New Years Eve!

 A flower given to Carolyn today in memory of a very special someone to us.

Every year the children look forward to New Years Eve.  We are pretty strict with what the children are allowed to eat on a day to day basis.  We try to eat as natural as possible and avoid as many processed foods as we can.  By the grace of God, it does make a difference in how healthy the children are but also avoiding dyes, refined sugars and other processed foods effect the moods and energy levels of the children.  I vote for calmer children, so it is worth the effort, being I am with them all day long.  The children are only allowed soft drinks on their birthday, on Thanksgiving and maybe if we go out to eat once or twice in a year.  They get very little candy or sweets at all, unless given to them by people we know, or we bake them ourselves. 

A flower given to Elizabeth today in memory of a very special someone to us.

So you might guess how excited they get every year…because on New Years they each get to pick anything they want to eat for the celebration.  Tim always makes punch out of ginger ale and sorbet.   So that in and of itself is a treat.  But starting the day after Christmas I put a piece of paper up on the fridge with all the  childrens name on it.  As they think of the one thing they want the most, they write it down.  The weekend before New Years, Tim and I go shopping for what was on the list.  This is the list from this year. 

Elizabeth wanted all the stuff for make your own sundaes.

Zeke wanted gluten free chocolate muffins

Carolyn wanted all the fixings for make your own sub sandwiches.

 

William wanted Oreos

And Antonio wanted Pringles in Ranch, cheese and loaded bake potato flavors. 

 

We always get enough so they all can enjoy what was picked by the other children.  I am always amazed at the types of things they pick.  As I chuckle to myself that the things they pick really are not all that unhealthy. 

Once their feast is prepared they lay around eating and watching movies till midnight.  Tim and I put no limit on them.  They can eat all they want.

This past year sure went by fast.  I praise God for 2013.  For God being our God.  For salvation thru Jesus Christ.  For my husband and children, family and friends.  I am so very grateful for it all.

Lamentations 3:22-23  It is of the Lord's mercies that we are not consumed, because his compassions fail not.  They are new every morning: great is thy faithfulness.

May God bless 2014.  May His mighty hand of protection be upon us all.  May He lead and guide us in all decissions we have to make.  May He provide for our every need and may we be faithful to spread the gospel to all we meet for Him.

Blessings,
susan

Ballet Class

Right before everyone got sick for the holiday, the girls ballet studio had parents night.  A night parents can come to class with their child so they could see what class was like for them.  Tim and I both went and enjoyed it so much.  Here are some of the pictures from that night.  I know they are all pretty blurry but it was taken from my seat and the kids were moving a lot.

Elizabeth is in the very corner of the room and Carolyns place is right behind her.  Sisters side by side.

Doing their back bends.  They work so hard.  Elizabeth works twice as hard because of her Cerebral Palsy.  She held it a while and then gave out.  Bless her heart.

They do 100 sit ups each to work on core strength and then all kinds of floor stretching and leg lifts.

Then they do all kinds of bar work.

They did leaps for us and part of their routine they are working on for thier recital.  It was a wonderfully special night.  Tim and I enjoyed it so much. 

Carolyn and Elizabeth love ballet so much and look forward to it every week.  God is so good to bless us with such a nice studio in town so the girls can attend.  God is so good.  It is amazing how far the Lord has brought them thru the years.

Psalm 149:3  Let them praise his name in the dance: let them sing praises unto him with the timbrel and harp.

 

Blessings, 

susan

Elizabeth is Home!! and Merry Christmas!!

Today when I woke up all of the children were on the mend!  None of them had fevers, Praise God!  They all have lingering coughs but feel much better.  They had all been missing Elizabeth so much, that I had planed to take them over to the hospital today, to visit with their sister for a bit.

I, myself, had a very high fever for three days and nights and could not take anything to bring it down because of all my sensitivities to fillers in medications.  In the night God told me to take a shower and while taking that shower my fever broke Praise the Lord.  I slept the whole rest of the night.  I am so grateful.  I feel so much better. 

