Cloves convention 2016

Cloves Convention 2016

The cloves conference is finally almost here! We are so excited! The cloves conference is being held at Boston Children Hospital. There are about 30 families attending this year…which is the most they have had so far. Considering that there are only about 150 known cases in the world 30 families is quite a lot! We can’t wait to meet these families in person! I am friends on Facebook with a lot of them but to actually talk in person and see and meet them will be so cool! I am so thankful that they have this and that families are willing to help donate and put this together so that we can be together as a little cloves family.  We are headed to NJ as I am writing this blog post.  The boys are finally asleep in the back and I can hear Noah’s snoring.  We  head to Boston tomorrow and the convention is on Saturday. It’s an all day event.  

Noah had a recent sleep study done at UVA children’s hospital in Charlottesville VA. He did great!! He was such a trooper sleeping through the night with all those wires on his head. I’ve never seen so many wires before in my life.  We did the sleep study to check and see if Noah is able to sleep at night without the cpap machine.  The results came back today and he NO longer needs the cpap machine! Praise the Lord! He outgrew his sleep apnea and no longer has any obstructions while he sleeps. We are so happy and thankful for this! God is good! 

After the convention I am headed to CHOP for Noahs MRI scheduled for Monday. We don’t have the time of his mri yet but we known it’s sometime Monday. We will most likely have to stay overnight at the hospital and then we will be meeting with out oncologist dr and reviewing Noahs MRI. It seems that everytime right before Noahs MRI I get really worried and anxious. I start to panic and worry that something is wrong with him or that the medicine is not working and the lymphangiomas are growing again. We won’t know until he gets the MRI but I would just ask that you all pray for me! I feel like there are times when I loose my faith! I am not trusting that God who gave me this sweet baby boy will take care of him. That God loves Noah more then I could ever love him.  I know that I will worry about Noah for the rest of my life…I will worry about Ethan as well! That’s my job as a mom but I can’t let the worry make me loose my faith. I need to take my worries and turn them into prayers! 

Noah is doing really well! He is 7 months old. I forgot to take his 7 month old pictures because life has been a little crazy.  Noah is rolling all over the place, sitting on his own and starting to pull up into crawling position. Andrew thinks he will be crawling very soon! Ah! Life will definitely get even crazier then! Haha Noah loves to eat baby food, oatmeal and teething crackers. He have 2 bottom teeth. Noah loves to laugh and smile and talk. He enjoys watching his brother run around.  we are having a hard time with getting Noah to take a bottle and have stared gtube feeding again just to make sure he is getting enough food.  Please pray that Noah will want to take a bottle eventually and not need to use his gtube….but we are thankful he has it for now. We will keep you all updated on how his MRI goes. Thank you for continual prayers for our sweet boy! We love you all and are thankful you are on this journey with us!