Reached 100,000 Hits Friday Night

Yes, it finally happened. At 11:35pm, on Friday night someone hit our site for our 100,000 recorded hit. It is definitely something I am excited about. I remember when I first started keeping track and we got so few hits each day but we were so excited every time we saw that someone had come to visit Parker on the web. Thank- you everyone for visiting and allowing us to share our story with you.

Today is New Year's Eve and with it comes the start of a new year. A lot has happened this past year and although some of it has been difficult all of it has been worth while. I know that this year is going to be a very exciting one for us and our family. It is going to contain some uncertainty as well as its own difficulties but I know that when I sit down at the computer next year to write the article summarising 2007 I will be a very thankful person.

Parker is currently taking a nap. He has had quite the morning, playing with all of his toys. We noticed a few days ago that Parker had started grinding his teeth. This could just be a new thing he has learned, but also could be do to stress. So, the past couple of days, we have placed him in front of the television with all of his toys while the Backyardigans played. Yes, he loves that show, but it he spent most of the time playing with his toys and climbing all over the furniture. Every once in a while he will stop during one of their songs, start rocking back and forth while he shakes his head from side to side. He is quite the little dancer. We got our first DVD of the Backyardigans as a gift back in May and started playing them while we were in the hospital for Parker. He has always loved them. We are pretty sure that we are going to paint his room a Backyardigans theme for when we return from Italy as our gift to him for all that he has endured. By then, we will have him move from the baby room to the room attached to it via a bathroom. I know he will love it.

I recently purchased a gate for the top of the stairs to keep Parker from accidentally going down them. Parker has now been given free range of the upstairs (minus the bathrooms) to crawl around on. He has a couple of places that he enjoys the most, like his play room and our room. But with his speed we figured that we better house proof the upstairs.

Speaking of the stairs, we thought it would be funny if we placed Parker at the bottom of the stairs and his Winnie the Pooh mobile at the top of the stairs. We were curious how fast he would get from the bottom to the top. I could not believe how fast he went. He did not stop once. Of course, we had to take him on an extended ride of the upstairs once he showed us how fast he was.

As for his riding truck on the main floor, Parker could not surpass a tortoise and may even overtake a slow moving beetle if we allowed pets in out home. He loves riding the truck over to the stairs so that he can get off the truck, by himself and begin crawling up the stairs. I wonder how fast he would go on his truck if we used the Pooh-mobile as a carrot? Maybe we will try that later.

I hope that everyone has a wonderful New Year. I know I plan on it.

Christmas is Over

A couple of days ago my wife decided that Christmas was finally over and that it was time to take the decorations down. It was funny because when my wife has it in her head to do something there is no stopping her. So, as fast as the decorations went up, they came down. I even have the scratches on my arms to prove it. Eighteen hundred lights coming off the main floor Christmas tree was the cause of eighteen hundred epithelial cells coming off of my arm. Regardless, we had a wonderful Christmas and the time is now to prepare to go to Italy. We should have a couple of events before that, one being Parker's birthday and the second the birth of his new cousin. Cool Auntie Kate is due in January and we along with Parker are looking forward to seeing him.

Just prior to writing this message I noticed that we were up to 99,877 hits on this site, excluding ones by us and Nana and Granddad. So we are expecting to hit the magic 100,000 sometime later tonight or early tomorrow morning. I wish I had someway of keeping track of who goes with what hit but with my current tracking method, I do not. I think I will add the feature when I rewrite the site. I do have to say it is quite exciting that we have had so many people come to the site to learn about Parker and Severe Combined Immunodeficiency.

Parker had his trip to Sick Kid's today to get his ADAGEN injection. He weighed in at 11.625 kg (25 lbs, 9.2 oz) keeping him at the 90th percentile. We were not expecting to see one of the immunologists today but we did. The primary concern of ours was the discoloration of Parker top teeth. We do our best to brush them at least once a day but it has not helped. Parker does not get an iron supplement which can cause darkening of his teeth and Septra is apparently not one of the medication that causes it either. As a result, Parker will be visiting the dentist at Sick Kid's on Tuesday. I am not too thrilled that it has come to this, but I am glad that they will get looked at. We were told by the doctor today that when a child has bad decay and has to undergo chemotherapy (as Parker will have to) they usually pull those teeth. This is definitely something that we don't want. It will be up to Dr. Aiuti what he wants done so let's just hope that the dentist visit comes and goes with some good news.

Parker got a nice visit from his Nonna and Nonno today. Mommy and daddy went out for a few hours and we booked my parents for the afternoon. I know that Parker had a great time and I am very glad that he got to spend some quality play time with them.

Parker has started choosing a couple of his Christmas toys to be his favourites. He really likes his Grand Piano by Fisher Price. He loves hitting the keys while he stands in front of it. It truly is a great toy and I would suggest that if you are looking for something that will really stimulate your one year old that you should check it out. Parker is also enjoying his farm and truck that he can ride on himself. Parker has started to be able to drive himself around the main floor using his feet to push himself around with. He has even figured out how to drive over to the stairs, get off of his truck and then start climbing the stairs. I was pretty impressed to see that this morning. He is still not very fast on his car but give it a couple of days and he will eventually begin driving faster than a tortoise.

Check back in tomorrow when I will definitely have more pictures of Parker to share with everyone.

