Happy World Down Syndrome Day!

Today is World Down Syndrome Day!  It's a great day to celebrate the blessing of those who are gifted with "that little something extra," and it's also a great day to give an update on Jonah and say thank you to all those who helped to bring him home.

When we first got Jonah he was in pretty bad shape.  He had such horrible infections it took many rounds of strong antibiotics to get him well.  His nose bled constantly, and his face looked terrible.  We discovered he had hypothyroidism which he had not been treated for in the orphanage.  He had trouble eating and drinking without choking.  He was very delayed developmentally, even for a child with Down syndrome.  He had somehow managed to survive without medical care, with minimal nourishment, and with minimal nurturing, but he had definitely suffered for it.

In the time that Jonah has been home he has become like a new kid.  First off, he is healthy!  He has had a few minor colds, but he has never gotten anywhere near like he was when he first came to us.  He also gets medication daily for his hypothyroidism, and he not only gets treated for his known needs he is getting appropriately screened for all the other things he is at risk for.

Secondly, Jonah has grown so much!  He has put on a lot of weight and has grown in height as well.  Plus he has not only learned to eat and drink without choking, he never wants to stop!  He will quickly eat all the food on his plate, and when he has finished it he hands his plate to Mommy knowing I will give him more.  He has also mastered the art of sneaking into the kitchen and getting apples, bananas, or bread from the counter, cheese sticks rom the refrigerator, cereal from the cabinets, and anything else left within his reach.  Jonah LOVES to eat!!!

Thirdly, his development has taken off wonderfully!  He could barely walk when we first got him, and now he walks everywhere!  He tries so hard to keep up with all his siblings.  While he used to be content to sit and look at one toy for an indefinite period of time, he now eagerly moves from one toy to the next.  He is also learning how to play with toys.  He no longer just looks at or holds a toy in his hand, he interacts with it.  He pushes cars along the floor.  He throws balls.  He puts things inside and pulls them out as appropriate.  He pretends to eat toy food and drink from play cups.  He even tries to put diapers on baby dolls!!!

Unfortunately, Jonah isn't really progressing very much in speech.  He does occasionally say "hi," and he seems to be saying "thank you" when somebody gives him food at the table (not that it sounds like thank you, just that he seems consistent in making a certain sound when given something).  He seems to be making an effort to say "I love you" in response to us saying it, but it comes out with only vowel sounds, something like, "I-wooooo."  He hasn't shown any willingness to use signs for communication either other than handing his plate over at the dinner table for more food.  I have tried so hard to get him to learn the sign for "drink," but he has yet to use it appropriately (I have gotten him once to imitate it, but he's yet to use it to indicate his desire for a drink).  He does, however, try to imitate his younger sisters (Elianna and Hannah, both 3) singing.  He will "sing" along whenever they are singing, and he has even started dancing to music, a welcome sight since he showed no response to music when we first adopted him.

Overall, Jonah's development since bringing him home has been simply amazing.  However, the most wonderful progress developmentally has not been physically but emotionally.  Jonah has gone from being a little boy who just existed to a little boy who is truly loved and who knows he is loved.  I think the greatest example of this is the change in his reaction to pain.  The first time we took him to the doctor he showed no reaction to being held down and given his shots.  The nurses were in total shock.  However, the second time he not only screamed in pain he looked to me for comfort.  When we first adopted him he went to everybody and anybody for attention.  He still readily goes to other people, but he definitely shows a preference for his family, especially mommy!  He even "kisses" me in his own little funny manner (it's not a true kiss like people think of but it's obviously his intent).  He greatly enjoys his siblings also and shows a strong attachment for them.  He is a truly happy little boy, full of laughter.  He does have his occasional meltdowns, but they are always short and easily overcome.

We often think about Jonah's life before his adoption, how horrible it was for such a precious young child to be stuck in a stark crib in a drab room all day, day after day after day...  He has Down syndrome, but it does not define him.  Jonah is a special soul, a true blessing.  There will be many things in life he doesn't understand, but he clearly understands love.  He may never speak, but he communicates love without hesitation.  He may face obstacles in life, but he deserves the chance to have every opportunity to learn and to experience the world around him.  We are so very grateful to all who helped to give Jonah the chance to live, to be healthy, to learn new things, to explore the world around him, and most importantly to love and to be loved.  If you donated money to help get Jonah home I hope you understand your donation was not a gift for us, it was for this precious little boy.

 

Jonah's life in the orphanage.  That's him in the yellow shirt and red pants (he looks heavier than he really was because it gets very cold in the building due to lack of heat so the children are put in many layers).  He spent his entire day, every day, surrounded by metal bars.  The floor of the crib was hard.  There was nothing of comfort for him, no special stuffed animal or blanket.  He had no toys.  He had no one to love him.  He was an orphan.

This picture was taken by a family that traveled to adopt their son before we got Jonah.  The pictures they sent showed us a sick little boy.  His nose was cruddy and bloody (once home his doctor said the inside of his nose looked like "hamburger meat" it was so bad).  He cheeks were flushed with fever.  One ear looked red (from the outside, I can only imagine how bad the inside of both ears looked!).  His lips were chapped.  He obviously wasn't being cared for.  It took us MONTHS of many strong antibiotics to get his infections cleared up.  

My husband took this picture the day the adoptive families in his travel group received the medical files for the children.  Once all the files had been passed out he asked why Jonah didn't receive a file.  He was told because Jonah has Down syndrome he was "not worthy" of medical care so there was no file on him.

Jonah's first bath (with Daddy in China). 

Falling asleep in the arms of love for the first time (with Daddy in China).

Daddy plays with Jonah while still in China.  Getting attention, getting played with, getting loved - all new experience!

Jonah at his first doctor's appointment just a couple of days after his arrival home.  His mommy, daddy, and 5 of his siblings were in the room with him.  The other kids were talking, laughing, and playing, yet he walked to the corner and stood there.  He literally stood in the corner for 20 minutes until the doctor walked in.  The next time we went to that doctor he was so playful he was difficult to control.  Jonah is like the butterfly that opened up from it's cocoon.  He has been completely transformed from the child he once was.  He is no longer an orphan, unwanted and abandoned.  He is our beloved son.  

Thank you so much to all who helped to get this precious boy out of an orphanage and into the arms of his family!  There are no words to accurately describe the difference love makes in the life of a child!  Your gift has truly helped to save a life!!!