Then Tim called and said Elizabeth's doctor came by and said that after one more bag of IV antibiotics Elizabeth could be released. Praise God!  They were not sure how long that would take so still wanted us to come by.  So we did.  We do not have pipped in TV so all of the children loved watching the TV in Elizabeth's room.  A show was playing on how they make snack foods?  How it's Made?  Very interesting and educational.  Now I see why I don't like my kids eating them!  :)

Elizabeth is coming home with a heavy duty oral antibiotic.  We are to go to the doctors in a week but if she spikes a temp at all I am to call her cardiac doctor and take her straight down to Egelston Children's Hospital for further treatment.

Every Christmas we eat at Waffle House.  I know kind of strange.  But we rarely eat out and it is the only day of the year we eat there.  My children love going there, it is a huge treat.  They love the chocolate chip waffles.  The jukebox music and all the attention they get from the waitresses.  We thought we would not be able to go this year but Praise God we stopped by to eat on the way home from the hospital.

 We usually go for breakfast.  It was much later in the day when Elizabeth was released, so it was not nearly as crowed this time.  The children all enjoyed looking over the menus and ordering.  It was a nice celebration too because Elizabeth was released from the hospital and also that we are all feeling so much better!

I know we don't all look our best but Praise God...He carried us thru again.  God is so very good.  Always!

Revelation 15:3-4  And they sing the song of Moses the servant of God, and the song of the Lamb, saying, Great and marvellous are thy works, Lord God Almighty; just and true are thy ways, thou King of saints.  Who shall not fear thee, O Lord, and glorify thy name? for thou only art holy: for all nations shall come and worship before thee; for thy judgments are made manifest.

Thank you to all who prayed for us going thru this hard time.  It really came out of no where and knocked us for a loop.  God is so good.  Merry Christmas and may His blessings be upon you all.

susan

Elizabeth is Still in the Hospital

She is still in the hospital but we heard very good news this morning.  She had her first negative blood culture which means the IV antibiotics are working to kill the infection.  Also her echo was comparative to her last one that was done just a few months ago.  So glory to God no damage has been done to her heart muscles or valves that they can see. 

She has to have five consecutive negative blood cultures, five days apart, before they can stop the antibiotics.   The infectious disease doctor said it is a very aggressive strain of bacteria and we need to be sure it is all gone before we stop the IV antibiotics.  We were hoping that she would be discharged today and that they would just leave her IV port in and we could run her over to the hospital daily so she could get her IV antibiotic infusions.  But it is getting late and we have not heard anything.   Tim said the infectious disease doctor has not cleared that plan of action yet.  He also said that the nurse said there is another blood test ordered for tomorrow so I guess they will not be home today.

The rest of us are still very sick with this flu.  I am trying to stay on top of all the children’s care (breathing treatments and Advil) but my body does not want to move very much.  Praise God William is recovering ahead of everyone so he has been very helpful.  It is a respiratory flu.  High fevers, chills and sweats, achy everywhere, exhausted and coughing a lot kind of flu.   I have the children all camped out in the living room watching movies as they rest and sleep.   Tim has been with Elizabeth the whole time tending to her and he is very sick with this flu as well.  Bless his heart.

I will update as I hear anything new.

I pray you all have a very Merry Christmas!

Luke 2:8-20  And there were in the same country shepherds abiding in the field, keeping watch over their flock by night.  And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid.  And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.  For unto you is born this day in the city of David a Saviour, which is Christ the Lord.  And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger.  And suddenly there was with the angel a multitude of the heavenly host praising God, and saying,  Glory to God in the highest, and on earth peace, good will toward men.  And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us.  And they came with haste, and found Mary, and Joseph, and the babe lying in a manger. And when they had seen it, they made known abroad the saying which was told them concerning this child. And all they that heard it wondered at those things which were told them by the shepherds.  But Mary kept all these things, and pondered them in her heart. And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.

