Wednesday, March 31, 2010

Otis the patchwork pup

No wonder he's ashamed to go out in public! He insists on taking his walks at night, when darkness can mask his embarassment.

I actually had to trick him to get him to look at the camera. He kept trying to look away and hide his face when the camera came out. He kept mouthing something... sort of looked like he was trying to say "not that damn blog again..."

He has asked us to look into getting a prescription for doggie Rogaine. We are doing our best to oblige. In the meantime, I'll keep slathering his behind with SPF 50 when he goes out in the sun.

Monday, March 29, 2010

A basketball reference

I've been getting a lot of questions recently on the size of my belly. In honor of the NCAA Division I basketball championship in Indianapolis this coming weekend, I thought the best way to show off my ever-growing baby belly was to compare it to an officially sanctioned NCAA basketball.

I am clearly straining to palm this basketball for the photo. Can you imagine how HUGE Cart is going to be?!?!

Sunday, March 28, 2010

Slightly less drama

Nate and I have a lot of practice cutting the boys' hair. It started as little trims when they had shunt revision surgery and we wanted their hair to be a little bit more even - they were much littler then and didn't seem to mind the trim. Recently, it has become a two-parent, knock down, drag out event... and most of the time, three of us are in tears by the time everything is all said and done. When we're lucky, we haven't clipped an ear in the struggle...

Because I am out of commission when it comes to fighting kids and sitting on the floor, Nate opted to take the boys to one of those hair cut places that specializes in children's cuts for their spring mop chop. We were a bit nervous about how Will and Luke would do, but were hopeful. In recent weeks, we've seen our children be perfect, agreeable angels for photographers, only to turn into typical three year olds for us just moments later. So, our hope was that the same "oh, you're a stranger so I better behave" mentality would hold true for a stylist!

And for the most part, it did! Luke went first. He was a little nervous at first. But this is better than normal, because there was no kicking or screaming as we get during home hair cuts.

After a few minutes, the smart kids stylist gave Luke her spray bottle full of water. He made no sounds other than giggles for the remainder of his hair cut! Her apron and seat were soaked, but that is beside the point!

We weren't sure how Will was going to be able to get his hair cut at a salon, because he is unable to sit up in their seats. But thankfully, I married an engineer. He figured out that Will's Kid Kart seat could be taken off its base and placed safely in the stylist's seat. Although he was comfortably seated, he wasn't happy with what was happening to him.

Will typically cries during his hair cuts. I really don't think he likes the sound of scissors so close to his head. And although he cried for the stranger stylist, he still did pretty well - don't let the partial Old Man Face fool you.

So now we have kids with good hair cuts, less hair to clean up off the floor, and much less drama at home!

Friday, March 26, 2010

An evening's accomodation

During the day on Thursday, we celebrated being 36 weeks pregnant with Cart. My doctor was very happy with how I have been doing, and we left the hospital with a bedrest-approved hop in our step. One more week and we'll be full term at 37 weeks!

Unfortunately, as the afternoon wore on yesterday, I started having contractions. They were unlike the on and off contractions I have had for several weeks - they were occuring every couple of minutes. The doctor felt it was best that I come in and double check that I wasn't in labor.

Given my history, we don't want to take any chances. And even though Cart is thisclose to being full term, he isn't quite there yet. So Nate stayed home with the boys and I drove to UNC. A huge thank you to Crissy, Chris and Jenn, who were on-call for us in the case that Nate needed to join me at the hospital!

I was strapped in to a contraction and a fetal monitor. Cart was doing remarkably well despite my contractions coming regularly at 3-4 minutes. They monitored me for 4 hours - in a room without a TV! I was sad to hear from a nurse that Syracuse lost to Butler.

