Tuesday, September 26, 2006

A Little Less Anxious

It seems like quite a while since I wrote even though I posted a message yesterday morning. I guess a lot has happened in the past thirty-six hours when I last sat down to write an article. Today being Tuesday, it meant two things for Parker. First, he had to take his Septra this morning. To be honest, in the past this has generally been one of the harder things to do. Parker does not like getting his Septra and up to just recently it had to be given quite slowly so he did not gag on the pink gooey liquid. Parker usually dodges the syringe as he uses his arms to swat it away, or even worse, try and grab it from me. Last week I started to notice that Parker was fighting his medication less making it easier for me to give to him. Today, he pretty much let me do it without putting up much of a fight at all. Let's hope that tomorrow brings the same.

Secondly, Parker also had his trip to Sick Kid's to get his ADAGEN injection. On Tuesdays, Parker used to give blood so that we could check his numbers by doing a CBC (Complete Blood Count). Since Parker has been doing so well, they decided that blood only needed to be done once a month. Unfortunately for Parker, today was that day. Parker gave blood for his CBC as well as enough blood to do another marker test using flow cytometry. The last time he had the marker test done it showed that he was producing the cells that he was unable to since being born. Repeating the test a month later should yield results that are similar to the last test.

In addition to giving blood and receiving his ADAGEN injection, we were pleasantly surprised to get a visit from our staff immunologist. We have been very anxious about when we would be going to Italy as we want it to be sooner rather than later because Parker has been extremely healthy. In addition, we do not want Parker to remember too much about the procedure. Although, we were not given any dates, we were happy to hear that everyone is extremely pleased at how well Parker is doing and that it is still everyone's intention that Parker participate in the study in Italy. To be honest, that small conversation that we had today removed a lot of anxiety from both my wife and I. We can now just continue to focus on Parker getting strong and developing normally.

Parker sees his occupational therapist on Friday during clinic and we are excited to show her how much Parker is capable of doing. I still remember when she came to visit Parker for the first time back when he was in isolation. My wife told me that when she first came to the anteroom she had mentioned to her that she would come in to assess Parker and let us know what we can do to help him. She had expected our son to be a little behind developmentally after spending most of his life sick and in the hospital. As most of you know, I have worked with Parker right from the beginning, even when he was sick so that he would be a strong little boy. My son was doing 'tummy time' with an IV in his foot at five weeks of age. That said, she was very surprised that he was developing normally. We look forward to seeing Parker's therapist on Friday to show her how well Parker has continued to develop since coming home.

Since coming home we have continued to work with Parker to ensure that he is developing at least at what is expected to be normal for his age. When we found out that Parker had an ADA deficiency and that one of the side-effects was some possible neurological problems it made us want to work even harder with him. What do we do? Well, we read to him, we interact with him, we talk to him, he gets quite a bit of time playing on his mat with his toys, and he gets time to move around his room a couple hours each day as well.

I know that many parents are completely against their infants watching television. However, to be honest, watching educational television is an integral part in Parker's development. Recently, we discovered a set of DVDs by a company in the United States called Brainy Baby. They are similar to Baby Einstein but to be honest, I like them much better. Parker watches the same DVD each day as he sits on his mat in front of the television with either myself or my wife nearby. The current DVD is supposed to promote logical thinking as it shows little children interacting with toys similar to what Parker has in his room. Parker is unable to interact with other children. He does not get to see them playing with toys so being able to see it on television is extremely educational for him. As Parker watches the show, we reiterate to him what is going on by counting with the show, or restating what each object is. Of course, Parker cannot count, he does not know the alphabet, nor can he tell me what a balloon or dog is but I find it hard to believe that he is not benefiting by seeing or hearing the words while he watches the objects on the screen. If you are interested in an excellent alternative to Baby Einstein check out Brainy Baby.

My wife and I recently found out about a fundraising event that is occurring at one of my wife's friend's school in which she teaches. Summit Heights is doing a "Pennies for Parker" fundraiser throughout the month of October. Each Friday people place pennies into a jar for our little guy. We are very thankful of Summit Heights for doing this.

My wife and I are extremely amazed at how so many people have come together to make it easier for us to help in our battle against Parker's disease. If you are doing an event and would like me to write about it in Parker's blog, please let us know about it. We are so appreciative of everyone and we want Parker to know one day how many people were supporting him.

CityTV called me today and they are planning on doing a story on Parker in the upcoming week which will focus on Parker, his disease and the pub night that is being put on by Pope John Paul II alumni. As soon as I know when the spot is going to air I promise to let everyone know.

1 comment:

Natalie said...

Hi There Parker!

It is good to see you in your sweet little outfit! You are such a cutie!

I hope that you are enjoying your new DVD shows! How exciting! I cannot wait to watch them with you!

Have a great night Parker Pants!

Love,
Auntie Natalie xoxox