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

Birthdays Galore!

April and May are pretty intense for birthdays around here.  The four girls in our home all have their birthdays within three weeks of each other!  Lots of pink and cake for days on end!  Lots of excitement, squealing and giggling, as girls are so much more emotional than boys about things, you know.

The first girl to start the birthday parade was Elizabeth.  She turned 15 years old this year.  Her whole miracle life has been amazing to me.  She has been one of the hardest children I have ever had in our home.  Raising her has been a challenge at every turn, almost daily.  Over the last few years, she has slowly been improving.  Giving me hope that she will be able to live on her own one day, have a normal life with normal relationships.  I must say, that over the last six weeks, she has made a very positive and amazing transformation.  The biggest change I have seen in her yet.  We have been talking together, about her adult future and goals.  I shared with her what I was doing at her age and where she is and why there is such a huge difference.  We have talked about, that no one can totally change without God helping them daily.  She is really trying.  She is really putting forth effort now.  All of these years, she has been set on rebellion at all things placed before her, just to defy.  Just to prove that no one can make her do anything in life...from schooling to chores.  She would behave to get what she wanted or to get to go somewhere and then act up as soon as she got what she wanted.  Raw... I know..but the honest truth.  I am amazed at her new found restraint in her temper.  No tantrums in weeks.  Very little slamming things and throwing things...a reminder or talk can defuse things.  Wow...  She is praying and listening to our devotions much more intently and participating in asking questions and taking in the answers.  She is working hard at her schoolwork with out being monitored or asked.  Sometimes six days a week.  She is being much more respectful not just to authority but to her siblings.

Holding her very sick sister at the doctors office.

I am beyond grateful that God is touching her heart.   I am grateful for this season in parenting her.  For this very normal and calm place she is at.  I pray she stays here.  I pray we never look back.   I am so please with her progress and commitment these last many weeks.  I am amazed.  I have always loved her fiercely (as I do all our children)  or would have given up many years ago.  It is worth it to hang in there and wait on God and the miracles he brings about.  Not just in those we are praying for but what it teaches us!  I have learned so much about God and parenting, in having Elizabeth be our daughter.  I would have it no other way!  She is a blessing to me and our home and God has great plans for her life!

Elizabeth and Carolyn used to play with dolls a lot as children.  With the new trend in reborn dolls sweeping the nation, in young children, teens and adults, collecting them...my girls have started to collect life like dolls.  Many grown women have whole nurseries set up with clothing for them and take them out in public!  Anyways, to me, it is good role playing for my young ladies, to help them be  good moms someday and better people.   Elizabeth wanted a doll from Paradise Gallery for her birthday this year.  So we got her that and a Joovy car seat.  She was beyond happy.

She wanted a home made cheese cake from her Aunt for her cake!  YUM!  Thank you Aunt "S"!

 Happy Birthday Elizabeth!  I am so impressed with your determination lately and goals you have set.  I am so excited to see how God uses you for His glory!  May the Lord God in heaven keep you healthy and safe.  May He lead and guide you all the days of your life as you live and grow in Him!

For about 10 days in the year, my middles are all a year numerically apart.  This year it was Elizabeth 15 at her recent birthday, Zeke 16 and Carolyn 17 but...then my dear sweet daughter Carolyn has a birthday and this year she turned 18!!!  I know. I can't believe it either!  I remember the day she was placed in my arms for the first time.  I remember her adoption day.  Time has just flown by.

Carolyn has grown into a wonderful godly woman.  She works beside me all day long, learning life skills and helping me in all I do.  She is a tender loving soul.  Even though on paper she has graduated, she enjoys homeschooling and learning, so does independent work just because she wants to every evening, in her free time.  She got her own room recently and loves the quiet away from siblings.  She still takes ballet, is on point and rides her pony several times a month.

This is Carolyn with one of her very old dolls Daisy.

She wanted a Paradise Gallery doll like her sister as well.  So we ordered that for her. It will be coming very soon!

