So many good posts this month... So much anguish... SO MUCH LOVE...
And look what Colleen did: www.facebook.com/event.php?eid=116929925033077
From the site:
October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world.
To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.
Get more info here: http://www.facebook.com/event.php?eid=116929925033077
Showing posts with label Spina Bifida Kids. Show all posts
Showing posts with label Spina Bifida Kids. Show all posts
Monday, October 18, 2010
Thursday, August 12, 2010
Guest Blogger: Joanna
There have been some recent developments with a few families in the SB community this summer that have been on my heart... a lot. Whenever friends are going through difficult changes it can touch your life - but even more so when their life is SO closely tied to yours. Whenever someone goes in for a CT scan, or has a bladder ultrasound, or receives the news that a shunt is needed, or that they have to start cathing....that is so, so real to me. I feel what they feel. I worry with them. I grow strong when they find renewed strength. It's such a bond. It's amazing...and sometimes hard. Because it makes you aware of all the things you could face...might face...will face...it's all unknown...and it's all real.
So sometimes it's hard to stay focused on the "live life day by day" motto with these possible glimpses into our future.
Tomorrow Jet is going in for a procedure. I don't really feel like going into it (it's nothing major) but it falls into that "bladder" category (one of the 3 B's of SB). The details aren't really important right now. Some of you know about it and know what a mind game making this decision has been for me. It's just one of those "extra" things we deal with sometimes and wish we didn't. But I have faith that it is all going to be okay - and we are blessed that this is only a little thing and not a major deal.
So I'm asking for prayers. Prayers for our peace of mind and an easy recovery for Jet. :)
And in the mean time I wanted to share something I wrote. I feel it's sometimes therapeutic to write out feelings (I think my fellow blogger mommies and daddies would agree) so I did...and it kind of turned into a poem...so I went with it. :)
"Most every day I feel so thankful for the life we live,
The many blessings we enjoy - the chance we have to give,
The sweetest little miracle with mischief in his eyes,
The lessons he has taught us have come as a surprise.
And yet this source of endless love - our sunshine in the rain!
This precious gift of joy - can also bring me the most pain.
It's a whirlwind of emotions when I look at his sweet face,
The beauty of his life - a perfect portrait of God's grace.
But paired with that - the struggles of the future we've been shown,
The worries and the fear that come with so much still unknown.
It's easy to stay positive when hard times pass him by...
But I know that there will be a day when he asks"Mommy, why?"
"Why?" to certain things that let him know he's not the same,
The medicines he hates or why he cannot join the game.
And then sometimes I think "if I could only know for sure..."
Or "maybe that won't happen..." Or "maybe they'll find a cure..."
But Maybe is a dangerous game that goes two ways when played...
And inevitably you find yourself in the "maybe-worst-case" game.
And that game makes things dark enough for doubt creep inside,
And even in an empty room you'll feel the need to hide,
The sunshine is long gone and it has now begun to rain,
And a growing sense of helplessness brings out forgotten pain,
There's nothing left in your control
or if there is it's slipping,
There fear of losing everything
you've been so tightly gripping,
Like waves crashing over you
you fight the urge to fall
You gasp for air that isn't there -
You feel no strength at all.
Lost, confused, angry, desperate
Reaching for a hand,
Something to hold on to as you fight to try and stand.
Then suddenly you feel you're being lifted from the deep,
You're standing at the top of what at one point seemed too steep.
What seemed to last forever, in a moment now has passed,
What came on unexpectedly, is over just as fast.
A peace grows into hope as you embrace the help you've found,
Then hope gives way to joy as Love and light shine all around.
Instead of drowning in the waves, you're standing on the shore,
The doubts that once had pulled you down aren't with you anymore.
What happened to the overwhelming loneliness and fear?
Were they never real? Could they just simply disappear?
No - they're just as real...and just as strong as they were then,
They can return at any moment should I choose to let them in.
Never - I may say - I'll never let in fear and doubt.
But everyone has days where they're just too hard to keep out.
So if you find yourself in waters just too deep to swim,
Nights too dark to find your path,
Fights too tough to win,
Instead of holding on so tight and sinking 'neath the weight,
Give up control you think you have
and trade your fear for faith."
~ For Jet ~
Joanna
So sometimes it's hard to stay focused on the "live life day by day" motto with these possible glimpses into our future.
Tomorrow Jet is going in for a procedure. I don't really feel like going into it (it's nothing major) but it falls into that "bladder" category (one of the 3 B's of SB). The details aren't really important right now. Some of you know about it and know what a mind game making this decision has been for me. It's just one of those "extra" things we deal with sometimes and wish we didn't. But I have faith that it is all going to be okay - and we are blessed that this is only a little thing and not a major deal.
So I'm asking for prayers. Prayers for our peace of mind and an easy recovery for Jet. :)
And in the mean time I wanted to share something I wrote. I feel it's sometimes therapeutic to write out feelings (I think my fellow blogger mommies and daddies would agree) so I did...and it kind of turned into a poem...so I went with it. :)
"Most every day I feel so thankful for the life we live,
The many blessings we enjoy - the chance we have to give,
The sweetest little miracle with mischief in his eyes,
The lessons he has taught us have come as a surprise.
And yet this source of endless love - our sunshine in the rain!
This precious gift of joy - can also bring me the most pain.
It's a whirlwind of emotions when I look at his sweet face,
The beauty of his life - a perfect portrait of God's grace.
