Optic Nerve Hypoplasia

Today I am going to do a little update on our baby "K", for those who have been following her stay here, are praying for her and know her.  This post is going to have quite a bit of medical talk in it, so please bare with me, as it may help or encourage someone else going thru anything similar with their child.

When we were contacted to take in baby "K" as a foster placement, we were told that she was a four week old preemie, that was heavily drug exposed thru the whole pregnancy and had some feeding difficulties.  We prayed about it and took her on a one week trail placement.  By her second day here, we knew she was meant stay, as she fit into our family so well.  She has been the best baby we have ever cared for.  She is good natured, pleasant all the time, sleeps well and is very laid back.  We all love her dearly and have commented, how just spending time with her relaxes us and brightens our day.  We have all said at one point or another that we need some baby "K" time.  She is beautiful to boot and an amazing blessing to us for as long as God chooses to have her with us.

But...she has had many medical issues make themselves known the longer she stays.  This often happens when doing foster care of an infant that was as drug exposed as she was.  It is like unraveling a mystery when trying to get to the bottom of all the health issues.  We see something that is not right...we go to the pediatrician about it...get sent to a specialist...and they send us to two or three more.  We have been to so many appointments this year with our foster placements, I am ready for next year to begin.  I am going to try to keep my schedule lighter in 2015.

The very first day baby "K" came to live with us, I noticed her very low muscle tone.  It was worse than Elizabeth's or Zeke's when they were infants and they both have Hypotonic Cerebral Palsy.  Her joints pop, creek and her bones slide in and out of place when I bathe and dress her.  I am very gentle and it never seems to bother her.  When she came, she had strabismus and nystagmus as well.  After she had been here for a few months, I also noticed that she never made eye contact, didn't track objects and only reacted to light and dark.  I was very concerned, as usually by two to three months old, all of the infants I have ever had in our care, could do these things.  Praise God the strabismus has improved and nystagmus stopped when she was four month old.  An MRI was scheduled and a trip to the Pediatric ophthalmologist.  The MRI showed she had Hypoplasia of the Corpus Collosum.  (Very thin bridge that connects the two halves of the brain)  This explained a lot, as she was very behind in meeting any milestones and never used both halves of her body together to do anything.  She actually just started to use her left arm a little in the last eight weeks.   She was also diagnosed with Hypotonic Cerebral Palsy when we were at the neurologist.

In September, when we went to her ophthalmologist appointment, the doctor said it looked like her optic nerves were ok.  At that appointment he said she might have Cortical Visual Impairment or Delayed Visual Maturation.  But we went back in November and he said he could definitely see the optic nerves were smaller than they should be and diagnosed her with Optic Nerve Hypoplasia.  We were not surprised at this diagnosis, as were told this condition often goes hand in hand with the Hypoplasia of the Corpus Collosum. (when she was diagnosed with that)  He said that her right eye optic nerves were much smaller than her left and that the left was slightly small than they should be.  So now we at least have a diagnosis for her eyes.  I must say that over the last many months she has begun to use what vision she has.  It still does not seem normal.  But she will smile at me if I smile at her first, if I am with in five feet of her.  She looks around at things, does slowly track things now and loves to look at TV, kindle and I-phone screens.  She seems to see things better if they are back lighted.  The ophthalmologist said we will not know the extent of her vision, till she can speak or be tested better when she is around four years old.  He did decide to hold off on surgery for her strabismus because her eyes are lining up more and more as she uses what vision she has.  Those muscles are getting stronger.  Praise God!  Remember how I said sometimes we go to one appointment to walk away with another appointment?   Well, Optic Nerve Hypoplasia is one diagnosis we were praying she did not have, as it usually has a whole slew of other health issues that go hand and hand with it.  These health issues that are all hormonal, are tied to the pituitary gland and can appear at any point in her life.  She will need to be tested for Hypothyroidism, Hypopituitarism, Estrogen, progesterone, cortisol levels for Addison's disease, Hypoglycemia as a side effect of many of these diagnosis, antidiuretic hormone and growth hormone regularly the rest of her whole life.  Whew.  Any of these thing plus seizures could happen at any age her whole life and need to be watched for.  She will also need to be followed by the ophthalmologist, as most people with this are blind or legally blind and are at a higher risk of cancer on the optic nerves. I am very grateful that she can see, as when she came we knew she could not.  So any vision is better than none at all.  It has improved so much, we are praying it will continue to do so.  God is so good.