She asked her aunt to make her a chocolate cake with Joy on it, from one of the kids  movies she has seen.  She loved it!  Thank you again aunt "S" for blessing the children with your talent.     

Carolyn is such a blessing to our home and friend to me.  I love her dearly and don't know what I would do with out her.  Such a sweet and lovely soul.

May the Lord God above hold you in the palm of His mighty hand all the days of your life.  May He help you be all you can be as you live and grow in Him!!

Glory to God!  The miracles I have had the privilege to witness in my life, in these children, has been nothing short of amazing!


 
1 Chronicles 16:24 Tell of His glory among the nations, His wonderful deeds among all the peoples.

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

Another year older!

Antonio had a birthday at the end of the year last year, in December.  It is hard to believe he is now 23 years old.  We are grateful for every year!  Praise the Lord, he had a good birthday and was in his right mind for the day and celebration.  He wanted to go to a local "all you can eat" Chinese restaurant, for his special meal.  He has a feeding tube for all his liquid needs, as he aspirates on any fluid taken by mouth.  He does like to eat but often tires after a few bites or just can't eat because of his health or state of mind, so at those times, we blend the food he wants to eat and put it in through his feeding tube.  Lately, he is into eating cream cheese wantons for some reason.  So a Chinese restaurant was his choice.  He also wanted cheese cake, like Zeke had on his recent birthday.  My sister did a wonderful job once again and made a delicious cake for him.  Thank you Aunt "S"!

Antonio is still cycling through good and hard spells... you can read about them and how they came about here.  He will be in his right mind and happy and sweet for several weeks and then totally opposite for a few weeks.  It is very hard on the whole family when he is not in his right mind.  For the few weeks surrounding thanksgiving, he was going through a hard spell and could not even come out and be around people or enjoy the meal he had looked so forward to, just a few weeks earlier.  He says horrible things and tries to hurt anyone who comes in arms length of him when going through a bad spell.  It makes me so sad to see him like this, as I know this is not who he is.  God is so faithful and helps us through it all.   We all become very happy in our home, as we see Antonio emerging out of this phase and becoming himself once again.

When he is himself, he is the sweetest, best, son and brother to all the children.  Loving and tender.  Here I caught him playing with Kinsley on his I-pad.  So very tender.

We love you dearly and always Antonio!  May God grant you health and pour out His healing power upon your body and mind.  You are an inspiration to all and are a wonderful son.  Happy Birthday!

Isaiah 60:1-2  "Arise, shine; for your light has come, And the glory of the LORD has risen upon you. "For behold, darkness will cover the earth And deep darkness the peoples; But the LORD will rise upon you And His glory will appear upon you.

Love, Dad, mom, Stephen, William, Carolyn, Zeke, Elizabeth, Billy, Timmy, Kinsley and Anna-Kate

16 Years!

I am so behind on blogging.  "Busy" has hit our home once again and I am doing my best to get everything back under control and into some type of routine.  Hopefully, by February, we should have fewer appointments and calmer days again.

In November 2017,  Zeke had his 16th birthday!  Happy Birthday Zeke!! 

Zeke came into our home when he was 8 days old.  I cut the hospital band off his little leg myself.  God brought Zeke into our home in one of the most miraculous ways.  In a way that I knew, beyond a shadow of doubt, that Zeke was to come into our home and be our son.  Through a dream (read about it here) given to me by God.  He has blessed my life and heart every day of his life.  I am amazed at how quickly 16 years have went by.  He is growing into such a nice young man.  He is quiet and kind.  He is helpful and always does his best at anything we ask him to do.  How I love this young man.

Zeke is still attending public school.  He loves going and his teacher is absolutely wonderful.  He is very close to the two para pro's in his classroom and thinks the world of them.  He spends some time doing work in his classroom.  He goes to two main stream classes...video production class and social studies.  He is doing very well in the work program at his school.  His first year in the program he worked at our local farm store.  At the beginning of this school year he worked at a local steak house.  This second half of the school year he will be working with his dad.  He is looking forward to that. 

