Some Days Are Brighter Than Others

Today when I went outside I truly felt it was going to be a good day. It was the perfect spring morning. The sun was out, the air felt fresh and the grass in front of my home definitely looked greener. I had a very good feeling that this was the sign of something good coming our way.

Parker slept well the night before, as he has seemed to find a routine that he has become very comfortable with. It pretty much consists of play and eats a lot during the day to keep mommy and daddy very busy, and then sleep when they go home. Now, my wife and I have decided that he does this because he does not want to waste a second he has with us. We both appreciate that very much.

We had our meeting with Dr. Aiuti, from Italy today. I had sent him about 15 to 20 very specific questions prior to our conversation that I was hoping he could answer for me. I must say that we were both very impressed with his answers to my questions, as he was very detailed with his explanations. I did write down the answers to his questions as he spoke, but I do not think it is ethical to share the specifics, as I do have an obligation to keep his unpublished work unpublished until he writes about it. I will say that it was a very positive meeting and that this does create a light at the end of a very dark tunnel.

My wife and I will be making a decision Tuesday evening and informing the hospital and our family and friends of our decision on Wednesday.

Curious Little Monkey

Today was not much different than any other day for Parker. He spent his day with his Nonna and mommy. As usual, he enjoyed his play time and feeding time with his Nonna. Parker had two big 120 mL with Nonna today and as result he did have a positive weight change today. We were also happy to see that his weekly weight change increased as well. We should have an 11 pound baby in no time.

Parker and daddy had there usual fun time once daddy got to he hospital. We did spend quite a bit of time with the gymni today. Daddy thought it would be a good idea to move Parker's lobster to the other side of the gymni in hopes that he would enjoy looking over his right side as much as his left. The end result was Parker hanging out on his side as he tried to swat at the shiny red lobster.

Tomorrow is a very big day. We have our meeting tomorrow with the doctor in Italy so we can ask questions and find out more information about his gene therapy trials.

Remember, vote for Parker whenever you can. He cannot win without your help.

Just Hanging Out With Parker

I must say that today was a very beautiful day. The sun was shining and although there was a little chill in the air it was nothing to keep most people from getting some fresh air. Now, we all know that Parker is unable to go outside but the thought of the little monkey playing with his mommy and daddy at the Park was something we needed to explore.

What do most children like to do when the go to the Park? They like to go on the swings. So we brought Parker's swing from home yesterday, strapped him in, and watched him enjoy the swing as it went back and forth. Now, Parker has yet to grasp the concept of pumping his legs under the swing to go higher, so we were forced to give him a hand. Parker was a little perplexed and slightly unsure of what to make of the whole situation but for the five minutes he did remain quite it was nice.

Now, yes we did have some fun in the chair while it lasted but we all know that when Parker is not eating there is nothing more that he enjoys then his daily 'tummy time' with his dad. Now, whenever I post a picture of Parker doing his exercises I try and post pictures that depict how strong he is. Well, check out how strong Parker's neck is getting now. Does that look like a normal 12 week old baby?

Now before I end this article I would like to thank the couple from Rochester, NY who drove down to Toronto to see my wife and I. It was nice to meet and speak with someone who has a child with the same genetic disorder. Now, if there is one thing that I have learned in the past few weeks it is that each child with the disease is very different. Whether it be how the ADA gene has mutated, how many infections they had prior to be diagnosed, or at what age they were when treatment began. That said, we are very thankful of them for taking the time to visit us.

Vote For Parker

It was about 10 days ago that I decided that I needed to let the rest of the world know how cute Parker was. I figured I would do this by entering him in a baby photo contest so I hit the web looking for a contest to enter him in. It did not take me very long to find a contest to enter my good looking boy's picture. The theme for the contest was April Fool's Day (silly pictures) so I figured I would enter the picture where he was hidden under the blanket, peeking over his mother's shoulder. So I need everyone to help Parker out and vote once a day for the little man. I posted the link on the right side of the page, so please help Parker win a $50 gift certtificate to Toys 'R Us.

Now I must apologise for not letting people know what was going on with my little man earlier this week. It was quite the busy week for me so I did not have too much time to write. That said, I am back at the computer ready to keep Parker's fans informed of his current heroics.

