Sunday, March 31, 2013

Happy Easter!

I hope you are having a wonderful day with your families.

It has been a wonderful week. Liam was home for spring break and the weather was beautiful. The kids in the neighborhood have all been keeping the boys busy and I even got out into the back yard to do a little cleanup at one point.




Just a couple of appointments for K and they were encouraging. She's continuing to progress little by little. Look at her working on her head control!

I felt effective at the office.

I was happy with the interview that posted on Tuesday.

I cooked. Twice!

I vacuumed my own house (well, half of it), for the first time since K was born.

On Friday, Jeff took the day off and we had our first real outing as a whole family. We went to the zoo, lunch and the park. I was over the moon to have us all together. Keira did pretty well, too. It was a novelty just to have her outdoors. Saturday she was tuckered out, but all in all, I don't think the big outing set her back any.

My mom brought an Easter craft over for the boys yesterday. I don't know how much they were into it, but I thought it was fun!







And I can't forget Ringo...with much hesitation I told Jeff he could get a new dog. Ringo is from the Humane Society's IDAPI program in which "unadoptable" dogs are trained by incarcerated inmates for 3 months. Ringo couldn't be better. He sits, stays, prays, heals, fetches, etc. etc etc. and is extremely gentle and tolerant of the kids.







This morning Keira was dedicated at church. She wore the beautiful gown my grandmother hand crocheted that I was dedicated in in 1979! It was an extra special dedication, between the gown and all the grandparents there and being surrounded by our church family, many of whom have been supporting us in various ways over the past (nearly 7!) months.


The rest of the day will be spent with family and I think the boys will enjoy the skateboards the Big Bunny left here.




Busy week ahead. Four appointments for Keira. OT, 2 PTs and an initial appointment with a vision specialist of some sort. Ronin is starting soccer. Liam and Jeff are starting fiddle lessons. Matt is coming to visit from Seattle. I'm starting out encouraged. I have not been accustomed to restful weekends lately, but this one was refreshing and rejuvenating.



Tuesday, March 26, 2013

Parenting Reimagined

A former classmate of ours has embarked on a wonderful project. Each week she interviews a remarkable parent and turns it into a beautiful podcast that is available on her website. A few weeks ago, I had the privilege of having Sherry interview me. Our interview was posted this evening:

http://www.parentingreimagined.org

Thursday, March 21, 2013

RicRac

When I think of my emotional life lately, I think of ric-rac. You know, the scallop-edged ribbon that crafty people use? It's just that within a week, or even a day, I consistently feel very good, then very bad, then very good, then very bad...

Sunday. 7:55 pm.  Keira rolled over. Un. Be. Lievable. Wow. I DID NOT expect that so soon. Happy as can be and so proud.

Monday. Talking desperately to my husband about being overwhelmed and needing help. All the time. It's been an ongoing theme in my psyche as evidenced by my frequent dreams in which I am disappointing my friends or vice versa. Keira is making me rethink my social life and in deeper ways than being open with my story.

Tuesday. Day one of Keira's reflux medicine. What in the world? First day in weeks that she's laid on the mat, alone, playing for 10 minutes at a time! She's looking around, engaging, and showing us all she's got. Jeff says,  "I guess babies don't like to feel like they have to throw up all the time."

Wednesday. Saw the physical therapist for some "woo woo" magical head massage therapy. Pulled my dad out of a meeting to help me trek all the way to Eagle. Is it worth it?

Today. NICU follow up clinic. K cried all the way there and all the way back. It was so fun to see our favorite doctors and a couple of our favorite nurses. They confirmed "global developmental delay" and placed her at a 2-3 month level. They prepped us for some possible symptoms to come, as are frequent in babies with neurological problems: seizures, muscle stiffness (requiring, get this: Botox), and sleeplessness. I think I think it was fun to go to this appointment. I also think I think that though the vocabulary we use in these settings has gotten to be familiar, it probably still wears on me emotionally more than I readily admit.

Today. Took Keira, finally, to get her bizillion dollar Synergist injection.

Today. Starting to plan Ronin's 5th birthday party. One of my favorite mom things to do. Starting to wonder if this was a bad idea, though.

Still today. I sweet friend gave me an article to read called, "God, Why Don't You Heal?" I feel that I should comment...

