Welcome to our journey!

If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).

Friday, February 25, 2011

In his own time

Knowing how important it is to get started on early intervention for Jackson, I was so glad that we were finally able to have our appointment with Infants and Toddlers after a cancellation due to the weather.  I was surprised to wake up and find myself a little anxious about the appointment.  I think most of my tension was due to not knowing exactly what was going to happen at the appointment, but in all honesty, it was a strange experience and not one that I enjoyed. 

We arrived at our appointment a few minutes early and met with our case manager.  She went over the program with us and had us sign papers (lots of papers...she joked that we were buying a home).  Then the blitzkrieg began... as our case manager tried to hurry us along to the next room, I tried to quickly change Jackson and discovered he needed new clothing as well as a new diaper.  Once his emergency clothes were on, we went to the next room where a team of people sat just waiting to evaluate our little one (a speech therapist, physical therapist and developmental pediatrician, and a few others...don't remember their roles).  Jackson was placed on the floor and the firing squad began.  A one, a two, a two, a one... in between numbers, questions being asked of us and I couldn't stop that creeping feeling of being judged.  What answer are they looking for?  Where is this question leading?  As they scored our son, I just wanted to tell them, "He's perfect...leave him alone!"  They scored him when placed on his tummy after what felt like two seconds and I wanted to yell at them "he can do it, just give him a chance to!"  "How can you judge him based on only knowing him for a few minutes???" 

But if I'm going to be completely honest here, they were all very nice, they were there to help him and get him services that he may need.  Being an over-achiever, I've never liked being scored because I've always put a lot of pressure on myself to do well.  I have to remind myself that this is not reflective of our parenting or them viewing him negatively.  They are doing their job so that Jackson can be successful later on in life. 

So here are his scores (number is the month that he's presenting): 

1) Cognitive - 1 month
2) Communication - 1 month
3) Social or Emotional - 1 month
4) Adaptive - 2 month
5) Fine Motor - 2 month
6) Gross motor - 1 month

So the outcome of this evaluation?  Due to Jackson's condition, he is automatically eligible for the program.  He will be getting a physical therapist within the next month beginning with 8 sessions and a reevaluation in three months.  

Goals of physical therapy:
1) Normalize tone
2) Improve midline orientation (meaning he'll keep his head straight)
3) Lift head/chest in prone
4) Move in prone
5) Roll prone <--> supine
6) Prop sit when placed
7) Sit independently

Jackson will get there in his own time...and on a lighter note, check out his emergency outfit that day...

Medical update:  Blood work came back for his thyroid.  All is good!  TSH levels are down and thyroid hormone is up!  We will test again around four months!

That's all for now...gotta go work on some tummy time!

Sunday, February 20, 2011

No offense to Holland...

A few people have told me about this story that serves as a good analogy of explaining the initial shock of finding yourself the parent of a child with Down Syndrome:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. 

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley  1987

I felt the need to post this because tears were brought to my eyes when I checked out my favorite blog today from another mom who has a beautiful girl with Down Syndrome and saw this: 


So while Down Syndrome has made a little cocoon in our minds, it does not encapsulate our every thought and dream.  Each day we discover that Jackson is so much more than the fact that he has Down Syndrome.  So no offense to Emily Kingsley...but I'd like to think we are in Italy...we just decided to take the scenic route.  

Saturday, February 19, 2011

A Taste of Spring

Just a quick post today...Friday was one of those days where you can't help but be in a good mood.  The sky was blue, the sun was warm, and there was a great breeze that makes you hopeful for the spring to come.  Adam wrapped up his work for the day and we headed to the park.  This time Jackson was looking about and seemed to enjoy this brief pause in the winter weather. 
 It didn't matter that everything still looks brown and dead...the chill had left the air and we were excited to have some sun on our skin.   

 By the end of our walk, Jackson dozed off to take a quick cat nap when we headed back to the house.  Not being ready to call it a day, we set up on the back deck, wiped the grime off the table, brought the music out so we could enjoy the last hour or so of sunlight and warmth before heading in for the night. 

