Sunday, December 20, 2009

Family Video

I made a photo book for my mom for Hanukah, but didn't think it would be delivered in time. So I took those pictures and made this video. My plan was to give her the cd of the video and inform her about the book. Well to my surprise the book came in on time. I still wanted to show everyone the video, however I forgot it. So here is the video I made for everyone to see.





Thursday, December 17, 2009

Have We Hit a Plateau?


It has been 3 1/2 months since we have been back from China. We were told that we would see the full extend of the results from the Stem Cell therapy within the first 3-6 months after the treatment. Joey has gained so much from the SCT. His vision has improved greatly. He has gained a lot of it back, however he still has a lot of vision improvements to go. His overall muscle tone has decreased. This is huge because his muscle tone is what stops him from doing so much. He eats much better and is more cognitively aware. He can sit independently for 20 seconds without being prepped first and can sit up to a couple minutes after being prepped. Before it was only about 30 seconds after being prepped. His vocalization has also increased. He says more words and phrases and will hold a conversation with you. His conversations are like having one with a baby. He mimics and googoo and gaga's. It is very cute. So this also has improved a lot. However with all this being said, I think Joey could have hit a plateau. I could be wrong because I do see him all the time and maybe I just can't see it. I don't know. I don't know what to do anymore with Joey. I feel like I have done so much, yet there is still so much I can do. I am frustrated, because I don't have the funds or the time to do it all.

I am going to take Joey to Costa Rica in April for another round of Stem Cells. After that we are kind of at a stand still. I guess I'm so use to running around with Joey that maybe we just need a break, but I don't want to miss out on giving Joey what he needs. The more therapy the better off Joey will be when he is older. I am looking into ABM therapy, but just in the beginning stages of research. Joey will be getting his wheelchair soon and then I will need to get a mini van with a ramp. This will save my back a ton. Insurance and Medical denied Joey his gait trainer (walker). We are still fighting with them. I am going to have the school district help out. Hopefully we can get him walking around the neighborhood soon.

So I was looking at some pictures of the family before Joey's accident. Boy did we look like a happy bunch. There is a light in our faces that have since vanished. My New Years resolution, besides the normal weight lose one, is to bring the light back to our faces. So much of that is personal within each one of us, so I figured if I can work on my light, then the rest will just come. I don't want to be the sad family that has the disabled kid, and poor us. I want to be the family that other people wish they could have.

Well that's it for now. Next week everyone is out of school and off of therapy. We are going to do some spring (winter) cleaning. Eat cookies and have some hot chocolate near the fireplace.

Happy Hanukkah to my peeps and Merry Christmas to my other peeps.

Tuesday, December 8, 2009

What We Take For Granted!

Everyday we wake up and get out of bed, get dressed, eat breakfast and start our day. What we don't think about when we wake up and get dressed and eat are how we do this. We just do it. Every morning when Joey wakes up and stretches, he has to think very hard which muscles and tendons and ligaments and nerves to activate to stretch. He also has to fight past the natural reflexes the brain wants to do to be able to stretch. Then to talk and eat and move around he has to think hard and fight against his body to do these things. Eventually just like the typical us, he is able to do some of these things without thinking. He has learned to stretch without thinking to hard and has learned to laugh without thinking at all. But he still has to concentrate hard when talking and seeing and eating. However, since the stem cells, things are coming easier. One of these things is eating. When we eat, we move our tongue side to side and front to back and up to the roof of our mouths. As babies we only moved our tongues forward, called thrusting. This is what Joey has been doing for a long time. He does move his tongue side to side, but still thrusts it forward. I have noticed over the last several weeks that he is not trusting his tongue anymore. He has concurred this reflex. This is HUGE! Because of this he eats more, eats faster and eats more effectively.

He is learning new things everyday. A lot of his baby reflexes are starting to diminish. This is the beginning to an incredible recovery.

Way to go Stem Cells! Whoo Hoo!

Saturday, December 5, 2009

Energizer Bunny......Keeps Going and Going!




I feel like an Energizer bunny lately. We keep going and going and going.

Monday and Wednesday, Joey went back to school, then had therapy, then off to work for me.

Tuesday, Joey had a Neurologist appt. This was a new doctor we went to and he is great. He recommends that Joey receive more therapy. He is writing a letter to his pediatrician and to the school district requesting more therapy. He doesn't think Joey needs any meds and is doing great.

Thursday, Joey had two doctors appt's. First we visited his Orthopaedic doctor. I was very nervous about this appt. because he was going to have an xray done on his hips and back. It is very common for kids like Joey to have scoliosis and for their hips to be out. Well good news, the doctor said Joey was PERFECT. His hips are in socket and his back is pin straight. Yeah! Yeah! Yeah! Then we discussed new AFO's for Joey. For those of you that don't know, these are braces that keeps his tendon's, ligaments and muscles in his calf's lengthened. Well the last pair he had he hated, so the idea is now to get him either botox or phenol injections first then get new AFO's for him. His doctor doesn't do these injections, so I now have to contact another Ortho in UCLA who specializes in this for CP kids. After this doctor appt. Joey had therapy. He did great in therapy. He is really starting to feel his arms and be aware that he has arms again. WHOO HOO! Then to his next doctors appt. I took him to a Neuro Optometrist. He did some tests to see how well he can see and which eyes and which parts of his eyes he is seeing with. It was determined that he sees only with his peripheral vision. However his right eye is focusing a lot, which means he does have a bit of normal vision in his right eye. So Thursday's doctors appt's were all really good.

