Saturday, September 16, 2017

Happy Anniversary Husband!!

I thank God daily for my husband.  Under God he is the greatest love of my life.  I have been blessed beyond measure by God, to have him be my leader, head and covering.  It is an honor to serve him in every way and in return, he is tender, patience and kind with me, even though I can really be a handful.  I know I don't write much about him.  I usually focus on our family, children and Gods hand on our life but today I want to share from my heart about Tim.  It is our 22nd wedding anniversary and as I reflect on those 22 years and the years before having him in my life and what they were like...all I can say is I am humbled to the core, to be married to him. 
Tim and I are opposites in so many ways.  He is steady, calm, quiet, low key, and the Fruit of the Spirit naturally flows from him without much effort.  I am rarely still, have to talk about everything to feel connected and ok with life, have to work at holding my tongue and thinking before I speak, hyper, and have to work at having the fruit of the spirit flow thru me.  He likes to pray about things completely and think things thru before doing anything...I am a pray about it but then jump in and do it and we will figure it out as we go along kind of person.  He has great patience with me, the children and life.  He works very long, hard, hours at work all day and is a hands on dad till bedtime. 
He treats me like I am a treasure to him and is in tune with me and how I am feeling and doing.  He jumps in to give assistance if he sees me needing help with the children or our home.  He notices when I need to get away and have a break and finds ways to provide that for me, often it being a surprise day out with just him for the day.  He notices if I am struggling, happy or sad.  He tries to alleviate stress, bring me joy, help me in what ever emotionally I am going thru and tries his best to support me in all I do.  He is incredibly positive about things, even to the point of frustrating me if I want to be grumpy about something.
He is the spiritual leader of our home.  He reads his Bible, prays and actively leads and teaches his family in the Lord.  He has bible study with the children every Sabbath. 
He tries to find at least one common interest to enjoy spending time with and doing with each child.

There is no other man on this earth I would rather be with.  I am beyond blessed and know it.  I am so very grateful.
Happy Anniversary my husband.  May God bless you in all you do.  May I be a good wife to you meeting your needs before you even know you need them met.  May I be that virtuous woman and helpmate to you in every area, every way.  You are loved and cherished by me and our whole family!

Ephesians 5:25-30

25 Husbands, love your wives, even as Christ also loved the church, and gave himself for it;
26 That he might sanctify and cleanse it with the washing of water by the word,
27 That he might present it to himself a glorious church, not having spot, or wrinkle, or any such thing; but that it should be holy and without blemish.
28 So ought men to love their wives as their own bodies. He that loveth his wife loveth himself.
29 For no man ever yet hated his own flesh; but nourisheth and cherisheth it, even as the Lord the church:
30 For we are members of his body, of his flesh, and of his bones.

Wednesday, September 6, 2017

Elizabeths Heart Cath

Today's post is a bit medical, so if you are sensitive to such things, you might want to skip it.  :)
Elizabeth and her life are a miracle on so many levels.  She was born with Truncus Arteriosis.  That basically means a three chamber heart, with one trunk of an artery coming off of the third chamber, that splits later .  She was and continues to be, our child that is the most medically fragile.   You can read about her story here.

We were told that if she was born several years earlier, there was no way to fix her heart. The surgery that was available at the time of her birth, could fix it but...she would need to have major heart surgery every four or five years for the rest of her life.  I mean..cool her body temp down... open her chest, break all her ribs, put her on a heart machine, stop her heart, fix it and put her all back together surgery.  Very serious and scary surgery for us all.  When she was born, they put in a wall to divide the bottom single chamber and used a cadaver artery, to make a conduit from the new chamber to the proper artery.  We all have valves to prevent back washing, she does not in that portion of her heart,  so her heart sounds like a washing machine and she fatigues easily.

The surgery was preformed the day she was born, to save her life.  It held till she was four and then she started having very high heart pressures and constricting of the non-living tissue, the conduit.  She was on oxygen and lasix daily as she was having congestive heart failure.  We took her in for a heart cath, to try to put in a stint to hold open the collapsing conduit.  It would buy her some time before needing to do major surgery to replace the whole thing.  When they went in to do it, her leg arteries had collapsed so they used groin arteries to gain access.  They could not get the stint into the conduit to place it.  We were so upset and sad and prayed hard.  They were going to do the surgery the next day.  That night a visiting Dr. from another country, came in to us and said that he would love our permission to try to place the stint.  He felt very confident that he could get it placed.  So we gave our consent.  The next day we had everyone we knew praying hard and praise God the stint was placed!  It bought her one more year before she needed the much dreaded major heart surgery. 

