Thursday, January 14, 2016

The details of our lives.

 I am on a facebook group with other moms who have adopted from Simon's orphanage and this community means so  much to me.  A month ago, one of the members suggested that we write a post to give an update on our children.  Finally, last week I wrote something up.  I set out to answer the questions, where does your child sleep, what does he eat, what is your biggest challenge and what does your child do most days.  Well, I wrote and wrote and wrote, so by the time I was done I thought, well there is a blog post.  So here I am, a week later, finally putting it up on the blog.  This post probably has some information that is a review, but I thought I would just include it anyway, that and if I take much more time to edit it, I might not even get it posted.


First a reminder of who Simon is, Simon is 11 years old.  He has been home with us for 2 years and 5 months.  (He was 20 pounds and 1 month shy of 9 years old when he came home)  He is pretty much non-verbal, he says mama and baba and various other sounds when he is properly engaged.  He is blind in one eye, and has low vision in the other, has hearing loss that requires hearing aids.  He can “walk” with assistance, he can practice in a gait trainer but I don’t think that with his brain damage and blindness that he will ever walk without some assistive devise.  He has a wheelchair.  We struggle often to understand what special needs Simon was born with and what needs he has due to the severe malnutrition and neglect. (I am sure I am not the only mom with this question)

Secondly to answer the questions so I don’t miss them.  Simon sleeps on a twin sized mattress on the floor, which we have surrounded by bed rails.  It has been a bit but Simon has wriggled out of the spaced between the rails and made it onto the floor before, so I don’t know that I will put him in a bed off the floor unless it has walls on all sides!  We struggle when we travel finding a safe place for him to sleep because he is too big for a pack and play and I can’t afford the special needs kid pack n play (which I would LOVE).  (check out this bed)

On the subject of sleep, Simon doesn’t sleep well.  We have found a medication that works but he still goes through phases where he wakes up at 3 or 4 am and is awake until 6am and then goes back asleep.  If he doesn’t have his Clondine he will stay up ALL NIGHT.  We found he had low iron and I really think adding this supplement has helped him to sleep a bit better.  We also had his tonsils and adenoids removed as he had terrible sleep apnea, while it improved his apnea I can’t really tell how much it changed his life.  I will say that his recovery after that surgery really changed the way I look at surgery…so it changed my life! (it wasn’t good, he had lots of trouble breathing afterwards and his lungs filled with fluid and we were there for a week and almost had to leave with oxygen L)

Simon is fed 100% through the g-tube now, I wish I could say I offer him food via mouth, but I don’t.  The school spoon feeds him baby food and he will take somewhere between 6-12 bites and still holds the food in his mouth for a very long time before he swallows.  He is now “eating” packaged food called “real food blends” through the tube, insurance pays for it and it has changed our lives!!  The formula through the tube was never good for Simon digestionally, and the pressure and cost of blending our own real food was very hard.  We are happy to say he has been on the “real food” since last April and he has RARELY puked!  Which is AMAZING! 

Digestion is one of our biggest battles with Simon.  I have him on a probiotic, and we give him an isogenixs product called isoflush to regulate his constipation.  We saw a doc recently that basically told us that isoflush is milk of magnesia….and she prescribed that to us but I am scared to change because what we are doing works.  Well, it sort of works. Simon’s b.m.s are the right consistency but he still seems to have trouble getting them out at times.  Which means he is hitting himself, crying and bashing his head against the floor or anything else that is hard and near his head.  (wheelchair, my leg, couch corners).  He also struggles with gas and we have to lay him down on our bed and put our legs over his abdomen to help him get the gas out.  We have started to burp his g-button more too because recently a doctor told me that she could tell he was an air swallower and that is contributing to his gas problems…this made SO much since to me and has helped me so much.

Simon goes to an elementary school near our home from 10-4 each day.  He is in the second grade.  He spends a bit of the day with the typical children and they do a pretty good job incorporating him, I hear the kids fight over the chance to read to Simon and that Simon really enjoys it.  He has some girls in his class that enjoy walking him around and riding the elevator with him to lunch and spending time with him at recess.  (last year he got a full sized card from a girl on valentine’s day and she gave him an applesauce because she knew he couldn’t eat candy, it was the sweetest thing I have ever seen)  Anyway the rest of the time he is either with his speech teacher getting therapy or with his one on one para, walking in the gait trainer or doing therapy in the resource room.  We love his para and have enjoyed his school experience.  The school is working hard to meet his needs and is even trying to get approval for a therapy swing for Simon!

