What A Great Day For A Picnic!

We had the Picnic today at Wildwood Park in Mississauga. As I had mentioned, my mother and Nonna were born in a small town in Italy called Ceprano. When my mother was only six years old she along with the rest of her family came to Canada. Around that same time many others from that same village came to Canada and made a home in the Toronto area. As a result, they created a social club so that the members of their village had a place to meet. Each year, the Ceprano Social Club holds a picnic with a Mass on a Sunday in the summer. This year, they decided to dedicate the picnic to our little boy Parker.

Everyone had an absolutely wonderful day. The Mass was in Italian so I got to try and make out some of the words I have been learning. The thing about learning a new language for me is that I recognise alot of the words I just don't know what they mean. After the Mass, all the different famililes gathered around their picnic tables and ate all of the great Italian food that they had brought. Then, one delegate from each table would bring a large bowl to a centralised area where some of the men from the social club were cooking extremely large pots of sauce and pasta. Just like anything else Italian I have ever been too, I definately did not leave hungry.

Later in the afternoon, there was a Bocci Ball tournament. My partner and I had a very important match right from the beginning of the tournament. We were pitted against my father and brother, who were extremely confident after all of the American bowling they have done in the past years. It took no more than fifteen minutes for my partner to rack up twelve consecutive points to win 12-0 and move to the next round. I am not one to rub a little victory in someone's face but what good is beating you dad and brother if you can't gloat a little. The next game was a little more difficult as we had to face last year's champions. I guess you can't win all of the time.

My wife and I really enjoyed ourselves at the picnic and are hoping to bring Parker next year with his new and improved immune system.

I spoke with a woman from CFRB this afternoon, and she asked me if I would go on the Ted Woloshyn show. I am scheduled to go at 6:50am during the morning rush hour for a three minute slot. If you are up then have a listen. If not, maybe I can get the sound bite for you to hear shortly.

Parker's Weekly Poll

I have decided to add a new feature to the blog. I have named it Parker's Poll and it will allow the users of this blog to vote on a different topic each week. The first poll is to see what everyone's favourite article is so far. I went through all archives to look at the last 115 messages and chose seven that I felt were among the best. You can select your favourite by choosing the article you enjoyed the most and clicking on the vote button. You may want to reread the articles so that you may make your vote really count. Each week I will change the topic for the vote.

Parker and I have continued to work on his sitting. I said that I would have him sitting in less than two weeks and we are definitely almost there. He should have no problem reaching that goal by the end of the two weeks.

Tomorrow is the picnic at Wildwood Park in Mississauga. The mass begins at 11am and I think I am saying a few words prior to the start of the mass. I am really looking forward to the picnic as it should be a lot of fun.

Parker has been doing a much better job at sleeping at night. He did get up a couple of times last night, but to be honest, I tried to sleep through it while my wife tended to his needs. I know I feel bad, but I will be the one who gets up tonight if he is hungry.

Parker has recently tried bananas and green beans. I must say that he is definitely not a big fan of the bananas but Nanna did a good job getting him to eat the beans. I am a little perplexed at who would like green beans more than bananas; however, I am not one to talk about eating habits.

If you have not gotten your ticket yet for the benefit dinner we would love to have you there so get yours today. In addition, try out this weeks poll and let us know what your favourite article is.

Thank Goodness For GrandParents

I figured it was time to thank a few people that haven't gotten a thank you in a little while. Yes, I am talking about Parker's Nonna, Nonno, Nana and Grand-dad. The four of them love the little guy so much and Parker just adores them. Both grandmothers are working extremely hard on the benefit dinner as they try to increase the number of tickets being sold. I am so happy to have a mother and mother-in-law as loving and helpful as these two.

Grand-dad and Nonno also do their part. Nonno and Nonna are throwing a garage sale tomorrow to help with fundraising efforts. Although Parker does not see his Nonno everyday, we are still pretty sure his first words are going to be "Nonno". That said, I think Parker's favourite thing in the whole world is to spend time on his Grand-dad's shoulder as he looks around the room. I think that one of the greatest things Parker has going for him is his Grand-dad and Nonno's height. ADA deficient children who have successful treatment are much shorter than they normally would be if they were void of this disease. The fact that Parker's Nonno and Grand-dad are both over six feet three inches is definitely a good thing. He may be a little shorter, but he should be at least five and a half feet with those genes working on his side.

Lastly, I would like to mention Parker's trip to the hospital today. It was the shortest trip to the hospital he has had yet. We were in and out in less than thirty-five minutes. All he got was a weigh-in and his ADAGEN injection. Parker weighed in at 8.295 kg or 8 pounds and 4.5 ounces. Way to go little buddy. Parker also wore number four diapers for the first time today.

Strong boy!

I am telling you this is one strong little boy. I have decided that I could show Parker that his body needs to be higher up if he eventually wants to crawl. Everyone who has even met the little monkey has always commented how strong he is, especially his leg muscles. I think he gets his leg muscles from his dad. As I was saying I have placed Parker on his tummy with his arms hanging over the Jolly Jumper pillow and the little guy crawled right over it. He used his legs to push up off the ground and then with one big push he was over the pillow doing a face plant on the other side. Me being the tough dad, figured I would leave him live that to see what he would do. The little guy used his arms to prop himself, used his legs to push the pillow away and he was up doing his regular tummy time. I am working on a video of Parker doing just this, and as soon as it is done in the next day I will place it on the site. So please check out the videos on the right sidebar.

I guess I should mention his numbers from Tuesday's trip to the hospital. The big number that we have been following has been his IgG levels. It had steadily been decreasing for the past ten weeks until finally last week it seemed to stabilize and actually increase slightly. That said, it was unfortunate that Tuesday revealed it had decreased slightly once more time. We are hoping that it does not continue to decrease as it would mean Parker would have to obtain the IgG through an IV. This is something that we have not had very much luck with.

This Sunday is the picnic at Wildwood Park in Mississauga. The mass begins at 11:00 am and then will be followed by some wonderful festivities. If you want information on how to get there, you can check the right sidebar.

There are a lot of tickets still available for the benefit dinner on August 18th. You can get your ticket by emailing my mother. If you have a company or work for a company that would like to purchase a table please let us know as well. We are making sure to credit the different companies at the event. Make sure to get your tickets soon.

Sitting Can Be Fun!

