Thursday, July 31, 2008
I know that for many people, seeing a deer isn't all that interesting. But I know there's a number of people with kids who follow the blog and also some people from areas where there just aren't deer wandering all over the place. So this morning when I saw a deer in our back yard, I figured I'd snap a couple shots and post them.
As I mentioned in the earlier post, we were going to pressure the doctors to move forward with seeing and hopefully treating Colby's seizures. At first Yale said they didn't get the fax from Colby's Neurosurgeon. So they refaxed it, and refaxed it and still Yale says "nope, didn't get anything." Well, Tracey apparently let them know a little about how she felt and miraculously, they found the fax to get Colby referred to Yale. They said they'd call back and let us know when we could bring him. A little bit later and Tracey called me in the office to say Yale could see him........on January 8th, 2009! Can you believe it!?? That just seems totally screwy!!!! Tracey then called the neurosurgeon and told him a little about how she felt and we now have an appointment NEXT WEEK (though we don't yet know the day) right at CCMC. The whole medical system drives me absolutely nuts sometimes.
So, it's a step in the right direction. Once we get more specific information, i.e. the day and time, I'll let everyone know.
(Colby says "Wow Hannah, I just LOVE your arm!!!! So...beautiful!" Hannah was awesome with him...very patient and like playing with his toys. Thank you for having us over, Randy, Mary and Hannah
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Although this video may not seem like much to some people, things are in a much different perspective when your child's future is uncertain. Each little "normal" thing he does is a victory for us. In the last couple weeks he's been reaching while lying on his back. He won't quite roll from back to belly, but this is the next step to get him there. He'll get onto his side and then flop back onto his back.
We're optimistic about Colby's future. The doctors have been very pleased with his progress when compared to other children with a level 3 brain bleed and hydrocephalus.
I do what I can to read up on his conditions and it seems that most people with a grade 3 brain bleed are very delayed and have some sort of life long affect. But we'll continue to work with him and help him do all that he's able to.
Tomorrow's video will be of him finding his voice. He's so cute when he just lies there and talks to himself. He's definitely found the "B" consonant sound. He'll also do the "G" sound. He won't do it in correlation to anything yet, but just the fact that he's figuring out what sounds he can make is a cool thing to watch.
Monday, July 28, 2008
Wow, as of yesterday, Colby is 11 months old! Less than a month now and the Colbster will be the big.......One.
He was a crank pot today. I love him to death but when I'm tired and he's tired....yeah, babies can loose just a smudge of cuteness when you're tired to begin with and then they're tired and cranky and they cry...and cry.....and cry for no apparent reason. I'm sure they're just trying to tell us what's happening. Today he was cranky and no matter what we did, he'd just fuss. I think he's just tired. Don't know. He'll get a good night's sleep, so will and I tomorrow will be a different day.
We're still waiting to hear something from the EEG. Hopefully sometime this week.
I took some video and broke it up into a couple of small movies. I'll post one every day or so. The first is of our boy eating his dinner. He's a VERY GOOD eater!!! Especially his fruit and cereal. Don't you love how it looks like he's chewing! He's like a little bird. He'll open his mouth and wait for you to scoop some fruit in. You can see his seizures a bit in the film. They do seem to happen a bit more when he's eating from the spoon. Not so much when he's eating from the bottle. Again, hopefully this week will shed some light into this.
Saturday, July 26, 2008
(Colby and mommy)
(I love my boy!!)
(Colby and daddy)
(Colby says "Ow...um.....yeah....that's my eye."
(Colby, Caitin and Celeste's son, Holden.)
Friday, July 25, 2008
Tuesday, July 22, 2008
Sunday, July 20, 2008
(If you get close enough, Colby loves to grab your nose or lips. It's a really quick way to know if he needs his little fingernails clipped ! His little hands and strong and sometimes he'll get a hold of you, start pinching away and man does it hurt !)
(....still playing with the bag...)
Friday, July 18, 2008
(you can silence the music by clicking on the little pause button on the right hand side of the blog)
I took a video this morning. You can see Colby having a couple seizures. They're just in his eyes and face. There's no rhyme or reason to when they happen. Though we do see that when he eats with a spoon, it happens every time he takes a bite. We're still in the process of getting transferred to Yale and we'll tell the neurosurgeon about that when we get there.
Tuesday took the wind out of our sails. But as the video shows, Colby is doing very well and we'll continue to work with him to help him continue to progress. Having PVL, a Brain Bleed or Hyrdrocephalus doesn't mean a child will have issues. Each one increases the likelyhood having something wrong. So the more things he has stacked against him, it's just the more we'll have to work to empower him to do all he can.
We had been going along the past couple months thinking we were in the clear and that all we had to do now was teach him, help him and empower him. So the thought of some new hurdles shocked us. But I thought back to when we first entered the hospital about a year ago and how our vision of having twins was suddenly rocked by our situation. But here we are just about a year later and all things considered, we're all doing very well. So the fact that Colby has some seizures and PVL is just something we'll deal with. Period. So let's move on.
Colby is a strong little boy. He's happy to be with us and we're so very happy to have him. That's what's most important.
Wednesday, July 16, 2008
Colby has been a bit more tired lately and I read online that some kids who have seizures have them while they're sleeping too which interferes with their sleep pattern. When Colby's awake, he's alert and happy, but he seems to get tired more frequently now and is taking more naps than usual. So we'll keep an eye on that too.
We've started to process of getting Colby to see a neurologist. There's some paperwork to be done and probably a bit of a wait to get in to see him/her, but we want to push to get him seen as soon as possible. We'll be bringing him to Yale. It's a bit of a drive for us but well worth it if they can help our little boy out.
