Together Again

When Parker went into isolation we were told that he was not allowed to have fuzzy, stuffed animals. Apparently they are a breeding ground for germs. Before going to isolation Parker had quite a few friends that were stuffed animals. They had spent quite a bit of time together on the General Paedeatric Unit (7D). Daddy had even made some movies with his friends and Parker. It not only entertained Parker but everyone that walked by his room. But of all of those friends, there was one that had spent the most time with Parker. One that had been there right from the beginning. Parker's best friend, Monkey.

Today, I decided that after cleaning Monkey thoroughly the two could have a reunion. Now, at seven weeks of age, there is not too much Parker was able to do with his friend. Grabbing and holding objects was not one of Parker's strengths. Now that Parker is coming up to his fifth month he is able to do a whole lot more. Actually, I feel a little bad for Monkey since I think Parker had him in a head lock about to take a bite out of his head before I told them to play nice.

Up to now, this blog only contained images and stories of Parker after going into isolation but I thought I would post an image of Parker from Centennary in Scarborough with his friend Monkey.

Now, the Toronto Star had done two excellent articles on Parker but recently the Peterborough Examiner and the Correire Canadese also did wonderful articles. Well, I am guessing the Canadese did as my Italian consists of me throwing each word into an italian-to-english translator. You can imagine how it may not exactly come out as it was intended. That said, it gives me something in Italian to read each day. Something that I have to do if I am going to be fluent in Italian by the time we go to Milano.

First Trip Back To Sick Kids

Now, I know when you read the title you may have been a little taken a back but you shouldn't be. Parker must return to Sick Kids twice a week for his PEG-ADA injection. Tuesday is the first of the two and Friday will be the second day he goes each week. In addition, he will also have his "Clinic Day" on Friday. That will mean he will get his blood taken to see how his numbers are. I am not completely sure if another flow cytometry test will be done with that sample but I know they will at least check his neutrophil levels. Recall that Parker was neutropenic for a while and it was suspected that the Septra was causing it. Parker is again on Septra so his neutophil numbers are to be monitored extremely closely. Neutropenic children are exempted from taking part in the gene therapy trial.

Our trip to the hospital went better than I had expected. We were definately a little anxious returning to the place that we had spent the past three months, but Parker took it in stride. We stopped by 8B to see the nurses and say thank you and then went down to Clinic 9 where Parker had his ADAGEN injection. Four-fifth of a millilitre of ADAGEN Parker took in his right leg. Right leg on Tuesdays and left leg on Fridays. The poor little guy did not enjoy it one bit. I sat there watching as my wife held little Parker's arms, someone else held his legs and then when he was steady the nurse gave him the injection. He looked so happy lying there, not knowing what was to come next. Then, as I sat there in the chair watching my little man, I saw it in his eyes. He looked at me wondering why I was letting them do this to him. And then, he began to cry.

As soon they were done, my wife grabbed her little boy and hugged him as close to her as she could. Then, when he would not stop crying she gave him to me and within a couple of seconds he was lauging at his mommy while his daddy held him. It was the first time I was present while he got his enzyme injection. I told them that he may have been crying, but he is definately much braver than his daddy who would have started crying before they started.

We are still working on getting Parker into a routine. He went down tonight just after eight o'clock. He was so tired, but again had a very difficult time falling asleep. Now that he is a sleep, he should stay that way until at least five tomorrow morning.

My wife and I would again like to thank everyone who regularly visits our site to read about our little warrior. Parker has become known as the little fighter and it will be that fighting spirit that will get him through this battle victorious.

First Family Walk

One thing we were never able to do when we were in isolation was take Parker for a walk in his stroller. Today, we did that for the first time. Parker was not too thrilled about it at the beginning but once he fell asleep he enjoyed it quite a bit. Now, we do live in a newly developed area so there is construction going on behind us. With Parker having some proteinosis in his lungs it is important that we do not agrivate his lungs in any way. As a result, we went to my parent's neighbourhood which is established and has no construction going on.

Parker is extremely close to rolling over from his back to his front. I am pretty sure it is going to happen one day this week. He is working coordinating his lower body movement with his upper body. He gets both arms over his body but does not always use his legs to give him some momentum. I would try and explain to him what to do but I am pretty sure he would not understand. So I now lie on my back beside him and show him what to do. I think it is working. Well, I am not sure if it is working but he finds it funny!

Parker had a new personal best for food consumed today. He polished off over 1200 mL. We purchased a bottle steriliser today so that we can be sure that he does not have any germs on his bottles or nipples or some of his smaller plastic toys.

Parker has become a little difficult when it comes to going to bed. Once he falls asleep he is out for quite a few hours but getting him to sleep is a different story. I am not sure if he is worried that someone is going to steal his exersaucer and backyardigans DVD when he is a sleep but he does not like going to bed without a fight the past couple of nights. I think he is just overtired. It is not like he takes major naps during the day. He slept for two hours this afternoon, as did daddy. Hopefully, he will fall asleep soon.