So I had mentioned yesterday that I was going to be working on sitting with Parker. Well, the two of us I did just that. I decided to pull out the Jolly Jumper pillow and set it up in front of the Backyardigans. I sat little Parker there in front of the TV and he did not move for the whole twenty minutes. He did an excellent job. I tried moving the pillow a couple of times to see how he did. He would usually be fine for a few seconds and then would place his hand on the side of the pillow so he would not fall over as he watched his show. I must say that I was definitely very pleased with how he did.

We went down to Sick Kid's yesterday for his blood work and ADAGEN injection. They needed to take more blood for the TREC test they had planned on doing a few weeks a go. Apparently, the amount of blood they took last time was not enough. So they took another 5 mL of blood to add to what they had frozen from before. I am not sure if it will affect the test having two blood samples so far apart. What if this blood sample shows that more of the naive t-cells are present with the receptors than last time. The two are going to be mixed together and we are going to obtain a sample with a number of naive t-cells that is an average of the two samples. To be honest, I think it is too early to see much in either sample.

I went to watch Parker sleep for a bit last night, and I must say that it is so nice watching him breathe as slow as he does now. I remember when he was just a week old, or even when we were at the hospital in Scarborough he would breathe so hard and quickly that his head would bob back and forth. He would sometimes breathe 100 breaths in a minute. Try breathing fast enough so that you breathing twenty-five times every fifteen seconds. It is hard. We did not count his breaths last night, but it must have been in the low thirties.

Ticket sales for the benefit dinner for Parker are starting to pick up slowly. There is a few weeks to go before the dinner and I really want to see us sell at least 300 tickets. We still have a ways to go still. So if you are interested in a great evening for an excellent cause please email my mother for information on how to get tickets for Parker's Journey on August 18th.

A Visit From Friends

Today we had a visit from two of our best friends. We don't normally get many visitors around here so it was nice to have them over. I am not that big on using names when I write my articles but I shall here. Natalie and David both teach so it was very difficult to see them during the duration of the school year. It is so imperative that no germs come in contact with the little guy that we have to limit contact with friends to do so. That said, the school year is over and we were so pleased to have them come by to see our little guy. They know the rules regarding Parker so that made life easier.

Parker spent a good two hours today hanging out with his Nana and Granddad since the four of us went to my parents for a relaxing day by the pool. Parker loves spending time with his Nana and Granddad and is so good to them when we are gone. I think one of Parker's favourite things is lying on his granddad's shoulder as he walks around the house. I don't think I have ever heard him cry when he does that.

Daddy has been working with Parker on his sitting as he does not sit by himself for an extended period of time. I have decided that it is Parker's and daddy's goal to have him sitting by himself within two weeks today. It is going to take a lot of work but the two of us can do it. We already do a couple of tummy time sessions a day so I think I will just change one of those to a sitting time, and then have him watch TV using his sitting pillow once a day. That will definitely keep his attention.

Tomorrow we head down to Sick Kid's for the Parker's enzyme replacement therapy, and to give some blood. Let's keep our fingers crossed that his numbers start to increase soon.

A Lot Happens in A Couple Days

So it has been a couple of days since I have written. I don't normally like having a couple of days without an article but I thought it was really important to keep the article up about Parker's Journey for a few days. If you have not read it, I really hope you take the time to do so. It is the article from Friday, July 21st.

So where do I begin? I guess, I should start by talking about Parker's clinic day. It was quite uneventful. He started by getting his weight taken, 8.155 kg. For those of you that work in pounds, that is 17.98 lbs, just shy of 18 pounds. Then it was off to get his ADAGEN injection. Parker is held in his mother's arms while the clinical nurse gives him the injection in the muscle of his thigh. We had to wait quite a bit this Friday to see the fellow and the staff immunologist as they were very busy with some out of town patients. Once they did get to see him, it was pretty much in and out. Parker is so healthy at the moment that there really is not much for them to do or say about the little guy. They did realise this by letting us know that starting this week, Parker only needs to be seen by the doctors every other Friday. We will still get him weighed on Friday, and he will still get his injection of ADAGEN on the Friday, but he will not have to wait for a doctor to see him every Friday. Tuesdays will remain the same by him giving some blood so we can see how his numbers are later that day. We are definitely very pleased that the staff immunologists think that Parker is doing so well right now that his clinic time is being cut in half.

On Saturday, he had the SCID picnic. This afternoon is dedicated to all of the children and their families who have gone through the ordeal of having a Primary Immunodeficiency. It was held in Markham at a camp ground. Parker was the only ADA deficient SCID there among the 15 or so families. He was also the youngest and the only one who has not completed their treatment. The oldest person there was a SCID who had a Bone Marrow Transplant 18 years ago.

It was really nice going to the picnic, as we are not accustomed to taking Parker out in public, especially around children. The comforting thing about it was that everyone knew the severity of the disease and as a result, we were assured that no one was sick that was there and everyone was making sure to stay germ free by using sanitizer whenever possible. At one time, they took a picture of all the SCIDs together. There were no parents, and no doctors, only the children who had gone through this terrible ordeal. Parker enjoyed the picture and was held by the oldest SCID there for the picture. We are looking forward to going to the picnic next year when Parker is a year and a half and has completed his treatment.

My wife has become friends with a very special person the past couple of days. She is the oldest ADA deficient SCID that we know about. She received her Bone Marrow Transplant over twenty years ago and has shown us that you can live a good life after being diagnosed with this disease. She had seen the article in the newspaper back in May and has been trying to get a hold of us ever since. She finally did a couple of days ago and we are very happy that she did.

I finally received my Immunobiology text the other day. I must say that it is extremely informative and I am very glad that I have it. Once I had read a bit more, I promise to write another article amount Parker's immune system. It is interesting going back to read what I have written about the immune system and Parker's disease. I like seeing how my knowledge of immunology has evolved since March when I started writing about his disease.

I had mentioned in the last article that I was going to be going on CHINTV today. My wife and I headed down to Little Italy, where the CHIN Radio building is located so that I could do my interview. I must say that the people at CHIN are among the nicest people around. They were so friendly and I felt completely at ease the whole time. I watched the interview when I got home and I was very pleased at how it went. The fact that they made me feel so comfortable really made the difference. Thank-you so much for letting us tell our story. We look forward to seeing you at the dinner on August 18th.

