Friday, August 29, 2008

So I have this problem, it's called HYPOCRISY

So, I have this problem. It's called complete and total hypocrisy.

Here I finally post yesterday and all I do is whine, whine, whine, cry and complain. When my kids start their days like that, I give them ONE opportunity to turn around their attitude or they will lose a privilege - friend playing, crossing the street (which severely limits their friend-playing options), bike riding, scooter riding, treats, etc. According to my attitude yesterday, I deserve to lose one privilege. I hereby punish myself by taking away my right to make dinner. No wait, I take away my right to clean the toilets. No even worse, I take away my right to file any mail or coupons today.

Seriously, though, my hypocrisy is so thick you could eat it with a fork. Yuck.

Here I whine and complain that my shoes are discontinued, but didn't tell you I found ONE pair left on Ebay for less than $20 with shipping (provided they come as I assume they are going to and not a different line which just happened to me with the trampoline.)

I tell you I assembled the trampoline and the double glider by myself as if that is some punishment on me, but honestly, I stay home and don't currently work. Isn't that part of my current job description? And it isn't as if Brian doesn't WANT to do it. It breaks his heart to watch me do it and that is why he retreats to the basement and watches TV as I do such projects. You see, the hypocrisy doesn't end or start with me sitting here and writing out my complaints. Oh no. As Brian sits over my shoulder and tries to patiently give me advice on how to assemble the furniture or tries to hold something steady for me or tries to hand me the correct part, I snap at him for various stupid reasons that make me blush in humiliation just thinking of them, not the least of which is it simply gets on my nerves to have people stand around and watch me possibly screw up.

Sometimes I even cry to Brian just because I feel "so burdened." Are you kidding me?

This is the guy who is battling one of the most aggressive forms of brain cancer known. He has undergone 4 major brain surgeries and several minor brain surgeries in 11 years. He has submitted himself to various forms of radiations. He has had 2 total hip replacements due to avascular necrosis as a result of the high dose of steroids he had to take. He suffers from major sinus issues I am sure that have become exacerbated by the numerous surgeries and chemotherapies he has endured. He lost a large percentage of his right side functions due to his April 2007 surgery. He can't use his right hand much at all. He walks with a significant limp because he has to will his right side to move. He taught himself how to do most everything left handed. He struggles cutting his steak because, come on, you need two hands to cut a good medium rare T-bone, but he often refuses to let me do it for him. He can't speak the same as he used to and is constantly interrupted and his sentences are constantly finished for him. He tolerates chemotherapy every 14 days right now and feels like crap for 6 out of those 14 days. And I CRY THAT I FEEL BURDENED?

I know what you are thinking of me right now and believe me, I think it of myself on a regular basis.
Brian endures all of this, and I am inconvenienced because I have to put together a few more things and pick up the slack on a few more household chores??? What the hell??? Where is my perspective?

I don't write this to get those "don't be so hard on yourself" or those "you are so strong" comments. Seriously. I. DO. NOT. I am human and I am not strong and I take it out on the very person I should be supporting the most.

I write this because I want you to understand the kind of person Brian is. I created this blog originally to notify our family and friends of Brian's condition. I have used it as a platform to chronicle our lives with kids as well. I have also used it as a way to vent my frustrations. I have used it as a soapbox for my opinions. But today, I use it to tell you that my husband, Brian O'Neill, is one of the most amazing individuals you could ever meet.

He endures all that I detail in that paragraph above, but he never complains. He is a thirty-five year old man who has had so much stripped away from him, but he handles it with more optimism, dignity and grace than most do when faced with a bad call at a kids soccer game.

Example: When asked if his speech issues bother him, he replies like this.

Example: Yesterday when begged by his 5-year-old who simply wants his Daddy to play with him, he finds a way to maneuver himself onto that trampoline, get onto his shaky feet (this is hard for him with those right side deficits) and muster the strength in his left hand while willing his right hand to play along to throw that little boy in the air laughing hysterically all the way to his bouncy fall on the mat. I watched that yesterday and marveled at his dignity while feeling so ashamed of my own self-pity.

Example: He has found a way to play catch with his left hand only. He can catch the ball in his right-handed glove (the glove that goes on the left hand) and throw it with the same hand.

Your life, if you could meet this man, would be better because you sat down and had a conversation with him. You would be touched by his empathy. You would laugh at his wit. You would be awed by his optimism. You would marvel at his character. You would take some of it with you and you would make the world a better place because it started with him.

And I think, when I reflect on all of this, that my hypocrisy and my snapping at him and my complaining is more a reflection of my own self-pity at the incomprehensible thought of losing this man from my life. It isn't the extra work that burdens me. It is the constant threat of life without him.


Thursday, August 28, 2008

I have calluses from all the screwing....

Where have I been?
Have you missed me?

