adults a break by spending about an hour going door to door, through the neighborhood singing Christmas carols. Then, after dinner we would all congregate around the dinner table and play Bingo in Italian.

Eventually, my mother took over the tradition and what once was an intimate gathering of family on my mother's side grew to a spectacular celebration of family and friends. Each year on Christmas Eve, our family from both sides, in addition to many of our friends congregate to my parents' home for a large feast and a couple of hours of Italian Bingo. You can now see that under these circumstances we would not be able to spend Christmas with my family and friends. However, we are extremely delighted that this year's festivities have been modified to include Parker, my wife and I. We wanted to be able to have Parker and his cousins spend time together, so for this year, the celebration has gone back to its roots. It will be similar to the celebration that me, my sister and brother grew up with. This year, Parker's Nonna and Nonno will be having lasagna, meat balls, sausages and breaded veal with their children and grand-children just like my Nonna and Nonno did back when I was just a child.

Parker has never played with his cousins before, to be honest, other than the time in which they crawled over the car to get a peek at him, he has never even seen them. Now, of course, Parker will not be touching his cousins or even touching the same toys that they are, but it will be nice that Parker will be able to have some parallel play with my nephews.

I am extremely excited and looking forward to Christmas Eve with my family. I just hope that everyone stays healthy over the holidays so that we may spend Christmas Eve as a family. As for Christmas day, Parker will spend the morning opening gifts with his Nanna and Grand-Dad and then we will have Nonna and Nonno over for dinner so that the six of us, along with Parker may have a wonderful Christmas dinner that I shall prepare.

Some of you may think it is a little strange to speak of Christmas so early in the season but I was so excited about all of the accomodations that people have made for us that I wanted to write about it today. That said, tomorrow is Halloween and we are also excited to dress Parker up in his costume and show him to the nurses and doctors at Sick Kid's. We have also decided to drop by my Nonna's home tomorrow so that she may see Parker in his costume.

Lastly, we are expecting to see the article about Parker in tomorrow's Toronto Star. So check out the Star tomorrow to see if Parker made the Tuesday edition.

Saturday, October 28, 2006

Halloween is Coming

I did not write yesterday and I did not want to go a whole other day without having something here for people to read so I thought I would bring my coffee to the computer and write today's article before I do any studying for the day. My wife is trying to get Parker down for his nap for the morning so I figured this is the best time to try and get the article done.

I guess I should start with how well Parker has been sleeping. We are very pleased to say that once the little monkey goes to sleep for the night he does is out until his morning feed. That said, that doesn't mean that I am not up four or five times throughout the night checking in on him. What is it about being a parent that you are compelled to check up on your child even when you know that nothing is wrong. My wife falls asleep sometime just after 10pm, but for some reason I am unable to and find myself lying next to her watching television until after one in the morning. We turn off Parker's Hepa filter during the evening hours allowing us to hear every little move that Parker makes through his baby monitor. To be honest, the noise that comes through the monitor is usually non-existent once the Hepa Filter is turned off. However, every once in a while I hear the little monkey through the monitor moving around in his crib. I know this is completely normal. I know that Parker must change positions in his crib five or six more times while I sleep through the night, but for some reason I feel compelled to get out of bed and make sure the little guy is covered properly and in what I would consider a comfortable position. Last night, on two occasions after I checked on him I caught him hiding under his blanket in the corner of his crib. It was funny to see since we all know that Parker hates being covered by his blankets.

We had purchased Parker's Halloween costume a couple of months ago on a trip we had made to Niagara Falls, New York. The costume was 12-18 month in size and actually looked quite large when we looked at it without Parker in it, so we decided to make sure that it fit yesterday. Not only did it fit, but Parker looked absolutely adorable. We placed him on his mat downstairs and he did not care for a single moment that he was in a very bulky costume. Parker still occupied himself with the familiar toys around him. Tuesday is Halloween and it is also a day in which we go to Sick Kid's. We are very excited to show off Parker in his Costume to the doctors and nurses at Sick Kid's.

I am very pleased to notice that the number of people that populate the site have risen in the past few weeks. One of the main goals of this site is to educate people on this disease, in addition to the benefits of genetic therapy. I know that I have not written an scientifically based article in the past while, and many of you are probably pleased about that, but I will be writing one shortly to get people educated about what gene therapy is and its benefits.

Thursday, October 26, 2006

Twenty Three Pounds

As I write today's article I can hear my wife shouting downstairs to me to inform me that Parker has had quite the bowel movement. I am not sure when having a bowel movement goes from being cute to grotesque, but apparently we are not there yet. I have decided to shut the door to my office as I usually do when I am trying to do work so that if she calls me to give her a hand I can honestly say I did not hear her.

I have to apologize to everyone ahead of time as I am expecting this to be a shorter article. I have spent the past hour trying to decide what I will write about and to be honest I am at a loss for words.

I guess I will mention that we did go to Sick Kid's today to get Parker's ADAGEN injection in addition to having Parker give blood. We normally go on the Friday, but there seems to be a large convention this weekend for immunology and none of them will be able to be at Sick Kid's tomorrow. We were hoping that immunology would have the results for Parker's x-rays but they did not. I am assuming that we will find out next Friday when we meet with the staff immunologists. He looks normal, and he acts normal, but until they tell us that his skeletal system is normal we will not know. Now that Parker is 23 lbs 3.2 oz we want to make sure he does not have any difficulty bearing his weight on his legs.

For those of you who are wondering how Parker slept last night, he slept well. He did sleep through the whole night and only got up at 6:30am for his morning feed. We normally put him back to bed afterwards in hopes to catch another hour of sleep but when my wife put him back in his crib, and then returned five minutes later after bringing some things downstairs he was sitting up, with his face pressed against the side of the crib, as he looked out at her smiling. I guess, Parker was rested enough from his undisturbed sleep that he was ready to play.

As I said, today's article is shorter and I don't hear a raucous coming from outside my office so I think it is safe to open my door, to head out into the kitchen and grab something to drink. I promise to write something with more substance tomorrow, so please check back then and I will have a great article with many pictures for you to look at.

