Today my mom and dad went to say goodbye to Chris. They leave tomorrow. I stayed home with Gabriel as he wanted to go to the park – it was a beautiful sunny day in London. My mom said Chris was sleeping when they arrived but was very happy to see them when he woke up. My dad also said Chris “looked” sad when they told him they were leaving to go back to Korea. As a matter of fact, there has been this feeling among people that Chris understands more than he is able to convey. It is a subjective feeling - because of inconsistency and inability to communicate, there is just this frustrating question mark as to how MUCH does he understand… that he is able to grasp information from his surrounding environment is a fact, the problem is understanding how much and what he understands.
So I think in a nutshell that was the main point of discussion during a major meeting that took place this past Wednesday with therapists, carers’, administrators and PCT (the funding authority that pays for Chris’ care). Chris and I were at the meeting as well. The general consensus is that yes, Chris seems to understand more than we all think. That breaking through his communication ability seems to be the next big step. He is overall visibly better than last year and the divisive point was his first stem cell treatment at TianTan Puhua in Beijing. Also, a consensus that so far the last treatment at Beike has not resulted in any changes at all.
On this last point I think my view is clear: the stem cell injections are not a miraculous shot that will result in instant improvement. In Chris’ case, the stem cells are still in his body waiting to learn what to do, to pick up function, which will be learnt by the intensive therapy program that I have been trying to implement since we came back… And on this point, it seems everything is finally falling into place now.
In fact, Chris is right now at the peak of therapies since his injury. Never before he got what he has right now: daily PT, finally more frequent and structured SALT, an OT (Occupational Therapist) was brought on board, Music Therapy, activities coordinator, a switch was ordered, etc etc… all provided by the Jacob and fully funded by his PCT. I think it’s the team consensus that he does need this type of input given how much he has improved. I am thrilled. And I am so thankful for the healthcare system in this country… So ALL THIS is now his “bread and butter”, his current needs… the jam on the bread is that on top of all this, Chris got his weekly private SALT, his fortnight private PT who is working along with his PT team, his daily private carer who will spend time one on one going through therapeutic routines, massages, etc. The “jam” on the bread is being funded by the CBMF’s raffle fundraiser.
I think I have not felt this good about Chris’ progress in a long time. Plus I needed some emotional uplifting… Now I think I just need to be patient and hope for the best in the next months…
On the domestic side of our lives, I was able to sort out nannies until the end of August. I have also devised a plan for the summer. Gabriel will attend his old Montessori nursery school from 8 AM to 1 PM. I will drop him off everyday before work and Alcione (our old nanny) will care for him until I come back from work. I will sign him up for football and swimming classes. Gabriel also got annual memberships to the London Zoo and London Aquarium so I think he will be fine. I will need to play it by ear regarding my business trips. With my luck off course I am scheduled to go to Frankfurt the first week after my parents’ departure – but my friend Corinne will sleep over and take Gabriel to school.
Off course there was the option of sending him abroad over the summer, he could have gone to Korea, Brazil or USA. Nonetheless, I vowed never to be apart from him after the three weeks we were apart during last year’s Christmas. I felt sick in my soul. I think Gabriel was also upset by the long separation. This way, we are together and things are structured. I think he needs structure and he needs to stay with his parents nearby. And I need him to survive and keep going – that’s been always the case since Chris’ injury. I cannot live or breathe without our baby.
Please pray for further improvements for Chris. I am so excited and proud of all he has achieved so far and the therapy program in place right now is absolutely outstanding. I just want more and more and more…
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Last week's (great) meeting re: Chris' therapies
Comments
Re: Last week's (great) meeting re: Chris' therapies
by
Debby
on Sat 07 Jun 2008 10:50 PM BST | Profile | Permanent Link
You may think I do not care, after a previous post I made, but I have ALWAYS cared for you and Chris and the rest of your family. I always felt Chris knew exactly what was going on(which is why I was so upset when I wrote the one post right after Christmas). I know you have gone beyond the call of duty as far as his medical care is concerned. I am thankful he has been able to receive 2 stem cell treatments. Thank goodness for his friends and family who hold these charities for him.
I am deeply saddened by the fact your parents can not stay. I just do not understand how that works. As far as keeping Gabriel at home with you, yes, that is a must. Without him, I fear your would collapse mentally. He is what keeps you going. No one should ever be separated from their child. And I feel it is important for him to be near Chris also. I KNOW, that Chris knows his baby son. I pray for all of you continually. I know one day Chris is going to be able to come home(even if it is with a nurse or some kind of help). I know he will eventually walk again. I just have to think this way for all of you. Debby Re: Last week's (great) meeting re: Chris' therapies
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Sue
on Sun 08 Jun 2008 02:57 PM BST | Profile | Permanent Link
Hi Koo and everyone who like me reads this post daily. Earl also understands everything even though his method of communication varies from simple nice to expletives. He watches TV and laughs appropriately. The "problem" is that you tend to forget that he does understand. The latest developments sound encouraging. I envy you the PT and OT etc. all that is long in the past for us, no funding available as he didn't progress fast enough for the insurance company. Good news is that it is summer and Jennifer, his aide, will take him swimming. You are all in our thoughts and prayers. Need a nanny next summer? I'll send my youngest over :) love Sue and Earl
Re: Last week's (great) meeting re: Chris' therapies
by
angela
on Thu 12 Jun 2008 05:54 AM BST | Profile | Permanent Link
i tried to leave a comment yesterday but it didn't go through....
i knew that chris understands more than he can communicate and i just hope his communication skills improve so people can realize that he understands more!!! i'm sure chris is going to miss your dear parents as will you and gabriel. that's lucky that your friend corinne and alcione can help you out with gabriel. i always say but i think you are amazing and good luck with it all. remember, i sent you email asking if you wanted help with your parents' immigration prob because william talked with an immigration lawyer there in london previously. we hope things work out well, and prayers for the whole family! xoox Re: Last week's (great) meeting re: Chris' therapies
by
angela
on Thu 12 Jun 2008 06:11 AM BST | Profile | Permanent Link
not sure if my comment went through...
i tried to leave a comment yesterday but it didn't go through.... i knew that chris understands more than he can communicate and i just hope his communication skills improve so people can realize that he understands more!!! i'm sure chris is going to miss your dear parents as will you and gabriel. that's lucky that your friend corinne and alcione can help you out with gabriel. i always say but i think you are amazing and good luck with it all. remember, i sent you email asking if you wanted help with your parents' immigration prob because william talked with an immigration lawyer there in london previously. we hope things work out well, and prayers for the whole family! xoox |
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