Joey's Christmas Present to his Mommy and Daddy

Two Christmas presents. One for Mommy and one for Daddy. Today when mommy and daddy were feeding me, they brought the sippy cup toward my mouth and I SAW IT and opened my mouth for a drink. This time instead of biting it to get the water, I used my lips and mouth to suck on the sippy cup. I was able to suck and continue drinking at the same time. Mommy and Daddy had tears in their eyes. 

Merry Christmas!

Becoming a Scrooge!

Over the years I have become a scrooge. The planning and shopping and wrapping and cooking it's just to much. We celebrate Hanukkah with my family. A Hanukkah party with my moms side and then another with my dads side. We also celebrate X-mas with my husbands side of the family. So things are busy.

The kids have been given homework on their vacation, and not just a little, but BIG projects. I HATE homework. We leave on New Years Eve to go camping. Yeah! Camping is very relaxing and a great way to start of the new year. 

Amongst all the holiday hoopla, I am still taking Joey to his therapy. Twice a week down near LAX we go. He just began his tomatis therapy again. This seems to really calm him and center him. We are not doing any other alternative therapies (ie: HBOT, NeuroSuit, Biofeedback) for a while. I am working on getting Joey to China for Stem Cell Therapy. I am also continuing my research on other alternative therapies. As far as 'How Joey is doing', he made a lot of improvements after his last NeuroSuit session in November and has now plateaued. Which is OK. He is loose and happy and is finally gaining weight after 2 years. Hopefully in March his feeding tube will come out. 

Happy Holiday and Happy New Years to everyone. May 2009 be the best year ever.

My Therapies

I get asked all the time about Joey's therapies. I added a sidebar that lists the therapies Joey has done and is currently doing. 

I am currently researching Stem Cell therapy for Joey. Many kids with the same injury as Joey has had this procedure and has improved greatly. SCT is where they take stem cells either from a fetus, umbilical cord or born marrow and transplant into Joey through IV. This helps create new cells in Joeys brain. I have been researching for a few months now. The therapy cost more than I have ever spent on therapy (approx. $15,000-$35,000, no including travel expenses). It is an amazing therapy and I believe it is worth every cent. Although I still have a couple more months worth of research to do.

Hope everyone has a very Happy and Healthy Holiday.

What I'm Thankful For..............

Happy belated Thanksgiving to everyone. 

Over the Thanksgiving holiday, our family went camping. We have a motor home, so I don't know if you can really call it camping.  Anyways, Joey did not like camping. He has never been this difficult before. So to say the least, camping wasn't as relaxing as we hoped for. Joey showed his displeasure by being stiff, not wanting to eat or sleep and was fussy all weekend. We haven't seen this behavior for about six months or so. Of course as soon as we got home, he was back to himself.

This weekend reminded me of how lucky and thankful we are to have Joey. For years now, we have been so concerned with what Joey can't do and forget what Joey can do.  You forget how important the little improvements are, like being able to hold your bottom lip with your upper teeth, or to bring your thumb and index finger together or to mouth your hand or mommy's cheek. I remember the day he couldn't relax or hold his head up or eat or smile or laugh. It's hard to have seen your son as a typical child and what his potential could have been, to now see your child a completely different way with his potential being much different. Yet I am thankful to have my son and thankful for what he can do and thankful to have a future with him.

I am VERY VERY thankful for my son Joey. For his little and big improvements. I'm thankful for all my family, and friends and therapist who have become my other family and my support group who is always there for me and for YOU.

Reassessment

Approximately 9 months ago, Joey and I started a program called AIAHP (Australian Institute of Achievement of Human Potential). This program involves therapists from Australia coming out to assess Joey and put together a home based program. I am given a home program to work with Joey that involves PT, OT, ST, Vision, Sensory, Oral Motor and Intellect. Every 6 months, give or take a few months, the group comes out again to reassesse Joey. During their first assessment, all of what Joey can do is charted. During his reassessment the improvements are also charted. It can take many years for kids to advance along this chart. There are 6 categories on this chart, example: Gross Motor, Fine Motor, Visual, Auditory, etc.  This weekend, Joey had his reassessment. 

