Gracielicious

Hello to all!  Hope everyone had a great summer!  We have only been back from Gracie's intense therapy in Kansas for a week now.  We are still trying to get settled in.  As soon as we got home it was off to school and paperwork catch up and unpacking 4 weeks of "stuff" accumulated during our trip.  Not to mention we were with Nana and Papa for 4 weeks so take 3 grandkids and put them with their grandparents for 4 weeks and just imagine the toys we accumulated!

Well, everything went well and we have tons of pics and things to share and will post all soon...just wanted to let ya'll know all is well and we are home now!  We are having a beautiful fall season...this is our third fall here in MN and I hope this winter when I am cursing the snow and freezing cold I can close my eyes and remember the fall season here!  It is that beautiful!

So check back soon...I will be posting pics and stuff soon!  And the cookbook is still a go...just had to take a big break from it with the therapy stuff this summer...we will be back to working on it soon!

dani :-)

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Gracie started horse riding therapy a couple of weeks ago.  Hippotherapy is used to help kids with all sorts of disabilities but for Gracie it will help her balance and strengthen her torso!  She really liked it but unfortunately we will have to take a break from it for 5 weeks as we are leaving for Kansas Tuesday to start her Hyperbaric Therapy and her Therasuit/Intense Physical Therapy.  She also started a new feeding/speech/occupational therapy center a few weeks ago and we are excited with the new ideas they have and she seems to really like her therapists there!  You never know....we have had therapists where she just doesn't click with them and just cries the whole time and you have to move on to finding a new therapist.  But we really like this new place and she has been going twice a week for 2hrs each time and has does really well!  Of course we are having to take a break from this therapy as well until we return from Kansas...but when we come home we will be working with her speech therapist (Julie) to fit her for a new talking device called a DynaVox.  She will be able to use this little computer as her voice...it is installed with a talking tool software and she can push the buttons on the touch screen and it will talk for her.  It is small and portable so we can take it everywhere with her!  We are very excited about this for her because she is sooooo smart and has so much to say and they have tested her with one at therapy and she can use it like you wouldn't believe!  The DynaVox is a talking tool, computer and dvd player in one, so she will be able to play her computer games on it and watch movies, etc!  

Well, check back soon....I hope to be posting more often with this hbot and intense therapy for the next few weeks...hope I will have lots of goods news to post!  Here are links to pics from Gracie's horse therapy and from a recent little trip to the MN Children's Museum.

dani :-)

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Here is a video clip from a friend of mine....they (Debbie, Nestor and Amelia) were featured in a news segment about hyperbaric oxygen therapy and intensive (suit) physical therapy.  Amelia has been receiving these two therapies the past few weeks.  While they were there they did a story about the therapy center and the success of these therapies for kids like Gracie and Amelia with cerebral palsy.  This is the therapy I mentioned that we will be taking Gracie for in August!  We have done the HBOT before and Gracie showed great improvements from it...so we are excited to try these two therapies combined!  Amelia is doing so well...it's just awesome...check it out below!

Amazing Amelia

dani :-)

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We are no longer using this blog for updates on Gracie...please visit her new site at...

Really not much going on lately to report. Gracie has been sick for the past couple of months. She had pneumonia twice and an ear infection. She handled the pneumonia pretty good, compared to when she was younger. It really showed us how far she's come because a couple of years ago she had pneumonia and we were in the hospital for two weeks. This time it was just urgent care for a couple of hours and home with an antibiotic. As for having it twice though in a two month time frame, they think it probably just never fully went away the first time. We took her in for a follow-up a few days ago and lungs are clear!

She was fitted yesterday for an adaptive bicycle...she loved it...can't wait to get hers! It has to be ordered so it will be a couple of months probably but maybe sooner we hope! Just please....can anyone explain why we went to Target a few weekends ago and bought Logan a "big boy" bike for $75 and because Gracie has to have a "special" bike it's $4000? I mean it's not your typical bike or anything I know...but come on! We will post pics when she gets it!

School is out in a couple of weeks and the girls are excited! We are planning to go to Nana and Papa's in August for HBOT and intensive suit physical therapy. There is a HBOT center in Kansas City only about 20 mins or so from their house. Which is nice because we can just stay with them and not have to worry about a hotel.

Jerry is busy on the cookbook...he only gets a chance to work on it here and there between being a dad, husband and work he doesn't get much time to work on it....but it's coming along! Here is an example of a page from the book....

So...that's about all for now...hope all is doing well!

D

Labels: Adaptive Technology, Cookbook

Our church had a family fun festival a few days ago and the kids had a blast!  They rode horses, played games and they had those blow up jumping obstacle courses!  Gracie loved the horses so we know she will love the hippotherapy (horse riding therapy) when she gets to start!  You will see Gracie in her new "ride" in these festival pics.  I just realized that I had not posted any pics yet of her new wheelchair.  She really likes it...she had so outgrown the stroller so she was ready for it...me not so much.  It was kind of a bittersweet moment for me....happy for her to have it because I know she is more comfortable in it and likes it but hard for me and sad because she needs it and has to have it :-(   She looks cute in it though, all pink and shiny!  :-)  Here are some pics from the festival....

Also, here are just some misc pics from the past few weeks.

 

d :-)

 

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Well, this may be an "I need to vent" post...so here we go!  In the past few weeks I have come across the comment twice as to being or feeling blessed.  First let me run past you the opposite of blessed...cursed. So the first situation someone recently forwarded and article to me about an amazing young man with special needs and his dad...although the article was very interesting and I appreciated her thinking of me and my family...she had the nerve to mention to me how the article made her feel "blessed".  Then while my mom was talking to a couple of people the other day a young lady with disabilities passed by them in her wheelchair and one of the ladies looked at her and said "now that's when you count your blessings and know you are blessed".  Now being a mother of a child with special needs what you are telling me and everyone out there with an illness or a disability is that they are not blessed. Maybe this sounds like I am overreacting or something but if you really think about what the word "blessed" means I think I am not overreacting.  Yes, I want Gracie to be healthy and walk and run and eat and talk, etc...but is she not blessed by God because she can't or are we her family and friends not blessed because she cannot do these things?  Gracie and her friends and family and everyone else like her are blessed as well.  Having a disability or a disabled child is just a difficult hurdle just like other things in life such as financial struggles or a loved on dying, etc.  Your life can change in the blink of an eye and just because challenges confront you in whatever way they may present themselves doesn't determine whether you are blessed or cursed.  

We are human and say things and don't "think" about the words we choose when we are speaking...I can only imagine the things I have probably said in the past that has hurt someone and I didn't realize it.  Like I said this was a vent post and just something that has been eating at my heart and just needed to write about it.

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