Tuesday, February 27, 2007

I promised.

See. I promised. Two articles in two days. To be honest, I actually miss studying. However, I did promise my wife that I would not pick up a computer book for a week, even for recreation. I have been caught a couple of times reading a book on EJBs but I put it back as soon as I was told.

We took our regular Tuesday trip to Sick Kids today for Parker's ADAGEN injection. Our immunologist came to see us today in clinic to give us some letters for Dr. Auiti and ourselves. We also discussed some recent discussions that he had with the Italian team about Parker. Everyone at Sick Kids is extremely happy with how well Parker is doing and if I may quote our immunologist, "Parker is the Poster Child for ADA Deficient SCID".

My wife and I, along with our families are getting quite anxious and just want to get Parker to Italy so that we may start the tests and then his actual treatment. Unfortunately, we will just have to wait until our flight leaves in the next couple of weeks.

My wife did speak with the health reporter from the Toronto Star and they will continue to cover our story. There will most likely be a story in the Star prior to our departure in addition to a couple while we are still in Italy. Of course, I will let everyone know when they may look for the stories in the Star. They are always very informative and we appreciate their efforts and work very much.

I had mentioned that yesterday Parker started using a sippy-cup for water. I thought that I would let him try using a cup for toddler that contained a straw. I did and Parker loved it. He enjoyed chewing on the straw and in between chews he would take a sip of the water. We are definitely quite pleased with his new found skill.

In the past couple of weeks, Parker has become interested in the blinds on the window adjacent to the television. He grabs at them and tries to rip them apart. Since this is not something we want, I decided to pull the blinds up, wash the window and sill with antibacterial soap and let him play at the window without having to worry about him wrecking the blinds or getting anything on his hands that may make him sick.

I apologize that there are no images for you to look at today but I promise to have some for tomorrow's article. And yes, there will be one.

Monday, February 26, 2007

Parker Uses Sippy-Cup and Dad Passes Exam

I know that it has been quite a few days since I posted an article on the blog and I apologise for that. I had mentioned that my studying had consumed most of my free time and that as soon as I had written my exam I would once again post articles regularly. Well. I am done my exam. I wrote it this morning and scored 92.7% on it. With that I now have my Sun Certified Web Component Developer certification. What does that mean? That I can code Java for web container.

I have been studying for this exam for quite some time and I have to thank My wife so much for letting me study instead of clean or give her a break from her grueling day. I am not sure who is more happy that I have completed this exam, my wife or myself. Regardless, it is done and I can take a break from studying for a few weeks.

Enough about me. We are still waiting to hear back from Air Canada so that we may know which day we are flying out of Toronto. They have been extremely accommodating toward us and we are so very thankful for everything they have done for us. The date is narrowed down to a couple of adjacent days so we have a very good idea of when we will finally be in Italy.

As for Parker, he finally started using a sippy-cup yesterday. He usually gets a regular cup of water during his meals that he uses with help from dad or mom so that he does not spill its contents everywhere. Yesterday, while he was using it I could hear him making a sucking noise as he tried to get the water that had not yet reached his lips. It was then that I realised that he would probably be successful at sucking on the sippy-cup to get the water to come out. So, with that, I grabbed a toddler sippy-cup (it had no handles), poured water into it, placed the lid on the cup and gave it to Parker. Instantly, Parker took the cup to his lips and sucked on the end piece as he tilted it toward him. It worked. Parker had water in his mouth. He has not used it today but I think I will give him another try at it once he wakes up from his nap.

We have started giving Parker more meat lately since we were told by his dietician that he he needs meat to supply him with iron. Of course when we got home and looked at the labels of all the different foods that he eats we noticed that many of them had iron in them. His pablum is fortified with 100% of the iron that he needs so when we saw that we were not nearly as stressed as we were when we thought the only method for obtaining iron is red meat. Although we still make sure to give him some meat each day. For the very least I want him to get used to the texture.

I am not sure how many of follow Parker's growth on the right sidebar but we got updated numbers on Friday and Parker is now between the 85th and 90th percentiles for all three categories, weight, length and head circumference. We were told that most ADA deficient SCIDs are usually a little shorter than other children their age. I guess the PEG-ADA is doing its job at removing those toxins.

