Cool Rider

Last year for Christmas, before Parker was born, Nanna bought Parker a Winnie the Pooh that he could ride on for when he got older. While I was rummaging through the basement I noticed it amongst some of his other baby stuff. I figured that now would be a great time for us to introduce Parker to it. So, I brought it upstairs, cleaned it thoroughly and placed it in front of Parker. Parker was quite surprised to say the least, and when I placed him on it, held his little hands on the handle and then started walking behind him as we scooted across the upstairs Parker smiled.

Parker was unsure of where his hands and feet went, but after a little bit of practice he was quite good at staying on without falling off to one side. Today, when I put him on his Winnie the Pooh, I did not have to hold his hands or make sure his feet were in the right position. I just pushed Winnie from room to room with Parker holding on. Parker's balance was so good that at times he decided to only hold the handle with one hand. Not bad for only his second day of riding Pooh Bear.

Today, I had to move Parker's mattress to the lowest setting in his crib. Why? Well, Parker decided that since standing is so much better than sitting that we found him standing up in his crib during nap time. Every time we would put him down, he would grab hold of the rails and stand right back up. Of course this will not keep him from standing in his crib, but it will keep him from trying to jump over out of his crib.

Parker enjoys standing so much that he attempts to use anything and everything to get himself up. My son literally climbs up the wall. I did not know that infants could use the wall to get into a standing position, but I guess they can. The only thing is that Parker does not know what to do once he is standing against the wall all by himself.

Tomorrow we have clinic. We will meet with Parker's staff immunologist to hear how well Parker is doing. Parker had another flow cytometry test done on him earlier this week, so I am assuming the results will be ready for us tomorrow. What I am hoping for is that he gives us a date for Parker to come to Italy.
I have a good feeling that it will be tomorrow that we will find out, but I have always been an optimist.

So, tune in tomorrow... Same Bat-time, same Bat-channel to find out how Parker's clinic went.

Smart Monkey

It is just after eight in the morning, I finished giving Parker his Septra a few moments ago and he is now standing in his Exersaucer watching his mother do something he has never seen before. Cook. To be honest, I think the last time she cooked for me was when we were dating, so I am definitely looking forward to having the night off from cooking. Spaghetti and Sauce it will be tonight. When things happen this infrequently you know they have to be good.

I must say that there were quite a few hits to the older articles the past couple of days as a result of my last post. I had a feeling that people would read the odd one but we had a thousand hits on the Monday as a result of people looking back at some of the more relevant ones in Parker's battle. For that reason I decided to leave the article there for another day before writing a new one. I want to be able to design the new page so that it will incorporate something similar to the last article. I know I keep talking about the new page at scidada.com and some of you may be wondering when it is going to happen and the best I can say is after I write my Sun Certified Web Component Developers Exam at the end of December.

Parker has displayed some developmental milestones in the past few days. At least I depict them that way. The first of three would be he is now interested in climbing up onto anything. His new favourite is the sofa in the family room. It is right beside his play area and he loves to crawl all around there including to the sofa. I will be building a new area for Parker to play that will incorporate carpeted wooden blocks for practising his cruising. I will do it in the second bedroom upstairs that we have rearranged so that he is able to have a third play area in the house. We have decided to move one of his ABC mats to the new play area which will house his soon to be cruising apparatus.

Secondly, Parker is extremely interested in throwing and dropping his toys. Whenever he is standing or sitting in his high chair he loves to take everything he can get his hands on and whip them to the ground. I get a kick out of retrieving the toy very quickly and placing it back in front of him so that he can throw it again. There is this little frog that lives on his toy box upstairs and Parker is capable of tossing it a good couple of feet after he is angry enough that it keeps returning after being dropped on the floor.

Lastly, and the one I am the most pleased about is how he is interacting with his toys, impartiality two specific toys. Once again I returned Parker's wooden puzzle of shapes to his play area. In the past he was only interested in chewing on them or the occasional banging of them together. Last night and this morning when he had the opportunity to play with them he was more interested in banging them against the puzzle board in attempt to put them back into the slot the came from. The other toy that I have noticed some significant interaction with is his toy with the small blocks that are restrained by a wire. He has now decided that it is interesting to move the individual pieces on the wire instead of trying to knock over the toy or eat the wires. I am definitely very pleased with his progress.

Number Two Hundred

Yes. As the title says this is the 200th article I have written for this blog since I started it. It is hard to think that we have gone through this for as long as we have. It was last March when we found out exactly what was wrong with Parker and it has been quite the journey since. Parker has now been at home for pretty much as long as he was in the hospital and at the moment I think only of Parker as a healthy normal ten month old little boy. I know there will be a time in the close future that we will be spending quite a bit of time with Parker in the hospital in Italy, but I will leave the future in the future.

I had mentioned it a couple of weeks ago, that I wanted to have an article that incorporated past articles to act as a summary of everything that Parker has gone through so I figured that today would be a good day for that. This will be great for those of you who are new to the blog and can be a memory jerker for those of you who have been here from the beginning.

Happy readings.

