May 24, 2020

“Many are the afflictions of the righteous, but the Lord delivers him out of them all.” Psalms 34:19

Sophia’s GI doctor suggested a few solutions to increase her calorie intake: we can add a powder that was high in fat to her food and milk. He also suggested 2 kinds of medicines, one that had some very serious side effects to the brain (we can’t remember the name now, but we said no as soon as we heard about the side effects). The other medicine was an antibiotic, which was supposed to cause the muscles in her stomach to contract and work extra to hopefully allow her digestion to speed up. Finally, he advised that if none of these options work, we may need to consider inserting a Gastrostomy Tube (“G-tube” or “Feeding Tube”). One of the many things we were warned about when Sophia was diagnosed with Muscular Dystrophy was that there were increased risks associated with Sophia being fully sedated for surgery, so we were against the G-Tube option. We all agreed to start with the least invasive solution which was the powder and we will visit him in two weeks to monitor the progress. We also saw the cardiologist and his plan was to do an echocardiogram, ultrasound to check her ejection fraction, and a heart monitor every year. 

We tried the powder in her milk, pancakes, popsicles in any food you can imagine that she eats. The result was she discovered that her milk and food tasted different and she was getting full quicker meaning she wasn’t able to finish her regular portion. Of course, when we went back for the 2-week visit the doctor, he noticed that she didn’t gain any weight so we explained to him that the powder solution didn’t work. Th doctor then revisited the subject of the 2 different medications again. We were still against the medication that could damage her brain. So, he suggested the antibiotic, but I was very hesitant once I learned that Sophia would need to remain on it for the rest of her life if it worked. I told him that I was concerned that we will be damaging her immune system and she wouldn’t be able to fight any infection that she might catch. He said that it was our only non-invasive option at this time.  I was mad at him because I kept on insisting if we can identify what the problem is, we will be able to find the solution. He had the same answer which was we can’t identify the problem because of her condition so we need to try whatever we have that might work. 

We got the medicine and we started giving it to her. The only side effect that he said might happen is that it might cause her some cramps. We didn’t experience that side effect thank God but we noticed a huge decrease in her appetite to the extent after 5 days she wouldn’t take more than half a cup of milk all day. Sophia loved milk, because it was easy to drink and digest. So, we kept on searching all the side effects of that medication and sure enough, we found out that one of the rare side effects is a decrease in appetite. I stopped the medicine right away and reached out to the GI doctor and asked him about this side effect. He advised that loss of appetite is a very rare side effect and that he had never seen it with any of his patients in all of his years of practicing medicine. I told him well guess what my daughter’s condition is a very rare condition, so I am not surprised. After we discussed everything with him he said we don’t have another choice other than surgery for the feeding tube. I asked if we can give it a little more time to see if there is anything we can do to get more calories into her.  This was around the end of December 2016. So, he scheduled to see us in the beginning of February 2017. 

During that time, I ran to God again but through Sophia this time. I taught her a very small prayer and we started practicing every night. Here is her prayer: “Thank you, Baba Yasou (Jesus), for everything, please help the poor, please heal the sick people, please watch over us and please forgive us. Amen” I do say this prayer every night up till now. It’s very comforting. 

I was determined to help her gain weight so we don’t have to go through surgery. So, I got creative with the food that I cooked. I tried finger foods, snacks, regular meals, and anything that can cross your mind. I was trying to feed her all day long. I used all of the tricks that moms use to feed their kids. It was very tiring and I couldn’t imagine that this is how life will be. But I didn’t have another option. 

One day, we were all hanging out in the living room and we noticed Sophia waiving towards the laundry room door, but none of us were standing there. So, we asked her, “who are you waiving to” and she said “Abouna” (Priest). We looked at each other and John said, “Abouna (Father) John (our priest from our church) is not here (that’s the only Abouna Sophia knows).” Sophia said, “no it’s not Abouna John.” I thought of Saint Pope Kyrollos but I couldn’t imagine that this can be true, even though something inside me believed they had a connection, because of my dream. So, we showed her a picture of Saint Pope Kyrollos that we have in our bedroom and she said: “This Abouna.” 

It was a huge blessing, we all were shocked but we also know that all children are angels. But the question I had, why would Saint Pope Kyrollos appear to Sophia? I ran to the library at our church and looked for a picture for Saint Pope Kyrollos so I can hang it in Sophia’s room. There weren’t any pictures available, so they ordered one for me. I ordered a small one so I can fit it in Sophia’s room, but when I received it, it was huge, the biggest I’ve seen. I took it home and it fit perfectly in the space between Sophia’s bedroom door and closet door. As soon as I hung it up on the wall, Sophia said, “Baba Kyrollos.” She recognized him immediately although she saw him just once, or so we thought. So, I had to ask her, “did he visit you again?” Sophia said, “yes.” Over the next few weeks, we started seeing Sophia laughing, playing, and kissing the headboard of her bed by her herself and when we asked her, “who are you kissing?” or “what are you laughing at?” She would answer, “Baba Kyrollos, he is so funny.” The only explanation I had for all this at this time is, Sophia is his child.  Remember when God answered my prayers through Saint Pope Kyrollos’ intercessions and I found out that I was pregnant, I told Saint Pope Kyrollos “this is your child.” 

Lessons Learned:

• God has the perfect plan, even when we cannot see it
• God always hears our prayers

PLEASE NOTE – for all of the “lessons learned”, we did not always see it that way during the events that were occurring which are mentioned in the posts. Many of these lessons were learned weeks, months, or even years later when we looked back and reflected on the circumstances.