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Thursday, July 24, 2014

Beating the Heat.... Our Summer Fun with Lava Lamps

This was a FAVORITE for the kiddos.  We've done it again, and again, and again, and... well, you get the idea!!  It's so easy and fun!

You can find the directions here... http://www.sciencefun.org/kidszone/experiments/lava-lamp/

The clearer the oil, the better you will see the reaction.

Here are some photos of our fun....






 

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

All you need is.....
 
 
 
 
And you can make snow!! 
 
 
You can even make it explode with vinegar... so fun!!
 
Just know it IS messy, and until it gets to "snow" consistency, well, it's going to get everywhere.  We went outside and the kids had a blast!  We've done it a few times now.  Here are a few pictures of the fun!
 


 

Tuesday, July 22, 2014

Spina Bifida and Quality of Life

Quality of life. 

That's something we, as humans, often feel the need to judge. 

When a baby is diagnosed in-utero, parents are too often told they will grow to have no quality of life.  Some parents are even told their child will be a vegetable.  Then comes the fact that their child *may* use a wheelchair, which of course, they make sound like the end of the world.  Oh, and let's not forget that you are told your marriage will likely end in divorce if you take on raising a child with special needs.  You are given a doom-and-gloom speech, then you are offered your "options".  

It's hard to hear the doctor speak these words.  Most of the time I hear new parents express that they are scared.  I read their posts, I reply to their e-mails, and I get it.  The truth is, when I found out Madi would be born with spina bifida, I was scared too.  If I knew then what I know now, I would have saved myself a lot of stress and tears, but I can't go back and change the past.  What I can do, though, is try to reach those parents feeling scared and reassure them that it will all be ok; that their child will be ok.

When I look at my girls I see light.  I see laughter and love.  I see pure joy.  They aren't faking their happiness, or trying to be something they aren't.  They aren't sad, they don't pitty themselves, and they don't let anything stand in their way.  They are smart, talented, creative, hard-working, funny, silly, loving, and the list goes on and on.  Spina bifida is part of them, but it doesn't define them. 

I started to wonder, though, how adults with spina bifida feel; how my girls will feel.  Do adults with spina bifida feel like they have a good quality of life, or do they feel that those doctors are right? Instead of making assumptions, I decided the best way to find out was to ask.  These are the responses I got.  They are unedited and were not filtered in any way.

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My name is Chris, I'm 47 and was born with Spina Bifida Myelomeningocele, L4-L5. My parents were told that I would not have a very good quality of life, and I proved them wrong every chance I got. I went to mainstreamed Elementary, Middle and High Schools, and graduated from each. I played on a youth soccer team with non-disabled people and our team won the championship. I then got a degree in Computer Science from a local college. And I also managed to break a Guinness World Record along the way. I've worked at a few jobs, I drive, I have a social life, and enjoy doing many different things. I would say that my quality of life is just fine.  

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 Amanda~ I'm not one to let life live me.




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I am Heather, 28 from Rochester MN. I was born with L4-L5 Myelomeningocele Spina Bifida and Hydrocephalus. I walk mostly, with a brace for support of my left ankle. I use a wheelchair, for long distances. I have had around 10 Spina Bifida related surgeries, plus a few extras for other things.

From elementary school, to high school, I was in regular PE and I was even on the swim team, in Middle School. I had Physical therapy, mostly in my childhood. I started adaptive PE in high school. I got my license and drove, just like anyone else did. I had my first job, at Burger King, at 15. Having other various jobs after that, including always babysitting on the side. I had boyfriends, most whom were able bodied. It seemed the disabled boys, were the ones who didn't work out the most! I went to college for Child Development. When I was 19, I found my now husband online, even though I wasn't even looking for a boyfriend at the time! I moved from Minnesota to Illinois, to live with him. From there, I ended up being a nanny and working for a local company, working door at concerts, on the weekends. We were married in 2006. In 2007, our daughter was born. She died at 4 months. We then had a son, in 2009. We moved back to Minnesota in 2012 and since then, I have been a stay at home mom, with photography on the side, for a job.

I guess what I am trying to say is, being disabled, doesn't have to stop you from living a normal life. Just because your body doesn't work like everyone elses, doesn't mean there's not a way to get things done! I think, your mind is the only thing that can hold you back.


