When Life Gets You Down

People that knew me before Parker was born will attest that I have always been quite laid back. If something upset me I was pretty good to just let it go. Not to say that I have changed very much since Parker was born or since he was diagnosed with this horrific disease, but to be honest it does have its toll on you. Still, I am not one to complain much, and I do my best to not let petty things bother me, but that said, today I felt a little overwhelmed. I guess with each day that passes, as we battle with Parker to fight this disease, it is to be expected.

I can't say that I ever really thought what a parent has to go through on a daily basis before I had Parker. If I take that thought a little further, I can say that I definitely never imagined what it was like to be a parent of a child whose future was undetermined to the extent that my son's is. How could I have? Why would I have? But now, when I watch television shows like "Life's Little Miracles" on the "Life Channel", that shows families going through very similar things that we do, I sympathize with them.

Please don't get me wrong. I am not asking anyone to feel sorry for me or my family. People that know me will understand that that is the furthest thing from my mind. To be honest, almost right after Parker was diagnosed with this disease I decided that I should not sit and wonder why this had happened to us, but instead, why should it not? What makes someone so special that they are spared such a journey. So, with that, I take the cards that I have been dealt and I play them to the best of my ability.

But today, I am tired. I am tired of listening to people who do not know what it is like to go through what we do each day. I am tired of hearing that Parker's chance of survival is small from people who I don't know and who don't know my son. And I am tired of feeling guilty for watching my son as closely as I do.

I am not sure if anyone has heard the term 'institutionalized'? Many families who have spent an extended period of time in the hospital or other institution, take hospital life home with them. They have difficulty removing themselves from what they are used to. So I ask myself, are we institutionalized? Without giving it too much thought, I would have to say yes, but with do course. I plan on monitoring my son very closely and keeping our house as clean as possible until he is as normal as the next child. I would expect that every parent would do the same if they were in our position.

It is definitely going to be a long journey. One with many ups and downs. I know that there will be plenty more days just like today where I have to fight back the tears. It was about half an hour before I started writing this article that I helped put Parker to bed. Yes, I was absolutely exhausted. But as I sat in the glider beside his crib, I held my son in my arms in front of me. I smiled at him, and he smiled back, and with that smile he gave me strength.

Clinic Tomorrow

Tomorrow will be Friday and that means another clinic day for Parker. He had an unofficial weigh in on Tuesday that had him pegged at 7.60 kg. I am not really expecting much more than that tomorrow. With the last two weights not corresponding to my graph of Parker's previous weights it is hard to predict what he is going to weigh tomorrow. I know that it is around now that infants normally start to slow down on the weight gain so maybe the next month will show us a different trend.

We took Parker for two walks today. Yes, I said we and yes I said two. We went this morning and followed it up with an evening walk. What was exciting for us all was that Parker's evening walk was without his UV shield. Whenever we go out where there are a lot of people, like the hospital, Parker must where his rain shield. This is like his bubble. It keeps people from getting all their germs on him and therefore helps him remain infection free. Like most babies when they go for a walk on a sunny day, we place a UV shield over his stroller so that he does not get sun burnt. Infants under six months are not supposed to wear sunscreen and the fact that Parker is on Septra makes him more susceptible to light. But tonight, the sun had set quite a bit, and it was nice and cool so we decided to let Parker look around. We removed the UV protector, adjusted his stroller so that he was sitting up slightly, and Parker was able to look around as we walked through the neighbourhood like proud parents of a normal baby. Parker normally sleeps through his walks, but this evening he spent the 45 minutes looking around at everything in the neighbourhood.

I know that many of you know that Parker has been in the Toronto Star on a couple of occasions. Of course, we collected a few copies of the paper so that we could keep them as mementos, but Parker's and my uncle Benny gave us a special copy of the Paper. The images and text are so bright that the normal newspaper is no comparison. We have decided to take the three pages we got as a gift and have them matted and framed so we may hang them in our main hallway.

Parker has really taken to his JollyJumper. He laughs and jumps in it for quite some time. Today, daddy whistled to Parker for a good twenty minutes while Parker danced and jumped along. Mommy read Parker a story while he stood there in front of her laughing every time she would turn the page. I tried to get a movie of Parker jumping around but was too late, as he had gotten a little bored by the time I got the camera out.

Cranky Pants

Parker decided that he was going to be a little more vocal today than usual. This afternoon, Parker voiced his opinion about everything. The only problem was, we had no idea what he was talking to us about. To be honest, we are pretty sure he was just being cranky because of the teething. He does have a teething ring that we keep in the fridge, but I don't think it helps very much. I keep having to show him how to hold it in his hands and aim the ring at the part of his mouth that is sore. We used to put the ring in the freezer, but the doctor had mentioned that the liquid may expand while freezing and cause the ring to break. I am pretty sure that the frozen or even a semi-frozen ring would soothe the pain more than the refrigerated one.

Mommy talked daddy into going for a walk with the her and the little monkey this evening. Now, I am not much for long walks but I figured it is time for me to lose some of that pregnancy weight. Unfortunately, daddy matched mommy pound for pound when she was pregnant!

Parker got a new toy and book yesterday from his Auntie Kate and Uncle Michael. A new Backyardigans book and a Stuffed Tyrone. For those of you that are unaware of who Tyrone is, he is an orange moose on the Backyardigans. Parker is very fond of the colour orange as he regularly checks out his Tiger from across the room.

