Christmas...2009

Julie: "Santa has arrived!" John: Who's Santa? Julie: "The guy who left us all this cool stuff!" John: "Oh. I really like the paper. It's great for tearing up and waving around." Julie: "Oh John..."

I could really use a nap.

Mmwah! Kisses to all. Oh yeah, Christ is Born, Glorify Him!

My favorite toy so far...Littlest pet shop rules.

I'm playing the part of an angel again, but I really wanted to be Mary.

The Clauses and the Melniks

Christmas eve day... Baking.

Daddy & Juliana helping Mommy put the hard gingerbread cookies out to cool.

Juliana admiring her handiwork!

                                      Mmm...Samples~Yum!

Tests...

Well John is slowly mending from what seems to be a cold virus in the liver. Blood test levels are returning to normal. John is still not sleeping well. Daddy held him all night last night. Still cramping up in waves at bedtime. Fever and nausea have passed. Will keep everyone updated.

Trying to schedule the MRCP to determine if he has a cyst in his common bile duct. Waiting for results of his other bloodtests.

All is as well as can be. We will be celebrating the birth of Christ soon!

My notes from yesterday...

Possible Choledochal cyst ( 6 mm swelling in common bile duct)

Need MRCP (MRI specialized) under sedation to determine if cyst exists or not.

Check hernia w/surgeons

Lactulose for constipation. (still going to discuss w/ physician) John is going every other day to every day, not sure why we need this.

Full panel of blood work was drawn  yesterday including a screening for Celiac disease (this will take apprx. 3 wks to get results.)

Current nausea/sleepiness/stomach pain issues due to virus, not related to underlying problem

Original Liver/ blood work test results were normal for his age/ #s were not converted/adjusted to John's age.

Possible cyst in bile duct. If present, it will have to be removed.

We had a very long day yesterday, & a long night. John threw up on me during the night & had the dry heaves w/a slight fever. Fever is gone now & he has eaten his first ice pop this morning & is resting.

Will update as I get more results. Sorry, no fun photos. today. :(

~Susan

Therapy tools? Hmmm...

 

OK, we spent how much on therapy tools and cups etc.? This is what John likes to eat with at our house. (Oh and the unapproved sippy cup you saw in the video). He sees a Chinese soup spoon and he goes nuts. I offer broccoli from his special fork and he turns away. Offer the same piece of broccoli from a pair of chopsticks and he opens wide.I mean, what child, unless he is Asian, asks to eat mung bean & rice soup w/ vinegar & maggi in it? Mine. I think it may have something to do with us visiting China while I was pregnant with John. He got to taste 2 weeks worth of authentic Chinese food & now that's what he expects. At least we cook it and it's healthy food in our home. Oh, and NO leftovers!Will try to post Mung bean congee recipe later.

Until next time, Zaijian!

We all slept in...

We all slept in. I only heard one peep out of John at 4:10 AM and then everyone slept until around 5:45! Yes, sad, 5:45 AM is sleeping in at the Melnik house! But I was able to get 7 hrs sleep. That's a record for the past 3 months, I think. And John is having a morning nap. Is the sky falling? Is that a pig flying? No, just things being a little more "normal".

Appt. next week...

~G.I. appt. next week... Hope we figure it all out!

Long week...& it's Monday!

It's already been a long week and it's just Monday.Ultrasounds after the enema incident revealed an enlarged liver. Follow-up blood tests revealed an elevated GGTP. Now we are awaiting an appt. w/the G.I. specialists at A.I. du Pont to figure out what all this means for John. Say a prayer for us and if you have any info. on this subject, please comment.

Man With Down Syndrome Becomes Eagle Scout

wow!

John plays with toy, watches TV

John and Julie play!

hey you!

Hey to you!

The Teachings of Jon

 Really great movie, check it out! Click on above title to see YouTube clip.

The Teachings of Jon

Director Jennifer Owensby's film profiles her brother Jon, a North Carolina man with Down syndrome, who spent the first seven years of his life in a care facility. Included: archival clips of Jon moving out of the facility to return to his family's home, images of his daily routine, and shots of him at work in a vocational center.

Tuesday, November 24 -- 8:00pm

23.2 - NJN2

duration: 60 min

details: [CC] [STEREO]

Big Sister's Love!

I think this is my favorite photo of John & Juliana.

Both of their expressions are so peaceful.

Big Sister's Love

Brother John was born & I love him so. I always want to know if he loves me too... But Mama says she knows he loves me. And she says he loves me more then I can know. And this is how she can tell...When I come in the room, his eyes light up & twinkle~his mouth curls up with a little dimple~ & giggles spill out so quiet & gentle. Mama says it is all very simple~

it is because of his Big Sister's Love...

