Crawling...

I can officially say that Sophie is now crawling!!! For the last few weeks, she would go forward a few spaces but now she will occasionally go forward about 5 feet without stopping. She is not very fast or very good at it BUT she is working on it. It is so wonderful to see her still progressing although at her own pace. Though, it hasn't been an easy journey to get to this point. As part of our new physical therapy approach, I am to use tough love (or a more pleasant way to say it - power of love). At times, she would sit there and have this really sad look in her eyes with tears rolling down her face. She would stare straight into my eyes with this look of desertion. Oh, how this tore at my heart. But eventually, she would stop and crawl towards me. At first, only a few spaces. Then, a few feet. Now, she will crawl (with a few rest stops) about 15 feet to get to me. Here is a video of Sophie crawling. Yeah Sophie!!!

Devastating news...

We received the official radiology report. To sum it up...Sophie is not a surgical candidate because both hemispheres are abnormal.

Here's the e-mail I received from Dr. Chugani -

...I have all the reports now, basically we are seeing abnormalities from both sides of the brain, but worse on the left. Nevertheless, because of bilateral epileptic discharges, surgery is not recommended...

Here's part of the radiology report -

...FINDINGS: The EEG performed during the PET scan showed frequent spike wave activity on both the left and right sides. There was no consistent lateralization of interietal discharges. The PET scan showed decreased glucose metabolism involving mostly the left parietal, occipital, and possibly temporal cortex. On planes 24 and 25, it appears that the left frontal cortex may also be hypometabolic. On planes 26, 27, and 28, the left medial temporal lobe structures also show hypometabolism. In the right hemisphere, parietal cortex hypometabolism is seen on planes 13 and 14. The basal ganglia appears symmetric. There is thalamic asymmetry with lower metabolism on the left compared to the right. The brainstem and cerebellum appeared normal...

So there it is. I did not realize that I would be this sad to hear that Sophie would not have the option of brain surgery. It just hit me - this is something we will be battling for a long time. I thought, we will try different medications to try to get the seizures under control and if we exhaust all other options then we could turn to surgery. No longer an option. Please do not bring this up if you talk with me because I am just trying to hold on. I am trying not to think about it too much.

Update on Monday's EEG...

Hypsarrhythmia did not return. EEG findings are consistent with that of the EEG performed in Detroit. See post dated November 12, 2006.

Medication Update...

Sophie is completely weaned off of Vigabatrin. I am so glad she is off that drug. It did absolutely nothing for her seizures (possibly even made them worse). She has been on Zonegran for 3 weeks now and still no improvement with her seizures. So tonight she started Depakote. We are also going to try weaning Topamax again (last time we tried weaning Topamax, her seizures became worse). Currently she is on 150mg of Zonegran, 125mg of Topamax (we are going to wean 25mg every 3 days) and 125mg of Depakote. Like always, I am hoping Depakote is the one. I am trying not to lose hope that we will find a drug that will make her seizure free but this is her fifth drug. It is possible for her to become seizure free, but as each new drug is tried and failed, her chances decrease.

Sophie is currently having about 100 seizures a day. Her seizures are becoming more severe - almost as severe as when she was first diagnosed. She will be having an EEG on Monday to make sure the hypsarrhythmia has not returned.

Clinic Letter...

We received the Clinic Letter from Dr. Chugani that better explains in medical terms the results of the FDG PET scan...

"...the results of PET, which shows hypometabolism on the left side, mostly on the left posterior region, suggestive of cortical dysplasia. The PET scan can be repeated later on if necessary including the FMZ PET scan. Because the PET scan shows some focality, should the infantile spasms become intractable and do not respond to any medication surgical resection would be an option in the future."

and the EEG...

"...shows the background is normal for the age. Frequent spike and wave activity is seen in the right temporal region, bitemporal region and also independently generalized irregular spike and wave activity. Two types of seizures were captured during the recording. One is myoclonic jerks, which is characterized by a single body jerk and the EEG shows giant generalized spike and wave activity. The second is head drops in isolation and also in clusters, which is characterized by sudden head drop. The EEG showed diffuse single delta wave activity. Head drops when they came in clusters had three such episodes that lasted up to three minutes and consisted of approximately 20 episodes."

Sophie's best friends...

Well, actually, Laney and Brock are Sophie's best friends by default. Jen (Laney's mom), Dana (Brock's mom) and I all lived together after we graduated from college. We use to dream about the day we would be married and have kids and how much fun it was going be. WRONG! Well, we all DID get married and we all DO have kids and it IS fun - just not the kind of fun we imagined. What happened to all the free time we were suppose to have so we could get together often to go shopping, have lunch, lounge around - all while having perfectly behaved kids that can easily entertain themselves??? Oh, how naive we were!!! I love when couples that don't have kids talk about how busy their lives are... ha - I did not realize what busy was until now. To all you couples without kids who are someday planning to have kids - ENJOY THE FREEDOM, ENJOY SLEEPING IN, ENJOY BEING ABLE TO GO TO THE STORE WHENEVER YOU FEEL LIKE IT, JUST ENJOY... On the other hand, nothing will ever touch your heart as the laugh of your child.

Sophie & Brock with Scott (Brock's dad)

Laney & Sophie

Laney crawling over Brock

Jennifer, Me & Dana (Pre-baby days)

Happy Halloween (a little belated but what's new?!?!)...

Sophie had her first piece of candy on Halloween and what a mess it was!!! First, she had a few licks on a lollipop at Grandma Lee's house - not too bad of a mess. Then she had a few licks on another lollipop right before we left to go trick-or-treating - not too bad of a mess. But while we were out trick-or-treating at a neighbor's house, she got another lollipop. Brandon and I were caught up in conversation and within 5 minutes, she went from being a cute little lamb to a big sticky wet mess.