Thirty-Seven Weeks Together

We are off to celebrate Cousin Magdalene AND Cousin Vaughn's birthdays today. Here is a random series of photos from our week and another video of Isaac's dance moves (pay no attention to the song he is dancing to...although, it is a toe-tapper).

Figuring out how to use a toy screwdriver.
His uncles will be proud!

Rocking yet another waiting room.

My view when I leave Kollege in the morning,
Isaac & Miss Mina.

Keeping the schedule up to date
(I'm embarrassed to think how often he must see me do this)

A perfect evening for a ride!

 

 

Isaac the ar-TEE-st!

I L-O-V-E getting photos of my boy at Kollege. Any window into any part of who he is important to me, especially when we are apart. Isaac is quite the super-star at Kollege so his teachers have started texting me photos during the day, and today this little collage was in his box:

 

 

Isn't he just the cutest child EVER??  Gosh I love him!

Thirty-Six Weeks Together

I take a gazillion photos of Isaac every week. Most I post because I'm so stinking proud of this kid. A few I delete...no one on earth needs to have access to how he or I (mostly I) looked that day. Some I save just for us; they are special and sweet and perfect and ours. But there is a list of pictures, however, I wish I could get of Isaac.  He is starting to develop his own sense of humor, paired with his own little quirks and add a dash of ingrained Asian culture and you've got one funny kid.  These are the mental photos that keep me giggling:

 

• I've been trying to teach Isaac 'thumbs up!', and you can see he understands it has something to do with the thumb doing something different than the other fingers. He tries so hard and then gives me a FOUR every single time!  It's adorable!  I get such a kick out of it, I've started giving 'four up' too.  It might just end up being our family thing. ;)
• Isaac has a VERY emphatic 'uh-oh/where'd it go' sign.  He somehow is able to shove his neck out as far has humanly possible and get his palms, wrists, elbows AND shoulders all on the same plane equal with his ears; with his head cocked to the side his face clearly declares "I have NO clue what just happened. Do you?!"  He so flexible & so fast that every time I try to do it, I get a serious kink in my neck that cripples me for several hours. UhOh!
• I think this is an Asian-thing because he did this with bananas right from day one in China...Isaac eats through fruit peels. Ewww, right? Bananas, oranges, apples, lemons, tomatoes.  He just bites right in, often time spitting out the fruit that I would prefer to eat. He doesn't seem to enjoy the process but is very determined when he is doing it. You can imagine his face...especially with the lemons!
•  Isaac loves to dance so the music is almost always on in the house, the car, on my phone, even at Kollege he has some special music toys that are just his. ("Ikick peshel toy" as his little Kollege friend Savannah would say.)  He gets into his own little groove clapping and stomping his feet, but recently one of his teachers has taught him to 'back it up' to which he sticks out his little buns and gives a wiggle. HAHAHA.  There is no way to catch that on film!
• As he has been getting stronger, Isaac is figuring out how to move different parts of his body intentionally. This week he figured out how to move his right shoulder independently from the rest of his body. He has been doing one-shouldered shimmy-shakes all week, sometimes to music, sometimes just because he can. When he does it, it's A-DORABLE. When I do it...it's not.

 

Spring has sprung, so we are trying to spend as much time as possible outdoors.

 

Trying to escape outside

 

My gardening helper

Found 1 cup of dirt, three dandelions and a green crayon in his mouth when WE were done planting.

 

He is going to be EXCELLENT with kabobs.

 

Playing in the grass

Our view

Breaking out the sidewalk chalks

He ate two of them = calcium input for the day!

 

 

Thirty-Five Weeks Together: Genetic Results!

     We are in the midst of our six month check-ups with all our specialist friends. It’s good to share in the growth & progress that Isaac has had since coming home. I still can’t get over how much he has changed! (Secretly though, I'm looking forward in some medical appointment downtime. Our day off together is monopolized by medical appointments three out of four weeks of the month).

August 2012
Look at those skinny little arms!

April 2013
Not so thrilled with being
photographed in the tub
apparently.

· We’ve graduated from the Adoption Medicine clinic and have established care with a local pediatrician. He is well loved in the community and is a lovely Christian man which blesses my heart. We’ve been in his office every two weeks for the last 6 weeks already because of a persistent ear infection, so Isaac knows the office well and walks himself straight in to grab papers off the printer under the desk. Heck…put the kid to work! We’ll need a college fund at some point!