Sunday, March 19th - The Very First Article
Monday, March 20th - Results of the Lung Biopsy
Wednesday, March 29th - Dad Researches Gene Therapy
Friday, March 31st - A Message from Dad to Mom - Voted best Article
Sunday, April 2nd - Parker is able to Wear his own Clothes Instead the Hospital Sleepers
Friday, April 7th - Our Meeting with the Doctors about Treatment Options
Saturday, April 8th - Parker Enters an Online Baby Photo Contest
Wednesday, April 12th - We Choose Gene Therapy in Italy as Treatment for Parker
Friday, April 28th - PEG-ADA has been Approved for use on Parker
Wednesday, May 3rd - Parker's Neutrophils have Disappeared
Thursday, May 4th - Parker Starts PEG-ADA
Friday, May 5th - Parker Wins Online Baby Contest
Monday, May 8th - PEG-ADA Starts to show Positive Results in Parker
Tuesday, May 9th - Parker is no Longer Neutropenic
Saturday, May 20th - Parker Makes the Front Page of the Toronto Star
Monday, May 22nd - Explanation of Parker's Recent Weight Gain Success - with graphs
Friday, June 2nd - Parker Comes Home
Friday, June 9th - Parker's First Clinic Day
Saturday, June 17th - Playing For Parker Fundraiser at the Rivoli
Monday, July 3rd - A Science Lesson about Severe Combine Immunodeficiency
Sunday, July 23rd - Parker Goes to the SCID Picnic - A Rare Day Out With Parker
Monday, August 14th -Parker Gets his IgG and Everyone Feels Bad
Saturday, August 19th - Benefit Dinner for Parker - Parker's Journey
Sunday, August 27th - A Look Back to Before the Blog - A Series of Emails to Friends
Tuesday, August 29th - PEG-ADA Working and Parker's Cell Counts are Up
Monday, September 25th - Parker's Cousins see Him
Friday, September 29th - Parker's Numbers Up Again
Sunday, October 1st - Parker Gets Baptized - Video AvailableWednesday, October 11th - Parker Starts to Crawl and Parker is on CityTV
Saturday, October 14th - Information about Italy
Friday, November 3rd - Parker's X-Rays Show that his Skeletal Abnormalities are Mild and Improving
Thursday, November 16th - Parker can get into a Standing Position without Help from Mom or Dad

Thank-you Parker's Pals

Parker, my wife and I just returned from our regular trip to Sick Kid's so that Parker can get his ADAGEN injection. He is currently watching BrainyBaby in the other room as my wife gives him his bottle. Parker was quite upset on the car ride home as the sun seemed to bother him quite a bit. One of the side effects of the Septra that he takes is a sensitivity to light. I am not sure if that had anything to do with it or if it would have made any baby cranky. After two-thirds of the way home, we decided to pull off the hi-way and have my wife sit in the back with the sad little guy. It was definitely quieter in the car; Parker's mom did a good job blocking the sun and keeping his mind off of being upset.

I am not sure how many of you watched the CityNews spot last night about Kiss the Pig and Parker's Pals, but I did and I was thoroughly impressed. CityNews, as always did an excellent job. The students looked like they had a lot of fun, and we are so appreciative of all the hard work that Parker's Pals did. I recorded the news as I do for all the media that Parker gets, but I currently do not have a link to it on my site. If you are interested in seeing it I am sure I will have a stream to it shortly. Thank you so much Pope John Paul II Catholic School and Parker's Pals. We are so appreciative of you.

I figured I should mention it here that Parker finally reached the 11 kilogram/24 pound mark today. We were a little surprised at how much he gained this week since he has been so active lately, but I guess with not gaining so much the past few weeks he was due for a larger gain. Parker weighed in today at 11.070 kg or for those of you who are not into the metric thing: 24 lbs 5.7 oz.

Continuing on the topic of Parker's energy as of late, I must say that we have seen some changes in his personality in the past week. Parker is full of energy and seems to want to move around, talk and stand up. He also has seemed to create a temper when he does not get what he wants. I know that all of this is normal, but where did my calm, well tempered son go? Not to say that he is a cranky little man, because he is not. His laugh is still very contagious and he still wants to spend quite a bit of time with us, but as someone had put it, Parker is exploring his independence.

I warned my parents yesterday that he is a very energetic little boy and wants to explore everything so they better be ready for it tomorrow. I am not still not sure what my wife and I are going to do tomorrow afternoon but we are happy that they are going to get to spend some time with Parker.

Pope John Paul II Pep Rally Today

I completed the lights on the garland on the top part of the railing and Parker is absolutely mesmerized by them. I put them on yesterday and when I took Parker up to change him I decided to put the lights on for him to see. With those lights and the ones from the Christmas Tree near by Parker was definitely in the Christmas Spirit.

It is so nice being able to spend so much time with my son. I know that most men do not get this opportunity, and although it is to make sure that I do not infect him with anything, I find it is a gift. I cannot believe how fast Parker is getting with his crawling. The little guy scoots around his play areas extremely quickly. Whenever he is in his room, he always crawls right over to his toy box so that he may stand up. I know that it is not going to be long before the chasing we are doing is not due to his crawling, but due to him running. Currently, I have been letting Parker hold my hands with his fingers so that he may walk toward different things in our house. Parker needs the support, but he definitely understands the left foot, right foot, left foot idea when it comes to walking. I know walking is still probably a couple of months away, but he does seem to be making some great progress with it.

