Look what is coming to live with us!

Ok, ok, so it's not actually THIS stander, but it's one like it!  I have spent countless hours on the phone this past week calling every lending closet I could find or that was recommended to me, only to find out that not only did no one have a mobile stander, but most people did not even know what one was.  I called the spina bifida association and any other place I could think of that might be able to help.   I called CRS (children's rehabilitative services) to beg them to get one for Madi, but found out that they do not pay for standers at all.  I guess it was a blessing in disguise that Madi was not on APIPA (state insurance) when we got her stander, because it would have been denied.  Since Madi's secondary insurance is APIPA we have to go through CRS for anything Madi needs.  The problem, then, is that even though APIPA will pay for durable medical equipment that your child is written a prescription for, they make you go through CRS to get it.  And, since CRS doesn't provide standers, it doesn't matter that APIPA will provide durable medical equipment, because you cannot get the equipment from anywhere but CRS.  We do have a primary insurance, but can't get the prescription until Madi's orthopedic surgeon is back from out of town after the first of the year.  That means we have to pay a deductible of $2,500 IF they will cover it, so basically it would end up the same as just buying a new one without going through insurance.  Ugh. New Rifton Dynamic Standers are a tad over $2,000 (a small is $1,458 and the wheels for the small are $774), which just wasn't going to happen.  I posted an add on craigslist, but got no replies.  I searched the local craigslist, as well as national sites where people sell used equipment.  I joined a few yahoo groups to try to locate one.  I kept coming up with either nothing, or something that was still too much money.  Finally I got the idea to google "craigslist and small rifton dynamic stander".  This brought me to an ad in Florida for exactly what we needed... a small Rifton Dynamic stander for $500.   Madi had enough money in the account where we keep her Amazon Associates money, as well as birthday money she gets and any money that was ever given to us for her, so we went ahead and bought it.  I talked to Ron at Hanger and Tami her physical therapist about it first and both said it was a really good deal, that it would be something very beneficial to Madi, and that it would last many years for her because it is very adjustable.  Both highly recommended that we get it for her.  I am praying it is in the condition it was advertised in and that it arrives safely.  Sending someone that much money and having little recourse is a bit nerve racking!  I have a UPS tracking number (the lady we bought it from is awesome and had UPS e-mail us when she brought it in so we would know they had it.  She also forwarded all the info about the shipment to us) and am stalking it, but it looks like it won't be in until late next week. Long story short.... MADI HAS A MOBILE STANDER!!!  YEAH!!!  I know she will love it!  I will update with pictures as soon as we have it!

Just what I needed to hear today...

Today Madi went to see Ron at Hanger to pick up her a pretty new AFO for her left foot.  This is her third AFO since she was born.  While we were there I had Ron check out her HKFOs because Tami and I wanted to make sure she was making good contact with her left foot when she walks as her legs are a tad different in length.  Madi took the opportunity to show off her walking skills while I held her hands.  Man, she is really moving!  I used to have to stand behind her and kind of nudge her hips to help her move her feet.  Not any more!  She just does it all on her own, as long as she uses her walker or I help balance her by holding her hands.  Ron had another person from Hanger in with him and they both got a kick out of watching her cruise and listening to her giggle and laugh with Conner.  Madi loves her big brother so much, and he can make her crack up like no one else can!  Ron told me that she is really doing amazing and that he cannot believe how well she is moving about.  We even un-hitched her hip lock and she was still doing great.  She used to just kind of tip forward, but she is getting her balance in place and even that was not slowing her down.  I am so proud of the strong and determined little girl she is.  Sometimes it helps to hear how great she is doing from someone else, even though I already know it.  I can't look at her without thinking of how amazing and perfect she is!

On Our Quest...

We are on a quest to either find a used Rifton Dynamic Stander for Madi (in size small, just in case anyone out there has one to sell!!) or one to borrow.  In my quest to find help, I've found a few sites I thought I'd pass on.  You can join them and post ads for things you want to sell or buy.  Hope that the info helps someone else out there!

http://groups.yahoo.com/group/SpecialChildExchange/ (This is just for equipment, I swear.  I wouldn't exchange my child for any other one in the world!)

http://groups.yahoo.com/group/SCE-Equipment/

http://www.equipmentconnectionsforchildren.org/index.html

http://www.helpingfromheaven.org/ (they ship)

http://www.disableddealer.com/item.asp  (there is a fee to list items for sale)

http://www.rehabequipmentexchange.com/ 




If anyone else has more to add to the list, please leave a comment and let me know.  Thanks!!

