Wednesday, September 26, 2007

Family Picture

Eric brought home this picture today from school. I just love the detail of Jack's wheelchair and equipment. I asked him what the line was running down the front of Jack and he said is was the scar from his spinal fusion surgery. I'm not so sure Mark appreciates the size Eric made him .... seriously, Mark is not that big! Nothing like a kid to give you a reality check.

(click on the picture if you want to see it close-up)

I had to take a picture of Mark this week for a school project for Eric. Mark rarely allows me to take his picture --- but, since I have one, here is a picture of the DAD:

Eric funny:
When most kids have to go to the bathroom, they tell you "I have to go to the bathroom". Not Eric, he tells me "My kidneys are telling my bladder it has to go to the bathroom". The kid makes me laugh!

Sunday, September 23, 2007

Fun with Family

My sister Maureen was in town this last week and everyone was over tonight. It's always fun for the cousins to get together. Jack really enjoys the chaos, especially when they use his TV to play the Wii. Sharing some pics:

The kids stealing some time on my computer!

The cousins hanging out in Jack's room playing the Wii

Jack with his beautiful cousins Bridget and Shannon


It's finally cool enough in the evenings to take Jack out for a walk around the neighborhood. This picture was taken just as the sun was going down. Taking my own advice (thanks for the reminder Evy) ... Jack and I stopped to enjoy the moment.

Have a fantastic week my friends.

Friday, September 21, 2007

A Good Week



This week I got the call to schedule Jack's eye-gaze, aug com evaluation. It will be done at the speech and hearing department at Arizona State University. The woman who is doing the eval came highly recommended by Jack's neurologist. I'm excited and nervous at the same time. I don't want to get my hopes up too high, but it sure would be nice if we could discover a way for Jack to communicate. The eval is scheduled for October 4th. I'll let you know how it goes.


Those of you who enjoy my Eric stories, here is another one for you. I got a bill from the school cafeteria this week for charges made on Eric's lunch account. Problem is, Eric doesn't have a lunch account - I make lunch for him to take everyday. So tell me, how is it that a kindergartner is allowed to put charges on an account I never set up or authorized! The little stinker just decided he wanted a school lunch, so he got in line and ordered it. I called the school and told them Eric's charging privileges have been cut off! I'm going to have to restrict Eric's access to the computer for fear he might discover Internet shopping.

Being the independent kid that he is, when we walk to school in the morning, Eric insists that we split up. He goes one way around the school and I go the other -- we meet up where his class lines up. None of my other kids would have left my side at this age. I'm not quite ready to let him walk to school by himself yet - I get nervous having him out of my sight the short time that he is. Here are a few pictures:

The starting point

The split -- he goes one way around, I go the other

Coming around the corner

Successfully reaching his destination


Last week was homecoming at the girls' high school. Some more pictures:

Mary before the game

Mary and her friends ready for the homecoming dance

That's the update from here. Jack is doing well and since he pretty much sets the tone for how the rest of us are doing .... life is good right now. Have a great weekend and remember to ENJOY THE MOMENT!

Tuesday, September 18, 2007

Happy Tuesday

Jack saw his neurologist yesterday for his every three months botox injections to his salivary glands. Contrary to what you hear about botox injections -- they are painful and it is so difficult for me to watch Jack cry (and he really cries). His neurologist feels bad and said that he doesn't like to make Jack cry -- and I made him feel even better when I told him that he is the only doctor Jack sees who makes him cry! The last two series of injections haven't been too successful in stopping the flow of saliva, so if this series doesn't help, we will take the next step and have one of his salivary glands radiated. We've already met with a radiation oncologist to discuss this. Jack's lower salivary glands were ligated a couple years ago, so his upper ones are the only ones producing saliva. If we knock out one of them, hopefully .... we can halt the saliva production enough to stop the aspirating and drooling. It's really difficult for me to take Jack out in public when I spend 99% of the time wiping the drool. I just hate it. Yes, it is a cosmetic concern more than anything else, but it's a social issue as well. We can't eliminate saliva production completely because a dry mouth would seriously damage Jack's (beautiful) teeth. Finding the right balance is the challenge.