Medically Fragile Children

God has been so very good to us.  When God brought each of our children to us some had special needs like Fetal Alcohol Syndrome, feeding issues or were a preemie and needed extra care.  But some were not only special needs but were Medically Fragile as well.  My two children that are still considered medically fragile children are Antonio and Elizabeth.  God has been gracious.   When those two first came to live with us it was touch and go for a while.  We had frequent hospital stays and emergency crisis.  We had to stay on our toes in breathing treatments, medication and pay close attention to every detail as one missed thing could mean a stay down town at our local children’s hospital.  A common cold would go thru the house and everyone would do fine but it would put Elizabeth and Antonio into the hospital for days, sometimes turning into a life threatening infection or pneumonia.  They both have lung disease…breath shallowly and do not have a productive cough. 

As the children have grown God has helped Elizabeth and Antonio to become strong and healthy.  We have much fewer hospital stays and middle of the night emergencies.  Praise be to God, as I am getting older and those long hospital stays were rough.  Tim driving down to Atlanta, that is an hour away, to spend nights with a child and me caring for the other children and farm.  Then during the day he would drive all the way back to our town to work and I would pack up our crew and home schooling material and drive to spend the day with which ever child was admitted.  A few times we had a child in the hospital for a few months straight and a few times we had more than one child hospitalized and Tim and I just had to do the best we could do to get thru it all. 

Now days I hardly remember Elizabeth or Antonio are medically Fragile.  They seem so very strong and healthy to me.  Unless I am at a cardiologist appointment for Elizabeth viewing her recent echo-cardiogram or Antonio’s most recent x-rays of his spine… than I remember how God is sustaining them and that it is truly a miracle they both are even here.

The girls had a friend come and spend the night for the weekend last weekend.  They had such a good time.  Sunday Elizabeth woke up with a very high fever and no appetite.  So I did what I do in that situation.  QUARANTINE!  You laugh…But really.  You do the math.  7 people in the home.  Yup 7.  And then how long it takes for any virus to make its way through all of us.  That equals weeks of nursing sick children and a hubby at times, extra cleaning and disinfecting in the home and sometimes in the worst case scenario…tons of extra laundry and a hospital stay for a child or two.  Whew…so I stand by it.  I quarantine just to be on the safe side.   We also took the little friend that was visiting home just in case this was something contagious.

Above is normal heart rate and O2 level for Elizabeth while sleeping.

I took care of Elizabeth all day Sunday keeping a close eye on her lungs and oxygen levels.  She normally runs about 94 percent when up and around during the day and 96 or 97 when sleeping.  Her heart beats about 85 beats per minute.  That is her base line for when she is healthy.    All day Sunday her temp was about 101-102 but I could bring it down just under 100 with Advil.    It was in the night she began to have major trouble.  I could not get her temp down no matter what.  It stayed up over 102 all night.  Her oxygen levels all night were 92.  She was breathing very fast and I could not get her temp or heart rate down.  It was about 160 beats per minute all night.  A very  high heart rate always bothers me as her heart is patched together.  Tim and I both spent time up with her in the night.  Bless her heart she was miserable.  I had her taking frequent showers to try to keep her temp down.  She felt so hot to the touch but had hard chills. By Monday morning I knew we needed to get to see her doctor. 

With any of my other children I would wait it out.  But Antonio and Elizabeth I always get right in, especially if I am not sure if it is viral or an infection.  Since no one else in the house was sick at all I was thinking this was an infection.  She had no cough or congestion and her lungs sounded good to me but I took her in anyways just to be sure.

