Week Two Of Summer Vacation

Home with all the boys for 2 full weeks---- what a hoot!

When I said I was really looking forward to this summer most people looked at me like I was nuts---Ummmm... We did not travel half way around the world and invest thousands of dollars only to ship our new kids off to day camp--- This is going to be a great time to work on skills and to settle in and get to know each other! Family time!!

The bad news is that little Deyan had to go back to the hospital as the "nails" used to hold his broken femur in place (they do this now rather than the huge spica cast) have popped through his skin and become infected--another surgery tomorrow...booo

Huge thanks to Emily, James and Marie for stepping up to help while mom is with the little guy---

So--- what does a summer day look like with 5 boys (ages 6-22) with down syndrome?

6:30am Rise and Shine! Changed, dressed and down to the living room for free-time while dad makes breakfast (Jake and Marty need special attention as they are both self-aggressive)

7:15am  Breakfast-- Cream of Wheat with eggs added for extra protein. toss in a can of peaches and puree!

7:45am  Jake and Papa take big brother James to swim team practice (Jake is now big enough to sit in the front seat and LOVES to ride home up front)

8:25am  Leave with the crew for Daily Mass

9:00am  Mass at St Lawrence in Price Hill---- it is amazing to watch the boys at Mass--- attentive, prayerful and so calm.

9:30am  Drive home---- maybe hit McDrive if we were not able to get the big kids fed before we departed Plus Jake LOVES his "moomie"-- strawberry banana smoothie.

9:50am Pick up James from swim team and head home

10:00am  Jake is ready for his morning nap--- Marty is ready for a swing.. This is where we want to add an activity time--- but that has not worked out yet

11:30am  Lunch! peanut butter and banana sandwich (pureed) for the little guys-- Sandwich or salad for the big fellows

12:30pm  Pool Time--- Everyone's favorite time of day--- I never thought Marty would like the pool--- he is so afraid of everything. It does take him longer to be willing to try things, but after a couple of weeks he is jumping in to us without holding on, going under, and floating on his belly (with some help)

2pm or so  back home for chill time (or maybe nap time for the little guys)-- this is another slot we have pegged for skill development--- hopefully next week

4pm  Dinner for little guys--- soup or stew pureed

4:30 Dinner for Big Kids

5:00 Chill time/Walks/free play

6:00  Little guys are about ready for bed--- change diapers, evening snack

6:30-7 bedtime--songs,prayers, stories

7:00  Hopefully dinner for grownups-- Wheel and Jeopardy for all who are awake

8:00  Quiet time for big kids--- Books, music, video

9:00 Bedtime for Big guys


Both Mary and I are lucky to work from home---- I have to be in the studio from 11:45a-12:25 M-F and back to work at 8pm--- Mary has had a tougher time locking in her work hours with all the medical stuff going on--- but I'm sure by the end of summer we will finally get it nailed down :-)

We will try to get pool pictures to post (weather permitting) tomorrow!


Stay well and happy Summer!



Best,


Papa!

This Must Stop

re-post from Shelly's blog

May God hold you in His arms and give you the eternal comfort you never knew on earth--- Please tell Jordan we love him

In Loving Memory2000-2012

She never learned to walk. Her days were spent standing looking over the side of a crib. She never learned to talk, but was said to smile and laugh when someone paid attention to her. She never grew beyond the size of an average 3 yr old, even though she was 11. She liked to play with toys, though I wonder how often she was actually given toys in her crib? She spent her entire life never knowing the love of a family. She died alone in a “specialized institution”.

Today, she’ll be taken off the adoption registry in her birth country. She’ll be moved to the “no longer available” section of our files and “died an orphan” is what I will write beside her name so that every time I open that file, I will remember her.

She died alone while the world sends the message every single day that “those kids” aren’t even worthy of life.
She died alone while governments all over the world send the message that “those kids” are too expensive to raise/too expensive to provide government health care for/can’t contribute as “valuable members of society”.
She died alone while school districts all over the world send the message to parents that “those kids” can’t/shouldn’t be educated causing parents to become exhausted in the fight.
She died alone while “those kids” are born every single day all over the world and parents are told to sign the papers and send them away because they will be a burden.
She died alone because we live in a sin filled world where people would rather believe that life is “all about self” and doing what is easy and comfortable.
She died alone because Christians make excuses for why they “weren’t called for that” or why only “special people” can parent “those kids”.

Her’s was not a happy ending. Her reality is that of THOUSANDS of orphans, who lived and died without anyone ever acknowledging that it didn’t have to be.

Today, I am sad and I am angry.
But, I will remember.

“We learned that orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they’re not real before you hold them in your arms. But once you do, everything changes.” –David Platt

Her name was Tsveti. 

What's Up?

