Blessings Beyond Measure

by Cassie from the blog Beyond Measure.


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 to us. We were told terrifying things about our baby boy and of course we were offered termination (several times actually). That was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. 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.

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

This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.

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.

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.

Caleb's sweet little head after shunt placement. 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.

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.

Caleb smiling, he smiled all the time. I know everyone says it is just gas but I like to think he was just a happy guy!

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.

Finally home!

So that pretty much sums up the start of Caleb's journey. It is now a 5 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 5 years old and he started Kindergarten this fall. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to color and write. He plays baseball through the Miracle League and he absolutely loves that. 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?



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.

Meet Isaiah

by Cristy of Random Thoughts

Thomas and I met in graduate school. Thomas had recently returned from a mission's trip to Siberia (yes, the really cold part of Russia; though it's actually quite warm in the summer time). He thought surely the greatest pick up line in the world was: "Hey, come with me to Siberia!" (just imagine this being said quite sarcastically)

We married December 27, 2003. Yes, my parents were thrilled with our marriage, even though it meant I, their only child, would eventually be living in Siberia. I do however, think that my mother would have preferred a different date, but the wedding was beautiful!

One year later

We visited Siberia together in February 2005, and we still believed God to be calling us to minister in Russia after our 3-week adventure.

At this point we both really wanted to have a baby, and in the summer of 2005 I found out I was indeed pregnant--great rejoicing! Other than being incredibly sick for a really long time, the pregnancy was fairly normal, I guess, until we discovered that Isaiah would be named Isaiah and not some girly name. On that day, which I recall being warm and sunny and maybe sometime in October, we also learned that Isaiah has spina bifida. There are many degrees of this birth defect, so for those of you medical buffs, his defect is between L2 and L3. His type is spina bifida manifesto, myelomeningocele in conjunction with hydrocephalus. And if you want more details, you can read here.

As you can imagine, our lives were a little uncertain at that point...NOT uncertain as to whether or not Isaiah should be born, that WAS NEVER a question! We believed then and still do now that Isaiah is our gift from God, and that God created him exactly the way that he should be. The way that our lives changed involved our calling to missions.

We weren't sure if we would be able to move to Siberia, since our child might have a disability.

Isaiah decided that he didn't want to wait for the day he was "supposed" to be born. He made his quite dramatic entrance on February 6, 2006. I won't go into all the details, but the day was difficult in many ways. After several hours I was finally able to see my precious boy, and loved him even more than I thought possible! After only 21 days in the hospital and 3 surgeries, we got to take him home.

Our first family photo

God did make it possible for us to move to Russia, though not Siberia. Isaiah has a shunt in his head to drain fluid that builds up. Should this shunt malfunction for any reason, he would need almost immediate attention to prevent any long-term damage. Unfortunately, such care is not available in Siberia, at least not that we have discovered at this point. So for now we are living in St. Petersburg as we learn this difficult language. For more about our ministry, please visit our website.



In the spring of 2009 God brought more opportunities of growth for our family. I had a miscarriage in March and again in May. We were of course devastated, but still believed that God would have us add to our family. I was able to have tests run to determine the possible causes of the miscarriages and now take medicine to help prevent any further harm to future children.

And, I suppose that I want to explain some of the pictures that you might see on my blog. Isaiah is a happy, wonderful, loving little man; but he does have some medical needs that most kids his age don't have. Isaiah cannot walk. He does an amazing "army crawl" all around the house (and in the sandbox when it's warm), that I could never manage. His defect effects his bladder and bowel; we are not sure how much feeling he has in these areas. We help him "potty" 4 times a day with a catheter and give him water enemas every other day. He's sitting on his own much better these days, even working with his hands some. During the summer/fall of 2009 we were in the States for 5 months. During that time Isaiah was able to have intensive physical, occupational and speech therapy. He was able to be fitted for full-leg braces and begin learning to walk with a walker! We praise God for this progress!

