The Walk-and-Roll is Almost Here!

The Walk-and-Roll for Spina Bifida is almost here!  Please join us!!

 

To join or donate, please go to: http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=1027278&u=1027278-332052133&e=5950846222

 

GO TEAM MADI!!

 

 

 

TUESDAY TUESDAY TUESDAY!

Can you tell I'm excited about TUESDAY?  Tuesday, the 25th, is our next court date!!  Please pray that the judge is at court on our date and that everything gets processed quickly. Better yet, pray everything gets done and we don't need a third date ;).  We can't wait to be one step closer!!

You Know Someone In Your Family Has Spina Bifida When...

-You find a catheter in the dryer (that apparently went through the washing machine)

- You hear things like, "Titan (our dog) is sick!  He needs surgery!  Let's do surgery on him!"  Or better yet, when your kiddo tears a sticker, you have to do surgery, STAT!

- You check your purse and you only have $1, but you have 3 catheters.

- You are a ninja and can cath a child in their sleep without them waking, and this becomes a bragging point.


- You get so excited about latex-free bandaids in cute designs that are cheap at walmart that you buy 4 boxes and put them in your children's Easter egg baskets.

- You get VERY excited about an offer in your child's monthly cath order for a free cathing mirror.  So excited, in fact, that you have to run and tell all your friends who also have spina bifida or someone in their family living with spina bifida.

- You find yourself running accross the room, while everything moves in slow motion, yelling "NO!  Don't put that catheder in your mouth!  We just used that one!"  Luckily you make it just in time ;).

- You find yourself explaining that a catheder, even a clean one, is not a straw and not to drink out of.

-You wander in to your half-lit bathroom to brush your teeth before bed and don't realize someone stuck the lube container in with the toothpaste containers.... until you have already started brushing with it!


Add your own to the comments below!

And we have seizure 3

Friday did not turn out quite how I had imagined.  Madi was randomly awake from about 12:30 until about 1:30 am, then awoke at 7:10ish dry-heaving/seizing.  This seizure was different from the other two and it took me a while to realize what was going on.  After dry-heaving, Madi fell asleep.  She awoke, though, and was responding, but was slow to respond.  Then her eyes started blinking a lot and I knew for sure (well, at least I think I do ;)) that it was a seizure.  I gave her the rescue medicine I have for her, since her seizures are long and complex, and she quickly fell asleep.  When she awoke, she was back to her normal self. 

I've already talked with the nurse at the neurologist office, the pediatrician, and our naturopathic doctor, and missed a call from the neurologist (darn that terrible phone reception!!  Time to get a new cell phone carrier!!).  I am also waiting for a call back from the neurosurgeon.  Thankfully, though, this seizure did not bring any paralysis and did not land us in the hospital, nor did it necessitate a 911 call.  I am just really bummed that it came at just 2 1/2 weeks after her last one, and while she is on her daily seizure medication. 

Seizures aren't fun, that's for sure. I find myself stressing about when the next one will be and being afraid to let her out of my sight for any length of time. If she is slow to respond, because she's tired and spaced out, or she's dreaming and twitching in her dream, I fear the worst. What also makes it hard is that each of her 3 seizures have been quite different.  David and I finally got out for a date night to the movies, but we couldn't get cell phone reception and couldn't relax without it, so we had to walk out and get a refund.  We ended up going out to dinner and it was still nice to be out together, but it's hard to be worrying so much. 

For the last few days I've had the Beatles song that says "Life Goes On" running through my head.  Though this onset of seizures is hard on mommas heart,  I know that God is in control and has a plan. We choose not to sit at home, but to be out and active, to continue our daily activities, and to try and live our life to the fullest.  We will learn to adapt and handle our new changes in life and not let them keep us from enjoying our time together.  Life goes on, and for that I am so grateful. 

I am praying we can get her seizures under control so that she can go back to being seizure-free. Please be praying with us.  Please also pray for wisdom for us and for the doctors as we learn how to best how to control Madi's seizures.

So Many Updates!

Last week Madi had her first week of preschool and Conner had his first "official" homeschool week.  Both the kids had a blast and are loving learning!  Conner is enjoying some of the "perks" of homeschooling, like wearing pj's to school and finding critters to "study".  We had a slower introductory week and he really loved the activities, as well as some one-on-one time with momma.  Here he is with a little frog we found in our pool....

 

 

Conner on his first day of school...

 



Today Madi and I taught her class about spina bifida (in 3-year-old language ;)).  We read "Right Under My Nose" and when we got to the part about scars, Madi insisted on showing everyone hers, which lead to lots of excitement while the kids attempted to find scars (cuts and bruises mostly ;)) on themselves.  It was chaos, and oh so fun.  We talked about how Madi's wheelchair is kinda like shoes.  It looks cool and helps her go fast, just like our shoes do, but it's not a toy to play with, just like our shoes aren't.  I think they mostly got it ;).  I also let them take rides in the wheelchair we have waiting here for Ramya (that's a whole different story I need to post one day!!).  Madi was so pumped about talking with the class and got really in to it.  I loved how excited she was!  Here is a picture of her today (yup, sorting skittles but holding fake cheese... that's my girl!)

 

 

Here's Madi in a huge mound of dirt she (proudly) climbed:

 



We also have some news about our second court date:

I just heard back from Vathsalya who informed us that your 2^nd court hearing is posted for September 25^th. Fingers crossed, this will go through quickly. I will let you know as soon as I hear back from them on your case. 

 

 

Please pray that the judge is present, everything that needs to get done does, and that we will get our third court date quickly after or, better yet, that they will get it all done in just the two dates.

 

In other news, I'm in my third trimester.  No, I am not pregnant (gotcha!), but if adoption has trimesters, I'm in my third.  I'm anxious and excited and nervous and just a huge ball of emotion.  I am also nesting, big time.  I have this huge urge to get everything done around the house that I need to (which is a crazy big amount so if anyone is bored and wants to come play with my kiddos for a few hours so I can work, I will be forever in your debt!!).  If you come visit my house, I will likely try to send you home with something.  I want this baby de-cluttered!!

 

That's all that's going on in our neck of the woods. I hope to have more updates for you soon!