Friday, September 29, 2006

Good Day At Clinic!

It being Friday, we had to head down to Sick Kid's to get his ADAGEN injection. In addition, Parker also got seen by the occupational therapist and the staff immunologist. I guess I should begin with his little meeting with his therapist.

It had been quite some time since the last time she saw Parker so she was definitely pleased to see him. Parker definitely put on a show for her. He showed her how he can sit, roll over, turn his body around to get at something while on his stomach, get up on all fours and rock back and forth. He also displayed his fine motor skills by using his finger and thumb to grab at things he wanted that were small. When daddy told him to get up on all fours, he did right away and then started saying "Dada". He laughed and smiled and when held in an upright position at the knees he was able to hold himself up using his core muscles. When he bent over at the waist, he made sure to get himself vertical all by himself. One of the main reasons for having the occupational therapist see Parker was to get some advice on getting him in to a sitting position from his tummy. As we all know, Parker is not a small little monkey, but when she supported his hips while he was on his side, he had no problem getting to a sitting position. She also assured us that Parker is trying to getting in a sitting position while he is on his tummy all by himself and should be there shortly. As for his crawling? What I have been working on with him in his room is exactly what I should be. I am definitely a proud father.

Next, we received Parker's T-cell marker test results today. This is the test that lets us know if Parker is capable of maturing T-cells in the thymus gland when the toxins have been removed. The results from August 23rd indicated that they were up dramatically from June 6th. Today's results were even higher. Below is a table that shows his results from the three different dates.
Parker's last three t-cell marker test results
DateHelper T CellsSuppressor T Cells
June 6th12113
August 23rd592232
September 26th685302

Lastly, Parker also got a visit from the staff immunologist. He was pleased to see Parker and thought in the three days since he last saw him that he looked even better. That said, he was concerned about Parker's length. According to the length measurement that was taken today (70 cm) we were told that Parker was at the 25th percentile for his length compared to being at the 75th percentile for his weight. As I previously mentioned, the apparatus that we use to measure his length is quite crude. The last three times we have taken his length it was 71.5 cm, 69 cm, and 70 cm in that order in a span of one month. In addition, the chart that I use to record Parker's length has revealed that he is at the 37th percentile for length if he is 70 cm, and at the 68th percentile for his length if he is at 72 cm. Quite the difference a couple of centimeters can make. Regardless, Parker will be having an x-ray done in the upcoming week to see if there are any problems with his skeletal system, a side effect of ADA deficiency.

Wednesday, September 27, 2006

Finally: New Videos

It has been a long time since I sat my backside down at the computer and opened up Limewire and Microsoft Movie Maker to put together a video of Parker for everyone to see. Yesterday, I had taken some video of Parker as we played together with his Winnie the Pooh bear. Parker and I do play quite a bit so I thought it would be fun to make a video of him playing with one of his newest friends. There are two very different videos now available on the right side bar that you may download. They are a little larger and the quality is much better than previous ones so they will take a little longer to download. I have started placing some of my files on my web server that is tied to that I purchased. On a side note I have not yet decided what I will change Parker's website to. It will be either or I might have to ask everyone here what they think.

Wow, that was quite a tangent. As I was saying, there are two videos. One is titled "Friends Forever" and the other is "Later That Day". Please check them out. If pictures are worth a thousand words, videos must be worth a million!

I wish I had more to say today, but to be honest, I don't. So instead of having you read too much more, please go check out the newest videos of Parker instead.

Tuesday, September 26, 2006

A Little Less Anxious

It seems like quite a while since I wrote even though I posted a message yesterday morning. I guess a lot has happened in the past thirty-six hours when I last sat down to write an article. Today being Tuesday, it meant two things for Parker. First, he had to take his Septra this morning. To be honest, in the past this has generally been one of the harder things to do. Parker does not like getting his Septra and up to just recently it had to be given quite slowly so he did not gag on the pink gooey liquid. Parker usually dodges the syringe as he uses his arms to swat it away, or even worse, try and grab it from me. Last week I started to notice that Parker was fighting his medication less making it easier for me to give to him. Today, he pretty much let me do it without putting up much of a fight at all. Let's hope that tomorrow brings the same.

Secondly, Parker also had his trip to Sick Kid's to get his ADAGEN injection. On Tuesdays, Parker used to give blood so that we could check his numbers by doing a CBC (Complete Blood Count). Since Parker has been doing so well, they decided that blood only needed to be done once a month. Unfortunately for Parker, today was that day. Parker gave blood for his CBC as well as enough blood to do another marker test using flow cytometry. The last time he had the marker test done it showed that he was producing the cells that he was unable to since being born. Repeating the test a month later should yield results that are similar to the last test.

In addition to giving blood and receiving his ADAGEN injection, we were pleasantly surprised to get a visit from our staff immunologist. We have been very anxious about when we would be going to Italy as we want it to be sooner rather than later because Parker has been extremely healthy. In addition, we do not want Parker to remember too much about the procedure. Although, we were not given any dates, we were happy to hear that everyone is extremely pleased at how well Parker is doing and that it is still everyone's intention that Parker participate in the study in Italy. To be honest, that small conversation that we had today removed a lot of anxiety from both my wife and I. We can now just continue to focus on Parker getting strong and developing normally.