It was Wednesday evening that Parker spiked a fever of 37.9 degrees Celcius. It is hospital protocol to place a child on antibiotics (IV) whenever the temperature is outide of the range of 37.0 - 37.8. As a result, Parker was placed on antibiotics for 48 hours as we waited to see if a blood culture grew from a sample they took from him. Two days passed, nothing grew and Parker was taken off the antibiotics.

The difficulty with being on antibiotics through an IV is that Parker receives 240 mL of fluid (no calories) throughout the day. This does not make Parker less hungry but it sure does make him less thirsty. The result, Parker eats less and receives fewer calories. My wife and I were definately worried that he would not be gaining weight while he was on the IV. Most of you noticed that we had not weighed him since Wednesday when the IV went in since our schedule at night had changed. We did get a chance to obtain his weight tonight and were pleasently surprised with a large positive weight change. Parker currently weighs over 10 pounds and 11 ounces.

Tomorrow, we are meeting up with a family from the States who also have a child with SCID-ADA. There child is currently nine years old and on PEG-ADA. It will definately be nice to speak with a family who has gone through a very similar situation.

Not sure if anyone caught me on the radio yesterday afternoon. The Hospital for Sick Children was having a radiothon on 1010 CFRB among other stations and I got to talk about Parker's story. Apparently, I did not sound too bad. I did give out this website so that more people can learn about SCID and ADA. If you want a copy, Grand-dad taped it for me.

So remember, let the world know who the cutest baby in the world is by voting for Parker.

Is There a Right Decision?

Today, I awoke with a strange feeling deep within the pit of my stomach. I didn't sleep well last night and the only reason I know I did is because I have the dreams to remind me.


Yesterday, we had our meeting with the immunology team to discuss treatment for Parker. Now, recall Parker is clinically healthy at the moment so the focus of the meeting was to provide my wife and myself with information about the three forms of treatment available. Those being a bone marrow transplant, enzyme replacement (PEG-ADA), and gene therapy (as a clinical study).

After three hours of information and questions, to be honest I felt as if I left the meeting knowing no more than I did before it began. The reason they said I felt that way that was because I was very knowledgeable before entering the meeting. Yes, I had done my research, I read medical papers, learned how different procedures are performed, but I would definitely not call myself an expert. I went into the meeting expecting some direction in regards to which treatment to choose, and I did not get that.

Looking back, I understand the reason for not giving us a definitive answer on which treatment would best suit Parker, but I do feel that I should have gotten something from the meeting that I did not already know. At least some information about gene therapy that that would have been gathered since the last published paper from 2004.

As I will explain shortly, the decision on which treatment to choose for Parker falls in the hands of my wife and I, and time is of the essence. We have approximately one week to gather any more information we need and then make a decision. I will now explain the three different kinds of treatment and the benefits and cons of all three.

ENZYME REPLACEMENT THERAPY (PEG-ADA)
The problem with Parker is that he has a gene that does not work correctly. The gene is responsible for regulating the amount of an enzyme called ADA into his body. Parker does not produce any ADA and as a result toxins that would normally be removed by the ADA have taken over his body. These toxins have killed off his immune system, and in some children have caused damage to their other organs, as the ADA is missing from all of his cells in his body.

The idea behind enzyme replacement therapy was that if you could give ADA to a patient that did not have any, if would solve the problem. In 1990, PEG-ADA was approved by the FDA for this use.

The studies have shown that PEG-ADA has helped the metabolic problem that I have spoken of in previous articles; however, its solution to immune reconstitution is not an ideal one. The number of T-cells do increase for some time but to levels lower than a healthy child. After approximately three years the number of T-cells decreases quite dramatically. There have been some individuals that have been on PEG-ADA since its introduction, but their immune system is still very compromised.

Lastly, PEG-ADA is considered an orphan drug, meaning that it is meant for a very small portion of the population. It is not produced in Canada and must be brought in from the United States. The cost of this drug is $125, 000/year. As an outpatient, the cost of this drug falls in the hands of the patient. Although there is a drug programme called Trillium that has been implemented by the Ontario Government to help with the costs, there is a process that must be followed to receive funding, and the funding does not cover the complete cost of the drug.

Bone Marrow Transplant
Bone marrow transplants are the specialty of the Hospital for Sick Children in Toronto. It has been relatively successful for children with Severe Combined Immune Deficiencies; that said, the success does not translate to children diagnosed with SCID caused by an ADA deficiency.