I only let our main pediatrician work with Elizabeth and Antonio.  He is very hard to get in to see but I was able to get an appointment with him first thing.  He has four offices and he was at the one not in our town but I drove Elizabeth out there anyways.   I was just so glad to see him in person.  As he knows her well and we work well together.   I gave Elizabeth Advil at 6:00 that morning and she was still burning up at his office at 9:40.  So they gave her Tylenol on top of it all.  They did a flu test and strep throat test both were negative.  He did not have a CBC machine there or an X-ray at this office so we went back to our town to his main office to have those two things done.  He also drew blood for a culture that would take a few days to hear back the results from.  The CBC showed elevated white blood cell count and the X-ray was clear.  Because of the CBC we went ahead and did a Rocephin(sp?) shot.  OUCH.  That one is painful but helps so much.  It is thick and takes a while to put in and they cut it with Lidacane to help with the sting of it all.  Bless her heart.  By that time we were stripping off her clothing as she was sweating profusely.   The doctor also prescribed an oral antibiotic to take thru the week till we got the blood culture back. 

She had fevers off and on all week and when I had her at the doctors on Monday she picked up the flu.  Yup.  So all of us now have the flu.  The achey, coughing, high fever type flu.

I also took her back in for another Rocefin shot Friday as I didn’t want to go into the weekend with her being so sick and us having so few answers as to why.

Sunday I got a call from the doctor asking if she had her teeth cleaned recently or braces worked on.  She did have her braces worked on just Thursday before all this started.   Anyone who has a heart condition needs to take an antibiotic before any teeth cleaning or invasive work as there are bacteria in the mouth that once they get into the blood stream target the heart valves and it is bad news.  Yup.  She tested positive for that.  So we had to take her to our local hospital for massive IV antibiotics right away.   She was admitted Sunday.   

Poor Tim with the flu is staying with her right now.  Bless his heart.

We all have the flu so this has been very hard on everyone.  I can not take anything for headaches, body aches or flu because of my allergies to fillers in meds.  God has been gracious and I can push myself praise God. 

Thank you P family for the meal this afternoon.  It was greatly appreciated! 

We are waiting on the results of a new blood culture to see if the antibiotics are working.  We are also waiting to see if they could get a good look at the valves to see if infection has set in, in them.   It is very hard to get a good ultrasound picture of her valves because of all her scar tissue.  So if her heart doctor is not happy with the echo she had done here, they will take her by ambulance down to Egleston to the Sibly Heart Center for an esophageal echo.  Yes, done from in her esophagus. 

We are praying that the culture will come back with less than before, showing what we have been doing is working and that there is no damage to her heart or valves.  They did see one suspicious area on one of her valves. 

I am praying that I can either do her IV antibiotics at home.  I have done them before.  Or that I can bring her to our local hospital daily to have them given. 

Please keep Elizabeth in your prayers.  For protection and healing of her heart and for all of us with the flu to quickly get over it and be able to function again. 

Psalm 34:1  I will bless the Lord at all times: his praise shall continually be in my mouth.

 

Blessings,

susan

Happy 19th Birthday Antonio!!

Antonio being in our family was a God thing from the very beginning.  I stumbled upon his picture while doing research on the internet about children with special needs.  I was grieving the death of Tim’s and my daughter, Faith Anne.  I could not stop looking at his sweet face.   I kept pulling it up again and again on my computer and finely just printed it off for me to keep close.  Every time I looked at his picture I felt an exhale in my soul from the tension of sadness we had lived thru day and night for months.  I showed his picture to Tim and Tim said to ask for his file. 

God had been so good to us.  He was there totally as we walked thru the hard days after Faith Anne’s passing.  I never felt alone.  I cried out why...  I went through so many overwhelming emotions and questions flooded my mind till I felt physically sick.  But… When I felt as if I could not breathe.  God breathed for me.  When I would wake up from sleep, and remember, and it would all rush over me again fresh.  He held me.  He reminded me to get up every day and be there for the ones that still needed me to at least act like I was ok.  God is real and I can never explain how much He was ever present and always has been there thru our life.  But especially, though our journey of adoption of children with special needs.  He has never left us and is with us always to this very day.   