Putting out a wanted list :)

After talking with Tami, Madi's physical therapist, we decided Madi would really benefit from a mobile stander.  It would allow her to be upright and at the same height as other children her age, but would still give her great mobility.  Her HKFO's are wonderful for weight-bearing and walking, and the mobile stander would not replace what the HKFO does.  We  would still want her to use her HKFOs as much as she can/wants to, but a mobile stander would be good for her when she's not in her HKFO's (she is currently in them a few hours every day).  Right now she crawls, goes in her HKFO's, and uses her wheelchair throughout the day.  The mobile stander would probably be more something we use at home, then her wheelchair when we go out.  It is like a wheelchair but it helps hold the child upright so that they still get good circulation and their muscles stay nice and stretched.  Being upright does wonders for the bowels and bladder too!  The bad news, though, is that insurance will not cover HKFO's and a mobile stander.  I am going to contact the local Spina Bifida association and see if they have one in Madi's size that we can borrow, but I figured I'd throw it out here too.  If anyone has a mobile stander their child has outgrown in Madi's size (she is two and needs a mini or a small) and they are wanting to sell it, please let me know!  We are officially on the lookout!

Here is what a mobile stander looks like:

Here is a link to a mobile stander that Tami recommends:

http://www.rifton.com/products/mobility/dynamicstanders/index.html

And here is what they say about the standers:

Stronger bonds. Stronger bodies.

Eye to eye, smile to smile – engaging with peers is so much more rewarding for children with special needs when they can interact in an upright and mobile position. And the Dynamic Rifton Stander makes it easy – even for kids with no weight-bearing ability.
The Dynamic Stander gives children who would otherwise be wheelchair-bound greater independence and mobility. Even more important, this mobile wheeled stander helps strengthen critical motor skills so a child can progress toward independent standing.


Freedom to explore


With the Dynamic Stander’s removable large wheels in place, children can self-propel in a standing position – free to explore their surroundings alongside their playmates.


Freedom to participate
Pop off its removable large wheels, and the Dynamic Pediatric Stander easily rolls right up to a table or a counter for participation in crafts and other stationary activities

 
If anyone knows of a place that loans out mobile standers, other than the spina bifida association, please let me know! 

Some recent photos to share from the Spina Bifida Christmas party, "the box" and more!

Madi loving her box!

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Playing with Conner

Proof that Madi is an angel (look at her hands)

Conner is a soccer star!

Madi enjoying her first toddle system

The new table

David and I have matching ornaments from first grade.  Yup, we were in the same first grade class together!

Madi loves singing, it is so cute!

The ornaments the kids made

Our advent (I think I should have done from 25 to 1, instead of 1 to 25 but oh well)

Iron men

Using and abusing (and loving) our new Costco table

Ready for the Spina Bifida association party

Glendale Glitters

Our new-to-us dog, Titan!  He's just under 6 years old and a great guy!  He's super smart and the kids love him!

The Spina Bifida Association party

Madi's new friend, Owen.  He was great with her!

 Madi loved santa.... once she was in my arms!



What a difference two years makes

When we were decorating the tree this year, I had to stop and pause when I put this ornament on the tree.

I remember getting this ornament two years ago.  I remember barely having time to even get the tree it would hang on, because we had been in the hospital with a shunt infection.  Madi was born on November 11, 2008.  Her first surgery to close her back and insert a shunt occurred in the evening of November 12th.  We were in Phoenix Children's Hospital five days then got released, much to everyones surprise.  Life back at home was a big adjustment, but life good.  It was better than good, it was amazing.  You really appreciate all the little things you don't have when you are staying in the hospital with a child; home cooked meals, your own bed, clean clothes, a toilet you do not have to leave the NICU to use, a shower that is not shared by every other parent that is staying with their child, getting to have your family together, the peace and quiet, not having to breastfeed your baby with an audience wearing latex-free gloves and poking you, and your privacy in general.  Little did we know what was brewing.  Madi's shunt had gotten infected during the surgery and we would be headed back.  This time it was just under 3 weeks.  I remember feeling so lonely and depressed.  The hospital room felt so empty and cold and I missed David and Conner (I wrote this post about it on December 5th, this on the 12th, this on the 21st, this on the 23rd, and finally this when we got the ok to go home).  I remember feeling bad for feeling bad, because so many other kiddos in the hospital were facing months of hospital time, not just weeks, and too many would never make it home.  I remember feeling torn because I knew I needed to be there with Madi, but missed Conner and David terribly.  My mom and mother-in-law were able to come and sit with Madi a bit so I could run home when needed or were able to bring Conner to me, but it just was not the same.  We got out on Christmas eve and got to spend Christmas with our family.  It was amazing.  Words cannot describe how wonderful it felt.  Who would have guessed that now, two years later, life would be so different.  Instead of feeling hopeless, I am overflowing with hope.  Madi is not just surviving, but is thriving and is defying the odds.  Though we had to go back again for shunt failure in a few weeks after her big stay, it has now been almost two years without shunt problems.  TWO YEARS!!  I want to sing it from the roof tops, I am so excited!  I am thankful for all that God has brought us through and I am so thankful for where we are at now.  Even when things feel hopeless, God is there.  He is always there, and he is always good. 

