Hi All....
Posted: Tue Feb 05, 2008 8:03 pm
I know, it's been a while. 
This year has been chock full of stuff, some good, some bad. We haven't been to the parks anywhere near as much as normal, MJ's health hasn't been great and the Neuro has decreed that we can't take her out in more than 85 degree weather (Heat Index or real heat) :( That meant being locked inside for almost 5 months since it never seemed to rain in the afternoon and cool things off.
She has also been diagnosed with 4 new things since I've posted (S-Curve Scoliosis, Lordosis, Spina Bifida Occulta and most recently ADHD) I really thought dealing with the ADHD wouldn't be that bad compared to her other issues, but it is proving to be one of our biggest challenges.
She had her first strep infection last week, by the time she started acting badly she had had it for a while (the challenges of a non verbal kid) Antibiotics are on board and seem to be working well. (except for the rash from the corn)
Now for some good:
It's now cool enough to take her out again and she isn't sick, so she has asked to go to the parks the last couple of weeks.
Her birthday is tomorrow (2-6) through some weird happenstance we have comp tickets to take her to La Nouba, so we are very excited about that.
Sat a friend of ours came up and we went to AK, she got MJ a beautiful Belle dress and with her dark hair and eyes she looks a lot like her. We're planning on taking her to Pirates and Princesses soon, so I will take pictures if anyone wants them.
During the long summer we got her a puppy for company...although puppy is kind of a misnomer. While he is young (8 months when we got him, a year this week) he is a Shepard/Border Collie mix, so he is huge, but has the best tempermant we could ask for. He seems to sense that MJ is different and just takes whatever she dishes out. He is a great dog (this coming from a non-dog person ;) )
We have finally secured therapy for her, she is in PT/ST twice a week and will add OT in as soon as the place she goes hires a new OT (they are interviewing now) Through this we hope to soon have some other contacts to help her as well. (speech equipment, etc) This Thursday she will be refitted for new braces (she hasn't worn them since CA and even then it was only her left foot) these ones will be all the way up her calf and she will be getting modified shoes to go with them. There is also talk of a walker to help correct her stride when she is walking and not in her chair. Her chair is also getting refitted after 2 years (It's supposed to happen every year) so we are very grateful it is happening and hoping it will make her chair more comfortable.
We have also found a new church with a Special Needs Program, it isn't our denomination, but we are going to do it because it is best for MJ, they have many programs for her there, some that we can send her to alone (like her Eagle Nest Class on Saturday nights) and others we need to stay with her, but she can come and participate as long as one of us stays with her (things like Awanas and Bible Toons)
We have heard about and plan to investigate the playgroup for local disabled children at Give Kids the World, but haven't gotten there yet.
I hope you are all doing well and hopefully we will see some of you in the parks.
This year has been chock full of stuff, some good, some bad. We haven't been to the parks anywhere near as much as normal, MJ's health hasn't been great and the Neuro has decreed that we can't take her out in more than 85 degree weather (Heat Index or real heat) :( That meant being locked inside for almost 5 months since it never seemed to rain in the afternoon and cool things off.She has also been diagnosed with 4 new things since I've posted (S-Curve Scoliosis, Lordosis, Spina Bifida Occulta and most recently ADHD) I really thought dealing with the ADHD wouldn't be that bad compared to her other issues, but it is proving to be one of our biggest challenges.
She had her first strep infection last week, by the time she started acting badly she had had it for a while (the challenges of a non verbal kid) Antibiotics are on board and seem to be working well. (except for the rash from the corn)
Now for some good:
It's now cool enough to take her out again and she isn't sick, so she has asked to go to the parks the last couple of weeks.
Her birthday is tomorrow (2-6) through some weird happenstance we have comp tickets to take her to La Nouba, so we are very excited about that.
Sat a friend of ours came up and we went to AK, she got MJ a beautiful Belle dress and with her dark hair and eyes she looks a lot like her. We're planning on taking her to Pirates and Princesses soon, so I will take pictures if anyone wants them.
During the long summer we got her a puppy for company...although puppy is kind of a misnomer. While he is young (8 months when we got him, a year this week) he is a Shepard/Border Collie mix, so he is huge, but has the best tempermant we could ask for. He seems to sense that MJ is different and just takes whatever she dishes out. He is a great dog (this coming from a non-dog person ;) )
We have finally secured therapy for her, she is in PT/ST twice a week and will add OT in as soon as the place she goes hires a new OT (they are interviewing now) Through this we hope to soon have some other contacts to help her as well. (speech equipment, etc) This Thursday she will be refitted for new braces (she hasn't worn them since CA and even then it was only her left foot) these ones will be all the way up her calf and she will be getting modified shoes to go with them. There is also talk of a walker to help correct her stride when she is walking and not in her chair. Her chair is also getting refitted after 2 years (It's supposed to happen every year) so we are very grateful it is happening and hoping it will make her chair more comfortable.
We have also found a new church with a Special Needs Program, it isn't our denomination, but we are going to do it because it is best for MJ, they have many programs for her there, some that we can send her to alone (like her Eagle Nest Class on Saturday nights) and others we need to stay with her, but she can come and participate as long as one of us stays with her (things like Awanas and Bible Toons)
We have heard about and plan to investigate the playgroup for local disabled children at Give Kids the World, but haven't gotten there yet.
I hope you are all doing well and hopefully we will see some of you in the parks.