I guess this means Stem Cell Therapy WORKED!. He is regaining his eyesight, he has better head and trunk control and he is starting to use his arms more. AND it has only been 3 1/2 mos since we have been home. The research and doctors say we will see results up to 6 mos after the treatment. I can't wait for April when I am going to take Joey to Costa Rica for another round of SCT.

We then decided to have a little fun and take the kids and Grandma Janet to Disneyland. Jessica and Jack decorated cookies, Joey ate everything in sight and we then concurred all the rides. It was a lot of fun. All the Christmas lights and decorations were out. Everything was very festive. Today, Saturday, I took a spa day with friends and got my hair done. Jeremy decorated the inside of our house. we now have a fire in the fireplace and we are eating sundaes.

Ok that's all for now. Please keep up the prayers and thoughts for more improvements from the SCT.

Thank you all for thinking of us.


Tuesday, December 1, 2009

Today Was A Good Day!

Today was a good day, a great day. Boy did I need this.

We went to a new neurologist today. Well my past experiences on visiting neurologists have not been good. These are my least favorite doctors. They seem to have the worst bedside manner and to grieving parents, they just know how to break your heart. Today I met a great Doctor, a great neurologist. He did a full examination on Joey. He tested his eyes briefly and did say that he is tracking. (I visit the Neuro Optometrist on Thursday) So to make a long story short, he doesn't feel Joey needs any meds for his spasticity. He just needs more therapy. Yes more therapy. He is writing a letter to Joey's pediatrician and to the school district requesting more therapy time. He then coached me on the conversation I need to have with Joey's IEP team. I really liked this Dr's way of thinking.

We then went to physical therapy. He did really great. His head control is awesome and he is crawling with assistance. He is also sitting up great too (of course with assistance also).

I am very proud of him. Way to go Joe.

Sunday, November 29, 2009

This Says It All

The following is a article that was posted in a Sydney newspaper. People will ask how it was when Joey had his accident. This says it all about the beginning of our journey with Joey.


By Dr Steve Walker,The Daily Telegraph,November 26, 2009

    A river of tears for children lost


    IT WAS another hot afternoon in Sydney. The sort of weather that we have come to associate with children drowning. They don't understand that pools are dangerous - only that they are fun and offer respite from the heat. We have been to so many drowned children the last few summers. A few of them survived, but a lot did not. They are the jobs we hate most.


    Less than an hour to go until the end of the shift and it is starting to look like that will be it for the day. A case comes up on the triple-0 screens: "Toddler found unconscious in pool. Not breathing. Frothing from mouth. Father doing CPR."

    The location is only a few kilometres away. As the four of us (pilot, air crewman, paramedic and myself) walk out to the helicopter, we are all thinking the same things. Not another one!

    We are airborne in a couple of minutes, and the location is just a few minutes away. A few minutes to think. How long was the child missing before he was found? Don't know. How well can the father do CPR? Don't know. But these factors will largely determine whether the child will live or die.

    We run up to the ambulances and then see people waving and calling out to us. Down the side of a house and into the backyard. It is always the same. A small child lying motionless in a puddle of water beside the pool. Sometimes a little girl, but more often a little boy. Not moving. Not breathing. Frantic parents crying.

    The paramedics are now doing the CPR and are putting an oxygen mask on the boy. I observe white froth at the mouth, which means some water has gone down into the lungs. I kneel beside him. He is pale - almost white. And cold. Very cold.

    We quickly dry the child, attach a heart monitor and stop CPR so we can see if the heart is beating. Nothing. Just a flat line.

    Continue CPR. One of the paramedics carefully puts a small plastic tube down into the child's lungs so that we can administer oxygen more effectively. Not easy to do with all that froth. Nor with the distraught parents looking on. Not easy at all.

    We need to get a needle into a vein so we can give some adrenaline to try to restart the heart. Another paramedic uses a cordless drill to insert a thick needle into a bone in the child's leg. From here drugs will quickly reach the heart. It looks brutal but the child is beyond feeling anything.

    A dose of adrenaline and we wait for the CPR to pump it round to the heart. I notice more paramedics and police arriving. The police look young and are visibly shocked - perhaps their first drowning?

    Some children are standing around. They look frightened but look too young to fully understand what is going on.

    The father keeps asking what is happening and is he going to be OK? How do you say "I don't think so"?

    Still a flat line on the monitor. A second dose of adrenaline and drug to try to stimulate the heart. More CPR. And we wait. I can hear the parents screaming and one of them seems to be blaming the other. I know that the guilt and blame will endure for days, months and years to come.

    Still no response. A third dose of drugs and more CPR. I have never met most of the paramedics I am working with, but we are working well as a team. Everyone is operating well outside their comfort zone.

    We stop CPR again. Still nothing on the monitor. How long now? Ten minutes since we arrived. Plus five minutes for us to get here. Plus however long he was in the water before he was found.

    What now? We have tried everything and nothing has worked. We talk quietly among ourselves. At some point hope has to give way to futility and we are now very close to that point. How do you tell the parents that you are sorry but their boy is dead?

    A fourth (and final) dose of drugs and more CPR. We wait and watch. Something shows on the monitor as the heart finally starts. Slow and erratic - please don't stop.

    One of the paramedics can feel a strong pulse and other monitors tell us blood and oxygen are now flowing around his little body. But it has taken a long time for his heart to start - was it too long? Apart from a pulse, the boy shows no sign of life. We wouldn't expect anything else yet. It is far too early for him to wake up. And he possibly never will.

