Early intervention was an eye opening experience....without Kay Sprayberry, who knows where we would be today. She helped us more than any doctor ever wanted or tried to. She set up appointments with other doctors, physical therapists, occupational therapists and speech therapists, helped us get bailey on SSI. She was a true blessing.

During this time, the neurologist finally decided that because she had an abnormal eeg, he would put her on an epilepsy drug...topamax, eventhough he said she didn't have epilepsy...idk why.

At home therapy began and let me tell you, Bailey hated every single minute of it. She didn't like to be touched, so physical therapy was just horrid. Not much got accomplished by those early intervention days, but I really learned a lot about PDD and how to care for Bailey.

During this time, Bailey had been having those strange twitching sessions and a 'zoning out' of sorts. She really wasn't progressing any. She was doing that 'wounded soldier' crawl, if you can even use the word crawl to describe it.

In February of 2003 (Bailey was 18 months old) we were in choir practice after the PM worship service. Bailey had not been feeling well. A church member came to me and said that Bailey had thrown up. I got to her and once again, she was limp as could be. She was barely breathing again. The foamy throw up was not like normal throw up. (such yummy conversations I have with you all!) It was slimy and mucousy, it was like froth. We are sure she injested some of it. So, off to the ER again. This seizure was a bad one. No matter how much medicine they gave her, it just wouldn't stop. Medicine that would normally knock out an adult wasn't even phasing her. She was flopping around uncontrollably on the table. Yet, when you looked into her eyes, there was an emptiness an absence. Eventually, though, the seizure subsided and she was resting. Tests were done and they realized that she had a reaction to the topamax....you know those side effects that they list off...may cause this, this, this, this, and death! hehehe, those crack me up. Well, you outta know Bailey was one of the rare ones to have this side effect. So into the hospital she went for a few more days.

ok, figured it out! sorry to be such a bother!

Bailey Stimming

ok, i added the youtube widget to display video of bailey....and only bailey....for some reason, other videos keep popping up on there.   please know that i didnt do it.  i am trying to fix it.  anyway, unless you see a video of her, dont click on it cuz who knows what kind of video it may be!  please be patient while i try to fix it!

lets see....been trying to gather my thoughts and trigger my memory to post the next story in my timeline. 

At this point, we were seeing which ever doctor was on call at the time (of her hospitalization, that is)  Along came Dr. Tyler....and his series of monotonous questions.  When he finished, he asked, "And what are you doing about all of her delays?"  I am sure that my face was pale because I was thinking, "doing? we haven't done anything!"  I told him what her primary pediatrician had explained to us...which was not to worry and let her develop at her own pace.  Well, he surely didn't agree with that!  He immediately told me that he wanted her to see a neurologist and would set up that appointment for me. 

We went to the neurologist for a Video EEG....not easy as it sounds.  Bailey DOES NOT...do you hear me?  DOES NOT like for her head to messed with.  She fought tooth and nail while all of those jabillion electrodes were put on her head.  Then it was time to give her some sleepy medicine.  Yeah, right.  So much for that....apparently Miss Bailey has a high tolerance for medicine.  Lucky us!  After an hour and a half of trying to get her to not snatch every wire off her head and get her to sleep for more than 5 minutes at a time, we finally got her to remain calm enough to get all of the info the doctor needed.

Result?  Abnormal EEG, but not epilepsy.  He said she had PDD....Pervasive Developmental Disorder.  What in that world was that?  I didn't know, they surely didn't elaborate.  Just ever so nonchalant about it, like, "ok, your daughter isn't quite right.....bye-bye now"  No one offered to explain things to me, no one chose to help me  understand what to do for her. 

I do not remember how, but I was introduced to a lady who got me started in early intervention....which is where we will begin next time!

In October of 2002, I was on the phone with a friend.  Bailey was down for a nap in her bedroom.  Shelby Grace was nearly 4 by now.  She was at that 'dress up' stage....unfortunately.  She loved to get dresses from the thrift store.  She would only wear the ones that were flowy at the bottom...and called them spin dresses.  This was one day that she was wearing one of them....and it was the most hideous looking thing.  I remember she looked like Half Pint after a schoolyard brawl!  I must also say that I wasn't exactly dressed to kill, either.  I had on one of those worn out, bleached out, tattered knit skirts and an old shirt (cleaning day, after all) and I can't remember, but I am sure my hair was in a pony tail!

