I have to share with you what I regularly hear in the middle of the night on the baby monitor.
Perrin, who has learned his colors and loves to tell you what colors he is seeing... in the middle of the night says, "Blaaaaaaaack."
He kills me.
Wednesday, August 20, 2008
Wednesday, August 13, 2008
Two year old pictures
Thursday, July 31, 2008
Perrin Update
We've had a few inquiries from lots of different people about how Perrin is doing and whether he is doing well. I went straight to the source and asked Perrin if he felt bad.
As you can see, he is feeling fine and in good spirits. You can also see the very very early stages of actual communication developing with him. Both he and Ryan are very good at using the word "NO" when you ask them questions. At this point it hasn't gotten to be the aggravating bratty version that you see in many toddlers, and hopefully it doesn't get that far. Luckily all three of the kids are working real hard on developing a larger vocabulary and Meva and I are encouraging them to use many words by asking them the appropriate questions.
As of right now, I feel safe in saying that each on of the kids can consistently identify all the letters of the alphabet, basic shapes, basic colors, and the sounds of each letter. I think I spend half of my day affirming them as they bring different objects to me and tell me what it is, what color it is, or what shape it is; it's actually all very cool. But what I think is probably the coolest thing that they are doing now is trying to say the ABC's in order with me. They are no where close, but I think I am getting about 20% accuracy overall as I lead them and try and get them to either say the letter along with me, or immediately follow my letter with the correct letter (an often it's sound). The fact that they all really enjoy this and get excited about it is just icing on the cake.
Back to Perrin, he had his follow-up appointment with his neurosurgeon yesterday and he was given a very good bill of health. He should be able to resume his physical therapy within two weeks and get back to full normal activities, which means taking a regular bath and going swimming (which the boy absolutely loves!!) For now, that's all we have to say. I am way behind on photo's of the kids, so I am just going to put a bunch on here for everyone.

Yummmy, Bananas!!

Ryan is so funny he even has a Jester's Hat

Sarah with pigtails running from bedtime!

The triplets at a water exhibit at the local Children's Museum

Sometimes you just don't want to wear pants, no matter how embarrassing it's going to be when your Dad show's this to your friends and prom date!
As you can see, he is feeling fine and in good spirits. You can also see the very very early stages of actual communication developing with him. Both he and Ryan are very good at using the word "NO" when you ask them questions. At this point it hasn't gotten to be the aggravating bratty version that you see in many toddlers, and hopefully it doesn't get that far. Luckily all three of the kids are working real hard on developing a larger vocabulary and Meva and I are encouraging them to use many words by asking them the appropriate questions.
As of right now, I feel safe in saying that each on of the kids can consistently identify all the letters of the alphabet, basic shapes, basic colors, and the sounds of each letter. I think I spend half of my day affirming them as they bring different objects to me and tell me what it is, what color it is, or what shape it is; it's actually all very cool. But what I think is probably the coolest thing that they are doing now is trying to say the ABC's in order with me. They are no where close, but I think I am getting about 20% accuracy overall as I lead them and try and get them to either say the letter along with me, or immediately follow my letter with the correct letter (an often it's sound). The fact that they all really enjoy this and get excited about it is just icing on the cake.
Back to Perrin, he had his follow-up appointment with his neurosurgeon yesterday and he was given a very good bill of health. He should be able to resume his physical therapy within two weeks and get back to full normal activities, which means taking a regular bath and going swimming (which the boy absolutely loves!!) For now, that's all we have to say. I am way behind on photo's of the kids, so I am just going to put a bunch on here for everyone.

Yummmy, Bananas!!

Ryan is so funny he even has a Jester's Hat

Sarah with pigtails running from bedtime!

