Today we had a goal…fit as much into our Children’s Hospital visit as possible! Why not right? We started our morning at 7. I know that doesn’t sound early to some of you but to us it is. We were on the road by 8:15 which his normally when we roll out of bed. Our hope was to have plenty of time to get through traffic and still get to the hospital by 9:30. Traffic wasn’t too bad thankfully. There’s only so much you can do to avoid sitting in a little bumper to bumper on 51 during rush hour. We made it though…even a little early…and found a close parking spot in the parking garage. Score!
By 9:30 I was checking Bub and Zim in at the Sibling Center and headed up to check Monkey in for his appointments. Our first for the day…the dental office. A few weeks ago I took all the boys in to the pediatric dentist. What an experience that was! (I’ll save that story for another post.) I wanted to get a second opinion on the work being recommended for Monkey. The pediatric dentist we’d gone to was telling me that he’d need to be sedated in order to put venire caps on his two front teeth. Unfortunately, I think from him being on Methotrexate, he had developed awful decay between is top front teeth. Seeing how they were recommending sedation I knew the only place I’d get that done was at Children’s Hospital.
Monkey wasn’t crazy about having to get into the dental chair. Some trips down he does great and is a real trooper. Other days, like today, are more of a struggle. This is where bribes often come into play. After promising that he could pick a snack from our bag he finally agreed to sit in the chair. The dentist was very quick and agreed that the caps were the way to go. What made me happy was to hear her say that there were no other cavities in his mouth. What made me even happier was when she told me that she’s pretty sure she could do the procedure with just a little relaxing medication (that he’d take on the morning of) and some happy gas. That means that he wouldn’t have to be completely sedated and that made this momma very happy. Monkey hopped up after his exam, picked a snack, two stickers and we were on our way to our next appointment. Rheumatology.
Right now we are on an every three month schedule. I was so excited that going into this appointment we were pain and symptom free….well, up until this past weekend. Go figure, right? The past five or six days Monkey has been limping and complaining that his leg was hurting again. Not cool. I’ve been keeping an eye on it and noticed it was a little swollen but nothing terrible so we’ve been treating it with Motrin, warm baths and his warm rice bag. After his exam with his doctor she agreed that there was some fluid there. She advised that I keep an eye on it and let her know if nothing has changed in a week. What then?
~If the pain persists and the swelling stays we will most likely talk about having another joint injection in that knee.
~No change of medications or dosage at this point since there is only one joint having an issue right now.
~If the problem persists after in injection or more joints flare we will discuss adding Enbrel or Humira along with the MTX.
It was nice that she discussed all the options with me and clarified why we’d go certain routes. I wasn’t overwhelmed or confused because thankfully I knew what was possibly ahead for Monkey’s treatment. It’s so important to educate yourself and talk with other families who have experienced the same illnesses if you can. Having a realistic understanding of your child’s illness/disease is vital. Knowing that things can change in a moment and knowing what may be next in their treatment helps you make calm and educated decisions.
Next we were of to Monkey’s least favorite parts of our visits…the lab. I try very hard to distract him so he doesn’t realize what’s going on. Thankfully today there was a volunteer with a beautiful therapy dog. Monkey loved petting Jackson the golden retriever. He sat next to him and rubbed his belly along with four other patients and really enjoyed watching Jackson do tricks. Soon they called us back and that’s when he knew what was coming. He tried to convince me that we didn’t need to go and that we could go home. Sorry, buddy. As soon as we walked into the room he burst into tears. I felt so bad for him. He always cries but today was worse…he screamed. I don’t know if the person taking his blood today wasn’t as good as the ones we’ve had in the past but he was NOT happy. I mean, the poor kid was crying, screaming, drooling and shaking. Yeah, not so fun. I hate so much that he has to do this but I know it’s necessary to make sure that the medications are harming him in ways we can’t see.
Thankfully Jackson the therapy dog was still out in the waiting area when we were finished. A few snuggles and kisses later and we were good to go. Of course on our way out we had to stop in the gift stop for his treat. We’ve pretty much eliminated almost all candy out of the boys’ diet since our last dental visit so the fact that he got to pick some Mike & Ikes today was a big deal. It’s nice that a little candy can make him feel a bit better about all that he went through today.
Now we are home and he’s happily playing Lego Batman on the XBox like nothing happened. For now we’ll just keep an eye on him and hope that his limp goes away and he’s feeling better so we don’t have to go back until March for his next routine check up. We never truly know what to expect when we go on these visit but one thing I do know is that he is getting the best care possible. Something we are so very thankful for!