Wednesday, January 31, 2007

The Waiting Game (Mom writes again)

I figured that since my husband is out for a bit and the little guy is fast asleep, I would write today's message. Since Parker was diagnosed, Kevin and I have spent countless hours and days just waiting. I think that this is one of the hardest things when you have a sick child because waiting is completely out of our control. We are forced to wait day in and day out for something. Now we are waiting for the most obvious- that magical date when we may take our little boy to Italy so that he may finally be cured and experience life as every child deserves. Yes, we were told to expect to be leaving at the end of February, but until I have that date and am sitting on the plane I will continue to be anxious about our departure.

I have found that all this waiting is in fact my worst enemy because having nothing but time on my hands has allowed me to think more and in return worry more. I have always been a worrier, but the worry I experience at this time in my life is like no other. I long for the day when I will be able to worry about different things and not the future of my child's life. Yet, sometimes I wonder if I will ever be able to really stop worrying about things that have become the norm for me. Will I ever feel safe being around someone again with the sniffles? Will my heart really stop skipping a beat every time someone comes into my home for a visit? Will I really be able to bring Parker to the playground and let him play with other kids without wondering if they could be sick? More importantly, will I ever feel at peace letting Parker go to school or will I always be waiting for a dreaded telephone call that he is not feeling well?

I often find myself wondering why all these things which are barely second guessed by most parents are the reality of my life. Perhaps it is just all this waiting that has me longing to live my life like everyone else. Trips to the grocery store, visits with friends, social gathering and playgroups. I ache for these moments and often feel so sad that I have not been able to experience them with Parker. Please do not get me wrong, I know that I am a lot more fortunate than many other families and for this I am truly thankful. I am thankful every single second of the day that I was given the gift of my precious little boy. He is what keeps me going when I am having days like today. His smile, that laugh and the way he looks at me with his bright blue eyes make every waiting moment worthwhile.

People often tell us that they do not know how we do it. Our response is that anyone would do it because you do not have a choice. You have to keep going and you have to find a way to get through the toughest of moments because you have a little person that is depending on you for everything. However, we are all human and we all have our moments. There are times, when you just need to talk and you just need a moment to crumble so that you may get back up and continue with a positive frame of mind. I know that when I think of all that we have endured, I truly have become a stronger person. Parker has taught me to be a better person and what it is like to love unconditionally. What better lesson could anyone ever teach someone?

I know that this waiting game will continue to be played for the next several months as we continue to wait for many magical numbers and the successful treatment that Parker is about to endure. I know that the best part will be when we are on the plane home to all of our loved ones and Parker is well on his way to recovery. I long for the day when I can put all this waiting away for a while and Kevin and I can enjoy our little boy, hug and kiss him and share him with all of our family and friends. Parker makes all this waiting worthwhile and as long as he comes home healthy, I know that this waiting game will turn out to be the most thankful game in life that I have ever had to play.

Tuesday, January 30, 2007

Walking soon?

My wife pretty much told me to get my behind into the office and write today's blog. I figure I should oblige. Parker has been up for a while now and is currently playing in his room. He has been sleeping very well through the night. Down to bed around 6:30 and then he is usually out until around seven in the morning. Last night was a little different. He decided to get up at around half past three to play in his crib. When we heard him we thought it was morning already because that is what it sounded like, but a quick glance at the clock reassured us it was not. I read somewhere that Parker may begin waking up in the night just before he starts walking. I am not sure why, or how true that is but he was up last night. Lucky for us, he fell asleep shortly after he started to play.

We do have a trip to Sick Kid's this morning for Parker's ADAGEN injection. We are wondering if we are going to get any more information about our trip and who we should be liaising with. We do have a lot of questions as you can imagine. I have spent the last couple of days looking at Italy tourism sites. I have the subway map on my white board with the hospital highlighted on it. We want to know where we will be staying so that I can mark that on the map as well. I am currently trying to figure out how to get mobile phone and WiFi Internet (to keep the website up and running). I have a couple of leads but am still working on it.

I have to start getting ready for the trip to the hospital soon so I will write more later today after I have returned.

Saturday, January 27, 2007

One Month to Go!

We finally got a date defined yesterday when we got a call from our immunologist at Sick Kid's. He had received an email from Dr. Aiuti stating that the vector has pretty much finished getting approval and that there is only a small portion of the process needed to complete with the vector for Parker. As a result, we should be ready to travel to Milan at the end of February.

One month to go. We have a month to get ready for the biggest trip we will ever have to go on. When we got the call yesterday, my wife had answered the phone and quickly passed it off to me, assuming that medical information would be the topic of conversation and I am normally the one that deals with that. Although the conversation dealt with something completely unrelated to start, and I was in the process of saying good bye, I was quickly informed that there was another reason for the phone call. My parents were over at the time and everyone sat there trying to figure out what we were discussing, since I was more interested in getting information from our immunologist than celebrating.