It is so weird not knowing how much Parker weighs. When I check my graph of Parker's weight I would have him at 15 pounds today and 15 pounds and 4 ounces on Friday when he goes to clinic. It will not be the same scale on Friday, nor the same time he normally got weighed but it should not make too much of a difference. Maybe a couple of ounces.

A Great First Weekend

Things are starting to feel a little bit normal since coming home. We are trying to get into a routine throughout the day but that is going to take a little bit of time still. At the hospital, Parker would normally be down to sleep by 7:30pm but we seem to be having a little bit of difficulty with that since coming home. It is now 8:20pm and the little guy is just getting to sleep.

We have been trying different kinds of nipples and bottles the past couple of days. We had bought the Playtex Dropins when he was first born, but they make it difficult to keep track of how much he is eating since the bag is not meant to let air in with the formula. As he drinks, the bag changes shape to accommodate how much formula is left. When he is done, there is no easy way to account for how much is left in the bag. Opening the bottle to pour out the remaining formula so it may be measured usually results in formula all over the floor. We have also tried the Avent bottles and nipples. These bottles are much better but Parker is not too crazy about the nipple. He is used to the Enfamil nipples that are individually wrapped (sterile) from the hospital. I think we will try and contact Enfamil to see how we can get the same nipples for Parker. He likes them, they fit on a standard bottle, and they are sterile.

Regardless, Parker has continued to eat extremely well since coming home. Yesterday, Parker had his biggest feed to date. He had 1145 mL. For those of you who are not much for metric, that would be just over 38 ounces. I am not sure if that is a lot for a four and a half month old but it is very impressive in my books. I have created a Excel sheet to track his feedings so that we may take them to clinic so they are well informed of his eating habits. We are also looking forward to seeing how much the little monkey weighs when we go to clinic on Friday. We are used to weighing him each day, but without a baby scale it becomes quite difficult. Finally, we have purchased an instant read thermometer. It is important to monitor his temperature so that we can keep on top of any fever that may occur. Parker's temperature is taken when he gets up in the morning and when he goes to bed in the evening.

Many of you will remember the video of Parker laughing at his monitor. Well, that little monitor has nothing on the television at home. Whenever we place Parker in his exersaucer in front of the television while the Backyardigans are on, he becomes mesmorised. I will definitely not let my little boy become a television junkie but a little T.V. never hurt.

I think the greatest thing we had gotten for Parker before we knew he was sick was his exersaucer. He can keep himself occupied for a good twenty minutes in that thing. He will move around in a circle checking out the different things on it. He has even learned how some of the toys on it work, and he does have his favourites. He always moves around the saucer until he finds his spinning rattles.

Our first weekend is coming to a close, and we are so grateful of every second that we have had together. We look forward to spending our first week with him as well.

It's Nice To Be Home

It has been so nice being home with Parker since leaving the hospital yesterday morning. Parker has definitely enjoyed himself as well. We played for quite some time yesterday. There were so many things for him to do here that he was unable to do in his isolation room. Not so much that he was not allowed to do them there, but the room was small, and there is only so much you could keep in it.

Parker loves his exersaucer. The only problem is that he is a little short for his age because of the ADA deficiency so his feet dangle about two inches from the ground. We made sure that we placed a pad under his feet so that he could rest his feet flat on it. The occupational therapist told us it was important that he not be on his tippie-toes when standing in his exersaucer as it will cause problems when they begin to start to learn how to walk.

The Toronto Star did another wonderful article about Parker in today's Saturday Star. It is my understanding that it was slotted for the front page until about nine last night when it got bumped for the terrorism bust. It did however make page four and we are very thankful to Elaine Carey for again writing such a wonderful article. If you missed the article you can see it online here.

We were worried last night that Parker may have some difficulty sleeping but that was not the case at all. The nurses at Sick Kid's had told us that he was sleeping through the night but we had not witnessed since we were never there. Parker went down for bed last night around 730pm and he did not wake until my wife woke him at 6am. He fed, and he returned to sleep for another ninety minutes. The funny thing is that my wife got up every hour through the night to see him sleeping in his crib. I know the past four and a half months were difficult for me but I cannot imagine what they were like for her. I am so happy that she gets to hold her little boy in her arms.

Parker has also taken two naps today. My wife says that is normal, so I will be happy with that. It has given us time to continue cleaning the house. I know some people may think it is overkill to clean the house so thoroughly all the time but the last thing we want is our little boy to get sick as we wait for Italy. So, we continue to go through containers of Lysol wipes and antibacterial soap. I have mentioned it to a few people already; our house was always very tidy but now it is very clean. On first inspection there is no difference visually but if you look a little closer you can definitely see why we try and keep the house so clean now.

I must say that there is one thing I completely forgot about since Parker has been in isolation. You see when you where a mask over your mouth and nose you lose all sense of smell. I forgot what Parker smelled like. It is weird because I remember I went home to sleep one night while Tracy stayed with Parker at Sick Kid's before he was in isolation and I had a stuffed animal that he always lay with in his crib. I held it close to me all night because the smell reminded me of my baby. As I hold my son close to me as we dance around the house I notice there is not a single sensation that holds up to the smell of my little baby boy.