Thankfully, after about 4 hours, my contractions slowed to non-existent and I was not dilated. I was sent home with strict orders to continue bedrest, drink lots of fluids, and come back if anything changed. Damn Braxton-Hicks contractions... I felt kind of silly going in, only to be sent home... but of course it was the right thing to do. Plus I got to spend 4 hours listening to Cart's heartbeat, which was kind of cool.

I received my last progesterone shot last night. My thought is that as this coming week nears it end on Thursday April 1, this type of instance is going to become more the norm. As it stands now, we have a c-section scheduled for April 20... hopefully we get to that date!

Wednesday, March 24, 2010

'Rock n Roll' morning

This morning was very fun. William has been sleeping very well over the past couple days, as he is now fully recovered from his adenoid surgery - he can finally go back to sleeping on his belly! So he slept extremely soundly on his belly last night. And when William sleeps well, we ALL sleep well. Hence the good morning today.

Around 7a this morning, Nate set up his iPod with Guns n Roses and we all rocked to 'Paradise City' and 'Sweet Child of Mine' while getting the boys ready for school. They both enjoyed the music and were especially excited when Nate pulled out some new t-shirts that he got for the boys.

I think that the t-shirts rounded out a great morning. I am not quite sure of what Luke's teachers are going to think of his shirt, but hey, you gotta do what you gotta do to keep the family happy right? Next we'll get Luke a bandana and teach him how to sway like Axl Rose and teach Will how to play guitar like Slash just to round out the look (without the obligatory cigarette, of course)...

Tuesday, March 23, 2010

The hobble to recovery

It has now been 8 weeks since Otis' knee/tendon replacement surgery. He is walking around regularly these days, and his fur has almost returned. But we were still seeing him hold up his leg to go up and down stairs, and he wasn't comfortable running. He didn't whine like he was in pain, however he was showing some serious lameness in the leg. At 8 weeks post-op, he should have been back to 100%.

He went in for a checkup, where they did x-rays of the knee. To the orthopedic surgeon's surprise, one of the screws that she used to attach a metal plate to Otis' bone went through the first bone and into the second bone of his lower leg. It was only supposed to go through the first bone. And because these two bones typically operate independently of each other, them being held together by a screw was probably pretty painful for Otis. Ouch, poor guy.

So Otis is going back to the vet tomorrow morning, and will be placed under general anesthesia so that the surgeon can remove the screw. Because Otis' bones are completely healed from surgery now, the screw isn't really required to stay in his leg.

They tell us that he'll be under anesthesia for less than an hour, and will be home tomorrow night. We shouldn't have the tough time with recovery like we had back in January! He should actually feel immediate relief where they remove the screw from his leg.

We just hope this time they don't go overboard with shaving his fur this time! He's finally willing to show himself in public again! Wish us luck tomorrow - we just want our pup to feel better and for this ordeal to be over.

Monday, March 22, 2010

Trouble incognito

The reason why toddlers, temper tantrums, and tempera paint don't mix! Thank goodness the paint is non-toxic. Luke got really angry when I took this picture of him, but how could I resist?

Wednesday, March 17, 2010

Shades of green

Happy St. Patrick's Day! I hope all of you able bodied folks out there will drink a pint of Guinness for me.

Aside from wearing green today, we did little to celebrate everyone's favorite Irish holiday (side note: is it a holiday?). We thought about stealing an idea from a friend, wherein they made green eggs (scrambled eggs with green food coloring) and ham (not green) for their kids to celebrate. However, that idea was squashed when Nate picked up Luke today and the first words out of his teacher's mouth were "I am sorry if his poop is green."

Now, its not everyday that someone says those words to you.

She went on to explain that in celebration of St. Patty's day, they ate only green things today. She didn't mean that they ate spinach, broccoli, and peas. She meant that they ate only things that had been dyed green, like vanilla pudding, applesauce and milk! I figured that by dinner time, Luke would probably run the other way if he saw another green food. We opted for pizza... how un-Irish of us.

