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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's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Saturday, August 23, 2014

Team Double Trouble is at it Again..... Join Us for The Walk-and-Roll for Spina Bifida with the Arizona Spina Bifida Association


Every year the Spina Bifida Association of Arizona hosts a Walk-and-Roll for spina bifida; it's one of their biggest fundraisers of the year!  The association has always been a big support for us, and we want to say "thank you" by helping them raise the funds they need to be able to support families all across Arizona.

How can you help?

You can sign up to walk with our team, collect donations yourself, and/or donate towards our team if you are unable to join us at the walk.

When and where is the walk?

This year the walk will take place on Saturday, November 8th at 10 am.  Registration begins at 9 am.  It will be held at Steel Indian Park.

How do I sign up?

Please go to our team page at http://www.sbaazwalknroll.org/faf/r.asp?t=12&i=1113415&g=6077790&faf=1&e=7886519356 to join or team or donate on our behalf.


THANK YOU!!  We hope to see you there!

Thursday, August 21, 2014

Our Appointment at the Melmed Center and Our New Eating Strategy

Today I took Ramya for her appointment at the Melmed Center.  We made an appointment at the recommendation of the school district when Ramya underwent her testing there.  My goal was to gain practical strategies for helping her learn, since we homeschool and I take my job pretty seriously ;). 

The developmental pediatrician we saw was a really nice doctor who was born in Pakistan but had extensive knowledge about adoption, orphanages in India, and common practices in India.  I was so glad!  She spent about an hour and a half with us talking about everything Ramya.... behaviors, attachment, history, learning, eating, and anything else we could think of.

We just started a new eating strategy with Ramya that I devised (I'll post more about that below) and I got a chance to talk to the doctor about it.  She said she thought it was perfect and she was really glad to see I was already doing what she would have recommended.  Yeah!  Since attachment issues and eating issues are all new to me, I feel like I'm flying by the seat of my pants sometimes.  I read a ton of books but the practical day-to-day implementation and hands-on practice of what I read just feels totally new to me.  It was very reassuring to hear that we were doing ok!  She liked our approach to the milk as a daily "extra" for weight gain and didn't think there was anything to add there.  I talked to her about our GI visits and my concerns there and she totally agreed with me that GI is not a good fit for us, as they do not really understand Ramya and her unique background.  Whew!

We discussed Ramya's learning needs and the doctor recommended that we get a psychoeducational evaluation.  The test is not covered by insurance and is very expensive, but I feel it is important and want to go ahead and get it.   The test will give us the specifics of the areas she does well in, the areas she is low in, what ways she learns best, how she processes information, etc...  It's 2 days of testing, at 2 hours per day, then a day to go over the results.  They will give me practical strategies and approaches for teaching her and helping her learn.  Though I cannot say I am looking forward to it, I know that the information we get from the testing will help me to know how to teach her and how to best help her learn and is really important for me to know. 

Another topic we discussed is Ramya's behaviors (things like lying, being controlling, attention-seeking behaviors, eating issues, jealousy, tantrums, etc...) and she felt like they are totally normal for a child with her background, which I totally agree with.  I basically told her it's all stuff we anticipated and nothing I thought was out of the norm.  I told her our strategies at home and she said that we were doing what she would recommend and just to keep it up and be consistent.  She is hopeful, based on what she saw in our interactions, that the behaviors will taper off after about 3-4 years of being home with us.  She said right now she is still trying to figure out if this is forever, and what exactly forever means, which I agree with.  I still feel that she is trying to figure out "family" and her role as "daughter" and "sister". 

The doctor recommended getting a hearing a vision test, but not through the district, which is what we did in the past.  I already had the vision test scheduled with Dr. Glonek next Tuesday so I will schedule the hearing tomorrow so they are both on the calendar.  Other than that, there's not much she recommends.  She said she could diagnose her with ADHD if we wanted, but that she recommended waiting to see if she has attention issues or if it is processing issues that are exhibiting as attention issues.  I told her a diagnosis wouldn't change anything anyhow, and that I wouldn't want medication anyway, and that I'd rather not diagnose her at this time, and she was fine with that.   We will see her again in 4 months to talk about the testing results and see if there is anything further she recommends. 




So back to the eating...




I have been thinking  (and praying) long and hard about our eating struggles.  Ramya has been spiraling since my hospital stay with Madi and things had gotten even worse in so many areas, especially eating.  The control over food and attention-seeking behaviors with food were over-the-top.  I just came to the point where I wanted to break down in tears because every meal was so terrible.  Hours and hours and hours every day.  It was hard to just sit down and have fun after meals because I was so tense and the rest of the day was so rushed.  I smiled, we played, the kids had fun, but felt it was fake and really wasn't feeling happy, that's for sure.  I was just trying to fake it until I could make it real, if that makes sense.  With homeschooling, therapy, and appointments, life can be busy anyway, but add in hours of eating every day and it was terrible.  I knew that something had to give for not just mine and David's sanity, but hers as well.  It's so hard with her because positive feedback or negative feedback for food get us in the same spot... it gives her power over us and power with her food, which leads to control over food and refusal to eat when she feels she needs control.  I decided the best thing we could do is stop giving any attention to food, positive of negative, so it loses it's power.

