Sunday, October 4, 2015

Where We Are Today.

Today, I am going to do a little update to let everyone know how we are doing lately. Our life is always busier than the average family but God is always faithful and true.  I am so grateful that He carries us and gives us strength to do what needs to be done.
I guess I will start with an Antonio update.  Two weeks ago Antonio had a huge set back.  He, over the course of three days, slowly reverted back to the way he was just after the Botox injections.  He could not smile, eat, talk or move his body.  I took him back to the neurologist.  This neurologist is at a loss.  He has never seen this with Botox before.  They did another CT scan to rule out a shunt failure and more blood work to rule out infection.  All came back normal.  He is scheduled to have an EEG to look for seizure activity.  He has never had seizures before, so I feel this is not an issue.  I was so frustrated with this neurologist after the appointment.  It is plain, before his face, as to what has happened and he will not say it and admit it.  That limits the amount of help I can get for Antonio, as his insurance is going to want a reason for his decline in health when I request therapy, to help in his recovery and building strength.  I was so angry with this doctor, that I did some research on my own, on the internet.  I was not surprised in what I found.  There are so many people out there, that are going thru the exact same symptoms as Antonio after Botox and the other brands of botulinum toxin shots.  There are many support forums for people damaged by Botox and other botulism toxin injections.  So many people who have horrible symptoms.  Some damaged for many months, some for years and some people who have been permanently damaged and are on disability.  Some people have even died. 

I went to Antonio's pediatrician and spoke with him about Antonio. He said Antonio has all the classic signs of Botulism/Botox overdose.  That it could be up to 48 months before Antonio could be over all the symptoms he is having.  There is nothing that can be done, except for supportive care, till this clears and passes, if it does.  Sigh.  I am so sad for Antonio.  He has always been such a smiley, bright, happy, chatty, young man.  As of today he still can not smile.  He tries to communicate a few times a day and it comes out as a mumble.  I can sometimes understand him but if I missed it, he does not repeat himself.   He can say ya and no but it takes him about 20 seconds to answer me, if he is going to.  He can lift his arm for a moment and move his head from side to side.  He is weak.  We are very concerned for his health heading into cold and flu season.  We are trying to keep his life the same as always, as he is aware and in there.  We are still taking him places and changing his view and environment throughout the day.  Putting in different movies for him, letting him watch his animals and watch the children play.  I will never let him have another Botox shot of any kind.  I just pray for his healing.  For this toxin that is trapped in his muscles to clear from his body.  For the weakness and damage to be healed.  Bless his heart.

William working on his animation videos.
William is doing well.  He has been a great help and support thru the last few months.  He has stepped up to help with the extra care with Antonio and helped do many of Carolyn's chores while she could not.  He has watched children for me so I could devote time to the children who have needed me most and also so I could take children to their doctors appointments alone, so I could really pay attention to what was being said and ask the questions I needed to.  God bless William really well.

Carolyn is doing much better since having the fall that knocked out her front top tooth.  She is in very little pain now and can chew soft foods in the back of her mouth.  So no more pureed food.  Yeah!  She still can not bite using her front teeth, for quite a while, to give her tooth a chance to reattach.  She is back to doing ballet and her normal chores. 
She is going to start riding her pony again once the weather gets better.  It has been a bit wet and rainy here lately.  We also got her results from all the testing that was done by the psychologist.  We learned a lot about Carolyn and can now make the best plans for her future.

Zeke is about to be tested with the school system to see if he qualifies for the autism program, that they have at a school close to us.  They all feel he will qualify.  They have one teacher and five students in it right now.  Tim and I have not decided if we will send him a few days a week or full time.  We are in prayer about it.  We have talked to him about it little and he was emotionless. He is flaccid most of the time, so that was not surprising.  I am praying he will like it and maybe make a friend or two.  He still spends a lot of time making videos as well.  He is such a wonderful young man.  We love him so much and want the world for him. 

Elizabeth has started back to ballet as well.  She is going one day a week and we have a ballet tutor come out to the house one day a week to work with the girls.  So lots of ballet time.  She is still struggling with her behavior and school work.  She has gone thru a growth spurt and is much taller than me now.  She is only 12 so she is going to be tall!
Billy is doing very well lately.  I have started measuring out his meals, by calories, to try to help him have smaller meals and not take so long to eat.  I am also giving him mostly foods he eats faster so he has time to play.  I am hoping to get his mealtimes going faster, so I can start to home school him some this winter.  He is amazing smart and really ready for this.   His behavior has also improved over the last few months.  I can now often give him a warning and he will reconsider what he was going to do.  Praise God! that is wonderful progress.  He is still very active and easily distracted but trying so much harder.

Timothy is doing so well lately.  The whole time we have had him, he has been stuck, in his mind and actions, as a 15 month old child.  He is very immature and unaware of life around him.  In the past few weeks he is starting to put two and three words together and acting more mature.  He is understanding so much  more.  I am praying this will help us in the potty training area, as we have been potty training since February faithfully, with no signs of him making any connections in his mind.  He is finally clapping when he goes in the potty and is aware when he goes.  I know...the simple things in life make my day.  :)  He is still so far behind, in so many areas but Praise God, is starting to make progress now.  He will be three soon, my sweet boy.

