The Letters He Would Write

I just had to share this sweet birthday gift to Caleb from his grandmother, Janene Baadsgaard.

Happy Birthday Caleb!
Instead of writing a story for your birthday this year I thought you might want me to help you write a few letters to your mother, father and brothers Joshua, Mathew and Mitchell.
I think if you were able to write a letter to these very special people who love you so much and take such good care of you they might read like this . . .


Dear Mother,

Many years ago you went in for an ultrasound very early in your pregnancy. You found out that I was a boy . . . and you also found out that I was missing my brain. When the medical professionals told you that I had no chance of survival and recommended an abortion - thank you for having the courage to listen to your heart and not your fears. When they told you I would have no quality of life and that I would ruin your family’s quality of life, thank you for choosing to discover what quality of life really means. When they told you I was missing an eye, thank you for choosing to see me as your precious son and not what the doctor called me (not viable - not conpatible with life). When further tests revealed that my entire head had not formed correctly and that my cleft-plate, partially formed nose and multiple missing cranial structures would make eating and breathing in a usual way impossible, thank you for choosing not to despair, but to devote yourself cheerfully and gratefully to my 24-hour care. When the doctors told you to take me home, buy a burial plot and let me die, thank you for choosing to fight for my life and celebrate each day I was in your home.

These past seven years have brought multiple hospitalizations and near death emergencies. We’ve spent a lot of time in hospital, you and me. Thank you for always being there right beside me when each individual breath was painful, labored and exhausting. I’ve heard your every prayer, every heart-felt longing and each exhausted plea to God. And though I’ve never been able to speak a word or raise my arms to embrace you, never doubt how much I love you my precious mother. There is a love deeper than life and broader than time between you and me, an eternal bond that time and circumstance will never break.

I am so grateful that you have chosen to live the past seven years with joy, not sorrow – that my presence was and is enough for you. The world defines us by what we can do. Thank you for choosing to define me by who I am. There will be a day, beyond this life, when I will be able to say all the things I never said, but I have a feeling you already know. When two hearts are knit together, there is often no need for words.

I was born in the winter, a time of waiting before the spring. Always remember that winter’s promise is the hope of spring. There will be a day when the time of waiting is over and all that was lost will be reborn.

I love you mom.

Caleb


Dear Father,

I know you and mom stay up late every night with me so my medication can take effect and also to have some special snuggle time with me. You and Mom usually tuck me into bed around midnight, but it usually isn't long until my alarms start beeping, I need suctioning, a diaper change or more medicine. A few nights a week I have a night nurse who sits with me from 12-6 so you and mom can get some sleep. But on the other nights, it is you and me Dad. You are always there with me when I need you in the night. Those late night hours when it is just you and me mean everything to me. In this life I will never be able play catch, or even speak or hug you. But I know that when fathers love their sons, they love them in the way they need to be loved. With us it is g-tubes, respirators and diapers.

You are always there with me when I need you in the day also. Dad, thank you for going to work every day at BYU so that all of us have everything we need.

Dad, I want you to know about something you may not see. When fathers love their sons like you love me, the powers of heaven open. There are angels around you every night, lifting your arms when you are too tired and keeping you awake when every cell in your body screams for sleep. I am aware of and grateful for every time you turn me, change my diaper, suction me then hug me and kiss me. You never complain, and though I can’t respond when you talk to me, I hear you Dad. I hear every word, spoken or unspoken, every desire, and every prayer to God in my behalf.

I also love the way you tease me like Dad’s do. Like the way you call me One-eye and let me dress up as the one-eyed pirate on Halloween.

I love the way take me everywhere and proudly tell people I am your son. When you come into my room at night I always proudly tell the angels that you are my father.

I love you Dad.

Caleb






Dear Brothers,

Josh, Matty and Mitch - I’m so happy that you are my brothers. You always take time every day to include me and make me an important part of the Moody boy’s story.

I remember when you used to crawl in in crib when I was a baby and sing “I am a child of God” when my heart rate was getting too slow. You always brought me toys and even though I couldn’t play with them the way you do, I imagined myself playing with them and it was still fun.

I love it when you hug and kiss me and tell me about your day. Even though I can’t raise my arms to hug you back, I love the way you lift my arms around your neck and put your cheek next to my lips.

When you talk to me I can’t answer you with my mouth in words, but I hear you listening to me with your heart. When you’re listening that way you can hear me telling you, “I love you Josh.” “I love you Matty.” “I love you Mitchell.” Thank you for helping mom during the day when I need to be turned or suctioned. That is such a nice way to tell me you love me back.

Don’t worry about my eye that is missing. When I was in heaven, I knew the Baadsgaard secret code for telling each other “I love you, you’re wonderful, and you can do it!” It was a wink. I knew that I would never be able to speak to you with words in this life, so I thought of a plan. That is why I chose to come as your brother winking so that you would always know that I love you and believe in you. Thank you for believing in me – believing that I am still your brother inside this body – even though I can’t move, or see or hear or think the way you do. Thank you for believing that even though I’m missing my brain, I’m not missing my heart and soul. Thank you for believing that we will always be one of the Moody boys and we’ll always love each other forever.

I love you Joshua.

I love you Mathew.

I love you Mitchell.

Caleb

Enjoying a Journey

Today's post is from Jennie, the newest member of the kidz krew! You can follow Jennie's story on her blog Enjoying a Journey. And here is her son's story....

First of all, I’m so happy to be a part of KIDZ. Raising a child with a disability can be overwhelming at times. I’ve only recently joined your community and already have felt a strong sense of strength and support. It is nice to know there are other moms and dads out there who share our family’s hopes and fears and also on occasion, our frustrations.

Hi, my name is Jennie. I’m a mother to four fabulous children, one of which has special needs. My beautiful boy, Jackson, is now ten years old. His name was chosen before birth. I always loved the movie, Steel Magnolia’s – a little cheesy, I know. But, it spoke to me. The movie conveyed a sense of sisterhood, family, trials, and endurance. It taught me that with a support system and sometimes a good cry, you can do anything. Now, over twenty years later, it seems a little more than the name of Shelby’s fiancé has carried over into my life.

