What a Strong Big Boy!

I know I took a day off from writing articles, but I was quite busy yesterday. I decided to do some work in the backyard. I figured doing something by yourself is much cheaper than getting someone to do it for you. Free is good.

I have to say that my little man has really been developing very well. He absolutely loves his "ABC Play Area" in his room. He has no problem sitting there or lying on his tummy for an hour as he plays with his toys. He loves playing with the balls and his long fingers have always made it easy for him to pick them up and bring them to his mouth. He continues to try and reach for objects that are outside of his grasp. He has found a way to drag himself forward small distances to get his toys. The other day we played a game where I would do a push up and would then ask the little guy to do the same. You know what he did? He would bring his arms closer to him body and lift his head, chest and stomach completely off the ground. I am telling you, this boy is going to be crawling before nine months. That gives him a month and a half to figure it out.

Last night, when my wife was out and I was in charge of the little monkey I put him in his Jolly Jumper. Not only did he jump incredibly high, he learned a new trick. He uses his feet to spin himself around in circles. One, two, three, four, five, times he would go around. Then, he would stop suddenly and run in place for a few moments. His little feet would go a mile a minute as he stood there in his Jumper. Daddy told Parker, "Stop!". He had me thinking he was going to get dizzy, but he didn't.

Then when I did take him to bed, and he decided it was not time as he had not expended all of his energy yet, I took him to my bed where he rolled around all over it. I was very pleased with every thing I had seem him accomplish yesterday, but I was definitely very pleased to see my wife come home so she could get my son to bed.

Parker, strong? An understatement.

Numbers In and Up!

We made our regular trip to Sick Kid's this morning so that Parker may receive his PEG-ADA injection. We normally go a little earlier so that Parker may give some blood so that a CBC (complete blood count) can be done on him, but that was not going to be the case today. We were told last week that he was not going to have to give blood every week, and that every other week would suffice. This was because he seemed to be doing so well, and the weekly blood work always seemed to be yielding the same results.

Last week, Parker gave enough blood so that another T and B-cell marker could test could be done using flow cytometry. The last time that this test was performed was on June 6th and informed us that his thymus gland was still not functioning appropriately yet. The marker test gives us an absolute count of the different lymphocytes Parker has. Recall that there are three different types of T-cells that are matured in the thymus gland. For the first time ever, we finally had some evidence that Parker has significant numbers of these types of cells. On June 6th Parker had 121 cells /uL of CD3+/CD4+ T-cells, today the test informed us that he now has 592 cells/uL. On June 6th, the test revealed that Parker had 13 cells/uL of CD3+/CD8+ T-cells
, today the test revealed he had 232 cells/uL. On average, his mature T-cells have increased from 168 cells/uL to 903 cells/uL.

To say that my wife and I were happy about the results is definately an understatement. Now, these numbers are still below what is considered normal for a child his age without an ADA deficiency but they are very good for a child with ADA deficiency.

Parker is currently receiving ADA enzyme replacement therapy to replace the missing enzyme that his body is incapable of producing. As a result, the enzyme has mopped up the toxins in his body that is causing his lymphocytes to be killed off. I had mentioned in numerous articles dating back to the time we had to decide on a treatment for Parker in April that long term enzyme replacement therapy is not a successful long term treatment for ADA Deficient Severe Combined Immunodeficiency and for that reason we disregarded it as his treatment. That said, he must remain on it for six months to take part in the gene therapy trial in Milan, Italy. The fact that he is capable of producing the different forms of T-cells lets me know that his thymus is capable of working. This is important because his thymus will need to do the same thing when it comes to gene therapy; it will have to mature T-cells.

Parker currently has an absolute count of 468 cells /uL of his natural killer(CD56+) cells and 1117 cells/uL for his B-cells (CD20+). His high number of B-cells means that there will not be any more IgG troubles for a long while.

A Look Back

Before I started this web log I used email to let my family and friends know about Parker's illness in Centenary and Sick Kid's. I decided to go back into my email to find the messages I had written to friends and family about Parker. Below are the messages I wrote to these people. It chronicles the time leading up to the day Parker entered his reverse isolation room on 8B.

February 11th - Message to my Friend Michael
Hey Mike,

Sorry I have not written in a while.

Parker has been in the hospital for the last 10 days. He has pneumonia. Not exactly what I thought it was going to be like. He is definitely a trooper though. A very good patient.

Hope things are going well with you,

Kevin

February 12th - Message to my Friend Michael
Well, it started with Brochiolitis and I guess with his immune system down he got pneumonia.

He is going to be fine. We just did not think that in the first month we would have spent more time at the hospital with him than at home.

He is eating and gaining weight. After talking with the doctor, we think it is a viral infection that caused both. The only real symptom he has of both is his breathing is in the mid to high 70s/ per minute when it should be in the 40s. He has to work harder to get his oxygen (more breaths per minute).

Tracy and I pretty much alternate nights at the hospital. Last night was my night.

Honestly, he has an amazing bedside manner. He is being such a trooper and not complaining at all. If you saw him, you would never know he was sick. We just want him to get better.

Kevin

February 21st - Message to my Friend Michael
Hi Mike,

The baby is quite sick. We are Sick kids. They are doing a lot of tests right now. The baby is not fighting the pneumonia and his immune system is not working correctly. There are a team of doctors trying their best to find out what is wrong. It is quite a stressful time right now. They are looking for his thymus gland. They don't see it in any of his x-rays. His lymphatic cells are EXTREMELY LOW and they don't know why.

I have to get back to the room. They have email at the hospital.

Kevin

February 24th - Message to my Friend Michael
Hey, I though I had updated you on this one. But looking back, I did not. They found his thymus gland. It was very small but it was there. His lymphocytes were still low a couple of days ago but they were increasing. They are now looking to see if he has the right proportion of the different kinds of lymphotcyes as well as if they can fight infections properly.

Kevin

February 24th - Message to my Friend Michael
Parker is looking better. We are waiting for some tests to come back. They may come back today, they may come back Monday.

He is getting stronger. The nurses always say how strong he is for his age. It will be nice when we can go home. I am pretty sure he will be a very spoiled little boy for a while.

Say hello to your mother for me. Let her know that we are all doing well.