Newsfeed in regards to ADA Deficiency

Long-Term Safety and Efficacy of Stem Cell Gene Therapy for ADA-SCID [Abstract #200]

Severe combined immunodeficiency (SCID) is caused by a severe genetic defect often found in newborns. Because the immune system is so severely compromised, exposure to even benign germs can result in serious or life- threatening infections like pneumonia, meningitis, or bloodstream infections. The condition must be diagnosed and treated quickly to prevent serious complications, and doctors continue to struggle with often ineffective treatment options. In this study, a team of Italian researchers found that the use of stem cells may effectively fight SCID caused by a deficiency of the ADA gene (adenosine deaminase), which is critical for the immune system to function properly.


Previous research has shown that immune function has improved when patients were given an autologous hematopoietic stem cell transplant (HSC), from the body's own bone marrow, combined with the ADA gene. The current phase I/II study treated eight ADA-SCID children (ages 7-67 months) with HSC conditioned with busulfan, a treatment that helps with the engraftment process. After following patients for an average of three years, researchers have seen no adverse events related to the gene transfer. In fact, they have observed that the stem cells have successfully integrated into the patients' marrow, giving rise to genetically repaired blood cells.

In the six children with a follow-up of more than one year, white blood cell counts progressively increased and T-cell functions normalized. In addition, tests found the presence of antigen-specific antibodies (proteins that help the immune system identify and fight bacteria and viruses). In five patients, levels were high enough to discontinue supplemental antibody treatment.

"We feel that these data confirm the safety and efficacy of gene therapy in improving immune and metabolic function in children diagnosed with this form of severe combined immunodeficiency," said Alessandro Aiuti, MD, of the San Raffaele Telethon Institute for Gene Therapy in Italy and lead author of the study with Maria Grazia Roncarolo, MD. "This may represent a viable solution to reduce the mortality rates associated with SCID in newborns."

At the conclusion of the study, all participants were healthy, with no severe infections, up to six years from the treatment. Researchers noted that because the ADA genes had sustained activity in the blood cells, the children's growth and development has continued to improve.

The treatment is funded by the Italian non-profit Telethon Foundation, a major charity that raises and distributes funds in Italy for biomedical research on genetic diseases, and has recently attained Orphan Drug status from the European Medicines Agency (EMEA).

Obtained from: http://www.medicalnewstoday.com/medicalnews.php?newsid=58621&nfid=rssfeeds

Merry Christmas

Well, it is actually boxing day but I was kind of busy yesterday and getting to the computer to write the article was just not going to happen. I must say that yesterday was one of the best Christmas' I have ever had. Yes, this holiday season was not what I have been accustomed to, but I did get to spend it with my son Parker, my wife and her parents. We even made a quick trip over to my parents so that everyone there could see the little guy through the window of the car.

Of course my wife got up nice and early on Christmas morning so that we could begin the festivities before the sun came up. Parker was the next to wake and the three of us plotted into the guestroom where Parker's Nana and Granddad had spend the night. "Merry Christmas", she said with Parker in her arms. "Wake Up, so you can come downstairs, Santa is coming."

We had been given a suit from a friend that we could use since Parker was unable to go to the mall to have a picture taken with Santa Claus. So, when everyone had finally made it downstairs I bearded and gowned up and went downstairs to let Parker know what a good boy he has been this year. We took some pictures and some video as Parker stared at his daddy in a white beard. He smiled and pulled at the beard thinking this may just be some particular version of peek-a-boo. Soon after, Santa gave Parker and Mrs Claus a kiss and made his way back upstairs when Parker's daddy finally returned to the main floor where we began to distribute gifts.

This year, and the many to come are primarily about Parker and that is where the focus was during the gift giving. Parker had quite a few gifts under the tree from mommy and daddy, his aunts and uncles, grandparents, as well as friends and one large one from Santa. It was quite funny watching Parker open his gifts. I guess it is the perfect age for your first Christmas because he is almost a year old and although he does not understand what is going on he is old enough to help pull at the paper and smile at the bright objects that exist beneath the plastic packaging once unwrapped. Parker sat in mommy's lap while the two of them tore back the wrapping paper from his gifts. The funny thing was that for the most part, Parker was most intertested in playing with the paper in which his mommy and him had just accumulated.

Parker got quite a few different things for Christmas. He now has the complete Little People Farm from Fisher Price as well as his own piano. He loves every single gift that he got and is very thankful for them. It took a while but daddy finally got all of the toys out of the box (untwisting each piece from the box is quite time consuming), put on every sticker, inserted every battery, and finally snapped together all the pieces. Parker's playroom upstairs is now complete.

What did Santa bring Parker? Santa brought him a Little Tike's train that he could ride on, complete with a track. This way daddy does not have to cart Parker around the main floor on his Pooh-mobile. The only trouble is that Parker has not figured out yet that he must press down on the peddle with his foot so that the train moves ahead. So, instead of daddy pulling Parker around upstairs he walks beside him as Parker sits on his train applying pressure to his foot.

Of course, what would Christmas be without a Christmas dinner. The four of us had a wonderful prime rib roast, with mashed potatoes, green beans, and Parmesan cheese pop-overs. Topped off with a bacon and mushroom sauce. It was definitely delicious and a great way to end a a wonderful Christmas with Parker. I have decided to use the leftovers to make a prime rib and mashed potato pie for dinner. I am not one for wasting food.