As previously mentioned, my wife and I are haploidentical matches with Parker in regards to our HLA. There are three problems with doing such a transplant. The first is that Parker may not engraft. This means the bone marrow that is transplanted into Parker does not take and we are no better off than we were before. Secondly, there is some chemotherapy (using Bulsufan) that will need to be done to remove the little immune system that he has so that he does not reject the bone marrow. Busulfen, has many side effects, especially for a child diagnosed with ADA as the chemotherapy may cause similar damage that the toxins have already caused. Thirdly, with a haploidentical bone marrow transplant the risk of having Graph Versus Host Disease (GVHD), a potentially deadly outcome is increased. If Parker does have the BMT and it does not engraft, the chances of a subsequent BMT being successful is even less then the original. I had mentioned previously that time was of the essence. The reason being is that once Parker is three months, the chances of engraftment decreases, while GVHD increases.

In addition, he would be excluded from the clinical trial involving gene therapy, as he would have not only his own cells but his donors as well. This would cause a variable to be added to the study that they are not willing to include. If the BMT is successful, it will alleviate the problem of not having any T-cells; however, it will not yield him B-cells. Parker would have to be on immunoglobulins to supply him with working B-cells. This is not a major concern.

Gene Therapy
I previously wrote quite a bit of information on gene therapy in a previous article so I will not go into how gene therapy actually works. I will just talk about the benefits and cons of this form of treatment. Clinical trials on gene therapy are being conducted in Los Angelos and Milan, Italy. The idea behind gene therapy is to take Parker's bone marrow using a needle in his hipbone, and then insert a good ADA gene into these cells using a virus and then infuse these modified cells back into Parker.

To date, I am unaware of how many patients have gone through the LA trial and what percentage of them were successful. Dr. Kohn, in LA, has not published his data using the newest protocol and for that reason I do not have enough information to make an intelligent decision. The protocol that is being used in this trial is based on the protocol developed from the trial taking place in Italy by Dr. Aiuiti.

The trial in Italy does have some published data from 2004 to discuss five patients that have undergone the gene therapy. This paper does describe relative success with these patients. It is my understanding that there have been four more patients since then but I am unaware of their outcome. I will need to speak with Dr. Aiuiti to discuss his most recent results with his study.

The major downfall in regards to gene therapy involves the fact that very few patients have gone through the study. Yes, it seems to be safer, as there is no chance of GVHD; however, if the new DNA does not interact with his current DNA correctly then there is a chance of Parker developing cancer. Although this is a possibility, there has not been a single ADA patient to date that has undergone the therapy and then developed cancer.

The other major difficulty with choosing gene therapy is that if gene therapy does not work then the ideal time to do a BMT has passed, and the only viable solution, in my opinion, would be to place Parker on PEG-ADA until a better protocol for gene therapy has been approved and written. Prior to taking part in either study in gene therapy, Parker would be placed on PEG-ADA for six months as an outpatient.

So I remain with that strange feeling, in the pit of my stomach, pondering the question, is there a right decision.

A Tired Little Man

Parker was quite the tired little boy today. Although he did have a visit from his Nonna, to her dismay Parker was a little more interested in getting some sleep then playing. We are not sure if it was because he played so much yesterday, the fact that he had to give blood today, or because he seems to be going through a growth spurt. Regardless, he was not much for playing today.

That said, he did have another good feeding day, polishing off over 600 mL before we left for the evening. Parker gained 0.7 ounces and now weighs in at a cool 10 lbs 3 ounces.

When Parker's daddy got there he did have a change in heart and was able to be inticed into playing for an hour and a half. Parker had his best 'tummy time' to date and was also able to spin the lobster on his gymni quite a few times before daddy got bored and wanted to play a different game.

After play time, Parker decided he wanted some food but before I could say spaghetti he was out like a light, fast asleep in his daddy's arms.

The Emperor's New Clothes

Today Parker got to throw away his yellow sleeper and dawn some new clothes. Now that the little monkey is not hooked up to any wires or tubes we thought it would be a good time to introduce to him to the GAP. Parker loved being in his new blue long-sleeved shirt and cool denim jeans. You can see him lounging around as he checks himself out in his new elephant mirror, the perfect accessory for any baby's crib.