Pope John Paul II Catholic school is holding a pep rally today, and have dedicated part of it to celebrating the work they did to help raise funds for him. I had mentioned in my last article that Parker and I made a video to thank the school for everything that they did for us. I was told that City TV is suppose to have a camera crew covering the event, so check out CIty TV tonight at 6p and 11p to see if it made the news.

Parker is getting a special visit from his Nonna and Nonno on Saturday. Parker has not seen them in close to a month since Nonno has been sick. Everyone is really excited for their visit. Parker because he loves his Nonno and Nonna, Nonno and Nonna because they love Parker, and Parker's mommy and daddy because they are looking forward to getting out for a few hours on Saturday while Nonno and Nonna watch him. And of course, because Parker's parents love to be able to have Nonna and Nonno spend time with their little monkey. Nonna and Nonno better be ready, Parker just began crawling the last time they saw him. He is so much faster now.

Working with a Monkey can be Hard

It feels like forever since the last time I wrote even though I seemed to have only missed one day. I have continued to be quite busy the past couple of days with getting ready for Christmas in addition to taking care of Parker. My wife has been suggesting to me (nice way of saying nagging) that I put the garland up on the railing going upstairs. So, I broke down yesterday and decided to do it. Parker and my wife sat at the top of the stairs while I tied the garland to the banister. It did not take too long to get it down since I have gotten some good practice lately putting up garland and lights. Parker was definitely quite excited to watch his dad walk up and down the stairs as he fought with the garland and the string so that one overshadowed the other.

Today being Tuesday, Parker had his enzyme injection at Sick Kid's in Toronto in addition to having his first of three consecutive days of Septra. For those of you who are not sure what either are I shall explain. Parker is currently at home awaiting treatment for gene therapy in Milan, Italy. To take part in the experimental treatment Parker receives twice weekly injections that supply him with the enzyme his body is unable to produce. Unfortunately, this form of treatment is only temporary and will not reconstruct his immune system for the long term. This is the reason we will be traveling to Italy for treatment.

Secondly, since Parker's immune system is still compromised he gets some help by taking a medication that combats the most severe form of pneumonia. Parker takes Septra three times a week for three consecutive days, beginning on Tuesday morning. Parker is not particularly enthusiastic about the medication and usually needs to watch the "Backyardigans" to take his mind off of the Septra. Since starting the enzyme replacement therapy and being on Septra, but mostly because of the environment that we control Parker has been free of illness.

Today, Parker, my wife and I worked on a video for Pope John Paul II Catholic School. Since they did some fundraising we wanted a way to say thank- you to the school community. Since us going to a school with Parker is out of the question, we did the next best thing. We created a video. I am not sure how many of you are in the film industry, or how many of you have ever had to work with a monkey, but shooting a video with my son Parker took quite a few takes. Thank goodness for video editing software.

Well, I better go and place the lights on the garland upstairs. I don't want Martha Stewart to be upset!

Christmas in November

I finished the Christmas Tree on the main floor a couple of days ago and my wife decorated it, so I figured I would continue with the Christmas theme and put my lights up outside. I figured that it would not take too long, then once I started I realised what I was like and decided to forfeit the rest of the day to finish them.

White lights with some garland, simple, but elegant. Of course, I had extra bulbs at the end of each string of lights I used so I removed the extra bulbs, tied up the extra cable and placed it in a ziplock bag so that the extra portion could be contained, hidden and free of snow and water. It is a little chilly tonight so I think I will pass on letting Parker see them until we have an evening where the climate is less formidable. It is nice to finally be able to put up all of the decorations that we bought for the house a couple of years ago.

My wife had her flu shot a week ago. I do not normally get flu shots for a couple reasons. The first, I hate needles and my pain threshold is quite low, but secondly I believe the best way to keep from getting sick is to stay away from sick people and regularly sanitize your hands. Two things that I always do. That said, I did ask the nurse that gives Parker his ADAGEN injection and she suggested that I get the flu shot. For that reason, and that reason only I have an appointment to get my flu shot on December 2nd.

Parker has continued to get faster and faster at crawling. He has become quite interested with his toy box in his room and except when he gets side-tracked as he attempts to gnaw on the top of it, he is very good at getting into his standing position. I figure that the best thing to do right now is to give him as many opportunities to work on that. Once he has mastered that, I am sure he will want to start cruising. Not, sure what he will cruise on, but again we will find something.

As most of you know, I spend quite a bit of time reading and studying computer programming. I have been studying to pass the Sun Certified Web Components Developer Exam for some time now, and plan on writing it after Christmas but before the new year. I say this because Parker is quite interested in the book that I am using to study for the exam. He enjoys it so much that I am quite worried that he is going to rip a few pages out of it. I guess that is what tape is for.

I had mentioned previously that Parker has a puzzle with shapes that he enjoys playing with. The puzzle is made of wood and has coloured paper glued to the pieces indicated what shape the piece is. The problem, although it occurs less frequently, is that Parker enjoys putting the pieces in his mouth. For that reason, we are currently looking for a similar puzzle with large pieces that is made of plastic for him. If anyone knows of one, please feel free to let me know how I can obtain one.