    We transfer the boy on to a stretcher and out to the waiting ambulance. Over short distances the ambulance is faster than the helicopter. I dial the "Batphone" (an emergency phone which is always answered immediately) at The Children's Hospital at Westmead so they can prepare for us. Even through the phone I sense the thoughts of the nurse - not another drowning!

    A 10-minute ride in the ambulance. The heart keeps beating strongly.Not much else to do now. I contemplate a life lost and a family in grief. Why does this keep happening over and over again?

    We arrive at the hospital. Perhaps 20 staff waiting in the resuscitation room. We hand over care to them and then start packing away our gear. I notice the parents in a corner. The mother is sitting crying while the father paces around in anguish and looks like he will collapse. They face a long wait.

    They are told things are very serious, but there is a chance. There are no tests that can predict the future. Only time will tell. It will probably be several days before they know whether he will live or die. And if he lives, longer still until they know whether life will be good. Will their boy still be able to walk and talk and play? One hell of a wait.

    After we have finished, all the paramedics involved join us at the helicopter base behind the hospital. There is a mix of older, experienced paramedics and younger officers for whom this was their first drowning. Sadly it will not be their last. After such a case it helps if staff have an opportunity to wind down and discuss what they saw, did and felt.

    They need to understand this experience will live with them for a long while to come and that it is quite normal to be affected by it.

    At home that night I lay awake, replaying what happened. I hope the boy will make a miraculous recovery. I think of the parents keeping a bedside vigil throughout the days and nights ahead.

    I visited the child in hospital several days later. He has lived but has brain damage.

    When people hear of a child drowning, often their first thought is to blame the parents and to think that they must be irresponsible for this to have happened. Perhaps this belief is a mechanism that helps reassure parents that such a fate will never befall them. But this isn't usually the case.

    I met the parents several times over the next few weeks and they seemed like good, responsible people. Dad had worked that day and had come home to look after the children so Mum could get a few hours sleep before she worked a night shift.

    A normal family with both parents working and a few kids - like millions of other families around the country.

    It can be difficult to supervise a family of kids - they are so quick and you can't be everywhere. This tragedy arose from a momentary oversight, not because of bad parents. It can happen so quickly.

    There are always a lot of victims when a child drowns. Someone will feel responsible for years to come. Marriages will often end in divorce due to the intense guilt and blame. Siblings will miss their little brother or sister, they will struggle to understand what happened and they will wonder why family life has forever changed.

    And to anyone who thinks this can't happen to them, please understand that the parents of every drowned child once believed this too.

    Dr Steve Walker is a CareFlight emergency physician

    Saturday, November 28, 2009

    Thanksgiving Weekend!

    I have to give so much thanks for so many things in my life. There is really nowhere to start. Before Joeys accident, you really do just take everything for granted. You say you give thanks, you really feel you mean it, but you don't really feel it. Boy do I feel it now. I give thanks to my friends and for all that I have, but I especially give thanks to my family. I'm thankful for the chance to have a second chance with Joey and with my kids and husband. To really evaluate what's important in life and not fret over the little things.

    On Wednesday I left with my husband and kids to go camping with our best friends. There were 7-8 families. We had the most wonderful Thanksgiving feast, played games and probably drank to much. Joey did great for the fact that he doesn't really like camping. The dog did exceptionally well. This was his first time camping and he loved it. We got home today (Saturday) and started to unload the RV. It will a few days to completely empty the RV and clean it. It was another great Thanksgiving trip.

    This next week will be very busy for Joey and I. Joey will visit the Neurologist, Orthopedic and Neuro Optometrist, on top of going to school and doing his 14 hours of therapy. I need to finish my Holiday shopping and get myself back to the gym.

    Ok that's all I have for now. I'm tired and going to bed. Goodnight all.

    Thursday, November 19, 2009

    Things to Know About Me....

    Here are somethings I want you to know about me:

    1. I am not stupid, I am wounded. Please respect me.

    2. Come close, speak slowly, enunciate clearly and give me more than 10 seconds to respond. It could take me a couple minutes to find my words.

    3.Be as patient with me the twentieth time you teach me something as you were the first.

    4. Approach me with an open heart and slow your energy down. Take your time.

    5. Be aware of what your body language and facial expressions are communicating to me.

    6. Make eye contact with me, I am here -come find me. Encourage me.

    7. Please don't raise your voice-I'm not deaf, I'm wounded

    8. ouch me appropriately and connect with me.

    9. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)

    10.Teach me with monkey-see, monkey-do behavior.

    11. Trust me I am trying-just not with your skill level or on your schedule.

    12. Do not assess my cognitive ability by how fast I can think.

    13. Speak to me directly, not about me to others.

    14. Cheer me on. Expect me to recover completely, even if it takes twenty years.

    15. Trust that my brain can always continue to learn.

    16. Remember that i have to be proficient at one level of function before I can move on to the next level.

    17. Celebrate all of my little successes. They inspire me.

    18. Focus on what I can do rather than bemoan what I cannot do.

    19. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.

    20. Remember that in an absence of some functions. I have gained other abilities.

    21. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.

    22.Be protective of me but do not stand in the way of my progress.

    Wednesday, November 18, 2009

    Good Day for Joey!

