Today was a family day…not a typical family day but we take them however they come!
First we had the pleasure of heading up to see Trica at Patricia June Photography. Trica is doing an amazing series called “Little Heroes” and asked if she could feature Monkey. Not only were we being offered an opportunity to get some amazing pictures but also the opportunity to help raise awareness for Juvenile Arthritis…how could I say no?! Tricia is such a gifted photographer. You can clearly see from her work that she is very talented but what you will find out in person is that she makes you feel so welcome and at ease from the moment you walk into her studio. The boys warmed right up to her like she was a friend from long ago. I honestly expected family photos to be a bit of a challenge but we were in and out so quickly and it was enjoyable and fun. Thank you SO much, Tricia, for your kindness, your selflessness and for sharing your gift with us. I know you will be blessed for what you are doing for these families!
After we loaded back up in the van we headed over to Children’s Hospital for Monkey’s follow-up appointment at the rheumatologists. Even though he had his arthrocentisis and steroid injection on the 1st of the month he was already limping and complaining of pain. We got him weighed and measured (30 lbs and 3’ 3”) then waited in our room to see Dr. Poff. I expressed my concerns to her and of course asked a million questions. Dr. Poff was so helpful in answering me honestly and putting my mind at ease. After she had completed her exam Dr. Kietz came in to discuss what was going on. He carefully examined all of Monkeys joints. You could tell that he was doing a detailed comparison and taking his time to see where there might be any fluid/inflammation. I appreciate so much that he does this…he takes so much time to ensure that we don’t miss anything. He commented that Monkey’s ankles felt a little ‘spongy’ which could indicate excess fluid and went on to explain that we would have to do some further testing to see where there was fluid/inflammation before we started talking more in-depth regarding medication and treatment.
Dr. Kietz then took Monkey out in the hall to watch him walk. By the time they’d reached the end of the hallway they were racing. My little Monkey just LOVES to race Dr. Kietz! When they finally returned (they had quite a little adventure through different hallways and doors) we sat down to talk. Thankfully they suggested that we try to us a sonogram of his joints to determine where the fluid/inflammation is. Doing an ultrasound will allow Monkey to be awake where doing an MRI again would require him to be sedated via IV which we’d like to avoid if possible. After we schedule the u/s and determine the extent of the problem we’ll be able to talk more about where we go from here. Dr. Kietz did however mention that we will most likely talk about getting started on Methotrexate. This is a common medication often administered via injection used in many JA patients. I have been scared of this medication for a while but I have been doing a lot of research and talking to many other JA mom’s about it and I feel a little more comfortable now. Bottom line really is we have to do what we have to do to help Monkey feel better and prevent this disease from affecting more joints.
I have to mention while I’m here that we found yet another amazing thing about Children’s Hospital. They have an area called the Lemieux Sibling Center. This is a very special (and fun) place set up for siblings of those who are patients at Children’s. Today was the first day we made use of it and Zim and Bubba were SO pleased! Ed took them down and was told that he was not allowed to stay with them. He admitted later he was a little bummed about because he really was looking forward to playing air hockey with the boys! Seriously though, it was great because it meant that Ed was able to come back up and be in the room with us when Dr. Kietz was talking to us. When we picked them up later they said over and over again how much fun they had and asked that when we go back can they PLEASE go back in that ‘awesome room!” Thank you so much to The Mario Lemieux Foundation for creating such a great place for the kiddos!
On our way home we made a few stops one of which was to pick up a special gift for Monkey. You see, last night was a big night for him…it was his first night without his binkie! It wasn’t an easy night by any means but I’m so proud of him for being a big boy and getting through. To help him sleep at night now that he doesn’t have that comfort we told him that he could get his very own Dream Light. Both Zim and Bub have Turtles so Monkey is VERY happy to have one of his own. He keeps saying to me, “Momma, I wub my dweam-white SOOOOO much!” Ah, makes this Momma very happy!