Parker went down to sleep just before eight thirty tonight. We are hoping that we will have a repeat of last night where he slept through the night and finally got up at 5 am for a 130 mL feeding. Yes, I did get up out of bed every time I heard him stirring as I wanted to make sure he was not rolling over onto his tummy. But we decided not to change him or feed him unless he started crying. We will do the same tonight.

We have continued to monitor Parker's temperature and respitory rate. He has yet to show any signs of a fever and his sleeping respitory rate after our walk tonight was 39 breaths per minute.

Happy Birthday Grandad!

It was Parker's Grandad's birthday today and we had them along with Parker's Uncle Michael and Auntie Kate over for a barbeque. Everyone knows the drill when they come to visit us, and it begins with a thorough sanitation of the hands at the front door. The four of them are never in contact with children and none have been sick for some time so we felt quite secure that Parker would not be exposed to any germs through the afternoon and early evening.

We had a wonderful time with everyone. And everyone left quite full, well everyone except Parker. He was being a little stubborn with his eating today; however, by the end of it all Parker was able to finish off a litre of formula plus a small bowl of rice cereal.

Parker had his enzyme injection today. It went well. He is quite good when he gets the injection, but is not to pleased once they start pushing the PEG-ADA into his leg muscle. Parker does find it quite uncomfortable.

Parker also gave blood today. They are very good at letting us know his numbers later that day, and today was no exception. I apologise that I do not have my specific numbers with me, but all of his counts were up today. This, we are quite pleased with. In addition, Parker had an unofficial weigh in today. Although, we don't count Tuesday weigh-ins I will mention it now only because it shows that last Fridays low weight gain was only a blip on the radar. Parker weighed in at 7.60 kg or 16 pounds, 11.5 ounces.

Happy Birthday, Grandad!

I'm All In... Texas Hold'em Style

My apologies for not writing yesterday. Monday was one of those days where all the tired caught up with me. The previous night Parker decided he wanted to get up to eat at 1am and 4am. Something we have not been accustomed to. About a week ago, Parker stopped sleeping throught the night and would wake up for a early morning feed. Sunday night he did it twice. Regardless, we were a little extra tired yesterday.

A friend of my cousin's wife organised a Texas Hold'em tournament/fundraiser yesterday for Parker. I decided to take a seat at the table but was out early when I called an 'all in' that I thought was a bluff. I had a wonderful time and Tracy and I were so touched by how many people came out to support Parker and our family. In the end, Josephine came up big and won big at the 'Winner's Table'. Way to go, Josephine. If someone was going to beat my cuz, I am glad that it was you.

Parker started eating oatmeal cereal now and enjoys it quite a bit. Just this morning he had a small bowl of it and then had a little rice cereal to wash it down. In a few days we will be starting him on the barley cereal. We hear that many infants are not fans of the texture of the barley cereal, but if Parker is anything like his dad, I know he will enjoy new kinds of food.

On the topic of barley I have to bring up Parker's nick name when he was in the womb. My wife and I were so excited about having our first child that we would think about how big he was at different stages of the pregnancy. Early on, we had agreed that he was about the size of a piece of barley, so from that moment until we found out Parker was a boy we referred to the little monkey as Barley. Barley D -we would call the little guy.

Parker has enzyme injection tomorrow and will give some blood so that we may talk about his numbers at Friday's clinic. I am pretty sure that my wife is going to ask for them to weigh him since he did not gain very much last week. If she does, I will not fight her on it. To be honest, it would be nice to see that last Friday was just a blip on the radar.

I am currently working on a large blog article to detail Parker's disease. I know that I have covered quite a bit in different articles through the blog but I figured with so many new people to our site that an in-depth article on Adenosine Deaminase Deficient Severe Combined Immunodeficiency is in order. So watch for it in the upcoming week. I am pretty sure that it will span a few days since there will be quite a bit of information that it will have to cover, and I think everyone will understand it better if it comes at them in smaller chunks.

I know there are alot of people from Australia who visit our site regularly, but I was a little pleased with the Italy - Australia game today. I will admit the way it happened was a little cheap. I have to cheer for Italy, the doctor's who are going to save Parker are from there.

Roll Once, Roll Twice

So, now that Parker has figured the rolling over thing out it is hard to keep him on his back. Every time we place him there, not even 10 seconds later he has made his way to his tummy. I guess all that 'tummy time' practise we did for the past few months has paid off because once he is on his tummy he is very content to stay there.

I had mentioned that Parker was trying to roll over in his crib a couple of days ago. Being the anxious father that I am, I was worried that he was going to roll over in the middle of the night. I know many babies sleep on their tummies but Parker is definately not used to that, if the bald spot on the back of his head did not give it away. When Parker wakes up from a sleep he is very good to settle himself. You can hear him move around a bit through the monitor, or talking to his friends on the mobile above his head. This morning when he woke up, I heard him moving and talking so I went in to take check up on him. Guess what I found? One little monkey boy on his tummy. I guess he will get used to being on his tummy in his crib. Knowing Parker, if he is unhappy being on his tummy in his crib we will hear about it through the monitor!

Parker had a visit today from his Uncle Mikey and Aunt Christini. They dropped off their 'Jolly Jumper' for Parker. I did not really know what one was until I saw it. All that I know is that Parker absolutely loved it. He hung out in it for a good hour. I placed it on his gymni and he was right beside the little animals that hang down on the gymni. Finally the little creatures were at arms length and he could grab them and try and place them into his mouth. When I put the 'Backyardigans' on for him, he spun himself around so he could watch them. As soon as heard the theme, he looked over his shoulder to find his five good friends singing.