Also while we were in the States, God blessed us with our 4th child, who Lord willing, will be joining us in June 2010. We excitedly await the birth of Nadezhda "Nadia" Grace Slawson!

So those are the bare facts. If you would like to know more, please feel free to ask, anything. I'm used to explaining this all in Russian, now, so talking about it in English is a breeze!

Thanks for stopping by. I'd love to know who you are and visit your blog, too, if you have one. Please leave me a comment!

Meet Nathan

by Annissa of My Unique Flowers.
You can also meet her son, Noah, by reading his story here.


Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin. (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ... the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys. You can only hope for a happy "normal" life, but realize it may not be a reality. You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really. You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into. Marriage, isn't in the future... Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized...

But then I met HIM ... and my world changed. We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer. I had the chance to date him, without the kids getting involved. He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah. So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives. Dennis and Mommy were planning on getting married the following year. No one else really knew, but we had decided to haphazardly try for a baby together too. We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding. We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ... so September we were going to start trying and I was just waiting for the cycle for August to end. I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming. I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's. Finally, Jenna got on my case, and yelled at me to take a test. I had already taken one, it had been negative, but just to shut her up, I took one. As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

And the lines got darker!


I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result. A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals.

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart. Sure enough, there he was. I ended up having another one between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine. Then came the 12 week ultrasound and yet again, I was watching my due dates travel south. I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June. I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure. Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy!

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway! We still plan on having a big wedding someday, but we decided we needed to focus on our family. I was 18 weeks pregnant for our wedding...

The day after Christmas, we went in for our 20 week ultrasound. And just as we were ready to welcome in the New Year ... we got the phone call that would, yet again, change our lives.

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it." Oh GREAT. "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there. The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain." WHAT?? A CYST in his BRAIN?? OOOOMGosh what does that mean??? "It seems to be stable right now, we just need to keep an eye on it." She couldn't give me any other information, really. I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt. Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm. Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through. She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head. I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........ I was terrified. Something WAS wrong, because he wasn't growing. As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah. Only this time, I didn't find any. All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....) was stable and they'd keep a good eye on it. I was having ultrasounds every 2 weeks from then on. I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest.

It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable. But I was ordered the shots for the lungs, just incase. They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose.


But Junior and I hung on there ... and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck.


I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time.

Noah had been running a fever, he'd vomit a little, but the fever was so very bad. He was complaining about a pain in his right side, he was not himself. The fever was getting lower and going back up and dancing around. We took him into the ER. They did no testing. He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything. When we mentioned appendicitis, we were told he was to young. What gets me, is he gave them a urine sample, but it was never run.

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice. Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home. I kept thinking, if he gets admitted, at least we'll be in the same hospital. Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born. I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later. It was April 17th. I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th. Then we took Noah to the Ped's department where the Urgent Care kids are sent. So we got him in, and ended up waiting in the office for an hour. By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self. The DR, when she finally came in, took one look at him... and knew something was wrong. She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him. When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong. We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him. He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.


Pity walked into the room, again, with pretty much every nurse and confused DRs. Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave. I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother. That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another...

Pity was there then too. Only by now, I had let all my anxiety I had been fighting off take over. I was breaking out in tears, I was a mess. Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't.... he was in good hands, my Mom and his big brother Cal, but I wanted to be there. But obviously, I had to get Nathan out. It was time for him to be born and I was scared. Scared about everything.

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm. Word had spread that my other son was up in PEDs but everyone tried to focus on now. There were questions though. "Why is he there" "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR. It took them 20 minutes to place my spinal this time. I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room... and brought along some luggage. She planned to stay for awhile.

Things went okay, Dennis finally came in and thought I had to be knocked out. He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under. So this would be the first birth of one of his children, that he'd witness. And he was all eyes. I told Dennis, I didn't care about me, I wanted him to stay with the baby. Where ever the baby went, he went. And to take pictures. Don't let the baby be alone. So he did.

