Wednesday, October 31, 2007

Better Late Than Never!

It has now been almost three weeks since I last wrote and I know that there are probably a few people who are not too happy about that. I have found it very difficult to write lately. I can make excuses I guess but to be honest the main reason I have not been writing is that I am trying to do whatever I can to act as if we have already won the battle against ADA deficiency. The battle is far from over and even further from being won but I try to do whatever I can to be as normal as any other family.

I have been off from work for over a year now and with everything we have gone through I want normality. I have not written my exam yet but am scheduling it for either this Friday or Monday. Once that is done, I hope to find a position shortly after. It will be nice to actually have an income once again. As you can imagine, the financial stresses that come with this disease have been overwhelming at times. That said, we are extremely appreciative of everything that people have done for us to ease that burden. We have had a couple of people who have offered to do a fundraiser for us and we really appreciate this. It will definitely be much easier for us if we can somehow try to eliminate some of the financial stress when there are so many other stressful things to deal with as well. Although I am planning to go back to work soon, a return date for my wife remains unknown until we see Parker's numbers reaching a stable level. I know how much my wife would love to return to her teaching job, but it is a difficult profession for someone who has a son who is severely immune compromised.

Now, that I have gotten all of my whining out of the way I shall update everyone on how things have been for us the past three weeks. I shall do it in the fashion that many of you have become accustomed to lately and break the article down into subheadings.

Parker's Neutrophils and Lymphocytes
I figured that I should begin with the most important. I had mentioned that Parker's neutrophils had dropped the last time I wrote to under 1000. We had hoped that when we made our next visit to Sick Kid's we would see a correction and Parker's neutrophils would have increased to over 1000 again. Unfortunately, that was not the case. We shocked when Parker's blood came back just over a week ago and his neutrophil count was 640. Shocked enough that we actually went to speak with Parker's immunologist at Sick Kids.

No one really knows why Parker's neutrophils dropped. I am confident that it does not have to do with his metabolites or his engraftment but that does not mean that the doctors do. I had emailed the doctor in Italy and he agreed that he was not worried but did want Parker's blood tested again this past Friday. Parker's neutrophils had increased slightly to 750. Now, this was not exactly the increase we were hoping but at least they had not dropped for a fourth consecutive time. We are not scheduled for another test until a week yesterday so we just sit back and pray that his numbers increase again.

The good thing is that Parker's lymphocytes increased. The last two test had them at around 400. This is very encouraging and much higher than we had anticipated at this time. The lymphocyte count can fluctuate quite abit so we may see them drop again on Monday.

Our Attempt at the Toronto Zoo
We decided to get a pass to the zoo so that we could do something with Parker that we thought we all could enjoy. On Sunday, we made our first attempt at going to see the animals but after about 15 minutes it started to rain and we figured we should call it quits and come home.

Then, on Monday, we figured it was a nice day and we should once again try and go to the zoo. First, we had to make a trip to my parents to pick up some clamps so we could repair a door that Parker had broken. Just prior to pulling out of my Parent's driveway I noticed that one of my tires had gone flat. So, after replacing the tire with the donut I had in the trunk we spent the rest of the morning getting the tire repaired instead of going to the zoo.

Yesterday, as we pulled into the zoo parking lot we realised that we had not brought Parker's stroller and that without it it would be a very difficult morning at the zoo. That said, we were determined to go to the zoo, so we just went home to get his stroller.

I would like to say that Parker was amazed at the animals, but he was not. For almost two hours we pushed him around the zoo showing him the elephants, tigers and giraffes. But all that Parker was interested in was looking at the leaves we rolled over while pushing him in the stroller.

Close to the time that we left, we decided we should let him walk around for a bit. Parker loved it. Leaf after leaf he picked up and through into the wind. Unfortunately for him, we had to pick him up so he could go home for his nap. The little monkey cried and cried as I carried him under my arm to the car. Every once in a while, as we passed a leaf I would stop and lower him so he could pick it up. By the time we got to the parking lot the leaves were gone and we faced the task of trying to get our upset son into his car seat. Everyone who saw him must have thought he really loved the zoo.

Coffee Time!
This morning Parker decided that he would also like to have some coffee with daddy. As I mentioned several times, Parker is one quick little monkey. This morning I had turned around for one second only to see Parker grab my coffee mug and dump it all over our cashmere coloured carpet in our bedroom. I quickly called Tracy and told her that she needed to grab the little guy so that I could begin cleaning up the mess he had created. I have now tried a couple of times to scrub the area clean, but there is still a definite finishing touch to our carpet now!