My last post was a week ago. I find myself a bit uninspired lately for several reasons, not the least of which is my Uncle Robbie's departure from this world on Tuesday morning. Losing another relative to cancer makes this dreadful disease so much more prevalent in my life again and I find myself over analyzing everything Brian does. Is he walking slower than usual? Is his speech worse than last week? Why is he so tired? Why is he watching TV instead of interacting with the kids and me? and so on and so forth and scooby dooby doo.... (name that song)

Aunt Sally gave me a free pass for missing Robbie's funeral. In fact, I think she pretty much graciously uninvited us as the best gift of love ever. 1) It is over 9 hours away from us. 2) My kids are in school and Grant is in half day school making the logistics of getting someone to help with the kids complicated at best, and taking them out of school for 2 days in the first two weeks of school to attend a funeral 9 hours a day isn't very reasonable. 3) When you are in the midst of an everyday battle to try to beat the cancer in your own life, the last thing you want to do is attend the farewell of someone that just succumbed to it. 4) Brian feels good about 8 of every 14 days. He really doesn't want to spend 3 of those days at a funeral. Call us selfish. We reserve the right to be so every so often.

Awkward Segway #1 -

We had a party for some friends and family on Saturday - those that helped us pour our new patio. Isn't it lovely?

Preparation for a party, no matter how laid back, is time-consuming, as you all know.

I am 3 days behind on laundry which means I haven't done laundry in 6 days because I try to do it every 3 days. The reason for that is that SINCE the weekend, I have spent HOURS turning approximately 3,761 pieces of this:

into exactly TWO final pieces.


and this:

which is now anchored in the ground so that THIS can't happen again:

(April 2008)

All projects accomplished pretty much BY MYSELF. Because, Brian's right hand just does not work much at all these days and these are big tasks. Luckily, we have acquired quite a few tools over time and they help tremendously with said projects.

Awkward Segway #2

As a child, my sister struggled with Fall allergies. Ragweed, we assume, but who can be totally sure, right? Anyway, every school picture taken in September had my sister looking like a North American Native Eskimo with her closed up puffy eyes. And I am not insulting North American Native Eskimo's or my sister, but she just didn't look like herself. We had to keep the house closed up on beautiful Fall days because of her allergies. I remember her walking Zombie/Frankenstein-like to the bathroom in the mornings because her eyes were crusted over with muck from the night. I don't remember feeling much sympathy because I was a teenager and what could be more important in the world than the drama I was creating in my own life back then?
Anyway, as an adult, I have developed Spring and now FALL allergies. Lucky me. This would not be quite so bad except that I love early fall/late summer semi-hot days and the above projects mentioned? they had to be done OUTSIDE. This has caused me to spend my evenings inside with a box of kleenex, an extra dose of Zyrtec and a beer because, dude, beer totally dulls cures all allergies.

Awkward segway #3

My kids are back in school, as you may have read last week. This means, we are up at 6:30 in the morning, fighting and battling non-stop until they leave me at 7:15. Actually, let me give you a bit more detail:

6:00 my alarm goes off
6:09 my first snooze goes off
6:18 my second snooze goes off
6:27 my third snooze goes off and I get out of bed and get dressed in my workout clothes
6:30 I wake kids and help them get dressed while they whine and complain and cry and tell me to turn off the light because in the morning light apparently fries little boys' eyeballs.
6:38 they choose breakfast and Grant eats it in about 98 seconds. Gavin spends the next 10 minutes explaining to me that he has forgotten how to pour milk, where the bowls and cups are and how to insert a spoon into his mouth. Also, he apparently cannot eat a poptart or nutrigrain bar unless it is in bitesize pieces. Which is ridiculously ironic because if it comes out the wrapper cracked or broken, he refuses to eat it and opens a new one.
6:48 - I make Gavin's lunch and continue to nag him about EATING before he runs out of time. Grant is putting on his shoes so he can go outside and play before the bus arrives.
7:00 - I am fussing at Gavin to FINISH EATING and brush his teeth so he can be ready for the bus.
7:05 I wet Gavin's head while he runs away shrieking because apparently? spray bottles of water melt little boys' faces in the morning as well as light frying their eyeballs.
7:10 Get on backpacks and go out waiting for bus.
7:15-7:20 bus comes. Grant hugs and kisses me and giggles while I throw him kisses after he is seated until he is out of sight while Gavin casually ignores me and slightly waves as he enters the bus IF no one is looking.
7:30 - I eat my own breakfast and have some more coffee.

Remaining of morning: I work out, I shower and dress. I sometimes run an errand. I work around the house. Grant is home at 10:55. In the afternoons, I run more errands if necessary and I work on above projects. I weed a bit and water a bit. I go through the mail and pay bills. I balance statements, etc. I make and cleanup lunch and dinner. I do homework or review work with the boys from school. Also throw in laundry, house cleaning and maintenance and anything else domestic.

7:15pm - boys are in shower getting cleaned up for bed. Read a book, say prayers and talk a bit until lights out between 7:45 and 8:00.

I crash around 9:30 or earlier these days to start over the next day.