For those of you who want more information about the dinner please read the following article from Friday. It is going to be a wonderful event with great prizes. Here is a picture of Parker with a hockey stick that was donated for the auction by Maple Leaf Sports and Entertainment. The stick contains all of the players' autographs. We would love to have as many people come out to support our cause as possible. So check out the next article and use the link at the bottom to get your ticket today.

Parker's Journey

We are just under a month away from the Benefit Dinner that is being thrown on Parker's behalf. It is titled Parker's Journey and is being held on August 18th. My mother's cousins came up with the idea a few months ago and have done an absolutely incredible job planning and organizing the evening. I have decided to dedicate this article to the event as it is going to be such a wonderful evening and so many people have dedicated their time to it that I want everyone to know about it and have the opportunity to get a ticket.

It is being held at the La Primavera Ballroom in Woodbridge. If you have never been there or seen it, I have to tell you that it is absolutely exquisite. It is such a wonderful place to hold any function. My mother's cousin got married there and it was a beautiful wedding. The people at the La Primavera Ballroom have worked very closely with us so that the event may be a very successful and memorable one. We are so happy to have them on board.

For those of you who are interested in the food and drink that will be available, I must say that you will not be disappointed. The evening will start with an incredible Antipasta Bar. There will be something there for everyone. The pasta course will be a penne done in a fresh tomato and basil sauce as well as a risotto with portobello mushrooms. I have to tell you I absolutely love risotto. For those of you who have never tried it, you don't know what you are missing. The main course will be a veal chop with mushroom gravy, seasononal vegetables and salad. The dessert, ice cream supreme with fresh berries. This will be followed by coffee and fresh fruit. And, for those of you who like a good drink once in a while, you will definitely not be disappointed. The evening will begin with a Martini Bar, and throughout the night you will have the Deluxe Bar available to your palette.

The tables will be decorated with flowers by D&D Floral Design. I have checked out their website and they have the most beautiful flower arrangements. D&D Floral Design has been extremely generous and has decided to donate their floral arrangements for the evening. We are so thankful for their generosity.

In addition, the music will be supplied by Veriation Music. The disk jockey from Veriation Music will be playing a spectacular array of music for the dance after dinner. We are looking forward to dancing the night away with all of you who come out to support Parker's Battle with ADA. Veriation Music has also been extremely generous by donating their services for the evening. If you have a wedding or function coming up, you should definitely check them out at their website.

There will also be a gift bag available for each couple and has been donated by Dolce Magazine. If you have not checked out there magazine or website previously you really should do so. Dolce Publishing is also the publisher of City Life. Thank you so much, Dolce.

There will be many wonderful prizes that will be auctioned off that evening. There are so many sponsors that I would like to thank who have donated for the event already. I plan on doing just that in an upcoming article.

I want to take the time now to thank CHIN TV for also helping in promoting this event. I will be on Festival Italiano Di Johnny Lombardi this Sunday at 11am on City TV. You can check out the show for more information about the event. We are extremely happy and honoured to have Andrea Trentadue and Sam Ciccolini as the M.Cs for the evening. Andrea is one of the producers from CHINTV and Sam Ciccolini is a man that I cannot say enough about. Sam Ciccolini has done so much for the community and we are so happy to have him on board.

There are two ways to purchase tickets for the event. Many companies have decided to get on board by purchasing a table (a table seats ten). If you work at a company and you think they may be interested in purchasing a whole table we would appreciate their support. There is currently room for 150 more guests and we would love to meet the people who populate this blog regularly. If you are interested in coming out to support our son in his battle against severe combined immunodeficiency you can email my mother here.

Rash Is Getting Better

I am pretty sure that Parker's rash is improving. Although, I cannot confirm that it is a heat rash, we are all pretty sure that is what it is. It has definitely not completely gone away yet, but the red dots are much less prominent. The rash around his ears and in the folds of his neck have also diminished quite a bit. I am guessing that the corn starch and lack of clothes we have been putting on him have been helping. We will be heading down to Sick Kids tomorrow for Clinic and they will look at it for us again. I would be very surprised if they had the dermatology team look at his rash now, but I would definitely not be against it.

I put Parker in his Jolly Jumper this morning after a couple of days of not being in it. With Parker not wearing any clothes except for his diaper we did not want to irritate his skin with the support system for the Jolly Jumper. This morning we have him in a one piece outfit that his loose around the neck in hopes that it does not cause him to sweat. As soon as he has his next diaper change he will be going diaper and booties only.

I must say that my son is getting taller. Those of you that remember some of his images from earlier will notice the purple pads under his feet while he is in Exersaucer. Parker no longer needs the purple pads as his feet touch the ground completely. We were told by the occupational therapist that it is important that their feet are flat on the ground when they are in their Exersaucer as it will cause problems when they learn how to walk otherwise. Yesterday, I noticed that Parker not only had his feet flat on the ground but his knees were slightly bent. Maybe he is going to be tall like his Nonno and Granddad.

Parker's Journey, a benefit dinner for Parker, is going to be taking place on August 18th in Woodbridge at La Primavera Ballroom. It is going to be an excellent event. There have been so many people working on it. We want to get as many people out to the dinner as possible so please check the right side bar at the top for some information about the event. Later today I will be posting an article dedicated to the event to give everyone some more information about what it entails. So please come back later today to read about Parker's Journey. Get your tickets early as we want to make sure that the event sells out. We have over 150 tickets left for sale so please get yours soon.

Patience...

It has been around 11 weeks since Parker started getting his enzyme injections. His numbers are higher than they were before he started taking the injections but only because they were non-existent pre-ADAGEN. We do know that it takes a while for the injections to start to take more of an effect, so I guess we just have to have some patience. That said, his IgG came back 0.2 higher than last week. This is the first time it has ever increased by itself. This is definitely a good sign. It most likely means that his body it starting to predates the antigen by itself. I am hoping that the result of the TREC test that checks the number of naive T-cells coming out of the thymus is available for clinic this Friday.

As a scientist, I understand that a number is useless without its units and error. I say this because a lot of the numbers I get for the blood work come to me without a unit on them. This Friday, when I am at clinic I will be asking what the unit is for the numbers that they have been giving me. It is kind of hard to compare them to the normal values when I am unsure of what the units are. I mention this today, because Parker's calcium level is high. When he was on highly concentrated formula it was also elevated. Once his formula was made with the regular amount of calories, they stopped taking his calcium levels with his CBC. I had requested that they been done a couple of weeks ago and yesterday it was done and came back with the value 2.52. It is frustrating not knowing the unit for that value. We were told that 2.44 is the upper limit for calcium in the blood. I found the range 2.2 - 2.6 on the Internet as being normal.

