New therapist

We saw the new therapist on Tuesday and I like her so much more than the last one because she actualyl listens to me. Anyway, we got lots of new exercises - helping to transition to a sit and stand (in various ways, depending on which girl I'm working with since they have different strengths and different ways of moving), practicing a side sit to build of core strength, and helping with crawling. What I also like about this new therapist is that she seems more flexible with the exercises. She said she wants to girls to master their next skills in the easiest way possible for them. From there, we work on them mastering the spectrum of movement. So, for example, Evelyn wants to pull up to a sit from her side. Clara is less traditional and wants to get to a sit from a crawl position. We hold weight down on Evelyn's thigh to get her to pull herself up and, for Clara, we get her on all fours and then tug on her hips to get her to scooch back into a sit. The therapist said that once they can do the movement, the other ways of getting there will come more naturally. Our old therapist would have had one way to do an exercise and made us force it.

Take care,
Kris

Brain Ultrasounds

The girls had their ultrasounds last week. No change. Clara's ventricles look the same and Evelyn's fluid looks the same. Certainly we were hoping for things to be improving, but staying the same is better than getting worse. As long as we're still looking at benign anomalies, we're happy.

We start PT with our new therapist tomorrow. I'm happy to get some new exercises as the girls have outgrown their last set.

And, finally, good luck to Jordy today.

Take care,
Kris

9 Month Well Baby

I took the girls to see their doctor today. Clara is 15 lbs 8 oz (5th percentile) and Evelyn in 18 lbs 5 oz (45th percentile). Clara is 20th percentile in height. I don't know Evelyn's percentile becuase they had to remeasure her and they forgot to give me her new percentile. She's a little over an inch taller than Clara though. Clara's head is 80th percentile and Evelyn's is >97th.

We're going to repeat the brain ultrasounds on both girls just to follow-up on the fluid and enlarged ventricles. Doc's not too worried about anything...he sounded more like he wanted to do it to give us some peace of mind. Both their fontanels were open and soft like they should be. Doc's also working on getting their Synagis lined up for RSV season. Alex came with me so we all got our first of two flu shots.

Clara is working on trying to crawl. She kind of knee hops a little. Evelyn got up on all fours a couple days ago, so we think she's not too far behind. Their PT had to take a medical leave of absence so we've been without therapy for 3 weeks. It's been a nice break, but I'm anxious to get them back into the swing of things. Their doctor was a little concerned about Evelyn's neck tilt...surprise surprise. So, it's be nice to get back into therapy and get some new exercises. The current ones don't seem to be making much of a difference.

We started letting them try to grasp at Cheerios. They're pretty bad at it, but it keeps them occupied and makes dinner time more peaceful.

I had a follow-up with my doctor about my thyroid. I have to go in for an ultrasound so he can get a good view of it. He's hopeful that it was a post-partum onset and, as such, may eventually start to regulate itself and I'd be able to go off the meds. Let's hope!

No other news to report except watching out for Ike and anxiously awaiting reports from Houston-residing Papa and Maggie. I'm afraid my old home may end up quite soggy and certainly the beach I know best, Galveston, will be quite affected.

Take Care,

Kris

Crawling?

Clara got up on all fours yesterday and did a little shimmy. It wasn't exactly a crawl, but still pretty exciting! Evelyn seems to be a little limited by her massive head :) Between the size and the persistent tilt, she's lagging a little bit behind Clara. Both girls are sitting up unsupported though - Clara for maybe 10 minutes; Evelyn has to be really convinced to do it, but she will eventually for 2-3 minutes.

That all - good week!

Take care,
Kris

Sitting and another rant

The girls are both working on sitting up unsupported. Clara's more of a rock star - she can sit for maybe 30 seconds before falling over. Evelyn clocks in closer to 10 seconds. It's exciting for us to see them progress, but still a little sad because it's happening on a delayed schedule. I had to take Clara to the doctor last week for a bunch of small things that would have never triggered worry with a healthy baby, but with her sent me on a "just in case" visit to the doctor. Anyway, the nurse asked me to sit her on the scale for her weigh-in (14 lbs 13 oz) and when I said she couldn't sit up yet, the nurse gave me a funny look. Or what I'll call the, "Well, she's 8 months old - why can't she sit up yet??" look. It's difficult to think that your baby has come so far only to see that other people still only see deficits.

