Tuesday, June 29, 2010

Our first trip

Through Alex's eyes

Mommy says we are on a trip.
But this looks a lot like home to me.
Here we are playing on our mat

and Nicholas found our chairs. 
I'm wondering where the food is?

Okay well this isn't where we normally sleep but Nicholas liked it well enough.
He kept trying to peek at me whenever I played in my tent before sleep.
Mom says these worked out really good!

okay well this definitely doesn't look like our house
although Daddy says others might be thinking it doesn't look
much look like "camping" either.

But it sure is fun!!

We ganged up on Grandpa!

I'm working on my game plan here
Want to get my hands on the thing Grandpa has 
with all the buttons.

We also got to hang out with Aunt Paula!
(Aunt Becky, Sophie and Grandma were here too
but we didn't get to spend too much time with them
because they had colds) :(

Mommy and Aunt Paula

I'm not sure whats going on
but I'll just hang out I guess

Daddy said it was all uphill and 
called it "Watkins Glen"

Grandpa hung out with Nicholas. 
He even took his hat but I don't understand since he had one already
Mommy says Grandpa likes an excuse to be silly

Here's the rest of the gang with Aunt Becky and cousin Sophie
Aunt Paula and Mommy were taking pictures

Daddy stopped and needed to drink out of this thingy a lot.
I just wanted to take his hat.
Why does every one like these things?
I'm happy I don't have to wear one!!
(get it? I don't have to wear that purple hat anymore!!!)
Mommy and Daddy say after wearing it for six months,
its all done!!!

phew, we finally caught up with Grandpa and Nicholas
Grandpa is STILL wearing two hats!

Mommy said this was the first time we have ever been
on these seats with chains.

I liked it but Mommy thought we were starting
to peter out. I'm wondering who's Peter?

Every one took turns taking drinks, it was really hot!!!

Mommy says maybe next year my brother and I can
have some treats that go in the fire.
hmmm, I'm not so sure about that but she promises
that they are yummy!
and I like yummy!

This camping thing is fun!!!
Nicholas and I talked and we are free again next weekend.

Mommy and Daddy say that everything went well
but that they are tired!
Mommy says the only ones who really relaxed were
the kitties (and they were at home)!

Monday, June 21, 2010


We are in the throes of preparing for our first family "vacation". I use the term loosely. We are bringing our boys with us for their first camping trip. Mark and I have enjoyed camping for years. Something about being away from the house and all the lists of things to do, away from the TV and gulp....even the internet (something for the first time I'll probably be having the harder time with than hubby will--I'm addicted to following other families/blogs, checking in on babycenter.com, email, etc.)

There's also something about breathing in the fresh air all day, taking walks in the woods, playing card or board games, getting lost in a really good book, cooking over the open flame and my favorite: sitting around the camp fire being lulled into relaxation by the crackles and pops and in the chilly night air feeling the heat of the flames as they warm my skin. Just thinking about it transports me.

Although thinking about going with two babes in tow, I'm thinking it won't quite get to the same level of relaxation. I'm way more reluctant than hubby about this trip. He's very gung-ho "will be a great get away with the kids and start of traditions to come" attitude and I've been admittedly a little more "oh my gosh how miserable are they (then I) going to be if they don't sleep there (and i can't sleep) and are fussy the whole time." Also its a little overwhelming as we make a list of all the daily things we need to pack with us (think their medicines, syringes, oxygen tanks, monitor, eye patches, cleaning supplies for helmet, not to mention just the regular baby stuff like diapers, wipes, bibs, pack and play, high chair seats, toys). Well you get the idea. It makes me just want to put wheels on my house so I don't have to load and unload everything just for two and a half days. Ofcourse that wouldn't be so much "getting away" now would it?

Okay well don't feel too bad. I'm hardly talking about "roughing it". Hubby and I did that for a number of years. We survived one entire three day weekend in a tent that kept flooding and had to buy a portable space heater to dry our clothes and towels. I'll say instead of making multiple trips to Walmart to buy things to help us through, I would have probably kept driving past Walmart to home but Hubby had other ideas and he was actually enjoying himself!! He rigged up several huge tarps between trees so we could be outside of our tent but think giant mud puddles while trying to cook on a fire that keeps getting put out by the winds/rain. Well we spent a lot of that weekend trying to stay dry in a walmart and even chinese restaurant when we just had to give in to nature instead of trying to cook a dinner in cold wet ash. An adventure for sure but not one I'm really looking to repeat.

