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.

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.

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!

We went to the doc today for our 6 week follow-up visit. Everything looks really good. The doctor is pleased with how everything has healed - the skin graft looks healthy and the penis is straight. We have another appointment in February to re-evaluate and decide if we need another round of testosterone. We did set the next surgery date - April 3rd. The doc is going to decide at our February visit if we will do the 2nd stage hypospadias repair or deal with the testical. I'm hoping we finish up with the hypospadias repair. The reason why is, if there is complications from the hypospadias repair, (very common),  that requires us to go back in. If we had to do that, we do the repair and fix the testical at the same time. So, that would keep us down to two more sugeries.

Complex, huh?

Mikey did very well at the visit. Normally he screams bloody murder any time the doctors examine him. In fact, after this last surgery, it took a while for Mikey to get where he wouldn't cry when we changed his diaper. Now, he just holds his breath and stares hard at you until the diaper is closed back up. Can't really blame him, though.

On a funny note, Mikey made friends with another 15-month-old boy while in the waiting room. They two of them had a blast running up and down the hallway screaming. The other boy's dad and I were chasing them both, but then realized we had to work together so WE wouldn't be the ones needing an afternoon nap. He stood on one end of the hall and I on the other. The boys just ran back and forth between us.

After about 10 minutes of that, Mikey decided he wanted Cheerios. I pulled them out of my bag and suddenly I had about six toddlers surrounding me. I felt like the lady with a bag of bread at a duck pond! All of the kids were shoving the Cheerios in their mouths. Mikey didn't care for that, so he was grabbing them and sticking them in his pockets. Looks like I have two only children.

Sigh.

I thought it would be a good idea to give another update since my last post was not so positive.

Now that we have a few weeks behind us, things are significantly better. It seems like everything begins taking a turn for the better as soon as the cathedar is removed. I just have to learn to survive that first week.

Everything seems to be healing nicely. The swelling in his mouth is gone as well, so he's almost back to normal activity. After a few more weeks we can resume his favorite game of "ride a little horsey."

We go to the doctor in about 4 more weeks so he can check on everything. At that point we'll schedule the next surgery.

I just got home from the hospital (10:00 p.m.). To say it has been a long day would be the world's biggest understatement.

We arrived at the hospital at noon and surgery began at 2:15. Prior to the surgery starting, Mikey was given some medication to make him sleepy. He was a sight to see - very loopy, eyes rolling, goofy grins, etc. He was fighting sleep so hard. He kept trying to play with us to stay awake. Finally, it was time to take him to the operating room. Vince carried him down the hall. The entire time Mikey was saying "weeeeeeeee." I guess with the meds he thought we were going really fast or somehting. It was so cute.

We sat him on the gurney and he couldn't even sit up. We laid him down and he was immediately fascinated with the nurse's bonnet. The only thing that grabbed his attention after that was the overhead lights. Vince, Mom and I watched him as he was wheeled into the operating room. 2:15.

After grabbing a bite to eat, the three of us started a very long wait in the waiting room. During that time we talked about how grateful that this would be the last of this. Sure, there could be complications that would result in another surgery, but we were faithful that, after today, the worst would be behind us.

At 5:30 we were called into the consultation room. It turns out that the first surgery was not a complete success. Or, maybe it was, but Mikey didn't heal correctly - we're not sure. The long and short of it is that Mikey's penis was crooked. This meant that the stage 2 hypospadias repair could not be done. Instead, Mikey's doctor had to re-do the first surgery. Since there wasn't any extra tissue to work with, they had to remove it from the inside of his left cheek. We get to try the stage 2 repair in another six months. That also means the surgery for his right testical is delayed another six months after that. Another year of this.

Because Mikey had tissue removed from his mouth, he had to be admitted to the hospital overnight. As I write this, my little guy is there now. Vince is with him since he has a stronger stomatch for these things.

When I held Mikey tonight it was obvious he was in pain - more from his mouth than anything. He also has a ton of blood pouring out of his mouth. I tell you, it was a tough thing to experience knowing there was nothing I could do but hold him and sing to him.

I'm so frustrated. I try to take this whole KS thing in stride and learn from it. I also try to keep perspective as things could be so much worse. When I see all those other parents in the waiting room waiting on their child to come out of much more serious surgeries, I'm grateful for the hand we've been dealt. But sometimes, like today, the entire thing just pisses me off. I mean, why does it have to be my son? Why does any of this happen to any children for that matter? Hospitals should be for having children or for sick adults. It's so hard to see innocent children going through these things. It's just not fair.

I know that life isn't fair. But it's hard to just shrug it off when it's your kid. If I could trade places with Mikey, I'd do it in a second.

Sorry this isn't more positive. I'm struggling with all of this right now and my emotions are raw. Maybe after a good night's sleep I can see the glass half full again. Right now I'm just trying to get throught the night knowing my little guy is not in the next room.

Wow. I've really been remiss in journaling. Those of you have little ones yourself probably understand. There has been so much going on that this will be a long post. So grab some coffee and have a seat. . .

MEDICAL: SURGERY POSTPONED

As mentioned in a prior post, Mikey was scheduled to have surgery the first of September. About a week before surgery we received a call stating our urologist had moved to Denver and Mikey was getting a new doctor. You can imagine how shocked we were. (We were so very pleased with our urologist, and those of you in Denver are lucky to have him.) After an initial freak-out phase, we prayed about it and realized the new urologist must have been placed in our path for a reason, so we received some much needed peace.