What a Wonderful Feeling

I cannot begin to express the happiness and joy that my wife and I are feeling today. Parker is just over four and a half months old and he has spent almost all of it in the hospital. We were so elated when we got to walk our little boy out of the isolation unit in his stroller this morning at 11:30am.

I am not sure if Parker knew what was happening today, but the little guy never stopped smiling. When we placed him in his car seat and then in his stroller, he didn't shed a single a tear. He sat there in his stroller, under his rain sheild in complete astonishment of the outside world. The whole ride home Parker stared out the window as we passed others cars, and green fields holding his moms hand!

When we did return home, it was like Parker never left. He did not seem startled by his new surroundings. He got to play in his exersaucer and his gymnie. He got to do this while his mother and father played with him, without the sterile gowns we had become accustomed to wearing whenever we were with him.

Parker's appetite also has not diminished since being home. Parker had no problem finishing off 220 mL of Nestle Good Start Formula. For today, we used the ready made and he enjoyed it quite a bit.

We finally got the little monkey to bed fifteen minutes ago. He was not too keen on sleeping today as he got used to his surroundings. We tried to make his crib as similar to the hospital as we could; so his friends are dangling above his head as we speak.

Some more exciting news. The Toronto Star has decided to continue following Parker's battle with ADA deficient SCID and as a result will be writing another story about him for tomorrow's Saturday Star. We appreciate all the work the Toronto Star has put into this.

Many people have asked me if I plan on keeping the blog up-to-date now that Parker is home awaiting his treatment in Italy. The answer is a definate yes. The blog will continue to chronicle Parker's battle with this disease. So please come back each day to see how my little boy is doing.

One More Sleep!

It is five thirty on Thursday afternoon and we are about to head home for the night as we still have quite a bit to do before our little boy comes home tomorrow. We have spent the last couple of days cleaning and should have the house spottless by the time he gets home tomorrow, early afternoon. Although we are extremely excited to go home tomorrow, we would definately be lying if we said we were not at least a little bit anxious.

Parker has been at the hospital almost his whole life. With the help of the Hospital for Sick's Kid's in Toronto we have taken great lengths to limit his chances of catching any infections. When Parker goes home tomorrow we will have to build a routine with strict rules to make sure that he continues to stay healthy as we await our trip to Italy near the end of October.

Parker's immune system is much better off than it was when he was born, but it not perfect yet. The enzyme injections that he has received the past month have allowed his B-cells, and NK cells to normalize in regards to numbers. Parker's neutrophil levels are also normal, as well as many other types of cells he has that fight infection and bacteria. That said, his T-cell numbers are still low. These fight viruses and fungi. This is why strict precautions will still have to be followed. We are expecting his T-cells to increase in the next while but at this point in time they are still low.

My wife and I would like to thank all the wonderful people we have had a chance to meet and deal with at the Hospital for Sick Children in Toronto. The immunology team has been absolutely wonderful. Without them, we never would have caught this disease as early as we did. The nursing staff on 7D (General Paedeatrics) and 8B (Bone Marrow/Reverse Isolation) have been extremely caring and helpful toward our son. The people that have gone into this profession are never thanked enough, so I would like to let them know we are so appreciative of them. I would like to make a special thank you to Parker's favourite doctor, Dr. Sean. Parker enjoyed his visit with you each day, you always made him laugh. My wife and I are so very appreciative of your patience with us. We always had so many questions and you always took the time to answer them.

During our stay we got to meet many parents who are also going through some very difficult times. My heart goes out to every one of them and our thoughts and prayers are with you all.

We would like to thank our families. I know it has been extremely difficult for you as we have become very isolated as a result of this disease. We look forward to spending more time with you in the upcoming months. We love you very much.

Lastly, I would like to thank my wife. Without her, Parker would not be the little boy he is today. Although she may have worried if he would smile at her because he did not see hers, there is no one he smiles bigger for then his mom. Parker, at four and a half months old has already become a momma's boy.

Chapter One Coming to a Close

My apologies for not writing yesterday. My wife and I were celebrating. Our battle against this disease is a long and draining one but yesterday we got some news to make it a little easier. Parker's cell marker test came back and as a result of the numbers we have been given the okay to go home on Friday.

As a result of being on the ADAGEN for the past month, Parker's B-cells and NK-cells are at a normal level. Although he is still quite low in the T-cell numbers they did increase from 39 to 49 in regards to the CD4+ and 15 to 16 for his CD8+. We always knew that these would take the longest to increase and they still have quite a bit to go but this is something they can do while we are at home. Home is where we will be for the next four and half months as we await the trial in Italy.

To say they that we are happy that we finally get to take our little boy home is an understatement. My wife danced in the room with Parker for over two hours after she found out the news.

I thought to myself yesterday, what was it that I was really looking forward to doing with Parker when we got home? I am looking forward to teaching Parker how to roll over by showing him myself as we do tummy time together.