    Today was a good day for Joey. We are almost done here in Oceanside. 2 more days of therapy. He is doing really great with the therapy. There isn't much to it, he just has to lay on a motion table while listening to music and watching a light turn off and on. When he gets fussy from laying I sing and sing and sing. When we leave we take the light box with us and finish 18 more days at home. With this therapy you don't see results right away, it can take several months. The results we are looking for is improved vision and cognitive awareness. However, I have already noticed a change in his vision. He is definitely seeing something now. I am totally convinced. Now, it is hard to tell if the improved vision is from the Stem Cells or this Sensory Learning Therapy. I believe that it stems more from the SCT and that this therapy is just helping them fire up faster.

    Since we have been in Oceanside, one of Joey's therapist has been treating him. She has really got him loose and he is also starting to feel his arms more. He is just barely starting to use this protective reflex. He is also baring more weight through his arms when sitting and in quadruped. He is really doing great with Trish. I just wish she was able to work with Joey more often, but she lives to far away. So we are going to take what we can get.

    Today Joey and I took a walk down the beach to the pier, then down the pier. At the end of the pier there is Ruby's restaurant. Joey and I shared a chocolate shake and the sunset. The walk was extremely hard because I through my back out a couple of days ago. I have been doped up on Advil and Tylenol. I also have one of those patches on my back. Can't wait to go to bed so the pain will ease up.

    Once we get home in a couple days, I have to start packing the RV for our Thanksgiving trip. The week after the trip Joey goes to the Neurologist, Orthopaedic, and Neuro Optometrist. We are also still waiting for Joeys gait trainer (walker) and wheelchair to arrive. I am starting to research my options as far as a handicap mini van. Hoping this will help with my constant back pains. Also I have decided to take Joey to Costa Rica in April for another round of Stem Cell Therapy. This trip will only be a week long and I will be going with my girlfriend Pam and her daughter Mackenzie from Colorado. I'll fill you in more about this trip in the future. I am also working on some fundraising for this trip. So you all will hear from me soon. Hee hee hee

    Ok I think that's it for now. Have a great night all.

    Friday, November 13, 2009

    I Spy With My Crossed Eyes...........................

    I think we have figured it out. Figured out what therapy Joey needs to regain his eyesight. We still can't tell exactly how much Joey can see, but he is seeing much better. He is tracking more, and focusing a lot more on what is in front of him. I believe it is the Stem Cell Therapy with a little help from the Sensory Learning Therapy we are doing now. I know a child who regained her eyesight from the Sensory Learning Therapy. I also know many kids who have regained their eyesight from the Stem Cells. I see that Joey is responding to both. I am planning on taking JOey to Costa Rica in April for more Stem Cell Therapy. Keep your fingers or eyes crossed. hee hee hee

    Thursday, November 12, 2009

    OK, Where to Start!

    Yesterday after Joey's therapy session, which went great, Joey and I had lunch together and then back to the condo for a nap. Then off to Disneyland for the rest of the afternoon. We met my sister's family there. We took the kids to California Adventure. Joey went soaring over California and went target shooting in Toy Story ride. We then went to Goofy's Kitchen for dinner. Joey met Chip n Dale, Goofy and Pluto, Ariel, Minnie Mouse and the Genie. He did the twist with Goofy and Rex. He was loving it. So glad I took him.

    His arms stayed so loose after his session of therapy on Tuesday. Trisha his therapist is going to continue to do therapy everyday for the rest of the time we are here. We are trading services. I'm so excited, because she does miracles with him. Today we are headed home. Joey has therapy from 1-3:30 and then I have a tupperware party tonight. Then we will be back to Oceanside first thing in the morning.

    Ok moving on. I am starting to figure out the therapies that work best for Joey. Physical therapy being the staple and the state paying for most of it, here are the others that Joey always needs to do, but insurance doesn't pay for it. The following therapies are paid for out of pocket: HBOT (Hyperbaric oxygen therapy), SCT (Stem Cell therapy), Vision therapy, Craniosacral therapy, NeuroSuit therapy, Tomatis therapy, Sensory Learning therapy, Equestrian therapy, Accupressure, and I'm sure there are more I just can't think of right now. These therapies will cost me approx. $48,000 this year. WOW I need a couple more jobs. The hardest part is that I know all these work for Joey. He needs them all. But what to do, I don't have even half of the money to pay for these. So hard to choose which therapy is most important to do when you know they all work wonders.

    So that is the story of our lives right now. I know things will work out.

    Have a good day all.

    Wednesday, November 11, 2009

    Good Day After All!





    Yesterday, Tuesday, was a good day after all. Joey is doing good in therapy. His eyesight is coming around. WHOO HOO! Still hard to judge how much though.

    After therapy I headed to Joey's old therapists house. I forgot how much I loved her working with Joey. She knows exactly what he needs. Joey and her just fit perfect together. When she was done, his body felt like a different boy. It makes me a little said though that she is unable to work with him more often. We live to far away from each other.

    Funny story to tell, but while she was showing me around her house, we noticed her tenant who lives in a mobile home on their property was in a panic. Well a little more info on the tenant. Trisha says she a bit crazy, very nice, but has issues. She is on meds for being schizophrenic and has a panic disorder. So when we heard her in a panic we didn't know what to expect. Was she having an episode or was it something more serious. Well it was something more serious. Her little dog got a fish hook stuck in her paw and tongue. Poor baby. So while Trisha took Joey and did therapy I rushed the dog and tenant to the emergency vet. The whole trip took about 1 1/2 hrs or so and I drove and sat listening to the woman tell me her whole life story. In the end, the dog is fine. The tenant is calm and everything worked out well.

