Tuesday, June 06, 2006

From the beginning...

On Sunday, May 7th, around 11am, I was playing with Sophie on the ground when she started to do something I've never seen her do before. It seemed odd and out of the ordinary but not that alarming. She was laying on her back when all of the sudden her arms went out from her side, she made this noise through her nose and her eyes fluttered slightly. She made the motion about 8 times and it lasted for about a minute. She was congested so I just figured she was just having a hard time breathing through her nose. I picked her up and she fell asleep on my shoulder. Around 7pm Sunday night, I started getting worried about putting Sophie to bed, so I called the pediatrician's after hour service. I was told that she was probably just congested and having a hard time taking a deep breath. That was the only time she had done that and it sounded reasonable.

Around 2am Monday morning, she did the same thing again. I picked her up and she fell right back to sleep. Again, I just thought she was congested and having a hard time taking a deep breath through her nose.

Well, around 11am Monday morning, while sitting in her highchair, she made the same noise but her arms came in towards her body. I no longer thought she could be having that hard of a time breathing since she was sitting up. I called her pediatrician and got in to see her at 5:30pm that evening. The pediatrician examined her and said not to be alarmed but that she would call a pediatric neurologist tomorrow morning and beg to get us an appointment on Tuesday (evidently it is very hard to get a same day appointment with a pediatric neurologist). Around 10am Tuesday morning, the pediatrician's office called and said we had an appointment with a pediatric neurologist, at 5:30pm.

Off to the appointment we went (all the while feeling like an overreactive mom and believing we were going to be told that it was nothing to worry about). The neurologist examined Sophie and said she was developing normally for her age and hitting all the milestones (i.e. she is interactive with people, she follows things with her eyes, she uses both sides of her body, she can bear weight on her legs, reflexes look great, etc.). I had videotaped some of her "episodes" and showed it to the doctor. He believed they were seizures and made an appointment for us to come back to his office at 8am Wednesday morning for an EEG. An EEG records the brain activity. The best case scenario would be that the EEG would show normal brain activity and the worst case scenario would be that the EEG would show abnormal brain activity in all areas of her brain. We went home Tuesday night thinking of course she is going to fall in the best case scenario since she is developing normally. Sophie is a great baby - she has the most precious smiles that melt your heart, she sleeps well, she eats well, she plays well - what could possibly be wrong with her.

We get her up Wednesday morning and off to get her EEG. No worries - we KNOW she is healthy. Well, we were wrong - it was the worse case scenario. We were told that Sophie had less than 30% chance of ever living a normal life. If she fell into the 70% category and had brain damage, then there was no hope. Also, we were told she would immediately start on a drug that had some pretty bad side effects, one which she could die from.

We left the neurologist's office in a daze and drove immediately to Children's Hospital. The next 28 hours were the longest and hardest 28 hours of our lives. All we could do was pray that our little baby girl was going to be okay . Once we were admitted into Children's Hospital, the test started to begin. Another EEG, blood test, spinal tap, and an iv ended our long day at 11:30pm. At 7:30am on Thursday morning, she was off to get an MRI. It was so hard to see her laying there sedated. The MRI was the most important test of all the test she had at Children's Hospital. There are hundreds of things that would cause an EEG to be abnormal. But of all the causes, brain damage would be the worst. An MRI would let us know if she has brain damage, tumor, etc. We held our breath as the doctor came in Thursday afternoon with the results - the MRI came back NORMAL!!!!!! Thanks to all the prayers - our little baby girl was going to be able to live at least a relatively normal life.

Meanwhile, Sophie was started on a drug (ACTH injections) to help stop the seizures. We stayed another night in the hospital and went home late Friday morning. Sophie was so excited to be home. When it was time for her to take a nap, she had a big smile on her face when I laid her in her crib.

Well, that Sunday when it all started was 4 1/2 weeks ago. She is still on daily ACTH injections (given by her very brave daddy) and she started twice daily vitamin B6 last Saturday. She is still currently having seizures and will most likely be starting on a new drug in the next couple of days. She currently falls under the idiopathic infantile spasms category because they have yet to find a cause (it is best not to find a cause). We are awaiting the results of additional blood tests and she will possibly have to get a PETscan.


Anonymous said...

i am sending you, Sophie, and Brndon lots of light,love,prayers and positive energy. expect the best my dear elaine. if He takes you to it, He'll take you through it. hugs and kisses for Sophie.

Anonymous said...

Elaine, you don't know me but I work with your husband. He is a great guy. I know this is really tough on all of you but you will pull through. Sophie will turn out just great because she obviously has two wonderful, caring parents and lots of support. Hang in there and keep us posted. We are praying for you. Owen

Anonymous said...

Elaine and Brandon, I know you thru Paul and Patsy and think your family is the best. We say prayers daily for you and your sweet Sophie. In the world of medicine you never know what mircle is around the corner or at the next doctor visit. Marsha Borgmeyer

Anonymous said...

Elaine and Brandon,
For your precious Sophie, simply said GOD bless you, for she is his child and he will take care of her. Flo.