When meal time comes, we pick out what goes on the plate together and I make sure she has what she needs on the plate (meaning something with protein and healthy fats, fruits or veggies, a grain, etc...).    I set a timer for 30 minutes and I sit by her.  We talk about our day, what we will be doing, funny things that happened, anything and everything, other than food.  I do not ask her to take bites.  I do not tell her good job.  I do not remind her that her body needs food to grow.  I do not give her any feedback on how she is doing.  She doesn't like the lack of attention with food, so when she tells me something like "look mom, I took a bite", I just tell her, "Remember that mommy is not worried about food, so you don't have to tell me, it's ok.", or something to that extent.  When the timer gets to 25 minutes, it automatically gives a warning and turns yellow (it glows green up until 25 minutes).  Then, when time is up, it gives another warning and turns red.  This way the timer is giving the reminders and she is managing food herself, instead of it coming from me (or David, since we are both using this strategy).  At the end, eating time is over and I put the food away.  Of course I still need to make sure she is getting enough calories, so if she hasn't eaten enough, I give her some extra of her high-fat and high-protein milk so that she is still getting what she needs, but without any positive or negative pressure with food.

We have only been using this strategy since the start of the week, and of course I do expect some testing of boundaries with it, but my hope is that staying consistent will mean no more food battles and more quality time together.  I really believe that we need to get to the root of the food issues and try and heal what is causing them.  Hopefully having less time on eating will mean more quality time together to just enjoy each other and work on attaching and bonding.  So far it is working well and she is eating the same amount of food as she ate before, but it takes 30 minutes instead of 1 1/2-2 hours.  Because she would wait for either positive or negative feedback to take a bite (or hold it in her mouth if we weren't looking, because she knew she wouldn't get feedback if we weren't looking), eating took forever.  And when she wanted attention (so constantly ;)) she would not eat to get that attention.  But without that part, eating takes so much less time.  That, of course, leaves us more time for playing, dancing, rocking, homeschooling and just being, which is what we needed.  I am seeing her strong need for control change shape now, which isn't great as it's targeted towards Madi and Conner quite often, but we will get there slowly but surely.  I try to give her lots of appropriate choices throughout the day so that she has some control.  Though it doesn't solve the problem, it does help, and I know it will all just take time.  I also try to give her lots of appropriate attention in other areas which helps.  Ramya is such a sweet and fun girl, so enjoying time with her is easy!

So that is that for now.  I have some big announcements to make, but it's almost 1 a.m. so those will just have to wait.  Please continue to pray for our family as we continue to grow as a family of five.  Even though it has been almost a year and a half since we officially became a family of five this process of learning, growing, and healing will be ongoing for years for all of us.  Please pray for wisdom and guidance as we go continue on this journey together, as well as for lots of peace, healing, and joy.  Thank you!




 

Saturday, August 16, 2014

Our New Whole Foods Supplement... Juice Plus+

I'm always on the lookout for high-quality supplements for my kiddos.  I have tried so many different things but I either have a hard time getting them to take them, or they will take them but the nutrients fall short.  Of course I would love if they would just eat the diet I know they need and didn't need any supplements, but well, we are still working on that one.  Then you add in that our produce now days, even when it is organic, falls very short on nutrients, and it becomes even harder to get your kiddos what they need.

After watching Fat, Sick, and Nearly Dead, as well as Food Inc. and Food Matters on Netflix, I have been even more fired up about trying to build up our bodies with micronutrients and nutrient-dense foods.  We eat almost completely organic, buy local grass-fed beef and organic free-range chicken, eat only wild-caught fish, eat organic produce, limit sugars, starches, and refined carbs, and we don't eat many processed foods.  Because I can't get my kiddos to eat many vegetables and Madi won't eat fruits or veggies unless I chop them very, very tiny and hide them in her spaghetti, I always felt my kids were not getting what they needed.   I love juicing, and think that's a great way to get micronutrients, but I honestly hate cleaning the juicer, and don't don't juice as much as I should.  Even when I do, Madi and Ramya won't drink it, so that doesn't help them.

