Monday, October 27, 2014

Williams Faithful Dog Will

When our son William was eight years old, he came to me one day and asked if he could have a dog of his own.  I was taken aback as he had never expressed any kind of desire to have one.  He was a boy of few words back then and could not express himself fully.

I explained to him the huge responsibility of having his own dog.  He would have to house break it.  That meant getting up all hours of the night if it needed to potty.  He would have to love it, spend time with it, teach it, and care for it, every day for the rest of its life.

Then I went on about the cost.  If he wanted a dog, he would have to pay for it.  He would have to pay the pound fee and pay to have it fixed.  He would have to buy the food every month, a crate and all the things dogs need.  William said he had been thinking about it for a long time and really wanted one.  I never discourage the children from having pets.  I believe when the children are mature enough to have them, a pet teaches them more than I could, about life, responsibility, love, compassion and loss.

I told him if his dad said yes, he could have one.  We drove by Tim's work and William asked his dad.  His dad went thru the whole speech I had just given him.  Then his dad said the words I did not think he would say.  He said if you have counted the cost, are willing to take on this responsibility and can afford it, you may.  I was amazed to see William had counted the cost and had enough  money.  Back then he used to raise silkie chickens and pigeons and sell them, as he was saving up for a VW bug.  He was frugal and stingy but ready to part with the cost, to buy and have a dog, for a companion.

Next thing I knew we were on our way to the pound.  On the way there he described to me exactly the dog he wanted and what it looked like.  I told him that we never know what will be at the humane society but could keep checking back till he found the dog for him.

When we got to the pound there was cage after cage of large dogs and a large litter of dash-hound puppies.  He slowly looked at every dog and the litter of puppies and said he did not see his dog there.  I tried to steer him toward the tiny dash-hound puppies but he has always been a child that knows his mind and said he did not mind waiting to find his dog.

On our way out he described the kind of dog he wanted to the director.  A very fluffy, smallish dog, with lots of energy.   He left our phone number so she could call us if any dogs came in that looked like it.  As we turned around and were about to leave, a lady came in with a little dog in her arms.  She walked straight up to the director and said she had just adopted this dog earlier this it home and bathed it and realized she would rather have one of the dash-hound puppies.  She asked if she could exchange it.  The director said yes and took the very fluffy dog from her arms and walked into the back area and put the dog in a kennel.  William didn't take his eyes off that dog and followed the director back.  He asked if he could hold her.  He looked at me and said...This is my dog!  I asked if he was sure and he said yes. 

So we filled out the paper work and went to pay the adoption fee.  I told William to get his wallet out and the director he paying for this himself.  I said yes and so she said he only had to pay half of  the adoption fee. 

William named his little female puppy Will, after himself!  So funny what kids do.  That week, in the news paper, under the pound dogs of the week, up for adoption, was a picture of Williams puppy and its female litter mate.  So I guess the litter mate had gotten adopted as well as we did not see her there that day.
William asked me to cut the picture out of the news paper and put it in a frame.  It has been displayed in his room every since.  His dog is the one on the right.
William and Will were a perfect match. 
He house broke her on his own.
Standing outside all hours of the night to wait for her to potty. 

He showered her with special beds, healthy more expensive food, and lots of love.

They spent just about every day, all day long together.  He did his home schooling with her either on his lap or she was by his feet. 

If he left to go outside, she faithfully would sit at the door till he returned. 
They were the best of friends.

She has not been an inexpensive dog. 
She had a very tender tummy and had to be hospitalized several times because she ate something, she should not have, that fell from the table before William could get to it.  She has had to have several surgeries over the course of her life but William never complained. 
He just paid for it, loved on her and took care of her and in return, she was so loving, playful and loyal.
I enjoyed grooming her.
I always wanted to do a traditional Schnauzer cut on her but William had his own ideas every time.  He wanted her beard, ear hair and tail hair long and silky.  He liked the hair on the legs left longer too, sometimes shaved into poodle pom poms in the summer months.  
Reading together.
Good company while building with legos.

About a year ago his dog started to have no appetite and would get sick on her food.  We have had lots of blood work and tests done over the last year to no avail.  Always sent home with an appetite stimulant and advice on what to feed her.  Her weight kept slowly dropping.  William started cooking for her as that is all she would eat.  On September 7th we once again took Will in to the vets office as she was not doing well.  This time, what the vet told us, was such a shock and so unexpected.  That Williams dog, Will, had a huge tumor in her abdomen attached to many vital organs and it was inoperable.  We were told she had maybe days to a few weeks to live.  It was very sad news for me but even harder to see my tender hearted William bare the news.    