So over all...  Baby "K" is just turning 8 months old.  She is missing some of her brain bridge that connects the two halves, so that is making it very hard for her to learn to use the two halves of her body together to do things like play and move.  She has very low tone cerebral palsy and that is also hindering her from having the strength to do what she wants to do and progress.  She has qualified for Physical therapy and Occupational therapy.  She still aspirates on her saliva, so does not cry or try to coo much, as it throws her into a coughing fit, from the saliva being aspirated and she does not like that.  I still have to thicken her formula or she aspirates.  She is however, doing well with eating thick baby food from a spoon.  Things like Avocado, Sweet potato, vegetables and fruits. She actually likes to eat better than nursing.  As she does not choke at all when eating.  She is in feeding therapy as well.  She has always been extremely constipated, with her over all low tone, making it very hard for her to potty.  Since starting foods, this has helped her so much in that area.  Her optic nerves are to small and underdeveloped, so her vision is impaired but we don't know to what extent yet.  We are in the process of getting an appointment with an endocrinologist, to check out all of the things that can be effected by having optic nerve hypoplasia. 

Now for the progress report!   Baby "K" started out very small but is now in the 95th percentile for height and weight.  Yes, a very big girl.  She takes a 12 or 18 months size clothing and is just turning 8 months old next week!  She can now roll over front to back and back to front!  She can hold her head up and pivot around in a circle, on her tummy on the floor, to play with toys.  She can sit in the highchair if I have a towel around her middle to help her.  She can hold a toy, reach for a toy and is now finally using both hands to play and can transfer a toy from one hand to the other.  She also just started to put in her own passifier if I hand it to her.   She also can now jump a little when in the bouncer/play gym. 

Baby "K" is really a joy.  She has been a gift from God, to our life and home. We have seen God already do such a huge work in her life and body.  Even though she has been a lot of work in so many ways, she is well worth it, as all children are.  She is so sweet, that the work to care for her is a joy.  We all love her so much!

1 Peter 1:8-9  Whom having not seen, ye love; in whom, though now ye see him not, yet believing, ye rejoice with joy unspeakable and full of glory:  Receiving the end of your faith, even the salvation of your souls.

Blessings,

susan

Antonio Is 20!!!

I was reeling from the death of our daughter, Faith Anne, when I saw Antonio's picture on My Turn Now.  He is the only one of our adopted children that I felt instantly drawn to the moment I saw his picture.  I don't know what it was about him.  In the picture he was not smiling, nor did he look like he could respond to his environment but at that moment I didn't care. 

I just wanted more information about him.  I wanted to meet him and scoop him up in my arms and love on him.

When we got his packet, we learned so much.  He had been in care since the day he was born.  He was born a 23 week preemie, to a young addict, who surrendered her rights right away.  She did not know who the father was.  A case worker snapped a Polaroid of his mom while she was in the office signing papers.  I am grateful we have a picture of his biological mom for him.  I am grateful to her that she carried our son and gave him life.  She never would know what a treasure he is and how loved he is by us all.

He was born so early that he spent his first  year in the hospital.  He had many surgeries and troubles to overcome in order to live.  He had several brain bleeds resulting in him needing a shunt from hydrocephalus.  He blew a bowl and needed to have a colostomy bag for a while.  He had preemie lungs and needed a lot of support.  When he was finally stable enough to be released from the hospital, his first foster home could not handle his care and asked he be moved.  He then was taken in by a very nice elderly, single, foster mom.  She loved Antonio so much.  Sadly, there were no pictures taken of him in the first five years of his life.  The earliest picture I have of him is a school picture that they had sent home to his foster mom and she gave us of when he was five years old.
 
