Monday, October 31, 2011

Spina Bifida Awareness: Meet Madison!

For this LAST day of October, we have the privilege of meeting Madison!

When I was a young girl, I used to fear that God would give me a special needs child.  It was always in the back of my mind that this was something that I would not handle well, and I feared that God would test me.  I have seven children, and with each pregnancy, I worried, and with each one, up through the  sixth, I was relieved to find out that everything was "typical."  When I got pregnant with Madison I had been reassured by my doctor that with each normal pregnancy, the chances of something going wrong decreased.  I really didn't worry, and when I went in for my ultrasound at 16 weeks, I was only concerned with whether this was a girl or a boy.  When the tech had me roll over to face the wall, so she could get a different view, I didn't worry.  When she took 10 times the number of pictures, and got very quiet during the exam, I pondered it, but didn't worry.  Then I went in to see the doctor, and he said that they couldn't get a good look at the spine, so I needed a level II ultrasound.  A full week of anguish, hoping for the ultrasound to be normal.  But I knew, in my heart that something was wrong. 

When we received the diagnosis "spina bifida" I was heart broken.  Our doctors were quite optimistic, which I am very thankful for.  Nobody encouraged me to terminate (although it was offered), and they gave me some booklets on the condition which were helpful and scary at the same time.  I soon found a support group at and finally felt like I had arms of understanding surrounding me.  It was a grieving process realizing that the baby I had pictured was going to be challenged in ways I couldn't even know yet.  When Madison was born, we were told her defect level was L4-5 and that she had a 40% chance of walking.  I was angry at that statistic, and never shared it with anyone.  I knew that Madison would show us what she could or couldn't do.  She had a shunt placed at 6 months.  She crawled at 10 months.  Walked with a walker at 15 months.  Now walks independently with AFOs since about 27 months.  She dances, she sings, and will be running soon, I know it. 

Now, almost 3 year later, I realize what a true blessing this journey has been, and will continue to be.  Madison lights up the house with her sharp and sweet personality, and fills the house with noise, as she is by far my loudest child.  She is beloved by all her siblings, and I know they will have a level of understanding for others in this world that have challenges as well.  How can you place value on these things?  They are without price.  I thank God for Madison, and pray He continues to use her and us to bless others as we come into contact with them.  I know I have been blessed beyond measure by all the families I've met in the spina bifida community.  They are amazing people.

In Christ,

Php 4:11b   for I have learned, in whatsoever state I am, therewith to be content.

Sunday, October 30, 2011

Spina Bifida Awareness: Meet Jeremiah!

Today we share a story about a handsome little fella, named Jeremiah!! Here is what his mom, Hannah has to say about him:

We found out at my 20 week ultrasound that Jeremiah our son had Spina Bifida. Actually, our doctor never said Spina Bifida when he was explaining everything to us. He kept saying myelomenigocele, a term I had never heard before. As we were walking out, it was the nurse who told us the more common name. And that is when I remember first feeling scared. I knew about Spina Bifida. I knew that there is a wide range of abilities and challenges in the SB community. I didn’t know where our son would fall in the spectrum. I hate the unknown.

Jeremiah was born on April 19, 2010. I delivered by C-section, and got to see him for a few precious minutes before they took him through underground tunnels to a connecting Children’s hospital. My husband Chris went with him, and I stayed with my parents in recovery at my hospital. Jeremiah had his initial surgery to close his back just hours after he was born. About six hours after he was born, Chris rolled me in a wheelchair through the tunnels so that I could see Jeremiah. We did that every three hours for three days so that I could feed him and spend time with him. It was such a relief for me to be released from the hospital.

Jeremiah was born in the pike position, with his legs up by his head and his knees hyper extended. He could not lower his legs, and I was concerned that he would not be able to even sit in a wheelchair. Through a series of casts, they were able to lower his legs and bend his knees, and also help to correct some clubbing in his feet.

 Jeremiah has a shunt and has had one shunt revision. He is very healthy! He just tested out of occupational therapy, and he is progressing in physical therapy. He is now 18 months old and he has just started to take some steps. He has done more than I ever thought possible!