Anyway, she comes to me while I am talking and says that Bailey has thrown up.  Well, I just figured she had spit up a bit, no biggy.  So I ended my conversation and casually walked into the bedroom.  There I found my 14 month old face down in vomit.  Motionless....lifeless....limp.  I didn't know what to do.  I just scooped her into my arms and ran over to the church (which was only about 15 ft from our front door) where Michael was studying.  "Is this normal?" was the question I asked as I nearly broke down his door.  I know, what kind of question was that?  Of course it's not 'normal.'  To this day, we still laugh about me asking such a question. 

Michael, being an EMT, took her and cleaned her airway.  She was breathing, but barely.  We scurried to the van and off to the ER we went.  No need to call 911, we were out in the boonies, just as fast or faster to take her ourselves.  So off we go, Michael who is dressed appropriately; me, looking like raggidy ann; shelby looking like a bad half pint impersonation!  Let me say, those hospitals sure do part the red seas when you bring in a lifeless child in your arms.             

 A series of tests was ordered.  Spinal tap, mri, cat scan, various blood tests.  We were asked 9,264 questions about everything under the moon.  My mind was in a fog.  Finally, the doctor concluded that she must have had a febrile seizure and that she would be fine.  Bailey had pheumonia so she was admitted for treatment.  We were assured that this probably wouldn't happen again.  We were relieved to hear that.  What drama!

Year one was so trying for us as a family and for me personally.  Because she never slept, I had to hold her for the couple of hours she would drift off.  Most nights were spent in the living room on the couch.  I would have to sit perfectly still.  No change in my breathing could take place, no scratching itches, no yawning, no sneezing...all of this would wake her and we would start all over.  I didn't sleep in my own bed any of that year, and for the majority of the next two years. 

Eventually, we did decide that she would just have to 'cry it out'....yeah, right.  She would scream bloody murder for several hours which kept the entire house up.  So there were times when she would doze off and I would slide into bed with Michael....only to be awakened by her piercing scream again within 20 minutes.  It just wasn't worth it to let her scream another three hours and make everyone else in the house suffer, so off to the living room we would go again.

Everyday was the same old thing.  Bailey was helpless, even at one.  She didn't play with toys, she didn't play with anything except a remote control and an old cell phone.  Once she could sit up unattended, she would just sit there and rock back and forth.....there, but not there.  Daytime wasn't so bad since she really couldn't 'do' anything...But those night hours took their toll on me.

I wish that I could say that these were times that I would pray and seek comfort in the Lord, but I didn't.  Although I never showed it, bitterness and anger was building inside of me.  I was tired, I was spent, I felt alone, I felt like my rope was unwinding and that I was dangling on one of its threads.  My heart was beginning to get hard....and it would only get worse.

I must also mention this fact:  Bailey never slept.  I'm not exagerating, I'm not stretching the truth at all when I say that if she slept 2 hours a day, we were doing the hallelujah dance!  We couldn't figure it out.  I would stay up with her all night.  I probably looked like someone from Night of the Living Dead....at best.  She would just scream all the time.  Seriously, like not whine or wimper or cry, but absolutely scream!  Like she was on fire or something.  No matter how much I rocked, paced, patted, fed, changed, talked, swayed, sang, prayed, bounce, swaddle, there was no relief.  This was NOT colic.  These screams were coming from somewhere else...and I was unable to find that source.

I'm telling you, that first year was a bit of a haze as I look back on it.  But I do know that Michael and I knew that something just wasn't quite right.  But, hey, the pediatrician said not to worry, so who were we to worry, right?!  Geez, if only I would have listened to that still small voice.  There are times that even now I kick myself in the butt for not acting on those feelings. 

