A change in plans ...

We were supposed to be heading to Rochester for Michael's MRI tomorrow but we had to reschedule. Michael has been fighting a high fever and a cough for the last 2 days so he can't have anesthesia. We have rescheduled for 2 weeks from now. But, the good news is Michael seems to be on the mend.

Michael had a great time playing soccer this fall.

His favorite position was definitely goalie.

Now it is on to basketball.


Michael had a great Halloween. He dressed up as Bumblebee (a Transformer - go figure) and actually got a lot of use out of his costume. First there was a church school party, then a Boy Scout party to which we took ...

... Monster Mouths (apples, peanut butter and candy corn) and ...

... and Freaky Fingers (cheese sticks and almond slices) to share.

And to wrap up the holiday ...

... a parade and party at school.

Then on Saturday, Jenny and Ralph made it home. Before heading out to Trick or Treat, Michael and his big sister crafted this masterpiece ...




On a side note - Michael received his beads from Beads of Courage today. If you haven't checked out their website, click on the link in my sidebar and check them out - it is an incredible program. Michael and I will be stringing his beads to represent the time line of events he has gone through for the last 2 years. I will post a picture when we are done.

We have our appointment with Michael's neurologist next week, I will let you know how we make out. Please keep Michael in your thoughts and prayers, JoAnne.

I have been remiss in posting medical updates ...

I noticed I haven't posted any medical "news" in awhile and thought I should catch up.

A couple of weeks ago, Michael went to see his pediatrician, Dr. Swan, for his annual checkup. She thinks he is doing great and it was great to see her (she is still my hero). It was also time for Michael to get a couple of vaccinations.

Unfortunately, when the nurse came into the room with the needles, Michael had a complete panic attack! For a little boy who has had in the neighborhood of 75 needle "pokes" over the last 2 years with nary a complaint, his response was very unexpected and totally heartbreaking. Once they were done though, Michael calmed right down and admitted that it wasn't as bad as he thought it was going to be.

Then, last Thursday, the 8th, Jeff and Michael made the trip to Syracuse for Michael's last antibiotic infusion. That means Michael has been off chemo for 6 months and all of the chemo drugs should be out of his system. We are going to Rochester the first week in November for Michael's next MRI and if everything is stable, his port can come out anytime after that. And since I am in a constant state of worry about his port, I will be thrilled.

For instance, Michael loves playing soccer and his favorite position to play is goalie. Two Saturday's ago, Michael stopped the other team from scoring by taking a soccer ball to the face. The poor thing dropped like a stone and the coach thought he was out cold. But, he got right up and finished playing the game. Of course like all parents, my heart stopped and I was holding my breath until I was sure he was okay. Unlike most parents (who would have been upset that their child took such a hit to the face), all I could think was "Thank God it didn't hit his port."

Shortly after school started, we received a letter from the school's occupational therapist. She said she noticed some deficits in Michael's fine motor skills and recommended she work with him to see if we could refine those skills. She doesn't think it is serious and isn't even recommending we do any special testing at this point. But she is aware of Michael's medical history and thinks we should be proactive as opposed to reactive.

After I calmed down and started breathing normally again (okay - I admit I overreacted but after all this is something neurological we are talking about), we agreed to let him go to the special classes. He actually loves it! They do crafts and play games and after each class he looks forward to the next time.

But in light of this development, I have made an appointment to see his neurologist when we head to Rochester next month. And while we are there, I intend to restate my arguments on why we should try taking Michael off Tegretol.

I talked to Dr. Swan about it, and she agrees with me that trying to wean him from the medicine with the understanding that we would put him back on it at the first signs of seizures is a good idea. She also pointed out that Jeff and I are the parents and the decision is ultimately ours and not the doctor's. "Yes" I told her but doctors have a way (intentional or not) of making you feel like a rotten parent if you go against their advice. (Remember the surgeon that implanted Michael's port?) Keep your fingers crossed that I can be persuasive this time.