· Ophthalmology (eye doctor) gave us the all clear for another 6months. Still no glasses needed—Praise the Lord! Not that glasses are a bad thing (I wear them!), but I am believing that as Isaac’s muscles get stronger that will include the muscles around his eyes and hopefully we can avoid spectacles for a long while.

· Neurodevelopmental clinic saw us again as a formality. Isaac is so well cared for by his therapy friends we won’t need to follow up with NDP anytime soon.

· We attempted a re-do on Isaac’s basic hearing evaluation instead of getting a sedated hearing test. He did better this time following instructions, but it appears that he may have a mild hearing loss. This is common in Down syndrome and it doesn’t appear to be affecting him much---he responds to nearly everything and ignores me appropriately (!), so I’m not overly concerned, but we’ll confirm with the sedated hearing test next month.

 

 

· We got the genetic studies back this week!  The label on my boy's designer genes is: 47 XY +21  47 genes (not 46 like boring ol’ you & me). XY (that means he is definitely a boy). +21 (the extra chromosome is on the 21^st set, therefore Trisomy 21)

     There are three different kinds of Down syndrome. I think I’ve mentioned that before. The goal of doing this testing was to confirm which of the three types of Down syndrome Isaac ultimately has, because while Ds is a spectrum disorder (wide variety of affectedness), there are certain successes and illness that can be expected with each of the different types of Ds and we want to be as prepared as possible to keep my boy healthy.

     Here is a little Biology 101 review. Spoiler alert…the word sperm & egg are about to appear! Cover sensitive eyes if needed. :)

 

23 chromosomes from mom + 23 chromosomes from dad = 46 original recipe chromosomes

 

Mosaic Down syndrome: occurs in about 1-2% of all people with Down Syndrome. In this type of Down Syndrome the goof in separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the baby to have some cells with 46 chromosomes and some with 47. The cells with 47 chromosomes have one extra 21st chromosome. Because not all the cells contain the extra chromosome 21 the range of physical problems varies depending on the ratio of cells with 46 chromosomes to those with 47 chromosomes. Clinically, babies born with Mosaic Down syndrome can have the same features and health problems seen in babies born with Trisomy 21 or Translocation Down syndrome. However, the presence of cells with the normal number of chromosomes may result in fewer characteristics of Down syndrome.

23 chromosomes from mom + 23 chromosomes from dad.
Add some spicy splitting of the cells and some cells get 46, others get 47.

 

 

 

Translocation Down syndrome: occurs in approximately 3-4% of babies born with Down syndrome. In this type of Ds a part of chromosome number 21 breaks off and attaches itself to another chromosome. Often this is chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged. Ultimately, this means this type of Ds is ‘inherited’ just like blue eyes or brown hair.

Trisomy Down syndrome: This is the most common (95%) of the three types of Down syndrome and is often referred to as Trisomy 21. This type of Down syndrome occurs because of some creativity in cell division when a pair of the 21st chromosomes in either the egg or the sperm do not separate as originally planned. This extra chromosome is then found in every cell in the body, thereby showing the characteristics that we most often associate with Down syndrome.

 23 chromosomes from dad + 24 chromosomes from mom = original recipe plus special sauce!

 

 

     Having this extra genetic information about my sweet boy will help us plan for the future, but the important point to remember is that, no matter how many chromosomes or in which order, EVERY person is created PERFECTLY by God's hand alone (no matter what science or medicine says!). I'm so excited to see the Lord work through my son and his super-chromosome in a way that is totally different than his cousins; to be apart of our Heavenly Father's unconditional love genetically lived out in my little boy's hugs & smiles. What an amazing adventure this will be for us all!

 

 

 

Eight Month Update--An Interview with Isaac Himself

Happy Family Day, Isaac!!!

We've been a family for EIGHT MONTHS!

 

 

 

April 2013 (& the toy of the hour)

So...what have you been up to?
Mostly just trying not to get sick again. A couple of weeks ago, I got another fever and got really sick at Kollege, but Momma came and got me super quick. Then she prayed out loud all the way to my doctor's office. The last time she did that I had to go to the hospital!  This time Dr. C said my ears were sick and I got some medicine. Boy, did I feel better when that medicine started to work! I'm also practicing my throwing and kicking with the red ball. I can throw really far but it doesn't always go where I want it to. So I have to keep practicing. And when I kick I have to think hard first to make my foot go. But if I don't think hard enough both feet kick at the same time and I fall on my buns.