Parker sees his occupational therapist on Friday during clinic and we are excited to show her how much Parker is capable of doing. I still remember when she came to visit Parker for the first time back when he was in isolation. My wife told me that when she first came to the anteroom she had mentioned to her that she would come in to assess Parker and let us know what we can do to help him. She had expected our son to be a little behind developmentally after spending most of his life sick and in the hospital. As most of you know, I have worked with Parker right from the beginning, even when he was sick so that he would be a strong little boy. My son was doing 'tummy time' with an IV in his foot at five weeks of age. That said, she was very surprised that he was developing normally. We look forward to seeing Parker's therapist on Friday to show her how well Parker has continued to develop since coming home.

Since coming home we have continued to work with Parker to ensure that he is developing at least at what is expected to be normal for his age. When we found out that Parker had an ADA deficiency and that one of the side-effects was some possible neurological problems it made us want to work even harder with him. What do we do? Well, we read to him, we interact with him, we talk to him, he gets quite a bit of time playing on his mat with his toys, and he gets time to move around his room a couple hours each day as well.

I know that many parents are completely against their infants watching television. However, to be honest, watching educational television is an integral part in Parker's development. Recently, we discovered a set of DVDs by a company in the United States called Brainy Baby. They are similar to Baby Einstein but to be honest, I like them much better. Parker watches the same DVD each day as he sits on his mat in front of the television with either myself or my wife nearby. The current DVD is supposed to promote logical thinking as it shows little children interacting with toys similar to what Parker has in his room. Parker is unable to interact with other children. He does not get to see them playing with toys so being able to see it on television is extremely educational for him. As Parker watches the show, we reiterate to him what is going on by counting with the show, or restating what each object is. Of course, Parker cannot count, he does not know the alphabet, nor can he tell me what a balloon or dog is but I find it hard to believe that he is not benefiting by seeing or hearing the words while he watches the objects on the screen. If you are interested in an excellent alternative to Baby Einstein check out Brainy Baby.

My wife and I recently found out about a fundraising event that is occurring at one of my wife's friend's school in which she teaches. Summit Heights is doing a "Pennies for Parker" fundraiser throughout the month of October. Each Friday people place pennies into a jar for our little guy. We are very thankful of Summit Heights for doing this.

My wife and I are extremely amazed at how so many people have come together to make it easier for us to help in our battle against Parker's disease. If you are doing an event and would like me to write about it in Parker's blog, please let us know about it. We are so appreciative of everyone and we want Parker to know one day how many people were supporting him.

CityTV called me today and they are planning on doing a story on Parker in the upcoming week which will focus on Parker, his disease and the pub night that is being put on by Pope John Paul II alumni. As soon as I know when the spot is going to air I promise to let everyone know.

Monday, September 25, 2006

A Picture is Worth A Thousand Words

Parker has three cousins, two aunts and two uncles on my side of the family. At just over eight months of age, he had yet to meet his cousins and since his first week of life he had never been held by his aunts nor his uncles.

Before Parker was born, every Sunday evening my whole family would congregate at my parents home where my mother would make enough food to feed an army of the hungriest soldiers. During a very busy week, it was the only time that we could guarantee that we would all get to spend some quality time together. My sister and brother would bring over their children and we would all eat and discuss everything that had been happening in our lives over the past week.

Since Parker was diagnosed with this disease our visits to my parents on Sunday evenings have been extremely infrequent and to an extent non-existent. When we do go, our visits are short and our contact with our nephews consist of us talking to them from several feet away. When we do attend a family gathering, we unfortunately have to leave our son at home with his Nana and Granddad so that he remain in a controlled germ-free environment.

Yesterday, we decided to drop by the weekly gathering at my parents home with Parker to grab some food for ourselves that we may take home to eat. When we arrived, I quickly made my way into the house to get food for the two of us as my wife and my son stayed inside the car. When I informed my family that their nephew was in the car, they gathered up Parker's cousins and went outside to see him. When I finished getting our dinner, I went outside to witness the following. Parker's cousins were crawling over our car so that they could get a better view of my son through one of the windows. As I stood there on the veranda watching my family interact with my son in this manner I was reminded of what is truly important in life.

Sunday, September 24, 2006

Ride For Parker

We headed down to Bramalea yesterday morning to watch all of the cyclists take off for their very long ride. I have to say that my wife and I were extremely touched by all the people who came out to either ride or help out. Although we arrived there just prior to 9am to see the start of the 50km portion of Ride for Parker, an hour and a half earlier three riders began the 100km portion of the ride. To be honest, I could never see myself being able to ride a bicycle for 50 km but the people at the Bramalea United Church did.

I know that we have said it before but my wife and I are so touched by all of the family, friends and people we don't even know who go out of their way to help in Parker's battle. It is these same people that allow us to draw strength from them so that we may stay stay strong in this long journey. Thank- you so much.

I had mentioned in my last post that I would be putting some more video up of Parker in the next day or so. Yesterday, I did do some video of the little monkey bouncing in his Jumper and I must say that there is quite a difference in the way he jumps now and the way he did when he first got the jumper. The little guy pushes off with all his might and then not even a second later his feet come crashing to the ground with a giant BOOM! The video should be ready by this evening, so if you would like to see it come back later tonight and check it out.

Parker has done an excellent job the past few nights going to bed at his new time of 7:30p and then pretty much sleeping through the night. We are very proud of our little boy. He does wake up at around 6:30am for a bottle and a diaper change and depending on how he is feeling, he either heads back to bed or requests that we play instead. This morning, Parker and daddy played in his room until just after eight when I decided to bring the little monkey downstairs to play in his Exersaucer while I write today's article.

