A Weekend of Firsts

Last weekend we headed to the NC mountains for a little much needed R & R ... just Robert, Jack, me and our dog Forest. It was such an incredibly relaxing weekend that we contemplated "playing hooky" from work and staying a few extra days, but we didn't (much due to my husband's good morals and not my own, I must say!). We had a view of Grandfather and Sugar Mountains with not another cabin in site, a private hot tub on the deck, and a cozy fireplace ... add some red wine and a big pot of chili to the mix, and we were in pure heaven!

It was a weekend full of firsts for Jack ... first mountain trip, first snow, first Christmas trees, first snow boots, first fireplace fire, and ... first RICE CEREAL!!!

"Oh Christmas Tree ... Oh Christmas Tree!"

Finally there!

The view of Grandfather Mountain from our cabin deck ... unbelievable

Getting ready for his first snow outing

Snuggling with Mommy to keep warm

Daddy and Jack

Not a happy face ... getting a little too cold for Jackie Bear

I love my family!

Our four-legged son Forest ... LOVING it!

Getting ready to go out to breakfast

Look at my cozy new boots!

Out to breakfast at Banner Elk Cafe


Getting ready to eat rice cereal ... for the FIRST time!

Here we go!

He wasn't sure about it at first

But he ended up loving it!

I was a little hesitant about feeding Jack solids for the first time, partly (and selfishly) because I just don't want him to grow up so fast and partly because I wanted to make sure he was really ready for it. But I knew he was definitely ready when he started seeming more interested in our food when Robert and I ate around him. He now watches us take the food from our plates to our mouths and sometimes even licks his lips. He'll also get a little fussy as if he's mad he can't eat what the "big people' are eating. So, we decided to give it a try!

The first rice cereal feeding went a lot better than I thought it would. It was certainly messy, but not like some of the stories I'd heard from other families. I was a little worried about Jack projecting the food from his mouth due to his tongue thrusting (common in many babies but moreso in those with Down Syndrome). He actually didn't thrust the food out with his tongue at all ... he just spit it out!!! It was really funny, and he really seemed to like the cereal, so I look forward to letting him try some veggies this week. I plan to try to make all my own baby food, so wish me luck!

Lions and Tigers and Bears ... Oh My!

Ok, so there weren't any lions or bears, and there was only one tiger, but it was still lots of fun!

Last week, Jack and I met some friends at the Natural Science Center for some fall fun! We met Laine and her little girl Ella (1 year old) and Sarah and her little boy Carson (almost 11 months). We found out that the center has FREE admission on the first Wednesday of every month, so we might have to make it a regular thing. We had lots of fun, and Jack really seemed to enjoy himself, especially seeing the animals outside (well, until he fell fast asleep). I used to visit the center as a child, but they have really made some improvements since the last time I was there. We feel so lucky to live less than 2 miles from this place! I have no doubt that Jack and I will be spending a lot of time there over the next few years. It's a wonderful place for kids to learn and be creative! Can't wait for more!!! Here are some photos from our visit:

Jack was very happy to be there.

We had to send this photo to Dad at work to let him know how much fun he was missing!

A little Mommy-Baby-Dino time!

Jack Bug

Ella Bug

Carson Bug

Our trusty tour guide ... slightly creepy!

Napping with some llamas

Jack's new buddy

(this turkey followed us the whole time as if trying to convince us not to eat him on Thanksgiving!)

Ella found a new friend too!

Eye Doctor

Jack had an appointment today with a pediatric opthalmologist, as suggested by our ENT doctor, because Down Syndrome children can more frequently have eye conditions such as nystagmus (small, involuntary, jerky movements of the eyes) and cataracts (cloudiness in the lens of the eyes). Jack did really, really well during the examination, even after he was given eye drops to dilate his pupils so that the doctor could better visualize his retina and optic nerve. Having your pupils dilated makes your eyes hypersensitive to sunlight and other bright lights (and even more so in people with lightly colored eyes like Jack), so I diligently kept him out of the sunlight and kept the lights dim in the house today. They said his eyes should be back to normal by tomorrow afternoon, but it hasn't seemed to bother him much at all today ... such a good baby! The office will usually give kids a cool pair of "shades" to wear after getting dilation to protect their eyes, but they said Jack probably wouldn't keep them on given his young age. I thought about asking them for a pair anyways, thinking they would make for some great photos to post for you all, but I didn't want to get looked at like I was some weirdo mom ...

It was really cute to watch a baby get an eye exam! I had these fears that they would have to pry his eye open with a speculum of some sort to examine him (which I had heard is what they have to do to babies in the NICU and which I was not prepared to handle), but it was much, much easier. All the doctor did was just hold up a fun toy that lit up so that Jack would look at it while he shined several opthalmoscopes in his eyes from a distance ... piece of cake!

We were very happy to hear that Jack's vision looks great and there are no signs of nystagmus, lazy eye, or cataracts. The doctor did say, however, that Jack has astigmatism in both eyes, which is common in Down Syndrome, but it also runs in my family (my mom, myself, and I believe both my sisters have astigmatism in one or both eyes). According to my amateur research, about 30% of pre-school children with Down Syndrome have astigmatism. For those of you scratching your heads, astigmatism is an eye disorder in which the cornea (clear tissue covering the front of the eye) is irregularly shaped, which can cause out-of-focus vision. This, in addition to my nearsightedness, is why I have to wear contacts or glasses. Jack's doctor said not to worry about it now and that it is not typical practice to prescribe eyeglasses to correct astigmatism in babies as young as Jack. He may or may not need them in the future. (How cute would little Jack be in glasses though?!?!) Regardless, we're glad he doesn't need any intervention this early in the game.