When I finally got off the phone and told my wife and parents of the conversation I had just had they were extremely excited to say the least. We now had confirmation that we were going. I quickly ran to the computer to write a message letting everyone know of the news. Then, I called Nana and Grand-dad and asked them if they had checked the website lately. Of course, Nana proceeded to check the site under the impression that I had uploaded some more images of Parker. With my wife listening in, we knew Nana had read the message because she instantly started to cry. See, that's what Nana does when she is happy.

One month to go. There is a lot to do in the next month and my wife's anxiety about not knowing when we are going has switched to we have so much to do and we only have a month to do it. Can we bring Lysol wipes to Italy? Should I bring some Tide? How many suitcases are we allowed to bring? These are some of the questions I have heard in the past 24 hours. As I had mentioned before, my mother is from Italy and her cousin's cousin lives in Milan. So, we will make sure that my wife has contact with this person to find out what name brand products you can buy in Milan.

One month to go. One more month we have to keep the little monkey healthy before we get on to the plane. One month left of injections of PEG-ADA. We are unsure if there is anything else the doctors in Canada have to do before we leave for Italy. Will Parker need to have a topping up of his IgG before he leaves? This will give him extra protection on the flight over. Will they need to run any tests on Parker before leaving for Italy?

One month to go. When we get there Parker will be going through quite a bit. He will have a battery of tests done. An MRI, a CT scan, blood work, and x-rays. He will have to go through a lot. They will insert a line into his blood stream so that it is easier to give him medication and chemotherapy drugs (Bulsulfan). I worry if he will spend every waking moment trying to rip it out. He is curious you know. A month and a half of being in isolation with limited space and room to play. This is what Parker should be ready to expect. I wish I could tell Parker that everything he is going to go through in a month is to save his life so he knows that we are not trying to hurt him.

One month to go. We will be hopping on a plane and leaving our family and friends to go to Italy for close to half a year. The people that we are used to seeing everyday will be thousands of miles away. Daily visits from Nana and Grand-dad will be a thing of the past and will have to be put on hold until we return. Rides on Gaga's shoulders will have to wait. The sounds of Parker yelling "Nananananana" will have to become silent for a while. Nonna will have to wait a while before she can sing to Parker again.

One month to go. That is when we will be one month closer to returning home with our healthy little boy. One month closer to playing with his cousins, going swimming at Nonna and Nonno's. A month closer to being able to take Parker to the mall and the park. A month closer to being able to let Parker run around and kick a soccer ball on the grass behind our home. One month closer to returning from the most important trip we will ever have to go on.

Friday, January 26, 2007

Got the Call!

YES! We got the call from our doctor today and that we should be preparing to leave for the end of February. We should be hearing from the Italian doctors in the next week.

I will write more later.

Wednesday, January 24, 2007

What can Parker do?

Good morning. I am at Parker's Nana's home this morning with Parker and his mom. We decided to give him a change of scenery for a couple of hours. So, I am using Nana's computer to write today's blog article.

We took our regular trip to the hospital yesterday for Parker's ADAGEN injection. Parker also had to give blood (hopefully for the last time before we leave for Italy). We went to the ambulatory clinic first so that Parker could give three vials of his blood. In the past, it was always quite difficult for the nurses to take blood from Parker. I recall one time at Sick Kid's, while we were still in isolation they sent a new nurse (from the ambulatory clinic) to take blood from Parker. Let's just say that everyone was crying when she was done, including the nurse. As Parker got older, his veins seem to get much better for giving blood. I also think it had a lot to do with the number of platelets that Parker had at the time. When we were on 8B, all the other mothers complained that their children had no platelets (meant for clotting - stopping bleeding). As for us, we always had more than 1000 in a sample of Parker's blood, a very large number of platelets. Yesterday's blood sample yielded a number of 450, a much more normal reading. As I was saying, Parker's veins are much more cooperative in regards to giving up blood. As a result, other than Parker yelling as he was being held down, it was not a difficult task.

The rest of Parker's numbers, although I do not have them with me were all similar to his readings from the previous month, except that it now seems that Parker is producing IgA and IgM for the first time. That was definitely nice to see. We are still waiting to find out about the other tests that are being done with him blood (TREC, flow cytometry, and t-cell function). We should have the results for those in the next week.

I was very excited this morning for a couple of reasons. One, I received some good news (not about Italy) that I am unable to share with people right now, and second and even more exciting Parker stood for an extended period of time (on three occasions) without support. Now, I know that most children generally walk around 12 months of age and Parker is a week past that, but I have a feeling that if someone did a study they would find that weight is also a factor in when a child starts to walk. With Parker being 26 pounds and close to the 90th percentile for his weight he has a little extra to support. As a result, I am very happy with Parker's physical accomplishments.