My wife has been extremely tired the past few days. She goes 100% through the whole day. If she is not feeding the little monkey she is cleaning the house and except for Y&R in which she watches when Parker falls asleep she really does not have much down time. No one worries more about the environment that Parker lives in more than her. Yes, I do my job here making sure that the house is clean and Parker remains free of infection, but Parker's mom has always been the one to make sure he is safe. I definitely worry about her getting run down and as a result getting sick. I know that I tell her all the time to relax a little but she has a very hard time doing that. Maybe reading it here may help her. She did sleep in this morning, so that is at least a start. Take care of yourself Mama Monkey.

Friday, September 22, 2006

Lack of Control

Every once in a while I feel like I have to vent and today is one of those days. Every few days I have someone ask me when we are going to Italy for Parker's treatment and for the most part I have told them it would be near the end of November. You see, on November 2nd Parker will have been on ADAGEN for six months. One of the requirements for taking part in the Italian study is that you must be on enzyme replacement therapy for six months. That said, we really do not know the exact date we are leaving for Italy. See, being part of a research project leaves much of the control outside of our scope. So, although we would like to be in Italy as soon as possible, an actual date has yet to be set.

Are we going? Of course. When? No one wishes they knew the answer to that question more than my wife and I. Don't get me wrong, I am not upset that people ask me when we are going. I would expect people to. It is the lack of control and not knowing when we are leaving is what I have difficulty with. That said, we will be patient and continue to do what we have been doing. That being making sure Parker is healthy and developing at least at age.

On a much lighter note, Parker had his ADAGEN injection today at Sick Kid's. The amount of PEG-ADA had to be increased to 1.2 mL since he has continued to gain weight at a steady pace. Parker weighed 9.70 kg or 21 lbs 4.5 ounces today. It should not be too long before he reaches the 10 kg mark which is equivalent to 22 pounds.

For those of you who have noticed that I have changed Parker's weekly poll great. For those of you who haven't check it out now. I am going to use the poll the next few weeks to get some information about the demographics of the people populating this site.

Tomorrow my wife and I are heading down to Brampton for a fundraiser that some friends are putting on through their church. Riding for Parker, a 100 km bicycle race is happening tomorrow morning. So, check back tomorrow to check out how it went.

Thursday, September 21, 2006

Leap Frog

So, Parker and I have continued to spend time working on getting Parker to move around his room. As I mentioned in an earlier post, for now he pretty much rolls wherever he has to go. That said, he does move to his hands and knees quite regular as he rocks back and fourth as he tries to find a way to move himself in the positive direction. For the most part Parker finds himself doing the exact opposite. As he rocks back and forth he eventually overcomes the static coefficient of friction (there is my physics degree coming through) and finds himself moving backwards. That said, in the past day I have noticed Parker creating a larger enough force in the positive direction by pushing forwards with his knees and legs that he actually jetisons himself over his hands just like you would see a frog do. At least Parker now knows what it feels like to go forwards.

It being Thursday, Parker received the last of three Septra intakes for the week. Recall, that Parker receives 3.8 mL of Septra on Tuesday, Wednesday and Thursday mornings for precautionary reasons. Septra combats PCP pneumonia, one of the worst forms of pneumonia. There are other medications that do the same things but Septra is the most effective. Before Parker started receiving his ADAGEN injections, Parker was neutropenic. This may have been attributed to the Septra and for that reason he was taken off of Septra and placed on a different medication. Once the injections were started and Parker's neutrophils returned Parker was once again placed on Septra. Although we were a little worried about Parker becoming neutropenic again, it was decided that Parker's neutrophils would be closely monitored to see if they were affected by the Septra. With Parker going home in the next few days we wanted to make sure that he had the greatest chance of staying healthy prior to going to Italy. That said, being neutropenic would exclude Parker from participating in the gene therapy trial in Italy.

I have been contemplating creating another video of Parker for the website. I have been quite bad about staying up-to-date with that section of the page. I don't like making excuses for why I don't do things, so I will definitely not bore you with any. I can guarantee everyone that you can expect a couple of new videos in the next few days. I have the video with Parker crawling over the pillow that I made over a month ago and never placed on the website, and I was thinking of making a couple more with Parker in his Jolly Jumper and moving around his room. So, stay tuned and watch for these in the next few days.

Tuesday, September 19, 2006

Story Time

I have always heard that reading to your baby is a great idea even if they do not understand what you are reading to them. It was something about them understanding how a story sounds. What a question sounds like, how you pause in the middle of a sentence and how your voice changes. Well, the past few days I have decided to read to my little guy as he rocks and rolls around his room. What do I read, you might ask? Well, computer books of course. I figure that if I am redesigning Parker's website I should at least do it with the newest technologies available. So, as Parker moves around his room he listens to the sounds of his father reading that famous fairy tale about Asynchronous Javascript and XML. I have to say that Parker really enjoyed his last story about Cascading Style Sheets and XHTML. Reading out loud is also a great way to learn, so if you haven't tried it, grab the closest eight month old, some textbook you need to get through and start reading.

Parker has really started to move around his room with some speed and agility. Maybe I see an athlete coming on. I know the Toronto Maple Leafs could use a few, for that matter so could the Blue Jays. Parker almost rolled right under his crib. He probably would have if I had not looked up from my book for a moment to see his legs under the crib as he tried to pull at the bed skirt hanging down from his mattress. Of course, I stopped the story, at the best part I might add, so I could move Parker back to the middle of the room.

