7 weeks old

The Department of Human Genetics

Just seeing the name on the front of the building sent a chill up my spine.

I didn't want to be there, but I had to go for Addie.

Our appointment on Monday was a major emotional set back for me.

We found out details that I wish I never would have heard.

The doctor that we saw had absolutely no compassion and among other things told us that we could expect for Addie to have a "grim" future.

I'm still trying to figure out where along the way in medical school he was given the right to play God and decide my baby's future.

I was very upset at his demeanor.

The doctor informed us that he was going to send Addie's MRI to a world-renowned physician in Chicago who specializes in Addie's condition.

He told us that he wanted to confirm Addie's diagnosis because her condition is so rare.

He is verifying that her diagnosis is correct and wanted to rule out a possible misdiagnosis.

He let us know that this would not change Addie's prognosis but would merely allow us to decide "which support group we should join".

I was a bit taken aback and ask him how many other people he has seen with Addie's condition. Over the last ten years, he has seen SIX people.

I was stunned. I knew the condition was rare, but I still didn't realize how rare.

I'm not in denial, but I'm not giving up hope and never will.

God is protecting Addie and will heal her brain.

Our prayers will make all the difference!

6 week check-up

Addie had her six-week check up...she's weighing in at 8 pounds 6 ounces and is 20 inches long! She met all of her one-month milestones!!!! Addie is smiling, holding her head up and focusing on objects! Dr. Dudgeon gently reminded me that although she met these milestones that we will get to a point where this would not happen. My goal is to prove him wrong! Poor Addie had a tough time with her shots and was running a fever of 102.2 and is still struggling today, but doing a little better.Our appointment at The Bell Center was very encouraging yesterday. Addie's physical therapist (Miss Holley) was very pleased with the progress we've made with the muscles in her arms. We have to continue to do the stretches daily and hopefully in another two months her little muscles will be all loosened up! Addie still isn't taking a bottle, which is going to make me going back to work extremely difficult to say the least! God is watching over us so we will manage to find a way to make it all work out!

Running for Addie!!!

This picture is of Brooke Lyles; she is the daughter of a friend at work. This precious little girl offered to run in Addie's name at the Mercedes Marathon this past weekend. Runners have the opportunity to become "Partners in Training" and run for a child from The Bell Center. I feel honored that Brooke chose Addie and made my baby special for the day!

6 weeks old

5 weeks old

Here is Addie working hard at The Bell Center today. She is working with her special educator, Miss Jennifer. She did very well and did everything that was asked of her!

Trying night

Addie had her appointment at The Bell Center yesterday and they are working with her on taking a bottle.

Due to an extremely hectic day and a daycare melt down (very long story) they had to try Addie on formula since I wasn't able to bring any milk with me.

She did great although it was very frustrating for her.

On the ride home Addie got VERY sick and vomited everywhere.

I thought it was just from the formula and her little tummy not being use to it, so I got her home, cleaned up and put down for a nap.

As the evening progressed Addie was not waking from her nap.

Chris and I kept trying to wake her and when she would open her eyes, she wasn't responding like she normally would and she also wasn't crying in response to her needs.

Addie wasn't attempting to nurse and had only one wet diaper so my initial thought was that she was dehydrated.

I called the doctor, which led us to Children's Hospital E.R.

Poor Addie was put through a multitude of tests; blood work, urine test, x-ray and a lumbar puncture (spinal tap) and finally started on an I.V. to get her fluids back up.

All tests came back negative, so the doctors believe that one of two things happened.

Either Addie had a seizure, which caused the vomiting which led to her lethargy, or she simply had a bad reaction to the formula (soy based so it was a little surprising) and couldn't recover from the lose of fluids.

We spent ALL night in the E.R. and after Addie's second round of I.V. fluids and no answers we were released from the E.R.

We immediately made our way to Addie's 9:00 appointment with the new neurologist, Dr. Ness. She is absolutely wonderful!

She felt like since there wasn't proof that Addie had a seizure she wasn't going to worry at this point (great news!).

However, she did tell us she feels like it is a matter of time before Addie does start having seizures.

With Addie having two troubling diagnosis, the doctor feels this is inevitable.

Dr. Ness told us that Addie makes great eye contact and is very strong; we love to hear good news!

Dr. Ness also said that with her receiving therapy so early and with us working with her at home, that this does increase her chances of having a better prognosis.

She was very honest and let us know that there is definitely the damage to Addie's brain but was encouraging and told us only time would tell what to expect.

We simply have to "Wait and See".