I have taken a break from cooking this evening. Parker's Nanna is making a stuffed capon (chicken) for dinner. I am really looking forward to it as nothing beats a home cooked meal that is cooked by someone else after you have been working all day.

A Griswold's Christmas

I have spent the past hour finishing the lights on the main tree in the family room. I don't like doing things half way and the Christmas Tree on the main floor is no different. Parker's Nanna and Grand-dad had given us their very large and beautiful Christmas Tree to us a couple of years ago and I want to make sure I do it justice. What does that mean? It means weaving in and out of every single branch throughout the whole tree. By the time I have finished the tree it should be the home of 1800 little white lights. My wife makes fun of me with my obsession for the perfect tree, but I don't hear her harping on me when I am on my hands and knees cleaning every speck of dirt behind the toilet. Funny thing is, I clean behind the toilet as often as I put lights on the Christmas Tree.

Now, for Parker. The little monkey is upstairs yelling at his mommy because she is trying to get him to take a nap now since he was unable to have his morning nap due to having to go to Sick Kids. It seems to have quieted down for the moment, as I heard her through the monitor singing to him as she holds him in the glider chair.

On Wednesday, I had reported to everyone that Parker was able to pull himself into a standing position by himself. Yesterday, we decided to continue working on this and Parker was repeatedly pulling himself up. We were all quite surprised and happy to see how quickly he was able to do it. Now that he knows how to, he is very confident and now does it with ease. Parker even crawled over to his toy box and tried to pull himself up without me sitting him beside it. As of yesterday he had not realised that he had to be in a sitting or kneeling position to help himself up. He was unsuccessful getting into a standing position from his hands and knees. I will make sure that he has several opportunities to work on that in the next few days.

We did decide to have Parker spend 15 to 20 minutes of his play time standing at his toy box playing with his work bench that sat on top of it. Parker has gotten really good at repositioning his feet whenever he decided to move his upper body while holding on to his toy box. Still, my wife and I are going to have to find a way for Parker to learn how to cruise as we do not have a lot of furniture that he is allowed to be around to cruise on.

Stand Up!

It is raining quite hard outside right now. I am not sure if it is the weather but my mind seems to be a little "mushy" this morning. I came into my office to do something but I completely forgot what it was. For that reason I figured that I would sit down and write today's article.

Let me start by saying that Parker has continued to sleep well at night. Yes, he does get up to move around but he always settles himself. He usually gets up crying within a couple of hours of going to bed, but I will normally go into to hold him in the glider chair until he has slept for at least 15 minutes in my arms. With his head resting on my shoulder and the sound of his daddy singing to him is usually enough to completely relax him and allow me to put him to bed.

I had mentioned yesterday that Parker was not that interested in clapping any more, but had almost been able to pull himself up to a standing position so that he may play with the toys on his toy box. I am happy to report that Parker is now able to get himself into a standing position without any assistance from anyone. On three occasions, Parker pulled himself up all by himself. Mommy and daddy were very pleased with his accomplishment. We are not sure how we are going to do it yet, but we need to make sure he has a lot of opportunity to practise this skill in addition to work on his cruising (walking while holding on to furniture). It needs to be done in a controlled environment and the only real one we have is his bedroom.. My wife and I will have to talk about trying to set something up in his room. For now, we will make sure that he practices standing and playing in a standing position whenever we are in his room with him.

Before I diverge on to a topic that is completely unrelated to Parker I must explain what the pictures of Parker are about. With the beautiful weather we had yesterday my wife decided to take Parker for a stroller ride around the neighbourhood. It was a little bit chilly so we had to bundle him up in his gloves and hat. He is definitely a little cutie in his Toronto Maple Leaf mittens.

I know that many of the people that know me know that I enjoy cooking quite a bit. It is definitely one of my outlets during these difficult times. I figured that I would share a Banana Bread recipe that I made yesterday with everyone. I had modified a basic Banana Bread recipe I had to include a few things that seemed to work very well. I included some fail safe notes on the recipe so that you can obtain the same results each time. If you are interested in it, you can grab it from here.

I think my mind is starting to clear up, I just remembered what it was I came to the computer for originally. I needed a recipe for chicken drumsticks that I have been thawing out for the past few days.

Ten Months Old

I figured that I should write today's article before I do anything else today. For that reason, I have sat myself down at the computer before making my coffee so that I can get it done.

First, I must say that the sleeping arrangements that we have made for Parker the past few days have worked out tremendously. Parker has slept through the night, or at least we have. I think I heard Parker once early this morning, but I let him work it out. It was probably a little play time. For me it was still sleepy time. We eventually got up with Parker at 6:30am to give him his bottle and change him. Once that was done, the three of us got up for the day. Parker is playing in the kitchen with his mother while he awaits his Septra from me in the next thirty minutes or so.

I had mentioned that we thought Parker would be clapping all by himself shortly. I am not sure if that is going to be the case. He has not been very interested in working on his clapping lately. He has been much more interested in crawling and chasing his balls around his room. Parker flicks his ball and then chases it, when he catches up to it he hits it again so he may chase it. I must say he is a very fast little guy.

