Playground update!

We have a playground update... wooo hooo!  Yes, we are still wanting to build a playground for the kiddos.  If you have been following our journey, you know that something that seems as though it should be simple really is nothing close to it!  Handicap accessible playgrounds pre-built are super expensive, and many affordable playgrounds are just no where near accessible.  I think that Dana playground, a local company, is willing to work with us to do something custom and I am realllllly praying it will be affordable.  I should have a good answer in the next few days.  After many, many months of searching, phone calls, e-mails, and questions, it is so exciting to be getting so close!  I will keep everyone updated :).  In the meantime, here is a preliminary sketch, without the ramp shown (and some modifications do need to be made to it).  You also cannot see it, but the monkey bars are modified so that they can be wheeled through or used in HKFOs and there will be a modified swing.

A little update from our appointment

We did not get to meet with the urologist today, but we do have an appointment with him in a few weeks.  Because of that, I do not have too many updates, but I do have a little bit of new(old?) information.  Madi still has renal reflux on the left hand side and it is still a level 5, which is the highest grade of renal reflux.  I was realllllly hoping that it had resolved, but it has not.  As of right now, I am not too sure what it all means.  I know eventually it will mean surgery to correct it, but I am not sure when they will decide it is not going to resolve itself on its own and that the surgery is necessary.  Thankfully we have a very conservative urologist who never rushes in to a surgery, so for that, I am thankful.  When we have more information, I will update everyone.  Please keep Madi and her urinary situation in your prayers and pray that we will clearly know the best way to proceed.  I have to share a picture of Madi from today.  She and Conner were playing with Titan, our dog, and were both laughing hysterically.  I had to snap a picture because it was just too adorable. It's hard to have a bad day when you look at this face!

A big day tomorrow

Tomorrow Madi has a urodynamics test and renal ultrasound scheduled (or maybe a VCUG, not a renal ultrasound; for some reason I just cannot remember!).  These are never fun tests because they require Madi to lay still for quite some time and they can be a bit uncomfortable, even with her reduced sensation.  Madi usually starts to cry before the procedure ever even begins.  Just looking at the tables she has to lay on brings tears.  I always bring snacks, toys, and books to try to distract her, but when your life is filled with appointments and those appointments are often not fun, you know what the real reason behind those distractions are.  You learn it pretty early on, sadly.  One of the hardest things about being a mom is knowing that those tests must endured, but wanting so badly not to have to see your child go through them.  On the other hand, I am so thankful that we have these tests.  It actually wasn't until more recently that I realized how serious urinary problems can be for kiddos and adults with spina bifida.  Madi, thankfully, is followed very closely and her urinary issues are under close scrutiny.  Urinary problems can be very, very serious, though.  Here is a bit of information on the topic:

After meningitis and hydrocephalus, renal failure is an important cause of chronic ill health or death. Early and accurate assessment of urinary tract function will, I hope, prevent later and intractable renal disease, which causes a high rate of morbidity and mortality. This problem must be considered almost as urgent as the associated neurological and orthopaedic problems of spina bifida. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1962.tb03173.x/abstract

and

Prognosis varies by the level of cord involvement and the number and severity of associated anomalies. Prognosis is worse for children with higher cord levels (eg, thoracic) or who have kyphosis, hydrocephalus, early hydronephrosis, and associated congenital anomalies. With proper care, however, most children do well. Loss of renal function and ventricular shunt complications are the usual causes of death in older children. http://www.merckmanuals.com/professional/sec19/ch292/ch292c.html

In light of that information, it almost feels silly to get frustrated and complain.  We have so much to be thankful for.  Madi is lucky enough to be born in a time where she can get the help she needs.  As much as I hate these appointments and as much as I hate having to cath Madi and what that means for her, it also means something amazing; Madi is here on earth with us and can live a long, healthy, and happy life.  These tests help her thrive and give her the chance at life that she deserves.  So, while I am not looking forward to tomorrow, I am looking forward, and I am so thankful these tests give me the chance to do so.

Catching up on our photos! Lots to see!

I swear, we DID have a Christmas, and I FINALLY have evidence!  I have been really bad about uploading my photos.  I have a lot to catch up on, so get ready!

Our yearly tradition... baking cookies as a family

She loves to stir!

Silly boy.

They love licking the batter... Madi's HKFOs helped her stand so she could help us.