    When I got back to Trisha's house, she was just finishing up with Joey and then her kids came home and we bounced on the trampoline for awhile. BOY does Joey just love the trampoline. He was laughing hysterical. Hopefully we will see her a few more times before when are down with Oceanside, and maybe even make the drive out to her once in a while. I really love what she does with him.

    Well thats it for yesterday. Today more therapy this morning then off to Disneyland with my sister and family.

    Tuesday, November 10, 2009

    In A Funk!

    Not Joey, ME! I'm in a funk. I noticed about every 6 months or so I get into a funk. A depressed state. I don't know if it's the holidays or the exhaustion of always going or what.

    Jeremy and I took the older kids to Disneyland on Sunday. We had a great time. Although the whole time I couldn't stop thinking that Joey should have been with us running around in a Disney costume. That I missed out on having a third kid. Missed out on baseball games and toy trucks. Missed out on play groups and yelling at Joey to get down from the tree or watching him put on boxing gloves that are to big for him and fighting with his brother. Or that I missed out on him wanting to wear his Halloween costume for months after Halloween is over. And missed out on him wanting to run in the sand and put his toes in the ocean or jumping into the pool over and over again because he likes daddy catching him. I don't hear the "I Love You Mommy" because he loves me or because he just wants to say it. He doesn't call my name when he's scared. He doesn't smile at me because he sees me making a funny face or reach for me for a hug. I have even missed out on the not so fun stuff like potty training or food thrown on the walls or crayon on the walls and markers on the couch. Or the excitement of Santa Clause and the Tooth fairy, or Easter egg hunts. Unwrapping of Birthday, Xmas and Hanukkah presents. Instead of saving money for family vacations, we spend every dime on the next therapy or medical supplies or equipment to help him walk or stand or sit. I don't do PTA or help in the kids class rooms because I'm at therapy. I miss football games and trips out with friends or to Las Vegas with husband because I'm at therapy. I have to count his calories and make sure he is getting plenty of water. No funny flavors of ice cream because that's what he wants, no blowing bubbles with his straw in his milk. No juice boxes or chocolate because it is something he wants.

    What makes this even sadder is that it will always be like this. Jeremy and I will always miss out on what a typical child or teenager or adult would do when it comes to Joey. I will always be taking him to therapy, buying him therapy toys, not toys he is asking for.

    Yeah Yeah I know people say be happy he is alive or be happy for what you do have or be happy he can do this or that. BUT it is hard to always be happy over these things. People say God will provide or God has sent you on this path for you, for us to learn and love. Well I want OFF of this path. I WANT a typical child. I don't want to change diapers anymore or feed my child with a spoon in a special chair because he can't sit.

    I see how people get fat. I so don't want to diet. I am about 20lbs to heavy and all I want to do is eat and eat. I don't have enough time or energy in my day to always think about myself. Like everyone else I have the normal household stuff, work and on top of it a disable child. Not many people can understand where I'm coming from. Only those that live my life and you know who you are. You are my other family, my support team, my shoulders to cry on and my new best friends. Unfortunately but thank god I have you on my journey with Joey. I love you guys.

    I want to say life is good, BUT it is not always good. Right now not so good for me.

    As for Joey he is kicking butt. I love you son.

    Ok off to THERAPY.

    Monday, November 9, 2009

    Always Some Kind of Therapy

    This morning I woke up at 4:45am and got on the road at 5:20am to head down to Oceanside. The drive would normally take about 2 -2 1/2 hours depending on traffic. Well at 5:20 am it only took me 1 1/2 hours. Joey's therapy then started at 9am. He is doing Sensory Learning therapy.

    This therapy consists of Joey laying on a motion table while listening to music and looking at a colored light slowing going off and on. We will be at the center for 12 days then will take the light box home and finish the 30 days. Over the 12 days, the decibel gets higher and the colors change. This therapy will help stimulate his eyesight. It will also balance him out more and will increase his vocalization. I am excited to see how he does.

    So I rented a 1 bdr condo on the beach for my stay. I got lucky and got upgraded to a two bedroom penthouse, although really what do I need a 2 bdr penthouse for. The condo is very nice, the weather is perfect (about 73) and the beach is awesome, but I'm lonely. Joey and I took a walk down the boardwalk and up the pier. It was a nice walk, but I'm lonely. I wish I had someone to share it with. Oh well, time will go by fast and I am going to keep pretty busy this week.

    Well that's all of now. I'm tired and going to bed now.

    Friday, November 6, 2009

    Good Morning To You

    Joey woke up this morning and said "Good Morning To You". His "Good Morning" was very clear, the "to you" was not as much. The SCT has really helped Joey's speech. He says a lot more words. He is doing awesome.

    On Monday we start a 30 day Sensory Program. We are headed down to Oceanside for 12 days of in clinic therapy. The therapy involves auditory, motion, and lights (for vision). He has a hour a day of this. So yes the rest of the time we will be a little bored.

    I rented a 1 bed condo for pretty cheap, it is right on the beach. I got a call yesterday from the owner saying that she has to rent it to someone else for 3 months. So she has upgraded us to a 2 bdr penthouse for the same price. Whoo Hoo! So if anyone wants to come and visit I have plenty of room.

    After the 12 days we will be sent home with the light box to continue the vision part for 18 more days. I'm praying that with the SCT helping with his vision, this will really push it over the edge. But then again I will take any improvement.

    In December, Joey will start HBOT again for a round of 40 treatments. Then we will be back to a regular schedule until April or so.