While we were there I had the doctor go ahead and feel Evelyn's head to make sure it's not bulging anymore. He said it felt fine. They'll go in for their next well baby visit in a couple weeks for a more thorough appointment. I was glad to get the head feel though - every time Evelyn cries or spits up, I'm convinced the fluid on her brain is building up and causing pressure.

On to other news...I took all three kids to the aquarium which was a terrible idea. Alex is hit or miss there and, even though he had been talking about it for days, when he got there he was a disaster. I went into survival mode and was just trying to get through as quickly as possible. That's when I heard some women talking about the twins. I tried to put my head down and forge ahead (totally not in the mood to have people gawk at them). That's when she grabbed my arm, pulled me back and said, "Excuse me Miss, my friend didn't get a good look at your babies." Really?? Can you believe that?? It's just like having one baby, only there are two. Get over it!! I am sick of everyone feeling like they have a right to my babies. (Another example - on the last day of my road trip - not in a good mood by day 10 - I was trying to get everyone fed at a Qdoba and some lady grabbed a bottle and started feeding Evelyn. Honest to God, who do these people think they are??). Back to the aquarium...as I'm trying to get away from arm grabbing lady, I spot a couple with a set of twins. I asked the dad when people start to leave you alone in public and he shook his head and said, "Never. It never goes away." He also told me that people have actually taken photographs of his twins. Again, who the Hell are these people? Why can't they leave us alone? These babies are not part of the exhibit.

All grumping aside, the girls are doing well. The tooth cutting extravaganza seems to have subsided and they are back to their normal, happy selves. They love anyone talking or singing to them. Evelyn just started ba-ba-ba-ing a few days ago which is really cute. I think I've gotten their motor progress back to where it was before the vacation. Now, we just keep moving forward, keep progressing.

Take care,
Kris

See you later, Apria

Apria, our medical supplier, came today to pick up all the oxygen tanks and the pulse oximeter (finally!). Our house is free!! And, more importantly, we are done dealing with those jokers. We've been pretty thankful people - we sent thank you baskets to perinatal and the NICU. I wrote a thank you letter to our insurance company. We've felt really blessed and fortunate to have such good care. Now....that being said....the biggest exception has been our oxygen supplier who has managed to set a new bar for craptastic customer service. Even today, they didn't do what they said they were going to do. Way to go out with a bang, guys. Time after time these people have made an already difficult life situation even more difficult. They should be ashamed of themselves for how much worse they make things for families who are already in crisis. They've come hours late or not come at all. They've brought the wrong equipment. They've brought equipment they themselves don't know how to use. They've not send test results to our doctors. They've not returned phone calls. In gentle terms....we hate them. Or as our doctor once said, "You are the first person to complain about Apria.....today."

Unfortunately, their competitors are just as bad.

But he does not own Scooby Doo underwear

Day 2 of road trip...

We got dressed and ready to start our second day. Alex was walking around the hotel room getting his shirt on when I noticed he was wearing Scooby Doo underwear. May not sound strange but…he does not own Scooby Doo underwear.

We drove, drove, drove. Drove through Park City. Drove through Provo where I had to pull over so Alex could pee off the side of the road (lovely). Eventually we reached our first stop – Salt Lake City. I live in Denver and I’m very aware of a kind of mythical view of Denver by outsiders. Like a magical mountain town full of log cabins or something. So, I don’t know why I imagined SLC to be some mythical mountain town, but it’s a total and complete dump. My mother used to live there a long time ago and absolutely hated it. Seriously…ask her some day. She practically seizes at the thought of the place. Now, I don’t know the exact reasons why she hates it so much, but I do know why I hated it. It’s a nasty, brown, smog-fest. It looks dirty. The streets are numerical instead of named (I know, I know….sounds stupid, but as a tourist it was very confusing). And the area I visited was full of the most ridiculous collection of women I’ve ever seen. Women in their 40’s and 50’s absolutely refusing to dress age appropriately. I saw a women with her two teenage daughters and she was dressed exactly like them. At some point, you need to put some damn clothes on, stop label chasing so much, and tone down on the Bedazzler. No one thinks you look 22. Everyone thinks you look sad.