But paired with that - the struggles of the future we've been shown,
The worries and the fear that come with so much still unknown.
It's easy to stay positive when hard times pass him by...
But I know that there will be a day when he asks"Mommy, why?"
"Why?" to certain things that let him know he's not the same,
The medicines he hates or why he cannot join the game.
And then sometimes I think "if I could only know for sure..."
Or "maybe that won't happen..." Or "maybe they'll find a cure..."
But Maybe is a dangerous game that goes two ways when played...
And inevitably you find yourself in the "maybe-worst-case" game.
And that game makes things dark enough for doubt creep inside,
And even in an empty room you'll feel the need to hide,
The sunshine is long gone and it has now begun to rain,
And a growing sense of helplessness brings out forgotten pain,
There's nothing left in your control
or if there is it's slipping,
There fear of losing everything
you've been so tightly gripping,
Like waves crashing over you
you fight the urge to fall
You gasp for air that isn't there -
You feel no strength at all.
Lost, confused, angry, desperate
Reaching for a hand,
Something to hold on to as you fight to try and stand.
Then suddenly you feel you're being lifted from the deep,
You're standing at the top of what at one point seemed too steep.
What seemed to last forever, in a moment now has passed,
What came on unexpectedly, is over just as fast.
A peace grows into hope as you embrace the help you've found,
Then hope gives way to joy as Love and light shine all around.
Instead of drowning in the waves, you're standing on the shore,
The doubts that once had pulled you down aren't with you anymore.
What happened to the overwhelming loneliness and fear?
Were they never real? Could they just simply disappear?
No - they're just as real...and just as strong as they were then,
They can return at any moment should I choose to let them in.
Never - I may say - I'll never let in fear and doubt.
But everyone has days where they're just too hard to keep out.
So if you find yourself in waters just too deep to swim,
Nights too dark to find your path,
Fights too tough to win,
Instead of holding on so tight and sinking 'neath the weight,
Give up control you think you have
and trade your fear for faith."
~ For Jet ~
Joanna
Tuesday, July 27, 2010
The Mobile Stander
I recently was catching up on some of the amazing blogs. (found on the left side of the screen) When I came across Leigh's post on Grey trying out a mobile stander. It stuck out to me because I can remember seeing Toby in a wheelchair for the first time, I can remember dragging it out of the car for the first time (and feeling like everyone was staring at me) Sometimes certainly medical equipment things that we welcome into our lives and our homes (Good things that help our children) Can still be hard.
So thanks Leigh for writing this up!!
The Mobile Stander...
One week during PT, Greyson's therapist mentioned that she would be bringing some new "equipment" the following week. I always look forward to when she does this...whether it works or not, it is always fun to se what new things we can try with Grey. The next week as she rang the doorbell and came in, I saw lots of straps, levers, brakes, and something that I wasn't prepared for...big wheels. Big wheels with handles. Right away I started to tear up. I tried not to let it show, but I see Liz once a week and she knows me well by now. She knew that I would need a few minutes to adjust after seeing these wheels wheels that I didn't think that I would see for awhile yet) so she did what any nice person would do, she pretended like she didn't see the tears in my eyes. She just kept on talking so I wouldn't have to. (Just one of the reasons why I love her.) She started telling me that this thing that to me looked very much like a wheelchair, was actually a mobile stander. She explained that this was a way for Grey to be upright and moving, just like all of his peers. As we were putting him in it, I could see the look on Grey's face. He was not excited about being strapped in and was squirming and trying to get out until...he discovered that he could move these big wheels all. by. himself. He started off by just moving one. Forward and back, back and forward he went. Soon, he discovered that he could use BOTH hands and that he could CRASH into the walls (his favorite part). With each passing movement his smile got bigger and bigger. The more I saw him smile and moving and having FUN, the more OK I became. It was easy for me to see that this was so good for him. This is just one example of Grey, my sweet little 17 month old, being ready for something long before I am. Everyday he teaches me something. Some days he teaches me to be patient, some days he teaches me to be determined, on this day he taught me to open my mind and except whatever it is that can help him.
..whether I am ready or not!
So thanks Leigh for writing this up!!
The Mobile Stander...
One week during PT, Greyson's therapist mentioned that she would be bringing some new "equipment" the following week. I always look forward to when she does this...whether it works or not, it is always fun to se what new things we can try with Grey. The next week as she rang the doorbell and came in, I saw lots of straps, levers, brakes, and something that I wasn't prepared for...big wheels. Big wheels with handles. Right away I started to tear up. I tried not to let it show, but I see Liz once a week and she knows me well by now. She knew that I would need a few minutes to adjust after seeing these wheels wheels that I didn't think that I would see for awhile yet) so she did what any nice person would do, she pretended like she didn't see the tears in my eyes. She just kept on talking so I wouldn't have to. (Just one of the reasons why I love her.) She started telling me that this thing that to me looked very much like a wheelchair, was actually a mobile stander. She explained that this was a way for Grey to be upright and moving, just like all of his peers. As we were putting him in it, I could see the look on Grey's face. He was not excited about being strapped in and was squirming and trying to get out until...he discovered that he could move these big wheels all. by. himself. He started off by just moving one. Forward and back, back and forward he went. Soon, he discovered that he could use BOTH hands and that he could CRASH into the walls (his favorite part). With each passing movement his smile got bigger and bigger. The more I saw him smile and moving and having FUN, the more OK I became. It was easy for me to see that this was so good for him. This is just one example of Grey, my sweet little 17 month old, being ready for something long before I am. Everyday he teaches me something. Some days he teaches me to be patient, some days he teaches me to be determined, on this day he taught me to open my mind and except whatever it is that can help him.