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches. He came out SCREAMING ..... and I cried. I cried with joy to hear his little voice, to hear his lungs working ... to have what I wasn't given with Noah. They brought him by me, for a quick look-see and a picture... and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah. Nathan's experience was the same one I had needed with Noah, but never got.


Then Pity started doing her dance. For 36 1/2 weeks, he was extremely tiny. Pity pity ...

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong... I heard things like "cleft palate" and "heart issues" and various other things. Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.


What are the odds of one person having two such dramatically different children with such widely spread health issues... with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been. (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born) All the nurses knew me, remembering me from when Noah was in there. I had kept in touch with a few of them. I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could. I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done. I knew when to leave him alone, and I knew when I could reach in there and hold his hand. Dennis, though, was another story. This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there. It scared him, just like it does every parent walking into it for the first time. I taught him a lot of what to do. How to change his diaper in the incubator. How to kangaroo, how to tube feed him, how to burp a tiny tiny baby. He was a pro, though. He was showed it once, and that was all he needed.




Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date.


Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line. I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)


His tiny hands, and tiny feet amazed me ...

But he did slowly grow........ he averaged about an ounce a week in weight gain. That's it... just an ounce. Sometimes less, sometimes more...



Pity especially came out, after we brought Nathan home and in public. After he got a little older and the questions would come. "Oh how old is he?" and I'd tell them... "Really? He doesn't look that old!" Well he is. My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ... "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask. I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain. Then I get the "can it be fixed?" um, no, he has to live with it like that forever. It could get bigger, it could cause problems, but right now it's stable and we are thankful. Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.




Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?" Especially when out in our Cadillac of a stroller...

And I'd have to say "no, they aren't... there is 16 months between them." To which I would often get the rubber necking between looking at them, and they would guess who was older. Usually picking Nathan, because he had more teeth. Then they want to know what's wrong with Nathan. Pity comes back, and Nathan now ignores them. Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to. Nathan has gotten to be very stand offish to people... they are okay, as long as they are at a distance. Please don't get to close.. he doesn't like that much.


Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together. Kaedyn is in 18 month to 24 month/2T clothes. He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that... Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...

Now that Kaedyn is BIGGER then Nathan, it's hard. Nathan, you can tell, is noticing. He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs. He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well. It's a type of Primordial Dwarfism. We have watched Kenadie's story on TLC. She reminds us so much of Nathan, only Nathan is a little bigger.

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't. It's hard, because it seems like each year, the list of Nathan's issues grow with each year. And grow...... and grow. and grow... but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

Nathan's Hope

To say that Nathan Dorje Andrew is a “Miracle Baby” is an understatement. Nathan has Holoprosencephaly, a brain disorder that causes skull and facial defects, as well as severe developmental delays. In most cases the babies die before birth.

Here are the statistics for Holoprosencephaly:

His condition is about 1 : 20,000 out of every birth. (0.00005)
1 : 200 make it through full term pregnancy alive. (0.005)
less than 2% of those survive through the trauma of birth to their first breath. (0.02)
less than 1% of those that survive come out without health complication which will allow them to live during their short hospital stay. (0.01)
Total odds = (0.0000000005) or 1 : 20,000,000,000 chance. That is 1 in 20 Million.

In the California Super Lotto Odds = 1:18,009,460 (1 in 18+ Million).

Nathan Dorje Andrew
(aka. Mr. Smiles)
Born: August 7, 2006
Weight: 7lb. 9oz.
Height: 19 inches

Now, Nathan is 2 years old and has beaten all the odds.

Unfortunately there is no course of treatment for this disorder. Nathan has had to go through countless tests and treatments. Due to the nature of his disorder, he needs specialized treatments designed to treat the brain. These treatments are not covered by insurance therefore they have refused to pay for most of his therapies.

Because of kind-hearted people, we have been able to put him through some treatments that have helped him, but he is a long way off from walking and even further from being normal.