February 28th - Message to my Friend Michael
Hi Mike,

We have not found anything out yet. Tomorrow we should get some more results about his immune system. He may be going in for a CT scan as well to look for a lung disease. I wish he would just get better.

Kevin

March 3rd - Message to my Friends and Family
Hey Everyone,

I am sending out this email to let people know the latest about little Parker.

Parker seems to be very difficult for them here at Sick Kids. They are having a very difficult time trying to diagnose him with something.

He did have a CT Scan yesterday: They thought they saw something called tracheoesopegeal fiscula which is a connection between his air pipe and food pipe. So they did a Upper GI to see if they could see food going into his lungs, but that seemed to come back negative.

The rest of his lungs look abnormal and the Respitory Team are to review the rest of the CT Scan to see if they can come up with something.

His lymphocytes are extremely low. They consist of cells called T and B lymphocytes. The lymphocytes are made in the Bone marrow and then either go to the Thymus to become T-cells or do not to become B-Cells. Since both are low they are looking at some different Primary Immunodeficiencies as well. He is currently being tested for something called ADA which cause both T and B cells to be low and are caused by an enzyme deficiency. It is cured with a bone marrow transplant. But again, this is just one thing it could be. However, the only way for him to have that is for Tracy and I to both be carriers of the gene since it is autosome recessive.

We are all just hoping that it is just some virus that causes the lymphocytes to lower while causing some abnormalities in the lung and he will eventually heal by himself. They cannot test for every virus because there are just so many. They did however test him for the main ones. What I do not understand is that virus are fought by T-cells and would cause T-cells to elevate in numbers so they can fight and he does not have elevated T-Cells.

All the different teams are meeting today at 2pm to discuss Parker. They will then see us after that. So it is a waiting game at the moment.

The thing is ... If you look at Parker he looks fine. He is very alert. He eats, and gains weight (slowly). This is what boggles their minds as well.


The important things in life become so much clearer once you have a child. Parker and I made a movie yesterday with his stuffed animals. I think they wanted to cheer him up.

Kevin

March 3rd - Message to Friends and Family
Okay,

We met with the team at 2:30pm and we did get some more information. Well, information in the sense of what direction they are moving.

Parker is still a special case in the sense that they do not know what the diagnosis is. There is definitely something incorrect about his lungs, what it is, they are still unsure. It is however, one of two things, some infectious disease (an infection) or some underlying lung disease.

The next major step is to know if it is an infection or not. If it is, then there is probably an immunodeficiency. The number one on their list although he does not appear to look like a child that has it is ADA. So we are still waiting for the test to let us know if he has that. But they would rather not wait to hear if he has that particular immunodeficiency to know if there is an infection.

So, the way to know if there is an infection is to first get the infectious disease team on Parker team. They will be meeting with us in the next 24 hours to see if they feel there is more than a 50% chance of an infectious disease.

If they believe it is most likely one then they will perform what is called Brochoscopy or Brochoalveolar lavage. This procedure will require Parker to be placed under a general ansthea. They will then enter in air ways, into his lungs to grab some cells. This will let them look for some infectious disease. We are of course anxious of sedating Parker in any way but do understand that it may have to be done if he is going to get better.

Now, if they think it is a lung disease not caused by infection, then they will have to do a lung biopsy. Which would require surgery to open his chest and lung to obtain tissue. You can imagine the stress we are experiencing as we imagine our new born having to have surgery, as there are complications involved in having this done. Note that a small child like Parker may not even yield enough tissue in a biopsy.

Tracy, Parker and I appreciate all of your prayers.


March 7th - Message to Friends and Family
Hello,

Today was quite a difficult day for us as we found out some information that we were not expecting. I had mentioned in an earlier email that Parker was being tested for an immunodeficency called ADA. The test came back this morning positive. So it appears that Parker does have this specific immunodeficency. ADA is an enzyme that everyone has and it works with the T and B-cells (a subset of white blood cells) whose main purpose is to fight infections. Having an ADA deficiency means that Parker is unable to fight even the simplest of things like the common cold ("Bubble Boy Disease").

After speaking with the Immune Team at Sick Kids, the next step is to retest Parker, as well as have Tracy and I tested to see if we carry they recessive gene. Although it is highly unlikely that a false positive would appear, it is protocol to redo the test to be absolutely sure. Once the test confirms that Parker has an ADA deficiency, he will be moved to a wing in the Hospital where all of the kids are awaiting or have had a Bone Marrow Transplant. That brings us to the treatment of ADA deficiency. Yes, there is one.

In 85% of the cases in which a child has ADA the treatment is a Bone Marrow Transplant. They will first check Tracy and I to see if we are likely matches, but more often then not we will have to resort to the Bone Marrow Transplant Database. If and when they do find a match (3-4 months usually from the database) Parker will undergo the Transplant. The average time in the hospital would be 10 months for recovery. If Tracy and I are a match then you are looking at about 7 months for recovery in the hospital. The difficult thing here is that while he is in this wing of the Hospital Tracy and I will no longer be able to stay with Parker through the night. Something that Tracy and I are both having difficulties coming to grips with. It is very important that the likelihood of a match is high since we do not want Parker to reject the transplant or the host marrow to attack Parker's organs.

If that were not enough, we met with the Surgical Team this evening to talk about Parker's biopsy. Because Parker has ADA he cannot fight infections and that is what is most likely the cause of his rapid breathing and constant need of oxygen. Since the Infectious Disease Team has not been able to pinpoint the infection that Parker has, a Biopsy will be done to take some tissue from his lung and test it for many different infections (viruses). The type of biopsy being planned is called a Tracheoscopy Biopsy. With this biopsy, they make two small incisions in his side. One for a camera and one for a device that will remove the tissue. Once they have the tissue, pathology can use it to run tests (24 hours - 2 weeks depending on the tests) to obtain the infection causing the problem. Once they know what it is, they can fight it for him. This will most likely occur by Friday of this week.

After he has the Biopsy he will spend a day or two in the Intensive Care Unit where he will be monitored. This is typical of infants that have oxygen dependencies. From there, he will be moved to the Bone Marrow Transplant Wing of the Hospital where he will reside until he goes home after he heals from the transplant.