I know that not everyone was able to have such a wonderful Christmas this year, so I am extremely thankful that I was and I am extremely appreciative of all our family and friends who were a large part of our first Christmas with Parker.

My Gift on Christmas Eve

It is early afternoon on Christmas Eve and I have to say that today does not really feel like Christmas. I have the blinds shut in my office so that I can see my screen without squinting. It is quite warm out today and my grass has yet to turn yellow from the cold. Most of all it does not feel like Christmas because I am not spending it the way I have in the past. However, I take what God has given me and no matter how hard it is to deal with at sometimes, I find a way. Maybe I don't always deal with it the most effective way but I swear to the Lord I wake up each morning with the intention to be the best person I can be.

This year I was graced with the birth of my son Parker. I am so thankful for this gift and no matter what is under the tree for me tomorrow morning, it will always pale in comparison to what he has given me. I was quite upset yesterday and as I lay in bed while my wife tried to put Parker to sleep I decided that I would go and hold Parker so that I could forget my troubles for even just a short while. We sat in the glider chair together as he struggled to find a comfortable position on my shoulder to nestle into. It took a while for him as every few moments he would use his hands to push himself away from my shoulder so that he could change the direction of his head. Every few turns he would lean back far enough that he could get a glimpse of where he was. He would use his fists to rub his eyes, take a look at my face and then lay his head back down on my shoulder. This went one for sometime, and eventually I started singing to him in hopes that his restlessness would begin to subside. I knew by the third verse that my voice had calmed my son and he was now asleep. Instead of putting him in his crib I decided to keep singing to him in hopes that I could forget my troubles from earlier that day. Eventually I did put Parker down to sleep and although my worries returned shortly thereafter, I was happy to know that I was able to appreciate my gift even when things felt gloomy.

Parker's Toothbrush

I apologise for not writing until now but my Internet has been down for the past day. We did make our trip to Sick Kids this morning in our own car. It was the alternator and I now have a new one that keeps my battery nice and charged.

Our trip to Sick Kids was primarily uneventful. It was scheduled so that Parker could get his ADAGEN injection which will keep him going until Wednesday when we head back down there for Clinic. I know it is not Christmas yet but it was our last trip to Sick Kid's before Christmas so I would like to take the time to thank everyone from Sick Kid's who has helped us with Parker this year. Particularly a very special thank you to Dr. Grunebaum, Brenda, Kim and Dr. Sean, the four of you have made our trips to Sick Kid's and our dealings with ADA deficiency a much more bearable one. We wish you all the best during this holiday season and we are very appreciative of everything you have done to help us along the way.

I decided to repurchase one of the infant toothbrushes that slides on your finger in hopes that Parker will allow me to brush his teeth. I had mentioned that Parker does have what looks to be decay on one of his top teeth. We do think it is because of his medication, but we are trying to keep it from getting worse by being diligent with his teeth brushing. I have always been in charge of brushing Parker's teeth and recently I switched to a baby version of a regular toothbrush. As a result, Parker stopped enjoying getting his teeth cleaned. Every brushing ended up being a battle between me and my son in which I lost. Very similarly to that Munsch book, Thomas' Snowsuit. So, yesterday I decided to retry the old tooth brush. I now recall why I stopped using it, as my fingers have become numb from being repeatedly bitten. Regardless, I must help Parker fight tooth decay.

My wife and I are very pleased the past couple of weeks with how well Parker has been sleeping. When my wife was pregnant she had bought a crib sheet from Pottery Barn and I cannot believe the reaction that Parker has had to it. Parker sleeps 12 hours straight at night and does not complain at all when it is time for his nap. I am not one to give out free advertising but if you need good sheets for your infant or you want them to get a good nights sleep, try them out. They are extremely soft and if Parker sleeps well, we sleep well.

My wife has gone out and Parker is down for a nap so it is probably an opportune time to try and get some studying done. So, I wish everyone a good day and if you are not planning on returning until after Christmas, Merry Christmas.

Beep... Beep... Bump

I definitely feel motivated to write today with all of the comments I have been noticing lately. I know that many people have been having difficulty leaving messages with the new blogger but most of you have worked it out.

I noticed yesterday on the way to the hospital that my battery light was coming on in the car. I did make it home yesterday without a problem but I decided that I would take my car over to my best friend's tonight since her husband is my mechanic. They live only ten minutes from me but about half way there my radio went off followed by my signals, and then my headlights. A minute later I had quite a few lights lit up on my dashboard, but only for a moment. Why? Because it was then that all the lights went out and all my gauges stopped working. Regardless, I did make it there and in a day or so I will have my car back with a new alternator. Nana and Granddad came over to pick me up and were nice enough to lend us their car until I get mine back. I am sure glad I have Laura and Craig as friends.

I was thinking this morning as I gave Parker his Septra that I think the blackening on the one tooth may be decay due to the Septra. I always squirt it into that side of the mouth and I am pretty sure Parker does not lick his teeth clean after I give it to him. So, today I decided to give Parker his Septra on the other side of his mouth. I guess it would be easier if Parker co-operated a little more when I was brushing his teeth. I guess I cannot put sugar on his toothbrush.