We refuse to believe that Nathan doesn’t have potential and we refuse to give up and just accept that he will be in a chair non-mobile non-verbal. Now of course we know and understand that it is a possible outcome and we accept that. However, we figure that if that’s his prognosis then if we don’t do anything that’s what’ll happen and if we do something it may still happen but there’s a chance that he will develop new skills so we want to do our best to explore the possibility of helping him develop new skills. All we have to lose is money and we’re willing to accept that loss.

So we have looked at and researched many programs that have the potential to help Nathan develop motor skills. Please see the chart below to review our research:



You can click on the chart above to see a larger version of it.

I have read and done research on brain plasticity and believe that if we follow different therapy plans it’s possible that maybe Nathan’s motor cortex will remap and enable him to gain some motor skills. We’ve already seen this as his occipital cortex seems to be absent yet his vision is perfect. So we’re hoping to extend this to the motor cortex.

Here’s what we’re currently doing:

Physical Therapy: 5 times / week (3 times at home, twice at a clinic)
Occupational Therapy: 3 times / week (at home)
Speech Therapy: 1 time / week for language/ augmentative communication, 1 time / week vital stim (at clinics)
Developmental Therapy: 2 times/ week (at home)
Group Therapy: will soon start twice a week at a clinic
Hippotherapy: 1 time / week

We have also been to Oregon and have done a program called Reach, which is similar to the Institutes for the Achievement of Human Potential. Here’s a video of him doing a session of the program:

Reach Program Video

We were doing that 4 times a day but have winded down to doing it once or twice a day.

He’s had fetal stem cell infusions twice in Dominican Republic. They were given to him by Dr. Rader from Medra.

He’s been to an intensive therapy program at Napacenter.org. He went for 3 weeks, 4 hours a day. He got stronger, but lost the strength very quickly. We would like to go again in the near future.

Hyperbaric Oxygen Therapy. Nathan started “diving” last October.

ABR (Advanced Biomechanical Rehabilitation): We went to Montreal for this program last October: abrcanada.com

G-therapy: We have the first 3 months ready to go and will start him on this program on the week of Oct 13th.

We are now looking at the following things: Future Treatments:

Biomedical Protocol: We are testing him for food allergies and will create a nutritional program specific to his needs. We’ll ge giving him vitamins and supplements to support his immune system and body. We sent the bloodwork, stool and urine samples and will wait for the results to start his diet protocol.

Neuro-fitness: a developmental program that is design to help him to overcome infant reflexes and stimulate new neural connections for movement. Neuro Fitness

After we get back we want to think about/look at some of the other programs listed on the therapy chart.

Our hope is to get Nathan strong enough to hold up his head and possibly his trunk, as well as to develop the ability to say some words.

Finally, we are finalizing the process of getting him a gait trainer so he can gain independent mobility. We’re getting him the Hart Walker and the Kidwalk.

Medically, Nathan’s only problem is Reflux for which he takes prevacid, and hydrocephalus for which he has a VP shunt. He feeds orally (mashed/pureed foods).

Nathan’s hope is that he will one day be able to hold up his head, control his muscles, sit unassisted, crawl, walk, and say words.

Nathan’s life is a miracle - his chances for survival and living past 1 year old were 1 in 20 million.

Nathan not only lives - he is full of life and joy. He is a happy child who loves elmo, his family, swimming in the pool, and reading books.

Nathan needs intensive intervention to achieve goals like head control, rolling, sitting, standing, and crawling.

If you would like to donate to help Nathan click HERE to find out how.

By Brian Andrew of Pray for Nathan

An Angel Among Us

~by Mandy Rady of The Rady Family

I met my husband Mike in High School, we were sweethearts from the start. We have three children, all boys and we are currently living in Stansbury Park, Utah.

