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A Long Break and An Overdue Update
posted on 01/07/2012

1/7/2012

Wow. It has been such a long time since I've posted on this blog. The truth is I sort of forgot about it. And I mean that in the most positive sense possible.

You see, since we've gotten past the last survery (2010) and Mikey turned 4, everything has been blissfully normal.

Normal.

What a wonderful word.

Mikey's development is on track and this kid is as smart as a whip. He will watch us do something once and then he does it. His language skills are through the roof. He's deveoped his Dad's pallette and eats things most adults won't touch. He's healthy and happy. The stress/worry/research/surgery/more worry/more stress/more research cycle has been broken for me. Yes, I still keep up with the research, but now it's more proactive than reactive and on my timescale. It's a great place to be.

We have our follow-up visit with our urologist on the 16th. We were supposed to go last August, but the doctor wants to see him pee to ensure the stream is straight and strong. Mikey was a bit resistant to potty training, so we needed the extra time to ensure he could handle peeing on command. I can attest that his stream is straight and strong (and goes on FOREVER - he can out-pee us all), but it will be nice to get the doc's stamp of approval.

Overall Mikey is still on the smaller side when compared to other kids his age (not yet 35 pounds), but I think that is more a product of his Dad's genes than his condition. (Vince is 122 pounds fully-clothed with steel-toe boots and sopping wet.) Jake was the same way until around 6th grade. During the summer he grew nearly 7 inches. Now he's in 8th grade and taller than I am. So, all that to say Mikey's weight and height do not concern me.

I've uploaded some new pics so you can see for yourself his wonderful progress.

In friendship,

Care'



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Mikey is 3!
posted on 09/18/2010

Mikey turns three on the 22nd. It is hard to believe that much time has flown by, and as I look back most of it is a blur. It seems like only yesterday I gave birth to my little girl, only to find out two days later that "she" was a "he." Somehow when I held my little boy in my arms after the KS diagnosis it just felt right.

It's hard to imagine that our now energetic, intelligent, curious and handsome little guy is the same tiny little baby we were told would have developmental delays. Sure, we've had more than our fair share of surgeries, but now that all of them are past us, it's easy to forget all the late nights of worry. Now we just worry about the mess he's making when we turn away for a moment.

I know the future will hold more obstacles to overcome as we begin T treatments, but for now, it's wonderful being here just enjoying our son.

With friendship,

Care' 



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We're Done!
posted on 02/20/2010

Mikey's final surgery was yesterday! I cannot tell you how thrilled we are to have this behind us. Yes, we still have the recovery road ahead for this one, but just knowing this is IT is such a huge relief.

During the procedure yesterday the doctor found a gonad on Mikey's right side. It was mostly ovarian material with a wee bit of testical material. That, combined with really short blood vessels meant it made more sense to just remove it than to try and bring it into position. There was also a tiny sliver of cells nearby that may have been uterine, so those were removed as well.

What this all means is that our diagnosis has changed; so I'm now researching to try and understand the new piece of the puzzle. Based on the very brief digging I've done, I wonder if we actually have two conditions instead of one, because Mikey seems to have characteristics of both. I'm hesitant to post much more right now since I've only just begun my research. One thing I learned when I started my KS research is that there is a lot more "bad" informatiion out there than "good", so I'll have to dig deep.

Be that as it may, at the end of the day we have a wonderful, beautiful, happy child that will now be able to move past all of these surgeries.



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Surgery Tomorrow
posted on 02/18/2010

Mikey's next, and hopefully last, surgery is scheduled for tomorrow. In this surgery we will be dealing with his right testical. FIrst, they will determine if there is even one there and, if there is, it will be removed, examined, repaired (if needed) and put into proper position.

Despite knowing this surgery should be easier than the ones in the past, I still feel just as anxious. I guess it never does get any easier.

Please send prayers our way for Mikey and his doctors. I'll update the site tomorrow after we are done.

Care'



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Catch Up
posted on 02/09/2010

Wow. I have been very remiss in blogging lately. I guess the good news is that things are so normal, we rarely think about Mikey's condition anymore. We are so focused on our noisy, curious, energetic two-year-old that I tend to forget that anything is amiss. However, I realize that there are parents out there that are still trying to figure all of this out, and I apologize for being so absent. So, here's a big catch up post.

Development - We remain on target or ahead of schedule on all developmental milestones. Mikey is talking up a storm and it seems as if he picks up 2-3 new words each day. His favorite phrase is "hurt me" and we hear it as soon as Jake gets within 10 feet of him. LOL!

Recent Surgery - Our last surgery was October 30th. During this surgery Mikey's left testical was brought into position and the fissure on the bottom of his penis was closed. Fissures - or openings - are very common for the surgery that Mikey had back in April. Fortunately, this surgery went really smoothly and Mikey seemed to rebound quickly. We did find his left testical was an ovateste, so the doctor decided to hold off on any work on the right testical. The ovarian tissue was removed and the testical was put into the proper position. Looking at Mikey now, you'd never know he wasn't born perfectly normal in that area. It is truely amazing what they can do.

