Archive for August, 2014


A very long week

This has been a super long week. Maybe because we had to leave for our Children’s Hospital appointments in Iowa City before the sun was up on Monday. Maybe because G needed blood drawn 3 different times this week for a total of 5 different pokes. (I lost count of how many little vials were filled somewhere after 12 or 13.) It could be just working to get into the school routine. (Although we’ve missed as many days for medical appointments as we have made this week.) There is also the driving to appointments, school pick ups, and the multitude of waiting rooms (today alone we were in 4 different waiting rooms!).

I’m not going to lie – it’s hard to have your child look at you and say “no” while pointing to his arm where they draw blood. (I think he can smell a lab room a mile away.) It’s even harder to hold them while they kick and cry. I think about the surgeries I missed before he was ours. Was there anyone to wait and hear how he was doing? Was someone able to sit with him in the hospital?

But yet, I am thankful.

I am thankful after this long journey, he is here – and is a part of our family. It’s only been 8 weeks, yet in some ways, it just seems like he’s always been here.

I am thankful that he had excellent medical treatment while in Holt’s care, and we have better medical records than many adoptive families.

I am thankful that we have access to great doctors, nurses, and lab techs. Being a pediatric lab tech must be a tough job.

I am thankful that even though there have been more pokes and Dr. appointments than expected (and looks like there will be a few more), so far everything has looked a bit better than expected.

I am thankful that we have not had to spend any nights in a hospital – everything has been outpatient. We are home every night.

I am thankful for all the friends, family, health care professionals and students that are interested in G, and our adoption journey.

I am thankful for frozen food and take and bake options. It’s been that kind of week.

I’m sorry to say there isn’t much for photos this week – however, I did get this photo of G today – while he was studying for one of his tests at the nephrologist.

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A week of firsts!

We’ve had several first milestones in the last week – here are just a few of them.

Our first week without a Doctor appointment for George!

Our first time creek walking!

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Our first day of kindergarten!
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But probably most exciting was our first visit with an “old” friend from Preschool and Ilsan. The last time these two were together, they were in Korea – living at Ilsan and going to Preschool together every day. We are so thankful to have this connection for our boys. Not only did God want these boys in families – but he wanted them to keep this connection to each other and their past. They both traveled over 6400 miles to live about 100 miles apart. Close enough to see each other several times a year. I love the first photo here – looks like they are catching up! (Hope they aren’t telling too many stories about their parents!) With two active boys, and 3 siblings, the majority of the photos we took are not super!

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Looking forward – we are settling into a school routine (for the most part!) George is going to be doing a shortened day for awhile as part of the transition. Next week – we will travel to University of Iowa Children’s Hospital to appointments at the Immunology and Genetics departments, and will also see a Nephrologist later in the week. Please pray the appointments go well, and that they can get the information they need.

But this week – we are so thankful for all these firsts!

 

Medical “stuff”

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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