When I asked my wife the same question, she said that she most looks forward to being able to snuggle him without wearing protective gear. She wants to feel his skin and touch his hair without having to wear sterile green gloves.

We have a lot to do in the next couple of days to get the house ready for his return, like cleaning the carpet so we can do tummy time.

Big Day Tomorrow!

Parker has a big day ahead of him tomorrow as he is scheduled for his next enzyme injection. He used to get the injections on Mondays and Thursdays, but they have recently been changed to Tuesday and Fridays. This will mean one less visit to Sick Kid's for us as since clinic is on on Friday's. Clinic is when Parker would get his CBC done to check his blood counts each week.

In addition to getting his enzyme injection, Parker will be giving 10 ccs of blood so that the flow cytometry test may be repeated. Recall that this test will check to see how many of the different types of T-cells he has. The last test revealed that Parker was normal for his B-cells and NK-cells, but was still below the norm for CD4+ and CD8+ cells. Being on PEG will never restore these to the normal range but we do want to see a trend illustrating that they are increasing. I am unsure if we are only looking for this particular trend or if we need them to reach a specific number before we may go home for the summer, as we await a journey to Italy. The last test revealed that Parker's CD4+ cells had reached 39 from 9 when we were admitted and his CD8+ cells had reached 15 from 1 when we were admitted. The same blood sample will also be used to perform his CBC (complete blood count).

Lastly, Parker will be reintroduced to Septra as a precaution to PCP pneumonia. He was on Septra (orally) but was taken off of it when he became neutropenic. He then began Pentamidine (IV) once every two weeks in its place, and as a result, Parker is no longer neutropenic. Now that we are closer to going home, they would like to try the Septra again since it is much better in acting as a deterant to PCP. Although we are anxious about the switch back, it will be monitored very closely and stopped if his neutrophil counts decrease. The fact that Parker will not need an IV is also reassuring.

I did an interview with the Corriere Canadese, the Canadian version of the Italian newspaper. I am not sure when the article will come out, but it will be in Italian. No problem here. I am working on my Italian each and every day.

Parker is doing very well. He has taken to his regularly concentrated formula and has continued to grow. I had the little guy on his tummy for a good five minutes before I picked him up and gave him a big hug. The occupational therapist also came by today. She was very pleased with his accomplishments. Parker is very close to rolling over on his own (back to tummy) and must now work on pushing up with his arms when he is on his tummy. I know it is a lot of work, but a few push ups never hurt anyone!

Our New Friends

Parker and I have a new set of friends and they are called the Backyardigans. A friend from school whose daughter loves the Backyardigans bought Parker a DVD with four epsiodes on it. Parker and daddy cannot get enough of them. I think it is meant for children a little older than Parker but the bright colours and catchy music is enough to keep our eyes glued to the television. If you have children and have never heard of the Backyardigans, check them out on Nick, Jr.

The past couple of days, mommy and daddy have tried to do a little work around the house in anticipation of going home some time in June. Yesterday, Parker's Nonna was kind enough to stay most of the day and hang out with Parker while we cleaned up around the house. Today, the nurses on 8B were kind enough to play with our little man until we got were just after noon. Again, we tried to get as much done as we could at the house today as it will make it easier when do get the nod to take him home. Parker sure was happy to see us today and boy were we glad to see him.

I hope that everyone had a great weekend. Please come back tomorrow to see how Parker and his family is doing!

A Lot Can Happen In a Single Day

It has been almost 36 hours since I last wrote and alot has happened since then. I guess I will start with what everyone wants to know. How were the results of the T and B cell markers? It took a while since the results needed to be reviewed by the appropriate doctors but they finally did make their way to us by early afternoon. Parker will have to remain in isolation for at least another week as his T-cell numbers are not high enough to go home. As a result of the PEG-ADA injections his NK-cells and B-cells have increased quite a bit. Unfortunately his T-cells have not. Yes they are higher than they were when we came to Sick Kid's but they are extremely low still. When Parker was admitted he had 9 CD4+ cells and 1 CD8+ cells. He is now at 39 CD4+ and 15 CD8+ cells. These are the TH and TC cells respectively. The normal range is much higher than this. To give you an idea, people who are HIV+ have their CD4+ attacked and depleted. When they finally do get below 200 CD4+ cells they have to take medication for their HIV. Again, Parker currently has 39 CD4+.

What does this mean? It means we are not going home next week. The test will be repeated next week to see if his numbers have continued to increase or they remain similar to what the test revealed today. Apparently his results were expected and are not concerning. Let's just pray that his numbers do rise when they do the next flow cytometry test. That said, we are pleased that his NK and B cell numbers did have a much more dramatic rise.

