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Do you shop at Amazon.com 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! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Wednesday, August 28, 2013

And we have... puberty

We went in to the endocrinologist to get the test results from Ramya's outpatient procedure a few weeks back.  Turns out Ramya is in full blown puberty.  Sigh.  It's hard to look at a sweet little girl who is 6, but mentally about half of that, and think about puberty.  It's just not... natural.  The doctor want us to get Ramya an MRI to make sure she doesn't have any cysts or masts that could be triggering it.  Most likely is from her hydrocephalus, but they don't want to just assume it is miss something, so they want to check and make sure.  I know that Dr. Moss, our neurosurgeon, wanted to check her for tethering in about 6 more months, so I'm going to see if we can go ahead and just check both things at once, since I'd hate to sedate her twice. 

The doctor wants to start her on a low, steady dose of hormones to level out her hormone spikes and gave us a few options.  We are looking in to those now and trying to figure out what is best for her.  If anyone has any advice there, please let me know!

Though It's hard to think of Ramya going through puberty so early, I'm actually quite relieved to know why she's developing so that now we are able to form a game plan on how to stop it.  I was more worried that her tests would come back fine and we would have no idea what was causing it.  Now that we know what it is, we know how to handle it, and that is awesome! 

In other news.....  we have been homeschooling now for almost 3 weeks.  I was feeling discouraged because Ramya and I will spend an entire week on one letter/letter sound.  We will write it on the whiteboard, play starfall games about the letter, do handwriting games that tell the letter word and sound, practice it multiple times, read alphabet books, write it in salt, write it in sand, form it out of manipulatives, make it out of play dough, cut pictures out of magazines that start with the same sound, etc.... and when Friday comes, or the week has passed, and I show her the letter again and ask her what it is, she will often say, "I don't know."  I was encouraged, though, when I saw her write the letter "A" on our whiteboard all by herself AND tell Madi it was the letter A.  Go Ramya!!  God knew just the enocuragement that I needed and I'm very proud of her!


Today we had ice cream... YUM!!  Ice cream makes everything better!
 

Tuesday, August 27, 2013

Get Your I Love Someone With Spina Bifida Decal... And Support Team Double Trouble!!!

 
 
Do you love someone with spina bifida (AHEM... like my amazing girls ;))?
 
Do you want to help support Team Double Trouble in this year's Walk and Roll for Spina Bifida (uh, yes, who wouldn't?!?!?!)
 
Well, then I have the PERFECT thing for you!  It just so happens my wonderful friend Camille created this awesome "I love someone with spina bifida" decal AND she is donating a portion of every purchase to Team Double Trouble!
 
So what are you waiting for?!!?!?  Go purchase yours today!  Just follow the link below...
 
 


Wednesday, August 21, 2013

A Quick Medical Update

Let's see, where to start....  A few weeks back I had to take Ramya to Thunderbird hospital outpatient center for some hormone testing.  She needed an IV (boo...) but did well with it.  With her dark skin and skinny squiggly little veins, they had a bit of a hard time getting started, but were able to only poke once, and numbed the area first so it wouldn't hurt too bad.  She held my hand and snuggled in to me and did well.  The whole test took about 2 hours, from set up to completion, so not too bad.  We watched TV, played ipad, played with toys, etc... We will have the results next week when we go see the endocrynologist.  All her blood tests have come back good so far, so they aren't sure why she's developing so early.  Hopefully this test will give us some more answers.



Last week Madi went in to be casted/fitted for a new set of HKFOs.  She got her last pair about 1 1/2 years ago and they just can't be adjusted any more for her, so it was time for a new pair.  She picked plain old pink, with ladybug decals.  We go in the second week in September to pick them up.  It's great timing too because then... we are off to Disneyland!  Wooo hoooo!
 
 
 
 
 

Thursday we head down to see the urologist.  Madi's vesicostomy is getting very tiny, and I'm afraid it might close up.  I want to have him look at it and make sure he doesn't want us putting a cath in there a few times a day to keep it nice and open.  Thankfully it seems to be working well and it doesn't bother her.  She's figured out how to SHOOT urine out of it when she's sitting on the potty, though, kinda like a squirt gun.  She thinks it's hillarious.  Oh the joys of 4 year olds :). 
 
Oh!  I also got a call today that our shower chair will be delivered on Thursday!  I'm so excited!  It's been a really long wait to get it, but I know it will be worth the wait.  I can't hold Madi (or Ramya) in the shower any more, due to their weight and being slippery, so this will allow them to take showers again.  Yeah!  I'll post pictures as soon as we get it I'm sure :).
 
That's all for now!  I'm beat and off to bed.  I hope you are all having a blessed week!