Parker turned ten months today. We are hoping for a couple of major accomplishments before he reaches the age of one and before he has his treatment. We want to hear Parker use real words instead of all the garble he spits out (trust me there is a lot of garble), and we want to see him walking. Let me first touch on the talking. I am not sure if it is all the Brainy Baby that Parker watches, or if it is all the stimulation he gets from having two parents at home all the time, but Parker does a lot of baby talk. I think it may be inherited from his mother as she does not have a shortage of things to say at any given time. That said, Parker does have quite the vocabulary or consonants, vowels and sounds that he strings together. I would be very surprised if he was not saying more than mommy and daddy by two months from now.

Secondly, we are hoping that Parker is able to walk without support by the time he turns one. Yes, Parker is a solid boy and his weight-to-length ratio is a little off, but to be honest so is his dad's. Yes, his dad is not the skinniest man in the world, but even when he does look skinny his BMI still says that he is overweight. Maybe Parker has inherited his daddy's body type. I am mentioning all of this because to walk and stand you have to support your own body weight. This is the reason the skeletal survey was done. The doctors wanted to see if Parker had any abnormalities in his leg bones that would hinder him supporting his weight. There were not and for that reason we will not have to do anything special in order for Parker to begin walking.

However, you can rest assured that I will work with Parker so that he has the skills and strength to stand and walk on his own by the time he is a year old. I know that babies generally begin cruising by this age, but Parker does not have a lot of furniture to pick him self up on and cruise about on. Why? Because Parker is limited to where we let him roam in the house. That said, we do have a toy box in his room that we use to work with. Parker and I have been working on getting himself into a standing position all by himself using his toy box. Parker can go from a sitting position to a kneeling one when holding the box or anything else and can pull himself up if I pick my hand on one of his while he does the work of standing up. I may have to put a couple of other things in his room so that he is able to work on that more often.

Warm Sleepers = Better Sleepers

It is quarter after six and Parker will be going down for bed in the next fifteen minutes. My wife will grab the nine ounce bottle and Parker and his mommy will head upstairs. I have decided to continue talking about Parker's nighttime antics because yesterday I mentioned that Parker was being a little monkey during the night. After hearing Parker through the monitor on Saturday evening we got up to see him as usual. As always, he saw us sneak into his room and as a result would refuse to go to back to bed. We proceeded to pick him up after he saw us and give him a bottle after changing him so that he would go back to sleep.

The primary reason for going into his room was to make sure that Parker is covered. Parker is not a big fan of having a blanket on him when he sleeps (I think it is an inherited trait). As a result, he constantly kicks off his blanket. For the past couple of months we have monitored the temperature and humidity in Parker's room. The humidity is always in the mid 40s and the temperature is always 73 degrees Fahrenheit +/- 1 degree. It does not matter what it is like outside, we have been able to control the climate in his room. Regardless, we still want to make sure he is warm while he sleeps.

We were thinking that we would just buy him warmer sleepers. I have heard from others that confirmed this was a good idea. That way when he kicks his blankets off, and crawls on top of them, we can sleep knowing that he is not only comfortable but also warm. Last night, we tried it out. Parker once again got up on a couple of occasions throughout the night, played in his crib for twenty minutes or so, and then plunked himself back down and went to sleep. Yes, we did go in to check on him, but we did it when it was quiet and we were sure he was sleeping. That way, we could ensure he would not see us and he would not get all excited. Parker made it through the night without needing a bottle or a diaper change last night.

I apologise that there have not been alot of pictures the past few days. I will make sure to rectify that tomorrow.

Thank- you Air Canada and Lufthansa

So Linux has been running very well on my machine. I think my wife is actually starting to enjoy using it. I told her when I put it on that people who use Linux are geeks and she would be joining the club. I know this is off topic but if you are somewhat computer intelligent and you want a stable operating system with good security then I would look into Linux. My plug for the Linux operating system is over.

I have been meaning to mention the following for some time but always forgot when writing the article for the day. Air Canada with their Star Alliance partner Lufthansa have been kind enough to fly us to Milan, Italy. We are extremely appreciative of both airlines and cannot thank them enough. Although we are unaware of the actual date that we will be flying to Italy to take part in the study, Air Canada has been very flexible with us and we do not have to worry about the delay. This is such a relief for us and one less thing to worry about.

It seems as if Parker goes through stages where he sleeps better through the night than others. The last couple of nights I have gone into his room arond midnight because I heard stirring through the baby monitor. When I go in, I find him on top of the blankets, moving around slightly. As a result, I take the blanket and try and cover him. This usually gets him to roll over and then sit up. When I lie him back down and try and cover him, he just sits back up. Then, I pick him up. Moms reading this are probably saying, "Big Mistake". I sing to him, and then put him back in his bed. The result is one of two things. A sleeping baby or a baby yelling to be picked up. This wakes my wife, she comes in and I go down t get him a bottle so he falls back asleep.

At six this morning, we heard movement in his crib again. Being extremely tired, we ignored it. When we finally woke at seven and still heard him moving around we decided to get up to start our day. Nothing bad happened between six and seven this morning while he played by himself in his crib. We knew nothing would. When I heard him last night at midnight I knew he was fine as well. We just want him to be warm when he sleeps. I think today we will get him warmer pajamas to sleep in; just in case he kicks the blankets off again.