Parker really enjoys spending time upstairs. He loves getting carted around on his Winnie the Pooh scooter and gets a kick out of using the posts to help him stand while he looks around upstairs or downstairs.

I decided that it might be a little easier to take Parker on rides around the upstairs if I were to tie a string to his scooter and pull him around. Parker is accustomed to daddy crawling behind him as he pushes him from room to room. Parker's balance is quite good and I have yet to see him even remotely look like he is going to fall off his scooter. For that reason, I have no problem pulling Parker around at a quick pace as we explore the upstairs.

As for the posts on the railing upstairs... Parker does take a beating once in a while. He is quite confident holding on to them with one hand as he looks around; however, sometimes he does lose his grip and bumps his face on one of the posts as he makes his way to the ground 75.5 cm below him. He usually cries until we pick him up and scold the post for being bad to Parker. Bad, bad post, we say. Parker laughs. The very next thing we do is let him try again. If you fall off your bike, it's best to get right back on. Parker is a tough guy. He is a monkey you know.

Well, the tough guy has head up to bed. The monitor is on and I have yet to hear a peep out of him so I think it is safe to say that he is still quite tired from yesterday.

IVIG Done - IgG Topped Up!

So, I know that many of you have been sitting at home at your computers just pressing F5 on you keyboard as you anxiously await to find out how Parker's IV went today. It could not have gone any better.

We got to the Medical Short Stay Unit at Sick Kids just after nine in the morning and we headed to our room as we waited for our nurse. She was very nice, which definitely made it easier for us. She began by taking his weight and height as well as some vitals. Parker weighed in at 11.560 kg (25 lbs 6.9 oz) placing him in the 90th percentile and his height was measured to be 75.5 cm. The weight was not so surprising as that pretty much goes with what we are used to but we do not normally have Parker's height measured. That said, I did mention at the table during dinner last night that I thought Parker had grown in length quite a bit as it was easily noticeable as he was in his Exersaucer and his knees were bent. With this length measurement Parker is currently at the 60th percentile for his height. I have updated his measurements on the right side bar and have decided to add his percentiles in brackets.

I know that everyone is much more interested in how well Parker's veins were for the IV and I must say they completely co-operated. Parker and I went into the IV room where they insert IVs on more difficult patients with our nurse in addition to one other nurse. They checked both of his hands to see if there was a vein worth trying and voila they found one. As always, I held Parker down so that he did not compromise the attempt to insert the IV into his vein. Yes, Parker cried but the vein worked and in a single poke they were able to take the necessary blood and saline block the IV. It did not take eight pokes over four different limbs and his head, just a single poke in the back of his hand.

As soon as we were done securing the IV to his wrist I scooped up my little boy and we danced around the room. As quick as you could say booboo Parker stopped crying. Parker and daddy, with the IV pole walked back to our room where mommy was waiting with Grand-dad and Nanna. Although he had not cried in a good minute when he saw his mommy my tough little boy cries for her. Can you blame him?

The hard part was done but we were still not clear of the many occlusions that we are used to. Each occlusion results in the IgG not being able to enter his vein without resistance. If the pressure is to great and his blood pushes back against the fluid coming in it may cause an occlusion. Believe it or not we encountered only one and it was a result of Parker biting on the IV in his hand. Once he stopped the little blue box on the IV pole stopped beeping and all was quiet again.

We received a visit half way through from Parker's favourite nurse, Brenda. She came by to give him his ADAGEN injection and tell him how cute he is. We also got to ask her a few questions as she is accustomed to getting from us. The main question today was in regards to some darkening on one of his teeth on the top. I was concerned that it baby be decay and although she could tell us that it was, she did say that SCIDs do generally have more cavities than the average person. She recommended regular brushing of his teeth. I do brush Parker's teeth and I plan on increasing the number of times each day to at least two.

Parker wants to thank his Nanna and Grand-dad for keeping his mommy and daddy company while at the hospital today.

IVIG Today

Today we are heading down to Sick Kid's for Parker not only to get his ADAGEN injection, but also to have an IV so he may receive IgG. It helps him fight off infection and he is currently a little low in IgG numbers.

I will be posting an article this evening on today's events but if you are interested in knowing how the last IVIG went you can read this article.

One Week Until Christmas

Yes, I put the light on the house over a month ago and the trees went up around the same time. There are 18 little doors open on the Advent Calender and 18 little chocolates sitting in my tummy. There are only seven days left until Parker's first Christmas.

When we were at Sick Kid's in Toronto we met a couple of other families who had babies with Severe Combined Immunodeficiency. It is not normal for there to be three families with SCID on the Bone Marrow Transplant Unit at the same time but early last year there were. Each child had a different form of SCID and as a result, the other two's treatment would be a bone marrow transplant. My wife became good friends with both mothers as they were literally the only people that she knew who could conceptualise what she was going through with Parker.

Both children have now had their transplants and both families have been rejoicing the past while that they would be home for Christmas to spend time with family and friends. For many, it is a time of year to give thanks and to celebrate with everyone you love. I remember when we took Parker home from the hospital back in early June and how thankful and happy we were. I can only imagine how these mothers felt as they pictured themselves going home for the holidays.

I had mentioned over a month ago that we were so excited about Christmas this year because we were going to get to spend it with family. Parker was going to be going to his Nonna's and would be able to see his aunts, uncles and cousins on Christmas Eve.