Five months into my second pregnancy and through various ultra sounds, we were told Jackson had brain structure anomalies. Our fears were calmed when the prognosis was slight developmental delay. Our baby may just be slow to learn to walk. Oh, if that would have only been true, life would have been a lot simpler; less adventurous, but certainly more simple.

Instead we started our specialist appointments on day two after our hospital release. Doctor visits and therapy have continued ever since. As we searched for answers and solutions, delayed development, therapy, blood work, every type of specialist available, communication disorder, apraxia, failure to thrive, surgeries, pervasive development disorder, autism spectrum, and genetic testing became regular parts of our vocabulary, schedule and life. However patience, diligence, hard work, lots of faith, prayer and hope, seemed to have been the key for some relief, although, answers still would not be ours for another seven years.

In 2006, a new genetic test was developed. CGH Microarray changed our lives. This new technology was able to identify deletions or duplications that had taken place in DNA during development. Prior to this technology, only certain known syndromes could be tested for through blood work; thus, the reason for our unanswered diagnosis. Who would have thought to test for a small piece of DNA on the long arm of chromosome seven? No one.

The spring of 2007 set us on a new course when a correct diagnosis was finally made. Even though it was hard to hear that yes, a problem had been identified, it was also such a blessing and a relief to finally have a name for Jackson’s delays. It wasn’t a matter of bad parenting or a stubborn child. There was a reason why our child was unable to speak, was consistently fussy and hard to handle, a reason he struggled to develop relationships with others, and had difficulty learning to run, play and progress like his older sister. The name for our struggle was 7q11.23 Duplication. We would learn Jackson was one of only about 11 in the world known to have this disorder. I immediately tried to find others who knew what we were going through and who could identify with the challenges in our life.

Although we have a large family who loves and cares for us, we felt somewhat isolated. We weren’t sure where we fit into the world of special needs and we were often teaching doctors and therapists about the disorder. After learning all we could about 7q Dupe through our geneticist and through the limited information available online, a friend of mine pointed us to an organization in the UK called, UNIQUE. They specialize in providing support and information for individuals and families who have rare chromosome disabilities. Through the UNIQUE organization, I found two other mothers in the United States whose children share the 7q Duplication. I immediately searched them out.

Three years later, our efforts of supporting one another have led to the formation of a new non-profit organization called, Duplication Cares. Not only do we support the families and individuals with 7q Dupe, but steps are being taken to educate the medical community about the differences between the duplication and Autism. As with so many other syndromes, 7q Duplication mirrors autism and a large percentage of the children diagnosed with the duplication have also received an autism spectrum diagnosis. We now know there is treatment to help our children with the duplication. There is hope. Through hard work, progress can be made.

Our numbers have grown. Our small band of warriors is approaching 50 individuals in the United States. Our kids struggle with speech, social interactions, anxiety, behavior, and are developmentally delayed. Jackson also has a thin corpus callosum and enlarged brain ventricles which contribute to his delay.

At various times in our life, we’ve felt Jackson’s syndrome has been invisible to the outside world. This can be a blessing or a curse. Yes, at first glance, Jackson may seem like a shy, typical, ten year old boy. People have even commented about how lucky we are and that things could obviously be more severe. While that is certainly true, and we are immensely grateful for Jackson’s cognitive and physical abilities, we also have passed through the stages of grief and frustration every parent of a special needs child experiences.

Upon further interaction with Jackson, one would notice his lack of interest in carrying on a conversation. When “hard” questions like “What do you like to do?” are asked, Jackson becomes easily agitated. You may think it odd to find such a physically mature boy still clinging to his mom when he crosses a street, anxiety ridden that a car might approach. It will be concerning to see him have a meltdown when he didn’t get the first shower of the night or secure the middle bar stool at meal times. It will be easy to identify when medication in no longer effective and when ADHD, anxiety, and ODD take over. Yes, on the outside, our boy is not the typical, special needs child, but then again…. What is typical?

Our journey may be different from many of yours. However, I know a few things to be true. We all love our children and want desperately for them to be happy. We want them to be able to grow and mature and develop to their full capacity. We each have different struggles but I also know we each need support. Being a parent of a special needs child is often daunting; the therapy, the appointments, the procedures, the melt downs, the setbacks, and of course, the red tape. However, we also know the joys. We’ve met kindred souls who might not have otherwise crossed our paths. We are giddy with joy when our child speaks after years of therapy and silence. We celebrate each milestone and every acquired ability. And, we truly do know what it means to enjoy the journey.

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!

He's My Son!

Benjamin was born on April 4, 2002. I knew nothing of his many problems until he was born...except that deep down inside during the course of my pregnancy I felt that something was not right. Call it a mother's instinct. (we're usually right) Shortly after birth, my son was taken by medflight to Dartmouth Hitchcock Medical Center. His brain had not developed and he was showing signs of either seizures, myoclonic jerking or a combination of both. As a result, the Intensive Care doctor loaded him with phenobarbital which suppressed his respiratory drive. He was intubated to keep him breathing. I remember those first few days as being such a whirlwind. I couldn't even see straight. (or maybe that was because my eyes were constantly leaking) We were getting hit from every direction with devestating news. They told us that Benjamin would not live. That was the point that we (as parents) hit rock bottom. In the days following his birth, we prepared for his death. Family members from all over flew in to support us during this hard time. We had made the very difficult decision to withdraw his life support and let him go peacefully while surrounded by family. During this preparation stage I was sitting with Benjamin, holding him in my lap. The ICN doctor had come in and was sitting across from me. I remember feeling uncomfortable because he wasn't saying anything to me, he was just staring at Ben's vent while rocking in his chair. When I couldn't take the silence anymore I asked him..."What is going on?" He told me that Ben was breathing above the vent (he was taking breaths on his own) and that he felt that he might just be able to wean him from it. That's when my life took a 360 degree turn. I was ecstatic. I felt hope. I knew in my heart that I would get to take my baby, that I had fallen head over heels with, home. What a joyous feeling that was. My family members still came, but instead of mourning, we were celebrating. I felt like the luckiest mother in the world. (still do) Two days after our gathering, Ben was extubated, and discharged soon after that. Our lives were forever changed.