..whether I am ready or not!
Monday, July 26, 2010
Field trip to the zoo
This week, Esther-Faith's preschool class went on a field trip to the zoo. She LOVES the zoo. This time, we tried something new. She wore her braces while sitting in her wheelchair so that she could get out from time to time. It seemed to work, but after a while, I could tell that she was uncomfortable and tired. I also didn't take her walker into the zoo. So, when she got out of the wheelchair, she had to hold onto me or something else.
I think she enjoyed the extra bits of freedom.
And she gave me lots of opportunities to snap some photos.
All in all, it was a great trip to the zoo. VERY hot. EXTREMELY humid. But fun.
Lately, Esther-Faith has been somewhat resistant to continuing to learn the crutches. As we walked around the zoo, there were lots of opportunities for me to gently emphasize that crutches sure would be nice. She is persistent--she kept reminding me that a walker would be useful, too.
Sigh.
We've also been working on independent wheelchair use instead of us pushing her all the time. Instead of being behind her, I can walk beside her--holding her hand--while she navigates her chair with the other. She is still learning that in order for us to keep up with her at the pace she wants to go, we've got to jog. And she's still learning to ALWAYS make sure she can see one of her grownups. But, we keep practicing. Giving her opportunities to gain some independence within some very clear boundaries. But she is persistent. And VERY fast.
Sigh.
When we got home from the zoo, she ate a big lunch and took a LONG, peaceful nap. We're going to keep practicing. The wheeling and the walking. The holding on and the letting go. Eventually, she'll spread her wings and soar.
I think she enjoyed the extra bits of freedom.
And she gave me lots of opportunities to snap some photos.
Esther-Faith LOVES the polar bears.
One of them is named Aurora.
We watched one catch a fish and eat it.
For a while, we were the only ones watching the penguins.
She walked back and forth holding onto the glass.
This penguin followed her every move.
Watching the new, baby manatee.
Esther-Faith was SO excited that the turtle touched the "grownup."
The carousel conductor took this photo.
He was super nice.
While seeing and watching the baby gorilla
cemented her decision to become a "doctor for animals,"
She was much less sure about this guy.
In fact, she wheeled away from him, and turned her chair.
He mimicked her by turning his back.
They watched each other out of the corners of their eyes.
She inched closer.
He turned a little.
She leaned in close to the glass.
He turned and made this pose, staring right at her!
Always a favorite: The flamingos.
Cause they're pink.
Cause they're pink.
All in all, it was a great trip to the zoo. VERY hot. EXTREMELY humid. But fun.
Lately, Esther-Faith has been somewhat resistant to continuing to learn the crutches. As we walked around the zoo, there were lots of opportunities for me to gently emphasize that crutches sure would be nice. She is persistent--she kept reminding me that a walker would be useful, too.
Sigh.
We've also been working on independent wheelchair use instead of us pushing her all the time. Instead of being behind her, I can walk beside her--holding her hand--while she navigates her chair with the other. She is still learning that in order for us to keep up with her at the pace she wants to go, we've got to jog. And she's still learning to ALWAYS make sure she can see one of her grownups. But, we keep practicing. Giving her opportunities to gain some independence within some very clear boundaries. But she is persistent. And VERY fast.
Sigh.
When we got home from the zoo, she ate a big lunch and took a LONG, peaceful nap. We're going to keep practicing. The wheeling and the walking. The holding on and the letting go. Eventually, she'll spread her wings and soar.
He gives power to the weak
and strength to the powerless.
Those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.
Isaiah 40:29, 31 (NLT)
Thursday, May 27, 2010
Featured Child: Aiden
Aiden's Story
I had a pretty uneventful pregnancy, at 20 weeks we found out we were having a boy and were so excited. On November 25th 2007 Aidan was born and we were ecstatic. After cleaning him up the nurse practitioner brought him to me and said I have to show you something. She turned my son over and pointed out a raised bump on his back and said I think he has spina bifida. Since his back was closed they waited until morning to take him to the Children's hospital. I was numb, I didn't understand what happened or exactly what it was. After Aidan was sent to the nicu he had multiple tests over the next few days, after the mri the neurosurgeon confirmed he had spina bifida. He was diagnosed with lipomyelomeningocele at the L5 level. His spinal cord grew into a fatty mass covered with skin. We were able to take him home for a week before surgery. His first surgery went well but it took another surgery and 2 months for his back to finally heal. Aidan is now 2 and the most curious and outgoing boy. He has such a determination to do things for himself, it's amazing to watch him learn. He started walking at about 18 months and now never stops. He loves books and cars and helping with whatever we are doing. Finding other moms on the babycenter message board has been the most amazing resource. It's wonderful that I get to celebrate my sons accomplishments with other parents that understand how much our kids can do.