Today the winds outside are reminding us that winter is just not ready to leave us behind...so here's hoping for a speedy return to warm weather...

Friday, February 18, 2011

A Day in the Life of the "Single Parent"

Nursing, changing, napping...repeat...I survived!!!  Adam went away for his first trip since the little nugget arrived.  Not really sure who it was harder on, me or him, but we made it!

If it weren't for my crock pot, I don't think I would have eaten dinner that first night.  Perhaps Jackson sensed that someone was missing, but he required some extra snuggles before nodding off into dreamland.  I managed to eat my Hamburger Vegetable Soup without dribbling it over Jackson who watched me intently, patiently waiting for me to finish, just glad to be held.

So, in all honesty, it wasn't bad.  The biggest difference was the evenings, where I usually have an extra pair of hands to give me a break from changing diapers or taking turns holding Jackson so that the other person can actually eat dinner.  I have to admit, my diet took a beating though.  I've been trying to watch what I eat, but the last couple of days, it was whatever was quick and easy to  make (and a few sweets may have snuck in as well).

I'm glad that I got to experience the first trip while I was still home, however, I know that this will be nothing like when I'm back at work.  My biggest fear is the mornings where I need to get Jackson ready for day care and myself out the door to drop him off and make it to work by 7:10...but I have a few more weeks to worry about this until I find the reality of the situation right in my lap.

Jackson had another trip to the lab to get blood work done for his second-round of Thyroid screening. 
It's like he knew what was coming!
 I was shocked that he is now old enough to get blood drawn from his arm rather than heel sticks.  I held him while they put that rubber band thingy around his little arm to draw out his little veins...and I put on a brave face while they inserted the needle...and then I began to sweat as they struggled to get a vein and kept moving the needle around...ugh.  Poor thing was screaming away...I just wanted to whisk him away and yell at them to get a real professional to draw his blood!  So the right arm was a failure and they repeated the process with the left arm...thankfully this was a success and they were able to fill their vial.  Such a trooper!

Welcome home, Daddy!!!

So today Daddy is working from home and we hope to take a walk in the park to take advantage of this warm weather before winter temps sneak back on us and Daddy has to leave for his next trip tomorrow.  But now I have one trip under my belt, so I'm like an old pro already!  Nursing, changing, napping...repeat!

Tuesday, February 15, 2011

Love Day!

Let me first begin by sharing a picture that made me laugh..
I just love the contradiction between the book and video game...and in Adam's defense, I have Epic Mickey for the Wii down in the basement (not that it has gotten much playing time since I got it for Christmas). 

Ready for my Well Baby Appointment!

So Jackson had his 2 month Well-Baby appointment on Valentine's Day...he's up to 10lbs. 14 ounces and is 22 1/4" long.  He has moved from the 5th/10th percentile to the 20th/25th percentile (although he still has a small head - only 5th percentile...so he doesn't take after his Daddy on that one!).  For the most part, the visit was uneventful, which is good...means a healthy baby.  We have been instructed to rotate him when he's sleeping in his crib because his one side of his head is getting a little flat...but all-in-all he's doing great!  The big event - this was the multiple vaccine day.  Two shots in the thigh and one by mouth.  Man that boy can holler when he's unhappy.  Luckily the nurse was quick and efficient and once he got some snuggles from Mommy he was just fine.  The nurse warned me that he may develop a fever and/or may have an uncontrollable crying fit and/or may have problems feeding and then sent us on our way...

However, Jackson slept the entire way home and he ate just fine...And it was positively too nice to stay inside, so thinking it would be fantastic to take Jackson on a walk to Rite Aid to get some Tylenol Concentrated Infant Drops (just in case)...I strapped him back in his car seat and got the stroller moving...and good God...it was windy out.  Just when I was thinking that this was a horrible idea, Jackson started to drift off and I was determined to make it to Rite Aid and back. 

