We finally have a diagnosis. And before I say anything, please be use caution if you feel the need to share something off of your google search with me.
At some point in my pregnancy I was exposed to a nasty parasite that left me without a single symptom but did not spare the same for my growing baby girl. We believe I was exposed through cross contamination of raw meats or uncleaned fruits and vegetables.
You may ask..
Did you eat raw meat?
Did you not clean your vegetables before you ate them?
And your answer is heck no!!
I’m maybe the MOST cautious pregnant woman I have ever known and an overwhelming amount of my friends and coworkers would agree. This is a prime example of how you can literally do everything in your power but sometimes things will happen. I thought since losing Sawyer, I wouldn’t endure another pregnancy complication but I was wrong. Something I’m working through- just exposing my raw feelings here.
With Sawyer’s loss I was able to lay my head on my pillow every night and be thankful that I knew her passing was not a result of anything I did and I didn’t have to question myself on any silly decisions because there were none. So because of that, I was super strict with my subsequent pregnancies.
This parasite I spoke of above is called toxoplasma gondii and Demi’s diagnosis is congenital toxoplasmosis- meaning she was exposed in pregnancy. This parasite made its way in to my uterus and attacked Demi’s eyes and neurological system. Its not commonly tested for in pregnancy and typically the woman’s first exposure is the one you have to be cautious of. So many “if only’s” but one is- if only I had symptoms- we could have tested me.. maybe? It’s possible. But there weren’t any so wasting time in the “if only’s” does me no good in moving forward and being strong for Demi and it certainly does nothing for Demi. So we don’t really entertain that. I’m simply stating that in the event anyone reading has a question concerning that.
Demi has a wonderful team of doctors that are doing their best to give her the best outcomes she can have. There is no “treatment” for this. What’s done is done so to speak. So we are working with how we can improve anything for her moving forward. The neurological system is an interesting thing as it’s pretty hard to know what’s to come in the future. You can’t really be “sure.” So it’s pretty simple, we have the highest expectations for Demi and don’t really want to speak any less over her and will continue to ask God to make miracles happen for her!
We will see an eye specialist in July to see if he can remove some scar tissue in her eye or eyes (if we are so fortunate) so that she may have some vision. Demi is currently on 3 medications that have been proven to help children with her diagnosis have less neurological and developmental complications. This is a year long medication process and it’s already making her tummy super upset. She currently gets 3 doses a day every day of the week and 3 days a week she gets a 4th dose. This is a lot, and it’s a pretty pricey drug regimen but we will do anything for our girl.
She already has occupational therapy and physical therapy lined up! Visual therapy is next. We have weekly blood draws for a while to see how her immune system is handling everything. We have high hopes for these meds for Demi and we are working on developing what our new normal routine will look like.