Benjamin is now a happy, thriving 7 year old. It's not because of his equipment or the formula we are feeding him that he is still here with us (although that certainly helps), it's because he is LOVED. That's the magical ingredient. This child GROWS on LOVE. Every day is a privilege. Every moment is precious. And every night before I climb into bed, I thank my Heavenly Father for the beautiful gift that is my son.

Introducing 'Danielle's Foundation'

My pal Keri recently informed me about this amazing site, Danielle's Foundation. It is an awesome 'non-profit resource for families of children with cerebral palsy and brain injuries.' Given my Chloe's issues, this site is particularly helpful! I have spent the majority of my day so far on the site getting questions answered and in awe of this amazing mom who is so willing to help others. Check out the site and read Danielle's story below....


Danielle Lynnette Vick was born on April 10, 2004 in Atlantic City, New Jersey. Because she was born three months earlier than expected, Danielle needed to be hospitalized for the first 8 months of her life. Her doctors were hopeful and said although she had a long road ahead, there was a great chance that she would be a perfectly healthy child.

Like most preemies, Danielle had some respiratory issues, and some problems with her lungs, so she needed a tracheostomy and ventilator to help her breathe. But she showed everyone she was a true fighter and continued to make great progress. She was a happy, spunky, bright-eyed bundle of joy.

Though her development was delayed, at ten months she was at home, full of personality and continued making progress. She was crawling, rolling over, playing, and just full of life! And then, one day, everything changed.

In 2005, three days after her 1st birthday, Danielle had an episode that forever altered her life. Danielle’s brain went a long time without oxygen. Her parents received the heartbreaking news; Danielle had suffered an anoxic brain injury. The brain damage caused her to lose her motor skills and her ability to speak. She also needed a feeding tube, and was completely dependant upon others for care.

Danielle’s mother, Florence, was quickly thrust into a new world where she had to become an advocate for her daughter to help her get the therapies and services she now needed. It became a constant struggle to get Danielle the care she needed, in fact it seemed like every time Florence turned around the therapies, benefits, and resources Danielle needed were just out of grasp, or were denied by the insurance company. Although her life had been drastically altered, and she no longer was the same active little girl, her vibrant personality and the fight in her remained strong.

Sadly, on December 28, 2008, at 4 years old, Danielle passed away due to complications of her anoxic brain damage. Though her time here ended prematurely, her memory will forever remain. Danielle moved, touched and inspired the lives of many in her short four years of life.

One major result of her inspiration was that Florence teamed with her friend and together they began dedicating their time to help other families—families that shared the same struggles, complications, and frustrations as Florence—get the services, benefits, and care their children so desperately needed.

If you are the parent of a child with a brain injury, we know the questions you have, the frustrations you face, and how your biggest goal is to make sure your child lives the best life possible. It’s a little more complicated to get our children what they need, and it takes a little more time, effort, and research, but with the right support and direction, it can be done!

We created Danielle’s Foundation as a place where parents can come to for guidance, resources and most importantly support. We’re hoping you’ll join us in our crusade to provide peace of mind and hope for the future for parents of children with brain injuries everywhere!

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

A Wink From Heaven

A compilation of thoughts written by April Moody from the blog Wink From Heaven, which is about her son Caleb...

"If, therefore, thine eye be single, thy whole body shall be full of light." ~Matthew 6:22

I remember the night I found out that our baby Caleb had significant problems. We were faced with the unbearable possibility that our baby might not be born alive. During our first glimpses of him we were filled with worry and deeper heartache than I had ever felt before. The next day I remember telling my mom, "this isn't how I imagined my family picture." I didn't imagine hanging a family picture on my wall that had someone missing. I also hadn't pictured a child whose time may be limited and whose challenges would be severe. It wasn't that I didn't want a disabled child. I wanted Caleb more than anything in the world. I had the opportunity to voice how much we wanted Caleb in many of those early doctor appointments when they presented our options. I pleaded with Heavenly Father for the opportunity to take care of our baby no matter how big his challenges were. We wanted Caleb with all of our hearts, his circumstances just weren't what I had pictured.

I remember that phrase, 'This isn't how I imagined my family picture' every time I put a new photograph in a frame, add a picture to a scrap book, or hang a portrait on my wall. My heart is filled with so much gratitude every time I look at my sweet little family inside those frames. It wasn't what I had pictured, and it is so much sweeter than I could ever have imagined. I would never have pictured how proud I would feel of Caleb for his courage, faith and patience. I never pictured how full my heart would feel as I watch my other little boys lovingly watch over him. I never pictured how my sweet little boy, whose time may be limited and whose challenges are severe, would touch the deepest parts of our hearts and change our lives forever. Just yesterday Matthew told me, 'I just get such a big loving feeling inside whenever I'm around Caleb- and I just have to hug him!'

I took our little family into the studio for some last minute pictures before Caleb went in for surgery [last November]. The pictures aren't fancy, but nothing could be more beautiful to me. I would never have pictured the exquisite delight I would feel in hanging photographs of theses precious souls on my wall...

When I was pregnant with Caleb, we were so excited to find out what we were having for our third child, so our kind friend offered to do an early ultra sound so that we could meet our new little family member! As we were driving to the clinic, I started to feel extremely uneasy. I asked my friend if he would tell us if anything was wrong. He reassured us that he would and that he would probably say something like, "we'll need to talk to a doctor about this."