What does Parker do? He dances by shaking his head and bouncing on his knees, then spinning around in a circle. He points to the light when I say where is the light, he gets the circle when I ask him to grab the circle from his shapes, he drives around the main floor on his scooter, turning sharp corners or spinning it around to show off, he gets off the scooter when he arrives where he wants to be. He climbs up two sets of stairs separated by a landing to go to the top floor, he shakes his head "no" when he does not want something, he talks in a language that the universal language computer from Star Trek could not understand, he feeds himself cookies, he chases rolling objects after he throws them (similar to a cat), he can throw a ball further than his mom, and he laughs harder than a drunk college student at the Montreal comedy festival.

If you come back later today, I promise you that there will be some images of Parker for you to see.

Monday, January 22, 2007

Pet Peave

I have been pretty bad about making sure that there is an article each day here on the blog. That said, I am here at the computer now so everyone should have something to read very shortly.

It was a pretty uneventful weekend. We have yet to hear anything from the doctor in Italy. We are expecting a phone call any day now but we have gotten used to the wait. It is just hard because we were hoping to go in mid-October, then early November, then maybe in December, then we had our hopes up for January. Now that we are in January we just want to hop on the plane and go to Italy.

Now, on to something different. My wife and I went to Sam's club yesterday when her parents were watching Parker. We are always very aware of our surroundings and whenever we hear someone cough, sneeze or sniffle we make sure to stay clear of them. But I was absolutely shocked yesterday when we were strolling through the aisle and person after person would cough near you without covering their mouth with their arm. It was absolutely disgusting. I am sorry immunodeficient child or not, if you have to cough or sneeze, you cover your mouth. It is only right. I felt like I was in a mine field. Each time I walked by someone I was afraid that they were going to hack on me.

On a similar note, I am sure that most of you are aware that most germs are passed on because someone who is sick has touched something and transferred their germs to that object. Well, anytime I go to the grocery store I am always aware that there could be quite a few germs on the handle for the cart that I am pushing. As a result, I make sure never to touch my face while I am in the store as I want to decrease the chances of transferring germs from the cart handle to my hands and then to my face. I mention this because I was at a Sobey's the other day and they had wipes for cleaning off the cart handle at the entrance. I thought it was an absolutely wonderful idea. That would decrease the chances of germ transfer quite a bit. I was hoping that all Sobey's had adopted this but when I went to another Sobey's in the area, I was disappointed that they did not.

I guess I should mention something about Parker today. He loves Cream of Wheat with cinnamon, brown sugars and apple sauce. Whenever daddy gets up in the morning with Parker we always have Cream of Wheat together. We love it. Yummy!

Parker is starting to stand without support and we are hoping that he masters this in the next week or so. As I know this is the step before walking. I know the little monkey is strong and smart but I would not mind seeing him take his first steps before we go to Italy.

We are heading to Sick Kid's tomorrow as we normally do on Tuesday but this time Parker has to get some blood work done to check his lymphocyte levels. We are hoping that this will be his last blood test before going to Italy.

Friday, January 19, 2007

Recap of a few Days

Many of you have been probably wondering what has taken me so long to write another article. I wish I had a good excuse but I do not. I have been spending most of my time at the computer lately studying and when I do have a moment I generally do not want to sit at my desk. That said, I am here and ready to write.

I guess I should recap what has happened since Tuesday. First, we did take a trip to Jett's house to visit him Tuesday afternoon. Being a brand new baby, we felt quite comfortable that he was neither sick or was going to try and touch Parker if he was. Jett is such a little cutie and although Parker was more interested with "Shag carpeting" and his Uncle Michael's piano playing then Jett we were more than happy to gawk at him.

It has been two weeks today since I emailed the Dr. in Italy to see if he had a date for Parker. He had told us that it would still be a couple of week before the vector was approved and he would call us then to define a date. With that, we are hoping to hear from him very shortly.

I purchased a Bruin baby walker on Wednesday evening for Parker. Now, that he is older than a year we wanted to give him the option of trying to walk with some support instead of cruising, crawling or taking his truck everywhere. I had done my research because I heard that infant walkers are dangerous and are actually forbidden to be sold in Canada. However, these forbidden walkers are actually more like mobile Exersaucers. I feel very confident that the form of walker we purchased is no less safe than any other toy that Parker currently has to play with. Of course, when I put the walker together and tried to get Parker to use it, he was much more interested with the button and shapes that come with it. Parker has yet to use it as a walker. As a result, we are unsure if we are going to keep it. If we do keep it, it will be because of the shaped blocks that he seems to like. I guess we will give it a few more days.

I had mentioned a week a go that we had met with the dietician about Parker's diet. We recently found out that she was worried that we never let Parker feed himself. As a result, when he goes to school and he needs to feed himself, he will just sit there staring at his food, not knowing what to do with it. We did not think she had that impression when we met with her. If we had we would have told her he has been feeding himself puffs and cookies for several months now. Recently, we have let him get even more independent with his eating. Just today, I let Parker try and feed himself orange pieces. Of course, he was more interested in smushing them in his hands we were able to get a regular meal into him.