When we were cleared to go and visit him, he was five years old and his foster mom was 70.  She cried when we met him and told us no one had ever tried all these years to adopt him.  That she had been praying fervently for a family for him because the only reason why she was still fostering, was for him and she knew she could not lift and care for him much longer.  Oh how she loved that boy...so much, that she never made him wear any of his leg braces or glasses.  She would make the therapist leave her home if they made him cry.  When we would go for a visit, he ruled their house and would be on the couch all propped up, with pillows all around him, on her couch watching TV.  She didn't make him do anything he didn't want to do, including eat.  When he moved in with us, he had just turned 6 and weighted 24 pounds.  The first thing we did was had him evaluated for a G-tube.

We had the surgery done and they also did a flundo so he could not vomit.  So he kept his food down better.  He began to grow and put on weight right away.  We also made him wear his glasses.  His eyes were very crossed and he would take his finger and hook it around the bow and give them a yank and toss them across the room.  He broke several pair before he learned I was going to just keep putting them back on every time.  After wearing his glasses for a few years, his eyes are fine and he needs no glasses at all anymore! We made him stand in his stander and wear his leg braces.  He quickly learned to love therapy and enjoy the long process of getting him ready every day. 

Believe it or not, we were also told that he swore like a sailor and spent most of his time at preschool in time out.  We have never heard him say one bad word in his whole life with us all these years.  He has been nothing but sweet and joyful almost every day.

We had a very ruff start with him medically.  As he had 15 shunt failures back to back when he came.  It was exhausting.  The long hospital stays and we had many children back then as well. Twice he got brain fluid infections from the surgery and we had to spend months at the hospital treating with antibiotics till all the infection cleared and he could have a shunt put back in. 

He has had to have a hip reconstructed,

his back rodded

and many other surgery and hospital stays over the years, for everything from pneumonia to flu.  Even though he has went thru so much, he has always stayed happy and upbeat.  He gives out complements to all he meets and has prayed, out loud, off and on, day and night since he was a little boy, for prayer needs he knows of.  He has almost always been a well behaved, grateful and happy guy.  He has grown into a strapping, very muscular, young man.

I have to admit, when we adopted Antonio I did not think this far into the future.  I mean Tim and I prayed about adopting him.  We talked about how we would care for him as he grew but we had no idea the amount of care and work it would be to care for him as an adult.  He is huge.  He is heavy.  His body is very stiff and like moving a large odd shaped jack.  We have to be very careful.  His medications and breathing treatments HAVE to be given every day at the correct time or he gets very sick quickly.  His lungs fill with fluid.  Also, there are many meds for  his digestive system or it ceases to function properly.  It is all a very delicate balance.  All I can say now that Antonio has turned 20 is that it was all worth it.  He is so worth every moment of time, every pulled muscle, every dime spent, every prayer prayed.  He is the most wonderful son and such a joy to have as part of our family every day.  God bless him for all the happiness he has brought into our lives.

Of course Aunt "S" made Antonio his cake.  He wanted Bob and Larry!  Thank you Aunt "S" and Uncle "B" for all you do for the children to make their lives special.

Happy birthday my sweet, happy, grown man!   We love you more than you'll ever know!  May God give you healing and happiness all the days of your life!

Numbers 6:24-26  The Lord bless thee, and keep thee:  The Lord make his face shine upon thee, and be gracious unto thee:  The Lord lift up his countenance upon thee, and give thee peace.

WE love you so much!  Dad, mom, Stephen, William, Carolyn, Zeke, Elizabeth, "T", "B" and baby "K"!