We made an appointment to meet the doctor so surgery day wouldn't be the first time for all of us. We went in on a Monday with the expection that surgery would be on Wednesday. During the examination the doctor felt that Mikey's penis was not big enough for this next surgery. (As a reminder, this is where the new uthrea is being built; the current opening is being closed; the new opening is being formed; the penis is being closed along the shaft - it's currently butterflied; the circumcism is being completed; and the scrotum repair is being completed.)

We had a choice of going forward with the surgery and its increased risk of everything not working properly (there would be the potential for Mikey to not urinate out of the tip, but out of both openings; as well as the possitility of everything opening back up), or waiting. My first thought was that I didn't want to wait because I really don't want Mikey to remember ANY of this when he's older, but I also didn't want to subject him to any more surgery than necessary. We talked for a few minutes and the doctor recommended testosterone (T) treatments.

I'll digress a moment and mention that I had been reading where some endos were recommending T treatment for XXY boys. It's a short cycle of about three shots of a very low dosage. Basically, it's enough to tell the penis to grow. It's a bit controversial, but seems to be gaining some popularity. Usually this is done when the boy is very young, so I had assumed our "window" had passed and never brought it up with our endo.

We agreed to the T treatment and set a new surgery date of October 22.

MEDICAL: THE T ADVENTURE

We received our T Rx and left the doctor's office to get it filled. The first pharmacy couldn't read the Rx and had to call the doctor to verify. She hand wrote her notes all over the Rx. After a few minutes, she came back and stated she didn't have the correct T, so she sent us up the street.

At the second pharmacy they read all the notes from the first pharmacist, had questions, and called her. Second pharmacist doesn't have the right stuff. I ask her to call around so I can stop the wild goose chase. She does and we find another pharmacy up the street that has what we need.

At this point I'm glad to live in a big city.

Get to the third place. I was there FOREVER. I promise you it took two hours to get the Rx filled . . . and I was assisted the moment I walked in the door. I was wondering if they were having to make it or slowly extract if from another male while I waited.

I get the Rx and read the instructions. They don't seem correct based on the original Rx. She calls the doc and they speak at length. I am assured I have the right stuff. I pay (not covered by insurance, BTW) and we head back to the doctor's office for the injection.

My goodness. That is the BIGGEST needle I have ever seen in my life. And it goes right into the thigh muscle. You can imagine that Mikey didn't care much for the shot. :)

We do the three T treatments over the course of the next month, with the last on 10/6. Now, you are probably wondering if they worked. . .

Um . . . .

Let me put it this way . . . I could totally sell what's left over of his T on the street. I could put all of those "male enhancement" companies out of business - and they'd be crying like a girl.

So, yeah! They work. What's really funny about it is that he gets the shot on a Monday and then nothing happens for a few days. Then on Thursday - TA DA!

On 10/6 we went in for the final injection and inspection. Everything looks good and we are scheduled for the afternoon of 10/22/2008.

Oh . . and before I forget . . I was RIGHT! The dosage on the T Rx was wrong! Fortunately the nurses caught it and gave him the correct amounts. I got a call from the pharmacy letting me know it was incorrect AFTER he had two doses. Nice, huh?

DEVELOPMENT: 1 YEAR OLD

On September 22 Mikey turned one year old. There are still moments when I'm stunned by the fact I have another baby, much less a one-year-old. Because this date was going to be shortly after the surgery, we didn't make any big plans for his birthday. We were scrambling to come up with something when my grandfather passed. So, ultimately Mikey's b-day was very low-key, but he still had fun. We let him feed himself cake. It was a funny sight. I don't think he actually ate much as he was much more interested in squeezing the frosting between his fingers.

We had our one-year check-up yesterday. Mikey is on the small side - 5% head, 5% weight, 10% height - but the doctor is not concerned. He's on schedule for most of his milestones and ahead on a few others, so no worries there, either. He received four more shots (poor baby) and a clean bill of health.

SUMMARY

So, I think that gets everyone back up to speed - LOL! We're getting ready for the next surgery, both mentally and physically. On one hand I'm ready to get it over, but on the other hand I'm dreading it. I know everything will be fine because we have witnessed miracles for Mikey already. Please pray for Mikey's swift recovery and that he will have no pain. Please pray for Mikey's doctors that they will be sharp of mind and skillful with hand. And please pray for Vincent and I that we will have wisdom to comfort our son and peace about the entire procedure.

I'll try my best to be more timely in my future posts. :)

With friendship,

Care

We went to the Urologist last week to schedule the next surgery. Everything has healed properly and looks wonderful. The doctor is very pleased.

Mikey's next surgery is scheduled for September 4th. Based on how well the first surgery went, we're anxious to get this one behind us as well. And, we tried to schedule it so that Mikey would recover in time for his first birthday.

Mikey continues to develop on schedule or slightly ahead. He's mastered the MMM and BBBB sounds and has moved on to the DDD sounds. He now says Daddy all the time, which puts a big smile on Vince's face. (He's been saying "Mumwa" for a while now.) He has recently started clapping, which is so cute. And, he's pulling up to a standing position constantly. We think he's going to be like Jake was and go straight to walking.

He's a great eater, unlike his big brother - LOL! He LOVES his veggies. I'm pretty excited about that because good eating habits will help him later in life. (And, it sure makes it easier on Mom and Dad!)

Other than that, there's not much new to report. We continue to thank God every day for our precious boys.