Gratitude.

Last week, friends of ours hosted a benefit fundraiser for Sadie. You can view photos of the event here. We cannot properly express in words our gratitude to those individuals who put this event together - Chip & Lisa, Jeff & Erika, and Josh & Heidi - we are forever indebted to you for offering up so much of your time and energy.

Proceeds from the fundraiser will go to Sadie's Special Needs Trust. The funds will be used to pay for anything that is not covered by insurance - prescription co-pays, specialized equipment, extra therapy sessions. While we are thankful that insurance is picking up a huge tab for Sadie's care, we are learning very quickly that there are a number of things that simply aren't covered.

A portion of the proceeds will also be donated to the Aicardi Syndrome Foundation. The Foundation connects families affected by this disease through a biennial Family Conference. They also assist with funding two major research teams who are doing research on Aicardi Syndrome.

Many, many other people also donated time, items for the auction, money - we will do our best to thank each and every one of you personally. We have been completely overwhelmed by the support we have received, and the people who have supported us...many of whom we have not seen in years (yes, you). It's beyond heartwarming to know that Sadie is loved and so many people want to help out. Please know that your donations will go to help our little girl live the most fulfilling life that she can.

Sadie's godmother always says, "that little girl is going to change the world." We think she already has.

If there's anything we can do (continued)...

As we learn more about Sadie's condition, we also learn more about our needs as parents as we navigate this new reality. So, as a continuation of our "If there's anything..." post, we decided to add a few more things to the list.

6) Advocate. We were disappointed to learn that Illinois ranks dead last in many services to individuals with disabilities. Read more about that here. (For example, Sadie is currently on a wait list of 20,000 people to get any sort of assistance for her disability.) Send a letter or e-mail to your Illinois representative about providing more programs and services for individuals with disabilities.
7) Give to Sadie's Special Needs Trust. We've set up a special trust for Sadie to pay for items that are not covered by insurance. (i.e. therapies, medications, special equipment, etc.) The trust ensures that any funds set aside to care for Sadie will not be counted against her once she turns 18, and will enable her to access public funds such as Medicaid and Social Security Income. It also will provide for Sadie's care if, heaven forbid, anything were to happen to Adin or myself. If you'd like to make a donation to Sadie's Special Needs Trust, please let us know. You can also donate with a credit card through PayPal (simply click the link on the right).
8) Attend a benefit fundraiser for Sadie and the Aicardi Syndrome Foundation. We are blessed to have great friends who are planning a fundraiser next week in South Bend, IN. It will be a fun party with great music :) Click here for more info. We hope to see many of you there.

Home Sweet Home. Sleep Sweet Sleep.

Sadie has been home from the hospital for about a week. She is still struggling with kicking this recent respiratory virus. At her pediatrician's request, she is now the proud owner of a pulse oximeter and a nebulizer machine. We will use the pulse-ox at home to monitor her O2 levels should she get sick again. We've been using the nebulizer machine to give her albuterol breathing treatments three times a day. We'll continue with the treatments until the virus works its way out and her breathing returns to normal.

While in the hospital, we finally weaned Sadie off of one seizure medicine. While Clobazam looked promising at first, it seemed to be having an adverse affect, as Sadie's seizures went up with each increase in dosage. Once we backed off the dosage, her seizure activity went down. We also started Sadie on Dilantin when she was having a rough time with seizures at the hospital. I hesitate to say that her current seizure medication cocktail (dilantin, vigabatrin, topomax and clonazapam) seems to be showing some improvement. The seizures are at their lowest level. She still has episodes daily, but we've gone from 20+ seizures a day down to 3-5. Our next step is to slowly wean a few of these meds that we're not entirely sure are working, something we've been wanting to do for quite some time.

We also received some troubling news a few months ago that I didn't feel comfortable blogging about at the time. The doctor noticed some new brain abnormalities in Sadie's recent MRI. According to the doctor, there were a few areas that showed some "disbursed white matter." She said the changes looked consistent with a mitochondrial or metabolic disorder. "Instead of her Aicardi diagnosis?" I asked. "In addition to her Aicardi diagnosis," she responded. Wonderful.

This time around, I did no googling, no researching...I simply just ignored the fact that our daughter was being tested for an additional disease and kept on living. As a friend so wisely stated, "no point in going down paths that aren't yours."

I've come to the conclusion that we are the big losers when it comes to the battle of the odds. If a medication has a extremely rare side effect, Sadie is bound to get it. As it turns out, that's what the doctors think is happening with these MRI abnormalities. So far, all the mitochondrial and metabolic tests have come back within normal ranges. So that leaves the medicine. Apparently, one of Sadie's seizure medications, Vigabatrin, can cause MRI abnormalities that are similar to those shown in Sadie's MRI. The problem occurs with high doses and when children are very young (check, check). The good news is these abnormalities often revert back to normal once the medication is weaned. So, the plan is to slowly get her off vigabatrin and hope it is a transient finding and the MRI goes back to its original state.

We are overjoyed to be home after our 7-day stay at Children's Memorial. Sadie has been delightful this week. Smiling, chatting, happier than we've ever seen her. She dove headfirst into her therapies this week and did a great job. The picture above was taken during one of her monthly music therapy sessions. She liked the rain stick toy, but she liked her therapist's diamond ring even more. Smart girl.

The only trouble we've had with her is sleep. The girl simply doesn't sleep. And when I say that, I mean she is up about every hour at night. I found that one side effect of dilantin is insomnia. However, I'm not willing to give up seizure control for sleep. Insomnia combined with the coughing make for long nights for the McCann clan. We've been encouraged by her doctors to explore melatonin, which is a mild, naturally-occurring sleep aid for children. With all the medicine that she's on, we've been hesitant to add one more thing...but give us a few more nights and we may be there. For now, we thank God for espresso.