When he was first born I remember wondering if I would ever stop equating Jeremiah with Spina Bifida. What I mean is, every time I thought about Jeremiah, I remembered that he had Spina Bifida. I am happy to say that now, Spina Bifida no longer defines him, at least in my mind. He is so much more than SB! He is funny; he’s a tease; he’s a momma’s boy; he’s ornery; he’s a fighter. He loves to pray in sign language and pat the Bible. He loves being outside. He loves to throw rocks and get dirty. He’s just a kid. I can’t imagine our family without him! 
Thank you Hannah for sharing Jeremiah with us!!

Saturday, October 29, 2011

Give Thanks Calendar!!

Have you seen this AWESOME calendar???

I think that it is SO GREAT that I just have to sing it's praises to you!

The Give Thanks Advent Calendar is a GREAT tool to use in your family, with a class or group, or even with a study group. The way that we have used this in our family is each day at dinner time we go around and say what we are thankful for that day. We wrote down our answers on a small card and placed the card in the pocket of the calendar. At the end of the month I complied all of the cards and put copies in each child’s scrapbook, that way years later they can see what they were thankful for! I have also put prayer points in the pockets, and each day we have prayed for the points on cards. Another thought I had, but have yet to do, is to put acts of service on cards in each day and teach my kids how great doing an act of service can be! As you can see there are TONS of great uses for this wonderful hanging.

*This IDEA is not my own, I have seen many of these, but this kit is my own personal spin on it, and my way of letting you make this project YOUR OWN!*

Since we enjoy our calendar so much and I think it is such a GREAT teaching tool with kids, I have put together some for my Etsy shop! There are two ways that you can make this yours RIGHT NOW, just in time for this years Thanksgiving season (although we use ours all year long at various times!)

The first way that you can make this yours is to but a KIT that has everything you will need in it to create this with YOUR family!

Kits are READY TO GO and can ship out TODAY Priority, so you would have it JUST in time for this year! If you would like to purchase a kit, go HERE!

Each kit includes:
~A background piece that is 24 x 34, with a 1.5 inch rod pocket already stitched across the top.
~30 pre-cut pockets, and one rectangle for the title area.
~Pre-cut letters (give, THANKS) and numbers (1-30) in the colors shown in the pictures. (The numbers and the word give are on self-stick felt, the word THANKS is not)
~the “treasures” shown in the second picture (or VERY close to those exact treasures, no kit has less, some have slightly different items than pictured)
~detailed instructions on how to complete your calendar

What you will need to provide:
~Glue (I suggest E2000 or FabriTack)
~I dowel or ribbon to hang the finished hanging
*OPTIONAL: each calendar CAN be made with just glue, OR you can sew the pockets on like I did. I like sewn pockets for longevity to use it year after year, but this project CAN be completed as a no sew project if you like.

 The second way that you can make this yours is buy purchasing a pre assembled wall hanging! I have do all the work and you just have to ENJOY your calendar!!!

The soonest I can ship out the pre assembled wall hangings is MONDAY, but I will still ship them Priority so you should have them very quickly! And you will be able to hang it right up and start using it NOW! If you would like to order a pre assembled wall hanging Give Thanks Calendar go HERE!

*As always, if you are local and want to pick up instead of paying shipping, please convo me to arrange it!*

AND I will have a booth at OctoberFest here in Los Osos TOMORROW, and these will be with me there too! Hurry quick, before this year's kits sell out!!

Spina Bifida Awareness: Meet Magan!

Today we hear from a wonderful lady named, Magan!

I would love to say that this is happy and uplifting, but it isn't. Sorry. :+) But it does have a happy ending!

This is my story...

I was born in 1973. Back then, they were just beginning to have the technology to be able to save the lives of babies with Spina Bifida/hydrocephalus and give them half a chance of a "normal" life. My father had been in Vietnam when I was conceived and a correlation between Agent Orange (which my father had been exposed to during his time in the Navy, as well as asbestos) and Spina Bifida was later discovered. I was well into my twenties by that point and had had a fairly difficult life. The doctors told my mom not to expect anything from me--that my life wouldn't amount to anything productive or useful. My mom, being a stubborn, feisty, independent woman, raised me to be a fighter, but all who know me said that I came out of the womb swinging! There's even a joke in my family that says when my doctor spanked me, I turned around and smacked him back! Haha!