I suppose we could have tried something actually Irish, like corned beef and cabbage. But I hate corned beef, and I've always been told that cabbage and pregnant ladies don't mix. And since my palate rules the epicurean roost these days, we kept it simple and gastronomically friendly. To me. And Cart.

So here's a photo of our family in all of our green clothed glory. I realized today how tough it is to match shades of green... so we had quite the kaleidoscope on the couch!

Tuesday, March 16, 2010

Adenoidectomy update

Will and Nate left for the hospital. Will was in a good mood, but he was a hungry little boy! Because he'll be undergoing general anesthesia today for his adenoidectomy, we had to stop his overnight feeding pump at 4a. It usually runs until 6a, and then he gets a feed by mouth around 8:30a each morning. So lets hope that the surgery team is running ahead of schedule today, for both Will and Nate's sake! Nate needs to check Will in around 9:45a today, then he'll have a meeting with the ENT and the anesthesiologist, and Will will go into the OR around 11:45a.

Good news! The surgery team IS running ahead of schedule today! Nate just called to tell me that they had already met with the ENT and the anesthesiologist, and had already taken Will back to prep him for surgery. A full hour ahead of schedule - amazing! As long as they are only doing the adenoid removal, the whole procedure should last less than 45 minutes. If the tonsils look like they need to come out, then the procedure would last longer.

Will's surgery is already complete! This is really unbelievable - Nate and I are so used to shunt and g-tube surgeries, which last for a couple of hours. This was like no time at all.

The ENT said that they removed only Will's adenoids (no tonsils). He did indicate that Will's adenoids were very large, which really explains why he's been having the sinus draining issues that he's been having. He also took some cultures from Will's sinuses and nasal cavities to determine if he's harboring some kind of resistent bacteria in there.

So Nate hasn't been able to see Will yet, but once they have him all set up in recovery, Nate will stay with him while he wakes up. They told us to expect 1-2 hours in recovery before they are discharged. They could be home by 1p or 2p this afternoon!

They're home! Will is uncomfortable - to be expected at this point. We gave him a dose of Tylenol and a couple of ounces of Pediasure through his g-tube to quiet his grumbly tummy. He's content now to lay in his bed and suck on his pacifier. Hopefully he'll nod off soon! Its really cute though, with Will quietly resting in his bed and Nate fast asleep in Luke's bed!

Will took a good nap and is now playing with a toy in his wheelchair! Aside from a couple of intermittent whines, he seems to be doing very well! Yay! What a trooper.

Sunday, March 14, 2010

The big reveal

No, Cart has not arrived. No, we aren't about to spill the beans on his name. So what, you ask, is this big reveal?!

Well, as we mentioned last week, the boys were to receive new twin sized beds for their birthday in advance of brother Cart's arrival. With the help of some generous great-, grand-, and god-parents, we made the purchase on Friday while the boys were at school. Nate took the afternoon to set the beds up. He was very excited about the surprise for the boys!

After dinner, Nate brought the boys upstairs to get ready for bed. I was waiting in their new room with camera at attention to capture the moment. Luke was kind of in disbelief for a moment, until he crawled into his bed and realized he could now reach the window blinds, lamp, and clock! Will enjoyed wiggling and kicking around in his bed.

It was a fun moment for us, because up until now, the boys really haven't been into gifts and surprises. This was the first time that there was a genuine look of shock on their faces, followed by a look of excitement!

Will has taken to his big boy bed like a fish to water. He's had no issues falling asleep in it, and Nate enjoys that he can now snuggle into Will's bed to wake him up after nap time. That kid beams the biggest smile when he is nose to nose with Daddy!

Luke's having a hard time controlling himself with this new found freedom. In his crib and even his toddler bed, he fell asleep easily and never seemed to get out to play when it was time to sleep. For the past two days, he hasn't been able to nap in his new bed because he just cannot be still! Getting him to sleep Friday and Saturday nights was a bit of a challenge. Thankfully this evening, the novelty has worn off just enough to allow him to sleep quickly and soundly in his new bed!