When I was expecting Tucker, I was very sick for 6 months I couldn’t keep anything down! I kept having feelings like something wasn’t right, that I needed to have him checked. One morning day I woke up early, I had an uneasy feeling , I KNEW something was wrong. As we traveled to the hospital to see my Dr., we were listening to the radio and they played the song “Angels Among Us”. This incredible feeling came over me and I knew that God was speaking to me. I knew He was sending me an angel.

We had an ultrasound done and the Doc said everything looked good. So we went home, but over the next couple of months I continued with the promptings that something wasn’t right. When we went in for a second ultrasound, we found out it was a boy. During that ultrasound, he got really quiet. It is a moment I will never forget!! He went over and over the baby’s head, measuring it. I then asked if there was something wrong with the baby’s head. He said yes there was, that there was a lot of fluid in his ventricles. They told us to go for more tests and an ultrasound. I left the doctor’s office feeling so scared and worried. Realizing this is why I had felt uneasy for so long, that something wasn’t right the whole pregnancy. Mike and I traveled to Utah with my mom waiting for the unknown. We met with a doctor who looked at the ultrasound who asked if anyone had told us what was wrong with our baby. I said we know he had hydrocephalus. He told us that our baby had Spina bifida and told us to meet with a genetic counselor and get an amniocentesis. I was in shock and remember thinking “what is Spina bifida?”

Mike was going through his OB rotation for nursing and so he had a book with a lot of information in it. We sat down and started reading. I went to get some things we needed. When we met back up, I said, “I feel like his name should be Tucker.” Mike said I was just feeling like that also. His name was meant to be Tucker.

We met with the Genetic counselor and she informed us more about what was going to happen. She told us that as soon as he was born they would do surgery to repair the bubble on his back and would place a shunt in his brain to drain the fluid off. She then told us that he would most likely be paralyzed from the waist down. She also said he could be a vegetable and he would have a lot of needs. We listened to this for 3 hours and took it all in, but my emotions were at the verge. I don’t know why but I was trying to be strong… strong for myself, my husband, for my mother and for my unborn child. The counselor then said “you don’t have to hold it all together. This isn’t fair, it is ok to be sad.” I then burst into tears!! I was scared and felt so alone and sad at that point. We then left her office. We stood in the hallway at Primary Children’s Medical Center… my mom, Mike and I holding each other and crying for what seemed like an hour.

We then went to the Jordan River Temple and walked around, sat and talked and cried. Mostly I was just scared wondering what our future held for our first born and for us as his parents. I was seeking for peace and comfort of any kind! We then went to my Aunt’s house where she gave us a place to stay for as long as we needed. I will never forget that night! It was late and we were so drained emotionally, physically, and spiritually. Mike and I got on our knees and prayed for the Lord’s help, it was the most amazing prayer and I felt my Heavenly Fathers arms around me! The feeling that came over us was peace and comfort. We poured our hearts out to Him, telling Him how we didn’t know what we were to do or how it was going to be, but we knew it was His plan and we would do our best to accept whatever was in the future. We then climbed in bed and cried and talked and cried and talked. Mike had fasted all day and the day prior so he was exhausted and he fell asleep.

I lay awake for quite awhile with my heart aching. This was the hardest thing I had ever faced and I wasn’t sure how I was going to do it! Thoughts kept going through my head that I may lose my son. I wanted so badly to just be able to give it to the Lord, but I felt so heavy with sadness, I just wanted our baby to be ok. As I was laying there the words to the song “Angels Among Us” came into my mind and I then had this incredible feeling that I was being sent an Angel. I felt the Lord very near as well as Tucker. I had peace fill my heart and comfort came to me and I was able to go to sleep.

