I had a pretty rough day on the 30th of Jan. We had 3 important medical appointments that day.
In the morning we met with the geneticist who had to explain the Chromosomal Microarray Analysis (CMA) Report which showed a Loss of cytoband Xp22.33/Yp11.32 and an absence of heterozygosity 2q32.3q33.1 which if you really ask me what it means, I have absolutely no idea, hence the appointment.
Hmm.. i went to that appointment hoping for an answer.. I’m searching for a diagnosis coz I really need to know what’s wrong with my precious baby boy. Instead, there was no conclusion, not even a slightest clue. So, we were offered to do an even more in-depth test, the Whole Exome Sequencing Test (WES).. we had 2 options. Pay $5,000 and get the results sent to US and know in 3 months or so, or, pay very very minimal and let it run as a research test here in Singapore for years. Erm, i did not decide because there is a very high chance I will not find what I am looking for. It can simply be unexplainable. The CMA basically looks at the Number of books on the shelf. The WES looks for the spelling errors in the books. But, it is a lot of money honestly. And it will not change what we are doing for him. The therapy continues, the care continues, the love continues. So, should I go on this witch hunt?
The next appointment was our first Speech (Feeding) Therapy session. It was a very huge eye opener for me because apparently Aaron has very poor feeding habits. He doesn’t chew, maybe coz he doesn’t know how? Or, his hypotonia makes him lazy? Or, maybe we have been feeding him the wrong foods (porridge/baby food) or the wrong way (spoon feeding?) By the end of that session, i was feeling very rock bottom.
Our next appointment was to pick up his pair of Ankle Foot Orthosis (AFOs). This was not a must have that his physiotherapist insisted we get but it was more something I researched online and found it helpful to “assist” children to walk. (Think Forest Gump!) It is a leg brace kind of thing and it can help his pronation of his feet but it was not recommended because it might make him have an over reliance on the aids to walk. I went with the HOPE that once he puts them on, he walks. And boy was I disappointed. Not only he didn’t walk, he hated them on his feet and decided not to even bear weight and stand in them!
So here comes the strangest part of the day. While we were having the AFOs fitted, this lady walked in with her Daughter. And she started to observe Aaron. She approached me and started telling me all the issues she sees physically that is wrong with Aaron and also all the things that I know (GDD, cognitive delays, speech delay etc). So i was trying to wrap my head around what she was saying because for that moment, it really felt like a fog lifted and someone actually understands and is telling me what I want to hear, like.. the diagnosis, the treatment needed, the difference it would make in our lives. Its like God finally has time for us, sends an angel and tell me not to worry and trust that God will fix him.
Flip side, it might easily be the Devil’s work, coz it is merely unorthodox and that lady was trying to do more harm than good. Why do I say that? Coz, she’s a chiropractor.
Chiropractors have a bad name. They are always known as “quack Doctors”. They usually promise that they will change the world, maybe, maybe not. So who sent her? What have I got to lose? Is she a Friend or a foe? Can I trust her?