How has it already been 7 years since Noah was born….some days it feels like forever ago and then every birthday as I look at the old memories and photos on facebook, I am reminded that it wasn’t that long ago…that the God who got us through those months of unknowns is still the God today who is continuing to help us along this path of unknowns as Noah grows each year.
Tonight I took some time to read over some of the old posts on this blog that I created before Noah was born….and as I sat in tears reliving the fear, pain, anxiety, stress, relief, comfort, love and so on, I feel some guilt that my faith is not how it was back then. I am reminded how easy it is to go through the motions of life and not fully rely on God. To not put my trust fully in Him when I do feel anxiety and fear and let those emotions take over my body. Before Noah was born when I started writing this blog, it was honestly only my faith that got me through and so tonight I am thankful for this time to be reminded of how good God is, and how amazing and wonderful his love is for us. When I look at Noah I just see God’s love and faithfulness. I am thankful for these reminders and pray that I will continue to remember.
Now for the update on Noah since many of you have asked that I update on this blog. ( I do want to apologize for the silence the last few years. I am thankful that so many of you continue to lift us up in prayers and ask about Noah). Noah is doing really well. He is in 1st grade at Faith Christian School which is not too far from our house. I don’t want to brag on Noah too much but he is very smart and has amazing handwriting. He is doing very well in school and continues to light up the hallways with his smile and sweet personality. I think he constantly amazes people when they see him write with his big hand and his handwriting is just beautiful. Even after another hand surgery this summer to shut down the growth plates in his hand, he worked hard…lots of hand therapy with an amazing hand therapist who pushed him in all the right ways to regain his strength and dexterity in his hand again. We continue to go up to CHOP (Children’s Hospital of Philadelphia) once a year to meet with the Vascular Malformation Team. This team is made up of lots of doctors who oversee Noah’s care. These doctors include Dermatology, Interventional Radiology, Oncology, and Orthopedics. This team specializes and sees children with CLOVES syndrome. We also continue to go to UVA hospital every 6 weeks to get bloodwork, ultrasounds, and to see our Oncologist. This oncologist works with our oncologist at CHOP which is amazing because we no longer have to go up to Boston Children’s Hospital anymore. (Less travel=YAY! 🙂
Noah is now on a new medicine called Alpelisib which studies have shown to be very successful when treating CLOVES. The use of this medicine wad discovered in France and then was used on a trial basis in the United States. Noah was one of 13 kids with CLOVES to try this new medicine. The medicine is now FDA approved and more children are using it now in the US. Noah has been on this medicine for the last 2 years….and even though it doesn’t seem that the medicine is shrinking the growths inside of him, they are keeping the growths stable, We are also working on finding the right dose for Noah. Thankfully Noah does not have any side effects from this medicine and is able to use it without a problem.
There is nothing scheduled for Noah at this time in terms of surgeries or procedures, and for that we are super thankful. We continue to go to UVA and CHOP for routine doctor appointments and the routine MRI that is needed to keep an eye on the different areas in Noah’s body. We are so thankful for the health Noah has and how well he is doing. I am excited to be back on this blog updating you all and will try my best to do better when it comes to updating.
THANK YOU ALL for your continued love and support!
noahpsalm91 