Wednesday, October 25, 2006

Parker's Pals

I have recently heard from my contact at Pope John Paul II that Parker's Pals have really been doing a phenomenal job getting people aware of Parker and his battle with ADA deficiency. They are doing several fundraisers and we are extremely appreciative of everything that the students and teachers at Pope John Paul II Catholic Secondary School have done for us.

Although we are unsure of an actual date for when we will be going to Italy to take part in the experimental treatment, it is nice to know that we have the support from so many people so that we may keep Parker healthy and an ideal candidate for a successful treatment.

I just came down from upstairs where my wife is trying to put Parker to bed. He had gone down at 6:30pm and then awoke shortly after. I thought I would give her a break by holding him as I rocked back and forth in the glider, singing the alphabet to him in the deep voice that he has come accustomed to hearing from me. Unfortunately, the little monkey is very tired and as a result just wants to be snuggled. Every few minutes, he lets us know how tired he is crying in our arms. After listening to Parker periodically cry in my arms for 10 minutes she decided I was no closer to getting him to bed then she was, so she decided to give feeding him the rest of his bottle a try. As a result, I came downstairs to write today's article.

I had mentioned yesterday that Parker has been waking up in the middle of the night again to play for extended periods of time. Last night, we heard him at about 2am through the monitor playing for a good 30 minutes. We decided that we would go in there and give him a bottle as it usually puts him to sleep. It did. Unfortunately, it was three hours later that he decided he wanted to get up and play again. We decided not to let it go the whole 30 minutes before going in to see him. I am sure that there are many parents out there itching to tell us to let him be through the night, but we have decided not to. With Parker having to spend many weeks without us in the hospital at night we have chosen to be there for him when he awakes in the night. With his two episodes last night, Parker was quite the tired and cranky little boy this afternoon. We hope that being so tired tonight, he will have a much more restful and undisturbed sleep.

With Christmas coming up, I have already started looking at toys that I want to give to the little monkey. Being home for Christmas is definitely one of the goods things about not taking part in the study until 2007. I already told my wife that little monkeys do not like clothes for Christmas. He wants cool toys that he can play with and learn from; so, that is what he will get this year from Santa Claus. Cool Toys. I think I am looking forward to Parker's first Christmas more than anyone. What is it, October and I am already writing about it? It is just so nice to know that we will be home and not in a hospital for Parker's first Christmas. With this, we will make sure that it is a very special day for all of us. I know that it will be these memories that will keep us going during some very difficult days ahead.

Well, it sounds like my wife is back downstairs. She must have gotten him to sleep. Let's hope it lasts.

Tuesday, October 24, 2006

Nighttime Pictures -- Updated

I had woken up this morning expecting to go to the Toronto Star web site to read an article about Parker. However, at 5am when I came downstairs while my wife gave Parker a bottle I noticed that there was not an article about Parker to be found. I am not sure why it is not there as we were told it was supposed to be today, but we are getting used to being pushed to different dates, so it is not really a big deal. The story was just to be an update story so they may be using it for a different day. We left a message this morning with the health reporter at The Star to see why it was not in today's paper. As soon as I found out, I will let everyone know.

Today is Tuesday. That means that Parker gets his Septra, which I gave him this morning and we also drive in to Toronto to get him his PEG-ADA injection. Last Friday, Parker had his full body x-rays taken and we are waiting to find out the results of those x-rays. Recall that one of the side effects of ADA deficiency are skeletal problems. So the doctors wanted to see if Parker displayed any. We hope to hear from a doctor to about the x-rays, but will not be surprised if we don't.

I had mentioned that Parker had been waking up in the middle of the night to play with his blanket. We figured two nights ago we could sneak in there when we heard him playing to see if we was sitting up, as he rocked back and forth with his blanket. We did not exactly find him that way but he was happy to be surprised none-the-less. I have included some images of us trying to get the little monkey back to bed. The lighting is not the greatest in the pictures as it was pitch black in the room at the time they were taken.

Please check back later today to find out it we know anything about the x-rays and why the article was not in the newspaper today.

UPDATE - The Toronto Star will be using the story next Tuesday as there was not room for it in this Tuesday's edition. It is not a story that needs to be in today's paper so it can be postponed. As for the x-rays, the report was not in the system yet; however, his lungs did look clear. We will meet with the doctors as soon as there is a report in the system.

Sunday, October 22, 2006

You Don't Need Rainbows to Tell You the Sun is Out

As I sit down to write today's article I look past the monitor in front of me, through the window as I watch the rain come down. I see a leaf float by on the road as it makes its way to the sewer only a few doors away. It feels as if it has rained quite a bit the past month and sometimes it feels that that is all it has done.

Now, I know that lots of different kinds of people visit this site and each have their own reason for coming. I don't try and understand each and everyone's reason for coming to the site but I do try and make sure to write something for everyone as long as it pertains to our situation. With that, I do know that there must be other families in similar situations as ours who do come to this site to see how we are handling the cards we have been dealt.

It is not easy having a child who's future is undetermined. Of course everyone's future is undetermined but for the most part there are certain things about your child that you do not expect to have to worry about. Will my child be able to go to school and have friends like most other children, for one.

As I sit here writing, I reflect on a song that I recall singing to Parker when he was first admitted to Centennary Hospital in Scarborough before being diagnosed with ADA deficiency. The song is from a movie with Doris Day and the lyrics are as follows:
When I was just a little girl
I asked my mother what will I be
Will I be pretty, will I be rich
Here's what she said to me

Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be

When I grew up and fell in love
I asked my sweetheart what lies ahead
Will we have rainbows day after day
Here's what my sweetheart said

Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be

Now I have children of my own
They asked their mother what will I be
Will I be handsome, will I be rich
I tell them tenderly

Que sera, sera
Whatever will be, will be
The future's not ours to see
Que sera, sera
What will be, will be
The song consists of three versus and I could probably spend quite a bit of time writing about each one on its relevance to my life, but there is one that I find more relevant than the others in this particular situation.

The particular verse is the second of the three, and reads, When I grew up and fell in love; I asked my sweetheart what lies ahead; Will we have rainbows day after day; Here's what my sweetheart said.

I have heard numerous times that the stress of having a sick child is one of the most difficult things for a marriage. To be honest, I know of many marriages that have crumbled under the stress of having to turn their lives upside down due to their child's illness. I am sure that there are at least a few people that visit this site who can attest to that.

