Saturday, April 29, 2006

Another Day Without Daddy

Before Parker was diagnosed with SCID I rarely got sick. Those of you who have been visiting this site for a while will recall that it was only two weeks ago that I was sick at home for the Easter weekend. This morning I woke up extremely congested with a fever. Now normally when a parent is sick they do not worry too much and still care for their child. But with Parker, I am unable to. The chances of him catching what I have is far too great, and if he does catch what I have he will not be able to fight it. So I spend my weekend at home tending to my fever.

The problem with being sick on the weekend is that its effects are far greater than being ill on a weekday. It is the weekends that I get to spend more time with Parker. We can have 'daddy time' all Saturday afternoon and all Sunday. This also gives mommy a break. You can imagine how warm it can get in the isolation room with all of that sterile gear on. So by being at the hospital I can give my wife some well needed rest away from the yellow sterile gown. We are very lucky that Parker's nonna spends Saturday mornings with him as it does give my wife one day to sleep in.

The Toronto Sun posted an article today about Parker on page five. Although I was a little disappointed about how little was actually said about the disease they did give out the URL for this site. I figure that there is not a better site on SCID caused by ADA deficiency than this one. I do not normally toot my own horn but I can't think of a better way to learn about a rare disease then to follow a child and their family who is actually going throught it. They also were kind enough to mention that there will be a benefit concert at the Rivoli in Toronto on June 16th for Parker. Although the line up has not yet been set, I am sure it will be a great night for everyone.

I have continued to put the word out on the Internet about Severe Combined Immunodeficiency. I really want to make sure that as many people know about this disease as humanly possible. We were very lucky to have Parker diagnosed so early as it gives him a much better chance at being cured of the disease. We would like more parents to know that this disease does exist. My wife and I never understood why our baby had so few lymphocytes when he was supposed to be fighting an infection as the exact opposite should have be true. It was not until the doctor's at Sick Kid's told us what he had that we knew why. The hospital we were originally at just sent us home. So again, please look at some of the previous articles, check out some of my links and please let people know about the disease.

Before I finally sign off for the day. Tomorrow is the last day for the babiesonline baby photo contest. So please click here and vote for Parker. I want to post that he won the photo contest on Monday morning.

Friday, April 28, 2006

PEG-ADA to Start Soon

Parker had another visit from his occupational therapist yesterday. I am not sure if my son plans it this way but it seems as if everytime she comes to work with him he decides to take a nap 20 minutes before she gets there. We have decided to lay down the law, as he was forced out of bed when she arrived. He tried to play us for a while by just sleeping in his Bumbo, but after a few taps on the shoulder he began to look around. Of course, he looked over his left shoulder for a good few minutes as he stared at his saturation monitor. But eventually he decided to do his regular thing and scope out the rest of his room.

It was Nana's and Grand-dad's anniversary yesterday. I thought it would be a trea Grand-dad if we video taped Parker for a while so he could see his grandson since he went into isolationt for six weeks ago. Parker was such a good boy on video, smiling and playing. So far I have only placed images on this site but shortly I should have some short video of Parker for those that want to see the little guy in action. Parker, Daddy and Mommy all hope that Nanna and Grand-Dad had a wonderful anniversary yesterday.

Some good news has finally arrived. The PEG-ADA for Parker has been approved. Hopefully it should arrive at the hopsital in the next couple of days. Once it is here, Parker will receive the injection twice a week in a muscle. This will supply him with the enzyme that he is missing and as a result the toxins in his body will start to decrease. Remember the purpose of adenosine deaminase is to neutrolize the dATP in the body. The toxins kill off his T, B, and NK cells (immune system); with the toxin removed he should be able to at least have some normal T-cell production and function. I have mentioned previously that this is definately not a long term solution as the body finds a way to eliminate the T-cell function after a couple years. However, it will allow us to take Parker home in about six weeks until we do go to Italy. We are so happy that our little boy will get to come home. We will not have to wear the protective gear, and close family and friends will be allowed to visit as long as they are healthy.

So that we can control the traffic in his room, Parker has been assigned a core group of nurses (10) for the duration of his stay in isolation. This is important as we want to dramitically decrease the chance of Parker obtaining an infection while he receives his enzyme replacement therapy.

