There have been some questions about George’s medical appointments and how he is doing on that front. Of course, before we were finalized, we couldn’t share details, but now can share a bit to let you know a bit more about G, but also raise some awareness for a disorder that is a bit more common than most people realize.

G has 22q deletion syndrome. He is missing a piece of chromosome, that can cause a variety of medical and cognitive issues. There are 180 different symptoms, although individuals generally just are affected by a number of them.  In an effort to not bore you, or present mis-information. If you are interested in learning more about 22q deletion I highly recommend the Dempster Family Foundation website. (Yes, for the large number of Cubs and Red Sox fans we seem to know, it was founded by “that” Ryan Dempster, who has a daughter with 22q deletion.)

What does this look like for George, and all of his appointments?  Before he was 2, he had 3 surgeries (open heart, cleft palate, and hernia), he’s been hospitalized other times for kidney issues and pnemonia and gets sick very easily. He also has delayed speech, some foot issues, and is slow to heal. We are still visiting different specialists and learning what are past issues as well as short and long term issues.

So far we have seen our pediatrician, The University of Iowa Cleft team (Speech, audiology, ENT and orthodontics), a podiatrist, and cardiology. We still have  immunology, nephrology, genetics and more general ENT to go.   (Hey, we are half way done!)  Luckily, after this initial round some will just be a check in every couple of years (cardiology) while some will be more frequent (ENT, podiatry).  I’m eager to see immunology and learn more about how we can help keep him (and all of us) healthy this year, and what that will look like, as well as where is immunity levels are.

Please understand, we are not looking for issues, and definitely are not looking for attention or pity for ourselves or G – our goal is for him to have the experiences of all other kids, and to grow up not seeing his diagnosis as something to hold him back or as an excuse for special treatment. We are very thankful for the care he received through Holt Children’s services in Korea. Many little ones with 22q do not survive their first couple of years due to the combination of symptoms. We are thankful for his birth mother who made a very difficult choice for him to get the health care he needed. We are thankful for the staff at Holt Ilsan Town who recognized that even though he wasn’t speaking, he is a thinker and a problem-solver and gave him the opportunity to attend “town” preschool instead of the special needs school (which is also wonderful) on campus. We feel blessed that most of the time – G is an active 5 year old boy.

Our specific medical prayer requests would be:

  • That G’s doctor anxiety would fade. It’s hard to see him start to get upset as soon as we go into a waiting or exam room.
  • Wisdom for us as we look at treatments and course of action
  • Patience and understanding from all parties (including us!) as we explore education options and decisions
  • and that to most people – G is just an active 5 year old – with no “labels”

But now it’s time for a few photos – I felt the need to put in a couple of waiting room shots given the topic of this post. Both boys had appointments at the Cleft Clinic in Iowa City – Lucas LOVES this waiting room and talks about the fish tank at the “Hawkeye Doctor” a lot. The family shot is from our lunch visit to KAMP -(Korean Adoption Means Pride) and hope to be more involved in the KAMP gathering next year. And a shot from the park today – there was a new “spinny” toy installed, the boys loved it.

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