Tuesday, August 20, 2013

Sealife Homeschool Day

Every quarter our local SeaLife aquarium has a homeschool day.  There is a discounted rate to get in, and then they also do a fun activity.  This time was dissecting fish.  I made it later in the day so that David could go, and we met our friends there as well.  It was a lot of fun!  It was also on our first day back at homeschooling, so it was a nice fun way to celebrate.  We had also done a back-to-school scavenger hunt early in the day, so the kids were having a blast!













 

Our house is always a dance party!

One thing we love to do in our house is dance!  It seems that every day turns in to a dance party.  Here are just a few cute recent clips of the kids. 



Tonight at dinner I set the table with flowers and candles, but somehow the music got turned up, and it turned in to a dance party...
 
video
 
video
 
 
And this is what happens when you put on music from India...
 
video
 
 
 


Sunday, August 18, 2013

Such a hard post to type

(deep breath)

I have a post I've been putting off because it's not a happy one, and every time I think about posting, I get tears in my eyes.  I have many happy posts to post too,  but can't bring myself to post those either, because I know I just need to get this out.

These past few weeks have been stressful.  David works in the stock market and had a huge draw down on his positions.  It's the worst he's ever had.  As you can imagine, it was quite stressful for him.  We had a lot of other things going on as well keeping us busy as well. For as long as I've known David, he's had anxiety.  It was well controlled through his medication, thankfully, however, when things started going badly at work, he started having a hard time again.

Having him so stressed out showed us not only that we are overdoing it, but also that we really need to try to get to the core of the problem and work through it.  We've decided that, for now, we need to cut back on anything and everything extra.  We need to reduce the stress and busyness in the house as much as possible, and focus on strengthening our foundation again, as a family.  David is planning to go to a counselor to learn strategies to help him deal with anxiety/stress, as well as the thoughts and feelings behind it. 

We are feeling it is best to take a step back from our adoption of Deena (as well as some of our Church duties, and other "extras") and focus on getting him healthy and happy again.  We do both still want to adopt, and feel very strongly about it, but feel that maybe stepping back for 6 months or so will help us strengthen our foundation again, so we can be everything that our 3 kiddos, as well as the child we will bring in to our family, needs.  This was one of the hardest, and most emotional, decisions we have ever made.  We both love Deena and feel strongly about adopting her, and the thought of her sitting there waiting makes our hearts ache.  We have both shed many tears over this.  We will pray, for Deena's sake, that another family steps up to adopt her, as the thought of her waiting 6 more months is very sad.  She is such a sweet little one, and we pray she finds a family soon, even if it is not ours (she doesn't know we were trying to adopt her).  However, if she is still available when we feel we are ready to go forward, we would still like to proceed and try to adopt her. 

This weekend we hunkered down and just spent time together.  We watched movies, made pizza, swam, played games, and basically had very little "to do's".  It was just what we needed!  We are working on making sure we have lots of "us" time to just enjoy each other as a family, which is just so important.  Though stress and anxiety is never fun, it is bringing us closer together and showing us what really matters, and we are very thankful for that.

Please be praying for our family, as well as for Deena, as we work through this time.  We are thankful to have so many people loving and supporting us through it, and trust that God has a perfect plan through all of this. 





 

Tuesday, August 13, 2013

Back to school fun.... make a plate



I’ve just been given the opportunity to review the Make A Plate Art Project and I’m looking forward to sharing it with you. If you want to follow along, my readers save 30% on their Prepaid Art Plate Kit (that’s a savings of over $5!) - USE PROMO CODE: USFAMILY at http://www.makit.com/ProductDetail.aspx?ProductCode=K1100PP



Makit has been in business for over 40 years. Make A Plate kits allow children to let their creativity soar in crafting a lasting gift for Mom, Dad, Grandparent or teacher. All Make A Plates are nontoxic, BPA-Free, dishwasher safe and proudly made in the USA.
 
We can't wait to get ours to make!  I want to do the kiddos hand and then let them decorate them :).
 
 
 
 
 

Saturday, August 3, 2013

A Quick Prescott Trip Today

Our pastor recently told us about a woman (Tiffany) who had, tragically, lost her boyfriend in the Yarnell fire.  She is due within the next few months with her first baby; a girl!  I can't even begin to imagine how she feels, she must be feeling so many different emotions right now.  It breaks my heart!  Our neighborhood group wanted to bless her, so we collected baby girl items and gift cards for her at our Church, Imago Dei.  Today we set out with another couple and their kiddos to deliver the items to her friend (Tiffany was feeling very overwhelmed/busy, so her friend who coordinated it all felt it would be best to meet with her, and then she would give the items to Tiffany for us).  We decided to make a day of it, and had a great time!

After delivering the gifts, we headed to the Heritage Park Zoological Sanctuary.  A sweet woman in a group I am on had given us a groupon that got all of the kids in free (even our friends two boys), plus David and I.  We had a picnic lunch there, walked around and enjoyed all the animals, played in the sand, and really enjoyed ourselves!




