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Thursday, October 30, 2014

My Momma Never Said There Would Be Days Like This....

If you've wondered why I've been so quiet lately, it's because we've been really busy!  It seems that each day is filled multiple appointments and/or multiple therapies lately, not to mention homeschooling, homeschool co-op, neighborhood group, Church, and the rest of "life".   I'm looking forward to it calming down a bit within the next few weeks.  For now, we are just enjoying and cherishing moments of joy and togetherness amid the hustle and bustle.

As for medical updates, we have a lot!!  Adoption updates are slow.  I'm working on some paperwork and we're waiting for some approvals, and that's about it.  We go in for our Biometrics in a few weeks and then hopefully things will move a little faster.  I also hope to get a bunch of paperwork notarized at the bank next week, as well as at the doctor's office.  The paperwork isn't due yet, but I want to keep plugging away at it in hopes of having it done when the time comes so that it doesn't hold anything up.

And now for the medical "stuff"....


  • Ramya got fitted for her first wheelchair a few weeks back.  She has been using Madi's old chair, as she still fits in it, but the wheels have started crumbling.  We could buy new wheels, but she's finally growing and won't fit in it much longer anyhow, so the time has come to get her a new one.  She picked purple, of course, and is very excited!!  We should have it in about 2-3 months.
  • The 3 kiddos got eye exams a few weeks back.  Ramya's eyes are adjusting well to her new glasses and the strength.  We are starting a taping exercise to help re-train her muscles and hope that works well.  We are really hoping to avoid an eye surgery and are trying anything we can first.  Conner has a hard time converging his vision/eyes, but it's minor, so for now we are watching it and hoping he grows out of it.  Madi's eyes are just fine!  Conner and Madi were really hoping for glasses so they are a big disappointed that they do not need them.
  • Ramya has been undergoing a series of psychoeducational tests over a few days and weeks at the Melmed center to determine where she is at educationally and how we can best help her learn.  The test was pretty consistent with the testing done at the school district and what I'm seeing at home, however, it gave me more detail about how to help her learn.  Her lowest areas are working memory and fluid reasoning.  Her strength is quantitative reasoning.  She does best when she has visual cues and has a visual plan, so I am going to make a bunch of "social stories" in picture form for her (aka.... pictures of how we brush our teeth, how we get dressed, how we eat, our daily schedule, etc...).  I am also supposed to start working on environmental print so she can start identifying and learning sight words based on commonly used objects (chair, table, door, plate, etc....).  Other than that, I was told I'm basically doing what I should be doing when it comes to working with her.  I would like to find a tutor for her that can come to the house a day or two a week that is knowledgeable in working with kiddos with learning struggles that can also help me with strategies for helping her learn.  I know that the testing is skewed for her and that she will test lower just because of her language, so I'm not too focused on the numbers she got, but I do want to help her learn in ways that best work with her learning styles and abilities.  
  • Madi and Ramya had follow-up appointments with urology and both girls are doing well.  They go back in 6 months for renal ultrasounds and another visit.
  • Ramya was evaluated for speech therapy and qualified.  Her articulation is great, but they will help her with language processing and things like that.  She had her first session and enjoyed it!  We were able to find someone that does in-home therapy, so I'm happy about that.
  • Madi got her new HKFOs from Ron at Hanger and they fit her really well.  Ramya also got hers widened so they are fitting her much better now.   They are both happy girls!  And of course, we went to urban cookies afterwards for vegan gluten-free donuts, so that made them especially happy!
  • Cranial sacral therapy, occupational therapy, and physical therapy are all  going well and the girls are doing great!  
  • I think I finally got to the bottom of our appointment mess and how to coordinate the girl's appointments.  Basically, Madi is AHCCCS for her secondary insurance and she is supposed to go to CRS (children's rehabilitative services) to see her doctors.  Ramya is finally on AHCCCS but was never put in CRS.  Because of this, we were still having to make separate appointments out of different offices even though they see the same doctors.  Ramya should have also been put into CRS, but after many hours of calls, we found out they coded Ramya's disability differently than Madis, even though their primary "labels" are the same, so Ramya never got put on CRS.  We think it's all fixed now and an application has been submitted, so hopefully she will get in as well (she should) so we can start coordinating appointments better.  
  • Poor Madi got two spots we think are staph.  One is by her mouth and one is in her pull-up area just under and to the left of her vesicostomy.  We aren't sure how she got them, but considering she rolls on public bathroom floors with her wheelchair, I'm not too surprised.  I always wash her hands, but then she touches the dirty chair  wheels (she is always playing with the wheels though she actually uses the little railing for wheeling). I am going to start disinfecting the wheels when we leave the bathroom to help avoid this type of problem in the future.  Our naturopath prescribed an antibiotic cream for her, and I have her on colloidal silver as well.  It's just about all cleared up.  The tricky part has been keeping the area below her vesicostomy clean and dry, so she's been having lots of "naked time" to air out.  I use waterproof pads and prefolds under her on her little chair, then a rolled up prefold over her vesicostomy that I change often.  At night, I use a waterproof pad under her with moisture-wicking material on top and absorbency, then prefolds under her and on her vesicstomy, and I change them about every 2 hours.  I'm not sleeping much, but it's working and keeping her dry.  I also am doing insane amounts of laundry, but it's worth it, because the spot is almost gone.  I'm really hoping to avoid oral antibiotics unless we need them.  
  • Ramya's food panel finally came back (LONG STORY) and it's not showing allergic reactions to beef and pork, but it could be because we eliminated those foods after her last testing.  For now we are going to continue to avoid them and then slowly reintroduce and see what happens.  I'm praying her gut is finally healing and she will be able to eat beef and pork again, in addition to the many other foods she cannot have.  
  • David and I got tested for the MTHFR gene mutation and each have it to a degree.  That's a big post I will post later and talk more about, but it makes a lot of sense.  We are staring supplementation with methylated folate and methylated b vitamins for ourselves and the kiddos. 
I think that's all of the big updates from the last few weeks.  Don't forget to join us for the rock-and-roll for spina bifida on November 8th... go team Double Trouble!!