I had mentioned that Parker was having some difficulty getting to sleep as of late. It was suggested that maybe he was being overstimulated before bed. Parker normally jumps in his Exersaucer to the Wiggles from 7:15p to 8:00p. We have recently moved his jumping time to 6:15p as we let him jump for forty-five minutes and then it is a half of an hour of crawling and playing with his toys as his daddy reads to him in his room. At 7:30 mommy comes by with a bottle and a not so intelligent story to be read before his feed. Does this work any better? Well, it is now 8:15pm and Parker seems to be asleep already. I guess it is working.

Parker had his enzyme injection today, as he normally would on Tuesdays. The difference today has to be the fact that our son is starting to become a lot more vocal with us and his toys. Not just yelling, but he is stringing together multiple sounds like ba, ma, da and ah. I am not really sure what he is saying but it is definitely nice to have him say something other than "Ahhhh!". Tonight, in his JollyJumper, I think he had a conversation with his toy lobster!

Monday, September 18, 2006

Spanish Anyone?

As usual, I have a few things that I am going to share with everyone. First, I want to thank everyone who either called me or e-mailed me about the Dentyne Ice commercial last night. Apparently, it was on Global during Family Guy last night. It definitely made it easier when we spoke with Cadbury today. The commercial was to be pulled from television no more than two weeks from when we spoke with them. That would have meant the last time we would have to worry about this terrible commercial would have been the Friday that just passed. When the woman at Cadbury spoke with us today she was surprised that the commercial was still being aired on Global. After speaking with her for a second time today, we were informed that the commercial would not be on television after today and she would definitely be watching to make sure that it isn't. As I mentioned yesterday, if anyone does see the commercial, please let me know as my wife and I do not watch television very often since Parker was diagnosed.

On a lighter note, Parker and his daddy have been working on his crawling, as well as getting into a crawling position from sitting and vice-versa. I am not completely positive of what Parker is trying to do, but I think he is attempting to get to a crawling (tummy) position by rocking over his feet. That would mean by crawling over his feet. I have been placing Parkers hands to the side so that he gets used to having to hold himself up from this position. By doing this, I think it should help him in both going from sitting to crawling and from his stomach to a sitting position.

Once on his stomach, Parker has started to learn that he must alternate moving his left arm forward with his right arm to crawl. We are starting to accomplish this by me alternating moving his legs behind him in a crawling motion. Today, he actually started moving his arms and hands correctly. I am sure after a few days he should get much better at this motion. Now, I am not sure how much Parker enjoys doing his exercises with his dad, but he definitely yelled "MaMa" very loudly while I was pushing his legs from behind. My wife was quite pleased, and so was I, but I am not sure if he knows the difference between "Mama" and "Baba". Regardless, it was nice to hear.

Lastly, I guess I should touch on the title a little bit. My nephew Jacob, who just had his first birthday a couple weeks a go really enjoys the baby food by Heinz that contains real pieces of rice and whole peas in it. It is geared for eight month old infants and above. Now that Parker is finally eight months old we decided to let him try some chicken paella, a Spanish classic. I tried it first thinking it would be a nice change from the other foods he eats. Very bland. The big question is, how did he like it? To be honest, I have never seen Parker display such a look of disgust in my life. That said, Parker and daddy carried on with the feeding. He was no more pleased with the last bite of the chicken paella than he was the first. That said, I have a philosophy about new foods. I always try something three times before I decide I don't like something. To be honest, the first time I had sushi I was mortified by the taste and texture. But by the third time I was really enjoying it. Now, I love it. I have yet to find something that by the third time I have tried it I do not enjoy it. With that, Parker can expect some more chicken paella tomorrow for lunch!

Sunday, September 17, 2006

Fun at Rama

Yesterday my Aunt and Uncle (who happen to be my God Parents) and 53 others hopped on a bus that they rented and made their way to Casino Rama. My Uncle Benny and Aunt Carol with the help of my cousin Jennifer had been planning a fundraiser titled RamaRun for some time now. On the bus ride there they showed a video of Parker so that everyone could see my little boy. After speaking with my mother this morning, she informed me that everyone had a wonderful time and the event was a definite success. My wife and I are extremely thankful to my Aunt, Uncle and cousin for organizing such a wonderful event for Parker.

There are a couple more fundraisers that are taking place in the next few weeks. One, is Pub Night that is being put on my the High School that I attended, Pope John Paul II and the other is a 100km/50km bicycle trip in Brampton by two friends of mine with the help of their church and many of their friends. Information for both the Pub Night and the bicycle run can be obtained on the right side bar. We would love for as many people to take part in both. We are extremely appreciative of everything that everyone has done for us. The love and strength that we pull from our family and friends plays a vital roll in our ability to stay strong through this very difficult time.

I received a phone call from my brother and his wife last night and they informed us that they did indeed see the Dentyne Ice - Bubble Boy add on television last night. We were promised that this commercial was going to be pulled from Canadian television by Friday. We will definitely be calling our contact at Cadbury on Monday morning. Depending on how that goes the theme of our CityTV segment may change to reflect our feelings about a commercial that mocks and degrades our son's disease.

On a much lighter and happier note, I thought I would tell everyone that we have chose a date for Parker to get baptized. Yes, we are Catholic and have chosen our son's faith until a time that he is able to do so himself. On October 1st, at my parents home and in their backyard we will have Parker baptized as a member of the Catholic church. A priest at my home Parish has agreed to come to my Parents to baptize Parker in front of close family and away from other children and people that we do not know. We have chosen Parker's God Parents and had them over for dinner last night so that they may see their future God Child. My cousin Kyle and his wife Josephine were overjoyed at the news that they would have Parker as their God Son and have really understood the importance of this roll. We have decided with Josephine and Kyle that they would give Parker an additional middle name as a part of the baptism ceremony. Parker Joseph DesLauriers will soon have another middle name to reflect his Catholic faith.