GREAT NEWS, he moved up the chart in three different areas. He also gained 35 new functional behaviors. YEAH!

I can't say that it was all due to this program alone. I believe it was due to the combination of his HBOT, Neuro suit, Tomatis , biofeedback and Equestrian therapy and basic Physical and Occupational therapy. 

I'm pleased to know that all the time and effort and hard work Joey and I and our family put into helping Joey is working.  We still have many years and hard work and levels on the chart to climb, but we are up for the task.

 

My Prize

Today Joey finished his three week intensive Neuro suit therapy session. He also finished three weeks of Tomatis (listening) therapy. 

The first week of therapy was very frustrating. We didn't see much from Joey. Then the second week things began to happen. He began to get better control of his head and arms. By the end of the third week the changes were very apparent. His head control improved alot, his arm control and his control of his eye's improved.  He began to walk with help from two therapists, with no walker or gait trainer. Although the most exciting thing is he began to talk more and a bit more clear. He made all the therapists cry when he said "I Love You". He would say "Hi" when asked and would say "No" when he didn't want to do something. He is a lot happier.

One of the other children, a five year old girl, asked me what Joey was getting as a prize for doing therapy. She was going to Disneyland for the weekend. Joey got a new puppy. Well the family got a new puppy. His name is Winston. He is a Goldendoodle.

Well thats about it. Please pray that Joey will continue to improve and not hit a plateau.

Progress..........slow but steady!

As many of you know from my last post, Joey has been going to suit therapy again. Unlike the first time Joey went to suit therapy, Joey's progress this third time around is slow.  I have noticed that his fine motor skills within his hands have gotten better. He brings his fingers together when he hadn't before. He also seems to be trying to suck. His tongue and cheek movement have improved. His cognitive awareness has definately improved and his feet have also improved do to his AFO's that he wears. 

We still has two more weeks of intensive suit therapy left. Our goals for him are to get him to roll over continuously from tummy to back and vice versa. We also are trying to get him to walk in his gait trainer while wearing his AFO's. This seems to be a challenge for him (forgetting the fact that he doesn't like his AFO's). Of course I wish and pray for faster progress, but will accept his progress slow as long as he continues to progress.

Otherwise, Joey is a very happy boy these days. He is eating well and waking up too early in the morning. His school is on hold for these three weeks of suit therapy. I'm sure he misses his friends. Only two weeks left, then he returns to school.

I'll post more pics soon.

Blessings Always

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.

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.

MOM!

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.

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. www.dropshots.com/fightingjoey

Thank you for your thoughts and prayers.

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

I AM A SPECIAL NEEDS CHILD

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
times.
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
possible.
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
you.
Most of all I teach you hope and faith.

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.

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.

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.

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.

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.

WHATEVER IT TAKES, NO MATTER WHAT!

I will post pics soon of Joey the first week.

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.

Last week of summer vacation for me.

This week is the last week of summer vacation for me and my mommy.  On Monday I start my suit therapy. Suit therapy will last for 3 weeks/ 6 hours a day. Then on my way home I will have some HBOT. I then have a couple days to get ready for my first day at pre-school. Today I went to a water park and me, my mom and Brianna floated in the lazy river for a couple hours. I was exhausted when we left, because I had to kick the whole way around the lazy river. My mom and Brianna just sat in the tube. I don't understand why I always have to do all the work. As soon as we left, I fell asleep in the car. We had a lot of fun. Tomorrow I am going to go to the movies for the first time. I am trying to do as much as possible for my last week of summer vacation. My sister and brother still have a month to go. They leave for sleep away camp in a couple of weeks and my dad goes out of town for work for a week. It will be just me and mommy. I Love My Mommy! She's the best.