This boy loves to eat!  He now can handle all foods without reactions and is enjoying the broader pallet!

Zeke spends his time, at home, making movies.  He has his own little 10 by ten area, that we set up for him on the enclosed front porch area, of our home.  He has a computer for making his movies after he films them.  He has all his legos and wooden railway train things for filming as well and many tables for making scenes on.   He tries to have a new movie for Tim and I to watch every Friday for movie night.

Zeke is a good brother to all his siblings.  He often stops to tickle and tease his younger siblings.  He gets along well with Billy and they play legos together.  He also helps us load and unload Antonio onto the bus or helps with transfers when we have to lift Antonio.  Zeke will have to live with us always and none of us have any complaints or concerns about that. 

Zeke loves animals.  He still has his little therapy/companion dog, Roo.  She is getting very old.  He has had her since she was six weeks old.  He also has two little Guinea pigs and a very old pony from his childhood , Dixie.  She can not be ridden and he tenderly grooms and cares for her daily.

I love Zeke dearly.  He is such a sweet, gentle soul and brings us many blessings by just being here with us...Just like God told me in that dream about him, those many years ago.

Zeke wanted a cheese cake for his birthday.  So my sister made him a delicious home made cheese cake.  He was so happy.  Thank you aunt "S"!  Aunt "S" and Uncle "B" also took Zeke and William to the Lego store for Zeke's birthday!  Very happy young men! 

Happy 16th birthday Zeke!  You are a truly wonderful son and blessing to our home.  You love the Lord and always try your hardest at all you do.  You inspire me.  May God have His mighty hand on your life now and always.  May you always serve and love Him!

Psalm 90:16  Let Your work appear to Your servants And Your majesty to their children.

Love, Dad, mom, Stephen, Antonio, William, Carolyn, Elizabeth, Billy, Timmy, Kinsley and Anna-Kate.

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

  

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   

   

Elizabeth's Spinal Surgery

Thank you so much to all who have prayed and asked about Elizabeth.

Tim took her down to Atlanta very early this morning to be prepped for her surgery.  They left at three in the morning.  Her surgery was to take between two and three hours and was done in an hour and a half!  Praise God.  All went better than great and the surgeon was very pleased with the results. Thank you faithful God for all you do for us, always.

Elizabeth has slept for most of the day and they are managing her pain well for her.  Tim is staying with her till her release.  Stephen took me down to Atlanta so I could be there while she was in recovery and to get her settled into her room.  I will be home with the other children, until Elizabeth is released to come home, in a few days. 

She is doing well. She is still on oxygen but they will start weaning that very soon.  She has lung disease so it takes a little time for her to get back to base line in that area.

She was ready to get this done and over with.  Now she is on the other side of it and we pray she heals quickly with as little pain as possible.  She wants to be fully recovered by the time ballet starts back.  It is an estimated four to six week recovery time.  I have cleared our schedule as much as possible of appointments so we can all just take it easy and let Elizabeth rest for the next few weeks.

Thank you again for all your prayers. Prayer is very powerful and makes a huge difference.  God hears our cries and is always so faithful.  May God bless you back 100 fold.

Psalm 36:5  Thy mercy, O Lord, is in the heavens; and thy faithfulness reacheth unto the clouds.

blessings,

susan  

Family Updates

Sand cherry blooms

Thank you so much, for all of the emails, calls and comments, of prayers and encouragement, for our family over the last many months.  With such a large family, we always seem to have a few pretty serious things going on and always appreciate being held up in prayer.  Thank you and Gods many blessings upon you all for it.