    UHHHHHH! I'm tired just thinking about it.

    Have a Wonderful Day Everyone.

    Thursday, November 5, 2009

    WHY WAIT?

    So for everyone that reads Joey's blog, this post is not directly about him.
    So if you don't want to read it click off NOW.

    I was talking to my mom today and the question (or maybe more like comment) was brought up. WHY NOT WAIT? Ok let me go back a little and explain.

    I am entertaining the idea of taking Joey to Costa Rica for stem cell therapy. During my constant research on SCT I have seen that the more frequent and the closer together you do SCT the better results. I know many people are saying to themselves, "BUT, you haven't really seen a lot of results with Joey from China? So why Costa Rica?" Well yes we have seen good results with Joey. His eyesight is so much better, his cognitive awareness and muscle tone is much better and it has only been 2 1/2 months. Why Costa Rica, well I know two children that have gone and they have had great results like Joey. Costa Rica is also only 1 week instead of 4 weeks. The cost is relatively the same. I also don't need a second person to help me. I can go by myself.

    So the comment or question is why not wait till the US is doing it? Well first of all nothing is guaranteed. The US has not began trials on donor cells yet. Who knows when they will begin. Also who knows how long the trial will take (2-5 years). Then, what is their protocol on SCT going to be. Also what will be the cost. Not free, Insurance won't pay for it.

    So why wait for something that is not guaranteed when I can do it NOW and help Joey now. I don't believe SCT will bring the old Joey back, however I do believe that he will live a much better quality of life.

    So please everyone, I would love to hear your opinions. Positive or Negative. Give it to me.

    The Journey is Everything!

    Sunday, November 1, 2009

    HALLOWEEN SUCCESS

    What a great Halloween and Birthday. The day started out with a parade at Joey's school. We then had our friends and family over for some Halloween fun. We had lots of SUPER HERO'S and JAMES BOND to protect us from the scary MONSTERS, HANNAH MONTANA/MILEY CYRUS performed and the DINOSAUR roamed the yard for predators. The GNOMES looked great as yard decoration and the HIPPIES just chilled out and enjoyed the punch and brownies (hee hee hee). The BUMBLE BEES buzzed around the FLAPPERS and everyone had a great time. We had tons of snacks, punch for the kids, pizza for all, and alcohol for the over 21 crowd. After some time eating and socializing, it was time to do a little trick or treating. Most of the group went trick or treating while some of us stayed back for conversation and alcoholic beverages.

    We had a great day. However last time I do a Halloween Party. I'm exhausted. hee hee

    Monday, October 26, 2009

    Almost 2 Months Post China

    We are almost 2 months post China. WOW time flies fast. We were told at the beginning of our China trip that we will see improvements up till six months post China with the full results and most major results at that six month mark. Some of the other things we were told was that some things will get worse before better, but these are the things that would ultimately improve the most. The other thing I heard is it that the Stem Cells will first improve the issues that is harder for people to see, example; Vision, cognitive impairment, seizures, reflux, etc. When we were in China, right away we noticed Joey's vision improving. We also noticed his body was a bit looser. However he began grinding his teeth even worse then before we went to China. His grinding has definitely gotten better since we got home. His vision and cognition are still improving. He is focusing a lot now. We have a vision test when we go to San Diego for his Sensory Learning therapy. His body is not as loose as it was, but still looser then when we began our journey. He rolls now from his back to tummy, not every often, but he didn't do this at all before. He is also vocalizing a lot more. His 'I love u's" and ' Hello's' are a lot clearer.

    So now I am wanting to go back to do Stem Cell Therapy again at that 6 month mark. I have learned that the more you do it in the shortest amount of time the better results. The MAJOR issues are MONEY and TIME. So I am thinking about taking Joey to Costa Rica this next time. It is only a 1 week trip and about $16,000. I have had three friends take their kids here and they have also seen great results, so I feel good about trying Costa Rica. Also when you make return visits to Costa Rica it only cost $8,000 instead of $16,000. That's a plus. I have some friends going in February and I have talked to one of my friends who is a single mom and we talked about rooming together and helping each other, so husband and kids could stay home. BUT, again the issue is MONEY $16,000. So we will see, if not February then spring or summer.

    We ordered Joey his wheelchair. I'm so excited about getting it. He has gained 3 lbs since China. This is the most he has gained in almost three years. WHOO HOO! except for my back. Boy does it feel that extra weight. I am going to have to start thinking about getting a van with a ramp.

    Otherwise everything else here at the Stafford house is going great. Holidays are coming which means camping with our Best friends and great memories with the whole family.

    WHATEVER IT TAKES! NO MATTER WHAT!