I have mentioned quite a few times in the past that Parker's weight has increased quite dramatically since coming to isolation. What I have failed to mention is that his head circumference has been doing the same. Parker was born at the 50th percentile for his head circumference and when his measurements were done yesterday we were told that he is now in the 90th percentile. I figured it is better to have a big head then one that is too small. Seen the movie Beetlejuice? Well, since his head has grown so quickly and not remained at the 50th percentile an ultra sound of his brain was done to see if there was something abnormal about it. Parker slept right through the ultra sound like a good boy. The test came back by the end of the day and displayed no abnormalities in his brain. To be honest, I have not been charting head circumferences but I did just recently take a look at where Parker is on the chart and it reads between the 55th and 60th percentile for boys. If you look at where his head circumference is for girls it is the 90th percentile.

Parker has also switched formulas again. I had mentioned that he had moved to the 3300 KJ/L formula a couple of days ago. Yesterday, he moved to regularly concentrated formular (2800 KJ/L) with sugar added to increase the calories to 3300 KJ/L. By being on concentrated formula, he is receiving increased amounts of the different vitamins and minerals as well as calories. Parker's CBCs have been coming back with elevated values for calcium and magnesium and most recently potassium. By using the normally concentrated formula with sugar, Parker is receiving the regular amount of vitamins and minerals and we hope it will bring his electrolytes (calcium, magnesium, and potassium) into the normal range. Parker spent Thursday on this new formula. Recently, I have spoken with the dietician and we have decided that Parker does not need to continue to grow at 35+ grams/day and that normal formula without glucose will suffice. Parker started normally concentrated formula today.

So, alot has happened in the past 36 hours. Maybe I need to write more often? Actually, once a day should be fine. Thank you again to everyone who has been visiting this site and supporting our little boy in his fight against ADA deficiency causing SCID. Come back tomorrow to see what the next 24 hours bring.

A Good Day Had By All!

We are still waiting for the results of the T and B cell marker test Parker had yesterday to come back. The test does not take a long time to complete but Wednesday is an extremely busy day in the lab so it will most likely be later today that we receive the results for this test.

Parker's CBC (complete blood count) did come back yesterday and for the first time in his life, Parker's lymphocytes are in the normal range. Depending on what source I look at I get a different value for the range. Regardless, all the sources place Parker lymphocyte count in the normal range.

Now, although we are hoping for some good news in regards to his marker test there was a SCID (X-linked) family that did have something absolutely wondeful happen to them. They went home after a successful bone marrow transplant. I can only imagine what it feels like to go through all of this for 325 days and then be able to finally go home with your healthy child. We are so happy for this family.

Parker's occupational therapist is scheduled to see him this afternoon. I am hoping that they are going to be impressed with everything he has accomplished in the past week. Parker now, will try and swipe at things he wants. I feel sorry for his little friends on his mobile because it will not be long before he can actually reach out and grab them with two hands. Parker also now will hold his rattle whenever I touch it against the back of his hands. He will even look at it and shake it. Usually after about 30 seconds he throws it and if I am lucky I catch it before it hits the ground. Otherwise he does not get to play with it until it gets sanitized.

What I am most proud about is how well he is doing with his 'tummy time'. Yesterday he stayed on his tummy for a good five minutes before I tipped him over to his back. He then tried to get back to his tummy almost instantaneously. With a little help from dad, he was there. He proceeded to stay there for another five minutes. This game went on for about 20 minutes. Parker does not throw his hands to his sides anymore either. If one does back, he puts his in front of himself almost right away. Way to go little boy!

T and B Cell Marker Test To Be Done Today

Parker has now received six injections of ADAGEN (PEG-ADA). We were all very surprised at how quickly Parker's numbers increased once he started the enzyme injections. His first complete blood count (CBC) after starting the PEG-ADA came back with an increase in his neutrophils, total white blood cells and lymphocytes. Each subsequent test displayed a continued rise in these numbers. I had mentioned earlier that once Parker's numbers reach a specific level he will be able to come home until we go to Italy. Unfortunately, his numbers will not be that high forever if we choose to stay on the ADAGEN and not go to Italy to take part in the Gene Therapy trial. As I have mentioned before, to be accepted into the study in Italy, the patient must remain on PEG-ADA for six months prior to taking part in the study.

The lymphocytes consist mainly of T-cells and B-cells and are made in the bone marrow. For Parker's form of SCID both the T-cells and B-cells as well as the NK cells are killed off by the toxins in his body. The T-cells are named that because they are matured in the thymus gland and then become one of three different types of T-cells. The B-cell mature in the bone marrow and then eventually secrete different antibodies in the presense of specific antigens (something that stimulates an immune response).

Now that Parker has started the PEG-ADA his lymphocytes have increased in numbers. Since the different lymphocytes look very similar under a microscope it is close to impossible to distinguish between the different T-cells and B-cells in a blood smear. To find out how many of the different lymphocytes Parker does have they do a test using flow cytometry. Parker is having this test completed today. If Parker has a substantial number of T-cells in his blood stream we will be able to take him shortly.

The flow cytometry test works as follows. The different cells in your body have specific markers or receptors on them. This test will check to see what receptors are present on a cell and record the number of cells with a particular receptor. How will be explained in the upcoming paragraphs. The next part may be a little scientific but a little bit of science never hurt anyone.