 
 
Next we went to downtown Prescott and spent some time walking around.  We had a yummy dinner at a great place called The Raven.  They use a bunch of organic, locally-sourced ingredients and had really good food.  After that we walked to a little brewery for a locally made beer, then we were off to the ice cream shop for some homemade ice cream.  We took the ice cream across the street, where they had a live band playing in the center of town, and enjoyed eating while we listened to the music.  There was, of course, lots of dancing by the kiddos :).
 
 
Ramya is a HUGE ice cream fan... smart girl!
 
 
 
(please excuse the fact that my flash was off, but her smile lights up my camera without it, just be patient :))
 


video
 
All 3 kiddos fell asleep in the car on the way home, so I carried them in to bed.  They had a blast, and it was great to escape for the day.  Poor Davids had a reallllly rough two weeks at work, and even he was smiling :).  I hope you all had a wonderful day as well!
 

Friday, August 2, 2013

Playdough Fun!

I'm always trying to find fun things for the girls to do in their leg braces to encourage standing.  The kiddos were almost out of playdough and were wanting more, so we decided to get packets of kool-aid and make kool-aid playdough.  It's not edible, but it does smell really yummy, and it comes out with nice colors (except for the yellow... we could barely see that one).  My kids have never had kool-aid to drink, so they now think the purpose of kool-aid is to make playdough, and I'm totally ok with that :).  We used this recipe from http://www.the36thavenue.com/2013/03/kool-aid-playdough-recipe.html:

Author:
Recipe type: Playdough
Serves: 6

Ingredients
  • 1 Cup Flour
  • ¼ Cup Salt
  • 1 Packet Kool-Aid
  • ⅔ Cup Water *You will end up using between ½ and ⅔ cup.
  • 1 Tb. Oil
 
Instructions
  1. Mix the flour, the salt, and the Kool-Aid together.
  2. Boil the water.
  3. Add the oil to the water (we added our oil after we added water.  We started with 1/3 cup water, mixed, then added a tiny more water, mixed again, then kneaded when we got to the right amount of water, which was 1/3 plus 1/2 of 1/3).
  4. Pour some of the water into the dry ingredients and mix with a spoon. Keep adding water and work the dough until the color is uniform and feels like playdough.
 
If you want to make this gluten-free, you should be able to just use white rice flour instead.  You could add a little xanathan gum too, to make sure it's the right consistancy. 
 
 
The kids had a lot of fun!
 

(well, you can't tell from Conner's face here, but he really had fun too, I promise!)
 

 

 

Thursday, August 1, 2013

Madi's New Cymbals

Madi's dance teacher had a special surprise for Madi at her last class.... a new set of cymbals!  Madi has hand clickers we bought her so she can "click" when the other kiddos "tap" during class, but her teacher thought it would be fun to try cymbals, so she can also "slide", and bought her a pair.  Madi had a blast with them!!  Here is a little clip of her cymbals in action.  She made sure to tell me she "danced her heart out" :)
 
 
 

Join us for the 2013 Walk-and-Roll for Spina Bifida

It's that time of year again!  We are officially gearing up for the 2013 Spina Bifida Association of Arizona's Walk-and-Roll for Spina Bifida.  This is a really fun event that our family enjoys, and we are SO excited to get to walk with BOTH of our amazing little girls this year!  What a blessing! 

The Spina Bifida Association of Arizona was a great support when we found out Madi would be born with Spina Bifida.  They put us in touch with people that we could talk to who had little ones with spina bifida as well.  They also reached out to us when Madi was born and we were in the NICU. 

I feel like many organizations push awareness about the importance of taking folic acid for prevention, and then just kind of stop there.  As we all know, you can eat a super healthy diet, be on prenatals before you conveive your little one, and still have a child with spina bifida.  I know that was the case for us.  I had been on prenatals for years before conceiving Madi and never took any depression medication or other prescribed medication (some medications have been linked to spina bifida), ate a healthy diet, etc...  Madi was just meant to be the perfect, amazing little person that she is, and we are so thankful for her!

One thing that I appreciate about our local chapter is that they don't stop with prevention.  They have many, many activities to help enhance our kiddos lives.  They give away adaptive bicycles, have support groups, throw a yearly Christmas party, and have many other events and ways to connect throughout the year.  Sharri, from our local chapter, has even come to visit us in the hospital.  They really do care!

Please help us give back to our local chapter by donating and supporting our team... Team Double Trouble.  You can donate through our link, but we'd also love for you to join us for the actual walk.  This year the walk is Saturday, October 12th at Steel Indian Park. 

THANK YOU!

http://www.sbaazwalknroll.org/teamdoubletrouble