One of the hardest things to deal with in life is loss but grief is the worst.  To love deeply and not hold anything back and then bare the loss of that love physically here on earth, heart aching pain.  There is no easy way to navigate it.  No easy way to get thru it.  No easy way to bare it.  We were not created originally to feel sorrow.  It was a perfect creation and world till sin entered into it.  At that point everything changed.  So loss hurts.

Today Williams dog died.  I praise God that he had the gift of loving such a wonderful dog.  I am so happy he has all those years of happy memories as he grew up with her in his life.
The day he found out she was so sick.
I am also so grateful that God gave William 50 more days, from the time of diagnosis, with her, to spoil and love on her, as her body failed.  He gently and lovingly has cooked for her five times a day so she could eat smaller meals more often.  He has carried her out to potty and back into the house.  He has given her countless baths and done lots of laundry as her systems have failed.  He has taken those days and just sat with her on his lap enjoy her and helping her die.  Today, he and his Papa dug a whole in the earth to place her body.  What a hard thing.  She was worth it.  She was a great dog and will be missed so much.

Thank you God in heaven for Williams dog Will, for the 10 wonderful years she faithfully was his companion and friend.

Monday, October 20, 2014

Happy Birthday "T"

It is so hard to believe that you and your big brother have been here eight months already!  It is an honor to have you here for your birthday.  We are so blessed, to get to share the birthday that you turn two years old, with you!

In the past eight months you have learned, grown and matured so much! 
The day after you arrived.  Your first nap here.

You were so behind and so angry at the world when you arrived.  You had every right.  I can't even imagine the things you have been thru and seen in your short life.  The few things I was told by DFCS made me so sad and then angry.

What a miracle it has been to watch you change from that withdrawn and tantruming little guy, to this very happy and normal two year old. 
You love puzzles!

You make me laugh every day with the things you say and do.  You have bonded nicely into our family and love to be sang to and rocked every day, as you fall asleep for your nap.  
You fell asleep on William while watching a movie together.
If I run my fingers thru your thick curls, you are asleep in just a few moments.  You are cuddly and love to be held.  Jesus Wants Me For A Sunbeam and Twinkle Twinkle Little Star are your favorite songs.  You ask all of us to sing them all day long.  You have a bit of temper with that red hint to your hair!  But it is quickly gone and your bright smile returns once again.

We took you to Chuckie Cheese this year for your birthday as we don't know if you will be with us for another birthday and we wanted it to be special. 
You knew that this was your special day and that we were there for you!

Aunt "S" made you a Cookie Monster cake! 
Thank you Aunt "S" for your kindness to the children, in blessing them with a special cake for their birthdays.  "T" loves Sesame Street and that cake made his day, as well as the dinosaur you and Uncle "B" gave him. 
He has been feeding it almost non-stop!

Jeremiah 17:7-8  Blessed is the man that trusteth in the Lord, and whose hope the Lord is.  For he shall be as a tree planted by the waters, and that spreadeth out her roots by the river, and shall not see when heat cometh, but her leaf shall be green; and shall not be careful in the year of drought, neither shall cease from yielding fruit.

May the One True and Only God in heaven...Maker of heaven and earth and all that is therein...make sure there are Christian mentors in your life, your whole life thru...May you be greatly used of God, spreading the gospel of Jesus Christ to all you  meet and May God bless you and keep you all the days of your life.


Dad, mom, Stephen, Antonio, William, Carolyn, Zeke, Elizabeth, "B" and baby "K"

Saturday, October 11, 2014

Hypoplasia of the Corpus Callosum

Baby "K" came to live with us in the beginning of June as a foster placement.  The only thing we were told is that she was born to a mom that used meth heavily thru her pregnancy.  That she was born three weeks early.  That she spent two weeks in the hospital detoxing and that she had reflux, trouble nursing and maybe some vision issues.  In a very short time of her being here, I could see she had a lot of other serious things going on, bless her heart.

She is as sweet as a baby can be.  She is actually the best baby we have ever had.  She is happy and content.   We love her dearly.  I have been doing therapy with her, on my own, since she came, thinking if she just had a little help, she would progress and catch up.  When she turned three months old I realized that we needed to seriously look into a possible cause and diagnosis to explain the issues she is having.  Not that I am a parent that likes to put a label on a child but if we know exactly what her diagnosis are, we can help her progress better and insurance will pay for more therapy and equipment, if she has a concrete diagnosis they can't argue with.  So we started down the long road of going to specialists and running tests.  Crossing things off the list and adding more to check out.  Many times one appointment leads to one or two more.  She is very worth it.