Tracy and I do appreciate everyone's prayers and thoughts. And although Parker has not directly come out and said it, he does to.

Kevin

March 8th - Message to Friends and Family
Hello,

It was confirmed today that Parker has ADA. He will be going for his surgery tomorrow for the Biopsy and the BAL to find out what infections he is fighting. Once they know, they will fight them for him. Parker will begin isolation on the 8th floor (B) where there are two types of patients. Cancer patients and immunodeficient patients. The immunodeficient patients are kept in COMPLETE isolation until their treatment has completed.

It is definitely going to be a long and tough ride but we know that we will make it.

For those of you that want to get more information about ADA check out this site:
http://www.marrow.org/PATIENT/immune_sys_disorders.html

Information about bone marrow transplants are located here:
http://www.marrow.org/PATIENT/patient_faqs.html#findmatching

March 9th - Message to my Friend Adriana
Thank you for the kind words. It is so crazy and I honestly don't know if it has really hit me yet what has happened. I have realized in the last couple weeks what great friends Tracy and I have. I know that things are going to be tough the next while but I know this kid is a fighter like his old man.

Parker had his surgery today and it went very well. Although it does not change his ADA it was a happy thing to hear that surgery went well. I did see him in the recovery room afterwards and when I told him I was there and called him my little monkey, he opened his eyes to look at me. You can't imagine the joy that brought me.

Maybe over the March Break you can visit me at the hospital. Maybe we can go for lunch so that I have a shoulder to cry on if need be. Although I am strong most of the time, there are times in which I am unable to hold it in. Tracy is so good for letting me do that when need be.

I will give you my number at the hospital once we move in to 8B in the next couple of days.

Kevin

March 10th - Message to my friend Naila
Surgery went well. They did the Biopsy, BAL and Broncoscopy. Today, his blood pressure was low, breathing and heart rate high, and he looks quite swollen. He has so many things hooked up to him, so it is hard to handle. He is awake, but he is obviously not himself today.

I know he will get through this part. He is on three different antibiotics, as well as an IV for a specific kind of immunoglobulins (gamma). They are, as I write doing a blood transfusion on Parker.

I am sooooo tired. And full now as we went to eat at the Saffron Tree for a lunch buffet.

As soon as I get access to my computer I will send you a bunch of pictures.

We are supposed to be going to 8B on Monday, as long as the room is still available.

I will call you later.

Two Trips to the Hospital in One Day

On Friday we got a little more hospital than we had hoped for. Parker had has regular trip in the morning to get his ADAGEN injection. We hoped to also get his T and B cell marker test results but they will not be ready until Tuesday. In addition, we spent three hours at Rouge Valley Health Centre in Ajax, not for Parker, but for his daddy.

I thought it would be a good idea to make a nice Italian dish for dinner as I have been working on my Italian as of late. I figured linguine ai frutti di mari would hit the spot. But as I cut tomatoes with a chef's knife instead of a seraded one and I watched an interesting episode of Oprah, I cut a little more than a tomato. Silly daddy, cut the tip of his left baby finger off. Yes, off. It was not a lot, but enough that I had to go to the hospital to get a pressure bandage put on it.

Poor little monkey had just gotten in the tub, when mommy heard daddy say, I have to go to the hospital. The poor little guy was so upset that he had to come out of the water so quickly. He was enjoying his time with his new rubber ducky. Splashing and kicking in the water are two of his most favourite things.

Enough about me. You can really see Parker's tooth coming in now. He has been very good about it not crying very much about it at all. Parker has been his regular little cheery self always wanting to play, talk and laugh.

Parker has always gotten a lot of stimulation. Even at Sick Kid's his mother or I were always doing something with him. I started doing 'tummy time' with him at six weeks of age, as I tried to get him to lift his head while he was on oxygen and strapped to an IV. Now, at home there is always someone playing with him, and if not he is playing contently by himself in his Exersaucer or on his floor in his room. I know that it has definitely caused him to be very strong as well as do very well developmentally, but my wife has been wondering if all the attention will have any negative side effects. Anyone who knows my wife will attest that she does worry about quite a bit. That said, it was her worrying that got Parker diagnosed so early. If it were not for her and was left up to me seven months ago, who knows what situation we would have been in now. So I am very happy that she is this way. How do I feel about Parker's attention? It is my opinion that all the attention that Parker has gotten has only done good and that there is definitely nothing to worry about. We may give him a lot of attention and stimulation, but we also make sure that he knows we are the boss. Parker does not do only what he wants to do, but what mommy and daddy think is best whether he likes it or not. When that is all over, Parker does get smothered with love to know what a good boy he was.

For those of you who are interested in how much Parker currently weighs, he is five grams short of nine kilograms. In pounds and ounces, 19 lbs, 12.6 ounces. What a big boy.

A Day With Nana and Grand-dad

My wife and I decided to take a day trip to Buffalo and Niagara Falls, NY to do a little mall walking and site seeing yesterday. I am not one who likes spending a day away from home, but my wife had been asking me for a few days to get away, so I figured I should honour her request. I like going to the Target in Niagara Falls, as they usually have much better deals on diapers and other baby toys. I couldn't leave without picking up a toy for the little guy, so I got him a new rubber duckie for his duckie bath tub. This one does not have a hole in the bottom for water to get in. I feel much more comfortable with Parker playing with toys that do not accumulate water in them since that could be a breeding ground for germs.

Since we are unable to take our little boy with us, he got to spend the day with his Nana and his Grand-dad. Parker really enjoys his time with them, and they know all of the ins and outs about Parker so we feel very comfortable leaving him with them.

To be honest, when my wife is not around and Nana is, I always make sure to comment about how stinky Parker's bum is so that she will step in to change the little monkey. That said, I did change one this morning when no one was around, and in record time I might add.

I have to say that one of Parker's most favourite pastimes is to go exploring the house while on Grand-dad's shoulder. If the little monkey is crying or upset, it is usually a ride with Grand-dad that cheers him up.

Although we do trust Parker with my wife's Parents that did not mean we didn't call numerous times to check up on the little monkey. To our relief, Parker was always doing very well and enjoying every minute with his Nana and Grand-dad he even took two good naps during the day for them.