 

What fun things do you like to do outside?

Mostly I like to just GET outside. I pound on the front door so Momma knows that I want to go out! But honestly, I'm still figuring out what to do once I get out there. Sometimes I just sit and watch. I do like to go on walks...but I don't want to hold hands. And I definitely like to eat the dirt...and the grass...and the flowers...and the bugs...and the sand. Momma makes a funny face every time I do that so she must want me to keep doing it! Momma says when it's a little bit drier when can go outside and play in the grass after dinner and play ball and with bubbles and on my slide. That'll be fun! (I think)

 

Have you found any new words to say?

I can say A LOT of words with my hands. Momma knows what I am saying most of the time, but my teachers at Kollege are still learning. They try really hard though. Momma brought one of my signing videos to Kollege so I can help teach all my friends & teachers to talk with their hands like me! There is a lady in the front row at church that SINGS with her hands, but I can't do that yet. Miss Michelle comes to my house every week to help me use my words, but I like to play a fun trick on her and not make ANY noise when she is there, then when she leaves...I makes ALL the words with my mouth!  Isn't that a GREAT game?!!  That's when Momma rolls her eyes at me and says I get that from my father's side of the family, but I don't know what that means.  Mostly I like to use my words when Miss Michelle is not here or when I'm in the bathtub. I can say "bye-bye wah-wah" when the water goes away. And I can say 'buh-buh" when I want more bubbles and 'pop' when we pop the bubbles with our hands. I can say 'up' and 'yeah!', too and when I'm I don't feel good, I say 'momma'...but only when I'm sick. I don't want her thinking she doesn't have to earn her place.

 

 

Your Momma says you are putting on weight. What new foods are you scarfing down?
CEREAL!!!!!!  Did you know that you can put milk on the cheerios and eat them with a spoon?! You don't have to eat them one by one with your fingers! That is GENIUS! I also like to eat fish but not with the funny sauce that Momma likes. And I like green beans...mostly because Momma eats them with her fingers too. I still drink my special milk to help me grow but at Kollege I drink real milk in a big boy cup just like the other kids. I don't want to drink special milk in a special cup at Kollege when my friends don't do that. I want to do what they are doing!

 

 

Any plans for the coming months?
Momma says there is a special trip coming up and she is super excited about it but she won't tell me where we are going. She did say that I get to go in a swimming pool and it's just like a big bath...except with my diaper on...and no bubbles...and strangers in the tub with me.  Why does that sound like fun??

Thirty-Four Weeks Together

My work schedule was a little wonky this week so I got to pick up Isaac from Kollege in the middle of the day twice.  Oh the look on his face when I showed up at the 'wrong' time!  He stopped dead in his tracks and you couldn't tell if he wanted to run to me alone or grab his friends and bring them to me in a pack. :)  "Whoa!  Guys!  Look---it's my Mom!" On the first day I got to spend snack time at the little table with his friends. He was so proud!  He showed me his special chair that his therapy friend had brought for him and chatted nonstop despite the shoveling of pretzels & fruit into his mouth. Of course, there were no 'real' words, but he was clearly pointing out each of his friends and sharing dirty little secrets about each one. I'm only guessing, but I think Zaden may have been on timeout earlier that day for an unknown sin and Tyrell has his sleep mat next to the wall because he falls off on a pretty regular basis.  Toddler politics being what they are, I'm choosing not to get in the middle of any of this.  The next day I arrived at the end of nap time and got to see my sweet boy snoozing peacefully on his mat. The Jesus-ball suspiciously close by. :)  I love that he is safe & well cared for there; that he has little friends and that Miss Mavis always gets a two-handed wave when we leave.  (I've never gotten a two handed wave!)

 

Snack time!

Um...you got a little something RIGHT THERE
 

Snoozing at Kollege

 

The teething toy of choice this week...the kitchen tongs.

Practicing words in the mirror with Miss Michelle

 

 

The evening time holding o' the hand.
This NEVER gets old!

Playing with the reverse camera while laying on Momma.
Silly boy.

He falls asleep on the way home from church every week during the EXACT SAME turn on the drive home.



Enjoying an evening Spring walk

Happy Easter!

What a special day to celebrate God's unending & amazing love for us!  That is was also 71 degrees and a SPECTACULAR Seattle day, makes it all the better.  We've been fetched from darkness and given abundant life...THIS is amazing love!

 

All dressed up & dancing before church.

Walked himself straight into the sanctuary today & found his seat.
Someone was ready to worship!

