Jude’s Upcoming Trip to Delaware

This hospitalization has been tough on Jude. He has once again been faced with a big battle but once again he is fighting it. He’s getting better everyday. We still don’t know exactly what virus he contracted. We just know it was a bad one. This virus effected his respiratory, neurological, digestive and even cardiac systems. We have had a lot of scary nights and days but I am happy to say that it looks like this virus is coming to an end. He’s a fighter for sure.

As you know, Jude was once again denied for his synagis vaccine that we have to raise money for every year. It cost 3000 for one shot and he gets eight! We were able to raise money for this vaccine the past couple years but unfortunately this year we were unable to. We kept Jude out of the hospital for several months and have taken extra precautions with him not having this vaccine but unfortunately here we are.

Jude has a pending application to get a grant to cover his shots for the remainder of the cold and flu season. He’s already missed multiple but they still think he needs to receive what he can. This application process has had a couple bumps in the road but thankfully it looks like we are moving forward.

In recent months we have noticed a bit of a decline in Jude’s movement and fine motor skills. His therapies have been more challenging and we have also noticed some discomfort when moved in certain positions that didn’t bother him before.

We will be heading to Wilmington Delaware for Jude’s upcoming appointments at AI DuPont Nemours Children’s hospital in February. He has a busy schedule while we are there as he sees multiple specialists, therapist and also receives imaging. This is a long trip that is pretty rough on Jude however, we know it’s the best place we can take him. Please be praying that we can find answers as to why we have noticed the lack in movement and spinal discomfort. We have always known that Jude has spinal stenosis, kyphosis and a cord tether. They have talked about the possibility of surgery his entire life and it’s always something we pray he doesn’t have to go through but also prepare ourselves for the possibility. It takes two days to travel there as we have to stop and give him breaks from his car seat as he tends to seize and also experience stiffness and discomfort. We will be starting this journey on February the 13th and we appreciate all the prayers for smooth and safe travels.

Jude’s daddy will be taking off several days from work for this trip as he would never miss such important appointments with Jude. However, it can be financially taxing with the cost of the trip and the time off of work. God has provided for every trip and every season and we are always thankful and hopeful. We will be attaching our fundraising page for those who feel led to help out. Every dollar matters and no amount is too small. We have been so greatly blessed with such a wonderful tribe that is always there to love, support and pray for our Brave Little Warrior.

We will be taking this trip with Jude, mommy, daddy, grandma and grandpa. Jude is a loved little boy with a family that all steps in. We love you all and are so thankful for each of you!

~ Hannah

Click here to donate

National Dwarfism Awareness Day

Today is national dwarfism awareness day. My son is the center of my universe! And he has a very rare form of dwarfism. I remember when I first found out in utero that my baby had dwarfism. The first time they told me, they didn’t know just how severe it would be. I remember going home and all I could think was “He will be small. That’s ok! He will be very small but he will be healthy! He will still live like most children. He will be playing, going to school and doing all the things kids do. I’ll just have to explain to him why he’s small. Healthy is what matters.” And I had peace. Never did I imagine what what’s to come. 
I didn’t even know what RCDP was. I had no idea that when they told me “your baby has dwarfism” that it would mean that he wouldn’t be able to speak, walk, eat, run, ride a bike, make messes and do all the things you picture when you find out you’re going to be a parent. And then I came face to face with RCDP and every single day from the minute I wake up, it’s the battle we fight. 
Let me tell you, while RCDP may take away the ability for my son to talk with me, walk or wrap his precious arms around my neck, it DOES NOT and WILL NOT take away the JOY! It can not effect our beautiful bond. It can’t take away all the love. It can’t take away his sweet, happy and wise spirit. 

Although it has taken the ability for him to form words, every single day when he uses his own special way to communicate to me, he is defeating it. He lets me know how much he loves me with those big brown sparkly eyes, his infectious smile, the way he rams his little head into me (which is his way of hugging) and the sweet noises he makes. He lets me know when he’s hungry, tired or wants to be put down. He is smart enough to find his ways to communicate with me. I just have to be patient, study and listen and it is my greatest honor. 
Knowing him is pure joy. I can honestly say, I didn’t know much about dwarfism before I had Jude. I had NO IDEA there were lethal forms of dwarfism. 

RCDP has taken from me, from us (our Rhizo community) but it has also given us a family, a greater understanding of how precious life is and the most beautiful warriors there are. We just said goodbye to yet another Rhizo warrior. It never get easier. But we are better to have known them and to love them! And they are always in our hearts and forever a part of our lives. Our beautiful Rhizo angles ❤️
On National dwarfism awareness day I am here to say…RCDP, you can not take our joy, our love and our strength. We will continue to fight, to raise awareness, to stick together, to love and to live in joy and HOPE even amongst the pain. 