I had a pretty uneventful pregnancy, at 20 weeks we found out we were having a boy and were so excited. On November 25th 2007 Aidan was born and we were ecstatic. After cleaning him up the nurse practitioner brought him to me and said I have to show you something. She turned my son over and pointed out a raised bump on his back and said I think he has spina bifida. Since his back was closed they waited until morning to take him to the Children's hospital. I was numb, I didn't understand what happened or exactly what it was. After Aidan was sent to the nicu he had multiple tests over the next few days, after the mri the neurosurgeon confirmed he had spina bifida. He was diagnosed with lipomyelomeningocele at the L5 level. His spinal cord grew into a fatty mass covered with skin. We were able to take him home for a week before surgery. His first surgery went well but it took another surgery and 2 months for his back to finally heal. Aidan is now 2 and the most curious and outgoing boy. He has such a determination to do things for himself, it's amazing to watch him learn. He started walking at about 18 months and now never stops. He loves books and cars and helping with whatever we are doing. Finding other moms on the babycenter message board has been the most amazing resource. It's wonderful that I get to celebrate my sons accomplishments with other parents that understand how much our kids can do.
Sunday, May 23, 2010
I'm sure most of you have seen this somewhere, but I hadnt. So I'm going to post it in the hopes that someone who hasnt seen it WILL see it.
Its a little printable book about a little boy with Spina Bifida. Toby's been questioning a little and knows things are different. I am thinking about printing this up and then even making him a little doggie with the scars like in the book.
Click HERE to see the PDF version and print it out.
Its a little printable book about a little boy with Spina Bifida. Toby's been questioning a little and knows things are different. I am thinking about printing this up and then even making him a little doggie with the scars like in the book.
Click HERE to see the PDF version and print it out.
Tuesday, May 11, 2010
Featured Child: Zach
Zach's Spina Bifida Level is: L3/L4
Scary Moments Happen:
The two scariest moments for me was seeing him the first time after his surgery. Seeing your child in the incubator hooked to tubes and monitors. The incision, was also much larger than I ever expected.
We are stronger than we ever thought we could be:
My strongest moment, was when he had his first shunt revision, October of 2009. We were on a famiy camp trip, with my entire side. Zach had been getting sick, he and I were just not getting any sleep and it is hard to deal with a sick little guy in a camper. I decided that I was going to head home, my husband and daughter stayed. We decided that it wasn't fair for our daughter to miss the family trip. When I got home, I checked in with the peditricians nurse line. He said due to his conditions, their protocal is to have me take him to the ER. So off I went. Managing to break my phone on the why there. I honestly thought it was the flu or he was teething, as he has just been seen by his nueoroligist on the 15th and this was the 24th. They did a few tests and I was told that he would be going into surgery within the hour. It was just Zach and I and I didn't have a way to let my husband know. Luckly i found my husband's dad number written down in a notebook I had it was a local number from the hospital. He called my husband to let him know. The shunt surgeries have been very difficult for me, but each time we have seen amazing positive changes in our son.
People still say stupid things:
What is his life expectancy. This was a person I went to see to try to help me deal with the rollercoaster ride of emotions, prior to his birth. Needless to say I never went back.
There are those who DO encourage:
We had to learn to cath at prior to being discharged. My husband was ready to go, as soon as they told us. Me not so much. One day my husband was at work and I decided I was going to try. I let the nurse know I was ready. We started the process and I began to cry. She told me not to worry about it. We would take it as slow or fast as I need, but that she was there to support me. It as something simple, but it meant a great deal to me. I didn't feel that we were just another patient.
Favorite Food:
Meat and Whip Cream (extra calories)
Favorite Feature:
His smile. He is the biggest little flirt.
A moment of Triumph:
The weekend before christmas 2009, he got into the sitting position by himself
A trial:
bringing your baby home : This was very scare for me. After birth Zach was taken to Children's hospital within three hours. He had his surgery the next day, that night he stayed in NICU. He was doing so well we were moved to the general floor. I like this as it let us be more involved in his care. However, I really struggled with taking care of his incisions. I cried, when ever I tried to look at it. I was afraid that I would not be able to properly care for it at home and he would ended up with an infection. We were also cathing and were completely exhusted. We stayed for 20 days. We just took it one day at a time and here we are now, he is almost two.
Thanks for all you moms who take the time to do this!! If you have sent me one and havent seen your child yet, he/she is coming!! If you havent sent me info about your child and would like to be "Featured" feel free to email me at Kari.leann@hotmail.com
Sunday, May 9, 2010
Doctors
Just as every child is different, every child with Spina Bifida is different. Each requires a different set of doctors and specialists. Sure, there are some that are common across the board. But sometimes, there are a couple that it seems only your child has to deal with.
I remember the comfort in talking about Clinic without having to go into an explanation. Because the family we were chatting with already knew. They had walked the same road. They had sat in a room waiting for doctor after doctor to examine their child. What a relief!
And that is what this blog is about. Shared experiences. Encouragement through differences. Holding each other up and standing in the gap for each other when the going gets tough. Or the going just stops.
What a blessing Kari is to have started SpinaBifidaKids. And what an honor it is for me to contribute bits and pieces of our journey each week.
So, what do you want to know? What doctors do you visit on a regular basis? What doctors seem new or unique to your child's situation? What do you want to know about? What do you want to read? What makes you curious? Jealous? Oblivious? What have you learned along the way?
Next week I'll start a series on doctors and medical professionals. I would love some input as to which doctors you typically deal with.
Thanks for being part of the community.
I remember the comfort in talking about Clinic without having to go into an explanation. Because the family we were chatting with already knew. They had walked the same road. They had sat in a room waiting for doctor after doctor to examine their child. What a relief!
And that is what this blog is about. Shared experiences. Encouragement through differences. Holding each other up and standing in the gap for each other when the going gets tough. Or the going just stops.