In short, I am tired and I do not take much time for this blog. And I do not take much time to read any blogs. Because, there is this little problem of numbers. The two biggest ones being1) more than 8 - as in I need more sleep than that lately. and 2) more than 24 - as in there will never be more than that many hours in a day.

My hands and shoulders hurt from all the forcing, turning, screwing, and leveraging I have been doing the last two days. I have calluses on my hands. I have small cuts and blisters between fingers and I don't really even remember how they happened. And the trampline frame above - not the same one as we were replacing from "the incident" so I had to re-engineer the spring placement and am not overly optimistic of the useful life of the mat. AND, Asics discontinued my running shoe and replaced it with a joke of a model totally lacking in arch support and cushion giving me much foot pain during my morning run unless I want to fork out an ADDITIONAL $40 for the upgraded model with adequate support and cushion. And I realize I sound like a neurotic, New York, Jewish, bitchy mother-in-law, but still...

And with Robbie's death on Tuesday, all I can think of is if something happened to Brian how would I do all this and work 40 hours, too?


Friday, August 22, 2008

Uncle Robbie

My Uncle Robbie, my Aunt Sally's husband, who I have mentioned on my sidebar as having widespread cancer is succumbing to this awful disease that does not deserve to be in the same size font as the rest of the words in this post. He has been sent to a hospice center to be made comfortable while they wait for his inevitable death.

And my heart breaks in an empathetic way for my Aunt Sally that only someone who has been married to someone with cancer can comprehend.

And my heart fills with tenderness and compassion knowing that Sally is a cancer survivor herself.

And my heart explodes with sympathy for Sally and her kids, Michelle and Scott, and their kids as they spend these last remaining days with Robbie.

And I struggle with my own selfishness because as much empathy, tenderness, compassion and sympathy as I have for Sally and my cousins it is seemingly impossible for me not to lament my own situation in the midst of their current trial. Brian's constant battle for his life is reborn in my world. In my world of school and kids and parenting and dinners and errands and cleaning and laundering that makes it easy to forget the cancer in the middle of it all.

And, friends and family, what Sally is currently going through - well, let's just say... NOTHING SCARES ME MORE.

*images courtesy of google images

Thursday, August 21, 2008

Murphy's Law of the (insert Roman numerals here. I'm not googling it right now) Olympiad

While watching the ENTIRE women's soccer gold medal match between USA and Brazil, all NINTEY MINUTES of regulation while working out and folding clothes, then all THIRTY PLUS MINUTES OF extended time, I leave for 2 minutes to go to the bathroom and check my email. The US, NATURALLY, would score THE ONE GOAL OF THE ENTIRE GAME during that. I don't even LIKE to watch soccer on any other given day. And THAT would be why! (although will admit it was a great game)

To the cameraman and sports announcer who feel the need to interview a sprinter less than ONE minute after he finds out he is disqualified and stripped of his silver medal due to stepping on the line:

To my readers:
Sorry about the cussing. It was warranted.


almost got what I asked for

On Monday, I lamented about my boys growing up, about how parenting is in the end, all about letting go, about watching them spread their wings and begin to soar without me and how difficult that is, about how secretly I wish they needed me as much as I want to be needed, bla bla bla, sap sap sap, pity pity pity….

On Wednesday, I put Grant on the bus for the first time. There is something you need to understand about Grant first. Grant is all tough guy on the exterior. Grant is the kid that you sometimes don’t want your kid to play with because he will inevitably find his way across the street you just forbade him to cross. He is the kid that will gang up on your kid if he sees an easy target and another kid is bullying first. He is the kid that will throw food in your living room/garage/wherever if he sees someone else do it first and thinks he can get away with it just because he has always wanted to do it. He is the kid that HAS dumped his water bottle that I JUST told him he couldn’t have so he could PEE in it and then dumped that pee in my outside planters and then got himself ANOTHER water bottle to drink. He is THAT kid. I battle and struggle with Grant DAILY regarding making good choices NO MATTER WHAT CHOICES ANYONE ELSE IS MAKING. Sometimes it sinks in. Sometimes it doesn’t. The Grant above is the Grant that most people see. Those that know him best also know he is surprisingly uncomfortable being the center of attention. He is uneasy in new situations. He is shy meeting new people. He is also tender and affectionate. He still loves to be held and he adores his mommy. He does, what can I say?

Anyway, I put Grant on the bus for the first time on Wednesday morning. I had my camera all ready and the neighbor boys he pals around with (grade 3 and 5) were at the stop, too. The neighbor boys’ mom told the neighbor boys to wait to get on the bus until Grant went first and I could get my photo. So, they did. Grant hopped up the first step and I shouted, “Grant, turn around so I can get your picture.” Mrs. T, the best bus driver in the whole world, stuck her hand out and said, “Grant, wait.” (so I could get my picture) He takes this as a sign of having done something wrong, while being the center of attention in a new situation (see above), and runs off the bus sobbing into my leg. Whoa! What?

