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.

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.

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!

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.

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.

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

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.