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Thursday, June 24, 2010

Now to wait....

Getting Measured

Sittin' Pretty

Today Madi got fitted for her very first wheelchair.  Everyone was tickled at how little she is.  As soon as she saw the chairs, she insisted on sitting in them.  The first thing she did was put her hands down to wheel the chairs.  She knew just what she needed to do!  I think she's going to catch on quick!  We chose a pretty, bright pink for her chair.  There were lots of color options, but Madi did not really care what we got.  I was thinking purple, but the purple they had was not very pretty.  My mom and Tami were hooked on pink, so that's what we got!   The bummer is that it will take about 3 MONTHS to get.  3 months!  That's insanely long!  Oh well, there is nothing we can do to speed it up, so there is no reason to worry about it.  I want to make her some kind of little cute korker bows to go on her handlebars.  Her chair will be a bit different than those in the pictures.  She will have higher bars for me to push her, leg guards so her legs do not rub, and a little headrest.  Because she has pretty good upper body control, the back height will be just about the same, maybe an inch higher or so. 

Conner spent the morning with his grandma, grams, at the Harken's summer movie event.  They saw Alvin and the Chipmunks together.  He had a good time with her, and it was nice for them to get some time together.  I know when we bring the chair home, though, Conner will be all over it!!

Wednesday, June 23, 2010

It's Just Like Christmas!

Well, tomorrow is the big day...  Madi goes to get fitted for her first wheelchair!!  I am so excited for her.  It is just like Christmas!  I think we'll get a purple one, but we'll see what Madi likes best.  I will, of course, let her choose.  I will try and take a few pictures too.  I am still out a camera, but do have my trusty phone.   My big girl is just growing up too fast!

This is an old picture of Madi with her grandpa, my dad.  She calls him "papa" and sure does love him!  She talks about him all the time and lights up when she sees him.  She loves to cuddle with him, give him kisses, and pat him on the back. 

Friday, June 18, 2010

Yesterday Madi had a urology appointment with Dr. Zuniga at Phoenix Children's Hospital. She had her 6 month urodinamics test, which looks at how much liquid her bladder can hold, as well as how it functions under high pressure. He was happy at how she functioned under high pressure and said that it indicates her bladder is not rigid, but has some flexibility. This is a good thing because she has renal reflux and a rigid bladder will push the urine back up the ureters instead of emptying. Hers, however, empties, which is great! Her bladder still does not hold as much as it should, though it did grow, which is good. He thinks we may see good long-term benefits from using dithropan. We are going to start her out very, very slow and see how she reacts to it. He said that dithropan is most important when they are little, though, because it helps increase the bladder size and will help it to grow normally. I talked to the naturopathic doctor and, unfortunately, there is no natural replacement for it, so we are not left with too many options. The reason to give it, though, is that if we can get the bladder to grow normally, she may be able to avoid a bladder surgery in the future, and of course, any surgery you can avoid is HUGE. Also, once you perform those surgeries, you are cathing for life. She may have to cath for life anyway, but at least we have a chance of changing that right now. 

Madi did a great job during the test.  I stay and talk/sing/play with her during it, which helps.  They turned on Finding Nemo for her, and she was fascinated by the fish.  I also brought a little bit of "baby bribery", aka organic chocolate chips.  She LOVES chocloate and it really helped keep her happy and in one spot.  Overall, it was a good appointment!

(Ceretta's Mint Chocolate Face)

Tuesday, June 15, 2010

What's Up In Our World....

(Madi and grammy at my b-day party... Madi loves her grammy very much!)

Tomorrow Madi goes in for a urodinamics test to see how she's functioning with the new cathing routine.  I'll have to wake her up from her nap to make it, so that will be interesting!  The doctors was great, though, and approved a later time to allow her to sleep a little longer.  I think I'll bring some mini chocolate chips, aka, baby bribery, to help pass the time while she's laying on her back for the test.  Next week on Thursday, we take Madi to get fitted for her first wheelchair!!  How exciting!  Madi will be zooming around in no time!  I think Conner's going to have a little wheelchair envy going on too ;).  Tami, Madi's physical therapist, said that we will get to pick lots of fun options and colors for her chair, which is very cool.  We will also get a bath chair for her.  I always get in the bath with her, but sometimes holding her while washing her and Conner is a bit of a challenge!  This should allow me to be "hands free" when I need to be.  Madi will get a new walker too, which I'm excited about.  She is currently borrowing one from Tami, but will get to have one of her own.  The one we are ordering swivels, too, so it will make it easier for her to get around.  On November 11th, Madi's 2nd birthday, she will get a prescrption for either HKFO's (leg braces that go up through her hips) or RGO's (braces that include a cable to help her "pop" up her leg) so she can be even more mobile.  There are lots of exciting things headed our way, and we couldn't be happier!

Family Photos 2010

Thursday, June 3, 2010

We have a new look!

(Madi in her new (The) Cure onsie)

In case you haven't noticed, Madi's blog got a much-needed makeover.  Isn't it adorable?!?!?!!?  I LOVE it!  One of our friends, Chelsea, did it for us and did an amazing job, if I do say so myself.  She does custom graphic and digital design work (logos, business cards, stationary, cards, blog design, and much more), so if you are in the market, check her out!  She is awesome to work with, completes her jobs quickly, and is very creative.  Her website is and you can e-mail her at to discuss your project.  Thank you Chelsea!!!