Sadly, it was recently decided that this would not be a viable solution. Family is sick, and the risks are just too great with Italy just around the corner. Of course my wife is quite upset, and I am disappointed to say the least as we were looking for some normality around the holiday season. However, what has grown normal for us and the ones around us will continue to be just that throughout this holiday season.

It is a week before Christmas and both families who had planned to be home for Christmas will unfortunately not be. One of the drawbacks of having a bone marrow transplant is something called graft versus host disease (gvhd) and it can have extremely devastating effects if not treated correctly. GVHD has unfortunately taken its toll during this holiday season and has caused these families to spend Christmas in such a way that has grown normal for them over the past year.

I have learned a lot over the past year and I know that I will learn much more as we progress through this journey. What is normal for each and everyone of us is different. Most of us learn to cope with what God has decided will be normal for us. I have come to realise that I can dwell on what is normal for me or I can embrace it and make the best of it. That is what I choose to do. During this season, I will remember that there are people who's version of normality is not as bright as mine.

Overtired Monkey

I have noticed lately that the number of people visiting the site has dropped a little bit but I have decided that it is mainly because of the holiday season. This is the first Christmas and Hanukkah that the site has been up for so I really have nothing to compare it to. Regardless, I have decided to write an article today, and hope to not get into the rut of only writing every other day as it seems I had been doing.

I had to go out today and we decided that Parker and mommy would spend the time at Nanna and Granddad's as it was a short distance away from where I had to be. With Granddad and Nanna living in a new complex and with them not spending time around anyone that is sick we felt it would be okay for Parker and mommy to have a change of scenery.

From what I heard, Parker enjoyed himself; however, he was quite tired by the time I came to pick him up. His nap time had come and gone and the crib at Nanna's is not in working order. We were hoping to keep Parker awake until we got home (10 minutes) but unfortunately he fell asleep with under a minute to go. When we did get home, I picked up Parker and brought him upstairs to his crib. I was surprised he stayed asleep all the way to his room. When I got to his room and took off his boots, Parker remained asleep. Then, I placed him in his crib and started to undo his jacket. Parker remained asleep. Then, I pulled his arms out of his sleeves, first one and then the other. Parker still remained asleep. As I looked at Parker lying on his jean-jacket I figured I got this far without waking him; I should be able to pull the jacket out from under him. So I did.

Parker cried, and cried, and cried. In the next two hours, Parker polished off over 10 ounces of formula in hopes to relax him so he would fall asleep, but every time we was placed in his crib he would cry. The poor little guy was so overtired that he did not want to go to sleep and only wanted to be held. His poor little eyes were so droopy and red from crying. We left him to cry it out, but it did nothing.

As a result, we picked up Parker, threw his jacket on him and put him back in the car. Within two minutes the little monkey was asleep. We decided to spend the next 90 minutes doing errands so that he could sleep. Eventually, we ended up at my parents where they were having some family and friends over. We picked up some food to take home and everyone came to take a look at the little guys through the window. Yes, Parker woke up from his nap but it was to quite a few smiles. I am sure he did not mind at all.

It is now quarter to eight in the evening and Parker is just heading up to bed since he had a late nap. Let's hope that it won't be difficult for my wife to get the little guy to bed tonight.

Eleven Months - Big Boy!

Wow, posts in back to back days. I feel bad that I do not do this as regularly as I used to.

Most of you have probably noticed the subtle differences in this site by now. First, the colour scheme is different using blue instead of green. The second thing that you may also have noticed is the way the archive now works. Yes, it tells you how many articles I have written in an given month, but it also allows you to drill down into a month by clicking on the arrow beside the month. What does drilling down do? Well, it will display the articles for that month and let you choose a particular article to go back and read instead of having to search through a particular month of articles. Other than that, the rest of the changes affect the publisher of the blog, which would be me.

Today being Friday, we took a trip down to Sick Kid's so that Parker could get weighed in for the week and receive his ADAGEN injection. With Parker gaining 0.75 lbs last week we figured that his weight gain this week would be very small or non-existant at the most and we were right. Parker weighed in 10 grams less than less week. Which in the grand scheme of things is what we expected and is really no different than his weight last week.

Something else is exciting today. Parker turned 11 months old today. One more month and he is going to be a year old. It honestly just feels like yesterday that Parker was born. My wife and I, along with Parker watched the video that I took when my wife went into labor. We also watched a video that I made with Parker and his stuffed animals before he was diagnosed with ADA deficiency and was living in the General Paediatrics ward in late February.

For those of you who we have not told yet, Parker will be going in for an IV on Tuesday to get his IgG topped up. We, with the doctors have chosen to do this instead of getting Parker vaccinated since it is a reliable line defence and he would have to get re- vaccinated after his gene therapy anyways. We have not had much luck with Parker and IVs. In the past, he did not have the greatest veins for IVs and it was always quite the ordeal for him to get one put in. Everyone is usually quite upset by the end of it. Let's hope that it goes better then it has in the past.

Mom is currently putting Parker to bed. We thought it was going to be difficult since he was quite stimulated before bed but I have yet to hear a peep through the baby monitor. My wife has me turn it on when I come downstairs so I can hear her if she is calling me.

Wait a minute...

