I picked Elliott up from the orphanage on December 2, 2013. He was all smiles and the orphanage staff obviously loved him and were happy for him. We had a slew of appointments and that first day was pretty much hectic. We spent the next few days in Bulgaria. This was a HARD week friends. I mean hard. I missed my husband, I missed my kids, and life was full of unknowns and it was scary. Elliott liked to pull hair and broke more than one of the hotel's glasses by throwing them, he got into the trash, tried to open the hotel door and escape regularly, and I was beginning to realize that I would need to have an eye on him constantly. I messaged Todd about a day in and told him to Elliott-proof the house - put locks on doors and trash cans, buy lots of baby gates, etc... We went shopping at the indoor market one day and while I was buying tea, I realized that Elliott (who was in a stroller) had grabbed ahold of a little old lady's purse! I. Was. Mortified! The lady was very gracious and sweet, but I learned quickly that every person we passed he would try to grab a hold of something of theirs and then laugh about it. :O
We boarded the plane in Sofia on Friday morning and flew half way across the world to get home. Elliott did really well on the planes, except that he threw everything! I felt really bad for the passengers behind us, because every time the flight attendants came by they gave him something and he would promptly throw it behind him...cups, pillows, crayons, books....I had help from a good friend who mostly helped with Lance on the flights, but the very last flight I was by myself. I wanted to sob when we landed. I was absolutely EXHAUSTED and honestly worried about what this new life would look like. I waited on the plane for someone to help me deplane since I obviously couldn't carry both Lance and Elliott off. I didn't have a chance to wash my face or brush my hair and I'm pretty sure that I was a disheveled mess. I hadn't stopped to do my makeup or brush my hair since we had boarded the flight in Sofia. We were greeted by daddy, siblings, nana, aunts, and a few friends. They were all there to meet these two strangers who were now a part of our family. I wanted nothing more than to fall into my husband's arms, hug my little ones and go to bed.
That first week was hard. It was emotional for all of us. Lance needed to be fed almost around the clock, several of the kids were sick and Elliott decided that he didn't want to eat any more. The only way I was able to get calories into Elliott was to rock him and give him a high calorie bottle. (Yes, I know that he is 5 and many of you will think that is the oddest thing in the world - but to a little boy who has never had a mom rock him and feed him, he needed this and emotionally he was a newborn)
Ok....so it has been over 4 months and honestly I can laugh at the fact that my 5 year old son was trying to pick pocket little old ladies in a market in Bulgaria. I can laugh at the fact that we were charged $15 for a cheap glass at the hotel and I can laugh when I think about the little "yoda" voice that he made the whole week we were in the hotel whenever he was about to get into trouble. I look back and I realize just how absolutely stressed Elliott was at the time. He doesn't do any of those things now, and the house doesn't need to be "Elliott-proofed" because he wants SO MUCH to obey. Yes, he is a 5 year old little boy and he gets into mischief every now and then, but he is such an amazing kid! He loves to just sit on my lap, he tells me he loves me, asks if he can help me make the bed or load the dishwasher, he says "I love you Mama, I love you so much!" He gives kisses and hugs and loves having a family and we adore having him! He makes me smile every day. He loves to talk and repeats everything he hears. He wasn't walking independently when he came home and now he walks all over the place and keeps up for the most part. He counts to 13, knows most of the colors including purple, orange, black, and white...his favorite color is green this week - last week it was yellow ;). He knows the letter "R" and what it says and is learning to ask for things in complete sentences for example: instead of "glasses?" he says "Can I have please my glasses?" (yes, he says "have please" instead of "please have")
Ok, physically: Elliott has had a couple of B U S Y weeks. Let me start by telling you what Elliott was diagnosed with from the orphanage. When we first saw Elliott's file he was listed as having "Freeman Sheldon Syndrome" which is a very rare form of Arthrogryposis Multiplex Congenita, a condition which causes multiple contractures before birth. For those of you who may not be aware, a contracture is a joint that is "fixed" or stiff. Many kids with AMC aren't able to bend their arms, or their legs, or their wrists. Freeman Sheldon Syndrome in specific is known as "whistling face" syndrome because the people with this syndrome have the appearance that they are whistling. When I met Elliott last June, I was pretty convinced that he did NOT have AMC because not only were his joints not fixed, but they were actually loose. He did not have the characteristics of Freeman Sheldon Syndrome at all. However, the orphanage INSISTED that he had genetic testing done and that it was PROVEN that he has this syndrome. I learned after bringing Elliott home that the genetic test actually stated that he did NOT have that (no shock there!) So this begs the question: What does Elliott have? His major issues are tissue paper skin (it is velvety feeling, tears, and bruises easily and does not heal well), he has FLOPPY joints, and almost no muscle tone, and the most noticeable feature is severe scoliosis.
In the last month Elliott has seen cardiology, had an Echocardiogram, EKG, full sedated MRI of his spine, 4 x-rays taken 3 separate times, had blood drawn, seen the opthamologist, pulmonologist, nutritionist, had orthotics made, seen the orthopedist in Grand Junction, seen the orthopedic surgeon in Denver Children's Hospital, had a genetic test done, and finally seen the geneticist. (Not to mention the regular physical therapy appointments and pediatrician) What does all of this mean? His hips are sublexed but not yet dislocated, his heart is fine, his lungs and breathing are fine, he got glasses (which he loves), he does not have arthrogryposis, he is having orthotics made for his ankles and feet to help stabilize him and help him walk, we will follow up regularly on his hips, and we will keep working to get him to gain weight.
What DOES Elliott have? He has a connective tissue disorder that is genetic called Ehlers Danlos type 6a. This explains all of his symptoms and it is likely that his biological siblings or parents may have this as well. He was probably born with the scoliosis and it has just continued to progress. It is a rare type and the geneticist didn't have many answers for me except to tell me that there really is no way to treat his low tone, tissue paper skin, or ligament laxity. Basically - nothing changes except that now we have a name to call it ;) Our biggest concern for Elliott is his scoliosis, generally doctors start recommending rod placement once scoliosis reaches a 40 degree curve - Elliott's was close to 80 degrees when we got him in December and has already progressed about 10 degrees. It is not going to stop and eventually will compress his organs if we don't do something. Our options are very limited to either halo traction or rod placement. Right now we are trying to prolong the rod placement as long as possible (this is a 9 hour surgery and long recovery - not to mention two additional surgeries each year while he is growing) After discussing the options with several different medical professionals we have decided that our best and least invasive option at this point is to start with the halo traction. This will involve 8 screws drilled into his skull, a week in the Children's Hospital in Denver, and traction for several weeks if not months. If you aren't familiar with the halo traction set up, let me fill you in:
Awesome post Melissa! He's doing so great! You are such an encouragement to me! Love you!
ReplyDeleteThank you Winslow Gang! YOU are a huge encouragement to me and to so many others!
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