IAC 199 Results

The following referrals were issued in IAC Session 199 which was held on 11/04/11:

1) Spanish dossier from December 2008 referred a female child aged 1 year and 10 months with peculiarities in health status

2) Canadian dossier from March 2009 referred a male child, aged 5 years and 5 months

3) French dossier from December 2009 referred a male child aged 7 years 1 month

4) U.S. dossier from December 2009 referred a male child aged 7 years and 7 months

5) U.S. dossier from December 2009 referred two female children/ biological sisters / aged respectively: 2 years and 11 months and 4 years and 11 months with physical characteristics and NP development

6) Spanish dossier from October 2010 referred a female child, aged 9 years 2 months

7) Italian dossier from October 2010 referred two children female and male / biological sister and brother / aged respectively: 6 years and 7 months and 7 years and 6 months with physical characteristics and NP development

8) U.S. dossier from May 2011 referred a female child aged 2 years and 7 months, data on family history

9) U.S. dossier from October 2011 referred a waiting child (#653) with a profile on the MOJ site

10) Italian dossier from November 2011 referred two waiting children (#1646 & #1647) with profiles on the MOJ site

Emilia - Three Weeks Home

Yesterday we had our first post-placement visit for Emilia which means she has been home for three weeks with us now. The last two weeks have been quite wonderful as Emilia has really come out of her shell. We now know the sound of her laughter, something we didn’t hear even once while at the orphanage or in Bulgaria. She is not scared of us anymore when we come near. She smiles when she sees me, especially in the morning when I get her out of her crib. She cries when hungry or thirsty finally. She has figured out how to climb into her high chair with no help which is a little scary. She has learned how to maneuver her push cart all over the downstairs and how to get out of corners with it when stuck, too. Emilia says four Bulgarian words, two of them frequently. We hear “ne ne ne” emphatically at bath time and whenever she is not happy with us and we hear “die die die (give me, give me, give me)” whenever she wants to be picked up, bounced, tossed into the air, etc. Her orphanage behaviors are decreasing. We rarely hear her clicking/teeth grinding sound anymore. She still rocks a little bit and definitely continues to suck her thumb.

Emilia had her initial visit at the International Adoption Center at Cincinnati Children’s Hospital a few days ago. She weighed in at just over 17 pounds with clothes on and almost 29 inches tall. Of course, based on these measurements which put her below the third growth percentile by US standards, she received diagnoses of failure to thrive and short stature. At this time, I am not worried about either. Emilia eats much better now. She tries all the pureed foods I offer, but she’s sticking to her chocolate milk and chocolate Pediasure for drinks. We’ve tried expensive juices and other flavors of milk, we’ve tried fancy organic drinks, but no luck. Emilia continues to have several bowel movements a day. Her stool samples tested as parasite-free, so now we have to keep searching for what might be causing all of these BMs. If anyone has any ideas or advice, I’d be happy to know.

The biggest challenge with Emilia is sleeping at night. She did extremely well transitioning into the midday nap with Rex and me this week, but we simply can’t figure out how to get her to sleep through the night. It has happened once or twice, but most nights, she needs a snack in the wee hours and then she frequently decides it’s a fine time to play for a good while. Even when she does sleep, she is usually rather restless and occasionally makes these little sounds that don’t seem to wake her, but jolt the rest of us. Craig and I are both very tired and we joke that we are like ships in the night, passing each other in taking turns with Emilia, going back and forth between two bedrooms, mostly so that one of us and Rex can get some sound sleep.

Overall, Emilia’s transition to our family thus far has been very smooth. She continues to approach her stand-offish brother for contact and is slowly chipping away at his defenses. She’s a sweet, curious, determined child who showers us with great eye contact and smiles. I have a feeling that this tiny treasure is going to grab life by the horns and take us all for quite a ride.

Rex - Seventeen Weeks Home

Yesterday marked seventeen weeks home and nineteen weeks out of the orphanage for Rex.