We did go to Sick Kid's today for Parker's injection of ADAGEN. Recall that ADAGEN supplies Parker with the enzyme that he is missing that is responsible for removing the toxins in his body that kill all of his lymphocytes. Before Parker started taking ADAGEN they took a sample of his urine for testing purposes. It recently came back from a lab in the States showing that he had quite a bit of the toxins in his urine. An expected result since his body is unable to remove them without the enzyme. Today, they decided to take another urine sample for comparison sake. This sample after returning from the States in a few months should show that he has no toxins in his urine. Then, after he has his gene therapy and is no longer taking ADAGEN they will take another sample and see what it shows.

Parker still does not enjoy having his teeth brushed but he does have the whitest teeth I have ever seen.

Lastly, Parker has decided that he not that interested in napping this week. Other than a 30- 45 minute nap, Parker has decided against sleeping during the daytime.

Tuesday, January 16, 2007

Before I begin with today's article, I want to thank everyone who visited Parker's web site yesterday, especially those that wrote a comment wishing Parker a Happy Birthday. A lot of very kind things were said about Parker, my wife and I. I know I have said it before but we do obtain a lot of strength from family and friends and yesterday's comments definitely gave us a plethora of strength. If you did not have a chance to write a comment I am sure that we will be doing this again and when the site has moved to the new domain and I have developed it myself I may open it up even more.

A couple of things have been plaguing Parker the past couple of days. First, Parker was constipated on Saturday and Sunday. On Sunday evening, Parker was on the floor crawling around and he stopped in his tracks and started crying for his Mama. My wife eventually consoled him but about 45 minutes later he did the same thing. We figured that his tummy was upset because of the constipation but when we brought him upstairs to change him he was in the midst of passing a very clay-like stool. It was quite large and must have been very painful for him. Mommy helped him remove it and almost immediately he was happier.

We were pretty sure that we knew why he was having such dense stools and was not going to the washroom as he normally does. On Friday, we were told by his dietician to put him down to two bottles of milk a day and give him water in a bottle or sippie cup in the middle of the day. As a result, Parker would not drink much of the water and in our opinion was not getting nearly enough fluids. For that reason, we have moved him back to three 9 ounce bottles of milk a day with the second bottle being diluted with water. Since we did that, Parker has been much happier.

Secondly, we have noticed that Parker is cutting two more teeth. The two adjacent to the bottom middle teeth. As a result, Parker has once again become Mr. Suckypants. We noticed this the last time that Parker cut teeth. I don't think my wife minds very much because whenever he is sad he cries and says "Mamma, mamma..." As a dad, that is a nice thing to hear at 11pm at night when you are trying to sleep. Last night, he woke at around 11pm for the first time in over a month crying for mommy. "I think Parker is calling you.", I said to my wife with a smile on my face. I know it will only be a couple of days before he finishes cutting his teeth and tough, strong Parker puts Mr. Suckypants back where he belongs.

As the title of today's article implies, Parker was the focus of an article on Severe Combined Immunodeficiency in the Bones issues of WellnessOptions magazine. Dr. Hilda Donhoffer wrote a wonderful article with the help of Lillian Chan (Magazine Editor) about Parker and his disease and we are extremely pleased and thankful that she is helping us get the word out about SCID. Each issue of the magazine has a focus and this month was about bones. If you are interested in reading the article check it out issue no. 29 at I have read the magazine from cover to cover and I must say that it is an excellent magazine all around. It has many very informative articles written by people in the medical field. I would highly recommend checking it out. Thank you so much Dr. Donhoffer and Ms. Chan for a very well written article about ADA deficient SCID.

Monday, January 15, 2007

Happy Birthday Parker

Today is January 15th, 2007 and it was about now one year ago today that I told my wife that Sunday morning that I thought her water had broken and we should take a trip to the hospital so that she could get it checked out. She did not believe me but she did oblige. That evening just after quarter after nine Parker popped his head out to say hello to us for the very first time. Alot has happened in the past year but with everything that he has gone through; however, Parker is everything a little one year should be. I figured that today I would use the article to show mostly images from that day, one year ago.

During my wife's labour we had quite a few visitors keeping us company. Here is an image of my wife walking down the hall with her parents in an attempt to help further the labour.

Around half past eight my wife, her mother and myself made our way to the delivery room to begin the pushing.

At 9:18pm Parker was born and our lives would be changed forever.

Six pounds and thirteen ounces, not quite the big baby we were told Parker was going to be. For those of you who enjoy metric, that is 3.087 kilograms.

There he is after scoring 9/10 on his Apgar. Who cares if everyone does, it was my son's first A.

Mommy and Daddy finally get to take a look at their baby boy together for the first time.

He always made sure he knew what was going on by keeping one eye open. He sure was small.

The two most important people in my life. What more could I ask for?

Parker will always be the cutest baby in the world to me.

I have decided to open up the comments so that anyone that would like to wish Parker a happy birthday may do so today. Do not be alarmed if your comment does not show up right away as there is a delay with the comment being moderated.

Sunday, January 14, 2007

Parker's Birthday Party

Yesterday was Parker's First Birthday Party. We had more people at our home during the party than we have had since Parker was born. Twelve. It was a very special day for all of us.

