And Babies Make Four: Adopting Two Sons with PKU

March 1, 2016 adopting as first time parents, adopting two at once, Blood Conditions, Family Stories, March 2016 Feature - Blood Conditions, PKU, virtual twins 4 Comments

At birth, I was diagnosed with PKU (Phenylketonuria). Most people do not know about this metabolic disorder, but all newborns in the US are tested at birth and if diagnosed, a special low-protein diet begins and should be maintained throughout life. With proper treatment, the child will escape the threat of untreated PKU which includes: memory loss, lack of concentration, mood disorders, and most notably, low IQ and severe developmental delays.

When my husband and I married and we looked at our future, we began discussing children. We both loved the idea of adoption and saw that as part of our family’s future. A few years later, we obtained our foster license, with the intent to someday adopt through the foster care system. A child with PKU needing foster or adoptive parents is rare, but we told our clinic to let us know, and that we’d step in if this type of situation should arise. As our first set of foster siblings returned to their birth family, we heard of a little boy with PKU needing adoption. The catch: he was living in an orphanage in China! Access to healthcare is a challenge there. This little boy’s parents were unable to properly care for his medical needs and felt that abandoning him would be his best chance at life.

We talked, prayed, and tentatively discussed this opportunity with our family and close friends. We quickly decided that we were headed to China! We had no clue what we were in for. We completed our homestudy, compiled our dossier, and then heard about other children with PKU in China. We informed our adoption agency that we would like to come home with two children on our trip to China.

A month later, we had our second child’s file in hand, were granted Pre-Approval and submitted a second dossier. It was official, we were going to leave home as a married couple and return home from China as a family of four! Disbelief, and then panic set in.


PKU1


In May 2015 we hopped on a plane destined half way around the world. A few days later, our lives changed forever when we adopted two 2-year-old boys. One of our sons met us and couldn’t stop staring at us, watching the traffic and scenery out the van windows, and taking everything in. He is still our “observer” and loves to watch the people and things around him. Our other little boy took one look at us and began screaming. He continued to cling to the nannies and cry until my husband pried him out of the nanny’s arms to get into the van so we could drive away. By the next day, both boys were calling us “Mama” and “Baba”, drinking their special “PKU milk”, allowing us to hold them without objection, and beginning to explore their new (temporary) home at the hotel room.

One of our children had severe sleep issues. He threw a 3-hour tantrum one evening at the hotel because it was bedtime. He was terrified of stuffed animals, blankets, cribs, beds, and even screamed when it was near bedtime if we sat down while holding him. Car rides and loooong walks through China were the only ways to get him to fall asleep initially. To this day, he still needs less sleep than his brother, and less sleep than the orphanage claimed he was used to.

After months of establishing a bedtime routine, learning to trust that Mama or Baba will come running when he first wakes instead of leaving him in his crib for an extra hour until everyone else wakes, and settling into his new home and family, he finally can fall asleep without objection and will sleep through the night.


PKU


Neither of our boys scored low enough in their evaluations to need special therapies or other services initially. After several months, by the age of 3, there was enough of a language gap between our oldest son and his peers (that have been hearing and speaking English their entire lives), that he barely qualified for speech services. My understanding was that this was unheard of in post-institutionalized children. These kids are full of personality, little balls of energy, cute as buttons, absolutely hilarious, sharp as tacks, and blessings to everyone they are around.

Adoption is not easy, but so very worth it. I’m so glad we decided to trust that the finances would be provided, took the leap of faith that we would be able to deal with bonding and attachment issues, accepted that we would likely have delays to tackle, and didn’t let the “horror stories” of adoption scare us away.

We truly believe that our faith calls us to care for widows and orphans. What better way to do this than by accepting them into our family, giving them the love and nurture everyone longs for, and caring for their medical needs?

We have adopted Kings and Queens by Audio Adrenaline as our “family song” and when I stop and listen to the lyrics, can’t help but be moved to tears of joy. Last week, we celebrated 9 months since two orphans joined a family and are now living as kings:

“Little hands, shoeless feet
Lonely eyes looking back at me
Will we leave behind the innocent too brief
On their own, on the run
When their lives have only begun
These could be our daughters and our sons…”


PKU2


When we decided to set out on this journey, were we crazy? Absolutely!

Did we know what delays and issues our soon-to-be sons would have? Not really.

Has life been absolutely insane these past 9 months since we returned from China? That is an understatement!

Would we change anything about our journey or family portrait? Not a chance!

Are we “done”? Only time can tell… 😉

– guest post by Kristi



4 responses to “And Babies Make Four: Adopting Two Sons with PKU”

  1. Lynn Cameron says:

    Love your story, Kristi, and your boys are adorable! Looking forward to watching them thrive and grow. See you soon, I hope!

  2. gayly says:

    So fun to see your story, though you may not remember us, I met you in China in May. I was traveling with my girls to bring home our newest son who was about the age of your boys. How they have grown!

  3. Wendy says:

    Hi Kristi!

    I have submitted my LOI for a 16 month old China boy with PKU. What brand of formulas is best tasting to kids? I have ordered a PKU cookbook. Any info would be appreciated! Congrats on your handsome boys!

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.