Double Eek!

Eek! Slight panic attack here. The boys' "big" party with family and friends is on Saturday at a local park. 60% chance of rain has been forcasted. With our luck, that 60% chance will turn into 100% at about the time said party is set to begin. We've invited about 45 guests, not expecting everyone to come. It is a Saturday, and we unfortunately gave fairly short notice. Apparently these people don't have anything else to do this weekend because they ALL are coming. Good Lord! What am I going to do?

I have been frantically cleaning my house as a plan B. I have thought about a restaurant or some place else, but finances are tight as it is, so that is out. I so didn't want to have the party here for just this reason.

Plus Is.aac is being a royal pain in my ass. What is it with men and cleaning? I swear, if I see him just standing around twiddling his thumbs one more time, you're going to read about us in the paper. Trust me, it won't be pretty. Can't he see that I am freaking here? (the answer is no. he can't see that. that is our problem.)

And tomorrow--today--is Halloween. There goes a good portion of my evening for getting ready. Double eek!

I do fully appreciate how wonderful it is to have this kind of crisis. It sure does beat the other kind! :-)

Birthday Pictures

Forget Blogger. I'll just go around it. Anyone else having downloading issues, or is it just me?

These are a few of the pictures of the boys' birthday. It took some time to go through the thousands of pictures, and that is only a slight exaggeration. We had two cameras trained on them and a video camera. I think I can say that we have most of everything that happened because of the coverage. Somehow, though, Ja.son did manage to throw part of his cake on the floor without it being caught on camera. Gotta love how quick they are!

Click on Sh.awn's picture to take you to the album. Once there, click on slide show for the full effect.

birthday pictures

P.S. My babies (um...toddlers) are so cute, if I do say so myself! And I most certainly do!

All For One...

Working on a montage, but here are a few birthday pictures...

Ok. I lied. Blogger is being a pain in the rear end and won't let me download. So, I'll briefly describe last night's birthday party--my boys like cake, but presents, not so much. I mean they really like cake. Picture Sh.awn moaning with pure pleasure for as long as he had the cake in front of him while Ja.son smeared icing all over himself. I guess I can understand that because they are, of course, my children, and it is sweet. :-) If you know anything about me, you know that I LOVE sweets.

I'll post the pictures when I get the chance.

We went to the ophthalmologist today. I fully expected to get glasses for Ja.son. He's apparently mildly farsighted. (Can you be "mildly" farsighted anyway?) What I didn't expect was the doctor to ask if they were identical twins. Well, no, they are not (duh). He checked Sh.awn's eyes one more time before declaring that both boys will need exactly the same prescription. Both boys having the same weakness, while not being identical, is unusual from what I understand. Who knew?

So, glasses should be here in about two weeks.

The good news is that it is possible for them to out grow the need for glasses. Until then, they'll get to wear them all the time. Getting them used to glasses is going to be fun, I can already tell.

Not sure how I feel about the whole thing yet. (but they did look cute)

On the way home, we again discussed that we don't have to share everything. I am not sure they listened.

Happy Birthday!!!!!

One year ago today, at 3:31 and 3:32 am, you, my little miracles, were born. Happy birthday, boys! Although your early days were harder than any baby should ever have to go through, you courageously fought with everything you had. And look at you now! You are positively amazing!

Happy 1st birthday, Sh.awn!

Happy 1st birthday, Ja.son!

Mommy and daddy love you very, very much! The hard times are behind us--let the good times roll!

Montage and loads of pictures to follow shortly!

Well. Where to begin?

Ja.son - is doing well. In fact, Ja.son is doing so well, the neurologist feels it will soon be difficult to justify Early Start intervention for him. Not too bad for a baby at high risk for CP. The doctor was quite impressed with Ja.son as a whole, but most specifically, he said that Ja.son's dexterity was remarkable - especially in light of his first observations. He also noted that Ja.son's social and verbal interaction makes him believe that there very well may be little remnants of all of this stuff for the long term (he prefaced it with "although no one has a crystal ball", but still)

Can we all say hallelujah?!!?

Concerns for Ja.son - his eyes. Over the last several weeks, Ja.son has started to cross his eyes somewhat. We have an appointment with the ophthalmologist on Tuesday, so we shall see if the neurologist's prediction of glasses will come to fruition. (probably)

Sh.awn - is doing well...except we now have a preliminary diagnosis of monoplegia in his right arm, most likely from all of the surgeries he had during those very dark days. The good news is that the doctor feels that this is a very mild case, but still. This wasn't exactly what anyone would want to hear about her child.

Prognosis is very good. The doctor was very encouraging about the restraint therapy helping Sh.awn improve the use of his right arm. He suggests we continue to use this therapy several times a day and hopefully we'll see further improvement. I had already decided that I would continue to use the therapy with or without endorsement from the doctor because I have seen improvement in just the short amount of time I've been doing it. It was nice, though, to have someone else confirm that I am helping him by doing this.

