Neuro, Uro, and Thankful for a Crappy Day

Whew, what a week!

I know I say that often, but it just seems to describe this week so well.

Tuesday we had an appointment with our neurosurgeon, Dr. Shafron, as a follow up from Madi's last seizure.  The ER had mentioned Madi's right ventricles were slightly larger.  I told them that she is shunted on the left so they always are, but they wanted me to follow up with neuro and just make sure there were no changes.  Dr. Shafron compared the images from the ER to her last images and her ventricle size looked identical.  Yeah for a well-functioning shunt!  I remember when she was tiny and she was flying through shunts.  I felt like that would be our life forever.  It's now been over 6 years with this same shunt!  6 years!!!!!

Thursday the girls had appointments for renal ultrasounds and a follow-up with our urologist, Dr. Zuniga.  They had a really hard time finding Madi's left kidney, and they aren't exactly sure they even found it.  Madi has a super kidney (her right one) that performs as well as 2 kidneys.  Her left kidney doesn't really work at all, though.  They think it may be shrinking/shriveling, which they said is typical.  Her right kidney continues to look great, though, so we are thankful for that.  Her bladder is also looking good.  Ramya's tests all came back great as well, so that was good news!  We eventually need to consider surgery for the girls to help with urinary and bowel things, but I told the doctor I would prefer to wait until after our adoption goes through and we re-settle as a family since both girls are doing well (they just can't get out of diapers/pull-ups at this point, which I know eventually they will want to do).  He agreed that was a good plan, so for now we wait.  He also answered a few "boy" questions I had about Conner and put my mind at ease, which was very much appreciated.

Now on to our crappy day that I am actually quite thankful for....

Today we had homeschool co-op and we had a blast like always.  Conner takes Mini-Mozart, which is an acting type class for kids.  He also takes What's Bugging You, which is a class that teaches them about, well, you guessed it, bugs.  He really loves both!  I teach the class the girls are in and usually pick a topic to learn about and then we have activity centers to work through related to the topic.  We also have music and PE class during that time.  We learned about polar animals and did a lot of fun activities.  The girls really enjoyed it.  After we left and got to the car is when the fun started.  Sweet Madi unlocked her wheels (she's very independent and knows how to lock and unlock them and usually uses them appropriately), unstrapped herself, and reached over to grab something.  That's when her wheelchair went flying backwards in to the parking lot and she went flying forwards, belly first, on to the asphalt.  She was scared but somehow was completely unscathed.  Not even a scratch!  There were many tears shed, but she told me she was crying because she was scared, not because she was hurt.  Thank God!  I'm so glad she wasn't hurt.  We talked about why we need to make a different choice next time and I know she learned a good lesson.

Next we had an appointment with our naturopathic doctor for a blood draw so we started to head that way.  Before I get to that part, though, here's a little back-story.....

Unfortunately this blood draw had been a really frustrating situation for all of us.  A few weeks ago the neurologist asked me to get a draw for her to check her keppra levels.  Since we had to do the draw anyhow and she wasn't due for any other labs, we decided to check anything we could and he also included folate levels, b 12, amino acids, thyroid, homocystine, and a few more.  I made an appointment at our pediatrician's office since they do draws all the time and I figured they would be the best with kids.  They did a great job on the draw and got her on the first try and were done quickly.  Unfortunately, though, somehow when they were transferring the neurologist's orders over to their paperwork, they left off the most important test... her keppra levels.  When I got the call that her results were ready I sent David by to get them.  When he got home I realized that the level was missing but the office was already closed and I couldn't call.  I called first thing Monday and after many conversations with our neurologist's nurse, Sonora Quest Labs, and our pediatrician's office, we realized what the error was but it was too late to do another test from that sample.  I had the neurologist write up another test form for us, including white blood cell count this time as well, and made an appointment with our naturopathic doctor this time for the draw so that I could also get a food allergy panel run at the same time.  I had tried to have it run with the first round of blood tests, but because it was an outside lab they wouldn't do it for me.  I figured we would at least get to kill two birds with one stone.  Now back to my previous story...

