Our Walk-N-Roll Fun

This year's Rock and Roll for Spina Bifida was a BLAST and I'm happy to announce Team Madi raised over $600!  GO TEAM MADI!  Here are some photos of our fun...

Madi and her buddy Owen who taught her how to do wheelies...

 

Madi and her buddy, Dr. Segal

 

Face painting

 

Ninja chop!

 

Madi loves Sherri the clown

 

My two cuties

 

Conner, Madi, and our sweet baby K (that I used to babysit)

 

Our gang this year (my mom, David, me, Kyla, Tink, Melissa, Conner, Madi, and Baby K)

 

Rockin' and Rollin'

 

Games and candy... so fun!

 

What's that?

 

Good throw!

 

Our new wheels...

 

... and her tail!

 

Madi with Ron, who makes her HKFOs... she loves Ron!!

 

Our Fun With the Kiwi Crate

We recently discovered the Kiwi Crate, which is a crate that gets delivered monthly with fun new activities to do with your kiddos.  Our first month was the Farmer's Market kit.  The kids really really loved it!!  It came with an apron, fabric crayons to decorate it, lacing fruits and veggies, pretend money to "buy" fruits and veggies from each other, and some extending activities (like making a market bag out of an old tank top).  Though these were all ideas I could have thought of and set up myself, it would have taken quite a bit of time, and it just would not have gotten done. 

Another thing I loved about the kit is that it got Conner doing things that normally would not have interested him (like "sewing" the fruits and veggies).  He loves to get mail and was so excited that he wanted to do EVERYTHING and spent a very long time on each activity!  Here are a few photos of our fun...

This month I forgot to take pictures, but the kit came with the materials to make kaleidoscopes and shadow puppets, and even included flashlights for the shadow puppets. The kids had a blast!!  If you would like to try out the Kiwi Crate, we can both get $10 off our order!  Our link is http://www.kiwicrate.com/Refer?i=JamieV. 

The Walk-and-Roll for Spina Bifida is Almost Here!!

We hope you can join us!  If you plan on walking with us, please make sure to register online so that they have a meal for you for after the walk (there is a big picnic afterwards).  We hope you can make it!

GO TEAM MADI!!

http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=1027278&u=1027278-332052133&e=5950846222

An Update from the World of Neurology and She's Weaned

We went to see Dr. Condie (AKA "The Doctor with Spikey Hair" as Madi calls him), a neurologist from Barrow's Neurological Center that specializes in pediatrics and works out of Phoenix Children's Hospital, for our follow up from Madi's seizures.  Dr. Condie is amazing and answered all of my questions.  He would like to do a 3-day EEG on Madi to see if we can catch some of her odd night-time behaviors (like teeth chattering and the such) on the machine/video.  I let him know I needed it done ASAP before India, and he agreed, so we are hoping to get in by the end of October.  Other than the 3 episodes I posted about, she's had 3 nighttime teeth chattering ones episodes that didn't require rescue meds but that were just odd, and 2 throwing-up during sleep episodes that also didn't require medication.  He's not sure if they are seizures or not, so we are hoping it happens while she is being monitored.  I hope to know the date soon, and we will gladly welcome visitors (especially ones that come with food, since it will be hard for me to leave to eat)!

In other news, Madi is officially weaned (from nursing).  She wasn't quite ready to be done, but momma was.  She has been down to once a day for a long time, so it was an easy thing to cut off.  And, no, I never nursed her standing on a stool, in public past about the age of almost 2, or any of the other things the media says you do when you nurse past the age of 1 that make people look at you like you have 3 heads.  She's been getting constipated more easily now, so I've been slipping in extra probiotics, but mostly she's fared well. 

No adoption news yet, still waiting for those court documents to come in, but we hope to have them soon!  I'm starting the application process for my visa, and trying to keep things moving along.  I will update when I know more!

So How Soon Is Soon?

I heard back from WACAP today and...

Yes, you would need to wait for the court order first and they will then apply for her passport.