Wow it has been forever since my last post--- Life has been busy, but good!


well---not all good... 2 weeks ago Deyan took a tumble down the stairs with his big sis-- OUCH! Busted femur. He was in a lot of pain for a few days, now he is just a little annoyed that we won't let him walk--

Since Christmas, we have been prodding him to take his first steps--- now we won't let him--poor dude is quite confused. another few weeks little "Cheeto".

Marty continues to push his boundaries like any good boy should-- He still loves to sign, be read to, and swing--- just on his terms-- he has picked up a nasty habit of scratching us if he does not get what he wants---anyone else dealing with this?

Many days Marty spends more time in "timeout" than out of it---- but it really seems to be working well. He understands what is expected and every day is a bit more willing to deliver.

SUMMER!

Moose made his first visit to the local swim club pool--- I was at home with Dido, but the reports were that after some initial trepidation the Moose took well to water--- I can't wait to get him to the pool to see!

Dido LOVES the water---but no pool until at least early July thanks to the break-- we also had to postpone our first family vacation in about a million years--- The beach and mouse would not be fun with a gimpy Cheeto--- Maybe August.

I may be the only one,but I am so looking forward to summer with the boys---lots of work on schedule, routine,communication and family!

It's Gonna be a GREAT Summer!

My Amazing Swimming Moose

Sorry-- I have no Pics


Today Marty and I had the most amazing afternoon---

Marty (Moose) is afraid of EVERYTHING.

We have had the kiddie pools out 5 or 6 times so far this year and the most he would do is sit on the ledge maybe putting his feet in. (one pool is actually a sandbox and has a nice place to sit and watch)

This afternoon Deyan wanted to be in--- Jake too-- so it was me and 2 of the older boys with Moose.. after a few minutes he sat his toosh in the water (first time)... a couple minutes later he was splashing with his hands---- then his feet-- then laying on his back--- then ALMOST putting his face in the water---

What an amazing transformation--- it was like watching a 9 month old enter the water the first time and after 30 minutes a 3 year old emerge with appropriate water play skills--

Moose, you amaze me-- It's gonna be a FUN Summer--- Can't wait!

Love,

papa

Tragedy Begets Life

One year ago today our baby Jordan (Jacob-Henry) died in a Bulgarian hospital from surgical complications It happened just a few months before we to hold his tiny body and comfort him with the thought of a forever family.

I still think of him every day when I look into the eyes of his brother Deyan.

Through Jordan's death, Deyan has had a chance at life. We had already committed to bring Jordan and Martin home. After we got the terrible news about Jordan's passing, we could not even think of "replacing" him with another child.

Thanks to many hours of prayer and many encouraging words from you we DID decide to find a second child that needed us-- Another child with little hope of being adopted and little hope to survive another year.

One year later Jordan's brother Deyan has not only survived, but thrived when given the chance at a full life.

Thanks to God for this miracle.

Jordan-- I will always keep the promise I made to you --

Each time I play with Deyan--- hear him giggle--- see him smile-- I will give him 2 hugs-- one of them is for him, one of them is for you.


Love Papa

Deyan... the same Kid?

Thanks to Sabrina for taking note of Deyan and his hair (the fact that he now has some)

What an amazing transformation this past year:

Easter Weekend!

Sorry it has been so long since the last post.

No drama to report. We all continue to get to know each other and to grow together as a family.

The Cliffs Notes Version:

Deyan:

• What a HAPPY kid. Sure he has moments, but what a smile just about ALL THE TIME!
• He is now officially a walker--- he can't get enough of it. He does laps in the living room, but really loves to tear down long hallways.
• Kudos to the orphanage eye docs. We finally got his eyes checked and the glasses from Bulgaria are exactly what he needs (except now that he has some meat on him they no longer fit)-- Got his new ones today!
• Zero health issues other than those (maybe) seizures.--Amazing!
• talking a bit--- we get "Mama" and "Ba" (he is taking a bottle a couple of times a day)

Marty:

• Oh Moose! All he wants to do is tell us what he wants (and for us to promptly comply). He picks up signs super fast. He is up to more than 20 signs. Some are not quite "right"-- my fave is his sign for "happy". It looks more like the throat slitting motion... 
• We have been working on signs for emotions and other abstract things this week. He gets it. Plus he has a great sense of humor. He will scowl at you and sign angry--- then bust our laughing.
• The swing machine--- Moose would swing 24 hours a day if he could. The Rainbow Play System has gotten quite a workout already this spring. Baby swing?--DA! Big swing on a lap? DA! Today he did a few minutes in the big swing by himself.
• Still freaked out about new stuff. Mary took the kids to the reds Opening Day Parade yesterday. The report was that he really warmed up to it--but just as in the past, a major new adventure means a sleepless night the following night. Excitement? Fear? Dunno

Some Pics courtesy of school!