Food Allergies and Bed Wetting

I know, I know, this is SUCH an exciting topic I'm about to discuss ;).  Yes, you read that right.  Today, I'm going to blog about bed wetting... WOOT! 

(For those of you who follow our blog, you probably faintly remember a post about Conner's food allergies.  You can read it here for some background on Conner's allergies.)

About 3 months ago, I noticed something odd with Conner.  He had eaten something with a decent amount of dairy and wheat/gluten, and wet the bed that night.  Hmmmm......  I thought it was odd, but then thought maybe it was just a coincidence.  I mentioned it to David and he thought there was no way that food allergies and bed wetting could be connected, so I just brushed it off.

A while later, Conner got in to something again that had dairy and wheat, and again, he wet the bed!   I started thinking back about his bed wetting in the past.  I realized that since we have been gluten, dairy, wheat, and peanut free, Conner had zero nighttime accidents.... until he ate something with dairy and wheat.  I was staring to think there was a connection for sure, but still wasn't convinced.  A few weeks ago, David gave Conner real yogurt that had wheat and dairy in it (cake batter yogurt).  Sure enough, Conner we the bed.  Last night at our Church celebration, I had forgotten to get the kiddos dessert and felt bad, so I let them split an ice cream sandwich and that was a big mistake.  Conner wet the bed again.  Crazy, right????  Apparently not!  Even though Conner's "allergies" are more "sensitivities" that only showed up on IgG testing, not IgE, it still effected him.

I was curious as to WHY this could happen, and found some information about the link between allergies and bed wetting.  Apparently it has not been very well researched, because I'm having a hard time coming up with actual research reports.  I did find many links discussing the possibility, though.  Here are a few links.....

• Food allergies provoke bladder instability  
• Gluten sensitivity can trigger bladder problems
• Foods kids go for the most are ones they are most sensitive too, and these can cause night wetting
• Dairy and artificial colors may cause bed wetting
• Food allergies can cause a swollen, and therefore smaller, bladder
• Wheat, dairy, soy, corn, eggs, citrus, chocolate, peanuts, and cane sugar may cause bed wetting if a child has a sensitivity.

Since we began the diet, the ONLY time he wet the bed was when he had consumed foods he was highly sensitive to.  Before we started the diet, he was wetting fairly often.  It seems to go together for him.  It's pretty interesting!  I'm also wondering if David has some undiagnosed food sensitivities and would like him to get tested eventually.  I noticed that David gets up at least once a night to urinate (thankfully he doesn't wet the bed ;)), and it drives him nuts. 

Anyhow, if anyone out there has a kiddo that frequently wets the bed and no medical link has been found, it couldn't hurt to have them tested for food sensitivities to rule it out. 

Madi's first haircut

Last week Madi got her first haircut!  I know that this seems like no big deal to most of you, but to us, it is HUGE.  There was a time when Madi needed many shunts, and because of that, her hair was getting constantly shaved.  The neurosurgeon would bring me the hair he had shaved, in case I wanted to keep it for her baby book.  I did keep the first batch, but after that, all I wished for was for her to be able to get her first hair cut; not because her hair had been shaved off for surgery, but because she hadn't had surgery for so long, her hair actually was able to grow long enough to need a cut.  I finally got my wish!  Here's a few pictures from Madi's first hair cut.

I love the "floating head" pictures :)

Smiling from head to toe!  Conner will ONLY go to "his girl" Ashley (my hair lady), so that's where Madi went too.  She charges me less than those kids places do, so hey, I'm not complaining ;)

She had this excited look on her face most of the time!

Conner was a great helper and tried to keep her still.  It didn't work.  She was so excited she kept "jumping" up and down.

She even let Ashley blow dry her hair, which she NEVER lets me do!

Madi is so cute and kept asking me where her hair cut went.  Ha!  The new cut looks great on her!

Conner got his hair cut too.  He was saying he wanted to grow his hair down to his feet, but once we got there, he decided he wanted "spikeys".  For some reason, he wanted red spikeys, but Ashley didn't have any of that spray that washes out when you wash their hair, so he only got half of his wish.  He does love the new cut, though, and keeps asking me to make it in to a mohawk.

This picture is from when Ashely was in the process of cutting it.  It's pretty short now, but makes a cute little mohawk when he has me spike it.  As you can see, he really likes when Ashley cuts his hair :).

Sometimes Doctors Are Wrong

Placing one foot in front of the other, I've climbed to higher lengths. Reaching beyond my own limitations, to show my inner strength. No obstacle too hard, for this warrior to overcome. I'm just a man on a mission, to prove my disability hasn't won.