As soon as the ultra sound began, our first glimpse was of our baby's' head. I immediately asked "is it supposed to look like that?" Instead of seeing any brain tissue, it was completely black. Our friend said, "We'll need to talk to a doctor about this..."

I started to cry and tried to focus on other information he gave us-- we were having a BOY!!! We were counciled to set up appointments with doctors and specialists so that we could learn more about our special little guy. Our hearts were heavy that night as we worried about our new little boy and the challenges that were likely ahead.

Within a few weeks we decided we wanted to name our little boy so that we could pray for him by name. We named him Caleb Joseph! Caleb was a righteous Israelite in the Old Testament who was always faithful and was known for his fearlessness in the face of overwhelming odds.

October 2004:

Dear Caleb, you are not going to be born for another 3 months, but you are such a special part of our family already. You have such a strong and compassionate spirit. I have felt so close to you during this time as we have been uncertain about what your birth will bring. About a month and a half ago, we discovered that you have a great amount of fluid in your brain. Our hearts have been so tender as we contemplate the possibility of only having you for a short time. Our hearts ache knowing that you may have significant problems throughout your life.

In the midst of the uncertainty, there are some things I know for sure. I know that you are my son for eternity. I know that you have an important role to play in our family and that we are privileged to be a part of it. I know that you love us and that you are aware of the deep love we have for you. I know that the Lord hears our prayers and sees our tears....Although I don't fully understand why you have physical hardships, I know that you have a valiant and loving spirit. I really feel you at times comforting me and that you want me to know everything will be okay....

This past week we had an MRI which confirmed the missing corpus collosum, a blockage causing excess fluid, and that you are missing your right eye. Getting that information broke my heart because I don't want you to have one more physical obstacle....I know that your spirit is not limited and that you have a special mission...I have seen hearts change just when people find out about you...

January 6, 2005:

Caleb was born at around 10:30 AM. His little cry was music to my ears! I got a quick glance before he was passed through a little window into the NICU. I got another glimpse of him as I was wheeled into my recovery room, and he was being prepared for transport to Primary Children's hospital. He was beautiful! In spite of the challenges I knew were ahead, I was just tickled so see my new little boy. His spirit is so big, and he just radiates with love.

Dear Caleb, you are here my precious boy! I am so full of love for you, my heart can't contain it all. I thought my heart would burst when I heard you cry after you were born. When they held you up for me to see, it was like looking at an angel! I knew today would be a life changing day for all of us - and it was. My life has been forever changed for the better because you are in it. I only got to see you for a few moments, but those moments will be treasured for my whole life.

January 7, 2005:

Dear Caleb, Today we spoke with your doctor and he explained many things to us. Your brain has not formed. It appears there is little they can do but stabilize you and prepare you to come home with us.... they don't expect you to live for more than a few weeks....at this moment I don't think my heart can bear the thought of letting you go. How can I look into that precious face knowing that my time is limited? I just want to stop this moment in time and hang on to it forever.... I wish I could choose the outcome, but I know your eternal outcome is already known. I pray that your spirit knows how much you are cherished. Each day I have with you is a treasured blessing....

This morning I got to hold you for the first time! It was like being in Heaven! I couldn't hold back the tears as I held your sweet body in my arms. I just rocked you back and forth and tried to memorize every bit of you. Your sweet spirit just seems to heal my soul. It saddens me so much to know that I may spend much of my life missing you. Do you know how dear you are to me?...Do you understand that the hardest thing I will ever do is let you go?

Today was your blessing day. We were able to gather in a hospice room with Dad and I, your grandparents, one of my aunts and our bishop.

Your blessing outfit was huge on you but you still looked like an angel....there was such a special spirit in the room and your Daddy gave you a beautiful blessing....Each of us had a chance to hold you. It was such a special afternoon. That night you weren't breathing very well and we thought you were going to be put on the ventilator again. We were told to be prepared to decide whether or not we would want to do that or just let you go. My heart was in agony as I contemplated letting you go before I was ready. Fortunately, the doctors were able to reposition you and get you breathing again.

...as I was alone in my hospital room that night I was overcome with sadness. I just can't bear the thought of losing you...I want you to know how much I treasure you and although I don't understand why things need to be this way, I know that the Lord knows our needs and will comfort my breaking heart...

January 13, 2005:

One of my favorite days was Tuesday. Our doctor let Dallan, the boys and I take Caleb into a hospice room, and Josh and Matthew were able to see Caleb for the first time!

Normally no children under age 18 are allowed, but our sweet doctor has been so kind to consider the needs of our little family during this time. Josh and Matthew were so excited and I was so touched as I watched them hold and interact with their little brother. Josh was so tender with Caleb and just couldn't stop hugging him and rubbing his face against Caleb's face. His little spirit was so full of Joy to be with his baby brother. He didn't want to put him down. Matthew was so excited not to be "the littlest" anymore and just loved holding Caleb! He couldn't wipe the smile off of his face, and he loved playing with Caleb's little fingers. The boys were able to hold and snuggle their baby for two whole hours. As parents, our hearts were so touched to have such a special time together, because even when he's home, Caleb will have to spend most of his time under an oxygen mask.

The past few days have been really full as we've been learning how to use all of the hospice equipment so that we can take care of Caleb at our home.... We are so excited to get to be near Caleb everyday! We know that even though we are overwhelmed with how we will be able to keep up with 24 hour care, our family is so blessed to have this little miracle in our lives.

Caleb was in the NICU at primary children's hospital for 8 days. He was so sweet and patient with all of us. He only needed a ventilator for a few days, then was able to breathe with supplemental oxygen. It became apparent to all of us that there was nothing more that could be done for him in the hospital, so we prepared to take him home.

It was overwhelming at first to bring Caleb home. We were surrounded by a host of hospice helpers, learned how to use a kangaroo pump, run the oxygen equipment, and tried to keep Caleb as comfortable as we could. We were counciled to pick out a burial spot, and we did. We worried if each day would be our last.... We had a birthday party for Caleb every week to celebrate his time with us, and we realized we wanted our time with Caleb to be JOYFUL. We decided not to let the medical community take our hope away. We decided that we could celebrate each day and have hope for the future instead of grieving.