And to my beautiful son Jude, my sweet baby boy! You are a warrior! You fight harder than I ever could. You never let your limitations in your fragile little body limit the joy in your spirit and the love in your heart. Being your mommy is my greatest privilege. Being loved by you is a dream. I will always fight for you, protect you, hold you and love you. You are my best friend! I will never stop being your voice and working as hard as I can to raise awareness. You’ve got a friend in me, babe ❤️ #dwarfismawareness #HOPEforRCDP #HOPEisEVERYTHING #bravelittlewarrior

Here we are again

Fall and winter have always been my favorite time of year. I love the cool weather, the holidays, the colors of the fall leaves, the white snowy trees, the traditions, the Christmas lights, the parades, tree lightings, the decorating, all the festivities, family all together and really everything about these seasons, as you can see. I never dreamed my favorite time of year would end up being so terrifying for us. Terrifying, you ask? YES terrifying!

As most of you know, along with Jude’s diagnosis (RCDP) comes severe respiratory issues. A common cold for others usually means chicken noodle soup, some medicine and cozy relaxation. A common cold for Jude…well that simply does not exist. Nothing about a cold for him is common. A cold almost always leads to a hospitalization. A cold, flu or any of these respiratory viruses are a VERY serious thing for Jude and all the RCDP babies. 

When it comes to these battles, our reality is pretty harsh and grim. We have had to say goodbye to far to many precious Rhizo babies due to colds, RSV, pneumonia and other viruses. 
Jude is a warrior! He fights like a champ, but just like everyone, sometimes he can get knocked down. And cold and flu season are such a challenge for our baby boy. This season means we don’t go out nearly as much and we spend a lot of time at home. It’s not a fun thing to miss out on so many special things that I wish so much that I could share with my baby. Jude would absolutely love the downtown tree lighting and Christmas parade with his cousins, but having him out in the cold simply cannot happen. We can’t risk his life. We have to keep him as safe as we possibly can. 

During these seasons, I feel like everywhere I go there are coughs and sniffles all around me echoing loud in my ears, sending shivers down my spine, placing fear in my mind and breaking my heart. I’ve never felt so aware of my surroundings. There can never be enough hand sanitizer and washing my hands feels like a constant task. My knuckles literally crack, dry out and bleed from so much sanitizing and washing. 

Every year we try our hardest to avoid sickness and sadly, it always finds a way to creep in and we find ourselves in the hospital scared and fighting yet again. We’ve seen Jude endure some very scary battles. But we always hold on to HOPE and our faith to bring us through. I wish so badly some days that I could put him in a bubble that would protect him from every single little germ and piece of bacteria, but it’s completely impossible. Everyone has germs and bacteria in their homes. We bring it in and there’s just no way to avoid that. 

As you know, the past two years of Jude’s life, Medicaid has refused coverage for Jude’s synagis Vaccine. Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a common respiratory virus that usually causes mild, cold-like symptoms. Most people recover in a week or two, but RSV can be very serious, especially for infants and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia (infection of the lungs) 

Jude has had RSV that has led to both bronchiolitis and pneumonia. Some of the scariest weeks of our entire life. These illnesses are so harsh, painful, scary and exhausting for Jude. It puts us all on our toes. His team of doctors strongly encourage us to get the RSV vaccine for him. It’s obviously not 100% that it will keep him totally well and safe from this virus, but it certainty gives him a better fighting chance and helps protect him better and works as a barrier. 

The Synagis vaccine costs $3,500.00 dollars per shot and he receives seven. Is that not insane?! $3,500.00 dollars for a little syringe of medicine. We have been absolutely blown away, humbled and beyond blessed that the past two years of Medicaid refusing to cover this vaccine, Jude’s amazing tribe…YOU guys have helped us through this. Every single dollar given is far more than appreciated. Every dollar gives Jude a better fighting chance. You guys play such a huge roll in our fight against RCDP. We know we don’t walk this road alone and most days, it’s you guys that hold us up. It’s your encouragement, support and love that strengthens us. Jude is such a blessed little boy to be so loved. You guys have provided every dollar for two years to provide this important and life saving medication for our son. How can I ever say thank you for that? There are simply no words great enough. 