Christmas with my parents.

Madi's new friend, Woody!

Conner's latest super hero obession; Iron Man.

Madi and her cousin Nathan at David's parent's house.

Madi and her Grams... she loves her!

We tried so many times to get a good picture.  It's hard with 3 kiddos!

Madi's new umbrella.... it is a butterfly.

Conner's new spaceship.

Madi and her Uma have fun together!

Zooming in Madi's new hot rod... a push button Princess car!

Conner showing off his new undees from The Pampered Tush (she thought he needed a little something special, and she was right!  He LOVED them!)

Madi's new stash of trainers from The Pampered Tush.  The snap-in liners are topped with velour and are SO soft!  She loves them!

Conner insisted we take a picture of his new undees, just like I did for Madi's undees.

Happy 4th birthday big boy!

Checking out the stash of gifts.

The card was musical and he LOVED it!

Make a wish!

Strawberry cake, just as he requested!

That's better!

Madi is adjusted correctly and LOVING her mobile stander!  She is doing amazingly in it and is all over the place.  I'm so glad she loves it!

In other news, today is Conner's 4th birthday!  Conner is such a sweet and caring little boy.  He is smart and funny, curious and determined.  We are so blessed to be his parents, and we know Madi is very blessed to be his sister.  Last night I looked over and saw that Conner had cuddled up next to Madi and had his arm around her while they slept.  He is very tender-hearted.  Happy birthday little man!

I think it's official.... Madi's in love!

With her new mobile stander, that is!  When I got home from the grocery store I saw a big box waiting for me.  We were late for dinner, so I was really bummed not to have time to rip the box open and put her in it, but I was good and waited.  As soon as we got home I took it out and was excited to see that it is in very good condition.  Madi saw it and started squealing and yelling "momma, chair!" over and over.  I told her I had to adjust it for her and she got very upset.  She wanted in it NOW.  She is two after all, and she wants everything right now.  I tried to run and google how to adjust it, which made Madi very upset.  She kept crying and saying "momma, help, chair", which was very pitiful.  I quickly found the pamphlet online so that I could get it adjusted and ran back.  I got it half adjusted and started putting Madi in it.  I had her about half in when I couldn't get her to hold still long enough to finish.  I kept having to chase after her to attempt to finish strapping her in, which of course turned in to a fun game.  Madi was zooming all over squealing and laughing.  It was really adorable, and it made the money worth every penny.  I got her in well enough to at least stay in, so I let her be and we just played while she was in it.  Tomorrow I will fix it correctly for her.  Conner saw the box and was in Heaven.  Forget the $500 thing that came in the box, he just wanted the box.  Typical boy, I'd say.  He was very disappointed when I told him that I would not sleep in the box with him tonight.  He found an extra piece of cardboard and told me it was a comfortable pillow for my head.  Then he tried to cover me up with bubble wrap so I'd be warm.  It was very cute.  I told him we could clean out the bubble wrap and he could sleep in the box, but when he found out I would not let him put the box on my bed, then go to sleep in the box, he decided he'd rather not.  Here's an adorable video of Madi with her new Rifton Mobile Stander and Conner with his new box.

Our newest venture.....

We have suspected food allergies for a while with Conner.  He gets frequent loose stools, has bad teeth enamel and teeth problems that couldn't be explained through environmental factors, rashes, gets muscle aches, is restless, and has mood changes, among other symptoms/signs.  We could not pin-point the allergy, and finally got him tested.  We went through our wonderful naturopathic doctor, Dr. Vitaro, to get it done.  Our pediatrician's office drew the blood and we sent it off to the lab Dr. Vitaro uses to get it tested.  We opted for a blood test that gives you both IgG and IgE results. Basically, one shows allergies in the traditional sense you think of them and one shows sensitivities.  Conner got all IgG results, which is sensitivities, but to wheat, gluten, dairy (all forms, including casein), and peanuts.  Instead of cooking separate meals or just making Conner miss out on food items, we will all be following a diet that eliminates his allergies (though I will let David keep his peanut butter, and the rest of us will switch to almond).  Madi also has also now has a rash on her face so I am curious to see if our lifestyle change will help her out in that way as well.  I already cook from scratch about 90% of the time, but obviously I will have to completely re-vamp what I cook and how I cook.  Wish us luck on our new venture, and if anyone has any awesome resources, please send them our way!