Sunday, October 23, 2016
Her first name means The Father Rejoices and her second Miracle. From the very first time we saw her picture on the adoptuskids.com website we knew that God had great things in store for her. Her story starts out with horror and pain. She was born perfectly normal, but at age 2 she suffered severely at the hands of those who were supposed to protect her. But God has made beauty out of the ashes.
This child has blessed everyone she encounters.
Last spring I made the decision to start homeschooling her. This was a huge step for us. But the big kids are all at a good place and I was confident in my role as a teacher. After much prayer we signed up for a program that would give me a coach and a team to guide us through this journey.
We started homeschooling Nesiah in February 2016. It has been one of the best decisions of my life. The incredible difference we see in this child blesses me every day. It is hard. very hard. It is exhausting. It means we stay home ALOT. But she is learning to go with the flow and we can do more and more public events.
The really cool thing that we are seeing is her great progress.
She is walking short distances with assistance. Which makes transfers and getting out so much easier. She can stand while I get her dressed. These things both have helped us get out and around much easier. My next goal is to teach her to go up several steps. She currently weighs 70 lbs and her head comes to my shoulder. I can no longer carry her.
Nesiah is eating 50% of meals by mouth. We do struggle to get enough calories so she still gets her feeding tube. Her team really wants her off the gtube formula, but feeding and getting enough calories has proven to be difficult for me. My prayer is that she would learn to feed herself. That would really make life easier for her and for us. She loves vanilla ice cream, bananas, coconut yogurt and mashed potatoes. WE have discovered that she is lactose intolerant and allergic to rice.
Nesiah can choose 1 specific card out of 3 cards when asked to choose. This all depends on her mood and sometimes she would rather choose with her chin then with her hands.
Her vision has drastically improved. She makes eye contact, watches her flashcards, recognizes favorite toys, will roll her wheelchair to the table to grab a favorite toy.
She is doing Gemiini for speech. She loves this program and will focus attention for extended periods of time. She has been making lots of new sounds. T-B- OW- and some words. She LOVES Gemiini.
She is following instructions. For example just now, Lee told me that he said Excuse me to her and she sat back so he could get through. She will also listen if we calmly and gently correct her stimming behaviors. (This is a BIG deal)
Yesterday Fayth asked her to come to her wheelchair so Fayth could feed her. Nesiah crawled to the chair for her. Later, Fayth asked her to crawl to the bedroom so she was out of the way for Fayth's project. Nesiah obeyed with minimal prompting.
Nesiah is exploring more. Yesterday her siblings were quite annoyed because she dumped out two bags of craft supplies onto the living room floor, which they had to clean up. She is reaching up on the counters and opening doors that have handles vs knobs. These have created some safety issues that we needed to address. She will crawl out the front door if given half a chance. Basement doors must be closed and locked because she can open the doors and would crawl through if not watched. She can not be left alone in the kitchen for even a minute. She moves FAST in a sort of bunny hop crawl. She stands up on her knees and is very tall, so table and counter top surfaces need to be safe for her.
She shows interest in what the other kids are doing. She wants to be at the table with us for dinner and lets it be known. She will crawl up and cuddle with me. She loves to tease, Lady the dog.
She has some bad habits. She likes to put her hands in mouth, cover them with drool and then rub them over the windows, herself, or her siblings. She loves to tap and tap at windows. She will sit by the floor grate and rub her fingers over it again and again and again. She blows snot when she feels sick. Some days her siblings get really annoyed at her behaviors. #keepingitreal
She loves horseback riding and has been doing really well at riding. She really enjoys anything that is outside.
When we did our last eval for her program, Mrs. E informed me that she had moved up one processing level. This was a surprise to me, as I felt that I was not doing as well as I would have liked with the program. The kids help with it a lot and it leaves a lot to be desired. But praising God that just being with her siblings and our meager efforts seem to be working.
But the big news. The biggest miracle yet. This child is learning to talk. She is gaining a voice.
Mrs. E has asked us to work on getting Abi to answer when we as a question. Our first goal is the word "yeah".
So the other night a friend was here, I had to run pick up my van from the garage. I asked Nesiah if she wanted to go with me. She mouth a clear "yea". We were so thrilled. The very next day at riding therapy I shared our goals. So Miss Meg was asking Abi questions.. When it was time to leave the arena, Miss Meg asked Nesiah if she wanted to go out. Abi responded with a clear and loud "yea". For the first time in since her "injury" she had a voice. She was able to express her wishes. This is a truly amazing developement.
Yesterday while taking a nap, her foot was pushed into the bed rail. I pulled her leg out and told her "Nesiah, you must say help me, when you need help". She mumbled softly "hep me".
When I was singing to her as I changed her clothes, she made clear and consistent eye contact with me. She smiled and giggled and totally interacted with me on a level that we rarely have seen.
She has mood swings and can be quite expressive of her frustration and displeasure if someone offends her. She expresses joy and loves her siblings. She shows displeasure clearly when uncomfortable.
The other week I took her to a sitter, as I went through the door, I accidentally banged her finger. She had quite the pouty face and was looking all disgusted until I stopped, rubbed her finger and apologized.
What we have seen is that there are tiny steps and the occassional big steps, but nothing is consistent.Because her brain injury makes her brain inconsistent. From day to day her brain functions at different levels. Our goal is to change her diet so that she gets better food for her brain, to excersise her brain so that it can be more consistent and to bring her processing level to the place where she WANTS things.