I never had a relationship with my father, who later told me, to my face, that I wasn't wanted as part of his life. His loss, I think. :+) But then, after my parents divorce, my mom and I moved to California, where a whole new world opened up for me. We spent a year in Santa Barbara, where I began to learn independence, then we moved to Northern California, where I was abused by someone who was supposed to 'love' me. Thankfully (?), the majority of that year, I spent in Shriner's Hospital in San Francisco, having rods placed in my back and my legs straightened. It was a good year! Haha. I learned independence quickly and learned how to rely on myself, and not others. After my release, we moved back north, until we moved back to Santa Barbara, where we would live until I was sixteen.

School was less than stellar. I was never a good student. I was bright, but unmotivated. I wanted to be anywhere but in school. And I was wildly creative, and imaginative. I am a writer by nature, so I was always getting in trouble for 'having my head in the clouds,' Haha! I had a lot of good people who surrounded my mom and I, but who didn't completely understand me. I know they often felt frustrated for my mom, because I was such a difficult and stubborn kid. When I was eleven, I descended into five years of hell, known as my teenage years. I was angry, I was stubborn, I was difficult and I didn't know how to harness it (yet). I was also being sexually abused and didn't know how to tell anyone, including my psychoanalyst. I told a story to a few people at school and it was me trying to tell them that I had been abused, but nobody knew to take it that way and I got into a lot of trouble, because no one could read between the lines of what I was saying. Nobody.

I had my first severe shunt failure when I was twelve. I almost died. Yeah, that was fun! Haha! But my mom sought out a great doctor for me, who saved my life and gave me a chance to see things through a different lens. But I was still angry and would be for many years to come. Anger was always my lifeblood, until I discovered love.

I also did not believe that God existed. I had had a dream when I was nine that was the worst nightmare I ever had. I still remember it to this day: God was killed by venomous spiders and snakes, leaving me alone in the world. Even though I was raised by a good Christian mom and surrounded by a good Christian family, I was still alone, I felt. During this time, I met a woman who started out as my social facilitator, who quickly became one of the best friends and advocates I'd ever have. Her name is Rena and I owe a lot of who I am today, to her. She is a psychologist and began my journey into becoming myself. She accepted and loved me on 'my' terms. She also introduced me into competitive sports. I was able to harness a lot of my pain and anger through competitive wheelchair sports. I was so good at competition, especially racing, that I made it all the way to the California Wheelchair Games. I came in second, due to a technical difficulty.

When I was sixteen, my mom and I moved back to Michigan. I was in tenth grade by that time and I didn't want to move back. But, when you're sixteen, not emancipated and disabled, you have few choices. So I moved back and settled into an even angrier me. I quickly gained a reputation as "someone you don't want to mess with," that still sticks, even though I am not nearly as angry as I was then. And my relationship with my father came full circle also, as I tried desperately to have a relationship with him, only to be treated as unwanted. Finally, I stopped caring.

When I was in my early twenties, I met a man named Gary, who changed me. He was the cousin of a friend and we were close. He taught me that I was beautiful, inside and out, and taught me how to let go of that anger, in so many ways. He taught me that I was beautiful, even if I didn't feel it. And I never did, until I met my husband, in 1999. My husband and I knew at our first meeting that it was destiny and nine years later, we were married. The reason? I needed to know that when my body failed me, he wasn't going to. And he hasn't failed me. He's my best friend and the joke was on me, because, with my incontinent issues, I didn't think he was going to be able to stick around. The joke? My husband was a direct care worker, who worked with a man with a colostomy bag! Haha!

That was twelve years ago. I would love to say that aging with Spina Bifida has been easy, but it hasn't. I've had more brain surgeries over the past ten years than I have had in my entire life. Frustrating, but comes with the territory. But I am no longer angry about my life and no longer want to be 'like everyone else.' I am proud of who I am and I've come a long, long way. I like my life and I like the tough cookie I've become. I am now a published writer, with two short stories under my belt. I own my own crochet company, The Mad Crocheter, and I am a psychology student, well on my way towards obtaining my Master's degree. Without all the complications, I would never be where I am today.
Magan Rodriguez
Thank you for sharing your story with us, Magan!!