Upcoming Surgery - Our next surgery is just a few days away on February 19th. In this surgery they will be inserting a laproscope to see if there is a testical on his right side. If you recall, there is some mystery surrounding that testical. We have had only one doctor say he felt something, and he said it felt small. Since then no one else has been able to feel anything, so it is quite possible there is nothing there. If that turns out to be the case, Mikey will have one small incision near his belly button. If they do find a testical, it will be brought into the proper position. The good things about this surgery are (1) no cathedar and (2) it SHOULD be our last!

Vince and I were talking the other morning about how strange it will be to no longer think about the next surgery. For the past two years our lives have been completely arranged around medical procedures. In fact, I haven't taken a real vacation in a while as I always have to schedule around doctor visits and surgeries. We are really looking forward to that little bit of normalcy.

More later. I have a noisy 2-year-old saying something "hurts me" that I need to check out. :)



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Surgery Update
posted on 04/09/2009

The surgery is now a few days behind us and things are - almost - back to normal. When we arrived on Friday and chatted with the doctor, we were a little surprised that they had the testicals & hernia on the list. We just didn't think that was an option at all. When the doc left, he said that he'd see us sometime that night. We settled in for the long haul, so you can imagine our surprise when they came out less than an hour-and-a-half later.

It turned out that they only dealt with the penis - which was basically laying in the new tube and closing it back up. The testicals and hernia will wait for another day. We're okay with that. After all, just ensuring the new tube works properly is plenty for right now. Besides, I do still have some hope that the testicals will descend on their own.

The catheder was to remain in place until next Monday, but Mikey decided he had enough and pulled it out last night. We had to watch him closely to ensure he was able to urinate, and he seems okay on that front. We don't know yet if he's peeing from the tip of his penis or the base, because he's been filling up the diapers like crazy.  So, stay tuned for news there.

He's a little fussy (okay, a LOT fussy) but other than that he seems back to his normal activity. He's running around here in such a way that you'd never know he just had surgery. We are still giving him pain medication (motrin) and he's still on an antiobiotic. Our next visit is on Monday, so I'll probably have more news then.

Thanks to everyone for the kind words and prayers. They help more than you will ever realize.

 



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Another Surgery Today
posted on 04/03/2009

Today will be Mikey's third surgery. For some reason, I'm much clamer for this one than I've been in the past. I don't know why . . . maybe it's because this should be the last major one. Of course, all surgery is major, but the next one should be dealing with an undescended testical only, so that should be a piece of cake compared to what we've been through and are about to go through.

In today's surgery the doctor will move the urethra to its proper positioin and close up his penis (currently butterflied). In addition, he'll repair what we think is a hernia. I'm hoping there will be no skin grafts this time, but it's certainly a possibility. If that is done, then it will be an overnight stay (or two) instead of day surgery. We packed a suitcase for Vince just in case. We're starting to get superstiticious on that front - every time we pack a bag there's no overnight stay, but if we don't pack one there is. ;)

The good news is that the procedure will be done at the Children's Legacy location in Plano, which is MUCH closer to our house.

So, if you're reading this today, please send well wishes and prayers our way. Send them towards Mikey and for his doctors to have sharp minds and skilled hands.

I'll post later to let you know how everything went.



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Found It!
posted on 01/22/2009

So, my little guy likes to hide things. It's so bad, that if you see him grab your keys or the remote, you had better follow him or you can kiss that item good-bye. For weeks now I've been missing a pair of shoes. Hubby has been missing his XBOX Gears game - just the CD, not the box - which means (a) hubby has been grumpy and (b) it has been difficult to find. The only one NOT missing anything is Jake, but he pretty much locks his little brother out of his room.

Well, today I decided to clean the house. Okay, that's not quite accurate. I HAD to clean the house because our insurance agent is coming over tomorrow. Because I've put it off a while, it needed some serious attention. (I'm more of a keep-things-straight person than a dust-the-back-of-the-television person, so I had some work to do).

Here's what I found over the course of the last few hours:

-V's missing XBOX game
-A 1/4 full bottle for which we've been searching 3+ days (um, yeah, it stunk BAD!)
-V's tape measure
-8 binder clips
-2 DVDs
-5 socks
-8 partially eaten crackers
-1 pair of Jake's underwear
-2 Hot Wheels
-a piece of a transformer
-1 cookie sheet
-2 jars of baby food
-$.65 in change
-My calculator
-Miscellaneous pens and pencils
-1 pair shoes

We still haven't located:

-My WW Points calculator
-The remote to Jake's television
-My glasses
-Elmo

So, if you come to my house beware of (a) dust and (b) the little concealer.

With friendship!



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