This is sort of how Alayna's stander may look. It is a Squiggles Stander by Leckey.
We continue practicing how to sit up! She is doing quite well, but still loves to have her fingers in her mouth.
She still loves her bath and as you can see has fingers in her mouth again!
All smiles...for now anyways...she has been a bit on the crabby side lately (?)
It surprised me the other night when I was dressing Alayna and turned my back for just a second and she had found her comb on the bed and picked it up! She was checking it out and trying to put that in her mouth too!Computer Issues At Home
I still can't get my computer to work at home. It isn't reading anything we put in it. So I had to resort doing this at work. And yes, I did do this after school time. So, this is going to be a short overview of yesterday's appointment with Trinity and the CTC.
Stander and Kid Kart Update
Yesterday, Alayna was measured and put in a Squiggles Stander made by Leckey. The rep brought one and we gave it a try. Alayna fit in it quite well and it has special features for her that made us go with this one instead of a Rifton. It comes in pink, so I'm happy and it is easily transportable which also makes me happy. This will go back and forth from our house to Patti's or Grandpa's during the day. Alayna also was measured for the Kid Kart Tlc which is bigger than the Kid Kart Express and will allow for longer use and growth. Each item is very costly to say the least and each one has "features" that are extras. Each additional "extra" has a code and a cost. It is amazing how fast things add up. It was estimated that the stander would be $3,000-$4,000 and the Kid Kart would be $2,000-$3,000. So, we are waiting for the rep to run both of these through our insurance and we'll just see what happens. Please say a prayer that both get approved and that the insurance is willing to cover ALL (okay, if not most) of the cost. Alayna needs both of them to help her development.
I still can't get my computer to work at home. It isn't reading anything we put in it. So I had to resort doing this at work. And yes, I did do this after school time. So, this is going to be a short overview of yesterday's appointment with Trinity and the CTC.
Stander and Kid Kart Update
Yesterday, Alayna was measured and put in a Squiggles Stander made by Leckey. The rep brought one and we gave it a try. Alayna fit in it quite well and it has special features for her that made us go with this one instead of a Rifton. It comes in pink, so I'm happy and it is easily transportable which also makes me happy. This will go back and forth from our house to Patti's or Grandpa's during the day. Alayna also was measured for the Kid Kart Tlc which is bigger than the Kid Kart Express and will allow for longer use and growth. Each item is very costly to say the least and each one has "features" that are extras. Each additional "extra" has a code and a cost. It is amazing how fast things add up. It was estimated that the stander would be $3,000-$4,000 and the Kid Kart would be $2,000-$3,000. So, we are waiting for the rep to run both of these through our insurance and we'll just see what happens. Please say a prayer that both get approved and that the insurance is willing to cover ALL (okay, if not most) of the cost. Alayna needs both of them to help her development.
5 comments:
Sounds like things are moving in the right direction! Both the stander and the Kid Kart will be great for Alayna and will promote healthy development. As I'm sure you have been made aware, it is so much better for Alayna to be taught proper positioning than it is to try to break bad habits later.
You can tell from the photo of Alyana sitting that she is much stronger and has much better trunk control - she looks much more comfortable and confident in this position now!
Keep up the good work and we'll send out some prayers from good news from the insurance company. You need to move over here to Iowa so you can get those things paid for! :o) hehehehe
Hey there,
Both the stander and kid kart look great! I love the pink too! :)Alayna will love them and you will be so surprised how much benefit she will gain from using those in therapy. From my experience, I worked with kids and parents who had both the items you are talking about and loved the results! If insurance doesn't pay for all the cost, make sure you ask the rep for payment plan options. I'm sure you have already, but I know with my Mom's equipment that we had to buy for her, the agencies would try to help us financially as best they could when insurance didn't pay for her wheelchairs, beds, etc. Alayna looks great and getting stronger each day! Keep up the great work!
Love,
Meg and her gang
I love the stander! The kid cart is going to be great for Alayna. It will have her at a good level to see what's going on around her, and it will help her sitting. I am so excited for you guys! I love the pics. She is such a beautiful girl.
I come to your site often but have never left a message. I just have to thank you for taking the time to share you story. You have been my rock many of days and have lifted me up when I have been down. I have a daughter with 1P36 who was born in December of 2006. Her story is very similar to your little angel. Right now we are going thru the biting of the arm stage and we are also in the process of getting a stander for her. I love the one you picked out so I am going to ask about that one. We LOVE pink for our little "princess". We have had our kid kart for a few months and it works really well.
Again thank you so much....you have no idea how much you have helped me. You make me feel like I am not alone in this journey.
Karen
Nice to meet you Karen. Are you a part of our Yahoo 1p36 group? I know our group has at least one Karen and I was wondering if that was you!? Email me at angela.dekeyrel@yahoo.com if you'd like. If you already aren't a part of it you should be! It's a wonderful support group of 1p36 parents.
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