I think I am writing today's article to those few visitors who are going through something similar as to what my wife and I are. There are probably days that you find extremely difficult. Days that you may find yourselves extremely upset with each other. There will be times in which you would hope for at least one rainbow. I know, I have felt that way.

However, when I do find myself feeling this way I realise that although I cannot control the future and what it brings, I am able to control how I let it affect me. I realise that through these difficult times it is my wife that I need more than anything to help me through this. I also know that she needs me to help her when she feels overwhelmed. I try never to forget this.

I had recently noticed that my lawn had started to look like a small forest as I have not been able to cut it due to it being so wet. But today, as I watch the rain fall on the lawn outside my home, it helps the fertilizer make its way into the soil. I was able to do some yard work yesterday when the sun was out. It was even warm enough to take my jacket off as I did it. Although, I did not see a rainbow, the sun was out and the sky was clear and even though it was only for a short while, my wife and son watched me cut the lawn from the open doorway leading into our home.

Friday, October 20, 2006

Post 175 and 75,000 Hits

Yes, it seems as if the number 75 has some significance today. I had been watching statcounter as I posted a new article each day and I could see the two numbers converging on each other. Not only is this the 175th article that I have written for this website, it comes on the day that we had our 75,000 hit to the website. I am very pleased that we have had so many visitors to this site and that is the reason that I write each day and have been able to accumulate so many articles on Parker and his battle with ADA Deficient Severe Combined Immunodeficiency.

Now that I have gotten all of the back-patting out of the way I will now begin today's article. We had quite the day at Sick Kid's today. We of course go for Parker's PEG-ADA injection every Tuesday and Friday, but in addition to that Parker had to get a set of full body x-rays. The procedure took about 45 minutes and consisted of about 20 separate x-rays covering every square inch of his body. The reason for the x-rays of his skeletal system is because skeletal abnormalities are a common side effect of ADA deficiency. The average height of a male ADA deficient SCID is less than five feet six inches and closer to only five feet for females. As a result, the doctors wanted to make sure that there were no major skeletal problems.

I knew when I heard that it was going to take about 40 minutes that Parker was not going to be enjoying himself. He absolutely hates being restrained and we all know that you have to be perfectly still when you are getting an x-ray. As a result, I along with two nurses held Parker in 20 different positions as he was x-rayed from everything to his foot to his skull. Sometimes they wrapped his legs together so that it would be easier to restrain him as he tried to get out of every position that we had to hold him. Other times his head was placed in a clamp so that he would be unable to move it. I felt absolutely terrible for him. He screamed and yelled for the whole duration of the procedure. The tears streamed down his face as he struggled. Of course, the technicians were amazed at the strength of my nine month old son. When it was all over, my little boy was back to his old self. He laughed and smiled at the technicians and was just happy to have daddy hold him and give him kisses on his cheek again.

We will not know the results of the x-rays probably until Tuesday when we next go to Sick Kids. But to be honest, although I want everything to be perfect I would be very surprised if they found that he didn't have a least a small abnormality in his skeletal system. Regardless, my son is strong and no matter what is thrown his way, he will persevere.

While we waited for one in the afternoon to arrive so that Parker could get his x-rays done, we met with the Health Reporter from the Toronto Star. She was extremely pleasant and very professional. Parker's story is slated for Tuesday's edition of the Toronto Star in the GTA section. So either check it out online at thestar.ca or grab a local copy of the paper.

Lastly, I figured I would mention something a little more on the jovial side. My wife and I still use the baby monitor to listen in on Parker while he sleeps. Of course, we are trained now to wake anytime we hear anything come through the monitor that rests on the floor beside our bed. Well, last night, we heard Parker talking through the monitor at around 3:30am. We figured he was rolling over or had maybe shifted positions and the noise would subside shortly. However, this was not the case. Twenty minutes later, the talking and shuffling was as prevalent as it was when we had first heard it. With that, my wife decided to get up and check in on him. What did she see? Parker sitting in the middle of his bed, holding his Winnie the Pooh blanket, rocking back and forth. Just after she spotted him, he turned his head, looked at her and smiled. I know this because I heard the giggling from him through the monitor. Who would have thought that my son was a night owl? It is now, just after 7pm and my wife should be coming down shortly after giving him his bottle and putting him to bed. We think that after all the yelling, crying and fighting that went on throughout the x-ray he should sleep through the night without getting up at 3am to get a little play time in. Oh well, if my son wants to get a little play time in tonight, so be it. He deserves it after the day he had.

Thursday, October 19, 2006

Nap Time or Play Time?

I shall begin by saying congratulations to my sister and the rest of her family, as she gave birth to a 7 lbs 13 oz baby boy on Tuesday evening. Although my wife and I try not to go places where there is an increased risk of coming in contact with germs we made sure to attend the birth of our nephew William. It was definitely a very exciting time for everyone involved and I even think my sister would admit Tuesday was fun.

Today, we are having Parker's Uncle and aunt over for dinner along with Parker's Nanna and Grand-dad. We did not get to have a family Thanksgiving so we decided that the six of us would have our own family gathering. I have always enjoyed entertaining as I love to cook and when we purchased our home before Parker was born I anticipated on entertaining on a regular basis. However, under the circumstances I have been unable. I am extremely excited that today I will get to make Osso Bucco with a Wild Mushroom and Asparagus Risotto.

I did not mention it in an earlier post, but we decided to have a portion of our home professionally cleaned. My wife spends quite a bit of time cleaning as you can imagine and I do my part once in a while as well, but we decided to have someone come in to clean all the windows in addition to giving the bathrooms a good clean. They were here for a good six hours and made sure to rid every piece of dirt. We were very pleased with their work and as a result I thought I might mention them here in the blog. With that, if you need a very good cleaner for your home, you may want to check out the same one that we trusted, Clean and Dusters.

We got a call from the woman at the Toronto Star who took over the position as health reporter. They wanted to meet with us tomorrow at the hospital so that they may do a follow up story on Parker for Tuesday's edition of the Toronto Star. As a result, we will meet them after Parker's ADAGEN injection and before he goes for his x-rays. So check out Tuesday's edition of the Toronto Star.

