Another Round of Intensive Therapy

Starting next week, Joey will begin another 3 week intensive neuro suit therapy session. I'm so excited. It is very expensive to do and Joey's therapist is giving him the session for FREE. Thank you so much Trish. We love you. You are the best.

Please pray for amazing results.

PUMPKIN PATCH!

Jack and his pumpkin.

Joey and Daddy with Joey's pumpkin.

My family having fun.

Yesterday we took the kids to the pumpkin patch. This was a great year for picking pumpkins. We told the kids if they can carry it, they can buy it. Jessica's pumpkin (not shown) is bigger than Joey himself.

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Busy Times

So once school started I thought life would settle down to a slower pace. Boy was I wrong. However, life got into a routine, which is good. Joey goes to school Monday, Wednesday and Friday's from 8:15-11:30. Then home for lunch, then maybe a nap, then we do our rounds picking the other kids up and then I go to work. On Tuesday and Thursday's I drop the kids off at school then head out to El Segundo for Joey's therapy from 9-1, then in traffic back home. Pick the kids up from school and then off to work again.

Joey is doing great in therapy. He is really progressing great. He sits in a cube chair for a long time now at school and is walking in a gait trainer. He got his AFO's to help keep his muscles and tendons in his calf's lengthen. He hates wearing them. It hurts a bit. He's getting better though. During the day at home he stands in a stander and practices rolling. He commando crawls all over the floor, but with no purposeful destination. 

This last week was rough.  Joey got a cold, just a runny nose and some very little congestion in his chest. Nothing very big or exciting. So I began to give him Tylenol cold medicine. I noticed that his stomach began to hurt and he began to break out in a rash. So I stopped the medicine. Turns out he had an allergic reaction to the medicine. The rash is like a very very bad sunburn. So because no medicine, his nose doesn't stop running, it's hard for him to breath and he is not eating much. It is to hard for him to eat and breath at the same time. His body is very stiff because of the rash and he is having a lot of discomfort. Then amongst all this, I noticed his g-tube was loose. I kept filling the balloon that holds it in place with water, but it kept coming loose. So I took him to the Dr. and it turns out that the balloon burst. That was what was causing his stomach to hurt. So as of today he has a new g-tube and has had to be fed with it, because he won't eat and I don't want him to lose any more weight.

So that is our life this week. Just another crazy busy day at the Stafford house.

Something New

I noticed Joey doing something new. With his left hand, he has been moving just his fingers in slight ways. Meaning bring some fingers together, touching just the tips of his fingers, etc. It seems like his brain is beginning to recognize his hand and fingers. Normally his hand is either in a fist or all fingers and hand extended out. He has only done this twice in the last couple days that I have noticed, but he has NEVER done this before. Yeah!

New Pictures Posted

Take a look at the following website. I posted some new pictures.   www.dropshots.com/fightingjoey

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.