Peoples' reactions when they hear about our situation with Keira run the full spectrum from, "Why did this have to happen to you? It's so unfair" and "I am praying for Keira's full healing" to "What a blessing this is." "She is a special gift."

As you may have heard me say before, I haven't prayed for healing. In part, this is because I believe God may not choose to "heal" her (As in making her have an average IQ, making her walk and speak normally, making sure she sees and hears, and making her have social relationships that most would consider to be adaptive). He may not grant her all of those things and I need to be ready for that. I can't expect God to "heal" her and therefore not completely love and accept who she is right now.

Beyond that, I don't think that Keira is necessarily broken. I think that there is a purpose for her being created just how she is and I have already seen some amazing things in my life and in my community because she has been a part of it. If we embrace the opportunity, people like Keira help us to see beyond ourselves. They show us that what is "normal" so often is a socially constructed concept in the midst of our rich, entitled, American ways of thinking. No offense. People like Keira show us how little control we really have and that there is beauty in that. Perhaps asking for healing, rather than being a show of faith, is actually an affront to His creation.

I've never really felt (so far, at least) like God "did this to me" or even that he "chose me to be her mother" or that Keira is a gift  that only I am so lucky to receive. I never subscribed to the health and wealth gospel. The Prayer of Jaybez makes me want to vomit. No offense. I never believed that God promised our lives would be easy. Or that believing in Him gave us any sort of insurance against....well, anything. I guess that's why I realized very early what it took the author of the article a couple of years to figure out: There's nothing wrong with my daughter, really. But there is something wrong with me. I am broken. I needed to come to grips with my own limitations as well as my own strength.  Though I don't expect Keira to be healed, I think that her life itself brings healing...by allowing her family and others to participate in her life and in our family and seeing that there is joy in spite of the difficulty.

These beliefs do not in any way mean that life is easy or that I don't worry about Keira or that I don't feel sorry for myself. It doesn't mean that I'm not going to pursue every therapy I can get my hands on to make sure that she can be the best she can be. But in the end, I do trust that it's all going to be okay. And yes, reconciling all of that can seem contradictory and confusing. It's beyond my theological expertise to be able to articulate it any better than that. But, you know, you could always get Jeff talking about disability theology if you really wanted to duke it out...

Wednesday, March 13, 2013

Farewell, Valgancyclovir

On Saturday, Keira was 6 months old. It was also the day that we stopped giving Keira the antiviral medication that helps to ward off the CMV. It's also the last time I fell apart. 

My inner monologue went something like: I'm not spending enough time with Keira. Or Ronin. Or Liam. Or Jeff. My work at the office has been half-baked. Ronin's behavior is driving me nuts. Liam has been sick enough to need lab tests two times and since when is that not alarming enough to be the highlight of my week? It's been 6 months and I still can't clean my own house. Heck, it's been 6 months and I haven't spent more than a couple of hours home alone with the kids without help. Jeff is uber stressed and busy at work but I barely know what's going on there. My memory is shot. I would love to help Grandma throw a baby shower, but I have no resources to spare. I don't know how many more times I can do baby crunches and back extensions...it's not getting any better. I probably shouldn't have had a play date with another 6-month-old (Sorry, Anneke). Such a show-off, looking all around the room, rolling over, etc. I can't believe I still have this baby weight and every morning have to decide which pair of too-tight jeans to wear. I feel so different than other moms and like my decision to be very public is backfiring. I don't know how to relate. All I want to talk about is Keira but I don't want to sound self-centered. I'm so self-centered. I want so badly to be part of a community but I'm understanding why some people become isolated and shut-in. I so looked forward to going to church on Wednesday, but it was too much for K. She cried the whole time. Then on Friday, she stayed with Grandma and Papa (a less familiar environment), and she didn't eat! We can't do anything as a whole family. I crave friends but I have nothing to offer. My backup supply of milk is gone and I have to give her formula when I go to work. And we just finished giving her the Valgancyclovir which was one thing that made me feel like we were doing something good for her.

Thank goodness my folks know me as well as they do and they stepped in.  Not sure what keyed them in to the fact that I was struggling. It might have had something to do with the fact that I pulled Ronin's arm too hard when he fell into a heap on the floor over a snack that he wasn't getting.  So Jeff and I went to dinner. I felt much better after that. Those thoughts, I'm well aware, are just one side of the coin and I can't stay there very long or I'll cave in. But to come out of it, I feel like someone (Jeff) has to climb in there with me and walk me out. I do feel much better this week.