I ordered the first year immunology textbook that the medical students use at the University of Toronto a couple of days ago. It should be here today. Those of you that have been reading the blog for some time now will know that I believe knowledge is extremely important as I go through this with my son. My family has come to expect that I be as knowledgeable as possible about his disease so that we can obtain the best care available. I guess it is like getting your car fixed. Most people do not know much about cars and when they go to a mechanic to get something routine done they end up getting a whole lot more. Why? Because when someone tells you something is wrong and you have no idea what they are talking about it is hard to dispute it. I am definitely not comparing the doctors at Sick Kid's to my mechanic but there are definitely some similarities in my analogy.

Parker slept until 4am last night. He probably could have slept through that but my wife gave in to his stirring and baby calls. He is currently in the other room having a conversation with his Nana.

We had the immunologist look at his rash yesterday. They feel similar to what I do in that they believe it is a heat rash and fewer clothes, corn starch, and no moisturizer is what we should do at the current time. If it does get worse, and does not improve by Friday, then the dermatology team will take a look at him during our Clinic. Let's hope that it is only a heat rash. I like knowing that Parker was kept free of infection while staying in our care instead of his isolation room.

Hoping His Numbers Go Up

I am writing this message nice and early this morning which should put me back on track for my daily articles. I know that we have quite a few visitors each day so I don't like to disappoint people by not having an article for them to read when they get here.

Last night, Parker went down around 7:30p. We were hoping that we could get him to sleep through the night like he used to so we were keeping our fingers crossed. It was around 9pm that the little monkey started crying, but it was short lived. He just needed someone to hold him while he burped. He usually gets a feed right before bed. Most of the time he falls asleep during the feed and he doesn't always give us a burp at the same time.

At half past one, he started to cry softly but we let him settle himself and everyone was happy. Then at four in the morning, he decided he wanted some attention so our little experiment ended there. Parker ate five ounces of food and then went back to bed for a few hours. Currently, he is getting a bottle by his Nana while my wife tries to get some rest.

On Tuesday, Wednesday and Thursday Parker gets his Septra. For those of you who have forgotten or are knew here, Septra is a precautionary measure for PCP pneumonia. He receives 3.8 mL three times a week orally. My wife used to give him the medication, but feels more comfortable when I give it. So, at 9:30 this morning, I will give Parker his dose of Septra.

Parker has a trip to Sick Kid's today. Every Tuesday and Friday we make our way down to the hospital for his enzyme injection. I really am hoping that the ADAGEN starts taking a greater affect. We are waiting for his numbers to come up so that he is less susceptible to germs. I know it takes a little while but we have been waiting a couple of months now and would like to see his lymphocytes increase in numbers. We have been told to be patient.

I inspected Parker's heat rash this morning. It does look better. It is definitely going to take a few more days of cool air and corn starch but I know we will rid him of it shortly.

Let's all hope that his numbers increase the way we are hoping they will today.

A Day Away

I will begin by apologizing for not writing yesterday. My wife and I had planned on going to Buffalo and Niagara Falls for a night for a well deserved rest. Nana and Granddad were given the okay to watch the little guy for the duration that we were away. I had planned on writing articles while I was away, but I was unable to locate Internet access at our hotel.

Although we were excited to get away for a night and get a whole nights rest, we did miss our son very much. How much you might ask? Well, last night my wife awoke from her sleep, sat up and slapped me in my sunburn as he she screamed, "Where is Parker?".

The past week we have noticed a rash on the back of Parker's neck and around his ears. When we came home this morning we had noticed that it had gotten quite worse. The doctor's at Sick Kid's in Toronto had said that they thought it was a heat rash when we were there on Friday. After looking at it today, and doing a little bit of reading on the Internet, I would have to agree. It seems to be concentrated in the folds of his neck, and around his ears. It looks very uncomfortable but he does not seem to be complaining much about it. My wife is currently giving the little monkey a good bath, and we have decided to let him go without a shirt on for most of the day so that he is not too warm. I don't want him sweating and having it get worse. We are also using cornstarch three times a day in the folds of his skin where it is much worse. If you look closely at the image below you can see the redness on his neck. I have included an image of the rash. You cannot see the portion in the folds of his neck, but you can see the red bumps. Parker also has some lighter red dots on his stomach.

We wondered how Parker would sleep with us not here at night. When we were at the hospital we were unable to stay over night and for that reason, if Parker were to awake in the middle of the night the nurses would have to console him and feed him. Would you believe that Parker slept through the night last night. How does he know that we are not here? It is not like we jump up if he makes a noise in the night. We only pick him up if he is crying or screaming and it does not seem that he is going to stop. But last night, we are told he didn't scream or cry.

To say the least, we were very glad to see Parker when we got home today.

When Is Getting 50 Percent A Good Thing?

For those of you who have been following the blog for a while, you will know that my philosophy has been play hard work hard with Parker. Parker and I spend quite a bit of time playing which is really my way of making sure he does not fall behind developmentally. Even before Parker was diagnosed with ADA deficiency at six weeks we were doing 'tummy time'. I remember Parker having an IV in his foot at five weeks of age in General Paedeatrics at the Hospital for Sick Children and I would place him on his tummy for short periods of time as we worked on getting him to raise his head.

All the hard work that we have done has definitely paid off. The first thing that all the doctors and nurses have said about Parker is how strong he is. That said, it is not hard to believe that I would be a little disappointed with Parker if he were to bring home a test from school one day in which he obtained a result in the 50th percentile. But today, when we met with the dietician we were delighted to hear that he was not only at the 50th percentile for his weight and head circumference but also for his length. Yes, my son reached the 50th percentile for his length today.

Today, when Parker's length was taken it read 66 cm. I have been very concerned about his length readings, as the apparatus being used gives way to quite a bit of error if proper care is not taken when taking the measurement. So today, I made sure to help in taking the reading. When we were upstairs in isolation there was a much more accurate piece of equipment that they used so that such care was not needed, but I felt comfortable in our ability to obtain a correct reading.

I was not that surprised when it read 66 cm as I have been noticing that he no longer needs the padding under his feet in his Exersaucer. It has really been the past week that I have not been using the purple pad.

