Thursday, August 28, 2008


Yesterday I thought I heard Joey say "MOM, but I wasn't sure because he makes a lot of different sounds. Although I heard him say it a few times and each time he said it, he seemed to use it in the right context. Then this morning he said it a couple more times and I began to believe that he was really saying it to me. He would say it when he was mad. At therapy he was crying because he had to work really hard. He looked up toward me and stopped crying for a second and said "MOM". The therapist look at me and I grabbed Joey and gave him a big hug. Of course he stopped crying. So Joey's new word is "MOM". 

Yeah! Joey!

Back to a regular schedule.

Life in the Stafford House is now getting back to a regular schedule. The kids started school on the 27th. Jessica is in Junior High, 6th grade. Jack is in 3rd grade. Joey goes to El Segundo for therapy on Tuesday and Thursday's and staring next week will be going to school Monday. Wednesday and Friday.  

The suit therapy has relaxed Joey a lot. He moves is body better and he is making more purposeful movements. He talks more and moves all over the family room (whether on his back or on his tummy, not crawling, just squirming). He is doing great. 

Now the Stafford family, with the kids friends are going to San Diego to go camping.

Happy Labor Day Everyone.

Saturday, August 23, 2008

End of Neuro Suit Therapy

Yesterday Joey finished his 3 wk/5 days/6 hr intensive Neuro Suit therapy. How did he do you ask. It's hard for me to tell, I think because I have been with him for the whole time. Jeremy was away for a week and when he came back he said he changed a lot. He said he is holding himself up better, he's more relaxed, he seems to be making more purposeful movements, and his eyesight seems much much better. I can tell you what he did accomplish at the therapy. He was able to sit on a bench and balance himself for just under 2 min., also with a little nudge of his leg, he was able to roll from his back to his tummy more consistently. He also with help began to crawl more. Now even though he has managed to accomplish these things doesn't mean he will continue to do them with out constant therapy to reinforce these behaviors. 

When Joey turned three he no long was eligible to receive therapy services from the county. The state will give him 1 hr PT and 1 hr OT a week, which is nothing compared to the 8 hrs total he was getting before. So I began the search for a therapist, keeping in mind that the cost was completely on us. Well, I have found some great people that will continue to work with Joey. The therapist from the Neuro Suit program in El Segundo will continue to see Joey 2x a week for 2 hrs a day. I also found that the cost was the same were every I went. I will now beg the insurance company to help more. His therapy will cost me about $23,000 a year. Boy, when they say it was expensive to raise a kid these days, they weren't kidding.

So now with this therapy, Joey should not only retain what he accomplished, but should improve that much better. YEAH!

P.S. I will post more pics and video of his suit therapy by the end of the weekend. Keep checking.

Thank you for your thoughts and prayers.

Saturday, August 16, 2008

This is why things are the way they are.................


You often pity me, I see it in your eyes. You wonder
how much I am aware of…I see that as well.
I am aware of much, whether you are happy or sad or
fearful, patient or impatient, full of love and
desire, or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far
greater, for I cannot express myself or my needs as
you do.
You cannot conceive my isolation, so complete it is at
I do not gift you with clever conversation, cute
remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs, or
comments about the world around me.
I do not give you rewards as defined by the worlds
standards, or great strides in development that you
can credit yourself with .
I do not give you understanding as you know it…what I
give you is more valuable.
I give you instead opportunities.
Opportunities to discover the depth of your character,
not mine, the depth of your love, your commitment,
your patience, your abilities. The opportunity to
explore your spirit more deeply than you imagined
I drive you further than you would ever go on your
own, working harder, seeking answers to your many
questions with no answers.
I am your teacher.
If you allow me, I will teach you what is really
important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon
Most of all I teach you hope and faith.

Friday, August 15, 2008

End of Week Two!