On the way to our naturopathic doctor's office we were all getting hungry and decided to stop at Whole Foods for lunch.  It was raining, though, and the traffic wasn't great.  As I was exiting the ramp I almost got rear-ended.  Almost.  I am so, so thankful for that almost in there.  God really protected us!  While we were shopping for our lunch I got a call that our new physical therapist (such a long story there but Tami, our amazing PT, was no longer contracted with our insurance so we had to switch.  We found Kelly after a few months of self-pay appointments with Tami and lots of phone calls.  We've had her a few months and really loved her) was no longer with the company and they had no other therapists for us at this time.  GAH!  It took me so long to find her and she was great with the girls.  We are so so bummed to be losing her, especially so soon.  I texted her to see if we can follow her to her next office but she's not sure at this time where she's headed.  Here's the good news, though.  The last few times Tami had worked with the girls she decided to bill our secondary, fully expecting them to deny her, since she was no longer contracted with them.  Instead, they paid!  We aren't sure if this will last, but for now, we can continue to work with Tami until we find another PT.  Even though we are bummed it's amazing how God has worked out all the details.  I also ran in to two friends at Whole Foods, so that helped soften the blow.  A hug from a friend just goes a long way!

After we got our lunch we headed to the office.  Dr. Vitaro was great with Madi, but unfortunately he couldn't get a draw on the first try and there was just no way she was letting him try again. She was pretty upset.  There were more tears shed.  The doctor felt really bad, and I felt bad that he felt bad.  I had just got done telling him how I was really frustrated at the other office for messing up her labs, but new it was a mistake and was trying not to be upset, and then he couldn't get a draw from her.  It was just a bummer.  I decided to just forget the allergy test for now and make an appointment to go back to the pediatrician's office for the draw since she can be a hard poke and they can get her on the first try.  That appointment is Monday, so I am praying like mad that Madi will do ok during the draw.  She was upset during the last one , which she also thought would be the last one, and I really pray she doesn't have anxiety about the appointment and that it goes smoothly.  Hey, third time's the charm, right??? 

On the way home Ramya apparently still had some gluten-free pizza crust left (that girl can really hold on to food forever!!) and gave it to Madi.  We were on the freeway and I heard her start to choke.  She cleared it quickly (thank God) but she started making her "I'm going to puke" face that she gets any time she gags.  I pulled off the road quickly to give her water and help her but she was fine thankfully.  Again, I am SO thankful for protection for her.  I know I sound like a broken record, but really, I am! 

Whew!!  Once we got home the rest of the evening went well.  We went out to dinner with David's grandparents to celebrate his grandfather's birthday and enjoyed spending time with them.  After the kiddos went to bed David and I finished watching a movie together and it was nice to just relax.  I'm thankful that tomorrow is a new day and I'm looking forward to Madi and Ramya's dance class and then working a bit in our garden.  We also have a family movie and some relaxing time planned. 

Though this week was busy with appointments, therapy, and homeschool, we had lots of fun times in between that I am thankful for.  I think these pictures speak for themselves and just how blessed we are...

(Relaxing and eating lunch after our urology appointment Thursday.  It was a BEAUTIFUL day out!)

 

 

Working on our garden...

 

 

Dressing up for silly photos at the Ice Cream Social at Madi's old preschool, Stepping Stones...

 

 

 

 

Relaxing foot soaks in momma's foot tub.  Madi said she couldn't feel it but was pretty sure it felt amazing.  She cracks me up!  She did also put her hands in it so she could feel the warm bubbles.

 

 

 

A Crazy Testing and Happy Birthday Kinda Day

Today was a crazy day, but a nice day too.  We woke up, did our morning routine, worked on homeschooling, went for a walk, then it was off to the doctor for Ramya and I.  Madi's respite worker, Amy, came to help out with the other two squirrels for a bit while I was gone and before David got off work at two to take over.  First was an ultrasound, followed by an appointment with the urologist (more to come on that soon).  After that we hustled out a CT scan and x-ray series to check her shunt.  The last two tests are in preparation for her upcoming neurosurgeon appointment, where we will make sure all is well with her shunt.

There was some good news and some bad news at the urology appointment.  The good news is that her kidneys look good.  There were no abnormalities or anything found, and her kidneys seem to be working well.  The doctor said her mitrofanoff is open and working, but the reason I can't get anything out of it is because of her constant leaking.  Madi is cathed through the urethra (what I call the "normal" way, since it's normal to us ;)) four times a day.  She pretty much stays dry between cathings.  Her bladder is very slightly spastic, but mostly is not.  It grows on it's own little curve and holds a decent amount of liquid.  Ramya is a whole new story, though.  She leaks like crazy and I get almost nothing out because she leaks so much.  I feel like I constantly change her and she is constantly wet.  She seems to hold very very little urine.  For example, today I cathed her "the normal way" in the morning.  She was soaking wet and I got very little out.  I skipped her early afternoon cathing as I was trying to keep her full for her ultrasound.  I just changed her and left for the doctor.  I gave her tons of water, as she was supposed to drink a ton for the ultrasound.  When we got there, she was wet again, but the tech said there was almost nothing in her bladder.  We cathed her a little later so the doctor could try her mitrofanoff, and we got almost nothing out.  Apparently this isn't really what they like to see, as we can't really achieve "social continence" like that.  The urologist wants her to be on dithropan (which she was on in the orphanage) to see if we can get her leaking under control.  Madi had terrible reactions to dithropan and is doing fine without it, so we have kept her off and just monitor her closely.  Looks like Ramya seems to be one of those kiddos who needs it, though.  He said we also need to do a urodynamics study and a VCUG to see just how much she can hold, to see if her muscles are just too week to hold things in, and to see if she still has renal reflux (among a few other things). 