We are still in the middle of appointments and tests but I wanted to share with you what we have found out to date and what she is doing.  This is not only an update for family, friends and for people considering doing foster care but for people out there whose child has been given this diagnosis and would like to compare notes and glean, information So this is going to be a very long and boring post many people may wish to skip.  :)

When baby "K" came,  the first red flag I noticed, was her very low muscle tone.  This is called Hypotonia.  I was very concerned about this, as it was so low, that when I dressed and bathed her, her joints would pop, creak and slide in and out of place.   My husband and I also have to be very careful when we handle her, as she is very floppy and her arms and legs move into unnatural positions and can easily get hurt, if we do not constantly pull her arms into a more natural place when changing diapers, feeding her and playing with her.

This tone is so low throughout her whole body, it is effecting her ability to urinate, have a bowel moment, swallow safely, keep her tongue in her mouth, keep her formula down, and progress to meet expected milestones.  I have been working hard with her daily since she has been here, patterning her how to roll over and she rolled over at four and a half months and still can't do it regularly.  She only started cooing at three months old and has not done that consistently or dailyShe just started to coo at me when I talk to her a few days ago at five months, one week old.  She can hold her head up now for short periods and pick her head up while on her stomach for about 10 minutes.  She can sit in the Bumbo chair or be in her jumper now for about 15 minutes without fatiguing.  

She is still struggling with her eye sight.  She only acknowledged light and dark till three months old.  Then started to be able to track large objects in a distance, with light behind them, like a person walking by but it was very delayed and slow.  Then, at four months old, she started looking toward our faces and smiling.  She does look at our eyes some but mostly slightly above our face, kind of at our fore head.  Now at five months two weeks, she can track an object if I wiggle it but have to move it very slowly and she does not follow it smoothly and tracks very delayed.  We are grateful she has some vision!

So far we have taken her for evaluations in Physical, Occupational and Speech therapy and she easily qualified for all of them. I actually had her evaluated as soon as she arrived as I saw the tone issues she had and knew from past children with this, that she would need to get started in therapy right away.  I am so glad I did that, as she is still not receiving therapy yet three months after qualifying because of paper work with government insurance taking so long to approve it.  So in the mean time, I am still working with her here at home. 

We took her to a pediatric ophthalmologist and her eyes and optic nerves looked perfect, Glory to God!  He said she either had Delayed Visual Maturation where her vision is just very delayed in maturing. OR... Cortical Vision Impairment where her eyes and optic nerves are perfect but her brain is not interpreting what she is seeing properly.  From what I have read, people with CVI can have holes in their vision like looking thru Swiss cheese, have only peripheral, only tunnel vision or a mix of it all. On top of that, they also see as if looking thru a Kaleidoscope.  They can learn to use the vision they have by viewing things very close up, so they have less clutter in their field of vision for reading or eating.  They also can learn to see in familiar environments but when out in public, with so many things changing all the time and so much clutter in their visual fields, they are legally blind and have no depth perception and need help.  So we are waiting to see what the verdict is on that.  She also has Strabismus.  That is where the eyes don't line up in the same direction.  Hers both are outward.  She may need surgery to correct it.

She was also sent for an MRI.  The MRI was scheduled to see if she had birth trama (an area of brain damage caused by oxygen deprivation during delivery) that is causing her low tone, eye issues and any number of other things she has going on.  There are many things that could cause these issues such as a syndrome.  So we needed to start somewhere to get answers.

What was found out is that she has a very Thin Corpus Callosum.  The proper medical term would be Hypoplasia of the Corpus Callosum.  The Corpus Callosum is the bridge, consisting of over 200 million nerves, that the two halves of the brain comunicate thru.  So her bridge is very small and the two halves of her brain are not able to communicate properly in a lot of areas.  I guess like trying to meet the electrical needs of a large city on a small country towns lines.

From what I have gleaned from hours and hours on line, is that HCC and other Corpus Callosum issues are a wait and see thing.  No one knows the full potential of each child with it.  It effect everyone differently.  All the way from mild to profound.  This is a hard thing to hear, for loving parents that want to know what level their child will function at in the future.  Or for those that find out while pregnant, and are trying to decide whether they should continue with the pregnancy...  :(

To make this whole thing even harder to understand...some adults have had MRIs and found out that they were missing either part or all of the Corpus Callosum and are fine or have had just mild struggles their whole life and didnt know why till the MRI was done.  Others...need total care in all areas their whole lives.  Wow...there is just so much we don't know or understand about the human body and how it functions.  