The three types of T-cells are identified by the type of receptor they contain. Tc are incharge of destroying infected cells and contain the receptor CD8. TH are called helper T-cells and aid the rest of the immune system in fighting infection and contains the receptor CD4. Finally, regulatory T-cells aid in the supression of the immune system. These T-cells contain two receptors (surface proteins), CD4 and CD25. B-cells contain the surface protein CD20. These receptors allow for specific cells to bind to them.

The sample of cells that they take from Parker will then be mixed with specific antigens that bind to the different receptors. The antigens are coloured with specific dyes so that the receptors can be identified by the colours of the antigens that have bound to the receptors.

These cells (Parker's blood sample mixed with coloured antigens) are then places in a fluid which moves with the fluid past a light source of a specific frequency. Each cell in the sample is hit by the light source and absorbs some of the light of the controlled frequency. Almost spontaneously the cell re-admits lights of a different frequency. The frequency of light that is absorbed depends on the colour of the dye used on the antigens that are bound to the receptors.

The flow cytometry test keeps track of the number of times each specific wave of light for a particular frequency was emmitted by a cell. By looking at the number of each admitted light wave, you can determine the number of cells of a particular type that are present in the sample. We are hoping to find quite a few T-cells as well as B-cells in Parker's blood sample.

Parker Takes It Like a Man!

Parker had his sixth injection of ADAGEN this morning. Recall that the purpose of receiving ADAGEN (PEG-ADA) is to give Parker the enzyme that he is missing. Parker must be on enzyme therapy for six months prior to being part of the Italian study. The injection takes place every Tuesday and Friday morning in the muscle in his inner thigh. He normally cries for about 10 minutes afterwards but once he realises his mommy is there he feels so much better. Mommy usually waits in the anti-room while the injection is being done and once it is complete she runs in to console her little boy. Parker is receiving a test tomorrow to see how well his lymphocytes are working in his body since starting the enzyme replacement therapy.

My wife and I are so overwhelmed by the response we have gotten from people that read the article in the star or saw the news on CityPulse at 6. A majority of the visitors we have had in the past few days have come from pulse24.com or thestar.com. We have received emails from friends whom we have not spoken with in quite some time expressing their concern with what Parker and his parents have been going through. My wife and I can not thank everyone enough for their thoughts and prayers.

Thank you again for everyone who has been visiting Parker's site. Please come back daily to see how our little boy is doing and to learn more about his disease caused by a single faulty gene stored on chromosome 20.

Fourteen Pounds!

Since moving to his isolation room in March, Parker has remained infection free. As a result of feeling better, he has been eating up a storm. When Parker was born, he was in the 25th percentile for his weight. This means that at birth he weighs more than 25% of all babies born. Babies weights are charted on a standard graph against average weights of babies for specific ages. By looking at the chart you will notice that there are lines that display the average weight for babies through the first three years at a specific percentile. Parker was born at 6 pounds and 13 ounces. That places him around the 25th percentile. Generally, a baby should gain weight at a rate that keeps them at the percentile in which they were born, assuming everything else is normal.

Generally, SCIDs have difficulty gaining weight since they spend a good portion of their time dealing with an infection and not feeling very well. As you can imagine, when a baby does not feel well, they do not want to eat very much. For Parker's form of SCID, ADA deficiency, the primary problem is an enzyme not functioning and as a result a toxin dATP accumulates in the body. Those of you that remember high school biology will remember that ATP has to do with energy. The toxins in Parker's body cause his metabolism to increase. This means that he burns calories at a greater rate than the average baby. A test was done on Parker when he first came to isolation that showed he burned calories at a rate of 1.3 times greater than the average child his age. That said, he needs more calories in his diet to gain weight at a rate that would keep him at the 25th percentile that he was born at.

Without knowing that Parker had ADA deficiency for the first six weeks of his life, he was not getting enough calories to gain weight. When we came to isolation, Parker had dropped to the from the 25th percentile to the 3rd percentile for his weight, a drop of 22%.

After helping Parker fight the bacteria they found in his lungs after completing his lavage in early March, he began to feel and eat better. We then changed Parker's formula to Nestle Good Start which seemed to look alot more like milk and as a result, he began to devour his formula. Lastly, his dietician changed the concentration of his formula to reflect the fact that he was burning calories at a much quicker rate. His formula was changed from 2900 KJ/L to 3800 KJ/L. The formula was slightly thicker but Parker did not seem to mind one bit.

Since coming to isolation Parker's daily weigh-ins have been recorded. Parker has been gaining weight at just over an ounce each day. I have been plotting the data in Excel so that I could obtain a linear regression since we began keeping track of his weight.

Parker weighed in at 14 pounds yesterday. This places him just over the 25th percentile. We are so happy that all of the work we have been doing with Parker here at the hospital has continued to pay off. The nurses and doctors do an amazing job keeping him healthy. The PSAs (cleaners) do a spectacular job cleaning his room each morning, sanitizing every last inch. Thank you to everone who has helped Parker finally reach his goal weight. As a result of reaching the 25th percentile, and so that he does not continue to gain weight so quickly (babies generally gain weight at a lesser rate once they reach four months) his formula is now concentrated at 3300 KJ/L.

