A woman who has a blog about Graves Disease interviewed me about our experience with Norah’s illness, and she published it on her blog today in a post called “Norah the Warrior.”  Check it out!

While we’re on the subject, Norah’s doing great.  Her incision is healing well and I don’t think she’ll have a very visible scar.  She hasn’t had any trouble with the medication, and although she’s back to her feisty, stubborn, independent self, she’s not that crazy-manic kid any more.

Last week I took her for her 4-year pediatrician’s appointment and she had grown 6 inches since her 3-year appointment.  She has also gained 4 pounds since the end of July when she was diagnosed.  Prior to that she was eating and eating but really skinny because of her racing metabolism.  With her thyroid levels under control her metabolism has stabilized and she has been able to gain some weight back.

She’s having labs done tomorrow and we have her 30-day post surgical follow-up Thursday.  We’ll be back with her endocrinologist at Children’s from now on.  I’ll miss the doctors at Yale, but Boston is a much shorter drive.  I was on the YNHH website the other day and I saw that Norah’s surgeon has been busy…one of his research projects is to grow heart valves for kids with heart defects.  He’s cool.

We had Norah’s post-op appointment with Dr. Breuer today, and she made a card for him to go with the giant bag of cookies we brought:

Dr. Breuer took off the steri-strip (like tape) that was over Norah’s incision and it doesn’t look bad at all.  He gave me some nail polish remover to get the sticky stuff off her neck…that just seems WRONG!  But…he’s the boss, so tomorrow morning I’ll be scrubbing Norah’s neck with nail polish remover.  Then we just need to keep sunscreen on it for a year to avoid having the scar “tattooed” by the sun.

So far, Norah is tolerating the replacement thyroid hormone just fine.  Her thyroid levels will be tested a month after surgery to help determine whether her dosage is correct.  She had blood drawn today to check her calcium and I’ll probably hear from Dr. Rivkees on that tomorrow.  My guess is that her calcium level is fine.  She has 5 more days of Tums and Vitamin D unless we hear otherwise.

I may have spoken too soon about her bad behavior being due to her thyroid, because she’s been driving Aliya and Adlani crazy.  We’re trying the reward system for good behavior because threats and punishments aren’t working.  This morning she was misbehaving in the car as we left for school, so I took her out of the car and told her that she’d have to stay home.  The little sh*t ran off to the back yard.  She’s fearless!  Oh well…I’m sure that will serve her well in the future.  I hope I survive it.

After Norah’s 10 a.m. blood draw we had about an hour to kill while we waited for the results, so we went out to the absolutely gorgeous healing garden on the 7th floor of the Smilow Cancer Hospital.  It’s connected to the Yale-New Haven Children’s Hospital by a glass bridge on the same floor as the PICU.  It’s such a peaceful, beautiful space, and the weather was perfect. 

After spending some time in the garden, we went to the playroom in the PICU and hung out with Woody (a volunteer), and a woman from the Child Life department.  The Child Life specialists do all kinds of things to make the kids less worried, less bored, whatever they need.  Our Child Life specialist, Leah, brought movies, games, and craft projects to keep Norah occupied yesterday, which was a huge help.

We got the great news that Norah’s calcium had risen slighly, along with the bad news that she had to have one additional blood draw.  We had promised Norah that the previous draw would be the last and it’s her least favorite thing to do, so it was a tough one.  Our PCA (patient care assistant), Rosa, helped out and then took Norah to the toy closet and let her choose a toy to take home.  She picked a tea set.  Rosa was really impressed with Norah’s Spanish and tried to distract her during her blood draws by asking her questions in Spanish.

We finally headed out around noon.  As we said goodbye to all the staff in the PICU, I jokingly said, “I hope we never see you again!  Or maybe Norah will see you when she’s here for med school!”  Norah keeps saying that she wants to be a doctor at Children’s in Boston.  After seeing up close the hours our doctors keep and the dedication to their work, I’m not sure I’d choose that life for her, but I guess I don’t get to choose. 

Norah’s teacher, María, came over for a visit this afternoon, and Norah is almost back to normal.  I am exhausted.  Nightie-night.

Click here to start at the beginning and read the first post about Norah’s thyroid.

It was a long night, only because Norah had to have blood draws and Tylenol every 4 hours, so I didn’t get a lot of sleep.  All 3 calcium tests came back with a level over 8, and they were supposed to be at least 7.5.  I don’t know what that value means, other than that we can go home.  She was able to finally eat this morning because the riskiest time for bleeding has passed and she won’t have to go back to the O.R.  She will have one more blood test at 10 a.m., and as long as she’s still over 7.5 we’ll be able to leave. 

This is a great hospital and our stay has been terrific, great staff, lots of little touches to make it easier for us, but we’re ready to go.  We’re just keeping Norah from jumping on the bed or running in the halls until 10, then we’ll go for a walk around the 7th floor until the test results come back.  Keep your fingers crossed!

Click here to read the next post about Norah’s thyroid.

Click here to start at the beginning and read the first post about Norah’s thyroid.

Norah and Ben are both zonked out…my “bed” is the blue recliner in the foreground.  Cozy!

You may have noticed the gorgeous flowered blanket in some of the earlier photos.  When we arrived in our room in the PICU (pediatric ICU) direct from surgery, we found this beautiful fleece blanket, and a goody bag of items to help make our stay in the PICU a little easier.  The bag had snacks, water, playing cards, a puzzle book, a pad and pen, tissues, tea, mac-n-cheese, gum, and a beautiful painting of a rainbow from a young artist named Cecelia. 

These gifts were from Brady’s Smile, a charitable organization founded by Annie and Matt Hinton to carry on the spirit of their son Brady, who passed away at the age of 2.  Brady endured numerous surgeries and medical procedures, and spent close to 6 months of his life in an ICU.  And through it all, he smiled.  His parents are honoring Brady’s smile and his life with their work to help other families spending time in the ICU.  We are very grateful to have received these gifts in Brady’s memory. 

Click here to read the next post about Norah’s thyroid.

Click here to start at the beginning and read the first post about Norah’s thyroid.