What a blessing Kari is to have started SpinaBifidaKids. And what an honor it is for me to contribute bits and pieces of our journey each week.
So, what do you want to know? What doctors do you visit on a regular basis? What doctors seem new or unique to your child's situation? What do you want to know about? What do you want to read? What makes you curious? Jealous? Oblivious? What have you learned along the way?
Next week I'll start a series on doctors and medical professionals. I would love some input as to which doctors you typically deal with.
Thanks for being part of the community.
Sunday, April 25, 2010
Leading the Way to the Future
(NOTE: Clicking on a link in this post will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)
The Spina Bifida Association of America (www.sbaa.org) is preparing for the 37th annual conference. This year, the conference will be held in Cincinnati, Ohio from June 27 through June 30. From the SBA web site:
Please join the Spina Bifida Association (SBA) for the 37th National Conference to be held at the Hyatt Regency Cincinnati (Cincinnati, Ohio) from June 27 - June 30, 2010. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians have the unique opportunity to gain information on the latest medical care and network on various issues which affect their lives and professions.
Many local Spina Bifida organizations offer scholarships to families so that they can attend the conference. If you are close and attending is a possibility, it would be great to see you there. I'm hoping to spread the word about SpinaBifidaKids.blogspot.com at the conference.
The Spina Bifida Association of America (www.sbaa.org) is preparing for the 37th annual conference. This year, the conference will be held in Cincinnati, Ohio from June 27 through June 30. From the SBA web site:
Please join the Spina Bifida Association (SBA) for the 37th National Conference to be held at the Hyatt Regency Cincinnati (Cincinnati, Ohio) from June 27 - June 30, 2010. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians have the unique opportunity to gain information on the latest medical care and network on various issues which affect their lives and professions.
- Learn up-to-the-minute information about urology, orthopedics, neurology, neurosurgery treatment, and much more!
- Attend practical workshops and special programming that address your own interest areas. (schedule at a glance)
- Network with various interest groups - from others living with Spina Bifida to health professionals and product manufacturers.
- Find out how researchers are paving the way for more knowledge about Spina Bifida.
- Hear from leading Spina Bifida partners about the important role advocacy plays in our Community's success.
Many local Spina Bifida organizations offer scholarships to families so that they can attend the conference. If you are close and attending is a possibility, it would be great to see you there. I'm hoping to spread the word about SpinaBifidaKids.blogspot.com at the conference.
Thursday, March 18, 2010
Featured Child: Autumn
Our little Autumn is an inspiration to our family. Before she was born we knew she had spina bifida, hydrocephalus, and ACII Malformation. We trusted God from day one that He would take care of our daughter and never questioned why this was happening to our baby girl. We felt blessed that it was "just" spina bifida and felt we could handle taking care of a child with special needs. After she was born, Autumn had her back closure and shunt surgery and was doing pretty well. About 2 days later though she would desat anytime she was fed by mouth and having episodes at night where she would completely stop breathing, turn blue, and the nurses would have to bag her until she would start breathing on her own again. We then realized her ACII was very severe which only happens in about 5% of babies with spina bifida. She was put on CPAP and then we did a decompression surgery to see if that would relieve some of the pressure on her ACII and stop the episodes. Well, it did not and we could not get her off the ventilator after the surgery. We then had to make the dreaded decison to give her a trach so that she could come home with us. We were ready to deal with a child who may or may not walk or who may have some bladder/bowels issues but taking care of a child with central apnea and who stops breathing at any time was a completely different story and one we were not prepared for. After 4 months in the hospital and living 6 hours away from home for over 5 months..we were finally able to bring Autumn home. We were concerned how it was going to be caring for a baby with a trach and who was on a ventilator 24/7 and also taking care of the needs of our other 2 children. We had been trained well though and we were ready to set out on this new calling God had placed in our hands. Autumn though has made this journey such a sweet one. She is truly an inspiration to us and always has a smile on her face (even through her tough therapy sessions). She is one determined little girl and finds a way to get what she wants and communicate her needs to us. She is such a joy to be around and touches every heart that she meets. As soon as you look into those big, blue eyes and she flashes her toothy smile you instantly do not feel sorry for her but know that she has been blessed with the strength,love,and joy that most of us spend our entire lives searching for. We are amazed at what she has taught us in her short 16 months of life and can only imagine what she's going to conquer in the years to come. We thank God everyday for our daily reminder by Autumn to choose to be happy in every situation we are given and to live life with a smile on our face. If she can do it daily, so can we! Thanks for letting me share my special girl with all of you.
Saturday, March 6, 2010
Featured Child: Grey
September 24, 2008. This is the day that changed our lives forever, the day that we were told that we were having a son. I remember it all so clearly, as the ultrasound technician told us that it was a boy tears of joy streamed down my face. Only minutes later, those tears of joy turned into tears of hurt, sorrow, and fear.
The first few weeks after we were told that our son had spina bifida were quite possibly the worst of our lives. We were told that our son may never walk, that he would have bowel and bladder problems, and that he may have brain damage. We did as much research as we could, and slowly we came to realize that spina bifida was not a death sentence. People living with spina bifida lead very normal, fulfilling, happy lives. They have jobs, get married, have kids. I started to get in contact with adults living with spina bifida and with parents of children who have spina bifida. The conversations that I had with those "strangers" helped to calm my fears and ease my pain. As with most everything, time heals. The hurt and sorrow left us and in it's place were joy, excitement, and love.