On a separate note, Will is slated to have his adenoids removed on Tuesday of this week! Though you might feel bad for him to undergo another surgery, this one is going to be a great thing for him. The frequency and severity of congestion that he gets on a regular basis right now really impacts his life, and despite the amount to which we joke about it, he does not enjoy gagging and vomiting on mucus! The procedure is quick and out-patient. Please wish our little trooper luck!

Thursday, March 11, 2010

Little big boys

We celebrated Will and Luke's 3rd birthday today! We got them both cakes to take to school to enjoy with their classes and teachers. Luke made it to school and had a great time (see pic below). Unfortunately Will was getting over a virus and had to stay home today. We're hoping that he's back to himself tomorrow and can go to school and share cake with his friends.

Once everyone was together at home, we had burritos for dinner (Luke's favorite), and then got down to business with cake. Unlike last year, I did not make this year's cake due to bedrest. But it was cute and tasty nonetheless! Before we could start, Nate gave the boys a primer on how to blow out the candle!

For those of you in attendance at the boys' first birthday party, you will remember that Luke puked up his cake immediately. It wasn't pretty. Let's just say that the boy is making up for lost time! He couldn't get enough cake. When he didn't want to use his fork, he put his face right in his cake to take a bite.

Though Will cannot really tolerate eating cake yet, he did get in on the action with the Elmo and Big Bird cars that graced the top of the cake

And once Nate and Luke cut their pieces, I was able to enjoy some cake for me and Cart. Happy birthday, boys! You know how Mommy loves cake... definitely worth sitting up for a few minutes to enjoy!

Wednesday, March 10, 2010

Evaluation results and recommendations

Yesterday was our county pre-school services evaluation review meeting. It yielded some expected and some unexpected results.

As expected, Will was approved for services - placement will be in a full day multi-need classroom. Though we don't know the exact school placement yet, we do know that Will will be in a classroom with 3 teachers and 5-7 other children with multiple needs. He'll be picked up each day in the morning by school transportation, spend just under 7 hours at school working with teachers and therapists, and be dropped off at home by school transportation. We don't have an exact start date for this transition yet, but think this is going to be a wonderful step for Will. During the review yesterday, all of the evaluating therapists could talk about was how bright Will is and how they think he just needs the correct atmosphere to really push him to his full potential. We couldn't agree more!

The unexpected results were with Luke's evaluation. We were somewhat prepared for them to tell us that Luke did not qualify for services. But what they told us is that they found that Luke still has some developmental delays, particularly in the areas of speech and language comprehension. They recommended him for a partial day, developmental delay program. So for 10 hours a week, Luke will go to a special needs pre-school program with a focus on language development, and will then be transported to his current day care center for the rest of the day. This came as a bit of a shock to us, but we want to address these gaps now so that Luke will be fully prepared for kindergarten in 2 years! We don't have his school placement yet, either, but know that Luke and Will are going to be at different schools at least for the next year.

We're happy to have the evaluation result meeting out of the way, and concentrating on the next step of finding the best fitting classrooms and teachers for the boys!

Happily, tomorrow, March 11 is the boys' 3rd birthday! We're planning on celebrating at home with an Elmo cake and some gifts. The boys are receiving twin sized beds for their big gift, as we need one of their cribs for brother Cart's impending arrival! How did 3 years pass so quickly?!?!

Monday, March 8, 2010


Sometimes I find that the most trivial things can remind me to slow down and take a look around. Will's physical therapist mentioned a couple of weeks ago that Will's current ankle braces (DAFOs) were getting a bit snug and he needed a new pair.

Will wears DAFOs daily to provide the proper alignment for his feet and ankles while in his equipment, but especially to disable him from pointing his toes. Will has spastic cerebral palsy, which means that his muscles are overly tight. When he gets excited or angry or is just trying to move his left hand, his whole body contracts strongly to enable the action. By disabling his feet from being a part of that overall contraction, we're trying to teach his brain to use local muscles for local movements, rather than have him continue to flex his whole body to move one appendage.