Jack's eyes also sometimes get red and a little runny with what my family always called "sleepy" in his eyes, particularly in the mornings or after naps. We mentioned this to the doctor, and he said it could possibly be from blocked lacrimal (tear) glands, which is also common in Down Syndrome children, but not anything to be really concerned about. He taught us a technique called "lacrimal massage" to help open any obstructions in the glands and told us that it should clear up by age 12 months. Again, Jack's eyes really don't do this very often, so we're not even sure it's really from blocked tear ducts, but we thought we'd mention it, given we were at the eye doctor and all.

So, I just thought I'd give you all a quick update on Jack ... or at least excite you all with a brief opthalmic lecture before bed! Hope you can sleep after all that excitement ... and feel free to call if you ever have any questions about eye health! ;)

Jack's Christening

Several family and friends have been asking for photos of Jack's christening, which was on October 24th. Here they are. It was a beautiful day!

Beautiful gifts from the church

Kuhns family christening gown that Jack wore (made from his great-great-great-great grandmother's wedding dress!)

Happy Halloween!

A little baby giraffe just wanted to wish everyone a very happy and safe Halloween!

Mommy's sweet baby giraffe

"31 for 21" mission complete! Can't believe I made it ... 31 (actually 32, I think) blogs in 31 days. Whew!!! Don't worry, fans, I will still be blogging as much as possible ... it just might not be everyday from here on out. Thanks again to all my followers for their support!

Being "There"

I know that I have mentioned over and over how I wish I'd known when Jack was born what I know now, but I find myself being reminded of this daily.

Today we celebrated our friends' little girl Ella's first birthday at a wonderful party (way to go, Laine ... awesome time!). It was a day full of friends, fun and laughter. A friend of ours who we haven't seen much of since Jack's birth came up to Robert, Jack, and I and asked us if he could talk to us for a minute. We said sure, of course, and he went on to tell us about how when he first heard about Jack's birth and diagnosis, he called upon an old friend of his who had four boys, two typical children, one with Down Syndrome and one with Autism. He called upon this friend to ask him advice in terms of what to say or do for us because of Jack's diagnosis. His friend told him that out of all four of his children, if he had to choose only one to have he would choose his son with Down Syndrome. I thought this was an amazing thing to say, and I of course started tearing up upon hearing this. Our friend quickly said, "I'm sorry, I didn't mean to make you sad." I quickly corrected him, explaining that I was not tearful because I was sad, but that I understood what his friend meant when he said this about his special son and about how happy I was to finally and truly be "there."

I loved reading the book Gifts so much that I grabbed the book Gifts 2 as quickly as I could, and I think this story from the most recent Gifts (by Amy Armstrong about her daughter Larkin) reiterates the feelings we go through as moms of children with special needs and the journey (tough but very necessary) we must walk in finding true acceptance. It defines how, no matter how hard it is to find our way sometimes, we do eventually get there ... to this wonderfully new and better balanced life.

"I found myself standing in new shoes that didn't fit, and suffered terrible growing pains from trying to walk in them. My raw emotions became blisters that wouldn't heal.

I continued to wear the shoes, though, because I didn't have a choice. Eventually my blisters gently healed into tender spots. And over time, I found the shoes balanced me and kept me grounded. One morning, Larkin was in my arms drinking her bottle, and I relaxed into the moment and locked eyes with her. The pure love in her eyes flooded over me. I realized I needed to have that very same look in my eye. When I look at people, I need to have the same open, loving, nonjudgmental gaze. And I began to cry with that knowledge."

I loved the moment she describes here with her Larkin because it reminds me so much of the first time I had that pivotal moment with my Jack. These children have so much to teach us about acceptance and love for others, and I absolutely can't wait for our journey ahead.

Thanks for reading, and have a wonderful weekend everyone!

"Jack" of all trades

Such a sweet face

Working out with Daddy

Such a hard worker

Ci Ci's dog Brinkley cheering Jack on

Mommy, it's a little early in the morning for therapy ... don't ya think?

being Jack

Trying so hard!

Happy little pumpkin

Sitting up like a big boy on the couch

Uh oh! Going ...

Going ...


Gone!

Oh well! I'll just roll over!

In the past month, Jack has really blossomed socially and physically. He has always been a really social baby, following people with his eyes when he was as young as 3 weeks old and smiling at only 5 or 6 weeks. Now though, Jack just smiles and giggles at everything ... you don't even really have to try! It's too cute!

Since starting weekly PT, our baby has become a "Jack" of all trades! He's rolling over now, more from back to front than front to back (which is weird because he rolled from front to back first). Every morning now after putting him to sleep on his back, we find him either on his side or belly in his crib. Such a big boy! We've also been working on his core strength with hopes of him sitting soon. Our PT showed us several activities to do with him to strengthen his core (some are shown in photos above), and his core already seems very strong, especially for a child with low muscle tone, she says. Our PT also compliments Jack's straight posture while in the supported sitting position and his ability to already pivot towards a toy while on his belly, which is apparently more like a 6 month skill. Go buddy! Keep it up!