Sunday, December 25, 2011

Merry Christmas

                                            Merry Christmas and Happy Holidays to everyone!

Saturday, December 24, 2011

Our Visit To CHOP

Earlier this week we visited CHOP (Children's Hospital of Philadelphia) to meet the cardio-thorasic surgeon Dr. Spray and tour the hospital. After a drive down I95 we were at the hospital before we knew it, our appointment was at 11:15 so we missed all the rush hour traffic. The hospital has it's own parking so that checks one of the "must haves" on our list. Our first impressions of the hospital were good. A dedicated nurse case manager gave us a tour of the cardiac unit and answered any questions we had. She was very helpful and made Mark and me feel very comfortable with the idea of Piper having her heart surgery procedure at CHOP.

Our tour of the whole Cardiac unit included the Cardiac preparation unit, the Cardiac Care Unit and the Cardiac ICU. Liz also showed us the Ronald McDonald rooms for families. They had a TV room with chairs and refrigerators, another room with four separate bedrooms inside for parents to sleep in and a final room with computers and access to the internet. This checked another box on my list as I want to stay with Piper 24/7 while she is in hospital.

After the tour we met with Dr. Spray who was an incredibly nice surgeon; a million miles away from what Mark percieves as the typical, snobby surgeon type. He explained what would happen during the procedure and gave us the relevant statistics even though we are not big fans of statistics given our history. He gave us an idea what the size of Piper's heart is and what the size of the hole is. It's hard to imagine how a man with such big hands can do such a delicate and tiny procedure, but he does about 100 a year and is a leading expert in the field so he knows what he's doing.

We completed our tour of the hospital on our own by having lunch in the food court. The food was actually quite tasty; it certainly wasn't what I would call "hospital food". Mark was quick to point out that the food is most likey worse when it's for in-patients and not at and additional cost. This was something that stuck with us from the hospital we stayed in after Piper's birth. The hospital room and facilities were great, the food however left a lot to be desired.

So one hospital visit down, one more to go. We will have to make our decision after we visit NY Presbyterian (Morgan Stanley Children's Hospital) next week.

Merry Christmas (or as Mark being a Brit would say "Happy Christmas")!

Friday, December 16, 2011

Busy Busy Busy

I apologize for not writing as often as I've wanted to. December has been a very busy month. From Dr. appointments, photo shoots, holiday celebrations and the usual weekly events. Piper had her eyes tested and after dilating drops, that Piper hated, we found out that she has astigmatism and will most likely need glasses.   For now we are just enjoying looking at her beautiful blue eyes.

Since finding out that Piper will most likely need heart surgery in January we have been doing research into our options. After speaking to mothers whose babies have had heart surgeries at both hospitals (Columbia NY Presbyterian and CHOP). Mark and I have decided to visit both hospitals and meet both surgeons to make our decision. We have those appointments coming up this month.

Because of her upcoming surgery we have been advised to limit Piper's interactions with groups of people, so our plans for the holidays have been limited. I was looking forward to bringing Piper to my school - I love the traditions, especially during the holidays. First there is the holiday concert for the parents. Then the Pre-K class has a pajama party, with gingerbread decoration and a sing-along with the rest of the Lower School and Middle School. I wished I could have been there. On Saturday we have a holiday party at our neighbors house which we will be going minus Piper. However, my parents are looking forward to babysitting.

Not only did we go see Santa, we also had a photo shoot, to show off all of Piper's Christmas outfits. Here are just a few of the photographs that were taken.






Piper had her monthly developmental intervention session, where she was assessed on her skills so far. Her therapist gave Piper an A. She is on track developmentally and in some areas ahead of where she should be. I'm so proud of the progress she is making. One of the question the therapist ask was "Is Piper tracking moving objects?" I was very pleased to tell her that she does. Here is a clip of Piper following her fish mobile while swinging in her swing. Enjoy!!

video


Thursday, December 8, 2011

Piper's First Visit With Santa

One of the many traditions of the holiday season is a child's first visit to see Santa Claus. It is a time that is cherished by all whether you are taking your child to see santa at the mall, at a brunch held at your local fire station or at the circus that is Macy's in NYC.
So yesterday I braved the mall and took Piper to have her first photo with Santa Claus. While waiting in the very small line(thankfully there were only three families in front of me!), I began to wonder "when do children start to believe in Santa Claus?". I know that taking Piper to Santa was more for my pleasure then hers as she slept the whole time, but I must say I would rather a sleeping Piper then a "crying my head off" Piper; I've seen many photos of older children crying as they have been placed on a strangers lap to have a photo taken.
I look forward to the many future visits to see Santa; visits where Piper smiles and visits where she cries, and visits where she whispers what she wants for christmas and tells Santa that she has been a good girl. As for now enjoy Piper's First Santa's Visit.

Sunday, December 4, 2011

Polar Bear Plunge 2012

Before I was pregnant with Piper I never imagined I would have a daughter with Down Syndrome. When I was in high school I volunteered with the Special Olympics and I got a great sense of fulfillment helping out and seeing the athletes so full of energy and so happy to be participating.  In my eyes they were like any other child and now that Piper is in my life I look back on those days and hope that Piper will be able to participate in the Special Olympics and be as happy as the children I once helped seemed.

Last year Mark (my husband) participated in the Polar Bear Plunge in Seaside Heights New Jersey,  which raises money for the Special Olympics by having thousands of people gain sponsorship for the seemingly self punishing act of running into the Atlantic Ocean in the heart of a Wintery February. He was a member of the CAT crew which is in honor of our friend Colin who also has DS. This year I will be joining him and the rest of the CAT crew alongside thousands of others taking the plunge but this year Mark and I will be talking the plunge in honor of both Colin and Piper together. I am already exited for Piper's involvement in the Special Olympics some time in the not-too-distant future.

If you are interested in donating to the Polar Bear Plunge please check out this link:

Polar Bear Plunge

Thursday, December 1, 2011

Can't Catch a Break

So after re-reading my post about Thanksgiving, it made me think about how one day we can be so happy and feel like our lives have turned around for the better, and then a few days later get some information that makes us wonder why can't we catch a break. When I started this blog I had hoped it would be an upbeat blog. I had envisioned me writing about the wonderful things Piper was doing, the goals she was achieving and just how much of a blessing she has been to our family.

I had mentioned in an earlier post that Piper was born with a Ventricular Septal Defect (a type of hole in the heart). Yesterday we met with the Cardiologist for Piper's two month follow-up appointment. After an EKG and an Echo (ultrasound of her heart) the Cardiologist informed us that the hole didn't seem to be healing as previously hoped and that due to the unequal pressure in the ventricles causing elevated pressure in Piper's lungs, short of a miracle in the next month, Piper will need open heart surgery to repair the hole in the latter half of January. We are now in the difficult process of deciding which surgeon and hospital we will be putting the life of our precious Piper in. The good news is that we are lucky to have health insurance that allows us to choose the best of the best, but we can't help but feel that's a small consolation for what is a terrifying time for us. We keep asking ourselves over and over "Why can't we catch a break?".