Monday, January 28, 2013

It's All About Me

It's mentally exhausting to go back and forth between

A) Talking and thinking about Keira's deficits, differences, and worst case scenarios and

B) Recognizing and celebrating all of Keira's progress, uniqueness, and accomplishments that so far have defied the odds, and hoping for the best possible outcomes.

The former I use with doctors, lawyers, social security, or anyone with whom I must impose the gravity of K's condition. The latter I use as her mom. It helps me stay encouraged and to be encouraging. It helps me remember she's my daughter, my baby, and NOT my client. It's not too hard, lately, to be excited about how well she's doing, unless I'm face to face with other babies of the same age.

Both A and B are true, but require a bit of mental gymnastics to shift from one to the other. I think both are necessary as well. However, I worry that if I'm too good at B, it will effectively downplay A and make it impossible for her to continue to get services as she grows. I don't want to end up in that cavernous gap in which one is too high functioning for services but too low functioning to succeed in the mainstream. I'm getting ahead of myself...

Again, this is so much more my problem than hers. I was recently reacquainted with a great Winnecott quote: "There is no such thing as a baby. There is always a baby and someone." I am Keira's "someone"  and I don't want my narrative of her to read, "Disability." So, I want to be sure you know that Keira has the wittiest smile. She works with all her might to align her gaze and when she does it in your direction...watch out. You might need a hanky! Keira has deceivingly long eyelashes. When you think there's something stuck in them it's really the blond tips. Her delicate hands have grown pudgy from the inside out. They kind of look like those clowns' balloons when they are half filled to make an animal with a tail. K has the softest, most malleable ears I've ever seen. She currently has normal hearing, can push her torso and head up off the ground from her belly, and bats at her toys. She latches on like a python when it's time to nurse. She loves showers with Mommy.

Saturday, January 26, 2013

Belly Buttons

Each of my babies, when the umbilical stump detached, was left with a unique imprint on the belly button. Liam's looks like a phillips head screwdriver. Ronin's is a cinnamon roll. Keira has a star.

Speaking of (rock) stars...

Q: Do infants (because they don't really have much else to do) typically respond very quickly to therapy? Or is Keira just awesome?

We started moving our fingers around in her mouth, in a fashion called "oral motor therapy" and the next day she was eating better. We started rubbing the muscles between her shoulder blades, working on "extension," and the next day she was holding up her head, looking much less like a hunched old woman. We put her in a white box and started waving toys in front of her face (this was called "vision therapy") and the next day she was legitimately interested in the toys hanging from her mobile.

If the answer to the above question us yes, then I'm in the wrong profession. If it's just Keira, then awesome! Well, either way awesome, actually.

Friday, January 11, 2013

Top 10 Things That Have Changed in Me Since Keira's Debut

1. I don't park in unlit areas. 
I think I had a wee bit of PTSD following Keira's startling birth and all. I remember being pretty nervous on the freeway for the next week or so, pretty sure that if my baby had been born with such an unlikely illness then it was also quite likely that Jeff or I would die in a fiery car accident. Thankfully, such worries have dissipated, but one thing remains: I always park in the lit parking lot rather than the closer, but much darker, spot on the street.

2.  I let the boys dress themselves. 
Ne'er before would I allow such ensembles. Ronin in running pants and cowboy boots. Maybe a t-shirt and a tie. Liam off to school in sweatpants. So much for my aspirations of dressing the kids like Gap models. It's not worth the energy.

3.  I delete to-do lists. 
Jeff has always teased me about my never-ending to-do lists. Or my half dozen to-do lists. When Keira was born, I deleted them. It became very clear to me that I wouldn't be forgetting the important stuff. Since then, I've reinstated the to-do list but I realize that when my anxiety grows, so does my list. When I start adding things to my list like "bathe the children," "gas the car," and "pluck my eyebrows," I know it's time to purge again.

4. I care about politics.
Never before did I pay so much attention to day to day political goings on. However, I found myself insensed after the Newtown incident when the talk of the nation so quickly turned to gun control rather than the care of the Newtown community or the state of mental health care in America. The same day, I wanted to cry when the Nampa School District had to eliminate the program that busses kids to after-school programs. A new perspective, I guess.