I know…one can never replace a child, ever.  No one could ever replace our precious first daughter Faith Anne.  But when I saw Antonio’s picture it somehow started a healing process in my heart.  An acceptance of all that happened and we had gone through.  A time of taking small steps forward and not just going thru the motions of daily life.  The days of me just getting up and doing the necessities of life and then climbing back into bed every time I had a chance to escape in sleep, were becoming less frequent. 

We did receive his file and received the go-ahead to start visits.  I remember the first time I saw him in person.  Tim and I drove to Atlanta to DFCS for the first introduction.  He was so much smaller than I thought he would be, so frail and tiny.  I had never seen, in person, a child that was five years old and weighed just 24 pounds.  I was a little afraid to hold him.  He was very stiff from the Cerebral Palsy and just bones.  I didn’t want to hurt him.  But his foster mom just walked over and placed him in my lap.  As I held him he talked away.  He was just so precious from the very beginning.  I had long hair and he kept feeling it saying that my hair was the most beautiful hair he had ever seen.  Ok, that did it… I was putty in his hand.  Tim and I were smitten.  From that very first meeting…in our hearts, he was our son. 

We went thru all of the visits, learned his medical history and his care.  Also what to watch for if his shunt was failing,  how to keep a check on his lungs and know when to give breathing treatments.  It was not long and we were doing overnight visits and then he was home forever.  Several months later the adoption was finalized and he was officially a Nichols!

When we received all of his paper work and history, at the time of adoption, I read thru it with great fervor.  I wanted to know about the before.  About his past before he came to us.  I wanted to know every detail about the first five years of his little life.  As I read, I was shocked.  There was not one picture of the day he was born as a 23 week preemie.  Not one mention of all he went through or record of how he celebrated his birthdays.  The very earliest picture I have of him is his school picture taken just a few months before we first met him.  His whole life history packet…even though it was a complete record because he was in care from birth…was only full of technical medical records.  I was so sad over this.  How can a child live for five years and no one snap one picture or take record of even once special day?  I knew that for the rest of his life things were going to be done different.  That even though he was in care his whole life and no one had taken one picture to put in his file.  That even though no one had ever tried to adopt him,  that OUR  goal, was to see him happy and well cared for, for the rest of his life.  Adopted, our son, loved and cherished and appreciated forever.

We have been so blessed by God to have him for our son.  God knew what He was doing when he introduced me to his picture on an adoption website all those years ago.    

Yes, his medical care has been extensive.  Yes, his hospital stays have been many and at times lengthy.  Yes, he has had hours upon hours of therapy.  Yes, his daily care takes a lot of time.  But those things have NEVER been regretted or a burden to us in anyway.  If you could meet Antonio in person you would see.  He is always smiling.  He is always happy.  He is always loving.  He dishes out complements to everyone he meets.  He asks to hug everyone.  Anyone who meets Antonio, that takes the time to have a conversation with him, walks away a changed person and feeling totally blessed.  He loves the Lord with all his heart and is content in all areas of his life.  Even with the way his body is with his CP.  Even when he is hurting or in pain.  Even when he is facing another surgery.  Antonio loves the Lord and never asks why me.  He is a blessing and inspiration. 

As I gave him his shower this morning and chatted away with him.  I was in awe that he is 19 years old today.   As he made a joke that I was the first one to diaper him and dress him as a 19 year old…all I felt was gratefulness.  Grateful that God brought him to us.  Grateful that God brought him through every life threatening illness, infection and surgery.  Grateful and honored for all the prayers he prays for us all every day.  Grateful to be able to care for his needs. 

We all love Antonio so much.  We all spoil him a bit and try to give him whatever he wants.  Because his wants are so few and usually in them, is an angle to do for others as well. 

Oh, God in heaven thank you for Antonio!  Thank you for these 19 years he has lived!

And Antonio…I don’t think you will ever know how much you have meant to us and do mean to our family.  May you have the happiest of birthdays today!  Gods blessings be upon you now and every day for the rest of your life.

Isaiah 40:31  But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Love always and from the bottom of our hearts,

Dad, mom, Stephen, William, Carolyn, Zeke and Elizabeth