Sunday, June 24, 2012

What an Amazing Year

Happy Birthday to my handsome, charming, intelligent, creative, snuggly and loving little boy!

I've watched it approaching though it was stealthy for a while. A slow change has been creeping upon Levi in the last 6 weeks or so. His pursuit of understanding in his play - his posture - his appearance... he is moving further away from true infancy and is getting a whole lot closer to toddlerhood.

This birthday has dredged up a whole lot of emotions which I thought had been dealt with or solidly buried. I can honestly say I've never cried over my child's birthday before. It brings back memories from last year and all the worry and grief that came along with Levi's surprise diagnosis. I find myself walking a line between wanting to interact with Levi like he has no different-ability and wishing for more time to push extra therapies into his schedule. It's hard... but then, many say that nothing worth doing is ever easy.

Like (on to a lighter topic) party planning... I spent several weeks prepping for the big celebration, choosing just the right theme and accessories. In the end, I chose a monkey theme with bright colors because I feel it reflected the joy and fun of his personality.

I have a love of baking and decorating the birthday cakes for my kids, with the exception of the ones for the first birthdays. This year, I felt compelled to do it myself and fell in love with a building block cake design. It took two days and approximately 7 hours of time in the kitchen, but I managed a level of success with which I was happy! The result was this:

My geometrical shapes weren't perfect - but overall, I was impressed with my first try at this design. The big cake was for guests - the little cakes were for Levi to smash (A) at the party and (B) at his birthday photos tomorrow. It went over well... you can see how much he enjoyed his cake! He dug right in without any hesitation...

He wore himself out a bit and needed a short rest...

And once he devoured (smeared) most of it, he yelled for more!

Once he recovered from the wipe-down, which he despised, by the way - he was content to drift off into a post-sugar-high coma in the arms of a good friend. After he recovered his wits, he returned home to open a few gifts before heading to bed for the end of his first day as a one year old!

Sure, it looks like he's asleep - but he's actually fascinated by the all the cool puzzles he received (to help him work on his fine motor and cognition skills)

Notice the cat, providing assistance in the "unpackaging" department? It's her calling in life...

He also enjoyed reading (and tasting) a multitude of birthday cards... several of which noted donations to our local Down syndrome association in his name. Very thoughtful of our friends and family...

All in all, it was a wonderful birthday celebration. There were people we'd invited who weren't able to attend and we missed them, but some great friends were able to celebrate with us and that means the world to us!

Levi is able to do so many wonderful things, I couldn't possibly list them all. To name just a few, he can pull to a stand from a 90-90 sit. He can get into a kneeling position while holding on to a higher surface. (like peeking over the edge of the toybox). He can get Mom's attention by yelling for her to look at him. He recognizes several signs for things like, "eat", "milk" and "all done." But he tops the list with being able to capture the hearts of all who take the time to know him... He is a sweet, sweet, little baby who is growing into a little boy right in front of my eyes.

This past year has flown by in an instant and my experience tells me that he'll be two before I can fully comprehend it. He'll be walking and communicating (talking or otherwise) and surprising us more and more with all that he can do with our faith, love and perserverance.

Levi has had a rough couple of weeks because of his teeth that are ready to break through the gums. They've caused him a ton of pain and difficulty eating and drinking. As such, he lost almost 2 pounds in the last 3 weeks but somehow managed to grow almost an inch longer during that time. That probably didn't feel so great either...

So one year after an expeditious delivery into my arms, Levi has gained 9 1/2 inches in length and almost 12 pounds. And his head has grown by 4 1/2 inches too! That's a lot of work for such a little guy...

Length: 29 inches (~24th percentile)
Weight: 20 pounds, 6 ounces (~15th percentile)
Head Circumference: 17.75 inches (~18th percentile)

He's wearing a size 4 shoe and has adorable footprints, just like his siblings. He's filling out a 12 month outfit and was close to moving into size 18 months in some items. With his recent weight loss, that may be delayed a bit, but it's still not far off...  His beautiful blue eyes are clearly going to stay blue, just like his siblings. I had hopes that at least one of the kids would have green eyes like their mom, but I get to look at five sets of baby blues (hubby's included) each and every day! His hair is definitely darker than it was when he was born and has just the tiniest hint of a reddish hue in the sunlight. I would describe it as being a combination of light brown which graces Evan's head with a bit of the coppery red afforded to Katelyn and Trevor.

He is beautiful and snuggly and perfect and I dream of great things for him - love, life and the pursuit of happiness. Just like us all...

Happy First Birthday, Levi Jacob.

