The story of my(kids) life

The story of my(kids) life
"Josie NO!"

Friday, February 5, 2010

About time for an update


Text ColorWell, I know that it has been quite a while. I don't really update the blog much, but I think you all know where to find me. Facebook! Anyway, I do have a couple of things to report...
Henry has had his follow up MRI done. We expected to have to wait a while for the results, but when you have Alli Summers on your butt, people seem to be very timely! HA-
They MRI Report reads:

"Extensive encephalomalacia in the central white matter with some thinning of the corpus callosum. Ventricular size is within normal limits. Myelination appears slightly delayed. No acute or focal abnormalities are seen."

This report is pretty much the same as we had around his problems after birth. Things have not worsened, or gotten better. This is OK. In unmedical language, this is how it was explained to me; If Henry's brain was a desktop computer, he has his monitor, keyboard, mouse, and tower. EVERYTHING THAT YOU NEED! BUT- His wires are a little messed up. He needs help training himself how to reroute his information. White matter is the metal inside of the cord, and Myelin is like the insulation around an extension cord. Delayed myelination means that the nervous system may not work as well or as fast because of possible short circuits.
We believe this can be overcome! Like I said, he has all of the main computer parts, its just learning how to get electricity to it.

So, what is the next step? We are prescribed to have a PT(physical therapy) and OT(occupational therapy) evaluations done. These evaluations will tell us ALOT! They will be able to pin point where and if we have any problems yet so that we can work on fixing them ASAP! I have an appointment for the OT next week. Children's is booked on Pt's for a while. They don't know when an opening will be, but will call me as soon as they have one. The OT evaluation will test finner skills mainly involving the upper body. This is great, because his pediatrician says that his upper shoulders feel a tad weak. we have been doing exercises to help this, but I look forward to learn more.
I have checked into the Access school here in little rock. As soon as we get his evaluations done, we will know if he will need this type of schooling. But it is just like daycare, but they work on him 5 times a week, from 8-3:00. We will see if this is necessary.
Ill keep you updated on his OT evaluation after next week. (Tuesday 11am)
Other than that, His follow up with his neurologist about his MRI is going to be April 2. Forever away!!

After all of this, we had to take Henry to the eye doctor. We have noticed that sometimes he seems a tad cross eyed. Ends up, we were right! But, in Henry's case he isn't really crossed, just when he has a hard time focusing his eyes cross. This is good, and the doctor seems to think that it can be fixed with these tiny precious glasses! Bless his heart!!!

Other than all of this, we are good. I'm crazy just trying to deal with the unknown! Kent is crazy trying to deal with me, and Josie.... Josie is great! She just floats in her own world. She has no limits to her vocabulary we have found out. ha ha--- And just wants to be loved on and love back. She is a mess, but such a sweet girl, and great big sister!

If anyone knows anything about Henry's terms that I don't, please let me know. Any input is great and appreciated! Prayers are answered, so lets keep pumping them out people!! We love you and you will hear back soon.

The Summers

Thursday, December 10, 2009

Our Christmas list....



Everyone asks, so Im just going to post it.




Josie-


Needs toys like Blocks or Connectable Leggo type things

Puzzles
Anything that makes her use her brain. (12 Month toys are a joke!!)

Warm PJs 18 months

Size 4 diapers

Size 4 shoes



Henry-

Socks6-12 months (big feet)

Clothes 3-6 month for now

Size 2 diappers

Have fun with it!

Thursday, November 5, 2009

October was FULL of fun!!

We started with Race for the Cure.

That's right, Josie and I got up at 5 am, bundled up warm, and headed downtown for the 3 mile walk.

She did so good. Rode in her stroller the entire time, with close to no complaining. We walked with my childhood friend's company called Buck Girl.

As you see, they made t-shirts for everyone, mine being a tad inappropriate.... I didn't make it.

And Josie had her own that said "Tator Hog" her nick name by her dad.

I want to say it was 40 degrees that morning.

But she did wonderful!

Then to Florida we went!!!!
Brad and Jenn's wedding was so beautiful!
We had a great time.

I mean, can you beat that???
Henry has pretty much mastered a giggle and a smile.
He'll be 3 months old on the 14th of this month.
Josie NEVER smiled!
Still, its hard to get her to smile on command.

But we all had a great time.
Outlet mall shopping was interesting with 2. Henry, just like his dad,
HATES to shop. Thank God for Ganny!
That's all I have to say about the entire trip.
Every night we got blessed with an amazing sunset.
Priceless!
Just like birthday cake,
Josie was not so much of a fan of the sand being on her hands.
Its like glitter, syrup, super glue, and jelly....
How does it end up EVERYWHERE???
Just as always, even on the 5th day of being there-
Josie is still a Nonna's Girl!

And Henry is just that way with Ganny.
Ganny's Boy.
Did I mention Thank God for Ganny??!!
The wedding was breathtaking! Jenn was KNOCK DOWN GORGEOUS!!
I had already changed in this picture, but she is still glowing!
We love her.
She loves my brother....
.....................

~BLESS HER HEART~


Monday, October 12, 2009

Lots of catching up to do

I am so sorry that I have been a slacker on my blogging.

A tad busy these days. ha-


We will start with Josie-

She is 1 now. Getting to be a big girl. Still no hair.

I thought that she would never walk! I have 2 friends and all of our little girls

were born within 6 weeks of each other. So its been

BIRTHDAY PARTY MADNESS

in our world. At the first party, at her best friend Greta's house, Josie noticed that all of her friends were walking.

After we got home that night, she was waling all over the house.

YAY!

By her own birthday party, it was 1 year old city!

Walking everywhere.


This is Josie and her bestest Greta Marie.


She was not real sure about all the attention at the party.

But it was a blast.

We should of wrapped up half of the gifts for Christmas.

But- Now that she is active on her feet. The skate park better watch out!!!Passenger seat driver.



~News about Henry~


As you can see, Henry Kent is a happy boy! He has come a long way.

We went to a neurological check up last week to hear GREAT news...


The news was-

The did another EEG. That is where they hook probes up to his head to read his brain waves.

There were a few "spikes' that showed up. That means that there is possible potential for seizures to take place. So, they left him on his medication, and they had previously planned to take him off at this point. But that's OK.

Then, they did a physical on him.

As soon as I laid him on the table and he started squirming around I saw the doctors eye brows lift.

She then pulled and tugged on his limbs, bent his back back, and rotated his neck.

She laid him back on the table and looked at us and said,

"There is nothing wrong with this boy."

SERIOUSLY?? I said, "you can tell this early?"

She replied that she cant write it in her blood until the next MRI,

But that she can almost be 100%



That was the best news that we could possibly dream of!!!

We will have a running, jumping, hunting, skating, trouble getting into, and PERFECT little boy.

Prayers work.

Thank you everyone for your help.

Thank you God for your power.

We look forward to our trip to the beach at the end of this month.

We look forward to the holidays coming up.

Hey, We look forward to life!