She also had a hard time poopin....won't go into major detail about that!  But had to use Miralax (b/f it was available OTC)  That eventually got better.  Let's see, she also had a bad case of eczema....that too has passed.  We always had the hardest time making her smile.  She would just stare at you....and I do mean stare!  No emotion, no expression.  Once she could sit up, we noticed that she would kind of twitch or seem to be falling over, then catch herself....But once again, I chalked this up to the fact that she was delayed and that she was just unbalanced....no big deal....or so I thought.

I will stop here.  This is basically a brief one year synopsis.  It was much like tending to a newborn for 12 months, literally; maybe even worse...lack of sleep really got to me!

So, of course we were so proud to have lil Bailey home with us.  Shelby immediately took charge as Big Sister.  We began to see a pattern as we would take her for her well baby visits.  Each visit we would be asked about certain things:  3 months- does she ooo & ahhh?  does she laugh/smile?  does she reach for objects? does she roll over?  NO TO ALL OF THE ABOVE.  6 months-  does she sit up?  does she roll from side to side?  does she mimic facial expressions?  does she crawl?  NO TO ALL OF THE ABOVE.  9 months-  does she stand while holding something?  does she pull up to standing position?  does she wave good-bye?  does she say 'mama' & 'dada'?  NO TO ALL OF THE ABOVE.  12 months-  does she walk?  say other words than 'mama' & 'dada'?  does she understand simple instructions?  NO TO ALL OF THE ABOVE.

Notice the pattern?  Yep, she didn't hit ANY of them.  Looking back now, I just want to hit myself for not being more proactive....which would have lead to earlier intervention....which would have probably kept her from being as delayed as she is today.  Anyway, I would ask her pediatrician about it.  He would act as though nothing was wrong.  He explained to me that some children just develop at their own time, not to worry.  So I trusted him. 

What & when milestones were hit?  Well, she sat up around 9 months.  She never crawled, instead she did this weird 'wounded soldier' thing where she would drag her body across the floor.  She began this around 12 months.  Let's see, she walked......at 3 years old, with the help of AFOs (leg braces...which is another story.  her legs are turned.  low muscle tone.  flat foot.  very stiff)

When she started walking she couldn't just stand stationary...she had to always be marking time.  And she would stick her fingers in her ears or have them above her head for balance.  When I say she started walking, I do not mean walking like even the normal toddler.  She was extremely unstable, very wobbly.

Bailey Dyan Wiggins

Born Thursday, 11:35PM, August 31, 2001

4lbs. 4oz.

16 1/2 in. long

So this is where it all began.  Bailey was born at 32 weeks gestation...although this was not my first premature delivery.  Shelby, our now 11 year old, was born at 33 weeks and weighed less than Bailey.  As with most preemies, Bailey was sent immediately to the NICU.  That would be her home for the next 23 days, which felt more like 23 weeks to this mom who had to travel 1 1/2 hours to see her (one way) every day.

Shelby was 2 1/2 at the time.  She was so terribly excited to have a little sister!  We were living in Equality, AL where Michael (my husband) was a pastor at New Life Baptist Church.  We were happy to be growing our family.

Bailey's stay ended and we were finally able to go home and have a go at normality again.  The first few weeks of her life was quite normal...the usual newborn job.....sleep, eat, poop.  But little did I know that the next year would be so trying, confusing, and frustrating!

As I have said, I want this blog to lift up the name of Christ and give Him glory for the wonderful blessings in my life...but I will also admit right now, that for the first 3 years of Bailey's life, I failed miserably at this.  I will record all of that.  My mess ups, my bitterness, then switch gears to my repentance, my deliverance, and my thankfulness!

My Reason For Blogging

I enjoy journaling.  It's that simple.  And for some reason I have been thinking about beginning a blog about my daughter, Bailey.  She is a special needs child.  I want to tell her story.  I want to take all of my friends and family back to where it all began....from the very beginning.  A story should have a purpose, and I feel that this one does...to inform, to encourage, and most of all to glorify my Savior, Jesus Christ.

I ask that you follow along as I take what will probably be quite an emotional journey into the past 8 years of my life.  I hope to not bore you.  And even if no one ever takes one look at this blog, I will know in my heart that I have done my best to honor Christ through the life of my child!

So, let the blogging begin!