Friday, October 28, 2011

Spina Bifida Awareness: Meet Gavin!

Today we meet Gavin, through the eyes of his parents!

Family picture after signing adoption papers
Meet our son, Gavin who will be four in December.  Gavin is the light of our lives; he is amazing, wonderful, and smart.
Gavin's back before his surgery
Gavin didn’t come to be a part of our lives in the way a typical child comes to be a part of a family.  Gavin came to us a foster child when he was eight months old.  We took him in to our home knowing absolutely nothing about Spina Bifida, but that didn’t matter because we feel in love with him right away.   By the time Gavin was one and a half we had officially adopted him. 

In court, signing adoption papers
  When Gavin came to us at eight months old he couldn’t do anything.  He couldn’t sit-up, crawl, or roll over.  We had a long road ahead of us, but Gavin was a go getter and didn’t let anything stop him.  Our early intervention program came to our house and worked with him weekly to get him caught up.  Over the next few months he slowly but surely stated crawling, standing, and doing things I was sure would never happen. 

Shortly after Gavin turned two he began walking with his ankle braces.  Thought he wouldn’t walk without a walker but he just up and started walking without any walker.  Now he runs and has just mastered jumping straight up from a standing position.  This summer he also mastered walking up and down our front steps without holding on to anything and figured out how to pedal his three wheeled bike.

This is how he walked when he first got his braces

We could not love Gavin more if he had been born to us.  He is amazing and loves life, having Spina Bifida does not slow him down.  He lives a normal, happy healthy life.  Thanks for being a part of our family, Gavin, we love you.

Picking pumpkins at the Pumpkin Patch, this is one of Gavin’s favorite things to do

Thank you for sharing Gavin's story with us here!

Thursday, October 27, 2011

Spina Bifida Awareness: Meet Alex!

Today we have a story about a cute little fella named, Alex! Here is what his mother, Holli had to say about him:

I've been reading along with the inspiring stories every day and have been meaning to write one about one of the most important people in my life, my son.

Alex is two and a half years old. He and his twin brother are the light of my life!!! They had a difficult start in this world and Alex more so. We learned during our pregnancy that Alex's spine didn't form correctly and that he had Spina Bifida. I worried so much about what his life would be like, having a disability. Then just a couple weeks later we found out that the boys growth had slowed way down and that my placenta wasn't functioning well causing blood flow problems. We had multiple ultrasounds and stress tests per week and we were told to be prepared to lose both of the boys; That certainly put Spina Bifida in perspective. We gained strength then that we could deal with whatever came our way as long as we had our boys at the end of this journey.

They were born 12 weeks early. Alex was just one pound 10 ounces. The first several months of his life were spent in the Neonatal Intensive care unit hooked up to every piece of machine imaginable. He battled surgeries, infections, and finally to breathe and eat on his own. He showed his true colors right from the beginning, he might have been little but he was a fighter! He didn't just amaze us, but also many of the seasoned nurses and doctors who were initially very pessimistic about his future.

If you meet Alex now two and a half years later, he is no less inspiring. He has a very "thoughtful take it all in" persona when meeting any one new. But it doesn't take long before he's batting his eyes and throwing on the charm.

I feel like Alex is the one who teaches ME every day instead of the other way around. I used to worry so much about whether he would be able to walk one day or not. Somehow I felt that that ONE detail would make or break his happiness. I dreaded the "equipment" coming when he was no longer a baby. At just a year and a half old he got his first wheel chair and his world broke wide open. The very thing I wanted to resist was exactly what gave him his wings. From the very first minute of being in his "wheels" it was clear this gave him freedom. He was free to move wherever he wanted, exploring right alongside his brother, often surpassing him even. He reminds us every day what is important in this life, and what is not. Spina Bifida is a part of Alex's story but its certainly not the whole story!

Their personal blog is:
Thank you Holli for sharing mister Alex with us!!

