I'm finding that the most difficult aspect of XXY is my own personal emotions and thoughts. On one hand, I feel like I need to learn every possible thing there is to learn and shout that knowledge from the roof tops. There's a big part of me that feels as if I've been called to help educate others about this very misunderstood chromosomal variation. When I see other parents that just got the news or watch some program on TV spouting completely incorrect information about XXY or KS, I want to grab a bullhorn and shout out the truth.

"Stay calm! There is no need to panic! Everything will be fine! Listen to me and I'll explain everything."

Then, there's that other part of me - I call it the selfish part - that gets so weary of the research and frustrated by the misinformation. It's times like this that I just want to grab Mikey up and build a brick wall around our home.

As a parent I struggle with finding the right balance. I feel that I have a responsibility to Mikey's future to educate so that his path will be easier. On the other hand, I have a responsibility to protect him from the bullies (kids and adults) that may treat him differently just because his chromosomes are different.

But hey . . . how many of us really know what our chromosomal make up is? Right? But I digress . . .

I guess when it comes right down to it, Mikey hasn't been changed by XXY, but I have. I certainly have a lot more empathy for the situations that others are going through, and I thank God every day that my biggest problem is an extra X here and there.

Hmmm . . . sometimes when I journal I can usually come to some sort of resolution, but not today. I still don't know what the right thing to do is. And, maybe I'm not supposed to know that right now.

I'm going to go play with my son.

Surgery #1 is under our belt and we are well on our way to recovery. This surgery consisted of the following:

1. Straightened the penis

2. Opened (butterflied) the penis in preparation for moving the urethra

3. Peformed a partial circumcision

4. Started attaching the scrotum

The second surgery will be sometime in September and will finish up the work on the scrotum, complete the circumcision, move the urethra to the tip and close the penis. The doctor did not find his right testical this time around, so he'll be looking for that again in the next surgery. We pray that he finds it during the second surgery so that we can avoid a third. If he does find it, then it will be moved into position also.

The surgery took just under 3 hours and went very well. We haven't seen any of the "work" yet because everything is bandaged up and then covered with a dressing. Mikey is wearing two diapers right now. The internal one is for the BMs and the external one is where the cathedar drains. We are having to change the inner diaper pretty frequently because there is blood. We knew the blood was to be expected, but it's still scary seeing your child's blood. Also, changing diapers has now become a team sport for us, as one person has to hold onto Mikey's hands to ensure he doesn't start exploring.

He did have two BMs last night and that was an event and a half. It's very difficult to clean when you're trying to be super careful to not hurt or move anything around. In fact, Mikey got pretty upset when we cleaned up the first one so we had to stop. Since we can't bathe Mikey for at least a week, we were joking that we would have one stinky kid by next Thursday. We ended up calling the doc because some of the poo got up under the dressing. We were told not to worry and that it happens all the time. We're just supposed to clean up what we can and to ensure we do not remove the dressing. The doc said that what we are seeing is a lot of the bandages too, and not skin. So, that explains why it wasn't cleaning up easily.

I know - gross - too much info. But, when we have to go through this again in six months, it will help me to have this as a reference. And, if anyone else out there has to go through hypospadias repair, they'll know this is to be expected.

All in all the surgery was a success and Mikey is doing great. Every now and then he does something that causes a twinge of pain, but he can be comforted pretty quickly. He's back to his giggling, gurggling, laughing little self, so we feel we're over the worst of it. He is a real PITA when it comes to taking his meds, though. I've taken to putting drops of it on his cereal so I can fake him out - he will no longer open his mouth for the dropper!

We go back to the doctor on Thursday to have the dressing and bandages removed. At that point we'll get our first look at his handiwork. We've been told to expect a lot of redness and swelling that will take about three months to resolve. After three months, we go back in to check how everything is healing and schedule the next surgery.

I hate that I have to put my child through another surgery, but I take comfort in the fact that I know he won't remember a minute of it. It also helps that I've met another monther that has been through this with her son. Having her to talk to has been a Godsend.

Thank you for all of your thoughts and prayers. We certainly felt them and truly feel that God has blocked Mikey's pain.

I want to update everyone on my last post. . .

I did get in touch with Mikey's endo regarding Jake and possible family history. To say the least, he was intrigued. While I never got to speak with him personally, we exchanged several voice mails and faxes over the last couple of weeks and he agreed that it would be a good idea to get Jake karyotpyed. I am expecting the paperwork to come in the mail any day now. The good news is that I will be able to take Jake directly to a lab and bypass all the typical office visits.