When we did return home, the little monkey was very pleased to see us. Although it was nice to have a relaxing day to ourselves, seeing our little boy smile uncontrollably at us when we returned home was definately the hi-lite of our day. Thank you Nana and Grand-dad for letting us have some much needed time to ourselves to relax and enjoy our relationship.

Numbers Up!

We made our way to Sick Kid's today as we normally do on Tuesday so Parker may give blood and receive his ADAGEN injection. It has been almost four months of receiving the enzyme injections so we figured it should begin starting to take effect shortly. I had mentioned in an earlier post a procedure called flow cytometry to check for the different T-cells that he is producing as well as his B-cells. While doing his regular blood work, Parker gave some blood so that another flow cytometry could be done. Although we have yet to receive the results for this test, his regular CBC did come back and we were very pleased. Parker's numbers were the highest they have been since first going on the ADAGEN. His white blood count was 6.5, and his lymphocytes were 2.64. Of course, after receiving an IV for IgG, that level was up as well to 8.1. I don't want to be too excited until the T and B cell marker test results are in, but this is definately encouraging.

A couple of months a go I had written an article about Parker's weight gain and had included a graph from Excel illustrating how he had gained his weight. I have continued to track his weight and have noticed that in the past few weeks he has begun to increase in weight at a slower rate. This is normal according to the charts that I have looked at. I am very pleased at how perfectly he conforms to the graph each week that I have been using. You will notice that there are two portions to the graph with two separate slopes. The steeper slope depicts his rapid weight gain while he tried to make up the weight that he lost when he was sick. You will also notice an equation beside each line. This equation is the equation for that line and the number we are concerned with is the value before the x. The steeper the line, the greater the value will be. This numbers indicates the average daily weight change in grams. Parker has been gaining weight at an average of 22 grams per day.


Amongst all of the good news I do have some bad to mention. Since receiving his IV a week a go, we have noticed that Parker appears to be having what seems to be nightmares. Each night we go into the little monkey's room because we here him crying. The only thing is, is that he is crying in his sleep as he dodges his arms and moves his head. The episode does not last very long and I am noticing that they are occurring a little less frequently but I must say that I do feel quite bad for the little guy. Let's hope that these episodes stop soon.

Play Time

Parker and I have decided on a new kind of game. Parker goes on his tummy at one end of his new play area and I lie on the carpet at the other end. See Parker has always liked holding the little round balls in his hands. If there is something he inherited other than the ADA and blue eyes from his mother it is his long fingers. So I at one end roll a ball lightly to my friend at the other. He smiles in anticipation as the ball creeps closer and closer to him. Sometimes I roll them to the right of him, sometimes to the left, and sometime I even roll it so it is just short of his reach. Regardless, each time the little monkey swipes at the ball ricocheting it to the side or if he is lucky he pulls it in to his body where he can bring it to his mouth with two hands. Last night, Parker had a difficult time going to bed. It was almost 10pm when my little friend finally fell asleep. At twenty after nine I called downstairs to let my wife know that Parker had no intention in sleeping. Instead, I introduced my wife to the game that we had been playing earlier that day. Twenty minutes later, after a very intense game of "roll the ball", Parker began to rub his eyes and we knew it was time for bed. It is just after ten this morning and I have already played "roll the ball" with Parker. There are some many reasons why this game is so good. The little guy has so much space on his mat that he tries to spin around, crawl and roll over. I think this will definately be the game that will help Parker finally get up off his belly and on to all fours.

It has been sometime since we have monitored Parkers food consumption. We used to always record his feeds in an Excel spreadsheet but discontinued that a few weeks a go. I figured it would be a good idea to record his feeds for a few consecutive days to see how he is doing. Parker is definately gaining weight at a record pace and the last thing I want is for him to get too chubby in comparison to his length. We will probably be doing a measurement of his length next Friday so we can check.

I am not sure if anyone caught CHIN TV yesterday to see how they reported Parker's Journey. I taped it and I must say that it was absolutely amazing. I will definately be trying to move it to the website along side the other interview I did with them. Give me time and you will have it. Again, thank you so much to CHIN and everyone who helped Parker's Journey raise over $25,000.

Some of you have already checked out the new poll. If you haven't vote today for the person you think that Parker most looks like.

Parker's Journey

Last night was one of the most memorable evenings I have ever had. Parker's Journey was a complete success and I don't think that it could have been any better. My wife and I had the most wonderful time and we are so appreciative of everyone who helped out and everyone who shared the evening with us.

I know that I mentioned it last night in my speech but I want to begin this article by thanking some very special people. First, we would like to say thank you to Sam and Andrea, their expertise and guidance throughout the organisation of the event was invaluable. We are very fortunate to have had the two of you take part in Parker's Journey. You made an excellent team as Master of Ceremonies. Thank you to the Mayor of Vaughan, Michael Di Biase for finding time in your extremely busy schedule to be with us in this celebration of our son'’s life. You were extremely well spoken and your words touched so many of us. I mentioned a thank you to my mother last night, but I really want to say it again. Tracy and I are extremely appreciative of all the time you have put into this event. The time and effort that you put aside for this means so much to us. It truly is times like these that reinforce the importance of family. Most of all, we would like to thank Mara and Mauro Arturi. From the moment we heard from my mother about this event that you were planning for our son we were absolutely flabbergasted. The two of you have put so some much time and effort into Parker's Journey that we are forever grateful. Thank you, from the bottom of our hearts.

In addition I want to thank some other people who made last night a very special one. Thank you to Carlo Coppola who played two incredibly beautiful songs during dinner. Carlo was extremely talented and his music touched everyone. Thank you to Veriation Music who donated their time last night so we all could have a wonderful time. You found a way to keep my seven month pregnant sister dancing until the wee hours of the night! Thank you to D&D Floral Design for the beautiful floral centre pieces. To Dolce Magazine and CHIN TV for taking last night to cover the event. We look forward to seeing the memories you captured in your upcoming magazine and Sunday television show. Thank you to the people at the La Primevera Ballroom. It was such a beautiful evening, the food was absolutely incredible. I also want to thank all of our sponsors last night for their generous donations. The raffle and silent auction were definately a success.