Remember to vote for Parker each day until the contest is over April 31st.

Thursday, April 27, 2006

Twelve Pounds!

We waited anxiously the last three days for Parker to reach the twelve pound mark. Finally, at last night's weigh-in Parker was 4.54 Kg exactly 12 pounds. Hurray, Hurray! That places Parker at the 10th percentile plus or minus a couple percent.

I must say that the "Wiggles" are starting to grow on me. You know that Australian band that writes and plays children's music? Sort of like a contemporary Sharon, Louis and Bram. Pretty catchy I must say. To be honest, I have started to listen to them when Parker is not even around. I think my wife's favourite time of the day is when Parker and her dance to the Wiggles. Last night I got to witness all the cool moves that they had been working on throughout the day. Look out Frank Sinatra because Parker has got the moves.

My wife and I met with the genetic councillors yesterday. It was pretty much review of basic genetics from high school biology. I had previously gone over everything they discussed with us with my wife so everything they said she had heard before. They were definately very nice and thorough and anyone who must go through something similar to us should probably work with a genetic councillor to learn more about the science behind their disease.

We did learn the different options in regards to genetic testing when we do want to try and conceive another child. Recall that there is a 1 in 4 chance that each child we have will be homzygous(two bad genes) for ADA deficiency . But I will leave that for another article when it is closer to that time. Right now, all our attention is making sure that Parker gets better.

Remember to vote for Parker! The contest is over at the end of the week.

Wednesday, April 26, 2006

Why so Cranky Today Little Monkey?

Parker was a little cranky yesterday. He really did not have much interest in playing except for dancing with his mommy and watching his friends dangle from above his head. I have read that babies begin teethinig at around four months of age, although their first tooth is not usually visiable until six month. This may be one of the reasons for his irratability. Parker has also been growing quite a bit lately, that may be a reason. However, I think that may not be it since babies are usually cranky during the day because they have not been sleeping at night since they feed more often during a growth spurt. Parker has been sleeping uninterrupted at night except for a couple feeds around 1:00am and 6:30am. Lastly, Parker has quite the diaper rash. I feel this may be the main culprit for his change in attitude lately. There is a specialist coming to look at his rash today.

Parker has been accustomed to having his mommy give him his bath each night before he goes to bed. Yesterday he was in for a treat as daddy decided to take a crack at it. Well, I figured that bath time was definately suppose to be relaxing so I decided that it was more about sitting back and chillin' out than cleaning. So Parker got to have a very different bath experience. He may be a little less clean today but at least his day ended with a little less stress. I am sure mommy will make sure that Parker is squeeky clean tonight.

The baby contest will be coming to close at the end of the month so please make sure you vote each day. You can click here and then select Parker Joseph as the cutest baby for April or use the link at the top of this page. Please vote daily.

I am not sure if it happened over night but I have noticed I am a different person since having Parker. I used to be very laid back, not extremely vocal about anything, and if something bothered me I would just try and let it pass. That has definately changed for me when Parker came into my life. Trust me, when I feel something is not right that involves my son, you better be prepared to get an ear full from me. There is nothing I would not do for Parker, and with his current condition there is a lot to be done and I promise to do it.

Tuesday, April 25, 2006

Just Another Day at the Office

It was the start of a new week yesterday which meant Parker had his weekly blood taken. This allows the doctors and myself to see what the different levels are in his blood. Obviously, his lymphocytes are extremely low (B, T, and nk cells) but we have also noticed a couple of other things that outside of the normal range. Parker's platelets are quite elevated. For those of you that are unaware of what platelets are, they are cells in your blood that help to allow for clotting. So, when you get a cut, it is your platelets that help to stop the bleeding, eventually forming a scab. Now, I am unsure why Parker's platelets are so elevated but it seems as if everyone here on the bone marrow unit needs platelets. Too bad Parker could not give them some of his.

Parker was previously on an antibiotic called Septra that acted as a detourant to PCP Pneumonia. A couple of weeks ago we noticed that Parker's poly count (neutrophils) was quite low. It had previously been normal but over the past couple of weeks it has dropped to an unacceptable level. There are different reasons that this could occur but the doctors felt that the Septra was the most likely reason for Parker being Neutropenic. It has been over a week since Parker has come off the Septra but his poly count has yet to return to normal. I will let some more time pass before I begin to become concerned.

