Hope…it’s in my genes…NO my hope is in GOD!

Hope…it’s in my genes=that is the saying you come across when you are looking up CLOVES syndrome or when you visit the CLOVES website. On Thursday afternoon I got the call we thought we would never get…Noah’s diagnosis. Noah has CLOVES syndrome.

Summary of CLOVES syndrome (CS) is a recently described rare disorder characterized by tissue overgrowth and complex vascular anomalies. CLOVES stands for congenital lipomatous (fatty) overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies.

It is so rare that their are only about 150 cases in the whole world! AHH! pretty scary stuff! After getting off the phone with the doctor I started to cry and i just felt really numb! I started to feel bad for myself and for Noah! What did we do to deserve this? WHY Noah? …I know that the diagnosis doesn’t change anything with his care…and this is actually what we thought it was even back when he was still inside of me…I am not surprised by this outcome but to hear it out loud just makes it so real…so real and scary! Scary because we don’t know what the future holds for Noah…there isn’t enough research or cases to know what will happen…which is scary but also maybe a blessing because we don’t know how long we will be on this earth…only God knows! I have been reciting over and over in my head the verses from Psalm 139:13-14 “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Noah is beautiful just the way he is! A diagnosis is and should not change that! He is still made in the image of God just like all children with special needs! I think the devil wants me to feel like God has abandoned me with this child…that I am alone and I won’t be able to handle it BUT I know those are just lies…God gave us Noah for a reason! A very special reason! I love all of the things that make him different!

We have started to reach out and talk to other families with children with CLOVES and it has really been very encouraging and a blessing! The coolest part is that the woman who founded the CLOVES foundation lives only an hour from us…I mean how cool is that! Talk about how the Lord provides! We also are hoping to go to the CLOVES conference in the summer at Boston Children’s Hospital.  So despite the difficult road ahead…there are lights…lights of hope! I am excited to see how the Lord is going to use Noah and his diagnosis to help and encourage other people! TO GOD BE THE GLORY! There will still be hard days…dark days but there will also be days of hope and light! So hope it’s in our genes…yea but ULTIMATELY Hope is in God!

Thank you all for walking with us on this journey…we will continue to keep you updated as we find out more about this diagnosis and continue traveling to and from CHOP for visits!! Here are some good websites you can look up and get educated…and please spread the word so that we can get more people familiarized with this very rare syndrome!

http://www.Clovesfoundation.org

http://www.rarediseases.org

http://www.clovessyndrome.org

Praises amidst a rough week!

Wow whee…it was a rough week BUT through this rough week we have many praises! We were so thankful to have family to help us when both Ethan and Noah got sick. My parents were right there to take Ethan for us when he was sick, so that we could try to protect Noah…and then when Noah got sick, my mom was there to calm me down and help me take good care of him.  (I was a bit of a crazy panic psycho mama at first) And then when I was sick, my parents were able to help me take care of the boys so I didn’t have to do it alone and I was able to get some rest.  So even tho this week felt like we were getting attacked from every which way, God still took care of us.  He allowed us to get sick at the best place possible with the most help! We all survived and now we can kinda look back on it and laugh at the memories we made…well almost laugh…maybe in a few more weeks! 🙂

Both Noah and Ethan are doing well and we are back home! It is very nice to be home again and get back into our routine without being sick! While we were in NJ we had a few doctor appointments with CHOP.  We were able to make all of the scheduled appointments (except Noah’s blood work because I was too sick to make that appt) even with all the craziness of the week.  Our first appointment was with Dermatology which went really well…the doctor looked at Noah’s legs and was shocked that they looked so good.  The dark purple coloring had faded and she could not explain it.  She was like, “Wow that doesn’t usually happen…usually they get worse…must be the medicine Noah’s on…it must be working.” Andrew and I looked at each other and smiled because we knew exactly who is healing Noah’s legs….NOT the medicine…GOD! Noah’s legs had started fading before he was on the medicine.  It was so cool to hear that the doctor couldn’t explain it.  Then we met with General Surgery and Cardiology.  Everything was good with surgery, they put in a new G-tube and said he looked good. Cardiology did an echo on Noah’s heart and that came back great…his heart looks good and there are no problems…PRAISE THE LORD! (we were a little nervous about that one) The following week we met with the Ear, Nose and Throat doctor and he also was shocked to see how well Noah looked! They looked down his airways again to make sure they were clear and they looked beautiful! The doctor said it was like looking down a normal baby’s airway…NO PROBLEMS AT ALL! PRAISE THE LORD! The doctor said that he thought the lymphangioma in Noah’s throat looked and felt like it was shrinking! SUCH GOOD NEWS! We are so excited and thankful and happy! We don’t have to see any of these doctors again for another 6 months which is also good news! So despite the rough week….we had a great week with so many praises! I think it’s so cool how Noah is blowing all the doctors away with how well he is doing and how good he looks and I can’t help but get teared up because I know it is all GOD! The medicine Lord willing is working but it is GOD! God can heal Noah without the medicine if He wanted too! It is just so cool…God is using Noah to show His power and strength! GOD IS GOOD!