I tried to speak with as many of the people who came to Parker's Journey last night and I cannot thank everyone enough for everything you have done for our family and our son. It was so nice to hear from many of the people who read the blog on a regular basis. I was so touched to know that Parker has become so special to so many different people. This is the reason that I say that I feel terrible when I do not write an article on a given day. Yes, it is my outlet for sharing what I and my family are going through, but even more it is my way of telling the world how much I love and how special my little boy is.

I know that many of you would like to know the final amount that the evening raised and we are very pleased to tell you that Parker's Journey raised over $25, 000. Our family cannot thank everyone enough for last night. I know that the next big celebration that we have will be to celebrate Parker and his successful journey back from Italy. Please continue to regularly visit Parker's website as I tell the story of Parker's Journey.

Parker's Journey Tonight

Tonight is the big night. All of the hard work that everyone put into Parker's Journey are going to see the benefit of the their generosity and labour. We are really looking forward to tonight. There have been so many people that populate this web site and we are really excited to meet many of you. If you are unsure of how to get there take a look at the link to the La Primevera where you can locate a map to the event. The Antipasto bar will be open from 6 - 7:15p, the Martini Bar opens at 6:30p and Dinner will begin at 7:30p.

Parker had a trip to Sick Kid's this morning for his ADAGEN injection and for his immunology clinic. For those of you who are unsure of what immunology clinic is, that is when he sees one of the staff immunologist and they inspect him and answer any questions we have. There are two immunologists on staff in addition to the doctor in charge of immunology at Sick Kid's.

Clinic went extremely well. Parker weighed in at 8.705 kg, for those of you who speak pounds and ounces that is 19 lbs and 2.4 ounces. Yes, Parker broke the 19 pound barrier. I still remember writing about Parker reaching 10 pounds and he will double that in a few weeks. Parker is currently at the 60th percentile for his weight. What a strong and thriving little boy.

I created a new play area for Parker in his room. We used to have a small blanket that was given to us as a gift that we would use to cover the carpet, but now I have washable rubber tiles the letters of the alphabet. We set it up yesterday and the little guy absolutely loves it.

Another new addition to Parker's life is his new ducky bathtub that his Nana bought him. He had his first bath in it last night and he was very pleased with his new tub. You can even squeeze the beak and it quacks.

We look forward to seeing everyone tonight. It is going to be a wonderful event to honour our son.

Parker is my Good Luck Charm

I woke up this morning at 6:45am and walked into Parker's room to find him lying perpendicular to his crib with his two legs dangling out, as he played with the music box that is attached to his crib. As I walked closer to him he turned his head and looked at me. Do you know what he did? He smiled at his dad. How can anyone have a bad day when you start your day like that. I smiled back at my little friend, freed his legs from the crib and laid him lengthwise. I rubbed his hair told him I loved him and that he should go back to sleep so mommy could get some rest. Daddy was going to try to get nine holes of golf in this morning.

I can't say I won, although it was definitely close, but I can say that what I used to consider a very stressful sport was not what I had remembered. My brother and I both have children now and our priorities have changed greatly since the last time we both played. My game contained three bad shots, my first one, and two into the water that ended up costing me the game. With the memory of my smiling little boy still fresh in my mind it was easy to realize what is important in life and to enjoy the morning for what it was, a couple hours of golf with a family who loves you.

I usually write from home but I came down to the La Primevera Ballroom where Parker's Journey is taking place to test the Internet connection. I figured I could write my article for today while my wife fed the little monkey. Yes, we decided to bring Parker with us, bubble and all to test the connection. He is sitting in front of me pulling at the straps of his stroller as I finish the article. I am really looking forward to seeing everyone this Friday at the benefit dinner. The martini bar opens at 6:30 and those who love antipasto the antipasto bar is open from 6p - 7:15p, while the dinner begins at 7:30p. I will definately be skipping lunch.

I purchased a couple domain names yesterday for when I move Parker's site off of blogger. It cost $20 and I figured it would be easier for people to remember. Give it a couple of months and www.scidada.com and www.parkersbattlewithada.com will be the links for Parker's website. At the moment it only says coming soon. I am really excited about being able to move Parker's site. For those of you who are curious we have had over 50,000 hits since we opened the site in March.

Lastly, the winning video from last week's poll is ... Parker Laughing at his monitor.

Mama Told Me There Would Be Days Like These

I would like to say that today went without a hitch but I would be lying. It was one of the toughest days I have had to go through in quite some time. We had our trip to Sick Kid's in Toronto today so that Parker could give some blood, get his ADAGEN injection, but more importantly receive his IgG transfusion. Those of you that remember from a few weeks ago when Parker attempted to get his IVIG we did not have any luck. The result was that we went home without getting any gammaglobulins. Today we did not have that luxury, as his IgG level was at a dangerously low level.

Mommy, daddy and Granddad all went with Parker at 9am this morning to 4C where they normally give children transfusions who are out patients. We requested the neonatal transport team since they have had success with Parker when it comes to giving him an IV. They are extremely knowledgeable and very friendly. The team arrived and were as nice and professional as the last time we had dealt with them. I told my wife that I would stay with the team as they tried to insert the IV. It was my job to hold Parker down as he tried to push everyone away. I tried to distract him as I stared into his eyes and talked to him. But Parker just cried. The tears were unbearable. I felt completely terrible. The team made three attempts at inserting an IV into Parker, two in his hand and one in his head, but the IV blew on all three attempts. This was no fault of theirs, Parker has difficult veins. At this moment they decided not to attempt any more, as they felt a new team may have a better chance at obtaining a vein.

After another 90 minutes had passed and we had calmed Parker to a point where he was sleeping in my arms, a member of the IV team was going to attempt to place the IV. I took Parker to an IV room and the moment I lay him down on the bed he must have known what was to come. My son looked me in the eye and began to cry. It took only a moment for the tears that had accumulated in his eyes to fall rapidly down his face. First they tried his head, but again to no fault of theirs, it failed. Then they attempted his foot, it blew. Parker continued to look at me in disarray, "How could you let them do this to me?", it seemed he way saying. I felt terrible, but I knew he needed the IgG to help combat infection. After the IV in his foot failed I picked up my son and held him. I wanted to take all his pain away. But did not know how I could possibly do that for him. I just repeatedly bounced him in my arms and told his I loved him. When I placed him on the table once again, he had not stopped crying from the previous attempt. The goal was to try in a vein in his other foot. I held my son very still, by now, he still cried but he didn't have the energy anymore to push and kick as they attempted the IV. This time, with my son exhausted from the previous attempts, the nurse successfully inserted the IV into Parker's foot. My son could finally be comforted by his father as he no longer needed to worry that anyone would attempt to hurt him anymore.