It was very hard to see our little girl go thru such a difficult surgery but glory to God she did amazing.  They only let one person at a time back into cardiac ICU and so Tim went back first.  He came out smiling and said everything was going to be fine.  He said he touched her little foot as it was the only thing not hooked up to anything and for the first time in years it was warm and had good color.  She felt so good after the surgery, it was hard to keep her still like they wanted us to, for the recovery peroid.  Also, glory to God, she no longer needed oxygen!

That surgery was supposed to last 3-5 years and praise be to God, she has not needed another since!  She is now 14.  We have to go to the cardiac doctor every six months for a EKG and Echo Cardiogram to check for enlarging and heart pressures and such.  Every six months the doctor would say all looked good and nothing had changed much and we could go another six months.  About four years ago, he warned us that anytime we could come in and things could have drastically changed and we would need to do something, as her last surgery was so long ago.  Praise God, we kept getting the go ahead to see him in six months, until last visit.  It was out of the blue and I was not prepared for it.  It took the Dr. forever to come in to talk to us after the EKG and Echo were completed.  A nurse came in and asked to take her back for a second Echo...  He finally came in and was not his happy jovial self.  He listened and felt pulses all over her body.  I finally could take it no longer and asked what he was thinking and he said that we would not know till she had a heart cath to check the pressures in her heart.  That things were not the same and he suspected she might need to have a stint placed, so a heart cath was scheduled.

Tim took her to Atlanta (to the children's hospital) the day of the heart cath and I stayed home with all the other children.  Elizabeth was nervous as she is older now and understands all that is going on.  I told her that I was staying home and she would be home tomorrow but if anything changed so that she needed surgery, I would find sitters and be there as soon as I could get there.

Tim called regularly and kept me updated.  They took her back and had trouble again getting up to her heart thru her leg arteries, so had to use two places on either side of her groin again.  Her heart pressure was not good, it was 90.  They came out and asked Tim's permission to place a newish kind of stint, that had a valve in it, so she would finally have a valve in that chamber.  They have had very good results with this stint/valve and they last about five years, so Tim said yes.  They were gone a while and came out and said they were having issues with the conduit collapsing, so they would need to place a stint first.  They placed a stint but then the next area collapsed.  Tim called and said they were going to place another stint.  Same thing again.  Over four hours later and much work later, they ended up placing three regular stints plus the extra one with the valve in it.  I finally got a call that it was done and she was in recovery.  With all the work they did her heart pressure was now 30!   Then a short while later I got a call that they could not stop the bleeding from the entry sites.  They have to give blood thinners during the procedure to keep down the risk of clotting and they also did way more work thru the arteries than they first thought they would. I texted everyone I could think of to pray and my in-laws offered to come stay with the children if I needed to go down.  Glory to God after a few hours I got a call all was well and it had finally stopped. 

I give God glory, honor and praise for holding Elizabeth in his mighty hand her whole life.  For having such tender loving care over her and helping all to go so well with this procedure.  That even though she needed a lot done, they were able to do it and she didnt have to have the whole major surgery done.  With all the work done, they say it should last her about five years.  I am just so overjoyed and grateful. 

Her recovery has been good physically.  She is feeling well and healing.  Behaviorally, she is having some of the hardest days we have seen.  She is always terrible after a surgery or procedure and it takes her a while to get herself back under control.  She gets very sassy, violent and says horrible things to us all.  I don't know if it is because of the pressure of knowing the severity of it all?  If the anesthesia does something to her chemically?..  Or maybe she knows my punishments will not be as hard because she is recovering?  Either way, I ask that you rejoice with us in her good recovery and God helping her so much physically...and that you be in prayer for us that her out of control behaviors will settle down and she will have some self control.

Romans 3:20-24

20 Therefore by the deeds of the law there shall no flesh be justified in his sight: for by the law is the knowledge of sin.
21 But now the righteousness of God without the law is manifested, being witnessed by the law and the prophets;
22 Even the righteousness of God which is by faith of Jesus Christ unto all and upon all them that believe: for there is no difference:
23 For all have sinned, and come short of the glory of God;
24 Being justified freely by his grace through the redemption that is in Christ Jesus:


God, as always, has shown us His mercy, grace, power and might, His plan and abounding love.  May He reviel these precious truths to you as well...as you live and grow in Him. 

Blessings,
susan

  

Saturday, August 19, 2017

Antonio Update

Many people have loved and prayed for Antonio over the years.  Out of all our children, he is the one that people constantly ask about.  Today, I am going to finally type out the update many of you have been asking for.  I have not written much about the details of his life because truthfully, it is hard for me to talk about and share.  Not that I don't want anyone to know, just that it breaks my heart and we are in the midst of it all right now.