Sh.awn was a chatterbox and his usual flirty self during the appointment today. Thankfully, children with mental retardation would not be as animated as he was (based on his thirty years experience) so he ruled out that for Sh.awn.

Can we all say hallelujah for that?!!?

I didn't really feel like that was something that Sh.awn would face, but the confirmation that he should be mentally okay was wonderful to hear.

So there it is.

Is.aac and I talked somewhat about what we were told today (we'll talk more over the days to come). We both agree that we are beyond thrilled about Ja.son. For Sh.awn, while we are not happy about the diagnosis, we both feel in our hearts that this will be something he (and we) will overcome, if not completely, then at least to the point in which is doesn't interfere too much with his overall quality of life. I do believe that, although my fear gets the best of me and I worry about it anyway.

-----

I was able to exhale the slightest little bit today after this appointment. We are not out of the woods, but I can see the clearing in the not too far off distance. I felt okay, like maybe things will be okay...

and then I was filled with a blinding rage. The anger about all of the stuff Sh.awn went through during those very dark days came flooding back.

What if they had corrected the shunt failure the first time? How much damage did they do by continuing to go back inside his brain over and over? How would it have been different if I had chosen a different hospital and different doctors? What if they would have been a better choice? The list of questions goes on and on.

While it is pointless to wonder how different things would be for Sh.awn if he hadn't had those eight surgeries in eight weeks, I just can't help myself.

-----

Tonight, bath time was just a little bit sweeter than it was yesterday. Feeling the boys snuggle up against me while we read our bedtime story was just a little more special. Kissing their sweet heads as I tucked them in bed filled my heart with love.

I was able to exhale the slightest little bit while I said goodnight.

I think we're going to be okay.

Pedi down, neurologist to go. I can't seem to shake the feeling that I am about to walk into impending doom. Please send us all the positive energy you can spare. I think we definitely need it.

I hate that doctors, and more specifically neuro doctors, freak me out so much.

This One Wasn't a Drill

We were evacuated from class this morning. As we took our kids out, there was a distinct smell of smoke hanging in the air. Sirens blared in the distance.

The time was 8:35 am.

Just about the same time it happened last time.

It ended up being a science experiment gone wrong - a project to illustrate the rotation of planets around the sun. It included a light bulb, a ping-pong ball, and ultimately a burning trash can. You wouldn't think something that innocent would cause a fire, would you?

The teacher put the fire out with an extinguisher. The students were unharmed and, save a few students, mostly unaffected. They just enjoyed the chance to be out of class.

The teacher apparently inhaled fumes, was taken to the hospital as a precaution, and later released.

It hit the staff hard, triggering things that people are trying so hard to forget. There is no question now whether PTSD is alive and kicking there.

No question at all.

I suppose this just reaffirms what I always say - my work is far from boring.

This and That

• Had a helmet check yesterday. It looks like Ja.son had a 1/8 of an inch increase in width. Yea. He also had an increase on length, though. Boo. We go back in a month. Yea. Unless we see that it needs adjusting. Boo.


• I was walking out of the boys' bedroom with Sh.awn cradled in my arms. On the way out, I hit bumped grazed his head on the door. He gave me the saddest look before he broke out in hysterics. Took me ten minutes to calm him down. Now I really couldn't have hurt him, as it wasn't really that hard of a thump. I wasn't moving very fast, and the door barely connected with the top of his head. But still. He was mad. Boo. He finally stopped crying and is now asleep in my arms. Yea.


• The ES eval went as well as could be expected today. Yea. I was torn between letting the boys just be themselves and making them perform like circus animals. I swear I had to bite my lip and not say, "Look how he could do (insert some baby milestone)" or "But he can do this!" about a hundred times. Sigh. Anyway, while it did go as expected, it is just hard for me to watch the boys be evaluated. Why can't they just be babies? Plus, having their skills compared was hard, too. I try very hard to not do that because each boy has his own strengths and those are the things that I try to focus on. But for this, it just made me sad to see how much Sh.awn is struggling to do. Overall opinion--Boo.


• The boys turn 1 on Monday. They are just over 9 months adjusted now. Yea.


• I am trying to get the boys' party invites ready to send out (yes, I am aware that I am waaaayyy late), but my printer is being a shit and won't work. Stupid printer. Boo.


• Someone at work anonymously put a dark chocolate candy bar in my box today. I have no idea who it was, but I carried that sucker around all day long so I could nibble it whenever I got the chance. And boy did I make sure I had a lot of chances. Yea.