My wife and I would like to thank everyone at CHUM and CityTV for doing an excellent story on Parker last night on CityPulse at 6 and 11. You can check out their website here. There is a link to the actual interview that City did on that page. Thank you to everyone who has visited our site in the past couple of days. Please come back regularly to see how our little boy is doing.

Who Says You Can't Have Fun In a Bubble?

Yesterday was another excellent day for Parker. Since it was his mommy's birthday yesterday we decided to let mom go out for a little bit and visit with her best friend. Parker and daddy had a great couple of hours playing with his gymnie, sitting in his Bumbo by the window and working on Parker's 'tummy time'.

I decided that the best way for Parker to get used to what the outside world looks like was to have him sit down and take a look at it. So, I cleared all the space by our window, placed his Bumbo chair on the sill and let him stare out at the world. He loved seeing the birds fly by. I don't know what he was thinking as he sat there but he definately seemed to be enjoying himself.

Now, this is the third time that mommy has left for a few hours with daddy taking care of the baby and then return to Parker without his pants and socks on. To be honest, Parker did have one sock on; but, apparently that is not good enough. I just find it easier to do 'tummy time' without his pants on. Well, the rolling over portion of 'tummy time'.

On the topic of 'tummy time', Parker has now decided that when he no longer wants to do his 'tummy time' homework he just places his arms by his sides and does a face plant. Parker has fooled mommy with that one, but he has to be a little more resourceful with his dad. I realised that he does not really like having his hands by his sides and as a result gets angry and then will put one arm back in front and then roll himself over to his back. A little bit of clapping on daddy or mommy's part afterwards lets him know that he has done something special.

Parker had a complete laughing fit yesterday when we were playing peek-a-boo with his oxygen saturation monitor. I have absolutely no idea what he finds so amusing with the monitor (it is turned off) but he was cracking up yesterday. If you check the recent videos on the side there is one were he is laughing at his monitor.

I would like to take the time to thank everyone who visited our site yesterday. We had over 4000 hits which was very exciting. Thank you so much to The Toronto Star and Elaine Carey (medical reporter) who did such an excellent job with the article. Please visit our site often to see how the little monkey is doing. We would also like to thank Dr. Aiutu for speaking with the Toronto Star about his work in gene therapy. He is truly a remarkable man. I am sure that Parker would like to say a special thank you to his nurses on the floor who are truly amazing. He loves playing with them whenever he gets a chance to.

Lastly, my wife and I are doing an interview today with CityTV so check out City for our story. I was told it would air in the 6pm news tonight.

Thank You to the Toronto Star.

I have just read the article by the Toronto Star at thestar.com and we are very pleased with the work they did with the article. Elaine Carey, the medical reporter at the star did an excellent job researching the disease and we are so pleased with the number of people that will read the article and visit our site as a result. I had mentioned yesterday at the hospital that the difference between when a doctor writes a medical paper about the disease and when a major newspaper or someone who is experiencing the disease writes about the disease is who reads the work. Doctors write for other doctors to read. The latter write for the general public, and in this case I write for parents to read about the disease. So we are so pleased with the attention that this devestating disease will get today.

With such an in depth article there are only some very small additions that I would like to make. Parker resides on the reverse isolation unit which is isolated from the rest of the hospital. There are very few people that have access to the unit. Parker does stay in a reverse isolation room that is filtered regularly while on 8B; however, not all the rooms on the unit have a bank of filters. When a child undergoes a bone marrow transplant they reside in a reverse isolation room until their counts increase. Once that happens they move to a normal (but very clean) room on the floor. This is only the case for the children without SCID. Children with SCID must remain in their isolation room until they are discharged.

Parker is currently receiving enzyme replacement therapy by injecting the missing enzyme twice a week into his muscle. The idea behind this is to give Parker the enzyme that his body cannot produce so that the dATP does not run rampid in his body killing off his immune system. From my reading, this therapy works very well for two to three years but for some unknown reason the injections become less effective with time. For this reason we do not feel it is a viable final solution to ADA deficiency.

The treatment that we will be involved in in Italy will be covered by the telethon in Italy that is financing the study. While in Italy we will be put up in a residence similar to that of Ronald McDonald House here in Toronto. The expenses we will incur will be the result of not having any income for the next year while we try and help our son through this disease. As you can imagine there will be many expenses that need to be covered at home as well as additional expenses we will incur while living in a foreign country for an average of six months. We have no idea what the result will be with the gene therapy. We do know that we will have to return to Milan, Italy approximately four more times once the study has completed. If the therapy does not work, Parker would have to be placed back on PEG-ADA which is extremely expensive to say the least. We are not paying for the enzyme therapy at the moment but are not guaranteed anything in the future. It is all of the unknowns that make it very difficult to place a dollar amount on how much this battle with SCID will cost. We do know that we will get through it with the love and support we have gotten and continue to get from our families and friends.