The good news is that this condition will not get worse.  So the level a child is at, they will not get worse or regress because of this.  Many of the children that have this though, also have a syndrome and that can cause issues.  Also, a child born with this, can develop seizures any time in their life.   

A good thing is, that God made our brains so amazingly well, that through lots of therapy, the brain halves can be taught to work together and either use another path, make a new one or do without to get a task done such as co-coordinating walking.  A whole new area of the brain can take over to compensate.  So huge delays in development are expected with this diagnosis but progress in many can happen.

So what do we know?  That baby "K" has HCC for sure.  That she does indeed  have many huge issues from it.  That Glory to God she is progressing, just very, very slowly.  This is very encouraging!  That she also has some vision issues going on that could complicate her progress.  That she is cute and sweet and we love her so much!  We are going to do all we can for her as long as she lives with us!

What do we still need to find out?  Does she have a syndrome that this is part of or is this from drug exposure?  We need to find out her exact diagnosis with her eyes and how well she can see so we can add vision therapy if needed.  If she has any abnormalities in her urinary tract causing her the issues she is having. (urinating only once every 8-12 hours or so or is this from low tone.

I guess I have not really clerified anything for anyone, as the diagnosis can be so different in everyone.  But as I did my research on the internet, there is a ton of information out there on people either missing some or all of the Corpus Callosum but hardly anything out there on people with a thin or Hypoplastic one.  I have read countless blogs on babies, children and adults with missing or partial missing CC's but hardly any stories of children with HCC like baby "K".  I just wanted to see what those children were like when they were born, how they functioned and how they progressed.  Just like any parent wants to read about when facing this.  So I thought I would write this post and try to put in all "K" can do and at what age, what things she has going on medically and the road we are taking to unravel it all.  Maybe it will be helpful, encouraging or comforting for others.

If you have read thru this far, thank you so much for hanging in there with this lengthy post and please keep baby "K" in your prayers.

May the Lord God in heaven, hold all of us but especially children with special needs, in the palm of His mighty hand.  May healing and health flow from the shed blood of Jesus Christ upon these children.  May we all be shown the best course of action, for our lives, to reach out and be the hands and feet of Christ toward them all.

2 Corinthians 5:7   (For we walk by faith, not by sight:)




Monday, October 6, 2014

Life in General and Fall Plans

As I hung the calendar for October up, I have many thoughts running thru my head.  One being... where in the world has this year gone???  Really, I have been so busy, it is just flying by.  Every year, as I have aged, seems to go by faster and faster.  Since the toddlers arrived in February, I have just lost all track of time.  My life is joyful, hard at times and just swallowed up in child care and appointments.  I was filling out my home school attendance record for September and saw I only had one weekday, in the whole month, I did not have to be anywhere last month.  All of the other days, I had at least one or more appointments.  No wonder I have been so tired lately.  October has several empty days.  Here's hoping they stay that way!  

Tim has been home for a month now but Chick-Fil-A is done with their remodel.  He is there helping to put it all back together right now as I write.  Tim goes back to a "normal work schedule" tomorrow morning.  :(  Even though he was not home much in the month he was off, it was nice to have him sleep next to me till morning every day.  He always gets up and is gone by 3:00 a.m.  So having him here every morning has been really nice.  He is a workaholic and was gone to other stores, making a lot of phone calls  and busy doing paper work much of the month.  He did help me, by going to several appointments with me.  Having an extra set of hands and spending some time together was nice.  I don't like him to shave but Chick-fil-A has a strict dress code on facial hair, mustache only.  So for the whole month he did not shave.  We all loved it!  He also looks really good in a short goatee.

We will all miss Tim but it will be very nice to get back into our normal routine again.  When Tim was home, if he slept in, I allowed the kids to do so as well.  I did it so the house would be quiet for Tim.  I, as quietly as I could, got up with the baby and toddlers when they woke up and just let everyone else sleep.  When we do that, it throws the whole entire days schedule off.  It is harder to get in chores, Antonio's care, schooling and meals in a timely manor.  So even though we enjoyed Tim being here a bit more, it will be good to crack down and get our household in order.