Today, as Greyson approaches one, he is rolling, sitting, and army crawling all over. He is working so hard at standing and loves to be in his stander. He has a smile for anyone who glances his way and if your lucky, you can even get a kiss and a hug. He is the happiest little guy around. I can now look back on September 24, 2008 and smile. Smile because that is the first glimpse that I had of my son. The first time that I got to see his little face, hands, and feet (even if it was on an ultrasound screen). My life is no longer clouded with fear and sadness, but is filled with an overwhelming sense of love and peace. God has given my husband and I the most precious gift. He has given us our Greyson.
Thursday, February 25, 2010
Feature Baby: Louie
Finding Out
Right between the first and second trimester, I was given a test to rule out any neuro-tube defects. I got it done, and so far all the test I had were coming back with good news. Well, not this one. "Mrs. Jara, it seems like one or both babies might have Spina Bifida." I was shocked, especially because since I knew I wanted to have children I made sure to take the prenatal pills and take care of my body as much as I could. I was sent for an ultrasound 2 weeks later and, they found the Lemon head shape on Louie, Baby number 2. My boys never changed position while I was carrying them, so I knew who was who. Plus according to the Ultrasound tech, Louie was conceived 24 hours after Joaquin. How do they know, I have no idea. So I am at the hospital, shocked and scared. Since it was pretty early, the OB did not want to diagnose because baby was still small and he had some growing to do. So, I did not own the news.
Choosing Life
I go back around the 20th week, and it was confirmed. Louie has spina bifida, and the following were the words of the OB, "He has spina bifida, may we suggest fetal reduction. His quality of life will not be the greatest and you should consider the reduction. He may not walk, he may need a trach, he may have hydrocephelus, etc." I could not contain my emotions. I mourned my healthy baby for a week, but I made the decision that I was not going to give up on his life, and I was to proceed with the pregnancy. I was asked about the reduction 3 times, and all 3 times I declined. "Please do not ask me again!" I told the doc. I am keeping this baby and i will make sure he has the best life possible.
Mourning
So after a week or so of crying, I got on gears, and researched as much as I can. Every night after I got home from work that was my mission, to educate myself on his condition. I joined a support group on babycenter.com that has been a lifesaver and such an advocate for Spina Bifida along with the reassuring words of a great and educated Spina Bifida Nurse (who lost her job because budgetary reason..DONT GET ME STARTED ON THIS!) Well, when it came time to the visits with the Spina Bifida team, I felt I was empowered! I was able to talk their language and my outlook on the quality of life for my son was immense!!! So I carried on with my pregnancy and prayed for the doctors to be wrong.
Ready or Not Here They Come
Two months later, something unexpected happen. Joaquin and Luis pulled a fast one on me and decided I was going to do things on their terms. They started to alert me they wanted out!! On February 23, I was at work and I felt some contractions. I didn't pay any attention to them since I new it could happen. I went shopping after work, got some popeyes' and went home. Once I got home the contractions got a stronger, I knew that wasn't a good sign but decided t go to the ER anyways to get checked out. I had a feeling it was nothing and I was going to get sent home on bed rest..man was I wrong!! I was 3 cm dilated and i was not going home until these boys were born..........
I was not able to see my boys untiL 24 hours later, I called the NICU to check on them and the first thing the nurse told me is that they are ok and Luis was moving his legs, a lot. I couldn't believe what I was hearing. I was so happy, but he was not out of danger yet. He was scheduled for his back repair the following day. The risk was high, the Docs will "fix" him, but some nerves will run the risk of damage, and his leg mobility would decrease. 4.5 hours later, he was out of his surgery. Everything went fine. I went to see him, and he was moving his legs, again. I have never been so happy in my life, I gave God his praises and thanked him for really taking care of both my boys. A month later, he had his shunt surgery, he did have mild hydrocephelus; but once again, the Docs "fixed" my baby. One thing did happen that kinda scared the beejesus out of me. Luis developed dysphagia. Because of multiple surgeries and the intubating, his throat muscles got a bit weak. When he ate, he aspirated therefore he would choke up a lot. Since I had informed myself about Spina Bifida, the eating issues really got me scared and I was a wreck. Thankfully, after a swallow study, Docs determined it was dysphagia, and we thickened his breast milk with cereal, hence the chubby cheeks!
I do not want to say that the NICU stay for my boys was a blur, because I hated leaving them there. But, I know they were better there than with me. My boys, Thanks to GOD, were never in a situation in which they were sick. They were born premature, but complete. They both hit their milestones, got strong and came home. Joaquin did develop a double hernia after he came home, very common for preemies, but had it repaired and has been great since then.
Luis Now
Luis gets physical therapy once a week, developmental therapy and occupational therapy twice a month as soon as Early Intervention finds one and speech therapy to make sure he continues on track with his feedings. He is sitting us on his own now, rolls over, and rolls around all over the living room. All of his doctors are certain he will walk with proper therapy and bracing. We still do not know his level, and I think we are going to leave it at that. We do not want to determine his physical abilities based on a "level" We will know if there are any problems in relation to Spina Bifida as he grows up and start hitting his developmental phases, but to be quite honest, I have a perfect baby. I do have my days in which I am so sad because not one mom wants their children to have any challanges growing up and then I get to thinking about the future and how much he will have to face but, I wil not have had it any other way.The hardest part for me was my pregnancy.My boy will be 1 year old on February, and to me it means so much. I love my boys so much, I can not take it sometimes. God doesn't send just anyone a special needs child, I am glad he choose me and that he gave me beautiful boys, Luis and Joaquin.