We've also noticed lately that Jack will momentarily space out and look up. There is nothing consistent about it and it doesn't happen often or last long. However, Jack's OT mentioned it to me the other day, so apparently it is happening often enough for him and Jack's speech therapist to notice. I asked Jack's St. Louis neurologist about it and she said that "brief seizures are well described in children with congenital muscular dystrophy". She recommends an EEG if the episodes happen frequently. I mentioned this to Jack's neurologist yesterday and he agreed that we could get an EEG if the episodes (I can't force myself to say the "S" word) become a regular event. As of right now, I prefer the ostrich - head in the sand approach.
Denial is a wonderful place to live .... on occasion.

A cool front is moving through sunny Arizona -- our temps are below 100 -- Yippee! Hey folks, under 100 is Fall for us. Hope you all have a wonderful week and remember . . . smile and the world smiles with you.

Thursday, September 13, 2007

A whole lot of nothing going on

This week was a quiet and uneventful week. On Monday, Jack saw his pediatrician for a "well" check. I knew it had been awhile since we saw the pediatrician, but according to their records - we haven't been in since January of 2006. Remarkable! Fortunately, Jack's pediatrician is very accommodating and doesn't make me bring Jack in for every little thing. His only suggestion was that I get Jack an appointment with a dietitian to make sure his nutrition is adequate. We haven't increased Jack's volume of Pediasure in years (and I mean years), but he is obviously growing - and healthy --so, it's a safe bet that his nutrition is fine. Nevertheless, I'll see about making an appointment with a dietitian ... eventually .... some day ... maybe.

Eric has had a perfect last week and a half at school. Wouldn't you know after we meet with his teacher, he decides to "conform". I think -- as many of you noted -- he (and the rest of the class) just needed time to settle in. Listening to what his teacher has to deal with on a daily basis, the woman has my admiration. I can't imagine spending my days trying to corral, entertain and educate twenty 5 year olds! I'm optimistic that we will survive Kindergarten. At this point in time, we are keeping things the status quo as far as placement ... after all, it's only Kindergarten.

I recently finished reading a book a friend sent to me – “Man’s Search for Meaning” by Viktor E. Frankl. The book was first published in 1959, so it's not new -- just new to me. The book is an account of Viktor Frankl's life in Nazi death camps and his lessons for spiritual survival. I admit that I don't really like to hear that my personal happiness (or contentment) is completely and solely my choice, notwithstanding all the difficulties life has thrown my way. It's much easier to believe you are a victim of circumstance and it's not your fault that you are miserable. However, it is Frankl’s belief that while we cannot avoid suffering, we can choose how to cope with it, find meaning in it, and move forward. Given the horrific circumstances Frankl endured, he certainly has credibility and his lessons for spiritual survival are compelling and inspiring. There are many good passages in the book that are worth remembering and sharing:

• Life is not primarily a quest for pleasure, or a quest for power, but a quest for meaning.

• Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you feel and do about what happens to you.

• As each situation in life represents a challenge to man and presents a problem for him to solve, the question of the meaning of life may actually be reversed. Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked. In a word, each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.

• It is characteristic of the American culture that, again and again, one is commanded to “be happy”. But happiness cannot be pursued; it must ensue. One must have a reason to “be happy”. Once the reason is found, however, one becomes happy automatically. A human being is not one in pursuit of happiness but rather in search of a reason to be happy through actualizing the potential meaning inherent and dormant in a given situation.

• Man is ultimately self-determining. What he becomes – within the limits of endowment and environment – he has made out of himself. In the concentration camps, for example, we watched and witnessed some of our comrades behave like swine while others behaved like saints. Man has both potentialities within himself; which one is actualized depends on decisions, not on conditions.

• He who has a Why to live for can bear almost any How.