    Friday, October 16, 2009

    Things to Share

    I have a few things to share with you all. First, I made a video for the HUGS Foundation. The HUGS Foundation is a non-profit organization that raises monies to help our kids with therapy and equipment that our insurance doesn't pay for. AND our insurance pays for very very little. This video shows only a very few of the kids in need. There are thousands all over.


    video


    OK, so I also have a pet peeve to share. Of course this had no effect on me until Joey became disabled. I use to be guilty of this also. I'm talking about HANDICAP PARKING. I understand that there are a lot of people out in the world that have underlying medical conditions that are not visible to the public that require the use of handicap parking because they can not walk the distance. BUT, if you don't need to use the parking spot then DON'T USE IT. I will even park in a non-handicap spot if there are other spots that will allow me to get Joey out of the car with plenty of space.
    If you are going to the mall and have issues walking then why are you walking the mall. In that case park two spots over in a non-handicap spot. Leave the spot for someone who needs it for the space to get out of the car or for the van ramp access. IF you can walk the mall then you can walk 20 feet more from the other parking spot.
    Also, DON'T USE the spot just because you have the pass and there is no other spot available close enough, when you don't have the disabled person with you. Just because you have a handicap pass, be respectful for those that REALLY NEED the spot.
    Today as I was dropping off Joey at school there were two people in front of me of which I know both. They both pulled into the last two handicap spots. One child is super mildy CP, she can walk just fine, she is just slightly mentally delayed. The other woman"s child is Autistic with a sister who had cancer. The mom has the TEMPORARY pass which was given to her for her daughter. The daughter no longer has cancer and is in kindergarten. Both kids are physically fine. I on the other hand had to park about 50 yards away on the side of the road. With no wheelchair or stroller had to carry my son to his class room. Both mom's turned and saw me and even said 'Hi". SERIOUSLY, they don't get it.

    IF YOU DON'T NEED THE HANDICAP SPOT, DON'T USE IT. COME ON PEOPLE! URRRRGGGGGGG!

    OK, I feel better now.

    Today I am the mother of a 12 yr old. WOW! Where did the time go. Happy Birthday Jessica. We love you very very much. Have a fantabulous day.

    Sunday, October 4, 2009

    Last Day of Intensive Therapy

    On Friday it was Joey's last day of intensive suit and tomatis therapy. Joey and I spent 3 weeks at the NAPA Center. While Joey worked super hard on his physical and occupational and listening therapy, I spent time with the most awesome group of mom's ever. We discussed our children (all of them) and talked about therapies and life issues. We laughed a lot and cried a little. It was the best time I have had at the center because of this group of mom's. I'm really going to miss them all. Good thing is that because I still go to the center 2x a week I will see some of them here and there. I will keep in contact with the other moms through facebook (gotta love me that facebook).

    Joey kicked A?! today. And of course I forgot my camera this day. Joey walked the best ever in tall kneeling (this is when joey is on his knee's). His therapist Rebecca was holding his hands, but Joey was lifting his knees high. He then was crawling awesome with little assistance from his therapist. She sat in front of him and helped him with his arms, but Joey did his legs all by himself. GO JOEY GO! Then Joey was put in a walker. A regular walker, not like the gait trainer he is normally in. This walker is one that you strap your arms down into and nothing else is supporting you. He did fantabulous. He normally would hate his arms being strapped down and his head would fly back when not supported. He stood up straight and didn't mind his arms being strapped down at all. He walked back and forth throughout the center.

    We had a little going away party this day. We had taco's and cookies and cupcakes for dessert. A friend brought in donuts and another friend brought in a chocolate covered fruit basket. OK, so forget about weight watchers that day. I will exercise extra hard today. I went to Pam and Makenzies condo after therapy for a last goodbye. We took the kids to the beach. You should have seen the two of us moms's pulling these strollers backwards in the sand to get them to the water. Then bent over holding our big kids we put them in the water. Boy did they love it. Then again we trekked the strollers uphill back over the sand to solid ground. I definitely worked off that cupcake. My calf's were a little sore the next day. Oh yeah and somehow I managed to lose my flip flop. OH well, summer is just about over anyways.

    As of Monday Joey is back at school for about a month until we head to San Diego for two weeks for more therapy. Our lives will be a LOT of therapy until about spring time. He gets fitted for a wheelchair on Monday. This is one of those bitter sweet moments. I really really wanted to delay getting a wheelchair for the hopes he will walk sooner then later, then I realized lets not push it. He will walk one day, be PATIENT. The sweet part about the wheelchair is that he will be positioned right and comfortable when we are out and about. It will be a lot easier to move him around. Joey has grown a lot. He is about 33 lbs and is super long. Of course it's going to work out that Joey is my 6 footer and 220lbs when fully grown. ha ha ha

    Well a last good bye to all my new friends and old friends that I spent time with at the NAPA Center. The NAPA Center is definitely a PLACE OF HEALING.

    THANK YOU

    Thursday, October 1, 2009

    End of Intensive Session

    Tomorrow Friday is the last day of Joey's Intensive Suit and Tomatis therapy. Yes Joey has made some great changes. He is able to roll from his back to tummy a bit now. He also can sit on a bench for a few minutes by himself now. His body is a lot looser. He seems to be reaching more with his arms. Because I am with Joey all the time, it just seems like I am watching grass grow. To really see the results, I need others to see him and tell me what they have noticed.

    Besides Joey's great improvements. We are really really going to miss all the kids and mommies at the center. We had a great group of people these last 3 weeks. My sister and her daughter Faith, Pam and Makenzie from Colorado, Jennifer and Gracie from Las Vegas, and Kelly and Savannah from Redondo Beach, Ca. Joey got lucky to be surrounded by a bunch of hot chicks. At least we will be able to keep in contact on Facebook and through our blogs.

    On Wednesday we did an early graduation performance. It was super cute. I have posted the video below.



    Tuesday, September 29, 2009

    Fun Time...................and Therapy!

    We are coming to the end of our 3 week intensive NeuroSuit and Tomatis sessions. Joey has been doing fantastic.