Silly me, I forgot to put on the baby monitor. Just did. It seems quiet upstairs so I guess everything is okay. I guess she will figure it out when she proofreads my article for today. Have a great weekend, and if you are celebrating Hanukkah, Happy Hanukkah.

How does he stay healthy?

So, I finally am using the new Beta Blogger. For those of you who are not savvy with computer lingo that means that I am using a version of Blogger to maintain this website. I still have every intention to switch to the new www.scidada.com domain in which I will write all the software for but until then I figured that I would give this new version of Blogger a test drive. It will at the very least give me ideas for when I create the new site.

I seem to be posting to the blog every couple of days instead of each day and I apologise for that. The reason is that I have set a schedule for myself for my studying as I want to write the SCWCD 1.4 Exam before I go to Italy. With that and wanting to spend as much time with Parker I sometimes am strapped for time. We also get the occasional visitor here and since I do all of the cooking and I want to make sure our visitors (even if they are only --not in a bad way -- our parents) always enjoy what they eat. So these are my excuses.

On the topic of visitors we did have a nice visit with my wife's aunt (Nanna's sister) and her husband this afternoon for lunch. They had heard so much about Parker and always stay abreast of what is going on through the blog that we thought it would be nice to have them over with Nanna and Granddad. I made quiche and a nice winter salad and everyone including Parker sat at the table for a nice lunch.

Now, I know that some of you may be wondering how we can have visitors with Parker and his condition. For that reason, I thought I would explain. Parker spends most of his time at home in an environment in which we control and refer to as severely germ restricted. Does that mean that Parker is in isolation at home? Absolutely not. What that means is that we make sure that any possibility of there being some form of fungus, bacteria or virus that Parker could come into contact with is minuscule. How do we do that? Obviously we keep a very clean home. You won't find us on a TLC show about dirty homes. Secondly, we make sure that we stay healthy. The best way to do this is to sanitize our hands regularly and to stay away from people that are or could be sick. That is why we refrain from being around children. Many children that go to school or are in daycare are around all kinds of germs and they do not necessarily clean their hands regularly to rid themselves of them. This is why my wife and I do not see our nephews very often. Lastly, and the most obvious one is that we do not let people into our home who have recently been sick, are sick, or have a sick person in their care or at home. Just because they are not currently displaying symptoms of being sick does not mean that they are not. Oh, and of course. If we must bring Parker somewhere like the hospital, not the mall, he is always under his shield. Why does Parker not wear the shield at the mall? Because he does not go to places where there are a lot of people- especially a mall!

What about us? Do we go to places like the grocery store and the mall? Well, of course. The difference is we are always on the look out for someone who is sick, we do not go to the mall or grocery store during the busy times (as it makes the former much more difficult) and we always carry at least one personalised sanitizer in our pocket to keep our hands clean after touching money, a shopping cart or anything else that could house germs. We do not live in isolation, nor does Parker. We are just extremely aware of our surroundings and realize that in order to live we need to do certain things.

So I hope that answers some people's questions about how we are able to interact with the rest of society and still refrain Parker from catching an infection. Remember; however, Parker is able to fight off infections at the moment if he did become sick. He is doing extremely well with the Enzyme Replacement Therapy. It is just not a long term solution. The goal is to keep Parker healthy and stimulated until we go to Italy for Parker's Gene Therapy Treatment.

A Better Sleep

I know that I should have written yesterday or maybe earlier today, but I have been so busy lately with Parker and my studying that I could not find the time to write until now.

The past three nights Parker has slept right through the night. Okay, maybe not exactly. At least we did not have to get up during the night or during our wind-down time to put him back to bed. We have decided that if he does wake during the night and begins to cry or yell that we will give him a minute or so to calm himself down. It has worked. Of course, we can always tell if something is seriously wrong since we have heard pretty much every type of cry from him that is humanly possible. With that, we are much more rested. Well, if I decide to stay up late to watch CSI or a movie I am not as rested as I could be, but that has nothing to do with Parker!

The second thing that we decided to do -- well more me then my wife -- is remove Parker's early morning bottle from his feeding repitoire. We are not putting Parker on a diet, since no baby should be on a diet, but he does not cry for a bottle at 7am, he only wants to play. As a result, we play with Parker when he gets up and then give him his breakfast close to 8am followed by his first bottle around 10am.

I have to check when babies are supposed to start using a sippy cup because Parker is not that interested in one. We have even purchased a sippy cup that has a nipple on it in hopes that he may like it better. Regardless, he has chosen that he would rather have his formula from his bottle.

On a non-feeding note, Parker has started using the poles on the banister for holding onto while he is standing. He loves standing in the loft, holding on top the rails as he stares down smiling below. He has really gotten good at standing with support. He feels very comfortable in that position and I think that it may be his preferred position to be in. Today, while holding onto the ottoman in our bedroom he circled around it while standing as I moved the toy that resided on top. His legs are definitely getting stronger.

Lastly, I know that many people have heard me complain about blogger and even though they have made some improvements that are currently in the beta testing stage I continue to fight with it or at least their server on a regular basis. My latest complaint is that I have noticed that some of the members are no longer members. For that reason, if you notice that you have been re-invited to be a member of this blog please just click the link so you can continue to write messages.