On a less exciting note, but still important Parker weighed in today at 8.000 kg or 17 pounds, 9.6 ounces.

Early To Bed ... Early To Rise

We had mentioned that we were going to change Parker's nap schedule in hopes that we could get him to bed a little earlier than 10pm. After a couple of days of making his afternoon nap only 30 to 45 minutes long we have been able to get Parker to bed around 7pm. That said, he still wakes up a few times during the night for feeds. The first time has been before midnight, and the others are around two and six in the morning. We are going to have to find a way to change his habit of getting up in the middle of the night.

I have decided that Parker really enjoys playing with his food. It may be a little bit messier but the last two times I have fed him he was much more accommodating when he could touch his food with his hand and even take the spoon once in a while to try and put it in his mouth. I figured that it not only gets him to eat the vegetables and cereal but his motor skills are getting a work out as a result.

I am pretty sure that Parker is getting taller. He does not need the purple pad under his feet in the Exersaucer any more. The occupational therapist had asked us that we make sure there is something under his feet so they are flat on the ground. Apparently, it can cause problems when they try to walk if he is always on his tippie toes.

Okay, picture this. Mommy is in her glider with Parker doing a 10pm feed and Parker sound a sleep in her arms as he sucks on the nipple of the bottle with great vigor. All of a sudden, the little monkey sucks so hard that he dislodges the nipple causing three ounces of formula to come crashing down on his face. Poor little guy. It didn't phase him though. He didn't cry, but waited for her to fill up the bottle with more formula so he could finish his feed and go back to bed.

Parker has clinic again tomorrow morning. We will be seeing the dietician to see how she thinks he is growing and eating. We are hoping that he is getting taller so that his weight and length are in similar percentiles.

Tried Beechnut Baby Food Today

I got an email from a woman today who had mentioned that her child enjoys Beechnut baby food and that maybe we should give it a try. I decided to go out this morning and grab a few jars of the different vegetables for Parker. I decided to do the feeding early this afternoon while mom went out for a bit. We tried the sweet potato today. At first look the Beechnut sweet potato is a brighter orange than the Heinz, so I took that as a good sign. After heating up half a jar, I decided I would have a taste. To be honest, I had yet to try any of Parker's food yet so this was something new. The small little bit didn't taste half bad. It tasted like a watered-down sweet potato.

To be honest, Parker made a very strange face when the first spoonful went in. That said, I figured the more he had, the more he enjoyed it. He did eat the whole amount I had set aside for him. Today, since mommy was away, we decided to have a little fun while eating. Not that eating with mommy isn't fun. That said, solid food eating is usually a very clean event. Today, I let the little monkey stick his fingers in the food a couple of times, and at the end I even let him put the spoon in his mouth. It was a little bit messy, but we cleaned up right after. Tomorrow, we will have the other half of the sweet potato. Maybe carrots the next day. He was not too fond of the Heinz carrots, so maybe he will like the Beechnut brand better.

Yesterday, we experimented by giving Parker a short nap in the afternoon instead of a long one in hopes that he would go to bed earlier. The result was him going to bed from seven until eight and then being up for another 90 minutes before going back to bed. To be honest, we were happy with that. Today, he napped for 90 minutes in the morning and is currently down for a 30 minute nap from 4:30p to 5:00p. Let's hope that he is really tired at 7:30p and will sleep through the night. When Parker was in isolation he would go to sleep around 6:30/7:00p and then sleep until 6am the next morning when he awoke for a feed. I guess with all the excitement here at home the extra stimulation makes it hard for him to nap. I will definitely let everyone know how it went tomorrow.

IgG Is Okay

Parker had his regular trip to the hospital today. He gave blood as well as had his ADAGEN injection. For those of you that are new, ADAGEN is the brand name for PEG-ADA that he receives .

We were hoping that the blood test would reveal that Parker would not have to get an IV to replenish his immunoglobulin Gamma (IgG). We got a call this afternoon, like we do every Tuesday, and we were informed that his IgG level was pretty much unchanged and would not have to get an infusion of IgG. We were very happy to hear that, but at the same time we were pretty much expecting that it was not going to be much lower than last week.

The rest of Parker's numbers are relatively unchanged. His polys (neutrophils) are a little lower than last week, but still in the normal range. We don't want to see it go any lower than it is, as the last thing we want is Parker becoming neutropenic again. Parker's lymphocytes are also not as high as we would like to see them. We are still waiting for his T and B cell production to increase. Once his T-cells increase they will help his B-cells produce IgG.

Parker gave some extra blood to check the number of T-cells that are coming through the thymus gland. It is called a TREC test. Remember that a T-cell is called a T-cell because it is matured in the thymus gland. I don't feel like doing a whole article on TREC but if you would like an excellent source on it, here is the one I used to learn about it.

I video taped Parker making the gasping noise and had the clinic nurse from immunology watch it today. She did not feel it was anything to worry about. My sister-in-law called me today after she read yesterdays article to tell me her son does something very similar. So, I guess I will not worry so much. But, that does not mean I have to like the sounds.

Stop With The Gasping Already!

Okay, I am pretty sure it is nothing to be concerned about but it sure is nerve racking listening to him gasp for air. Now, he only does it when his mouth his closed. And he does not look distressed at all when he is making the noise. I know if I were gasping for air I would definitely look freaked out. I had mentioned that he does it when he is laughing, but he just recently started doing it when he is having his bottle. Yesterday, Parker's Nana counted his respitory rate for a full minute and recorded 33 breaths per minute. Today, after Parker's walk we counted 35 breaths per minute. So, he does not seem to have a problem breathing when he is resting. It only seems to be when he is playing or eating. We spoke with the clinical nurse for immunology today to let them know of the sounds he was making and asked if they could check it out tomorrow at the hospital.

On a less stressful note, I took some pictures of Parker in his crib yesterday morning. When he gets up at seven in the morning and does not want to go back to sleep I usually put him in his Exersaucer for some play time. I figured I would take advantage of his cuteness by taking some pictures in his crib while he hung out on his tummy. The kid knows he is cute so he always plays it up for the camera.

Parker tried carrots for the first time today. Another orange vegetable. Remember, it's orange yellow and then green. I wonder where red comes into the picture? I am not sure if he really enjoyed his carrots. He did make quite a mess of them. Right now we are using the Heinz bottled baby food, but I think I will be making his food eventually.

