Thursday

Does anyone have any they can give me? I'm willing to pay - top dollar!

Michael does not sleep for more than a three-hour stretch at a time. I know this is normal, but it is killing me. I feel like my brain is melting - no wait . . . it already has melted.

My sister is here and I know she is bored to death, but I just don't have the energy to do anything. Heck, I don't even have the brain capacity to hold a conversation right now. I know I'm supposed to be this super happy, giddy mommy, but honestly, I'm just tired.

Yes, I have help during the night, but I still wake when he wakes. I haven't had uninterruped sleep since I was about 6 months pregnant. You would think I'd be use to it, but I'm not. To make matters worse, lack of sleep or messed up sleep patterns trigger my migraines. I had one pretty much all day yesterday.

I know, I know, this is supposed to be a site about Michael and KS. And it will be - just as soon as I can get my head on straight again.

Tuesday

At least I THINK it's Tuesday. My days are all blurring together right now.

I haven't posted much lately because my little guy has been eating constantly. It's like he went from 3 ounces to 5 ounces overnight, and he still wants to suck some more. You can definately see that his cheeks, legs and arms have beefed up. My little skinny guy from the NICU is only a memory now.

You may be wondering how I know he went from 3 to 5 ounces if I'm breastfeeding. Well, I'm no longer breastfeeding. The pain was excrutiating and it was getting to the point where I was dreading any time he was awake. In fact, pumping started to feel pleasant compared to BFing. Given a choice between putting my nipple in his mouth or a bear trap, I would have gleefully selected the bear trap.

I felt extremely guilty about deciding to stop - in fact I still do a bit. But, I don't want to dread the time with my son. I want to enjoy it. After all, it's only a few weeks and it's back to work and I'll have to turn his care over to someone else. :( Vince and I tried to make the budget work, but it just won't for right now. But, we think outside care will be a temporary solution - maybe only through the end of February. So, if we start the last week of November, that's only a little over three months.

Now I'm focused on getting my girls back to their previous state. I'm on day three of quitting cold turkey. I had tried to pump some in the last few days, but was getting nothing and was still engorged, so I figured I just needed to ride it out. I won't lie - this hurts too. But I have to believe this will soon pass. In the meantime I'm using the cabbage treatment. It's very strange walking around with lunch in your bra, but it seems to help.

Saturday,

It's official.

Michael is spoiled rotten.

He has not been put down in the last 24 hours. He either sleeps on me, Vince or my sister. The minute you put him in his bassinet, his eyes pop open with an accusatory look - "what do you think you're doing putting me down?" None of us can resist those sweet, blue eyes.

I've spent a lot of time today reading and researching. I've learned an important distinction.

Basically, there is a difference between XXY and Klinefelter's Syndrome. Just because you are XXY does not mean you will have Klinefelter's Syndrome. Yes, one is a prerequisite for the other, but KS is not an automatic response to the XXY condition.

I've read hundreds of letters and posts from other parents of XXY children and from many XXY adults. Their insight has been invaluable and has given me much hope. I am reading and learning as much as I can so that I can be viligent with his treatment, if any is needed.

Sometimes it gets overwhelming. There are so many things to be on the lookout for and you just don't know what is going to happen. That's when I have to stop and remind myself that I have no roadmap for Jake either. We just assume everything is going to be A-OK with him and deal with anything that comes up as it comes up.

So, I am now trying to find that balance between being informed and being relaxed. I do know that the more I read, the more calm I feel about Michael's future.

And besides, I have it on pretty good authority that everything will be okay. So I need to just chill out . . . :)

Friday,

So, the last couple of days have been about quality time with the four of us - you know, me, Michael, my right breast and my left breast. We've been practicing latching on properly. On the up side, Michael is taking to the breast. We've only had two bottles in the last 24 hours, and that's only because I needed a break. On the down side, it's tough feeling like a 24-hour diner. Oh, and, in case you didn't catch it from the title of this post - IT HURTS!

Michale is thriving. His cheeks and legs are filling out and he's developed a bit of a gut, so he's starting to look less fragile. He also feels heavier. I have to say that my only complaint is that he only sleeps for 2.5 hour stretches. I'm exhausted! After next week I'm scheduled to go back to work part-time. I'll be working from home, but I'm worried if I'll be able to get anything gone. I may have to work after Vince gets home. I do see about a 3 hour stretch in the morning where Michael sleeps, so that may be some prime work time as well.

My sister is in town to help me through next week. I'm so excited she is here! I tell ya, I do not know what we would have done without our family in the last few weeks. They have been a God send.

