Waiting

Yesterday was definitely one of our longest appointments at Tufts since we started going there four years ago this month. Jokingly, I told my husband, "We should buy an apartment in Boston to save on gas and parking!"

Hm. Something to consider! ;o)

We got there at 9:30 a.m. for JJ's ultrasounds and x-rays. JJ did a remarkable job! He had to lay completely still for 1.5 hours as they did ultrasounds of his hips, elbows and wrists. How many four-year-old boys do you know who can lay completely still and not move for that long? It took some encouragement from me, but he did it. And, was very happy when it was over. The ultrasound not only shows if there is fluid on the joints, but also shows if there is increased blood flow to the joints, which indicates there is inflammation in that particular joint. An ultrasound was already done on his knees back in April, showing there is fluid on the left. The hips, elbows and wrist were checked yesterday because they are still bothering him, even after he has been on Naproxen for the last several months.

Then we we headed over to have x-rays done of his neck, wrists, hands, hips, knees, ankles, feet and toes. This is what the rheumatologist did when Mia was first diagnosed four years ago and what should have been done for JJ this past April when he was officially diagnosed with JA.

Sometimes, going with your gut and switching doctors really does prove to be the best decision after all.

It was noon when we were finally taking a break for lunch.
Mommy Tip: If you ever have to spend a day at Tufts with two young children, do not, I repeat, DO NO venture into Chinatown to take them to McDonalds. No matter how much they beg.

It is a bad idea.

And that is all I have to say on the matter. :)

After lunch, we headed up to the sixth floor to the Otolaryngology Department for a post-tonsilectomy and - adenoidectomy appointment for Mia and an appointment for JJ for the ENT to check his tonsils. (Keep in mind it is now 2:00 p.m. and both kids have just about had it with their day trip to Tufts!) Mia went first. Technically, this was our second post-surgery visit for Mia. We had to take her back six days after surgery because she started having horrible pain on the tip of her tongue that was keeping everyone up at night. This unusual pain wasn't from the instruments they used to depress the tongue during surgery. That pain would have occurred a day or two after surgery, not six days after and not on the tip of her tongue.

The ENT spoke to the rheumatologist and they both agreed that Mia's immune system was acting up. The pain on her tongue was because she had coxsackie virus (hand, foot and mouth disease). She was hurting more from having coxsackie than from the tonsillectomy! When he looked in her mouth yesterday, he said the surgery site looked great, but she still had some ulcers in the back of her throat from the virus. And, there is nothing we can do for her. We have to ride it out.

We brought JJ in to see the ENT because he has been having eating issues and we wanted to make sure his tonsils were not causing the problem. He will only eat soft foods (pastina, yogurt, applesauce, oatmeal) and hard foods (carrots, apples, chicken nuggets, fries) take him forever to eat and sometime he chokes. He went through a series of questions with us concerning JJ. He asked us: "Does he clear his throat often?" "Yes." "Does he snore?" "No." "Does he get ear infections and chronic colds?" "Yes, in the winter months." JJ gets more ear infections than any of my other kids. "Is he gaining weight?" "No." We told him his rheum noticed that last week at his appointment and is testing him next month for Celiac Disease.

After asking us a slew of questions, the ENT checked out JJ's tonsils and said they are large, but not as large as Mia's were (tonsils peak between ages 5-8). He recommended that JJ should see a Feeding Specialist at Tufts (I am thinking in my head, "Yes, let's definitely start looking for an apartment in the area!"). They would be able to tell if the tonsils were the problem or not. If they are, then they will be coming out. If not, then there is no reason to mess with them.


In other news: JJ started taking Meloxicam (Mobic) this past Monday and really likes taking his medicine only once a day instead of twice.

Up next for JJ: appointment with Feeding Specialist and then getting checked for Celiac Disease next month. We should have the results of the ultrasounds and x-rays back by this Friday/next Monday.

Up next for Mia: 504 Plan meeting for kindergarten with Head Teacher.

Up next for both kids: Uveitis check-ups at MERSI next Friday.

Up next for Mommy: a nap.