Let's all hope that his IgG level is up tomorrow and the gasping sounds are nothing.

World Cup Champions!

What a great day to have some Italian blood in you, and Parker does have some of that. My wife and I went over to my parents today to watch the big game with the rest of my family. Parker stayed home with his Nanna and Grand-dad wearing his Italy shirt as we wanted to make sure to keep him germ free.

We were a little disappointed with the referee calling a penalty shot against the Italians seven minutes on a blatant dive in the box, but we had faith. The Italians came back and got one in the first half and then another in the second half. But again, a bad offside call by the linesman had the Italians even at one again with the French. We were all on pins and needles during the shoot-out as we watched the French hit the crossbar. In the end, the Italians came out victorious and for that we are happy. My parents took my 84 year-old Nonna (Parker's Nonni) to Little Italy afterwards where she sat in the back of the SUV shouting out at the other Italian fans that packed the streets. Way to go Nonna!

The Italians winning the World Cup this year is a sign to us. Parker is going to Italy for his treatment at the end of the year and we felt that this was a positive vibe for Italy.

On a non-World Cup note. Parker started making some weird sounds the last day. It sounds like a gasping for air noise, but he only does it when he is laughing or playing. Now, I honestly think it is just him experimenting with his voice, maybe trying to get attention, so I try not to stress about it. But with Parker's previous lung problems it does worry us quite a bit. Last night while he was sleeping, he didn't do it all. When he played in his Exersaucer this morning and JollyJumper yesterday he did it quite a bit. So we are not really sure what is causing it. He never looks in distress when he does it. He will even smile afterwards or finish with a laugh. We will definitely be asking someone about it when we go to the hospital on Tuesday for his blood work and ADAGEN injection.

Let's all hope that Parker's IgG level has not decreased any further than it was last week. If it has, it will mean an IV to top him up with some more Gamma immunoglobulins.

Century Post

I can't believe that it has been a hundred days since Parker was moved to isolation. I started writing messages the day he was placed in isolation and although there have been the odd day that I have not written a post I do try my best.

Today we were pleasantly surprised at the support that we have received in Durham. Not Durham North Carolina, but Durham Ontario where Ajax is. We were contacted a few weeks back when the article in the Toronto Star came out from a woman in Ajax. She, with her sister-in-law own a little shop in Ajax that sells very beautiful furniture and accessories for the home. They wanted to do a fundraiser for Parker.

Today, they had a special sale at their store. They sold raffle tickets, had an outdoor sale, as well as donated 10% of their total sales to Parker's cause. We dropped by today during the sale and were so surprised at the turnout and support we got from our community. We are so very appreciative.

If anyone is out this way, you really should drop by their store and take a look around. They really do have some very wonderful stuff there. They do have a website, so you can get directions from there. Thank you so much to everyone who took part.

Poor Parker

I had mentioned yesterday that we had our regular trip to clinic today. The major difference was that Parker was to be getting an IGg infusion via an IV. Those of you who have been reading the blog for some time now will know that we really have not had alot of luck with IVs. When Parker was still on the General Paediatrics Unit he used to get poked quite a bit. It is also when he had his first IV. Then, when we went to the isolation unit, the pokes (taking blood) and IVs continued. By the time Parker was three months old he had exhausted all of the veins in his hands and feet. From then on, any IV had to be taken from a vein in his head. I know that inserting an IV into a child is something that nurses do every day, but inserting an IV into an infant is not. The Hospital for Sick Children have a specialists IV team that sole purpose is to run IVs. But even they had difficulty with Parker in isolation. Even more specialists then them are the neonatal transport team. They are used to working with babies and for that reason, it go to a point where we would only let them run IVs for Parker, especially the ones that go into his scalp.

We knew that Parker was going to have to get an IV today. But it has been almost two months since he has had to get an IV, and almost four months since he had gotten an IV in one of his limbs. For that reason, we figured that his veins would have increased in size a bit and obtaining a vein in a limb would be possible. Unfortunately, for today, the neonatal team was not available so an experienced team of nurses attempted to run the IV for Parker.

After twenty minutes of holding Parker down while he cried uncontrollably, after three attempts at placing an IV in his hand, foot and scalp, we decided that today was not going to be the day for Parker to be getting an infusion of IGg. We spoke with our contact in immunology, and requested that if Parker still needs the infusion next week that they try then. Parker gives blood every Tuesday, and we are hoping that when his results come back Tuesday afternoon his IGg numbers have not decreased any further illustrating that he is actually starting to make his own. The last few weeks his IGg numbers have been decreasing at slower rate each week.

We felt so bad for Parker having to go through that today. We know that it is difficult to get a vein in Parker and for that reason we prefer using the neonatal team for his IVs. The nurses did the best they could and felt absolutely terrible for Parker.

My wife and I know that when we go to Italy Parker will most likely still be difficult to run an IV for and we will have to take that in stride. I know that we may seem to be high strung and difficult as we prepare our son for "The Show" but that is something I feel is important.

Those of you who have seen the movie "Bull Durham" will recall that Kevin Costner, who played a veteran catcher in the minor league worked with a young Pitcher played by Tim Robbins. Costner spent the whole time helping Robbins make his way to the majors. In the movie, the referred to the majors as "The Show". We are playing the part of Kevin Costner right now. We are doing everything that we can as parents to get our son ready for "The Show" in Italy.

Yummy Vegetables!

Parker had his first taste of food that was not cereal or formula today. Parker had sweet potato. We figured that he would enjoy the sweetness of the sweet potato, and he did. I don't normally do the cereal feeds, or the formula feeds for that matter. Whenever, I try to give Parker his cereal, he does not volunteer to open his mouth when the spoon comes, but today it was a different story. As soon as the spoon got close to his mouth, he opened wide. If feeding Parker is going to be this easy, I am going to do it as often as I can!

It is sort of like changing his diaper. I always try to change Parker's diaper as often as possible. That said, I always make sure to take a quick smell first. If there is something that smells a little disturbing I try and see if I can put it off until my wife is close by. She will notice the smell, and will change him right away. That way it looks like I do my share of diaper changes. I figure that if feeding the little monkey is going to be easy when I do sweet vegetables, I might as well take advantage of it.