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Misty-    My parents were told, like a lot of other brand new SB parents, that I would have no quality of life. They were told I'd never walk, talk, feed myself...I believe the term "vegetable" was used. I find it strange how much I don't actually feel like a potato. My feet don't work. I can't walk long distances. It's never been that big a deal to me. I've never had the use of my feet, and I don't know what I'd do with them if I did. I don't understand why having floppy feet automatically equates to a poor quality of life. If someone needs glasses, we don't have a pity party and cry about how awful it must be to need extra equipment to see, and we certainly don't come to the conclusion that their life must be SO AWFUL that we should "let them go" to end their suffering. I wear leg braces. They help me to have that "quality of life" thing I'm not supposed to have. It's not a big deal. I slap them on when I put my shoes on, the same as you do with your socks. I don't think the 45 seconds it takes to do that really dips into my quality of life. Who decides what "quality of life" is anyway? Quality of life is a choice. I could sit around all day and mope about the fact that I'll never be an NFL running back, or I can praise God for the things I can do! I choose the second one. God has been good to me. I don't have a reason to lay around feeling sorry for myself. I have a good husband, a good family, friends who will wait that extra 45 seconds so I can put my braces on. I get to tell other people what my quality of life will look like. No one gets to decide that for me. I choose to rejoice in what I have.


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Susan- When a person looks at the world, they are doing so through their own unique experience (perhaps one reason those without SB view us as having a poor quality of life.). As such, since I have never known what it is like NOT to have Spina Bifida, I don't have anything to compare it to. Comparisons though, in my opinion, are dangerous. Comparisons validate these stereotypes and pre-conceived notions and can lead to self-fulfilling prophecy if we're not careful. Yes, I have had more medical issues than someone without SB. I've had many surgeries. However, these moments have made me stronger, both physically and emotionally. I have defined my quality of life - not by the difficult times, not by what I don't have, not by what I can't do - but by the blessings I have been given.... blessings of family, friends, a job, talents and the ABILITY to make a REAL contribution and difference for others. These are the aspects of life that bring me joy and purpose. There is so much for us to learn from each other and we all deserve that opportunity to decide for ourselves what our definition is of "quality of life".



~~~~~~~~~
 Kristen-  Kristen did a research paper on spina bifida in highschool.  Though she has spina bifida, she found what she read quite terrifying and saddening.  She now works towards helping others view spina bifida in a more accurate and positive light, and empowers others to live independently.  She has a youtube channel she keeps updated with videos where she shows how she lives and thrives independently.  She hopes it will be a resource for other parents that don't know where to get their kids help and also for other adults with disabilities.   Her youtube channel is....

https://www.youtube.com/user/KristenMarieHart/featured?view_as=public

Kristen says....

 Despite the fact of being a fulltime wheelchair user I have still managed to live on my own, drive and recently graduated from cosmetology school! And that I make those videos to help and encourage others in chairs and their parents so they can teach their children.


~~~~~~~~~~

David- David does not have spina bifida, but also experiences judgement on his quality of life as he lives with Duchenne muscular distrophy.  He shares....

Nobody can make that decision for me, but me. I may be fully ventilator dependent, have a trach, depend on a food tube for nutrition, function like a quad and require 24hr supervision, but I absolutely love my life. I'm the smartest person in the family, can tell you how to fix or build almost anything. I've loved & have been loved by the best girl ever (my SB angel) and lost just as much. I'm a very passionate person, I advocate for Duchenne and SB communities where I can.

