July 25, 2013

Things have been a little crazy since we got home from the hospital. Judah got sick the day after we got home with a virus and an ear infection, once he got better Kenya got a high fever for 2 days then Anton got a fever for 3 days. We were worried about him having an infection in his blood since he has a PICC line but thankfully the blood culture came back normal! Anton will get a blood transfusion tomorrow because his iron is low and then they will take his PICC line out.

Totally short update but that's how we roll sometimes :)

God is so good! 

We are home!

I totally thought I posted that we were home but I guess not... We got to come home on the 17th and have LOVED being home. Anton still has his picc line and I give him iv antibiotics through it twice a day, he is also getting an antibiotic through his g-tube 3 times a day.

Today for the first time in over a month Anton put his left leg down flat on the bed. For the past month if we laid him on his back he jerks up his left leg because it hurt to straighten it so I was shocked when he laid it flat! I am so glad he is making progress even if it is slow.

The day after we got home from the hospital Judah got sick with a virus and an ear infection, he seems to be on the mend though so that is good. Today Kenya spiked a fever of 103 degrees F. She was miserable but once her fever came down she was back to her happy little self. Then Anton got a fever of 101.4 degrees F. I called his doctor and they had is go to the hospital for blood work. They want to make sure he doesn't have an infection in his blood which he is at higher risk for with the picc line. we are home now just waiting for the results. I am hoping he just has whatever Kenya and Judah have and that it isn't in infection. I will let y'all know once we get the results.

Thanks!

July 15, 2013

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.

Hey 

July 12, 2013

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!

Anton is in the hospital and an update...

UPDATE 

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.

Swallow Study Update

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! :)