Happy Birthday Sweet Girl!!!

In my last blog post I shared how all four of our girls have their birthdays within three weeks time!  Elizabeth's birthday was first and then Carolyn's.  The next one that took place was Kinsley's.  I have not done a post on just Kinsley in a very long time.

Kinsley just turned four years old!  I can't believe that four years have flown by since God blessed us with this child, to raise for Him.

When she came to our home she could not see, could not purposefully move any part of her body or co-ordinate the two halves of her body.  She had the lowest muscle tone of any child I have ever had in our home.  So low, that her joints luxed in and out of position while dressing and bathing, as the muscles help hold everything in place and the tone was just not strong enough.  As the doctors appointments piled up, so did the diagnosis.  She is considered medically fragile and special needs.  Hypoplasia of the corpus callosum (missing part of the brain that bridges the two halves) with this diagnosis comes a slew of endocrine issues to be treated and monitored for and issues using the two halves of her body together as the bridge that sends messages between the two halves of the brain is not all there.  Optic nerve Hypoplasia (missing some of her optic nerves in both eyes)  Hypotonic Cerebral Palsy. (low muscle tone)  We prayed over her, loved her and worked hard with her and God began His work.

Slowly she started to respond to light and dark.

Then movement that was back lighted.  Then tracking objects.  Then smiling in return of a smile.

Then purposely using her vision.  Her vision is not normal but she does see, Glory to God!  She has tunnel vision and if not looking exactly straight forward has double vision.  She has no peripheral vision but can see praise God!.

When she came she could not even lift her arms.  Holding her was like holding a bag of rice.  Very cuddly but no muscles.  We were told to go ahead and put another wheel chair tie down in our bus as she would never be able to walk.  We had to pattern her, over and over, how to roll over.  Trying to teach different parts of her brain to make the connections for communication because of the missing parts of the corpus callosum.  We prayed and patterned her body movements for every milestone she needed to make.  Over and over we prayed, worked and practiced and over and over she hit those milestones little by little!

Because of her low muscle tone she also had swallowing issues but over came them as well.  She still aspirates on liquids if drinking from a cup by tipping her head back...But protects her airway well if tucking her head down and using a straw to self regulate the amount of fluid she takes in and swallows.  She can also manage using a sippy cup with a control valve just fine.  The miracles just slowly blossomed as she grew and today...even though those diagnosis are still there, you would hardly see or notice unless spending time with her.  God has really done a huge work in her body and life.  All the glory to Him!

Kinsley has always been such a blessing to our home.  All of the children are...but some of our children are just hard.   Every day hard.  Hard behaviors, hard to take care of, hard to home school, big time hard.  God gives me grace and sprinkles in a few very laid back, compliant easier children in the mix of our home.

Kinsley is one of those children.  I can count on her to be reliable in behavior and temperament.

She is so cuddly and loving.  Always a kind word for people and hug.

She is super smart and mature, a sweet and gentle soul.

I can trust her to have full run of the house without getting into things or damaging anything.

Many of our children can not have that privilege.  She is so helpful and loves to organize and be with me doing what I am doing.

She is creative and loves books, dance, art and pretending.  She is also a bit opinionated and tries to keep everyone and thing in order or what she feels is order.

So that is something we have to work on. Helping her be flexible in all things in life.

She wanted a certain dog cartoon character on her cake and my sister once again did a wonderful job blessing Kinsley with a perfect cake!  Thanks sister!

One of Gods greatest gifts to me is the children He has blessed us with!  Kinsley is a treasure to our home, little Miss Sunshine! We need all the sunshine we can get!  :)

Kinsley, Happy Birthday sweet girl.  May God do a mighty work in your life!  May you always serve and live for Him, all the days of your life.

Proverbs 20:7 The just man walketh in his integrity: his children are blessed after him.

Love,

Dad, mom, Stephen, Antonio, William, Carolyn, Zeke, Elizabeth, Billy, Timothy and Anna-Kate

More Birthdays and Happenings!

At the time of the writing of my last post, Elizabeth and Carolyn had just celebrated their birthdays.   We have since had two more birthdays take place.  Kinsley celebrated her third birthday. 

She wanted blue and red flowers for her birthday from daddy.  He had to special order them.  :)

She wanted a character from her favorite show on her cake and my very talented sister made it for her.  Thank you Aunt "S".  Kinsley was so happy with it. 

I can not believe she is three already.  God has done a huge work in this child. She has come so far!

You are a huge blessing to our home Big Girl!  May God have His mighty hand on you all the days of your life and may you dwell in the house of the Lord forever!

Anna-Kate turned 2 on her birthday this year. 

She came to us when she was less than 48 hours old.  What a change in those two years.  She had so many issues when she came to us and is now thriving and developing well.  God does His thing in these children's lives and I just sit back in awe as I watch.

She is a huge fan of the purple dinosaur.  I personally, am about burnt out after 20 years of the "I love you" song but it brings her so much joy. My sister did a beautiful job on Anna-Kate's cake and she absolutely loved it! 