Where We Were and Where We Are

I can hardly believe we are in the month of December already.  Ever since the two foster toddlers have been added to our family, in February, life has been literally non-stop in appointments, daily work and intense child care.  Trying to help children, of any age, over come a hard past, is not an easy task.  To be honest, it is a lot harder than what I remember.  Maybe it's because we took several years off from foster care.  Maybe it's because these two toddlers are just more intense than children we have had in the past.  Maybe it is my age but it definitely has been harder to work thru this time around.  When I have a hard day or get discouraged, I look back and remember what the toddlers were like when they came and realize they have really come so far.  They are not the same children that came to us 10 months ago.  God has done a great work in them and still is.  The boys were neglected and exposed to so much that was not good in their short lives.  So many things were not done, that should have laid a good foundation for their growth and development.  We are having to go back and help them learn some things and unlearn others.  These things can not be done in a short period of time but will take a while to overcome and get past.  All in all, the boys are doing well.  I will give you a short but honest and for real, update on each of them.  Things I have not felt to share but will now, to encourage myself and help encourage others that have just gotten a hard foster child and can't see the light at the end of the tunnel yet.


"B" just turned 3 years old in November.  He is in feeding therapy as he can not chew food well and does not self feed.  Nothing is wrong with him physically.  His mom just had him on a bottle for the first 2 and a half years of his life.  The only solid foods he was fed, were snack cakes and bags of chips.  We found out he has six cavities that need filling, in his front teeth, from bottle rot.  When he came to live with us, meals took forever.  Not only to get him to chew and eat but to eat healthy food.  Now, he eats anything we eat but the average meal, for him, takes about an hour and a half, with me feeding him almost every bite.  He eats very slowly.   He only feeds himself about five or six bites of a whole meal.  I have a teething/chewing toy I clip to his shirt during the day for him to mouth and chew on to help develop those chewing muscles.  He still sits in a high chair as he smears food all in his hair and over his body at every meal and he can not stay seated unless strapped in. 

When he came, he was not potty trained.  He potty trained very quickly but used his excrement and urine to....hmmm... lets just say....make a statement when he was mad.   He is no longer pulling out his little boy part and urinating on everything when he gets sat in time out or scolded.  Praise God!  But will still do the other sometimes.  He is a very smart child and learns very quickly.  When he came here, he knew 20 words and two were very bad.  He now knows his letters and letter sounds, numbers, shapes, colors, body parts, animals and so much more.   He talks all day long non-stop and is constantly asking very good questions.  He is VERY active and has trouble sitting still.  He loves for me to read books to him and cry's when I have to stop.   He loves doing anything educational.  He is a lot of fun to teach.  We are still having issues with him being violent toward his brother and the other children in the home.  It has gotten better but it is not gone.  He used to scream and kick my van or bus window the whole time we went anywhere when he came and would try to get out of his car seat.  (We were told by DFCS the boys were tied in car seats their whole life before we got them)  So I can understand the trauma of being restrained in a car seat for them but this still made it no easier to ignore while driving everywhere.  Now, he no longer does that.  He happily climbs up in his car seat and even tries to buckle it himself.   He understands we are putting him in, going somewhere, will then come home and he can get out.   When he came, he used all toys as weapons or tried to break them.  Now, after months of my children "playing" with him and modeling appropriate play, he will play for a short while before trying to break something.  He rarely uses toys as weapons anymore.  Thank God.  These are just some of the areas and things that have went on that we have had to try to manage. He gets Physical Therapy, Occupational Therapy and Feeding Therapy.  He needs them all because he was not let down to play, like in a functional home or from not being fed properly.  We love him dearly and he is doing so much better all the time.  He has two or three good days following a hard day.  That is much better than it used to be...a constant battle every day, all day long, to behave and control himself.    All the Glory to God. 