 

First Easter!

Some pre-dinner mischevery at Gramma's

What??
I'm forgiven & set free...didn't you listen at church today?

 

Another attempt at a cousin picture...
Someday we'll get it.
 

Traditional Jesus-is-risen-from-the-dead-celebration-Elmo-Easter eggs.

Still in the "if it's not a teething toy, it will be soon" stage.

 

 

Easter 2013!
Living an abundant life!!

 

 

I am come that they might have life, and that they might have it more abundantly.

John 10:10

 





Thirty-Two Weeks Together

      It was a medical-ish kind of a week.  We FINALLY got our genetic blood work done (We = Isaac. I was just the chauffeur and provider of goldfish crackers). I've been fighting for this since September so it felt good to see that tube of blood sent off in the right direction. (Isaac may have a different recollection of the day). The results will show us which of the three types of Down syndrome Isaac has and hopefully help us forecast the care he may need in the future.

 

      Isaac is in the midst of welcoming yet another new tooth (no. 9 in 7 months!) and has had the associated sniffles with it. I didn't think much of it, but a call from Kollege late in the week saying that he had a temperature of 102 and wasn't breathing well certainly caught my attention. By the Lord's providence alone, I 'just happened' to be just blocks from the Kollege on a clinic errand when I got the call and I was able to get to him within minutes. He was a hot, limp piece of lettuce in his teacher's lap with a single tear down his cheek signing 'momma'...oh, break my heart!!! I won't lie, I was beyond nervous that we were going to relive our hospital stay from January. What a nightmare! Thankfully, our pediatrician was able to see us immediately and gave us the friendly diagnosis of Baby's First Croup and Double Ear Infection. I am, once again, so very aware & thankful for the Lord's protective hand upon us and the power of His healing through antibiotics, Tylenol, and Elmo!

24hours after antibiotics & doing pretty good.

 

 

      We also had our six month review with Isaac's therapy team. What a treat to sit in a circle of professionals dedicated to my son's success and to be truly encouraged by them. That one is an adoptive mother herself and another has a son with Down syndrome has been such a blessing to me. Each were amazed at the developmental growth Isaac has had in just seven months! The floppy child that couldn't hold himself up last August is running and throwing and practicing kicking with his Physical Therapist, Miss Meri; sitting in a big boy chair and putting his own trash in the garbage with his Cognitive Therapist Miss Tara; putting blocks together and coloring like a pro with his Occupational Therapist Miss Betty; and has nearly 50 signs and working on his words with his Speech Therapist Miss Michelle.  Miss Michelle is the only one that comes to the house on a weekly basis and she will continue to do so. The others are Isaac's special friends at Kollege once per week and they send me emails updating me on his progress.  Because he is doing so amazingly well, physical therapy is being dropped to just one per month and cognitive & occupational therapy are decreasing to twice per month. Whoohoo!! This boy is getting healthy & strong!  Keep it up Isaac!  And THANK YOU LORD!!

Isaac & his therapy harem!
 

 

3:21 World Down Syndrome Day

 

     Today, 3/21, is World Down Syndrome Day! A day to increase awareness of the genetic AWESOMENESS that has gifted more than 400,000 in America alone, including my son Isaac. I'm proud of my son's designer genes!  And I want people to understand that what society would call a 'genetic clitch' or 'mistake' is exactly what it is NOT.  Isaac was created PERFECTLY with an extra chromosome of love just as God planned; his genetic make-up was not a mistake. The more people we can help expose to the absolute miracle of Trisomy 21 the better!  Below is Down Syndrome 101 overview from our homepage.  Feel free to share it with others and spread the love. I encourage you to participate in global 3:21 events or local Buddy Walks as well, but most importantly, be aware. Be aware of the miraculous people around you that own Down syndrome!

     My handsome boy is special in a thousand different ways. God made him with dark almond eyes and straight black hair, different from my round blue eyes & wonky curly-ish hair. His skin has a soft Asian glow, mine is that special blend of European-pale that Sherwin-Williams has yet to market as a money-making paint color. He loves music and is especially fond of bath time. I imagine. in time. he'll like to play in the dirt & listen to his Uncles talk about football. In short, he is everything that makes him a little boy. BUT he also has an extra chromosome...which makes him THE COOLEST kid on the block.

"I totally ROCK my extra chromosome!"