Monday was Keira's 6 month doctor's appointment. 13 1/2 pounds! Her head circumference is on the chart, too! Okay, so it's the 0.1 percentile, but that's better than the vague "Below 2nd percentile" which is the categorization below it. The doctor noted that we probably won't give K solids until she's about a year because she's currently functioning about like a 2-month-old...

Like a "2-month-old." Huh. That was strangely comforting to hear. As imprecise and meaningless as I know that estimate is, it effectively made me feel a little more grounded. This is where we are. Period. She is delayed. Period. This isn't surprising, no, but on some level, we've been spending all of this time scrambling around....all the doctors and all the interventions...for what? Trying to avoid or prevent or minimize or optimize or what? She is who she is. She will be who she will be. 

Not to say that all of the therapies are useless. At least sometimes they seem to do wonders. At the very least, we're are learning how to help her to be comfortable in her world. However, there may be a time when enough is enough. We continue to have 3, 4, or 5 appointments a week. Many of you have asked what therapy looks like for an infant. Here's my list, ideally to be completed several times every day: 

Oral Motor
1. Hyoid stretch
2. Jaw Massage
3. Tongue massage

Sensory
1. Deep squeezes
2. Massage
3. Joint compressions
4. Weighted blanket
5. Music therapy

Visual
1. Practice tracking, one color at a time, across field of vision
2. Bolster under right side to encourage bilateral processing

Motor
1. Range of motion with arms and legs
2. Extension exercises (tummy time, etc)
3. Flexion exercises (crunches, basket, C-stretch etc)
4. Finger compressions
5. Thumb massage
6. Hand splints
7. Assisted rolling
8. Crawling practice
9. Supported sitting
10. Side-lying stretches 

I pause here before posting this to the worldwide web. Should I really put all this out there? I don't want family or friends to feel sorry for me or to feel guilty for anything. Neither do I want to come across as self indulgent and sorry for myself. I think back to my original intent for this blog. I hoped to create an outlet for myself and to be vulnerable and self-effacing enough that others might feel some sort of inspiration or encouragement somewhere along the way. I suppose to do that, I have to continue to be vulnerable. So, here it is folks. Bless you. 


Monday, March 4, 2013

10,000 and Counting

Thanks to you all, I have just shy of 11,000 page views of my blog since I started it in November! Even if this is mostly my mom hitting the "refresh" button, as my brother has teased me, this is a lot of hits! I've said before and I will say again, it means so much to me each and every time someone tells me they've been reading.

Keira is home and life is back to normal...or whatever. The first couple of days were rough. Last Wednesday, the first day she went with no detox drugs at all, she was beyond jumpy. I couldn't lay her down on the changing table or go over a speed bump without all four of her limbs flailing and screaming with a panicked look in her eyes. "Why do you keep throwing me from a high place?" they seemed to say. Since then, she's become more herself every day.

We're in the process of ramping up K's therapies. Mostly because after talking to several therapists in the hospital, we realized that we could. This week she was introduced to a flexion basket (see photo). This may look like a laundry basket to you, but really it is a device designed to strengthen Keira's core muscles and introduce her to her hands and feet (No, really!). All and all, we are encouraged. K's smile is definitely social. She's working on moving her hands with some volition. SO fun. And she's taken her official place in the family, being the last of our babies to laugh and respond to Daddy's "boom boom ch" drumming and dancing antics.

About the March of Dimes walk....

We really, really want you to come. Since my original post about it, I've realized that registering is a pain. I'm so sorry. In case you haven't checked it out yet, registering as a walker (as opposed to a donator), you have to put in a fundraising goal, address, phone number, login, etc. Also, if you are bringing anyone else in your family you have to create a whole different profile for them. If you are willing, please do go ahead and fill it out. It's the only way, supposedly, that the March of Dimes keeps track of who walks. You have to put at least $5 in the goal amount, but you are not obligated to a penny.

If you are too annoyed to complete this process, I don't blame you. I hope you will, but at the very least, please let me know personally that you are coming, so that I know to expect you. Also, I need to know your shirt size (they ask you that online, too, but it doesn't count) because we are going to have a very cool team shirt. I'll probably need you to reimburse me for the shirts, but it will cost less than ten dollars.



Again, go to marchforbabies.org and search my name or Keira Elise.
This is laughter!