Alli has been working her way through an upper respiratory infection. It was bound to happen at some point. While I'm sure some of you are referencing my earlier post and wondering where St. Raphael was in all of this, I have to say that Saturday afternoon Alli started running a fever. It was 102.8 under her arm and 103.8 rectally (I am the person who checks to make sure the thermometer works and insists on the rectal temperature...as if Alli doesn't already have enough going on). I ran out to get some dye free tylenol (at the advice of another mother whose child had infantile spasms and warned me about red dye and the potential to trigger seizures in people with epilepsy). I came home documented the previously discussed temp, blessed Alli with the St. Raphael oil, and gave her her tylenol. Her fever never came back. Say what you will...maybe it was the tylenol...I think it was the oil. Since then, she has been struggling with nasal and chest congestion. The nasal congestion has been particularly problematic, so we have reverted back to feeding her via the ng tube.
My start date with UPS was moved from Monday to Wednesday. So, I was blessed to have another couple of days with the girls. Monday was a good day. Alli was smiley and happy. I even managed to capture her on FaceTime with my parents so they could see her breakthrough in personality. We had a quick trip to the pediatrician to discuss said upper respiratory infection. All was good. Then, it was like she slipped right through my fingers. By Tuesday, Alli's smiles were gone. She was still having spasms and she was starting to withdraw. She was pretty out of it during her physical therapy session Tuesday afternoon and was barely awake during occupational therapy on Thursday. The doctor has increased her seizure medication to 750 mg which makes her pretty tired. Over the course of the past few days we have seen glimpses of her personality coming back, but they are pretty short lived. I am hopeful that the latest increase in medication will knock this out. We have an eeg on Thursday to check the status of her hypsarrhythmia. I am praying it is gone.
Samantha is fully embracing the spirit of being 2. Lately she enjoys screaming and jumping - sometimes she enjoys doing both together. Everything involves jumping. We're trying our best to work on inside voices, especially while Alli is sleeping or around the time that we give Alli her meds. Her latest quips include "so funny!" and "whatsa going on?" (I think maybe we've been watching too much of the Real Housewives of New Jersey). The former she uses in context when we laugh at something she does. The latter, in and of itself, is just cute and funny. She often walks in to the room and asks us "whatsa going on?" I crack up every time. We spent Saturday morning planting flowers, vegetables, fruit, and herbs in her garden at school. It was a wonderful way to enjoy the beautiful spring weather we have been having.
As for me, it has been a mixed week. I definitely had days where I wanted to pull the sheets over my head in the morning, go back to sleep, and pray that these struggles with Alli would miraculously be over when I woke up. I had a lot of those mornings. My start at UPS has gone well. Each person that has greeted me has always asked right away how Alli is doing. If it wasn't the first thing out of people's mouths, it was definitely the second. They have been so kind and understanding about her needs and their impact on my schedule. It has been nice to have something else to focus on. Megan T. has done an admirable job of taking on Alli's challenges. It can be difficult at times to manage Alli's feedings, especially on days when she doesn't tolerate them well, but Megan has really stepped up. We are so lucky to have her. In the midst of all of this I started (and finished today) a novena to St. Padre Pio. I started the novena in hopes that he would intercede in bringing the end to Alli's seizures. However, over the course of the nine days, the prayers and reflections brought a different perspective to the struggles we face with Alli on a daily basis. Specifically the 5th and 6th days of the novena. The prayers on Day 5 ask for an increase in suffering in order to convert and save sinners. The prayers on Day 6 convey the willingness to take on suffering in order to free someone else of their suffering. Both days resonated with me. Though our days can be difficult, each day we find the strength to meet the challenges set before us, even the days where we think we can't possibly bear seeing another spasm or waiting out the meds. Every time I think she is getting better, only to see her have a spasm, it is like someone is squeezing my heart. All that being said, if I knew that those days took suffering away from my loved ones, or would lead to the conversion of those that are close to me, I would find the strength to continue on and persevere through them.
I am hopeful that the week ahead will bring us good news. Please keep us in your prayers, especially on Thursday! We will continue to pray for you, as well!
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