Thursday, September 14, 2006

Mobile Monkey

As I had mentioned very briefly in my last post CityTV have moved Parker's spot to another time next week. The reason is quite obvious, they need to focus on the shootings in Montreal. Thinking about it, I think having it next week actually works better. Why? Well, they shot the footage today at the hospital, I gave them Parker's web page to look over as well as some high quality images that they may use as well as some information about an upcoming fundraiser that my friends from my old high school (Pope John Paul II) are doing. So, when they do do the story, it should be a very good one. In addition, tomorrow will be the two weeks that Cadbury said it should take for the Bubble Boy commercial for Dentyne Ice to come off the air. We saw the commercial yesterday so we know that it is still out there. If we here that it has been on past the two weeks they told us, then I am pretty sure that CityTV would be thrilled to do a story on that instead. So, if you do see it over the weekend, please let us know.

Parker has decided to take an interest in rolling as well as getting up on all fours and rocking back and forth. I know that the latter is a prelude to crawling so I figured that I should give Parker the same opportunities that other infants his age have. Up until recently we have confined Parker to his "ABC mat" in his room. Yes, we vacuum his carpet each day, but we do walk on it whenever we enter his room. With that, we have decided to purchase slippers that are meant only for his room. Anyone that enters his room now puts on a pair of one of the four pairs of slippers that are outside his door. Now, that we are not afraid of him being on the carpet, Parker is free to roam around his room. Whether it be by rolling, or dragging himself Parker is now a mobile monkey.

We also purchased an "ABC mat" for the main floor in the family room. This way he may sit on the ground and play with his toys when we are not upstairs in his room. We do spend quite a bit of time in the kitchen or in the family room so being able to let him sit and roll downstairs is a nice change. We are pretty sure that Parker will be starting to crawl in the next couple of weeks and are definitely looking forward to that new challenge.

Lastly, we picked up a new video for Parker to watch. Yes, Parker watches television. I am not one of those parents that think television is taboo for their infant. Anything in moderation is okay and I am the one who gets to choose what he watches so no worries there. The video we purchased is from a series called BrainyBaby. It is similar to Baby Einstein but to be honest, I seem to like this series a little better. The specific video is called Left Brain and is suppose to inspire Logical thinking. As I mentioned, the series is very similar to Baby Einstein but it does give us parents some choice. So, check out their website to see what they have to offer.

CityTV Update

I just spoke with City and because of the shootings in Montreal yesterday the CityTV anchors have gone to Montreal to cover that story. As a result, they will be taking video of Parker today at Sick Kid's in Toronto and then be interviewing us in the next few days for next week. I will post another message later today to let everyone know how the video shoot went today.

Tuesday, September 12, 2006

Parker to be on CityTV

As the title says, Parker should be on the six o'clock news this coming Thursday. CityTV had contacted me a couple of weeks ago in regards to promoting a fundraising event that my Uncle and Aunt are putting on for Parker. They called me today and asked if it was okay that Anne Mroczkowski interview us on Thursday before we get Parker's ADAGEN injection. We have a wedding to attend on the Friday and for that reason Parker is going to receive his enzyme injection on Thursday afternoon instead of Friday morning. The RamaRun event that is being put on this weekend is fully booked but they were still very interested in doing a story on our son. We have already been on CityTV twice, but never on a weekday during primetime. We are definitely pleased about being able to let more people know about Severe Combined Immunodeficiency and the work that is being done with gene therapy.

I had mentioned yesterday that we were having some difficulty getting Parker to bed at night. That was definitely not the case tonight. Parker fell asleep quite quickly this evening. By the time I come home from doing a few errands at 8:15pm my wife was already on the main floor Lysol wiping all of the door handles. This normally gets done every couple of days I guess. To be honest, my wife is the cleaning machine around here. She has always liked to stay busy by cleaning. You know those people who when they get angry go and clean the shower or bathtub? That is my wife. (Side note: Parker is crying, I think he needs to burp - Ahhh... I hear Blue Christmas playing... He is quiet again.) So, sometimes it is difficult to keep up with her on what she has cleaned because she always seems to be cleaning something.

Parker got to try feeding himself finger-food today. The little stars are similar in size to Cheerios but are made by Gerber and melt in his mouth rather quickly. We figured it was time to see if the little guy could use his finger and thumb together to grab small objects. Parker did extremely well, and if his fingers were not so wet from placing them in his mouth, the little stars would have probably not have stuck to them so often. He got a couple of them into his mouth to eat, but for the most part it my wife would pull them off his saliva covered fingers and place them in his mouth. He would then proceed to figure how to eat them. He ended up eating about four or five and the rest ended up either on him, his chair or on the floor beneath him. We have decided that he can play with those each night after dinner instead of the linkaroos attached to his highchair.

I am very happy to see that so many of you have already cast your vote for Parker's Weekly Poll. If you have not as of yet, do so now on the right sidebar and let us know how frequently you visit Parker's site. The fact that I have seen that so many people come at least once a day has made me feel too guilty to not write an article every day the past few days.

