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Friday, January 17, 2014

Journey with Josiah {7}

The last update that I gave on Josiah was when he turned four back in August.  You can read all of my previous updates by clicking on the link below:

Journey with Josiah {1}
Journey with Josiah {2}
Journey with Josiah {3}
Journey with Josiah {4}
Journey with Josiah {5}
Journey with Josiah {6}
Josiah {4 years old}

In my last update on Josiah when he turned four (in case you didn't read the links above), we had just had his ears checked and everything looked good from what they could see.  Since then, he had another ear appointment in December, and they still couldn't find anything.  So we have pretty much ruled out Josiah's ears being the issue with his lack of verbal skills.  Still, we will continue to have his hearing tested periodically because with the tests that they run, the results aren't always conclusive with a child lacking in speech.  So pretty much, we aren't going to get conclusive results until he starts talking more.

In my last update we were getting ready to have Josiah evaluated by a child psychiatrist. That was a frustrating experience.  Not the actual evaluation itself, but just the time it took to get him finally evaluated.  We couldn't find anyone here that would test for autism before the age of four.  Once, he turned four, his pediatrician sent in his referral to a child psychiatrist here in Lawton.  That doctor canceled on us twice without letting us know until we made it to the actual appointment.  I may or may not  have exchanged words with the receptionist that second time around. I may have said the words "not ever coming back" and "unprofessional" and "taking my child somewhere else." I had to eat these words later on.  I phoned Josiah's pediatrician's assistant about the issue so she then sent a referral to the hospital.  We were trying to avoid this route because she said that it takes forever to get in.  She was right.  It took forever to get the referral to go through.  Actually, it never did.  We are still waiting on that phone call to set up an appointment.  So in my lack of patience, I phoned his PA once again, and she insisted that we give the child psychiatrist another chance.  Like I said, I had to eat my words and schedule another appointment.  Third times a charm, right? Thankfully, our appointment was upheld and we were able to get a diagnosis: PDD (pervasive development disorder), which is now considered on the spectrum as high functioning autism.  This really didn't come as a surprise to us.  Whereas before, we had been in denial, over the past year the Lord had really been revealing to us that Josiah probably did have autism.  We just needed an official diagnosis to be able to get a referral for therapy.  The psychiatrist also diagnosed Josiah with ADHD.   He prescribed Josiah a medicine for this, which we did not have filled.  (that is a post for another time). After getting his diagnosis we made an appointment with his PA who then made the referral for his occupational therapy.  She also put in an order for lab work to have urine, blood, and stool test ran, as well as allergy testing.

 That was back in October.  Present Day: January 17th and we still haven't been able to get his referral to go through due to a lack of communication between his PA, our insurance and the center that we have chosen for his therapy. All of this despite my persistant pushing.  It is beyond frustrating.  Early intervention is key right? Well too bad I can't get some early intervention!

The same day that we received Josiah's diagnosis, we traveled to Mount Enterprise to visit. While there we took Josiah to see an occupational therapist that my sister in law once worked for. She was incredible.  I wish she were here in Lawton.  Thankfully she showed us a lot of things we could do for Josiah until his therapy here got started. I am happy to say that her advice and tips have really helped. Josiah is starting to string a few words together and seems to be comprehending more. He has also been much more calm and not as hyper. His sensory issues have improved a bit too.

I also give a lot of credit for his improvement to the small changes that we have made in his diet. We have completely cut out juice and we are limiting his carb/gluten intake. If you read my previous posts on Josiah, then you know that we went the gluten/dairy free route before.  The reason being is that most autistic children have a "leaky gut" disorder.  They are unable to digest the protein in gluten and sometimes dairy properly. They develop an overgrowth of yeast "candida" in their gut. Undigested proteins begin to leak into their bloodstream and wreak havoc in their brain. This combined with brain inflammation and heavy toxins from vaccines act as a double edged sword. Other food allergies play into all of this as well.  So we decided to give this diet a try again.  We are taking it much slower this time.  Last time, we went cold turkey.  And Josiah, who is an EXTREMELY picky eater, refused to eat anything for days until I threw in the towel and decided that it wasn't worth it.  However, here we are two years later and the market for gluten free products has blown up.  It's been easier this time around and we are making little changes to his diet every few days.  It's hard but the improvements that we are seeing make it worth it.