Again we would like to thank the Toronto Star for all of their work with this article. We were so pleased after reading it this morning. I don't think we thank the nurses and doctors at Sick Kids in Toronto nearly enough. The work that they do there is truly remarkable.

Thank-you for taking the time to visit our site and learn more about this disease. We hope that everyone will continue to visit regularly to track Parker's progress as he beats this life threatening disease.

Stop the Press!

I had mentioned in an earlier post that we had done an interview with the Toronto Star about Parker's disease. After speaking with them the past few days we were told that it is to be slotted on the front page of tomorrow's Saturday Star. In addition, I think there is a related story about the Gene Therapy trial that Parker is going to be taking part in Italy. I was told that they did contact the doctor in Italy for that particular article. My wife and I are elated at the amount of awareness for adenosine deaminase deficiency this will have as well as Severe Combined Immuno Deficiency in general. We definately look forward to reading the story tomorrow morning.

As for my special little buddy? Parker is doing very well. He did have his injection of PEG-ADA this morning. He handled it very well. He usually gets some tylenol about 30 minutes before the injection to ease his pain a little bit. But, to be honest, having his mother hold him after the injection is definately the best pain relief for him.

Parker is definately enjoying his new formula. Actually, I am not sure if he enjoys it anymore than his old formula or if it just doesn't fill him up the same way. It seems to be alot like Chinese Food. He will eat alot and then a couple of hours later he is starving again. To be honest, we knew he was going to be eating more on the new, less concentrated formula. Why wouldn't he? Last time I checked a milk shake is definately more filling than a glass of milk. Parker is now having 180+ mL (6+ ounces) feeds. He is almost polishing off a litre of formula each day (900mL+). If you consider that his formula has 15% more calories than regular formula he is pretty much is having a litre of formula a day. As a result of having a more watery formula, he is receiving more fluid and uninating more frequently. This is something we wanted to see, as we all know the importantce of water in your diet.

It is Parker's mommy's birthday tomorrow so please make sure to wish her a happy birthday. I already know her birthday wish. So make sure to check www.thestar.com tomorrow morning for what we hope is a great story about SCID caused by an ADA deficiency.

Just the Facts, Mam.

I have decided that today's message will be much more brief then normally. I want to make sure that there is something for everyone to read as well as some pictures for people to see.

Parker has taken well to his new formula. He does drink quite a bit more of it; he drank 850 mL by the time we left for this evening. I am not sure if he is more gassy or he is teething but he did seem a little more cranky when we tried to put him to bed tonight.

Parker worked with his occupational therapist this afternoon. He did a fine job with her and my wife but I he needed a little encouragement over the phone so he would become more interested in the work they were trying to do. It is like I always say, "No SCID of mine is getting out of doing his homework". So, I told him over the phone that daddy said he had to work hard for the therapist. I am told that he did. If you check the recent videos I have added one with his workout today with the therapist.

Parker gained quite a bit of weight yesterday so I was not surprised when he was down 40 grams today. A correction, just like the stock market has done over the past few days.

What an Alert Little Boy!

I got to spend a portion of the morning with Parker today. We spent most of the time playing together. We again worked on strengthening his neck muscles by hanging out on his tummy. Parker can now spend a good three minutes on his tummy looking around before he gets cranky and wants to roll himself over on to his back. He does all of this without any support. We used to have to place pressure on his bum to reinforce that he needs to push his bum down to help his head up, but he no longer needs this.

We have now modified his gymni so that he can kick the wheel that spins around and plays music. Yesterday, he actually knocked his lobster right out of the socket on the gymni. No worries though. Daddy's quick reflexes was just quick enough as he caught the falling lobster before it plumetted to its death on the cold floor below.

Parker had his fourth injection of ADAGEN (PEG-ADA) today. Our tough little guy did very well. He was a little hungry afterwards but that is hardly surprising. I had mentioned that his formula was being "deconcentrated". He had his first full day of the new formula. Since five o'clock this morning he has already eaten over 800 mL of the new formula. Parker drinks it like water. Actually, compared to before it pretty much is water. Okay. Not really but he sure is hungry more often now.

My wife and I were a little worried that he would not gain weight on the new formula; however, he gained quite a bit today. Parker gained just shy of five ounces over the last day. I am guessing that alot of it has to do with the increased amount of liquid and will eventually correct itself.

What was also exciting was the Parker slept through the night for the first time last night. We put him down at 6:30 last night and he did not wake up until five this morning. He then ate and then went back to sleep.

My wife and I met with a wonderful reporter from The Toronto Star this morning. We are trying to get as many people familiar with Parker's disease as possible and I am sure The Star will do a wonderful story on him. I am unsure of the date it will appear in the paper but I expect it will be either Monday or Tuesday after the long weekend.

Now, I mentioned in the title that Parker is an alert little boy. In the past few days I have really noticed a difference in him. He is constantly wanting to play with his dad. Whenever I come to the sliding door of the anti-room he stops whatever he is doing (even eating) and smiles at me. Who would have thought that Parker would think all the hard work he does when he is with his dad was fun? Way to go little monkey!