Busy Weekend

I have picked the images for the article and I know what I want to write about; so, I have sat myself down at the computer to write today's article. The good thing about taking a couple of days to write an article is that there is usually something of substance to share.

I shall start by talking about the events that occurred to Friday. As most of you are aware, Parker receives his ADAGEN injections every Tuesday and Friday and this past Friday was no different. A couple of things occurred that are worth mentioning. First, Parker's weight. Parker gained 12 ounces this past week, three quarters of a pound. That brings Parker's weight to 11.475 kg or 25 lbs 3.92 ounces and places him not only at the 90th percentile for his weight, but also a number 5 diaper. Yes, we purchased number 5s yesterday for Parker at Walmart. Mr. Stinkerbobinker's poops have started to become a little difficult to maintain in the number 4 diaper so the change was necessary.

WIth Parker's weight increasing I wonder if it is going to have any hindrance on him starting to walk. Parker is a few days away from 11 months and loves to cruise and walk while he holds on to our hands. When I try to make Parker bear most of the weight himself while holding my fingers I can see his little (for the sake of a better word) legs wobble. I know that most babies would also be a little wobbly at the knees so I guess I will not worry too much about it.

Secondly, we were told by one of the immunologists that they were very pleased with Parker's reaction to being on the enzyme replacement therapy. His lymphocyte numbers are higher then the controls. What does this mean? It means Parker is doing better than expected. With this information, I decided to check a research paper I had on the "Long Term Effacy of PEG-AGA". It contains information about nine patients, including the highest values that the patients reached while being on PEG-ADA. I was happy to see that Parker, if compared to the nine patients would have higher numbers then all but two patients in both categories. The two patients that had greater numbers of B-cells were not necessarily the same patients that had greater number of T-cells. Again, I say this is important because we know that Parker is able to produce cells when given the opportunity to do so.

We did not spend our whole day at Sick Kids, but came home for the afternoon and evening so that we cold have Parker's Auntie Natalie and Uncle David over for dinner. Parker really enjoys his visits with his Auntie Natalie and we always enjoy a visit from our best friends.

Daddy decided to make a nice dinner for the six of us that consisted of Leek and Potato Soup, Stuffed Pork, Asparagus and Garlic Mashed potatoes with Gruyere Cheese. It was a wonderful dinner, if I must say so myself, but the time we got to spend with our friends was definitely the high-light of the evening.

Parker really enjoyed himself because he got some very special gifts from his Auntie Natalie and Uncle David. What was also really special was the gift the Auntie Natalie's grade one class made for Parker. Each student drew a picture and wrote a sentence for Parker that Auntie Natalie turned into a little book for him. In addition, they sang Old Toy Trains and gave it to him on a cassette for him to listen to. That was so sweet of them. We are so lucky to have such wonderful friends and Parker is so lucky as well.

Lastly, Parker got a visit from his Nonna and Nonno yesterday. Mommy and Daddy went out for a few hours while they babysat for us. Parker had a great time with them and showed his Nonna and Nonno how strong he is. Afterwards they stayed for Sheppard's Pie one of Nonno's favorite foods.

More than Yesterday

Yesterday I had reported that there was pretty much nothing to report. Today is different. There are a few things that Parkers has started to do that I would like to mention.

A few days ago, we noticed that when you made a grunting noise at Parker he would make the same noise right back at you. Now, I would like it alot better if when I said "Hello, little man" he would say hello back, but I will take this as his form of two way communication. It has pretty much become a game and whenever we feel like getting a kick out of our son we grunt at him.

Parker has been pulling himself up using the toy box in his room and the sofa on the main floor, but other than those two things he does not have a lot of freedom to choose what he wants to use to pull himself up with. That is not to say that he does not spend a lot of time standing as he holds on to these two objects but other than watching him throw his toys on the ground that reside on his toy box he does not do much when he is standing. Yesterday, I decided that while he was standing at one end of the sofa I would put one of his toys at the other end. In a matter of a couple of seconds, Parker had walked over to the end to throw his toy on the floor while holding onto the sofa. This is something that we had never worked on or given him the opportunity to do before, but Parker had no problems completing the task over and over.

Lastly, by now you have figured out that Parker does not have full range of the house. But, the last couple of days I have let him crawl around off his play area and follow me to other areas on the main floor. Yesterday, Parker followed me into the hallway over to the stairs. I figured this would be a great opportunity to see how Parker would do on the stairs. It took a while for Parker to figure it out, and he needed help from his dad for the first five or six stairs, but Parker finished and completed eleven steps in total, half all by himself. Mommy was not home at the time and did not get to see it, but when she got home and Nanna and Grand-dad came by, Parker showed them that he knew how to climb stairs. So I think that we will give Parker the opportunity to climb the stairs a couple of times each day.

Now, this is not new, but I am happy to report that Parker absolutely loves riding on his Winnie the Pooh car. He has great balance and doesn't need daddy to hold him while he gets pushed around the upstairs from room to room.

Tomorrow will be another fun day for Parker as his Auntie Natalie and Uncle David are coming for a festive dinner along with Nana and Grand-dad. Parker always loves seeing them and especially loves all the nice messages Auntie Natalie leaves for him every day!

Not Much to Report

It has been a couple of days since I last wrote and I do apologise for that. I have been quite busy the past few days and have been unable to write.