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Nicole-   Thirty-five years ago, I was born to a young couple who had no idea their baby was less than perfect. It wasn't until after I had come into the world that my parents were informed by doctors that their new baby girl had something called spina bifida. I was immediately rushed to another area hospital that could handle my immediate needs, which required multiple surgeries. Later, doctors informed my parents that because of my disability, I would be facing a short-lived life in which I would be a severely mentally and physically disabled , vegetable,  and would have no real quality of life. Because of this, they said, my parents should just allow them to medically starve me to death. They didn't. 
I've lived my life motivated to prove those doctors (whom I've never met) wrong. Not only did I graduate from high school, but I also received my bachelor's degree. I moved away from home to go to college, determined to figure out how to take care of myself. I learned to drive, with a convertible...because I didn't want the cliched "special van". I've gotten married, held down jobs, and bought a house. Not bad for someone with no quality of life. If only those doctors could see me now...      
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  I’m Lisa, I’m 38 and I live in Auckland, New Zealand.  I have Spina Bifida at Levels L4,L5 and S1. 
I am currently at university full time and have a part time job.  I’m studying a Bachelor of Arts in Psychology and Rehab.  I completed another degree when I finished school majoring in Human Resources.  I’ve been working full time since then.
I live independently and pretty much look after myself.  I am very independent and sometimes struggle to ask for help (even when I should)
I had an amputation below my right knee four years ago.   I originally wounded my foot and due to SB complications I ended up with a bone infection.  I eventually asked my ortho to amputate which was a great decision for me.  I am walking again and have to use a splint on my left leg.  I hate the splint, but I have to wear it if I want to walk.  I use a wheelchair for long distance as I get tired.  I don’t use any other mobility aids to walk.  I learnt to drive at 17 and absolutely loved it.  It gave me more independence.  I had to relearn to drive with hand controls after my amputation.  Took me a while to train my brain that the foot was no longer there to brake…haha!
I struggle more with the incontinence/bowel side of SB.  I have been trying for 2 years to get some help in this area.  I get very embarrassed when I have an ‘accident’.  This puts me off having a relationship as I feel insecure. 
I have amazing friends (both able bodied and disabled).  I am very lucky with the good friends I have.  
My family struggled with my amputation and I haven’t seen them since I had it done.  I think my mother in particular carries a lot of guilt which is unnecessary.  I don’t blame anyone.  It was just bad luck.
I love going to movies, concerts, trips away, dinners out, wine and cheese (lol)
For the most part, my life is pretty normal.  Yes I have some things I struggle with, we all do.  But I’m ok with it most of the time....  I’m just trying to be honest.  It’s not all bad, it’s not all great either.  Just like everybody’s life I guess

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Monica- It both saddens and angers me that parents are told the same thing mine were 49 years ago. I am an RN, a mom with two great kids, a grandma, a wife with a great hubby. My life is not perfect- but whose is? I am just like everyone else, playing the hand I was dealt the best I can. Just because you have medical challenges does not mean you have no quality.

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 Mary-  I feel incredibly blessed that my parents were so motivated from the beginning to ensure that I had every opportunity to reach my full potential, while maintaining as "normal" a childhood as possible. I am especially thankful that they found a medical team with the same philosophy of care. There was very little "sugar-coating" of information-I don't like surprises. I wanted to know what the adults were talking about. I wanted to learn all the "big words." I felt more involved in MY care because I was more informed. I became more involved>doctors talked more and more to me vs. my parents>I started feeling more confident, independent>improved quality of life. Spina Bifida is just one piece of me. I have a masters degree, work full time, own a condo, pay taxes and healthcare premiums(ok those 2 aren't so great); I am a sister, a niece, a daughter, a granddaughter, an aunt, a cousin, a neighbor, a friend. And guess what, no doctor could have predicted any of those, either! Quality of life is something unique to each individual~it's not found in a book. It is not a diagnosis~

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Sarah- I am 27, from Australia born with myelomeningocele. I also have a brother and sister born with myelomeningocele. A lot of people assume life with spina bifida is really tough and I suffer. While there certainly are hard times, I love my life and wouldn’t change it for the world. I do some things differently but it doesn’t mean I can’t do them at all. I study full time, have an amazing boyfriend, am learning to drive and one day hope to work in the disability field, advocating for those with physical disabilities. And hey, I’ve even skydived! I believe attitude plays a huge role in determining the quality of our lives and I chose to live happy.


