Tuesday, July 31, 2012

Pictures !!! Play Ball!!!

We went to the baseball game on Saturday night.
Did you know the Astros offer $1.00 - yes ONE dollar seats for kids?
They are WAAAAAAYYYYYYY up at the top of the stadium!





















Monday, July 30, 2012

No more tippy toes!

Today we got Seth's SMOs.  The purpose of the SMOs are to keep Seth from walking on his tip toes.


Here is the gang in the waiting room!
They were sooo good! 
The orthotist said they were amazing. I am so thankful
that they behave for the most part when we are in public.
Home is another story ... ;)


 
First fitting

With out shoes standing

Without shoes sitting


We took a pair of hand-me-down shoes
to wear.  These were Bub's and they fit
really well, but are really worn out, but
they will work for play shoes!  We
ordered him a pair of New Balance to
wear out and about. 


Friday, July 27, 2012

DIY Cochlear Implant Speech Processer Shirt

I made a few changes .... Update here


I wanted something to encase Seth's speech processor.    We have been clipping the processor to the back of his shirt.  The processor weighs down his shirts and looks pretty awful and I am afraid we will lose it.   If you know Seth, you know he moves A LOT! I was worried about the clip coming off his shirt and us losing the processor.  We ordered a few options from Advanced Bionics; armband, body harness, lanyard ... but they all required the clip to be used.  I am not convinced that the clip can withstand Seth's movements.

I've seen a few shirts online that would meet our needs ... all underwear style shirts that cost 30ish dollars.  A five pack of a-line undershirts are only about 10 dollars ... I am much too frugal for that!!!!
I made one for free ... I had everything on hand.  I used blue thread for this, normally I would use white thread on a white undershirt ;)  I was prototyping and made this in about 10 minutes, with 9 children ... some running amuck and some "helping"  with things like spilling all my pins on the floor.

I took the shirt, folded it from the hem to the armpit, sewed Velcro on for a closure, created the pocket for the processor and closed the hem.  It is not fancy by.any.means ... but it is practical and cheap.

I am going to pick up a five pack of undershirts at WalMart and make a few more.




Before



With the hem folded up to the armpit of the shirt, I used a red marker to mark dots to line up the Velcro for pinning.  Here the two pieces of Velcro are pinned.  I used a 2" Velcro that I cut at a 1" height.


I sewed the Velcro to the bottom hem first.

Then sewed the Velcro onto the body of the shirt.


I created the pocket using a zigzag stitch.  I stitched over it three times.  If I had a serger, I could have done it in one pass, but my sewing machine is a very basic singer model that is over 20 years old, so it does done have any fancy tricks.


I sewed the hem onto the boy of the shirt, leaving the pocket open.


Inserting the processor.


Processor inserted with coil attached.



Wearing the designer duds!  Not bad for free and ten minutes of distracted time.  ... It took me longer to write this blog than it did to make the shirt.



If you are more clever than I, you will see my mistake ... ;)

I did not realize it until I flipped the shirt right-side out ... so I learn ... :)

I believe the pocket is deep enough that the Velcro may be unnecessary.  I am a little paranoid that we will lose the processor, so I will probably make the rest with Velcro.

Thursday, July 26, 2012

Mapping and Hearing

Seth had his second mapping yesterday.  He was WILD!

He has been a little off  ... he has been putting everything in his mouth and hitting himeself again ... I think it is a reaction to not knowing what to do with all the sound.  He seems to vascilate between super happy to confused to mad. I can only imagine what he is thinking.


but .. but ... but ...
He is hearing! He is responding! He is seemingly happy about it when we are focused on hearing activities!

 
He pulled his hearing aids out A LOT .. A LOT, A LOT   ... he is not really messing with his coil or processor.  He did pull it off twice with one therapist, but he tends to act up for her a lot and of all his therapists, she has the most trouble handling him and making him listen. 

