A little help from our friends...

Weekly Update:

Well, it has been a less hectic week. We started vigabatrin on Saturday morning. Alli seems to be responding well. We are gradually increasing her dose over the course of 10 days to get to 500 mg per day. She is currently at 250. At the same time we are weaning her off of prednisolone. She was getting 40 mg per day. Now she is getting 24 mg per day. I am still seeing her have intermittent jerks, but they seem to be less severe. Her eye issues also seem to be improving. So, we are hopeful that the vigabatrin is going to do the trick.

In the meantime, my mom arrived last Wednesday and has been here helping us out around the house. She has cooked some delicious meals, washes the clothes before they have time to hit the bottom of the hampers, and has been working with Alli on spoon feeding. She has also been busy with Samantha working on letter sounds, phrases, and short sentences. Her retirement certainly didn't last long.

Alli had physical therapy yesterday. They are seeing improvement in her head control and her sitting. Today we added a new specialist to our regimen. We saw Dr. Berland at the Thomas Eye Group. He will monitor Alli's vision during her vigabatrin treatment. His exam showed that her optic nerve and retina appear normal. They have referred her to the Center for the Visually Impaired for therapy as they think she has cortical vision impairment. New foods this week include peas and broccoli. The peas went over pretty well. She's not so sure about the broccoli.

Samantha is getting funnier by the second. She enjoys greeting people by saying "Hey baby and Hi Sweetie." She let's you know that she is ok if she falls down by asking herself "Are you ok?" She constantly reassures us that "It's fine." She also admires herself in the mirror after we put in her hair bow and announces that she's "so cute!" She is really something. She has been wearing big girl underpants for a little over a week now. We have an occasional accident, but she's really doing an amazing job of getting herself to the bathroom...sometimes just in the nick of time. School is going well. We have started to send her 5 mornings a week to see how she enjoys it. So far she seems happy and well adjusted. We are hopeful that she will continue there next year and work her way in to the primary room. We'll see what they say at conferences tomorrow.

Special Events:
Over the course of the past year there have been several events that I feel like I need to write down so I don't forget them. We have asked many people to pray for Alli and our family and those prayers have brought us strength and many miracles over the past few months. In turn, we have also offered up many of our own intentions. As many or most of you know I grew up in a devout Catholic household. We went to Mass on Sundays, prayed before dinner and bedtime, celebrated sacraments, said the rosary, sang Happy Birthday to Jesus before opening Christmas presents on Christmas morning, attended Catholic school, etc. etc. One of the things that is unique to the Catholic Church is the notion of the Communion of Saints. Perhaps one of the most well known and universally accepted members of this esteemed group is St. Anthony, the patron saint of lost causes. We pray to him when we've lost something - "Dear St. Anthony, please look around. Something is lost and cannot be found." St. Anthony and I have a long standing relationship. He's helped me find everything from my David Yurman bracelet lodged under the back corner of our washing machine to my car keys on mornings when I'm running late. I often refer to him as the Captain of my army of saints.

How is this relevant to my angels? Well, over the course of the past year, we have recruited some new saints to our army. The first saint we added was St. Raphael. Among the many things St. Raphael is known for, he is often associated with healing. He is officially the patron saint of medical workers. So, during my pregnancy I blessed my abdomen regularly with St. Raphael's oil and once Alli was born I blessed her regularly with the oil. I have also blessed Samantha from time to time with the oil. Though Alli clearly wasn't cured of her afflictions - she hasn't contracted a single illness which would further complicate her medically fragile condition. I like to think that was our compromise with St. Raphael. I attribute this to him because we have had several situations where both girls have been unknowingly exposed to highly contagious illnesses - everything from colds to strep throat, to hand, foot, and mouth disease. Further, Samantha has been in school since August and hasn't brought home more than a runny nose and cough - which has not passed to Alli.

The next saint we recruited was St. Joseph. St. Joseph is the patron saint of families. He is the saint you go to when you've lost your job. More recently he has been sought after by people trying to sell their homes. I introduced myself to St. Joseph when we received notice from our tenant that she decided to take a position in Florida and would need to terminate her lease. After weeks of looking for a tenant to sublet, I took myself over to our local Catholic bookstore and picked up a couple of St. Joseph's kits. I brought them home and keep one in our desk drawer with a handful of prayer intentions enclosed and took out the St. Joseph from the other kit and put him on the shelf in our living room. I asked him to please send us a tenant or someone to offer a fair price for our condo. The next day our tenant called to ask us if we would be ok with her younger brother assuming her lease. He is a recent graduate and would be starting a job with Delta. He really likes our condo and would like to move in. Since then he has found a roommate and we are hopeful that they will stay awhile. St. Joseph is currently working on a number of requests from me.

Finally, as you may know by now, I left my job with Deloitte in November. Though this may seem counterintuitive, even this was an answer to prayer. The firm went through a round of lay-offs in the fall. They offered me an opportunity to move back in to federal tax, however given Alli's pending surgery and uncertain medical condition, I decided to accept their severance offer. I communicated that to the firm on Friday and Alli was first admitted to the hospital that Sunday. So, I have no doubt that was the right decision. I am hopeful that I may be able to go back to work at some point, but am finding my current work both challenging and fulfilling. So, we'll see what is in store down the road.

So, when people ask how we do it...we're not doing it alone. We have help from co-workers, family, and friends and we have our growing army of saints. Your prayers are strengthening us and helping us to meet the challenges set before us. Please know that as you pray for us, we are praying for you.