It was one of the reasons I prodded hubby to start looking at campers several years ago. After looking around a couple of summers as our wish list kept climbing, the pop up camper we initially intended to get turned into something more. We made a huge indulgence and bought a REALLY nice camper. Its awesome. No really, its a hotel on wheels. It has heat, air conditioning and even a shower! Its kitchen is even equipped with a microwave (really) and the kitchen itself is even prettier than the one in my own home! When we bought it, we were still in fantasy mode of having a family and being able to take it away on summer vacations any weekend we wanted.

We will be as prepared as we can be for this trip. We've even half begged, half dragged my dad, step mom and sisters to come along and be in the site next to us hoping it might be a better experience with a couple extra hands/arms/eyes and just for hanging out in general.

I have to say after writing this I know my hubby has the right attitude. This may not be like any relaxing camping trip in the past (minus the flooding one which was definitely anything but relaxing) but it will be our first family trip together. I'm sure the babes will have their times of fussiness just like at home, we will forget things that we should have brought and we will bring way too many things that we don't really need. It will be a lot of work keeping them occupied and safe and we will certainly learn things for the next time. But in the end we are getting away with our family, our boys, and I'm certain no matter what it will be an adventure to remember, just hopefully in a mostly good way :)!!

Here's a few pics of the boys getting acquainted with the camper...

and test driving the carriers

We welcome any tips/advice from any one with getting away with little ones!

Thursday, June 17, 2010


Well the overnight oxygen study did not go as well as we hoped. To be honest, we had a feeling right from the start. The machine was beeping way more than usual. Figures on testing night of all nights. Pulmonary said he had too many episodes of lower oxygen (80's). He recovers very well and shoots right back to the 90's but they still don't like the number of them. I am hoping it was just an "off" night and not some sort of new trend. I really had psyched myself up that he was ready. I guess I'm the one who is ready.

I'm sure you can read my disappointment. Don't get me wrong, I know its not the end of the world certainly. I just hate the battle every night of putting the dumb things in his nose as he tries his hardest to fight us and then taping it to his face so hopefully he doesn't pull it off in the middle of the night. and then his sweet sensitive skin is all irritated from the tape. argh. there could and are much worse things I know so I guess I'm just having one of those woe is me nights.

What bothered me the most was pulmonary saying they'd like to refer him to a sleep clinic to see what might be underlying this (its been over three months since his pneumonia so a long time to still be needing oxygen). Ofcourse with his spina bifida they threw out wanting to rule out chiari issues. Arnold Chiari malformation is something that all people with spina bifida have, it is the pulling down of the brain stem. Many individuals never have any symptoms due to this. Although it is something that many of us learn about right during pregnancy and fret about. There are many symptoms or complications that a small percentage of people can have. In infants, breathing and swallowing issues top the list. Honestly whenever Alex is having a health issue, its always in the back of my mind (okay sometimes not so far back) is this shunt related? Is it working properly, should we get it checked? Its been a long time since I worried about Chiari.

I really think if his breathing issues were due to Chiari, it would be more severe, not this subtle. I really think more than likely they are being overly cautious and I"m fine if he still needs to have the oxygen but why did they have to stick the possibility of Chiari problems in my head? He was so premature and all the scarring of his lungs, I"m thinking even though his last chest xrays looked better, maybe he's still just healing them. Well they suggested that we consider going to a sleep clinic to assess what is going on (because you know we are getting pretty bored with the number of specialists and appointments we have now, ha). Mark and I questioned them on the need for the referral this soon. We also discussed that we think Alex is having a flare up in his reflux and having his meds increased and couldn't that be contributing to these issues and she agreed. So long story short (oh right, I don't do short so well, do I?) we are back on the oxygen and re-trying the overnight study in two weeks. If he's not improved, then we agreed we'd do the sleep clinic.

For any parents who might be reading this that have any experience in the sleep clinic, would love to hear more information. or any one with experience with SB and difficulty weaning from oxygen, would love to hear your experience especially. THANKS so much!!!

Tuesday, June 15, 2010

Ortho update

We had our ortho appt today which I was feeling very anxious about. The last time we were there we discussed Alex's congenital scoliosis which is very high up in the cervical area and already had a curve to it. This is an area that they wanted to watch closely. The great news is that you go and get the xrays and within minutes sit down with the doctor to review them. The xrays show that cervical spine still has a curve to it, and looks a little worse than last time. Most people would not notice now but Alex has a definite head tilt, almost at times like he is "stuck" with his head tilted back and to the right. We have been working with therapy for months on this and Alex has been making some great progress with this (with the help of his fabulous physical therapist "Mrs. Julie") but the doctor confirmed that the deformity in his upper spine is in fact contributing to this.