For now, we celebrate every little step forward.
This is the child, when she first came to live with me, I took her to meet all her specialists. The neurologist told me that at 2 years after brain injury she would never improve beyond her current level. GI told me she would never eat by mouth. Opthamalogy told me she would never be able to see.
This is the child when I took her to get evaluated for her mental capacity, they said with her level of brain injury she should not be able to sit up. She had cortical vision impairment. She would never be able to recognize or attach to her caregiver. She had an IQ of less then 10. She has the Dx of autism, severe mental retardation, Cerebral Palsy and epilepsy. But she is a child of God, a true overcomer, a fighter and an just an all around awesome kiddoe.
at 1:14:00 PM
Thursday, October 20, 2016
He loves his chickens.. Except now he has started "hunting" them with a water pistol when they scratch in my flowerbeds.
This boy.. life is hard for him. He is full of energy and enthusiasm. He is dearly loved by all his big siblings and they frequently tell him he is cute, so much so that he fully believes it and tells us too.
He is having a rough time lately. I can not pinpoint the cause. Three yr olds should not have anxiety.
He def has the three year old sass thing down pat too. He challenges me constantly. But his heart is so kind and loving.
He adores his big brothers and wants nothing more then to be a big kid. They adore him and teach him all the things that big brothers do...
Life has been a little rough lately. I was complaining the other week that life is boring... apparently God did not appreciate my complaining. Let's just say life is not boring. I do enjoy the challenges when I can stay ahead of the game.
at 9:43:00 PM
Monday, October 3, 2016
A day on the Esh Homestead:
First I overslept...I got up and had a moment of quiet time before getting the kids up. I started the shower, to warm the water for Nesiah's shower. Then I started breakfast. Eggs with leftover meat for the big kids and eggs with cabbage for Bubbie.
Meanwhile the kids kept fighting and arguing, until consequences were threatened. I turned off the shower, so that I could focus in breakfast.
I set breakfast to the back of the stove until the kids were done with chores. I showered Nesiah, washed and locked her hair, lotioned her and dressed her, then stripped her sheets and hooked up her feeding tube.
Meanwhile the kids are now eating and fussing. I laid out the time we need to leave. I ran upstairs to get dressed, quickly sorted laundry and finished some small tasks. The big kids finished breakfast, washed dishes, swept the floor and got ready to head out the door. Elizabeth negotiated with Bubbie to get him to, first pick up the shoes he had thrown ALL over the porch floor, then to change into appropriate clothes to go out the door.
We were now 30 minutes behind schedule. I grabbed Nesiah to take her to the car, while hollering at everyone else to get in and buckled. I discovered that the feeding tube had not been connected correctly and she was now soaked in nasty, stinky formula. So We halted everything, gave her a sponge bath and changed her clothes.
We were finally ready to head out the door. As I sat her into her seat in the van, her pants proceeded to fall down. Sometimes I wonder what she would say to all of us, as we hustle her through life.
First stop was the grocery store. The kids got themselves and Bubbie out, got a cart and waited for me. I got the wheelchair out, lifted Nesiah from the van to the wheelchair and positioned her comfortably.
We got into the store, Bubbie was screaming because he wanted to walk. He did not want to sit in the cart. It took a good bit of negoation to get him to sit in the cart. (I was not about to go back to the van without groceries!)
We grabbed food for us, and for our trip to the homeless shelter on Thursday.
Back to the car and we loaded groceries and kids back into the car. Home, where we unloaded kids and groceries into the house. Everyone pitched in to put away groceries.
Meanwhile, Bubbie is having a screaming meltdown because we need to get back in the car and Peggy's house is too far away!!
We need to reload everyone, and 2 goat milking stands that we need to deliver today. So we manuever, wiggle, argue, push and study the back of the van. Finally we fold down the seats in the back, two children will need to stay home, but we fit the goat stands.
We load 4 kids, 2 milking stands and stack of cardboard into the back of the van and head off to Peggy's house.
We drop off the goat stands and pick up a STINKY billy goat. Peggy advises us to not haul this thing in the back of our van, but we really have no other options. So in he goes. We roll down the windows and drive as fast as we safely can.
We get home, unload Mr. Jingles and let him meet the girls. Excitement is high! 5 months from now, we shall have baby goaties again!
Now it is lunch time.. the kids fix themselves lunch, Nesiah gets her feeding tube and Bubbie gets a sandwich and apple. I address some of the disrespect and sloppy attitudes I am getting from the crew.
While the kids eat, I design a wooden hayrack I want the boys to build. One for us and one for Peggy.
I grab a bit to eat then call the local hay supplier to check hay prices.
The kids clean up from lunch and run laps around the meadow before doing their computer time.
This afternoon, they will do their schoolwork for the day. We start a new Unit Study, which we are excited about.
I will need to finish the chili I started this morning, the beans are cooking in the crockpot, the meat frying on the stove.
The house needs to be cleaned up. Nesiah's program needs to be done.
This afternoon I also have a meeting with a casemanager for Nesiah's disability services through the county. I suppose I should change out of these billy goat smelling clothes before he comes.
My life is always interesting. The older my kids get, the more work I have, in order to keep them busy. But the sense of satisfaction that they get from seeing the rewards of their labors. The boys each made $50 on their goat milking stands. Elizabeth is excited to start her own goat herd with the stinky billy goat. Tomorrow will be a whole new adventure..
at 1:07:00 PM