I have mentioned that Parker has been teething lately and been shoving everything he possibly can in his mouth. He had heard several times in the past that babies can get a fever when they are teething. We were very worried about this since a fever would definately mean another trip back to the hospital and most likely in an isolation room. After doing some research and speaking with the doctors at Sick Kid's I found out that it not the case. The reason that many infants have a fever when they are teething is because they put all kind of things in their mouth. Including things with germs on them. As a result, they get an infection and a fever. With Parker, all of the things he places in his mouth are cleaned thoroughly a few times a day. For that reason, we do not expect Parker to get a fever as a result of placing objects in his mouth to sooth the pain of his teeth coming in.

Lastly, I purchased the last two DVDs of 'The Backyardigans' today. The little monkey just loves them. As I write, my wife is feeding Parker right now while he watches 'Polka Party'. If you have small children, and you don't have 'The Backyardigans' I would recomend watching an episode with your child. You can catch them on Nick Jr.

He Did It!

I had intended on this message to be focused on Parker's clinic, that was until Parker rolled over. Yes, Parker did it. I had mentioned yesterday that he needed a small nudge to roll himself over from his back to his stomach. Today, he kept trying to roll over up by himself but struggled to get his upper body to finish with his lower body. While I was making dinner this evening, Parker was on his gymni trying to roll over. I had noticed that he was getting extremely close so I decided to get down on the floor with him to show him how it was done. And with one extra bit of effort, the little monkey was able to get his upper body to finish the roll over. I was lucky to have the camera close by, so when I realised he was about to do it, I quickly grabbed it and video taped the actual event. You can check it out by clicking here. Way to go little monkey! Everyone is so proud of you. In total, Parker rolled over seven times today.

Parker did have clinic today and with that he had his weekly weigh-in. Recall, that Parker was allowed to regulate his eating this week, and as a result was eating 200 mL/day less than the previous week. I figured this would cause him to gain less weight than he had in previous weeks. Parker's average daily weight gain has been 35.2 grams/day. This week Parker only gained 5.7 grams/day on average. This did bother my wife, to say the least. It did not concern me so much because he has been developing extremely well over the past week. That said, I do think he needs to gain weight in the range of 20-25 grams/day so that he may stay in the 50th percentile for his weight.

Parker is eating rice cereal once a day, and will begin twice a day starting tomorrow. Regardless, we will be trying to make sure Parker eats over 900 mL of formula each day. Today, Parker ate 950 mL of formula.

I am so proud of my little boy. Parker and I had been working on rolling over for quite some time now. What an accomplishment, my little monkey.

Almost There

Parker had quite the busy day today. We worked on his rolling over a few times today and to be honest, I had the video camera out. No, not to analyse his rolling over, but because I thought he was going to do it today on his own and I wanted to get it on tape for everyone. He really dislikes going for his morning nap, so when my wife put him down for the morning, he started to roll over but kept hitting the bumper pad in his crib. Now, all I have to do is give him a slight nudge and over he goes. Hopefully, he will be doing it all himself by the end of the weekend. Once he is over on his tummy, he is quite content and can stay there for some time.

We again let Parker tell us when he was hungry today. In the past, we always made sure Parker ate at least 1050 mL of food, but it usually meant distracting him by having the Backyardigans on. Now, that we only feed him when he tells us he is hungry, we do not need the TV to get him to eat. The downfall is that he eats a couple hundred millilitres less. Parker ate 850 mL today. I am not too worried about that. Parker has his clinic tomorrow and I know that he will be up on the scale, the only question is by how much. The usual is abot 35 grams per day, but with the decreased caloric intake I would assume that it would be less. Parker is currently at the 50th percentile in his weight. Meaning that he weighs more than 50% of all other male babies his age. To stay at the 50th percentile at age six months, Parker needs to gain 21 grams per day for until July 15th. This is considerably less than what we have been accustomed to since we began keeping track, but even with the decreased food intake should be relatively easy to do. So I am assuming that Parker's weight gain will be around 25 grams per day.

Now, recall that Parker has begun rice cereal. Today, he cooperated with my wife during his feed. He made sure to open his mouth whenever the spoon approached his mouth. Parker does not have alot of cereal each day, but he does seem to be enjoying it.

As most of you know, Friday is clinic day. Parker had his blood work taken on Tuesday, so I am sure we will be talking about that tomorrow. We will also be talking about his feeding and sleeping habits. See, now that Parker is eating less, he is waking up for a feed earlier in the morning. I am actually writing this message at 3 am on Friday morning. Less food in the tummy means being hungry earlier in the morning.

School's In

Today was the last day of school for me, but it now means that school is starting for Parker. Now, most people know that Parker's mom is all about naps and feedings and I am all about making sure Parker is developing at least at the rate that is considered normal for his age. In recent posts I had mentioned that one of the side effects of ADA deficient SCID is neorological abnormalities. My wife and I have spent quite a bit of time ensuring that if any pathways in his brain shut down, a new one opened up. Parker does not display any form of a neurological problem. He is at age in his development.

That said, now that I am off from work I will get to spend quite a bit of time with him. He was very close to rolling over from back to front today on his own and we are pretty sure this is something we will see him do in the next few days.