Wednesday, October 26, 2011

Spina Bifida Awareness: A Special Big Sisiter

Today we get to meet a SPECIAL young woman that is a dear friend's daughter.... words can't describe this darling girl, but April, her mom, comes close! Kaia is big sister to Blake, who has Spina Bifida.

Originally posted on the family blog on 10.30.2008

Kaia is our Gift!
I always worry that Kaia, as the big sister of a special {needs} little boy, will end up feeling slighted when she is older. We have tried really hard to do one-on-one special things with her to help her feel like it is not all about Blake. And, we don't make a practice of using Blake's diagnosis or problems as an excuse for not doing something as a family. {Occasionally we have to, but I see that as a great teaching lesson on compassion and empathy when the situation arises, which I believe all of our children need to learn more of.}

I knew Kaia was always hearing us refer to Blake as our little miracle from God and worried that she wouldn't think she was as important. So as to help Kaia feel that she is just as special to us, I thought long and hard for a sincere sentiment I could use when referring to Kaia. I came up with....'She is our gift from God'. Here's one example why I feel so strongly and sincere about this sentiment.....

Sitting on a bed in a Disneyland hotel, I was cathing our little one year old, Blake. Kaia's birthday was approaching and she was watching me. She said, "I know what I want for my 7th birthday present!" Being at Disneyland, I couldn't even begin to imagine what she had seen that she would want, so without guessing, I simply said, "What gift would that be?" And here was her sweet little 7 year old birthday request....."I want to learn how to cath Blake so that you and Daddy can go to both a dinner and movie without having to come home in between to catheterize Blake." Tears welled up in my eyes and I took her little cheeks in my hands and said, "YOU ARE OUR GIFT FROM GOD."

She learned how to cath Blake that year and has continued to be a big help when in need! She is indeed OUR GIFT FROM GOD and we thank him everyday for both of our blessings

Read more:

And another post from 4.22.2009
She really is an amazing kid. And a great big sister.
She and Blake had a fabulous time this past weekend. They had so much freedom on her dirt bike. Freedom that once she shared some of the places they went on her dirt bike, made me a little nervous. I am way too cautious of a person at times. They explored ALL of camp. No terrain was too tough for her with a rider on the back, but at the same time she showed extreme care with her little brother on the back.
Kaia has a special way when dealing with Blake. Dave and I can ask, beg and plead with Blake for him to cooperate or change his attitude about going somewhere or doing something. When we are at our wits end, Kaia will usually say, "Mom, Dad, can I try?" Blake and Kaia go down to a bedroom and Blake and Kaia re-emerge happy and willing to participate. I'm not quite sure what she says to him, but she can pretty much talk him into anything. Even out of a bad whiny mood. There are many days I thank my Heavenly Father for sending us Kaia first as a special protector over her little brother. She definitely is part of the plan of keeping our family sane while raising a child with special needs.
And one more thing about Kaia.......she can drive this red mule like nobody's business. She was itchin' to get her hands on the steering wheel and she figured it out quickly. Dave said while she was giving us all a ride, "You know farm kids are better drivers because they have so much experience at the wheel at an earlier age!" Well Kaia, I have no doubt you are going to be an excellent driver. You are a good kid! And we are lucky to have the privilege to raise you!
Read more:

Thanks April for sharing Kaia with us today!!!
What a great big sister she is to your special little man!!

Tuesday, October 25, 2011

Spina Bifida Awareness: A Note from Misty

Today's face of Spina Bifida comes from a grown woman who has Spina Bifida. When I saw this I just BAWLED. I pray that I am a strong enough mom, who knows just the right balance of tough love and unconditional love, that SOME DAY my precious son might have just as kind of words for me! This is a picture of the mom all of us SB mom's strive to be! Thank you Misty for sharing your mom, and your fabulous words to her, with us!

Dear Mom,

Thank you for giving me life when “they” said I’d be better off dead.

Thank you for fighting on my behalf when I was too little and weak.

 Thank you for loving me even though you were scared.

Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been in...timidating.

 Thank you for learning what all those tubes were for, and where they went, and how they helped me.

Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go.

Thank you for walking up and down the halls of the hospital with me while people gawked.

Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once.

Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t.

Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk.

Thank you for being patient when other kids my age were running circles around me. I needed more time.

Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn.

Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn).

Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude.

Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart.

Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun!

Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved.

Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed.

Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen.

And thank you for forks! LOL! Only my mother will get that one!

Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!


Your SB kid

This letter was originally write by Misty to her mom as a tribute to her for Mother's Day and posted on Misty's blog. Thank you Misty for allowing us to re post it!

Please visit Misty over at HER BLOG, she is a very insightful woman and I love reading her words!

Monday, October 24, 2011

Spina Bifida Awareness: Meet Michelle!

Today we get to meet a woman who is almost my age (Gretchen's) and who has Spina Bifida! That the Internet and places like Facebook put me in contact with people like Michelle is a HUGE blessing in my life!

Meet Michelle!!

I was born in 1971 - the early days of Spina Bifida. I was born with Myelomeningocele (L4/L5) and hydrocephalus. Not long before I was born, most babies with SB died due to either infection caused by their spinal cord not being surgically closed after birth or hydrocephalus. I was truly born at the right time! Another thing that worked in my favor was being born in Chicago and Children's Memorial Hospital in Chicago was pretty much the birthplace for the treatment of babies born with SB. In fact, the Spina Bifida Association of America started off in Chicago with just a few parents. Amazing what a grassroots effort can turn into.

I had about 30 surgeries by the time I was 10 years old. Thankfully, the majority of those were done before age 6 so I don't remember much. Even though I had many surgeries and physical issues growing up, I feel I had a pretty typical childhood. I went to a regular school and attended regular (mainstreamed) classes, had lots of friends, went to summer camp, played with my sisters, fought with my sisters, loved playing with my dolls, and loved to swim. I also went on many trips with my family - California, Mexico, Florida, Ireland. My parents did their best to not let my having Spina Bifida keep me down - even with my leg braces and crutches.

As I grew up, I always knew I would be independent and live on my own. My parents told me so as I grew up, so I had no other frame of thought. I got my first job at 16 being an annoying telemarketer, learned how to drive at 18 and moved out when I was 25. I decided to move to Florida with a friend from high school and so I quit the job I had the time (working in a law firm) and packed up my car and drove down here in January 1997. I have been here ever since! There really is no comparison to the weather from Florida to Chicago. Florida wins hands down!! Moving down here was the hardest thing I have ever had to do. It wasn't (and isn't) always easy, but so worth it. I wouldn't change my decision to move out for anything. I still go back home for Christmas and usually in the summer and my family comes visit me. It's a nice arrangement!

My most recent job I had was at a small family-owned company that made and installed counter tops. I was their production coordinator. Unfortunately, I developed a severe pressure wound 4 years ago that required many lengthy hospital stays, so I had to resign and go on Disability. My 20 year work history worked in my favor though, as I make much more than people who are on Disability and have never worked. My wound is finally healed and I'm hoping to be back working in 2012. I miss working and making my own money!

Life with spina bifida can be difficult at times, but every life is presented with challenges and hardships. Mine just happen to be physical. As strange as it may sound, I am grateful for that. There are many more wonderful things about my life than negative things. I try to remind myself of that fact everyday.

Thank you Michelle for sharing your life with us!

Sunday, October 23, 2011

The roller coaster we are on....

Things have been really off around here for a while. And I haven't given any updates. It's not that I don't want to share what is going on. But rather that I don't want to rain on the SB Awareness parade with my personal struggles right now. On the other hand, I have vowed to be real, authentic and transparent here in all things... So I am going to share what is going on around here!

I am having a few "I HATE Spina Bifida" moments recently.

I don't think ANY mother like to see her child suffer. And I just happen to be able to blame SB for my son's suffering recently.

So... let's bring you all up to speed on what is going on around here.

Two weeks ago tomorrow, Nat went in for a routine dental procedure that he had to go under anesthesia for. He had an allergic reaction to the anesthesia, and went into full respiratory failure when they pulled the breathing tube out. He basically stopped breathing, and then his heart faltered greatly. He flat lined for a few seconds while they reintibated him (he was laying in my arms when all of this happened so I had a very clear view of all that was going on! Heart wrenching!) We ended up in the hospital for the night. He was vomiting blood, not breathing right, had low H2O saturation, and his heart rate was abnormally high.