I can't thank you guys enough for your comments and e-mails. The support is worth more to us than you could ever imagine.
I'll try to take some pictures and maybe even some video in the next couple days and get that up.
Tuesday, July 15, 2008
Monday, July 14, 2008
I am fully booked with appointments tomorrow afternoon and into the early evening. But as soon as I have time, I'll post to let everyone know what the neurosurgeon has to say.
Friday, July 11, 2008
In the past week or so Colby started squinting his eyes. At first we thought he didn't like the light. Then we just thought it was just an odd thing he was doing. After a bit, we noticed when he squinted that his eyes would roll either down and to the right or just straight down. And they'd go so far that you can barely see the color of his eyes. On the trip up, he was doing it a lot and we started to get concerned. A malfunctioning shunt can cause the person to do something called sunsetting where their eyes go straight downward. Also, people with brain bleeds can have seizures. We weren't sure what was happening with our little boy so when we were up in Maine we called Colby's neurosurgeon. After a brief discussion, he suggested we bring him to the hospital in Bangor to get a CAT scan. Our concern was that his shunt was failing. So we packed some overnight clothes in the event he was admitted and headed off for the hour plus trip to Bangor. I was quickly thinking through all the Plan B's if Colby was to be admitted up in Maine. I thought of how we'd get the rest of the family home who all came up with us in the minivan. How to let them enjoy the rest of the vacation, what about work and my upcoming appointments. And Tracey's work..... Long story short, his CAT scan showed his shunt seems to be working wonderfully. His ventricles are really small which means the shunt is draining things well. However, having ruled the shunt malfunction out, this now points towards seizures. When Colby is doing his eye thing, the rest of his body moves fine. He doesn't stop whatever it is he's doing. But you can lift his eye lid up and his eye is straight down. You clap your hands or do anything and his eyes won't come up until they're ready. Each episode lasts only 1-4 seconds, but at times it's one after another for a minute or so. And then he'll go hours without doing it, then maybe just one or two here and there. We do find that if he's concentrating on something, he doesn't seem to do it.
We followed up with the Neurosurgeon after we got the results of his CAT scan and now have a follow up appt on Tuesday. We've been doing a lot of research online about seizures and I guess they're not as devastating as I thought. At least if these do turn out to be seizures and if they limit themselves to what he's doing now, it will probably be manageable. Well just need to tackle this next hurdle and keep moving along.
Apart from that the only bit of drama was the morning we were leaving. Everyone was up at the house packing. I brought the minivan down to the shore to put the fishing stuff, snorkels and masks and the tube we use for tubing into the van and drive it up to the house to put it away. Everything fit in the van fine, but I thought I had a brilliant idea to put the tube on the roof of the minivan. The drive up the driveway to the house was short. I wouldn't have to deflate the thing....sounded just great! So I picked the tube up and threw it up onto the roof of the van. Just as it hit the roof I heard what sounded like a POP then something like little stones running down the side of the van. Evan was putting his fishing stuff in the back of the van when this happened and I heard him say "What !!! Ow my god !!" Turns out the thick plastic part of the tube where you attach the tow rope had gone over the far side of the van and hit the back left window just right to totally shatter it into a million little pieces. I walked around the other side to find little pieces of black glass all on the ground and worse yet....all in the back of the minivan. "hmmm, " I thought "this will delay us getting on the road!" I had to drive to town (about 1/2 hour away), spend about $10 on those quarter operated vacuum machines to get all the glass out of the van then buy some plexiglass and a boatload of duct tape to make a make-shift window that would withstand a 7 hour drive home.
We'll just chalk them both up as part of the adventure.
On a more positive note, Colby has been doing absolutely wonderful with his motor skills and with sitting up. His hand movements are very deliberate and precise. He'll take his binky out of his mouth, look at it, turn it around a bit and try to put it back into his mouth. He'll also reach right for something that he's interested in.
Just a couple weeks ago, we were trying to get him to sit up on his own. But he didn't want anything to do with it. He's simply fall over and cry. Now, if you have him on your lap, leaning against you, he'll pull himself upright and seems to prefer to sit upright rather than leaning back on something.
I've been watching him today as Tracey had to work. He's been very vocal and playful all day. I love to see him grow and progress !!!
Below are some pics from our trip.
Amie on the lake in a kayak with coffee in the early morning....life is good.
My niece, Gabrielle, with Colby. You can see how well he sits up. We got him this little driving tow thing and he loves it!
Colby and Daddy in the morning. (Great picture honey)
Everyone getting their fishing rods in order before we hop of the boat.
Evan, Gab and Lexi.
Dave giving Evan some pointers on the guitar in camp.
Nikki looking quite happy to have a glass of wine in her hand.
Dave playing some Dave Matthews out at the fire one night. Nice job Davey !!Some wildlife....a big snapping turtle crossing the road. There's all kinds of stuff up there. There's often at least one pair of bald eagles up there each summer. Foxes, coyotes, deer, moose, black bear....you name it...it's probably in the woods up there. Ahhh yes. Mosquitoes really suck! Remember that cove I brought them to? Well, you have to get out of the boat and to into the woods on the shore to make your way up the river. The mosquitoes, black flies and horseflies were horrible. Poor Amie just had her bathing suite top on. She had to turn back about 1/4 of the way up the river. I can't imagine what her back would have looked like if she kept going!
Wednesday, July 2, 2008
(Colby and Mommy)(Colby says "Haaaa Yahhhhhhh!!!!!"
(Colby feeling strong after knocking over some blocks)