Everything is hard

It took a week for me to publish that last post. Namely because I was in the process of writing a very upbeat post about how well things seemed to be going when I began feeling much more frustrated and less optimistic all of a sudden. It happens. I wouldn't say that my life is necessarily a roller coaster, but it definately has unexpected ups and downs. So I finally finished up that last post, but now let me get you up to speed...

Keira really hasn't recovered completely from when Jeff and I were out of town. Her reflux is worse again. Or maybe she's just disregulated. Maybe she's out of sorts because she spends a lot less in time with me lately. Maybe she's having involuntary and painful muscle spasms. It's really hard to know. I felt helpless on my last phone call with the GI doctor. He asked me some simple questions like, "is it worse than it was initally after surgery?" And, at a loss, I confessed that I don't even know anymore. All of the information and patterns and cues seem to be muddled and I just don't know. He prescribed another medication, which seems minimally effective. The one very, very good thing is that K is almost always happy with Jeff and any discomfort she has is generally short-lived. I think it's due to the fact that 1) she just freaking loves him and 2) he's really rough with her, which, strangely, seems to help her organize herself.

So, digestion seems to be an issue. K often screams after being being fed. We decided to reintroduce the Baby Spanx (Theratogs) to see if it would help her digestion. They really do help with her movement, but it's a pain in the butt to put them on and take them off and pull them aside to burp her/feed her/change her diaper.

Keira has outgrown the cradle in her nursery. I have been working on getting her a "safety bed" or hospital bed so that she can have one bed for the rest of her life that will meet her needs. I've talked to 2 different therapists, 3 medical suppliers, 2 nurse reviewers, and a medical director, to try to pin down what information I need to have in order to be able to get a bed for Keira through Medicaid. The process has seriously been like a never-ending scavenger hunt that I don't want to play. I get completely conflicting information from one professional to the next. I had the "expert" tell me exactly what I needed to try for Keira before getting a hospital bed, only to find that the things she recommended DO NOT EXIST!! Grrr. Finally, Jeff and I decided to go to Babies R Us and buy Keira a crib. Quite a bit longer, this will last her for a couple of years, most likely, and we can continue to work on the hospital bed saga without the time pressure.

Keira's stander is probably her favorite therapeutic tool at this point. We love it. She's grown several inches since we got it, so we took it to PT with us last week to be adjusted to fit her better. The adjustment took the entire therapy hour and when we got home, we realized it wasn't quite right. It took my mom, Jeff, and myself over the next 2 days to get it right. It was the stander this week that made me think, "Could something related to Keira just be easy for once?"

Finally, Keira's visit with the orthopedist the other day was exactly what I'd feared. Her hips are looking worse and the doctor wants to do surgery on both. Even if K is never to walk, she needs the hips fixed in order to prevent pain, make movement and cleanliness easier, and to allow her to bear weight on her feet. Thankfully, the doctor agrees that we should wait and do surgery AFTER cold and flu season is over, so as not to put her at increased risk of, well, anything...

It's going to be good

I'm not feeling nearly as despondant about "2" as I was with my last post. Right after her birthday, as if to say, "Don't you dare doubt me, Mom!" Keira hit a pretty important milestone. She saw herself in the mirror and laughed! Just to test it out, I put a big, yellow flower in her hair and, to my disbelief, raised her LEFT hand, almost immediately, to to her head to explore the image she saw in the mirror.

It could be a good year after all. Keira is at an age where, for the most part, she is so behind her same aged-peers, that I no longer compare. Rather than being dismayed that she's not walking and talking, I can be excited about the possibilities that are within her reach. Maybe this year she will make the "mmm" sound, hold her head up on her own, grasp and hold a toy, take a meal of solids by mouth, or reach for me when she wants to be picked up.

A few weeks back we had a monumental "first," of sorts. Keira's "button" (port for her feeding tube) got pulled out of her stomach. Turns out it was my fault. I hadn't been diligent about checking periodically to make sure that the balloon, inside her belly with to keep the device in place, was properly inflated with water. I'd let it get too low, so it popped out more easily. Left with a hole straight into her stomach, we stuck a catheter in to hold the hole open and rushed to Boise, where the GI supervised while I inserted a new button. No sweat. We purposely chose a button that we could insert on our own. Some others require a hospital visit for each incident like this. Yah, it seems a little weird that this sort of thing is no big deal to us. I guess that's a statement to how much we've seen Keira go through. In the ende, the end, the button is a pretty simple little device. Medicine is not altogether different than plumbing and carpentry, I imagine.

While we were at the office that day, we weighed K, who was nearly 22 pounds!! You've never seen cuter chubby legs in a miniskirt.

Jeff and I went out of town to attend a CMV policy conference last weekend. K was in good hands between my mom and aunt Shelly, but when we returned, it became clear that the separation from us was more disruptive to her than we had imagined it would be. For a week or so, she was really disregulated, startled easily, struggled more than usual with reflux, and responded little to her various therapies. A few weeks back, Keira started feeding therapy, and last week that therapist aptly described K as "the most calm tense little girl I've ever seen!"

I've been feeling really well. I can drive again, which is nice, and I've been spending a lot of time helping out at the boys' school since I'm not much use with Keira. I find that that get pretty wiped out if I try to have a "normal" day in terms of how much activity I do. However, I am noticing an awesome difference from my pre-surgery self. I find that I recover so much more quickly than I used to. Even sitting down for a few minutes renews my strength. In my "past life," I felt like my life was continually a sprint to my next opportunity to sleep. It's exciting to think that from here forward I may have substantially more time (because of less napping) and energy for my littles.