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.

video


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.


video

Saturday, July 19, 2008

Perrin Update

It is amazing to me how well Chuck can function and write despite sheer exhaustion. I am not gifted in this way. Chuck is spending the night in the hospital tonight with Perrin, and has stressed how important it is to him that I update the blog today. So bear with me that this is short and sweet, as I have already turned into a pumpkin today.






Perrin is doing amazingly well. His pain seems to be much less, and as a result he is more mobile. We were able to hold him for the first time since the surgery today. He had been crawling around in his crib, and giving his Perrin bursts of joy jibberish today, so we were thrilled to see him doing so much better. He still is very leary of any nurse or doctor who walks in the room, and shoots them this look that says, "I'm watching you. You cannot be trusted." The staff I have come across have been nothing short of wonderful. They even gave Perrin's baby an IV.


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 just wanted to take a little bit of time out to let everyone know that Perrin has pulled through his surgery very well. For those of you who weren't in the know, Perrin's medical team (which consists of his pediatrician, 2 neurosurgeons, physical therapist, and one orthodist) began to suspect that he had tethered cord syndrome and a series of tests were started.

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.

Medical jargon isn't my strongest language, but I feel I can speak it passably if I am forced to. As it is 3am and I still have work to do, I'll leave the technical aspects for Meva to use as she bedazzles and illuminates you with $75 words, I will talk like an actor who's played a doctor on TV.

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."

So, the medical team only suspects it and wants to cut open his spine and check it out. On Thursday afternoon they made an almost 4 inch incision in his back, removed that pesky "back bone" that was in the way and then opened a flap to reveal the spinal cord and a mass of nerve endings. Using some type of electrical system that is much more complicated than I am smart they identified the "live" nerves and created path to this tethering fiber. Basically they turned my little boy into a living game of operation, DON'T TOUCH THE SIDES!!

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.

Right now we've spent the last two days with Perrin laying on his stomach and he might have one more such day to go or less. To his credit he hasn't tried to wriggle around or move too much because it causes quite a bit of pain to him. Even picking him up to hold him on my chest gives him discomfort. I believe the plan is for him to begin working on sitting and then walking. For me the hardest part was just watching him lay there and not want to move with a tired and kind of sad look in his eyes. But he's such a tough kid that it didn't last long and he was laughing and giggling, playing peek-a-boo, and trying to punch my head off. He was also very interactive and talkative, which I think shows how strong he really is and that poking around in his head and his spine aren't enough to keep him down!

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.


The most recent morning I was greeted by the Au Natural Club. This one didn't end as nicely as the previous ones. This time it got dirty!

That's not Chocolate!!


Of course this is usually what I get from him, so I guess the adventures of Naked Hippy Cowboy are worth it!

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.

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

Sarah enjoyed her cupcake.

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.



There's Coloring


Eating our Puzzles!


Visiting museums to try on hats


Going out to the river.



And even getting our hair done all pretty! Thanks Daddy!

Well that's about all for today. I have a lot of pictures still to post here, so I'll try to be back again tomorrow.