I had mentioned yesterday that Parker will be regulating his own feeding schedule. Today, it went well. Yes, my wife was anxious that he would not eat enough and as a result will not gain weight but Parker ate 910 mL of formula. Although it is below the 1050 mL he was eating before it is above 800mL which was the amount we had set out for him to eat during this experiment. With 1000+ mL feeds Parker was gaining over an ounce each day. Last week alone his average daily weight gain was 45 grams. I would like to see Parker begin to gain weight a little slower. I am hoping for 25 - 30 grams as the average daily gain for Friday's clinic.

Well, I better get some sleep. Parker and I have a big day ahead of us tomorrow.

Take Some... Give Some

So Parker had his Tuesday visit to Sick Kid's today. He gave some blood so that a CBC (Complete Blood Count) could be completed. He also took his injection of PEG-ADA today.

I should probably begin by letting everyone know the results of the blood test. Parker's neutrophils are up. That is nice since we worry that he may become neutropenic being on the Septra. Everything else is pretty much unchanged from the week before. That said, Parker's IGG(immuno gammaglobulin) level was taken. He normaly receives an IGG infusion every six weeks or so. His level has steadily been coming done since his last infusion. It is currently at the normal level which means he will be due for an infusion in the next week. When he gets an infusion of IGG they increase it to a level much higher than normal since they anticipate it to go down.

We have noticed that Parker has started to eat less than we have been accustomed to. We were used to him eating over 1000 mL a day but he has eaten less than 900 mL the past two days. I am not really worried about this since he has gained weight so quickly the past three months. In my opinion, and others, his weight gain needs to slow down a bit. My wife and I have talked it over and I believe that we are going to try and let Parker regulate when he wants to eat. We have been accustomed to feeding him before he begins to cry, but that will change as of tomorrow.

I have decided that feeding Parker rice cereal is an extremely messy event. Today, when we fed Parker, he had rice cereal all over his face. He laughed at us as we tried to get the spoon of cereal in to his mouth. We decided to finally bring down his highchair from upstairs for him to sit in once in a while. He quite enjoyed it. I think it is because we put toys on it instead of trying to feed him in it. Regardless, he was quite content being there.

Food, Glorious Food

Now that I am caught up with my blog articles I can relax a little bit. Trying to write three articles in a day in a half was a little taxing.

I must say that sometimes I forget that Parker has this disease. I mean it was easy to be reminded when we were at Sick Kid's. Having to gown up and where all of that sterile protective gear, how could you forget? But now that we are at home and Parker is doing so well, you have to remind yourself what is going on. Parker is such a happy little boy that you would never suspect that anything was wrong with him. Just this morning, before I left for work and after my wife had just finished feeding him, I took a peek in his room to see him sleeping. To my surprise, he spotted me behind him. The little monkey titled his head back, so he could get a better glimpse of his old man, and let out a big smile, followed by his trademark laugh. Would you expect an immunocompromised five month old to do that?

I know that it has a lot to do with the care we got from Sick Kid's as well as all the effort we have put into ensuring that he is developing at age. But to be honest, a lot comes from all of the love he has gotten from us and everyone around us. I mentioned it at the benefit concert that many people comment on how strong my wife and I are while this is all going on. As I said then, it truly is easy to be strong when your five month old shows you how every single moment you spend with him.

Parker had his first taste of real food on Saturday. We started him on Heinz Rice Cereal. One tablespoon of cereal to three tablespoons of formula. We figured it was about time as he does drink quite a bit of formula, and he is used to taking medication. Giving your five month old food for the first time is not the easiest of tasks. He spits out half of what he takes in, but by the end of it he was starting to open his mouth when the spoon got there. Most of the time he was just opening his mouth to smile, but we took that opportunity to put the food in. Feeding Parker rice cereal is definitely a two person job at the moment. I cannot see what he would like about it, but apparently his grand-dad and nonno enjoyed the taste of Pablum when they had children. Maybe I should give it a try. It may make it easier to feed him. Of course, I will have my own bowl and spoon!

We are still working on getting the little guy to roll over by himself. If we hold one foot he has no problem flipping himself over. Once he gets to his tummy he is quite happy to be able to look around. He has actually started to play with the toys around him when he is on his tummy.

What Being a Father Means To Me

As I sit here at the computer, I reflect what life was like six months ago. It was still four weeks before Parker was born and although I knew I was about to have a son, looking back, I cannot say I was fully aware what that really meant. Yes, I knew that my life was about to change but to what extent I was oblivious. Late nights would of course be out of the question, changing poopy diapers I knew would be a regular occurrence, but there was to be so much more.

New fathers can attest that you think about all the wonderful things that you are going to do together as you await the big day. Playing catch, teaching your son how to skate, and taking him to his first day of school are just some things that come to mind. That said, you can never fully prepare for what you are really going to experience.

The first moment I saw Parker I knew that what I had imagined it to be like was only a small fraction of what it was to be. Time stops as you hold your child in your arms and he opens his eyes for the very first time to see your face. I recall the first night he was born. He lay there in his bassinet between my wife and my hospital beds. I placed my hand on his as we slept and with the tiniest of sounds that he would make, I would awake. Get up I would, to see if my new born son was okay. And with that, I knew that my purpose in life at that very moment was to love and protect my child.

When we came home, he soon took ill and we had to return to the hospital in which he was born. I recall our first day there. As I sat in his room, alone with him in my arms, he lay there looking at me. I looked back at him and the tears began to roll down my eyes. A few weeks before, I could not have imagined the feelings that I was experiencing at that very moment. How could I have?

