Frustration, Devastation, and Hope

First on Tuesday, we visited with the cardiologist at Dallas Children's Hospital. After an entire morning of EKG, X-ray, and re-telling of medical history to nurses, medical students, medical fellow and again to the actual cardiologist, we still know nothing about what is causing Aly's tachycardia. We know she has tachycardia; we don't know why. We know her heart looks good; we don't know why it races. We know her heart has a normal sinus rhythm; it just pumps too fast after sitting up for a couple hours. Hmmm. The doctor feels that this is a neurological problem. He feels this might just be a Rett thing. Frustrating!

Hmmm. This "Rett thing" is messing again with Aly's quality of life! Maybe, it's related to the high TSH (thyroid) and can be treated by the endocrinologist? We'll see the endocrinologist at the end of the month. In October we have an appointment with the Rett Specialist in Houston, but Aly cannot tolerate a trip that requires her to sit up for long periods of time which causes her to suffer from the tachycardia! Frustrating! We're hoping that our neurologist in Dallas has something he might prescribe to Aly for the trip to see the Rett Specialist. We'll see the neurologist in Dallas next week for Aly's and Cam's appointments.

Then on Wednesday afternoon, the doctor and I briefly spoke on the cell phone about some disappointing results from Cam's tests. The sleep study reveals that Cam has periodic limb movement sleep disorder. The MRI shows nonspecific scattered signals in the front of Cam's brain. However, Cam does not have a brain tumor (I didn't know we were looking for one) and I am not sure about whether there was any brain damage. I was writing down the information while cooking dinner, doing laundry and taking care of my kiddos, so I missed some information. Like I said, we'll see this doctor next week for more details. And even though I reminded him of the pending appointments, he most importantly called because he wanted Cam started immediately on anti-seizure medication since the EEG reveals significant abnormal activity on the back left side of the brain, which indicates that Cam has seizures while sleeping. I should say he insisted we begin medication since Cam has a (newly diagnosed) seizure disorder. Needless to say, we are devastated, again.

Hmmm. We feel so frustrated and so disappointed!

Recently, I turned to my "bloggy" friend who inspires me to have hope through her perseverance and gifts! Click on friend and read how she offers hope to me, and to all of us. She might look like she has no quality of life, but looks are so deceiving. Just give her a chance and read why she is inspirational!

Hmmm. To all of you out in the "normal" world, we may look like we are hitting a "record setting" low since the circumstances surrounding our family seem unbelievable and unbearable. And actually, we currently feel like things are desperate as two of our children are having extreme medical problems that are completely unrelated to each other. BUT, looks and feelings are deceiving! I know this because many times in the past we've thought our family has hit "rock bottom," only later to realize that the "valley" could run much, much deeper! You're right: William and I feel absolutely devastated!

But the truth remains:

I will lift up my eyes to the mountains; from whence shall my help come?
My help comes from the Lord, who made heaven and earth. (PS. 121)

Just know, we're keeping our eyes on the mountain, on His truth, even though we feel like lying down in this valley for now.

By the way, on Monday afternoon, we took these pictures of Aly. See how proud Aly is of her new, purple, butterfly(wrist band)bracelet? Kassidy blessed her sister with this gift by earning tickets for good behavior at school, by saving ten tickets, and then by spending them at ticket store on Monday morning. All weekend Kassidy was excited to give Aly such a wonderful gift. Now Aly matches Kassidy's pink, butterfly (wrist band) bracelet, and both of our girls are so proud! Unless you know Aly, you might not feel like she has much of an influence until you see the truth of how important her life is to her family and her siblings. The truth of hope manifested in the generosity of her sister!

I guess you can tell we definitely need prayers now. I'll post again later, M&R7