January 18, 2005:

Josh loves to hold Caleb's hands and we often find him just quietly watching over him. Matty likes to sing Caleb the ABC's over and over again. We're trying not to look too far into the future and are just enjoying each day with our little miracle - even diaper changes are just sweet and fun!

Caleb has brought an overpowering spirit of love into our home. We feel so honored to be with him. Every time we change his diaper, rock him in the rocking chair, kiss his soft little cheeks, or even just stare at him through tear filled eyes -- we are reminded how much Heavenly Father must love us to bless us with this time with our little miracle. Our hearts are wrapped so tightly around our little baby. We are just so in love with him!

He responds so much to love....

and as we hug him, sing to him, or stroke his little face - his oxygen levels and heart rate always seem to improve.

Caleb has taught us what perfect love feels like. I have watched the way people linger at his crib side and didn't want to leave his presence...

April 2008:

If I knew I had to say goodbye to any of my sweet boys, what words would I want them to hear from their mom? I've asked myself that question numerous times especially during tender times with Caleb. It seems like there should be a bigger way to say "I love you"- Where are right words to say that I love them so much that it takes my breath away- that I love them so much that sometimes it even hurts- that I love them so much that my heart wants to beat for them? I know that before they were born just the "hope" of them filled my heart with joy- that when I was expecting I loved knowing that they were growing right next to my heart- and now that they are here, my heart is wrapped so tightly around them that I can't breathe.



I took Caleb to the doctor today and spent the afternoon having chest x rays. He did aspirate and as a result has Pneumonia. He isn't moving air through his lungs very well. He is on a big dose of antibiotics and is in need of a lot of supplemental oxygen. My heart has been tender as I've wondered what I should say to Caleb today. How do I tell him how dear he is to me and how proud I am of him?

But then when I wrap my arms around him, and when I'm really still, I can feel his heart telling me that he knows- and that...

"I love you" is enough.

January 2009:

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has a miraculous effect on people. During his last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them - He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.


This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.

My 2nd little boy, Matthew, would often tell us that Jesus peeked in our windows...I know that the Lord has kept a close watch on our little family as we have been on this journey together...

Caleb is currently 4 years old!

He continues to remind us to find JOY in our journey every day!

We aren't sure how much he can see out of his eye, but we know he responds to light. We are also unsure of his hearing abilities, but I see him respond to my voice, to music, and sometimes to loud sounds. Caleb has a trach to help him breath. He also has a shunt to help drain the fluid from his brain.

Caleb is currently on Phenobarbital (seizures), Levothyroxine (thyroid) Previcid (reflux) Baclofen (muscle relaxant) and atrovent (airway) We have had him on topamax, zantac, and erythromycin, but have since weaned him off of them. We also tried Helmet therapy to help with the shape of his skull, but decided it wasn't worth making him uncomfortable when only minimal results were expected. We have also opted not to have surgeries for his cleft palate at this time.

Caleb is a peaceful and patient little boy. His whole countenance shines! He loves to be LOVED. He loves it when I rub his feet, sing to him, and snuggle him. He is so patient with us and he is patient with the challenges he faces in his little body. Even when he has hard days with his respiratory system, seizures or feedings, his little spirit still shines through. He loves to be surrounded by his family and he loves to hear our voices. He also loves it when he is well enough to be outside to feel the sunshine on his face.

For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!

Our biggest goal is to simply surround Caleb with our love...

We have a vision specialist/preschool teacher who visits him twice a week. I have a consult with a physical therapist and Occupational therapist once a month so that I can continue to keep his body stretched and comfortable. Overall, though, I know that Caleb grows and responds the most to LOVE! I know that he has a happy spirit and that he wants our time with him to be joyful!

We are so thankful for our little miracle. The overwhelming love we feel for him gives us just a glimpse of the way that our Heavenly Father loves us. The tenderness of knowing our time with him will be limited is also surrounded by so much sweetness. I wish there were a "heart language" that could portray the sweetness that surrounds us as we watch our 3 boys love each other, as we feel Caleb's sweet little body in our arms, and as we feel the love that has filled our home to overflowing.

My biggest sources of inspiration are prayer, other parents, the scriptures, and music.

Two of my favorites songs are:

"I Feel My Savior's Love"

and "Consider the Lillies."

The lyrics:
Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

Some talks that have recently inspired me are: The Ministry of Angels by Jeffrey R. Holland, Come What May, and Love It by Joseph B. Wirthlin, and The Infinite Power of Hope by Dieter F. Uchtdorf.




***Caleb is having surgery today to get a G-tube to help him eat, and a nissin to help with reflux. Please keep your thoughts and prayers with Caleb and his family. Visit their blog, Wink From Heaven, to send them well-wishes and to thank them for sharing their special story.

Silent Angel

About Jophie
by Jophie's mom Trina

In 1993 I had just completed my foster parent training. Little did I know that just a few minutes from my home a sweet baby was being born. That baby would soon become my son.

Jophie was born April 9, 1993. I received my foster parent license in the mail on May the 8th and on May the 9th just one month after his birth I received that call.

At 26 I was very nervous to be going to "just peek" at this sweet but very ill baby boy. This would be my first foster child and a baby at that! The next 30 minutes driving towards the hospital seemed like an eternity.

Brain damaged

Vegetable

Medically Fragile

CT Scans show sporadic damage

Guarded Life Expectancy

That was just a few of the words I would hear that day.

Did I hear those words?

Yes.....Sort of.

My eyes could not get past that beautiful baby lying there. His eyes and that hair....Oh my! There was so much more to him than all those big words and tests. He was small at just under 5 pounds. Small but mighty would soon outline the life of one baby boy who many thought had a grim future.

Yes! He was indeed about to show the world just how much more there was to him!