Applause

My apologies for not writing yesterday. I was quite busy, and to be honest, I thought my wife had written such a wonderful article that people would not mind reading again. I have just installed a new OS on this computer, SUSE Linux 10.1 so bear with me over the next few days as I try to iron out some of the wrinkles.

We had our trip to Sick Kid's today so that Parker could get his ADAGEN injection. Recall that ADAGEN is PEG-ADA and supplies Parker with the enzyme his body is unable to produce. His body needs a constant renewal of this enzyme as it does not stay in the body for very long. ADA (adenosine deaminase) is attached to polyethylene gycol (PEG) to increase the amount of time it is available to his body. As always, Parker was a very good boy for the injection. He cries while the fluid is being injected into his thigh, but smiles and laughs as soon as it is over and his mother is holding him again. The goal of the gene therapy is to modify some of his cells so that they can produce the enzyme on their own. As a result, he would have a constant supply of an unmodified version of adenosine deaminase (no PEG attached to it).

Although Martha Stewart would probably think it is wrong, my wife had me put up the Christmas Trees yesterday along with the rest of the holiday decorations. I have yet to put the lights or decorations on the trees yet, but at least they are up. I did this while I battled with Linux to install.

I have been planning on creating an article that includes some of the more important events during Parker's Battle with ADA deficiency. I hope to have it done for tomorrow, that way I can use it as my weekend article.

I just noticed, because of all of the noise while I write that my wife and Parker are sitting behind me while I write the article. Parker is definitely a much more vocal little man. I really think he is trying to have a conversation with us. I am not sure what language he is trying to communicate in but it does resemble English to a degree.

The past couple of months we have been working on getting Parker to master clapping. Until recently, his version was putting his hands together and banging them against his mouth. Just recently I noticed that he is finally pulling his hands away from each other and then bringing them back together. It seems like an early version of clapping to me. Now, I know I have made predictions before about Parker's development and although I don't always get it to the actual day he reaches the accomplishment I am willing to bet that Parker will have mastered clapping by his ten month birthday plus or minus two days. So that would mean no later than November 17th. Let's see if I am correct.

Life is Precious (A message by mom)

Each day I wake up and am thankful for many things. Having a sick child has taught me to appreciate life on a much greater level. Not knowing what the future holds is something I have learned not to take for granted. Before Parker, I thought that I had the "picture" perfect life. I had just married the man of my dreams on a beautiful island surrounded by people who love us. I had just moved into our house which very shortly after I learned would soon be a home to not only us but our precious little boy. I had a great job doing what I love most- teaching and I had a very supportive network of family and friends who I loved and I know loved me. I say this because like many others I never thought that in the blink of an eye my whole life could change and turn completely upside down. I will never forget the day that I found out about Parker's disease and the possible outcomes- it was the most devastating day of my life. All that I wanted to do was to take it all away. I would have given anything to put myself in his position and to let him lead a normal, healthy life. I think that must be the hardest part of being a parent- the helplessness we feel when there is nothing we can do to change an outcome for our child(s) or to take away their pain. In a heartbeat, I would have given everything up for Parker because all of a sudden my life was no longer "picture" perfect. All of the things I loved about my life suddenly looked different. Material things were no longer important and my house definitely did not feel like the home it was supposed to. Although, Parker had only spent a very short time in our house- the emptiness and loneliness were like no other.

The reason I am writing this article today is because yesterday we learned some devastating news about the death of a family member on my husband's side. It was this news that once again became a shocking awakening about how quickly one's life can change. No one has a guaranteed ticket to good health and fortune. Being around so many sick children for so many months has reinforced that. It is so tragic to wake up one day and within hours have your life change forever. Although I have a sick child whose future is uncertain, I always tell people that there is always someone who has it "worse". It is this death that reinforces that belief. I still have my precious baby to hold. Is our life ideal right now? Of course not. I look forward to the day when my son will be able to play with his cousins and friends, when my husband and I can return to work. However, ideal or not- these are the cards we have been dealt. I still have the luxury of having my sweet baby at home with me, unlike so many other people who experience a loss that is permanent.

I woke up this morning feeling the need to write. I have often found writing to be extremely therapeutic which is why I told my husband that I wanted to write today's message. Life is precious and it is because of this that I, too, must remember to always put things into perspective. There are things in life that we can change and then of course there are those things which we can't. I have learned not to question too many things about fate. I truly believe that things happen for a reason even if we cannot explain it at the time. We often think that perhaps Parker was diagnosed with this horrific disease so that he may be an integral part of finding a cure for it.

Our hearts and prayers go out to everyone who has experienced a loss and in particular to those in our family who are grieving at this time. We must find some strength in believing that for whatever reason John is now in a "better" place. We know that Parker has a very special angel watching over him.

Visit From a Friend

I am sure that most of you have read the article in the Toronto Star by now, if you have not you can check it out by clicking here. It was a nice article about Parker (AKA DesLauriers). I was hoping that our website would have been listed somewhere in the article so that more people can be aware of the disease, but regardless we were very happy with the article. Thank- you to the Toronto Star.