On the spina bifida groups I'm on people kept talking about Juice Plus and how it's helped them to keep UTIs away, stay out of the doctor's office, to be infection-free, etc....  The girls do great with not getting UTIs (thanks to cranberry extract and d-mannose), but I always worry about keeping Madi's immune system up so she doesn't come down with something and have a seizure.  I also try so hard to build up Ramya's  system since I am sure she is so depleted from years of inadequate nutrition.  Conner does pretty well and doesn't get sick often, but he's not a veggie eater for sure.  Poor David gets sick every time anyone around us does, and he always has a hard time kicking it.  I know he could use an immune system boost.  I almost never get sick, but with 3 kiddos, and 2 of those kiddos having disabilities, well, I just don't have time to be sick at all!   I decided to try it for our family and so far we are loving it!  Even Madi, who gags fruits and veggies and won't eat many different textures, will eat them and likes them.  They have a child's study they are conducting and if you participate, and purchase an adult juice plus, your child gets Juice Plus for free (you have to purchase an adult juice plus set, but then one child per adult gets their juice plus covered.  David and I each get the supplements so two kiddos get their supplements free and then we pay for the third child's supplements.  David LOVES that they have chewables for adults and talks about how much he loves them :)).

Just to be clear, I do NOT think Juice Plus should be a substitute for high-quality fruits and vegetables, and I'll keep chopping those veggies and hiding them, but it is a great supplement to help you get to where you should be.  David and I eat a lot of vegetables, but I think it's important for us too, as it helps fill in the gaps. 

If you would like to read the clinical research on Juice Plus you can go to....

http://jveprek.juiceplus.com/content/JuicePlus/en/clinical-research/juice-plus-clinical-research.html#.U_A-1s90ztQ

Here is a video about how Juice Plus is made...

https://www.youtube.com/watch?index=3&list=PLC3386EAEA57BA722&v=jzWHTGc9Wmc&app=desktop

And a great summary from Dr. Sears, whom I love...

http://www.askdrsears.com/topics/health-concerns/childhood-illnesses/benefits-of-juice-plus


I signed up to sell Juice Plus because I wanted to earn the money back on our own purchases (you do not get a discount if you sign up, but it's $50 a year and we earned that $50 back on our first purchase by signing up to sell it) so that I can use that money back towards our future purchase.  I can see our family using it long-term.  If you would like to try juice plus, please let me know!  Here's a link to our Juice Plus store...

http://jveprek.juiceplus.com       

I'll keep you updated at how we are liking it.  Please let me know if you have any questions :).


http://jveprek.juiceplus.com       





 

Sunday, August 10, 2014

Green Kid's Craft Back to School Sale

We are really enjoying our Green Kid's Craft monthly craft box.  I thought I would share their upcoming back-to-school coupon code.  If you click on the link below if/when you purchase, we will get credit towards a free box :)....
 
 
BACK TO SCHOOL SALE -- $10 OFF ANY SUBSCRIPTION - AUG 10 - AUG 31 Green Kid Crafts is a monthly Creativity and STEM Science Box subscription service that provides all the hands-on materials needed to inspire creative and educational fun. Plus, they also offer tons of single boxes with themes like Kitchen Science, Ocean, Mad Scientist, Nocturnal Animals, Green Energy, and much more. We don't see many coupons for the longer-term subscriptions, so this is a great chance to get a deal on those! Use code “BACK2SCHOOL10" to save $10 off any subscription, plus receive bonus welcome materials and activities. All new subscriptions ship for FREE! New subscribers only. Offer expires 8.31.14.
Visit here to start shopping! 




http://www.shareasale.com/r.cfm?u=962045&m=40843&b=387394


 

 

Saturday, August 9, 2014

Seizures Are No Fun!

Wednesday went a little different than we had planned.

We had friends over and we were making fermented pickles (http://www.myhumblekitchen.com/2013/07/a-simple-recipe-for-homemade-natural-fermented-pickles/).  The kiddos were having a blast playing together.  They played inside quite a while but then went outside to play. 

