Still no diagnoses.

We met with Cameron's neurologist yesterday and his staff. We were there over 5 hours. Mostly waiting which is sooo much fun with two active toddlers-NOT. It wasn't too bad though.

We talked with Dr. Foster quite a bit and answered all the usual questions about his behavior and any new developments. Unfortunately it seems as though we are just as far away from a diagnoses as we were a year and a half ago. Cameron's case is just so unlike most brain diseases.

They did a whole other batch of genetic tests this morning at Memorial Hermann. They feel strongly that it is a genetic disease but didn't mention much about mitochondrial disease this time and in the past that has always been the front runner. They even mentioned Retr syndrome (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002503/) which in the beginning thought to only occur in girls but apparently it can be present in males as well.

We did read the reports from his last MRI and the only new information we saw was that he now also has diminished gray matter in the hippocampus region. This is what causes long term memory problems. That makes so much sense to me because it usually takes Cameron a very long time to learn new things but if you don't use that new skill for a week or two it is GONE and you have to start over.

We are relieved that Cameron has been mostly seizure free since his first episode.

Also, Cameron has started babbling. He will say hi over and over in his sweet little voice and now he is babbling 'buh buh buh.' We all love to see his big smiles as he entertains us with his sounds. He has been quiet so long so we love love love it!

We are driving home from our doctors visit in Houston right now. After two nights away from home we are ready to get there!

Thank you for all of your thoughts and prayers!

Lots of news.

Last week we learned that our insurance had changed and that Cameron is only allowed 20 therapy visits per year. Cameron meets that in a single month so obviously we have had to cancel all therapy until we find a solution. We have always been turned down by government programs in the past but I am reapplying. It's all we know to do. We cannot afford to pay out of pocket for therapy so we are hoping to find help. Cameron will require therapy throughout all of his life and it is so important for him.

Also, last week we met with Brian from Care Source (awesome service!) and were talking about getting Cameron a bathing system for the tub. He has outgrown his baby seat now that he is a whopping 32lbs and he still requires support in the bath. We picked out the best one suited for Cameron's needs and then found out a few days later that the bath chair is not covered by our benefits either even if he needs it for medical reasons. Cameron also needs new leg braces because he has outgrown his first pair. Both of these things are very expensive as I'm sure you know. Everything for special needs children is.

We are wanting to do some fundraisers to raise money for these items and for Cameron's care as well as overnight trips to Houston for his doctor visits. His latest blood work is costing us over $3000 that we are on a payment plan for.

I don't mean for this to be all about money, but unfortunately that is our main problem lately. If you have any ideas for fundraisers or would like to help us get something started please comment below or contact me by email or Facebook. All help is greatly appreciated!

*right now we are having an Avon fundraiser!

Check it out here: http://shop.avon.com/shop/default.aspx?newdept=&s=Fund&c=repPWP&otc=201120&bnd=&setlang=1&ym_mid=&ym_rid=

Just be sure you have Cameron's event selected!

I Am Going On A Journey

I Am Going On A Journey

I am going on a journey,
Won't you come along?
I need someone to help me.
A person big and strong.

I'm walking on my journey
But my feet are very small.
Can you stand beside me,
And catch me if I fall?

At times when I can't keep up
With life and all its fears,
Can you put me on your shoulders
And wipe away the tears?

When the steps I take are not big enough
And it's hard for me to grow
I know I can depend on you
To let me take it slow.

I'm going on a journey,
Please, won't you walk with me?
I need someone who understands
The place where I should be.

I promise when the road is tough
And you want to turn back home.
I will hold your hand real tight,
So you won't feel so alone.

I'm going on a journey
I don't know where it ends,
But if we walk together,
We can always be best friends.

And when the journey's over
And we find where we should be.
I know that you will be so glad,
You took this path with me.

I'm going on a journey,
Please, won't you come along?
I need someone to guide me
A parent—big & strong.

Written by Sally Meyer

HEAVEN'S VERY SPECIAL CHILD by Edna Massimilla

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

I read these poems this morning and was really touched by the words and it brought me back to a poem I have carried in my Bible for as long as I can remember. My grandma gave it to me a very long time ago. It was read at my Father's funeral back in 1988. I used to cherish this poem so much because it helped me cope with my father's death, but now I have pulled the thinning paper out of my Bible and realized that it was meant for me and for this time in my life.

"I'll lend you for a while a child of mine," He said.

"For you to love the while he lives and mourn for when he's dead.

It may be six or seven years, or twenty-two or three,

But will you, till I call him back, take care of him for me?

He'll bring his charms to gladden you, and should his stay be brief,

You'll have his lovely memories as solace for your grief."

"I cannot promise he will stay; since all from earth return,

But there are lessons taught down there I want this child to learn.

I've looked the wide world over in My search for teachers true

And from the throngs that crowd life's lanes I have chosen you.

Now will you give him all your love, not think the labor vain,

Nor hate Me when I come to call to take him back again?"

"I fancied that I heard them say, "Dear Lord, Thy will be done!

For all the joy Thy child shall bring, the risk of grief we run.