Parker slept through the night without waking up even once last night. We were very pleased because the past couple of nights have been a little more hectic. Parker is going through his sucky-pants phase and we think that is what was causing him to wake up throughout the night.

Parker's diaper rash has cleared itself up and we are happy for that. I can't imagine how uncomfortable it must be to have cream on your bottom all the time. I guess if you are used to it you can live through it.

Parker has to have his Septra shortly so I am psyching myself up for that as I write the article. To be honest, giving Septra is not nearly the chore that it used to be. When I took over giving Septra from my wife a few months ago it was because it was a regular occurrence for Parker to gag on his Septra and sometimes even choke on it. Now, it is two squirts during the previews of the Backyardigans and we are done. I usually let him watch the Go, Go, Go video a couple of times afterwards before turning the television off. Last time I checked we will have to go to Shopper's Drug Mart to order a new bottle of Septra as this one's contents are diminishing.

I do apologise for not having more to write today but fortunately or unfortunately, I have nothing more exciting to say. With that I bid everyone a good day and please visit tomorrow when I promise to have a better article waiting for you to read.

Daddy has his Flu Shot

I can hear Parker fighting with his mommy as she tries to feed him in the kitchen. Parker is very funny during meal times. Sometimes he likes to eat, and others he doesn't. This morning, during breakfast I had no problem feeding the little guy, but then when I feed him dinner tonight he will probably be a little more finicky.

I found a recipe for Hungarian Goulash so I decided to make that with dumplings for us and Parker's Nanna and Grand-dad tonight since they are big fans of it. Unfortunately I was unable to locate Hungarian Paprika today so I had to make a small modification. Let's see how they like it. Me? I have never had it before so I don't know what it is supposed to taste like.

I had my flu shot yesterday. Nanna, grand-dad and mommy all had theirs already, and I still had to get mine. I had never had one before, mostly because I am terrified of needles. But I figured with everything that Parker has to go through I cannot complain. So I sucked it up yesterday, went to the IDA and had my shot. To be honest, I did not feel a thing. Everyone else said that your arm hurts quite a bit the next day, but I cannot even tell where I had my shot. I guess everyone is different. The best part of the whole thing was the free cookies and coffee afterwards. Not sure if anyone has figured it out, but I have put my diet on hold for the past few weeks. Let's hope when I step on the scale I am not too shocked.

Parker went for a ride today on his Winnie the Pooh. I must say that he is getting really good at keeping his balance and knowing what to do as I push him around the upstairs. He always holds on and keeps his feet planted firmly on the foot rests. Parker is not tall enough for to ride on it by himself. His feet do not reach the ground so for the time being I will push him whenever he wants to. Winnie the Pooh converts into a rocking horse (well not really a horse) so maybe I will let him try that out in the next couple of days.

I just checked with my wife and Parker's diaper rash is improving with the medication that the doctors prescribed for him. I told you that my wife was a professional at helping the little monkey through rashes.

Old Toy Trains

My apologies for not writing yesterday. I was helping Parker's Nanna and Grand-dad put some furniture together in their new condo and with Clinic in the morning there was not much time.

I have to say that the weather has been very crazy the past couple of days. It rained all day yesterday in and around Toronto, last night and through the night the wind was loud and powerful, and this morning as I looked out of my office window I saw the snow fall from the sky.

I suppose I should begin with how Clinic went. We were hoping to hear that we had a definite date set for our trip to Italy, but we did not get that. The most we got was it will most likely be January and they would be surprised if it was later than February. I am sure that it will not be long before we hear of our actual date.

We did get the results of Parker's flow cytometry test back. The test is used to check for particular receptors on cells so that they may count and differentiate the types of the different lymphocytes that Parker has. Since starting his enzyme replacement therapy Parker has continued to have his T and B cells increase in numbers. Parker's numbers in all of the lymphocyte categories have continued to rise. I believe that it is important that Parker show positive results for this form of treatment so that when he does take part in the gene therapy trial his body is capable of producing the correct types of cells when given the opportunity.

Lastly, Parker has developed a diaper rash. We are not too worried about it since my wife is a professional at getting rid of them. He never seems to have one that lasts for any extensive amout of time. However, they did say it looked like a fungal rash so they prescribed him an antifungal cream with some steroids in it to apply twice a day when he is being changed. It is applied underneath the Zincofax that he normally has applied. Give it a couple of days and my wife will have his rash completely gone.

For those of you who live in the Toronto area, there is a radio station that begins playing Christmas music in late November and we have been pretty much listening to it whenever we are in the car. I mention this because there was a song that I heard and liked called Old Toy Trains by Roger Miller. I downloaded, and memorised the words so that I could sing it to Parker when I need to put him to sleep. Well, I got the opportunity yesterday in the car on the way home from clinic. My wife had to go into a store and since we cannot bring Parker into a store with us I drove around the parking lot singing Old Toy Trains. It put Parker to sleep and kept him a sleep for over twenty minutes. This morning, when my wife went out I decided to take Parker to the computer and play a few different versions of the song that I had gotten from Limewire. By the time the third version had started to play, Parker was nestled up against me sound asleep. He stayed that way for another twenty minutes until my wife came home and told me to try and bring him upstairs and place him in his crib. It looked like it was going to work until he opened his eyes when I lay him down. I brought the little monkey back downstairs and he is now with his mother having a bottle.