Created For A Place: August 2012

Tomorrow will mark the first anniversary of Jack’s Gotcha Day. For those of you unfamiliar with that term, it is the phrase used in the adoption community for the day your adoptive child was first placed in your arms as a permanent member of your family. For Jack, the event occurred when he walked through the doors of the Adoption Registration Office in Zhengzhou, China on the morning of August 15, 2011.

And now it has been a year. I have been remiss in posting much over the past many months for which I apologize, but I also refer back to one of my last posts where I explained that much of Jack’s story is now his to tell. His journey home has long been complete, and now his journey is more one of the heart than of distance so it makes it difficult for Mom to share intimate details on a blog that Jack may later wish had been kept more private. I will do my best, however, to take this anniversary moment to at least catch you up on the medical scope of things and a few highlights too.

The medical year has gone something like this:

Jack has been seen by three dermatologists over the year for consultations regarding his skin. It has been confirmed that his case is one of Epidermylosis Bullosa Simplex (EB) as diagnosed in China, and all looks good. I wasn’t sure how the warmer climate was going to effect Jack’s skin when we moved to CA in May as I was told by one doctor that warmer weather tends to result in more blisters, but so far his skin is still doing very well.

Jack was also diagnosed with hypothyroidism back in October and has been treated for such ever since. This diagnosis and subsequent treatment came as a true blessing way back then as getting his thyroid up to speed made an enormous difference in Jack’s overall well-being and physical abilities, as well as beginning to counteract the learned helplessness he came home immersed in. (Treating his infestation of giardia at the same time didn't hurt either!)

Soon after Jack’s thyroid was addressed, it was also determined that he is anemic. Anemia is actually a side-effect of EB so this was not a surprise to his doctors, but it wasn’t something I had considered. I was amazed to learn, however, that anemia can cause insomnia and have been even more amazed over the course of the year at just how huge an effect a simple iron supplement can have upon a person’s sleep cycle. Needless to say, this area of treatment has been a huge blessing as just one short month ago we finally found the right medicine schedule for Jack to be able to get a full night’s sound sleep every night. Finally! At the age of 5 1/2!

Since moving to San Diego, Jack has also been referred to an endocrinologist to monitor his thyroid and his growth over the next many years so that is encouraging as well.

One of the biggest medical issues we have tackled over the past year has been Jack’s teeth. When Jack came to me last August his teeth were brown, rotten and had visible cavities in them. This condition was the result of many pieces of Jack’s medical and environmental history so understandable, but still desperately needed attention. In January, after we had met with all of the other specialists, I finally made a consultation appointment with the dentist to find out exactly what had to be done. This consultation then turned into a needed appointment as Jack began complaining of tooth pain the day after I made the appointment. And from there we ended up with major oral surgery. Due to a spreading abscess and the severity of the decay of all his teeth, Jack ended up having ten of his baby teeth removed and the remaining ten cleaned, filled and crowned in an effort to keep them viable as long as possible. He is now sporting those ten silver teeth along with two new adult ones, but has a long way to go before he gets anymore. He did see the dentist for his six-month check up a couple weeks ago, though, and right now all looks good. There is a suspect molar under one of those crowns which may eventually abscess and require treatment, but for now it is only under observation.

The final major medical issue for Jack at this point is his heart. We visited the cardiologist in MD back in November and she said that everything looked as she would expect given his records from China. Surgery would definitely be warranted sometime during his youth to replace the valve for his right ventricle, but there were no major concerns as of that time. In June, however, we visited the cardiologist again, this time in CA, and things were looked at a bit differently. The doctor here in CA did a much more thorough exam as his goal was to check and verify everything that was written in the Chinese paperwork and by doing this he came upon a couple questionable situations. Given the results of this more current testing, the cardiologist feels that Jack will need surgery within the next calendar year to address the valve issue as well as open a portion of blocked artery leading to his right lung. We are currently waiting on an appointment with Children’s Hospital here in San Diego for a catheter procedure which will dictate the how and when of this surgery.

So there you are - the medical stuff in a nutshell. Okay more of a conch shell given its volume, but you get the idea. The one other medical issue that we are still in the waiting game with is an upcoming appointment we have with a Developmental Pediatrician. Jack has many sensory integration issues and is drastically delayed in several emotional and cognitive areas. The hope is that by working with the developmental pediatrician we will be able to more pointedly address these issues and do even more to help Jack make gains in developmental levels and his abilities to function despite sensory challenges.

Okay, so how about I get away from the serious stuff now and just share some highlights since the last time I posted? Sound good? I’ll even make it easy for you by not writing much and simply posting lots of pictures since they tell a 1000 words each anyway, right. So, here you are… what Jack's been up to since last time I posted.