I’ll be sending you a travel packet soon. As soon as we have her court document, we can schedule a travel call and you should be traveling as soon as her passport arrives. I would estimate 4-12 weeks for her passport.

 

So what does that mean?  That means I could be traveling to get Ramya home in 4 weeks.  Of course, it could quite possibly be longer, but 4 weeks would be the earliest it could be. 

 

 I am a huge ball of emotion right now.  Everything is starting to hit me and it all is starting to feel so real.  I am so excited and thankful we will finally have her home, and I cannot wait for her to be here.  I am stressing about the things that need to get done, and am trying to take that one day at a time and just get my butt in to gear working hard(er) to get things finished.  I am nervous and scared about attachment and all the possible issues there.  I am overwhelmed thinking through Halloween, Madi's birthday, the walk-and-roll for spina bifida, Thanksgiving, Christmas, David's birthday, and Conner's birthday, and bringing home Ramya right in the middle of it all.  I am praying we get answers to what is causing Madi's seizuring before I get her, so that I dont' have to stress about that as well.  But, most importantly, I am amazed at how God has orchestrated everything to get her here and am thankful for His perfect plan.

 

So, if you see me within the next few weeks, and I look very frazzled, that's why!  I ask that you please give me grace and understanding during this time, and say a little prayer for all of us.  If you offer to help me, I will likely take you up on that offer.  If you can paint, hang things on walls, cut out blog entries for Ramya's adoption book (I have them printed), organize things, or play with my kids, I will hunt you down and ask you to come help ;).

 

So that's that!  I will update again when the court documents are received. 

I'm Hyperventilating Right Now!!!

I just heard back on our adoption (I had e-mailed and asked if we needed one more court date and then the passport, so I could estimate a time frame) and was told...

From Sherly’s email, it sounded like your court hearings are all done. She also stated that you should be granted full and final adoption which is great!  We would still need to wait and see the actual court decree to confirm everything.

 

Do you know what that means??  That means we could have Ramya home SOON!  SOON!!  AHHHHHH!  I am so excited, but freaking out because we have so much to be done still.  I'm glad it takes a village to raise a child, because I'm going to need that entire village here helping out to get ready!  I am so thankful right now for answered prayers!  God is SO good!

An Update On Our 2nd Court Date!!

I just got an update from our adoption counselor (never sure what to call her ;)).  It came through at 10:30 pm, so evidence of how hard that woman works!  She said...

I just heard back from the orphanage that court was held for Ramya and they're just waiting for the court order. Ill update you on more as I hear from them.

 

So basically, one more court date and our adoption will be official and all that we'll need after that is Ramya's passport.  That can be quite a long process as well, but we are so excited to be getting so close!!!  Come celebrate with us!

If I Had Known Then What I Know Now...

When we first found out Madi had spina bifida, we worried and stressed a lot.  I cannot even tell you how many tears I cried.  I didn't understand spina bifida, and the doctors were only telling me worst-case scenarios, forgetting to tell me that first and foremost, we were having a baby.  A beautiful, perfect, and amazing baby that would bring more joy and love to our lives than we ever imagined possible.  If I had known then what I know now, I would have saved that heartache and tears and I would have focused on enjoying every second of my pregnancy.

This is a theme you hear a lot in the spina bifida community, and that is, "If I had known then what I know now...".  In honor of spina bifida month, I want to share with you what other moms, dads, and individuals with spina bifida themselves had to say in answer to the phrase, "If I had known then what I know now....".  If you are a parent receiving your child's diagnosis, I pray these words will help you through this time, giving you hope, direction, and focus.  If you have spina bifida yourself, I hope these words will give you strength, encouragement, and direction too.

If I had known then what I know now...