Thank you Aunt "S"  and family, for all you do to make our children's lives special.

We love you our littlest Princess!  May you be held in Gods mighty hand all the days of your life!

Zeke recently participated in the local Special Olympics.  This was his second year taking part and he really enjoys doing it.

He had quite a cheering section.

He placed second in the shock put, second in the 100 yard dash and his relay team placed first in the relay race for his school against the other schools relay teams.

Congratulations Zeke!  We love you so very much!

William had his graduation ceremony from the GED program! 

So much hard work and determination went into it for him.  He wore a gold cord for being inducted into the National Adult Education Honor Society. 

Tim's parents and brother came to the ceremony.  Carolyn was not there.  She had a ballet class and is only a few classes from recital so could not miss it. 

What an accomplishment and milestone. 

We could not be happier for him or more pleased.

While everyone was dressed up for the occasion I took a few pictures.  The boys are growing up so much! 

  Pure sweetness.  They are all very close and play very well together...most of the time!

It is very hard to get Kinsley to smile for the camera with a real smile.  She is pretty shy.

Elizabeth is changing so much lately in so many ways.  Quite the young lady lately.

We also took Antonio to Repticon.  The reptile show that comes to our area once a year.  He loves reptiles.  He was saving his money for a tortoise but once there decided to get two more crested geckos.

I am looking forward to summer.  It has been a very busy spring and our calendar is still full.  We are going to try to take it slow and easy this summer.  We have been diligently tightening our belts and saving our money.  We are going to try to take a vacation this year.  We have only had two vacations in the last 14 years.  We went to Jekyll Island in 2011 and 2012 and have not have a vacation since.  I would love for our four youngest to see the ocean and play on a beach as they have never been.  Also, our older children work so hard around here helping with the farm and younger children.  A vacation would be so good for them and us all.  God is so good.

Hosea 6:3  Then shall we know, if we follow on to know the Lord: his going forth is prepared as the morning; and he shall come unto us as the rain, as the latter and former rain unto the earth.

May the Lord God in heaven be with you.  May He give you wisdom in making decisions for your life.  May He give you peace and joy in Him as you live and grow in the Word of God.

Blessings,

susan 

The End Of Summer

A beautiful rainbow over a farm close to us.

We have had a great summer.  It was much less busy than normal because of Elizabeth's back surgery.  I wanted to keep things low key and us at home as much as possible, so I cleared the schedule as much as I could.  It was wonderful.  I was glad I did, as I kept up with the extra produce, from the garden, so much easier this year.  We had many melons, cucumbers, green beans, peppers, black berries, pears, cherries and a over abundance of squash and tomatoes.  I made lots of squash soup and pickled squash.  I also made lots of tomato soup, home made ketchup and chili sauce.  Everything is pretty much done now except we are still getting a lot of tomatoes and the grapes are about to be ready.  We also have one Asian pear tree that is not quite ripe yet.  The figs are ripe right now and I have made one batch of fig preserves and made some oatmeal fig bars for the children as well.

I can tell fall is in the air.  The nights are getting cooler than they were and when I get up early in the morning, to go out to milk the goats, the air smells and feels like fall.  I am preparing to breed two goats, to kid this winter for milk. 

Stephen just bought his first home!  It is a beautiful condo just minutes from his place of employment.  It is also walking distance from an urgent care and some stores.  It has very nice amenities, like a pool and is a gated community.  It seems like a nice neighborhood. I am so happy for him.

Antonio has had a few issues this summer.  He started hallucinating about six weeks ago.  He would talk to people who were not there and think he was somewhere he was not.  I was thinking maybe it was the progression of his condition, as nothing else had changed.  I took him to the doctors and they said a bladder infection could cause these symptoms.  So we tested and much to my surprise, he did have one.  He stopped hallucinating three days into the treatment but started again about two days after the medication was completed.  So I took him back to the doctors and we got a stronger antibiotic for him.  He has only been on it a day.  I pray it helps.  He also still keeps having relapses from the botox reaction that he had last July.  He does good for three or four weeks and then has a relapse where he doesn't smile or talk and has trouble moving again for a week or so.

Over all, he is doing well with no major issues going on.  Just my sweet, young man, son.  :)

William has completed three parts to his GED.  He has been going to our local college and working one on one with a tutor, for over a year now, under the disabilities ACT.  He has prepared for, taken and passed three sections of the GED and is now almost ready to take the last portion.  The hardest for him...math.  Once he passes this last section, he will have his GED!  We have been talking a lot about what direction to go from here, as far as his education is concerned.  He would really like to get a job and be self-sefficent some day.

