Our lil Heffalump...

 

 

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Enjoying the day...

 

We enjoyed this beautiful day

OUTSIDE!

 

 

My little boy is an outside kid.

He loves it!

 

 

Brookelyn played...hard.

 

 

 

 

 

 

She finally made it to the top!

 

 

 

Our front yard.

Fall is beautiful here in the country.

 

 

It's been a good day!

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Still no answers...

Well yesterday's trip to Emory didn't tell me anything new. I am no closer to knowing anything more than I did the day before yesterday. It's so frustrating. I have worked so hard to help Baby Girl and I feel like they are just running me in circles. I almost wonder if anyone really knows or will ever know what is wrong.

One doctor in Children's diagnosed her with PTS (post traumatic stress) and medicated her for it. The meds made it way worse. It was like throwing gas on a fire(if you can imagine). Then another specialist said it was ODD (Oppositional Defiant Disorder). Then her psychologist diagnosed her with RADD (Reactive Attachment Disorder) with possible autism (which landed us at Marcus). Then Marcus refered us to Emory Neuro Development for possible FAS (Fetal alcohol  syndrome).

Emory striked out every one of the diagnoses the specialists above gave us. We spent the whole day there and saw 6 doctors while we were there. Here is what they said (so far)...

She scored a 5 on the FAS test and she had to score a 10 to be diagnosed with that. So thankfully she DOESN'T have FAS.

 Then they said she was to young for RAD or ODD. Even though she has almost every sign of RADD and does have every single one of the signs of ODD.

Next they striked autism off the list. The reasons why ...

1. She occasionally does show feelings toward others. Most of the time (95% of the time) she shows no feelings of any kind (not to pain or to joy). Most of her feelings are expressed through screaming fits that last from minutes to hours in which you almost never know what she's screaming about, because she won't talk.

 2. She can talk, even though she seldom does. Sometimes she goes weeks without speaking a single word.

 So what do I think? I don't really know what to think. I almost wonder if these doctors even know what they think. Seriously.

I am no closer to knowing today than I did a year ago. I'm frustrated...very ,very, very frustrated. It's been a year of going here and there to get her help.Everyone that meets her knows that it's an extreme case. She is like no other kid that anyone has ever met. What she does here, she does everywhere we go. Every home care nurse has seen it(which is why some have left us), every one of her specialist doctors have seen it, the hospital and staff at Scottish Rite have seen it(even hospitalized her for it), and we live with it every single day. But the question is this.... What is it? It's far from normal.

The problem is this. There is no blood test for the condtions above. Only pamplets with questions you answer about your kid and  the doctor scores and uses that to diagnose. I must have filled out over 20 of those now and some of the pamplets are several pages long. Each came back with one diagnoses or another. But then no two doctors can seem to agree. My question for them was this...
How can a three year old child have ODD, RAD, FAS, PTS, and ASD? Each one of those by itself is huge and life impacting. Their answer was, "They can't" and "She don't". Next question I asked was "Well what do you think she has?". They couldn't answer me. They said they were going to meet with all the other doctors there at Emory Neuro and put their heads together and that I will get a call back with a meeting date within the next month.

Their recommendation for now is to put her in a medically fragile daycare during the day ,start home bound Pre k asap, and seek more therapy for her. Well sir she can't be at both places at the same time. Do you want her in school or in a daycare? Then who is going to cover the special needs daycare bill? I don't think pushing her off on someone is the solution. Why put her in a daycare when she is so medically fragile and weak?  Not to mention the attachment issues. She's a child that can't handle even small changes...not even simple things like moving a toy in her room or changing her bed sheets (It could send her into a panic mode that might last for hours). She won't ever make it in a daycare setting . Also, the closest daycare like that is almost an hour from me. So who is going to transport her both ways (I can't)? She will require nursing during transporting (who will cover that?).

So pray for us, especially her. I just want some answers..



Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Our little cuties...

Our little cuties all dressed up.

Little Miss Addy Grace and Kaylan Bug.

MeMe loves them!

Our little Carter man dressed up as

a dinosaur.

Maw Maw (that's what he calls me)

sure does love him.

Little Bookie Shae

is a pirate this year!

MeMe loves her too!

Pics of the other cuties coming soon!

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

He's Ours!....

 

What an exciting day!!

It's official!!!!

He is our little boy now!!!

Forever and always

and no matter what!!!!

His name is now

officially

Joshua Blaze

and we are really excited about that.