I know it must have been extremely stressful for the nurse attempting the IV with my son as upset as he was and his parents looking over her, hoping that she is finally successful. Everyone who attempted an IV on Parker were extremely knowledgeable and professional. They are among the best in the world at what they do and we thank them very much.

Parker is in bed now sleeping. I hope that he sleeps well and does not have much remembrance of the events that occurred today.

IVIG Tomorrow

Tomorrow morning we will be heading down to Sick Kid's so that Parker can get his infusion of gammaglobulins (IgG). These are some of the cells that the B-cells produce to help fight infection. It is Parker's primary line of defence at the moment. He does have some natural killer cells, as well as a working innate immune system, but his adaptive immune system is still not working well enough to fight off most infections. For the past three months his IgG level has been steadily declining. As a result, they will top him up tomorrow so that he has more to help him in case he does have to fight off some invaders.

It was almost a month ago that they tried to give him an infusion of IgG. The result, a little baby called Parker who's veins were poked without successfully being able to house an IV. It was 45 minutes of trying but we decided that it was not fair to Parker, us, or the nurses who were attempting to place the IV. Tomorrow, we hope that they will have more success.

Tonight, my wife and I went to Brampton where friends were holding a meeting for an event called Riding for Parker in which they will be riding 100 km by bike. The proceeds that are accumulated through the event will be donated to Parker's cause. We are extremely touched by the generosity of the people taking part in the event. The ride will take place in October, and as the date for the event comes closer I will make sure to write more about it.

Parker and I spent quite a bit of time together today working on his exercises. It is so much easier now that he can sit unassisted. It allows me to have him work on new things like how to get into a sitting position from lying down, or how to get on to his tummy from a sitting position. But most of all, we enjoy placing different toys around the little guys while he is sitting so that he may attempt to play with them.

I know that a lot of you may think that I work the little guy quite hard, and as soon as I display the video of him crawling over his "Jolly Jumper" pillow, I am sure there will be more of you, but I have a reason. There are going to be set backs when we go to Italy. There are going to be times where he is not going to want to eat, there will be times where he will be in pain, or on drugs. He may lose weight some weight from not eating. For these reasons, I feel it is important to push the little guy to learn as much as he can as soon as he can so that if he does have a lapse, he will still be at the same stage as most children his own age.

A new poll will be starting very shortly in Parker's Weekly Poll. If you have not voted for your favourite video you should do that soon. The race is very close. Lastly, Parker's Journey is at the end of the week and if you still plan on attending you should get your tickets soon. Information about the event can be obtained at the top of the right sidebar.

Its Been a While

It has been a few days since I last wrote, and I apologize for that. I truly do try and write each day, but I must admit that things have been quite busy around here lately and for that reason I have neglected the blog.

Parker has been doing extremely well the past few days. I am really starting to think he can differentiate between the different members of our family. I know it will be a little while before the little guy blurts out "Dada" or "mama" but he is starting to put his arms out when we show him ours. It is nice seeing him wanting to be picked up.

Parker had been watching quite a bit of Backyardigans the past while. Not hours each day, but about 40 minutes (two episodes) each day. He really enjoys the songs and the little characters in it and actually has a favourite episode. Parker's favourite character is definitely Austin. During "Racing Day", when Austin comes on the screen and sings and dances, Parker smiles one of the biggest smiles you have ever seen. I bring this up because we have decided to change what the little monkey has been watching to Baby Einstein. We figure it is a good idea to have him see the different animals on a farm and the sounds that they make. For that reason, he watches Baby Einstein, MacDonald's Farm. It has only been a couple of days, but he does seem to enjoy it.

We are in the midst of adding a third feeding for Parker. He has recently started having some of the stage two meals from Beechnut and has shown that he enjoys them. We have also decided that during dinner Parker will sit with us at the dinner table in his high chair. This has been going on for the past three days with great success. Parker has a wonderful high chair he got from his Aunt Katie and Uncle Michael and it has toys that attach to the chair so that he cannot throw his toys on the ground. That is great for him and us, as the first night at the table, when we were letting him use his other toys at the table he kept throwing them on the floor and we would have to keep sanitizing them. This way, he can throw them all he wants, but they never reach the floor!

I wanted to mention a fundraiser that a friend is doing for us. She has been selling raffle tickets for a Tim Hortons coffee maker that was donated. The raffle is being held on October 1st. She has been very generous with her time and we are very appreciative of that. Thank you, Rita.

On that note, so many people have been so generous and have really supported Parker and his family's battle with this disease. We are so happy to know that we live in a part of the world where there are so many people who go out of their way to do wonderful and caring things for others.

Just Another Day

My apologies for not writing yesterday, I spent most of the day working with the little monkey on his exercises and by the end of the day I was quite tired.

Parker has gotten extremely good at sitting unassisted. I let him watch an episode of the Backyardigans as he sat there by himself in front of the television. He also sat in his room for 20 minutes as he played with his toys and stared at his gymni. I am starting to think that he enjoys sitting as much as being on his tummy. It is a different perspective for him and it makes it easier for him to play and chew on his toys.

Speaking about Parker and his toys, the little monkey has begun learning about gravity and its effect on his toys. Every time anyone gives Parker one of his toys while he is in his Exersaucer he immediately drops in on the floor. For fun, I decided to take one of Parker's light weight, hollow balls and lob it at him so it would land in front of him. The little man would then proceed to grab it and toss it on the ground in front of me. Playing catch with Parker was definitely a lot of fun.

Parker and I have also worked on his crawling while he does his 'tummy time'. I noticed that yesterday for the first time as we worked on his favourite blanket in his room, he started pulling himself across the floor in the forwards direction. I was so proud of the little guy. It was definitely a step in the right direction.