As I said before, his team feels it is vital he receives this vaccine and YOU have made that possible. It’s time to start this vaccine again and we would be more than thankful if you would consider helping us in this fight again. I never like to ask. It’s out of my comfort zone. But here I am, asking if you would consider even a dollar. Thank you for joining our fight, standing in hope and loving our Brave Jude. We love you so much!  #bravelittlewarrior #HOPEforRCDP #judestribe #HOPEisEVERYTHING 
Blessings, 

Hannah (Jude’s momma) 

To send donations, visit Our Crowdrise  

Rhizokids Reunion / Vacation 2017 Update

I can hardly believe it’s already time to start on our journey as we head to the Rhizokids conference. In a week we will be reunited with our Rhizo family and I will be snuggling so many sweet warriors in …

Happy 3rd Birthday!

Jude, 
Three years ago today at 3:06 am, you made your grand entrance into the world and changed our life completely. It was such a scary pregnancy and the labor was so hard and frightening. They kept “preparing me for the worst” and I kept believing as I dreamed for the best. I believed in you before I ever even saw your face. I fell in love with you from the moment I found out I was carrying you. For 9 months I was head over heals in love with someone I had never seen face to face. I loved you with every kick, hiccup and even through the heartburn, bed rest, back pain, sleepless nights and swelling. I knew you. I carried you through trauma and I put myself through pain to fight for you. Doctors wanted to put me first multiple times but for me it was always you. From the first moment of knowing you were mine, nothing was more important than loving and protecting you. My own self no longer mattered. The enemy tried so hard to scare me, steal my joy and break me down and while I was scared at times, the joy I had for you far outweighed it all. I knew you had a purpose and I prayed into that with my whole heart. I remember walking to the delivery room and pacing the halls in labor while saying “Jesus, you have control. Jude is strong and his heart beats. Breathe Jude! Just breathe” Before you came they said you probably wouldn’t cry when you were born because you would need assistance breathing. But you, my boy proved them wrong. You cried out the most incredible cry that sounded like a warrior but also a little baby lamb. There you were! Perfect, tiny, fragile, so soft and absolutely beautiful. A living, breathing miracle before my own eyes and I just had the honor of bringing you into the world. And suddenly, none of the pain mattered. I couldn’t believe how beautiful you were. I still remember the way it felt to hold you the first time. You were so itty bitty, your skin was so soft and warm and the sound of each breath was healing to my heart. The sound of each breath was victory. You fought hard and you entered the world a true warrior. Jude, you have changed my life in the most beautiful ways. While it feels like just yesterday you arrived, it also feels like you’ve been my best friend forever. Sweet baby, I have watched you go through so much and held you through many storms. And yet it’s me who fails to stand strong at times and it’s you who never gets knocked down. You smile through pain and breathe through fear. Even though you have had many hardships, that’s not your story. RCDP is not your story. You’re story is HOPE! Your life is a testimony to the goodness of God. Your strength and bravery is an example to many and your joy is contagious and healing. You have such a beautiful story and The Lord has used your incredible life in such powerful ways. I can’t say I always understand everything and that I don’t ever fail in my faith. But the way you never lose your joy and the way you fight through any battle teaches me so much. It strengthens me faith. You’re daily teaching me lessons. I am so thankful The Lord chose daddy and I to be your parents. You’re our world. We are so proud of you! These past three years watching you, loving you, fighting for you and holding you have been a dream and I can’t wait for many more. Happy Birthday, Brave Warrior! Jude Sullivan peters, you are my perfect miracle. I love you to the moon! 

Miracle Milestone

This is an update I did not expect to make. Today we received news we didn’t expect to hear. Today was an appointment we have been dreading for months and yet today turned out to be a milestone I believe …

Update on our trip to Delaware

Hello everyone, Two more days until we leave for our big trip to Delaware for Jude’s MRI and appointments at AI DuPont Nemours Children’s Hospital. We’ve been waiting for this MRI for quite sometime and pray that it will give …

We are in this together.

I will never forget the first time I read those words (rhizomelic chondrodysplasia punctata) they were written on the back of a doctors business card. I couldn’t even really pronounce them. I was sitting in my hospital bed holding my …

Family

I remember feeling so alone when Jude was first diagnosed. Many other women in our local community had babies around the same time as me but their stories, ultrasounds, births and life with their new babies were 100% different than the journey I was on. I felt like it was hard to connect into a group of moms because when it came down to me talking about my motherhood experiences, no one could understand me the way they understood each other. Now I know every child and every parent is different and no ones life looks identical, that is not what I am saying. 