It was going to be a Backyardigans party so we had all the Backyardigans decorations out along with his Pablo cake. We figured that if we could get Parker down for his nap at noon then he would be up for when people started to arrive at two. However, Parker did not understand that if he went to bed later he would miss a good chunk of his own party. It was half past one when Parker decided he was finally going to fall asleep. Every time we put him down his eyes would fill up with tears, he would stand in the corner of his crib with two thirds of his head above the top bar crying "Mama, Mamaaa..." Parker did not want to go to sleep. He was very sad. So, as I tried to get ready for the party down stairs, my wife dealt with our sad son. She eventually put his favourite blankie on her shoulder and lay his head on that which calmed him enough that he fell asleep.

Eventually people started arriving at around twenty to two and by quarter after every one was there and Parker was sound asleep in his crib. It did give us some time to socialise with our family and friends, something that we have not done in a long time in our home. We all ate the food that we put out and sat around talking, as most of us had not been in a room together in a long time. I on the other hand did a lot of running back and forth to the computer to see if Pittsburgh was beating Philadelphia. They did win and as a result I have moved on to the next weekend. Grand-dad also made it through this weekend and will be joining me with 26 others as we try to be the only one left out of the 8 that began.

Finally, at three-thirty Parker woke and mommy went up stairs to put him birthday clothes on. Parker was still quite tired and did cry as she attempted to dress him. The poor little guy was so tired from crying earlier on. With that, he was up for a very big surprise when he got downstairs. There were alot of people there who had come to see him. When he did arrive on the main floor he could not take his eyes off the mass of people who had accumulated in the living and dining room. They clapped, and then he clapped, they clapped some more and they clapped some more. Parker was quite happy to have so many visitors. He wanted to show everyone what he could do. First he went on his truck and drove around the main floor rather quickly, then he ran up the stairs to show everyone how strong he was and then he hopped on his Winnie the Pooh scooter as Uncle Mikey and Cousin Kyle pulled him around the main floor. Each one trying to out do the other. In the end, it was Parker that was the show off as he took whatever each had thrown at him. Sometimes with one hand on the handlebars, sometimes two. There was nothing they could do to knock him off. See, Parker is the "Winnie the Pooh Master".

Parker showed his Auntie Christini that he knew what a circle was when we asked him to find the circle. He stopped what he was doing, looked around the room, located the object and darted towards it. When he got there, he picked it up and raised it in front of him as everyone clapped. We are currently working on getting Parker to recognise the word square and being able to differentiate it from the circle. Give him a few more days, and he will have that figured out.

After watching a little bit of The Backyardigans, Mission to Mars so that everyone knew who Pablo was we began opening Parker's gifts. Parker absolutely loved his gifts and the paper and boxes that it came with. In only a few weeks since the last time he had to open gifts (Christmas) he has actually gotten better at the process.

Eventually it was time to get to the cake, so I put Parker's birthday bib on, picked him up and placed him in his high chair. I removed Pablo's hat, which was just a cup cake and placed it on a Backyardigan's plate along with a piece of Pablo's head. Then I put the candle on his cake, lit it and we all sang "Happy Birthday" to Parker. He kept trying to grab the cake as we sang but with the lit candle on it I held it back just out of his reach. When the song was over, Daddy helped Parker blow out his candle. Then I removed the candle and placed the plate in front of him.

Very slowly, Parker started putting his hands into the cake. Squeezing it slowly as the frosting slowly emerged from between his fingers. Parker had not tasted the cake so I decided to take his hand with some blue frosting and bring it to his mouth. He opened his mouth and ate the thick blue frosting that was covering his hands. Eventually he started feeding himself as the mess in front of him and on his hands grew dramatically. Parker definitely enjoyed his first Birthday Cake.

With the party winding down we said good bye to our family and friends and Mommy took the blue Cake Monster upstairs for a bath. He returned downstairs with his hands and arms a light tint of blue and ready to explore the gifts that he gotten a few hours earlier.

We are so thankful for everyone who was able to be a part of Parker's birthday party in person or in spirit. It was definitely a very enjoyable day. Tomorrow is Parker's actual first birthday so check back tomorrow for some very early images of the little monkey.

Friday, January 12, 2007

Pablo Cake... A Success

Tomorrow is Parker's birthday party so I spent most of the day working on his Pablo Cake. I do enjoy cooking but I must say that baking and cake decorating are not two of my favourite things when it comes to cooking and food. First off, I do not bake very often and second I barely passed art at any grade level when I was in school. With those two things working against me and the fact that I am very hard on myself when it comes to anything I do, especially cooking, I had quite the task today. That said, I was pleased with the final outcome. I did modify the procedure slightly and if I were to do the same cake again I would modify even more. First, I ended up using three different colours of starburst for the mouth rather than only the yellow and finishing the inside of the mouth with red frosting. Secondly, I used an extra red starburst to shape the pinwheel on his hat instead of using a red M&M to hide the toothpick. I hope Parker likes it.