Well as for me and my improvements. Not much to report. My mom thinks my balance is improving. Hard to tell, she says it's like watching grass grow. hee hee hee

Bye for now.

A Day at the Park........

Yesterday I meet my sister and her family at the park.  The kids had a great time playing. I put Joey on the swing. He did so great and loved it.  He sits in one of the toddler swings. At first I sat him back. He did great holding his head up and looked normal, but because he is so big, the chain would pinch his arms so I would lean him forward.  He would drop his head forward in this position. I kept saying "Joey, pick your head up, sit up and look at mommy." Every time I said this, he would sit up and look at me. We went to the park again today and he did the same.

A Very Nice Summer!

Well summer is moving right along. We are at the end of July and school starts in a month. Jessica, Jack and I just returned for a week camping trip. We went to Lake Havasu. We had a great time.  Joey stayed home with daddy, the babysitter and Grandma Janet. From what they told me, he did great. He stayed up late at night with Grandma. Grandma can't stand hearing him cry, so they waited till daddy got home before putting Joey to sleep. He ate and slept really well. I missed him a lot. Nice to be home. We leave on another family vacation for 4 days with my sister and her family this weekend. Joey and daddy get to go on this trip.

Beginning in July I decreased more of his meds. He should be off his meds completely by Sept. He starts his Neuro Suit therapy again in Aug. I am so excited. I know he will do great. When he is done with that 3 week/6 hour a day session, we have one last summer camping trip and then Joey starts school. 

I posted more pics on dopshots. Well that's about it for now. Not to much else going on.

A friend from my support group posted this on the support group blog.

 

      

 

You know you have a child with special needs when...

by Carol AnCel

• You compare ER's instead of grocery stores.
• You compare your child's oxygen saturations.
• You view toys as "therapy".
• You don't take a new day for granted.
• You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
• The clothes your infant wore last fall still fit her this fall.
• Everything is an educational opportunity instead of just having plain old fun.
• You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
• You also don't mind if your child goes through the house tooting a tin whistle.
• You fired at least 3 pediatricians and can teach your family doctor a thing or two.
• You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
• You have been told you are "in denial" by at least 3 medical or therapy professionals. This makes you laugh!
• You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
• You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
• Your vocabulary consists of all the letters OT, PT, SP, ASD, VSD, IFSP, etc.
• You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over with.....you waited 8 months to get it.....and besides, no one else 
  will be there!
• Fighting and wrestling with siblings is considered PT.
• Speech therapy occurs in the tub with a sibling.
• When potty training is complete, you take out a full page public notice in the Washington Post.
• When the Doctors/Specialist/ Hospitals etc. all know you by your name without referring to your chart.
• You keep a daily growth chart.
• You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
• You phone all your friends when your child sits up for the first time, at age two.
• With a big smile on your face you tell a stranger that your four year old just started walking last week.
• Her medical file is several inches thick and growing.

My Birthday Party............

Hi All,

On July 5th, my mommy had a birthday party for me and my daddy. It was so much fun. All my friends and family came.  I got to eat cake and stay up late. It was a lot of fun.

So now, my mommy is getting ready to go on a vacation with my sister and brother. My brother is at skate boarding sleepaway camp. Mommy picks him up on Saturday and then she leaves Sunday for Lake Havasu. Daddy, Brianna and Grandma Janet are going to take care of me.

On another note, I am doing very good. My head control is close to perfect. I'm not rolling around the floor like my mommy wants me too yet (why when she'll hold me if I cry loud enough). hee hee hee I am having issues eating. I haven't had to have anything put in my g-tube for over a month now, so that's good. However, I don't like opening my mouth to eat anymore. Of course, I'll open my mouth to eat applesauce, yogurt, ice cream and any sweet food, otherwise I'm making it very difficult for my mommy to feed me. I'm just aware enough now to know what I like and I don't like. I have become very picky. My mommy is starting to get worried, because if I lose more weight then she'll have to tube feed me again and I'll never get my tube out. She should just feed me junk food all day and I'll eat. hee hee hee 

My mommy asks for some additional prayers when it comes to my eating. She has enough to worry about. I'll see what I can do to help her out. hee hee hee

Bye, Bye for now. 

