Isabelle Bentley

My friend, Abby, took some professional pictures of Isabelle.  http://www.abbygaylphotography.com/ This is a sneak peak. I will post more when we get them. 

Easily one of the worst things I've ever done was the sleep study. They suspect she may have sleep apnea due to her large tonsils and small air ways. She slept for like 4 hours and the rest of the time I had to hold her down to make sure she didn't rip wires out. They got enough to have enough info. Should know results soon. 

Scott, the kids and I  took a trip to Palm Harbor, FL to visit Scott's best friend, Dave & his girlfriend, Brittany. This is at South of the border in South Carolina.  On Uncle Dave's boat. At the Clearwater aquarium with Aunt Brittany.  At Lowry Park Zoo. Jack feeding a giraffe. Eating sand at clearwater beach. Also, Isabelle's first time in salt water.  And at the liberty bell.  New states the kids visited: New Jersey, Delaware, DC (not a state), Maryland, Pennsylvania, Virginia, North Carolina, South Carolina, Georgia, and Florida. 

Isabelle spent 5 hours at the ER this morning because she was coughing incessantly. They gave her 4 days of steroids and albuterol. 

Easter 2017.

World down syndrome day!

Celebrating the Irish in them.

This kid is a wicked good eater.  She eats everything. We are soooo lucky.

Isabelle's first anniversary of her first heart surgery was today. It's amazing how far she's come in a year!

Isabelle gives high fives now. She has for a long time. She also is crawling like crazy. She follows up from room to room and comes to us when we say "come here". Awesome. 

Isabelle had a sedated echo today to check on her aortic valve leak which is new. It was done at Boston Children's hospital.  Unfortunately, she will need open heart surgery again in the next 3-6 months for the obstruction in her left ventricle. It is starting to cause her aortic valve to leak which can be tricky to fix. They need to look at the pictures and videos more closely and if they think it's more serious it will have to be sooner but I am shooting for July when I am home. There should be no complications from this. And there is a 99.9% success rate. The obstruction is called a subaortic stenosis.

Using the new laminator, I made Isabelle new pictures so she can start pointing at things she wants etc... And so we can start naming important things and people in her life and give her choices. For example, "which song would you rather? Itsy bitsy spider or twinkle twinkle"? and then present both the spider and star pics and have her reach for one.

We had to put Bruin down today. Luckily I don't think this will affect Isabelle - she's too young to remember him. Scott and I got him when he was only a 3 month old puppy on Christmas in 2010. We drove all the way to NY to get him. He picked us out as he ran into Scott's open arms. But even then, the abuse he endured from his owners left life long scars on him. He had been kept in a kiddie pool with like 10 other puppies where they barely moved. He didn't know how to really walk when we got  him. He was very aggressive with food as they fought over small amounts of it in the pool. He was extremely skittish around many things like the fridge or black trash bags. We can only imagine why but he needed anxiety meds to help him. He developed seizures at a young age and needed to be on powerful drugs to combat them. We only found out this week that if a dog has a seizure for over 5 minutes it can cause brain damage and he had a few that lasted 10 or 15 minutes so I am ...

New art from Isabelle. 

It is shocking not only the amount of different things Isabelle eats but also the amount she eats. Many kids with down syndrome have trouble eating and sensory issues with textures. This kid eats everything. She eats way more food than Jack does.

Not a huge fan of snow

Tried painting for the first time. Did not go over well. 

Her croup cleared RIGHT up after 5 days of steroids. Inhalers need to be continued until her tonsils and adenoids come out.

Woooo! That Pats won the Superbowl!

Isabelle got her 1st haircut. And her hair looks great in pigtails. 

The write up on the mdsc hockey even was published today here on page 3:  http://linpub.blob.core.windows.net/pdf/2/f913367e-268f-461e-8fa2-9e9bf7b73fff.pdf

So got some not great news at the cardiologist today. The left ventricle obstruction is causing her aortic valve to slightly leak so she needs to get a sedated echo at Children's at the end of February to see if we need surgery, nothing or maybe a balloon procedure. 

Isabelles eyes are perfect. Nothing wrong with them. 

My brother and his fiance had to return all of Jack's clothes we gave them for storage reasons so I spent a few hours reorganizing our storage area. It has clothes sizes preemie to like 5T for both boys and girls plus old toys, shoes and other baby stuff. 

No more teeth since she got her second one but you can see them in this picture clearly!