Monday, September 11, 2006

You Would Think He Would Be Tired

As of late, we have realised that little Parker has been making it very difficult for us to put him to bed. I am not exactly sure what it has been lately but he screams and yells as soon as he gets in to his room just after eight. Parker takes his two naps each day, one around half past ten and the other closer to three in the afternoon. So we know he is not over-tired. We have noticed that Parker has begun cutting his second tooth. It resides on the lower part of his mouth adjacent to the one that came through a few weeks ago. Yes, I suppose a new tooth can be painful, but to be honest, my son deals with pain very well. With that, I doubt the pain of cutting a new tooth is what is causing him to throw a tantrum. We did not see this when he cut his first tooth.

What we have started to notice is that Parker is beginning to have separation anxiety when he is left alone to play with himself. He cries and wants to be picked up almost immediately when we place him in his Exersaucer. He knows that Exersaucer time is for him and not for Mommy or Daddy. So he starts to cry and puts his arms up in the air begging to be picked up and held by his Mommy or Daddy. Usually, if we are fast enough at distracting him to play with his toys in the saucer he will recall that it is fun to play with the saucer while mommy or daddy does something else close by. Yes, we do succumb to his request to be picked up quite often. We always want him to know that if he wants us that we are there.

For that reason, we are starting to think that that is what is causing him to get upset when it is bed time. He knows that he will have to be by himself for quite a while. Last night, he awoke around midnight as he had some gas from his 300 mL feed prior to bed. The little monkey was so upset when he awoke that he cried, and screamed as he tried to crawl up my chest as I stood there holding him close to me. He was so wound up that when he did belch he spat up on his daddy at the same time. It was dark, and I could smell regurgitate formula so I thought it was much more than it actually was so I called my wife to help me. After, the lights finally went on we realised a second set of hands were not really needed as it was only about a teaspoon. A couple more versus of Blue Christmas and Parker finally fell asleep again. From my reading, we are quite sure that it is around this time that babies begin to get anxiety when they are left without their parents.

We did not take very many pictures today, but I did take a few a couple days ago just before Parker awoke for the day. The images that you see in this article were taken over about 10 seconds. They were literally taken one after the other as Parker squirmed around trying to find a comfortable position to sleep. If I can use the words of my father-in-law, "Parker is a man much like myself", he absolutely hates having covers on him when he sleeps. If he is awake when we put covers on him, he kicks his legs until they are finally under him. You can see by the pictures Parker is definitely not under the covers. Let's hope that Parker has a restful sleep tonight. He has a big day ahead of him as it is Septra and ADAGEN injection day tomorrow.

Sunday, September 10, 2006

Busy Sunday

I really don't know where to start with today's post as I have so much that I would like to share with you. I guess I shall begin by thanking everyone who came out to Yummy Pleasures today for their Art with Chocolate Fundraiser. Yummy Pleasures is an absolutely wonderful little place in Newcastle, Ontario and today they had their annual Art with Chocolate event. Yummy Pleasures are famous for their wonderful desserts, chocolates and teas and if you are ever in the Newcastle area I highly suggest that you stop by to check it out.

If you take the wonderful sweets that Yummy Pleasures have to offer and some beautiful artwork by local artists from around the area you have "Art with Chocolate". My wife and I were so touched by the generosity of Peter and Randy the co-owners of Yummy Pleasures for choosing Parker as their fundraising efforts this year. Thank-you so much.

We all know how strong my little boy is but I was very surprised to find out yesterday that Parker is capable of standing by himself as long as he has something to hold on to. Now, I am sure that I am just being one of those parents who thinks their child is some prodigy, but I have to say I was quite impressed. You can see Parker here, playing with his Exersaucer from the outside. He had just as much fun from this position compared to his regular one from the cockpit of the saucer. He enjoyed spinning his rattle and pulling at his seat as he did his best not to fall as the saucer began to slowly spin around. He still has not co-ordinated his legs with his upper body.

I have been doing my best to get Parker to increase his vocabulary from grunting sounds and the occasional Babababa to something more sophisticated. I tell the little monkey that Dada wants to hear some big boy words not little boy grunts and yells. I am sure that his progress is very normal but when you spend so much time with your child you have very high expectations. Maybe too high. That said, if you set your expectations too low you have nothing to strive for. We are extremely pleased with all of the progress that Parker has made and although Parker has not had an MRI yet we definitely don't see any neurological or developmental problems. Something we were very worried about when we found out that ADA deficiency can cause these types of problems.

Energy. Parker sure does have a lot of it. It is 9:30 pm and Parker just recently fell asleep. He absolutely refused to go to bed. He was extremely tired, but as I am sure many of you who have young children can attest to that sometimes just makes it more difficult to get them to sleep. To tire Parker out, we normally put him in his Jolly Jumper around 7:15p and let him bounce to the "Wiggles" until 8pm. Then, Parker gets bottlefed upstairs in his room, where he normally falls asleep during the feed. Unfortunately tonight, after ten ounces (300 mL), Parker still refused to sleep. He just wanted to cry and yell. After a couple versus of Blue Christmas and some rubbing of his back, I finally got him to settle enough that we could leave him to try and go to sleep. Now, that he is a sleep, he should be good until 6am when he will want a feed before going back to bed.
Thank you to everyone who has placed their vote for Parker's Poll. If you have not voted to let us know how often you frequent Parker's site, please do it now on the right sidebar.

Saturday, September 09, 2006

Parker Short? Says Who?

It was our regular trip to the hospital yesterday with Parker to get his injection of PEG-ADA. Parker used to see the staff immunologist every Friday as a part of clinic, but since he has been doing so well, Parker only has clinic once a month. I am not sure how that is going to change as he creeps closer to the time we go to Italy. But I guess we will find that out in the next couple of months. Parker will have completed the mandatory six months of PEG-ADA on November 2nd.