The occupational therapist came by to visit Parker yesterday. She was a little surprised with his attempt at crawling. She asked us to focus less on that and more on getting him to learn how to sit up. So we go through the motions with him on sitting up. I am sure that the little guy will have it all figured out soon. As well, we were told that we have to teach him not to slouch in his Bumbo chair. Placing a blanked behind him has rectified that problem. We don't want him turning into a slacker.

Remember, Parker is still in the finals of the baby contest at So, make sure you vote each day for the little guy. You can click here or on the link at the top of the page under Photo Contest. For those of you who have come to this site for the first time today, please come back regularly to see how Parker is doing in his battle against severe combined immunodeficiency.

Monday, April 24, 2006

I'll Take Parker to Show in the Sixth

I went to the horse races a couple of years ago with my wife, brother and my sister in law. Every twenty minutes we would look at our programme and try to figure out what the best horse was to bet on. We would analyse the horses' past races, see who the jockey was and even ask the person beside us once in a while. But we never could choose the correct horse to bet on. After five races we were destined to leave the track down a good 50 dollars. It was then that I told my wife to throw the programme away and follow me to where the horses left the stable and made their way to the track. We watched each horse as they made their way to the starting gate. It was then that we noticed a single stubborn horse. All the other horses marched in a single line with their jockies sitting up straight on top of their horse. But this horse would have none of it. The horse's trainer did everything he could to keep the jockey on him. Then, when the horses did reach the gate another delay occured. The same horse refused to settle for quite some time forcing the jockey to get off the horse until he calmed down. It was then that I told my wife it was this horse we would bet on. We grabbed a programme and noticed that this stubborn little horse had 60-1 odds to win. We ran to the window and placed a five dollar bet for him to Show. When the race began our horse seemed to be doing what everyone had expected, he sat there at the back of the pack. And then, when no one expected, he displayed a burst of energy like no other. Down the stretch we watched him pass horse after horse. He was focused on one thing and one thing only. To show everyone that he could do what no one had expected. In the sixth, our horse came through. He finished ahead of all the other horses and our five dollar bet to show was enough to cover our losses and some. Parker is a fighter and we know in our hearts that he will beat all odds.

Yesterday was another difficult day on 8B. Hannah, a beautiful four year old lost her fight against cancer. Our hearts go out to this family and our thoughts and prayers are with them as they cope with this significant loss. As each day passes, we are learning more and more to cherish each moment that we have with our loved ones and to be thankful for the time we have been given to share and express that love.

Sunday, April 23, 2006

Chunky Little Monkey

My son has really started to pack on the pounds. Since coming off the I.V. his appetite has come back in full force. Now, he did not gain too much weight when he first came off the I.V. but last night he shocked us all when he gained two and a half ounces. Parker is just under 11 and 3/4 pounds now, which according to my weight chart places him just over the 10th percentile. I know we have a dietician assigned to us but this is one aspect of Parker's health that I feel more than capable at regulating. Parker is playing catch up to the 25th percentile (birth percentile) and I have been monitoring how quickly he has been doing it on my chart (the same one as the hospital). Recall that Parker is on increased calories (concentrated formula) due to his overactive metabolism that is caused by the ADA deficiency. If my wife and I feel he is gaining weight too quickly we will discuss it with his team. For now, we are very happy with his weight gain.

During my wife's and my time with Parker yesterday we noticed him trying to crawl again. The little monkey really thinks he has somewhere to go. The isolation room that Parker is in is not extremely spacious. We have quite a few different activities in the room for him to do, but we currently do not have the space to let him learn how to crawl. I know this is something that babies do not normally do at 3 months of age but I am sure we all agree that Parker is not a normal baby. Yes, we work with Parker on specific things each day that we feel are important for his development but if Parker wants to try something new like crawling, I am going to find a way to let him try.

I again want to thank all the new visitors who have visited Parker's site over the past few days. In the last 48 hours we have had 584 new visitors to the site and a total of 1350 hits. I never thought that this site would gather so much attention. It is so important that we get the word out about Severe Combined Immunodeficiency. So please let your family and friends know about this site and come back often to see how Parker is doing with his battle against adenosine deaminase deficiency. And remember to vote for Parker as the cutest baby on babiesonline for April.

