August, September, October Update - continued

If you recall from the "Make A Wish Trip - Day One" post, we had a fantastic and memorable escort to and through O'Hare Airport by the by the Chicago O'Hare Fire Department on our trip to Orlando. 

As if that day wasn't enough, they were kind enough to invite Paige back for another visit and we arranged to see them again in late August. When we arrived we were met with a huge lunch spread and ate with all the firefighters at the fire station. 

We spent a few hours with these fantastic men and women at the Chicago O'Hare Fire Department who rolled out the red carpet for Paige (and us).  

Here is Paige trying on a Chicago FD helmet for size.  

It was a beautiful day, and Paige was invited to check out Tower Ladder 63 with Jim and a few of the firefighters. 

And then Paige and Jim got to see how high the tower ladder goes.

As you can see it goes pretty high. That's Jim and Paige in the bucket, at the top of the ladder. Luckily she has no fear of heights. 

And here they are back down on ground level. 

Next we got to check out one of their 'crash trucks' which are fire trucks specially equipped for airports.  

Paige got to ride shotgun in the crash truck for a little spin around the airport.

Can't ride in the firetruck without talking to everyone on the radio.

Not sure what was going on here but you can see she was pretty impressed with something.

Next we got to check out the Haz Mat truck with Lieutenant Jesse.

And back to the crash truck with Lieutenant Greg.

Paige and Lieutenant Greg.

After getting home from the Chicago O'Hare Fire Department we didn't think the summer could get any better. Little did we know. About a week later we went to the Make A Wish Yacht Blast For Kids, a wonderful event organized by the Make A Wish organization in conjunction with the generous members of the  Milwaukee Yacht Club where members of the yacht club host Make A Wish families for several hours on their boats. 

Shortly after we arrived at the marina we were introduced to Dick and Marla, who were kind enough to invite the three of us onto their beautiful yacht for several hours on Lake Michigan. Paige is sitting here with Dick who is looking pretty relaxed given he has given the wheel of this beautiful vessel to a 6 year old. 

 

Those of you that know me well are aware my computer skills are awful (my computer trouble shooting skills including pushing hard on the 'return' button, shutting the computer off and swearing, not necessarily in that order). With that in mind I'm proud to announce I've finally figured out how to link videos from You Tube onto the blog. Here is a video of Paige driving of this beautiful boat. 

Here are Jim and Paige sunning themselves on the front of the boat. What a great way to spend the afternoon.

Dick then took us up the Milwaukee River where we got to cruise through downtown Milwaukee and watch several of the bridges raise up to let us pass through. 

 Thank you Dick and Marla for a wonderful afternoon!

I still have more photos to upload for the past few months, but I did want to bring you all up to date on Paige and how she's been doing health-wise. I'm glad to report she recently saw her cardiologist for her bi-annual visit and her echocardiogram (and everything else) looked good. She has grown by several centimeters in the past few months and continues to have a fantastic energy level. 

In January 2012 we will be meeting with the orthopedic surgeon and an interventional radiologist to take another look at Paige's legs to confirm what changes, if any, there have been to her leg length discrepancy. 

August, September, October update

Whoops, several months have slid by without an update of the blog, sorry about that. Jim and I have both been putting in extra hours at work and a few things fell by the wayside. We had a very busy summer, Paige is doing very well, she is now all settled in to her first grade class at Big Bend Elementary.

Back to the summer of 2011. We made our annual trip to the local county fair and we always manage to find ourselves in front of the pony ride tent where Paige begs and pleads to ride one of the ponies (for $5 a spin). You may or may not recall we have a horse, Zee. He doesn't have the Shetland pony cuteness factor going on, but us paying good money to have Paige ride a sleepy pot bellied Shetland Pony around a circle for 4 minutes when we pay to board our horse is sort of is like an Eskimo going to the local 7-11 to buy a bag of ice. 

Most of the time we cave and she ends up riding a pony. This time we managed to convince her that the camel ride right next door would be more interesting, and she actually believed us. So here she is taking a spin on the camel.

After a bit of incredibly entertaining people watching we wandered over to the midway where Paige and Jim rode on this purple ride that spins your car in little circles as the entire ride goes in one big circle. That spells 'motion sickness' to me but Jim and Paige love it.  

Paige left the fair with about ten times more energy she had when we arrived at the fair (it could have been that late night ice cream cone, who knows) but fell asleep in the car on the way home.

