Monday, November 24, 2014

We're Still Here

Sorry we've been MIA.  Those who are friends on Facebook will have been kept abreast, but I know there are people who read here who are not on FB or not my friends.  We're almost two months home now and we're all settling in.  I will try to do another post with lots of pictures later today.  For now, information!

Overall, the only real issue has been Finn's health.  Of course, we knew it was precarious when we adopted him, but we didn't quite realize how truly close he was to death.  We thought that he'd need to be admitted to the hospital the moment we stepped off the plane.  We were surprised to discover when we picked him up that he seemed much healthier than we'd been led to expect because the orphanage made it clear he was dying very quickly.  We were able to bring him home and spend two weeks bonding before his first appointment with the hematologist.  Towards the end of those two weeks we began to notice changes in his health and behavior, but we believed those were due to his need for a transfusion.  We were really glad to have that time when blood tests were done and it became clear all was not right inside, even if he seemed okay on the outside. 

All children with transfusion dependent Thalassemia have very high ferritin (or iron) levels when they are not being properly treated.  A normal person has a ferritin level of somewhere between 47 and 300.  Children with Thalassemia frequently come home with ferritin levels in the thousands.  Chelation medications can be used to draw iron stores from the body, but children in other countries are often not properly chelated, which was the case with Finn.  His ferritin levels were astronomical.  Some children come home from the orphanages and their levels show that they were still thriving even with ferritin levels of 10,000 or above.  This was not the case with Finn.  His organs were suffering severely and were on the brink of a massive shut down from his levels of iron.  He spent nearly two weeks in the hospital receiving heavy doses of IV chelation meds.  When we left the hospital his ferritin levels were still around 6000 but that was a big drop from where he'd been before.  At current, his ferritin levels are in the 4000s.  We take this as a great sign that his oral chelation meds are working.  He's been hospitalized a second time in the two months we've been home, but we are really hoping that inpatient care is behind us for awhile.   

Emotionally, Finn is doing very well.  He does suffer from severe medical PTSD from his hospital experiences in China, but I think that can hardly be a surprise considering.  Some days are better and we can get tests done, some days he's just hysterical the entire time and we can't even get close to getting things done.  At home, he's a smiley, happy, clever, bit overemotional, boy who clearly has experienced severe trauma in his short life.  We have a lot of emotional work ahead of us, but we can see a healthy Finn at the end who is slowly working through baggage that most of us would never survive, let alone at six years old.  He's a very, very, very smart boy who continues to surprise us every day.  His English is coming along nicely.  Now that the IV line that was installed in his arm and went straight to his heart has been removed (and replaced with a surgically implanted port under his skin) he's able to attend school with the rest of his siblings and is thoroughly enjoying kindergarten.  

Jake is less interested in learning English, and that makes sense to me.  He's older and his cultural identity is a large part of his overall identity.  I know that he struggles with not belonging in our world and that grieves me, but we do have many Chinese speaking friends and we take him often to local businesses owned by Chinese families to give him a chance to interact.  We hope that in a few more months he'll be a little more willing to try out the English language.  He's doing well in school and emotionally he's doing well at home.  Of course, he does have his moments as all 11 year olds do, but overall he's a very good kid who takes pleasure in doing the right thing.  He loves having grandparents and seems very pleased whenever he has the opportunity to spend time with any of this three local grandparents. 

Jake was evaluated last week by the school with a Mandarin speaking interpreter, which we really appreciated.  We have friends whose school districts will deny their requests both for testing and for people to help them accomplish testing in their own language.  Our school came to us on the first day and told us that because he does have brain difference they wanted to test him for placement immediately and make sure he got any services he might be in need of.  It did take some time to get it all lined up, but they accomplished it last week.  We haven't received the results yet, but we're fine whether he needs a little extra help or not.  We did learn that he has great vision in his right eye, but his left eye does have some blindness.  That's not a total shock as the left side of his body does suffer from some paralysis.  So there will be some trendy glasses in Jake's future!  I don't think he's currently mature enough for a contact lens, but that's no doubt an option in the future.  Jake loves Saracha and puts it on everything, and I do mean everything.  Yesterday, he ate it on oranges, and the other day he treated himself to a peanut butter and Saracha sandwich :\ 

Overall, the boys are doing great and when we're not spending 24/7 at the hospital, we are all settling in quite well.  I will not vouch for the state of my house when those hospital stays come along, though...

Amber

5 comments:

  1. There's a lot of good news in this post! Slowly but surely, day by day...you are becoming a family.

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  2. I can't tell you how thrilled I am that you adopted Finn. I kept watching and praying for him because adopting him was not an option for me.

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  3. Awww thanks Cate! We're pretty thrilled with him too. Just today I was driving home from the store thinking how tragic it would have been for the world to lose a kid like Finn so young. He's a firecracker and a fighter and I'm pretty much positive he's going to change the world some day! Thank you so much for thinking of him and praying for him. All the prayers from around the world definitely sustained him!

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