Parker had half a jar of the sweet potato and will have the other half tomorrow. If tomorrow goes as well as today, then we will probably try the other orange vegetable on Saturday. Carrots are probably very sweet as well. They say that the order of vegetables are orange, yellow, then green. To change the texture of his vegetables we will eventually add a bit of his cereal in it.

Parker has clinic tomorrow. That will mean another enzyme injection. Unfortunately, Parker is going to be getting an I.V. tomorrow to top up his IgG level. An extra two hours at Sick Kid's. In the past, Parker had to get his I.V. in his head but we are hoping that his veins are large enough in his hands that they will not have to use his head tomorrow. I feel terrible for the little guy. Let's hope that this will be the last time he will need to be given an IV for his IgG.

Thank You!

There were a couple of fundraisers done for Parker in the past few weeks, and I would like to acknowledge and thank the people that were involved. First, I would like to thank the people of Peterborough and the Fidyl-Styx for putting on a wonderful show a couple of weeks ago. Although my wife and I were unable to attend, we were told by Parker's Grand-dad and Nana that it was a wonderful show. Thank you very much.

Secondly, the elementary school that my mother works at had a fundraiser where the children brought in a toonie and popped a balloon. It too was a success. A week earlier I had sent them a PowerPoint presentation of Parker so that they may show the children who my son was. The response was overwhelming. The children at my mother's school absolutely love her and felt so terrible for what little Parker has to go through. I would like to thank not only my mother, but her principal, all the teachers and children at Heather Heights.

I had mentioned before that there will be a benefit dinner on August 18th in Woodbridge. There is some information about the event on the right sidebar. There is now an email contact available if you are interested in obtaining tickets or purchasing a table for the event. I know that tickets will be going quickly so please inquire soon about purchasing tickets.

I would like to thank any new visitors who have come to the site recently. I know that we had a few people visit from todaysparent.com and I am very appreciate of them taking the time to visit.

Something A Little Easier on the Brain

Okay, I apologise for making everyone work today by having you read the article on the white blood cells from yesterday. Today, I promise to take it easy on everyone.

Parker went to get his enzyme injection today, in addition to getting some blood work done. Recall, that Parker gets his enzyme injections every Tuesday and Friday, gives blood on Tuesday and has Clinic on Friday. We were hoping when we got his numbers from his blood work it would show us that he was making his own IgG and would not have to get another infusion of them in the next week. Unfortunately, if Parker is making them, he is not making them fast enough and as a result his IgG level is down from last week. Parker will be getting an IV either Friday or next Tuesday to top up his IgG level. That would most likely be the last time he would have to get them.

The rest of Parker's numbers are generally unchanged from last week. They are all lower from last week but nothing to be concerned about. Next week they could be relatively unchanged again, but on the higher side.

Parker has continued to eat around 900 mL to 1000 mL of formula each day. We have come accustomed to that now, and do not expect anymore from him. Parker has moved to two cereal feeds each day. Barley, oats, or rice cereal are the three types he has. To be honest, I do not think he is too fond of the barley cereal. Whenever I try and feed him we generally just make a big mess. I have to make him laugh to get him to open his mouth for the food. When my wife does it, he opens up wide whenever she brings the spoon near his mouth. I decided to let him play with his spoon and bowl after a feed yesterday in hopes that he got more used to them.

A strange thing happened yesterday. Parker realised that he has fingers at the end of his hands. I mean it will stop everything he is doing to look at his hands and twiddle his fingers. We were at my parents yesterday and we brought Parker and his JollyJumper and while he was watching the backyardigans as he bounced up and down, he would stop every a few minutes to look at the back of his hands. He did it all day today as well. Then as we were putting him to bed he started to do the same thing with his feet too. Now that he has discovered his fingers he is holding objects much firmer now.

I can't end the article without mentioning how happy I am that Italy has made it to the finals in the World Cup. Parker and I were watched the second half together. Me while I worked in the kitchen and he as he sat in his Exersaucer. Parker's eyes were glued to the television. When Italy finally scored in extra time Parker was in his JollyJumper jumping away, when I yelled "He Scores!". Parker was so scared that he cried. I felt so terrible I ran to him and picked him up and gave him a big hug. A few seconds later he was jumping while Italy made it 2-0.

Thank you to everyone who visits Parker's site regularly. Please let your family and friends know of our site so that Parker may be a part of their lives too.

Time For Another Science Lesson

When we went to Clinic on Friday we were told that Parker had started making his own IgM. Ig stands for immunoglobulin and the M is a specific type of immunoglobulin. Parker receives IgG every six weeks or so to help his immune system. We are not sure if Parker has created his own IgG yet, since his complete blood count (CBC) shows that it decreases in numbers from week to week. Last week, it decreased less than it normally does, so there is the possibility that he may be creating his own IgG as well. We will not know this for sure until we go to clinic and they say that it is up from the previous week. If it is not up at his next CBC then he will get another high dose of IgG though an IV. I have been meaning to write a more educational article for a while, so I thought that this would be the perfect time.

Now, I know that most of what I talk about in my articles are about Parker's lymphocytes but these are only one portion of his immune system. That said, they are a very big portion of his immune system. But today, I thought I would I explain how the lymphocytes work with the rest of his immune system to fight infections.

Lymphoctyes
I shall begin by just reviewing a few terms that I most likely have mentioned in previous articles. I hope this makes the rest of the article a little easier to understand. Parker's disease has caused his body to be void of lymphocytes. Lymphocytes are composed of three types of cells, T-cells, B-cells, and Natural Killer (NK) cells. To further differentiate between these types of cells, the T-cells can be divided into three different types of T-lymphocytes. These being cytotoxic T-cells, Helper T-cells and Regulatory T-cells.

Below is a T-cell fighting a tumor cell.

The three types of T-cells are identified by the type of receptor they contain. Tc are incharge of destroying infected cells and contain the receptor CD8. TH are called helper T-cells and aid the rest of the immune system in fighting infection and contains the receptor CD4. This can be seen later in the article when I talk about how it works with the macrophages and the B-cells to produce antibodies to fight infection. Finally, regulatory T-cells aid in the supression of the immune system. These T-cells contain two receptors (surface proteins), CD4 and CD25. The receptors allow for specific cells to bind to them. The purpose of the Natural Killer cells are to contain viruses while the cytotoxic T-cells can clear the infection.

I have spent quite a bit of time in previous articles writing about the T-lymphocytes, but now I would like to talk abit about how the B-lymphocytes take part in an immune response. This is also where we will look at what an immunoglobulin really is.