The triplets at a water exhibit at the local Children's Museum

Sometimes you just don't want to wear pants, no matter how embarrassing it's going to be when your Dad show's this to your friends and prom date!
We'll post more as we have time, but if you want to see bigger images, just click on the pictures.
Monday, July 28, 2008
Normalcy
It has been a while since we last posted. Perrin came home last Monday. We were really just so happy to have him here, blogging took a back seat. He was let home a little early as he was suppossed to get an MRI before discharge, but because that meant just sitting in the hospital for a few more days, we asked the doctor if he could just come home and we would come back for the MRI as an outpatient. So we were all thrilled to have him come home earlier than expected. When he saw the van pull up at the hospital, he was so excited. After arriving at home, Ryan and Sarah ran up and hugged him. He was still a little sore at first, crawling more than walking, but he's pretty much back to normal now, and it's a nice feeling.
This video is actually from the week before Perrin's surgery, but it captures a lot of what they do these days. I'll update more soon.
This video is actually from the week before Perrin's surgery, but it captures a lot of what they do these days. I'll update more soon.
Saturday, July 19, 2008
Perrin Update


He is now out of the Pediatric ICU (PICU) and in a regular room, off all wires and tubes except his IV which isn't hooked up anymore. This move is good in so many ways. There is a phone in the room, rather than having to leave the room and scared child to go a considerable distance to talk to anyone. There is a fridge in the new room, which is also nice as the PICU has a no eating in the room policy. There is a reclining chair and second bed in the room, as opposed to the chair with a leg lift in the PICU, and a great improvement over the tile floor I slept on last night. And Perrin, as you saw from the last post is our escape artist, so imagine how he feels with a pulse ox on his toe, blood pressure cuff on his leg, three leads for cardiac and respiratory monitoring, an IV with tubing, and hospital gown with multiple ties to work with. I think he is thrilled to be untethered in multiple ways now. Though you can see in the picture below with the little tear in his eye, he is ready to go home - despite him doing so well, he cannot be released until the MRI is read, and he won't be getting his MRI 'till sometime Monday.

Our Hero Without Pants

I think it is important to note here that nothing was ever able to clearly indicate that Perrin was suffering from TCS, but there were indicators from different areas and different people that lead us to believe that surgery was the best option for him. Meva and I both trusted Perrin's medical team, especially his neurosurgeons, that after talking it over we agreed to go through with the procedure.

Basically Perrin's spinal cord should be free at the bottom, hanging inside the vertebrae and ending before they curve into the tail bone. His wasn't. There was some type of fatty fiber connected to it and pulling it down and stretching it. Think on how it might feel to have your spinal cord continually stretched everyday. That's what he went through. It became much more problematic once he began walking (which in retrospect is amazing) and contributed to his unusual "gait."

Once they cut the fiber, they were able to see an immediate release on tension, similar to pulling your shirt out in front of you and then leaving go. This was confirmation that he did indeed have tethered spinal cord syndrome.

As of Friday night there was no definitive word on when he might be coming home. Current thinking is anywhere between Sunday and Tuesday, so I would imagine that alot has to due with how he responds tomorrow.
I just want to say that I am floored with all the kind and wonderful words that so many people kept Perrin and us in their thoughts and prayers. That meant a great deal to both Meva and I.
Hopefully tomorrow I or Sunday Meva and I will bring in another update and some photos from the hospital. But for now, enjoy the shots I have put throughout this post of our Man of the Hour. He doesn't know it yet, but he is already my hero, even if he doesn't always wear pants.

Saturday, July 12, 2008
2 Down & Infinity To Go
Well the kids have finally made it to 2 years! I say this because the way they've been behaving lately I wasn't sure if they were going to make it this far. These days I truly feel outnumbered and mostly overwhelmed. If I were to be honest, I'm loving every minute of it while I try to hold on for dear life. And if this alone wasn't enough of a challenge, we've taken down the gates and given the triplets access to the rest of the house!! What it really means is that they can now get a running start when they attack! Let me start with some birthday pictures. We didn't do too much with taking pictures of the actual day as we had a full house and Meva and I were very busy, as were the kids.
As did Perrin

Ryan really liked his
The nicest part was that the cleanup was less than last year even though they all tried to make a mess.

Sarah ACC (After the Cupcake!)
Perrin ACC
Ryan ACC!!! How did he get THAT messy?
It starts by being too lazy to use your hands
Then it ends with your head face down in a cupcake of course!!
The birthday party was much fun and it was nice getting to see everyone, which seems to get harder with everyone leading such full and busy lives these days. And like everyone else, we've been keeping busy with all sorts of activities.