We are quite worried about this knowing that if it continues to get worse the only treatment is very delicate surgery to fuse these vertebrae together in hopes to prevent it from curving any further. The doctor has explained that we want to put this surgery off as long as possible, in a "perfect" world all the way until Alex is at least eight or nine years old so he has time to grow. Because the surgery would fuse these vertebrae together, this area would be prohibited from growing, stopping growth in any area is not something you want to have to do in a baby. And any other spinal surgery at all is not something we want to have him need again. Although the doctor wants to continue to follow this closely, he is careful to reassure us that as of right now, this curve is not significant enough at this point to have to make any decisions about. He will get more xrays in another 3-4 months. The thought of this getting worse frightens me. I can't even try to put into words how much but I will do my best not to let the worry get me. It would be fruitless. God has brought Alex (and both of our sons) through soooo much, and I have to have faith that He will walk us through this as well as He's done all of the rest.

On a lighter note, the Ortho also agreed it was time for Alex to get a stander. This is simply a piece of equipment that will assist Alex in being upright and bearing weight. The ability to stand or walk is more than just a milestone, it has huge medical benefits. The act of being upright and bearing weight alone helps to build and strengthen bones that otherwise might not get a chance to be used and as a result atrophy, makes the circulatory system work more efficiently pumping the blood from the heart to limbs, as well as improving respiratory function to the lungs. The act of being upright also enhances bowel and bladder function, as well as decreasing potential for pressure sores and skin breakdown.

I've been trying to upload this video but blogger is not cooperating. Check back later and enjoy!

In the video is our amazing "Mrs. Julie", Alex's physical therapist. In the background is one very happy and shocked mommy and a cheering brother!! This is Alex's first time pulling himself forward which is such hard work and we couldn't be more proud of him!!!!

Saturday, June 12, 2010


We've been told that we have been slacking a little on updates
 so we wanted to stop in a minute and say hello. 

but just for a minute.....

because we are on the go, go, go.....

you don't mind if I do a little yoga while we're catching up, do you?

I usually do these before and after naps. 
Oh and sometimes during the time I"m supposed to be napping too. 
gotta stay limber.
I've been pulling myself straight up on the stairs and one of the living room chairs too.

My mommy hasn't gotten a good picture of this though.
She's too busy with one hand on her mouth and the other near me.

and centered. ummmmmmmmm
I'm concentrating, its not as easy as it looks getting both of these 
hands together AND have them make a noise.
I practice a lot.

well, we can make a little time for a quick cuddle but only if we are standing

My brother is busy as ever too.
He's working sooo hard on sitting and he really likes it

well, except when he falls but mommy doesn't take pictures of those....

He likes to check out all the places I like, like the front door. 
He's getting really strong too, look at those push ups!!!

Other times he likes to hang out with our Daddy.
They laugh a lot and Mommy says that he is definitely a Daddy's boy.

I hang out with my mom a lot
you know, to keep her out of trouble...

I "found" the toy box here and emptied it all out so we could see everything.

Mommy and Daddy think we have a lot of toys but 
there are still a couple of spots on the floor that are empty sooooo......

We really like being outside too. We especially love to watch the cars and trucks go by.

I also love wearing my hats. I am super cool
I don't even mind when it goes over my eyes.

Alex doesn't agree

As soon as Mommy puts it on

He just as quickly pulls it off

He even tries to help me get mine off.

He's pretty cool as far as brothers go....

Not only does he get to wear a really cool "hat" but now he's got
a cool design on his eye too. 

I try to borrow it from him but mommy doesn't like that.
Alex doesn't like it so much when I try to grab it either.

thats okay, I still like him
and either way Mommy says we have to keep him
...or maybe thats what she says to him about me. huh.

well anyway, I have to go but Mommy says I should mention that Alex went all night without needing extra oxygen lastnight. This is the first time in over three months he hasn't needed it so its a pretty big deal. She hopes that he won't need it at all from now on but they have to pay close attention to the oxygen machine for the next few nights to make sure he is doing okay without it. He'll be having an official over night oxygen study in a couple of days to be sure.

She also says that we have a busy week coming up. Alex will be seeing his orthopedic doctor and getting some xrays of his spine and hips. He will also be going to a special clinic where lots of doctors will be checking in on him to see how well he is doing. Mommy says he will be having bladder and kidney scans and will see his urologist, developmental pediatrician and therapists all in one day and that Alex will probably be very tired but hopefully it will all be good news. She says she will be sure to write a note to let everyone know at the end of the week how it all goes. ohhhhhhh, the kitty cat....gotta go....bye!!!