This has been over very stressful, exhausting week–both emotionally and mentally draining. I’ve sat at the computer a few times since my last update on Grayson and just haven’t been able to put all of this into words. I’ve been emotional and I’ve leaned on many for support in hopes that they can just give us answers or tell us what exactly is wrong and how we can fix it. Because it has to be something we can fix. It just has to be.
I’ve been pretty distant. I haven’t answered all of my text messages. I have no desire to check email. I’ve even had a hard time responding on social media. I just want to sit and snuggle Grayson. That’s all. The support and outreach to my family has been amazing. The comments on Instagram, the emails from readers, clients and friends, the never-ending support that we are eternally grateful for has gotten me through these last few days. As I am writing this, I am getting tears just thinking about all of the support.
One of my strongest traits is staying positive in the worst possible scenarios. I always have my game face on. I am known as the enthusiastic cheerleader, always cheering someone on. But this week, it’s been so different.
Grayson has gone to the doctors every day since getting out of the hospital. I’m sure you won’t be surprised to hear that we’re heading back to the pediatricians office first thing in the morning because he has a rash all over his body. I spent my afternoon talking to them and catching-up with Grayson’s gastro and pulmonologist just to fill them in as we go through everything. Grayson’s fever finally has come down but his persistent five-month long cough is still there. You can hear his lungs rattling as you hold him. He coughs like he has been smoking for 80 years and after he struggles getting up all the junk, he just smiles at you. Such a tough little cookie, that guy.
Since my update here earlier in the week, we did get some not-so-great results back. His IgG levels are elevated. Well, they are high. At least they aren’t low because that rules out leukemia, thank goodness but still–the results aren’t good. When you google “high igG levels,” things like autoimmune diseases, meningitis, cancer and other chronic diseases pop up. This is why I don’t Google. Ever. Early on an autoimmune disease was suspected because of how often Grayson has gotten sick. During his 9 months of life, he has already had one surgery (ear tubes) and has been on antibiotics 10 different times. I’m still holding out and praying for the best in hopes that maybe somehow his blood work was off. Wishful thinking right?
So let me break it down for you. IgG stands for Immunoglobulins. Per WebMd, it goes something like this:
Antibodies are substances made by the body’s immune system in response to bacteria, viruses, fungus, animal dander, or cancer cells. Antibodies attach to the foreign substances so the immune system can destroy them.
IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections. IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).
On Monday we will find out exactly what all this means when we meet with his pulmonologist after his sweat test for the cystic fibrosis screening. I am sure we will get some more answers tomorrow as well. Needless to say this is where my heartache comes into play. I am a control freak. Thinking of all the what-if scenarios and not knowing is literally keeping me awake at night. The fact that he had this cough for so long makes me wonder if things are just going to come crashing down very quickly. Spending so much time in the doctors offices really makes you appreciate the little things. Like, not fighting with your 2 year-old over her non-matching outfit choice. It makes you realize what really matters in life and how short our time here really is.
But I am scared. I am nervous. I want answers. And I want them now.
A dear friend of mine Gussy Sews sent me some scriptures to try and keep me at peace. She reminded me to let my spirit rest and be with my family. To let the tears flow because I truly can’t do this on my own. She was so right. In every way. I can’t do this on my own. For once I have to let go and not control the situation. I just have to have faith. She sent me these words; peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. I’ve read this over and over to remind myself not to be afraid of what is to come, to not be anxious about anything. It has truly helped.
This week has been so hard for me, but tomorrow is a new day right? If anyone has gone through something similar with your little one, I’d love to hear your story. Please share it with me! And thank you, from the bottom of my heart for all of love, prayers, and support.
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