I begged him to get back on the bus assuring him he did nothing wrong. Mrs. T. apologized and begged him to get back on. Suddenly, visions of “getting what I asked for” flooded my brain and I foresaw myself dropping off my 22 year old college senior in front of his lab cuz he never got comfortable riding the bus as a Kindergartener. Okay, so I exaggerate, but I did foresee myself driving my Kindergartener to school for the next few weeks. I quickly realized that I WANT him to grow up and do it well. Especially in situations where he has no choice. The bus driver let me ride around the corner to the next stop with Grant where he allowed me to get off and he rode by himself for a while. He did fine the rest of the day and gave me vivid details about the day of school. I love that about him.

only picture I got before school

after school

As far as Gavin goes, he is now in full day 1st Grade and loves it. Loves his teacher so far. Loves lunch and recess. (In half day Kindergarten, they didn’t have lunch or a snack and they rarely had time for recess.) He says 1st Grade is “so easy” and “the same as Kindergarten only they have two carpets.” He hops on the bus without even a wave. He hops off the bus and when I ask him about his day, he ignores me completely and asks me if he can play with the neighbor boys. So, he is giving me, thus far, a huge dose of NOT what I asked for and I am glad for it.


Tuesday, August 19, 2008

Kevin and Heather

Kevin and Heather Baer

Brian and I have a large family with over 60 first cousins between us, so it seems there is always some celebration going on. However, we have been in a wedding drought for a few years. This year was make up year. Brian has 3 cousins' weddings this year and my brother also married this year. He remarried last weekend as a matter of fact. As I attended this wedding and the subsequent celebration, it occurred to me that this is only the second second wedding I have ever attended. Both Kevin and his new wife, Heather, come into the marriage with children of their own. Kevin has Andrew-19, Lauren-15 and Lexie -11. Heather has Mackenzie -nearly 9. I tell you that so as you look at these pictures, if you don't know my family already, you know some details.

Here are some highlights:

The night before:

my dork sister and her husband, Matt.

Andrew and baby Hannah (my new niece)

me and Heather

Grant, Gavin, Andrew, Logan swimming at the hotel

The wedding itself:

Heather given away by her Dad, Gary, and son, Mackenzie.
Most of my pictures of the actual ceremony did not come out as the church was extremely dark. So my pictures are either blurry since I was not on a tripod or they have huge shadows behind the people due to the flash. The ceremony was simple and sweet with an exchange of vows and a pledge from Kevin to Mackenzie and from Heather to Andrew, Lauren and Lexie.

Grant and Logan throwing rocks in the church parking lot. No, that is not the church in the background. It's some trailer in a lot next to the church. It is Kentucky, after all.

Some family pics:

the new merged family
our entire familythe grandkids (Gavin, Andrew, Logan, Grant, Lauren, Hannah, Mackenzie, Lexie)

I was familiar with what kind of pics to expect when you give your DSLR camera to your 5 year old. Here is what you get when you give your DSLR camera to a teenage boy:

I also don't have any pictures of the reception because I instead took several pictures of Heather's family and their friends with Kevin's DSLR for them. I was 'pictured out' by the time the dance started, plus I enjoyed watching Grant play hard to get with one of Heather's cousin's adorable blond-haired daughter. Each time she would show interest in dancing with him, he would run outside to "inspect a sore on his arm." By the time he got over himself, the girl and her family had to leave.

Congratulations to Kevin and Heather!


Monday, August 18, 2008

how difficult yet fun parenting is...or was....

When our first child entered our lives, I immediately realized how difficult yet how fun parenting is. From day one, my role as parent was to help our children transition effectively from one phase to the next. It started with feedings and spreading those feedings over a larger span of time until they were sleeping through the night. Then it became fewer feedings until they could get to 3 meals a day. It was difficult, full of frustration and sleepless nights, but it was fun. As they got older, the phases became more about functioning in life – stopping tantrum-throwing, walking, potty training, eating table food, using the correct words to express thoughts, etc. Once again, it was hard, but it was fun and often funny. When the preschool years came, the phases became less definitive and more about me and my own issues – babysitters, preschool, watching them fall and get hurt as they learned to ride a bike/scooter/etc., dressing themselves, adding responsibility to their lives, etc. It has been hard and full of battles, but honestly, fun.

Parenting is difficult because while everything in me wants to freeze them, hold them, and protect them, my MAIN responsibility in life with respect to the children is gradually forcing them to become independent of me despite myself. Nothing can prepare a parent for how difficult and how counter-intuitive this can be, yet oddly how fun it can be. However, even more difficult than forcing the children to grow up is watching the children become very good at growing up and just eager enough for it to sting. I should take their enthusiasm as a sign of a job well done, and I shouldn’t want them to react any differently, but I secretly do. I secretly want them to need me as much I want to be needed.

Today my oldest went to 1st grade for the first day. He will be leaving me for a full day 5 days a week for the first time ever.

Today, my baby went to Kindergarten. He will be leaving me for a ½ day 5 days a week for the first time ever.

And I am beginning to see that many of the “fun” times of forcing my kids to grow up are 1) no longer forced and 2) no longer fun for me.