The weather has been much cooler lately.  Absolutely gorgeous for being outside.  This means we will be taking several days off from schooling for fall clean up and getting the farm ready for winter.  A deep cleaning in the barn and all the stalls is in order.  We do it every year.  We already trimmed all the goats hooves, dewormed and bred them for spring milk.  We will be stocking up on hay and making sure every animal will be warm and dry for the winter months.  When Tim was home for the month, he did give me three mornings off by watching all the "littles", so the "middles and I could attack the gardens and yard that have been so neglected thru the summer.
Yes, I am totally embarrassed.  These are my raised beds.  I knew better than to plant anything this year because of the challenging needs and behaviors of the toddlers.  I knew they needed me every moment and then baby "K" came along and nothing much has gotten done outside at all.  We did have a few tomato plants a friend gave us.  We got tomatoes from them all summer. 
On the back of the raised beds I usually grow cucumbers or beans.  Carolyn and Zeke are unwinding all the morning glory vines that took over.
We took one full truck bed load down to the compost heap.  It is not totally cleaned up yet but we put a huge dent in it all. I won't even show you the rest of the gardening area!

I am also going to attempt a fall cleaning in the house on rainy days this fall or once the weather turns to cold to be outside.  I feel like doing a huge purging again of all we do not need or use, to try to simplify our lives a bit, in the area of clutter.

Now that the intense summer heat is all but gone, fall festivals and outdoor events abound in this area. We normally don't go anywhere on Sabbath.  We don't buy, sell, or trade if at all possible but their was a free Health Fair at our local Home Depo.  So we packed lunches and ventured out to enjoy the beautiful fall weather enjoying all the displays at the Health Fair.

The fire department was there with their trucks, giving out things and talking about fire safety.  We saw Uncle "B".  He works for the fire department!
So were the first responders and the ambulances.  The gas company with their trucks were there talking about safety.  The wrecker service was there, the forestry department talking about forest fires.  Insurance companies were there and Home Depo had free activities for the children.  There was so much to see and the children were allowed to climb in and on all the equipment.  "B" even sat on a police motorcycle and that made his day!

If you have followed my blog very long, many people know of Carolyn's deep seeded fear of clowns and people in costumes.   All of her life, since she was a baby, she has always shook and cried when a clown came around or a mascot of a company or team.  It has been an ongoing issue she just could not conquer.  Just last month, at Chucky Cheese for "B"'s birthday, Chucky Cheese came out to see the children and she literally dove under a table, nearly knocking everything off of it.
She will try to climb up me or anyone in the family if one comes near, tears just streaming down her face.  When we were at the Childrens Hospital, for baby "K"'s MRI a week ago, the hospital clowns came by.  They interacted with the rest of my children, doing their funny routine.  All of my children loved it but Carolyn.  She stayed glued to my side peeking around my arm.   One very kind woman clown, saw her and blew bubbles toward her from a distance.  I could see she was trying to help her over come this.  Before they left, she walked up to Carolyn, not looking at her and reached her hand toward Carolyn giving her a postcard with her picture on it.   It must have really helped Carolyn because on the day we went to the Health Fair, I told her that there are always these mascots walking around.  She said she was going to do well and give one a "high five." I have heard her say this before many times but to not dowse her enthusiasm, I said "Good I will take a picture and put it on the blog if you do!"  She was scared at first but but slowly walked up to the Chick-Fil-A cow and gave him a high five!  Tim had told her it would be there and who would be inside.  She did great.  Later on we were at the forestry tent looking at the bulldozers they put out fires with and Smokey the Bear came up and Carolyn let it hug her and then smiled big and agreed to have her pictrue take with him.  Her smile says it all.  I have never seen this smile before.  She was so pleased with herself!
At the end of the Health Fair they always do a emergency simulation.  They do it every year.  They have a wrecked car in the parking lot and some actors get in and they do a wreck scenario from start to finish.  They start with the sound of a wreck on the loud speakers over head and then the 911 call and the police and ambulance come and they all simulate what their jobs would be.
They use the jaws of life on the car and bring in the Life Force helicopter

It gives me an oppertunity to talk with the children about what to do in the case of an accident and see that the police, firemen and ambulance workers are not scary and just doing their jobs to help. 

It was a lovely outing and we all had a great time.  I love all the seasons we have here in the North Georgia Mountains.  Fall is very refreshing and welcomed after a hot summer.

Psalm 67:6  Then shall the earth yield her increase; and God, even our own God, shall bless us.