I had to sit down and have the discussion with Jake. It's kind of a hard thing to explain to a 9-year-old. Yes, we've told him everything about Mikey, but we kept it in more basic terms. I found myself explaining testosterone, hormone levels, puberty, DNA, chromosomes, genetics - you name it. It was a very long, complex discussion. Jake never ceases to amaze me with his intelligence level. He easily grasped the concepts and now has a pretty good working knowledge of the topics. (Now I only hope I don't get some sort of note from his teacher - LOL!)

When I told Jake that we want to have him tested to see what his karyotype is, his only concern was "will it hurt." I didn't lie. I never lie to my kids. I told him that, yes, it will hurt but not as much as a shot. Since he recently had a flu shot, he had a point of reference. Honestly he's more concerned about getting the blood drawn than possibly having a chromosomal disorder. In fact, when I told him about some of the characteristics of XXY boys (ADHD tendencies, difficulty with reading comprehension, difficulty fitting in with peers, etc.) he immediately said he wanted to be tested. What a trooper.

So, I'm now waiting on the paperwork to arrive and then we'll get the blood work done. After that it is a very long wait to see what the results are - usually three months. (Mikey's was seriously rushed while he was at Children's. It's unheard of to get a karyotype in two days). Once again, we play the waiting game. I'm getting pretty good at it though.

So, does XXY run in families?

The current medical stance is that it does not. I've researched this for MONTHS. Why, you ask? Because I believe my oldest son exhibits some of the traits of XXY. Let me explain.

For months I have been a member of a listserve with other XXY parents. I subscribe to all age group discussions with the thought that I will be more prepared for Michael's future. When I read posts from the parents of adolescents I find that many of the behaviors they describe sound just like Jacob. I cannot tell you how many times I've read a post that made me think, "That sounds just like Jake." Or, when I read some of the information for the toddler-aged group, I'm reminded of Jacob's todlerhood.

This past weekend I leared that I have an Aunt that gave birth to a child with ambigous genitalia. The baby's gender was never identified as s/he died shortly after birth due to other complications.

So, you can imagine where my mind went . . .

I put a call out to the other XXY parents. Basically, I was challenging this idea that XXY does not run if families. For the first time I heard that, while it is extremely rare, it is not impossible.

Not impossible.

Over the next few days I heard from other parties . . . in one case a man and his cousin have XXY. . . in another case a mom has an XXY and an XYY son.

Clearly not impossible.

I sent a letter to Michael's endo asking to have Jacob tested. I know Jacob is going to hate having his blood drawn. I can't imagine how much this will cost me in terms of bribery. But, I need to know.

Okay, so that last post was awfully serious. But, I have to say it felt good to put it on paper. There's something about writing stuff down that makes it easier to analyze.

The bottom line is this - I don't have the answers and I don't know what the future holds. I do know that, whatever Michael needs in the future, I will give it to him or get it for him.

I also know that this entire experience has changed me. I no longer see things as black and white; right and wrong. I now see this entire spectrum of color that I had never noticed before. And you know what? It's beautiful.

I've been debating on whether or not to post some of my thoughts as we move through Michael's journey with XXY. My original goal was to make this site about Michael so he would be better able to understand himself. As I think about that original goal, I have to wonder if my sharing the thoughts, discussions, etc. that Vince and I have would help Mikey. After a lot of soul-searching, I believe it will.

The other thing I realized is that I get the most help from other XXY parents that are willing to lay it all on the line and share their thoughts, trials and tribulations. If I can help one other parent the way I've been helped, then I will die knowing I did something really good in this world.

So, in that spirt, I've decided to share a bit more about mine and Vince's struggle with XXY. I'll start with the most difficult topic first - homosexuality. There I said it.

Some background . . . 

I am a member of a family with strong morals based on Biblical principals. In fact, I have several religious leaders in my family. Growing up in the church, I could recite Bible versus and sing hymns more easily that I could recite a nursery rhyme. The reason I share this is to let you know that I was rasied to believe two things in regards to homosexuality: 1. It's a choice. 2. It's a sin.

I will tackle #2 first since that is the one that is likely to inflame most. Even though I was raised with strong opinions on the subject, I was also raised to not judge others. I am a true believer that we are all sinners and are in no position to judge any person or any person's actions. I believe you should "clean up your own house" before trying to clean up others. So, that is why I have no issue with people that practice the homosexual lifestyle. In fact, I have a few really good homosexual friends that have truly enriched my life. I hate to think of what I would have missed had I been narrow-minded enough to shun those individuals.

Now, on to #1 - the whole choice thing.