This week was much better than the first week. The therapists worked out the kinks in Joeys body and got him very loose. Because of this, he is working hard at therapy. He listens and does what is asked by the therapists (of course I have to bribe Joey with ice cream). For example, we asked Joey to lift his head up and I said to him that if he does than I'll get him some ice cream.  What does he do, he lifts his head right away. So we began to use this bribe all day and it worked each time. When therapy was over, I went out and go him his ice cream. He is doing a great job. I feel much better with the progress at the end of this week.

Thursday, August 14, 2008

Rollin! Rollin! Rollin!

Today for the first time ever, Joey rolled from his back to his tummy. It was awesome. He already knew how to roll from his tummy to his back. So now he just needs to put the two together and I'll have to baby proof the house. Yeah! Joey.

Wednesday, August 13, 2008

A Good Day!

Today was a good day. The head therapist Trisha worked with Joey for a little bit this morning. Whatever she did to him, it worked. Joey loosened up and was able to work really good today. He was bearing good weight on his arms and was able to hold himself up really well. I have video of him, but I can't seem to download it. As soon as I figure it out I will post it.

Please pray for continued progress this week and next.

Monday, August 11, 2008

Reality Hits Again!

We have begun our second week of Neuro suit therapy. At the beginning of the first week, Joey was very very tight. It took a couple days to loosen him up. So I thought that he would be fine going into the second week of therapy. I was mistaken. He was just as tight again. I  thought that taking a break from therapy in the month of July wouldn't matter much.  It was just a sad reminder that Joey will always need therapy, he will always need to be worked on, whether it's me or the therapists. The center we are at, there are 7 other kids going through treatment. All the kids have Cerebral Palsy. Most of the children have done the therapy before. They have all improved, but are still severely disabled. So it hit me today. It hit me again that Joey will always have issues and I will always have to work with him. I just pray that I will have the energy and strength always to be able to do this. It has only been a year and a half and I have had several moments of needing a break. And that break has caused Joey to get very tight and even regress in some areas. I hope that this reality has showed me that I have to be less selfish in needing a break and work more for Joey. I know many of you are thinking less selfish, how can I think that I'm being selfish. Well many times I feel this way. Whether I am or not. Well, Hopefully this will pay off in the end and as the years go by I will be able to take that break, eventually.

Saturday, August 9, 2008

The end of the first week of Neuro suit therapy was.......................

INCREDIBLE! Joey has been doing great. He has been sitting very good. Standing in his modified stander great and has begun to crawl with help. He is all stretched out and loose. I realized that I need to work with him more during the day. It took Michelle a couple days to loosen him up. On Friday with help from his therapist Michelle, Michelle was holding him at his waist for balance, Joey began to crawl on his own. He crawled like a normal baby would. He moved his opposite arm and leg at the same time. I almost fell over and Michelle felt like crying. It was a great end to a great and tiring week. 

This is my schedule for the next 2 weeks:
We wake at 5:30 and on the road by 6:15, in El Segundo by 7:15, eat breakfast, get a diaper change and begin therapy at 8:00. Then at 11:00 I have lunch for a half hour and continue therapy from 11:30 to 2:00 with no breaks. On Monday and Wednesday I get accupunture from 2-2:30, and Tuesday and Thursday I get Biofeedback for 45 minutes, then on the road to Santa Monica for an hour of HBOT from 3:30-4:30. Then we head home and get home around 5:30. Eat dinner and bed at 7:30. Although when mom gets home she still has to cook dinner, clean house and catch up on all her daily things. Then she's allowed to go to bed about 9:00.

I will post pics soon of Joey the first week.

Monday, August 4, 2008

First Day of Suit Therapy.

Today was Joey's first day of Neuro suit therapy. He wasn't put in the suit today. The therapist just did an evaluation. We were there for a couple of hours, then went to his HBOT. It was a long day for him and me. This has been his first therapy since June.  He fell asleep as soon as he hit the car and then was very fussy the rest of the day. He couldn't get enough water and ate tons.  Today showed me how busy and difficult it is going to be for Joey the next few weeks. We will be on the road at 6am and won't get home till about 6p. He'll do great though. I'll keep you updated and will post pics and videos over the next few days.