Sunday, August 17, 2008

recipe for emotional disaster

A recipe for emotional disaster...

youngest child starting Kindergarten tomorrow
oldest child starting first ever full day of school this week
coming home from the high of a wedding weekend with my family
husband enduring chemo again tomorrow
over 1500 miles of road time in 10 days.
weight gain
contemplation of re-entering workforce after 3 years

Directions: Simply combine all at once in one thirty-something woman.

Results: Unexpected waterworks scattered throughout the day. Will make enough to serve several hours.


Thursday, August 14, 2008

Dear people-that-are-currently-bothering-me...

Dear Grant:

Congratulations on successfully learning to tie your shoes this week. I am so proud of you and your determination. You are growing up so fast, one would even think you were ready for school soon. Oh wait, that comes next week. ....sob...

Dear Gavin:

Grant can SO tie his shoes. Get over it. If you would practice, you could too.

Dear Matt Laurer:

Are you aware that the US Olympic team comprises several hundred athletes? Several hundred people that have trained, sacrificed and qualified to be present and represent our country at the Olympics. Do you think you could mention a few of those people?? Not to discount the amazing abilities and athleticism of Michael Phelps, but there are many more athletes with amazing stories and determination present in Beijing right now. Also, when interviewing someone about their medal, do you think you could do it without mentioning Michael Phelps' name mid-interview? How about Jason Lezak's last leg of the relay to come back from a full body length in 100 meters who clocked the fastest relay sprint on record to beat the favorite by .01 seconds??? Maybe he could get a little more camera time for accomplishing such a feat? This is like listening to the media constantly discuss Tiger Woods despite the fact that THERE MAY BE FIVE to TEN PEOPLE AHEAD OF HIM. Yes, Tiger may be great, but how about the leaders, folks? Or the other golfers who are currently playing and not out due to surgery? Michael, you are awesome, but something tells me even you would rather your fellow Olympians receive a bit more credit.

Dear Self:

It never fails that nature calls during a quick trip to ANYWHERE when toting the little ones. You should have learned to expect this by now. Do not get frustrated with the kids for having to poop. Everyone poops. However, when your 5 year old tells you he can hold it so he can play on the swingset display at the hardware store for 5 more minutes, DO NOT BELIEVE HIM. You idiot.

Sunday, August 10, 2008

I think he has a future in political truth telling

Nothing besides what I have recently wrote about has been blogworthy in our lives the last two days. Personally, I feel that is an accomplishment considering what "could be" constantly in our lives. This is our last week before school starts. We are at a wedding on Saturday, in St. Louis on Sunday for a pool and piece of advice party (where each family member writes advice on a piece of paper to the college bound graduate), then off to my folk's to spend some time with my family for a couple days before we head to Paducah for the following weekend for my brother's wedding. (for which we actually came up with a gift to give the person who has or buys everything) Just thought we would throw as much as possible into the last week before school starts and our 1-1/2 year sleeping-in trend comes to a sudden and ABRUPT HALT with a 7:20 bus pick up. mmhmm 7:20 AM. My kids have not intentionally woke prior to 8:00 for 18 months.

Anyhoo, since my parents are still the last two remaining people on PLANET EARTH with dial up, I will not publish or comment while at their house for a few days. See ya when I return.

I leave you with this post I had sitting in my "never been published" area since March.

Grant got some Flarp for his birthday. When you push your fingers in the putty, it makes flatulent sounds. Yes, every 5 year old boy in the free world needs something else to add to his obsession with bodily functions. Flarp’s saving grace is that it smells like Skittles.

When putting the boys to bed Sunday night, Brian disrupted the process by bouncing in and flarping a few times, then leaving. Grant, naturally wanted to try it again before he went to sleep.

Me: No more. We are done.
Grant: Just one more – so Daddy can hear a loud one.
Me: No.
Grant: Why?
Me: Because it is time for bed. AND because you were not responsible and you lost the lid to it.
Grant: I didn’t lose the lid.
Me: Then where is it? (knowing he has looked for it already today)
Grant: I just *hided* it.
Me: Where?
Grant: Ummm… Someplace really good.
Me: Grant, it is time to get the lid from the hiding spot and put it on the Flarp since it is time for bed now. So go get it from its really good hiding spot.
Grant: ummm… I think I *hided* it so good that I can’t *bemember* the hiding spot.
Me: Then that is losing it. You lost the lid.
Grant: No
Me: Yes. And you lied about it. You lost it AND you lied.
Grant: I didn’t lie, I tricked…

I think he is a future politician.


Saturday, August 9, 2008

the savvy source

Okay. So just a quick post to let you know that I have added an ad on my side bar for the Savvy Source. This is a program sponsored by Leapfrog. When I signed up for the program, one of the objectives was to get us to mention it on our blogs. Well, I am totally not comfortable doing that unless I have checked it out first. I am also not one to forward paranoid email junk and other miscellaneous chain letters. I just don't do it. American Heart Association DO NOT CALL ME and ask me to send out letters to 6 of my neighbors. I won't do it. I get those letters from my neighbors and they make me feel guilty. We give. We tithe. We are charitable. I don't need guilt to help me do it. I won't do it to others.