Friday, June 15, 2012

So So Close...

One week to go until Levi's birthday! Aaaagh - It's so exciting and stressful all at once. But I can't even focus on that yet because he has been horribly ill (on the inside) all week. No sneezing or coughing or runny nose or anything obvious (hence the "on the inside" comment). But he hasn't eaten any food for six days and is barely taking any liquids either. He's been to the doctor who pronounced him laden with viral infection but wasn't overly concerned about it as his lungs and ears were good. Rest, pedialyte and time were the recommended treatments.

It was either this...

or this, pretty much all week long.

He's spent most of his days sleeping and is clearly exhausted when he is awake. He only wants to be held up on mom's shoulder and cries if you try to put him down anywhere. Thankfully today seemed like he might not be quite as sick as before. He drank more liquids than he has in days (though still not much) and was interested in playing with a few toys once he was medicated enough to be able to breathe.

recovering from his sick-day photo shoot

All my fingers and toes are crossed that he seems improved tomorrow because otherwise, there's another visit to the doctor's office in his future! Well actually - there are more appointments in his future regardless because last week, he went to see a pediatric gastroenterologist to rule out complications from his GERD. He's been referred for blood tests, an upper GI xray series, a barium enema and a gastric emptying profile. And his Prilosec has been doubled to 2 doses per day.

On to happier thoughts...

This weekend is Levi's first Father's Day! He has participated in putting together a super-cute memento as a present for hubby. I'm certain he's going to love it and I look forward to sharing it here once he receives it!

how many years do I have to wait for them to all look up at the same time?

Birthday party fun is slowly coming together. It looks like we'll have about 35 guests, which means that I've got to get crackin on my cake design and finalize plans for the menu. I have all the table supplies and balloons. I can't wait to put it all together and see the final result!

I definitely have mixed emotions about my baby growing up. I'm very excited to see what next year brings and in some ways will be happy to see this very tumultuous one end... BUT my baby is getting so big and I'm afraid the days of cuddles and snuggles are soon to be gone. I will hold on to them as long as I can, while still being the pushy mama bird trying to make her fledging grow!

Saving more details for next week's monthly update, time for pics and stats...

UPDATE: Back to the doctor on Saturday and yup, he's got an ear infection in the left ear. Antibiotics are our friends and so hopefully by the end of Father's Day, he'll be feeling a WHOLE lot better!

Weight: 20 pounds, 10 ounces (down about a pound from previous measurements)
Length: 29 inches (I measured this about a bajillion times - I'm certain this is very accurate though I'm hugely surprised because he hasn't grown at all for several months - I especially wasn't expecting it while he's ill)

Finding some energy to play today

am I about to cry? maybe - let me think about it for a second! don't rush me...

even the favorite spinny toy just isn't as exciting when you'd like to be lying comatose on your face instead

Wednesday, June 13, 2012

A Revelation & Some Photos

I watched a video several days ago which was shared by the Disability Scoop. It was of a boy with cerebral palsy running a race during his school's field day. He experienced a wonderful show of support by his schoolmates. I cried almost through the whole video...

I wanted to post it here, though not specifically Ds related because it really triggered a revelation for me. As recently as a few months ago, I worried about the things that Levi might not get to do or experience. Lately I've been worrying less about whether he'll be able to do many things and more about how he'll feel attempting those things. You see, I am a perfectionist. Sometimes those tendencies are helpful in seeing a project through to completion and getting the job done right. Sometimes it's hindering because I often turn away from challenges which I perceive as too difficult to complete perfectly. I don't want to be disappointed in myself for "failing."

Seeing this last week really made me realize that my perfectionistic tendencies have been influencing the way I've perceived the possibilities for Levi. It equates to "I feel sad because Levi certainly won't want to run a race against his typical peers because there's no way he'll win." This may not be the best example - I'm not saying Ds has affected Levi in some way which will prevent him from running quickly - it's just an example. In any case. This video showed me that Levi doesn't have to feel the same way I do about challenges - in fact, in many ways - I hope he doesn't. I hope he strives to overcome challenges which he perceives as difficult. I would be more proud of him for that than winning first place in a race any day!

So here's the video - I hope you enjoy it as I did...

And because I've been slacking in my blogging (and will probably continue to be over the summer as we'll spend very little time indoors), here's a few adorable pics from the last few weeks. I was hoping my weekly updates on Levi would make it until he turned one, but I'm so swamped with appointments and planning this month that I strongly suspect his birthday post will be the next one to arrive. So until then...

Learning to Hold His Own Bottle