It’s been a busy week. It’s funny how my definition of “busy” has changed so drastically in the last year. A year ago, a busy day consisted of a full day of teaching, then a few hours of work at Waggin’ Tails, finished off by a drive into town to tutor- all of this while pregnant. Was I nuts?!
These days, “busy” is a day where we have more than one activity planned. Most days, I get to 6:00 and think, what have we done all day that we are this wiped out?
This week, I was lucky enough to have 2 non-Grayson outings. Monday, I helped a friend (who I used to work for) take embroidery orders from a high school drill team. Afterwards, we went out to dinner and it felt wonderful to be able to relax and enjoy good food and conversation. Wednesday, I went with Denise from WT to the BBB Awards luncheon. Again, just nice to get out of the house and be reminded that not everyone in the world spends their days being drooled on- not that I would want to trade places with anyone who wears a suit and heels 5 days a week.
Thursday, Grayson had a doctors appointment with a new opthamologist, we had lunch with a friend who lives near her office, and then therapy later in the afternoon. I really liked the new doctor, much better than the first opthamologist we saw, but now I am just even more confused. This new doctor does not think G’s optic nerves are hypoplastic- she said they are on the small side, but are perfectly formed and functioning. She also does not think he has cortical vision impairment, which is what G’s vision teacher suspects. I have been reading a textbook on CVI, and G could be the poster child for it, according to the symptoms. However, he has nystagmus (his eyes shift back and forth when he looks at something) and she said nystagmus does not indicate CVI. Then she throws out that she suspects he may have Ocular Albinism- something that has never been mentioned. Ocular Albinism only occurs in males (although girls can be carriers) and can be indicated by light eyes, fair skin and hair. Ok, that’s G, but I am fair skinned, and Ryan has light hair and eyes. The good news is if he does have Ocular Albinism, just from the little research I’ve done online, it’s not as big of a deal as Optic Nerve Hyploplasia. The opthamologist said she would definitely label G as vision delayed but is optimistic about his vision developing.
Great news, yes. BUT- why can’t any two doctors tell us the same thing? How am I supposed to believe this doctor when I get a different diagnosis (or lack of diagnosis) everywhere I go? I have one other appointment scheduled for this month- with a neuro-opthamologist. I’m torn whether to keep it- I think I will go crazy if I hear one more disease or syndrome my son could possibly have. And the thing is- there’s nothing else we can do right now other than what we are already doing. What’s going to another doctor going to do, other than cost us another co-pay and confuse me even more?
Then, yesterday morning while we were at the doctor, the neurologist called and left a message to please call. I had a lot of anxiety all day yesterday because I kept calling and calling and only got voicemail. I thought it would either be EEG results (they told me they would call if it was abnormal) or blood test results. FINALLY, they called me back this afternoon- to tell me that TCH called them and they need MORE URINE. What?! We have to go back to TCH a THIRD time for this one order? AAAA! Well, at least it’s not blood. I think I would have had a breakdown if they needed more blood. Then, we were about to hang up and I asked about the EEG. She put me on hold for a minute and then said, “Oh, he hasn’t read it yet. I’ll put that on his calendar.” Again, What?! So much for no news being good news. Lesson learned- I can’t assume doctors (even ones I really like) are going to follow through on anything. I have to learn to be pushy, and demand answers. So yes, I will be calling next week to find out what that EEG shows.
This post is already a novel, but I have to brag on my little boy- this week, Grayson started grabbing toys in front of him! This is a HUGE accomplishment for him! He doesn’t grab everything, but if I put his favorite toys in front of him- his rattle or his cow- he will clutch them and bring them to his mouth. Go Grayson!
Man, you're not kidding! All we did today is have a lovely visit with you guys, and I'm EXHAUSTED. It was wonderful to catch up with y'all today. And I am so impressed with Lil' G – he's grown so much in the last couple of weeks. Plus, he looked like such a big boy in his Bumbo and that grabbing thing is awesome!
Sorry about the conflicting diagnosis, that has to be so confusing. So glad about his new skills and grabbing at toys, so so great!! Whoo hoo for great progress!
ugh i can see how dealing with all the different doctors / specialists can be exhausting / overwhelming / frustrating. hopefully this will be figured out soon. congrats to grayson for his new skills!!