Today I'm going to outline our basic day with Evan. Later on I will write up individual posts describing different parts of Evan's care in more detail. The one thing I really want to emphasize is how manageable things are. Our days are easy. Caring for Evan is easy. Providing what he needs is not an arduous task. We add some tasks to our daily routine and we do some things a little differently for him. Then we get on living our awesome life!
Let's start with waking up in the morning! Evan shares a room with Theo and Barton. They wake up a little earlier than he does and start their morning routines. Once they are ready and out of the room, I go in and get Evan ready for the day. I can tell if he is up earlier than usual because he will tap on the side of his bed to make noise and then laugh. He loves that sound!
We change him and get him dressed. He giggles through the whole thing. When he first came home he would sometimes enjoy getting dressed and sometimes find it uncomfortable. Now he always loves it. I talk through the whole process with him and we do some stretching to loosen up where his muscles have gotten tight from sleeping.
This is Evan's bed set-up.
You might notice that he uses a daybed turned around against the wall. Different people use different beds. Some kids need fully enclosed special needs beds. Those are really cool! Some people use larger beds with regular safety rails. Other people use beds that are just about at floor level. It all depends on the needs of the particular child and family. We've tried a few different arrangements for Evan, and the daybed has been absolutely great. I can still lift him over the higher side rail at the weight he is now, but we can also pull the bed away from the wall to have access at an easy height for changing and dressing. I also pull the bed away from the wall and use the space on his bed as an exercise table for some of our therapy work.
Evan loves to work hard on getting stronger!
He takes a few medications. Medications are a really simple part of our routine. I drop the pills or tablets on top of his food and he swallows them easily. He takes a bottle of applesauce or juice with Miralax mixed in. He takes baclofen three times a day with each meal to help his muscles move more easily. He takes Prilosec for reflux once a day. He takes vitamin D once a day. It's all very easy once you're in the habit.
After breakfast the older kids do their showers and Evan will also get a bath if he needs one. While the older boys are getting cleaned up, our other kids start their homeschool work. Evan participates too! We do fingerplays for nursery rhymes and I help him through the motions. He listens to stories and music with us. We are working on expressive communication with Evan. He understands more than he can communicate, but we don't know how much more he understands. One of the foundations of our education for our children is exposure to beauty and exposure to great ideas. That is key for how we involve Evan in our days. Regardless of where his level of understanding is, Evan is given the chance to experience the same things. He is there relaxing on the couch or in his favorite big chair. He will sit there and listen to me read aloud, listen to classical music with us, listen to audiobooks while the other kids color, or watch educational tv. We also do his therapy work. He will laugh and get very excited when we ask him if he wants to do some of his favorite activities. Other things, like asking him if he wants to brush his teeth, don't get the same enthusiastic response!
We usually do an easy lunch in the afternoon. Evan will eat pasta or rice in sauce. He loves sweet potatoes, which are a frequent item on our lunch menu. Sometimes we add peanut butter to his for extra calories. After lunch we play and learn a little more, followed by a little quiet time. All of the kids do quiet time, but not all of the kids sleep. We leave a few toys in Evan's bed with him, but most of the time he will be tired and ready to rest. The other kids will finish up their schoolwork in their rooms, look at books and magazines, color, or play quietly. Quiet time being part of our routine is a sanity saver! Sometimes the meal helper will stay out and help me get dinner ready, but most of the time it is also a little quiet time for me to recover from the busy first half of our day!
Typical meal plus meds. Super easy! Plus that other daily necessity...my coffee.
After breakfast the older kids do their showers and Evan will also get a bath if he needs one. While the older boys are getting cleaned up, our other kids start their homeschool work. Evan participates too! We do fingerplays for nursery rhymes and I help him through the motions. He listens to stories and music with us. We are working on expressive communication with Evan. He understands more than he can communicate, but we don't know how much more he understands. One of the foundations of our education for our children is exposure to beauty and exposure to great ideas. That is key for how we involve Evan in our days. Regardless of where his level of understanding is, Evan is given the chance to experience the same things. He is there relaxing on the couch or in his favorite big chair. He will sit there and listen to me read aloud, listen to classical music with us, listen to audiobooks while the other kids color, or watch educational tv. We also do his therapy work. He will laugh and get very excited when we ask him if he wants to do some of his favorite activities. Other things, like asking him if he wants to brush his teeth, don't get the same enthusiastic response!
As you can see, Evan has no shortage of brothers and sisters to cuddle with on the couch. One on the left!
And another on the right! Everyone loves to play with him and sit with him.
As quiet time finishes up and dinner is almost ready, the kids start coming out and cleaning up around the house. Evan will usually be up by then and ready to go! I will give him a small meal or snack while dinner finishes up. A can of creamed corn mixed with mashed potatoes is one of his favorites around this time. It only takes a couple minutes to get ready, and it keeps him content until dinner is finished. With his background of being hungry, he will get upset and cry if he thinks he will have to wait to eat or if he thinks people are eating without him. We try to give him something ahead of time so that he knows he will be taken care of. When he is done he will play on a mat in the living room with the other kids, or sometimes everyone gets to watch something educational until dinner is served.
Evan's snack and a little more coffee for me!