Now, we all know that Parker has decided that he does not enjoy naps in the afternoon and as a result he chooses not to partake in them. That said, we decided to pop into Parker's room yesterday morning about ninety minutes after we had put him down. Of course, when we looked in we did not see a sleeping baby, but instead our son sitting up holding his blanket in his arms as he rocked back and forth in his crib. Since we had not checked on him since we had put him down earlier that morning, we are unsure if he had ever gone to sleep. Well, at least until later that day. Parker pretty much let the cat out of the bag during his dinner time feed. Parker fell asleep in his high chair right in the middle of his feed. So, I guess our little monkey likes to choose his own times during the day for his naps.

Tuesday, October 17, 2006

A Fun Day

I always feel bad when I login to statcounter and see that a few hundred people have already come to the site for the day and I have yet to write an article. For that reason I shall push aside my book and write today's article.

My sister is being induced today. I remember the day when my wife went into the hospital to have our baby. The day before I had her working her tail off. We cleaned the basement of our still very new home so that there was not a piece of dust to be found. She was in charge of all the vacuuming. I also made sure to have her walk up and down the stairs repeatedly in hopes that I might trigger something. Well, sure enough the next day she awoke and felt as if something was a little bit different. I apologise for the squirmish but it seemed to me that her water had broken. It was not dramatic, but I knew exactly what it was. When she wanted to go back to bed, I persuaded her to grab her bag, get in the car and take a trip to the labour and delivery at Centennary.

She was a little bit embarassed when she told the nurse she thought her water may have broken. The nurse was a little annoyed and probably thought this was just another couple coming in prematurely. Well, after doing the cough test it was apparent that she was not to be going anywhere and that she would be having our little boy that day.

Of course, we called our family and had them come to the hospital to keep us company while we waited for my wife to finish dialating. My wife walked up and down the hallway outside of her room towing her IV pole along side. Every once in a while she would stop, lean against the wall and made a very seriously funny but agonising face. We knew then that it was time to start the stop watch to see how long the contraction had lasted and how far apart it had been since the last one had occured. Once the pain subsided she would stand up straight and continue to walk down the hall as if nothing had happened. What did I do? I tried my best not to crack jokes during a contraction. Apparently, laughing during a contraction is not a good thing.

What was nice about it was that our families were all there. Both sets of grandparents as well as my sister. As the day progressed, and my wife lay in bed we all sat around talking. When my wife finally went into active labour her mother and I joined her in the delivery room to witness my son being born. The delivery took no more than 45 minutes and although there was a little discomfort for my wife she did say that the pain was nothing that she had been told it would be. As a matter of fact, she was still laughing at my jokes between pushes!

ONce Parker was born, they swooped him away to be cleaned and weighed and then brought him back to me so that I may hold him in my arms. I was absolutely overwhelmed with joy by the birth of our new son Parker. It was not long before we were able to bring our little man out so that everyone who had sat around with us all day could finally see why they were there.

Every time we hear of someone who is about to have a child my wife and I always look at each other. She never fails to say to me, "Remember how much fun it was the day Parker was born?" So with that, when I spoke with my sister last night on the phone, I made sure to tell her to have fun tomorrow. I am not sure if she understood what I meant by that, but at the very least I will make sure to visit her today in the hospital while she awaits the birth of her new son and every once in a while I will ask her if she is having fun.

Monday, October 16, 2006

What's Old is New Again

Yesterday was quite the busy day around here. I had decided that I needed an office at home that would allow me to get my work done easier. Currently, my office is a little room in the front of the house on a small desk that sits only my computer. As many of you have figured out I spend quite a bit of each day reading and studying different computer programming languages. There are areas in the home that are suitable to reading and others that are suitable to programming, but none that are suitable for both. With that in mind, I did some rearranging of furniture and made my office more conducive for studying. So, I sit here writing today's article in my somewhat new feeling office.

Now, I don't want to sit here and talk about me so I shall diverse and speak of my son Parker. That is the reason that you all come here. Parker has finally gone down for his nap for the morning. No matter how much we try Parker is a one nap baby. I don't remember, although I probably could look back at the articles to find out, when Parker's last afternoon nap was.

We went Saturday evening to pick up a infant toothbrush for Parker. It is the one that you place on your finger so you may rub his gums and teeth gently. The toothbrush is made by Gerber and seems to get the job done. Parker enjoys getting his teeth brushed as I assume it eases the pain of the teething. Parker now has four teeth that have finally broken the skin. The two on the bottom, that you have all seen in images. In addition, he has two on the top. Now, most of you would think the two on the top are the ones directly above the his bottom two but they are not. It is two teeth on either side that have broken through the skin. I am sure it will not be long before he will have six teeth, four on the top and two on the bottom.

Parker really enjoys having teeth. I say this because he loves to eat the thicker food with chunks of vegetables in them. It is chew chew chew with him. He gets a big kick out of it. It is much easier feeding him when he eats stage three food. The only thing is that you have to make sure he does not choke on the pieces. He enjoys coughing so if he does, you just have to do a fake cough and he will imitate with one himself.

Parker turned nine months yesterday. We are so happy to have our little baby home with us and we are absolutely delighted that he is doing as well as he is. We were told that with ADA deficient SCIDs that they can show developmental delays, in addition to the obstacles that an infant would incur due to being sick and in isolation for four months of their life. But with Parker now crawling normally as a child should at nine months of age in addition to everything else he does we know that he has not had any developmental delays at all.

Parker is going to have a new cousin in another day or so. My sister is scheduled to have her next child tomorrow and we are all extremely happy for her. I know that Parker does not get to see or play with any of his cousins, but to be honest, my new nephew will be very close in age to Parker. When my son is ready to be around other children because we have come home from Italy and he has a working immune system I am sure that the two will be best buddies. Good luck tomorrow sis, and have fun, it is a very special day for our family.

We have a few more days before Parker has his x-rays. On Friday, Parker's skeletal system will be checked to see if there are any abnormalities. The doctor's were a little worried since his weight and length percentiles were not in synch. For that reason the x-rays are being performed. In addition, I believe they will take a look at his chest to see if it has cleared up or at least looks better than it did when he was sick. Parker's infections all took place in his lungs and for that reason we want to know if his lungs are looking better. I feel bad for the little guy. The contraption that he will be placed in for the x-rays is a very constricting one.

