Sunday, April 26, 2009
We took Jack and Julia to the Castle Rock Rec Center swimming area for kids today......and Julia did GREAT!!!!! Last year she had a lot of sensory issues with water and water getting splashed on her face and hair, but this year was a dramatic improvement! She was upset that the slide was closed - but had a great time climbing up the net......with mom's help of course......she liked it much more than mom did, but hey, I did it for her. Jack had fun too, but was too short for the big tube slide...he said, oh well, maybe when I am seven.......Towards the end Julia melted - it was a long loud drive home, but all in all a good trip!
Friday, April 24, 2009
More info and success stories on this therapy I have never heard of - Anat Baniel Method........interesting!
http://www.anatbanielmethod.com/parents-success-stories.htm#top
http://www.anatbanielmethod.com/parents-success-stories.htm#top
Interesting story.....kind of long, but the end made me cry with hope that one day Julia will do as well as this child....
http://www.youtube.com/watch?v=c3TrAt6SX6E
Susan
http://www.youtube.com/watch?v=c3TrAt6SX6E
Susan
Wednesday, April 22, 2009
GO MAKENZIE!!!!!!!
Julia's friend Makenzie!!!! And mom's friend Pam.........CONGRATS!!!!!!!
http://www.youtube.com/watch?v=NYKclj_0OBc&eurl=http%3A%2F%2Fwww%2Efacebook%2Ecom%2Fhome%2Ephp%3Fref%3Dhome&feature=player_embedded
http://www.youtube.com/watch?v=NYKclj_0OBc&eurl=http%3A%2F%2Fwww%2Efacebook%2Ecom%2Fhome%2Ephp%3Fref%3Dhome&feature=player_embedded
Mr Shawn took Julia to her PT, OT, and ST today so I could go to my appointment. He is so great to help out with this. THANK YOU SHAWN! It is amazing how much he helps out and understands. He said Julia had a really good few sessions and was happy for most of the time! Go Julia!
I was sent this link from a friend of mine who has an adult child who was injured by vaccines and is very active in the research and community...thought I would send it along!
http://www.huffingtonpost.com/jim-carrey/the-judgment-on-vaccines_b_189777.html
Susan
I was sent this link from a friend of mine who has an adult child who was injured by vaccines and is very active in the research and community...thought I would send it along!
http://www.huffingtonpost.com/jim-carrey/the-judgment-on-vaccines_b_189777.html
Susan
Tuesday, April 21, 2009
Today Julia woke up with a really bad cough....there's a bug going around - most everyone has had it. Hopefully it will just run its course and be over with. However, one of Julia's friends (well, her mom, Pam, is mostly my friend - Julia has only met Makenzie once) had it and had to go to the ER - but Makenzie has significantly more issues with her brain damage and aspiration and gagging than Julia does, so I am thankful for that (not that Makenzie is worse off, but that Julia doesn't have those problems!!!). I just feel bad loading her up on even more medications than she is usually on.....she has her own little pharmacy going here!
I've been feeling kinda down lately. Even with Julia's progress, I seem to have a lack of ability to just "get over it" and accept Julia for who she is. Let me tell you, that is easier said than done. She is still so cute and has become much more affectionate towards me and others over the last month or so....she sometimes just walks over and gives me a kiss on the mouth which she never would have done three months ago, but I still miss the things she "should" be doing by now. I want to sit and watch a movie with her, but she doesn't sit for more than about three seconds. I want to have her help me cook popcorn and watch TV like Jack and I did when he was her age, but her attention span makes this impossible. I want to sleep in bed with her like I did with Jack when he was her age, but she will roll out of the bed. I want to hear what she has to say (other than screeching and crying), but she still does not speak, other than an occasional "mama". I know this shouldn't be and isn't "all about me".....she's doing the best she can, and so am I, but many days I feel my best is not enough. I feel overcome with sadness and anger at times (many times). I just can't get it out of my head about what she might had been doing if I hadn't had her vaccinated. I'm sure there is a lesson here somewhere for me and my family, but wow...I wish I knew what it was and wish I could handle things better.
Jack has his six year check up in an hour. He is due for his vaccines as well. He will NOT be getting them. I pray I don't get "the look" from the pediatrician for not vaccinating him....but if I do get the look, I have all of Julia's records (over 200 pages from the last two years) to hand to him for Julia's file, and hopefully he will understand my hesitation.
Well, hopefully these feelings I've been having will dissipate....they always seem to come and go, so pray that they "go" soon. Thanks for listening.