The next day he seemed fairly stable so they released him to go home. His heart rate was still elevated, but they said that could take a few weeks to stabilize out, and his H2O saturation was still slightly down, but not in a dangerous zone. But he has not been quiet himself since then. He has had a bunch of problems, that all taken alone seem normal for him, but all added up are just wrong.

His current problems include:

~He has been having unexplained headaches pretty much non stop for two weeks. Some of them bordering on the migraine side with him vomiting and seeing lights (he does normally have 2-3 migraines per month).

~He has been battling a UTI, even though he was on a 10 day course of antibiotics to treat it. He also seems to have an irritated urethra due to a little "stubborn streak" he had the week before the procedure. We have had to adjust his cathing protocol to help with this. He finished his antibiotics, yet still seems to have the borderline UTI (for SB folks... he will be crystal clear one time, chunky milk the next 2 or 3 times, then clear again for like 24 hours. This seems to be happening at least once a day).

~ His kidneys are not functioning properly. And are giving him a hard time.

~His right ankle (the one prone to staph and ostio) is swollen, hot and VERY PAINFUL. The painful is concerning everyone because he usually has little to no feeling in this foot. This COULD be due to a change in his braces, but with everything else going on we don't want to completely write it off to that. We are watching this foot closely due to previous history.

~He is still not breathing properly and easily looses his breath or gets winded. This is NOT AT ALL normal for my energetic guy that can run for hours on end.

~Now on top of everything, he is not eating or drinking right for me. That is messing with his bowel management system that we have him on, and I personally think he is bordering on dehydration. Yet I am so hesitant to do a clean out on him with him already down and out. So hard to know what is the right call in the SB world!

Nat's doctor, when looking at all of these things together, feels like the medication that caused him so much trouble in the hospital is still in his system and causing havoc with him. Systems that are normal "weak spots" for Nat (that right foot, his urinary tract, his migraines) are all failing due to the stress on his system. The breathing and lung issues, his Dr feels are directly related to the respiratory failure when the intibation tube was pulled, then reintibabting him so quickly. Dr is hesitant to introduce any new medications at this time, he is unsure how Nat's system will react. So right now Nat is on full bed rest, in his wheelchair, and we are TRYING to convince him to eat and drink.

Needless to say... I have had a rough two weeks, and watching my boy so sick and being able to do so little is TOUGH!

Right now we are hoping and praying that rest and down time will help his body find center again and then get stronger, so in time he should be back to his normal self. But only time will tell.

Prayer is truly the only place of peace I have had in the past two weeks! I have spent an enormous amount of times on my knees! If you are a praying person, we would LOVE your prayer in healing Nat's body.

So, while I LOVE my son, and I am thankful beyond words he is in my life, Spina Bifida and all, I am SICK of the havoc right now. Now I KNOW there are those with SB FAR WORSE off than us, yet I also know that there are those with SB that have it way easier than us too. SB is a big ole spectrum and you can fall anywhere on it at any given time. We are on the hard swing right now, and I am personally DRAINED from it. But I have faith that we will find center again and carry on. I just hope center comes soon....

So that is what is happening in our corner of the world... what is going on in yours???
(Come on, leave a comment, I REALLY DO want to know what is going on with my friends since I have NOT had blog reading time recently!)

Spina Bifida Awareness: Meet Aiden!

Today we get to meet Aiden!
His mommy is sharing with us:

Here is Aiden’s story (he is my 3 month old son)….

Our beautiful journey with our son, Aiden, who was born with Spina Bifida, began with a 3D/4D ultrasound.

We have two other children(Ashleigh and Andrew), ages 4 and 14 months at the time, and this would be the only way they would have the opportunity to accompany us to an ultrasound to find out our babies gender. I was 15 weeks pregnant at the time and went in hopes of knowing our babies gender. Within minutes of starting the ultrasound I knew something was terribly wrong with our baby, you could see it all over the sonographer's face-she was mostly focusing on our babies head and heart. She asked our mothers to take our children out of the room and informed us that our unborn son (yep, we were able to see he was a PROUD boy!) had serious medical problems that included his head and heart.

We were terrified.