Saturday, October 14, 2006

Some Information About Italy

I do not plan on writing too much in today's article. Yesterday was quite a long one so I will keep this one shorter.

As always we went to clinic yesterday. We had only planned on getting his ADAGEN injection in addition to having his weight taken. When we did get there we were told by the nurse who gives his injection that our staff immunologist wanted to speak with us because he had recently spoken with Dr. Aiuti. We looked at each other as we thought to ourselves that we have finally been given a date to go to Italy.

We were told that the Italian team has recently created a new batch of the virus (vector) that he uses for the gene therapy. He then proceeded to inform us that we would not be going to Italy before January and that he could not even guarantee us that we would be going in January. How did we feel? Pretty much like a truck had just run over us. That said, we were informed that the doctor in Italy has every intention for Parker to come for treatment. When? As I just said, no sooner than January. Apparently the children who have been treated to date have been less than three years old and have been on ADAGEN for approximately one year.

We of course wanted to know if we would be waiting a very long time before we were given a date for Parker. If so, then maybe we would look into one of the other centers in the world that is doing similar experiments. England, Los Angeles, Japan and Italy are all doing gene therapy for ADA deficient SCIDs. Italy has always been our number one choice as their success rate is very high and they have the most experience with the treatment. If it were to be a long time then the doctor in Italy would most likely tell us to look at a different center. He did not. For these reasons, I would be surprised if we were not going to Italy early in 2007.

How do we feel a day after being told? We feel better. We would rather know that we were not going in November or December instead of thinking about it for the next 60 days. Wondering if we would get the call. Parker will now get to spend Christmas with his family in Canada instead of in a hospital. Most likely Parker will get to have his first birthday in Canada as well. We want our little boy to get better. He has surprised everyone so far at how well he is doing. Everything that has happened since Parker's birth has happened for a reason and with that I am sure there is a good reason why Parker is not going to Italy until 2007.

Friday, October 13, 2006

Mr. Stinkerbobinker

My apologies for not writing yesterday. I kept putting it off until later in the day and then at 10pm I realised I was much too tired to write anything with any substance. I decided to get up early this morning, before we go to clinic with Parker and write an article then. Well, I will say that getting up early was not a problem for me today. Parker had both myself and his mother up at 4:30am. We heard him stirring around in his crib so we figured that if we got him a bottle, he would be full and then sleep until 7:30am. What happened instead was Parker thought it was time to play and decided that he did not want to go back to bed. So, I decided at 5:30 to take it for the team and go in his room and play with him for an hour to tire him out.

I have to say that babies, at least my baby, seem to have quite a bit of energy first thing in the morning. He is the most mobile and vocal when he first gets up. So, this morning we played chase the balls. Parker has always enjoyed playing with the little plastic balls we gave him. From a very early age he was able to pick up the balls with a couple of fingers to inspect them. Now, he enjoys taking two of them and banging them together. He also like pushing them with his hand while he is on his stomach and then chase them by either dragging himself across the room to them or performing his newest method of transportation. Now that Parker is able to get into his sitting position by himself he uses it to get from one place to another. He will sit, then get to his tummy and then sit again a few feet away. How effective is this?

Yesterday, I left Parker on his ABC mat to play with his toys as we do all the time. Parker has come accustomed to playing by himself so when we leave the room for a minute he is able to keep himself occupied and content until we return. Yesterday, when I left the room for a moment, I was surprised to not find my little boy on the mat as I entered the room. Then, in the corner of my eye I noticed a little boy leaned up against the sofa in the corner of the room. The little monkey was very pleased to be off the cushioned mat and on the hardwood floors. I don't think he will be doing that again anytime soon because as I was snapping pictures of the little guy he lost his balance and bumped his head on something a little harder than a foamy letter 'P'. Of course, I picked him up and gave him a kiss and he was just fine.

have two teeth on the bottom. We have been waiting for a while for him to get the same two teeth to come in buAs most of you can tell by the pictures of Parker he doest on the top of his mouth. Although, it does look like we can see them through his gums he just had a tooth elsewhere in his mouth break through his gums. Parker's tooth that is adjacent to one of the top two has recently come in. To be honest, I don't know what I was thinking when I stuck my finger in his mouth yesterday, but when he bit down, it hurt. A lot. Parker really enjoys using his teeth and for that reason I have decided that it is important to feed him the food with bits of carrots, potatoes and corn in them. He loves chewing and loves in more to show his dad the little bits that he has chewed the larger ones in to.

I was on the Internet a couple of days ago, and I was on the American Dental Association website. It said that as soon as infants get teeth we are to begin brushing them. I never thought of that. I will be asking the nurse today during clinic and then we will pick up Parker a baby toothbrush, I am not sure if he is going to like that very much.

I seem to have quite a bit to write about today. I have one more story to tell you about before I sign off for the day and take Parker down to Sick Kid's in Toronto. Yesterday afternoon my wife had gone out and I was left to watch Parker by myself. This is not a big deal in itself as I watch Parker all of the time. We played for about an hour when I noticed an unpleasant smell coming from my son's general direction. So I asked Mr. Stinkerbobinker if he had left a stinker for daddy to change. When I got upstairs and lifted his shirt I noticed that it had made its way up his back. So, not normally being the one who changes Mr. Stinkerbobinker I started to get a little nervous. As I pulled off his shirt, I some how transferred it to his arm. Now, I had to find a way to change him and not let him get any "poo" near his face. As I wrestled with him to get his pants off he proceeded to wipe his arm on his stomach and legs. Now I had a baby immunocomprimised baby with excrement on him wearing only a diaper and then the phone rings. Thinking it is my wife and hoping that if it is I can persuade her into coming home to help me I answered it. It was not my wife, so I quickly made my way off the phone.

By now, I figure he has to have a bath. So I make my way to the bathtub, I finally get his diaper off and I place Mr. Stinkerbobinker's bum under the warm running tap. After I felt that his bottom looked clean enough to be placed in his ducky tub I quickly held him in one arm, cleaned the tub, placed his ducky tub in the main tub and let water run into it as he sat there looking at me. We finally finished the bath and Mr. Stinkerbobinker left and I finally had my son back.

My wife came home about an hour later. As she walked through the door and picked up her son. She noticed an unpleasant smell. Mr. Stinkerbobinker had returned for another visit.

