Isabelle Bentley

Isabelle got measured for her SMO orthotics. They should come in 2.5 weeks.

Isabelle started a playgroup at the early intervention place she sees twice a week. It went really well. Jack loved it. 

My water babies loving the water. 

Uncle CJ got married today and I got to be in the pictures. 

Wearing their NHS food pantry shirts. 

Practicing drinking out of a straw! Helps with speech.

I bought us matching dresses. 

Stuffed animals. Unfortunately, I can't find a few of them :( Booooo.

Kneeling is the first step to standing.  Pulling to stand is the second.

She's going home today! Amazing. We were told it'd be 6-9 days minimum and it's 4... she's done beautifully. 

I can't believe hoq quickly kids recover from FREAKING OPEN HEART SURGERY.  They pulled her chest tube.  What a champ.

Dad is a rock star and staying at the hospital with Isabelle while I go to work and take care of Jackson. Huge thanks to my mom who also is taking care of Jackson. They pulled out her breathing tube and she's awake - one day early!

We got here nice and early but not before taking a family pic at home. They did all the pre-op stuff and then took her away after giving her some Valium to calm here down.  Update #1: They made the incision around 9:40 to look around to see what they are dealing with.  Update #2: They said they have her open and have examined what they are dealing with and it looks like everything's good and that there will be no complications. Her valves look good. Update #3:  She just went on the heart-lung by pass at 10:25.   Update #4: Dr. Breitbart came in around 11:30 to chat. He knows only what we know - nothing more.  Update #5: They told us she is off the heart-lung bypass around 11:25 and are closing her up. Update #6: Everything went great. She's heading up to the cardiac ICU.  Here is a comparison picture for day q from last year to today. Looks about the same.  Here are the machines keeping her alive. 

Isabelle had her pre-op at Boston Children's today. She had blood drawn (cbc fine but thyroid is a little high - they may be able to reduce her meds). They did a chest xray which looked fine. They did an ekg and an echo. We met with a nurse practitioner, a surgical fellow, anesthesiology and her cardiologist. We found out this surgery will take longer and eh may be here longer and there are more complications than the first time. She's having LVOTO surgery. 

We went to a tulip farm in Rhode Island as a nice little family day.  Interestingly there is a connect of tulips/Holland to Down syndrome.

Little miss Isabelle is pulling to stand. So exciting.

Isabelle has been waving goodbye too. 

I am 99% convinced Isabelle is saying hi. It doesn't sound 100% like it but it's an approximation. I'm counting it as her first word. 

Isabelle' s not really feeling the swing set this year. 

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!