Monday, March 12, 2012

Kumaka :: Child with Spina Bifida

We found out that our precious son would have Spina Bifida at 19 weeks. We went to that ultrasound to find out the gender of our baby, and we got a whole lot more than we bargained for. We were told our "options" multiple times, until we were more sick about the word termination than the diagnosis. We struggled with finding the understanding of the enormity of what we would be facing. It was so overwhelming. But once he was born, he was perfect in our eyes. He's had quite a few challenges and hurdles to jump over. He's had multiple surgeries, mostly on his feet which are proving to be quite difficult to correct. He is a full time crazy wheelchair boy, but is learning to walk with RGO's. At the moment he is in a spica cast because both of his hips were out of socket and he had bilateral hip surgery to fix that. He's had heel cord lengthening multiple times, as well as a couple of bony procedures on his feet. He has battled pneumonia, and multiple UTI's.

But his sweet spirit, his courageous attitude makes him a warrior. He does not really think he's different. He's five right now and has only once mentioned the fact that he can't walk. He has four brothers who shower attention on him, and he really is a part of the crew. Their friends adore him....and love him and play with him. He is so very awesome.....he amazes me every single day.

He is a huge blessing in our lives and we wouldn't change a thing about him. Our only wish is that he didn't have to go through quite so much...but really that is what makes Kumaka who he is. His full name is Kumakalehua...which is Hawaiian. It means "the Strength or Foundation of the home". He is that for us. We love him more than anything.

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Friday, March 9, 2012

Kelsey :: Child with Spina Bifida

I remember it like it was yesterday... The doctor walked in to the examination room and blurted out, your child has Hydrocephalus and possible Spina Bifida. These are three words I had never heard before, and three words I would never forget. I had no idea that they would become part of my daily vocubulary, along with phrases like, neurogenic bladder, VP shunt, kyphosis, and so many other medical terms. That day was in February 1993.

Fast forward nearly 19 years later. Many other words have entered my vocabulary... Wonderful and loving daughter, hard-working student, wheelchair athlete, caregiver to a sweet service dog named Emelia.

Reflecting on the last 19 years of my life, my daughter, Kelsey, has brought me joy beyond measure. While I didn't have the same experiences as I did with my other child, it didn't diminish the excitement of seeing her walk for the first time using a walker, playing her first wheelchair basketball game, winning her first wheelchair racing medal, and becoming a National Powerlifting Champion. Who knew that on that cold February day in 1993, I would ever have been where I am now?

As my daughter prepares for college, we both reflect on her struggles with school, learning self-care, laughing at mishaps while traveling, and all the wonderful experiences she has had, and is yet to have.

I worry about her as she goes off on her own; will people take advantage of her situation, will her mild learning disabilities get in the way of her career aspirations, will she find love? Whatever life throws at her, I know that she will always have the support of her family and friends, and she will succeed, in her own way.

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Wednesday, March 7, 2012

Charlotte :: Child with Spina Bifida

Charlotte Adara was born April 19th 2010 at the University of California San Francisco. We were part of the MOMS Program. Our before story is quite eventful so I think I'll share that before I get to the reason for this post.

We found out Charlotte was a girl on December 28th. The ultrasound tech found something wrong but didn't tell us. They told Matthew and I that they needed to send me to a specialist because they didn't get enough measurements. I had no idea so I went to this appointment by myself. I should have figured something was up when the office they sent me to had to do with genetics and birth defects.... but nothing. Then they did the ultrasound and said there is something wrong with your babies back. And her head has what we call the Lemon sign. They said she has Spina Bifida which I had no idea what it was or what that meant. The doctor was very gracious and explained a few things. She said I had some options. First of all Termination which I said no way. Just to go as is and deliver and go from there or that there is a study being done for this where they go in and close the babies back before they are born. Anyway so much info and I was in shock. They called Matthew on his last day of work as we were planning on moving to VA the next week. He came down cause the doctor didn't think I should drive home in my state. I was definitely in shock. So she gave us some info and the number for the study. We then had like 5 days before Matthew left for VA and I was to move into my parents house while he looked for houses.

It was a stressful 5 days. Anyway Matthew left and I didn't know what I was going to do. But I did call the MOMS people and did the interview over the phone. I felt good about it and so Matthew asked his work if he could telecommute to do the evaluation. They said yes. We got to San Francisco on January 24th had the 2 days of evaluation on the 25 and 26th where we were bombarded with info. The MRI showed a really bad Chiari Malformation. That is what made the final YES in my mind to do the study. If that could be fixed I would do it. Those few minutes after we said yes were crazy waiting to know if we were going to stay for the next 3 months or be going back to VA and AZ. But we ended up staying. Matthew called his work and said he'd be telecommuting for the next 3 months. And they were good with that. What a blessing. We had the 27th all do ourselves and then on the 28th I was at the hospital having surgery. I think I was in the hospital till the 31st. I wanted to get out of there! I hate hospital beds. Anyway we set up camp at the Family House. We enjoyed our time there. We ate at some awesome places. Met some amazing kids at the family house. We were there with another couple that were part of the trial but got chosen for the surgery after. Then I was still there. and Nicole Dyer came. She had her surgery and then I went in to have Charlotte 3 days earlier then planned. WE had my c-section scheduled for April 22 but at my regular visit on the 19th at the Antenatal testing they saw I was contracting regularly and sent me on my way to the hospital. We then had Charlotte that afternoon. She was amazing! Beautiful! She came to earth at 6 lbs 13 ozs at 20 inches long. She was in the Nicu for a week. I think that was only cause we could leave without the VCUG and they only do those on the day she was born. So we had to wait a week to leave.