-- Robert M. Hensel

When you first find out your precious baby has spina bifida, your world is thrown upside down.  You search for answers, only to find that there really are no good answers, because all kids are so very different.  Looking back, most of us feel like we wish we had known then what we know now, because we would not have worried or shed tears.  We would have known everything would be ok.  The advice of well-intenioned doctors just seems to make it all worse.  Instead of hearing about all the things our children WILL do, we get the laundry list of what they won't.  And the funny thing is, most of the time, they do!  Our children shine!  Don't get me wrong, we love our doctors.  We covet their wisdom and advice, and we put our children's care, and lives, in their hands, but that does not mean that they are always right.  It does not mean that they can predict what our children will be like.  Unfortunately, some lives are ended early because of the picture that is painted of what their life "will" be. 

Here are some stories of how our children (and adults living with spina bifida) are redifining spina bifida every day.  Stories of children and adults showing the doctors who said they wouldn't, and the world who said they couldn't, all that they CAN do. 

I choose not to place "DIS", in my ability.

-- Robert M. Hensel

Our doctors said Alyssa wouldn't have bowel or bladder function. But my barely 2-year-old is currently potty training at the same level if not earlier than her "normal" friends. It's not TYPICAL for a child with Spina Bifida to have that function, but in her case, those particular nerves must have somehow been spared from damage.
Any time I hear "she can't" or "she won't", I remember the ending of the story, "Why a Bee?": The bee was the biggest problem of all, so the teacher sent her to see Doctor Owl for testing. Doctor Owl said the bee's wings were too small for flying and they were in the wrong place. The bee never saw Doctor Owl's report, so she just went ahead and flew anyway.

No doctor can tell you exactly what your child will be able to do, whether your child is born with a disability or not. Medical journals can spit out statistics, but they can't factor in a child's level of determination. Doctor Owl may be well educated, and he may have a lot of fancy initials behind his name, but he doesn't know my stubborn little bee.

The doctors said that I could never do gymnastics but here I am with my
medal!

Mikayla

When we received the spina bifida diagnosis, our world stopped. The first few things we heard out of the doctor's mouth was "Your son has spina bifida, he will have no quality of life. When would you like to abort." That statement still mortifies me!

Our son Tanner not only has an awesome quality of life, but he is happy living it! This kid never ceases to amaze us as his parents. When there is a will, there is a way. And Tanner always finds that way. :)

After Tanner was born we were told things like.... He won't ever crawl, stand, or take steps.... let alone walk. Tanner has been crawling for over a year now, is standing with assistance, and cruising along the furniture! He is also learning to use a mini walker.

Tanner is the light in our lives, and we would not change him for anything!



After we got the diagnosis I was sitting in my OBGYN's office waiting to be seen and she came in and asked me how I was. I told her "fine". And she looked at me and said, "No you're not. I read your chart and know the diagnosis you received." I told her that yes I am scared to death but we will make it. She said, "You may be fine now but just wait until she's born. Your life is going to be really hard then."

Really? When I look at this face I don't see "hard life". I see one of the most beautiful gifts a mother could ever receive. She is a blessing to this world. Not a burden. EVER!

The doctors told us our baby's life "wasn't viable" and that we should deliver early and let him die (i.e. terminate).Bryce is now 20 years old, plays a mean swing beat on the drums, has a superb jazz CD collection (of which he has memorized all the liner notes--need to know when a song was written? recorded? by whom? Just ask Bryce!), emails and Facebooks his friends constantly (also having memorized all their birthdays, all 284 of them), and is an artist at a studio for outside artists, selling his paintings for over $100 each. I'd say he's not just "viable" but thriving, blessing and enriching all who know him.



The doctors told us our nightmare was coming true.
But instead...we got the little boy of our dreams.

The doctors said he would be "incompatible with life."
But the truth is, our lives are incomprehensible without him.

My doctor told me that Nickolas would negatively impact my daughter's life and would be a burden on our family.
HA! I don't think so!

My parents were told I wouldn't live overnight, and the humane thing to do was to let me go. I'll be 28 in August. I think I'm a little past my expiration date!

The doctors told my parents I wouldn't go to mainstream school. I now have a degree and nearly have a diploma too.

At 19 weeks pregnant we found out we were expecting our second little boy- mister Logan Blake- but we weren't expecting to be told that they detected an open neural tube defect... Nearly weeks later and at almost 21 weeks- we received the official diagnosis of Logan's Spina Bifida and the detection of Hydrocephalus on his brain. God had to have blessed us with a good doctor that day because instead of being pushy and telling what our child would not do- instead he told us the possibilities of what our child might not be able to do and after we decided against termination he immediately sat us down and informed us of what would happen when he was born and if he would need a shunt...