Everyday when I get up and I look at my son lieing in his crib I thank the Lord that I have been blessed to have him in my life. He is my son, and I am his father. There is nothing I wouldn't do for my little boy. Yes, I look forward to playing catch with him, teaching him how to skate, and taking him to his first day of school, but it is the way he looks at me every time we are together that is what I will always cherish the most.

To me being a father is something you cannot understand until you actually experience it. I look forward to each and everyday that I get to spend with Parker. As his father, I promise to do whatever it takes to give him the best possible life that I can.

Happy Father's Day to all of the father's out there.

Playing For Parker

I need to make sure that the "Playing For Parker" at the Rivoli fundraiser got the recognition that it deserves; so, I am dedicating this article to only it. Last night we had a benefit concert for Parker at the Rivoli. My wife's brother, Michael Kulas from the band James and his wife Katie Griffin came up with the idea for a benefit concert when Parker was first diagnosed with ADA deficient Severe Combined Immunodeficiency back in early March. They spent the past three months organising the event so that it could be successful. I don't think it could have gone any better.

We had such a excellent turn out from so many wondeful and thoughtful people. In the main venue, we had a constant 200 people throughout the night. Michael and Katie anticipated that the turnout may exceed the maximum number that the Rivoli could hold, so they had speakers placed upstairs so that those that could not get into the main venue still had a place to listen.

The concert had several great acts and I would like to thank the performers for volunteering their time for last night. Lisa and Terry from Lost and Perfound, Chris Tait from Chalk Circle, and of course Michael and Katie were all amazing. Mathew, a local comedian, who was the Master of Ceremonies was extremely funny. Much funnier than I ever am.

But to be honest, it was the people that came to support us in our son's battle against this disease that need to be thanked the most. I cannot believe all the people I got to see and meet last night. I would like to thank several groups of people that came out last night. I would like to start with the alumni from Pope John Paul II. It has been over 15 years since I graduated and spoke with most of you, but the fact that you all came out to show me your support meant so much to me. I would also like to thank the teachers, parents and alumni from my current school who took the time to show their support. Some came from as far away as Montreal and Ottawa to be at the benefit. We would also like to thank all the members of our family who came out and brought their friends with them. A thank you to my 84 year old Nonna who sat and listened to the bands until well after midnight.

I also met up with the paramedics that had driven Parker to the hospital back in February. They had read about Parker in the newspaper and wanted to show their support by coming out last night. There are so many people I would like to thank and I really do apologise if I have missed anyone. I know I have. I just want everyone to know that my wife and I truly appreciate everyone who took part in last night's event. It was absolutely amazing.

In addition to the bands on the main floor, a silent auction was set-up up stairs. Playing For Parker t-shirts, CDs and 50-50 tickets were all sold. By the end of the event more than 6500 dollars was raised. Thank-you.

I know I have thanked them all ready, but I really want to thank Michael and Katie one last time. The time and effort you put into this event means so much to us. Parker is very lucky to have an aunt and uncle like you. We know that Parker will love to listen to the song (In your eyes) that his Auntie Kate wrote for him and his mommy for years to come. Thank-you Katie!!

A Day Late

So much has happened the past few days and I really want to apologise for not keeping people up to date. I just had my busiest week of work so I was short on time and was unable to write. I want to begin by thanking my beautiful and wonderful wife for taking over the blog duties and saying those wonderful things about me. I was trying to figure out the best way to get all of the information out to everyone so I have decided to write two seperate articles now. Yes, it is Saturday but I will predate this article for Friday, as it really should have been written then and I will follow it up with a second article about the "Playing For Parker" benefit at the Rivoli, as it deserves its own.

Parker had his second Clinic appointment today (Friday). We knew what to expect since we had gone to one the previous Friday. For those of you who are new to the blog, we take Parker back to the Hospital for Sick Children in Toronto twice a week. On Tuesdays, he gets his first of two enzyme injections. On Friday, he gets his second injection, and is seen by the clinical nurse, an immunology fellow (doctor), a staff immunologist (another doctor), in addiction to some other people that work at the hospital. The Friday appointment is called Clinic. At this appointment he is monitored to see how his treatment is going.

Clinic began by obtaining some measurements. Parker's weight, length, and head circumference were taken. Pretty much everyone now knows that I record quite a bit of data about Parker, including his weight. The previous week, I was spot on with my prediction of his weight after looking at the linear regression I obtained on his weight graph. Parker had been gaining 35.2 g/day so I predicted that his weight at clinic would be 7.30 kg +/- 0.05 kg. That means he should be in the range of 7.25 kg - 7.35 kg. Parker weighed in at 7.34 kg, so I was very pleased. Now, alot of people still used the Imperial System for their measurements with temperature and weight, but being spending so much time in the hospital we have been accustomed to using the metric system. That said, 7.34 kg is 16 pounds and 2.4 ounces. What a big boy. Parker also grew another half a centimetre bringing him to 62 cm, and his head circumference remained the same from last Friday. We are so happy that he is growing as well as he is.

After his measurements were taken, it was off to get his ADAGEN injection. Parker is not a big fan of needles, especially big ones that shoot quite a bit of fluid into your thigh, but he definately handled it well. After speaking with the fellow which is just a bunch of routine questions like, "How is he eating?", "Does he nap well?", "What is his sleeping pattern like?", we met with the staff immunologist. She is so wonderful and whenever Parker sees her he smiles and laughs. The conversation with her was pretty much about how his numbers were from the previous flow cytometry test and how to start him on rice cereal.