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My name is Jane. I'm 21 and I have myelomeningocele spina bifida, L4-L5. My parents were told that I would never walk, talk, attend mainstream school, and one doctor went so far as to say I would be "a vegetable by age 5." None of these predictions came true! I can walk using crutches for short distances, but I do use a wheelchair or a scooter for long distances. Even if I couldn't walk, it wouldn't be the end of the world. My wheelchair and my scooter actually give me more independence! I can run errands, carry things on my own, play wheelchair basketball, and even dance. Doctors were also wrong about my ability to talk. Not only do I talk, but I have written and presented speeches for large audiences. I have participated in a speech competition. I'm a bit rusty now, but I used to be able to speak French pretty well. I love to write, and even have a blog about social justice issues. I can sing, too! In high school, I took voice lessons, piano lessons, and I was the lead singer of a jazz band. I was one of only 25 students to be chosen for the Honors concert, and was also chosen to appear in an ad for the school. I sing in the liturgical chorus at my college's Sunday morning Mass every week. Not only have I always attended mainstream schools, I have been in honors or accelerated programs since 5th grade! I graduated sixth in my class in high school, and I have made the Dean's list (which requires a GPA of 3.5 or higher) most of my semesters in college. I suppose doctors were just trying to prepare my parents for the worst case scenario. Life with spina bifida can definitely be a challenge. I have had health problems, some issues with chronic pain, depression, and anxiety, and I was bullied when I was younger, but I am blessed. I have a wonderful family and group of friends who support me during the hard times and celebrate with me during the good times. Of course I have days where I wish my circumstances were different and wonder what life would be like without spina bifida, but most of the time, I love my life exactly the way it is and wouldn't change a thing!





We Have Weight Gain!!!

I am singing from the mountaintops over here!

Ramya has officially gained weight and we are NOT headed to GI!  Yeah!! 

Today was her most recent weight check and she gained a little over 2 pounds!  The doctor came in and said (very excitedly), "What have you been giving her?!?!?!?  It worked!!!"  The answer to that is our new little concoction, given once a day in addition to her regular meals (she drinks water other than this drink during the day).  The doctor gave her pediasure, but it hurts her belly and I'm not super fond of the ingredients, so we make our own.  Here's what I put in it...

- 1/2 container of Lucerine protein refuel (She loves the taste, so this way she enjoys drinking it.  It's not organic, and not that great, but it does the trick!)....  150 calories, 2 grams of fat, 10 protein.

- 1 cup raw milk from local organically-raised grass-fed cows.... 160 calories, 8 grams of fat, 8 protein  (it also has TONS of nutrients to help build up her system)

- 4 tablespoons organic heavy whipping cream.... 200 calories, 20 grams of fat, no protein

That give her a grand total of 510 extra calories, 30 extra grams of fat, and 18 grams of protein.  The doctor was happy with this combination and the amount of calories and fat in it.  Since she doesn't eat much, this should help her reach the daily calories she should be consuming.  Hopefully this will keep her growing on her own little curve and help build her body up.  She enjoys drinking it, which is huge!

I honestly think that her last weight check was skewed and she really weighed more last time, but hey, she gained, and that's all that matters!!  She still takes between 1-2 hours every meal to eat, which can be stressful, but my focus really is on trying to get to the bottom of whatever is going on that is keeping her from liking food and enjoying eating.  I want her to be successful and enjoy eating, as I feel that will be the best for her in the long-run.  This buys us a little more time as we continue attachment therapy, and also start cranial-sacral therapy, and hopefully continue to heal.

I'm taking a big sigh of relief right now!  Come rejoice with me! 

 

Thursday, July 17, 2014

Our First Attachment Therapy Session, Cranial Sacral Therapy, and Ramya's Feeding Evalutation

This week we had our first attachment therapy evaluation, as well as Ramya's feeding evaluation. 

Our first attachment therapy session went well.  Ramya did her usual charming acts because there was someone new in the house.  She usually tries to charm strangers.  She had her over-the-top fake giggles, was overly-loud to get attention, and tried to wedge herself, physically, between the therapist and Madi to take attention off of Madi when the therapist was talking to her.  The therapist handled it all wonderfully, though, and I am sure she sees it often. 

She got to observe lunch time, which was nice.  Though Ramya mostly ate unprompted, which is unusual for a meal time, it did take her an hour to eat one chicken drumstick (which she really likes to eat), and she didn't want to eat anything else on her plate.  She was very squirmy and would try to ask lots of questions to divert attention to get out of eating, which is her typical eating behavior.  We talked a lot about how I handle situations and the kinds of verbiage I use.  She said that the words I use are good and to keep it up.  An example of this would be talking about food with Ramya.  I will say things like, "I know sometimes it feels hard to eat, but eating is very important.  Your body needs healthy food to grow and learn.  I love you very much and it's my job to make sure you are eating enough food to grow."  We do a lot of talking through things and she gets reminded often that my job, as her mom, is to keep her safe.  I tell her I love her very much and that I take my job very seriously.