    It is always kind of sad to finish these sessions. We have meet great people here. It is always so comfortable to hang out with others that understand your situation. Our discussions are usually about wheelchairs and drooling and feedings, if our kids are tight or loose today. We talk about how crazy our lives our and about the weather. These are just normal discussions. Nothing out of the ordinary or unusual. We joke about how jacked-up our kids our (our injured and typical kids). We laugh and cry. It is just a great place to be.


    The therapists understand us and our kids. They work great with them. They know when our kids are fake crying or really need a break. They talk to them like if our kids were typical. Our kids respond to them like typical kids. So that brings me to "What is typical and not typical", OK, my kid can't walk or talk or feed himself, but he sure does understand and throws tantrums like a typical kid.


    OK, anyways more about Joey. I took Joey to Disneyland with one of his therapist Kelly and her son Blake, and a friend Pam who is here at the center with her daughter Mackenzie. We had a great time. Joey went on tons of rides including the Matterhorn. That's his favorite ride. This was the best time I have had with Joey alone in a long long time. We spent quality mommy and son time. Then we had a sleepover and Makenzie's condo on the beach. Pam and I stayed up late and had pizza and buffalo wings and talked talked talked. Boy am I going to miss her when she leaves.


    Kelly holding Makenzie and Joey with her son Blake.
    Blake, Joey and Makenzie in front of It's a Small World.
    With Winnie the Pooh.
    Joey with Mikey Cheese hat on.
    Mommy and Joey riding Dumbo.
    Makenzies's mommy Pam put together this montage from Disneyland.



    Joey has responded great with all the therapy over the last 3 weeks. The one thing I really noticed over the last few weeks is that Joey is NOT grinding his teeth anymore. Not once have I heard him. This has been a big thing. Joey has grinded his teeth down to nubs. His body is so much looser. He is sitting much better and for longer. His head control is so much better, close to normal.


    Our next therapy adventure is to Oceanside in November. We will be staying for 12 days. Joey will be doing Sensory learning. This is listening, motion and lights. Then we will finish the 30 day program at home. Then we will take a break through the holidays and start 2 months of HBOT in January and then do another NeuroSuit session in May. WOW, I'm tired just think about it.


    Thank you everyone for your continued prayers and thoughts.

    Love Always

    Thursday, September 24, 2009

    Life is Good!

    Yes, I think life is good. It can be chaotic and crazy and frustrating and physically and emotionally draining, but it is good. My kids are healthy, I have a husband that loves me and a wonderful family that is always there to support and love us. I have a great business with great employees, and I have great friends who are always there when I need a shoulder or a good laugh. Of course, I would love for it to be a little different. I would love not to have to go to a million different therapies, or have to still buy diapers when my son is 4 yrs old, or have to sit and feed him, or carry him where ever we go because he can't walk. But all in all LIFE IS GOOD!

    Jessica, Jack and Joe have started school and are doing great. We found out a week ago that last years grades for Jessica were wrong (teacher error on report card), she ended up getting a 3.5 in all GATE classes. So now I owe her an iphone. That was the deal. A 3.5 GPA and I would buy her an Iphone. Jack started football and is kicking butt. Jessica is cheerleading and planning her 12th birthday party on Oct. 16th. As for Joey it is all about therapy time.

    Joey is 1 1/2 weeks into his 3 week neuroSuit intensive therapy and Tomatis sessions. He is doing sooooooo good. Great head and trunk control. Looser body all around. Great communication. He is my superstar.

    Jeremy and I are just as busy as usual. So we decided to do a triathlon because we had a few extra minutes in our 24 hr day. LOL! We have been training hard. I plan on kicking his butt in the water. He will kick my butt on the bike and run, but as long as I finish I'll be happy. Our business is doing awesome and the house has not fallen down yet. hee hee hee

    Thanks everyone for your support and for help making our life good.

    Here are some pictures of Joey during therapy.








    Thursday, September 17, 2009

    4 Days into Intensive Session

    Joey is doing great. He is 4 days into his intensive NeuroSuit Session and is doing awesome. He is sitting on the edge of a table for about 5 seconds before needing to be corrected with a nudge, he is also sitting on the pony (not an actual pony, the machine is called a pony). He continues to self correct himself when he starts to fall over. He has been working really hard trying to crawl and climb up a ladder.

    Here are some pics of Joey during his session












    video

    Monday, September 14, 2009

    More Intensive Therapy

    Today Joey has started another round of intensive NeuroSuit therapy. The therapy is 5 days a week from 8-2:30 for 3 weeks. We were told to do as much therapy as possible after stem cells to get the stem cells active in his brain. So we will start with the NeuroSuit. Today was our first day and Joey did great. He was very happy and loose. Then when that ended, he continued therapy with doing Tomatis. Tomatis again is listening therapy. As soon as we were done and got in the car he passed out. We didn't even make it around the corner and he was passed out. There are 4 other kids doing the intensive NeuroSuit therapy program. All are girls from 2-4 yrs old. Joey is one lucky boy. My sister is bringing her daughter Faith and my friend Pam from Colorado brought her daughter Makenzie. Makenzie is very similar to Joey as far as physical and cognitive abilities. They look very cute together. I will take pictures tomorrow and post them.

    I am also looking into Sensory Learning program. This will work with his eyes, hearing and balance. I need to get those stem cells to the Occipital lope in his brain to get him to see again. Hopefully I will be able to start him on this in November. Then in January he will start HBOT again. He will do 40 sessions. After all this, we will continue with his traditional therapies. I have to get as much therapy as possible into him in the next 5 months.

    I will post more pics in a couple days.

    Please continue to pray for his recovery.

    Thanks