New Pictures Posted

I posted new pictures on the other website. 

www.dropshots.com/fightingjoey  

There are pics of Jessica's 5th grade graduation and pics of us at the beach today.  

Joey's 3rd Birthday

Yesterday was Joey's 3rd b-day. I thought it would be emotionally painful. It wasn't for me. (Jeremy it's a whole other story.) I know Joey is not a typical 3 year old, although I don't look at him so much anymore like a disabled child. I see a child who can't do a lot of things and I know how much more it is physically and emotionally to care for him, but there is just something different (better) on how I see him. The new year, the new house and the changing of therapy and starting school in the fall has made it feel better. I sang Happy Birthday to Joey all day. He loved it. He laughed every time we sang. Almost like he knew (although I don't think he knew at all). I feel that this year of being 3 is going to bring many great wonderful changes.

So thank you to everyone who someway or another wished Joey a Happy Birthday! Whether or not he knew, I did and it made things good.

Thanks Again 

Graduation and Birthday

Today is Joey's last day of therapy at the clinic. We have been going to the clinic since the accident. It is a bittersweet moment. I am glad that we don't have to drive to North Hollywood (20 minutes) Monday thru Friday anymore and then to Santa Monica (30 minutes further). I have put a million miles on my car this last year and a half. I only got my Expedition right before Joeys accident and have 40k miles on it. On the other side, it is sad because that has been our life for a year and a half. We have meet great people. Joey has accomplished a lot. Also, because he is three, his therapy is no longer paid for. The school district takes over and he only gets 1 hr each of PT and OT a week compared to the 7 hrs the state pays for. So now I get to fight with the insurance company to see how much therapy I can get from them. It is always hard to switch from one therapist to another. The new therapist and Joey have to take time to get to know each other and this is very frustrating to me. I feel that I have to teach the therapists what to do with Joey.

Joey's B-day is tomorrow. Unfortunately , I won't be around to celebrate. I have to finish up my fitness certification this weekend. However, on July 5th we are having his b-day party. So I have been planning this HUGE party and am almost done. I have also been training a lot to get certain certifications for our Krav studio. One which is to teach children. So on top of everything I am doing with Joey, I am also putting a childrens program together at our studio. 

Jessica and Jack are out of school for the summer. That is nice. They have been swimming a lot and have had friends over playing. We have a few camping trips planned and the older kids go to sleepaway camp in August.

It never stops amazing me how life changes so quickly and how at one moment life is calm and the next second it is chaotic.

So Much Going On...............................

Well life has been busy at the Stafford House.  Since my last update, we have moved into a new house. Mommy and Daddy are still unpacking. I have my own bedroom and therapy room. My brother also has his own. YAY! Our backyard is like a park. My doggies love it. 

In the beginning of May I started the HBOT. That has helped a lot. I think my eyesight is starting to come back a little more. The HBOT doctor noticed that my left eye was focusing a lot. I guess my mommy can't really tell until I can track objects, but something is going on with my eyes. I also have not used my g-tube for water or feedings or for that matter anything in about 3 weeks. My mommy has also decreased almost all my meds. I am only on a little of Vallium once a day.

Other exciting news, I start pre-school in the fall. I will be going three days a week and will be getting my therapy at school. However, it's not enough therapy and so my mommy will have to pay for additional therapy for me a couple times a week. Insurance doesn't cover a lot. I will begin the suit therapy again in Aug. for three weeks. Hopefully they will get me to crawl and sit and stand by myself for a little bit.

Well that's about it for now. You link on the sidebar link that say My Pictures to see pics of me.

Happy Summer Time.

Welcome to my New Blog

My mom has started this new blog because it was hard for her to post updates on my other website.  So all my updates will be posted here and my photos are posted on www.dropshots.com/fightingjoey