I am going to do one big update post, to answer some of the asked questions and will start with Tim.  He was diagnosed with stage three kidney failure several months ago.  His second blood work showed a bit of improvement.  He has been on medication to neutralize his blood acids to make it easier on his kidneys and is on a VERY restrictive diet.  The diet has upset his Addison's Disease quite a bit but seems to be leveling out again.  He had an appointment with his kidney doctor recently and Glory to God his kidney numbers continue to improve.  He is now one point away from being moved from the critical stage three to stage two.  We are very excited and praise God for this improvement.  The doctor does not want him to change anything he is doing right now, to try to get even better numbers.  The bad thing is, Tim has lost a huge amount of weight and is very thin and tired all the time now, even weak, if he does to much.  If he is moved to stage 2 failure, he will be allowed to eat a lot more foods, with more calories in them and it will greatly benefit his weight issues.  Please pray that Tim;s kidneys will continue to improve, he will gain in strength and energy and will put some much  needed weight back on.  He is still able to work and drive.  I try to have everything done around here when he gets home from work, so he has little to do but relax and enjoy the family.  God is so good and we are so excited about the improvement in numbers.

Our son Stephen is doing very well.  He has lived in an apartment since moving out on his own eight years ago.  He has decided he would like to move this year and buy a condo or small home.  He has been sending me many links of homes he is considering and it has been fun to go over some of them with him.  He should be moving to his own home very soon!

Antonio is doing well.  He had the botox reaction ten months ago now.  He was paralyzed for several months from it and has had reoccurring issues from it all.  He will do well for three weeks or so and then relapse.  Praise God he has had no major episodes in the last two months.  He is still not back to how he was before the botox poisoning so we are beginning to think this is Antonio's new normal.  He sleeps during the day a lot more than he did.  He is also  not as strong as he was.  He is still a happy young man but has many days at a time we do not see his huge smile, is quite and not as talkative as he has always been.  All in all we are so grateful to be over the horrible regression episodes and thank God that Antonio is ok and doing better in his health now.

William is still going to the local college GED program.  He has completed and passed three sections!  Only math to go!  He is still having health issues.  We finally had his genetics appointment that we waited almost a year for.  He will now begin a long series of test to try to get to the bottom of it all.  We are so grateful.  It will hopefully get us the diagnosis and help we need for him.

Carolyn is doing very well.  She is busy with ballet, helping me, doing schooling and trying to learn to crochet.  She is still my right hand girl and such a big help with the little ones.  She loves working with them and is so good at it.  They all love her as well.  Her new little dog, Bella, is doing well and brings her great happiness.

Zeke is doing very well in school.  His behavior has been a bit erratic at home, from so much back and forth to school and lack of routine while there but he has behaved well at school so I cant complain.  He participated in the local Special Olympics this year and went to the dance afterwards.  He was so excited about it and did great.  He got three ribbons, One second place and two third place.
 

Elizabeth is doing very well with her home schooling this year.  We changed a lot with her schooling this year and Praise God it has been a good fit for her.  She has for the first time finished her whole math book for the year and is accomplishing a lot of work each week.  She is nervous about her up and coming surgery as she has not had a surgery since she was eight.  She does not remember what it is like to go through a surgery and recovery.  We are making every concession to prepare her and make her feel comfortable with it as we can.

Billy loves dill pickles.  Tim found this huge dill pickle and got it for him as a surprise.  This is his sour pickle smile.  :)

Billy is doing very well.  He still struggles with his behavior and being nice to others but over all he is much improved.  He was recently discharged from Physical therapy, occupational therapy and feeding therapy!  I never thought we would get to the day he would self feed but here we are!  He is feeding himself with verbal promps, to keep putting food in his mouth and to keep chewing.  I no longer have to feed him every bite, every meal!  He is a very smart little guy and doing well with our home schooling.  He is a joy to teach and I love the deep, well thought out questions that he asks, all day long.  He is never still and rarely quiet!

Timothy is also doing well with is feeding and has been discharged from feeding therapy.  I think because he was younger when he came here, that he started self feeding faster and I don't have to remind him to chew all the time.  He will need PT and OT therapy for a good bit longer as he has autism and far from where he should be in those areas.  He has started to put several words together and is paying more attention to the world around him.  I recently had to put him back on the dairy free/wheat free diet because of his behaviors and now he has settled down again.