I suggest that everyone come back tomorrow read about the little monkey. Now that I am done my studying you can expect their to be regular postings.

Thursday, February 22, 2007

Parker's First Haircut

I had to choose between two different titles for today's article because two significant events happened yesterday. Yes, Parker did have his first haircut but I also had a thirty minute conversation with Dr. Aiuti from Italy. Since I have titled the article Parker's first haircut and for the most part the images are all about the haircut, I shall begin with that.

My wife had decided that she wanted Parker to get his haircut prior to going to Italy. When he does go to Italy he will have some conditioning using Bulsulfen and one of the side effects of the drug is loss of hair. She nor I want to see large chunks of Parker's hair fall out so we thought a hair cut will minimise the effect. Secondly, Parker's hair is actually getting into his eyes and ears so we thought that would be another good reason for a haircut.

My wife's friend and hairdresser told her that she would have no problem at all making the trip to our house to cut Parker's hair. So, with that, Parker had a visit from our friend Anna yesterday in the late morning. We were a little worried that Parker may not like having his haircut but to be honest, he did not care one bit. Once in a while he would swipe for the comb or scissors but he would always miss. As Dora would say, "Swiper, No Swiping!" For the most part, Parker sat in his high chair very happy to watch the Backyardigans on television eating his puffs!

Snip, Snip... Snip, Snip, she went. First one ear, then the next, and finally his bangs. Now, Parker is a very cute kid so we wanted to make sure his hair reflected this. So, we made sure not to get him a dorky haircut and Anna as always pulled through for us. For the most part his hair remained very similar to before, except for now he does not have his hair in his eyes or his ears. It was not until this morning that I could actually tell the difference in his hair. Parker is one cool looking dude. We did capture some video during the haircut; however, I am not sure if I will use it here. I do promise to make a new video for everyone before we leave for Italy.

week later than we had expected it was a very informative conversation. For those of you whoNow, my conversation with the doctor from Italy. Although it began with pushing our date a who have a child with ADA deficiency and will be travelling to Italy in 2007 or 2008 I am sure you are very interested in yesterday's conversation. For the most part it was about accommodations and life in Italy as we had already spoken to him about the actual procedure. He sent us a link to the hotel/apartment/motel that we will be staying in while in Italy. It is a one bedroom, a ten minute walk away from the hospital. I now have the address and website for the residence so I can map it all out on my white board using Google. They will supply a crib for Parker and with a kitchen we can go to the market and get food for our meals each day. We will have phone and wireless Internet in the apartment so you can be rest assured that everyone will be kept up-to-date with how Parker is doing in Italy. Of course, we did speak about other things as well, but for the most part I am sure no one cares to much about it. Except the other two families (from California and Eastern Canada) which I would be glad to share with them.

Air Canada is currently working out our flight and will most likely get back to us today. We do know which day we are leaving and are excited for our departure and most of all return. As we find out more information about Italy we will share it with you.

Monday, February 19, 2007

Finally, We Know!

It has been quite the journey so far but we are ready to move to the next step in our battle. Around midnight in Milan yesterday confirmation was sent to us that we may book our tickets for Parker's treatment. Almost a month ago we were told it would be at the end of February that we would be traveling to Milan and that we should prepare to leave then. Last night confirmed that. We are currently waiting for Air Canada who has been generous enough to fly us to Milan with the help of Laftansa to work out the exact date for our departure.

Once we arrive in Milan and get settled I believe that Parker will take part in a battery of tests so that there is data to compare with once the procedure has been completed. I believe that this should take close to a month and for that reason I think Parker will remain on the enzyme replacement therapy until the tests have been completed.

We have currently contacted the Toronto Star and CityTV to inform them about our recent news. They have followed the story from the beginning and we wanted to make sure that they are up-to-date with Parker's progress. If I do hear anything from them in regards to either wanting to do a story I will definitely let people know when and where they can look for it.