The long two months ahead were hard! I was depressed for like a week and didn’t want to talk to anyone or do anything. I laid on my bed a lot and the couch feeling sorry and asking the Lord “Why?” I remember crying one night while feeling like this, and people had been calling to wish us luck and let us know they were praying for us. I felt so sad inside and was crying when I heard a voice of a little child say, ‘Mom, don’t be sad that I am coming to earth to live with you.” I got chills and it became so clear to me that I needed to be excited, that he was coming however that may be and for however long he was to be here. I realized how he must have felt for us seeing us mourn his coming so much. I then made a clear decision that I was going to be happy and enjoy this time.

It was much easier from then on. We were at peace with whatever the Lord saw fit to give us! People of all faiths were praying for us, calling us and fasting for us! It was amazing to see the outpour of love, even from strangers!! We felt close to the Lord because of so many kind hearts! We truly were being blessed and saw amazing things happen! Our love for each other grew. We still remember this being the hardest time of our lives, yet the most rewarding time also!

Nine years ago on August 30th, at 4:38pm, Tucker was born. He weighed 5lbs., 13oz.
and was 21” long. He was so beautiful and strong and did very well right away. We instantly had this amazing love for him and felt his little spirit. He was so sweet and never cried, the nurses said he was so good.

I was at the U while he was at Primary Children’s. It was very hard and I wasn’t able to nurse him because he was having surgery the next morning. I wasn’t able to hold him either until he had had the surgery.

I was so excited to get to know him and love him and care for him. Tuesday morning he went in for surgery for his back and shunt, and everything went well.

September 5th (7 days later) we were able to take him home. I will never forget the love that was shown to us by people in our congregation, friends and people around us! One kind woman told me, “You will gain a greater love for the Savior through your child! You will come closer to the Savior because of the service you will be giving to your son.” That really hit me and I felt so inadequate to raise this special little bundle God had entrusted me with!! What an honor and gift from the Lord!


Really I do not know if I could have made it through this without the strength of friends, parents and members of our church. You know the eternal plan our Father has for us truly brought me comfort many times and still does! To know that because of the Savior, Tucker will be made whole, brings great peace!! When he was 3 he would always tell his friends and strangers that the Lord was going to heal him and make his legs work when he saw the Savior. I was always amazed by his strength and his faith!! I still am really. He is always so strong, still through all he has been through, he still continues to know that the Lord is there for him and that he will be ok.

When he was 1, he spent 30 days in the hospital and there were moments I thought we were not going to be able to take him home! Through that time I struggled with giving it to the Lord, I really feel like that was a lesson for me! He was very sick, and I found myself on my knees a lot! Towards the end of his stay at Primary Children’s I was having a conversation with the Lord. I was telling Him that I just couldn’t do it anymore and that I needed Him to take over, that I needed more strength. As my husband and I were on our knees the most incredible feeling came over us and filled the room. I felt as though the Savior himself was in the room and I remember opening my eyes and looking around the room to see if He really was there. I wish I could describe the feelings that were in my heart. I was given strength and peace and I then KNEW He was watching over us and we were to endure whatever was to come.


Tucker has no feeling from his knees down. One day when he was 5 his socks and braces were off and he had felt his feet with his hands and felt like they were cold so he put them on the fireplace to warm them up. He then said, “Mom look what I did to my feet.” I nearly had a heart attack! We took him up to the University of Utah burn center and we waited for two weeks to see if they would heal on their own. One foot did and the other one didn’t so we had to have skin grafts on that one, which meant another surgery. He healed fast after that and still has scars to show for it.

The hardest part for me is to see all his buddies doing the things Tucker would love to do!! I see him struggle sometimes silently, that is the hardest. He has never complained to me about his situation. He has asked me why he is like that and why he can’t walk. I tell him everyone is different and that is what makes us special. When he struggles with things we watch a video or see someone who has a hard road also and then he is ok. When he was really little, maybe 3 or so he would say, “Well mom at least my arms work and I can see what I am doing.”

All the time he finds the positive about his situation. He is always teaching me so many things!! I truly feel like it is an honor to raise him and that he has made me a better person for what we go through each day!