Parker spent the day hanging out with his mommy and daddy. Doing what he does best, eating and playing. Parker decided that he was going to take advantage of having the whole day with his dad by not sleeping a wink during the day. It was play, play, and more play for this little monkey. If it wasn't trying to swat at his new mobile, or lying on his back on his gymni, it was either doing a little 'tummy time', or his real favourite, climbing up his daddy's stomach.

But all play comes at an expense. Parker was a hungry little boy as he polished off 625 mL by the time we left tonight. In the end, we had a great time together. So great, that mommy had to kick daddy out of the room so she could put Parker down for bed. Apparently, daddy's only know how to play. So after daddy fed the little monkey, he snuggled with his mommy and finally fell asleep.

Don't tell your mommy little monkey, but next weekend we can play all day too.

Double Digits... Here I come!

What a day it was for Parker. Not only did he get a visit from his Nonna today, he learned first hand the Nonna's motto: "You will know how much I love you by my how much I feed you". Parker began the day with a visit from his Nonna, who was kind of enough to use her alterate status to give Parker's mommy and daddy some time away from the hospital.

Now, I say that Parker learned the Nonna's motto because everytime his mommy called to see how he was doing his Nonna was feeding him. By the time we reached the hospital at 2pm, Parker had already polished off over 500 mL of formula. Now, with an appetite like that we were expecting some big numbers on the scale tonight. Parker definately came through for us smashing the 10 pound barrier, weighing in at 10 lbs, 1.6 ounces. Parker had his biggest positive weight change to date as he gained 3.4 ounces. Parker's average daily weight gain for the week also went up, as it was a whopping 33.4 grams. That was over 11 grams a day more this week compared to last. Now, I wonder what side of the family he gets his appetite from?

When mommy and daddy did arrive today, they did so bearing gifts. We both realised a couple of days ago that Parker enjoyed looking at himself in the mirror that the child life worker brought him. So that Parker can better admire his good looks we bought him a new elephant mirror. To say that Parker enjoyed his new gift would have been an understatement.

In addition to his new mirror, we also purchased him a new mobile. It is definately quite the concoction. Parker stared at it for a good 25 minutes, mesmerised as the bright animals moved past his hand, while the music of Mozart and Bach played in the background. Parker is still learning to move his hand out in time to grab one of the bright coloured animals. Give him a few days, and he will show us all he can do it.

Although Parker has been doing extremely well since coming to the reverse isolation room, my wife and I had requested that the occupational therapist come by to see Parker and evaluate where he was developmentally. Now, recall that most SCIDs do fall behind in this category. So when the therapist evaluated Parker you can imagine how surprised she was when she saw strong and alert Parker is. Although, he had been sick a good chunk of his life, and had a large block attached to one of his limbs for two weeks to secure an IV, Parker was exactly where he should be for an 11 week old baby. She told us that whatever we were doing, we were to keep on doing it. The occupational therapist will visit Parker every Friday to see how he is doing. Trust me. If she was impressed this week, just wait and see how impressed she will be next Friday.

A Message to a Very Special Person

Each day I find myself in the parent lounge at the hospital, talking to one of the mothers who's child is receiving treatment for their cancer. Some mothers that have come to be with their child live relatively close to Toronto like Durham, Mississauga, and Etobicoke, others live further away and travelled from the Ontario-Quebec border, and still, some come from as far away as New Brunswick and Nova Scotia. Their children's ages range from 3 months to 18 years and their child's reason for receiving treatment are all different. That said, these mothers have one thing in common, they have put their life on hold to be with their child. Day in and day out, you will find them at the hospital either talking with doctors, gowning up to enter their child's room, or discussing what their child's white blood cell count is with another mother in hopes that it reaches that magic number so they may bring their baby home.

When I go to sit down at the computer to write my article for the day I am usually unsure what story or information I will pass on to the friends and family that read this web log. Sometimes I look at the pictures that were taken for the day, other times I will write about some treatment that the doctors have been discussing with us, but today's article has been in my mind for quite some time now.

Parker's diagnosis with ADA has been extremely hard on everyone in our family. The thought of not being able to see Parker, the concept of Parker living out his first year in isolation, and the uncertainty of whether his treatment will be successful is difficult for everyone. But today, this article is not about everyone. It is about my wife.