My Mom update:

My mom is doing well all things considered. She completed radiation over two weeks ago and has been off chemo for as long. They are giving her a break from the chemo for a month and then standard protocol is one week of chemo, three weeks off. She will have a repeat MRI in a month. Until then, it's any one's guess as to whether the tumor has grown back (which is what this tumor does). My mom is apparently very unsteady on her feet, which could be indicative that the tumor has returned. Fact is, the type of brain tumor my mom has is incurable. There is nothing that can be done to eliminate it completely and little that can be done to slow its return. Based on what I've read, even if we were to travel to a top-notch medical facility and aggressively treat the tumor -- at best, we'd only be buying a few more months of life and then you have to consider the quality of those extra months of life. Bottom line, the next six to nine months are not going to be particularly enjoyable, rather, they are going to be particularly tough, especially for my dad.


On that happy note .......... have a safe and wonderful weekend. Fall is in the air (unless you live in Arizona!)

Sunday, September 09, 2007

A Bunch of Pictures

I got a new camera and have been playing around with the color accent feature. Here are some pictures I took today.

life sustaining tubes

morning routine - the "Vest" and breathing treatment

starting the day off happy

the hand (contracture)

the brace

knee brace

still a happy kid

Miss Mary

my little entomologist

always a happy kid

best friends

and one more from dinner tonight ............

Thursday, September 06, 2007

Happy Birthday

To my sister Maureen. Just for laughs, here is a picture of me and Maureen taken, oh .... just a few years ago. (I am the older one, in case you couldn't tell.)

Saturday, September 01, 2007

Odds and Ends



Last Monday after soccer practice Eric was handed a bag that contained two T-shirts (a white one and a navy one), a pair of black shorts and green socks. No instructions, just a bag with his soccer uniform. So, for Wednesday's practice, I had Mark dress Eric in his navy shirt because it has a cool logo and I just liked it better than the white one. Mark arrived at the soccer field and Eric is the only kid in his navy shirt -- all the other kids are in their white shirts. I asked my sister about it because her boys have been playing in the same soccer club for years and she said that the white shirt is the practice shirt and the navy shirt is the game shirt. As far as I know, they aren't playing any games at Eric's level, every practice is just that -- a practice. Thus today --Saturday -- I put Eric in his white shirt because, as far as I know, it's just another practice day. Yep, you guessed it . . . every kid had his navy shirt on and that would be MY kid, the ONLY kid in the WHITE shirt in the above picture. Apparently, I DIDN'T GET THE MEMO! I have no doubt that Eric's coaches think his parents are absolute idiots. Well, this bright light has now figured out that it's white on Monday and Wednesday and navy on Saturday. And, no ... they didn't play a game today, it was only practice!

Mary is in San Diego participating in an Irish dance competition (called a feis and pronounced "fesh"). I really wanted to go, but without any nursing on the weekend, I didn't feel like I could leave Mark alone with Jack the entire weekend. Mary placed third in one of her dances, which is great given the significant number of dancers in her age group and level. She will be hanging out at the beach tomorrow with her cousin Shannon and their friends from dance (and their parents). Sure wish I was there . . .

Mary sent me this picture via her cell phone. It's not great, but you can see Mary in a "solo" dress. After dancers reach a certain level in their competition, they are able to wear a solo dress, as opposed to the class dress they typically wear. Each school of Irish dance has a custom designed class dress, while a solo dress is individualized for each dancer. The solo dresses are quite expensive and Mary is now at the level where she (thinks she) needs one. Thankfully, she was able to borrow one of Shannon's this time around.

(Mary is in blue; Shannon in pink)

Irish Dancers
(pic added Monday 9/3)

After all the negative feedback we've received regarding Eric's performance at school, it was a true pleasure to receive a postcard in the mail today from one of Mary's teacher, upon which he wrote:

"I want to let you know what a pleasure it is having Mary in my honors world history class. Her positive attitude and strong work ethic will take her far. Thank you for your support."

It's the little things like that, that make this parenting thing all worth it! Thank you Mary.

On the Eric front, Mark and I are meeting with his teacher on Thursday. If things don't turn around soon, we are going to put him in the gifted class - which only complicates our life because the program is at a different school, not close to our house. However, we will find a way to make it work if need be.

Just some pics:

Jack enjoying time on the couch and a change
of scenery from his bedroom

"Wild Man" and his new Crocs

I also want to once again thank all of you who check in on us and thank you for all your comments. I cherish every one. Enjoy the rest of your three day weekend.