Saturday, April 22, 2006

Final Round Starts Today

The final round for the baby photo contest began this morning. So many of you voted for Parker in his previous round that he was able to make it to the finals. Parker needs your votes in this final round so please click on this link and vote for the little monkey. I know I don't normally start my articles with a request like this but we are so close and if we can get everyone who visits this site to vote each day we know Parker is a shoe-in for the cutest baby for April on BabiesOnline.

I had mentioned a couple of days ago that Parker had lost his massive appetite but it seems as if it was only temporary, as we had thought. Yesterday, Parker was back to his normal self and was able to throw back close to 700 mL again.

With the good comes the bad. We noticed a few days ago that Parker was getting a pretty bad diaper rash. We are pretty sure that it was a result of the Pentamadine, an antibiotic he gets (every two weeks - IV) as a precaution to fight PCP Pneumonia. We noticed the last time he had to take antibiotics he also go a bad diaper rash. But ,we know that mommy will help him take care of it. She does an amazing job each day taking care of her little baby's skin. As she says, "No SCID of mine is going to have bad skin". Recall, that many SCIDs have problems with their skin due to infection. He may not enjoy getting moisturizer on his body each day but I have to admit, I do admire his perfect complexion.

Yesterday, I wrote acouple of messages on Today's Parent as well as a few other discussion boards telling people about Parker's condition. My wife and I feel that Parker was given this disease for a reason. Not very many people know what Severe Combined Immunodeficiency is, and we want that to change. It is expected that many infants go undiagnosed each year and succumb to this disease before they are 2 years old. This does not have to be the case. So please get the word out about SCID. Let people know about this web page so that they may learn more about it. We know that Parker is going to be part of the solution via gene therapy and the more people that know about the disease and gene therapy the better. I want to thank everyone who visited yesterday for the first time. Please know that by informing others about this site you are helping others parents learn about the disease. If we can help just one more mother or father get their infant diagnosed early enough so they can get treatment before it is too late then that is one more family that will not have to feel the grief of losing their baby.

So please come back regularly to be a part of the fight against Severe Combined Immunodeficiencies and watch Parker as he beats this horrible disease.

Thursday, April 20, 2006

Anyone See the Little Bumbo Bee?

I had mentioned in my last post that we were going to bring in Parker's Bumbo Chair from home. This way he can sit in his chair a couple of times a day to learn how it feels. Parker has always loved being on his tummy, back or his feet but this was one thing he did not enjoy doing until recently. As you can see, Parker looks quite comfortable as he stares at his friends on his mobile.

When I arrived at the hospital today after work I felt that I should give Parker his regular "tummy time". Today however, when Parker decided to move his legs back and forth, as I have been accustomed to seeing, he actually started to move. I don't know where he planned on going but I was very happy to see that he came to a hault as he forgot to reposition his hands in front of him. If it were not for that, the little monkey would have crawled right out of his crib. I do see him looking at the sliding glass door to the anti-room all the time. Maybe he was trying to make a break for it.

Parker has been struggling to get 600 mL of formula down since he came off his IV. Mommy and daddy are not too worried about it though since our family has never had a problem eating. Our problem is stopping once we started. We were happy that Parker picked up another ounce today. It will not be long before he is 12 pounds.

I know it is already posted on the top right of the page but Parker's final round in the baby contest is coming up on Saturday and he is going to need your help to win. So check this site regularly and click on the vote for Parker link starting Saturday so my little boy can win his first contest.

Wednesday, April 19, 2006

A Day of Rest

Parker had gone through quite an ordeal Tuesday. You can image how seven pokes and a six hour I.V. in your head could tire you out. That is exactly what it did to Parker. Parker was quite tired today. Of course, that did not stop his mother from working with him on his exercises. The occupational therapist came by today to evaluate Parker's development as she does every week. She again was very impressed with his development as of late. The last time that she was there to see Parker she asked us to work on his sitting. As a result, we brought in his swing to help him learn how to sit up. The occupational therapist told us that his sitting is now much improved and suggested that we now bring in his Bumbo Chair to reinforce his sitting. She feels that his neck control and strength are more than ready to handle this advanced task.