Parker's numbers are pretty much unchanged since the last test. His B-cells are still at a respectable number, as are his NK cells. We are still waiting for his T-cells to increase. There are three types of T cells which are matured in the thymus gland. It is these cells that have not increased in numbers as of yet. Apparently it takes a few months for these cells to increase. I am not sure if it is because the thymus gland is not used to working very hard, but I will find out. I have a paper on the long term efficacy of enzyme replacement therapy for adenosine deficient patients that I have sitting on my desk that I still have to read. I am pretty sure some of the answers are sitting in there.

On a note not related to clinic, Parker has been teething and on Wednesday night, after eating over 300 mL of formula we decided to give Parker Tylenol. Parker used to take 1 mL orally before his enzyme injections, but never right after a feed. I got through 0.5 mL of the Tylenol and my little boy started projectile vomiting all over me. I figured 300 mL of formula on me is better than 300 mL of regergetated formula on the bed or the carpet. So I just kept aiming the steady flow of vomit on my shirt. You know what Parker did after he finished? He laughed. He didn't quite eat another 300 mL to replace what he lost but he did have another good feed before bed. My wife and I could have kicked ourselves. We have always known that Parker does not like large amounts of medication after a large feed.

Thank you everyone for being so patient the past few days as you waited for anothee blog post. Come back later today for an article about "Playing for Parker".

We Miss Daddy!!!!!

Well as you can see by the title, today's article is being written by Mom. My husband has been so busy with work the past couple of days that by the time he comes home he is ready for bed. I decided that I would take it upon myself to write this entry and to express how much we have missed daddy. Our days are just not the same when dad is not here to make us laugh. For those of you who know my husband, I am sure that you will agree that his presence lights up any room. He has a smile that is contagious and a heart that is forever giving. The love and devotion that he has towards my son and I is like no other. We are truly blessed to have a man so special in our lives.....
I am very happy to have this opportunity to write because it gives me the chance to thank my husband for all of his hard work and commitment to this blog and his family. Throughout this entire battle, my husband has been a "rock". His strengh, positive attitude and love are what has gotten so many of us through the toughest of days. Parker absolutely adores his daddy. The second he hears his dad come into the room, he instantly smiles. I know that it is often said that the bond between a mother and her child is unbreakable. This is also true for Parker and his dad. Parker has not been the same the past couple of days without his dad around as much as we are used to. I know that he will be so happy in the morning when daddy is here to meet him when he wakes up!

My husband had written a beautiful message for me a couple of months ago (March archives). This is the type of person he is- always giving credit and finding the best in everyone. I believe that it is truly time to give credit to someone who absolutely deserves it. I want to thank him for completing the lives of everyone he meets and making us all a better person. If there is one thing I have learned from this whole experience it is to never take things for granted. Life is so short and unpredictable. We often do not have or take the time to truly thank those who we love and cherish. Before we know it, our lives can be turned upside down. Parker and I want to thank daddy for being so special and for loving us unconditionally. Although we still have a long road ahead, we couldn't be luckier or more fortunate to be travelling it with the most incredible man. We love you daddy and have missed that smile!!!

CBC Done and Numbers Are Up

Parker had his regular visit to the Hospital For Sick Children today. He received his PEG-ADA injection (210U) and then had a Complete Blood Count (CBC) done to check if his numbers were higher than last week. The result, they were. We have been tracking several of the numbers that we feel are quite important, like his total white blood count (WBC), lymphocytes, neutrophils (polys), platelets, as well as his hemoglobin (Hb). All of these numbers were up from the previous week. The one we were the most worried about was his neutrophils because the Septra had caused them to decrease dramatically. Parker came off of Septra while we waited for them to come back up. Now that he is receiving enzyme replacement therapy (PEG-ADA), he restarted the Septra. His neutrophils are monitored quite closely to make sure Parker does not become neutropenic.

Parker took his PEG-ADA injection very well. His mommy held him while they gave him the 210U injection of the PEG-ADA. The little monkey did not cry at all when they inserted the needle into his right thigh. That was definately not the case when the actual PEG-ADA went into his leg. But once he got a few snuggles, he was smiling again.

We are trying to get Parker to bed a little earlier tonight. If we can have him asleep by 7:30 pm I think we would be very happy. He better get some rest now, because this weekend I am going to make him work pretty hard on his exercises.

People ask me alot about Parker's exercises. How often does he do them? Does he like tummy time, does he cry when he is doing it? See, when we went into isolation we heard two different stories. One was that he would likely be delayed developmentally because he was a SCID and confined to a room. And the other was that he should be fine because he will get so much attention in his room. Lastly, we were told that many children display some neurological problems when they have an adenosine deaminase deficiency. We were determined that Parker would be a normal baby when he got out of isolation so we did everything we could to ensure that. We took all precautions to keep him healthy, and we worked with him each day to make sure his muscles were developing. The occupational therapist taught us exercises that were relevent to the things a baby needs to do and by doing that, he picked up on how to do them. When we finally did take him home, he was exactly where he was supposed to be for an infant his age. We continue working with him to ensure that he is always at least at the level he should be.

Lastly, we think we can see a couple teeth about to come in on the top of his mouth. I don't think it will be long before the break through. I also think it will be less than a week before we start him on some solid food. Mmmmm.... Rice Cereal.

Hanging Out With Mom!

Parker spent a good portion of his day with his mommy. I had a long day at work today so mommy was in charge of Parker's exercises. I got to see my little friend when I got home and I wanted to spend it singing and dancing with him. So I made up a song and sang it as we bounced around the kitchen and family room.

