Totally short update but that's how we roll sometimes :)
God is so good!
Things have been going great at the hospital. Anton's leg is not hurting him anymore which is great but he still isn't moving it normally. his PICC line is working great which is amazing news. we will change the PICC line dressing on the 17th and as long as it still working we will get to go home and finish out another week of IV antibiotics at home. Kenya spent the night at the hospital on Saturday night we had a super fun sleepover with her. Judah might get to come tonight and stay we shall see. So hopefully we will be going home in the next few days. I will keep you all updated. thanks for praying for our boy.
The only thing they found on the mri was Anton's lymph nodes right around his hip are very swollen. They are hoping with a round of antibiotics the swelling will go down and his leg will stop hurting. His leg was hurting him a lot today so they changed some of his pain meds hoping it would help.
Anton's iron was low so he got a blood transfusion yesterday. About an hour into it he spiked a high fever and they weren't sure if it was from the transfusion or infection. They gave him ibuprofen and his temperature came down pretty quickly. They finished the transfusion and he did great. They wanted the iron in his blood to be at a 12 and it was 7 when they started today it was at 11 so that is great. They will recent his levels on Monday to make sure they stayed up over the weekend so hopefully he will just need one transfusion.
Despite being in the hospital and despite Anton being in pain his joyful attitude continues to amaze me. I sure do love this son of mine!
We just back to our room and everything went great. He does not have an infection in his hip which is awesome but now we are at square one on trying to figure out where his pain is coming from.
It is a crazy long story but I will give you the short version for now.
Anton's left leg had been hurting him for a few weeks but I just thought it was related to his EB and didn't think much of it. Well I took him for his final follow up appointment for his thumb and I told his doctor what was going on. She checked him out andandand was very concerned. He wasn't moving his leg like he normally does and he was in a lot of pain. She was worried about him having an infection in his hip joint and admitted him to the hospital a few minutes later. All of that happened yesterday.
The only way to know for sure what is going on is to do an mri under anesthesia because his xray looked fine. He is having the mri done right and we are hoping to have some answers soon.
I will keep y'all updated as I hear more.
Anton had a repeat swallow study done today and it went great. He can now have ANYTHING he wants by mouth as long as it is thicker than honey. We are so excited and so thankful for how far Anton has come.
Kenya and Judah are both playing indoor soccer and Papa T is their coach. They both had their first games last Saturday and we had so much fun watching them!
Anton had 2 corneal abrasions in June and it was AWFUL. We took him to the eye doctor for the first time ever which went pretty good. Anton wouldn't open his eyes but the doctor was super nice and treats several EB kids in the area. We have a good plan in place so hopefully he wont get anymore corneal abrasions.
Happy Monday Y'all! :)