Our Tuesday and Wednesday
Yes, I know that’s a really boring, stupid title. But my brain is way too tired to be creative tonight.
It has been a crazy 2 days to say the least. I’m almost too tired to even write any of this, but writing is how I deal with things and I know I will feel better when I finish this post.
A few days ago, the neurologist’s office called; some of the blood work results came in. There were two things that were elevated: lactate and pyruvate. Doctor wants follow up.
I became a Google Monster over the weekend, something I have been very careful to avoid doing in months and months. Anyway, I don’t know what search term or website led me to sites about Cerebral Palsy, but there I landed. I think I looked at all 257,235 websites about CP and became convinced that’s what Grayson has. The description of CP fits him to a tee. I even found one article that said a red flag of CP is when a baby rolls over very early, and the parents are mistakenly proud and think their child is an overachiever. Grayson rolled over when he was 3 weeks old (and yes, I posted the video on Facebook).
Tuesday, I started Bible study for the year and Grayson went to the nursery to hang with his best buds Larkin and John. I was thrilled because I was thinking G would be “left behind” in the baby room while Larkin moved up to the crawler/walker room (they are 6 days apart, John is a few months younger), but all 3 boys were in the same class. After our session, we were talking and the subject came up that Grayson really never gets sick. It’s true, despite all his developmental issues, he is generally pretty healthy. Um, yeah, NEVER talk about how your kid never gets sick unless you want them to get sick. I picked Grayson up at noon and noticed his swollen, red, green-goopy eyes.
Took him into the pediatrician- viral eye infection. Today- much worse. My sweet baby boy just feels crummy. His eyes are oozing and red, and he’s been crying pretty much nonstop all.day.long. And we had our neurology follow up this afternoon.
Thank goodness my sister Rebecca is in town and agreed to
hold my screaming baby occupy Grayson while I talked to the doctor. It was a very, very good discussion. Things we discussed (bullet-pointed, as usual)
- We may need to look into a feeding specialist/doctor since Grayson is not swallowing his solid food (have I mentioned this? Oh my goodness, it’s driving me nutty. He stores all his non-pureed, chunky food at the roof of his mouth but won’t swallow it).
- He drew diagrams of the Kreb cycle (I told him if he was going to teach me biology to make it the junior high 7th grade life science version) and explained that something is moving too slow and the lactate and pyruvate are building up.
- The lactate and pyruvate being high are not dangerous in and of itself but indicates a mitochondrial/metabolic/genetic disorder.
- We need to keep retesting his blood (boo!) to establish a pattern.
- The genetics appointment in November is key- we will hopefully get a lot of information and some more missing pieces to the puzzle.
- I asked him if he thinks Grayson has a disease with a name. Answer: yes, we will probably find that he has something. But it will probably take years. My friend Traci said when we do find the answer we should sell G’s story to Mystery Diagnosis. Our luck by the time we get a diagnosis, that show will be cancelled!
- I asked him- Grayson doesn’t have Cerebral Palsy does he? The answer- yes and no. He said CP is an outdated, old term describing a lot of disorders of movement, tone, neurology, reflexes, etc. He said it’s more of a descriptive term than an actual disease. He said it’s most useful for coding things for insurance- if Grayson ever needs physical therapy and needs a diagnosis for insurance to pay for it, he will code him as CP. So we can say he has CP, but it’s not a deep enough answer- we need to keep digging for the “why” not just a description of symptoms.
I’m glad I went in today. I always feel better when I have information and answers- I do not like not knowing. We have another appointment with him in October- over Skype. Technology is everywhere!
Now I just hope sweet G-Man feels better by tomorrow- we have PT in the morning and fun plans the rest of the day!
Glad it was a good appointment and he sat with you to discuss and draw and answer questions. Always better when we feel like we are being heard and leave with good information. Sorry about the eyes, I hope he wakes up tomorrow feeling better and happy. NO fun at all!!!
You've had two overwhelming days. I hope your Thursday is MUCH better – wink, wink!
Bless your heart, girl. I hope G Man gets to feeling PRONTO. All these sick babies – no fun for them or us! And I am so very happy that all our boys are still in the same class! I love them growing up together. Glad you guys are starting to see some answers forming – as always, you're in my prayers!