      Many of you have quietly asked for information about Down syndrome, which thrills my heart. I want people to be interested in one of the things that makes my kiddo special and to be aware of those around them that may also have a unique physical or mental trait. I also don't want anyone to be scared or sheepish about Down syndrome. It's alright...it's not contagious. :)

Down syndrome was named after Dr. John Langdon Down, who first described the condition. The correct terminology is just that: Down syndrome. Not Down’s, or Down’s Syndrome, because Dr. Down did not have the condition (so we do not use the possessive form,) and “syndrome” is not capitalized because it is not a proper noun. You may also see Down syndrome abbreviated online as DS or Ds.

      Down syndrome is the most common chromosomal anomaly, occurring in approximately 1 in 691 births in the US. However, as common as it is, there are less and less babies being born with the condition, because about 92-93% of mothers who receive a prenatal diagnosis of Ds choose to abort the baby. This comes to about 65,000+ babies aborted each year due to a prenatal diagnosis. I can’t tell you how much it saddens me that so many lives are lost. I am sad not only for the babies, but also for the parents who are missing out on having an amazing child. And, I am sad for my Isaac who will have less friends who are like him. With fewer people having the condition, others will know less about it, there will be fewer resources for him and less research done about Ds.

      Down syndrome is a spectrum disorder, which means the physical, emotional & mental impact of this genetic trait can vary from person to person, but there are common characteristics:

• Shorter stature. A child with Ds generally grows slower & as a result is shorter than average.
• Weak muscles (hypotonia) throughout the body. A child may seem to have less strength than other children of the same age and weak abdominal muscles also make the stomach stick out. (NOT limited to Ds...let's be honest)
• Short, stocky arms and legs. Some children also have a wide space between the big toe and second toe.
• A single crease across the center of the palms of the hands. (Betchya that'll throw off the palm-readers, uh?!)
• The nasal bridge is the flat area between the nose and eyes.
• Small, low-set ears.
• A higher rate of cardiac anomalies, gastrointestinal problems and sometimes, although rarely, leukemia.
• Very low rate of dental cavities! (Something to smile about!)
• Generally sweet & gentile personalities.

      THE MOST important thing to remember about Down syndrome, is that it is a genetic influence of the body NOT of the person. A child with Ds has been created in God's image (Gen 1:27) and has the same call & gifting that any 'typical' person has; the Holy Spirit is not hindered by physical ability, mental agility or the number of palmar creases, nor should our expectation of God's miraculous work through someone whose body is lugging around an extra chromosome. In my experience with Ds, I believe it'll take us all a very short amount of time with Isaac before we realize WE are the ones that have been short changed in the genetics department! :)

      My friend Cassandra gave me an AWESOME book photo-documenting Down syndrome called I'm Down With You. I've added a link here to the website. I encourage you take a look and love on those precious faces. They are all around us! 

      If you would like more information about Down syndrome, PLEASE feel free to ask. There is also great information at the National Down Syndrome Society web page.

 

 

Thirty-One Weeks Together

     This week while shopping at our local Swedish mega-warehouse, we came across an Asian doll (why wouldn't we??)...Isaac LOVES it! (again...why wouldn't he?) I suppose it's nice to have another Asian face in the house that doesn't live in the mirror. And this particular Asian face, when he is not carrying around the house, or licking the hair, Isaac can SIT on while playing with blocks.  Clearly, this is the truest of all signs of friendship. (I, apparently, have never loved my friends enough to let them sit on my face...for any reason).  Isaac ignores the baby during the day, but when tired will schlep him around the house, pat him on the back, attempt to feed him crackers, and/or sit on his face. It's really pretty funny to watch.

 

The newest Swedish-Asian member of the family

Loving the baby!



He is pretending to do something here...
it involved my purse and a washcloth
??

Also this week, the "I'm two and I'm all boy" switch got flipped.  You know, the jumping, throwing, bouncing, running, squealing, kicking, splashing Switch. The switch that involves: eating an entire book of stamps, pooping in the bathtub like your shooting cannon balls at pirate ships, wearing underwear on your head (I won't say who's), pulling ALL the baggies out of the drawer, and taking the mouse out of the computer to carry around the house as a phone...for example. Good gravy!  Welcome to having a boy!  What an adventure this little human is taking me on...and I LOVE IT.

 

Falling backwards on to the couch...SUPER FUN

Oh nuts...I got caught!

Ah well...

Mailing updated photos to ChinaMomma

Rockin' out at church

With Miss Rebecca after church!

 

Just look at that face!