ANYHOOO... I thought, I will mention it on my blog if I can first tell my readers what to expect. So, here is what you can expect. Do the quiz on the left and you will find yourself in a new website with many more questions. Way more than I expected. At first I was put off by it and a bit irritated. But, honestly? I thought, what the hey? So, I did the quiz. Well, part of it. I still haven't finished it. There is a series of around 10-15 easy to answer questions about your child's progress in different areas of developmental progress (language, arts, math, etc.). It is probably only applicable to those of us with children under the age of 9, but more geared towards preschool. So, I did this for the area of Language. When you are finished with an area, it gives you an assessment of your child's progress and then recommends products for your child's level and interests. It was pretty cool because one of the neatest things it recommends IS FREE at-home activities you can do with your child. It was worth it for that alone. I have now completed the math assessment and was impressed at all the activities it suggested and am considering some of the books, etc. that it suggests. You can go back and do another area like art, social skills, etc. as time allows.

So, thought I would mention it to anyone out there that likes to do quick surveys, likes to assess their children's progress and is looking for ways to help stimulate their child. I know with school fast approaching, realizing we have done little to learn this summer, I am looking for lots of extra things to do at home with both boys right now.


Thursday, August 7, 2008

Because you don't get enough medical jargon out of me regarding my OWN family...

So, Mindi called on her way out of the cardiologist office at St. Louis Children's today. Hannah had her echo today with the pediatric cardiologist (pc for future reference in this post). Her echo was normal. They almost let them go. The pc said, let's do a ECG (electrocardiogram) before you go. They did. It was not normal. Here is what they found.

Hannah has a condition called Wolff-Parkinson-White (WPW). It is a condition in the heart where-in an additional electrical pathway exists between the upper and lower chambers. Many people with WPW have no issues or problems. However, WPW can set people into different conditions called arrhythmias. The most common of these caused in children by WPW is called Supraventricular tachycardia (SVT). This is a condition in which that additional pathway/conductor sends an extra signal to the between the chambers of the heart causing an extra beat and keeps doing it until basically the heart is racing extremely fast. It has to be stopped by external measures or it will continue and get worse. WPW can also cause Atrial Fibrillation in more extreme cases. Hannah's ECG at the hospital last Thursday night also showed this condition. However, they do not think she was in SVT that night. Personally, that surprises me, but just because I spend a lot of time with Brian at the doctor and researching medical stuff for us, does not make me a doctor. Regardless, what happened with Hannah that night is what led to this diagnosis, so thank God for that.

Signs of SVT in infants are sudden increases in heart rate, difficulty breathing, lack of interest in eating, lethargy, and noticeable chest palpitations. Naturally, since the child is an INFANT, the INFANT, by design, is unable to tell you he/she is experiencing such symptoms. So, Mindi and Matt are to acquire a stethoscope and periodically check Hannah's heart rate. If the condition continues as she gets older and sets her in SVT, dizziness, uncomfortableness, difficulty breathing, etc. can occur.

You are the lucky parents of a baby with a diagnosed heart condition! What do you do now?!?!? Nothing. mmmhmm. Nothing. Besides watch for symptoms of SVT or more serious heart arrhythmias, the instructions are to do nothing except follow up with the pc every 6 months. Hannah COULD outgrow this. Hannah COULD never have a problem from WPW. She COULD go into SVT, and if they think she is in SVT, then they are to try home external measures stimulating the vagus nerve to bring her out first such as ice on the face and neck, gagging her and taking her temperature rectally. (Wha??? cuz apparently having something up your butt calms the heart stimulating the vagus nerve?) As she grows, if she is in SVT, she will be able to communicate it as it is a rather unpleasant condition to be in. She may also be able to stop it on her own with cold, fizzy drinks, popping her ears, holding her breath, etc. Yes, strange, but google it, you will see. If these measures don't work and she has been in SVT for a while (hour) they are to calmly take her to the ER where medications will be administered to bring her out of the arrhythmia.

Many children with WPW never have any SVT or other arrhythmias. Some do. There is no evidence that being in SVT damages the heart long term. Some require medication because of complications. Some don't. There are procedures such as an electrical impulse attempting to close the extra pathway available. Hannah should stay away from stimulants like caffeine, smoking, alcohol and certain medications. There are no restrictions to her activity, but as she is older, she will be able to tell if strenuous activity causes her problems.

Good question. They were stopping for lunch at Buffalo Wild Wings to Mindi's dismay when she called because Matt needed a beer. Mindi was doing okay. Taking it all in. I was googling stuff and reading her stuff as she listened on the phone. As with researching ANYTHING, you are going to read best and worst case out there. So, you have to take it in stride. Then you are going to read a site that says MEDICATION NEEDED only to realize you are on a drug company's page, etc. You have to filter and do what is best for you and your family. I am so glad I will be able to see them Sunday and a couple days after.