Although we may not see the doctors every Friday, Parker still does have his weight taken. Every two or three weeks that pass Parker also has his length taken. We are happy to say that Parker is now 9.310 kg or 20 lbs 7.7 ounces. These numbers continue to correlate to the linear regression that I had plotted and displayed a couple of weeks ago. Parker is gaining weight at approximately 20 grams per day. His weight places him just under the 70th percentile for children his age. Recall that Parker was born at the 25th percentile, and dropped to below the 3rd percentile when he entered isolation. So having Parker weigh more that 70% of the babies his age is quite impressive.

Now for his length. The problem with ADA deficient infants is that the metabolites also cause some skeletal damage and for that reason children who are ADA deficient are generally shorter than the average person. Remember, these toxins are not only in the blood but are present in all of his organs. That said, we have definitely witnessed Parker growing in length. His sleepers are getting short and he is on the verge of needing his Exersaucer raised to accommodate his growing in length. Parker had his length taken yesterday and it revealed 71.5 cm. Now, there is definitely some error on that since the apparatus is a little crude but I am sure it is not far off in either direction. Where does 71.5 cm place Parker when compared to other infants his own age? Parker is just about the 68th percentile in his height. Quite impressive to say the least. Now, he does have some tall genes on his side. My wife's father and his brothers and sisters range in height from six foot three to six foot seven. My father and his brother are both over six foot three themselves. So, I think I may have a son who should at least be of average height one day.

I had mentioned that there is a few fundraisers approaching. The first of these is occurring tomorrow at "Yummy Pleasures" in Newcastle, Ontario just east of Oshawa. The fundraiser is titled "Art with Chocolate" and runs from 11am to 3pm. If you are thinking of going we look forward to seeing you there. We will be attending the later half of the event.

Parker has been working extremely hard on his ABC mat in his room. We make sure that he gets at least 90 minutes of time on the mat each day in the form of tummy time or sitting time. We do our best to get Parker to get into a crawling position so that he at least knows what it feels like. We give him lots of praise whenever he does. He has even begun to rock back and forth in that position. He has also learned that rolling can get you from point A to point B. It is is usually not a continuous roll but more of a roll stop, reevaluate point B to my current location and continue on my way. The problem is that he has begun to roll off of his ABC mat and on to the floor. We do not worry to much about it as his room is vacuumed everyday and there is a Heppa filter in his room so the carpet should be extremely clean. That said, he still spends 99.5% of his time on his mat.

Some of you have already noticed that I finally changed the poll question on the right side bar. It was quite obvious that most of you (75%) think that Parker gets his good looks from his dad! The new poll wants to know how frequently you populate this site. So, please vote today.

Thursday, September 07, 2006

Welcome Back!

I have titled this article "Welcome Back" because I have noticed that since school has begun our number of visitors have increased. Not to say that the number of people populating this site were low during the summer but it is nice to get 500 hits a day again. So I would like to take this opportunity to say thank- you to everyone for taking the time out of your very busy schedule to visit our site and see how my little boy is doing.

I know there are probably many of you who would like to write comments on Parker's web site but are unable to. Currently, I have this feature open to family and friends whom which I invited to join the site as members back when Parker was first admitted to the isolation unit at Sick Kid's in Toronto. I would like to open this feature up eventually. Right now, I would like to let family and friends know that if they are interested in becoming members please let someone in my family know via email so they may pass the information on to me. If you currently have my email and would like to become a member, please let me know.

Parker has definitely been a very happy little boy as of late. My wife has started to use the Baby Bjorn more often to walk Parker around the house or to even get the mail at the end of the street. She decided to take the little guy for a walk yesterday using this contraption instead of his stroller thinking he would enjoy it more. Parker definitely enjoys the Baby Bjorn, but my wife found carrying my 20 pound plus baby on her stomach quite a chore. She hadn't made it around the block before she decided she had to come home. I saw her a couple houses down the street, struggling to make it to our door as Parker bounced with each step smiling to the world!

I must say that Parker did very well this week as he accepted his Septra in record time. Parker receives an antibiotic that is used for precautionary reasons called Septra. It combats a severe form of pneumonia called PCP Pneumonia. Parker receives 3.8 mL of Septra on Tuesday, Wednesday, and Thursday morning. I usually sit him on my lap as we watch an episode of The Backyardigans. It is usually the same episode every time, "Racing Day" as it distracts him as I try and give him his medication. It Parker is aware that the Septra is on its way to his mouth he shuts hit lips and turns his head very promptly. I find myself hiding the syringe behind my leg as I try and find the best opportunity to bring the syringe to the corner of his mouth. One quick squeeze and I am able to place anywhere from half to a full millilitre of Septra into him. Parker hates the taste and the trick is to keep him from gagging on his medication. Today, I was able to get Parker to accept the Septra in three quick squirts. Something I have not been able to do until today.

There are several fundraising events in the upcoming month. The first will be happening this Sunday and being put on by "Yummy Pleasures" in Bowmanville. It is entitled "Art with Chocolate" and runs from 11am to 3pm at Yummy Pleasures. I will be posting information about this fundraiser as well as some other upcoming events in tomorrow's post. So, please check back tomorrow to hear about them.