We would like to wish everyone a very safe and happy halloween. We are planning to take Parker to a few houses so that some of our family and friends may see the little guy in his extremely cute costume. Parker's costume is very fitting for what we always refer to him as- our little monkey!

Happy Halloween Everyone!

Thursday, October 11, 2007

I Know, I know.

Yes, I know. I have not written an article in a long time. My only excuse is that I am trying to get as much studying done as I can so I can start working again as soon as possible. When I am not studying I am chasing Parker around the house. That said, here I am. Sitting down at the computer in blogger, ready to write my next post. As many of you have been come accustomed to I will use the subheading format that makes things much easier for you to read.

First Trip Back to Sick Kids
This past Tuesday marked our first trip back to Sick Kids hospital in Toronto. We will be making trips every two weeks so that Parker can get his IgG, Pentamadine in addition to getting his blood tested. On Tuesday, Parker had an infusion of Pentamadine through the line inserted under his skin on the right side of his chest. It went extremely smoothly and only took one hour to complete. In Italy, Parker received Pentamadine through a ventalator but we always found it difficult to administer since he fought the mask for the whole 10 minutes. We always felt that we were getting more of the medication than he was. For that reason, our immunologist at Sick Kids decided that administering the medication through an IV was the best solution and the norm for them with children under the age of five.

Parker also got to use the big boy scale for the first time. You know, the one you step on. When they wheeled it in, Parker was very happy. He walked right up to it, stepped on it all by himself and waited for the display to yield a reading. How much did Parker weigh? 13.7 kg. In pounds, that is 30 lbs 2.2 oz. What a big boy or little monkey has become.

Prior to starting the Pentamadine (precautionary medication for PCP pneumonia), they took a vile of blood so that they could complete a CBC (white blood differential among other things). We of course were anxious to get the results of Parker's blood test in hopes that he would have higher number from when he left Italy. Unfortunately, he did not. Parker's neutrophils had dropped to 1000 and his lymphocytes are currently 180 cells/unit of blood. We are used to his neutrophils fluctuating over the past couple of months but were hoping that they would increase to close to 2000, a number that he had almost reached a week before leaving Italy. As for the lymphocytes, we know they take some time to increase so having 180 lymphocytes is not surprising and is similar to what we experienced from Parker's blood results in Italy.

What does this mean? It mean that Parker will continue to be protected in such a way that we can ensure that he will not get sick but will be able develop in such a way that he will be ready to enjoy Kindergarten like any other four year when the time comes. Who does he see? He sees his grandparents, as long as they are not sick. He sees his aunts, uncles and our friends, as long as they are not sick or have a child that is sick. He can play with one child at a time as long as they are not sick, have recently been sick and are not attending school or have siblings that are going to school. And even then, this is done in an extremely controlled environment. Which really limits the number of children he can be with. Lastly, he does not get to be around large groups of people without being covered by his shield.

To be honest, we have gotten used to the fact that we are very limited in what we can and cannot do with Parker but that said we are very knowledgeable about how germs are transfer ed which allows us to do more now than we did prior to the gene therapy. That said, we wish we did not have to live this way.

Last weekend was Thanksgiving here in Canada and we spent Sunday afternoon at my parents as Nana and Gaga watched Parker at our home. As I had mentioned above we were unable to bring Parker because of the number of children attending. That said, it was extremely nice being able to spend Thanksgiving with family this year since last year we spent it at home alone.

It was the first time that I had had Deep Fried Turkey but I have to say that my mother and father did a great job. It was definitely the best tasting turkey I had ever had. Crispy skin, juicy white and dark meat, and cooked in only one hour. Now, I am not saying that everyone should go out and buy a turkey fryer but if you think you can handle using one without burning down your house you may want to give it a try next year.

For us, Thanksgiving will be encapsulating two weekends. Tomorrow, my wife and I will be going to Uncle Michael and Auntie Kate's to celebrate with their family. This was a little unplanned but my sister-in-law was very kind to move the celebration to this weekend so that we could attend. Why? Not because my parents were having Thanksgiving last weekend but because people were sick and my wife and I will not be around people who are actively sick in a closed environment. So, again we affected by having a child with a disease that leaves him without an immune system. Regardless, we are extremely happy that we have been able to attend both celebrations and Parker has been able to spend time with his grandparents at home while we do so.