Right between the first and second trimester, I was given a test to rule out any neuro-tube defects. I got it done, and so far all the test I had were coming back with good news. Well, not this one. "Mrs. Jara, it seems like one or both babies might have Spina Bifida." I was shocked, especially because since I knew I wanted to have children I made sure to take the prenatal pills and take care of my body as much as I could. I was sent for an ultrasound 2 weeks later and, they found the Lemon head shape on Louie, Baby number 2. My boys never changed position while I was carrying them, so I knew who was who. Plus according to the Ultrasound tech, Louie was conceived 24 hours after Joaquin. How do they know, I have no idea. So I am at the hospital, shocked and scared. Since it was pretty early, the OB did not want to diagnose because baby was still small and he had some growing to do. So, I did not own the news.
Choosing Life
I go back around the 20th week, and it was confirmed. Louie has spina bifida, and the following were the words of the OB, "He has spina bifida, may we suggest fetal reduction. His quality of life will not be the greatest and you should consider the reduction. He may not walk, he may need a trach, he may have hydrocephelus, etc." I could not contain my emotions. I mourned my healthy baby for a week, but I made the decision that I was not going to give up on his life, and I was to proceed with the pregnancy. I was asked about the reduction 3 times, and all 3 times I declined. "Please do not ask me again!" I told the doc. I am keeping this baby and i will make sure he has the best life possible.
Mourning
So after a week or so of crying, I got on gears, and researched as much as I can. Every night after I got home from work that was my mission, to educate myself on his condition. I joined a support group on babycenter.com that has been a lifesaver and such an advocate for Spina Bifida along with the reassuring words of a great and educated Spina Bifida Nurse (who lost her job because budgetary reason..DONT GET ME STARTED ON THIS!) Well, when it came time to the visits with the Spina Bifida team, I felt I was empowered! I was able to talk their language and my outlook on the quality of life for my son was immense!!! So I carried on with my pregnancy and prayed for the doctors to be wrong.
Ready or Not Here They Come
Two months later, something unexpected happen. Joaquin and Luis pulled a fast one on me and decided I was going to do things on their terms. They started to alert me they wanted out!! On February 23, I was at work and I felt some contractions. I didn't pay any attention to them since I new it could happen. I went shopping after work, got some popeyes' and went home. Once I got home the contractions got a stronger, I knew that wasn't a good sign but decided t go to the ER anyways to get checked out. I had a feeling it was nothing and I was going to get sent home on bed rest..man was I wrong!! I was 3 cm dilated and i was not going home until these boys were born..........
I was not able to see my boys untiL 24 hours later, I called the NICU to check on them and the first thing the nurse told me is that they are ok and Luis was moving his legs, a lot. I couldn't believe what I was hearing. I was so happy, but he was not out of danger yet. He was scheduled for his back repair the following day. The risk was high, the Docs will "fix" him, but some nerves will run the risk of damage, and his leg mobility would decrease. 4.5 hours later, he was out of his surgery. Everything went fine. I went to see him, and he was moving his legs, again. I have never been so happy in my life, I gave God his praises and thanked him for really taking care of both my boys. A month later, he had his shunt surgery, he did have mild hydrocephelus; but once again, the Docs "fixed" my baby. One thing did happen that kinda scared the beejesus out of me. Luis developed dysphagia. Because of multiple surgeries and the intubating, his throat muscles got a bit weak. When he ate, he aspirated therefore he would choke up a lot. Since I had informed myself about Spina Bifida, the eating issues really got me scared and I was a wreck. Thankfully, after a swallow study, Docs determined it was dysphagia, and we thickened his breast milk with cereal, hence the chubby cheeks!
I do not want to say that the NICU stay for my boys was a blur, because I hated leaving them there. But, I know they were better there than with me. My boys, Thanks to GOD, were never in a situation in which they were sick. They were born premature, but complete. They both hit their milestones, got strong and came home. Joaquin did develop a double hernia after he came home, very common for preemies, but had it repaired and has been great since then.
Luis Now
Luis gets physical therapy once a week, developmental therapy and occupational therapy twice a month as soon as Early Intervention finds one and speech therapy to make sure he continues on track with his feedings. He is sitting us on his own now, rolls over, and rolls around all over the living room. All of his doctors are certain he will walk with proper therapy and bracing. We still do not know his level, and I think we are going to leave it at that. We do not want to determine his physical abilities based on a "level" We will know if there are any problems in relation to Spina Bifida as he grows up and start hitting his developmental phases, but to be quite honest, I have a perfect baby. I do have my days in which I am so sad because not one mom wants their children to have any challanges growing up and then I get to thinking about the future and how much he will have to face but, I wil not have had it any other way.The hardest part for me was my pregnancy.My boy will be 1 year old on February, and to me it means so much. I love my boys so much, I can not take it sometimes. God doesn't send just anyone a special needs child, I am glad he choose me and that he gave me beautiful boys, Luis and Joaquin.
