Gracielicious

Well Natalie is outgrowing everything...though she has come sooooo far...we still had hoped(of course) that she would not need all of this special equipment. We are in the middle of demo(ing) equipment piece after equipment piece....we have recently placed an order for a wheel chair :( we so hoped we wouldn't have to go there but she has to have it...it will take about 8wks or so to get it though.

Luckily they let you demo these things before the big purchase. We had to change and add about 15+ things for this chair to be appropriate for her. We are also trying out a gait trainer(type of a walker), a special bath chair and are looking for a feeding chair as well. There is more needed but we can only demo so much at one time...it is so overwhelming.

We are also starting to discuss if we want to convert the van into one with a lift where we can just push her chair into place and no longer have to transfer her to a carseat. She is getting so big our backs are not doing well and I am sure the bigger she gets it is uncomfortable for her as well to be moved around.

So anyway lots going on with all this so will keep ya'll posted!

d

Labels: Assistive Equipment, Growing

I have a really hard time dealing with the fact that we are a different family than the average family. I miss that we can't do the typical normal family things together. People take this for granted....I have seen it and it makes me so sad.   

It is so hard to even just all go to the store together or just dinner. We can't just go family camping or lets just up and take the kids to the zoo or whatever. Everything we do (pretty much) is separated. Jerry will run here or there and then I will run out and do what I have to do, etc.

You can't just take Gracie anywhere...you have to be so prepared with all the seizure meds stuff and feeding tubes and you never know when she is just not going to cooperate and the day just has to come to screeching halt! And yes I know not all kids cooperate, but when a child like Gracie doesn't it's so different.  We can't just be out and about and decide oh let's grab dinner out or something...we have to make sure we have the portable t.v. charged or she won't eat and will fuss and scream the whole time. I am sad for Ari and Logan that they can't just experience these little family things.

Not to be selfish...but it is just really depressing sometimes.

d

Labels: Special Needs Difficulties

Hello! Tonite was our parent-teacher conference with Gracie's teacher Mr. Mike and all her therapists were there too! It went very well....they talked about her future with reading...which is so exciting to think she may be able to read someday!

I know she loves books and for us to read them to her and look at the pics and such but how cool for her to be able to read to herself and get that enjoyment from a book! Mr. Mike said that they are working on "sight words" right now...such as the, and, a, is, etc. And out of the 8 she recognizes 7 of the words! So they thought this to be a great sign that she will be able to read!!!!!

Her speech therapist is now working with her on a new communicative device...the Dynavox device Gracie was using broke...ooops! Apparently they were working with her the other day and she didn't want to do what they wanted her to so she threw it off the table and...yep, it broke...not good considering these are $8,000 (yes thousand not hundred dollar) communication devices!

There is no such thing as inexpensive when it comes to special needs equipment. I guess she chose a different way to communicate with them this time...I think they got the hint! Her physical therapist says she is doing well and gave us some new exercises to work on at home for strenghtening her torso and arms...she hates these but they work. Overall it was a good conference....her therapists and teachers are proud of her progress! And so are we! :-)

d

Labels: Adaptive Technology, Reading