May 17, 2020
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10
With all the bad news we were informed with, we felt we only have God to run to. He is the only one who can do the impossible. If there is no cure, it doesn’t mean that’s the end. With God there is always hope. I ran to Saint Pope Kyrillos and prayed and asked him for help and his prayers. I started praying every night and was begging God to heal Sophia. Honestly, deep inside of me, I knew that God will not heal Sophia now. This was a really big deal that was not be going to disappear overnight, not because God can’t, but because I felt that there was something big behind it. So, I figured that until we know what’s behind this, I’ll keep praying that God will listen to my prayers. For almost 2 weeks, there was no response from God until I went to sleep one night and I saw Saint Pope Kyrillos in my dream. He was sitting down dressed in his gold Tunic and had his gold crown on (see picture below) and I was standing up holding Sophia and all of a sudden Sophia was sitting on his lap and they were talking. I didn’t hear what they were saying. I didn’t talk to him nor did he talk to me. Then I woke up. I was so mad at myself, how come I didn’t speak to him, how did I lose this chance to ask him to heal her. I told John and everyone in the house about my dream. I was happy because I felt that it was a great sign. I felt that God was listening to my prayers, He didn’t forget about me, and that He will heal Sophia, but wants me to be patient. We all felt that in order to be able to defeat this fear we all were in, we need to stick closer and closer to God. Thank God, Sophia was very advanced in her speech, therefore I started to teach her how to pray. Her doctor believed the reason why she was so advanced in her speech was because of her Muscular Dystrophy and explained that when someone is weak in something, they advance in something else.
We started the medical journey. They set up the schedule of Physical therapy and Occupational therapy. We had 2 sessions every week. They had to get to know Sophia and she needed to be comfortable with them. Everyone was super nice and kind. Their goal was to strengthen her muscles so she can have a semi normal life. The location was 15 miles away from home, so they did both sessions back to back on a Tuesday so it can be easy on Sophia and I. We scheduled an appointment with the cardiologist, so we can monitor the heart.
The Pulmonologist was pushed out until she turns 3 or 4 years old, because she was too young to go through these tests. We also attended the first appointment with her GI doctor, and we got a case manager assigned to Sophia that had to go over everything Sophia eats every day. Then we discovered that her calorie intake is barely 700-800 calories a day, which is very low for her age. And they said she needs to be at least at a minimum of 1000 calories a day. So, the doctor said before we take any route we need to know what is going on in her stomach. I asked the doctor can it be the muscular dystrophy effect. He said, “no, this type of Muscular Dystrophy doesn’t affect the stomach muscles.” Remember because the Muscular Dystrophy and its effect on the heart and lungs muscle Sophia can’t go under anesthesia unless we absolutely have to, so endoscopy was not a good option. Our best choice was to do a test which requires that she eat a small portion of food with radiation, then monitor how the food was moving through her stomach which she is strapped down under a machine for about an hour. I went numb, I couldn’t imagine the day will come where I was intentionally feeding my child something that contained radiation. We tried to consider any other option, but this was the next best thing to try and figure out why Sophia wasn’t eating enough to sustain her growth. We had to come up with a plan. She needs to be hungry before we go, so we can make sure she will finish at least most of the food they will provide and she needs to be entertained while being strapped for an hour. If you are wondering why they had to strap her? Because she had to lay down still so the pictures can be clear enough to see what’s going on in her stomach. My brother and his wife wanted to come with us so we can take turns entertaining her. They allowed us to take an iPad so we can play her favorite songs which was a huge help. We finished the test and even though there were some heartbreaking moments when she cried and asked us to carry her, she did pretty good for being only two years old. We went to see the doctor to get the results of the radiation test. The result was: there is a very tiny delay in digestion but it wouldn’t cause her not to eat. So where is the problem? The doctor said that we can’t say for sure what the problem is. Are you kidding me, we went through all of that and we still don’t know what the problem is. This was the beginning of a big problem between me and this GI doctor.
Lessons Learned:
- God will always protect His children
- God is always by our side, even when we don’t feel Him around us
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.