The Neuro said that if Charlotte wasn't part of the trial that he would have put a shunt in her before we left but wanted to give us the benefit of the doubt to see if she would stabilize. But that wasn't in our cards. We saw the Neuro back in AZ several times and then got the shunt put in May 14. That was a difficult surgery to get through. She looked horrible coming out of surgery. But It saved her life. We got a VP Programmable Shunt. Adult sized. So that hopefully she won't need a new one...

That has been the only surgery for Charlotte She had great leg movement when she was born. All the doctors that saw her were amazed. Her scar on her back looks more like a birthmark then a hole that was fixed. She walks with her walker and does really well just walking holding onto my hand. We just got for arm crutches for her to try out. So far she's not a fan. I'm not sure she'll need them but they are there if she decides they are better then her walker.

Her level is L4-S2. She's got movement all over. She's got KAFOs to stabilize her ankles. We Cath her 4 times a day and she's on Ditropan. At our 12 month evaluation at CHOP they found a Cyst on her upper thoracic spine that we are now watching with MRI. So far so good. Charlotte will be 2 in April. We can't wait to go back to San Fran for the 30 month visit. I just spoke with Rachel there at UCSF and they will accommodate us coming over the holidays and fly us from VA to CA back to AZ to visit my family! Awesome!

Charlotte amazes us everyday. She's so sweet. She's my cuddle bug. She LOVES BABIES! which I'm thankful for as we're getting ready for another one soon. Charlotte doesn't like crawling down the stairs anymore because she wants to walk down them. Scary I know but she won't do it without me. Soon she'll be able to do it herself. She has Physical Therapy twice a month and Developmental Therapy once a month.

I Love my sweet Charlotte. I can't believe anyone would consider ending such a wonderful spirit just cause it will be HARD.

Check Out Our Family Blog at TEAMWEIR.BLOGSPOT.COM

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Monday, March 5, 2012

Chase :: Child with Spina Bifida

We were told at 22 weeks, after a level 2 ultrasound and an MRI, that our son had Cerebellar Hypoplasia. We were devastated since we were told that having this was rare and that we wouldn’t know the outcome until after he was born.
On October 17th, my OB decided that due to low growth they would prefer to induce and on October 19, 2011 my son Chase was born. My son was born with a Myelomeningocele which explained the hypoplasia. The Myelomeningocele was causing a Chairi II malformation.

Chase had his defect closed on October 20th. He then had an EVD drain placed on October 25th. On November 1st he had his programmable vp shunt placed. He was in and out of the hospital after that for wound issues and shunt issues. He had his first shunt revision January 4th of this year.

He has been doing well so far. His neurosurgeon has turned the pressure down in his shunt from .5 to 1.0 to 1.5 just yesterday. His neurosurgeon is also pleased with the movement of his toes feet and legs; he is pretty ticklish! He has also been hitting his milestones so far. We may be naive, but we think he will show Spina Bifida who’s boss!

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Friday, March 2, 2012

Caleb :: Child with Spina Bifida

In the summer of 2004, Glenn and I decided it was time to start a family. I had actually been ready for a baby for some time but Glenn wasn't quite there yet. I was thrilled when he said he was finally ready and I immediately made a doctor's appointment, got off the pill, and started taking prenatals. I was ready!

In December of 2004 I got pregnant! I remember seeing that faint pink line while standing in my bathroom and I just cried and cried. Absolute joy. I took 3 more pregnancy tests just to be sure! There was no doubt, I was pregnant.

Somewhere around 15 weeks, I went to the doctor to have blood work done. I didn't think anything of it, it never occurred to me that something could be wrong. The blood work came back "concerning" so I was sent to a perinatologist for further testing. I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read aloud to us. It was such a blur, like everything was happening in slow motion. The doctor did an ultrasound and showed us the opening in Caleb's spine and how the ventricles in his head were enlarged. He told us that our son would likely have significant cognitive delays, would not walk, have no quality of life and might not even survive. And in the next breath, he offered termination. We were offered termination several times and repeatedly told that we had to make the decision quickly because I was almost halfway through the pregnancy. Well, that was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I will never forget March 22, 2005. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months. Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could. Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him. I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Finally Home!

So that pretty much sums up the start of Caleb's journey. It is now a 6 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 6 years old and in Kindergarten. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair for longer distances because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to do crafts. He loves to read and he is really a fantastic reader. He loves to color and write and, for some reason, he is desperate to learn cursive (he has to wait until 3rd grade for that!) He plays baseball through the Miracle League and he absolutely loves it. He is a wonderful big brother to Benjamin.

You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I

be? Life won't always be easy for him, but life isn't always easy for any of us. This kid is leaving a mark on this world and the world is better for it.

Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.

Check out their blog at Blessings Beyond Measure

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