• ICLW started yesterday. My goal is to become and iron clicker. Or is it commenter? hm. Well, I want to be whatever it is called. I am already behind (I did ten yesterday). So this is a Yea for ICLW and a Boo because I only made it through ten. I do have to say that I am always amazed out how wonderful all the blogs are! I haven't seen one I didn't like yet! That definitely deserves a YEA!
  

So where does that leave me? Yeas = 8 and Boos = 6

Here are some pictures from our Saturday pumpkin patch excursion. (Before you ask, it was very windy and hot, and I didn't want to have to get dirt/mud from sweat out of Ja.son's helmet, so we took it off. Don't worry, it was only off for an hour total the entire day.)

Our My.Space shot...

Sh.awn's excited to go see the pumpkins!

This is fun, mommy!



Ooh, look at this little corn!




Yuck! Get us off of this hay!

Here we are, just hanging around the house...

Ja.son sits up just fine unassisted, but the helmet has made him a little wobbly (hence the pillow). Poor thing. I bet it was hard adding an extra 6.5 ounces to his head's weight. He is doing much better now. Whew.

Fear

The boys have their Early Start evals this week. Wednesday to be exact. I am very nervous about it. I know Ja.son is meeting milestones for at least his adjusted age, but for Sh.awn? Sh.awn still has a ways to go to even reach his adjusted age.

And I don't want to hear anything negative about my little guy.

Because he has come A LONG way in just a short time.

Because he has been through so much.

Because hearing those negative thoughts will only cement my own fears firmly in my mind. I wrestle with those demons enough without having something external reinforce them.

Add to the fun a visit with their neurologist and pediatrician on Friday, and well, this is going to be one long week.

Exciting Times at Our House...

Three things:

1. Ja.son did his first attempt at the army crawl TWO DIFFERENT TIMES today! Yea! Not too shabby for my guy who wouldn't put weight on his arms a little under two months ago (he was quite the lazy boy)!
2. Today Sh.awn said his first real word--dada. He repeated it throughout the day and repeated us when we said it to him. I cannot tell you how excited this makes me, especially because the damage he had from his original bleed was in the language center in his brain. I have loads of hope now, people. LOADS OF HOPE ABOUT THIS! (and I finally let out the smallest of exhales)
3. Sh.awn's two bottom teeth have finally broke free of their confinement. We now have something to brush besides his gums. Yea.

The day couldn't have gotten any better if I had planned it. (insert contented sigh here)

All is well in my world.

Let the excitement keep on coming... :-)

On This Day...

Today is an anniversary of sorts. It is the day that everything in my world was turned upside down. It ranks on the top ten list of the scariest days in my life, and with the way my life has gone this past year, that is saying something.

On this day last year, my water broke.

As is the case on anniversaries, the memories have flooded back. Many of them are not so great. I have been weepy and the dreams have made yet another appearance. Maybe, though, this will take me one step closer to coming to terms with that time, a hill I have to climb to take me just a little farther from the pain of all of that. Maybe this will help me heal.

I sure hope so.

I think I am ready to focus on the tomorrows and not be continually sucked back to the yesterdays.

Maya had a beautiful post this week about her feelings from a year ago when she went into preterm labor. Our pregnancies were similar in so many ways--we got pregnant at roughly the same time, our betas were almost the same, we were pregnant with twins, we both went into preterm labor the same week, and we ultimately delivered early, although she was able to hold on for two precious weeks longer than I did.

So, because we have so much in common, I am borrowing this idea of hers (I hope you don't mind, Maya).

On this day a year ago...

...I was exactly 26 weeks pregnant.

...I had been on complete bed rest for 6 weeks. And when I say complete, I really do mean complete--up only to go to the bathroom and shower for ten minutes every other day.

...I had stayed up late, unable to sleep. The babies were playing soccer, or whatever it was they did in there, every time I tried to close my eyes.

...I woke up at 9:00 am with the urge to go to the bathroom.

...I didn't make it the ten steps to the bathroom before my sweats were wet.

...I called Isaac at work, crying hysterically, because I knew something was wrong, and it was much too early for something like this to happen.

...I called my doctor to say that I had either lost control of my bladder or my water had broken. He told me to head to labor and delivery right then.

...I waited for Isaac to come home from work so we could make the scary ride to the hospital. I told myself over and over that it was too early, it was too early. I pleaded with God that this was just me peeing my pants and nothing more.

...I walked to the labor delivery ward, leaking the entire way. We weren't ever really sure where to go. We hadn't had the hospital tour yet and I had never been there before.

...I listened to the OB and the perinatologist disagree about whether my membranes had ruptured. The OB thought yes; the perinatologist, who was mister doom and gloom for most of my pregnancy, thought no.

...I saw my two sweet little men on the ultrasound monitor, acting as if nothing was amiss.

...I had the test that did show traces of amniotic fluid.

