Tanner has a lot going on right now. As most of you already know, I scheduled an EEG for last Tuesday. Our seizure journey officially began when Tanner was 3 months old. We started seeing this eye twitching....rapid eye blinking is what I call it. We had a rough time getting a doctor to witness this blinking that we had been seeing. Doctor's, nurses, Justin and I would all stand around him staring for 5 minutes straight and he wouldn't do it. The second the doctor's turned to leave he would do it. Anyway, when Tanner was 5 months old and we were at the ER at CHOP for respiratory distress a doctor finally saw it. Tanner was admitted to the Neurology floor and put on a small dose of Keppra to control seizures. When he was discharged we were told to follow up with a different neurologist (who is now his current neurologist). When we followed up about a month later this neurologist just couldn't understand why Tanner was put on Keppra without any seizure activity being documented on EEG. So, he told me to ween him off of it. Shortly there after Tanner spiked a fever after immunizations and went into an hour long tonic colonic seizure. He was obviously put back on a small dose of Keppra again. The rapid eye blink totally stopped for awhile. A few months later I started seeing them again and called the neurologist and he gave Tanner's Keppra dose a little boost. They, again, went away for awhile. About 2 months ago I started seeing them again along with something different that I also suspected was some sort of seizure activity. I took him back to the neurologist and he said he just thought the blinking was Tanner having a hard time focusing his eyes. I was not sold on this theory. I know my baby......this was beyond eye focusing. It seemed like his brain was short circuiting for a second. The new kind of seizure that I was seeing especially worried me. His eyes would roll up and his whole body would go limp.....just for a second and then he would bounce back like it never happened. So, I called and scheduled an EEG anyway which leads me to last Tuesday. It was scheduled as a 4 hour long test. The hooked wires to little electrodes and stuck them to his head and we went about our business in the tiny room. Every time I saw what I suspected to be a seizure I pushed a button and then wrote down what time it was. Within the first hour and a half I pushed that button over 2 dozen times. To my surprise, Tanner's neurologist showed up about 2 hours into the test. He said that we could leave because so many seizures had been documented. Every time I pushed that button he was indeed have a seizure. He said that they were generalized....not coming from any one portion of the brain. He instructed me to increase his Keppra dose again and give it a few weeks to kick in.
This leads me into Tanner's upcoming surgery. He is having three surgeries done on May 7th. One is a probe and irrigation for a blocked tear duct in his right eye. One is to correct his strabismus in both eyes. They will tighten the muscles behind his eyes. The last is called an orchiopexy. They will either drop his right testicle that is stuck in his abdomen into the scrotum or totally remove it if it is damaged. A damaged testicle can lead to testicular cancer. Tanner needs a special clearance from his neurologist to receive anesthesia because anesthesia lowers the seizure threshold. Problem is, is that this clearance was given before this EEG. I'm praying that the new dose of Keppra kicks in before then so we don't have to reschedule his surgery. I guess we will have to cancel last minute if we feel it's too risky. We certainly don't want to put Tanner into an already somewhat risky situation without his seizures under control.
Tanner had his annual evaluation this morning with all of his therapists and his coordinator. we talked about where exactly Tanner is developmentally. All testing revealed that he is at about a 6 months level. This was expected so I was not upset at all. Tanner is doing really well and certainly way better than I was told he would do upon diagnosis. We made some new goals and kept some that he hasn't met yet. Sitting being one of them. We're going to work hard on building his upper body strength and independent play time. I inquired about some other therapies that I've heard of. So Tanner will start to get speech therapy every week too. I'm excited to start this. With this therapy, from what I understand, we will work on mimicking sounds and actions. I think even maybe some feeding techniques. I'm sure there's a lot more to it that I don't know yet. I also requested to see a nutritionist. So, we're going to have that consult as well. She will be able to give me suggestions to boost Tanner's calorie intake. There are different foods and supplements that can be added to what Tanner's already getting that I'm unaware of. I'm looking forward to exploring these options.
Calorie intake leads me to the talks of a G-tube. Tanner had a weight check yesterday and only gained 1 ounce in a month. Dr. Katherine said we will just see how much he weighs in a month and if he doesn't have a decent gain we should see a GI specialist. She said they are most likely going to suggest a G-tube. I have mixed feelings about a G-tube. It can't be ignored that every single WHS parent that I've become friends with, whether through blogging, face book, or the listserv, say it's the best thing they have ever done for their child. They all seem to agree that it was also the hardest decision they've had to make. My dilemma here is that Tanner typically a very good eater. He does have inconsistencies but for the most part he has four, 5-6 ounce bottles a day as well as 3 solids meals at 2-3 ounces a day. Up until yesterday I thought G-tubes were for children that were not eating enough or not at all. I don't know why he didn't gain weight all month. He was sick for a week which always puts a damper on his eating. Other than that he ate great. Tanner has always had a slow steady gain in his weight since he was born. Maybe one or two small losses. On the "healthy" child growth chart he is below the 5th percentile but on the WHS growth chart he is between the 60th and 75th percentile. Is that really that bad? Is this reason enough for me to allow doctors to put a hole in my baby's belly? Honestly, I don't know. I don't know what exactly justifies the absolute need for a G-tube. I'm obviously not going to jump into anything because this is a huge decision. One point here is that when I say Tanner is a great eater....I mean when he is feeling well. He's been sick a lot though. During these times he fights every bottle. I've also heard a lot about the G-tube improving other things because kids are actually the nutrition that they need. I've heard of motor skills improving as well and physical strength and awareness. I've also heard of the G-tube improving the immune system. So, maybe Tanner could be spared his bi-weekly colds during flu season. There's a lot to think about and I have plenty of time to see how things go. I will definitely give him his fair amount of time for us to work on his weight. I probably won't even consider it until next year unless there's some dramatic, consistent weight loss or if continues to catch every little bug that goes around that prevents him from eating. We will also try calorie boosters and new foods. I ordered some very high calorie baby food that came highly recommended by my friend Hannah. It should be here no later than Thursday so I will look forward to trying that. Thanks Hannah:)
I took some cute pictures over the last 2 weeks but have not had a chance to post them so I'll cheer this rather gloomy medical post up with some super cute pictures.
Sonny and Ann Marie like to have joint therapy sessions every now and then to be sure they are on the same page. Sonny is Tanner's OT (left) and Ann Marie is his PT (right.)
My doll face
Mimi got these OH SO PERFECT sunglasses for Tanner. The frames are made of rubber and he doesn't mind them at all.
Tanner loving him some Ernie. Seriously, nothing makes Tanner's face light up like hearing Ernie's voice on the TV.
Check this one out. Justin is like a magnet. Everybody loves him. He can't sit down without one of the kids jumping on his lap, a kitten cuddling up on his chest, or all of the above.
Thanks for checking in. Much love my friends.