Tuesday, October 14, 2014

How Do You Define Someone with Spina Bifida?

 Handicapped?  Disabled?  Differently-abled?  Crippled?  Confined?

So many people seem to look at the diagnosis of someone whom has spina bifida and use it to define them.  They see the equipment and they cannot see past it.  They hear a child has spina bifida and they say things like, "I'm sorry".

My wish is that people could see that spina bifida does NOT define a person.  A wheelchair, leg braces, arm crutches, catheterizing, a shunt, and all those other extras do not define them; it only makes them stronger and more independent. 

So how DO you define a person with spina bifida?   This is how....




Strong, smart, sassy, hard-working, beautiful, dedicated, funny, creative, loving, artistic, loved, joyful, silly, playful, imaginative, problem-solver, courageous, cheerful, giving, magnetic personality, radiant, student, proud, daughter, friend, and sister

Beautiful, smart, funny, stubborn, helper, hard-working, attention-getter, fun, energetic, creative, lover of books, adopted, prayed-for, fighter, loved, loving, compassionate, caring, silly, sassy, playful, blessing, daughter and sister

Sweet, Sensitive, Shy, Big Brother, Protective over his little sisters, Video Gamer, Loves being outdoors, Loves fishing & swimming, Fun-Loving, Inquisitive, Always Smiling




Mother, wife, animal mom, daycare runner, friend, video gamer, world wanderer, photographer, music appreciator




Joy-filled, strong, determined, sweet, loving, stubborn but head strong, loves music, loves Mickey Mouse and Scout, loves bubbles and being outside, very opinionated and sensitive, loves water and baths, fun, full of smiles, laughs and giggles, has a mind of his own




Every inch of you is perfect. From the bottom to the top. She is fiery and strong willed nothing defines her and nothing holds her down
 
 
 
 
 
 
Friend, Daughter, Sister, Godmother/Auntie, Animal Lover, Nanny, Loyal, Caring, Trustworthy, Loving, Intelligent, Silly, Advocate, Oregonian, High School graduate, Caregiver, Registered Voter, Respectful, Reader, Writer, Amateur Photographer, Determined, Honest, Stubborn, Funny, Unique, Passionate, Strong, Empathetic, Inquisitive, Traveler, Music lover, TV Lover, Advice giver, Sentimental, Romantic, Thoughtful, & Adult with Spina Bifida.





-American of Irish ancestry
-Daughter
-Sister
-Auntie
-Friend
-Neighbor
-Voter
-Licensed driver
-Passport holder
-Traveler
-Frequent Flyer
-Music Lover
-Cat Owner
-Funny
-Loyal
-Kind
-Compassionate
-Witty
-Native Chicagoan
-Current Florida Resident
-Lover of seafood and wine
-Member of many families (biological, friends, SB community)
- Adult with spina bifida





Comfortable with myself, Determined , Intelligent , Outgoing , Well spoken, Loving, Caring , Strong-willed, Funny, Daughter, Sister, Friend, Blessed , Jacksonville native, Florida girl, Fashionable, Respectful, Important, Wise, Talented, Young, Traveler, College Student, High school graduate, Helper, Encourager , Singer , Songwriter, Gospel music lover, Christ Follower,  Adult Living Spina Bifida , Spina Bifida Advocate , Trendsetter, Happy , Loyal, Independent , Auntie,, Cousin, Registered voter, Optimistic , Faith filled, Friendly



Son, brother, grandson, cousin, nephew, wanted, loved, cherished, adored, ADORABLE, American, Ukrainian, all boy, fast, loud, intelligent, funny, resilient, overcomer, determined, courageous, brave, ABLE, loves music, fun


Japanese by nationality, Filipino/Irish/Middle Eastern by blood, American Citizen by default, Mommy, Grandma, Daughter , Sister, Auntie, Niece, Hard Worker, Traveler, Animal Lover , Creative , Singer, Writer, Great Cook , Goofy, Loving, Empathetic, Loyal, Tough, Friendly, Tenacious, Independent , Passionate, Connoisseur of Cheese (or Cheesy? lol), Resident Mischief Maker, Adult with Spina Bifida



(Lucas preferred not to share a photo on the internet but said...)