I guess that is all the news for now. Until next time, please keep Michael in your thoughts and prayers, JoAnne.

Did you hear ...

... about the six year old boy that was suspended for taking a knife-fork-spoon utensil to school? Well, last weekend Michael found a swiss army knife that belongs to Jeff and was fascinated with it. So, I thought it would be a good idea if we have a discussion on how taking something like that to school would be a big no-no. It went something like this:

Me: "Hey Buddy, you know that knife of Daddy's you were carrying around last weekend?"

Michael: "Yes."

Me: "You know not to take anything like that to school, right?"

Michael: "Yes Mama. Why?"

Me: "Well there is a little boy the same age as you who took a camping utensil to school and he got in big trouble because it was against the rules. And now he can't go to school for a while"

Michael: "Oh." (He thinks for a minute.) "Why can't he go to school?"

Me: "Because the rule says that if you bring something to school that could be considered a weapon, you get suspended. Do you know what suspended means?"

Michael: "Yes. Dad told me."

Me: "Good. We don't want that to happen to you."

Michael: "Don't worry, Mama. I got in trouble in Kindergarten for taking a screwdriver to school and I won't do that again."

Me: "Ouch." (That is from the pain in my neck from whipping my head around so fast to look at Michael.) "You took a real screwdriver to school? When?"

Michael: "Last year and the teacher told me not to do it again, so I won't."

Me: "Well, good. I am glad we had this talk."

And, since Michael has carried tools around since he first learned how to walk (although they are usually toy ones), I am extremely grateful that Michael's school apparently has a lot more common sense than that of the little boy in the news.

Please keep Michael in your thoughts and prayers, JoAnne.

Conversations with Michael...

This week Michael and I had some pretty interesting conversations that I would like to share with you.

The first was Wednesday night on the way to Open House at school (which went well). We were talking about his new friends that I might get to meet and he said "By the way, I have a new girlfriend."

"Oh really" I responded.

"Yes" he said "and you're not going to like this."

"What is that?"

"She hugged me."

I hid my smile and asked, "Does that mean she thinks you're her boyfriend?"

And his reply was - "No but I told her, 'you don't know it yet but you love me'." No self esteem problems in this kid!

The second conversation was after I picked him up from his first week of church school yesterday. He asked "Mom did God make Transformers?"

I said, "I guess indirectly since he made the people that invented Transformers and all of the materials that go into them. Why?"

He said, "Well, my teacher wanted us to write down our favorite thing that God has made and I wrote 'Transformers'. Is that okay?"

"I am sure it is just fine."

The third conversation was on the way home from the store last night. He asked "Where do puppies come from?"

"From the Mommy dog's belly" I answered nervously.

"I know that," he said. "How do they get out of her belly?"

My mind worked frantically and I came up with "well, when the puppies are ready to be born, the muscles in the Mommy's belly pushes them out into the world." And then I held my breath, waiting for the next question from that subject that every parent dreads.

But, "Oh" was all he said. I think I bought myself some time but I better get my story straight for next time.

And the last conversation was tonight while we were waiting for a movie to start. He said "My church school teacher asked us all to say what is special about us. And, I said "I have a port in my chest'."

According to Michael she said that he was very special because of that and that she knows this because her daughter used to have a port just like Michael's. And, if you could have seen the look in Michael's eyes, you would know how much that meant to him.

Until next time, please keep Michael in your thoughts and prayers, JoAnne.

In case you were wondering ...

... why we signed Buster up for dog training classes, it's because of incidents like this -

Yesterday, he ripped thecushion on the loveseat on the deck and hid his bone in the stuffing. I sure am glad I didn't get around to sewing those new cushions I was planning this summer.

I also forgot to tell you about the week that Michael received his first allowance - Jeff put $2 on the kitchen counter for Michael and Buster thought it would make a tasty snack. And, there isn't a pillow in our home that is safe and the casualties from our shoe closet are too upsetting to speak about. He's just lucky that we love him so much.