Jim's 24 hour shifts at the fire station means Paige and I spend several nights alone (just the two of us) every week, and this sometimes ends up becoming some sort of fashion show where Paige parades around the house in various ensembles. Here is a photo I took one night after she and I decided it would be a funny change to dress up the dogs. This is Paige sitting with Kelsey, who is wearing (top to bottom) a tiara, a wig, a pink feather boa and plastic dress up shoes (yes, one is actually on his front paw). He was a really good sport about this and just sat there hoping this would earn him a Snausage. 

A few years ago the nice folks at the Herma Heart Center, where Paige goes for her bi-annual cardiac visits, told us about a wonderful summer camp in Minnesota for kids with heart disease, Camp Odayin. Funded by donations and run by volunteers, this camp is a wonderful place where kids with all sort of heart disease can go and be a 'normal' kid for one week each summer. 

Kids that are 6 and 7 go to day camp (located at Dodge Nature Center in West St. Paul, MN). Kids 8 to 17 go to Camp Odayin's resident (aka sleep away) camp, located  at Camp Knutson, several hours north of Minneapolis.

With a recommendation from her cardiologist, Paige went to her first year at Camp Odayin and she had a wonderful time (so much so that she continues to ask when we're going back to Minnesota). 

Here she is with other campers at a campfire (these are all photos supplied by the camp).

Here she is playing with another camper.  One of the incredible things about this camp is meeting up with other kids who have had open heart surgery, and for us its nice to meet other families who have been down the same medical road we have. The camp is a place where the kids don't have to be embarrassed about the scars on their chest when wearing a bathing suit since every camper (and many of the counselors) have scars on their chests, too.  

This was pajama day and they got to meet a variety of exotic animals who live at the Dodge Nature Center where day camp is held.

Here are all the day campers and the counselors returning from one of their adventures.

On the last day of camp there was a talent show. Paige performed a dance routine in this pink kimono they had on hand, and is presenting one of the counselors with something (I'm not quite sure what).

A few weeks after returning home the training wheels came off the bike and she learned how to ride it by herself. Here is Jim in one of the early solo rides helping her get some momentum. 

We did this in the grassy back yard since we figured falling down there would provide a bit of a softer landing than the driveway. And yes, she wears a helmet when riding on pavement. 

A few weeks after the county fair comes the Wisconsin State Fair. More rides, more food, more entertainment and pretty fantastic people watching. No pony rides (or at least we didn't see any). What they do have is one of Paige's favorite things, the bungee/trampoline ride where the kids get to bounce up and down attached to bungee cords for a few minutes. Paige tried to do a flip with each bounce, and here she is mid-flip.

And they have a giant slide. Refreshing - no lights, no motors, just you and a burlap sack. Here are Paige and Jim zooming down the slide.

Every summer the Herma Heart Center hosts a picnic at the Milwaukee County Zoo for all the 'heart kids' and their families. There's lots of fun things to do include meeting up with The Famous Racing Sausages. If you're not from the Milwaukee area, these guys are local celebrities and have quite the following. They've been at the Herma Heart Center Picnic since we first went in 2002 and they do a little race for the kids.

In the photo below is (left to right): Bratwurst, Paige, Hot Dog, Polish Sausage and Chorizo. Italian Sausage was conspicuously missing. 

All the kids were invited to decorate their own cookies, and there was a huge variety of frosting, icing and sprinkles available. Here is Paige beginning to create her masterpiece.

Whoever said 'less is more' clearly never decorated a cookie.

We still have more summer fun stuff to share (I really meant it when I said it was a busy summer), and will get that updated shortly.

Summer Vacation

Whoops, its  been a month since I last updated the blog. Time flies, as they say.

I had last written about Paige having an MRI to see what, if anything, was going on in her leg and how it might be affecting the growth of her left (shorter) leg. It looks as though the Femoral Artery in her left leg has some irregularities that may be the key to what's going on with the leg. We believe her kidney may have nothing to do with the leg length difference (and the Femoral Artery may instead be the culprit). We hope to have more info in the next few weeks once several more folks take a look at the MRI scan.

Onto the summer. In June, Paige and I spent a leisurely week in New Jersey with my parents. Every now and then I'm asked the witty question "what exit?" when I tell someone I grew up in New Jersey. That, or they look confused and tell me I don't sound like I'm from New Jersey. One time a lady (in upstate New York) actually said something along the lines of "I'm so sorry" when she learned where I was from.

