Sunday, December 20, 2009
Family Video
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.
Tuesday, December 8, 2009
What We Take For Granted!
Saturday, December 5, 2009
Energizer Bunny......Keeps Going and Going!
I feel like an Energizer bunny lately. We keep going and going and going.
Tuesday, December 1, 2009
Today Was A Good Day!
Sunday, November 29, 2009
This Says It All
By Dr Steve Walker,The Daily Telegraph,November 26, 2009
A river of tears for children lost
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!
Thursday, November 19, 2009
Things to Know About Me....
Wednesday, November 18, 2009
Good Day for Joey!
Friday, November 13, 2009
I Spy With My Crossed Eyes...........................
Thursday, November 12, 2009
OK, Where to Start!
Wednesday, November 11, 2009
Good Day After All!
Tuesday, November 10, 2009
In A Funk!
Monday, November 9, 2009
Always Some Kind of Therapy
Friday, November 6, 2009
Good Morning To You
Thursday, November 5, 2009
WHY WAIT?
Sunday, November 1, 2009
HALLOWEEN SUCCESS
Monday, October 26, 2009
Almost 2 Months Post China
Friday, October 16, 2009
Things to Share
Sunday, October 4, 2009
Last Day of Intensive Therapy
Thursday, October 1, 2009
End of Intensive Session
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.
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