Anyway, we stopped at a children’s museum that was nearly impossible to navigate with all three kids. Children’s museums are best when all the children you have with you can actually explore on their own. I was limited because a huge section was “stroller free” leaving me with an area that was too old for Alex and one small little room. I took him to that small little room and let him build things, play with cupcake cups, and touch things. It was about as much fun as it sounds.

After the basically unsuccessful trip to the children’s museum, we stopped by a food court and I had a moment full of pride. I was rocking Clara in the stroller, feeding Evelyn a bottle in my lap, talking to Alex, and eating a slice of pizza. I wished someone had a camera or something.

We got back on the road and drove through the Salt Flats. Okay, so I had no idea that something called a Salt Flat even existed. Apparently you race on them and they are quite famous. When I told my brother in law what a pleasant surprise they were he looked at me and said, “World’s Fastest Indian??” When my face showed no glimmer of recognition he shook his head at me and gave me the saddest look of pity. I’ve seen that face before…on me…when I can’t believe Greg has never seen The Brady Bunch or Better Off Dead. Anyway, I was incredibly surprised and awed by hugeness of them. There is no way to adequately describe them or photograph the breadth of them. It’s sort of like an ocean of salt – just huge, vast, blindingly white everywhere you look. And at one point along the Flats there is a big, art tree thing. It looked like large, colored baseballs.

We stopped in Elko, Nevada to go the Northeastern Nevada Museum. Okay, here’s the thing – there’s a place in Houston called The Orange Show where this guy transformed his home into a work of art celebrating, among other things, his love of the fruit. It’s amazing and I appreciate anyone with that kind of devotion to detail. However, the guy clearly suffered from some sort of mental illness. Local artists and others have kept the Orange Show running and you can go see it for yourself. I believe most people going through there, as well as the employees, are kind of in on the joke. “Joke” doesn’t really sound right, but you know what I mean. Now the Northeastern Nevada Museum gave me a similar vibe – only I don’t think anyone else is in on the joke. We walked in and to the right there’s a large room filled with taxidermy. Filled. Hundreds of them. Lions, deer, bears, monkeys…you name it. Some are kind of grouped together- there’s an Africa part, a rock climbing quadruped part, etc. The two things that made me laugh out loud were the dead animals posed to look like they were attacking other dead animals (seemed undignified to me) and the elephant head that was mounted on a wall with the rest of the elephant painted as a mural. The place had to be the work of a mildly crazy person. Alex, by the way, loved the big, creepy room.

We walked to the other side of the museum and they had these sweet little dioramas of frontier life. I imagined the meetings in which people planned these out and designed them. As I wandered past the dioramas I encountered something else totally insane. Case after case after case of a gun collection. I wondered if each gun was used to kill one of the animals in the adjoining room. The whole place gave me a mixture of delight and uneasiness. And I’d recommend it to anyone travelling through Elko, Nevada.

We stopped at a nearby park to let Alex run around and give the girls a chance to stretch out on a blanket. Naturally, we met a set of twins there because, God forbid, we go anywhere and don’t meet a twin. After everyone was appropriately fed (including me, thank you very much) we were off to Winnemucca. The drive was largely uneventful except for my little joy at driving through a place called Pumpernickel Valley. I just liked the idea of that place.

Before visiting Winnemucca I only knew about it from reading the Tales of the City books. I knew it as a place with legalized brothels. After visiting Winnemucca (twice, actually, we stopped there on the way home), I basically still only know it as a place with legalized brothels. Not the most exciting place. But our motel with decent (a much cleaner version of the Swedish Inn in Kingsburg, CA). The woman checking me was, you guessed it, one half of a twin pair. Seriously…can’t avoid them. We settled in and got to sleep at a reasonable hour thanks to a time change working on our favor.

The next glorious morning, all the kids slept in until 8:00.