Flippies, White Noise and Update on Richard

If you’re looking for a unique gift for grandparents, check out “Flippies.” Flippies are custom flip books. This is one of those “wish I’d thought of that!” products. Very cool.

Mason (almost 11 months old now!) is a very good napper…provided there’s a steady stream of noise in the background, such as television, soft voices, etc. The problem is, we have other children whose voices are anything but soft. Richard recently downloaded “white noise” to his computer and we played that during Mason’s nap yesterday. He slept for three hours!

Update on Richard’s Vasculitis

When we left you last week, Richard’s condition was worsening and we still didn’t have a rheumatologist. Last Wednesday, our doctor personally called a local rheumatologist who agreed to see Richard this week. In the meantime, they ordered a blood test for Lyme Disease, which mimicks rheumatoid arthritis (RA), and put him on Prednisone. Within a couple of hours of taking his first dose of Prednisone, his abdominal pain went away. By the weekend, his ankle swelling was gone and his vasculitis was quickly fading. We were very happy, but we also know the Prednisone masks symptoms. Richard won’t be on the road to recovery until he receives a diagnosis. On Saturday, he had a brief flare-up of the vasculitis after building an outdoor solar shower on our land.

Anyway, one of his blood tests showed a positive RA factor, but that doesn’t mean he has RA. He had an appointment with our family physician on Monday. His Lyme test was negative (not completely reliable, but he probably doesn’t have Lyme Disease) and his CCP was normal (meaning he probably doesn’t have RA…but he still might). We were also told that the rheumatologist had not definitely agreed to see Richard. We were devastated. The doctor’s office hadn’t been able to find one rheumatologist in the entire state who could see Richard now, or even in the next month. Our doctor told us he has no idea what Richard has. He’s only sure it’s an autoimmune disorder/disease. We were right back to where we were over a month ago.

Then, on Tuesday morning, we got a wonderful phone call! The local rheumatologist HAS agreed to see him and his first appointment is this afternoon. I’ll post an update when we have one.

UPDATE:

Richard saw the rheumatologist this afternoon. He is a SUPER nice guy with a great sense of humor. We really like him. Richard does not have rheumatoid arthritis. They have no idea what he has, but it’s not that.

The doctor is confident Richard’s abdominal pain is part of the problem since it went away within hours of taking the first dose of Prednisone. I think he actually looked excited to have another clue to play with.

He spent a lot of time with us, asked lots of questions, and asked us more than once if we had any questions. He said he knows how hard it is when there’s something wrong and you don’t know what it is. He had such a great bedside manner.

Anyway, he ordered more blood tests (4 vials), urinalysis, and a sonogram of Richard’s abdomen for Friday morning. They’re trying to rule out Cholecystitis (inflammation of the gallbladder wall and nearby abdominal lining). If the sonogram is negative, they’ll then order a CT scan.

They’re also having him tested for Parvovirus B19. Yes, that’s right. You hear that word when you take your dog in for his annual immunizations. Don’t worry. It’s not the same virus. Richard can’t give it to Percy. Parvovirus in adults can cause joint pain and swelling.

They have temporarily taken him off his thyroid medication because all this happened just after they doubled his dose. He’ll be getting his blood checked weekly to see how his thyroid is doing. They also bumped his Prednisone back up to 40 micrograms per day and will be slowly lowering that each week or so to see where the threshold is.

Oh, he also mentioned possible “inflammatory bowel disease.” My friend, Gail, who’s a nurse, guessed he has Crohn’s Disease, so she may be right!

That’s all for now. 🙂

This week’s Maxism: Max has, in the past, had a problem with keeping gifts a secret, but he’s getting much better. Last Friday, to see if he remembered not to tell, I asked him what he bought me for Mother’s Day. He said, “I can’t tell you, Mommy.”

I replied, “Very good, Max! You can keep a secret!”

He then said, “That’s right. I can’t tell you what I got you at the candy store!”

I said, “Oh! You bought me candy?!”

His face brightened, obviously relieved that the gig was up and that he could spill the beans. He said, “Yes! I got you chocolate and a lollypop that has a sunflower on it ’cause I know you like sunflowers!”

I went along with it and said, “What kind of candy did you get me?”

He said, “I can’t tell you! It’s a surprise! But it’s chocolate…”

I got excited and asked, “Is it truffles?”

His face brightened once again. “Yes!”

He then followed me into the bathroom and said, “Mommy, I have to talk to you. I need you to NOT KNOW what I got you for Mother’s Day. And, don’t tell Daddy, okay?”

Hugs to all,
Angela

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