Now that we know for sure that we are leaving and that it will be in the next couple of weeks we have a new set of stresses emerging. As always my wife is very vocal to me about them as I analyse them quietly within. I am sure that it is quite obvious to everyone what kinds of things we could possibly be worried about. Regardless, my wife and I are extremely happy to know that we will have the trip to Italy very shortly and that Parker's treatment has finally made it to the next stage.

As I find more information out I will definitely share it with everyone that populates this blog.

Saturday, February 17, 2007

Sleeping in

Parker is currently down for his nap. He went down much earlier then he normally does but that is because he decided to wake up around five this morning. A little earlier than we have become accustomed to. Regardless, my wife was once again the hero as she got up with him and let me stay in bed until half past eight. I have been extra tired lately and I wanted to make sure that I did a little catch up today. Tomorrow I promise to let my wife sleep in.

Now, don't think that I don't normally let my wife sleep in once in a while because I do. Well, sort of. Parker and I just get so bored at 7:30 in the morning that we have to visit mommy once in a while. Yesterday, in an attempt to let her sleep in I got up at seven when Parker got up, gave him his bottle, changed quite the poopy diaper (Thanks to Mr. Stinkerbobinker) and proceeded to play with Parker for a while. Of course we did this in the room next to where my wife was trying to sleep with the door slightly open (my fault). Parker eventually made his way to the loft area outside all the bedrooms. He did eventually see that our bedroom door was open and began to make his way there. "No, baby Parker, No.", I said in a voice that was loud enough for mommy to think I was trying to be quiet but still loud enough for her to hear it. As we both got to the door, I peeked in to see her lying in bed with her eyes open. "Oh, you are awake.", I said Of course when baby Parker saw that, he went rushing in to his mommy. "But we get so lonely without you", I told her. Well, the story goes on from there. Mommy monkey got up so that the whole monkey family could spend the morning together.

I finally spoke with the other ADA family on Thursday evening. They seem very nice. After speaking with her I can say that things are done much differently at the Hospital for Sick Children in Toronto then they are out in Nova Scotia. With the amount of funds and resources that Sick Kid's has you would expect that, and I am very happy to have a center so close by like Sick Kid's. So those of you who donate to the Hospital for Sick Children in Toronto you should be very happy.

I finally booked my exam date. I am writing it a week Monday in the morning. I do not enjoy the stress that comes with writing an exam but I feel very prepared for it, and with more than a week to go and two more mock exams I have at my disposal to prepare with I should do very well. I know that as soon as the first ten minutes pass after starting the actual exam I will be more relaxed. Stay tuned to see how I do. And stay tuned to daily articles again once the exam has been completed.

Parker has recently starting screaming for no apparent reason with that horrible high pitched voice. We are doing everything we can think of to squash this bad habit. He has yet to do it at the hospital while he is around other people so I have not had the deal with the embarrassment of having I shrieking child in public yet. Let's hope that it stops it before we have to deal with it. He was doing it a few weeks ago and then stopped for a while but for some reason has decided to take it up again in the past few days.

Well, my wife is taking a nap so I better try and get the images on the blog before Parker wakes up so I can let her sleep for a while. Enjoy your weekend.

Wednesday, February 14, 2007

Happy Valentine's Day

I told my wife before I sat down today that she should not expect a mushy Valentine's Day article. I told her I would save the lovey, dovey stuff for later.

There are not too many days I actually remember from exactly one year ago, but I do for today's date. On, February 14th, 2006 Parker, my wife and I left the hospital in Scarborough after spending two and a half weeks there trying to figure out what was wrong with Parker. It was one year ago today they told us that he just had a bronchiolitis and that it would eventually clear itself up. Knowing what I do today about blood cells, I would never had let them do that. Having close to no lymphocytes in a CBC is not an everyday occurrence and does not occur just because you have "bronchiolitis". Regardless, we did get to take Parker home that day.

As most of you know, we were only home a few days before we had to call 911 because Parker was choking on his milk. It is kind of hard to feed when you are breathing 80 - 110 times every minute. Take a minute and count how many times you normally breath in a minute. When 911 did arrive I had already cleared Parker's airway but we were told we had to take Parker in the ambulance back to the hospital he was discharged from five days earlier. We were seen fairly quickly and we requested that we be allowed to leave so that we may drive our son to Sick Kid's in Toronto that Sunday (19th of February) evening. The doctor obliged and the story goes on from there.