So right now we are waiting to get his therapy started. I will be making another call about it today.  And next week we will take him to have his lab work run to see if he has any other food allergies.  Can I ask for your prayer concerning all of this? Getting Josiah the help he needs has been an incredibly slow and frustrating process. But I'm determined that as long as I have breath, I will fight for my child.  Unfortunately, it brings out the nasty in me sometimes..  So please bathe us in prayer!

Monday, January 6, 2014

Addy Jo {4 Months} {in memory of DeDe}

My sweet baby girl,

You turned 4 months old this past week.  It has been 125 days since we first laid eyes on you and 365 days since we announced to the world that you were growing inside of me.  Yep, exactly one year has gone by since we first learned about our little New Year's surprise.  When that extra line showed up on that little stick, I cried tears of joy and utter surprise.  I'll be honest, right before we found out about you, we had been passing the idea around of not having anymore babies.  I am so glad that God knows what is better for us than we do.  It seriously makes me sad to imagine life without you.  God showed us so much favor by making us your parents Addison.  It has also brought us great joy watching your two big brothers fall in love with you.  At ages 4.5 and almost 3, Josiah and Elijah are absolutely enamored with you.  I swear my heart grows every time they gently kiss all over you.  I think you eat it up already too.

This past month was huge for you.  The biggest milestone you reached was rolling over.  You have also really fallen in love with your hands this past month.  You take a pacifier when you go to sleep, but we can always expect a hand (sometimes two) in your mouth while you are awake.  You're still nursing great every 2.5-3 hours. You weighed 13 pounds and 4 ounces last week and are as healthy as can be. At this point, your brothers had you beat by a few pounds.  Even at only 4 months, I am constantly blown away by the difference in little boys and little girls.  To be able to experience both worlds has been such a blessing.

Addy Jo, one thing you need to know about your momma is this: I want to protect you from everything.  And right now, you need me to.  But I know there will be a day when I have to back off.  That is a scary thought in today's world.  It's not just the physical and disturbing news that I hear and see that scares me for you.  It's knowing that whatever I went through as a girl AND a woman, you will probably go through 10X over.  This cruel world is going to tell you that you're not pretty enough, smart enough, thin enough, and the list goes on.  And I'm going to combat it with this truth:

 "For you formed my inward parts;
you knitted me together in my mother’s womb.
 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them." (Psalm 139:13-16)

Addison, it is my prayer that you write this on your heart....that God and His truth will be your shield against the evils of this world.  You are fearfully and wonderfully made...What kind of world would this be if everyone believed those words about themselves? There is a confidence that comes from knowing this that is unlike any "good feelings" that you will feel from any compliment that you receive.  And when the compliments don't come, because sometimes they don't baby girl, this truth is all you need....You are fearfully and wonderfully made...when everyone and everything fails you, Jesus remains constant...As your momma, I wish you all the joys that one life can bring.  But even if this world fails you in every way possible, know this: Jesus never will.

You are fearfully and wonderfully made....

I love you sweet girl.



P.S....the jewelry in the pictures below belonged to DeDe. She loved all things vintage and antique like and it's bittersweet to see you wrapped up in her pretty things.  She would have ate you up.  We are coming up on 4 years since the Lord called her home.  DeDe is one of my greatest examples of a woman who loved God with everything she had.  Even when cancer kept taking over her body and this world ultimately failed her, she still clung to the promise that she was fearfully and wonderfully made. She truly clung to Jesus. What a wonderful testimony she was to all who knew her.  I pray that her testimony to God's love and grace lives on.  She has been one of the biggest role models for me and I pray that I will pass her legacy and testimony on through you Addison.

In honor of Dede:

Wednesday, January 1, 2014

December Phone Dump {2013}

December was full of celebrating...mine and Jordan's birthdays, Jordan's graduation, and ultimately: Jesus' birthday.  It was a great month! Excited for what's in store this new year! But first, a review of December: