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.

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.