Noah is not letting anything get him down these days even with a big cast on his arm. Noah’s hand surgery went really well. We decided to pick a green cast for him to represent CLOVES syndrome…but it reminds us more of the hulk (superhero) which is quite fitting because Noah is super strong. We did end up spending the night in the hospital tho because Noah didn’t do very well after the anesthesia and heavy pain medicine. The mixture was making him too relaxed which caused his oxygen level to go way down. It was very scary to see but once we made it through the night Noah was doing so much better! It was so hard to see him wake up in the middle of the night in so much pain and frustration from the cast. It broke my heart! We didn’t want to give Noah any of the heavy pain medicines so we did round the clock tylenol and ibuprofen which seemed to help.
Noah has to keep the cast on for about 4 weeks. We are scheduled to go up to Philly again at the beginning of March to see the hand doctor. Praying that we can get rid of the cast then. We also have a MRI scheduled to check on his lymphangiomas in his body and also see the cardiologist to check on his heart to make sure it is fine. It makes me tired to think we have to go again for another few days but it will be nice to see our family and friends in New Jersey again….and this is just part of our normal lives.
We have had a rough week adjusting back to our life here in Roanoke. It is crazy that we were only gone for a week but boy coming back is rough. We are all out of wack! The boys both have cold/coughs and Noah developed a weird small lump on his back. We actually brought him to the ER earlier this week to get an ultrasound to see what it was… I was very worried, nervous and helpless. We got the ultrasound back which showed that it was a lymphoma that isn’t serious at all. We wrote to our CLOVES families asking them if they had these and sure enough they did…they randomly appear but as long as they are not red, hot or running a high fever it is nothing to worry about. It should go away in a few weeks. It does give him so pain and discomfort at times so that is hard to watch but overall with tylenol he seems to be fine. We just feel at times like it is neverending but we need to be reminded that God is faithful and that He will lead us through all of this…that sometimes the bad times bring us closer to God! So for that I am very thankful for…I have been reminded everyday that God is with us and there is always something to be thankful for.
THANK YOU FOR ALL YOUR PRAYERS AND SUPPORT! We are so thankful for you all and for the love we feel from you all! Please continue to pray for health as we get ready for Noah’s MRI at the beginning of March. Pray for strength as we face the unknowns of CLOVES syndrome. Here are some pictures of Noah and his lovely green cast: Oh and February 28th is rare disease day!! 🙂
noahpsalm91 