Our biggest struggle was resolved about 2 months ago, we had a very hard time pretty much May to September, Simon’s auto aggression was tearing our family apart.  There is just something so horrible about a child beating himself up, daily, and feeling like there is nothing you can do.  When Simon cries, it is just about the saddest thing you have ever seen.  When he first came home is was really quiet….his cries have gotten a bit louder, because you can hear him sobbing now, but just the breath of the sob, the cry itself is still silent.  But his sad face, is just terrible.  Anyway….we couldn’t do anything but just restrain him at times to keep him from hurting himself and to calm him down and comfort him. (another painful part of an auto-aggressive child is that when you are trying with literally, all your might to comfort and protect them, they will HURT you, I have been kicked in the neck, head butted in the neck, punched in the head, and face, all this, even after learning how to protect myself from it during the past 2 years, he has gotten me so badly, that he is no longer crying alone.)  There were times that either my husband or I would just have to leave the house to get away.  Thankfully we have a community of loving people that could give us breaks and take Simon at times. 

Anyway…things are BETTER!!!  Praise the LORD.  I am hoping to write a blog post sometime that is titled, “blame it on the rai....…..sins!!!”  Because that is what it was.  We used to add raisins to his feeds to help him poop and they were destroying his life and ours.  So we dropped those, and he got so much better!!! BUT we forgot to add back the calories and he dropped 5 pounds in a month. But we have him gaining again and he will soon be back to his high weight of 42 pounds!

So our current struggle would just be communication.  It is just so hard having a non-verbal, special kid at times.  But, I have been praying that God would help him communicate and also help us UNDERSTAND…and I have seen and felt some results.  I had moments with him where I really felt like a mom of a newborn who just instinctively “knows” what her child needs.  I am hopeful this will happen more and more.

Simon learned how to sit up and still does this using nothing but his rock hard ab muscles.  For a while Simon was really progressing physically on the floor, he was rolling over, onto all fours and he would rock, and sit back on his feet.  I really really thought he might crawl for a while there. But it has been almost a year since he has done this….He loves to grab people’s hands and show them how to hit him on the side of the face.  Most people find it very alarming at first, but it sure has been nice having him show us what he wants and let us into his stimming….inviting us to be a part of his comfort.  He has some favorite people and when they walk into a room and talk to him, he LIGHTS UP! 

I think I also struggle with feeling like we aren’t doing enough for him.  But here is the thing, just physically caring for him, is about all I can do, and it is A LOT of work.  I feel like a crazy person when a doctor asks me to add another eye drop or ointment or medication or something and I think, how in the world will I be able to do that???  We just had a cdc clinic appointment at the children’s hospital, where you sit in a room and 12 different specialists come and talk to you.  Anyway, I lost it when this occupational therapist pretty much punched holes in our lives, she used my ‘own words” and called me lazy.  She left and I cried.  I oscillate from thinking we are providing him with something great, to thinking we are the biggest failures in the world.  However, for whatever it is worth,  I KNOW what Simon came from, laying in a crib all day, completely alone, with no one to touch him or change him or feed him, waiting to die….and I really think, that if what I am doing is loving him, caring for him, keeping him clean and dry and fed and to the best of my ability, out of pain.  That it is OK for me to give him what he wants,  and what he wants often looks like letting him laying down on his back on my bed.  Perhaps for him, for us, that is enough.  There have been moments, when I change him in the middle of the night, and have to change his sheets and clothes and everything (you know those big mess moments) I feel like he looks at me and is so amazed that he will be put back in a clean, dry, warm bed. 

I suppose this therapist is just thinking Simon might grow up, might become huge and how will I carry him then, if I haven’t trained him to walk, or what will I do when he punches me in the face then?  I wish I knew what the future was going to hold for Simon.  I wish I could answer that question that so many ask, “so how tall will he get?”  “so what do the doctors think his life expectancy is?”  But I can’t.  I know that the time I have with him may be short.  I know that God saved his life by bringing him into ours.  I know that Simon has changed the lives of those around him by sharing his story.  I know that Simon’s story has caused some pretty incredible ministry opportunities that would not have been possible without him.  I know that his story has given hope and healing to many in my community and church.

Well, there was a long report.  All in all, we are doing well.  Simon is back to being a pretty happy guy.  He is back to being so giggly and over stimulated, at times, that it is hard to change his diaper….but knowing the opposite, where you can’t change his diaper because he is bashing his head into the floor, well, I will take a foaming at the mouth, happy, Simon any day. Hands, down. (now I just need to remind myself of that when I am trying to get him ready for bed and I can’t get his diaper or his pants back on)

Here is Simon in his NEW glasses!! 
I took these pictures because Simon had had a wonderful day at school.  He had worn his glasses and hearing aids all day without trying to take them off.  He also took 31 bites of food...his all time high EVER.  Normally he eats like 31 was crazy!