I love finding little things that work so well!

Today we went to Costco and Madi HAD to bring her wheelchair. I mean HAD to. Normally we are reluctant to bring her wheelchair in a store because she gets very excited about doing tricks and showing off and forgets to look where she's going. I am afraid in a grocery store with smaller isles (we do lots of Sprouts shopping), she will knock things off the shelves. Costco seemed like the perfect place to take it, though, so we did. We were zooming around (which, let me tell you, is hard to do when everyone has to stop you and tell you how cute your daughter is or talk to her. Trust me, I don't mind, it's just something I have to remember to plan for. Madi eats up the attention!) and I saw a little collapsible table for sale. It looked exactly the right size for what I wanted for Madi, which was something big enough to eat on, do crafts on, etc... but also easy to store and easy to move around from room to room and outside. I got a little closer and saw it had an adjustable height! I was so excited! I had been looking online and wheelchair accessible collapsible tables are wayyyyyy more expensive than they should be (we are talking at least $90 to $100 for the cheapest and smallest models) and I was wanting a cheaper solution. I adjusted the height and Madi fit under it perfectly. The table legs were not in the way at all.  She also has room to grow with it, which is awesome. The best thing of all, though, was the price. It was just a little over $19! What a steal! I know it's silly, but I am so excited about it! It is this one but was half the price in the store. Madi is very excited about her new table too, which I think is adorable! Pictures to come shortly :).

We are on the charts again!!!

Today Madi had her 2 year well visit at the pediatrician and we are proud to announce..... her weight is on the charts again!!  She was always in the low percentiles (3 or 1) then just fell off all together.  Well, she's back on :).  The doctor was never worried, especially because she looks so healthy and has a little plump to her, but it's nice to have her back on.  Her nice little noggin is always well into the 40 or 50th percentile.... just goes to show you how smart she is ;)

We found it!!!!

Problem solved!  My friend Stacy works as an early interventionist locally.  She read my post about needing something similar to our Christmas tree box that would help Madi with walking and standing.  She knew of someone local that made a product called the First Toddle system.  It is a 5-in-1 system designed to work for babies on up to preschool age children (and even beyond that I'm told).  I e-mailed the company and the owner got back to me quickly.  We talked quite a bit and I decided to use Madi's amazon associates money and give it a try.  It works perfect!!  Today was the first day using it, but Madi really loves it!  In fact, she threw a huge two-year-old fit when it was time to get out.  The nice thing about this system is that it has 3 different height adjustments so it can grow with your child.  Madi fits perfectly right now on the lowest height setting.  I had been contemplating making one for Madi out of PVC pipe, but I loved that this one was pre-made and would grow with her.  I'm all about simple these days ;).  It is a tad shorter (length-wise) than I was wanting, but that's an easy fix.  Early in January, they are going to be adding an extension kit you can buy for a little over $20 that will make it longer.  The owner wasn't sure if using two extension kids would make the product to weak or not, so I think I will try extending it out by 1 first and seeing how that goes, then possibly trying 2 extension sets to see if it is durable enough.  Madi is barely over 20 pounds so she really does not apply too much weight to it.  The one improvement I would make to it would be the width.  The width fits madi perfectly right now and it also fits Conner, but at some point, she will outgrow it  It would be awesome if the width was adjustable just like the height is.  Overall, I'm really happy with it and I'm so glad Madi is too!  I haven't set up the hockey net yet, but Madi is loving the basketball hoop.  I love that it has a little table you can velcro right on top  It's really neat to be able to have Madi up standing and being able to do activities at the little table.  Even though it's small it is still big enough for playdough or coloring, snacks, etc....  I haven't tried the mat that comes with the set yet either, as I have been using a cushioned mat we got at a local consignment store, Hissyfits (LOVE their stuff!!)., but I'll give it a try tomorrow so I have feedback on that part of it too.Oh, and did I mention it is lead and BPA free?  Here is a link to the website (right now they have a 10% off promotion with free shipping):

http://www.firsttoddle.com/

And, yes, you can purchase it on Amazon.com.  Just make sure that you pick which color accessories you want, as you can get pink, blue, or a mixture.