I'm a stubborn Irish-German American enthusiastic home chef desert rat Buddhist semi-intellectual over-educated librarian/bookworm/book snob proud American social liberal, so do as you please and don't tell me what to do or what to think, newly activist bife




A child of God, an older sister, a daughter, a friend, I am always willing to help others, caring, loving, gentle, calm, and strong.





Witty, smart , silly, stubborn , brave , happy , outgoing , LOUD, original, determined!





Educated, self-determined, independent, educated, activist, leader, compassionate, caring, giving, witty, visionary, nomad, ornery , explorer, advocate




 I'm a daughter, granddaughter, sister, niece,friend,Christian and volunteer




Son of Christ, charismatic, charming, lover of all sports, surfer, heart for people, strength beyond words, and a dose of Spina Bifida to make it all interesting daily





Mom, wife, friend, Christian, art lover, self-proclaimed comedian






Christian, wife, writer, comedian, lover of life, total goofball, dancer, happy




I am an adult with Spina Bifida, but it does not define me. Here are a few words, however that do: DETERMINED, CARING, HARDWORKING, AND TENACIOUS.




 Strong, wife, prickly pear, sarcastic fierce warrior and defender of the defenseless, writer, crocheter, painter, driven, passionate, intense





 Nine yr old, big brother, blonde haired blue eyed ladies man, train lover, Pittsburgh steelers fan, IPad obsessed, Mario Kart dominator, Pain in the butt, spelling guru, math challenged, momma's boy




Daughter, sister, friend, Christian, witty, educated, independent, empathetic, strong, go-getter, overcomer, extrovert, athletic, practical, methodical and honest





 Spina bifida.... one small part of an amazing whole!




Monday, October 13, 2014

Prayers for Evie

Please continue to pray for my friend Jaime and her daughter Evie (I previously posted their story here... http://www.aworthyjourney.com/2014/10/beautiful-evelyn-needs-our-prayers.html...) as they are discharged from the hospital tomorrow.  Evie still has a long road of recovery ahead of her.  They will stay in a nearby hotel until the last of Evie's follow-up appointments is complete, which is at the end of October.

Evie didn't pass her swallow study and is currently fed via an NG tube.  In addition to the hotel fees they will be facing (the hospital housing has no openings and the Ronald McDonald house is only for oncology patients), there are now more equipment rental fees since they are out of state and cannot get equipment and supplies from their normal supplier.  They can get reimbursed for equipment and supplies, but have to pay up front. 

I would LOVE to be able to bless their family with the amount they need for hotel.  If you $5 to spare today, please consider giving to help them with their medical costs.  Thank you!! 

 http://www.gofundme.com/fakzyk

Sunday, October 12, 2014

Madi talks to Siri... This is What Spina Bifida Looks Like

Most of the time, this is what spina bifida looks like for us... enough said!

 

Thursday, October 9, 2014

Madi Dancing in Her HKFOs using her Rifton Dynamic Stander... Spina Bifida Can't Slow Her Down!

Madi loves to dance and often puts on "performances" for us.  She's loving her new stander and wanted to try it forward facing.  That, of course, lead to a dance performance.  Today it was "Let it Go" from Frozen.  This girl is just too cute!!  When the doctors told me all the things she wouldn't do, they forgot to mention that none of it would matter because of how amazing she would be :).

 

Tuesday, October 7, 2014

Our Spina Bifida Awareness this Month



For those of you who are my facebook friends, you may have noticed I've been posting daily pictures to facebook of my gals who rock spina bifida.  You  may have looked at my photos and said to yourself, "Why is she posting these?  There is nothing special about these photos!". 

And you are right!  That is the point!

Yes, my girls have spina bifida, and yes, sometimes life requires some creativity, but the point of my pictures is that most of our days probably look so much like "normal" lives.  We play, we get dirty, we learn, we eat, we go on vacation, we have little adventures, we swim, we bike ride, and the list goes on and on.  Sure, we do those "other" things like therapy and cathing, appointments and surgeries, and sure, the girls do many activities while zooming instead of walking, but the point is that they still do them.

Sometimes I feel that others focus on what we do differently, when the fact is, much of what we do is the same

Here are a few "boring" photos of us from this past year, just living our lives, because spina bifida doesn't mean life stops for us.