With just a few blocks to go, Jackson was not happy...I kept telling him that we were almost home and picked up the pace to get him inside and snuggle his worries away.  I have only used the stroller once before, but man, I folded it up like a pro and whipped him back into the house...only to have his cries get worse and the nurse's words of warning creeping in my brain.  Poor thing was just not happy...I got him to nurse, crying his way through his feeding and finally drifting off to sleep, whimpering here and there. 

Jackson then proceeded to sleep for the next 5 hours!  I felt his forehead and cheeks periodically, but his cheeks were cool and he seemed peaceful, resting off in dreamland.  Our little nugget probably would have slept longer if I hadn't scooped him off to bed at 9pm (he then slept till 6:30am)!
So here's hoping to a more normal day today.  And while Valentine's Day was very different from past years...we enjoyed a Chinese food dinner and tried to stay awake on the couch (don't worry, the parents went out Saturday night to celebrate).  Adam surprised me with a beautiful flower arrangement that got delivered to a house down our block and I received some packages due to some on-line shopping last week (a good reason to go back to work soon perhaps!). 

Beautiful bouquet!

My Treasure Necklace 

Not sure which package I was more excited about...my necklace, sweater saver, or cleaning solution to get rid of deodorant "pit stains".  Haha!

So that's all for now...hope everyone had a wonderful Valentine's Day and shared there love with someone whether it is a spouse, friend, or family member.  I feel so blessed to have two Valentines in my life now and am very grateful that I was able to snuggle with them both...my cup runneth over.

Love to all...

Jackson's First Valentine's Day card from Mommy and Daddy
Grandma and Grandpa Chwan's Valentine's gift to Jackson
"This Little Piggy" from Grammy and Poppo Bennett

Friday, February 11, 2011

Two months!

Two months!  Where does the time go?  Holy Moly!!!

Two months today!  Jackson's gift to me was sleeping for 7 hours last night!!!  Then he got up, had breakfast and spit up all over me.  But hey, I got 7 hours of sleep STRAIGHT!!! 

So because he's becoming a little man, I felt the need to put him in "little man clothes".  Also, gotta get him in the outfit before he grows out of it...hey, most days I keep him in onesies...I mean, if Mommy gets to stay comfy in her PJs then why can't Jackson (plus, less laundry for me). 

From this picture, I don't think he likes his "little man clothes"...in fact, he's already spit up on his sweater...

So its been a good month.  Jackson has been healthy, he seems like he's exactly where he needs to be physically...he's starting to smile...he's tracking things...he can lift his head for short periods of time...a good month!  Mommy and Daddy have actually had two nights out and have had great visits with family!

Jackson looks so tiny in cousin Eric's arms!!!

Looking adoringly at Aunt Holli and cousin Elli

We've spent the month grabbing onto little things...sweaters, fingers, rings...

You better watch out bug!!!

 And sometimes he wiggles around and bats at things so much that it makes him sleepy...

So where does the time go?  There is many a day that I feel like my house should be dust-free, clean as a whistle, spic n' span...but it usually is a good day if I get a load of laundry done and the dishes cleaned.  And I usually wonder if Adam wonders why he comes home to a house that looks just as chaotic as it did when he left...

So yesterday I told Jackson that we were going to hang out in the bedroom so I could finally clean out duffel bags from our weekend trip (four days ago) and put away laundry.

 But he hates the Boppy...this lasted about a minute before we aborted this for laying on his back...

But nope...he was not enjoying this...so we left the room a mess with laundry all over the place and bags still full and came downstairs to snuggle on the couch and that was exactly what we both needed...and you know what...the laundry can wait just a little bit longer. 

To be honest, I'd rather snuggle on the couch...who wouldn't.  And I'm going to continue each day to try to be productive because otherwise nothing will ever get done.  But I'm also going to try not to be hard on myself when the laundry doesn't get folded or the mail sorted and bills filed away (Ha! That never got done pre-baby anyways!). 

So that's all for now....so I have a few minutes to spare before Jackson will want to eat again.  I'm going to stare at his little face and wonder what he's dreaming about...the breakfast dishes can wait...