Today- our Logan is 2 years, 8 months and thriving!! His smile is captivating, he has the best sense of humor, he is rolling all over the place, commando crawling, babbling up a storm, pushing up on his hands & knees, he spoon feeds himself & will sit up on his own for a few minutes... These are things that we didn't think he would ever be able to do or questioned when he would do and he continues to amaze us daily at whatever new thing he learns & we thank God for our miracle....



Doctors told me my baby would never walk, talk or "be normal" when he was diagnosied with Spina Bifida when I was 17 weeks pregant. Well they were WRONG... really, really WRONG! It might have taken over 3 years, but he talks non stop now and there is no mute button on him! It might have taken 4 1/2 years, but he walks just fine thank you very much. And who wants to be "normal" anyways? But I wonder what those same doctors would say to see that same little boy SURFING 10 years latter?? The little baby who I was told would never walk not only walks, but is a happy surfer dude who be 11 in the blink of an eye!

My parents were told (back in the day) I would basically "be a vegetable, mentally and physically." I'm a college grad, teach adjunct at a university, run my own business, and am married with three kids.

They said I'd never walk, but I can climb a ladder
Jaici 4 1/2 yrs old

As a 9th grader I was doing terribly in English in school. After a "D" for the 2nd grading period, my parents went to see the teacher to see what could be done to improve. Because of my CP, I am unable to manually write and was trained early to use an electric typewriter (I know, so old school). During the course of their meeting (my parents and said English teacher), my mother expressed the concern that unless my English grades improved I wouldn't be able to get into college. The English teacher was aghast, "College ! I gave him paper and pencil and he can't even write!" College indeed ! I have a BS and MS in Math and a PhDin Chemistry (although I'm not a chemist).

- Mike
(note- Mike lives with Cerebral Palsy, not Spina Bifida, but has an amazing story that needs to be shared!  This picture is of him graduating with his PhD when he was 53!  What an inspiration!)

The doctors told me that i would be paralyzed from the waist down...I am now doing zumba and love it.
- Isabel

Here is a pic of Caitlin crawlingup the stairs.  They said she would never crawl up the stairs.  She has just reached the top in this picture.

At our first Ultrasound, we were told Emmett had Spina Bifida, Hydro, and clubbed foot. The forecast was stormy, and the more we read, the more we listened the worse it sounded. We were asked on that day if we wanted to keep the Baby. Both of us had no doubts. A year after his birth we were told to just put him in a caster seat, get him used to using the wheels, because he would never walk. A year later, our boy started to pull himself to stand, then a year after that, he started walking along with the assistance of a small plastic chair. The Physio told us he didn't have enough strength to hold himself up, she said he would need to wobble forward using the walker and a stander. 6 months later, he showed all of them (8 Doctors were taking pictures on their camera phones), everything halted while he walked down the hall and back again using just a walker. Now here we are 4 years after their grim outlook, Emmett is using KAFO's, and a walker. He is so proud and tall. He keeps going further daily.....Our boy is a tenacious angel, and we couldn't be prouder!! :)

The Doctors said Jazmine will never move her legs, that she will have mental retardation,that she will for sure need a shunt for hydrocephalus and catheters to help her urinate.

Now Jazmine is 21 months super smart, walks on her walker and stands up holding up to anything she finds on her way, no shunt and no catheters and we see all her doctors only once a year for follow ups( neuro, ortho and urologist)

After receiving our diagnosis, we went through the MOMS eval, hoping to learn more about Spina Bifida as well as the fetal surgery. The neurosurgeon (whom we still go to and love) said, "Based on his L2 lesion, even with the fetal surgery he WILL need a shunt, and he WILL use a wheelchair by the time he's in high school." At the time it was the end of the world and I didn't stop crying the rest of the day. (By the way, he is turning 5 on Friday and does not have a shunt.) The next day I spoke with an ethicist, and I told him that I had talked with a SB nurse who told me that she has a few patients who RUN into clinic. He stopped me and said, "She should not have told you that. That is not true. Your son will never run."


Really?




  And a few others....


When I was in 6th grade my Orthopedist told me that I couldn't run, ( I was on the school basketball team at the time!).

-Liza

The doctors told my mom that I wouldn't live past the age of ten. I'm turning 26 in less than a month and I know have a college degree and a job. He also told my mother that my legs wouldn't grow. I was mostly legs till I hit my major growth spurt in my teens.  

You all hear a lot about my little Madi.  The doctors said she would never walk.  And she probably never will.... because I can't get her to slow down and stop jumping in her walker long enough to actually "walk", ha!! 

We, the one's who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as a handicap, but as a well intact human being.



-- Robert M. Hensel

If you want to share your child's story, I will happily add it :).  Just e-mail me your story and a photo or video at jamie_lugo@hotmail.com

Two Great Post I Want to Share!