Wednesday

Vince took the day off today to take care of Michael while I attended my Granny's funeral. I think Vince enjoyed it . . . he's dropping hints about being a stay-at-home dad! LOL!

Tuesday

We had our follow up endo visit this morning. Everything looks great! Here are some bullet points on what we found out:

-Out of the 20 cells karyotyped, 11 were xxy and 9 were xx. Since this can vary depending on where the cells are taken, he is classified as 50% xx and 50% xxy. To be honest, I'm not entirely sure what that means, but based on the research I've done so far it's important for me to know.

-The Y in his XXY is fully-formed. This is great news! 

-The doctors were able to feel the right testical today! The urologist did not feel it last week, so once again, God is working miracles in our lives. It's still pretty small, but I have to belive it's growing or moving into the proper position if they could feel it.

-Michael is producing his own testestorone. The level is around 42-43, which is low, but at least he is producing his own. We'll have to watch him as he enters purberty and may need to supplement, but I'm thrilled to see he can produce some himself.

-Michael is also producing FSH/LH. This is good news in that it tells us where his problem is. You see, it's a chain reaction to produce testestorone. The brain has to send off a signal which then goes through several steps in his little body. Basically, to use programming terms, the brain has to send a request to the testes to produce testestorone. If there is a response, the FSH/LH levels will be within a certain range. So, because we see FSH/LH, we are getting a response back to the brain.

-We have no indication of heart issues. One of the things I've read is that KS males tend to be a risk for heart disease. A lot of times this is due to the late DX. Since we've been DX'ed early, we can ensure that Michael stays on a proper diet and treatment, if needed.

-Another risk KS males have is osteoporosis. Again, we're fortunate to have the early DX. We can intervene with hormone treatment, if needed.

Currently we don't have another follow-up visit scheduled with the endo. I got the impression that we will be doing more of that when Michael starts going into puberty. The doctor is going to set us up with a genetics counselor so we can learn what we need to in order to keep track of Michael's progress and keep him on track.

Overall, this was terrific news today. Now we can rest for a while. Our next doctor visit is the regular two-month check up.

Monday

We had our two week check-up today with Dr. Cole. Everything looks great! Michael is weighing in at 7.08 pounds and is now 20.25 inches long. That puts him in the 10th percentile for weight and 50th percentile for length. He's on target with development. He's holding his head up, is startled by noises and will hold your gaze.

Mom, Jake, Vince and I all had to get shots. Jake was NOT happy. To be honest, I wasn't happy either, but we need to protect Michael. Jake asked if he could have a sucker for each shot he got as well as get Michael's sucker since he's too young to eat them. He also negotiated a sucker for each of mine, Vince's and Mom's shot. I finally got him talked down from nine suckers to four.

I also had my follow-up visit and everything looks great. I can drive again - WOO HOO! I feel like I got my freedom back. I'm still supposed to rest and take it easy. Trust me, as tired as I am, that will NOT be a problem. . .

Sunday

Today was another great day - one of those days where we just got to hang out and enjoy our new son. We did have some success in the BF area today. Michael was able to successfully BF for 26 minutes! I won't lie . .  it hurt . . a lot, but it was great that we finally got this to occur. Now maybe those middle of the night feedings won't be so exhausting. It was tough having to feed and then pump.

I had a chance to get out of the house today, which was very nice. Mom took me to the fabric store so I could pick out the new colors for Michael's nursery. The pink, green and orange girly theme that I have now just won't do. I dread having to make another crib set, but my little guy is worth it. Now, what do I do with the set I have?

While at the fabric store there was a boy that was misbehaving. I would put him around six years old, but he was acting more like a three year old. You know - typical whining, being a little PITA, etc. My first thought was that this kid is way too old to be acting like that, but then I stopped. I know nothing about that kid. He may have a learning disability, he may be developmentaly delayed, heck he may even have KS.

It's strange how this DX for my son has completely changed how I view other children as well as other adults. I guess it's easy to judge others when you assume everything is perfect. Now I realize that everything may not be perfect in the way that the majority of us define perfect. We never know what others are facing or dealing with. Maybe that guy that cut you off on the freeway is in a rush to get to his sick child that's in the hospital. Maybe that couple that's blocking the asile at WalMart is enjoying their time together because they just received news that one of them doesn't have long to live. Maybe that "strange guy at work" isn't so strange at all . . . maybe he just doesn't feel like he fits it with the rest of the crowd.

I would be lying if I said the last few days have been a breeze. Far from it. I'm learning so much and so much of what I believe is being challenged. I just keep putting my faith in God that he will show me and Vince the way.