 

 

• I would not have worried about the what ifs....and enjoyed the right nows!
• I would have never googgled sb or anything that goes with it and enjoyed my pregnancy to the fullest!
• If I had known then what I know now I would not have let sb make me so nervous and stressed out. I knew how much I loved being a Mom and that should have been my focus. I would have researched about therapies, playgrounds and activities for children with special needs rather than researched sb itself. The information on the Internet is scary and leaves little to no hope. What I did know was I had no control, God was in charge the whole time and was blessed with a beautiful gift from Him.
• I would have talked to an experienced parent and not retreated into a shell. I thought that meeting other parents with children would make me more stressed, but has actually put my mind more at ease.
• If I had known then what I know now I would have put my foot down for pointless tests, Dr. appts., and treatments. I would have demanded caring and kind nurses and Dr's instead of allowing them to add to my stress and worry when my son was little or for dismissing my fears and concerns or my sons cries of fear and pain. Although it didn't happen often, it did happen and I wish I would have been the assertive, outspoken person I am now. I would have been more focused on him and not on the goals. He is a beautiful, vibrant, intelligent child ( and always has been) and I have finally learned to relax and enjoy every second because I know now, I can't fix everything ;-)
• I would have been unable to hide the smiles in anticipation of holding my baby boy, SB and all :)
• I would of stressed less and let God work...I would of probably been more open about talking with others not many knew about Nevaeh having SB until she was 1 1/2
• I would have been WAY less afraid of her needing a shunt. She got one placed at 4 months after the neuro decided it was time, and it seemed to really help her. The revisions I was so worried about also turned out to be no biggie. She needed 1 at 9 months and 48 hours later you couldn't even tell she just had brain surgery (except for the bald patch lol). I took a video about 12 hours after she woke up and she was herself right away. http://www.youtube.com/watch?v=sX6ClDkameA&feature=plcp
• I would have been more willing to share my weaknesses with others and asked for help instead of trying to live up to the "superwoman" image that others placed on me because I refused to be transparent about my fears.
• I would have loved myself sooner. I would have accepted the pint-sized, limpy, goofy, tye-dyed leg brace wearing, funny, awkward girl that God made me to be, way sooner than I did. I wouldn't have worried so much what people thought of me. I like me. Who knew? I'm kinda neat!
• Would have valued myself more and let myself know that I was a good person.
•  If I had known then what I know now I would have respected and appreciated my body more. I hated my body growing up. Poor self-image and a lot of self-hatred. I now love myself and feel worthy of love. I never felt that way growing up. I couldn't give a flying whoop what people think of me now and if I want to go swimming and show off my scarred legs, I'm gonna do it. I'm not gonna let a bunch of strangers and self-doubt stop me. :)
• If I knew then what I know now.... I wouldn't have spent so much of my childhood ashamed and trying to hide the fact that I had sb and was "different" from other kids. I would have fully embraced it and instead of hiding, would have educated. I would have been honest with my friends and instead of telling them I had to go to the nurse every few hours for "kidney meds", I would have told them the truth about having to cath. I would have listened to my docs when they told me how serious an infected ulcer on my foot was. I would have agreed to the amputation years ago instead of waiting until the infection was so bad it almost killed me. Most importantly, I would have made more of an effort to meet other people with sb so I didn't spend 30+ years feeling like I was the only one who would ever understand what I was going through. lol I guess that's why they say hindsight is 20/20.
•  I would not have cared what everyone else thought.
• Had an easier time in school, and probably gone on to be a veterinarian like i wanted to when i was younger.
• I would not have stressed so much during my pregnancy and looked for a support group sooner than I did. I thought we were the only people around with a child with SB and that is not the case at all. Also, I would not have googled neuro tube defects when that is what the OB said my daughter had before I went to see a MFM. It was very scary to read about those and think that the baby I was carrying fell into one of those categories but I knew I was going to keep her no matter what.
• I wish I could have seen a baby with Spina Bifida, my pregnancy would have been so much better. Just knowing that Ciarlo is just a baby who happens to have Spina Bifida
• I would have... Not stressed so much I would have treated him like a typical baby!!!! Because he is
• I would have been less shy,more outspoken, less fearing,more responsible and independent.