It has been difficult, with his autism and learning disabilities to do any main stream learning for him.  Also, his health has not been the most stable since he was 16.  Tim and I have taken him to many specialist, over the last many years and so far, the professionals pretty much agree,  that his symptoms are from some sort of auto immune disease.  We have been praying fervently for years for his healing and for answers about his health.  All auto immune disease is inflammation related and diet/sensitivities to foods and lack of certain dietary nutrients, vitamins and minerals are usually the cause of debilitating symptoms.  About a month ago I told him I was taking over his diet.  He was not happy but very complaint as he always is for me. He has been eating pure food 95 percent of the time for the last month and has lost 15 pounds.  We were not doing this for weight loss but he did need to lose some.  He also has had only a few head aches which used to be an almost daily ailment.  He also is not having the debilitating crashes of energy and terrible fatigue that he was having.  He has had a few "crashes" but they have been mild and have not taken him days to recover from.  He is eating a whole food diet and taking many supplements.  It has been good to see him feeling better every day.  God is so good.

Carolyn has been such a big help this summer, as she always is.  We have spent a lot of time together taking care of the small children and cooking down produce in the kitchen.

She has been saving her money and bought a baby guinea pig a week ago.  It was 21 days old when she got it.  To cute.  She named it Edward.

Zeke had a relaxing, fun, summer and is back to school.

He is in the high school program for autistic children this year and is having a really good time.  He has PE every day which he loves.  He will be going into two main stream classes, with a para pro and the rest of his education will be in his closed classroom.  He will be learning life skills, taking educational outings into the community and doing job training at different local places of business, in rotation this year.  That is the biggest reason why we put him in public school last  year.  So that he would be in this job program this year.  If he stays in this program through out his high school career, they will be doing job training for these four years and help him get a job when he graduates.  I could never give him this kind of opportunity schooling him at home.

Elizabeth is doing well from her surgery.  It was a very necessary surgery and hard to go though but well worth it.  She is so much straighter and taller.

These pictures were taken at therapy to compare to the before surgery photos.

She has a lot more confidence since the surgery. She was becoming very self conscience about how her back looked.

The biggest plus, is that she is no longer having the shortness of breath, heart palpitations and blue/dizzy spells she was having before the surgery.  So these symptoms were positional, from the weight of her crooked spine, pressing on her enlarged heart and lungs.  She is feeling well.  She is in PT to work on stretching some very tight areas, that were crooked for so many years and to get strong again.  She is still a bit unsteady when she walks or turns but is doing better all the time.  She is also back to ballet and just doing what she can tolerate right now.  That in itself is wonderful therapy and very motivating and strengthening.  I never knew how much strength it took to do ballet, till my girls were in it.  It takes a lot of core strength and very strong muscles.

I took the girls to the Gem and Mineral show, that is in a town close by, once a year.  Elizabeth used some of her own money and picked out a ring setting and a gem and they built her a ring.

It turned out very pretty.

Billy is in gymnastics and dance this year.

He is really enjoying it.

I love this picture.  He sat down to have his picture taken with the dance studio mascot and when she leaned in to have her picture taken with him, her ear fell over his head.  He got an ear in the face.  :) His expression is so funny.

He falls asleep as soon as we get home every night he goes.

He made a necklace at dance camp.

That is so good for him!  As he is my over active little guy.  I am also doing some light home schooling with him right now.  He is so smart and is just loving it.

Timmy and Kinsley are taking tumbling class for two and three year olds.

They are having a ball together in there.

It is so good for them both.  At the end of class, they do a little pom pom routine that the kids love.

Especially Timmy, with his autism.

Timothy would just shake those sparkly poms in the air in front of his eyes self stemming for hours, if they would let him!

Oh the joy a sparkly bunch of plastic strings bring!

Kinsley has hypoplasia of the corpus callosum.  With that diagnosis, comes a whole lot of medical conditions, that she will need to be closely monitored for, for the rest of her life, as at anytime several body systems could fail.  She has to have blood work done every six months.  The last testing showed she was in adrenal failure.  So she had to go and have a cortisole test done "in patient" at the children's hospital.

She did not like it that they wrapped her hand in a diaper to cover her IV port.

The test came back that she is not in total failure but needs to be watched closely in that area.  So the doctors will be keeping a closer eye on her cortisole levels at each testing now.  We are very familiar with this condition, as Tim has Addisons disease.

She is loving the tumbling class and pom poms.  At this place, they do not have a dance class for her age group.  She really wants to dance.

She stands at the two way mirror and watches Billy in his dance class and copies all the movements he is making. :)  Maybe next year I will find a dance class for her.

Many people have asked about our youngest.  There will be a post coming soon.  :)

We are very excited and rejuvenated going into fall this year.  I am ready to start fall cleaning and sorting things down.  Home schooling has begun and we are slowly getting back into a good routine.  Even with the harsh world events going on all around us, God is so faithful and good to us, always.

May God be with you now and always.  May He direct you in the way He wishes for your lives, as you live and grow in Him.

Psalms 2:11-12  Serve the Lord with fear, and rejoice with trembling.  Kiss the Son, lest he be angry, and ye perish from the way, when his wrath is kindled but a little. Blessed are all they that put their trust in him.

Blessings,

susan