As a man, I cannot imagine what it was like for my wife to carry my child inside her for 9 months, to know how it felt as she gave birth, or to even conceptualise the bond that she had with Parker whenever she breastfed him. But even more difficult to imagine is how she felt after her little boy got sick and how all the breastfeeding and cuddling in the world could not make him better.

Each day, I get up in the morning and go to work, and each day my wife gets up and goes to the hospital where she can be with her son. She arrives at the hospital between eight and nine, puts on her sterile boots, hairnet, mask, gloves and gown and enters the isolation room where she stays with Parker until we leave that night around eight o'clock. Everyday she puts on a big smile underneath the mask that covers most of her face, opens up her eyes as wide as she can, and sings to him so he can hear her voice. She does this religiously in hopes that he will soon smile back at her.

Everyone I have ever spoken with has always said the same thing. Parker acts completely different when he is with his mother. He settles much more quickly and is definately less fussy when she is around. I have come to realise that there is a very special bond between a mother and her baby and each day I am lucky enough to witness that bond as my wife holds her son close to her body and kisses him through her mask. Now, I understand that Parker has yet to master the concept of language, but I know in my heart that there is a message he would like me to pass on to his mother.

---------------------------------------------------

Please know that everytime I see your eyes wide open and hear the songs that come from your direction I know you are smiling at me from behind that mask.
----------------------------
I love you.
--------------

How Does this Kid Do it?

Well, Parker has been off oxygen for some time now. The nurses have repeatedly done spot checks to make sure that his oxygen saturations are above 93%, and they have been. Parker has also been having respitory rates in the normal range of 35-50 breaths/minute. This is down dramatically from the 60-90 breaths he was doing when he was originally diagnosed with PAP (see March 21st article). I don't know how this kid did it but it seems as if he has won his first battle by beating PAP.

The treatment for PAP is a medication called GM-CSF that I had talked about in a previous article. The doctors have decided that they will not be giving Parker the medication when it arrives from the States next week but hold the medication as it has a three year shelf life.

Mommy and daddy are very proud of their little boy for doing this. Although we are not sure exactly why, it could have cleared itself up for a number of reasons. The BAL that was performed with the lung biopsy probably cleaned his lungs somewhat, the IVIG that he was receiving could have played a role, the fact that he is in reverse isolation and free of germs didn't hurt, and finally the fact that he is eating like a normal baby.

Today, Parker had a calorimetry test done. This is a machine that is attached to a box that goes over Parker's head and measures the CO2 and O2 exchange. The purpose of the test is to check his metabolic rate so they can modify his calories appropriately to compensate for his increased metabolism. The test concluded that he burns calories at a rate 1.3 times greater than a normal infant. From my research, I have found that the formula that Parker was on prior to be diagnosed with ADA had 2800 KJ/L. This is typical Enfamil formula. Since being diagnosed, the dietitican has changed his formula to Nestle Quick Start, which he likes better, and increased the concentration of the formula to 3800 KJ/L. A simple calculation will show that this is 1.35 times the normal number of calories in an Enfamil formula. This is more than sufficient to cover his higher metabolic rate caused the ADA deficiency.

To see how this affected Parker, he was born at the 25th percentile for his weight, when we came to Sick Kid's prior to moving to isolation, Parker had already dropped to the 10th percentile. When he did move to isolation he had fallen further to the 3rd percentile for infants at his age. The goal from there on in was to have him gain weight at this percentile and not let him dip any further. As a result of the concentrated formula and Parker's new found appetite, Parker has gone from being at the 3rd percentile to the 4th percentile for his weight. Remember, a small step forward is still a step forward.

Is Gene Therapy the Way to Go?

Today my wife and I found out that our HLA is only a 50% match with our son. For those of you who are unaware of what HLA is, I will explain. HLA cells are located in all of you organs and tissue in your body. They let your body know what belongs to you and what is foreign (like a virus). There are many locations where HLA reside but there are only really 6 that are extremely important in making sure that your immune system identifies what is yours and what is not. The chances of you having the exact same combination of HLA as someone else in the world at those spots is extremely slim.

That said, when two people produce a baby they supply the child with half of their HLA typing. Just as you are responsible for giving half of the rest of your genes to your child, you and your spouse do the same for HLA. That means Parker got half of his HLA from me and half from his mother. So at the very least, he would be a 50% match with us. The chances of him being any more of a match than that would require there being some strange similarities in my wife and my genetic makeup if you know what I mean (kissing cousins ... hint hint).

