Thursday, December 20, 2007

Cody with Santa




Here is Cody sitting on Santa's lap at the ward Christmas Party. He asked him for a soccer ball. We'll see what Santa brings.

DNA test results

The DNA test results came back today. It turns out that Jade has a genetic disorder. She has a deletion of the 15th Chromosone. What it means is that she has one of two possible syndromes either Prader Willi Syndrome or Angelman's Syndrome. She went to get her blood drawn again today so they will be able to be sure which one she actually has. When we get the test results back from that I will write again and update everybody on the results and what it means for us.

In other news Cody and I had a great day sledding and playing in the snow in the morning. I forgot to take my camera though, so I don't have any pictures. I know a lot of you are thinking, how did you go sledding if there is no snow in Plainsboro. We drove north about an hour and fifteen minutes or so and went to Hopatacong State Park. They have several inches of snow up there and a great sled run for Cody right off of the parking lot. We had a lot of fun. We even through some snow balls at each other and built a snowman. The snow was pretty packed down and icy, but it was great. I'll try and remember to bring a camera next time. The picture below is actually from last year, but I guess you get the idea.

I also just wanted to thank everybody again for all of your help and support. We wouldn't be able to get through all of this without good family and friends to help us out. It has meant a lot to us.

Tuesday, December 18, 2007

Doctor's Appointment

Well, today we took Jade to her Pediatrician for the first time. She weighed in at 5 lbs 11 oz. That means she gained 7 ounces since she left HUP on Friday. I know it doesn't sound like that much, but for a newborn it is leaps in bounds. In fact our Pediatrician said they only expect her to gain between 0.5 oz - 1 oz a day, and Jade has gained almost 2 oz a day. So they are pleased with that. Jade still has low muscle tone and not a strong suck, so she still is feeding through a tube, but we are encouraged by her progress. In other news Cody is watching Chicken Little for the 15th time today. Not really, but he really loves the movie, and I can probably quote the entire thing by now.(He probably could as well.) Actually, Cody is doing really well also. He has just decided he wants to be potty trained. He has started to wear "big boy underwear" during the day and has been doing pretty good.
Here Jade is to the left looking pretty in pink. Actually, she looks a lot cuter than Molly Ringwald.

Sunday, December 16, 2007

Our Apartment Christmas Decorations

Well, I just wanted to put up a few pictures of our apartment. We have done a pretty good job of decorating it for Christmas this year.

Our aparment complex is having a balcony decorating contest. This is how I've decorated it so far. The snowflakes flash white lights. There are colored lights under the garland with white icycles. Plus, the tree has white lights on it as well.


Saturday, December 15, 2007

Friday, December 14, 2007

Jade is Home



Jade came home today!! It has been two weeks since she was born. We were so excited that the doctors let her come home today. She feeds through a tube that runs down her nose into her stomach. Becs and I had to be trained on how to put in the tube correctly and everything. It is a little strange to be feeding her with a tube into her stomach, but it is great to have her home. She has a lot of follow up doctor's appointments. She has a million doctors appointments over the next couple of months. Of course she has her regular Pediatrician to go to. In addition to that she has to go see her team of Neurologists at CHOP still, plus she also has to go to a Neuro-muscular clinic in Phili. She also has to go back to the team of Genetecists she has been seeing at CHOP. Then she has to go to a Physical Therapist to help with her muscle tone and an optomologists to re-check her eyes. Finally she has to go to Speach Therapist to help with her sucking. (I know, it sounded wierd to me too.) Thank goodness for insurance.

Anyway, Becs is waiting to get on the computer. I'll just upload a couple of pictures from today, and I'll write again later.

Tuesday, December 11, 2007

Jade Danielle Pearson

Well, this is my first post. I am new to this whole blog thing, so you will all have to bare with me as I learn how to do this. I just wanted to post a quick message to update everyone about Jade. Jade was born on November 30, 2007 at 8:31 am. She was 19 inches long and weighed in at 5 lbs 7 oz. Rebecca had to have a C-section because Jade was under a lot of distress with the contractions, even though they were still very light and far apart. We later learned this was partly because she had the umbilical cord wrapped around her neck.


The night after she was born, she was transferred to the Special Care Unit in Princeton Hospital because they were worried about her eating and muscle tone. They performed many tests on her there including a CAT scan and a spinal tap. They eventually decided they didn't have the resources or appropriate personnell to diagnose what was wrong with Jade. On Wednesday, December 5, 2007 at about 1:30 AM she was transferred to the NICU at the Children's Hospital of Philadelphia (CHOP). Actually, she was transferred to the Hospital of the University of Pennsylvania(HUP), which is right next door to CHOP. However all the doctors she sees are from CHOP, and she is transported next door to CHOP whenever tests are performed on her.


She has a whole bunch of doctor's looking after her. She has a team of Neurologists trying to figure out if it is a Neuroligical problem. They performed an MRI, however it was inconclusive. They are currently doing a number of different blood tests to look for various neuro-muscular diseases and such. She also has a team of Genetecists trying to figure out if it is a genetic problem. They are doing various DNA tests and growing chromosones and stuff. Unfortunately all of these tests will still take several weeks to get results.


In the mean time her Neonatologists continue to work with her to get her to suck. Her low muscle tone makes it so she doesn't suck and so it is very dangerous to try and feed her with a bottle because she could breathe in the milk. As a result she is fed through a tube. The doctors say they will give us a class on how to insert the tube ourselves and we will need to take some infant CPR classes so that we can eventually bring her home and feed her through a tube ourselves untill she learns to eat for herself.


We drive down to Philadelphia nearly every day to see her. She seems to be doing well. We are very grateful for the wonderful care she is receiving from the hospital, as well as the service and prayers we have received from friends and family.