But while everyone else was losing sleep at night with fussy babies who wanted to nurse, I was losing sleep in uncomfortable hospital chairs and by the sound of alarming monitors. There is nothing harder than jumping in an ambulance with your child and praying for dear life. 
Shortly after Jude was born and officially diagnosed with RCDP, we reached out to online communities hoping to find anyone who knew something about this. We were contacted the day we posted his diagnosis on the Parents of Little People page by multiple parents that had children with RCDP. 

I was bombarded by messages and beautiful photos of other Rhizo kids flooding my inbox. Almost every photo of each child was a huge smile and I heard about all of their joy. 
We felt terrified, confused and alone and then this beautiful community we call our Rhizo family came rushing around us and extended so much love to us when we were strangers to them. 

They didn’t candy coat the situation, they were real and honest with me as they told me how hard I would have to fight for my son. They told me the biggest challenges, warned me about what doctors would tell me and told me all the ins and outs of what an RCDP child deals with daily. They told me what tests to have done, what x-rays and MRI’s to have taken, what doctors to travel to and what therapies to start. 

I felt so overwhelmed by all the information I was receiving but it was what I needed and honestly, these women pulled us out of some really deep gutters with their incredible knowledge that I was able to give to the local doctors who really knew nothing about his diagnosis. 

Then I started hearing from moms who had angel babies and that was really hard for me. I couldn’t stop going to their pages and looking at their perfect faces. I couldn’t understand why. And my heart started aching and missing sweet angels I never even had the privilege of meeting. My heart fell in love with them and although I never got to meet and snuggle all of them, they have become a part of my life and have such a special place in my heart. What was and is so amazing to me is that these families who have been walking in this storm have not stopped fighting RCDP. They do it in honor of their beautiful angels and because they love our kids so much. That is family. Even when it hurts, they don’t stop fighting. And even in their moments of feeling hopeless they don’t let go. I can’t think of many more honorable than these incredible people I get to call my family. 

This is a group none of us would wish to join but we are so incredibly blessed to have. We grieve together, we rejoice together and we fight together. We are in this together. 
#HOPEforRCDP

For better or for worse, in sickness and in health.

I remember the day he vowed to me for better or for worse, in sickness and health. He vowed to hold me, carry me, guide me, provide for me, love me and lead me. 
Hearing him vow in sickness and in health, I would have never dreamed the sickness that would find us would be that of which was diagnosed to our firstborn son. 
This journey we are on together has indeed been the most painful and terrifying. Four letters were spoken to us on one of the happiest days of our life and in that second it felt as if our world was crashing down around us. It felt like someone kicked us in the gut and sucked all the air out of the room. 
I was terrified and the pain was unbearable. And there he was although also beaten down and just as hurt and terrified as me, he somehow still had the ability to be my strength. He found the courage to fight, the faith to believe, the hope to stand on, the tenderness to comfort and the love to heal my breaking heart. 
One of the biggest battles we face on a daily is Jude’s seizures. I daily watch him scoop up Jude and cradle him in his ever so loving arms with tears streaming down his face and I know it’s the safest place Jude could be. I watch Jude smile at him when the seizure ends and I think it’s his way of saying “don’t worry daddy, I’m ok” 

And at the end of these terrible episodes, I see both of their joy return as their bond and love for one another can heal their hurts. 
There are times where this journey has torn me to shreds and sucked my energy away. But he somehow always has the ability to pick me up. It doesn’t even always have to be with his words or his prayers. But his gentle loving spirit and the strength he carries for all of us stands me up on me feet again. 
I knew when I married him that he would take care of me. But I didn’t realize he would carry me through a storm so harsh. I didn’t know one could be so strong amongst their own pain. He’s a strong shelter in the storm. God knew exactly what he was doing when he gave him to me.
His love for Jesus, love for his family, passion for worship, hardworking provision, encouragement, gentle spirit, silly humor, beautiful looks 😏 and unwavering faith are just a few of the things I love so much. 
I’m so blessed to hold his hand on this journey. 

Jude is a blessed little boy to have him as his daddy. Sull, you’re truly a hero to me and your Jude bear ❤️ My vow to love you forever is the easiest promise I have ever made. I know it’s not our anniversary or your birthday. But I want you to know I celebrate everyday with you. I have posted countless blogs about Jude and our life together. I like to write about the things that mean most to me and you mean the world to me Sull. You’re our anchor in the storm and bring bring so much joy to our life. The Lord truly uses you in a million beautiful ways to lead and care for your family. I’m so proud of you. 
And to end this mushy post on a silly note for you…
As Buddy the Elf would say…

“I’m in love, I’m in love and I don’t care who knows it.” ❤️😘😂