Kinsley is doing very well.  She was tested a few months ago and tested as a two and a half year old and she was not even two yet!  She is very smart but has almost no words to communicate with.   Language is very hard for her.  She understands everything we say but speaks to us in sign language.  She is progressing in language but it is very slow going.  She can say ma ma, da da, Peppa, Blue and she just started saying up and purple.  She is having to memorize every word individually, which will take time.  She will be starting vision therapy soon, to help her learn to navigate her world, with her vision issues.  She is still in PT, OT and speech therapy and will be in them for a while.

Please keep my health in your prayers as well.  God is so good and I believe He has a plan for us and for our future, to bring us peace and not evil, to bring us an expected end.

May the Lord God of Israel, Maker of heaven and earth and all that is there in, pour out his abundant blessing upon you as you live and grow in Him.

Jeremiah 29:11  For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.

Blessings,

susan

Elizabeth's Medical Updates

The weather here has been just lovely.  We took a two week break from home schooling.  The children have loved playing outside and helping me with little projects around the farm.  God has helped me get so much done outside.  It has been very relaxing and nice.

When we started back into this foster/adopt journey, life was very intense and hard at times.  The children God placed here were so needy, I had to let a lot of farm and house things go in order to insure bonding with the children and to best help them.  They are all doing so much better.  They are growing and maturing to the point, I can now have a few of my older children supervise them on the play ground, for short periods of time.  Enough time to work on gardens for short spells or do little projects close by.  It has been so nice.  God is so good.

Things have been going well here but when you have a house full of children that are medically fragile/special needs, there are things that are going to come up with their health often, we try to just trust God and take them in stride.  The newest health issues have been with Elizabeth.  She was born very fragile, with many serious life threatening health issues.  She has done very well, by the grace of God but there are things we have to monitor her whole life, like her air way,  her hearing loss and her heart.

She was born with a three chamber heart and will need open heart surgeries, every so many years her whole life, to replace the parts they put in to fix it.  These parts do not grow with her and break down over time.  When they constrict or get pin holes and tears in them, she needs open heart surgery fast, in order to fix the issue before it becomes life threatening.

Elizabeth also has scoliosis.  She is checked every six months to keep an eye on it.  Her last orthopaedic appointment in March, showed that she had gone through a growth spurt and needs to have her back rodded as soon as possible.  The doctor wanted to do the surgery this month.  Elizabeth cried.  She did not want to miss her ballet classes and June 4th recital.  The doctor looked at his schedule and has scheduled the surgery for June 22.  BUT...

Elizabeth has been having shortness of breath, low stamina, heart palpitations, blue hands and dizzy spells for the last three months.  They have become a daily thing.  I have a pulse-ox machine here at home and her oxygen levels have stayed good.   I took her to her heart doctor on Thursday and he did an EKG and it came back good.  She wore a heart harness for 24 hours to capture these episodes and see what exactly her heart is doing.  It came back good as well.  She had an ECHO cardiogram, which came back the same as six months ago.  No worse.  Her replaced conduit has moderate stenosis no different than last ECHO six months ago.   So... Her growth spurt may have made the stenosis more of an issue or things are pointing to that she may have outgrown her airway.  She was trached when she was four months old.  Her vocal cords are paralyzed in the closed position.  She needed a trach for many years.  She finally grew enough, until she had room in her airway to breathe around her vocal cords.  Her airway has a lot of scar tissue in it and gets tight as scar tissue builds up and does not grow and stretch over time.  It actually thickens, constricts and often gets granulated tissue bumps on it.  Those have to be lazered or burned away, to make more room in her airway so she can breath.  Sometimes she also needs her airway dilated to stretch that scar tissue area that has constricted.

She can not have her back surgery till we get to the bottom of what is causing these other symptoms.  One other thing it could be is that her scoliosis is actually putting pressure on her enlarged heart or lungs a bit.  Though all doctors involved thinks that is unlikely.  She had blood drawn for blood work to check all her organs.  So we pray and wait...

God is so good and I know that all things are in His mighty hands.  He loves Elizabeth more than anyone else ever could and has a plan for her and her life.

Isaiah 43:2  When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.

 

Blessings,

susan