Please keep them in your prayers:
For Hannah to outgrow the condition and God to remove it from her life
For the condition to give her NO complications
For easiness and rest of those surrounding Hannah. (china doll syndrome, as I am going to name it)
For ease of mind of the parents.
For a normal life.

I would love to close this post with a recent picture of beautiful Hannah, but as luck would have it, she has also been plagued with a vicious case of baby acne, according to Mindi. So I will leave you with a photo which I have posted before:

Thanks for your thoughts and prayers and wishes. Mindi reads these comments, too, so please direct your comments as though they are for Mindi today.


Tuesday, August 5, 2008

A prayer request...

I am writing today to request some prayers. This time, it is actually, not for my immediate family. Well, kind of. At what point in time does your sister stop becoming your immediate family? I mean, now that I am married, are my husband and kids my immediate family or are my parents and siblings my immediate family? Get back to me on that one will ya? Anyway, I digress.

You may remember that I left sweet beautiful newborn Hannah Jane and Mindi and Matt and Logan a little over two weeks ago to return home to my house and husband. It was hard, but in the end, my husband does rub my back and feet and Mindi doesn't.
Well, just as I suspected they all got along just fine without me. Everything was going quite well, Hannah was waking one or twice to eat during the night, but going right back down. She had her well-baby visit on Thursday last week and she looked great and all was fine. Thursday night, July 31, after her 11pm feeding, something happened in Hannah. She tensed up, spit up, vomited, screamed, wheezed and could barely catch her breath for several minutes, so Matt and Mindi rushed her to the hospital. She developed sort of a foamy residue around her mouth and eyes. She would let out a blood-curdling scream and then gasp for air several seconds later. The staff immediately suctioned her out and got lots of mucus from her mouth and nose. After many hours and tests, they discovered she tested positive for RSV and for reflux.

Hannah's doctor was there that morning because of a delivery (she likes to be present for her new patient arrivals) and discussed the situation. She said the RSV was not overly concerning to her because she showed no symptoms to date - no fever, no stuffiness, NOTHING. She said she really thought it was more of a fluke. That Hannah probably vomited and was choking on it. This was before the Upper GI showed extensive reflux. So they are treating her for reflux. She is supposed to eat less and she is taking Zantac (or something like it, Mindi correct me, PLEASE) However, the poor little thing is starving and Mindi and Matt have begun feeding her more than the recommended 2 oz. She is over 8 lbs and is 3 weeks old, for pete's sake.

Prior to this episode, Hannah had no symptoms of reflux. She has been very content, a great eater, minimal spit ups, good sleeper, just a great baby. Since this episode she has also had NO ISSUES. She was to have her first follow up visit on Friday.

Today, Mindi's doctor called her to tell her Hannah's EKG administered that night at the hospital was abnormal. Abnormal in the sense that Hannah's heart rate was over 220 (normal is around 120-160). They administered the EKG just after they suctioned her and she was still very upset and screaming a lot and not breathing easily. They informed Mindi of the high heart rate that night, but nothing else was discussed about it. Hannah had a chest X-ray and her heart and lungs looked fine. She had a full body scan and all looked fine. Hannah's heart rate that morning at her well-baby visit was fine. HOWEVER, as procedure dictates in the hospital, they sent the EKG to the pediatric cardiologist in St. Louis for review.

That pediatric cardiologist wants to see Hannah. The doctor only comes to their town once a month and is full for this month (and on vacation to ask for him to squeeze in Hannah). So, Matt and Mindi are taking Hannah to Children's in St. Louis on Thursday, August 7 for an echo cardiogram and a consultation. Hannah's doctor, based on everything that has happened so far, thinks the accelerated heart rate was a result of her very upset condition that night since she did not have the heart rate issue at any of her prior visits. However, because of Hannah's age and because of how high the heart rate was, the pediatric cardiologist wants to see Hannah to rule out anything else. That accelerated of a heart rate COULD be a sign of other issues that need treatment, so this is a good idea.

Mindi is thankful they found this and are being so thorough, but this has been a very hard few days for them. Come on, let's be honest, she's scared shitless. This is her brand new baby. We would all be a mess. However, there is no need to worry until there is something to worry about. Please pray for them:

No issues with Hannah's heart

Perfect 3 week old health for Hannah

Wisdom and Guidance for Hannah's medical team

Peace and encouragement for Mindi, Matt and Logan

No insurance issues and easy coverage (they are on Cobra due to Matt's job situation)

Employment opportunities for Matt



Monday, August 4, 2008

what rocks and what sucks by Angie

I never have creative words for Brian's results day, so I thought I would give you my analysis of the day instead:

Sisters-in-law that babysit kids for free on said results day and then tell you to spend the day shopping ROCK!

Doctor's visits for any reason other than pregnancy (not that I would know on that one cuz infertility sucks, but adoption rocks) and well baby visits SUCK!