Now, why is HLA important? Well, if Parker is getting stem cells from us that would mean that we would not be identical matches. The only way he would have an identical match would for him to have a sibling that got the same HLA from us. When a stem cell transplant is done with parents it is usually the same situation that we are in (3 out of 6) and is called a Haploidentical Stem Cell Transplant. Sick Kids in Toronto has been successful with this type of treatment; however, it has been unsuccessful more often than not. That said, many of the children were far worse off than Parker, as they had already caught several infections. This presentation by the FDA explains the different treatments that have been done for patients with SCID-ADA and how successful they have been.

The first gene therapy trial ever done was with ADA. The reason being is that SCID-ADA is caused by a single gene, it is easy to regulate as it is always turned on in our bodies, and finally the ADA gene only needs to work at a 10% level to be very successful. The main centers that perform gene therapy are Italy, UK, France, U.S., and Japan. Gene therapy has come a long way since its first use in 1991. The protocol has changes several times.

Currently, Italy has been the most successful with gene therapy. They were the first center to attempt gene therapy and have currently done seven human clinical trials in the past five years with their newest protocol. All of which have been successful to some degree. We have currently been told that the center in Italy would accept Parker in their clinical trials. In the following paragraph I will explain the current protocol for gene therapy as performed by the center in Italy.

The procedure begins by removing stem cells from the patient. These cells are then placed in a culture and infected with a retrovirus that has been encoded with ADA. The patient is conditioned with a medication called busulfan (a mild form of chemotherapy: non-myeloablative conditioning) at a relatively low dose to make space in the bone marrow for the growth of new working stem cells. Once the patient is conditioned, the retovirus with the improved stems cells are reinfused into the blood stream. The retrovirus binds to the cell and allows the RNA to create a small piece of corrected DNA that gets inserted into the patients own DNA. When this occurs we have cells in the body that have a working ADA gene in them. Check out this site for a more illustrated version of what happens at the cellular level. Check other then viruses as vectors and work from their.

Many of you may have read or heard about the deaths in France that occured due to children who obtained leukemia as a result of gene therapy. The reason was that the DNA binded to the incorrect spot in the DNA. The trial consisted of 18 patients. Of those, three contracted leukemia, one of those died. As a result, the gene therapy for SCID patients was discontinued in the United States.

It is to be noted that the trials in France did not deal with SCID-ADA but X-Linked SCID. As a result, the ban on SCID-ADA gene therapy has been lifted in the United States as it follows the same successful protocol developed in Milan, Italy.

A Visit From Nonna and Nana

Parker has been extremely lucky the past two days as he has had two very special visitors. On Monday, Parker got to spend the day with his Nonna. He was so excited that he got to hear first hand how much his Nonna loved him and that she is passing on all her strength to him. Nonna got to watch Parker play on his back as he tried to swat at his fish, climb up her gown as he strengthened his neck muscles, but from what I heard from Parker's mommy, he enjoyed sleeping on Nonna's shoulder more than anything else. Parker is so very appreciative of his visit with his Nonna.

Today, Parker got a visit from his other Grandmother, Nana. Parker loves it when his Nana comes to visit him. He enjoys being cuddled up with her as he gazes into her eyes. Parker remembers his sleepovers with Nana before he came up to his new room. He always enjoyed knowing that it was gonig to be her that was staying over with him. Parker loved waking Nana up at night so he could get some alone time with her.

Parker has impressed the doctors so much with his energy, alertness, and positive weight gain. We have learned the integral role that we have played in Parker's successes to date. Daddy and mommy are so very appreciative of their own parents as they have been so supportive throughout this difficult time. More over, we would like to thank them for showing us how to be so loving and caring so that we may make such a positive affect in our son's life.

A Day At the Spa

Each day Parker shows everyone that he is an extremely strong and resiliant baby. With a routine finally set for Parker of sleep, play, and eat he is so much happier. We hardly expected a positive weight change from him after his bath but Parker showed us how well the routine is working by adding another 10 grams to his already chubby little body.


Speaking of bath, Parker has recentently discovered that bath time is not that big of an ordeal. It no longer entails 10 minutes of Parker belting out a high pitched cry while quivering his bottom lip. The little monkey now enjoys the process of being clean. Mommy and daddy now refer to Parker's bath time as 10 miniutes at the Spa. We have yet to decide which form of bath Parker enjoys more, a sponge bath or a full fledge dip in the tub.