Yesterday was different!

Ok, an enema 6 AM at A.I. du Pont children's hospital (emergency) was not my way to start the day yesterday, but that's the way it was. Nobody was happy. Mom says I have to cut back on the pizza! I'm feeling much better today.

Julie was really worried, but Daddy got to take her to school & she thought that was pretty cool.

So Mom has to change John's diet again. Hoping we were finished with Mr. Constipation, but alas he has showed up uninvited once again. Oh Pooh!

You've got to shake it!

John likes to shake it!

For some reason his Aunt Tammy's old maraca (sp.)? is John's favorite toy. He even took it to the Dr.'s office w/ him Friday. He carries it in his right hand. Don't even think about taking it! Ask Daddy what happens if you take it w/o permission.

OK, this is a trick, Mommy wants to Blog & John is already finished napping! Time for a walk.

Looking to find Orthodox Christians to share DS birth stories...

I'm looking for Orthodox Christians that have a child w/ Down syndrome to share their birth stories/stories. If you know someone who would like to share their story, please give them my info. or direct them to this blog. I would love to get a group together on the internet and have a community to share our experiences.

PIZZA! Chew, chew, chew...

Mmm, PIZZA. Chew, chew, chew...

We just love it. John ate an entire piece by himself and was looking for more!

15 month check-up for master John today...

 John is:
         18.3 lbs. ~25% (on the DS chart)
          28 1/4"  ~23%       "           "
          43 head circumference ~40%

Master John had dose #1 of H1N1 today and his 2nd dose of the regular flu vaccine. Hope it helps him. They may or may not get the 2nd H1N1 vaccine for him. The rest of us are waiting since we aren't in the special needs category. Miss Julie is signed up at school. Miss Juliana spent her day off from school at her Baba's today. We are awaiting her arrival any minute now!

I was really wanting something more then just 3 cheerios Mom. I thought Friday was PIZZA night.

I'm singing for my supper.

Stay tuned for pizza photos later.

John loves pizza! Our little rat likes the cheese.

St. John Maximovich of San Francisco & Shanghai

 This icon was handwritten (painted) for John and given to him on his Baptismal day. Wiki info. link.

Chocolate?

           John says, "Julie, what have you been eating? Chocolate?

Mmm... Mommmmm!!!!!

3:30 AM?

Having a hard time this week. John insists that he gets up at 3:30 AM no matter what time I put him to bed! Yesterdays Renshen Oolong (Ginsing) flavored tea wasn't even enough to keep me going. Now it's almost time for PT and guess who wants a nap!

The Red Thread~

Lucy Kaplansky
http://s0.ilike.com/play#Lucy+Kaplansky:The+Red+Thread:887191:m10154461 The Red Thread (2004)

Jasmine Tea~

Jasmine tea is so uplifting. I usually don't drink it in the morning, but today I did. It has green undertones and a beautifully sweet scent. The flavor is like drinking in the Springtime air. I really like the Jasmine pearl balls. The quality seems to be higher then the loose pieces.

Well Juliana was not sick yesterday, but she had a nice rest. John on the other hand is not liking the time change at all. Very restless last night & quite grumpy today. Didn't want to do his OT today and that is usually his favorite! Hopefully this nap will restore him to his usual joyful state of being!

Life Goes On...

Well life goes on. Sat down with this great green cup of tea from our dear friend Jessica in Beijing only to be interrupted by the ringing of the phone.

Was waiting for John's SLP to arrive. It was his year evaluation today. Thought it was his therapist, but it was the school nurse telling me to come get my daughter who had a stomach ache. No swine flu, just little kid tummy trouble. So John had his eval., but no therapy today.

Back to the tea. Do not know the name of the tea, but it has a great floral taste with a hint of smokiness to it. Very fresh and invigorating. Container is in photo. I can't read the characters yet, so no info. on this one.

Left over stuffed cabbages today from Baba, so no recipes to post. Maybe tomorrow! Off to read Choosing Naia.

Choosing Naia: A family's journey, Zuckoff, Mitchell. Boston: Beacon Press, 2002
A powerful story based on an award-winning series of newspaper articles first published in the Boston Globe, about a young couple whose first child is diagnosed with a significant heart anomaly and with Down syndrome. The book traces their emotional and intellectual journey through making a decision to continue the pregnancy, and the first months of baby Naia's life.

Time for tea w/me...

Sunday at church always begins the week in the Melnik house. Prayers, beautiful singing, candles, & the community of worship with friends and family.

While blogging away I've been sipping an almost chocolatey, smokey, chestnut colored rou gui oolong direct from China via my husband Vlad. I'm very spoiled in the department of cha (tea).

Must pause to provide comfort & nourishment...