Home Life
Now, I had mentioned that I have spent quite abit of time in my office working leaving most of the morning to my wife so that she can watch Parker and still make sure the house is extremely clean. That said, I do spend the rest of my time with Parker watching him grow and develop.

I have to say that in the two weeks that we have been home I have seen big changes in my son. I had mentioned earlier that we do spend most of our time with Parker upstairs. Parker has a couple of rooms where his toys are located in addition to the loft outside these rooms and of course the doors to our bedroom are also usually left open. So, Parker normally runs around from room to room finding toys that are just small enough to fit into mommy and daddy's VCR. Now, I know like most people we don't really use a VCR any more but that last thing I want is to go and use it that one time and find out that I cannot fit a tape in it because he shoved a toy car, a DVD case and one of Mr. Potatohead's ears in it. And yes, we have learned that saying no really has no effect. Well, I would not say it has not effect. It does give us time to run over to him as he sits there on his knees in front of the VCR smiling at us as he puts the toy in the slot.

Soccer. Yes, after spending seven months in Italy the only "real" sport that my son has become accustomed to playing is soccer. The upstairs is large enough to play monkey in the middle with Parker as my wife and I kick the miniature soccer ball to each other. Okay, we are not that mean. We pass it to Parker so he can kick it to. I would say he kicks it 30% of the time, picks it up and whips it with two hands 60% of the time and then for the remaining 10% he runs up to it, steps on the ball and falls flat on his backside. Oh well, Parker does not care. Actually he usually sits there for a second and then picks up the ball and throws it at one of us. I guess that means he throws the ball 70% of the time, doesn't it?

His blocks. In Italy he loved his blocks. By the time he left he was building some nice towers out of them. Those were the days. What does Parker do now? He goes over to his large plastic wagon full of blocks, crouches over them, and then first with his left hand he grabs a block and flings it behind him, then the right hand, and back to the left hand again. He were amused the first time we saw him do this but then when we saw him sitting on a large pile of his books flipping through the pages of most likely the only book that he had not done the same thing to as his blocks we realised it was time to nip this habit in the butt. My son has a disease that I would not wish upon anyone but that does not mean he gets to be a brat. The next time I saw him throwing his blocks I walked him around the room and made him pick up each and every block. Now, although we still catch him doing his with his blocks once in a while, he now is in charge of going around the room and picking up every block he through and putting them back into the wagon.

Things with wheels. You know, Parker was not that interested in his toy cars and trucks in Italy. That said, since coming home his favourite toys have wheels on them. He loves his dump truck that he pushes around on the hardwood downstairs. He fills it up with everything he possible can. He loves racing his cars down the ramp of his Disney Cars toy. And recently, he started pulling his wagon of blocks out of his room and out to the loft so he can test for the acceleration of gravity by tossing the blocks one by one down the stairs. Well, he did it only once, and only one block. Of course, it does not stop him from bringing his wagon of blocks out to the loft whenever he can.

Peg Perego
Now, I have always said that my wife and I love Parker's stroller from Peg Perego. That said, it took quite a beating in Italy and as a result it had to go for repairs during the month of July while in Italy. Peg Perego is from Italy so with the stroller still under warranty we had no problem getting fixed except the person I spoke with did not speak English.

Unfortunately, when we were leaving for the airport in Milan, the same problem that we had repaired in Italy reoccur ed. So, our wonderful stroller was causing us major problems. So, when we returned to Canada my wife called the Canadian office for Peg Perego located in Pickering and explained the importance of Parker's stroller to us. Without it, hospital visits are impossible since Parker will not wear a mask.

The woman at Peg Perego was absolutely amazing. She had someone pick up the stroller from our home so that she could look at it. It was decided that the best solution would be to replace the stroller instead of trying to fix it again since it still remained under warranty. So, now, Parker sports a a cool new funky green Peg Perego Uno stroller. He loves it.

Parker and Jett
Just over a week ago, Uncle Michael and Auntie Kate came over with their son Jett. He is much younger than Parker but definitely old enough that the two cold interact with each other. I have to say that Parker and his cousin had the greatest time together. Now, I cannot speak for either of them although I don't think they have the words to complain but they looked like best buddies.

Yes, they did touch but Parker's friend made sure to stay squeaky clean during his visit which made it very easy for us to ensure that Parker would be safe.