We did have a trip to Sick Kids today for Parker's ADAGEN injection in addition to see Parker's dietician. I guess that is the good thing about going to Sick Kid's all the time; we get to see specialists whenever we want to ask a question about Parker. We saw a dentist and dietitian in the past week and a half. The dietitian was quite happy with Parker's progress. "Now this is what a healthy one year old is supposed to look like", she said when she saw the little monkey. My wife did have some questions that she was more than happy to answer. It was mostly about how much Parker should be drinking now, and if there were any restrictions on what foods he should be eating.

Apparently, Parker is to be having only two 9 oz bottles of formula/milk each day with a 9 oz bottle of water/juice between them. My wife was not too accepting of her answer as most of what she has read has recommended three bottles of milk. Regardless, I think he will be moved to 2 and a half bottles of milk every day. As for the food? No sushi or unpasteurised honey or nuts of any kind. Peanut butter is okay. We do have to see if he is allergic to peanut butter by putting a dab on his lip tomorrow but she told us with the immunology/allergy specialist that delaying nuts in Parker's diet does keep him from getting a nut allergy it only delays us knowing about it. So, in the next few days Parker will have some peanut butter.

We had a nice visit from my friend Laura today. She got to watch Parker eat his dinner. It consisted of a chicken nugget, boiled carrots, apple sauce, macaroni and cheese and a Minigo, washed down with some water from a cup. It sounds like it was a lot, but he did not eat much of the cheese and macaroni and the nugget took forever. Regardless, he did finish most of his nugget.

I am pretty pleased at how well Parker is at drinking from a cup by himself. He likes having water out of a plastic red cup. I have to help him a bit but for the most part he can hold the cup with two hands, bring it to his mouth and take a sip.

I think mommy is going t o put Parker pants to bed now. He has a big day ahead of him tomorrow with his birthday party. I promise to have alot of images tomorrow from his party.

Thursday, January 11, 2007

Welcome Baby Jett!

Congratulations Michael and Katie on the birth of your beautiful son Jett. After 24+ hours of very intense labour and pure exhaustion, Auntie Kate gave birth to a beautiful 7 pound 5 ounce baby boy. Mommy along with the rest of her family and Auntie Kate's family eagerly waited for 16 hours in the waiting room to meet the newest addition to their family. We are so excited and cannot wait for Parker to meet his baby cousin. It is going to be a lot of fun when we are home from Italy and Parker can finally play with Jett. We are so happy for Michael and Katie and know they will make wonderful parents as they begin this new journey as a family!

Wednesday, January 10, 2007

Baby on the Way

I finally made it to the computer today. I think Parker has recently fallen asleep so I now have some time to myself. See, Parker's mommy is out for the day because Cool Auntie Kate and Uncle Michael are having their baby today and she along with Nana and Granddad have gone downtown to be there during the labour. Parker is going to have another cousin and although we are still unsure if it is a boy or girl we are evtremely happy for them. Last I heard it will still not be a few hours until the pushing starts so Parker and I will just spend the rest of the day playing with his blocks and puzzle.

With mommy gone for the day I thought it would be fun if Parker and I had chicken nuggets for lunch. Parker gets really excited watching me eat and whenever I bring anything to my mouth he opens his as the food goes by. So, today I thought I would give him some nuggets dipped in apple sauce. I did not take off the breading but I did cut the nugget into somewhat small pieces. The little guy polished off about a third of a nugget which took him a little while to do, but he enjoyed it. The second piece was actually quite large but he did chew it into very small pieces before he washed it down with more apple sauce. Who knows what I will give him tomorrow.

The homogenized milk is going very well. Parker now has half milk mixed with half formula with every bottle. My wife no longer wants to purchase formula so when that runs out next week it will be just milk. Maybe he will wash his birthday cake down with a big glass of milk on Saturday.

It was easy to see Parker's teeth when I was feeding him this afternoon, so I made sure to inspect them to see if they still had any discoloration. They defitely look clean; however, one tooth does still have some greyness on the left side of it. I am extrenely pleased at how well the teeth brushing has helped Parker.

Sears came today to clean the carpets on the second floor and stairs. My wife had booked the appointment before the December holidays to ensure that they were spotless for Parker. Yes, they are vacuumed on a very regular basis but a deep cleaning will help even more.

Lastly, I finally cleaned the HEPA filer yesterday. Parker has one in his room, but there is also one attached to the main heating and cooling system for the house that Great Gulf Homes put on for us when they heard about our son's conditiion. I must say that our builder has been very accomodating. They agreed to complete our year-end repairs while we are in Italy (extended the year end to almost two years) and they also put in a top of the line HEPA system for us. Top-notch, all around, they are.

Well, I am going to see if I can get some studying done before Parker wakes up. I am on the last chapter and should be able to start reviewing my notes in the next couple of days. I should have this exam written and passed by the end of the month.

As soon Cool Auntie Kate has here baby, I will let everyone know.