With the sponge bath, Parker gets to be snuggled up in a comfy blanket as his daddy holds him. Mommy then uses the warm sterile water to wash his little body parts as the monkey looks on. If it is a full blown bath, we place the little guy in the tub filled with suds, warm sterile water and a bunch of towels and blankets so he can kick up his feet as his mommy and daddy do all the work.

A Lesson Lived is a Lesson Learned

Parker gained another two ounces over the last day. That is definately the Parker we remember. Before the little monkey got sick he gained weight at a very quick pace. So you can imagine how happy his mommy and daddy are when they see his weight increase. We have been told that the weight gain we are looking for is 15 - 30 grams per day over the stretch of a week. Parker was in that range this week.


After applying what I learned the previous day, Parker had his best day yet on Saturday. Parker's eating habits were a little bit different as he decided he wanted to eat 60 mL every couple hours. Although he was just shy of the 600 mL goal for formula consumed we were very happy with his feeds. Today, Parker had his largest feed ever, consuming 130 mL in a single sitting. To say that he was tired after that is an understatement.


Following a good sleep, Parker and his daddy enjoy playing with his gymni. He loves looking at the fish and trying to grab them. Daddy takes the fish and makes them swim around his little body, nibbling at his tummy and neck. Parker continues to try and flip over on to his side by using his opposite arm and leg as leverage. Daddy sometimes gives Parker a hand in flipping over to his stomach by letting him hold his finger and pulling him. The result is a very happy little monkey lying on his tummy lifting his head as high as he can.

Is it Play Before Eat or the Other Way Around?

Yesterday was another excellent day for Parker. He fed very well, consumed just over 600 mL and gained a full two ounces. Mommy and daddy were very pleased with the progress the little monkey made on their anniversary.

The dietitian came to visit Parker to measure and record how well he has been growing. Parker’s head circumference has grown a full two centimeters, measured 39 centimeters. His length was recorded at 19.5 inches, half an inch greater than his birth length. These measurements are meant to act as a baseline to refer to from here on in. Although Parker’s measurements were taken at birth the apparatus used here at Sick Kids is much more precise.


Parker may not be growing extremely quickly but all the doctors, nurses and staff have been commenting on how well he is doing developmentally. During his tummy time, Parker was able to lift his head even higher than Thursday. Parker’s climbing has also continued to improve. The little monkey is not a happy camper when I hold him unless I let him climb up my body. Today, his doctor commented on how immpressed she was with his head control. Parker loves his new gymni. You can see him playing with the toys while lying on his back. Something that he really gets a kick out of doing.


If there is something that daddy has learned the past couple of days, it is not to over stimulate Parker after he has eaten. Sometimes it is difficult when all daddy wants to do is play and all Parker wants to do is climb over his daddy’s stomach and look over his shoulder. The end result is usually a good vomit setting us back a 75 – 100 mL feed and daddy feeling a little down for causing it. Parker doesn't like it when daddy feels bad so daddy has learned that it is definately play before food and not the other way around.

How Does Your Baby Say Thank You?

After re-examination of Parker last night at 11pm Parker still did not display a fever. The doctor felt that Parker looked well and was comfortable not starting him on the I.V. at that point. We were all in agreement that Parker would be checked for a fever amongst other things every hour throughout the night to see if antibiotics were warrented. Parker ended up having an excellent night and to this point is still I.V. free.

I understand that everyone has Parker's best interests in mind, whether it be the doctors, nurses, family or friends. That said, Parker can be rest assured that in the end his mother and father understand that they know him like no one else and will always be his final advocate.

After the doctor left last night and I had put Parker to bed, I repeatedly told him that his daddy loved him and that mommy and daddy promise to never let anyone hurt him. My little baby responded by staring his daddy in the eyes and holding the biggest and longest smile I have yet to witness.

When Did I Get My M.D.?

Parker made me make a medical decision tonight that I did not feel I should have to make. Parker had a rectal temperature of 37.9 degrees at 6 o’clock this evening. When a temperature reaches 38.0 degrees it is considered a fever and a SCID that cannot fight infections must receive antibiotics. As a result, the doctor prescribed antibiotics, which would require Parker to be on an I.V again.