5. I have more confidence in my faith.
I've been a Christian for most of my life. In the way back of my head I've always wondered, just a little, if I was doing Christianity right. After all, I did vote for Obama. Twice. I now know, without a doubt, that my faith is strong and it carries me. How in Heaven's name would I be standing on two feet right now, let alone juggling Keira and the boys and loving my husband as much as ever, if I weren't drawing true strength from something bigger than myself?

6. I'm better at taking care of myself. 
I don't just think, "Man, am I getting worn out." I say it out loud... then I call my mom to come over so I can take a nap! I'm going to the gym  two or three times a week. I can't imagine getting sick right now, so I'm really, no REALLY, trying to stay well.

7. I accept help. 
No longer am I too embarrassed or proud to let someone do my laundry, buy my milk, pick up prescriptions, or get my kids up from school. Yes, I COULD do it myself, but I could also use the assistance.

8. I see the people with "disabilities"  around me. 

And, boy, there are a lot of them. I look them in the eye and smile. I wonder what they were like when they were babies. I wonder if anyone still loves them. I wonder what kind of services they have access to. I wonder what they are capable of and whether anybody knows it.

9. I'm less shy about confrontation. 

Let's not beat around the bush, folks. I have more important things to do. Sorry if that makes me seem impatient or insensitive or (plug your ears) bitchy. I'll have to deal with that later.

10. I love how Liam and Ronin love.

While they have some idea that their sister is "like the kids Mom and Dad see at work," Keira is just Keira to them. They love her dearly and are quite protective. Liam prays that she will not get sick. Ronin plays make believe games all around her and kisses her hard and often. And as much as he craves my attention and time, he never complains about me having to leave him to feed or soothe "Sissy." Liam and Ronin see Keira for who she is right now and have no urgency to see her change or develop or be any different than that.


Thursday, January 10, 2013

Four Months

Keira at 4 months...11 lbs
Ronin at 4 months...15 lbs


Liam at 4 months...15 lbs



Keira is four months old! It's been a tough week for Mommy so far. Trying to get back into the swing of things after the holidays, including work and doctor appointments. I'm already at the point where I'm starting to wonder how much is too much in terms of therapy appointments. We're not quite there yet, but if I have too many more days like yesterday, we'll have to make some new plans. I joked with Jeff that yesterday there was so much therapy that we didn't have time for therapy. By that I meant that we weren't able to do our routine music therapy, crunches, push ups, joint compressions, and jaw, cheek,and tongue exercises. Also, the traveling about was disruptive to her, so she didn't eat well. 

News at the doctor was good and bad. Bad is that her head circumference was unchanged. Good was that she weighs 11 pounds, which means that even though her appetite has not been great, she's gaining enough weight with the fortified milk. 

Keira has been getting noticeably stronger in terms of holding up her head. She has really been enjoying the music therapy CD that the OT gave us. The goal is to help her self-regulate better. We go into my closet and hang out for half an hour twice a day while we listen to the elevatorish music. I joke that it's our sullen teenager time in the closet, but K seems particularly entertained during these times. 

It's discouraging, I have to admit, that Keira still isn't tracking objects well. Though there are moments when she looks at us, she doesn't respond well to social smiles and most of her "play" time is spent looking waaay over her right shoulder. Maybe it's just her vision. Of course I wonder about Autism. 

Really, we're hanging in there. I'm confident that this is just a rough patch. Jeff and my parents continue to help me bear the burden (is that what this is? that sounds terrible) every day. Many of you have offered support in the past two days which, whether you knew it or not, was perfect timing.

K was particularly talkative in the closet tonight. The cough sound is her laughter. This is particularly for you, Joy Jones!



Saturday, January 5, 2013

Windows of Opportunity

The past few weeks have been rough, I guess, with Keira. She had that morning with Shelly that was amazing, but we haven't seen her so alive like that since. She's continued to be disinterested in food. According to the doctor's orders, we've been bottle feeding her every 3 hours around the clock in order to try to keep her weight up. Bottle feeding (which requires pumping, then bottle feeding) allows us to measure what she's eating and fortify the milk to add calories. Even so, she's only taking in about two thirds of what she'd been eating before. She's been sleeping most of the time. When she's awake, she's typically breathing very fast and looking away. Christmas celebrations numbers 2, 3, 4, and 5 (I know, it's out of control), largely passed with her asleep in the next room.