Parker has a trip to Sick Kid's tomorrow to get his ADAGEN injection as well as get weighed. I know he won't be 19 pounds tomorrow but he should be over the 18.5 lbs mark.

I have been working on a new video with Parker climbing over his jolly jumper pillow but it is taking me a while to get enough footage for the video. It is excellent exercise for the little guy but it is hard work and I don't like him getting too much exercise all at once. That and he keeps taking breaks. You know those high paid actors.

Another Trip To Sick Kid's

Parker had his regular Tuesday trip to Sick Kid's today for his blood work and ADAGEN injection. We were hoping that his blood work would come back today with his IgG level up but that was unfortunately not the case. Parker's IgG level was 1.9, the same as last week. As a result, the little monkey will be getting an IV to top up his IgG on Monday at 9:30am. We really hope that it goes better than the last time they tried. They poked and prodded but they could not find a vein that would cooperate.

Parker has been very good sleeping through the night. The last few nights he has sleot until 5:30am when he would wake up for his morning feed. Today, I got up for the feed and forgot to put him back to bed afterwards. We decided to watch TV and play until he eventually fell asleep watching the backyardigans as he finished off his bottle from earlier in the morning. It was back to bed for him at 7:15 and that is where he stayed until nine.

Yesterday was the end of the two weeks that I had set aside for Parker to learn how to sit unassisted. It took an extra day but I am confident that Parker is capable of sitting all by himself. This afternoon he sat for over ten minutes. I have decided that babies will lose their balance once in a while, but he seems to be good at catching himself. We will definitely reinforce his sitting as we do with his tummy time by practicing with him each day.

The votes for the newest poll are starting to trickle in. Make sure to have your say by voting in the most recent "Parker's Weekly Poll".

A Nice Long Weekend!

It was definitely a nice long weekend for our family. We had some very beautiful weather the past few days that we all enjoyed. Even Parker went for a little stroll yesterday. My parents have a beautiful pool and Parker's cousins go swimming quite regularly there. Everyone wishes that Parker was able to also join them in the pool but unfortunately that is not possible for a couple of reasons. First, the little monkey is not allowed to be around other kids so if his cousins are there he is unable to be. Secondly, a pool of water is generally not the safest place to hang out if your immune system is compromised. Even the cleanest of pools would contain quite a few bacteria floating around. So, as it stands Parker will have to spend this summer away from the pool. Learning to swim is something I will not be working with him at the moment. That said, sitting, crawling and communicating are, and for that reason I will focus my time on those.

Parker is very close to being able to sit all by himself. I alternate between him sitting unassisted and with him using the Jolly Jumper pillow. Parker has sat unassisted for a good two minutes at a time; however, I still feel uncomfortable leaving him by himself as he sits there playing with his toys. Although he lost his balance yesterday and bumped his head on his mat, he didn't seem to mind very much. Parker is definitely one tough kid.

We will heading off to Sick Kid's tomorrow for his blood work and ADAGEN injection. We were told last week that we should be able to reduce his blood work to once every two weeks. That would definitely be nice as it would mean one less poke every other week. Maybe tomorrow we will be lucky and his IgG level will be back up over 2.2. It had fallen to 1.9 and for that reason Parker is slated for an IV to increase his IgG level. I am keeping my fingers crossed and hoping for the best as that is what my wife and I are getting very good at.

I am posting a new poll tonight. So check it out and vote for your favourite video of Parker. For those of you who are wondering what the result of the last poll was the message I wrote to my wife our first month in isolation was the winner by quite a few votes. It gathered over 50% of the votes by our readers. You can read it by clicking here.

Congratulations Auntie Natalie and Uncle David!

It is finally official, Parker's auntie Natalie and uncle David made a life long commitment yesterday. My wife and I were extremely honoured to witness the event and I must say it was truly beautiful. It was a very intimate evening and we are so very happy for them. A great day for two very special people.

Parker's mommy and his Nana decided to go to Parker's Nonna's and Nonno's this morning to go for a dip in the pool. So that I could write my article for today I brought Parker's Exersaucer by the computer so I could still keep an eye on him. His being a little loud as he mistakes this apparatus as his Jolly Jumper.

Parker went to clinic yesterday and was seen by the regular group of people. First, he receives his ADAGEN injection from the clinic immunology nurse, then a visit from one of the immunology fellows, and finally he sees a staff immunologist. It was all completed in less than an hour. Parker is now receiving a full millilitre of ADAGEN (PEG-ADA) since he has continued to grow at a steady rate. I had said in my last article that I though Parker would be 18 lbs 8.5 ounces. I was incorrect. Parker weighed in at 18 lbs 6.5 ounces or more accurately 8.365 kg. His length was approximately 67 cm. As I look at him in the Exersaucer I notice that it will not be long before we have to raise it so that it may accommodate his longer legs.

I recently read an abstract by Dr. Aiuti that described a new protocol that he is working on at the mouse stage. It seems extremely positive and just goes to show you that he truly is a world class doctor.

Today will be the last day you can vote for your favourite article on Parker's Weekly Poll. Tomorrow there will be a new poll for you to vote on.

Horseshoe Tournament

A Horseshoe Tournament is being put on by Stomper's Pits Horseshoe Club. It will take place Sat. Aug. 5th at 10 a.m. Sign up time is 9:30 a.m. The cost is $20.00 a person. This fee will include a free t-shirt and lunch consisting of corn on the cob, roast beef and a bun. Please bring your own drinks. Jell-O shooters will be available to be purchased also a card game of guess a card, and a raffle to win one of several prizes. There will be a good time for all who join in the event and most of all the proceeds from the above will all go to Parker to help in his fight against scidada.

The directions on how to get to John Fair Trucking where the event is taking place are as follows:
Come off of highway 115 and turn north on highway 28, go past Pinto's Corner till you come to Cottingham Rd. which is on the left side of the highway. Go about a mile to 780 Cottingham Rd and then the fun will begin. Anyone who can join in this event will be welcome.

Big Boy Car Seat

Parker has his first clinic since only having to go once every other week. I am not sure exactly how much the little guy is going to weigh, but if I had to make any educated guess I would say 18 lbs and 8.5 ounces. Parker has continued to show no sign of infection or illness so I am assuming that it will be a very short visit with the doctors. They will tell us how well he is doing, we will say he is a tough little guy and we will be on our way.