That is what I remember about this date last year. Does it make me feel sad? No. To be honest, I don't really give it much thought. We are where we are today because of the sequence of events that occurred up until now.

We finally made contact with the other ADA deficient child in Canada. She is only a year old and has been diagnosed about five months ago. As always, I am not going to disclose any more information about this family unless I have their consent. I am hoping to hear from them shortly as I think it is valuable for families who have a child with a disease like this to communicate and share their knowledge, resources and experiences about the disease since there are so few of us.

I do wish everyone a very Happy Valentine's Day. My wife and I will be having a nice dinner together after Parker goes to bed. I think she wants butter chicken but she still has time to change her mind.

Monday, February 12, 2007

One, Two, Three...

Parker's mom is upstairs giving him a bath at the moment. I gave Parker his bath yesterday and taught him how much fun splashing in the tub can be. By the end of his bath Parker and I were completely soaked. He really enjoyed the sound that came from his hands hitting the water. Splash, splash, splash, he went. With each blast came a fountain of water into the air. First hitting Parker, then daddy. I hope he is taking it easy on mommy right now as I am not sure if she is prepared for the onslaught of water that is going to come her way.

I know that I had recently mentioned that Parker did not seem too interested in walking; however, I can see that this accomplishment is only a short time away. Parker stands in the middle of the room without support as he turns his body around quite regularly. When he holds his daddy's hand while standing he has no problem knowing what to do with his feet. My goal for Parker was to have him walking before we leave for Italy, and I am sure he will accomplish that.

I know that many people are wondering when we are leaving for Italy, but we are still waiting for a concrete date. As of the past week and a half we have only known that we should be ready to leave for the end of February. This has really been having its tole on my wife. She has a lot on her mind and really wants to know when we are leaving for Italy. I am much better at handling the stresses of Parker and his disease but my wife finds it very difficult as she is an anxious person to begin with. Dad's and mom's are affected very differently when they go through something like this. I think it has something to do with the having the baby in their tummy for so long.

She has been absolutely amazing with everything that she does around the house and with Parker since he has come home. She pretty much single-handedly is responsible for keeping our home germ free. I have spent quite a bit of time studying for my SCWCD exam that I have not been of much help around the house (except for cooking and playing with Parker). In addition, she has not given me any grief about the time I have spent at the computer and with my nose buried in my notes. She has supported me one hundred percent. For that I am very thankful. So, let's have everyone put a Whoa, mommy! in their comment today. So, everybody...One, Two, Three....Whoa Mommy!

Saturday, February 10, 2007

Just Pictures

I am a little busy with my studying and and we have company coming over for dinner so I thought I would have today's post as a bunch of images. We have quite a few nice images piling up so I thought I would use them today. Enjoy!

Thursday, February 08, 2007

Mr. Independent and the Monkey

I know that I have been neglecting the site the past month, only writing messages every two or three days and I apologise for that. I have been studying quite a bit lately for my SCWCD exam as I want to pass it with a high mark in the next week and a bit. I am currently reviewing and writing mock exams each day and as a result I have been using all of my computer time for that. I promise everyone that once I have this exam done I will once again write everyday.

With each day, we have noticed that it has become harder and harder to keep Parker from knocking the spoon out of our hand as we attempt to feed him. My wife and I recently started to draw straws to see who was the unlucky one that would be taking a shower after feeding Parker. Our son has always been a good eater except when he was ill at the start of all of this. Don't get us wrong, Parker still loves food when you get it into him. He does not make a funny face when you put something in his mouth, he does not spit it back out either. As a result, we have spent the past few days trying to figure out why he has been so difficult when it comes to eating.