Monday, January 08, 2007

Pull the Goalie

I know I have said it before, that I do not like having a couple of days between articles but I have to say it does give me more to write about.

I am currently in a hockey pool and doing quite well ( I made it through the first week), so I thought I would begin with a little hockey analogy today. In my opinion, when it comes to Parker's feedings no one can feed him faster than myself. I don't know what it is but when we are short on time and the food needs to get in Parker's belly I am definitely the guy to call on, much like a good goalie on a hockey team. Now, I am starting to think back to a hockey game in which Patrick Roy was playing in, while still in Montreal. Actually, it was his last game playing for the Canadians. There was a new coach and a new general manager and during this game the Montreal Canadians were playing terribly. It did not matter how well Patrick Roy was playing there were only so many shots that he could stop and as a result, the other team had started running up the score. I mention this because two nights ago Parker decided he wanted to be difficult and try and hit every spoonful of food that I brought to his mouth. I am usually extremely good at dodging the swipes but that night they were coming at me faster and at a greater frequency than I had ever experienced before. First one, then a second, then a third. The spoon and food was flying everywhere. It had finally reached seven spoons hits and quite the mess as a result that I decided to do what Patrick Roy did that night. He pulled himself from the game and told the coach to put in another goalie. Now, I was much nicer than Patrick was. For one, I did not demand a trade. My wife did oblige and as I made my way to my office I rejoiced in knowing that the goalie that had replaced me was getting shell-shocked as well!

Moving away from hockey but staying on the topic of food, I am happy to report that Parker has started having homogenised milk the past couple of days. Yesterday, we mixed 5 ounces of 3.5% milk with 4 ounces of formula for his afternoon bottle. This morning, when I fed him I did something similar and for lunch we will do the same. Tomorrow, we will do it for all three bottle he gets. We have decided that we are no longer buying formula and that 3.5% homogenised milk will be phasing out his Nestle Good Start. Which I might add is a very good formula. Parker did try a few different kinds when he was underweight and this is the one that got him to the 90th percentile for weight.

Parker's first birthday is a week today. We are hosting a very small party for the little guy to celebrate his first year. Everyone is very excited. I am making a Pablo cake for him. I purchased the food colouring this morning from a cook store in Oshawa. I am pretty sure that the little guy is going to make quite the mess out of it. Well, he will get his own section of the cake to rip apart. If you checked out the link about you will notice that Pablo has a beanie that is made from a cup cake, so Parker can have the beanie to eat.

For those of you that know my wife, you will agree that she does enjoy talking. Well, Parker has definitely inherited that trait from my wife. We do not understand much of what he is saying and to be honest, I am not sure if he does either. I say this because Parker and I were in my bedroom playing near the ottoman while my wife readied her self in the bathroom. I was on my knees in front of him as he stood holding onto the ottoman with one hand. Parker stared at me, then put his hand on my shoulder and very clearly and confidently said, "Mama". Now, I know I have gained a little weight since Parker was born and maybe I look like I have breasts but I am pretty sure that I have been letting Parker know that I am daddy. Regardless, I picked him up and repeatedly told him that he is Parker, I am daddy and the woman laughing in the bathroom is his mommy.

As I mentioned, I am in a hockey pool and out of 80 people who signed up, I am one of 35 people who made it through the first weekend. Let's hope that I have another great hockey story to share after next weekend. Check back later as I hope to have some images to go with this article.

Friday, January 05, 2007

Short Article

I know this message is short in comparison to my other messages but I am tired this evening. I did want to make sure that there is something for everyone to read, especially if you visit this site on a regular basis so I thought I would write regardless.

We made a trip to Sick Kids today for Parker's ADAGEN injection. It was quite busy in the immunology clinic. I think with it being the first clinic of the new year that many SCID families were scheduled for a clinic today. We did not have an official clinic appointment but we did talk to our immunologist to see if he had heard anything about our trip to Italy. He usually speaks with the Italian center once a month in regards to Parker so I was curious if he had heard anything. He had not. That said, he did tell me that if I wanted to email the Italian Center I could, which is exactly what I did. The vector is still in the testing phase, as it is taking longer than normal but should be good to go in a couple of weeks and when it is we will be contacted about defining a date for Italy. We felt good about that and are extremely dedicated and excited in taking part in the gene therapy study in Italy.

We did find out today that there is another family in Canada, in a different province that have a child with ADA deficient SCID and will most likely be taking part in a trial in the United States. I am not sure how old the child is or where they are from but I definitely wish them all the best with their treatment, as we know what they are going through.

Mommy is currently trying to put Parker down for bed as I write. He missed his nap today and as a result is quite tired. I am sure he will have a good sleep tonight.