As we began our journey together, it became apparent to me that we were on no ordinary road to say the least. In the beginning the road was full of many bumps as we battled seizures, severe spasticity, feeding issues, many screaming sleepless nights and days as he battled drug and alcohol withdraws.

On February 11, 1997 just 2 months before his 5th birthday, I made this perfect little boy my son and so began our journey as mother and son with a much bumpier road full of its own share of curves, twists, and turns.

His health began to fail slowly but steadily as even more problems began to tumble into the mix. He began having numerous infections, pneumonia's, and rashes of unknown origin. The severity of his cerebral palsy and brain damage were becoming more evident with his age as he appeared to "stand still" in time cognitively. His motor skills were almost non-existent.

At this time it was determined he portrayed skills that of a newborn to 6 month old. Many tests and feeding studies were performed to check for reflux and aspiration as we felt he was doing both based on the chronic lung infections. The tests continued to prove non-conclusive.

By the age of 5 he became infected with varicella pneumonia from the chicken pox vaccine. YES it is unusual but it was what it was. I still thank God every day for my dear friend and sons pediatrician for listening to my heartfelt plea from his hospital room that early 3:00 a.m. morning. Even when the attending doctors felt I was wrong she believed me when I said, "He's dying before my very eyes". Sherries love for Jophie would prove to save his life that day. Thank you my dear friend!

Less than 6 hours later he was being rushed to the PICU in DIC(Disseminating Inter vascular Coagulation), shock as well as a severe case of chicken pox outside and within his lungs. Every breath would prove to rupture those blisters spreading it even more. His respiration's were in excess of 80, his heart rate was zooming. My baby was slipping away fast.

Papers were being shoved in my face. Sign this

Sign that

"Do you want us to save him?

"Is he a full code?"

Extraordinary measures taken?

Can we give blood if we need to?

Those were the questions being tossed at me as they gently guided me from his room.

One last kiss and one last "I love you" were what I thought would be my last.

Hours later by the grace of God AGAIN......Jophie was stable but very critical
He would remain critical for several days which led into weeks and then months. This was by far one of the worst emotional roller coaster rides we had been on thus far.

Over the course of time he would prove to not just me but to many doctors, nurses, and onlookers just how strong a fighter he was and indeed how powerful our God really is. God moved mountains for Jophie and changed many lives during that hospital stay including mine.

The next few months things settled down a bit. He continued to battle chronic pneumonias, infections, and sometimes rare/odd super bugs however, we made the best of it and were able to make some wonderful memories!

By the time he was nearing 6 the pneumonias and infections were pretty much constant. Feeding was becoming more of an issue. Don't get me wrong Jophie LOVED food! His favorites were cotton candy yogurt, pintos and cheese from taco bell....(TONS of sour cream please!) :O) In fact I had just introduced him to chicken nuggets, cheese burgers, chili, and spaghetti! I had found a way to grind up just about anything with a combination of bread and apple sauce making it possible for him to eat.

Just beyond 6 years he was literally bombarded again with not one but 2 super bugs. Staph E. and enterobactor....UGH! By this time in his life, infectious disease had become our closest friends. Jophie continued to be named in their medical books for oddities and super bugs.(I would have rather he been anonymous).

Regardless, this hospital stay lasted nearly 6 months and once again he would meet face to face with death. The super bugs that he had were not only found in his blood but also in the cultures from his lungs. The only way for those to be there would be from aspiration. It was determined that testing be done again for the reflux and aspiration. The testing did indeed prove he was and most likely had been since the age of 2 ("Silently aspirating and refluxing") It had went undetected until that moment.

My world so I thought stopped. The one and only thing that Jophie and I could do together that was "normal" was eating and they were about to take that from us. I fought and wrestled with God. NO! I did not want this to happen. Don't take away the only "normal" thing we can do together. He enjoys eating so much!.

Finally, after tons of praying, struggling, fighting and arguing with God literally, I realized it was either this or he was going to die. My focus switched very quickly to being thankful for his life. I also knew that even though we had been dealt another blow, with my help Jophie would learn to adapt and we both would come out better and stronger than before!

All food at that time was stopped forever, a central line was placed, TONS of steroids were put on board for healing his lungs, many big gun antibiotics to battle these 2 bugs were being used AND TPN and Lipids were started to sustain him until which time he could recover enough for surgery.

The plan was to perform a fundoplication(Wrap the esophagus around itself to stop the refluxing and aspirating), place a feeding tube and cut the muscle where the intestines meet the stomach to create quicker dumping.

Without all the food and liquid that his little lungs had grown so accustomed to, his body slowly began to heal. When he showed what we felt was the best improvement, his surgery was scheduled. That 2 hour surgery turned into 12 because of many complications. The surgeon was able to perform all but one of the procedures. She was unable to cut the muscle for quicker dumping due to time spent under anesthesia, lack of access due to his misshapen back/chest, and scar tissue from damage sustained over the years.

Jophie healed slowly after surgery due to his puny state to begin with and by the first of the year we were able to return home. At home IV therapy was continued via his central line by me for the next 6 weeks. We had to continue for 6 more weeks after that because his blood was still testing positive for the staph E. Finally, all blood work came back negative and his central line was pulled.

During the summer/fall of 2004, Jophie would spend nearly 5 months hospitalized facing death toe to toe once again.

During this stay he would be infected with Proteus Morabilis TWICE, Pseudomonas, Stenotrophomonis Maltophilia, A pleural effusion and thank God it resolved itself, An AVM(Arterial Vascular Malformation) which caused a GI bleed and surgery was required to repair it, Paraflu(Which we both had for 2 weeks), Psueodomonis became active AGAIN, many allergic reactions to antibiotics, Tons of side effects, withdrawals, rashes, severe diarrhea, Neutropenia(Low white count), Pancytopenia(Low white count, red count, and platelets), blood transfusions, adrenal failure, AND finally home! Phew! What a Ride!

