September 26, 2010

Just Another Update...

So I must explain my absence from writing.

We have been dealing with alot more than usual lately.
The stress levels have been so high.

So here it goes.
The big explanation.
Be prepared for a bunch of whining. 

It all started this Summer when Nick's Job got changed & he had to go through training.
The training & the times got moved all the time.
We lost a lot of money due to the nature of Nick's training shifts & the boys barely saw him during the daylight hours.
These past few months have been awful & I am so ready & thankful for Fall.
Fall brings Nick working, x3 nights  & 1 overtime shift somewhere a week.
This brings more money into the house.
we have yet to see it, but it's coming next week!

This summer also brought 3-4 Dr. Apps a week. 
This is more than we had ever had before.
I was an physical & emotional wreck after each day.
Carter had his surgery & we had hoped that his eating would improve.
Unfortunately, it has gotten worse.
Carter will be going for the same feeding study Mason has had several times.
Carter has been on thickened fluids for quite some time now & has been refusing his un-thickened bottles.
All of this doesn't mean that Carter has the same swallowing problems, but he does have very extreme Reflux that can trigger a child to not eat.
I know, again.
The OT & Mason's Infant Development Worker have been concerned that we are in denial.
Secretly, we have been.
I just thought things would get better. 
Carter has lost weight, but he has now gained some back.
So it's time I talk about it.
~this is one of the reason's I haven't been blogging.

For more news....
If you have read my past posts you know that we went to Genetics.
They think it's quite probable that Mason has, "Smith-Magenis Syndrome".
The wait was going to be around 3-4 weeks,
then 6-8 weeks.
We are now in week 8, stuck wondering what is taking so long.
Ugg.

Mason being older now is going through another Testing period for Autism.
It is believed by many of Mason's professionals, he will fit the spectrum of Autism under the new criteria that will be in place in 2012. 

We have started the testing again, alot of the Specialists are using the new criteria already.
This past week Mason saw the Speech Pathologist, who is 1 of 3 who has to agree on the Autism Spectrum Diagnose.
For her part (speech) Mason fits the Spectrum.
So part 1 down, 2 to go.
It is not a question after having all Mason's Documents reviewed that Mason has Autism. 
He does.
We have sort of come to terms with it, but I don't think it will "hit home" until we have the diagnose in our hands.
We are thankful that he will fit in the High Functioning categories of Autism.

We are so curious to find out the results of "Smith-Magenis Syndrome", a diagnose of high functioning Autism is seemingly common. 

Josh has started school & is really enjoying it! 
Full time kindergarten starts tomrw & we are all looking forward to it.
Josh really struggled for the last month out of school, he wanted to go back.
So I am happy that he is happy.
When I think about it, I am kinda sad that for the next 13 years he won't be home during the weekdays.

Josh also had his own Dr. Apps this summer. 
He has formally been Diagnosed with ADHD & Asthma.
He is on new treatment for his Asthma & we have changed his diet quite a bit.
All in all Josh is doing really well!

The house has been alot of keeping up with & well we haven't been keeping up.
Our LandLords hasn't liked the amount of times the grass has been left uncut.
They are threatening to raise our rent.
We cannot afford anymore rent.
We are already taking Money of our Line of Credit every month to continue living, there isn't much line left.
I do not want to up root the kids again next year.
I know it's in God's hands, but we are just struggling not to stress about it.
On further note, now that Nick is back to regular schedule, our life is getting back to our "normal".
I maybe slightly OCD about things sometimes, so it's good that the house is getting back to it's regular.
 It is some anxiety of my back.

I have also spent the Summer taking courses.
~I know as if I didn't have enough to worry about.
 I have just opened a small business Designing Blogs.
Please send out the word that if anyone would like a Custom Blog, I'm there woman!
I am dedicating one day a week to it right now, and soon I will be doing it two.
At least we are hoping!

After all this Summer & not leaving the boys for three years...
Nick & I took off this week to Harrison Hot Springs for one night & then one night at home without them.
I did miss them & it seemed way to quiet.
But we got eat, sleep & reorganize the house without any interuptions.
It was great.
I think we both really needed the break.

Hopefully we will have some answers soon about the boys.
Let you know when we know.
~this seems to be my new catch phrase.

5 comments:

  1. Wow! You really have been going through sooooo much! I am sorry it has been a heavy time for you. I am glad I saw you on Twitter or I wouldn't have seen this post. I am actually a Speech Pathologist, too. I work with both adults & children on a part-time basis. I work in a hospital and in the school system. For our local school district, I just complete testing for various schools. I am looking forward to keeping up with your blog. I have a 2 y/o boy who I suspect may have reflux. We are getting him checked out more in the next couple of weeks. I hope it is not more serious than that... Thanks for sharing your story with us!

    ReplyDelete
  2. So much going on!! I'm your newest follower...I just read Mason's story, and he is SO CUTE! It sounds like it's been quite a journey so far. My Hanna has doctors puzzled everywhere, so I'm familiar with what you're dealing with. We've been seeing genetics for about a year, and they still dont have a diagnosis for her.
    Anyhow, you can read Hanna's story on my blog if you want.
    http://jennohara-theblindspot.blogspot.com
    Looking forward to getting to know you :)

    ReplyDelete
  3. I am new to your blog but wanted to comment. I am glad that things are getting back to normal for you now. I know how hard it can be when your husband's hours at work are crazy. Hopefully things will continue to smooth out for you!
    My daughter was tested for SM and I thought for sure she had it, but it was negative. My daughter is 8 and has been tested for so many things but it has all been negative. It was discovered in '08 that she has a chromosome duplication. Hopefully you will get your resulsts soon!
    I am now going to read Mason' story and more of your blog.
    Take care, Debbi

    ReplyDelete
  4. Kelly- I am glad we met on twitter! Are you using the new Criteria from the DSM in your assessments? I hope your son doesn't have anything wrong with him. But Reflux is the best outcome if something is wrong. Let me know how it goes.

    Jenn- Thanks for following! I don't like that you have been seeing Genetics for a year and still have no answers. I am about to go read your Blog! Thanks for your comments.

    Debbi, Thank you for reading! I am glad you have discovered the deletion. Going to go Google to more about it! I hope to get back to you soon with some kind of results.

    Going to read more about all of you & am really thankful for all your comments.

    Dana

    ReplyDelete
  5. Oh honey. My little problems seem so petty after reading all the stresses and problems you have right now. ((hugs))

    It WILL get better. You are so strong - God doesn't give us more than we can handle and he must feel like you can carry a very heavy load right now.

    I will be keeping you and your boys in my thoughts and prayers.

    ReplyDelete