There's no place like home...

We were released on Saturday afternoon. Piper seemed to be doing quite well. Last night she started acting like her tummy might be upset and this morning she has thrown up twice.  We have an appt tomorrow morning at the clinic for labs. We also have another appt on Thursday morning.

We are scheduled to close on our new house on Friday, so we are trying to finish packing the house to move this weekend. I hope our family can handle all of this stress. We will have help, so we are not doing it alone.

Please pray for our family this week. I know He is listening. Thank you!

She Rested!

Piper slept all night long. In fact, she is still sleeping. Mommy even got some rest herself!  ... we are ready for another big (and blessed) day.

Surgery went well

Today was a very full day for Piper. This morning the CT scan went well. They had to sedate her, so it was a bit tough for Mommy and Daddy to watch. We stayed until she was sedated, and then we went and grabbed a late breakfast at the bagel shop in the hospital. When we returned Piper was still a little groggy, but doing a lot better.

This afternoon Piper had surgery so they could place a port in her chest. This will make it easier on her when they're drawing blood, administering chemo or giving her contrast for CT scans. She did very well with the anaesthesia and the surgery. The staff here at Duke is awesome!

Papa Bell and big sister Emma came to visit this afternoon. Piper was not really quite herself yet, but we still enjoyed their visit. Now Piper is resting quietly, and I am hoping that we can both get some sleep tonight.

Tomorrow ... round 1 of chemo .... and possibly going home!

March 2, 2011

Piper celebrated her first birthday. She had her 12 month ultrasound today. Unfortunately they discovered the wilms tumor. There are actually tumors on both of her kidneys. She has been admitted to Duke. Today (3/3), she has had a CT scan and an ekg. She will have surgery this afternoon to place a port in her chest. The port will be used to administer the chemo.  We are scheduled to start chemo tomorrow. We'll have a few rounds of chemo. Then we will have the surgery to remove as much of the tumors as possible.  She is doing well considering all she has been through. The people at Duke are doing a great job. They think she will be released tomorrow if all goes well. I'll post more when we know more.

Visit to the Ophthalmologist and Genetic Testing

We visited Piper's ophthalmologist at Duke last week.  We had good news!  Piper still does not need to have glasses!!!  We are very happy about that!  Her cataract is not any larger either, so we don't have to discuss surgery yet!  Praise God!!! 

Things look well right now.  We don't have to go back for 4 months!!!  Our only problem at this stage is getting Piper to keep her eye patch on every day.  We put it on, and she removes it in minutes!  Occasionally we can keep one on her for a few hours, but it's tough.  She still is advised to wear the eye patch for 2 waking hours per day.  We'll do our best!!!

We also met with a genetic counselor at Duke.  The ophthalmologist recommended that we discuss genetic testing.  Through our discussions, we learned that they can look at the 11th chromosome and see if specific genes exist.  Apparently, they can tell if the patient will likely have the Wilms Tumor or not.  Also, with the pax6 gene, they can tell if the patient will experience the effects of WAGR syndrome.  It would be nice to know if we need to prepare for any of these possible effects/outcomes. This would also tell us if we need to continue the renal ultrasounds every 3 months or not.

(Please Note :  I am not a doctor.  I am writing this blog as the mother of a patient.  I am writing about what I comprehend from the discussions and appointments.  I am not always going to be 100% accurate.  I wish I was.  I do not always understand everything that the Dr.'s are saying, and it is very easy to become confused when you are presented with so much new information.  I apologize if any information is inaccurate.)

Piper's next ultrasound is scheduled for March 2.  This is also her 1st birthday!  We are planning on having the genetic testing (blood drawn) on that same date.  We were advised that the full process (all results) could take up to 2 months.  The blood is often sent to various labs.

Hopefully, we have good news to report again very soon.  Piper will also have her 1 year check up with the pediatrician next week.  We are very excited about our little girl turning 1!

She is a very happy little girl!  She laughs a lot.  She plays a lot!  She loves her Daddy and her big sister!!!  She learned how to climb the stairs recently, and I think she'll be taking that first step on her own very soon!!!!  She's growing so quick!

9 Months

Piper is now 9 months old!  This year is going so fast!!!  She is getting so big, and WOW, she is busy!  She is crawling everywhere, and she is trying so hard to stand up!

We visited the pediatrician for her 9 month check up.  She is doing very well!  She weighed 18 lbs. 13 oz., and she is 28 1/4" tall! 

We also had her 9 month ultrasound.  We received the call a few days ago that the results were good! 

I am so happy to report that all is well for Piper!  Our next appointment is in February.  We visit the eye doctor at Duke.  We were told that we will probably have to get her prescription for her first pair of eyeglasses then.  She continues to wear the eye patch every day for 2 hours.

We learned something interesting!  The eye patches were causing a lot of irritation on her cheek and around her eye.  The Dr. recommended rubbing milk of magnesia around the area before putting the patch on.  It worked!  When we remove the patch, her skin is no where near as irritated!  Yeah!

We're preparing to celebrate Piper's first Christmas!  We're very excited!  Hopefully, we'll have lots of good things to post soon!!!

Merry Christmas to all!

6 Months Old

Piper is now 6 months old!  She is getting so big!  She is a VERY happy baby.  At her 6 month pediatric appointment she weighed 16.7 pounds and was 26 inches long.  She is very healthy overall!

The past few months have been going well.  We have had to patch her left eye each day for 2 waking hours.  She really doesn't like the patches, but she handles it well.  She's also getting big enough to start wearing her sunglasses!!!  This is a big relief to me because it allows us to be outside in the sun more!

Piper had her 6 month ultrasound a week or so ago.  We are still waiting for the results.  Hopefully no news is good news.  The pediatrician should be calling in the next day or so. ....  so we're waiting patiently.

She had her 6 month appointment with the ophthalmologist yesterday.  Things went very well!  They originally thought her nearsightedness was a lot worse.  They were trying to get her prescription, and they realized it's not as bad as they thought!  She does not have to get glasses .... yet.  Also, the cataract on her right eye is not getting any worse, so we don't have to talk about surgery yet either!  We still have to patch her left eye each day to make her right eye stronger.  We have some pretty patches, though.  We have pink ones, ones with hearts, and ones with butterflies!  We have to go back to the ophthalmologist in November.

So, for now, we enjoy watching her grow and learn.  She is rolling all over the place, and she is really getting strong.  She smiles and laughs a lot!