We'll shelter him with tenderness, we'll love him while we may,

And for the happiness we've known, forever grateful stay;

But should the angels call for him much sooner than we've planned,

We'll brave the bitter grief that comes and try to understand!"

Blessings.

Isaiah 40:18-31
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

*click the highlighted words for more information*

Today I am feeling overwhelmingly blessed. I am thankful for cartoons playing a bit too loud, snacks spilled onto the floor, and suspicious giggles coming from the other room.

With the chaos of having two children and one with special needs sometimes the beauty of every day can escape me, but after this last week I am very aware of how blessed we are to have each and every moment.

We have been traveling down a winding road for the past two years trying to reach a diagnoses for Cameron, but we have been so fortunate to never have to encounter some terrible things that some have to face nearly every day.

This past Tuesday around 11:30AM Cameron had his first seizure ever. Words can not describe how terrified I was. Thank GOD Cody had come home for lunch which is a rarity. We rushed Cameron to the doctor where he continued having seizures and vomiting. He was struggling for breath and never regained full consciousness. An ambulance came and took us to the ER and Cameron's seizures got worse and more strong as time went on. They tried multiple medicines and nothing worked. His breathing was becoming more labored and his oxygen levels continued to drop. Finally, around 5:00pm or so they had to sedate and intubate him. We were absolutely horrified as we watched him lay lifeless on the table with the slew of doctors and nurses running through the room. Cameron had seizures from 11:30AM to 5:30PM without ever regaining consciousness. He was not asleep, just not there. His eyes were rolled back and he was unable to move at all except for the involuntary motions of the seizures when they would flare up.

Around 6:00PM they life flighted him to Scott and White Temple in a helicopter. They removed his breathing tube and after a while PRAISE GOD Cameron was breathing on his own and was looking around. He was very out of it after being on so many meds but I can't tell you the relief of seeing him look AT ME and not through me. We spent the rest of that day and the next in the Pediatric ICU and then our last night we were moved to a regular room. Cameron did have a lot of breathing difficulties the first night and remained on oxygen but the doctors believed it was due to all of the heavy medications that he was given earlier that day. It seems like we were in the hospital two weeks. I cant believe that this ordeal was only 3 days-it seemed like so much more.

So, now on top of his un-diagnosed white matter brain disease Cameron was diagnosed with Epilepsy and Status Epilepticus. Status Epilepticus is a very serious condition and extremely life threatening if not treated aggressively.

With prolonged seizures like Cameron endured there is a risk of brain damage and also death. Cameron had an MRI and also a 24 hour long EEG. The EEG showed a slowing of the brain which is most likely the brain damage from his seizures, but we are incredibly greatfull because Cameron is once again defeating all odds.

Cameron has regressed in several ways, but we and his therapists believe that with time and work we will get him back on track. Cameron could have lost all of the past years work, but he hasn't! He is doing exceptionally well with his sign language and he is still able to pull up and many other things. He was even trying to mimic us doing the sign for 'I love you' yesterday and that is a really tough one for Cameron because he has a lot of difficulty isolating his fingers-especially after his seizures. He isn't doing well when we try to get him to step with us. It seems like he has quite a bit of work to do in that area, but still we are so thankful! Cameron was so tough throughout all of this and remains quite the trooper!

Cameron is now on a seizure medicine called Keppra that he takes orally every morning and evening. We also have to carry around emergency medicine for him called Diastat in case he has a seizure that does not resolve on its on within 2 or 3 minutes. 

I want to send a HUGE hug and thank you to every single one of you that have went through this with us and sent your continued prayers. We felt the love even through the scariest moments and it was so special.

Therefore my heart is glad and my glory [my inner self] rejoices; my body too shall rest and confidently dwell in safety. Psalm 16: 9

HERE IS THE FLYER TO PRINT AND TAKE TO ROSAS TONIGHT!

COME SEE US AND HELP RAISE MONEY FOR CAMERON! :)

The words of a mother...

"Remember that he is, first of all, my child. Let me see him smiling in his sleep and let me think about how handsome he is... and not about how delayed that smile was in coming. Help me not lose sight of my son in the shadow of his limitations... I know that you care for my child and that you work hard with him. I need your expertise to help him become all that he is capable of being. You need my help in understanding who he really is and in following through at home with things that are important. Remember, though, that you send him home at night and have weekends off and paid vacations. Let me have the luxury of having a vacation, sometimes physically, sometimes just emotionally, for a day, a week, a month, without your judging me. I will be there for him when you are long gone. I love my child with an intensity that you can only imagine. If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me. Celebrate with me, rejoice in who he is and who he will become... but forgive me if from time to time I shed a tear for who he might have been."

 Author Unkown


I saw this online and it really touched me because I know exactly how true these words are and I wanted to share.

Rosa's Cafe Fundraiser!

Come to Rosa's on Monday, June 20, 2011
                              5:00 PM to 10:00 PM

Print the attached flyer and bring it with you to Rosa's and present when you order. Feel free to share this flyer with all of your family and friends! Rosa's Cafe is donating 15% of the total net sales to Cameron!


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