Parker had a trip to Sick Kid's today as he usually does. It was only to be a short visit to receive his ADAGEN injection; however, when we got there we were very pleased to see Parker's favourite doctor, Dr. Sean. Parker spent alot of time with him when he was in isolation and as a result you could always tell that Parker enjoyed when Dr. Sean visited him. Parker was always on his best behaviour for him and made a habit of showing off for him. Today we got to have a nice reunion with Dr. Sean and Parker got to show him all of the new things he has learned since leaving isolation. Remember, Parker was only about five months old when he left his isolation room.

I have decided to keep this article on the shorter side as I am not one to write for the sake of writing. With that, I wish everyone a good night.

Toronto Star Update on Tuesday

For the past two weeks I have gone to the computer early Tuesday morning to check the Toronto Star. The Star is doing an update article on Parker in the GTA section and it had been slated for the Tuesday paper. I did get confirmation this evening that Parker's article will be in tomorrow's paper. For those of you who are interested in reading the article you can check the paper online at www.thestar.ca

I had recently taken back something we had gotten for Parker several months ago and exchanged it for a new toy. If you have not figured it out yet, Parker enjoys playing with his plastic balls. He has always been very good at grasping them with his fingers and can even throw and roll them occasionally. With that in mind, I brought him home a toy that shoots balls in the air and then they land on a slide that twirls around until the balls return to the blower where they may shot up into the air again. Parker absolutely loves watching the balls shoot up into the air. He loves trying to catch them before they make their way down the slide. Now, at nine and a half months old he has not completely figured out how the contraption works and as a result finds himself getting hit by the same stream of air that is meant for the ball. I am not sure if he enjoys that too much and as a result I am pretty sure that the stream of air will act as a deterrent for his pulling the contraption over as he tries to remove the balls from it. Today we worked on putting the balls onto the slide instead of taking them off.

I had purchased Parker a puzzle of shapes a few weeks ago. The pieces were made of wood and had handles that allowed him to pick up the pieces. I figured it would be a great way for him to learn about shapes and how to put a puzzle together. However, all he wanted to do was take the pieces of the puzzle and shove them into his mouth. We started getting worried since the pieces were getting wet from his saliva and we found cleaning the wood very difficult. As a result, we removed the shape puzzle from his regular repatoire of toys. Actually, it was Parker's mother that removed it. Just in case Parker reads this ten years from now.

That said, when my wife was busy yesterday, I decided to reintroduce the puzzle to him. Yes, he put the pieces into his mouth occasionally, but he was much more interested in grabbing two pieces and banging them together. Every once in a while, Parker would even try and bang the puzzle piece against the board. I saw this as a developmental opportunity and decided to show him how the pieces went into the puzzle. Parker was not completely interested in what I was doing, but none-the-less, the puzzle has been returned to his mat as one of his favourite toys. Today, I saw him take two pieces, one in each hand and crawl off with them.
Unfortunately, Parker was playing in his room this morning and bumped his head on the beak of his little ducky stool. I don't hear the little monkey cry very often but he did shed a tear or two. Mommy was with him so by the time I got to his room where the crying was coming from, it had turned into very contagious laughter as mommy had baby Parker sitting in front of her across from the ducky. Apparently she and Parker were scolding the poor little duck. Bad Ducky, mommy shouted, Bad Ducky!

Last I checked, Parker is doing very well, and the ducky has quite the complex.
*Pictures are from Saturday.

Happy Birthday Nonno!

My wife and I just returned from my parents home where we celebrated my father's birthday. Now, I won't say which birthday he celebrated; however, it was a significant one. We are very lucky that Nanna and Grand-dad were kind enough to watch Parker. Now, I know that Parker does not see his Nonno nearly as often as Nonno would like, but Parker is a very lucky boy to have a grandfather like Nonno. I know it will not be long before we can put this all behind us and we can experience a life where we do not have to limit our time with family and friends.

I have a couple of things that I experienced in the past couple days that involved Parker, and I thought I would share them with you. First, I will go back to yesterday at Sick Kid's. The general routine on Fridays is that we drive into the underground parking and I get Parker ready to go upstairs for his injection as my wife goes to Shopper's Drug Mart to pick up his ADAGEN for his injection. We usually arrive at the immunology clinic at the same time, but yesterday she went to heat up a bottle for him because we were going to take a little longer. So, I went into the room in which Parker gets weighed and I proceeded to take off his clothes and weigh him. After weighing him (he gained 40 grams in the past week) I held his naked little body against my stomach and chest with one arm as I rummaged through his diaper bag with the other.

Now, I am sure that many of you are thinking to yourselves that you would never let a baby boy be naked for too long, and have already figured out what happened next. To be honest, I didn't feel anything at first, but very faintly I could hear a strange sound coming from below. It was not until then that I felt it. A steady stream of pee hitting my shirt just above my belly button. I was a little perplexed. I did not really know what to do. Did I turn him the other way and risk him urinating on the clean towels and scale or did I take it for the team and just let my shirt act as a sponge? I chose the latter. When Parker was done, I had quite a large and noticable spot on my shirt. It covered a majority of my shirt and unfortunately I did not bring another. I guess I learned my lesson.