Evan eats most of the same foods with the family during dinner now. His portion is usually cut finely or has some small substitutions, but he has no problem eating it. Last night he ate pulled pork, mashed potatoes and applesauce when the rest of the family ate pulled pork sandwiches with salad. The night before he ate finely cut chicken, couscous and green bean casserole just like the rest of the family.
The other kids finish eating and clean up, then play for a little while before starting their bedtime routines. The older kids stay with me for a little while longer while the younger kids start their showers. Then the older kids head to bed too. Evan and our youngest get to stay up a little later than everyone else. It started out that Evan needed more time sitting upright after he finished his last meal due to his reflux. Plus he loves staying up! That's probably part of why he sleeps in some mornings!
Now, this is a typical day for us. In reality, every day is different. Our life requires our days to be flexible and fluid. Some days are just like this, a few are devoted to doctor's appointments and others are spent relaxing and playing when my husband is home. Evan fits into it all with ease.
These are other kids whose lives would be so much better if they were in your family. They can change your life for the better too! Evan is such an incredible part of our family. I want these children to have the chance to have everything that Evan has here with us. If you are interested in more information on any of these children please contact childinquiry@reecesrainbow.org ASAP. They all need families as quickly as possible.
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The first is Phoenix. I love this kid. He loves to cuddle and his giggle just rocks. We spent time with him two years ago, but he has been transferred to a different institution. He was very unhappy in the latest video I've seen of him. It was such a change from that sweet smile we saw when he would play on the floor in the playroom at the old bedridden building he used to be in. He has so much potential! One of the charity-paid caregivers had been trying to teach him to stand and walk! He is not taken out of his crib now as far as we know. He would make a lucky family so happy! Please see this incredible boy. He was on our short list of kids we considered adopting, but we have our limits. He can't keep waiting. He is already 14, even though he is the size of a much younger child. He is eligible for a $10,000 older child grant!
http://reecesrainbow.org/59329/phoenix
http://reecesrainbow.org/59329/phoenix
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Next is Marla! Marla has been waiting for a long time as well. If you look at this series of photographs you can see how her condition is worsening over time. Her future is grim. I'm worried about Marla. It is very difficult to get updates on many bedridden children. Some institutions don't see the point in providing information on children they don't consider worth adopting. Once children have been transferred out of baby houses, the updates and information usually stop forever. If a family steps up for her they might be able to get more information! Sometimes facilitation teams are able to get updates on children as they process the family's paperwork before the family arrives in-country. More information or not, we already know that her situation is incredibly urgent. She looks like she has such a sweet spirit trapped in that crib, but she can't continue to survive without a family. She has some great people working hard to help her grant grow! Right now it is at $5931.
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This is Posey. Posey is beautiful. She has a very special place in my heart.
Two years ago when we were in-country, one of the older girls in the bedridden building reminded me so much of Posey. "T" was too old to be adopted. She was very thin. She was blind. I don't know what her life could have been like if she hadn't been sent to an institution. I know that there were many children in the documentary Bulgaria's Abandoned Children who were blind. (Go find the documentary on youtube and watch it. It is life-changing. Perspective changing. Watch Ukraine's Forgotten Children too.) The children gradually lost skills the longer they were kept in the institution. "T" had lost so much by spending her life in an institution too. She was in a bed rather than a crib, but that bed was her entire world.
Two years ago when we were in-country, one of the older girls in the bedridden building reminded me so much of Posey. "T" was too old to be adopted. She was very thin. She was blind. I don't know what her life could have been like if she hadn't been sent to an institution. I know that there were many children in the documentary Bulgaria's Abandoned Children who were blind. (Go find the documentary on youtube and watch it. It is life-changing. Perspective changing. Watch Ukraine's Forgotten Children too.) The children gradually lost skills the longer they were kept in the institution. "T" had lost so much by spending her life in an institution too. She was in a bed rather than a crib, but that bed was her entire world.
Posey was in the baby house in the same region. Her younger photo reminded me instantly of "T." If Posey was not adopted, she was destined for the same fate "T" had been sentenced to so many years before. "T" was transferred with the other bedridden children to the new institution while we were there. Time passed and Posey was not adopted. She was too old to stay at the baby house. She was transferred as well. Right now Posey and "T" are in the same exact room, maybe ten feet apart. I prayed so, so hard for Posey to be spared before transfer, but she wasn't. Unlike "T," Posey can still be adopted. She still has a chance. But she needs a family right away. If she is not adopted she will stay in the same crib, in the same room as "T," until they both die. I'm holding onto hope that even though "T" will never escape, Posey still can.
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Lastly for today, this is Athens. I look at Athens, and I see a boy who could do incredible things in a family. He looks like he could make a stunning amount of progress with therapy. He seeks out toys and looks like he can manipulate them really well. Athens' time is spent either in his crib or laying on a beanbag or on the floor in a room with about a dozen other children with various special needs. He is one of the smaller and less mobile children in that group. I think Athens would really flourish with attention and care. His smile just shines and he has such dark, handsome eyes. I think he would be capable of so much in a family.
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have you heard of the fundraising organization called "adopt together" I just saw an article about it in people magazine, would it be of help to you?
ReplyDeleteI will look into it! Thank you!
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