Antonio was born a 23 week preemie and survived.  He has a lot of medical issues because of this miraculous beginning.  He was a foster child his whole life and God brought him to us and he became our son when he was six years old.  He has always been the sweetest and happiest soul.  When he came into our lives, even though he was a lot of care, he was such a blessing.  As he grew and matured though the years, he spent his time praying for others.  His heart is so kind and compassionate.  His body has slowly grown into a man but his mind is still the mind of a four year old.  I had never heard him say a cross or mean thing in his whole life the whole time he was growing up.  Even though he can not do very much at all physically, he is so helpful with the younger children and loves to watch them play and will call to me if they do anything they should not be doing.  We adore this young man.  I say all of this to paint a picture of our son we love and cherish so much.  To show what he was like, his true character, for most of his life...to compare to what his days are like now.
Antonio has Cerebral Palsy.  His is very spastic in all four limbs. The tone is so tight that he can not functionally use his limbs.  It is so tight, that as his body grew, the constant pulling of his tight muscles warped his bones as they grew.  It is so tight, that he has discomfort and pain in his joints and limbs.  When he was young, insurance paid for him to go to a physical therapist once a week to get worked on.  They would slowly uncurl his fingers and straighten his wrists with gentle constant pressure.  It takes a lot of hand strength to be able to do this.  They worked on his whole body gently stretching him.  He always felt better after a session.  Tim and I also pay for a pediatric massage therapist to come to our home once a week to massage his whole body and straighten out all his limbs as well.  Insurance will no longer pay for the physical therapy but we still pay out of pocket, for the therapeutic massage therapist to come once a week.  For many years, from the time he was very young, we took him to the neurologist twice a year to get Botox shots, into his tightest muscles.  To relax them and give him some relief from the constant discomfort, pain and spasms.  They usually only injected his wrists and major leg muscles.  The botox stayed in those muscles and the resulting relaxing of the muscles lasted several months.  It did not make it all go away but did give him a small amount of relief.  Enough to make it worth it.
When Antonio became an adult, we had to find a new neurologist.  The first time we went for his botox injections all went well.  On the second visit things went horribly wrong.  In the days following his injections, Antonio became totally paralyzed.  He could not even blink and could not swallow or protect his airway.  Praise God for his feeding tube.  His heart rate and breathing were very slow and he was non-responsive.   I took him back to the neurologist and he said he had given Antonio the maximum amount of botox for his weight.  No one had ever done that before and everyones body is very different.  So we don't know if for Antonio's body, it was an over dose?   If he got a bad batch of Botox?  OR what really happened but all we know it that it did not stay in the muscles in which it was put and went through out his whole body.  Antonio was like this for about three months and slowly regained his ability to swallow and such BUT... it did something else to him.  Some how this toxin has done damage to or caused an imbalance in the chemistry of his mind.  For the next year he would be a little better and almost himself for a few weeks and then for a month or so have a total personality change.  He would sleep a lot day and night.  Have dementia, be combative, bite himself, suffer from depression and say the most horrible things.  He will yell out, scream, cry out and say horrible things all day long...It breaks our heart.  If we try to talk to him or redirect him when he is going though these spells it makes them MUCH worse.  These cycles are horrible.  When he is going thru a bad spell he is much harder to care for as he fights us and we don't want to get hurt, him get hurt or us drop him.  When he is going thru a good spell, he smiles and prays and is back to being the sweetest soul.  This has went on for over two years now.  We have tried everything I know to try and prayed and prayed.  I research often about what we can do or try.
Antonio was going though a very hard spell during our vacation.  It was a struggle for him to smile and I have only a few pictures of him smiling after taking dozens of pictures with him trying.  You can tell in the above one he is tired and distressed but trying to smile for me.
Recently, someone mentioned amino acid therapy.  We tried one and praise God so far it seems to be helping.  It is God and a miracle the difference it has made but he is still having bad spells.  They are just shorter and not as bad.  When we first tried it he had the best and longest good spell yet.  I can honestly say he was back to how he was before the Botox tragedy.  That wonderful three week spell was followed by five horrible days but he was not as bad as the spells of the past two years.  It was the shortest bad spell he has ever went though as well.  Usually, it lasts for at least a month or more.  He is now on day two of a good spell.