This year we decided on much simpler and smaller cakes for each kid.


Ryan really liked his
The nicest part was that the cleanup was less than last year even though they all tried to make a mess.

Sarah ACC (After the Cupcake!)




The birthday party was much fun and it was nice getting to see everyone, which seems to get harder with everyone leading such full and busy lives these days. And like everyone else, we've been keeping busy with all sorts of activities.

Sunday, June 22, 2008
Almost 2
This picture of Perrin is typical of how we find him in the morning as you saw from the last post. He has learned how to take his shirt off, and for the most part put it back on on his own... Sarah has mastered her socks, and somewhat her slip on slippers. Ryan's head is too big for him to get his shirt off on his own, and though he's "tried" to get his socks on, most of the time he just gets frustrated with it.
I've tried to capture a few of the things the babies are doing these days.
Sunday, June 01, 2008
Disappearing Babies
Although it's happening right before our eyes, I want to deny that the kids aren't babies anymore. I suppose they haven't been babies for months now, but it doesn't mean that I am ready to acknowledge they are really toddlers and not the tiny little things that Meva and I brought home from the hospital almost two years ago.
I plan on giving a more detailed update later this week--- lots of words, me rambling on, just like normal---- but for now I'm just going to show you the results of an experiment I've done with Perrin. I call this, What Does That Boy Do In Bed??? Keep in mind whenever we put him down for a nap or for bed he is always clothed properly and completely dressed like his brother and sister.....

I plan on giving a more detailed update later this week--- lots of words, me rambling on, just like normal---- but for now I'm just going to show you the results of an experiment I've done with Perrin. I call this, What Does That Boy Do In Bed??? Keep in mind whenever we put him down for a nap or for bed he is always clothed properly and completely dressed like his brother and sister.....
Ryan was nice enough to pose for you so you could see an example of how the kids are dressed when they are put in their cribs.
It's not just the boys, are wild haired little girl also is dressed accordingly. And yet when I open the door and turn on the lights......
Sometimes Perrin's shirt has been turned around.
Sometimes he takes off half the shirt.
As you can see, overalls do not impede this ritual!
Of course there is the ever popular "Skins" look too!
Sometimes we can't quite get the shirt all the way off, so we stuff our pillow against the wall!
I'm not sure how this happened, but the other morning he had somehow found another shirt and put it on UNDER the one he was wearing the night before!!
There is of course quite a bit of activity prior to falling asleep. It includes banging, slamming, singling, and yelling along with the usual crying and laughing. Sometimes I think he is fighting some imaginary, mythical monster inside his crib because it looks like a war zone in the morning.
The outside floor of the crib. Blankets, pillows, and even his companion duck have all been ejected in some type of violent upheaval.
He also likes to play a game with me called, "Can Daddy find my shirt?" I often have to pull the crib from the wall and pick it up off the floor.
To prove that I wasn't joking or exaggerating, here if what prompted Meva and I to start this experiment. At some point in the night he managed to dismantle the spindle and he's holding it in his hand for me. I particularly like the Tarzan look of his shirt.
There is of course quite a bit of activity prior to falling asleep. It includes banging, slamming, singling, and yelling along with the usual crying and laughing. Sometimes I think he is fighting some imaginary, mythical monster inside his crib because it looks like a war zone in the morning.

The funniest part of this for Meva and I is that he's doing all of this in the dark. Some how he not only takes the shirt off, but he finds it and then puts it back on, albeit with varying degrees of success! The other night we learned a valuable lesson with Perrin when Meva put him to bed wearing a shirt that had a hood on it. He had been in his bed for almost two hours when he began screaming urgently. By the sound of his crying I knew something was wrong, so I went to get him. When I pulled him out of his crib, his face was completely covered by the hood! He had taken the shirt and put it on backwards, covered his face with the hood and then couldn't get it off in the dark! He was very scared, but I couldn't help laughing at the predicament he had created for himself!
If you want to see larger images of the pictures, please click on them for enlargements.
If you want to see larger images of the pictures, please click on them for enlargements.
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