He's a little confused at the motrofanoff surgery she went through.  Normally they go in and attach part of the intestines (I think that's what he said ;)) to the bladder to help it not be spastic and also to help it hold more liquid (again, I think that's what he said, I am sure some of you out there can help me explain this a little better ;)).  He doesn't think that part was done, and he has no idea why they wouldn't do that part too.  He said he needs to do the other two studies, in addition to the reasons posted above, to help him figure out exactly what they did do, and why they did what they did.  Basically he's stumped and thinks she really needed that part of the surgery and will need another surgery since that part wasn't done.  Drat.  He's also stumped by her MACE surgery.  He said it isn't in the typical spot and he doesn't know why they put it where they did, or if it will even work right how they did it.  Double drat.  He's going to take a better look at that later, but said not to use it for now.

Ramya did well with all of the testing and I think it also helped our bonding.  I stayed close and held her hand during the tests, assuring her that they would not hurt.  She seemed to trust me and want me close, so that made my momma heart happy.  I, of course, carried her around the hospital for all of her testing and she sat on my lap while we waited.  She seemed to enjoy the one-on-one time, though it wasn't for a fun reason.  They also realized it was her birthday and let her pick a little gift.  She picked a Littlest Pet Shop set with a girl doll in vintage clothing and a spider pet with a vintage hat.  She was very excited about it all!  They also gave her a little snack (goldfish crackers and fruit snacks) which she was happy about.  Overall we were gone quite a bit, from about 11:45 am until about 5:30 pm. 

Poor Conner isn't doing well with having me gone so much.  He now has my cell phone number memorized and calls me a lot while I'm away.  I don't mind and happily take his calls when I can, because I know it helps him feel better.  Today was a call about a big scratch he found on his foot that he doesn't know how he got.  He thought I needed to know and would want to look at it when I got home.  I assured him I would examine it and kiss it when I returned home, and I did.  He called about 3 other times, but I was only able to answer 1 other time.  He played with Amy and Madi a bit, but mostly said he wanted alone time and sat in the garage.  When I got home he told me he prayed for God to bring me home faster :(.  Poor little guy.  He did have fun going to the movies with David, so that is good, but I think I'm going to have to figure out a little mommy/son date this weekend.  He is seeming to really need some time with me.

Now to the FUN part of our day!  After dinner (thank GOD for leftovers that came from amazing friends who have been gifting us with yummy food!!) we gave Ramya her presents from us and did cake.  I am the lamest mom ever and she got a piece of pre-made, individually sold, cake from the store.  She loved it, though, and, literally, devoured every single bite!  I am throwing a family party on Sunday that will be the princess and the frog theme, so she will get a nice birthday party soon.  I am thankful that she was happy with her little party this evening, though, since I felt like I didn't do a very good job celebrating.  She enjoyed being sung Happy Birthday so much that she started singing it to herself too!  She loved all her gifts, but especially loved her baby doll and the outfit for it.  I had purchased it for her at a little toy shop by our house that was going out of business and was clearancing everything out.  I've been saving it for her and I'm so glad she loved it!  Both she and the baby are happily sleeping in our bed as we speak :).  I'm not sure if she's ever had her birthday celebrated before, but I am thrilled that she was able to come home in time for us to celebrate her!

 

Opening gifts is so fun!

 

Sister, what did you get???

My favorite birthday gift!

 



 

We had to change the clothing right away ;)

 

Blowing out her candle (she didn't want to go to the table and wanted to stay sitting with her baby in her lap, so I complied ;))

 

Finger-licking-good!