Susan
I've been feeling kinda down lately. Even with Julia's progress, I seem to have a lack of ability to just "get over it" and accept Julia for who she is. Let me tell you, that is easier said than done. She is still so cute and has become much more affectionate towards me and others over the last month or so....she sometimes just walks over and gives me a kiss on the mouth which she never would have done three months ago, but I still miss the things she "should" be doing by now. I want to sit and watch a movie with her, but she doesn't sit for more than about three seconds. I want to have her help me cook popcorn and watch TV like Jack and I did when he was her age, but her attention span makes this impossible. I want to sleep in bed with her like I did with Jack when he was her age, but she will roll out of the bed. I want to hear what she has to say (other than screeching and crying), but she still does not speak, other than an occasional "mama". I know this shouldn't be and isn't "all about me".....she's doing the best she can, and so am I, but many days I feel my best is not enough. I feel overcome with sadness and anger at times (many times). I just can't get it out of my head about what she might had been doing if I hadn't had her vaccinated. I'm sure there is a lesson here somewhere for me and my family, but wow...I wish I knew what it was and wish I could handle things better.
Jack has his six year check up in an hour. He is due for his vaccines as well. He will NOT be getting them. I pray I don't get "the look" from the pediatrician for not vaccinating him....but if I do get the look, I have all of Julia's records (over 200 pages from the last two years) to hand to him for Julia's file, and hopefully he will understand my hesitation.
Well, hopefully these feelings I've been having will dissipate....they always seem to come and go, so pray that they "go" soon. Thanks for listening.
Susan
Sunday, April 19, 2009
Well, Friday and Saturday were spent mostly inside, as a huge snow storm came blowing through most of Colorado. I would say here in Castle Rock, we got at least two feet of snow....thought it would never end, but today it did. The sun was out and a lot of the snow had already melted. Julia was excited to see what it was all about! Shawn (who I like to refer to as the kids' "bonus dad"........Jack calls him his "secondary dad") built a snow fort with a toboggan slide. All the neighborhood kids came over and played in and on it! Julia wasn't able to do the slide, but she had fun eating the snow and wandering around watching the other kids. We could only get one snow boot on her....the left foot was too curled up, so we had to use one boot and one tennis shoe....oh well, she didn't care!
Thursday, April 16, 2009
4-16-09
Julia had a follow up with her physiatrist today.....that is a doctor of physical therapy. Julia's physical therapists had been wondering about the braces that she has for her legs, and whether they were really necessary or if they needed to be changed, etc....so, we saw Dr Apkon today. She said that she is really happy with the way Julia's right leg and foot look. She is not thrilled with the left foot and lower leg, but feels the brace she has for that leg is overkill....so we get to get a new one......She is worried that if we just forgo the brace, she will end up with problems in one of her tendons and need surgical correction.....so we will get set up for a new brace. Hopefully Julia will leave it on! That was the whole problem with the last set of braces! She took them off, even when I duct taped them on! Dr Apkon also recommended a cast for Julia's right arm....to prevent her from using it so freely so that she is forced to use the left one more...she said there have been studies from older stroke victims, who years later used this approach, and they were able to see definite changes, even on MRI's of their brains. The cast is removable....that is nice for bath time, etc... I asked her about when I should expect things to plateau with her gains, and she said, for motor stuff, usually by age 7. So she has four more years to improve! That is great news! As far as cognitively, she suggested having some formal tests done that are made for nonverbal individuals in two years to see where she is at. I wish we didn't have to wait so long for that, but she said it is just too hard to test when they are so young and nonverbal. Personally, I think she understands a lot, all things considered. So, overall it was a relatively positive appointment. Talk to you later!
Julia had a follow up with her physiatrist today.....that is a doctor of physical therapy. Julia's physical therapists had been wondering about the braces that she has for her legs, and whether they were really necessary or if they needed to be changed, etc....so, we saw Dr Apkon today. She said that she is really happy with the way Julia's right leg and foot look. She is not thrilled with the left foot and lower leg, but feels the brace she has for that leg is overkill....so we get to get a new one......She is worried that if we just forgo the brace, she will end up with problems in one of her tendons and need surgical correction.....so we will get set up for a new brace. Hopefully Julia will leave it on! That was the whole problem with the last set of braces! She took them off, even when I duct taped them on! Dr Apkon also recommended a cast for Julia's right arm....to prevent her from using it so freely so that she is forced to use the left one more...she said there have been studies from older stroke victims, who years later used this approach, and they were able to see definite changes, even on MRI's of their brains. The cast is removable....that is nice for bath time, etc... I asked her about when I should expect things to plateau with her gains, and she said, for motor stuff, usually by age 7. So she has four more years to improve! That is great news! As far as cognitively, she suggested having some formal tests done that are made for nonverbal individuals in two years to see where she is at. I wish we didn't have to wait so long for that, but she said it is just too hard to test when they are so young and nonverbal. Personally, I think she understands a lot, all things considered. So, overall it was a relatively positive appointment. Talk to you later!
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