My wife placed some Gerber puffs on his tray the other day while she was feeding. He devoured them faster than he normally does. So she placed some more on his tray and this time she brought the spoon to his mouth while he fed himself the Gerber puffs. It then dawned on us. Parker does not want our help. He wants to feed himself. Now, Parker has always had been able to feed himself cookies and small items that we place on his tray but recently he has mastered the skill. He will use the back of his hand to push the item back into his mouth while he picks up something else. If something falls out of his mouth he will catch it with his free hand. Transferring small items from one hand to the other is easy for him. Parker has gotten extremely good using his fingers and hands to feed himself small items. Yesterday, with daddy's help he demolished a jar of green beans. It is much easier to feed Parker while he is preoccupied with feeding himself. I am sure there are at least a few of you who are thinking, why not just put his meal in front of him and let him go at it. What he eats, he eats, what he doesn't, he doesn't. My answer is, I don't think so. We want to make sure Parker has all of the nutrients he needs going into Gene Therapy and my feeding him we can make sure of it. Parker is not very good at using his spoon yet and the last thing we want is to watch Parker make a massive mess and waste his pablum and whatever else he is getting with a spoon that meal. So, little Mr. Independent has arrived and here to stay.

Now, how can anyone be a superhero (Mr. Independent) without a sidekick. Well, that is where the Monkey comes into play. Recently, Parker has decided that after interviewing for superhero sidekicks that he would offer Monkey the job. Many of you may be wondering what a baby superhero sidekick has to be able to do. Well, if you don't mind be dragged everywhere, being whacked or rubbed against the floor, sleeping on the floor in an empty room and having your head gnawed on then I suggest you sign up today at babysuperherosidekicks.com.

Mr. Independent is still not very interested in walking. I have decided that Parker is one of those people that wants to be an expert at something before they move to the step. I know I am Parker's dad and I am a little biased but Parker is extremely good at everything he does. I had read on the Internet the other day that some toddlers take more time to start walking. Ones that have a more relaxed temperament generally are no in any hurry to get through the developmental stages in record pace. They are more interested in mastering each one before moving on to the next. To be honest, that seems like Parker. Parker can stand by himself, he even took a step with me holding him but he is not very interested in walking yet. He even runs when I hold his hands and walk backwards quickly. We know that he can do it. When he does move on to walking I am sure he will be running very quickly afterwards. Monkey better
get ready for some knew responsibilities once Mr. Independent begins to walk. A baby superhero's sidekick job is an forever changing one.

Monday, February 05, 2007

Another family, I think.

I have finished my studying for the day and I do not have to start dinner for another hour and with Nana and Gaga (grand-dad) here I don't have to keep Parker occupied. With that, I have time to write the blog for the day.

I have recently found out about a couple of families going through simllar situations as us on the east coast. I have already spoken with one and am hoping that I get the chance to speak with the other. See, the second one apparently also has an ADA deficient child and is waiting to go to Italy. There may be the possibility that they will be arriving in Milan while we are still there. For that reason, as well as others I would love to speak with this family. I believe that they know of Parker and this website and have been given my email address if they would like to contact us. I hope they do.

Today, I decided to get Parker a treat. My wife's friend has a child who loves watermelon and is just a month older than Parker. When I was at Dominion today to get macaroni (for home made mac and cheese tonight) I saw mini-seedless watermelons. As soon as I saw them, I knew I had to get one for the little guy. I cut it up into a good size piece in hopes that Parker could hold it in two hands and take bites out of it. Apparently, Parker has a new favourite food. Chomp, chomp, chomp, he went. I thought I might be able to snap an image of Parker eating the watermelon but was only able to grab some pictures of the watermelons remains.

Parker has recently decided that he enjoys passing his toys back and forth with daddy. "Give the ball to daddy", I say. Parker looks at me, stretches out his arm with the ball and places it in my hand. "Parker want the ball?", I ask him. As I bring the ball to his hand he takes it from mine and smiles. The game is played for a few rounds and has even been played with his monkey and a face cloth. It is nice to see that Parker can play nice in between his temper tantrums.

I emailed the Italian doctor today in hopes that he could give us some information about lodging and a more concrete date so we may book plane tickets. They are six hours ahead of us and with it being 10pm in Italy now, I cannot see him responding to me today. Maybe tomorrow.

On Saturday, the Peterborough Examiner had another article about Parker on their front page. I know that many of you do not live in Peterborough and do not want to pay five dollars for the article online but it was a nice article. If anyone is interested in reading it and have a method of contacting me via email I will send you a copy to read.