I believe that I had mentioned that Parker was making some kissing noises with his mouth a couple of days ago. After closer observations, we think that Parker may be teething. If he is, he is handling it very well. I think after having so many needles and I.V. pokes a little teething does not bother him so much. That said, I do feel bad for the little guy.

Now, I know that most people already know about the benefit concert for Parker this Friday evening but I thought I would put a little reminder out to everyone. Doors open at 8pm on Friday at the Rivoli. For more specific information check out Playing For Parker on the side bar to the right.

I spoke with CHIN today and they were very anxious to help our Parker. They were extremely nice and I would like to thank them very much for wanting to take the time to help our family.

Parker goes for his ADAGEN injection tomorrow. The dosage is to be increased from 200U to 220U. When it was started just over a month ago, his dosage was 180U. With his increasing weight, the dosage has increased as well. In addition, to the injection, I have requested that some blood be taken to check his neutrophil levels. Parker's neutrophils are to be closely monitored while on Septra, a medication that is a precautionary measure for PCP pneumonia. We should find out later tomorrow what the neutrophil count is. Check back tomorrow night to see what it is.

Take a Deep Breath... All Is Well.

I had mentioned yesterday that we were worried about how quickly Parker was breathing. I think I left the last post saying that I was going to check to see how many breaths per minute he was taking. I did. He had just finished playing and had fallen asleep and he was breathing 55 breaths per minute. My wife had also checked his respitory rate earlier today during his nap and it was 36 breaths per minute. Now, I had metioned in my last post that there is a specific range that infants should be in when we are speaking of their respitory rate. After doing some research last night as well as having a child whose respitory rate has been monitored pretty much his whole life I had some new information that I would like to pass on.

I will start with how long your should be counting for when monitoring a respitory rate. Many of you who run or check their pulse on a regular basis will count the number of beats for ten seconds and then multiple by six to get you heart rate. This makes sense since having an irregular heart rate is abnormal and you normally have the same number of beats per 10 seconds for the whole minute. So multiplying by six when you count for ten seconds works great. If your heart rate or pulse was not regular and maybe went fast for 15 seconds and then slow for 5 seconds and then changes again after that it would definately not make sense to take it for ten seconds and then multiple it by six. You would get a result that would be quite construde. Have you ever watched your baby breathe? Have you noticed that she may breathe quickly for a while and then slowly and then speed up again? Does it make sense to count for ten seconds and multiply by six? Well, it is common practise in hospitals to count for 15 seconds and multiple by four. Being with Parker all the time we knew that way the case and had requested the nurses at Sick Kid's count for sixty seconds instead of the normal fifteen seconds. While doing my regular research last night I located some information about just such a thing. It supports my hypothesis that a fifteen second reading for an infants respitory rate is not sufficient. Feel free to check it out here.

The same link also suggests that their is data that states that 50 breaths per minute is not a good cut off for infants to suggest that there is some form of respitory problem. It states that 50% of babies had a respitory rate greater than 50 breaths per minute. Having a strong scientific background I would feel right stating that I completely agree with this statement without seeing the data. That said, I know for a fact that if I am excited or have just finished working out my respitory rate increases. For that reason, I could see how 50% of infants had a respitory rate above 50 breaths per minute. I don't think that would be the case if the respitory rate was taken while the infant was sleeping and was taken for a full sixty seconds.

Now, that I have finished my little blurb about respitory rates I will digress. Parker spends most of his time on the main floor of the house and for that reason we have placed some of his toys on the main floor. Parker's Baby Einstein exersaucer is one of his favourite toys so it is on the main floor. We also have his Fisher Price Aquarium Bouncer on the main floor since he spent quite a bit of time in it in isolation and it is great when we are eating. We can remove the attachment in the front and he can watch us eat. This is important when we want him to learn what eating solid food looks like.

While I wrote this article we moved his Lamase gymnie down to the main floor as well. We usually do 'tummy time' upstairs in his room. But I had a revilation today. Parker loves watching "The Backyardigans" so much that we thought he would hang out on his tummy for extended period of time if he could watch the TV while being on his tummy. You know what? He did. Strong neck muscles are important!

Sleepy Day

Parker rested quite a bit today. From what I have read, babies are supposed to have a couple major naps each day. Parker, is definately not much of a napper. He usually sleeps in after his five in the morning feed and if we are lucky will take a nap in the afternoon for an hour and a half, maybe two hours. But today, he did take his two naps. I hope that this becomes a regular thing for Parker, but I am definately not going to count on it.

for 15 minutes. I know that he does not understand what I am saying but I tI have started reading to my little guy each dayhink it is a good idea for him to get used to hearing what proper grammar and punctuation sound like. Usually, we read one of the books he has in is room, but if he is around and I have an article I want to read, I just read that to him. Yesterday, we read an article on how television in moderation is okay for infants.

I have noticed that Parker has been breathing a little faster since coming home. Not when he is sleeping, but when he is awake. It is definately nothing like it was before he was diagnosed, as his whole head would move with each breath and he would display quite a bit of indrawing. But he is breathing harder. Now, I really think it is because he is playing so much now. He is very active during the day at home. There is so much to do, so many things to play with that it would make sense that he would breathe more heavily. Recall, that when Parker's proteinosis was active he was breathing upwards of 80 breaths per minute. In isolation, he was in the high 40s to high 50s on average. Normal infants breath in the 30s. We have not started counting his breathes while at home, but I think this is something will begin very shortly.