...I learned that Jason's sac (baby A) had ruptured, probably up high, which meant a slow consistent leak.

...I had our first scary discussion with the neonatologists about what birth at 26 weeks would mean to my babies. It didn't look good for the boys.

...I was told that girls are often stronger than boys when it comes to premature births.

...I was told that each day I was able to stay pregnant would increase their chance of survival 5%.

...I was told that most people who had their membranes rupture prematurely usually delivered within a week.

...I had the first of the two steroid shots given to help the babies' lungs mature; we prayed that they would wait for at least the 24 hours needed for the steroids to have an effect before they were born.

...I had my first shot of terbutaline to stop the contractions that I didn't feel but were, according to the monitors, two minutes apart.

...I felt the side effects of that drug for the first time. Fortunately, or unfortunately, it would not be the last.

...I started what would end up being a month of mega doses of antibiotics to try and ward off infection and keep the babies as healthy as possible. (We managed to get sick, and two of us nearly died, from an infection anyway.)

...I spent my first night ever in a hospital attached to two monitors for the babies, a third monitor for contractions, a blood pressure cuff, an IV for fluids and antibiotics, and a heart rate monitor for me.

...I was the most frightened I had ever been in my life up to that point.

...we began the countdown to the boys' birth.

In 17 days the boys turn 1.

May the healing begin.

Show and Tell - The Challenge

This post does double duty. First, it's my contribution to Show and Tell. Second, Topcat issued a challenge, and I am not one to back down from a challenge. (If someone above happens to read this, I do not need, nor do I want any more challenges in my life at the moment. K? I was just making a point. Seriously. As it is, I could do with quite a few less challenges than I've got already!)

Anyway, the challenge is to find the dorkiest pictures you've got of yourself. Supposedly there will be some sort of a dorky prize for the dorkiest pictures. Here are a few dorky pictures of me during my adolescent years. (someone really should have said something about that hair of mine!)

This is me for my third grade pictures. I got the brilliant idea to curl my hair, but there was one curl that just had a mind of its own. And because I am a dork by nature, I had to take pictures of my pictures because the scanner is in the boys' room, and I am not going to wake them up for anything.

Then I got my hair cut toward the end of the year. Here I am getting a girl scout award. (notice the amount of badges on my sash. I was one eager girl scout.)

And then there was fifth grade. I again decided the curl was the way to go. Maybe I was trying to offset the nice little wave my hair in front started doing when I got bangs. I tried to reign in the right side with a clip. I see now I should have done both sides. Oh, let's not forget the gap between my teeth. Had that until the tenth grade, when it mysteriously disappeared one day. (Did you notice the collar?)

Here I am with my bowling trophies. Man, I was a total nerd.

This is my eighth grade Halloween costume. I was a cat. Original, I know. Anyway, the hair is still a disaster. I have a pit stain going, too. Plus, what you can't see is that my undies are totally showing in the back. AND I WORE THIS TO SCHOOL!!! (so embarrassing!)

Okay, so where are your dorky pictures? Come on, we want to see!

Pictures

Here is Sh.awn. He's brushing the two bottom teeth that are finally thinking it might be time to show up. I can actually see them just under the gums. I may be able to feel them, but it may just be my mind playing tricks on me.

He looks pretty content to do it himself. I guess he figures he is a big boy now.

This is a torture therapy technique we're using to force Sh.awn to use his right arm. He has a tendency to use his left and leave his right arm without a purpose. He can use the right hand and arm, especially when I restrain his left arm, but won't unless forced. Hence, the torture therapy. From what I can gather from all of the "experts", this stems from all of the swelling he had on an optical nerve that runs along the side of his right eye. It is extremely sensitive to pressure, and we all know there was a lot of pressure in there for much too long of a time. Anyway, this nerve sort of blurred his vision from his right eye and made it hard for him to see things clearly on his right side (unless he turned his head). To compensate, Sh.awn focused on things to his left and got used to using only his left hand for things. Who wouldn't? But, now that it is becoming evident that his eye issues are clearing up, and he is used to using only the left, we are undergoing therapy.

He doesn't look like it bothers him too much in this picture, but let me tell you, he gets royally pissed when I do this to him. Royally. Pissed. (my boy has quite the temper!)

Here is Ja.son doing a long awaited milestone...holding his own freaking bottle. My kid had me snowed into thinking he couldn't do it. Instead, I think he just decided that he'd let me do it so he could just be lazy. (note to self--watch for this type of behavior in the future. your boys will try to take advantage when given the chance.)

And because Sh.awn is not the only one of my children to be tortured daily (at least until he gets used to this), I leave you with Ja.son in his new attire...

Get this stupid thing off of me, mommy!

Could they have made this helmet any less attractive? I think not. We are getting used to it...slowly.