Anyway, our first class went well. Our instructor showed us some indestructible toys which we bought that seem to be satisfying Buster's need to chew. She also told us we should take Buster on a long walk each evening to use up some of his puppy energy. Apparently Buster wasn't listening to the instructor very closely because he missed the part where walking was supposed to tire him out! It actually seems to give him a burst of energy and when we get home he bounces off the walls for the next hour.

Tuesday night was Michael's first soccer practice and his first game is this Saturday morning. I was quite impressed with Michael's effort at practice. He listened attentively to his coach and was quite aggressive in going after the ball. I'm anxious to see how he does at his first game (I promise to share pictures).

School is going well. Michael brought home some work that actually made me cry -

(I know it is hard to read.) They were practicing writing their vocabulary words and at the bottom he was to write a complete sentence using at least one of the words. And, Michael wrote "I like my Mom". As a parent, it doesn't get any better than this. Please keep Michael in your thoughts and prayers, JoAnne.

A picture's worth a thousand words ...

This is what Michael's face looks like these days. The bruise and little cut just in front of his right ear are where he walked into the corner of the counter last weekend. The scrapes on his forehead, left side of his nose, right nostril and tip of his nose are where he took a header down the front steps the other night. And, the long scratch that starts just below his right eye is from you know who (Buster). And to be honest, it looks a LOT worse in person than it does in the picture above. We're keeping Neosporin on them in hopes that they will all be healed before school pictures next Tuesday.

We went tonight to sign Michael up for soccer and to sign Buster up for obedience classes. I will let you know how both go. Until then, please keep Michael in your thoughts and prayers, JoAnne.

It's back to school ...

Today was the first day of First Grade for Michael and ...

... Buster gave Michael kisses ...

... to let him know he was going to miss him.

Michael was excited to go to school today and when he got home, he said his favorite part of the day was recess. Only one of his friends from last year is in his class but he said that was okay because he already made a new friend today.

His teacher had sent a paper in the mail last week on which she wanted all her students to write their goal for the year. Michael wrote that his goal is "to learn to shoot baskets better". I was kind of hoping for wanting to learn to read by himself or do addition or something else academic but I guess not. But, I know that he really does want to learn to read and do math so I am not too worried.








This afternoon when Michael got off the bus, we went to the eyeglass store to pick up Michael's new glasses we had ordered last week (since Buster ate the last pair) but they weren't ready yet. I let Buster have the run of the house since we would only be gone a few minutes - BIG mistake! He decided to eat the folder with Michael's papers from school, today's mail and a pillow. (Do you notice a theme here?) So, I have to write a note to Michael's teacher on the first day of school and tell her that the dog ate Michael's homework. Not a great start to the year.

He looks so sweet and innocent, doesn't he? Don't let him fool you. As my Dad says "he sure is a handful". Life certainly isn't as quiet as it was before we got him but it's also a lot more enjoyable. Michael has a lot of bruises all over his body but his blood counts have recovered from chemo so we've ruled that out as a problem. After talking to Michael last week, Dr. Kennedy decided to call them "Buster Bruises". And as if to prove the point, Michael and Buster were outside playing tonight and Michael took a nosedive down the front steps. So, now Michael has a few more "Buster Bruises" on his face. At least he didn't break any bones!

Michael has informed me (a couple of times) that he has always wanted to learn how to play the piano, so I am going to look into that. I think that is a great idea since Michael has loved music since he was a baby and the discipline of learning to play an instrument would be good for him. My nephew, John, and his wife lost their home and all of their belongings to fire on Sunday and yesterday Michael was helping me gather things to give to them. He found a radio and added it to the box saying we have to give them a radio because everyone likes to listen to music. I was just touched that he wanted to make sure someone else could enjoy something that means so much to him.

Until next time, please keep Michael in your thoughts and prayers.