Thursday, January 04, 2007

Bathtime Can Be Fun

My wife told me that I better get my butt over to the computer and write the article for today. "You have not written an article in a while", she said during dinner. Actually, it was only a couple of days ago, but I did have every intention of writing yesterday. I had the images ready and everything. Regardless, I am here and am now updating the site.
There are two things of importance that I wanted to write about. The first being how the tooth brushing has been going. I had mentioned in my last article how the dentist at Sick Kids had showed us how to brush Parker's teeth together. We took her advice and although Parker fights us for the full 90 seconds, I am able to clean his teeth much more effectively. I blast the Wiggles in his room so he can hear it in our bedroom where we use the chair and ottoman to sit on as we brush his teeth. We have completed several teeth bushings and I must say that I have definitely noticed his top teeth getting cleaner. The greyness that was on his teeth is slowly starting to dissipate. It is hard to check his teeth afterwards because he is so sad during the brushing and I don't want to stress him out any more than I already have; however, while I am brushing, they do look much better. I am starting to think that maybe they were just a little bit dirty.

We feel terrible for Parker during the whole ordeal because he is so sad; however, we know that we are not causing him any pain so the crying does not stop us. When it is over, mom gives him big hugs while daddy grabs his Winnie the Pooh scooter so that he can travel around the upper floor. It makes him forget the brushing rather quickly.

Secondly, Parker started taking baths in the tub without having to sit in his "Ducky Tub". Mommy fills the tub with warm water, bubbles and his toys and Parker hops right in. He was such a good boy for his bath the first two days at it, but mommy told me tonight at dinner that he was not too happy about his bath tonight. Nana and Grand-dad were over for dinner tonight so maybe it had nothing to do with the big tub and everything to do with wanting to play with them.

We have another trip to Sick Kids tomorrow. I emailed our immunologist to see if he had any information about Italy. If I don't hear anything in the next day or so I will make a call to the center in Milan to talk to Dr. Aiuti to see if he has a date for us yet.

I hope everyone enjoys all the pictures the past couple of days. My wife likes it when there are a lot of images, so I thought I would make her happy. To be honest, We have been taking quite a few images of Parker lately, and if I have a lot of good pictures on the camera when it is time to write the article then I usually include them.

Tuesday, January 02, 2007

Parker's Trip to the Dentist

We woke up this morning a little anxious about Parker's trip to Sick Kids because we knew he would be seeing the dentist. Parker has discoloration on his top four teeth and the teeth adjacent to the two middle ones are quite grey. We originally thought it may be due to his Septra that he receives three times a week but when we were assured by our immunologists that it wasn't, we thought it may be dental carries (tooth decay). We have regularly brushed Parker's teeth, although he has fought us quite a bit the past few weeks, so the thought that it may be our fault did upset us.

Since Tuesday, we have been worried about Parker having to get x-rays of his teeth and the stress he would be under during the visit to the dentist. However, the dentist was very nice and with my wife's help showed us how to properly brush Parker's teeth. For those of you who are interested in knowing how to brush your infants teeth, here are a couple of methods.

First, use a stage one (4 - 24 month) toothbrush with a pea-size amount of regular toothpaste (any flavour). That means it has fluoride. The small amount of toothpaste will not bother your child's stomach if it is swallowed. With my wife holding Parker in her arms with him facing her, the dentist sat across from my wife her with a pillow in her lap. My wife lay Parker back on the pillow with Parker's head looking up at the dentist. Using a circular motion, spend about 15 seconds brush each tooth. Parker does not have any molars, so using your finger where his molars are allowed the dentist to keep Parker's mouth open. Using another finger allowed her to reveal his teeth and with my wife holding his arms, she proceeded to brush his teeth.

The first thing we asked was how long should we brush his teeth for? She said about the length of a song. Of course, I looked at my wife and then blurted out how long is this song? "About 90 seconds", she replied. That ought to be fun.

Now, if you do not have a person to help you brush your child's teeth and they are squirmers like Parker then you can place them on the floor with their head between your legs, looking up at you. To stop them from moving so you can brush their teeth, put your legs over their arms and legs. Yes it sounds cruel, but eventually they will not give you such a hard time when you brush your teeth and you will not have to restrain them. God, it sounds mean.

We also asked about Parker's teeth grinding and apparently this is normal. He will stop eventually and will be no worse due to the habit he currently has.

Now, for the discoloration and the x-ray of Parker's teeth. As soon as she finished showing us how to brush his teeth she informed us that he will not be needing an x-ray. The discoloration is not due to brushing, or baby bottle tooth decay. It was linked to his condition and most likely occurred during development of his teeth during in-utero. His weakened immune system was most likely the cause of the discoloration and with an improved immune system (PEG-ADA has been helping with that) it should not worsen. We were definitely relieved about that. That was probably the best possible scenario it could have been for us.

In addition to seeing the dentist today, Parker also had more excitement. This one was something we thought he may enjoy. With a couple of weeks to Parker's first birthday and with his height and weight meeting the requirements, we repositioned Parker's car seat behind me, in the front-facing position. It was a completely new experience for Parker and he really liked it. He loved looking out the windows as well as being able to see mommy who sat diagonally from him. I also placed a new activity for him to play with on the back of my chair. I think it made him forget about his trip to the dentist a little bit.