So far this week was a week with many talks. On Monday we had a meeting with the rehabilitation doctors, Meg's psycholoog, social worker, nurse and us, parents. Talking about the last 9 (!) weeks . The time since Meg arrived here at Adelante. A lot of things happened, but also still a long way to go. Most probably Meg wil need an electrical wheelchair as she can only use her right arm. I hope we can test if Meg can handle driving it by herself. When we know that for sure we can order one soon.
Such talks are a pull back to reality for me plus a "fight" against the prospections. No one can vieuw in future and ofcourse I know Meg wil never be the same as before, but I do keep my dream of her future as open as possible, not adding any label on her yet. I believe in the strength of visualisation and positive vibes and common sense too, but also Meg is showing huge will to survive and works very hard. I hope she wil surprise many. I humbly ask you all again to pray for full recovery.
On Tuesday in the morning I had a talk with the sales representer of the speaking computer. We adjusted the computer to Meg's possibilities at this moment. Typing is going faster as in the beginning :) In the afternoon the neurologist from the hospital came and checked Meg's reactions. He had an idea to treat her toe and leftarm with Botox to weaken her spasm, I don;t feel right about it. I think there are other options/ possibilities before doing such drastic thing (again). I cannot find any scientifical report/ research about the reactions/ longtime effect to botox with children under 18. If any one knows please let me know. I am happy to read. I want the best for Meg and I am not a scientific doctor or so. We raised our children without much medicins other as as much homeopathical or giving the body time to heal. I know the whole world doesn't have time as economy is more important and everything need to go fast and faster, but some things.... with patience, love and therapy.... It is just I don't have experience with braindamage...
Wednesday I decided to visit a museum called: "de kantfabriek" a special international felt exposition was there and it made my heart beat faster again, got inspired! And the hour drive from our place to get there, it was over faster as thought as I loved the drive, seeing more as only the distance between where I sleep and you are... . My mother was with you, Meg, when a podiatrist came for your toenail. You started crying when she came in, hope I didn't scare you, when I told you she was coming to place a special little wire brace on your nail... Grandma told me when she was working on it you undergo it calmly. Proud of you girl!
Thursday, (today) You were on attached on the "stand-table" you are now at 70 degrees vertical. for 30-45 minutes way to go! By the way, you really grown huge Meg <3
I also heard next week you will be testing an electrical wheelchair. Jippy! Will give you more autonomy about where you want to be in the building. Fingers crossed you still have insight in depth and heights and you know to avoid bumping into things or the smaller kids... but guess practice will tell..... You wil get a wheelchair drivers licence :)
Now on my way again, Thursday isn't over yet... Hope to get many reactions about botox experiences.Thank you in advance.
Til next post!
Such talks are a pull back to reality for me plus a "fight" against the prospections. No one can vieuw in future and ofcourse I know Meg wil never be the same as before, but I do keep my dream of her future as open as possible, not adding any label on her yet. I believe in the strength of visualisation and positive vibes and common sense too, but also Meg is showing huge will to survive and works very hard. I hope she wil surprise many. I humbly ask you all again to pray for full recovery.
On Tuesday in the morning I had a talk with the sales representer of the speaking computer. We adjusted the computer to Meg's possibilities at this moment. Typing is going faster as in the beginning :) In the afternoon the neurologist from the hospital came and checked Meg's reactions. He had an idea to treat her toe and leftarm with Botox to weaken her spasm, I don;t feel right about it. I think there are other options/ possibilities before doing such drastic thing (again). I cannot find any scientifical report/ research about the reactions/ longtime effect to botox with children under 18. If any one knows please let me know. I am happy to read. I want the best for Meg and I am not a scientific doctor or so. We raised our children without much medicins other as as much homeopathical or giving the body time to heal. I know the whole world doesn't have time as economy is more important and everything need to go fast and faster, but some things.... with patience, love and therapy.... It is just I don't have experience with braindamage...
Wednesday I decided to visit a museum called: "de kantfabriek" a special international felt exposition was there and it made my heart beat faster again, got inspired! And the hour drive from our place to get there, it was over faster as thought as I loved the drive, seeing more as only the distance between where I sleep and you are... . My mother was with you, Meg, when a podiatrist came for your toenail. You started crying when she came in, hope I didn't scare you, when I told you she was coming to place a special little wire brace on your nail... Grandma told me when she was working on it you undergo it calmly. Proud of you girl!
Thursday, (today) You were on attached on the "stand-table" you are now at 70 degrees vertical. for 30-45 minutes way to go! By the way, you really grown huge Meg <3
I also heard next week you will be testing an electrical wheelchair. Jippy! Will give you more autonomy about where you want to be in the building. Fingers crossed you still have insight in depth and heights and you know to avoid bumping into things or the smaller kids... but guess practice will tell..... You wil get a wheelchair drivers licence :)
Now on my way again, Thursday isn't over yet... Hope to get many reactions about botox experiences.Thank you in advance.
Til next post!
Dear Kim,
ReplyDeleteHere are some links about use of botox by children with brain injuries:
http://www.lillooetnews.net/jury-awards-family-6-75-million-in-lawsuit-against-botox-maker-after-son-s-spasm-treatments-1.1601629
http://www.ncbi.nlm.nih.gov/pubmed/10480205
http://www.birthinjuryjustice.org/types-of-birth-injuries/botox-treatment-cerebral-palsy/
http://www.yourlawyer.com/topics/overview/botox
http://www.canchild.ca/en/canchildresources/botox.asp
We think often of you both and send you love and hugs.
thank you Estelle and your mother! I only searched in dutch... nothing to be found,
DeleteSo glad to see that Estella has posted links for you, Kim! So many decisions to make and so much to learn… I too, think of you often and send love and prayers…xx
ReplyDeleteLieve Kim,
ReplyDeleteover botox kan ik je jammer genoeg niets vertellen maar als ik geweten had dat je in de Kantfabriek was had ik je daar graag een rondleiding gegeven.
Mooi hè, die expositie?
XXXm
Hi Kim, I have been following your daughters story off and on, on your sister's blog. I am glad she progressing. Brain injuries are tricky things. Her youth may be her best fortune. I will keep her and your family in my thoughts. :)
ReplyDeleteDear Kim,
ReplyDeleteWe are much alike....I too keep positive thoughts for Meg, and I keep you, Meg and your entire family in my thoughts and prayers. I am sending you the biggest hug, and a big one for Meg, too....She has such a strong will and determination. Such hard work, and as with the tears, frightening at times I am sure. I am so happy that Meg will be getting her electric wheelchair....a great move towards some sense of independence for her. I love you all very much.