I am grateful for our son.  He is such a fine young man.  It has been very hard, as his mother, to see him suffer so and go through this.  It has been hard on all of us, not just to see him going thru it but because his daily care is so  much harder when he is not in his right mind.  Antonio can do nothing for himself.  We have to lift him, shower him, clean and wipe him, diaper him, feed him, tube feed him... and all that is so much harder when he is trying to punch us, spit food at us and saying mean things.  We know it is not him.  We know this is mental instability as we know this young man and his heart.  He knows too.  He is so loving and apologetic when he is in his right mind and going thru a good spell.  We give God all the glory, honor and praise for all the healing and progress Antonio has made.  We are still looking for answers and new things to try to help Antonio.  We are still praying fervently for his total healing, both physically and mentally and that our sweet, sweet, young man will feel and be well, in all areas of his mind and body.

2 Timothy 1:7  For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.


I pray everyone is having a great transition from summer to fall.  May God pour out His peace, strength, healing and direction into your life as you live and grow in Him.

Blessings,
susan   

   

Saturday, July 29, 2017

A Real Vacation!

We have had the best summer in years.  There were no major surgeries and not many doctors appointments.  We have spent most of the summer resting, playing, swimming and doing inexpensive or free outings with the children.   It has been most rejuvenating and relaxing!

The most exciting part of summer this year is that...Praise God!!!..we were able to go on our first real vacation in five years!  We saved our money carefully over the last many months and had a few kind and generous donations from people.  May God bless them 100 fold!

I can not tell you how much planning and preparing it takes to go anywhere, with our crew, especially on vacation.  We have so much that we need to bring for each child and their special needs.  We also travel with several companion/therapy dogs, so we have to bring everything they need as well. 

Then there is making sure we have people all lined up to come to the farm and take care of our many animals.  It took three people, coming daily, to care for all our animals, from doing the milking to feeding the fish.  My most heartfelt thank yous to my dad, who stood patiently out in the field feeding a very old, slow eating pony, twice a day.   To my neighbor, who came and bottle fed two baby goats every evening.  To our dear friend "J", who came and spent two hours a day here, doing everything from milking,, to picking vegetables to gathering eggs, to misting lizards!  Each person refused any payment at all, though I persisted and insisted.  May God bless them abundantly for their kindness and donations of their efforts and time.  I am so grateful that everything came together so smoothly and all went so well.  All the glory to God!  Amen!

We packed up, loaded the bus and headed on our way to Jekyll Island.  Even though we drive a bus as our normal daily vehicle and you would think we had a lot of room, it was packed to the gills.  We made great time and got to our destination in about six and a half hours.  We rented a house for a week so we could have a kitchen and plenty of room for all.   It was also the most economical way for us.  It was all one level, great for Antonio and his wheel chair.  It allowed dogs and had a very nice yard.  William took his dog for long walks around the neighborhood almost every day.
 
The older children had been to the beach before.  I loved hearing them plan and prepare for their trip.
They had the greatest time.

The younger children were so much fun to watch because they had never been to the beach, seeing the wonder and fun they had, as they jumped in the waves, sunk in the sand and played was just precious.

We spent every morning but one on the beach till lunch time.  Some of my children burn very easily, so I tried to not have them out in the hottest part of the day.

In the afternoons, Tim watched the littles while they rested and I would take the older children down to the beach to spend time doing whatever they wanted, without having to help keep an eye on little ones.
We brought Antonio's old stroller with us for use on the beach.  We learned from past vacations not to take his good wheel chair on the beach, as the salt water rust its parts very quickly.

Tim and I would take walks on the beach alone in the evenings, once the little ones were in bed.  The older children would play games and watch movies, in the evenings and hold the fort for us.  :)




We did a few fun things while in the area.  We took the children to the local water park one day.
There was a huge bucket of water that would fill and dump every few minutes in the baby park area.  It was a great hit for our crew.
Tim and I stayed in the baby park with Antonio and the littles and the older children stayed together, as a group and went on all the water slides all over the park.  They would check in with us every once in a while.  We took the little ones home at lunch and left the older kids there for the rest of the day.

Antonio was in the midst of one of his bad spells while we were on vacation.  Weeks of emotional and physiological issues.  I was however able to capture a few pictures of him with a smile.  I took about 30 pictures to finally get a smile like this.
Antonio loves reptiles so we took him and the whole family to the turtle sanctuary.  They do surgery on and rehab injured and sick sea turtles there.  He was showing off his shirt he got there in the above picture.

We went to a playground on a nearby island several times while on vacation.
Some of the older children climbed to the top of the light house nearby.

It was a fun and relaxing vacation that we will never forget!  Thank you God and all that help to make this possible!

James 1:17  Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

Blessings!
susan





Saturday, July 22, 2017

A Big Happy Birthday To My Oldest!