Wednesday, October 11, 2006

Mobile Monkey

I had mentioned about a week ago that Parker was on the verge of being able to get into a sitting position by himself whenever he chose to with little difficulty. Secondly, I had mentioned that it would be today that I thought we would see the little guy starting to crawl.

Parker has absolutely no problem getting into a sitting position. Today, when we put him down for his afternoon nap we heard very little in his monitor so we decided to go in and check on him. There he was, sitting in the middle of his crib with his teething blanket in his mouth as he gnawed on it.

As for crawling? Parker is almost nine months and this is generally the time in which a baby begins to crawl. Yes, some are early crawlers and some crawl a little later. We never imagined Parker as an early crawler as he is definitely not the smallest baby his age and I can't imagine it being easy to carry all that weight around while you are crawling. Recall, he outweighs 80% of the other babies his age. That said, we had noticed he was rocking back and forth for a couple weeks and was even leaping like a frog once in a while. For this reason, I thought he would be crawling around his room quite quickly. Parker did not awake this morning crawling, but he was dragging himself with his arms and using his legs to push himself in the positive direction.

We decided that with Parker's new found mobility we needed to make some changes around the house so that we could accommodate Parker's crawling and keep him safe from germs. Currently, we have slippers that are dedicated for his bedroom. This allows us to keep dirt from elsewhere in the house outside of the confines of his room. He also has a heppa filter and his room is vacuumed each day. With these precautions we feel that his room is a safe place for him to play.

Having spent four months in isolation at Sick Kid's in Toronto we wanted to make sure that he was not only confined to his room. We also have a play area for Parker on the main floor in front of the television where we have placed a foam ABC mat for him and only him to play on. To date, this has worked extremely well, but recently with him rolling from point A to point B and now with his make shift crawling and soon to be crawling we needed a better solution.

We decided that we would enclose his play area with a fence so that we could ensure that he would not crawl off to another place in the house where the environment is as controlled. After setting up the fence we purchased we were saddened to see our son confined to a caged area. What we saw in front of us is exactly what we wanted to get away from. With that, we decided that we would remove the fence and promptly return it. We brought down the ABC mat from his bedroom and doubled his play area on the main floor. We also decided that one of the reasons we keep the house so clean is because of Parker and for that reason, we will not be completely distraught if he leaves his mat to explore another area of the home. The main floor does not contain carpet, so we do not have the same worries and concerns as we do in his room.

I am sure that most of the people that populate this site have seen the story that City News did on Parker last night. I have to say that we were extremely pleased with the story and if you have not seen it yet, we suggest that you do. To see the story, click here. To any of our new readers, you will notice a collection of videos of Parker on the right side bar. The more recent ones do take up more space, so please be patient as they are definitely worth the wait!

Tuesday, October 10, 2006

Big Baby

Okay, so most of you have probably figured out that my son is quite the tough guy from reading my articles each day. However, in the past few days he has become quite the "Mama's Boy". Which, to be honest, my wife is enjoying a little bit. I am not sure if it is because he is at that stage where he misses his mommy and daddy whenever he is not with them and when he is he would like to be held by them, but he has definitely been a little more emotional lately.

It may also have to do with him getting a little less sleep lately. Last night, he must have woken up four times during the night. Three nights ago, he did the same thing. That said, he did sleep throughout he night the night before last and as a result, was in a great mood yesterday.

I left a message with CityTV this morning to see when Parker's story was going to be on television. They returned my called quite promptly and told us it should be this evening that we see it on the news. So check out CityTV tonight 6pm to see our little boy.

On Saturday, my wife and I went to a couple of events held by Pope John Paul II Catholic Secondary School. This is the school I went to back in the late eighties and early nineties. During the day a group of students who have called themselves Parker's Pals held a car wash at Millie's Pool Hall. We took Parker to the car wash and let the kids wash the car with Parker in it. I thought it would be nice to let the students know what all their work is for. It was definitely a wonderful day for a car wash and we are so thankful of the students and teachers who took the time to do it.

That evening was the alumni pub night that was being held in Parker's honour. I don't normally mention names on my blog, but I am very thankful to Michael who put so much work into the evening. My wife and I had a wonderful night. As I had mentioned that night, we don't normally get to go out and do things like that because of the number of people involved and the increased risk of getting sick. With that, we packed our personal sized bottles of hand sanitizer and had a great time. It was so nice to see so many people that I have not seen in so long. I got a chance to speak with so many of my friends from high school, which I really enjoyed. They are very caring and generous people. I know that there are several that I did not get to speak with, and I am truly sorry for that.

Sunday, October 08, 2006

What Are You Thankful For?

In Canada we celebrate Thanksgiving on the second Monday of October, making tomorrow the official Canadian Thanksgiving Day. With that, many families in Canada actually celebrate with family on the Sunday. Our family is one of those. For obvious reasons my wife and I have chosen to celebrate today with Parker in our own home with a special dinner that I will make for us.

I titled this article What Are You Thankful For? and to be honest there is so much for which I have to be thankful. I guess I shall start with the most obvious. My wife Tracy is the most important person in my life and each day I am so thankful for everything that she is and does. For if it was not for her I know that our son would not be doing as well as he has. When Parker took ill in January and she told me something was not right, I disagreed with her. It was her persistence and knowledge of her son that got him diagnosed as early as he did. For that I cannot thank her enough.

For my son Parker who wakes up each morning oblivious to everything that he has had to go through and will have to endure in the future. I could not imagine my life without him. When my son smiles at me I gain strength in a time when many would have difficulty doing so. Since having my son I am a completely different man. He has allowed me to focus on the positives in life and has allowed me to appreciate each day as it presents itself to me.

I am thankful for having such wonderful parents. If it were not for the love that they have had for me I would not be the man I am today. My parents have and continue to always be there for me and I am so appreciative of that.

When I married my wife I inherited two more very special people, her parents. They have gone out of their way countless times to help us when many people would not have. To the rest of our family who have been there for us whenever we have needed them, I say thank-you.

To all of our friends (old and new) who have done so much for us since we found out Parker had this disease, thank you.

Happy Thanksgiving!

Saturday, October 07, 2006

Perfect 10!