The second story I have for you is much shorter and a lot less messy. Now, I know that I have mentioned before that I do stay up later then my wife in the evening and as a result I find myself checking in on Parker three or four times from ten until one in the morning. Last night, when I checked on Parker around midnight I noticed the little guy sitting up in his crib holding his blanket. He was oblivious to me and as a result he did not notice that I was watching him from the bathroom door. Very quietly I began to creep further into his room over to his crib. Then, just as I got above his crib, he looked up, caught a glimpse of me and abruptly fell over, closed his eyes and pretended to sleep. My wife had told me a week ago that he did the same thing to her, and I did not believe her. Now that I have witnessed it, I know that my son throws parties in his crib when we are not looking.

Happy Birthday Dad! We love you.

Skeletal X-Rays Results are Positive

It is two in the afternoon and we have been home from Sick Kid's for the past hour so I figured it was time to inform everyone how Parker's skeletal evaluation went. After Parker got his injection of the ADAGEN we sat down with the staff immunologist and the report from the radiologist to discuss Parker's results.

As most of you who populate this site know, ADA deficiency is considered the most severe form of Severe Combined Immunodeficiency for several reasons. First, it causes the greatest decrease in lymphocytes (T, B and NK), it does not respond well to conventional treatment for SCID (a bone marrow transplant), and finally it is not only an immunological disease but also a metabolic one. The toxins that accumulate in the body as a result of the missing adenosine deaminase (ADA) causes damage to the other organs. The most noted one is the skeletal system.

Since Parker is considered a large infant for his age above the 80th percentile for his weight, they wanted to make sure that he could bear the weight of his body on his legs. To find this out, they did a series of x-rays on Parker in order to perform a skeletal survey. A complete body x-ray that would be analyzed by a radiologist to check the severity of Parker's skeletal abnormalities.

The results of the skeletal survey showed that Parker has mild shortening and thickening of most of his limbs. In addition, he does have some mild abnormalities in his vertebrae and ribs. These are all considered somewhat normal for an ADA deficient child.

What is promising is that the x-rays taken on his chest and ribs back in February and March show worse skeletal abnormalities compared to what the x-rays now show. This would indicate that the enzyme replacement therapy that Parker is currently on to take part in the gene therapy trial is reversing some of the damage to his skeletal system.

In addition, the x-rays shows some thickening of the bronchial tubes in his lungs (peribronchial thickening). This is most likely caused by the infections Parker had in his lungs before he was diagnosed to have ADA deficient SCID.

Overall, we were very pleased with the results. In addition, as always, everyone at Sick Kid's is very pleased with Parker's progress to date.

The Great Escape

Parker is sound asleep upstairs as I begin to write today's article. Now, that the hustle and bustle of Halloween is over I figure I should mention some things that have been going on here the past couple of days.

Now, I know that there are probably quite a few moms out there who frequent the blog and I am sure that many of them have a similar experience with their child as I am about to share. I guess it was a few weeks ago that Parker started a strange new ritual every time he was put in his high-chair for a feeding. He would take his hands, place them on the tray in front of him and throw his body back repeatedly on the back of his high chair. When we first witnessed this we were quite shocked. We were worried that he was going to hurt his head banging it the way he was. Then, we noticed that he was laughing uncontrollably while he was doing it. So, of course, we thought we were bringing up some deranged child who likes to bang his head against things while he laughs. Today, while reading one of her books, my wife found out that this is apparently a developmental milestone that many infants go through starting at around nine months of age. That said, I guess my son is gifted, as he started banging his head at about eight and a half months. Regardless, I hope he stops this little attention getter soon.

Now that we are on the topic of feeding, I shall continue by saying that we have noticed that Parker does not have the same appetite that he once had. Of course, my wife had been quite stressed about this the past few days as she feels that how much Parker eats is indicative of how he is feeling. When Parker first took ill, we had an extremely hard time getting him to have his bottle.

Now, Parker still has quite a bit to eat and drink each day, but it is less than he was eating a few weeks ago. Luckily for me, my wife read, in the same book I might add, that babies appetites eventually decrease as they get older. This makes sense as Parker cannot continue to gain weight at the rate in which he was in the first six months of his life or even the time since then. If he did, our son would be a very big little boy a few months from now.

Continuing on with the theme of food, Parker's diet has recently changed to include some food that is more indicative of what we as adults would eat. Parker has recently begun eating toast with butter, and last night for supper Parker had baby sized pasta. He was a little reluctant to eat the pasta at first, but once he realized they consisted of tiny things that he could chew he eventually had a few spoonfuls. The toast on the other hand was not a problem. He could eat that all day. He loves taking the little pieces and putting them in his mouth. The little squares of toast must feel very nice on his gums and teeth because he ate almost a whole piece for lunch today.

Now to a new topic. When Parker first got sick we spent over two weeks at Centenary Hospital in Scarborough. Eventually we left to come home with Parker before going to Sick Kids a few days later; however, when we were at Centenary there was a very wonderful Nurse named Debbie. She spent quite a bit of time comforting not only Parker, but also my wife. We were very happy to hear from her recently and very surprised to hear that the pediatrics floor had done a "Pennies for Parker" fundraiser. We are so thankful to everyone on the seventh floor at Centenary for doing this for us. I know I have said it before, but I cannot say it enough, we are so thankful for all the support we have gotten from not only family and friends, but people that we have never even met. There are so many wonderful people in the world that have helped us in our battle against ADA deficiency. Thank you.