Second mapping session
video


video



Faith is playing the recorder with him - see the mouth thing?

video


Hosanna!  Seth is really enjoying the music
video

And he signed more -

without a hand prompt
 without anyone modeling
without him using my hands to sign

... HUGE ... HUGE ... HUGE !!!!!!!!!!

<<<THIS VIDEO IS AWESOME >>>

so much happening in this short clip

Communication
Expressing Emmotion
Cognition
Hearing

video

Tuesday, July 24, 2012

Activation!!!!!!!

What a day!!!!!  It started out with an appointment for Gloria at TCH.  While we were at TCH, we met TWO other families and their children ... with cochlear implants.  The Lord knew I was a bundle of nerves and He put those folks in my path.  Isn't it just amazing how He cares for us?



Seth's incision site at two weeks post op.  Doesn't it look phenomal?



Here, Seth's awesome audiologist is prepping his coil.   ... He doesn't have a clue about what is going to happen :)




And what you all have been dying to see ...
Hearing voices - mine and his audiologist's

video


He was HAPPY to hear!!!! 

Praise God, Praise God, Praise God!!!!!


video





I was excited, but also nervous and a bit fearful that he would totally flip out.  He didn't!  He continues to amaze me.


Tonight we took him through the house introducing him to "house sounds."

Water

Singing Toys

Piano

The CD Player


In the morning, I am going to work with him listening to the doorbell and knocking on the door.




Here the coil is attached and his hair is pushed out of the way.  When his hair is over, you can barely see it.  So far, he has not pulled the coil off.  It has fallen off many times due to his rocking back and forth and rolling his head.  It has two magnets in the coil, I am not sure if a third can be added or if it would make the connection too tight. 

We have another mapping session scheduled for tomorrow.  I will ask about another magnet. 

 


I have other videos, but they have been difficult to upload.  I'll try again tomorrow.






Saturday, July 21, 2012

Auction Promotion!!!!

The auction for Rowyn and Zekiel is going strong!  Many new items were added and some are still without bids!  Please visit the auction and see if there is something you have to have!

http://goodthingsinsmallpackages.blogspot.com/

Friday, July 20, 2012

4th of July

My BIL emailed and asked for a copy of this photo.  I thought I would put it up here, then he can just snag it and you all get to see how cute the kids were on July 4th.




Wednesday, July 18, 2012

Why?

I am sure many of my reader friends know that Catherine from Wronginalltherightways  and I are good friends and some of you read her blog.  If you miseed it, she just posted a one year update on her girls http://wronginalltherightways-travcat.blogspot.com/2012/07/9192-hours-of-hope.html
It chronicled the year of healing her girls have experienced.
It turns out Vicki Lou should never have needed that healing ... at one point she was a healthy and pudgy! 

Our friend Tracey had taken pictures of Victoria, six months before Catherine met Victoria.  Neither Tracey or Catherine recognized those pictures as being Victoria. 


I am heartbroken   ... I have copied and pasted Tracey's blog in its entirety. 


This is why ... this is why .... this is why ...



"I have gotten Many comments from yesterdays post, even a not so nice one! I don't understand why people feel they have the need to spread hate for adoption. Do they think the need is not real? THE TRUTH IS REAL AND I WILL PROVE IT TO YOU!!

I have met so many wonderful people along our adoption path, each with a different story but all with a wonderful heart for adoption. We as adoptive parents search for answers and the truth about why our child is the way they are and why they do the things they do. I have found answers to some and sadly the answers I have founds sickens me, even for my own little guy, Kullen

After posting my blog post last night, I received a comment from a follower of my friend Catherine's blog. She noted that a picture I posted looked alot like Catherine's little girl named Victoria. I then kept looking at the pictures I had of her and then the pictures Catherine has of her and realized that they did indeed look alot alike.

You see, We adopted Kullen before Catherine was there and we shared info with her about the orphanage and even the children we had seen there. We seen her little girl Francesca each and every day, but her little girl, Victoria we did not see, or did we?