 Of course she was not allowed to tell us what was wrong but I left there that day just praying it was something my son could survive.

The next day we had an appointment with Maternal Fetal Medicine and were quickly informed that our son had Spina Bifida and a heart defect. My first question was (since I was not familiar with SB) “Will he survive?” There answer was “in regards to Spina Bifida, of course he will!” but he was still too little to know about his little broken heart.

I was never in shock or upset by his diagnosis of Spina Bifida. I suppose it was partially because the day before I thought my son might die and because we were so unsure about his heart. A few weeks later he had a fetal echo and was diagnosed with a serious heart defect called Tetralogy of Fallot and would need open heart surgery soon after birth. We began our almost weekly appointments and debates on what steps needed to be taken after birth. It was decided that the myelo repair needed to happen first.

After they realized he had multiple birth anomalies we had an amniocentesis to check for chromosomal abnormalities and they came back positive for 22q deletion syndrome (also known as DiGeorge’s Syndrome). 22q has a wide range of symptoms (SB is a rare one) and affects health and learning/social as well. I felt like everything was spiraling out of control and feared what was next. More diagnosis came throughout the pregnancy: solitary kidney, hydrocephalus, suspected cleft pallet(although he does not have that).

 We were so nervous about delivery day although it was a miracle in itself that I made it full term with him as I developed polyhydramnios around 7 months of pregnancy with him. But we made it and although the doctors feared he would be on a ventilator immediately after birth and require immediate attention to his heart, Aiden proved them wrong! He came out kicking, screaming, and perfectly pink!

 He spent the first two days of life breathing room air (praise God!!!) and had his myelo repair at 2 days old. He sailed through that with flying colors and started eating by mouth the next day. Oh yeah, did I mention the doctors told us during the pregnancy not to expect our son to eat by mouth ;)

 At one week old his neurologist decided it was time for a shunt due to hydrocephalus so at 7 days old he went in to surgery for a VP shunt. He was a little ornery recovering from this surgery but within a few days was eating mostly by mouth (because of his heart condition he would wear out easily and would gavage the rest of his feeds) and healing nicely!

 Aiden, our big sweet boy, was able to grow strong until 6 weeks old until he required open heart surgery. So on August 26, 2011 we sent our son into open heart surgery scared out of our minds. After six long hours he was sent to recovery doing pretty well. He spent another 3 weeks recovering from OHS and we were finally able to bring our sweet little guy home after 9 weeks in NICU/CICU! What an incredible day that was!

He has now been home for a month  and continues to amaze us each day. His strength and determination is incredible. We praise God that he not only eats by mouth since he’s been home but he BREASTFEEDS!!! He no longer requires oxygen, only came home with an apnea monitor and does all of the fun baby things we would expect him to do: eat, sleep, and poop!

We don’t ever look at him as Aiden 22q, Spina Bifida, Hydrocephalus, Tetralogy of Fallot as the doctors see him…he’s just Aiden-cute, cuddly, amazingly perfect gift from God! We are so blessed with our sweet little boy and although I would never wish for my son to be in any pain or face obstacles in this life, I would also be glad to walk this journey a million times over because my heart swells with love and happiness every time I look at his sweet face!

Thanking God every day for our sweet blessings!

Thank you Kayla for sharing your precious boy with us!

Saturday, October 22, 2011

Fall is GREAT!

Taking Fall pictures is one of my favorite things to do!
The colors are fabulous, there are pretty things everywhere and it is FUN!

Last weekend some of the ladies from our women's group at church met up at Avila Valley Barn for a picnic... 

so the kids and I joined them!

First we peeked around the cute store there.

Then we had a nice picnic.
Audrey DROOLED over the roasted corn sold there.

Then we went on a Hay Ride.

And we wandered around in the pumpkin field.

Audrey was on a quest for the PERFECT pumpkin!

I even let Audrey take pictures. This is her portrait of Miss Brandie (the Children's Director at our church) and her beautiful girls.

When we got back to the main area, I TRIED to get some fun pictures of my kids....
But they weren't cooperating very well!

I called this the best I could get and we headed on home!

I think we are going to have to visit another pumpkin patch soon so I can take more pictures!!