Bruised legs and sore bottoms would pretty much sum up the last month of Noah’s life. It has been a pretty rough month in that respect. Noah’s legs are super bruised, sore and swollen. They look terrible…and they actually feel terrible too. He also has a sore bottom from where the doctor worked on his sciatic vein. Thankfully that has recently improved a ton and he is able to sit a bit more without so much pain. So yea…it all seems pretty bad but actually the doctor at Boston thinks Noah is doing great. We were a bit concerned so we sent him lots of pictures of Noah’s legs and he said they looked really good considering all the stuff that he had done to them. We are super thankful for that and it makes us feel a little better. Noah is able to still able to do things like run around, swim, ride his bike and play with friends so that is all a very big blessing! The doctor told us he would only be concerned if Noah wasn’t able to do all those things so again we are thankful he is able to still enjoy his summer,
The MRI results that we got done in Boston last month showed that his spine looks great which is a huge blessing…that is what we were concerned about with him and the main reason for the MRI. But of course Noah being Noah there was another concern. There seems to be some kind of tissue/growth on or by his lung. They aren’t sure exactly what it is at the moment but they do know that it isn’t causing any problems. The doctor will want to work on that tho but he said we could wait until next summer. PRAISE THE LORD for that! I was super worried we would have to go back to Boston again this year for another procedure. We are starting to realize more and more that Noah’s CLOVES syndrome mainly affects his vascular system which is why he needs to get lots of different procedures done in Boston by a very specialized doctor. I do feel like we left Boston this last time understanding CLOVES more and how it works and affects Noah specifically.
Now onto the next procedure…We leave in one week for Philly. We are scheduled for Noah’s hand surgery on July 23rd. Not sure yet what time. The doctor at CHOP is going to remove the growth plates in his middle finger on his left hand. He is also going to do half of his ring finger as well. He really wanted to make sure that this would work for Noah before doing all his fingers and putting him through so much all at once. It is a very long intense procedure that he said would take about 5-6 hours. The doctor is also going to debulk/take out the fluid in the middle finger as well. Noah will have to spend at least one night in the hospital. We are praying it will only be one night but it will really depend on his pain level and how he is feeling. We wish he didn’t have to go through another big procedure this summer BUT we also know we have to do this hand surgery now because his hand is growing very fast right now. We are happy that the doctor only wants to do one and a half fingers right now because we do want to make sure it works before committing to doing all his fingers. There is always the risk of scar tissue and loosing some of his dexterity but Andrew and I really feel like we want to give it a shot for Noah’s sake. We would love for him to be able to grow into his hands someday. We would appreciate prayers for this upcoming surgery. We are all a bit nervous how it will affect Noah….we haven’t talked with him about it yet and we just want to find the right time/right words to talk to him about it. So thankful that he know that we can pray to God for everything and that we take our comfort in God! It really strengthens my faith to hear him talk about praying to God. I also am asking for prayers as I will be traveling without Andrew for this adventure. Andrew really needs to work and we are saving a week of his vacation for a beach trip in September that we all REALLY NEED! 🙂 I am really not too scared to go alone….BUT I am a bit nervous how I will be with Noah before and after his surgery. Andrew is our ROCK when it comes to the hospital so not having him there may be a bit difficult. I am super thankful for my Oma who is here in Virginia this week helping us get ready for this trip and making the trip to NJ with me and the boys. I am also thankful for family and friends who will be coming with me to Philly to help with Silas and be of moral support for me. 🙂 THANK YOU SARAH COOK ❤ Also thankful for church family who open their home to us in Philly while we are there. GOD IS GOOD and ALWAYS PROVIDES! So I go back to the title of this blog post…it has been a rough month in some ways BUT it has also been an awesome month. We have had a blast at the pool and lake with friends, the boys have all been healthy which has been such a great blessing, my anxiety/fear hasn’t ruled my daily life, and we have spent tons of time with friends. Noah was even able to attend our VBS this past week. It has truly been a good month…and that is ALL GOD. The song Scars by I am They has been playing a ton while I am in the car….and I just think it is God’s way of helping me remember of his goodness to Noah and myself. We look at Noah’s scars and we remember how much God has brought us through and how far we have come. The scars remind us of so much hurt and pain but also the joy of being on the other side. I know there will be so many more scars for Noah but I am thankful for those reminders that God is good and he is taking care of all of us. Here is part of the song I would love to share with you all:
‘Cause without them I wouldn’t know your heart
And I know they’ll always tell of who you are
So forever I am thankful for the scars
With the strength of your faithfulness
And I’m not who I was before
No, I don’t have to fear anymore
If you haven’t heard this song you need to look it up!!!!
Here are a few pictures of our summer fun this last month! 🙂
I will keep you all updated on Noah when he has his hand surgery. THANK YOU ALL FOR YOUR CONSTANT LOVE AND SUPPORT. We feel your prayers all the time and we see so many blessings around us.
Love the Hankos
noahpsalm91 