Tuesday, June 14, 2011

A Journey Of A Thousand Miles...

...begins with a single step.

The appointment with Avery's doctor went well today. I quietly explained to the nurse that I wanted to speak with the doctor privately, at first. So she made sure Avery was settled with a movie and I was in a room close to her.

Her doctor started by asking about her lungs and how she has been doing coping with allergy season. He knows her history and this is always his first concern, with her. Then, he asked me what has been going on.

So...I started to cry...

...then, I apologized for the word vomit about to spew out of my mouth...

..and then I laid it all out. All of it. He wrote a lot down, but asked very few questions. Probably because I didn't give him much of a chance...I was talking a mile a minute.

In the end, he said that it is known that preemie births/traumatic births can cause issues later in life. Perhaps this is playing a role. In addition, the stress her body endured during the RSV ordeal could also be playing a part, because of her being on oxygen for so long. He said, honestly, there is no way to know for sure. However, it made me feel better that my suspicions were somewhat validated, before I even voiced that I suspected that these events could have had an impact on her.

He said that there is some obvious frontal lobe immaturity. She lacks the ability to discern right from wrong, as quickly as she should. He said that there is also some emotional development issues, something that you would typically see resolving around 18 months to 2 years of age. As a result, he has referred us to The Children's Center, which is staffed with psychologists and clinical social workers. They will be able to properly evaluate and diagnose her and provide a treatment plan.

I don't know what this will entail and to be honest, I'm completely overwhelmed. I know that I just need to calm down and take it one step at a time, but staring down what may be a long road, is scary. The center only provides care to children ages 0-7, so I'm also left wondering what happens in a year and a half, if we still need help? After establishing a relationship with a therapist, will we be forced to start all over, with a new one?

So many questions, but all I know is this: no matter what it takes, I will do it.


Nannette said...

Hugs. Hugs. Hugs. The road you are staring down will have many twists and turns, but you will be there with Avery each step which is saying SO much. The unknown is so scary, but you have started the journey. Hugs. Hugs. Hugs!

Kerri doyle said...

Leeann, you are a strong person and will get through this. And where therapy ends that is when you and Josh come in. You two will be her best listeners and will be the closest to her to help her through. You guys know her better than any therapist would be able to cause you are there for not because of money but because you love her. Good luck to you guys and your long journey. I love you all!!!!

Mom said...

You know I'm here if you need any help. I believe that that goes without saying. All you have to do is ask. Love all of you tons!

Common Mom said...

Thinking of you!!!

Whitney said...

I'm so glad that you are on the road to help. Please let me know if I can do anything. Miss you.

Mike and Jen said...

I am glad it went well, and you guys are still in my thoughts and prayers! You are so strong Leeann. You amaze me! Love you!
PS- I left a little something for you on my blog:) Lol!

Traci J. said...

Everything sounds very positive! Small baby steps make huge rewards in the long run, even if there is small setbacks it is just like any other journey in life, you gotta "keep on keepin on" :) Good Luck to you, Avery, and the rest of the family!

Steph said...

((HUGS)) Our 8 year old has Aspergers and our 8 month old has Epilepsy, developmental delays, a possible genetic disorder and other issues. That road looks long and scary when you start out, but as you walk it and get more information and gain more knowledge it becomes a bit easier.

Some tips:
-create a sensory bag: earmuffs/plugs, sunglasses, a big floppy hat and peppermints or a gum/candy she likes. Carry it EVERYWHERE. If lights are too bright-sunglasses, if it's too noisy-earplugs. You get the idea.

-Even if you give her her own room, create a "hiding place". Put a bean bag in her closet, or make a house out of a cardboard box. Somewhere she can go when it's too much and it will let the other kids know that too (this helps our littles so much, we just said "when sissy is in that spot, we leave her alone".

-Ikea makes a swing that's great and not expensive. Might be a worthy investment.

-remember how swaddling helped settle an infant? Works for a bigger child with sensory issues too.

-Change all of your bulbs to 40 or 60 watts and then put lamps in places where you need brighter light.

While you're waiting on Childrens therapists, you could ask for a referral to an OT that does Sensory Integration Therapy. It's done wonders.

You might know all this already, just wanted to offer things that we learned the hard way.