I don't think any other state is the butt of more jokes than poor New Jersey, and the problem has worsened ever since The Sopranos, The Real Housewives of New Jersey and Jersey Shore (whose cast members, by the way, are all from Staten Island) all hit the airwaves.

Mom, I think the idea you suggested years ago is still a good one. If we change the name of the state from New Jersey to Princeton most of the jokes would stop. Maybe Mr. Christie can work on that.

New Jersey is quite beautiful if you can get past Newark Airport and has lots of open land and, believe it or not, lots of wildlife. During our week there, we saw the fellow pictured below several times a day in my parents' backyard. Most of the time he had several deer friends with him, they were probably discussing how to raid the local vegetable gardens in the middle of the night.

We happened to be at my parents house for Father's Day, so Paige and I took Mom and Dad out for dinner. Here are Dad and Paige with the Fathers Day cards we got him.

Somewhere along the line Mom dug out an old hairpiece of hers (we were looking at some old photos and I think I had asked her how she got her hair to look a certain way). It didn't take long for Paige to try it on for size. 

Paige and Gramps spent some time in the backyard. That hammock is deceiving - if you don't lie right in the middle of it, it flips over and dumps you onto the ground. 

After we returned home to WI, we were invited by some friends to spend the day at their lake house. This is the third summer in a row we've visited with them there, and Paige is getting quite accustomed to hanging out on their boat. Our first visit to their lake house, two years ago, was pretty memorable, as I'll show you in just a little bit.

This year she even rode in the tube (pulled by the boat) by herself. 

At the lake on this day were a bunch of adults and two kids: Paige and Ian. Paige is quite fond of Ian, as you can see here. 

Paige is also good friends with Ron, who earned the nickname Captain Ron the summer two years ago when he first showed Paige how to drive the boat. Here he is yet again letting Paige steer the boat. Check out how she's trying to push the throttle as far as it will go.

Getting back to the memorable first visit to the Hudson's lake house two years ago. One thing that sets Paige apart from most kids, apart from her Hypoplastic Left Heart, is the various medication she takes on a daily basis. Two of those are blood thinners. These cause her to bruise easily. Anyone that knows Paige knows she always has a bruise - or two, or three - on an arm and/or leg.

So, in the summer of 2009, Paige was 4, and she was attending daycare when Jim and I were both at work. One afternoon I got a call from daycare telling me she had tripped and fallen onto her forehead. She appeared to be OK but they asked that I come by and take a look for myself. When I arrived 20 minutes later she was out on the playground, holding a bag of ice to her forehead, but she said she felt fine. I took her to her pediatrician to be sure. She confirmed Paige was A-OK.

But oh, those blood thinners.

She hit her head on a Wednesday. By the following Saturday, she looked like this:

Because her blood doesn't clot as easily as most people (due to the blood thinners), the blood from her hitting her head 1) swelled up her forehead (you can't see it here but her forehead was swollen up a good 3/4") and 2) the blood drained down around her eyes causing the puffy raccoon effect.

Saturday was also the party at the Hudson's lake house and we didn't want to miss it. On the way there Paige and I picked up something to drink at the grocery store. For those of you who have not brought a child who looks like they've just gone several rounds with Muhammad Ali to a public place, let me tell you it stops people in their tracks. One fellow jokingly asked what happened to the other guy. I was relieved when nobody called the cops to report a case of obvious chid abuse. 

When we got to the Hudson's party everyone thought Paige was wearing some (really awful) makeup. 

It took over a month for the bruising to disappear. To give you an idea, here we are 2-3 weeks later and the bruises are lighter but still pretty obvious. This photo was taken at a family reunion. My sister in law did her best to apply some foundation to the bruises for the family photos (it sort of worked, but you can still see he bruising). 

We refer to that time as The Summer That Paige Hit Her Head.

Back to 2011. 

One of the highlights of every summer is the annual 4th of July parade in Lincolnshire, IL, where Jim works. All of the firetrucks are in the parade, and all of the firefighters' families ride on the various trucks and engines and throw candy to the crowds.  Here is a photo of some of the vehicles lined up before the parade. It was pretty hot this day and I was very glad to be riding inside the fire engine instead of on top of one.

Every year Paige gets to drive the engine. I never get over the envious looks she gets from the kids lining the parade route (how on earth does she get to drive the fire truck?). Driving the engine is fun - but what's really fun is activating the siren, which is what she's doing here. You know you've done it right when people along the road begin to put their hands over their ears (inside the engine the siren is not loud at all).

We invited our next door neighbors, the Abraham Family, to come with us and ride in the truck. It was way more fun with friends to play with (and share candy with) during the parade. The kids even managed to throw some of the candy to the crowds lining the parade route.

Most years the fire department gives all the firefighters and their families t shirts to commemorate the day. We have some fun t shirts from years past. They have always been a solid color. Until this year. 

My eyes hurt from looking at this picture (I'm sure yours do too - sorry). 

After the parade we all came back to the station to regroup. Here are Paige and Eli enjoying some down time.

When Paige was a year old we had her sit for a photo in front of the firetruck holding Jim's helmet. I thought it would be a fun photo to take as she got older. 

Here is the same kid with the same helmet, 5 years ago.

We board our horse a few miles from our home and try to get out to see him a few times a week, even if we aren't going for a ride. This is what we were doing a few days ago late on a Wednesday afternoon. Here are Paige and Artie enjoying a nuzzle.

Some people find the sounds and smells of the ocean relaxing. Other people go camping to relax (I am not one of those people, as my husband can tell you).   I enjoy hanging out at the barn. The photo below was taken on a quiet afternoon of Paige and our trainer, Kelley.

Back to reality

We've been home from Disney World for a few weeks now and getting back to 'real life' was a bit easier than I had thought. Both Jim and I figured Paige would still be expecting the first class lifestyle when we got home but she settled down into the swing of things without a hitch.

She did ask one night if we were going to have an appetizer before dinner (uh...no) but that was pretty much it.

Shortly after we got home we had a fun visit from a friend of mine, Cindy, who I first met (gulp) 20 years ago when we both worked at Focus Ranch (turn your speakers down before clicking that link). Interestingly, Cindy was from the Chicago area where her dad was a fireman (she now lives in Wyoming on a ranch). Jim's fire district is about 10 miles from where her dad used to work. Small world. 

Anyhow, her kids Lila and Nolan had fun with Paige in our new pool which was terribly cold when they visited. They toughed it out, though, and had lots of fun splashing all around.

Three peas in a pod.

The following week Paige's kindergarten class put on a end of the year show. Here is Paige with two of her classmates and her teacher, Ms. Johnson.

Little story why each kid seems to be saying something in the photo. Last fall, during Fire Safety Week, Jim visited Paige's kindergarten class to show them his bunker gear, air pack and other interesting stuff a fireman wears. He was an instant hit. Later on when he would stop by the classroom to pick up Paige for various doctors appointments, he'd smile and ask the class if this is where the troublemakers are (they'd all crack up and say yes). That soon morphed into all of Paige's classmates calling Jim "troublemaker" every time he stopped by. Which is what happened on this day.

It made for an interesting scene. All the kindergartners lined up on the back wall of the gym (in line, quiet and behaving) when all the parents and grandparents arrived to find their seats for the upcoming show. In come Jim and Gina, and like other parents, we found our kid, smiled and waved. Out of nowhere 20 kindergartners broke into huge grins, pointed at Jim and all yelled "troublemaker!" We got a few curious looks from the other parents.

After the kids sang a few songs for us, there was a PowerPoint presentation, with each kindergartner's photo and what their plans were for the future. Here was Paige's page:

(We have one horse, Zee, who made an appearance earlier in this blog. We used to have a second horse, Bo, but sold him a few months back. Paige is still not too happy that Bo is no longer in the family).

It was funny to read what the kids all had planned. Several of the girls wanted to be kindergarten teachers. A few of the boys (who had a tendency to get into trouble) wanted to be police officers so they could arrest people. There were two or three who were very clear they didn't want to get married. Sounds Dr. Phil could have a field day with that one. 

Last week Paige had an MRI of her legs to compare the arteries in each leg (we think the artery in her left leg might be smaller than the one in her right, possibly the cause of the difference in the length of the right and left legs). I've never had an MRI but I'm told many folks don't like being confined in such a small space for the test. Paige did great, as usual, getting the IV (that sent dye into her bloodstream) and laying very still for the test.  We should be getting a call in the next day or two confirming the results.