Parker had gained quite a bit of weight after his IGG transfusion on Monday; much more than we had anticipated. So when we weighed him tonight, we were not surprised that he dropped much of the weight he gaines from the night before. Parker is now 11 lbs 7 ounces. Although there have been some concern that him gaining weight to quickly, we are very pleased with this trend and are doing what we can to help him reach an appropriate weight for his age and condition.

The dietician did come by today to take measurements for his length and head circumference. Parker's head circumference is now at the 50th percentile. We are very pleased about this, as I feel that it supports our belief that Parker's neurological development is normal. Parker's weight is just below the 10th percentile, and his length is below the third. We are not too surprised about his length as we do know that an ADA deficiency can cause skeletal abnormalities. However, we are pleased that he has grown 1.5 inches in the past month. Parker may be short for a three month old, but that does not mean he will be short the rest of his life. There is no data on how genetic therapy affects the skeletal system long term.

Tuesday, April 18, 2006

Some Days Are Tougher Than Others

The past few days I have been writing articles that have been quite positive. I wish that was all there was to write about but unfortunately there are days that are much more difficult to deal with than others.

When we woke this morning we knew that Parker was going to have an I.V. so he could receive more immuno gamma globulins (IGG). These are one of the kinds of immunoglobulins (B-cells) that a normal child produces. Parker's blood is checked each week and yesterday it revealed that his IGG was low. Usually every four to six weeks Parker will have to receive an IGG transfusion to replenish these cells. These cells do provide him with a very humble immune system.

When the I.V. team came this morning to try and set up his I.V. they tried relentlessly to find a vein large enough to use. With each try came another poke. With each poke came another loud cry. After exhausting all of the veins in his feet and hands, it was obvious that a vein in his head would have to be used. Something my wife and I were not looking forward to but knew would have to occur eventually.

It was not until the early afternoon that two exceptional men came to see Parker from the neonate transport team. They spent over 45 minutes with our son, comforting him as if he was their own. Normally, when a vein in the head is used for an I.V. a portion of the hair must be shaved to be able to make room for the needle. My wife and I were so happy that these two extraordinary men were able to insert the I.V. into his vein without having to shave Parker's beautiful hair. We would just have to hold him until the transfusion was complete six and a half hours later.

Today was a very tough day for my wife. In addition, many of the people who read this web log may have also had a difficult day. Unfortunately, there are things that happen each day that put our pain into perspective. When my wife and I first found out that Parker had a form of SCID we were devastated. How could this have happened to us. At the same time that we were finding out about ADA deficiency there was another family that had been going through the same thing at the hospital. It was not the same form of SCID that Parker had but the ramifications of the disease was the same. Their child had no immune system.

The couple had been at the hospital for over 100 days and their child had just had a successful bone marrow transplant. We were so thankful that this couple had decided to take the time to see us. They spent over an hour with us as we sat in a conference room as they tried to explain what it was like to have a child with a Severe Combined Immunodeficiency. For the past six weeks we have been in regular contact with them at the hospital. Whenever we see either of them we ask how their little boy is doing. See, their son had gone through quite a bit prior to his BMT and as a result has been in critical care for the duration of our stay on 8B. Last night, at eight months of age, they lost their precious little boy.

My heart goes out to this family. I cannot begin to imagine how they feel. The only reason I mention this story is because so many families go through similar situations at children's hospitals around the world. It’s when things like this happen that people begin to put things into perspective. Like a poke, an argument with a friend, or a tough day at work.

Monday, April 17, 2006

Daddy's Little Prince

It had been five days since I had actually been able to go into the isolation room with Parker. I was so excited when I gowned up this morning as I looked forward to spending some long awaited time with my son. After we walked around the room together so Parker could make sure that everything was where it should be we made our way to tummy time. Parker decided to show his daddy how he had been working on his rolling over to one side. I was so impressed with the progress he had made over the past few days I decided to show him how to finish the rollover so he could go from being on his back to him tummy. Parker was very pleased with his accomplishment, as was his daddy.

