The neurodevelopment appointment led to an orthopedic appointment. This is happening today. There will be talk of surgery involving Cody’s Achilles tendon. Hopefully a very-in-the-future surgery.
The neurology appointment led to scary conversations about epilepsy (we found out they stop classifying seizures, even with a fever, as fibril after the age of six and start viewing them as a possible life long thing: epilepsy) and a goal of keeping Cody’s seizures at two or less a year. Oh and they must be associated with fever. As if we have any control over any of this. There are whispers of daily anti-seizure medication. These whispers turn my stomach and make my palms sweat.
The neurosurgery appointment led to a urology appointment to discuss if there is subtle tethering of his spinal cord. Talks will follow regarding urodynamic studies. Scarier even, are the talks that have already occurred about a surgery to remove two small fatty growths on his filum, the connective tissue at the end of Cody’s spinal cord.
At least his shunt looks find.
Husband and I have lots of decisions to make, lots of medical pathways to untangle, stare down, and hopefully pick the right one to walk towards. We don’t want to overwhelm Cody and his live with nitpicky medical procedures that may or may not improve his quality of life. His quality of life is pretty darn good as it is. At the same time we do not want to overlook or misunderstand an opportunity that can provide him with more.
So as all this rumbles through my head, what do I hear the boys doing in the hallway with their blocks and stuffed animals? Cody is currently giving his stuffed rooster an MRI because something in Rooster’s tummy is not quite right and his stuffed Phineas is waiting in line behind Zebra for his turn at the x-ray machine.
Shoes On The Wrong Feet 
Oh boy! I seriously don’t know what to say. I hope everything turns out o.k.
Thank you.
you seem to be handling this – all the more power to you – maybe take a cue from Cody–he sounds like he is doing pretty darn good
He is doing great and we are hanging in there. I don’t really like writing about the more serious stuff preferring the fluffy and funny of life but since I view this blog as a sort of journal I allow myself write what comes to mind.
we are glad you share this and are there with you
I’m sending good thoughts your way that you get all the information you need to make the right decision for your son and yourself. Hang in there.
Information is good. The ortho appointment yesterday went really well and the doctor does not think surgery is needed for his leg. One down and a couple more to go.
Your son’s game is great. It is amazing how he is processing/coping. We can learn alot from kids.
As far back as I remember he plays out events from life with his toys. It in interesting to watch and listen to and gives me a good window to how he feels about the medical stuff in his world.
What a long journey..and one that may need to continue a bit further. Cody is grounded in such a loving, happy home that he is going to clear each hurdle with much greater ease than his mom who’s heart is currently somewhere in her throat. I’m sending you all positive thoughts and enormous faith that this remarkable little guy of yours is going to continue to thrive and amaze..
Thank you. Yesterday the ortho doctor started from the top, 26 weeker, 2 pounds 1.5 ounces at birth, brain hemorrhage, shunt, PDA ligation. Then he started asking about Cody’s eyes (fine), hearing (fine), respiratory system (fine), gastrointestinal problems (never had any). On and on the list of very common problems preemies face and there sat Cody just perfect as could be. Even his CP is mild. The few problems we face are just that, few, and it was a good reminder. It is, of course, still scary the situation with seizures and shunts and tethered cords but we can manage it.
Sending you all the encouragement in the world. You’re going to make the right decision because you are a wonderful mother. *Hugs.*
Thank you for your kind words. There is always self doubt with medical type decisions, I never feel like I know enough (or I know too much and the information is conflicting). We have a great team of doctors and will continue to weight the decisions and listen to our instincts as well.
Cody’s resiliency and spirit are inspiring just like his momma. Hugs to you for making it through a hard day.
Ah, thank you. I hate all this medical stuff. I hate writing about it. But it helps me process it and make the hard days easier.
I’m thinking of you and your family as you navigate your way through this. Hoping everything is ok!
Thank you. The appointment yesterday went very well. One step forward…
It’s tough when it’s one of your babies. Sending good thoughts your way. I love how Cody has processed this through play. Kids are really strong and resilient and amazing. Truly touching.
Cody is so awesome. It used to break my heart to hear him play MRI with his stuffed animals but I know he is working it out, precessing what is going on. It is healthy. Maybe I need to get down on the floor and play MRI with him too.
I’m sure that because you have Cody’s best interests at heart the right decision will find YOU. Once again, how great it is to hear what it is that the boys distill from such a day. Good luck! I’m sure it will all work out fine. 🙂
Thanks. I am continually amazed at what the boys take from our daily adventures and how they process it. Cody is a huge question asker and will ask the same question in different forms until he is sure he understands whatever it is that is on his mind. Almost every year after his visit to Children’s Hospital he plays doctor with his stuffed animals. They are two very smart boys (and I am not just saying this because I am their mother!) 🙂
Cody sounds like he has quite an analytical mind. Maybe that, and the fact that he plays doctor with his toys, means he’ll grow up to be a doctor? Who knows? But he sounds so inquisitive and curious I daresay there are many possibilities out there for a clever little chap like him. 🙂
He currently wants to be an electrical engineer, but several weeks ago he was leaning towards botanist. I just want him to be happy with whatever he wishes to pursue.
Absolutely! 🙂
it’s a good thing Cody is role playing like that it means he is comfortable!!!! I’ll be praying that things get figured out and hey at least no surgery on his foot that’s a very very good thing!
Yup, I think you are right. He is processing and coming to terms with all the medical going ons in his life by playing it out. It is a little heartbreaking to listen to and watch as I wish he never had to know what an MRI is, but I am glad he handles it so well. His next appointment is in two weeks so we have a little break.