One year later he was still trying to recover. His body was battered, much weaker, and we continued to control break through seizures that at one time were mostly controlled and were unable to fully wean him from the very steroids that saved his life. We now fear his adrenals have failed because of it. We're hopeful the adrenals will begin working on their own again but, until that time the steroids that have caused this problem are once again saving his life.

Two years later in 2006 he would be hospitalized with Mycoplasma and C-Diff. Fortunately, I was able to bring him home after only a weeks stay. I along with Jophie's nurses would continue a 6 week long treatment regimen to kill those nasty bugs. It was during this time that I finally accepted the fact that I just couldn't keep track of all his medications. The many medications he was taking multiple times during the day made that abundantly clear. I usually manage just fine however, when he is ill you have to add the "extras" on TOP of what he already is taking and that's when my eyes begin to cross. The solution. A dry erase board mounted on my living room wall.:0)

March 2008 would prove to be another life altering hospital stay. After nearly going into respiratory failure, Jophie was transported via ambulance to the hospital where he landed in the PICU for the next 3 weeks in very critical condition.

Over the years Jophie's back/shape has gotten much worse making it next to impossible to treat him during a crisis. Fortunately, the wonderful PICU docs and staff were able to stabilize him on CPAP rather than placing him on the vent. He responded very well to this treatment and it would prove to save his life.

Tests would reveal an active Pseudomonas again. For those of you who haven't followed Jophie, he is colonized with Pseudomonas meaning it never goes away but rather goes into an inactive state. The plan is to keep those evil bug colonies down to a small number all the while trying to build up Jophie's good army who are in a constant battle to keep those evil ones at bay! I like to think of it as dragon slaying. Now if I could just find me a knight to slay these dragons we might be in business ;)

Because of Jophie's misshapen body and the poor state of his overall health it was determined that a trach was in order to prolong his life, give him a better quality as well as make it possible to effectively treat him during a crisis all of which I felt were very important if not life sustaining. What I didn't know was how long it was going to take to get to this point nor what he/we would have to endure along the way.

To say the last 7 months have been horrendous would be an understatement of great magnitude. If fact, 6 weeks into this new trach lifestyle I began questioning my decision to even allowing it.

The last 6 months Jophie has struggled with severe pain. He was coughing up blood on a regular basis. He was unable to sit up or to vocalize nor were we able to explain to him why. He's dealt with fear and frustration over that inability to vocalize. There has been lots of crying and gnashing of teeth. We both have had many sleepless nights and days as well as many trips to the ENT who was overseeing his progress as well as troubleshooting the problems. My battles with his insurance over yet more medical supplies related to this new trach continue as they still are limiting or refusing to cover needed/life sustaining items. The battles are never ending. Like I said we need a knight to slay these dragons who seem to come in many shapes and forms ;)

During the course of all this mess we were able to determine that Jophie was unable to wear the size or brand of trach that was originally placed. In fact it caused a huge ulcer and nearly bore a hole through his windpipe thus the cause of all the bleeding/pain/infections which led to a 2nd trip via ambulance due to his airway nearly closing off while Jophie's nurse and I watched helplessly. Ugh! A smaller pediatric trach was placed in the ER then he was admitted for surgery number 2 where the new pediatric trach would be evaluated as to whether or not to keep it and repair any damage sustained by the old trach as well as remove any granulation tissue that may have formed. To make matters worse, were having to boil/reuse these trachs which was causing the reoccurring infections not to mention warping the trachs which also caused more damage/injury and could have easily broken off in his airway.
Fast forward to now October 2008.

Jophie is a much happier little guy! After many trials and lots of tears, we've found the brand of trach Jophie can use. Of course its custom and pricier than the rest but, its working and I for one am NOT going to muck with it! Would you? :0) His anxiety/fear has lessened considerably if not completely during daily trach cleaning as well as his weekly trach changes. He's been able to sit up for short periods of time and often for a couple hours. We've really seen improvements just in the last 3 to 4 weeks and have actually been able to do some "fun" things with him for the first time in sooooo long! I can't tell you how healing that has been for not only Jophie but me as well. He's still swollen quite a bit from the massive steroids but we are successfully weaning trying ever so hard to get him back to his maintenance dose. If all goes well barring any complications he should be back to maintenance by the second week of December! Phew! It's been a long road on this wean starting way back in march but so far so good!

Daily we continue to juggle steroid dosages by increasing and decreasing based on illness, stress, infections etc...Infections and super bugs continue to plague him. He now sees a pediatric endocrinologist at Columbus Childrens Hospital for his failing/failed adrenals. 5 years ago I changed his formula to Novasource pulmonary which is geared towards children with breathing and respiratory problems. This formula has absolutely been miraculous unfortunately we've just found out they will no longer be making it so the hunt is on for something comparable. I've also incorporated 3 different types of yogurt including an immunity booster as well as crystal light immunity which we add daily to his water infusions. Our hope is these things will help his compromised immune system as well as the candida that plagues him off and on. He now weighs around 100 pounds and daily we are slowly seeing the sparkle return to his eyes. I know without a doubt the new things we are trying are helping but the real credit goes to our heavenly father who continues to keep Jophie wrapped in his loving/healing arms.

The years have indeed been hard on Jophie. He has endured more than most do in an adult life thats for certain. He's faced death on more occasions than I can count. He's battled the ventilator on more than one occasion and he's had his share of surgeries and surgical procedures. He also has endured and continues to endure more tests, painful and unpleasant procedures, braces and corrective equipment, treatments, surgeries, rare and deadly super bugs and faces many monsters beyond what any of our imaginations could fathom. Jophie accepts all these daily routines that help him to survive and yes....he does this with a SMILE!

As you can see Jophie is MY LIFE. He is in every single breath I breathe. I love him so much sometimes it hurts which only fuels me further to fight for what he needs. He is indeed a special little guy who continues to touch lives everywhere he goes. I've been witness to miracles beyond measure and watched Doctors and Nurses stand with mouths gaping open as they try to comprehend what has just occurred. Time and Time again he survives, proclaiming loudly for all who see...