We are still waiting for Parker to stand up and start walking but he is more interested in crawling or using his car to drive around everywhere. I guess he figures what is the point of walking when you are a fast crawler and no one can walk faster than he can drive!

Sunday, February 04, 2007

Pooh and the Tantrum

I guess it is pretty bad when your mom tells you that you better get your butt on the computer to write an article. I have been so busy lately with Parker, and my studying that I have not had time to write. Thank-you to my wife for saving me on Wednesday when she wrote the article.

Where should I begin? Maybe we should start with Parker and his newest past time. The temper tantrum. I thought it was supposed to be the terrible twos not the terrible ones. I don't know what it is but Parker gets so angry when he has to do something when he does not want to . Diaper change, putting on or taking off clothes, eating are just some of the things that Parker yells at us for. DADADADADA he yells as I sit in front of him with his food, then when mommy steps in it is MAMAMAMAMAMA. When I turned my head, not to look at him while he is yelling and crying it gets quiet for a moment. Then he laughs. I remember when I was in grade four and our class read the Judy Blume book, "Tales of a fourth grade nothing". The boy had a little brother called Fudge and I consider renaming Parker to that.

Not to say that Parker is like that all of the time. It is just that when you are used to a quiet, independent little baby who does not mind playing by himself in his playroom you are a little set back when you hear that high pitched scream come out of his mouth. You know the one that that little child does in the mall and you tell your wife or husband that our son will not be like that. "How could that parent let their child scream like that?" It was funny earlier this week when Parker made that scream in his high chair and in complete synchronisation my wife and I stopped what we were doing, turned to Parker and said "No!". He is pretty good at not using that scream during a tantrum and instead just crying and squirming every which way to break free of the shirt that is trying to be placed over his head.

Like I said, when he is not acting out, he is the Parker that we have all known to love. Playing in the main room while listening to Brainy Baby. He regularly takes his puzzle pieces and places them in the correct spot. He uses the front of his walker where he can push buttons, listen to music and take the pieces (ball, star, cube and triangle) and place them in their respective holes. Sometimes, when he gets on his truck he travels around the main floor with great speed. He drives around the pole in the kitchen. Over to the stairs as he contemplates getting off to go upstairs to Winnie. But instead he spins around, back to the kitchen, just to show us that he has mastered the 180 and 360 degree turns. Then he decides that upstairs would be more fun.

Parker drives over to the stairs, carefully places his hands on the first step. Then slowly unstraddles his leg so that he he can use it to push the vehicle away from the him and the stairs. Now, with two feet firmly planted on the floor, Parker can begin the journey up the stairs. First his right knee, then his left, his hand goes to the next step. Now he can stand on that step to do it all again. But this time he decides to throw it into a higher gear so when it is time to place his knee down, he goes right to his foot instead. One step after another, half way up he stops and looks at the landing in front of him. Then he puts his head back down and continues his trek up the stairs. Finally, he reaches the landing. He pops himself up, looks around to make sure his daddy has not fallen too far behind, then he makes the turn to the next set of steps. Only six more steps to go. One, two, three, four, five, six. He does it. He raises his head slightly to make sure he is headed toward the middle room. There he goes, with daddy a few steps behind. Then it hits me. I always forget until I see him race to the middle room. Winnie! I hope that the closet door is closed so that Parker is unable to see him. Carting Parker around for 10 minutes on Winnie the Pooh is much more fun for Parker than daddy. I peak my head into the room. Oh no, my wife left the closet door open. Parker sees the open door as he enters the middle room. I pop up from my knees to a standing position in hopes that I can get to the closet door in time to close it, but my attempt is feeble as I see Parker make the turn into the closet. When I finally get into the room with Parker and Winnie, Parker has his hands securely on the handles and is attempting to climb over Winnie from behind so that he may sit there, ready for his daddy to pull him out of the garage for his daily Winnie the Pooh ride. I figure if he can drive over to the stairs, climb them, crawl over to the closet where Winnie is stored and then get on by himself, he deserves a special ride on Winnie the Pooh.

Parker would like to wish his Nana a very happy birthday once again. Yesterday was Nana's special day and I am sure that we all can probably guess what her birthday wish is this year!