It’s been a while since the last posting, and there is a lot to catch up on. We’ve been very active with the kids, and there are some health updates.
First, updates on our antics with the kiddos. Later this month, we’re going to drive the family to see Julie’s grandmother in the UP, in upper Michigan. It’s going to be about a 15 hour drive, which we’ll try to knock out at night while the kids are sleeping. So, a couple of weeks ago we decided to drive to Keystone for the weekend as a kind of dry run. We figured that would help us identify any glaring omissions from our packing list, validate the “drive at night” theory, etc. Anyway everything started out just great. We fed the kids dinner on Friday night, loaded them into the minivan and headed out. The kids fell fast asleep, just like we drew it up in the pre-game. We got to Keystone a little after 11 with little problems.
It’s warm in the condo, so we didn’t put the kids in their sleep sacks and instead gave them blankets. Also, we didn’t figure the kids were too mobile yet, since they are just starting to roll over, so we figured they could sleep on blankets on the floor. The didn’t wake up during the transition from the car to the floor, and we all went to bed. The next morning brought he beginning of Vomit-palooza 2008. I’m not sure whether it was the change of scene, the altitude, a poor night’s sleep, or what, but Madison and Noah spent the next two days throwing up just about everything they ate. Even Chloe had a “full reversal” the morning before we left. I’m not sure why I thought of this, but before we fed the kids the first morning, I took a blanket off of the spare bed and put it over the couch and floor. Even so, the carpet pad in the condo must look like something out of CSI. It was pretty ugly. We actually considered driving home late Saturday night it was so painful.
The second night showed us how wrong we were when assuming the kids weren’t mobile. We put down two little blankets, one each for Chloe and Madison, and put Noah to bed in the middle of a Gymini (a flat mat with toys hanging over it). Before we even went to bed, Chloe and Madison had rolled into each other and started a slap fight. I moved Madison to the middle of the larger (now puke stained) blanket, and we all went to sleep (or so I thought). Sometime in the middle of the night, I remember hearing the jingle of toys, and figured Noah was playing with the toys over the Gymini. At about 2am, I awoke to a blood curdling scream. I went out to the living room to find that the noise I had heard was not Noah playing with the toys, but the sound of him scootching around the bars of the Gymini. He had scootched his way out off of the mat and face first into the living room chair. He was not happy. Chloe was still fast asleep, now spread-eagled in the middle of the two blankets originally put out for her and her sister. Madison, meanwhile, was writhing around in the middle of the living room in a death match with her blanket. The blanket thought it could gain the upper hand by leaping on Madison’s head, but I guess it didn’t know she was a biter. Anyway, the wrestling match was pretty intense. By the next morning, Chloe was the only one who had a decent night’s sleep. Pack ’n Plays are now at the top of the packing list. Quite a weekend, and we were all happy to get back home on Sunday.
The next big adventure was Julie’s and Madison’s trip to Seattle. Earlier this month, the two of them flew to Seattle to visit some friends of Julie. In short, Madison did great. She was “awesome” on the plane, as Julie describes it ,and she had a total blast in Seattle. One the way back, she spent the entire flight babbling, or otherwise telling all the passengers all about her big trip. In contrast to the Keystone trip, this was a total success.
Madison has become quite the little babbler, by the way. She’ll get in these modes where she talks, squeals and lets out other funny little noises for what seems like an hour. This can happen any time day or night, and we frequently hear them over the baby monitor in the wee hours of the morning. She is still too young for any words, but yesterday morning I swear I thought her say, “I want some cowboy boots.” She is from Colorado, after all.
On the health front, Chloe has been having trouble with her eyes. They roll down in her head at random times, and, as you’ve seen from the photos, she opens her eye lids really wide. We’ve been referred over for an MRI, which will happen in a week or so. It could just be related to her prematurity, and it’s quite possible she will just grow out of it. Still, we are having an MRI just to make sure nothing else is going on. The cause could be neurological, which really scares us given what we’ve already had to endure with Madison.
Madison has stabilized since her last surgery (her 7th?). She is back to her chipper mood, except when she has trouble burping which really drives her nuts. She still has her down days where she seems a bit off and throws up a lot, but generally she is stable. Given the damage she has sustained to the visual areas of her brain and optic nerve, we are having her vision evaluated tomorrow by the Anchor center, which specializes in caring for children with vision impairments. Madison can clearly see something, we just have no idea what. Also, given the area of her brain that was damaged, it’s also possible that she can see but her brain can’t interpret what she is seeing (i.e. she sees an apple but can’t tell you it’s an apple, even though she knows what an apple is). She has developed some mild tone in her legs, but the rehab folks at the Children’s hospital describe it as mild. We’re doing some exercises with her to address any issues there. Other than her vision and weakness in her head control, she is hitting her developmental milestones. While we still have no sense as to her long term prognosis, it’s nice to know that she is keeping stride for now.
Noah’s big issue remains his reflux. He’s getting better, but he’ll still throw up while eating from time to time. It will come out his mouth and nose, and he’ll spend the next five minutes or so arched in pain and gasping for air. We found that using a bulb syringe to suck fluid out of his nose helps him recover faster, but it’s still pretty tough on him. He is gaining weight, but he is also still the smallest of the three.
Julie and I are still hanging in there, and there are some things that are getting easier. Generally, the kids sleep through the night, although Chloe is having some issues falling asleep. Noah’s reflux makes every mealtime an adventure, but it is trending better. Still, we are always aware of Madison’s condition and we are nervously awaiting the results of Chloe’s MRI. The gravity of the situation weights on us constantly, but we are always hopeful for the best.
I’ll post some new pictures after I find the time to figure out how to get then off of our new camera.