Head on over to Misty's blog for a great post

http://www.mistyboyd.com/?p=141

then head to one written by Jill, Kingsley's mother

http://thelittlekingsley.blogspot.com/2011/06/awareness.html

for another great one!

An Amazon Shopping Spree for Madi!

Another big "thank you" to everyone who uses Madi's Amazon link to purchase your Amazon items, or for those of you who have passed it on.  It is such a tremendous blessing to have that money there to use when Madi needs "extra" things.  There were quite a few things Madi was needing, so I had a mini shopping spree ;).  Here's what we got:

1- A cute little backpack for her to carry all of her cathing supplies and underwear in when we are on the go (when are we not on the go????)

 2- Wetbags to carry in her backpack to put soiled "underwear" (training pants ;)) in...
3- Floaties so that Madi can have some independence in the pool (well, as independent as she can be with me right there with her ;)) and a little more stability...
 
 
And lastly, this is not from Amazon, but we got Madi some night-time trainers (big girl undees ;)) to wear at night.  We love love love her "underwear" that she uses now, but sometimes at night she leaks enough to soak the bed, which means lots of laundry (especially since she still sleeps in our bed and that means king-size sheets and a king-size mattress protector) so we needed something with PUL (basically a waterproof layer built-in) to stop the leaks.  During the day, her underwear from The Pampered Tush are AMAZING and are perfect, so we are all set there.  They fit her great, they are trim and cute, and the absorb more than we need.  If I could just convince Wendy from TPTush to add a layer of PUL to her undees, we would be set!  That might be my next venture ;).  For now, though, we got Madi these....
 
http://www.etsy.com/listing/74573966/overnight-4-pack-potty-training-older
 
I love that these help her feel like a 'big girl', are environmentally friendly, and are just plain super cute!  It's a bummer insurance doesn't cover things like this instead of disposables.  Even if we wanted to use disposables, which we don't, we couldn't because Madi gets wicked rashes after a few days in them.  Anyhow, I'll update everyone on how we like them and how well they work once they arrive.
 
 
 
 
Thank you again for helping us provide all these amazing "extras" that make our lives so much easier/better!

Many Good Men

A truly rich man is one whose children run into his arms when his hands are empty. ~Author Unknown

 
I am blessed with many amazing 'dads' in my life, and am so thankful for each one. 
 
I am thankful that my birth father, Mark, supported the choice to give me life.  I am thankful for the opportunities he gave me by choosing to place me for adoption.  I am thankful that he has opened his life to me now, so that I can get to know him. 
 

 
I am thankful that my father-in-law, Chuck, who taught David the value of hard work, raised him with strong values, and helped shape him in to the man he is today.  I am thankful that he loves my children and that he spends time to play with them and values them. 
 

 
I am thankful for my father, Jim, who showed us every day how much he loved my mother and how much he loved us.  He always worked hard to provide for us and made sure we always had everything we needed. , but he also gave us security, affection, his time, and his attention.  I am thankful for his tender heart and his integrity.  I am thankful that no matter what happens, he is always here for us.  He is always the first to visit us in the hospital, the first to lend a hand when we need it, and he never withholds his hugs, kisses, or affection.

 
Lastly, I am thankful for David.  He is an amazing husband and father. There are so many amazing things  Ilove about him about him and we are so lucky to have him in our lives.  He is generous, loving, kind, gentle, involved in our lives, helpful, supportive, hard-working, dedicated, determined, encouraging, faithful, and the list goes on and on.  He loves God and he loves his family.  Not a day goes by that he doesn't make this apparent to us.  He spoils us, but not with stuff (ok, sometimes with stuff ;)).  He spoils us with his love and with his time, and for that, I am forever grateful.  Every day, I thank God for bringing me David.  A good man is hard to come by, and I have the best!

And, of course, I am thankful for my amazing brothers (and brothers-in-laws) who are are great dads to my nieces and nephews, amazing uncles, and who always have time for us.

Tony

Jimmy

Mark

Matt

Happy Father's Day to all the amazing men our my lives!

Every Life Inspires

Project ELI is a documentary containing stories of families that have children with spina bifida designed for new parents who just received their baby's diagnosis.  Instead of being a medical look at spina bifida, it gives people the opportunity to "meet" families touched by this birth defect.  You can request copies of the videos by e-mailing jodie@teameli.com.  I am sending my copy to a local pregnancy center my friend runs (they just did an ultrasound on a mom and believe the baby may have spina bifida) and plan to order more to the specialist's office I had for our pregnancy.  Spread the word... every life is worthy, and every life inspires!


To watch the video, please go to...

http://youtu.be/FSKgPMv4QPQ