 

 

Our tired little boy.

Court wore him out.

 

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

The legacy of an adopted child...

The Legacy of an Adopted Child

 

 Once there were two women
Who never knew each other.
One you do not remember
The other you call Mother.

Two different lives
Shaped to make you one.
One became your guiding star
The other became your sun.

The first one gave you life
And the second taught you to live it.
The first gave you a need for love
The second was there to give it.

One gave you a nationality
The other gave you a name.
One gave you a talent
The other gave you aim.

One gave you emotions
The other calmed your fears.
One saw your first sweet smile
The other dried your tears.

One sought for you a home
That she could not provide.
The other prayed for a child
And her hope was not denied.

And now you ask me through your tears
The age old question unanswered through the years.
Heredity or environment
Which are you a product of?
Neither my Darling, neither.
Just two different kinds of Love.

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Only hours away...

We are so close now. Only hours away from our big day! We've gone through a lot to get to this day. In just a few hours our baby will be ours forever. No more DFCS visits. No more telling us what we can and can't do. No more worrying about who may come forward to take him from us. He will be ours. Yes, you read that right. He will be ours. Our son. He will have our last name and we will finally be able to move forward as a family.

I can't really describe how I feel tonight. My heart is so full. Full of joy, full of love, full of thanks. I'm excited. I'm anxious. I probably won't sleep at all tonight. I feel like a little kid at Christmas time. I just want to hold my little boy and kiss him and praise God for him. Yes, my cup is running over. We've waited a long time for this and the wait is almost over.

Our baby was worth the wait!

 

 
Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

My babies...

 

All three are doing great!!!

Joshua Blaze has forgiven me for the torture

he had to go through at the hospital last week

and his head is healing nicely.

No results from his tests yet.

 

Bry is having a pretty good

week, so far.

We took her and Joshua to Atlanta

yesterday to see their GI doctor.

He was pleased at how well her

tummy is doing.

She had a fundo wrap done a few

weeks ago and it has stopped the

frequent vomiting we were having.

So hopefully she will start

packing the weight on now.

He increased her feeds

from 2 nutrens to 3 because

she is still under weight.

Yesterday, she was 26 lbs 2 ozs,

Blazey weighed 24 lbs 10 oz,

so he is catching up to her

and will probably pass her

by the  end of the year.

She's only three inches

 taller than him.

 

The GI thinks it may be possible that Joshua's

feeding problems are mostly sensory related,

but he still wants to do an upper

GI to look at his tummy

because he is having such

 a hard time eating

and keeping down food.

 

It seems every appointment

leads to another appointment

with these two.

 

Our chunky monkey..."The Baby"

is doing great!

He may out grow Bry and Joshua.

He already out eats them both.

At last weigh in he was

17 lbs and 5 ozs (2 weeks ago)

but I'm sure he's probably 18 + now

(at 5 months old).

He's going to be a football player

when he grows up...lol

 

 

I'm tired of all

of these appointments.

It's almost overwhelming

just keeping up with them all.

 

 Bry has 3 therapies weekly now (1-OT and 2-PT)

with two more (OT and PT) about

 to be added by the BOE

plus her psych wants us to start play therapy.

I don't know how we are going to

squeeze those in

to my already complicated schedule.

 

Joshua has three

therapies weekly himself  (Ot, PT, and  Speech)

and he has a weekly sign language class.

 

Yes, I am one very busy mom

with one really messy calendar.

 

 

Well that's my baby update for today.

Please keep them in your prayers.

 

 

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Nobody Cares...

Recently, I was reading one of my favorite blogger's post. She  posted a "Nobody Cares" post that really spoke to me. It made me think and question why I even blog and share the things I do.  I know that most likely nobody really cares about the things I share. After all, I'm not a good writer. I'm lucky if I even use the right there, their, or they're. Just being honest here. I may not type perfect or use the best words. Trust me I realize that. I stink at english. You won't find fancy writing here. I'm just a simple minded person. A women of few words some may say. I'm the least among you in the blog world. When someone visits my blog and actually comes back to visit again, I'm always amazed. I often wonder why. Seriously I do.