Our next appointments are in March/April.  We will meet with Pulmonary and Anesthesia mid march and then Oncology and the Vascular Overgrowth Doctor at the end of March/beginning of April. The big appointment is with Oncology where Noah will have to stay in the hospital overnight and get an MRI of his body to see whether or not the medicine is working! He will have to get incubated in order to stay still while they do the MRI….kinda scary to see that but it is necessary! Please continue to pray for our sweet boy! Pray that the medicine is working and that the lymphangiomas are shrinking inside his body! Pray for Andrew and I as we travel back and forth to CHOP in the coming months. Pray for health and a good week for us! We are so appreciative of all the prayers and support! YOU ALL ROCK! WE LOVE YOU! Please keep the prayers coming!

Take Heart

This week has been a struggle. Ethan had the flu Saturday night. I left to go back to work Sunday. Melinda got sick (and Ethan got sick again) Wednesday night. Noah started throwing up this morning.

Melinda will be taking Noah to the hospital this afternoon because he keeps throwing up. The team at CHOP has been made aware of the situation. My mom will be watching Ethan.

The following is particularly apt prayer for me at this moment.

Psalm 77

To the choirmaster: according to Jeduthun. A Psalm of Asaph.

 I cry aloud to God,
    aloud to God, and he will hear me.
² In the day of my trouble I seek the Lord;
    in the night my hand is stretched out without wearying;
    my soul refuses to be comforted.
³ When I remember God, I moan;
    when I meditate, my spirit faints. Selah

⁴ You hold my eyelids open;
    I am so troubled that I cannot speak.
⁵ I consider the days of old,
    the years long ago.
⁶ I said, “Let me remember my song in the night;
    let me meditate in my heart.”
    Then my spirit made a diligent search:
⁷ “Will the Lord spurn forever,
    and never again be favorable?
⁸ Has his steadfast love forever ceased?
    Are his promises at an end for all time?
⁹ Has God forgotten to be gracious?
    Has he in anger shut up his compassion?” Selah

¹⁰ Then I said, “I will appeal to this,
    to the years of the right hand of the Most High.”

¹¹ I will remember the deeds of the Lord;
    yes, I will remember your wonders of old.
¹² I will ponder all your work,
    and meditate on your mighty deeds.
¹³ Your way, O God, is holy.
    What god is great like our God?
¹⁴ You are the God who works wonders;
    you have made known your might among the peoples.
¹⁵ You with your arm redeemed your people,
    the children of Jacob and Joseph. Selah

¹⁶ When the waters saw you, O God,
    when the waters saw you, they were afraid;
    indeed, the deep trembled.
¹⁷ The clouds poured out water;
    the skies gave forth thunder;
    your arrows flashed on every side.
¹⁸ The crash of your thunder was in the whirlwind;
    your lightnings lighted up the world;
    the earth trembled and shook.
¹⁹ Your way was through the sea,
    your path through the great waters;
    yet your footprints were unseen.
²⁰ You led your people like a flock
    by the hand of Moses and Aaron.

I have been asking myself vs 9 from this Psalm all week. “Has God forgotten to be gracious? Has he in anger shut up his compassion?”

I need to remember this more often: Jesus said in John 16:33 “…In this world you will have trouble. BUT TAKE HEART! I HAVE OVERCOME THE WORLD.” 

Please pray for Noah, that he would heal quickly.

Pray for wisdom for the doctors as they treat Noah.

Please pray for Melinda, that she would remain calm in the face of this most recent stressful situation. Please pray that she would be patient with the doctors and nurses as Noah’s unique care situation needs to be explained and addressed.

Pray that we take heart in what God has overcome.

Enjoying life at home :)

As you can see from the featured image Noah is very much enjoying life at home! We have all started to really enjoy it…maybe not every moment but as a whole we are all enjoying being home! We have kinda got into a routine that seems to be working well…Andrew is super dad when he comes home from work at night and also before he leaves for work in the morning.  We are getting a ton of help from our church family, neighbors and friends which has really been a blessing to us! God is good!

We head to New Jersey tomorrow and then to CHOP on Friday for Noah’s doctor appointments.  He has 3 appointments Friday…Dermatology, Cardiology and Surgery.  The surgery is for his G-tube.  This is standard procedure to have the first G-tube change to be in the operating room done by surgery just to make sure that it is healing well.  After they change it out the first time, Andrew and I will be able to do the changes at home. (kinda scary to do that but like everything we have learned…just takes practice and doing it a couple of times) Dermatology and Cardiology are follow up appointments to check his skin and heart again and make sure everything is okay.  We then have another appointment the following Thursday with Ear, nose and throat doctors.  The doctors  will look down Noah’s airways again to make sure that they are clear and nothing is abstracting.  We pray that everything with all the follow up appointments will be okay…it’s a little scary to go…and it makes me nervous to think that something may be wrong but this is where we need to not be slaves to fear and trust in God who is fully in control.  (again easier said then done) God has done so much already and I need to have faith that he will continue to take care of Noah.

Please pray for us as we travel tomorrow…pray that all the appointments go well and that Noah is doing great…He seems to be doing awesome…he is such a cutie…he loves to smile and coo and watch his brother Ethan run around the house.  Noah also loves to nurse and be held. He is a real snuggle bug! Please also continue to pray for the other babies we met in the NICU who really need our prayers for healing…pray for their families!

I will update you all on how his appointments go and again thanks for all the help, prayers, support and encouragement! We are just so thankful for you all! GOD IS GOOD!