Will has had DAFOs since October 2008, when we first got his wheelchair and stander. He's gone through several pairs since that time. And while I shamefully didn't save the first pair of DAFOs, I did save his second pair (which were created in early February 2009).

The photo above is the comparison of Will's DAFOs, one year apart (the pair on the left is from February 2009, the pair on the right was fit to him late last month). For all the time I have spent worrying about him putting on weight and feeling like a failure every time he vomited or didn't feel like eating, I never stopped to admire that he was still growing. His feet and legs and height have all increased significantly in the past year. And it took a new pair of shoes to make me realize that we must be doing at least a couple things right.

Thursday, March 4, 2010

The meaning of 4 weeks

I got my first email account in 1995 (Compuserve, anyone?)... in the subsequent 15 years, I have gotten several thousand forwards. I'll admit that I am one of the people who deletes most forwards without even reading them. Sorry!

Its a rare occasion when I open a forward. But strangely, shortly after Will and Luke were born, I got a forward that talked about the meaning of time. I opened it, and though I didn't keep it, the forward still sticks in my head. Maybe you've seen it, its the one that discusses the meaning of decreasing units of time by relating them to a mother who has either had a premature infant or lost a child. If you want to know the meaning of a day, ask a mother who has...

Well if you want to know the meaning of 4 weeks, ask me!

Cart is now 33 weeks gestation. Woo hoo! Sometime between 33 and 34 weeks, baby lungs become fully developed. This means that if Cart were born in the next week, he would not need any breathing assistance.

Will and Luke were born at 29 weeks gestation. I know that 4 weeks doesn't seem like a long time. But the lung development that occurs in those 4 weeks is the difference between breathing assistance and the whole slew of risks associated with it, and breathing like a full term baby.

Considering a baby must be able to breathe on their own to be released from the NICU, entering the world already having that ability is a huge plus! To put it in perspective, a photo montage...

The boys had extreme difficulty breathing on their own when they were born. The photo above is 3-lb baby Luke at 4 days old. He was on a ventilator, which essentially breathed for him. Being on a ventilator for a long time can have a lot of negative side effects. Thankfully, by the end of the boys' second week of life (31 weeks gestation), they were moved off of the ventilator and on to...

CPAP - Continuous Positive Airway Pressure. Anyone with diagnosed sleep apnea has a much larger CPAP next to their bed. Anyway, the CPAP is one step closer to not needing any breathing assistance. With the continuous positive pressure, it basically was there to remind the boys to breathe. We were sad to be able to only see such a small portion of their face while they were on the CPAP, but happy that they were progressing. They were both on CPAP for about a week, or through 32 weeks gestation. Luke needed more breathing assistance than Will pretty regularly.

At 32 weeks gestation, we were told that the boys needed neurosurgery to put VP shunts in their brains. We thought that the surgery would be a step back from their recent breathing successes, but were so happy when Will returned from his shunt placement surgery with only nasal cannula in his nose! No more CPAP! We could see our beautiful boy! Nasal cannula provide a very small amount of oxygen and air pressure through the nose. Anytime anyone on TV is in the hospital, these are the tubes that you see in their noses.

Within a week of shunt surgery (33 weeks gestation), Will was breathing on his own 100% of the time! At Easter that year (early April - 34 weeks gestation), Luke was moved off of CPAP and put onto nasal cannula. Luke remained on nasal cannula for minor breathing assistance until 37 weeks gestation - he still needed that little bit of assistance to get him over the hump. But it is because he did continue to need this assistance that he has some lung issues today (see Our Own Winter Wallop post).

So, as you can see by this chronology, the ability for a baby to breathe on their own shortly after birth is a really big deal!! This is another big milestone for us!