I had mentioned in the previous article that Parker was going to be starting a new antibiotic today called Pentamidine. It was to be given through an I.V. and could cause some side effects like nausea. Parker did well with the new antibiotic. He did vomit 90 minutes into the infusion but was able to complete the antibotic. At the same time the I.V. was being given to Parker, some blood was taken to get the information they needed to administer the PEG-ADA in the upcoming weeks. From the blood work done today, we did notice that Parker's neutriphils increased slightly since coming off the Septra.

Unfortunately, Parker was unable to supply enough blood from his small veins for all the of the tests that they needed to do. As a result, they will be taking more blood tomorrow. In addition to the antiobiotic that Parker receives as a precaution for PCP Pneumonia, he is regularly checked to see what his immuno globulin levels are; a form of B-cells. Parker is unable to produce B-cells but receives them through a transfusion whenever his levels decrease. Well, it appears that that time has come again and we anticipate that he will receive this transfusion tomorrow.

Nana is coming from Peterborough tomorrow for a few days. This should give my wife some needed rest over the next few days. It is much easier when you have someone in the room who can help you. Of course, Parker is also looking forward to spending some time with his Nana.

Sunday, April 16, 2006

Parker's Adventures with the Easter Turtle

Today was Parker's first holiday. So, I looked forward to seeing the pictures that my wife had taken while I was at home tending to my cold. I figured that I would see all kinds of pictures with him in a special Easter outfit. Maybe a bunny sleeper, or a shirt with some chocolate eggs on it? Reviewing the pictures very closely I noticed a big green reptile on his sleeper. Now, I am not sure if things have changed that much since I was child, but I don't remember any stories of The Easter Turtle hiding chocolate eggs for children to find on the morning of Easter. I suppose this is how new traditions arise.

When I first arived in the anti-room I noticed Parker sound asleep; however, it was not very long before he awoke to notice his friends on his mobile hanging above his head. After about a minute of inspecting his friends, insuring that they were all there he called for his mommy to pick him up. For the next 30 minutes I spent my time talking to Parker as he looked very attentively through the glass at his father on the other side. Now, I like to think that he remembers me but he seemed very content in his mothers arms.

On Monday, Parker will be starting on a new antibiotic. It was thought that the Septra that he was taking orally was causing his neutrophils (a type of white blood cell) to decrease in numbers. As a result, they have decided to try a different antibiotic (taken through an IV) as a precaution to PCP pneumonia. So for two to three hours tomorrow Parker will be on an IV as he recieves the medication. Parker will also be getting his blood work done to check his counts prior to the start of the IV. I do hope to see his neutrophil count return to normal since coming off the Septra.

Saturday, April 15, 2006

Even Gifted Kids Take a Break Once In a While

Everyone pretty much knows that I have my wife playing with Parker as much as she can while I am away from the hospital with this cold. Regularly, pictures are taken to show me what they have done recently. Parker has shown us all that he is a very strong and intelligent little boy. He has no problem raising his head up during 'tummy time' to scope around his room. Today, Parker showed us that if you are going to work hard, then you must take a break once in a while. The little monkey realised that if you put your hands under your chin, you can rest your head on them.

There was an article on the front page of the Peterborough Examiner this morning about Parker's battle with ADA. It was a wonderful article and I would like to thank the people at the Examiner for writing it. I also spoke with 980 Kruz yesterday, as they have also decided to let the people of Peterborough know about Parker. I have to say that the Peterborough area is full of very caring people, and it is so nice how they group together as a community to help others. My wife grew up in the Peterborough area and her parents have resided there for some time now.

Again, I want to thank everyone who comes to this site to learn about Severe Combined Immunodefiency and our family's dealings with it. I know that we are definately moving in the right direction with gene therapy. Although it currently looks like a cure to children who are adenosine deaminase deficient, the work done by these pioneers are going to be extremely important as we move toward a cure for diseases that affect a greater percent of the population like AIDs.

Friday, April 14, 2006

Eleven Pound Hurdle Reached!

I had gone to the hospital the past two days, but stayed outside the anti-room, peering at Parker through two panes of glass since I had felt a little under the weather. I went to sleep last night hoping that I would feel better when I awoke in the morning but sleep only seemed to make me feel worse. I knew I had caught a virus, and although I know my immune system could fight it, my son's would be oblivious to it. So I have spent the day at home.