There is a God, I am loved, and above all he is in control. I am not a mistake nor am I damaged goods. I'm perfectly made and worthy of saving.

A masterpiece.

If he does nothing else in this world except for changing hearts and making others see beyond his disabilities and really SEE HIM as the masterpiece that he is, THEN he's accomplished everything.

It's been a long, scary road. We continue to travel this road together. Jophie and I with Jesus holding our hands.

A hero is said to be someone who is distinguished by exceptional courage and strength.

My life has forever been changed by such a person.

He's my hero

He's my son.

A Day in our Life

While most people have long since settled for a good nights sleep, Jophie and I are just beginning our day bright and early at 1 a.m.

1 a.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give Carafate/Sterlize water/Add Immunity booster to his water infusion/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Albuterol Breathing Treatment

3 a.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Bendaryl/Zofran/Mix crushed meds with sterile water and leave to soak/Repostion Jophie/Change diaper and bed pad and/or sheets that are usually wet/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

6 a.m.--Tube feeding is finished/Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet/Aluterol Breathing Treatment/Flovent/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

7 a.m.--Carafate

7 a.m. to 9 a.m./Try to catch a few Zzzzzs!

9 a.m.--Nurse arrives/Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Zofran/Prevacid/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Albuterol and Intal Breathing treatment/Give Flovent/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/I lie down to try and catch a couple more hours of sleep

12 p.m.--Reposition Jophie/Change diaper and bed pad and/or sheets that are usually wet

1 p.m.--Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes/Give Carafate

3 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours/Eeek! I haven't eaten yet! Make a mad dash to grab some food!/Grab any meds at pharmacy/groceries/pay any bills that needs paying while I'm out and about

5 p.m. on Monday/Tuesday/Thursday Nurse leaves/3 p.m. on Wednesday/Friday Nurse leaves

6 p.m.--Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet

7 p.m.--Give Albuterol and Intal Breathing Treatment/Give Carafate/Begin water infusion which takes 2 hours/Set Timer to alarm every 20 minutes

Try to snatch a few more Zzzzzs here!

9 p.m.--Prepare Novasource Pulmonary for tube feeding/Crush Medications=Klonopin/Tegretol/Cortef/Mix crushed meds with sterile water and leave to soak/Reposition Jophie/Change Diaper and bed pad and/or sheets that are usually wet/Give Abuterol Breathing Treatment/Give meds via Mic-key and begin Tube feeding/Set Timer to alarm every 20 minutes to give slow bolus till all feeding is done which takes around 3 hours

1 a.m. and we begin all over again!

This breakdown of our schedule doesn't even include the many other things that have to be done daily with no set time. I've only included the necessary things that HAVE to be done and HAVE to be on a schedule.

Now for the "other" things that also need tending to but we have to just work in between everything else

1. Tubing changes on his Oxygen Concentrator/Nebulizer/Air Compressor and Tubing to his trach

2. Equipment check on all of his equipment to make sure everything is in working order

3. Answering any alarms from those machines

4. Suctioning

5. Range of Motion/Stretching

6. Bathing/Grooming

7. Cleaning Filters to all machines

8. Sterlizing water and/or any equipment supplies that need it

9. Laundry and just keeping up with his Bed pads/sheets/clothes that tend to be
soggy from just bout every body secretion you can imagine is a chore in itself and then theres mine!

10. Dishes

11. Sterlize/wash all his tubes/syringes/feeding bolus sets/Trach mask/Nebulizers masks/Trachs/bottles

12. Pooey Patrol! Every 3 days we have to give prophylatic medications to keep up with that little sluggish system of his! ;0)

13. Phone calls daily to Medical supply companies/Insurance

14. Restocking Medical Supplies/Putting Medical supplies away as they are delivered

15. Bills that have to be paid

14. Trips to the pharmacy for medications which seems to be neverending

16. The house and outside yard comes very last but still houses need cleaned and yards need mowing

Now try slipping in there an "outing" or something "fun" for Jophie besides all the medical stuff or how bout a doctors appointment or worse still he gets sick and then we have a whole nother set of meds and treatments!

Phew! Jophie sure is a busy kid and keeps his momma and nurses busy too! It definitely takes a team to care for him and meet all his needs on a daily basis. I'm very thankful for the nurses we have and wouldn't trade them for anything. In fact, they are more like family than "hired help". I like it that way especially for Jophie. Everything in his life is so "clinical/medical" and his home is one place I won't have that. He needs to feel comfortably in his home and know this is a fun/safe place to be! Now, if I could just find another nurse to fill these gaps we are having on the weekends I'd be one happy camper. We are still winging it alone every other Saturday and are limited 3 out of 4 of our Sundays. This weekend is one of those weekends and I for one can tell you....I am one tired momma! No regrets and no complaints from this corner though! I'd go to the ends of the earth to meet Jophies needs no matter how tired it makes me!

Meals 4 Wheels is a collaborative project inspired by Jophies need for transportation and medical supplies. Due to Jophies progressive illness, he is no longer able to ride in our current vehicle safely or comfortably. Our goal is not to get a new car, but to supply Jophie with a safe means of transportation. As medicaid continues to cut costs and pay for less of his medical supplies and equipment, Jophies needs have become greater. This is how the idea of the cookbook came about.

The actual cookbook was created from our success with weight loss. Since May of 2007, six of us collectively have lost a total of over 200 pounds. This was done exclusively by using the types of recipes in our cookbook, exercise, helpful tips as well as an overall lifestyle change. Through a lot of experimenting we were able to create healthful recipes without compromising what we all love most. The Taste! We believe that this cookbook can help you successfully lose weight and improve your own quality of life, just as by purchasing one you will help us to improve Jophie's quality of life.



Please support Trina and Jophie by leaving comments and checking out the cookbook site here.