The last two weeks have been really hard; hard on Rex and hard on us as his parents. Rex is being the super squeaky wheel here and requiring a lot of grease. The major change of becoming a big brother has thrown him off kilter and brought back some of Rex’s auto-aggressive behaviors. We’re not seeing rages, but there’s plenty of slapping and hitting his own head and face and some screaming, too. He is insecure and easily frustrated. So, we have been doing what we know worked in the past: holding and re-directing, lots of attention, lots of snuggles. After three weeks of this regression, it seems that the corner we need to turn as a family is in sight.

Developmentally, I think Rex is taking a little hiatus. I don’t blame him. He has a lot to process as it is and hey, it’s the holidays. He re-took the Denver II developmental assessment this week (of course, not showing off his skills to the therapist) and is now at 18 months gross motor, 11 months fine motor, 11 months language, and 12 months social-emotional. That’s progress in all areas, slow but steady. I don’t know if he will ever catch up to his peers, but if so, I expect it will be years down the road. We are going to take it easy for the rest of this month, just working on helping Rex find his footing again, and then start focusing heavily on speech and fine motor skills in January. Rex continues to reap wonderful benefits from his OT and also receives ABA therapy in-home.

After doing some research and hearing from other parents whose children have Rex’s syndrome, we are experimenting with a creatine supplement for Rex. Some parents have found a great increase in muscle tone and, therefore, motor development and some positive effects on cognitive function once their children started taking creatine. We’ve only been using it for a week, every other day, and I am not yet noticing any changes, but there’s a lot going on, too, so I might be missing it. I am also going to start adding fish oil and B vitamins to Rex’s diet as this seems to aid some children with speech development.

Rex does love the good times and enjoys tickles, music, kisses, and rough-housing with his daddy very much now. He is joyful and likes to have fun. I believe that this is truly who Rex is meant to be and if we can keep chipping away at the hurt, disappointments, and frustrations, more and more of his wondrous personality will emerge.

Nikolaus

This week der Nikolaus (aka St. Nick) made his first ever visit to our house. Just like I did as a child, Rex and Emilia put their shoes on the windowsill in the evening.

And overnight, der Nikolaus brought them Christmas pajamas and a playdough set.
In the morning, Emilia was quite excited when she discovered the loot.
What a great first Nikolaustag!

He's With The Band

Yesterday we attended a wonderful Christmas party organized by Cincinnati Children’s Hospital especially with children who have developmental and physical disabilities in mind. We are so glad we went because Rex had a blast. The party included a live band with four instruments (a tenor saxophone, a banjo, a trumpet, and a double bass) and because Rex LOVES music, he was immediately drawn in and fascinated. At first he stood and looked, then he clapped to the beat and danced. Finally the musicians were incredibly kind and indulgent to him, allowing Rex to spend the length of entire songs placing his hands right on their instruments and feeling the vibrations while enjoying the music. The band leader kept telling us, “It’s okay, he’s with the band.”

I am incredibly thankful to have had this opportunity and I can tell you that I cried some tears there, seeing my son, for whom I have been given a very grim prognosis, so happy, interested and engaged in one of his life’s greatest pleasures. It must be true for Rex what Ray Charles once said, “I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water.”

The Good Life

How lucky am I to have these three loves in my life?

Orphanage Donations - The Last

One final time I would like to be accountable to those of you who contributed to our orphanage fundraisers over the last two years. All the money has been spent now that we purchased the following items for the baby house in Dobrich.

27 toothbrushes ($18.50) and 8 bottles of children's vitamins ($16.42):

An assortment of toys, diaper rash ointment, and toothpaste from Walmart ($33.31):

And $350 worth of diapers and food for the children who had to remain behind at Emilia's orphanage:

We raised $1415 and spent $1421.23 on items delivered during four trips to two orphanages.

Thank you from the bottom of our hearts to all of you who made these wonderful gifts possible with your generosity and kindness.