Assuming this is all sensory related, we've really reigned her in. We've taken her out as little as possible. However, when she's home with sitters she tends to eat even less. We've tried to keep her environment quiet. We tried feeding her under a blanket, feeding her in the dark, etc. etc. There was a period of a couple of days when Keira spend 95% of the time in her room, in the dark. My mom and I agreed that that approach didn't seem quite right either- too much like a prison. So, we bring her out more, but being in the living room with the boys running around gets her disregulated.

My mothering has turned into this impossible dichotomous endeavor. I'm very in tune to Keira, or trying to be, responding to her needs, keeping her calm. On the other side of the nursery door, though, are two very energetic boys who want mommy to play. Ronin even begs. "Please? You can feed Keira while we play spies." It's very hard to feel like I'm doing a good enough job for any of them, although I'm aware that this is the plight of motherhood in general. We've made a point to do some special things with them. We enjoyed Wreck-It Ralph and a Steelheads game last week.

Jeff has been wonderful, as always. He entertains the boys as much as he can, gets up with K in the night, and has even been cooking lately. All this in addtion to working full time, of course. Jeff pointed out to me the other day that I seem to have a new conviction or concern or intervention to try with Keira every 6 to 8 hours. Sadly, this is about right. It seems that I'm desperately trying to grasp the pattern here, to be able to predict and mediate the future, and my sense of having a hold on it changes with each passing feeding and alert period. No wonder I'm feeling weary.

***

So when I mentioned that Keira had not seemed so alive and alert since that morning with Shelly, what I meant was until yesterday! Yesterday and today have been beautiful. Keira has been awake, alert, and oriented to the people around her. Yesterday she laughed and cooed at Grama Joy and later with Aunt Steph.

We had a much-anticipated OT appointment and though K wasn't very thrilled with the therapist, I gained several new techniques and interventions. The OT described our sensory processing as a bucket. It's hard to know how big the bucket is or how long it takes to fill it up. Every sensory experience we have (what we see, hear, feel, taste, etc.) takes a little from the bucket. When the bucket is empty, it becomes very difficult to function. She described the feeling as being  "ungrounded" or "swimming." It puts our body into our panicy fight or flight mode and when we're there, we can't grow or develop or learn anything because we're all about survival. The bucket can be refilled, but it may take time (even weeks).

One of the new techniques is music therapy. The OT gave us a special CD to listen to with her twice day to help sooth and regulate her. So this morning, K and I settled down on the floor of my walk-in closet to do her first session. It was amazing how she brightened up. Man, when she is regulated, it's like she's come out of a coma. It's like two different babies: She goes from being a very cute, but distant creature to a very engaging and animated baby. Needless to say, we thoroughly enjoyed this time together.

Would you believe that the day went on to include a vorascious appetite, fewer naps, and two new sounds ("g" and "rrr")? Too good to be true, right? Well, maybe. She did throw up four feedings in a row today. But, this is all so hopeful nevertheless. It's possible that all of the sights, sounds, and activity of the holiday season depleted her and required a couple of weeks for her to come back from.

Next week: Weight check and immunizations, OT, Physical Therapy (PT), and a meeting with IESDB (Idaho Education and School for the Deaf and Blind).....Also, I'm going back to work. Ugh. I want to cry when I think about it. I feel like my life is just about balanced....before I think about work.

Thank you for reading.



Friday, January 4, 2013

Keira's Playlist

- Guardian by Alanis Morissette
- Sweet Child O' Mine by Guns n Roses
- For Baby (For Bobbie) by Mary Travers
- Castle on a Cloud from Les Miserables
- When You Believe from The Prince of Egypt
- A Mother's Prayer by Celine Dion
- Doing It All For My Baby by Huey Lewis and the News
- Goodnight My Angel by Billy Joel