With Parker being so active lately and doing so well off the oxygen you can imagine the anxiety that the thought of placing him back on an I.V. would cause my wife and I. Being on an I.V. unnecessarily would make it difficult for him to climb and push off my hands, as well as making him feel bloated by the antibiotics. As a result, I requested that a second rectal temperature to be taken. The result was 37.4 degrees, not a fever. Unfortunately, this did not sway the doctor of the treatment for the original reading.

Throughout all of this, Parker continued to try and climb up his daddy stomach, watch figure skating, and be placed vertically so he can press his feet on the bed and push off the mattress of the crib.

I had a discussion with the doctor on call as well as his nurse for the evening and informed them that I wanted another temperature reading taken. If that temperature came up as 37.6 degrees or higher then they had my permission to give him an I.V. for the antibiotic, otherwise they did not. They agreed to take his temperature and the result was 37.2 degrees. I informed the doctor that Parker would not be getting antibiotics this evening.

Parker will be monitored throughout the night; his temperature will be taken every hour. If Parker does have a temperature they will have our permission to give Parker antibiotics through an I.V. Let us hope that is not the case.

Parker Plays Peek-A-Boo

Parker has continued to play and eat since we have come to 8B. He finished yesterday with 730 mL of formula, 130 mL more than they had hoped. Way to show the dietitian, Parker. Today, Parker continues to eat at a pace better than expected. He did have a set back when his daddy felt like playing right after a feed causing him to vomit about 75mL.

The only thing that Parker enjoys more than eating is playing with his mommy and daddy. Here you can catch Parker in a game of Peek-a-boo. They don't come any cuter then my son.

The nurse hooked up Parker to the moniter to see how he was doing off of the oxygen. The goal is to keep the little monkey above 94% but my son showed us all how determined he is by satting at 100%.



Parker's neck muscles have matured very well. His favourite past-time is placing his hands on his mommy's shoulders as he looks at the pictures on white board of the other members of his family.

A Great Day For Parker

Parker has taken to his new formula very well. Well enough that he actually eats more now than he did before. This morning the nurse fed Parker 120 mL his biggest feed yet. The dietician said she would be very happy if Parker had 600 mL per day. Half way through the day, Parker has taken 400 mL. Can you say little piggy?

The little monkey has continued to use all the calories he is taking to learn as much as he can. We did our first session of ‘tummy time’ today. Parker’s neck is getting very strong as he tries to lift his head to look around. Parker definitely enjoys challenging himself. He loves pushing off my hands with his legs as he tries to show off his strong muscles.

As I sat there this morning holding Parker, I noticed the corner of his mouth move up very slowly, then his mouth opened, and finally up went the other cheek. Yes it was Parker’s first real smile. Then a couple of minutes later Parker showed his mommy and daddy that it was not an accident as he did it one more time.

Quite a few accomplishments occurred today, but what was the most rewarding was that he did all of these without the need for oxygen. Parker went off of oxygen last night for five hours and has been off oxygen since 9am this morning. It is so nice to see the little monkey without a tube in his nose.

When Parker has days like these it makes life so much easier for his mommy and daddy.

Did Someone Forgot to tell Parker he is Sick?

You would never know that Parker had some major health problems. The little monkey is an absolute pig. Since coming off of his morphine from the lung biopsy a few days ago his little appetite has grown to quite a large one. We used to have a difficult time having him eat 45 mL of regular formula every 3-4 hours. The past few days, Parker has been eating formula concentrated at 3300kJ/L which has more calories then regular formula. While on this formula, Parker consumed 700 mL yesterday.

Today by 2:00pm Parker had already consumed 500 mL. The dietitian has increased his formula to 3800kJ/L in hopes that he does not want to eat so frequently and for him to gain some weight. With Parker having ADA, his metabolic rate is increased so it takes a lot of calories for Parker to gain weight. The dietitian as well as Parker's doctor is very pleased with his appetite.

When Parker is not eating he is learning. Parker crawled up my stomach today twice by pushing off my hands and grabbing my gown to pull himself up so his head is over my shoulder. He loves to be able to hold his head up over my shoulder so he can look around. Parker's muscles are extremely strong. Yesterday, he tried to roll over on to his stomach while he was being examined by the doctor.

This kid has fighter written all over him.