Parker has started to blow kisses when he is blown kisses. He sometimes has difficulty getting his bottom out to finish the kiss but he is definately trying his best.

Parker is squirming around in bed right now, so I think I will go in and check on him. Maybe I will count his breaths for a minute to see if he is breathing quicker.

Parker's First Clinic Day

Parker had his clinic today. I had mentioned in yesterday's article what I thought would occur and I was pretty much spot on. Parker gave quite a bit of blood so a CBC could be taken and a T and B marker cell test (using flow cytometry) could be done, he had his vitals taken, they gave him his ADAGEN shot, we got to speak with a doctor from immunology about Parker in general, and the occupational therapist came to track his development.

I guess I should mention his weight and length first as we were very impressed with both. I had been tracking his weight in Excel and his weight for today was spack on the linear regression I had done. Parker broke the seven kilogram barrier weight in at 7.030 kg, which translates to 15 lbs 7.5 ounces. His length also increased from 58.5 cm to 61.5 cm, translating to about 1.2 inches in growth. Parker will have an increased amount of ADAGEN next week as as result of his increased weight.

When the occupational therapist saw Parker she was very impressed. I showed her a few of the things we had been working on like the exercises to strengthen his abdominal muscles, and how his head control had increased even further. She was also pleased with how he makes sure to keep his feet flat on the ground when standing (supported), as well as how he now uses his hands to grab things. Of course, I had to ask if she thought he was advanced for his age. She felt he was advanced for an infant his age who had been in isolation but was exactly where he was supposed to be for an average infant his age. So, I guess Parker will have to work a little bit harder. Tough love never hurt anyone.

When we sat down with the immunologist the discussion of food and using bottled water came about. Currently, we are using bottled water for Parker's formula after boiling it for 10 mimutes. What we found out is that there is no fluoride in bottled water and as a result children who have used bottled water for their formula have problems with their teeth early on in life. This definately makes sense. So, today when I made Parker his formula for the next day and a half I used tap water and boiled it for 15 minutes to kill off anything that was in it.

Parker's CBC came back today, and we were slightly disappointed with the results. Although, his blood counts are in the normal range all of the different cells that make up the CBC were lower than his last CBC. I am definately not going to stress about it today. One test is definately not a trend. That said, if the numbers drop again next clinic I will be a little more curious as to why. Parker's neutrophils have also dropped but are also still in the normal range. I did request that they be retested on Tuesday when he goes back for his next ADAGEN shot. We were told that his neutrophils would be very closely monitored if we went back on Septra. For those of you who are new to this site, Septra is a medication Parker takes to protect him for PCP pneumonia (a very bad form of pneumonia). Parker became neutropenic when he was on Septra a couple of months ago. As a result, the changes his medication and recently hs neutrophil levels returned to normal. We agreed to retry Septra when we came home last week as long as his neutrophils were very closely monitored. Parker cannot take park in the gene therapy trial if he is neutropenic.

Not related to clinic, I would like to point out that I have added a section on the right for all of the press that Parker has gotten in the past two months. As well, I added a couple of links that you may be interested in. The first is a glossary of terms related to blood and the different cells involved with the immune system. Secondly, I added a handy nurses conversion web page. It pretty much has every conversion you could want to do if you are a parent. So take a look and enjoy.

One... Two... Three...

Parker had another milestone happen today. Parker moved from his number two diaper to a number three. Now, again, we are not sure how much the little monkey has gained since leaving the hospital, but I do know he is more active since leaving and has increased his appetite quite remarkably. It is not to say that the number two diapers were not working, but as the bib says, this kid likes to eat... Actually, it was more of a comfort thing. As a sales associate had put it to me once at a reputable men's clothing store, Parker has graduated to the next pant size!

Parker has continued to take advantage of every second he has in his exersaucer. He is able to stay in it for longer periods of time and now takes advantage of quite a few of the toys attached to it. He is becoming quite good at moving the pages in his plastic book. Actually, his hand and eye control has improved vastly since coming home and being introduced to his Baby Einstein exersaucer. We have placed rattles on the exersaucer and he regularly picks them up and bangs them against the different toys. He has also been able to transfer what he has learned in his exersaucer to his aquarium bouncer. At the hospital (a week ago), Parker never touched the fish on the bouncer but today he was reaching out and grabbing them. Transferable skills.

What I also like about his exersaucer is that I can place a video on the TV and he will stand there and watch it as he plays with his rattle. Now, I know a lot of parents are anti-television for children, but I am definately not. I think it is important to get lots of different kinds of stimulation. There are only two shows that I have Parker watch regularly and those are Baby Einstein and our whole families favourite, The Backyardigans. Parker loves the dancing, colours, and the music in the Backyardigans. As for Baby Einstein, it allows me to sit and watch it with him. I bought Parker the Baby Einstein about the planets and stars. I really enjoy telling Parker about the what he is watching. You can't expect me not to push a little bit of science on my son. I am sorry, but after taking four years of physics you get a little bit obsessed.

Lastly, Parker is going to Clinic tomorrow. It is our first clinic so we are not completely sure what we should expect. We do know that he is getting his ADAGEN shot tomorrow. I know that we will be seeing the dietician, a doctor will most likely examine him, they will take some blood, and he will get weighed. We think the occupational therapist is to see Parker, and a flow cytometry test may be ordered to check what his lymphocyte numbers are. It will definately be a full day tomorrow.