Recently my oldest child had a birthday...  30 is such a big number. 

To tell you the truth, I don't know where 30 years went.  I remember vividly the day he was born.  I had always wanted to be a mother my whole life.  His birth blessed me and gave me that title.

He was such an active go getter from his birth. 
He did everything super early. 
He became a little man at a very young age.

I know you have met children like this...full of knowledge, always asking questions, full of boundless energy and ALWAYS talking and did I say...asking questions?!!  Good questions.  The kind parents love to explain and answer.
We had really good, educative conversations, starting from a very young age. 
He was so easy to home school, as he devoured knowledge and loved to read and figure things out.

I miss him.  I miss him as a baby, toddler, little boy, child, teenager and young man. 

I  miss him... now that he has moved away (as he should) and has his own busy life, with his own home, job and girlfriend.  I miss having him around more but....I could not be more pleased. 

He has turned out to be a very nice man.  Not that we never had a hard spell as he grew up.  He was a challenge to raise, he was so opinionated and independent.  Not that we never had spats or struggles against each other, he was not perfect...I was not perfect... but I am pleased that he grew and learned through it all. I poured so much of myself into him.

Stephen, I love you boundlessly and ferociously.  I pray for you fervently and always.  You are so precious to me and are one of the greatest treasures of my life.  May God make Himself very real to you and have His mighty hand on your life now and always.  God be with you.

Acts 16:31  And they said, Believe on the Lord Jesus Christ, and thou shalt be saved, and thy house.



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

Saturday, July 15, 2017

Happy Birthday William!

William and his companion dog, Dixie
William had a birthday recently!  He turned 21 years old!  I am so blessed to have this young man as my son.  He is always respectful and happy to help me.  He is my right hand man and such a hard worker around here.  I am so grateful that he is in my life. 

He really loves VW bugs and wanted a Volkswagen cake this year.  He has slowly been fixing up his car over the last few years, as he can afford it.  You can read about it here.  :)
My sister did an amazing job on his cake.  He was so happy with it.  Thank you Aunt "S" for always doing such an amazing job, making such wonderful cakes for the children.

William is grown up.  That is the reality of it all.  I can't believe it but the years of his youth have flown by and he is now an adult.

I remember back to his struggles as a baby/toddler,

his diagnosis of autism as a young child
and think about the things I was told by professionals he would and would not be able to do.  I am amazed by the grace of God and all He has helped William with and through, in his life.
His bug he bought with his own money as a little boy.
His bug in a local car show.
We are so blessed and I feel like I have seen a miracle in Williams life, his whole life.  God is so good. 

William is doing wonderful.  He has struggled for years with his health.  At around age 16 he started having health issues that were quite debilitating at times.  Lots of exhaustion, heart palpitations and pain, extreme muscle pain when exerted and issues with hypoglycemia.  We took him to many specialist trying to figure out what was causing him such issues.  He went to an endocrinologist, heart doctor, geneticist and his, general practitioner quite a bit.  They really could not find much, other than fatigued adrenals.   Which is a concern as his dad has Addisons disease.  It was also suggested that he might have a mitochondrial disorder.  One of the doctors said that what William is experiencing looked like it is an auto-immune issue.   So exactly a year ago, when he was particularly sick, I asked him if I could take over his diet, as I am very familiar with auto-immune issues and diet.  He agreed.  I prayed about it all and helped him create a simple anti-inflammatory diet.  It has been exactly a year since he started following this diet and praise God he has lost 70 pounds and is feeling so much better.  He has more energy, can think clearer and has fewer energy crashes.  All the glory to God!

William has finished his GED and is going to attend our local college.  He will be taking some remedial classes and then one class at a time till he gets the education he desires.  He will be attending, with concessions, under the Disability Act.  He loves doing stop animation but will be attending to receive an education in computers for now.  If you wish to see his animation, please visit his Youtube channel at Lego bro 4 studios.

William is such a precious gift to us from God.  We give God the glory, honor and praise for the man William has become and all things good in his life.  Thank you God for William!

We love you so much William.  You are a wonderful son, a great brother and a kind soul.  We appreciate all you do for us and your generous and helpful actions and ways.  May God have His mighty hand on your life always.  May He lead, guide you and may He bless you 100 fold for your obedience as a son.

Ephesians 6:1-3  Children, obey your parents in the Lord: for this is right.  Honour thy father and mother; which is the first commandment with promise;  That it may be well with thee, and thou mayest live long on the earth.



Love, Dad, mom, Stephen, Antonio, Carolyn, Zeke, Elizabeth, Billy, Timothy, Kinsley and Anna-Kate!