I had been counting down the days until the Easter weekend since I was going to be able to spend four full days with my son. I can't even begin to express the sadness that I feel knowing that I may not be able to see Parker over my long weekend. I know that my wife was also looking forward to me being there with him as it makes it easier when there are two people in the isolation room. It is very hard to do this job by yourself, especially since he is starting to get so heavy.

It took only 14 days for Parker to gain his next pound. If I recall, it was April first that I had written about Parker finally reaching 10 pounds. We were so sure that yesterday would have been the day, but it ended up taking an extra day. I guess there was no surprise that he not only gained the 7th of an ounce he needed to reach 11 pounds but actually gained 3.2 ounces in the past 24 hours to reach 11 pounds, 2.5 ounces. Why is that no surprise you may ask? Well, the little monkey ate over 700 mL of formula today. His Nonna and mommy have that magic touch when it comes to feeding him.

Thank you to everyone who has been leaving comments on the blog for my wife and I to read. We look forward to reading what you have written about Parker and knowing how much people care about him.

Thursday, April 13, 2006

Play Time Is Just Not the Same

I have felt a little under the weather the past couple of days. Now, I don't normally complain about feeling sick but it has kept me from being able to play with Parker. Even with all the precautions that are taken before we go into Parker's room, the risk of passing on what I may have to him is far too great. So, I watch my wife from outside the room as she plays with our son the way I normally would if I were with him.

Now, I am unsure if she thinks I don't trust her to get Parker's exercises done, but my wife has now gotten in to the habit of taking pictures of the little monkey's play time to show me. I am pretty sure that his favourite kind of play is his time with his mobile. Every day he looks more excited as he plays with it. I am so sure that he has convinced himself that these little creatures hanging from the mobile are genuinely his friends. Religiously, Parker's little friends fly by, and as they come closer to his body they swoop down toward him. Each time, he throws his hands toward them, trying to reach out and swat them. Each time he misses. Each time he laughes. I don't try and understand what it is that he finds so amusing with his three friends. I am just glad that he has something that makes him laugh and smile each time he does it.

Now, we were both hoping that Parker hit the magic 5 kg (11 lbs) mark today, but it was not meant to be. Parker remained 0.7 ounces short (20 grams) of the mark. My wife had the camera all ready to record the historical event. Alas, we shall have to wait another day.

I better try and get some sleep. If I am not better tomorrow I will not get to play with my son. And I know that play time is just not the same if Parker's daddy is left only watching from behind the glass doors.

Wednesday, April 12, 2006

Viva Italia!

A couple of people have now mentioned to me that in English the name Aiuti means to help. That is exactly what my wife and I have decided to ask Dr. Aiuti to do, to help our son. I had previously mentioned that I thought our meeting went very well yesterday and that we felt very positive after speaking with Dr. Aiuti. After spending the night discussing our possible treatment options we came to the agreement that Italy was the right solution to our son's problem.

We have now given the hospital the okay to start Parker on PEG-ADA so that he has a sufficient amount of BM CD34+ cells when it is time to extract them. We are going through the process of filling out our Trillium Drug Plan application so that it will not cost us $125,000 US/year for the medication.

I have done some research and I cannot confirm this yet, but Parker may be the first Canadian to have genetic therapy done. We always knew that the little guy was going to be a famous Canadian but we did not know he was going to make medical history.

The time we will spend in Italy will be anywhere from four to six months, starting in October of 2006. Now, to be honest I was never that enthusiastic about doing any fundraising but there is a time to put your pride aside and do what is best for your family. That said, my wife has been working with a woman in regards to fundraising. She was the woman that gave my wife the idea of putting me on CFRB 1010 last week and has now suggested going on Breakfast Television. So if all goes well, you may see me on CityTV one morning, talking about Parker, ADA and Gene Therapy.

Since so many people have asked us about fundraising, my wife has set up a charitable account that can be accessed at all TD Canada Trust branches across Canada under Parker's name with the account number 0590 6267228.

Parker, my wife and I truly appreciate the support and generosity everyone has given us. We could not have gotten this far without your help. It is definately a long battle ahead of us. But the three of us are ready for anything that comes our way.

Viva Italia!