 

 

Many people have asked how I'm doing, so I thought I'd just tell everyone at once.  If you see me, you will likely think I look tired.  It's for a great reason... I'm tired!  Ha!  I don't think I've slept amazingly for, say, 6 years or so (wait, how old is Conner again ;)).  It's more than that, though, (because actually my kiddos are pretty good sleepers, thankfully!!).  I'm just tired because our days are busier right now.  Even just being home is busier.  There is more holding and lifting and more emotional "stuff" lately.  There are more phone calls to figure out appointments and insurance and all that fun stuff in there too.  There are adoption reports due and meetings with our post-adoption agency.  There is lots of running around and appointments, though I put off anything I can.  Conner and Madi have regressed a little and are needing more momma time.  And, amongst all of that, there is the typical hustle and bustle of life and housework.  There is also time with my hubby, which is just so needed and important, and worth every second!  I am thankful, though, that being a mom, and especially a mom of a child with special needs who needs occasional ambulance rides and hospital stays, has well-prepared me for life's busyness.  I have this supernatural ability to run effectively on minimal sleep, to go abnormal amounts of time with no food, water, shower, bathroom, etc..., and be able to manage a household and retain information (mostly ;)) from the doctors.  I am, of course, exaggerating a bit, as really, I am taking pretty good care of myself.  I make sure to sleep 7-8 hours a night, eat healthy(ish... lately I've been not doing very good in this area) meals, exercise, and get some "me" time in once everyone else has gone to bed.  However, I am still drained.  A second cup of coffee in the afternoon (if Starbucks wasn't so expensive, I'd have a major addiction going on there) has become part of my new routine and keeps me going.  I have started biting my nails again and am back down to sad little stubs.  I am happy to say, though, that I am still going, mostly with a smile on my face, and that is what matters!

 

Another question I get a lot is how people can pray for us.  Here are some ways you can pray...

1. That we can find peace and joy amongst our doctors appointments and the things taking us out of the home
2. For Conner and Madi as they adjust to me being gone a little more (thankfully this should taper off a bit after we get over this first hump of appointments)
3. For our bonding and attachment as a family as we try to balance it all
4. For grace for ourselves, as well for all of our kiddos, as we travel this journey together
5. That we can get Ramya on long-term care

 I'm sure I have lots more, but I'm getting tired and can't think of them all right now!  I want to update everyone on how our attachment is going too, but that will just have to wait for another night :).  

 

Our Dynamic Urodynamics Appointment

Ok, I admit, I failed at making the title enticing.  It's a bit hard to think of a clever title when you are talking about updates from the world of urology.  I tried, though.


Today Madi had a urodynamics study, her third thus far, and the results were pretty good! 


It was a looooooooooong study, much longer than normal.  First, the nurse had Madi lay down, but then left the room to talk to the doctor.  We happily waited.  Then, she cathed Madi and told me her urine was a little cloudy. I told her it was because I had to wake Madi up from a nap to get her there, and she had not had anything to drink since the last cathing, since she was napping.  She decided to test the urine, just to be safe (which was a decision I supported, don't get me wrong!), but left Madi all hooked up to the monitors and tubes while she left to test it.  The test showed a very slight infection, so she had the doctor spin it and look at it under a microscope.  The doctor did not see anything that looked like an infection/bad bacteria (bacteria is expected with a child cathed, so they only look for certain bacteria), so they sent it off to be cultured, then she came back to finish the test. 


The test itself took about 10 minutes, but poor Madi had to lay there closer to an hour.  She was SUCH a trooper, though!  They put a movie on for her, but she could care less about it, so I had to be creative in finding ways to convince her to lay still and not mess with the tubing.  Annie's organic gummy rabbits were amazing... for about 3 seconds until they were gone.  After that, the phone worked for a bit (looking at the photos and videos on it), then we read some books, played with her baby monkey stuffed animal, drew (while laying down), played with the stuffed animal more, sang songs, and did the etch-a-sketch.  Fun, fun!!


After the test, we met with the doctor, who said her bladder was not being spastic and appeared to be pretty normal, which is an improvement from last time.  He also said that it has grown and is holding more urine.  Though it is still not a "normal" bladder, which for her age would hold about 120 somethings of urine, it's pretty good, holding about 80 somethings of urine.  He started to tell me the dithropan was doing it's job, then remembered we took her off the dithropan ;). 


The plan is to watch and wait, and see what happens.  He moved her to once a year for her tests, which was nice.  Sadly, she cannot go off of antibiotics yet, though the doctor and I did have a nice lengthy discussion about why I hate them, and he agreed, so that was good.  He explained surgery options that might fix her reflux so that she didn't need it, and why those were just not good options right now.  So, for now, we watch and wait.


In other news, Madi also had wheelchair clinic this week at CRS.  She needed some small adjustments made to her chair.  Here's a picture of her and Conner goofing off together.  They had so much fun!

They tweaked the breaks to tighten them, lowered the foot plate, and we are good to go!  Madi hasn't even had this chair a year, and in the beginning, her feet did not come anywhere close to the foot plate.  This time they lowered the foot plate by 1 1/2 inches, so that her feet just rest nicely.  Good growing, big girl!

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