Walking Around

Yes, Joey is walking, in a gait trainer. At school the therapists have been trying to find a special walker for Joey to use on the playground and around the class room. Today when I picked him up from school, he walked in his walker down the hall about 50ft or so. He wasn't being pushed or pulled. He started to walk even faster when I called to him. I almost began to cry. That was the first time I have seen him indepedent since the accident. WOW! I think that's the only way I can explain what I saw. WOW!

Another Sunday Poem

I really love these poems because they say a lot about our feeling and our lives with special need children.

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday's Poems

I have read many quotes and poems and inspirational stories and sayings, so I have decided that every Sunday I will share a new one with everyone.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, 

a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. 

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth

Selecting his instruments for propagation with great care and deliberation. 

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? 

That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wear off she'll handle it."

"I watched her today. 

She has that sense of self and independence so rare and so necessary in a mother. 

You see, the child I'm going to give her has a world of it's own. 

She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you." 

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. 

Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word.

She will never consider a step ordinary. 

When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see--ignorance, cruelty, 

prejudice--and allow her to rise above them. 

She will never be alone. 

I will be at her side every minute of every day of her life 

Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. 

"A mirror will suffice."

P.S Joey has been doing very good. School is great and therapy is great.

Great Month So Far!

So far September has been a great month. Joey started pre-school three days a week and is having a great time. He finger paints and sponge paints, he plays with blocks and sing songs at circle time. Of course his aide sits with him and moves his hands to do all the fun stuff. He is also put in a gait trainer (a gait trainer is a supportive walker) for recess time. He walks all over the playground. Boy does he just knock out for a great nap after school. I don't think I have seen him sleep so hard before. 

Also in Sept. we have had two doctor appts. The first was his Orthopedic. Something that we have to keep an eye on with Joey is that he doesn't get scoliosis and his hips don't dislocate. He had an xray done on his back and hips and they are completely fine. No issues. Then we went to the Opthamologist. The doctor said that he can see. He just doesn't use his eyes together to see, meaning one eye is looking one direction looking at something and the other eye is checking something else out. So the messages that the eyes send through the brain is getting all mixed up. Although there has been many times when Joey has used both his eyes together. This will get better as his brain continues to heal and grow.

So good month so far. I still have two more doctor appts. this month.

Complete Update.

Joey has made so many changes over the last year and a half, I figured that I'd give a somewhat quick review of what's been going on with Joey.

January 16, 2007, Joey had a near-drowning accident which left him severely disabled. He was 18 months old. After 5 weeks in the hospital he came home with a feeding tube (g-tube), taking Baclofen and Vallium. He was unable to eat, see, walk, talk, move much at all, his muscles were very spastic and cried all the time. Up until he was three years old, he received OT, PT, Feeding, Massage, Equestrian, and EI therapy 6 days a week. He also did a half session of Neuro Suit therapy and did over 200 HBOT sessions.  I was able to slowly decrease and finally take him off his Baclofen meds. After the age of three, he no longer qualified for all those hours of therapy. He now receives 1 hr. OT and PT a week through the state. I then take him to therapy in El Segundo for 2 hrs of OT and PT 2x a week, which is not covered by anyone (insurance, state, etc.) He is also off his Vallium meds and no longer uses his g-tube.  He baby talks and has said some words and he can sit unassisted for a short amount of time. His vision is improving, he can now see light and shadows and has a delayed tracking. He moves all around the room on his back or on his tummy, although does not crawl yet. He is learning to and I'm sure he will shortly. Joey has also started school. He goes to school 3x a week.

Wow, what a year and a half.

No more meds!

That's right, Joey is no longer on medication. As of last week I have taken him off his last medication. Leaving the hospital over a 1 1/2 ago, Joey was on Baclofen for muscle relaxation and Diazepan for seizures (which he never got) and for general relaxation. 

This week I take Joey to a couple doctors appt. and he also begins school.

We went to San Diego this weekend for a mini vacation. It was a nice relaxing time even though I was sick and lost my voice.

Happy Labor Day everyone.