I took a picture of Madi playing in it tonight but I used my camera on my phone which takes pretty crummy pictures.  I'll try to get a few better pictures tomorrow so that it's easier to see how it works.  I love that she once again loves standing and walking!!  Another big "thank you" also for everyone who uses Madi's link when they shop at Amazon.com.  The money we get from there allows us to get things for Madi that would normally be out-of-pocket expenses for us and those really add up fast!  We try to spend the money wisely and use it for things that help improve her quality of life.  It is such a blessing to have it there to spend when we find something special for our special little angel!  THANK YOU!

Who knew a Christmas tree box would do all this?

It has been really hard to get Madi to want to practice walking.  She was struggling with it and was giving up, not really trying because it was hard.  She just could not quite figure it out.  I think part of the problem was that she was still trying to shuffle, like she did in her stander.  We'd been practicing on and off, but not as much as we should have been, as I didn't want to push her.  Yesterday I decided to put her chair out of sight and just tell her it was time to work on walking.  She and I practiced quite a bit, and then she asked to get in the Christmas tree box.  Conner had been playing in it and she wanted a turn.  I put her in and noticed that she had an easier time with walking.  She was taking a few steps on her own, without any help/support.  It's kind of crazy too because I had been fighting and fighting to not get a fake tree.  Finally I gave in this year and we bought one from Michaels.  Who would have guessed that God would have a plan for that silly box?  I called Tami, her physical therapist, and told her about it so she could see her walk in it during her session today (I had to help in Conner's class so my mom was going to be here with her for therapy).  Tami worked with her again today in it and I came home to this....

I had been down the last few days because I felt like I was failing at helping her walk and I did not know what else to try.  Who would have known God would give us such a simple answer!  I am so very proud of my little girl.  It is like the light bulb finally went off for her, and now she understands how to move her body to make walking work.  She is such a smart little cookie!  Now we are faced with the task of trying to figure out how to make her something like the box out of PVC pipe, wood, hand railing, or something of the sort so that she can use it to practice once this box falls apart (which it is quickly doing).  With my dad's help, though, we'll figure it out.  Way to go Madi!

Tonight I was thinking....

Tonight the kids and I were watching a book on storyline online before bed.  While we were sitting there, I looked over and noticed that Madi was slowly leaning over towards Conner, and at the same time, reaching to hold his hand.  Of course, boys cannot hold hands with their sisters, I mean, that's so not cool, so he pretended that he didn't notice, but did let her hold his hand.  Madi put her head on his shoulder, and I saw Conner give a little smile.  Conner is a great brother, he really is.  He is always very concerned about Madi and is always wanting to know that the doctors will not hurt her and that she will be ok.  Yes, they have their moments, but he is so sweet and gentle with her.  There are so many times he asks her if she is ok and tells her, "It's ok, Madi, I'm right here".  He gives her little hugs and kisses when he thinks no one is looking and sometimes he even lets her wear his spiderman costume or play with his favorite toy.  He seems so much more compassionate than many other kids his age.  I always knew that Madi would make me stronger and a better person, but I did not realize how much she would shape who Conner becomes.  I might be a bit biased, and I know he is only 3, but I really think that God is going to use him in a big way, and that Madi will be a big part of the man he becomes.

We're Baaaaaaaaaaaaaaaaaaaaaaaaack

We're back from California and had an awesome time!!  We did Disneyland, Legoland, and hung out at the beach.  Madi was not too fond of the rides at the parks, but thankfully we had brought her wheelchair and she had a blast zooming around and people-watching.  We knew Disney would be busy, especially on the weekend, and we were really unsure about bringing her chair, but it turned out great!  She did love "It's a Small World", but that was about it.  Vacation was fun, but being home is pretty awesome too!  Here are a few (ok, ok, a TON) of pictures from our trip.

Madi LOVED Minnie Mouse!

She also loved trying on hats

Someone made these adorable little gloves for her.  I have a hard time getting her to keep them on, but she is starting to ask for them, finally!

My favorite picture of us together.

Finally giving in and sleeping

Meeting my birth dad and his wife for the first time, very cool!

Dinner with my birth mom and half brother Nathan.  I got to meet him for the first time!  FUN!

He loves writing his name.... on everything!

Oh, I forgot, she also loved the train in Lego Land... the ONE ride she could go on!  

A swing on the beach... Madi's version of Heaven!

Conner's first bubble gum icecream.

I love this picture of David and Madi

Look at the seals in the background!

If you want to see more pictures, I made a little book for the kids.  I had a free book credit, and it sounded like fun.  Here's a link http://share.shutterfly.com/share/received/welcome.sfly?fid=704104a3321218095b2f2841c4d4a52e&sid=0AYtmTFm2ctmbio

And off topic but whenever I post, Amazon suggests I advertize with this CD.  I have no clue what it is, but it is called "The Gift" and I always find it so fitting, because Madi is such an amazing gift!