For the longest time I found it absolutely absurd that someone could feel they were "born that way." I mean, the Bible clearly states that there is male and female. But with the birth of Mikey, I have to wonder.

Mikey is a mosiac XX/XXY. That means that, at a chromosome level, he is part female and part male. While the physical is all male, his DNA indicates a mixture.

If our DNA is the building blocks of everything, then does it stand to reason that my son may be "born that way?" Sure, he may well grow up and never feel any homosexual tendencies. He may grow up and identify 100% male. I know that, as his parent, I can be a big influcence in that area. But, since there exists a female/male signature on his DNA, isn't it possible that biology will override?

I certainly don't have the answers, and I suspect I never will. But, in addition to worrying about his future, this whole XX/XXY thing is coloring all of the decisions we make in regards to seeking treatment. For example, he will most likely need T treatments to help him reach puberty. While that is a ways off, I am already wondering about dosage. It's one thing to treat a normal XY boy with T to put him within "normal levels," but what is a normal level for an XX/XXY boy? What if they give him too much?

I also questioned the upcoming surgeries for the longest time. What if we were fixing something that shouldn't be fixed? What ultimately got me on board with the procedures was knowing that, the way he is now, he will NOT be able to participate in sexual activity later in life. Also, I know that it is difficult to be considered different from your peers. Life is hard enough, but when you have a physical difference from your friends, it makes it even harder.

I think I may be rambling, but I feel this flood of thoughts and emotions rising to the surface. I have kept so much of this to myself for so long . . .

I guess my entire point is this: I worry that one day Mikey will come back to us and say, "Why did you do this to me?" As a parent, I want to make the best decisions for my children, and I want them to be the RIGHT decisions. Unfortunately, there is no crystal ball.

I pray a lot. I read a lot. And I pray some more.

Mikey had his 4-month check up earlier this week. Everything is great and we are on target development-wise. The doctor feels like he's still on the small size (25% head size, 25% weight and 50% height) but we think he's fine considering how long and skinny Vince and Jake are. He's just a typical Sharpin!

He did have to get some immunizations. OUCH! He still has some bruising three days later. The nurses are always surprised at how well he takes his shots. He cries for a few seconds and then is over it. I guess if you've been through what he has, a little prick in the legs is nothing.

Our next visit is at 6 months and will be just a few days before his first surgery.

Oh, and we get to start cereal next month. WOO HOO! Let the mess begin!

I know, I know . . . I'm way behind on journaling. In my defense, I've been trying to take my own advice and just enjoy my son. Sometimes all the researching and reading and discussing takes its toll on me. It's all good information, but just like anything, too much can make your head spin.

One of the major items I wanted to provide an update on is Mikey's last urologist visit. We met with Dr. Wilcox last week. (I was dreading this appointment so much that I made myself sick. I'm not sure why I was so nervous - I knew nothing was going to be done. Still, I guess I was worried they would find another issue that needed to be delt with). Here are the highlights.

1. It appears that Mikey does not have an inguinal hernia. Instead he has a hydrocele, which is fluid around the testical. Many times the hydrocele will go away on its own, but the doc plans to take care of it during one of Mikey's surgeries if that doesn't happen. This is GOOD NEWS!

2. Mikey's left testical is in the correct position. WOO HOO!

3. The right testical remains a mystery. The doc will feel it on one visit, then won't be able to find it on the next. At this visit the little booger was hiding. If you recall, this is the underdeveloped testical that needs a biopsy.

4. Mikey's scrotum is on top of his penis. This is something Vince had pointed out to me, but I guess I refused to see it. During one of the surgeries this will be corrected.

5. It looks like we will have 2-3 surgeries. The first surery will include straightening the penis and doing the prep work to move his urethra to the tip. If everything goes well, the doc may go ahead and move the tube to the tip and work on moving the scrotum. The second surgery will consist of moving the tube to the tip (if not done in the first surgery), moving the scrotum to the correct position (if not done in the first surgery), and performing the circumcision. If a lot of the items were done in the first surgery, then the doc may move the right testical down. If the right testical cannot be moved at that time, there may be a third surgery.

The first surgery is scheduled for March 20th. The second will be about six months after that.

I think the thing I'm most worried about is not being able to feed him after midnight the night before. I know, I know . . .that's such a small thing to worry about. But, I know he will think we're being mean parents by not giving him any food!

We have his 4-month check up later this month. Hopefully we'll get the green light to start feeding him cereal. It seems like the formula is just not satisfying him any more. (Though you can't tell that by looking at him - he's a chub!)