Now, I had written a message back on April 1st stating that Parker had finally reached 10 pounds. On Friday prior to getting his bi-weekly enzyme injection Parker finally reached the 10 kilogram mark. Parker was 10.065 kgs. It is funny how you begin to use the metric system on things like your weight, height and temperature one you have an extended stay at a hospital. Now, for those of you who are not comfortable using the metric system for weight measurements 1 kilogram is the same as 2.2 pounds. That would mean Parker is now 22 pounds and 2.2 ounces. Where would a physicist be without a little math once in a while, so here is the conversion for those of you who care:
10.065 kg x 2.2 lbs/kg
=22.143 lbs
Now to calculate the number of ounces that is equivalent to 0.143 lbs
=0.143 lbs x 16 oz/lbs
=2.2 ounces
Parker's Weight: 22 lbs 2.2 oz

That means that Parker has more than doubled his weight in the past five months. Since he was born 8 and a half month ago Parker has more than tripled his weight. That also included the first couple of months when he stopped gaining weight because he was sick and was not eating. Way to go little Parker. There are not too many children who have been diagnosed with Severe Combined Immunodeficiency that have not had difficulty gaining weight. In fact there are not too many SCIDs that we know that didn't need a feeding tube at one time or another. Parker has not.

Today, we took Parker to the car wash that Pope John Paul II Catholic School were doing to raise funds for Parker. It was a great day for a car wash, and there were so many students there helping out. The students were very pleased that Parker was able to come by to see them. Parker enjoyed looking out of the car window as they washed our car. Thank-you to everyone involved.

Tonight is the alumni pub night that Pope John Paul II alumni are throwing in Scarborough. My wife and I are both looking forward to going to see some of my old friends. We will be putting Parker down and we hope to be there just after 9pm. Parker's Nana and Granddad will be watching over the little monkey tonight.

I had also mentioned that Summit Heights has been doing a Pennies for Parker fundraiser at their school. We were so happy to hear that in the short time that they have been doing it they have already collected quite a few coins. Thank you so much, Summit Heights.

Parker has been teething the past few days. His top two teeth are causing him some pain and as a result he has been waking up in the night as a result. I know that many people think that you should let your baby settle themselves, but I am not one of those. Parker does not cry very often, and he has been through quite a bit. With his upcoming treatment in Italy he still has quite a bit of pain and sadness to endure. For that reason, I will not let my little boy cry in the night. If he wants his mommy or his daddy, we will be there for him.

I had mentioned that Parker has finally mastered the art of getting into a sitting position for his stomach in the past week. With that accomplishment I have taken it upon myself to help him master a new skill by giving his the opportunity to get into a standing position by pulling himself up. Parker has no problem standing when he has support. Parker will stand and play with his toys for a good ten minutes by himself without anyone holding him. He will stand in front of his toy box, as he uses one hand to support himself and his other to play with his toys. By sitting him in front of his toy box he will put his hands on the top of it and try and pull himself up. Currently, he needs a little help from dad to get into his standing position, but give him a few more days and he will have it figured out.

Friday, October 06, 2006

City Interview

We had our interview with CityTV yesterday. It did end up being Anne Mroczkowski conducting the interview. She is a very nice woman and extremely professional. She did not leave our home until almost three in the afternoon so it did not surprise me when she called shortly after she left to say that they would not make it downtown in time to get the story to the editors in time. She informed us that she would let us know when it was on. I guess there is a possibility it being on tonight, but if there is one thing I have figured out with this disease it is that nothing is for sure. I do promise everyone here that I will let you know when it is going to be on the air.

Back in May, when we were still in isolation at the hospital, I received a phone call from a friend I had back in high school. He now teaches at that same high school (Pope John Paul II) we went to school at and was touched by our situation. He was hoping that our high school would do some fundraising to offset some of the costs in our battle against ADA deficiency. I received a few calls from him in the past weeks to let us know that Pope John Paul II have decided that they are really excited to help out our family. This Saturday, they will be holding a carwash in Scarborough at Millie's Pool Hall where the proceeds will be donated to Parker. If you are interested in getting your car washed and help out our family, you can head down to Millie's between ten and two. The car wash will cost a minimum five dollar donation. In addition to the car wash, they will be donating the money they raise for this month's "civies day" to Parker. I know I have said it many times, but our family is so touched by all of the people that have donated their time or money to helping our son. We mentioned it yesterday in our interview, but the strength that we get from family and friends is so important in Parker's recovery.

Lastly, I had mentioned a few days a go that I said Parker would be able to get himself to a sitting position by himself on a regular basis by today. Mission accomplished. The little guy has no problems propping himself up whenever he feels like it. The thing is, he is much more interested in hanging out on his stomach then sitting on his bottom. It seems every time he sits himself up he realizes the view is much better from his tummy. As a result, he only stays sitting for a few minutes before going back to his stomach.

Thursday, October 05, 2006

City Life

My apologies for not writing last night. I was quite tired and to be honest, I recently decided to begin a healthy eating lifestyle so I am still getting used to eating smaller portions which make me a little cranky to say the least. That said, here I am at the computer with my morning coffee.

I just finished giving Parker his Septra. He gets it every Tuesday, Wednesday and Thursday morning. It is nice that I don't have to give him it again until next week. It was a little more difficult this morning than it has been in the past few weeks. We always give Parker his Septra while he watches "The Backyardigans" as he is glued to the television and he does not fight the syringe as it approaches his mouth. The first millilitre went down pretty smooth, as did the next, but when I gave him the next squirt of Septra he gagged on it. So as his face began to turn red, I frantically tried to get him to laugh or cough to clear his airway. Do you think it was me trying to get him to laugh or cough that got his air way cleared? Nope. It was him laughing at Austin on the television that did it. Not even five seconds later Parker was sitting on my knee kicking his legs in approval of his favourite moviestar. Austin the Kangaroo. For those of you who are new to the site, Septra is a medication Parker takes as a precaution to PCP pneumonia. PCP pneumonia is one of the worst forms of pneumonia.

CityTV is coming by the house today to interview us. We were under the impression that it was going to be Anne Mroczkowski doing the interview, but it seems that someone else is coming by to do the actual interview. It is to be only the woman conducting the interview and the cameraman. They asked if they could get some footage of Parker in his "Bubble" but I informed them that there really is no actual bubble. Our house being extremely clean and restricting visitors into our home acts as the so called "Bubble". That said, we did inform them that they could take footage of Parker in our home.