 So why do I bother?
 When Nobody really Cares.
Nobody cares what I did today except for maybe my hubby and kids (But they seldom read my blog so it doesn't really matter). Nobody cares if I'm having a good day or if things are not so great. If I'm feeling tired, overly happy, or even sad. If it's sunny here or pouring down rain. If I've been up all night with a teething baby or read the same bedtime story three times in a row. Nobody cares if my kid had a meltdown in the middle of the store, that I misplaced my keys, and that it caused me to be late for my appointment. Nobody cares that the lady in front of me at walmart irritated me or about what I cooked or ate today (or even the picture of my plate that I posted). Nobody cares what song I listened to on youtube or what my new favorite movie is this week. Nobody cares that my kid only eats one food at a time (and that it has to be the white stuff first, then the greens, and then the orange) or how he threw it in the floor instead of eating it at all. No one cares how we celebrated a birthday, or that my favorite team won this week. Nobody cares that my kid pooped in the potty today, is now in the 50th percentile, made perfect A's on their report card, learned to ride a bike, wrote their abc's for the first time, or that we had an awesome play date with our neighbors. Nobody cares where we spent our day today, where we got their cute shirts, about our favorite new store, or about that cool new gadget we recently bought. Nobody really cares about all that stuff or maybe they do.

So why blog about it?

 I blog for me. I write for me. It's my get away when I have some free "me" time. I read my own blog. I go back through different posts to remind myself where I was and where I am in hopes that I've grown, learned, matured.  I really just blog for myself and for no other reason, but If by chance someone stumbles upon my blog and stays long enough to read my boring stuff and actually enjoys it, then that's great. Maybe somehow something I say or do will mean something to someone along the way and that would make me happy, but if not then that's alright too.

I blog because I like to blog. This in my blog and I write about my life as it happens and about the things and people that matter the most to me.

 
Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

Look who's nine!!!!...

It's true!!!!

Our punkin is

9 now!!!!!

9 months old!!!!

Happy nine months 

Kaylan Bug!

Paw Paw and MeMe

love you soooo much.

 Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6

It Was Me- Michael Combs

It was Me

(chorus)
 Who do you think hung the stars in the sky?

Who do you think made the day and the night?
Who made the flowers?
Who made the trees?
Who made the sun and the moon and the seas?
Who gives life to all who believe?
Who do you think made the blind to see?
Who made the very air that you breathe?
Who defeated death and won the victory?
It was Me (it was Me)
It was Me (It was Me)
I'm the One that died for you at Calvary
It was Me
Who loved you when no one else would?
Who saved you when no one else could?
It was Me

 

Love this song.

Saturdays are the best...

The whole time he was in the hospital he

kept picking at his head.

Now I know why.

It blistered his head.

 

I felt like the worse mom

 ever when they

took the dressing off
because I kept signing "no no"
every time he tried to pull it off.

 

 

But we are home now and he is

doing much better.

We actually enjoyed some outside play

time today.

Bay's here for the weekend!
I love this girl.
She is Aunt Sandy's baby girl
forever and always
and nomatter what.

 

Walking with my sweet babies.

I love our walks.

 

Once again this year we did

The Pumpkin Prayer

 

Dear God,
As I carve my pumpkin help me say this prayer:

Open my mind so I can learn about You;
(Cut the top of the pumpkin)

Take away all my sin and forgive

 me for the wrong things I do.
(Clean out the inside)

 Open my eyes so Your love I will see;
(Cut the eyes out in heart shapes)

 I'm so sorry for turning up my

 nose to all you've given me.
(Cut a nose in the shape of a cross)

 

 

 Open my ears so your

 word I will hear.

(Cut the ears shaped like the Bible)

 

 Open my mouth so I can

 tell others You're near
(cut the mouth in the shape of a fish)

 

 Let Your light shine in all

I say and do!
In Jesus name I pray.
Amen.
(Place a candle inside and light it up)

 

My little helpers

 

I love my Kaylan Bug.

She is MeMe's sweetheart.

 

Our sweet Adalyn.

We don't get to see her nearly enough,

so when Katie called and said they

were coming, we all got excited!

 

 

 

Say cheese for MeMe:)

 

My baby pumpkin

 

 

He loved the light.

He recently learned to sign "light"

and I think that's his favorite sign now.

 

The sweetest sisters ever!

 

Hubs built a fire.

 

It's getting cold out here.

Bry came out and joined us by the fire.

 

We watched It's

  The Great Pumpkin Charlie Brown

 

I've really enjoyed this Saturday with the kids:)

Trust in the LORD with all thine heart;and lean not unto thine own understanding. In all thy ways acknowledge him,and he will direct thy paths. ~Proverbs 3:5-6