Thursday, February 18, 2010
Featured Child: Alex
I am the proud mom of twin boys, Alex and Nicholas. They are now 9 months old "officially" but because they were born three months early, everyone refers to them by their adjusted age of 6 months. We learned at our 18 week ultrasound that Alex had Spina Bifida. To be honest we were not even sure what that was and we were terrified of what it would mean for him and how we could do right by him as his parents. We spent the rest of our pregnancy learning all we could to try to be prepared. We had complications during the pregnancy and the boys had to be delivered very early (not related to SB). Alex was only one pound, 10 ounces. He had to have his back closure and shunt placed when he was so incredibly little. We were told many potential negative things by the "experts" during this time, especially when factoring in the prematurity but I have to tell you, Alex has already defied so many of their own expectations and "predictions".
He is such a happy, delightful baby and simply thriving. At 6 months, he is like any other baby. He is babbling non stop, putting everything in his mouth, rolling, working on sitting. You can see the wheels turning when he meets someone new or finds a new toy. He stares so intently as if he's just figuring everything out and then out of nowhere he rewards you with the biggest grin and giggle, it cracks us up every time. Our new favorite thing to watch is seeing Alex adore his brother. He looks for him wherever he is, reaches out to grab his hand when they are playing and "talks" to him when they are in their crib.
Life with the twins is certainly never dull. Especially because they were born so premature and both of them have many follow up appointments, nursing visits, therapy, etc. I quit my job as a social worker to be home with them and manage their "social" calendar. It is like any other parent has described it, the most challenging and yet the most rewarding job I'll ever have!
Holli
Friday, January 29, 2010
Featured Child: Roman
Roman's Story
I believe that everyone has memorable NICU experiences when it comes down to it. The ones that make you smile at the thought and the ones that make you teary.
A NICU Easter Miracle
"My most memorable and great nicu experience happened on Easter Sunday. Roman had his second back closure surgery the night before. They removed the cath that morning and we were waiting for him to pee on his own. We waited, and waited and...waited.
My family arrived and while Roman was catching up on his sleep we decided to have Easter dinner at a restaurant across the street. I had such a horrible feeling that when we walked back in the nurses were going to tell me he still hadn't peed and that I would need to learn how to cath him. In fact, I was scared to even open the doors. But, when we went back in the nurse said, "he peed and he peed a LOT!" After 8 hours, he peed. My son peed. We're at 9 months, two weeks and 5 days with no cath. Who would have thought a little urine would be my Easter Miracle?"
I believe in being honest. Honest consists of sharing joys and sorrows.
Sometimes It's just plain Scary
"Our scariest time in the NICU was the very first time I met my son. I gave birth via c-section, so all I could do was listen to him cry. From across the room they showed me his face, they showed me his back and they left. I didn't get a kiss, I didn't get to touch him. All I had was that cry. Four hours later I got to meet him. When I was rolled into the nicu he was wrapped in plastic, and sleeping on his belly. He was all alone under a heating lamp and I was too afraid to touch him.
Babies should be born, and then hugged and held and rocked. Not whisked away to a table, alone. I guess the nurse saw how scared I was. She asked me if I would like to hold him. I guess she also saw my face ask "how?" because she immediately gave me strict instructions. That was the scariest day, but when he looked at me, and I could feel him breathing on me, it quickly became the best day of my life. "
These Kids are Kids
I wanted to ask just normal kid questions. The ones that dont have ANYTHING to do with SB.
"Roman's favorite food is, weirdly, prunes. I can't help but to laugh when he flashes me that big purple grin."
"I can't honestly think of many things that melt my heart more than....prunes, and urine, and crying."
I believe that everyone has memorable NICU experiences when it comes down to it. The ones that make you smile at the thought and the ones that make you teary.
A NICU Easter Miracle
"My most memorable and great nicu experience happened on Easter Sunday. Roman had his second back closure surgery the night before. They removed the cath that morning and we were waiting for him to pee on his own. We waited, and waited and...waited.
My family arrived and while Roman was catching up on his sleep we decided to have Easter dinner at a restaurant across the street. I had such a horrible feeling that when we walked back in the nurses were going to tell me he still hadn't peed and that I would need to learn how to cath him. In fact, I was scared to even open the doors. But, when we went back in the nurse said, "he peed and he peed a LOT!" After 8 hours, he peed. My son peed. We're at 9 months, two weeks and 5 days with no cath. Who would have thought a little urine would be my Easter Miracle?"
I believe in being honest. Honest consists of sharing joys and sorrows.
Sometimes It's just plain Scary
"Our scariest time in the NICU was the very first time I met my son. I gave birth via c-section, so all I could do was listen to him cry. From across the room they showed me his face, they showed me his back and they left. I didn't get a kiss, I didn't get to touch him. All I had was that cry. Four hours later I got to meet him. When I was rolled into the nicu he was wrapped in plastic, and sleeping on his belly. He was all alone under a heating lamp and I was too afraid to touch him.
Babies should be born, and then hugged and held and rocked. Not whisked away to a table, alone. I guess the nurse saw how scared I was. She asked me if I would like to hold him. I guess she also saw my face ask "how?" because she immediately gave me strict instructions. That was the scariest day, but when he looked at me, and I could feel him breathing on me, it quickly became the best day of my life. "
These Kids are Kids
I wanted to ask just normal kid questions. The ones that dont have ANYTHING to do with SB.
"Roman's favorite food is, weirdly, prunes. I can't help but to laugh when he flashes me that big purple grin."
"I can't honestly think of many things that melt my heart more than....prunes, and urine, and crying."
Subscribe to:
Posts (Atom)