So. Yeah.

Life is pretty much the same in the world of Ben. Although he has started jabbering more often and repeating more words. Last night he said 'Papa' back to us and we were so proud! He is getting to where he has more desire to communicate and I love it!

He is having to wear a patch each day over his eye. We have been seeing a Pediatric Opthomologist in OKC. Long drive, but totally worth it. In order to (hopefully) avoid surgery, we are alternating between the eyes each day to make them both stronger. Crossing our fingers for NO surgery! I will write more on that later.

Next week we will be in Shreveport, Louisiana to visit the Shriner's Hospital for Ben's first evaluation! Definitely an exciting time for us, but especially Ben. He will also see a Pediatric Neurologist in OKC on October 10th. This will be done as per request by the Shriner's. Plus, it's something we would have to do eventually. So might as well do it now!

Hope all is well in your part of the world.

Joy




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A Glimmer of Hope

We have officially been approved by Shriner's to recieve care for Ben! Hopefully now we can get some braces for his feet/legs so we can start working on putting weight on them. The approval just happened on Thursday of last week, so I'm still not sure exactly how everything is going to happen. I do know we will be going the first week of October to the Shriner's in Shreveport, LA and I can't wait!

Our biggest obstacle right now is getting him a neurological exam. It is apparently harder to get one than I thought. Especially when you're dealing with a difficult front desk employee at your pediatrician, from whom you require a referral. UGH! Is it hard to hire people that are friendly and helpful? Or maybe just helpful? I would take helpful and not friendly because then something would be getting done. I guess all I can do is be patient. But it's so hard when the care of your child hangs in the balance!

I'll try to keep you updated on the progress through Shriner's.

Taking One Baby Step Forward...and Two Giant Leaps Back.

I have been including Ben in our nightly bedtime stories, in hopes of speeding up the communication process. To my dismay, he has stopped saying the words he was saying before. Which by the way, weren't many. He looks at us and acts like he understands, but has gone to just giggling. No "Bubba" or "Da" or "Mom"...nothing.

It just seems like we're regressing...not progressing.

Any ideas? Anyone?




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Baby Steps...

When a child is diagnosed with something like Cerebral Palsy, the road ahead is so very long. Now the steps of processing this diagnosis were as follows for me, but they could obviously be different for others dealing with the same situation.


*First comes devastation. Why? Because your life will never be as you "planned", it will never be normal, and your child will not get to lead the life that you had dreamed for them.

*Second comes anger, because you can't control what is happening to your child and WHY IN THE WORLD IS IT HAPPENING TO YOU?....it's a horribly, dreadful feeling that can spiral into depression if one is not careful.

*Third comes guilt. What could I have done differently for a different outcome? What did I do wrong? When in reality, you didn't do anything wrong. This one took me the longest to process and some days, I still revert back to this feeling of guilt. I think this is a hard one for all mothers in general of disabled children, whether it be Cerebral Palsy or anything else.

*Forth comes hopelessness. What am I supposed to do now? I have this child that may never be able to lead a normal life and will most likely depend on me for the rest of my life. I have no idea how I am going to provide the things that this child needs.

*Fifth comes strength. I can DO this! He needs me and I am going to do whatever it takes to give him a wonderful, fulfilling life! You find strength from sources you never thought you would.


I suppose I am going through the second step again. I am just so frustrated and angry that we live in a world filled with so many resources, yet I cannot give my child what he needs. The government says "You make too much, so we're not going to help you." I would love to meet the bureaucrats who decided they know what the hell they're talking about when it comes to what someone like me can afford on our salary for our disabled child and STILL have money left to eat, make payments on our cars, and every single other thing on our plate. Those "people" would definitely be getting a BIG piece of my mind...



- Joy

This thing called LIFE.

I had taken a hiatus from posting for few days because of some things going on with my husband's health. We discovered that the right side of his heart is enlarged, so we're in the process of trying to find out why. But, we had to travel over 2 hours to the hospital doing his testing, so we got a little off schedule with everything around here.

One of Ben's little quirks is that he HATES change. So when we tried to get him to go to sleep in the hotel room, he put up a huge fight. Once we actually got him to sleep, he didn't stay that way. He woke up several times during the night. Needless to say, 6 A.M. came way too soon!

Once things get calmed down around here, I'll be able to start posting more regularly. I mean, it'll never get totally calmed down, but the normal chaos will be a nice change.




- Joy : )

The past few days..

I know I have been absent from the blog for a few days, but I promise I will write a good post for you soon! Benjamin's nurse from SoonerStart comes today and I'm hoping for a productive meeting. : ) I will be asking more about TEFRA and what exactly I'm supposed to do with it.

I'll be back later!


- Joy

Yesterday Ben had his visit with our physical therapist through SoonerStart. We are blessed to have such a wonderful PT; he's great with Ben! Since Ben has decided he's tired of just laying down and is rolling over everyday, we are now working on getting him to get up on his hands and knees. Small steps! : )

I don't have much else to report at the moment, just living day to day. I'm in the process of trying to get an Ergobaby carrier. It will take awhile to get Ben a stroller and I can only carry him so much during the day. So the carrier will be a welcome tool for this momma!

We are also looking into something called TEFRA, it helps families that make "too much" but have a child with a disability. Once I figure out more about how it works, I will write more about it!

I hope everyone is having a wonderful Wednesday!


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