She brought puppets and Ramya responded very well to them.  The puppets talked and asked questions, and Ramya interacted with them.  Based on her observations with the puppets, she said Ramya does not yet have object permanence, which is something I thought to be the case.  If I leave the room, she immediately comes looking for me or starts calling me, as she likes to have visual and auditory contact at all times.  She gets pretty upset at me if I ask to have privacy to use the bathroom.  She will maintain verbal contact me during times like that, but isn't happy until she has visual contact again.  Because I this, I assumed she hasn't yet developed object permanence.  This is another thing we talk through a lot.  I tell her mommy is always here for her, even when she can't see me.  If David and I are going on a date, we tell her that we will only be gone a short time and that we will always come back.  We play games like "peek-a-boo" and hide-and-seek to help her understand that not seeing us doesn't mean that we have disappeared. 

She recommended trying is not letting meal times go on indefinably, but instead, if she hasn't finished a meal in x amount of time (say 45 minutes or an hour), then she has to drink an extra protein shake to make up for the calorie difference.  We have a session planned again for next week and I am anxious to get some feedback about things we can be doing to increase our attachment and help with Ramya's emotions and meal times.  The plan is to continue in-home sessions for a while, and then switch to less-frequent sessions in the office.


This morning Ramya had her feeding therapy evaluation.  The therapist asked a lot of questions about Ramya's history and why we were in for an evaluation.  She then watched Ramya eat  some different foods.  I had brought in about 10 different kinds of foods, with varying textures; some that she loves, and some that aren't her favorites.  She basically said what we already suspected.  Ramya doesn't have any problems with chewing or swallowing.  Her mouth muscles work well, she's able to clear her mouth correctly, she can move food around correctly, and everything looks good.  She doesn't appear to have any sensory aversions to food either.  She thinks her eating issues stem from desire for control and lack of desire to eat.  She said her mouth may get tired after some time eating, but that's because she's choosing to take 1-2 hours eating per meal, instead of about the 20-30 minutes it should take.  She said she sees this behavior in kids sometimes, and it can be really hard, because there is just no desire to eat and no motivation, so nothing you offer will motivate them, which is what I am seeing at home.  She's going to send home some things we can do at home to further strengthen her mouth muscles and also recommended getting a chewy tube for her to chew on and build up the muscles, but that there is really nothing she can do therapy-wise to help her.  She did recommend getting a swallow study, just to make sure things are ok structurally, so I called the pediatrician and asked him to send in a referral to Phoenix Children's Hospital.  She also recommended heading back to GI if Ramya doesn't gain weight this time around, but shared my same concerns with our last GI doctor and recommended seeing something different.

This afternoon Madi had her second session of cranial sacral therapy.  It lasts for about 30 minutes and she loves it!!  Our OT, Danette, goes to this person for massages and the lady had told her she was looking to take on a few kiddos to help.  She's been able to help kids avoid rodding surgeries and other things like that in the past.  She was excited to get to work with Madi and help her with her tight heel chord, hip out of place, and scoliosis.  Madi does feel more level and looser once we leave.  I'm excited to see her body change while we work with her.  She usually works with a child weekly for a year.  I also talked with her about Ramya today and she is going to start working with her as well.  It hadn't dawned on me that she might be able to help, as Ramya is actually overly-loose and not tight, but she thinks she may be able to help Ramya too.  I'm excited to have her working with both girls!!


That's all the updates I have for now.  Tomorrow is a down-day for us, and I can't wait!  Have a blessed weekend!

Wednesday, July 16, 2014

The Kids Singing "Let it Go" from Frozen

The kiddos wanted to make a video of them singing "Let it Go" from the Frozen movie.  I think it perfectly sums up their personalities.  You have Conner, the adorable goofball who loves to have fun and be in the spotlight.  Next is Madi, my animated child who really gets in to everything she does and is quite passionate.  And lastly is Ramya, my fun-loving squirrel who is constantly on the move and  who has a personality that shines.  I sure love these kiddos; we have a lot of fun together!

 
 

Monday, July 14, 2014

Popping Wheelies Stickers

Tami, Madi and Ramya's physical therapist, brought us these cute stickers and I've been meaning to post about them.  I wish I had seen these when I was talking to Madi's class about spina bifida.  I would have loved to pass them out to the kiddos!  You can customize what you get so that they incorporate any adaptive equipment your kiddo uses.  Just thought I'd share!