Horrible trip to Portland

Friday was the girls big appointments at OHSU in Portland. It's a bit of a drive since we do not live in the Portland area, but we are used to it from having to do it countless times while I was being seen there, and the girls were there in the NICU. It'd been a few months since we'd done it though, and I so do NOT miss it. It was an awful day! I was reminded why I HATE it there so much! I think the vibe there is just not good, mostly it's just a cold and unfriendly place. They may have some of the best specialists in the Northwest, but they could sure use some training in bedside manner & compassion.

The appointment for Madelyn's swallow study was supposed to happen first @ 1:30. Then both girls had appts @ 2:30 at CDRC follow up clinic with the speicalists for their nuero evals. So we wait & wait & wait some more and they still aren't calling us back for Mady's swallow study. I should mention that Mady had to be brought hungry, and she hadn't eaten since 9:45 am. Finally around 2:30 someone comes to tell us it'd be about 15-20 more minutes because of an emergency. I told them we were supposed be at another appt. at 2:30 which we were now late for. The receptionist told me that the other clinic was aware we were being held up, and it was fine. At this point Mady's getting pretty hungry, and I'm getting pretty pissed off. I was able to get Mady to sleep, so she wouldn't care about being hungry anymore. Finally around 3:15 one of the Physical Therapists from the CDRC clinic comes out and asks who we were. She asked how long we'd been out in the lobby waitng, and I told her since 1:30. They had NO IDEA we were out there, and radiology didn't communicate with them at all! So the whole time we're just sitting out there, we could've been having the girls evals done, and they could've just called Mady out when they were ready for her. UGHHHH!!! This place is ALWAYS like this!

Finally at 3:45 they get Madelyn in for her swallow study. She'd gone 6 hours without eating. The study showed that she is still aspirating, and so she needs to have her bottles thickened up a LOT more. It now has to be about the consistancy of between honey, and pudding, and even then she still aspirates occasionally. They also want us to start serving her bottles refrigerator cold, because she has sensory issues due to her paralyzed vocal cord. I guess it helps her feel the liquid, giving her better control when swallowing. Our poor girl! She doesn't seem to mind though, so it's all good for now. We escaped her having to have a G- tube (feeding tube) put in so we're very happy about that. They want her to start being seen by the feeding clinic there to follow her more closely, and to meet with a nutritionist to help her gain weight. Another swallow study in 6 weeks was recommended too.

So while Madelyn had her swallow study, Ian took Katelyn to get started on her nuero evaluation. It was hard to have the girls seperated, and not being able to hear what was going on with Katleyn or answer questions. Ian did fabulously though, and by the time I got in there they were all done with Katy. There were a few therapist and one Nuerological specialists to do the evals. Katelyn scored very well, and they all put her in the 5-7 month range on the Baley scale for all of her developments so far! That is wonderful news for Miss Katy. She was very sweet the whole time, and did everything they watned her to do. During the study, they have all these asessments to make. They basically observe the babies playing, and mark what they can/can't do. They want to see things that babies their adjusted age would be doing, so anywhere from 5-6 months would be on target for them. They want to see Katleyn back when she's 12 months adjusted, so around 15 months actual age, sooner if a problem arises.

Then it was Mady's turn. She had the same team of therapists, and they all agreed that her skills seem very scattered at this point. They scored her in the 2-4 month range on all of her developments this far. She scored lowest on visual responsiveness/reactiveness & speech, being around 2 months. Her motor skills are scattered between 2 & 4 months. They also noticed that Madelyn's left side is weaker, especially her leg, she tends to prefer doing everything with her right side. Her muscle tone seemed good, with minor stiffness in one of her ankles. So all in all Mady is delayed, but hopefully she'll catch up. No one seemed overly concerned at this point, and said it's too early to determine any type of long term issues Mady might have. They want to see her back in 3-4 months, or sooner if I feel there are problems. We will be looking into physical therapies through Early Intervention for her in the mean time, and having her vision tested next month to rule out any problems there.

Both girls also had their hearing tested, and they have excellent hearing! They don't need another test until they're 18 months. So that's really good news.

Our appts. got over and we were on our way back down the hill around 5:30. We of course hit rush hour traffic, which was VERY VERY BAD!!! It was actually the worst we'd seen it besides on Christmas Eve. There was no wrecks or anything, just idiot drivers. It took us an hour and 15 minutes to go 20 miles! So after all that riding of the brakes in our old mini van we lost our front brakes! They got so hot they were smoking. It took us over 3 hrs to get home, and that's with just stopping for food! It was a horrible horrible day! But we're all home safe & sound, and we don't have to go there again for a few months...hopefully!