Unraveling The Mystery Of A Special Needs Child

When God gives you a child, entrusts you with its well being and care, we do our very best to do what is best for them.  We learn their body language, their likes and dislikes.  We teach them, feed them, love them and help them grow.  But sometimes, if God blesses you with a child with a special need, all that is just not enough.  There is so much more.  A mystery that sometimes we have to fight to find the answers to.  These answers can help us give these children a better life.  Help us understand how to best nurture them and teach them.  Some answers, though we search fervently, we will never know.

We walked this harder road with children many, many times.  Working hard to find doctors that would do tests we felt we needed to have done.  Fighting to get funding for equipment we knew a child would do well with or needed that no insurance would pay for.  Praying like never before, that what we were told by doctors, would not be a bad as what they claimed.  Trusting in our most powerful and gracious God, to have mercy and heal our children, to relieve their times of suffering, to give them a good quality of life.  That no matter what, we pray our children would be saved and happy.

God has been so good.  So very, very good to me.  I thought He was done with me.  That He would not bless me with any more children.  That He had chosen to retire me from raising any more children.  It was a great struggle for years to find the next step in my life and to move on away from having more children.  I prayed and prayed to God about it daily and in February we were doubly blessed with our foster sons. "B" and "T". 

I was over joyed to say the least.  They were sent to us because other foster homes were afraid to take them because they were both hospitalized with staff infections.  We took them and though the road has been very hard at times, with their intense behavior issues.  They are both improving daily and have been such a blessing to us all.   On the hardest days I would remember the years of praying to God about having more children and know all is well and this is the will of God.  I love them both dearly.  We all do.  We can't imaging life without them.  They have had some mysteries to figure out and address.  Such as "T"s severe bowel issues.  After a lot of testing and trial and error, we have found he is not able to absorb fructose or lactose and can not consume dairy.  There is also a wheat sensitivity that was causing him health issues.  But all in all, these children have been and are, very typical aside from their behaviors from neglect and abuse.

But our sweet baby.  Baby "K".  She is the sweetest most laid back baby we have ever had.  When we were contacted to consider taking her, we were told she was born to a mother that used Meth heavily thru the whole pregnancy.  That she was born three weeks premature, had reflux, trouble nursing and that her eyes had strabismus. (where the eyes are not aligned properly and point in different directions)  Baby "K" 's eyes both point outward. 

When she came to us, she was four weeks old.  She had spent two weeks in hospital detoxing and two weeks in a short term foster placement before arriving here.  Oh, what a huge blessing she is.  The toddlers are exquisite and I enjoy them so much but baby 'K" is like frosting on the cake, straight from God himself. 

Pure sweetness but right from the start I could see some struggles for her.  I have tried to give her time, taking into account her being three weeks premature.  I have done therapy with her daily to try to help her and teach her things that should come naturally.  I have enjoyed every moment.

Now that she is 3 1/2 months old and she is not progressing naturally, these concerns need to be addressed and so we start the road of unraveling the mystery of her special need. 

The biggest concern at this point is that I do not think she can see well at all.  I know she can see light and dark but she can not track normal movement and does not make eye contact.  If she is very, very close to my face, like while I feed her her bottle and I move even closer, she looks at me sometimes.  She will track someone walking in front of our very bright front door.  She does smiles because we have all spent so many hours rubbing her face and playing with her but she only smiles when we touch her and play with her.  She did just start smiling recently, once in a while, at the sound of my voice when I speak to her.  If I just pick her up I startle her.  I have to tell her I am there before touching her or she startles.  My biggest prayer for her right now is that she is just late in developing these skills.  We have an ophthalmologist appointment for her on September 8th.  So we should know at that time how much she can see and what the issues might be.

I have had many babies over the years.  My lowest tone babies were Zeke and Elizabeth.  Eventually, they were both diagnosed with Hypotonic Cerebral Palsy.(low tone or floppy tone CP)  Baby "K" has even lower tone than they did at this age.  Thru a lot of prayer, she is now using her legs a little but her arms very little still.  Every day, all day long, I put toys in her hands and bring her hands up together and "hand over hand" teach her to play.  I hang noisy toys over her feet and she will now kick at them to make noise.  I hang them over her hands and arms and I am still having to initiate her to make them move.  She can hold up her head now a bit after weeks of practice but is not even trying to roll over.  I am working with her daily patterning her on how to do it.  I daily work on all of these things with her trying to teach her to move her body.  God is so good.  She is just starting to bring her hands to her mouth and chew/suck her hands once in a while.  Yippee!

She is still having issues with reflux, it happens many times, all day long, that she will have coughing spells from reflux.  About once every other day, she will projectile vomit even out her nose and we have to scurry to clear her airway with a bulb syringe.  The doctors have her on Xantac but it does not seem to be helping and when we tried to thicken her formula to the thickness they wanted it was dangerous.  It takes way to long to clean her airway with such a thick mix of formula and cereal.  It is way to thick for her to clear herself.  So it is such a balancing act with her feeds.  Her swallow study was not done properly (I could write a whole angry post about that!)  It was done by a hospital that had never done an infant swallow study before.  The report to the doctor actually said that the patient was able to swallow the barium tablet with no issues????  A three month old that was scanned while drinking formula???  Anyways, the whole thing was not done properly and a waste of time.  I guess when you walk in and they ask you if you have ever had one done on an infant before and you say yes and they ask you how to do it... you know things are not going to be done right!

None the less, many appointments are going to begin once again, to try to find out what is going on, so we can best help our sweet little girl.  She will be having an MRI soon, as well as being refereed to a neurologist and geneticist.  We already had our Occupational Therapy eval and Physical Therapy eval and she easily qualified for both.  Her speech eval will be in the next few weeks. 

Were these things caused by heavy meth use?  Are they a syndrome?  Are they from a birth injury?  Are they just how she was made?  We may never know... but for right now all I can say is... we all love her so very, very, much.  We will thoroughly enjoy her being here for as long as she remains in foster care.   She is the frosting on the cake of life right now and one of my lifes greatest blessings.  We will be praying fervently over her and I have already seen God working in her little body!  Glory to God!   May her testimony be miraculous!  I can not wait to see it unfold!

May the Lord God in heaven, be with the children of the world, holding them in the palm of His mighty hand, in all they go thru and endure.

Matthew 19:14  But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.

Blessings,

susan