"T"  just turned 2 years old.  He is so much younger than "B", that he has overcome much quicker (comparatively) and easier the issues he came with, than his brother.   Because of the neglect, "T" was very immature and acted much like a baby when he came, so he has less anger and less inappropriate behaviors to over come.  Both boys screamed off and on day and night when they first came.  They did this for at least eight weeks straight.  It was a high pitched scream, from them detoxing the meth that was smoked regularly around them.  They would not be comforted.  They only thing that helped some, was giving them a bottle.  At about eight weeks it slowly started to subside.  "T" also is a climber.  He would  not be contained and needed constant supervision.  We zip-tied toddler gates all around the top of the crib making it taller.  So tall, that I broke my ribs putting him to bed one night when Tim was out of town.  (Tim is much taller than I am)  Finally, I sewed "T"'s pajama legs together, with a narrow towel, so he could not hike his leg over the side.  Praise God that worked.  (got the idea off the internet)  Neither boy could fall asleep on their own or slept thru the night for a long time.  If I tried to put them down, with out me helping them fall asleep, they each exhibited bad self injurious behavior.  "B" banged his head and broke off pieces of his hair while screaming,  and "T" poked his eyes and bit hard on his nail beds.  His nail beds were actually inverted (cup shaped) when he came and I didn't know why, till I saw what he did when he was upset.   I started out rocking and singing them to sleep, with the only bottle I allowed them for the day and putting them down.  After a month of that, I was exhausted.  As it took over an hour for each boy.  So then Tim and I put them in bed with us (with "baby praise" music playing) till they fell asleep and then moved them to their beds.  After another month or so of doing that, we started just putting them in their own bed with the same "baby praise" music playing.  They would wake and scream every three hours or so.  They did this for many months.  Now we can put them into bed and they are happy to go.  I can walk in and out of their room and if they are awake they do not cry for me.  They also both sleep straight thru the night!  Glory to God neither one of them do any self injurious behaviors anymore!  (They both used to hit themselves and kick their feet hard when I put them in time out and they don't do this anymore either)  I was very concerned about these behaviors and the fact they are gone is a true miracle to me. Praise God! 

"T" had a lot of tummy issues and didn't seem to be developing, so we took him in for testing for food allergies.  We found out he is casin and gluten intolerant.  Once we took those things out of his diet, he was less clumsy, came out of a fog in development and has learned so much very quickly.  When he came he also had been bottle fed milk day and night and ate snack cakes and chips but because of his young age, he excepted good food much quicker and eats anything we eat very well.  But he also does not self feed.  He eats about 10 bites himself throughout his meal and I have to feed him the rest.  Needless to say, meal times are still not a fun time of day for me, as I have to feed both boys almost their whole meal.  They will only eat for Tim and myself, so the other children in our home can not help me with this.  So meals take a while.  On the upside "T" graduated out of his highchair a long time ago.  He is a very neat eater and sits very well at the big kid table.  All in all, I would say that "T" is now a normal acting 2 year old little boy.  He is such a joy to be around and when in trouble it is normal typical two  year old trouble, like climbing or sneaking somewhere to get into something he knows he should not touch.  Glory to God.

This post is getting long so I will do a separate update post on our foster daughter baby "K" at a later date.

I give glory to God for answering our prayers of  "What to do with our future years to serve Him".  We prayed this prayer for many years and God has led us back into foster care.  I praise Him for bringing the children into our home He wished to be here and for giving us the strength and help needed to get through every day.  That when I have felt like quitting He has made it clear we are where He wants us to be.  When I have felt like I could not move forward, that He has given us peace in some form for even a hour before heading back into it all again.  The nights are so much better and the days are getting better all the time.  The children are bonding and becoming a part of us...the Nichols.  They are starting to talk like us and act like us.  We love them all dearly.

Lord, please shine your light down on the path you wish for us all to take in our lives.  Give us the Fruit of Your Spirit, to do all things in Love, Joy, Peace, Patience, Kindness, Goodness, Faithfulness, Gentleness and Self Control.   Living our lives for You because you gave your Son for us.

Philippians 3:14  I press toward the mark for the prize of the high calling of God in Christ Jesus.

Blessings,

susan