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Do you shop at or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps!

Wednesday, March 24, 2010

Oooh, now THIS is cool!

David wants me to wait on getting a trike attachment, because he thinks it's more temporary and he'd rather have me get something more long-term.  Though I love the idea of them being able to ride together, I do see his point.  Today I found this...

and I LOVE it!!  It's so cool!  So my newest plan is to save, save, save, save, and try to get that within the next 4 or 5 months using her Amazon money and what I can save up from any 'extras' we have in the budget.  WOO HOO!  Is it crazy I'm so obsessed and excited about these things?!?!?!?!?

Tuesday, March 23, 2010

Woo Hoo, we found something COOL and AFFORDABLE!

Today when Tami, Madi's physical therapist, was over, I was telling her about a tandem tricycle I had found and was wanting to get.  It is $350, though, so it was going to take a while to save up for it.  She told me about a very cool tandem attachment for the Kettler Trike, which Conner already has, and helped me find it.  We already have enough Amazon Associate money saved up to buy it, and I am so very excited!  I am going to request her Amazon money so that we can purchase it for her.  Here is the insert and the harness that we will be getting....

We still want to save up for a Tumble Form Ready Racer or an AmTryke, which are both little bikes she can operate by herself and are made for children ages 18 months and up, but this will be a great option for her in the meantime.  Conner and Madi can ride together for walks, in the back yard, etc... and Madi can feel like a big girl, doing what her brother does.  She ALWAYS wants to be like her big brother, which is awesome but also challenging when the equipment to help her be independent like she wants to is so darn expensive.  We are trying to search for a place that lends out AmTrykes or Ready Racers, or a used one to purchase, and hope to find one that way. 

Be on the lookout for pictures of Madi cruising around with Conner, I just know she's going to love it!  Kettler Tandem Insert, $70.  Kettler Seatbelt, $18.  Seeing Madi and Conner play and laugh together.... PRICELESS!

Saturday, March 20, 2010

Who wants to help me search?

I would love to find something for Madi that she can use out back, around the block, etc... to move herself around.  Walks have been a challenge because Madi doesn't want to be in a carrier any more.  She wants to be down, doing what her brother is doing, and who can blame her??  The problem is she is not even 18 months old yet, so she needs something designed for younger children.  I found something that looks very cool, but WOW, I cannot believe how much they want for it!  Some companies really take advantage of the lack of options out there for children with special needs, and it is terrible.  This is what I found...

It has a handle so you can push it if you need to, but the child is also able to move the wheels themselves with their hands/arms to get around.  I think Madi would love somthing like that, but obviously we need to find a cheaper option.  Our Amazon money is starting to add up, but not quite that much ;).  If anyone either knows where to get one used, or something else that might work but costs less, PLEASE let me know! 

On the plus side, someone from church has a intramuscular stimulator that might work for us, so we can use that and not need to purchase one, if it is in the frequency ranges that we need.  That would be very awesome if that works out!

Tuesday, March 9, 2010

Update on the Neurosurgeon Appoitnment Today

Madi is officially tethered, which I really already knew.  It is not too bad, and it is lower down her back, but it is there.  Dr. Moss said that Madi is kind of in the grey area where she might benifit from a cord release, but at the same time, it may not be a huge necessity.   Our decision was to wait another 4 or so months, check her bladder/reflux again, and see if it has gotten better or worse.  There are basically 5 reasons to de-tether a cord, and Madi only has 1, but it's a big one.  Our goal with her bladder/kidneys is obviously to protect her kidneys.  The tethering may be why her renal reflux worsened.  If the cathing (we do this every 4 hours, so it works out to about 4 times a day) does not help her reflux, we will consider a detethering surgery.  This could be the only surgery she may need, or she could go through it only to tether again.  He did say that the rest of her spine looked good.  There were not "water" pockets up it like some children have.  Overall, things looked really well.  Thank you for keeping Madi in your prayers! 

Oh, another huge answer to prayer.....  Shriners is flying Madi and I down to their Las Angeles center in May to evaluate her.  If they decide that she is eligible for Shriners, they will help with some of her surgeries as well as standers, AFOs, and other items (not wheelchairs, though).  We will fly over on Thursday,  May 13th, stay that night, be evaluated on the 14th, and fly home that evening.  So that we can save money on airline costs, it will just be the two of us (Shriners is paying for my airfare, so our only cost will be hotel and food, but they only pay for one parent.  They offered to pay for David since Madi is still free, but we decided I would just go by myself).  They will also send a van to get us from the airport so we will not need a rental car.  I will stay with Madi in a hotel or, most likely, a Ronald McDonald house.  If they accept her, we can go to the local traveling Shriner's clinic in the future.  They do not have pediatricians at that clinic, though, so we had to go to LA for the initial evaluation.  If anyone is looking for a place to donate to, Shriners is it!  They are amazing!!

Wednesday, March 3, 2010

We're hoooooooooooooome

We are officially home from the MRI and Madi did really well.  I felt so bad because she had to go NPO and kept signing to me that she wanted to eat, but overall, she did great.  I held her as they put on the gas mask and she fell asleep.  I was supposed to be there when she woke, but she woke up about 30 seconds too early and really mad that momma wasn't there.  A little milk and she was a much happier baby.  She has decided naps are for wimps and won't nap today, but she's happy and playing and that's all that matters!  Tuesday we see Dr. Moss and I will have an update as far as if she has a tethered cord or not, and if so, how we will procede.  Thank you for your prayers today and please keep sending them our way!

Tuesday, March 2, 2010

Tomorrow is the big MRI day!

Conner loves his sister very much!  She is lucky to have such a kind and loving brother!

Tomorrow is Madi's big MRI to check and see if she has a tethered cord.  Please keep her in your prayers.  She will be under anesthesia, which I hate, but I don't want her to be scared either, so I know it's a good thing.  It should take about 45 minutes for the actual scan, but we are supposed to get there an hour early, and I am not sure if they will keep us for a while afterwards.  Her scan is at 11:30 at Phoenix Children's Hospital.  We then see Dr. Moss next Tuesday and he will tell us how to procede, or if there is even a problem.  I am praying her cord is not tethered, but if it is, then I know that's in God's plan.  I will update you all as soon as I know something.  Have a blessed rest of the week!