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.

Happy Halloween 2

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

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

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

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

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

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

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

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

Happy Halloween

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

Christmas Already?

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

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

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

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

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

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

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

Halloween is Coming

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

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

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


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

Twenty Three Pounds

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

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

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

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

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

Parker's Pals

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

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

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

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

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

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

Nighttime Pictures -- Updated

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

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

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

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

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