I called Catherine this morning and asked her if she had read my post last night and she said she did, why? I explained to her that a comment I got about my post, thought a picture I had posted looked alot like Victoria. She did not see her in any of the pictures so I asked her to look again as I explained that this little girl was always expressionless, never smiling and had a little birth mark on her face. She looked closer and realized this was her and she could tell by her eyes, the eyes she looks into each and every day.

Why would she not recognize her own little girl you may ask? Well, I will show you why. What you see will shock you just as it did us. We met her little girl 6 months before she did and the changes were astronomical! This is what sickens my heart!!



Do you see this beautiful little girl? She certainly looks pretty healthy but quite withdrawn but she was in a crib in Kullens room with the other children..........but in 6 months time, what happened to her? Why was she suddenly left in the back room, barely fed and pretty much left to die until Catherine came to get her? What did this little girl ever do to be treated the way she was?

Why would a person do this to a little girl? This is what she looked like from neglect in just 6 short months. To us we think, 6 short months but I am sure to Victoria and her tiny deteriorating body that it was 6 LONG MONTHS!! I am shocked....this is ALL THE PROOF THAT YOU NEED!! If this little girl was there any longer, she would certainly not have lived much longer. I thank God that Catherine was able to get to her in time and that she now has a living family and the medical care she needs!

Children need loving families no matter what and this kind of abuse in orphanages MUST end! I know many other stories similar to this and it is all very sickening and there is absolutely NO excuse and the truth must be heard!!

This is why God has chosen or family to bring home our son Kullen and now to bring home Rowyn and Zekial. He has called us to do this and we are being obedient. Has God been trying to tell you something? If so, You really should listen! Adoption is NOT for everyone, that is not what I am saying but he may be calling you to help in some other way."

Monday, July 16, 2012

My answer ...

... to these questions ...

Is adopting a child with special needs fair to your other children?

Are your other children suffering because of sacrifices they make for that child?

Do your children resent their sibling with special needs?


Look at this picture ...

 



Is this a picture of a child who is suffering because of their sibling with special needs?

Or is this a picture of a child learning unconditional love?

.
.
.
.


Faith asked if she could nap with Seth this afternoon.  Seth isn't an easy kiddo to sleep with ... he rocks (see the protected walls we put up to keep him safe) he screams, he laughs, he gets in and out of bed and carries on a lot.  She does see those actions, but she loves her brother anyway!!!! 

Is that fair, is she missing something, is she suffering???

I am so incredibly proud of how all my children embrace one another. 

Please don't let the fear of what your other children may lose, have to endure, suffer ... stop you from adopting a child with special need.  They will gain so much more that you can ever imagine.

Is it hard?  Yep!  Is it worth it? Yep!  ... You and your other children will grow and be so much more than you ever imagined ... you all will learn how to be the hands and feet of Jesus. 

And a child that deserves a family ... will have one.

Sunday, July 15, 2012

Cochlear Implant Surgery - GRAPHIC picture WARNING

Hey friends --- this post contains graphic inner ear pictures .... if that kind of stuff wigs you out, you better skip this blog post :)



Seth went for surgery on 7/9
The surgery was a success and recovery has been awesome.
He will be activated in another week.  We will have a several hour appointment where they turn the device on and then map the sound.  This site has a much more elloquent explination of mapping than I could offer.  If you are interested in the technical stuff, read this http://cochlearimplantonline.com/site/mapping-a-cochlear-implant/





Daddy praying over seth before the surgery


Waiting to go back ...



What the surgeon did ....



Recovery



Not happy in recovery, but ready to go home.



Incision site - day 1



Fancy bandage


Sucking those fingers ... one of his favorite stims to comfort himself

Not long after this picture, he came to me and held his arms up for me to pick him up  - FIRST TIME EVER !!!!!!!!



Incision site day 6
Incision site withot hair pulled back ... you can hardly tell he has an incision.



His handsomeness to bless your day!!!!