Wednesday, September 06, 2006

Our Prayers Are With You

As I sit down at the computer this evening I cannot imagine having to write an article saying goodbye to my little boy. Yesterday, I had written about a family, whom we know, who's child's body was succumbing to cancer. Today, they wrote the message that I could not dream of writing. Little Grace's body died of cancer this morning. My heart goes out to her family. If you have not visited their site. I ask that you do so this evening. Please say a special prayer for Grace and her family.

Tuesday, September 05, 2006

The Difference Between Wants and Needs

Each day I thank the Lord for having such a wonderful little boy named Parker. I think back to when I found out my little boy had "Bubble Boy Disease" and I remember how terrible I felt and I recall being able to differentiate between the things that are really important in life and the things that most of us try and accomplish in life.

A loving family, caring friends and theirs along with my health are things that I am definately thankful for. These are these things that I truly find important in my life. I have learned that you must focus on the big picture and that is something I have tried to in the past six months. My son is currently healthy, developing very well, as he awaits for a date to take part in the Italian study. This is what I think about as each day passes. I know that keeping my son healthy and my family in good spirits is what is going to make his treatment successful.

I know that we have quite a few people who populate this site and if there is one thing that I can pass on to you it is the following, when you find yourself overwhelmed and bothered by the stresses of everyday life, ask yourself what is truly important. I know that this is not the easiest thing to do. I know people close to me that have difficulties in doing that. I have gone through times where I was unable to do that. But I know deep in my heart what is important and for that it makes life easier for me to cope with.

When Parker was on the eighth floor there were many cancer patients on the floor. Many of their parents were very close to us while we were there as they were our most effective support group. They were going through very similar experiences that we were. During that time we met a little girl named Grace who had a brain tumor. She got to leave the eighth floor before Parker as her treatment seemed to have been successful. About a month ago we saw Grace and her father at the hospital after receiving some horrific news. Grace is currently at home with her two loving parents. They spend every waking minute with her, making her last moments with them as comfortable as possible. I read Grace's mother blog today for the first time in a long while and it helped me recall the difference between the things that we want and the things that we need. Please check out their site. If you do believe in a higher being I ask you to say a prayer for Grace and her family.

Monday, September 04, 2006

I Promised...

It is Monday and I did say yesterday that I would make sure not to skip today's message so I am sitting myself down at the computer and writing my article for today.

My wife is upstairs as I write feeding Parker his last bottle for the day as she tries to put him down to sleep. Parker, my wife and her parents and I went for dinner at Parker's Uncle Michael and Auntie Kate's home this evening. We do not normally take him out anywhere except the hospital but we thought it was a normal thing to do and we felt relatively safe about it since there are not normally any children there with a plethora of germs. That, and the fact that his numbers are up a bit we felt comfortable making the trip with Parker. We brought his playpen so that he had somewhere to play while we got to spend time with our family.

I have recently learned that Parker is able to feed himself. Well, not his solid food but he does hold his bottle with two hands and without any help from someone over 27 inches he can drink the entire bottle. I say that I recently learned this because I saw him doing it with my wife early this afternoon. It was definately a nice thing to see.

Tomorrow would normally be the start of the school year and my wife and I would normally be teaching, but with us not being able to bring any germs into our home we are unable to do so. For that reason, we both have taken a leave of absence until Parker's treatment is completed and he has a relatively normal immune system. We are very appreciative of all the people who have donated so that we may make sure that Parker remains infection free. Unfortunately, controlling the environment in which he lives is the only way in doing so.

Sunday, September 03, 2006

A Long Weekend

It is Sunday night of the long weekend and alot has happened since the last post. I guess I should start with Friday. We had clinic on Friday and everything went extremely well. Parker had his ADAGEN injection, saw the fellow and staff immunologist and we pretty much made our way home. It has been decided and agreed upon that Parker will only be giving blood once a month so that his veins may have a rest. His last blood test revealed that the ADAGEN was doing its job of mopping up the toxins and as a result, Parker has started to create his own T-cells. The next time he gives blood they will be performing a function test to see if his cells are capable of fighting off infection. It is nice having them, but it is even nicer if they do what they are intended to do.

The past week, my wife has been on quite a little mission. A week ago, my wife and I went to the movies to have a night out together. To our dismay, during the commercials prior to the start of the movie we saw a commercial about dentyne gum. The commercial focused around a bubble boy who was about to come out of his bubble to give his date a kiss for the first time. Many of you have seen the commercials, but those of you who have not can rest assured that it was definately in bad taste. We sat there in the theatre as everyone around us laughed during the commercial. Can you imagine someone making fun of cancer? I say that my wife was on a mission because she spent the week making sure that Cadbury the makers of Dentyne gun knew of Parker's condition and that what they were making fun of was in bad taste. To Cadbury's credit, they agreed to pull the commercial from theatres and television. It will take a couple of weeks to remove it from television, but it will be taken off the air. I was definately very pleased to hear that they would realise their mistake and as a result rectify it.

My wife, and her parents took a trip to Niagara Fall, New York yesterday and left the little monkey with my parents for the day. Parker and my parents had a great time together. It is unfortunate that my family does not get to see Parker nearly as much as they or I want them to. With that said, there was a lot of fun and bonding to be had yesterday. Nonno got to tell Parker his name repeatedly, and Nonna got to try and fatten the little monkey up as she had him laughing and telling her a story. I am very appreciative that they were able to spend the day with Parker yesterday and look forward to the next time they can as well.

I have been working very hard on getting Parker to say "dada". We are at the point now where he says, "babababa" and I know it is going to be soon. Maybe he is working on "mama". Regardless, it will be nice to hear him say either.

Check back tomorrow, I promise I won't skip tomorrow's message.