My wife and I decided yesterday that we are going to hire professional cleaners to come in and clean some of the more tedious things in the home once a month. Keeping the house as clean as it is takes quite a bit of work. There are quite a few blinds and windows in the house so we have asked the to clean all our blinds, windows and bathrooms so they do not have a piece of dust, on them anymore. Of course, if you were to look at those parts of our home you would think they were clean, but as I said before there is a big difference between looking clean and actually being clean.

I hear Parker talking in the other room so I better go see what all the commotion is about. It seems that every time I look away he sits up by himself and I miss it. I plan on witnessing this by tomorrow like I said I would.

Tuesday, October 03, 2006

Sit Parker Sit... Good Boy!

Although I was not there to witness it today, I was informed by Parker's Nana that he got to a sitting position all by himself. It does not surprise me one bit since we all noticed Parker doing a couple of other things today that we had yet to see.

In the past few weeks we have noticed Parker rocking back and forth on his hands and knees. Today, Parker got off of his knees and straightened his legs so that he had his bottom high in the air while his hands and feet were on the ground. It looked like an inverted 'V'. Now, I am not educated enough about the subject, but I am thinking that maybe this is a precursor to standing. I know at eight and a half months we are a long way from getting into a standing position all by himself but it was definitely nice to see.

Secondly, Parker has started to bring his knees in one at a time while in the hands and knees position. Similar to how you would do if you were crawling. You would normally bring one knee close to your hands before moving the same hand further in front of you. Not only has Parker moved his knees one at a time, he has also moved one hand in front of the other when I stand over him and bring one his knees up to his hand when he is in the crawling position.

Back when I was working with Parker on learning how to balance himself in a sitting position I had made the statement that Parker would be standing two weeks from that date. I am making a similar prediction right now. Parker will be getting into a sitting position on a regular basis by this Friday and secondly, Parker will be crawling one week from today.

I had mentioned that CityTV would be doing a story this week about Parker and an upcoming fundraiser being put on by the alumni of the high school I went to. I spoke with someone today and Anne Mroczkowski will be visiting us at our home on Thursday to do the interview. We are assuming that it will be on the Thursday, 6pm news. When I find out for sure, I will definitely let you know.

Many of you have seen Parker's baptism video in the past day and have expressed how much they enjoyed it. If you have yet to see his past three videos, you really should check them out today on the right sidebar. They will give you an excellent idea of Parker's personality. The two from September show you his fun side and his baptism will give you a glimpse of the more serious and focused Parker.

Lastly, we were informed that Parker would be having his x-ray performed on October 20th to see if he has any skeletal abnormalities. ADA deficiency can cause may other problems in addition to not having an immune system. This is the reason why it is considered one of the worst forms of Severe Combined Immunodeficiency.

Monday, October 02, 2006

Pooh Bear

I feel that I have not really written very much in the past few days. Yes, I wrote about Parker's baptism yesterday, but other than that I feel like I have had a loss for words.

The next week or so should be quite exciting for Parker as we are waiting to complete a couple of milestones. Parker is on the verge of getting into a sitting position all by himself. We saw something that I thought was him trying to get into his sitting position before we saw his therapist. She did confirm that that is exactly what it was. She then showed us how to help Parker to get into a sitting position from being on his stomach. A couple of days of that and we now see him almost there, all by himself.

Secondly, we are waiting for that day where the little monkey takes off and starts crawling. This is something that daddy and Parker work on quite a bit so that is going to be a very big day. I am not too worried about him getting sick once he starts crawling. The house is extremely clean, and we will probably confine his crawling to his room, and the family room. There is a mat on the ground in the family room, which we will probably increase in size shortly. So that he does not go all over the main floor, we will have to put some kind of infant barrier surrounding his mat.

We are also waiting to hear from the hospital in regards to when his x-ray is going to be. We were told today by one of the doctors that a requisition has been placed for the x-ray and it was requested that it be either this Friday or next to correspond with a hospital visit. Everyone is anxious to see he Parker truly does have some skeletal abnormalities. As I previously mentioned, skeletal abnormalities are a side effect of ADA deficiency.

This weekend, is the Pope John Paul II alumni Pub night. It is being used as a fundraiser for Parker. My wife and I will both be attending and are looking forward to seeing many of the people that I went to high school with. In addition, I have been informed that the school is also embracing Parker's cause. They are planning to do several events to support Parker and his battle against ADA deficiency. I believe that they are going to be promoting it this Friday at their first school mass. My wife and I are extremely happy that we have the support of so many wonderful people. It truly does make it so much easier for us. I know I have said it before, but family and friends have given us so much strength during all of this that we have been able to pass on to our son.

Lastly, I finished Parker's baptism video. I must warn you, although it is only three minutes in length it is quite a large file. I would suggest that you right click on it and select save target as... It will take a while to download even with a fast connection. Please be patient, as it gives his other videos a run for their money.

Sunday, October 01, 2006


Today we awoke knowing that we had a very exciting day ahead of us. Parker was to be baptized. Normally, that would mean going to the church where several other families were having there children baptized as well. But under the circumstances we worked it out with my Parish to have Parker baptized in my parent's home.

We had planned do have our immediate family, our best friends, my grandparents and Parker's God parents in attendance today, but unfortunately it being flu season several of them had taken ill and for that reason were unable to attend. That said, it was still a wonderful day and the event was video taped so that everyone may witness our son being baptized, whether they were able to attend today's service or not. If you check out the recent videos in the next day or so you she be able to download Parker's baptism.

My mother put together a wonderful spread and I made a cake for the occasion. Not only did we all enjoy watching Parker partake in this wonderful ritual, we were all very full by the end of it as well. Thanks Mom and Dad and everyone who was able to attend for a very memorable day. It was so nice to spend some time with those we love as well as having everyone enjoy our little guy as much as we do! A special thank-you to my Nonna for the beautiful cross and bracelet that she gave Parker. It is very special as it was actually blessed in Italy. Lastly, thank-you so much to Kyle and Josephine for being Parker's Godparents. The bracelet you bought for him is beautiful and will be close to him always.