Today Tucker is 9 years old and a ton of fun! Nearly every day he asks me if he can have a cell phone. We tell him he can have one when he gets a job and buys his own. He really wants to be treated just like any other kid and works hard every day to try and accomplish the same things other kids his age are doing! Every Saturday for 3 months he plays wheelchair basketball. That has been really good for him!

Last summer the shunt that he had for 8 years stopped working. He had to have 3 different surgeries within a month to repair the shunt. The first stay lasted about a week and a half and then the second one lasted over night and we had to go in the next day. Then he started school the next week.

It was a rough summer, but once again he was such a trooper! You never know with shunts, but we have been blessed to have had so many years of it working, when it wasn’t it was hard.

One thing I have learned from all of this is that the Lord does hear and answer our prayers. It is not always the way we want it, but it is always for the best. Even if we do not understand at the time, we will later!

When he was little he would cry whenever the hymns were sung!! We would go to church and he would cry through most all the songs. It wasn’t a scared cry, just a cry like he was feeling something. He is still like that, anytime truth is spoken to him, he gets emotional. He is very tender-hearted and close to the spirit! He loves to sing country with me and loves almost all the Primary songs. He loves family home evening and wheelchair basketball. I have seen his self esteem increase since he has been playing. He has a ton of great people around him and they are easily drawn to him. He has a great, cheerful almost silly personality.

We have been blessed by so many strangers because of him!! He got a guitar for Christmas and is excited to learn how to play. There really isn’t a day that goes by that I am not grateful for him and the spirit he has brought to our home and the things we have learned from him!!

We have been looking into VEPTR rods because he has scoliosis and lordosis. We have put it off for a year now and know that is our next step. That means a surgery every 6 months from here on out. We are not excited about it and are praying for peace again!

My advice to other parents is to love each day with your children and don’t stress the small stuff! There are so many things to learn from these amazing little people and their strong spirits. They truly are a gift.

Now when we hear the song, ‘Angels Among Us,’ we know that is our song for Tucker and feel the words are so true and that is our little answer from our Heavenly Father to let us know we have an angel!

My favorite book to read when I feel like I am struggling with things, and hope to share it with Tucker more fully as he gets older is, ‘Finding Peace in Troubled Waters, 10 life preservers for when your ship springs a leak,’ by Art Berg. He himself is inspiring!! Look him up. AMAZING!! Other people we love, Mike Schlappi and Chad Hymas. Their stories and lives have also been amazing!! I have also been inspired by the book, “No Excuses” by Kyle Maynard. Another good book is “When your Prayers Seem Unanswered” by S. Michael Wilcox . I have read so many it is hard to choose but I think these are my favorite.

One of my favorite quotes is by Orson F. Whitney. He said, “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God. . . and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire and which will make us more like our Father in Heaven.”

My husband reminds me, too, when things get hard, that if we want to sit with the Lord in heaven, like our Savior, we have to go through these things and prove ourselves worthy to be with them. That always strengthens me and helps me because I am certainly not greater than the Savior, and my trials seem small in comparison. It helps me to put things into perspective!!

One more quick quote and then I will be done, is by Ezra Taft Benson. He said, “ Men and women who turn their lives over to God will find out that HE can make a lot more out of their lives than they can. He will deepen their joys, expand their vision, quicken their minds, strengthen their muscles, lift their spirits, multiply their blessings, increase their opportunities, comfort their souls, raise up friends, and pour out peace. Whoever will lose his life to God will find he has eternal life.”

~~~

I have a special place in my heart for Tucker and his family. Mandy found my personal blog through the blogosphere. In response to a post about the hard time we were having getting insurance approval for a stander for my daughter, she emailed me and offered to donate the stander Tucker had outgrown. The stander has brought to pass miracles in my life.

Tucker is currently in need of a new wheelchair. A fund has been created to help raise money for this good cause. If you're interested in donating, go to Ability Found: Speedy Wheels to find out how.