Parker has begun to eat larger meals recently. Today, I decided to mix pears with his rice cereal. He is quite pleased with that. He seems to enjoy the texture of fruit when it is mixed with cereal. His second meal of the day usually consists of two different vegetables and either pears or apples for dessert. It is definitely quite filling but the little guy takes after his dad. He really enjoys food. Actually, the more I think about it, the more I think he just tries to get through the food so he can play with his spoon. Check out the images of Parker having fun with his spoon and cookie.

We have continued to work on Parker crawling over his Jolly Jumper pillow. It is so funny to watch him try and push himself over the pillow so he may get to the other side. To be honest, I am not sure why he is so excited to get to the other side, he just looks around when he gets there. As for Parker's sitting? I am still trying to get him to stay for a minute at a time without any support. He plays with his toys while he is seating and that sometimes throws him off balance.

It was time to purchase a big boy car seat for Parker. So, I made our way over to Mother's Choice in Scarborough where we had purchased Parker's stroller with his Nonna and Nonno before he was born. I still remember how I picked out his stroller. I made an obstacle course around the store and the stroller that I could push through the course in the quickest amount of time was the one we got. It ended up being the Peg Perego A3. It is definitely a great little stroller. When I out his new car seat I found a new "bubble" for Parker. I did not know that Peg Perego made a rain shield for their strollers, but apparently they do. His old rainshield/bubble had worn out and I was looking for a new one. This one is so much better. It is definitely not as fancy as the bubble that the kid on Seinfeld had when he played Trivial Pursuit with George, but is more spacious and has some good features.

Can you say tangent? I ended up going with the Britax car seat because it had the most safety features. To be honest, I had never heard of Britax before but the saleswoman showed me the differences between that and the one I was considering and as a result I decided to go with it. Of course, as soon as I got home I was on the Internet looking up the Britax Marathon carseat to see how it was rated and reviewed. I was not disappointed. I then placed the little monkey in the his new seat and he was very pleased. I still have to raise the straps up a bit but he was definitely more comfortable in that then his newborn car seat.

Lastly, Parker, mommy and myself want to wish auntie Natalie and uncle David a very special day tomorrow. Parker also want to say thank you to his auntie Natalie for always writing a comment for him. Mommy loves reading the comments and she never misses a day when she is home.

IgG Low!

Yes, it is true. What we were hoping was not going to have to happen has become a reality. Parker's blood work came back yesterday and it revealed that his immunoglobulin gamma is low and needs to be replenished. We were hoping for at least 2.2 since that is what he had the week before, but when we got the result of 1.9 we knew he was destined for another IV. We informed the hospital that we would be very accommodating with the date and time as long as we could get the neonatal team to do his IV. Recall that a couple of weeks ago they tried to do his IgG transfusion but were unable to after the nurses were unable to find a vein that would cooperate. Let's hope that all goes much more smoothly.

I forgot to mention that Parker went for his passport photo on Monday. We called Sam's Club before they opened and explained the situation to them and they were very accommodating. We were the only ones in the photo area so we did not have to worry about any germs infecting our son. I am not sure how many of you have tried to take a passport photo of a six month old but having him sit on a stool and not move or laugh and smile is a very difficult task. I must say that I am very lucky that I chose to focus my recent exercises with Parker on sitting. He was quite good at not moving. I did hold him with one hand as a precaution as the last thing I needed was for him to squirm off the stool and fall on to the floor. That said, I did have to make sure that my hand and arm were not in the passport picture.

Speaking of sitting, I did mention a little while a go that I had planned on getting Parker to sit without support in less than two weeks. Parker is just about there. Well, I guess he is there. He has no problem sitting without support for about a minute, but I still find myself behind him waiting to catch him as he falls backwards or forwards. Give the little guy a couple of more days and I will not have to do that.

In addition to teaching him how to sit, I have decided to go full force in teaching my son how to say "Dada". I must say "Dada" a hundred times everyday. I have heard from so many mothers who spend all day with their babies that their first words are always "dada". I am pretty sure that the little monkey will be saying "mama" for his first words. "Mama, tell dada to stop working me so hard!" It's like I tell him all the time, "A little hard work never hurt anyone".

Parker had gone the last couple of nights without needing a feed to get through the night, but last night my wife caved to his crying and got him a bottle at 1:30 am. I know it is hard for her to listen to him cry at night but it is something that has to be done. He has to be trained to go through the night with food just like he learned to hold his head up.

We have started mixing Parker's cereal with apple sauce. Actually, Nanna did. We did decide to follow suit, and as we speak Parker's mom is feeding him mixed cereal and apple sauce and he loves it!

Septra and ADAGEN Day

So today is one of those days that we are definitely not too crazy about. Mommy gets daddy up around 8am (which sounds like sleeping in) so that he can give Parker his Septra. Parker does not enjoy his Septra as there is 3.8 mL of it and I am assuming that it does not taste the greatest. I told him to be weary of anything that is pink! There is definitely nothing pretty about pink when it comes to Parker's Septra. We usually throw the Backyardigans on and have Parker sit on my knee while I try and slowly give my son his Septra over ten minutes.

We got through it, as we usually do and now the little guy is down for his nap. We usually give him his cereal before his nap, around 8 in the morning, but Parker was definitely not too interested. He fought his mommy the whole way. To be honest, it had nothing to do with his mom, Parker was just extremely tired. Daddy tried too, but he got the same attitude. I usually will make sure that Parker knows that mommy and daddy make the rules but he was just so tired we decided to put him down for his nap.

We will be leaving for Sick Kid's in about 90 minutes so that the poor little monkey can give blood and get his ADAGEN injection. I always feel so bad when he has to give blood. It is so unfair for little Parker to have to go through all of this. He has already gone through more than most people do in a whole lifetime.

My three minutes on CFRB went very well yesterday. As soon as I get a copy of the clip I will post it on the site. The said that they were going to be putting the URL on the hosts homepage, but that still has not happened yet. I think I may have to make a call for that to happen.

Make sure to check in tomorrow to see how Parker's numbers turned up. If you have not already, vote for your favourite message in Parker's Weekly Poll on the right sidebar.