After our friends left I went outside to bring Madi in.  She wanted to tell me all about a grasshopper she had seen so we chatted a while.  Then she looked at me and threw up.  I thought she may be over-heated, so I took her inside to cool off.  I grabbed her seizure medication, just to be on the safe side, and headed to my room to rock her under the fan.  She was being her normal spunky self and was yelling at me telling me she didn't need her medicine.  While I was rocking her she fell asleep.  She woke up about 15-20 minutes later when Conner came in the room chatting, but threw up again.  After that she proceeded to do her repeated dry-heaving that usually indicates the start of a seizure.  I gave her one of her seizure rescue tabs to try and stop it ASAP.  She was still talkative, though she was becoming a little slower to respond.  She was NOT happy with me for giving her the medicine.  I am sure they taste terrible.  I watched her for a few minutes but the seizure was continuing to develop (she started staring off, not responding much, and her left leg had started rhythmically jerking).  I gave her a second rescue med and watched her again.  The second tab didn't stop the seizure either, and then her right arm started jerking rhythmically.  Our neurologist wants me calling 911 while giving the 3rd rescue med tab so that she can be evaluated by the paramedics and then be brought in to Phoenix Children's Hospital if needed so I called 911 while giving the 3rd tab.  When the fire department got to our house it was like she was trying to talk to me but couldn't, and she kept trying to reach out so I held her hand.  It was hard to see her like that.  They put oxygen on her and she finally fell asleep.  They were able to get an IV in her foot, which is always so nice.  I was so thankful!!  I handed her to David so I could change my shirt (I had lots of throw up on me), and then I grabbed my hospital bag and we headed out to the ambulance.  Madi slept the entire ambulance ride, and continued to sleep about another hour-and-a-half once we got to the hospital.  She woke up for about 30 minutes for testing, then went right back to sleep for almost another 2 hours.  It was a good thing she got to nap because we didn't get in to a room until almost midnight! 

The first thing we did at Phoenix Children's Hospital was check her shunt with an MRI and x-ray series, but everything looked good.  They thought there may have been a very, very, very slight increase in her ventricle size, but they said it was hard to tell because the MRIs cut through in different places.  They weren't worried but wanted to watch us overnight.  The ER doctor did note she had moderate stool back-up.  They said it could have been putting pressure on her shunt, which may be causing a slight increase in fluid.  The neurosurgeon (ours wasn't on call so we saw someone else) didn't seem to think that was the cause, though, as there wasn't too much build-up.  I am cleaning her out just in case, though.

The ER doctor thought that her electrolytes might have been imbalanced since she had been outside, but her levels came back fine.  Her Keppra level was pretty low, which they thought may be from throwing up.  They decided to give her some IV keppra to make sure she kept it down and got her levels up.  They also increased her dosage from 6 mg 2 x a day to 6.5 mg 2 x a day.   

We went home Thursday after Dr. Shafron, our neurosurgeon, got to see Madi.  He didn't want us to go home before he got to evaluate Madi himself.  Though it was hard waiting until his clinic day was over, I do really appreciate that he cares about Madi and wanted to take the time to evaluate her himself.

Thursday  night we relaxed and went to bed early.  We both appreciated the good night's sleep!  Madi is now back to her normal fun and spunky self, and I am so thankful!  I'm praying this change in dosage, as well as the extra keppra she got, will keep her seizures away.  I'm a little freaked out because she has only had one other day-time seizure.  The majority of her seizures are when she is coming in or out of sleep.  It was almost reassuring having them at night or early morning, because I am always there during those times, so I never worried about seizures happening for other people (like on one of our occasional date nights or at Church).  The fact that it happened in the middle of the day has me worried.  Please pray that this trend does not continue!

Thanks for those of you who were praying for my sweet girl and who texted to check in on her.  We really appreciate it!


 

Sunday, July 27, 2014

Beating the Heat... Our Summer Fun With Ceramics at Home

I was taking the kids (squirrels??) to the grocery store the other day and the Ceramics At Home store I have always wondered about caught my eye.  I decided to take the kids in there and see what it was all about.  Basically you pay for your ceramic pieces (which are really not too expensive considering) and can paint them there for no additional cost or they will send paint home and you can paint them at home for no additional cost.  You also pay a firing fee on top of the ceramic fee, though.  If you like them on facebook, they post lots of specials, and they also publish a calendar with daily specials. 

The kids each picked a ceramics piece and wanted to paint it at the store.  They really took their time and enjoyed painting.  They were a little bummed they had to wait a few days to get their pieces once they were painted, but waiting is just one of those fun things you have to learn in life.  They were VERY excited to pick them up, and they were ready in just 2 days!  We will definitely do it again!





 
The girls needed some help but Conner did his by himself.  They all 3 had a blast!
 
 
 

Beating the Heat... Our Summer Fun With Making Vases

When I was teaching I would help my kiddos make vases or candle holders using little glass containers, colored tissue paper, and modge podge.  It was so easy and fun!!  I decided it would be fun to do with the kiddos as well, and they really enjoyed it!  We slightly watered down the modge podge to make it easier to spread, and you have to make sure to get modge podge both under and on top of the tissue paper, but you also have to be careful not use too much or the tissue paper will tear.

After we were finished I took the kids to the store to pick out flowers for their vases.  They really loved cutting the stems and arranging their flowers in their vases.  Conner decided to put his vase in his room on his desk, Ramya decided to put hers in the girl's bathroom, and Madi decided to put hers in her room on her nightstand.  It really brightened up their rooms!





 
Madi's....
 
 
Conner's....

 
Ramya's....