There are usually millions of B-cells that circulate through the body at any given time. Once a B-cell encouters a particular antigen (something that produces an immune response - something foreign to the body), and a signal from a Helper T-cell it turns into one of two types of B-cells. The first is a Plasma B cell and the second is a Memory B-cell. Once a new antigen enters the body and comes in contact with a B cell, the B cell creates plasma cells. The purpose of the plasma cell is to create antibodies (immunoglobulins) that the antigens may bind to. Once bound, it becomes easier for specific cells called phagocytes to engulf the bad antigen. Memory B-cells are created for specific antigens and are meant for fighting antigens that the body has previously seen before. This is why when you catch something that is caused by something you have previously had your body already has cells that have seen it and are ready to fight. This allows you to get rid of what ever you have caught more readily. But what about the flu? See, the flu changes all the time and for that reason when the flu virus enters your body the following year it does so with a different shape. The Memory B-cells do not have the receptors that allow it to bind to the newly modified antigens of the flu virus. Thus, the B-cells must create new plasma cells that may in turn create an antibody with receptors that will allow it to bind.

Let's take a closer look at the antibody that the plasma cells create. I just mentioned that the word antibody can be used interchangably with immunoglobulins. So, when I talk about Parker's IgG and IgM I am talking about his antibodies.

An immunoglobulin (Ig) is a protein that is shaped like the letter Y. Each antibody is made of two Heavy Chains and two Light Chains. Think of the chains as a bunch of molecules linked together. At the two top ends of the Y, are located recepters, where the antigens may bind to. Once bound, it is an easy target for the phagocytes. I do not want to go to indepth with the different heavy and light chains, but I will say that there are five heavy chains. Depending on which type of heavy chain the antibody is made of will define the type of immunoglobulin. Therefore, there are five types of immunoglobulins. They are IgG, IgM, IgA, IgE, and IgD. The smallest of the immunoglobulins and the most prevelent in the body are the IgG. These are the only type that are smallest enough to pass through the placenta of a childs mother. For that reason, this is the only type of immunoglobulin that an infant has at birth. To be honest, I am not sure how many Parker had when he was born because the toxins in his body would have destroyed them quite quickly. A normal infant would be able to have them to fight off pathogens while there body was still learning how to make IgG. As I previously mentioned, I think Parker may actually be creating his own IgG now.

IgM are immunoglobulins in which five different immunoglobulins are bound together in the shape of a pentagon. By having five immunoglobulins there are ten binding sites for antigens and therefore has greater flexibility when performing an immune response. That said, we have all heard the saying that it is better to do one thing extremely well, then to do alot of things mediocre. IgG has a high affinity meaning it has a high binding strength of the antibody to the antigen. IgM has a high avidity meaning it has a high number of binding sites. IgM remains in the bloodstream where it can kill bacteria that enter the blood stream. IgG has the ability to enter tisse. It can coat the pathogens, helping other cells to seek and destroy them.

The purpose of IgE is to help the body with allergic reactions. When an allergen is ingested, inhaled or absorbed through the skin, it stimulates the production of an antibody called immunoglobulin E, or IgE.

The role of the other two types of immunoglobulins are not that well defined and for that reason I have decided to omit them here.

The lymphocytes are part of a broad form of cell called the white blood cells. The white blood cells consist of the three types of cells called lymphocytes, monocytes, and granulocytes. Now, I have already reviewed the different types of lymphocytes, but the granulocytes can also be broken down into different forms of cells.

Granulocytes
Granulocytes consist of neutrophils, basophils, and eosinophils. At one time Parker's neutrophil count was quite low (neutropenic) as a result of what we believe to be a medication he was on at the time. I have covered neutrophils in another article but I will refresh everyone with what its purpose is. Neutrophils fight bacterial infections by engulfing bacterium. Any form of cell that injests and destroys cells are refered to as phagoctyes and neutrophils are one form of phagocyte. Here is a link to a neutrophil seeking out a bacterium as it tries to rid it from the body. Whenever a large number of neutrophils are working and die they form pus. Basophils are responsible for releasing histamine whenever you have an allergic reaction. This causes inflammation. The eosiniphils main funtion is to fight infections in the body caused by parasites. Although, I have mentioned eosiniphils and basophils, with Parker our main concern are the neutrophils since he was neutropenic at one time.

Monocytes
Monocytes are another form of phagocyte (cell that engulf -"vacuum cleaner' - other cells) similar to the neutrophils. Monocytes are also known as macrophages, which I will refer to them as from now on. There are many places that you can find macrophages, they begin in the blood stream but can migrate to other tissue. The problem that Parker had with his lungs when we first entered the hospital (Pulmonary Alveolar Proteinosis - PAP) can be repaired by stimulating macrophages. PAP is caused by protein that has accumulated in the lung tissue. In a sense it causes it to become "dirty". By stimulating the production of alveloar macrophages the proteinosis can be repaired. Currently, Parker's proteinosis is not active. It is the reason that we brought Parker to the hospital originally as the need for oxygen, rapid breathing and loss of appetite that it caused mirrored the symptoms of many infections that may take place in the lungs. We are unsure why it is not active, as we never treated it. The intent was to stimulate macrophage production with a drug called GM-CSF (Granuloyte Macrophage Colony-Stimulating Factor). It is a protein secreted my macrophages that stimulates stem cells to produce granulocytes and macrophages.

Macrophages are similar to neutrophils but they do have some differences in function. First they last longer in the system than do neutrophils, but they also work with the Helper T-cell so that an antibody response may be activated. On the left is a monocyte and on the right are two neutrophils.

Here is an image from an electron microscope of a T-cell riding along a macrophages that has come in contact with a bacteria.

When the macrophage eats bacteria, antigens from the bacteria are then broken down and displayed on the macrophage. If that T-cell that is riding along with the macrophage sees a B-cell with the same antigen it tells the B-cell to create antibodies so that it may help fight infections. The antibodies bind to the bacteria allowing them to be more easily injested by the white blood cells. This can be illustrated below.



I know that is quite a bit of information for everyone to digest, like a phagocyte, but I have been looking forward to writing an article like this for a while. I hope that it helps a few people understand what is going on in their body. Let's just hope that Parker continues to produce the different immunoglobulins, that the three different types of T-cells start to increase, and he does not become neutropenic again.