One trip to Boston- $600 in copays, lodging, food, entertainment & fuel- 2 irritable children- not exactly priceless...
...But, all the medical news was good. I'll start at the beginning. We left just after 5am...moved along at a good pace, until we got past I495...then the traffic started...then the panic set it, we were going to be late for our 9am appointments. Jeff pulled off at a rest stop so I could hop in the back. I changed two kids out of pajamas, into clothes at 30 mph. I DON'T recommend this to anyone, especially since Connor peed in his carseat. Thank God we have a third carseat in the van. So we managed to only be about 20 minutes late for our appointments. Austin went to ophthalmology with Jeff and I went to neurology with Connor. Austin got to ophth, realized Mommy wasn't with him and started crying and asking to go home...managed to get a cursory eye exam done...Dr Fulton was happy with the results on it. Of course Connor's appt was on the 2nd floor, which required an elevator ride...so I struggled to carry the 50lb diaper bag, 2 sets of MRIs and a squirming, screaming kid. I was sweating profusely by the time we made it there. But Dr Riviello was very happy with Connor. He said the 30 minute EEG was normal, the TS skin test was negative and he thought neurologically he looked good. He did however recommend genetic/metabolic testing. I said I had already had a celiac's test done, he was happy about that. He also specifically requested the TS test be done and Fragile X testing. I know about Fragile X, but not specifics...I will post more about it when I do. I do know that the female is the carrier. Based on this, Dr R also recommended that Aaron be tested. (Karen I will talk to you more about this and his reasoning) If his development stalls again though, he recommends a 24 hour EEG.
Austin managed to make it to his 10AM neuro appointment on time. Dr Riviello was so pleased with how well he is doing. We talked about future plans. The concern of course is if the Vigabatrin starts to affect his vision, then we need to get him off it. We talked about Gabatril and Tiagabine. Both are GABA drugs (like Vigabatrin) but they work in a different way...not going to bore you with the pharmacological differences. The hope is these would be as successful for Austin. However, if his eyes are okay, then we will leave things be. The only question will be, as Austin gains weight will he start to self wean himself from it and will we see EEG activity increase. When we put him back on the Vigabatrin in September he weighed 15.5 kg (34lbs), so at a dose of 1000mg a day, he was at 64.5 mg/kg. He weighed 17.3 kg (38 lbs) at the drs office Wednesday, so he is now at only 57.8 mg/kg. We'll keep an eye on this. The plan is to repeat a 24 hour EEG in September.
From neuro we went to his anesthesia consult. This is the same office as admitting and pre-op testing, so it was very crowded. Austin and Connor played well though and got to intermix with kids of different nationalities. We even met a family that had four generations sitting there...of course Great Grandma didn't appear to be more than 60 and the kid was about 5...you do the math on that one! Also, we had a celebrity in there. Do any of you remember the Extreme Home Makeover they did for the Boston family...they built a baseball diamond in the kid's backyard...major Red Sox fans?? Well that little boy was there. Anyway...we finally got out of the hospital around 12:30, hit McD's at the food court next door and headed for the aquarium. I was smart enough to print directions there.
The kids got about a 10 min nap on the way. They seemed to have fun, but Connor didn't want the stroller, didn't want to be carried and didn't want to hold anyone's hand...fun! Then we went to the 3D IMAX- Deep Seas. Connor refused to wear the glasses, Austin thought it was okay...until the giant squids attacked the camera. $30 for parking and 2.5 hours later, we were on our way...ALTHOUGH, I wasn't smart enough to print return directions...so, rush hour traffic, no directions...hour long car ride to the hotel...nough said.
I was never so happy to check into a hotel...until we found out no one would deliver food! so I made Jeff walk, he wasn't thrilled, it was rainy and cold, but the town was really cute. We were in 'dowtown' Brookline. Kind of reminded me of Saratoga. Kids crashed at 7pm, we crashed at 9pm...up by 5 for meds and back to the hospital for Austin's ERG. Poor kid started crying "I want to go home" as soon as we step foot into pre-op holding. It took me about 20 minutes (and Little Einsteins) to calm him down, but he refused to be weighed, or have his BP taken. We finally managed to get some Versed into him, then managed to pry his eyes open for dilating and numbing drops. Finally we got him to the 'OR'. An hour later, Dr Fulton appeared. She said he looked great, his retina response is on target for his age...things are good, we are to go back in 6 months for another. Then came the recovery room. I had to keep him from touching his eyes for 30 minutes, no big deal since he was still out. Then the nurse decided to do a BP check...well he woke up and it went downhill from there. He freaked to put it mildly (maybe the had dreames about the giant squid). The nurse finally decided to release us. She asked if she wanted her to go get Jeff. I thought I could handle it and said no. So I walk to the waiting room, with a screaming, flailing 38 lb kid in my arms. And Jeff and Connor were NO WHERE TO BE FOUND!!!!! Finally my cell beeps. Jeff had texted me to say he was downstairs and to let him know when we were ready. I typed back done, assuming he'd come upstairs, Austin grabs my cell (my NEW pink razor to be exact) and throws it across the room. Then the nurse comes around the corner and says she followed the screaming, I had forgotten to sign the release papers. So I scrawled something close to a signature on the papers. And the nurse asks if I want a wheelchair for Austin...I look at her as if she's grown a third eye, as she smartly says, oh that probably wouldn't help. She leaves and I sit contemplating how long it could possibly take Jeff to get up the the third floor. Then he texts me again and asks if I want him to come upstairs. I manage to type in NOW, before Austin throws my cell again. About a minute later Jeff comes careening around the corner with the double stroller and Connor with a look of horror on his face and a HUGE I am so sorry comment. I throw Austin at him and head for the elevator. Now mind you, Jeff is trying to control the screaming, flailing child and I am try to calm Connor down for the elevator ride. We had so many looks of pity from the other riders. We finally managed to get out of the hospital, I took Austin back to give Jeff a break, get to the parking garage, go up in the elevator and get to the van. It took both of us to hold Austin down and strap him in. By now my muscles in my arms and back are quivering from restraining the child.. I've been kicked, and punched and beaten. And I just want to get on the road...I assure myself that the drive will lull him to sleep, 20 minutes later he is still screaming. And then quiet descends on the car...I look back to make sure he is still breathing, he's beet red and trying to get a breath. Jeff and I are holding hands...could this be it, could he be done????? I then make the mistake of pointing out the purple T to Austin...WHAT THE HELL WAS I THINKING?!?!?!?!? He, of course, didn't like the purple train and started screaming again. Jeff steps on the gas and past the purple train...another 10 minutes later and he was asleep...THANK GOD we were on our way home.