Fathers-in-law that spend the day with your hubby so you don't have to drive him crazy with your antsy-ness and can shop instead ROCK!

Back to school supply shopping with half the town SUCKS!

Having 5 of 25 checkout lanes open during lunch hour when half the town is checking out SUCKS!

Wal-mart's floor staff generally SUCKS! (though there are a few random rockers in there)

Finding all school supplies except HIGHLIGHTERS at one store both ROCKS and SUCKS!

KFC Boneless wings neither ROCK nor SUCK, exactly.

Chemo SUCKS!

Test results that show continued decrease in the area of enhancement and overall stable results ROCK!!!

Continue on the course which we have been following since April - Avastin and CPT-11 every two weeks as Brian continues to tolerate.

Next test and results will be in late September if all continues as is.


Sunday, August 3, 2008

Give a sister some luv

I have a real life friend who recently started a blog. She must be very cutting edge in her writing because she has already received her first negative comment. Well, not exactly negative, but just not all that flattering. It took me many months and a very controversial post to ever get a negative comment. So, I am asking my readers to go check her out. I wanted to direct others to her anyway, so now is my good reason.

Her negative comment arose as a result of her husband's profession. He is in the ministry and apparently because he is in the ministry, my friend has less reason to look out at life and creatively write her vents, observations, etc. This is the hardest part of being a person of faith. Some people assume because I have faith that I must always be positive and donning rose-colored-glass. While I do try, and my friend tries, we struggle with everything in life the way everyone does. Because I am a Christian, some people think I shouldn't have fun, as though I should be sitting around quietly meditating all the time or constantly praying for world peace. Some people think I shouldn't partake in or enjoy sarcasm. I think sarcasm is hilarious - besides Leslie Nielson's literal humor ("This woman needs to be in a hospital." "A hospital, what is it?" "It's a large building with patients, but that's not important right now."), sarcasm is my favorite form of humor. My pastor uses sarcasm occasionally as a source of getting points across and as a way to engage the congregation or to simply lighten the mood. Sarcasm is funny. Sarcastically complaining about life is funny. To me.

There is no commandment that says, "Thou shalt not use sarcasm." or "Thou shalt not complain." or "Thou shalt not ask questions." No, we are encouraged to ask God questions and wrestle with that which we do not understand and that with which we struggle.

However, it is sometimes refreshing to be reminded that as a self-declared Christian, I am wearing a brighter "watch me" sign on my back than most. Many people are waiting for me to screw up and sin and fail so they can be the first to say, "ha, where is your God?" or "That is why Christians are hypocrites." To those people I will say, just wait around, and I promise I will give you reason to say all those things about me. After all, I am human and I will fail. Time and time again. My friend will, too. Being married to someone in the ministry certainly does not provide immunity from life's temptations and struggles. Too Bad. Huh, friend? It would be a lot easier if it did.

That is all for my rant for the day. Stay tuned tomorrow (afternoon or evening - appt at 9:45 with chemo to follow, so a long day) when I update you with Brian's results. Ugh. I hate this TEST AND RESULTS WEEK - test day, the wait, the results....


Friday, August 1, 2008

How I lost my Rock Star Mom status this summer

I stated in this post early in the summer (in fact I think it was the first week of the summer) that one reason I hated summer was the fact that I had to take my boys to the store and run all errands with me. I hated it because of the inevitable delays it causes me and because of the constant trips to the bathroom it entails AND because of the incessant requests for a treat at the check-out line.

There was an additional aspect that I hadn’t considered which developed over the course of the summer.

Normally, on days I would go to the grocery store while the kids were at school simultaneously for the last couple of years, they would come home to a fridge and pantry full of unexpected treats – new items awaiting their immediate after-school consumption. Fruit snacks, raisins, peanuts, graham crackers, cereal, popcicles, etc. They were none the wiser that these items had a non-generic equivalent until I would bring home the Justice League graham crackers I had purchased that day only because they were equal to or less than the price of their generic equivalent. And I was “SAAA-WEEEET” for it in their eyes. I was a Rock Star if I brought home a Scooby Doo box of cereal and they had no idea, nor did they care, that I bought it simply because I had a coupon or it was sale-priced. No, Mom was simply the bomb for providing such an indulgence.

Now that they are with me, they are suddenly aware their favorite cereals, fruit snacks, popcicles, etc. all have a Spongebob, Scooby Doo, Spiderman, Disney, insert-character-of-choice-here equivalent. . My boys have always been suckers for gimmicks and for on-the-box advertising. And I am now a constant drag for suddenly squelching their eager little desires for the item if it isn’t on sale or cheaper for whatever reason. You know it is getting to the point of sinking in, though, when you are able to make a grocery run without the kids and you get home and hear them exclaim when discovering the Disney yogurt in the fridge, “Yes! Winnie the Pooh was on sale this week!!!”

I can only hope their short-term memories will be wiped clean soon with readin’, ‘ritin’ and ‘rithmitic so I can reclaim my Rock Star Mom status in their adoring eyes.