You probably all know that Joy is not with our family. The reasons don’t really matter any longer. What matters is that God provided the ministry of Hope for Orphans and a couple wonderful, Christian families to stand in the gap for her. She ultimately found her home with a large, adoptive family in Texas. You can see their post about Joy on their website at http://www.vidanuevaranch.com/Default.aspx?id=23300&Title=Joy . You will be blessed! Thank you for contributing to bringing Joy out of the orphanage and into many families’ hearts and one families’ home. Some things were expected, some things unexpected. Joy is one of our miracles either way.
Another reason why today is a milestone is that we had an appointment for John at Children’s Hospital that we have waited for for nearly the past six months. We knew when we decided to adopt him, that he very likely had a syndrome at the root of many of his issues, and would need to be seen by Genetics. We recently did the bloodwork to test for genetic abnormalities and learned that he actually has a chromosome abnormality called monosomy 21. Today a couple doctors explained this condition more completely. John actually has partial monosomy 21, as full monosomy 21 is not compatible with life. We were surprised to learn today that monosomy 21 is classified as a very rare form of Downs Syndrome, which is usually thought of as only trisomy 21. There are only 40 other cases of this disorder recorded and only 3 other children or adults in that 40 have the same portion of one of the 21st chromosomes deleted! Their attributes are similar to John’s – characteristic facial features, clefts, epilepsy, intellectual disability. We also learned that there is a higher chance of kidney and heart problems and that John does have one malformed kidney. We’ll have to see nephrology and he’ll also have an evaluation of his heart soon. Life expectancy for this disorder is unknown, since, well, there are only 40 others….He was a very frail little guy when we picked him up and still is pretty small and low stamina, but getting stronger and steadier every day. He has gained 10 pounds in the last 6 months and is now slightly taller than Zeke (Zeke is like 2nd % for height though!). His seizures are infrequent and mild and we’ve decided not to put him on meds for now. His hepatitis has not impacted his liver and his glasses have opened up a whole new world. His scabies returned recently and I had to treat it again the other day, but the bites aren’t quite healed up yet which slightly freaked out the dr. who saw him today. Scabies, lice, ringworm, giarrdia, fungus, tuberculosis, hepatitis, HIV – in our affluent culture, these are topics best talked about with other adoptive parents… (scabies is nearly impossible to catch in hygienic surroundings)
John has just about the sweetest disposition any kid could ever have – truly - even sweeter than May, which we used to think impossible. He spends most of his time going on errands with mom or dad, playing with May (they are the best of friends!) or jumping on the tramp with Connor or being instructed and overall loved on by Nicole, or interacting cautiously but in growing ways with Zeke. He hums or jabbers basically ALL the time now, which is so different than his previous mostly quiet self. He still often has to go to the bathroom every hour or so, which changes our trips quite a bit, but he is a pleasure to have along – so happy to just hold our hand and walk around looking at everything. He is still unable to speak almost at all and one of our main speech goals since his cleft surgery in February has been to help him learn to spontaneously add the “m” to the front of “a” to refer to me. I am still “a – a” to him, but he is slowly starting to get there. If I say “a – a, who is that?” he will respond with a fairly laborious “ma – ma”. It is pretty amazing what those first years do for speech development. John is learning sign language and we again see how God has used sign and alternative communication methods to serve our children . He can finally buckle his own seat belt, slowly, and he can usually manage to get his pajamas on, again, huge progress. John attended a wonderful public school with May for the last half of this school year. He and May shared an amazing Kindergarten teacher and para-professional, who are responsible for so many of his (and May’s) tremendous gains. He knows his colors and his numbers to 10, some of his letters, his name etc. If you ask him a question, any question, he will put up 6 fingers in response, as fast as he can with a smile on his precious little face. J Pretty remarkable overall we think –the sky is the limit at this point!
He also loves to go swimming, which I finally did for the first time this morning with all the kids and no adult help. Another mom swimming with her three young kids talked to me quite a bit about how remarkable it was that, with the five kids and the special needs, it still seemed so doable, almost easy. (!!!) She said that it actually makes her interested in adopting a couple children herself. I had to finally say something about how it has been a very challenging 6 months and this is actually the first time I’ve brought all the kids to the pool alone. But still encouraged her to definitely consider it…J
There is so much more I could say about John. Some of his mannerisms and expressions are just a hoot. He wants to be an active part of everything going on, but when there is nothing going on, he’s okay with that too. He truly desires our attention now, and expects it, which is huge progress. He looks up at us with what is still a vulnerable look, but he is looking and asking for his needs and wants, something he didn’t do even a few months ago. He LOVES praise, and wants so much to please, which means he almost NEVER needs correction (what is that?) and he lets us know basically every step of everything that he does all day long, so that we can tell him “good job”. He likes to be carried around and held and hugged, which is also huge progress. Still isn’t really into kissing, but accepts the obligatory kiss then wipes it away like we all have a disease. Kind of funny, considering. J Throughout the day, when I tell him that I love him, he now responds right away, “a - u - ew” or however you would write those sounds. He loves to pray and to sing songs about Jesus and we know that he will be able to one day understand what his Savior did for him. He has surgery on Thursday to begin a correction of his eyes and hopefully save some vision in his left eye, as well as to put tubes in his little ears filled with scar tissue. He’ll have his 2nd palate surgery in August and then another eye surgery and dental surgery soon after that. Some things were expected and some things have been unexpected. But John is certainly a miracle either way.
the summer "do"We are privileged to know so many adoptive and adopting families – my brother and his wife in son in Taiwan adopting a beautiful baby girl, 3 friends in China adopting special needs children and another leaving in a few days. Among our friends are children from all over the world, with all different kinds of special needs. The Heasslers, who we were with in China, just had surgery for their little guy, Hudson, and he is in a body cast for at least this first month of summer. The Smiths, who were in China with us as well, are already planning their return to adopt a girl who lived with their son, Samuel. Very inspiring and humbling to be a part of this work. Thank you for being part of it as well with your support! We couldn’t have gotten through this last adoption without all of you and our much loved miracle puppy, Lucy! :) Blessings, Cheryl for the Railsbacks