Kinsley is doing nothing short of amazing.  God has done such a wonderful work in her life and health.  She is walking!  15 steps is her record right now!  She is eating diced foods and self feeding.  She is cutting her back  molars right now, so that will open up a whole new world of foods for her, as she will be able to really chew instead of just gumming things.  She sleeps thru the night and acts like a toddler in so many ways.  She is behind but progressing steadily.  She definitely has vision issues but her vision is functional in our home environment and will smile at me if I smile at her.  Her right eye has very few optic nerves but her left eye has almost all of them.  So I think she is seeing pretty well with her left eye.  She tips her head a lot when she is watching tv or looking at a book.  She is a joy and our sweetie pie.

Baby "A" is growing fast!  She just turned five months old!  Where has the time gone!  She has rolled over a few times and will stand in her little play saucer.  She sleeps thru the night and takes four bottles a day.  Three meals and a bed time bottle.  She still has anxiety and has intense crying spells but not nearly as often as when she was younger.  It is mostly when she is out of her environment, around new people and when she is over tired.  Evenings are the hardest for her to settle down for sleep.  She still has nursing issues and has trouble latching on her bottles.  She has reflux, gags a lot and has sensory issues in her mouth.  She only eats for me.  If anyone else tries to feed her she screams.  When I do have to be away and Tim tries to feed her, it take him an hour or more.  Her biological mom is out of jail and baby "A" has been having twice a month visits with her.  Sadly, her mom has done nothing on her case plan at all.  Baby "A" has a panel review this month.  I pray for salvation for her mom and that she makes better life choices.

We as a family are doing fine. 
I can see that this fall, life is going to settle down some and we will have a better routine.  I think we need some home time and good solid quiet time together.  Now that I don't have a very young infant anymore and "A" has matured and grown some, I have times when she is playing and not needing me to feed her every few hours.  So I am getting some things done around the house again.  I am even feeling up to making some homemade meals again for supper, which has been nice for all of us.  Tim and I are also getting better sleep, as we, for the first time in a year and a half, don't have any children sleeping in our room anymore.  I am a light sleeper and every little baby noise wakes me.  It is now very quiet in our room and Tim and I are enjoying being able to watch a movie together, on movie night again, in bed together, with out worries of waking a sleeping baby.

The weather is cooling and we are going to take the next nice week off from school, to winterize the property.  Things like clean out the whole barn and get more hay, have the chimney cleaned and stack wood on the back porch, clean out all the flower and vegetable beds and put manure in them all, cut all the brush down along the fence lines and things of that nature.  I have started fall cleaning inside of the house already.  It feels good to purge out a lot of things we don't need and use anymore and de-clutter a bit.

God is so good to us always and life is good.  We will always have things going on here to work thru and things that need serious prayer.  It is part of having such a large family, with many children that have varying needs.  We always feel blessed and feel God helping us.

May the Lord God in heaven, reach His mighty hand down to help you in the areas you need Him.  May He lead and guide you as you live and grow in Him.

John 1:14  And the Word was made flesh, and dwelt among us, (and we beheld his glory, the glory as of the only begotten of the Father,) full of grace and truth.




  1. Oh Antonio my heart breaks for you. We are praying. That picture made us all cry. Darn Neurologist. We have run into similar problems. Once I was at PT with Molly and the lead PT woman said she saw Molly's Dr at a function, and he had actually talked about a "case/patient" and she knew it was us. He told the PT that he screwed up. We had complained to him about an OT who had destroyed her AFO's and he said couldn't say anything or the OT place that ruined them would get in trouble. So when we showed him them at our visit he just shrugged and said they were o.k. when we needed them re-done??!! So its true you can't really trust all of them. I wish it wasn't so political and so much "back watching". Jacob's Neurologist refused to say anything bad about Jacob's experimental surgery, even after what they saw shocked them. :o( I have to remember hey are human like us. :o) But as parents we still have to fight to be heard!
    I know how hard it is when a helper can't help! I'm so glad Caroline can help out again! :o) And so glad the tooth is still in there!!! Kinsley is amazing! And cuter everyday! Baby A is looking so much like her birth brothers- cute!!
    All of the children are so precious! The kids here loved seeing Wiliam working on his movies! They tell everyone about William's movies. They are fascinated by them!
    (((((((((((HUGS)))))))))) and prayers :o)

  2. Thank you Elizabeth for all your prayers. We appreciate them so much. We are praying so hard for Antonio's complete recovery no matter what the doctors say or do. That God, the One Who Created him, will reach down and touch him and make him whole again. I KNOW you understand. I know you have been thru so much with the children you have had as well. It is just hard to go thru it sometimes. I do think this neurologist is afraid to say anything. Carolyn is back in action Praise God and such a big help again. They were able to wire in her tooth to give it stability. She has gotten bumped a few time in the mouth by the toddlers but Praise God, not hard enough to hurt her tooth or mouth. Children are quick and active! William did a short video for Coffee day recently. He is very creative. I am so glad you all enjoy his work. He puts a lot of time and effort into what he does. It is an art form for sure. Love and blessings from us all!

  3. I was thinking of you much of the day yesterday and wondering mostly about Antonio. My heart broke too in seeing his picture.... yes, a noticeable difference from his other pictures, : ( I'm so sorry about the troubles you are going through with the doctor, etc....

    I agree with Elizabeth that Baby A looks like her brothers. Just look at that curly top, blonde hair. : ) I'm glad to hear that you are getting some sleep and time with your husband. I am the same way too... I can't sleep worth a darn with a baby in the same room. I wish I could!

    I'm so glad to hear that Carolyn is coming along with her tooth and the boys are keeping busy and enjoying themselves.

    1. I think of you often as well and pray for you all. Busy lives for sure! I appreciate all the prayers and encouragement! Have a blessed day!