Heartsick

Where to begin?

Keira got her tonsils out on the 9th. Surgery went well. The tonsils were enormous, each the size of my fingernail, stuffed in her teeny weenie esophagus. The endoscopy, almost humorously, showed "the healthiest GI track I've seen in 6 months" according to the doc. K stayed the night in the PICU. She slept SO quietly and SO peacefully. No retching. No snoring. Jeff and I were so excited. This could be life changing! Furthermore, Keira set a record by coming home the very next day!

The past week at home has not been a breeze. It's been tricky to keep her comfortable and we're short on hands to hold her. Not short on willing hands so much as hands that K is comfortable with enough that her heart rate decreases, rather than increases, in their care. 

I hate to admit that I had the added stress of wanting K to get better quickly so that we could go on vacation. I want to get out of town as a family so badly. But it was actually kind of a relief when we decided the other day to postpone our trip until after Christmas. Legoland will wait. 

That brings me to yesterday. For days the boys had been wanting me to take them to the library, so I had promised to pick them up from school to take them. When it was time to go, my mom had worked an 8 hour day, so I sent her home and loaded K in the car, even though she was upset, hoping the ride would sooth her. The boys were out of sorts. K continued to be unhappy and the boys' attitudes were bad. Instead of going to the library we went straight home. So I was yelling and everyone else was in tears. 

At home, I worked to make amends. With an unhappy baby on my hip, I talked with the boys about their days. Made  plans for Liam to have some one on one time with Jeff that evening. Just when I was thinking this evening could be redeemed, my "mom alert" sounded. K was working too hard to breathe. I measured her pulse/ox, finding her pulse was too high and her oxygen too low. Seeing that I'd already given her all the meds I could, we needed to go to the ER. 

We've got this part down to a science. Within minutes, Grandma Janie was ready to take the boys and Ronin and Liam had packed an overnight bag. 

Even though Liam would be missing his date with Dad, he kicked it into gear to help out. He turned his frown upside down, so to speak. 

Then Ronin, our tough guy who rarely cries, came up the stairs in tears. I couldn't understand until the third time he said it, "I'm scared of what's going to happen to Keira." As I sat on the floor to hug him, I had a meltdown in my head. "This is my breaking point. I can't do this. It's not fair. I'm going to lose it." Somehow, by the grace of God, before a tear could fall, I was soothing Ronin's worries and moving ahead. 

Jeff and I took K straight to the ER in Boise, to be at the foot of the children's hospital and all of her specialists. Here's a secret: All you have to do to get seen quickly at the ER is utter the words "Respiratory Distress." Magic. It was an excellent ER visit, if there is such thing. The doctor told us almost immediately that he has an 11year old daughter very much like Keira. It was so nice to have a doctor who understands! He was able to meet us where we were right away without us having to bring him up to speed. He even showed us pictures of his little girl and admitted that he was spending way more time in our room than he typically spends with any patient. 

The steroids they gave her in the ER eased her breathing but we decided to admit her lest we have to go back to the ER as soon as the steroids wore off. 

I went home briefly to get some things for the night. My heart was aching. The boys have been 110% amazing from day 1 with everything having to do with their sister. I am well aware of what a blessing that is, and of how hard it can be on a kid to have a sibling like K. This was the FIRST time that I felt like this phased them. We'd had to drop everything and put Keira first. No tacos for dinner. No chance to round out the day after a difficult afternoon. I kept remembering Ro crying and asking me if Keira would die if we stayed at home. But I also remembered Liam saying to his brother, "It's ok to cry," and putting his arm around him as they walked into Grandma's house. Before I left the house, I put an "I love you" note in each of my guys' rooms. I put on my necklace with the 3 charms. One for Liam, one for Ronin, one for Keira. 

I just wanted to be with the boys last night. It's just overwhelming. As I drove back to Boise, I saw many flags at half mast, for the victims in Paris. My night doesn't even compare. So much suffering. I can even comprehend. 

I did something unprecedented last night in that I requested prayer. And thank you to everyone who has been praying. My ideas about prayer are changing. I'm not quite sure how yet, but I suppose I'm trying to exercise it more. Do you ever have that experience where something that you've been hearing or seeing your whole life suddenly becomes much more real to you? Like everything you've heard for so long suddenly rings true in a way it never did before? There should be a word for that (Is there?). Anyway, I'll be giving that more thought. I'm not going to even try to articulate it yet, lest I sound like I'm simply regurgitating a litany I've been fed my whole life. But I will tell you that in my efforts to ease my anxiety and to find peace and rest, I've slowly been reading Sabbath, by Wayne Muller, The Land Between, by Jeff Manion, and Living into Community by Christine Pohl.
Prayer has come to the forefront for me. 

This morning I'm lying in K's hospital bed with her on my chest. She doesn't sound very good, but she's not crying. I guess I'll keep on keeping on. And praying. Much love and appreciation to you all. 

The Dutch Classic and Other News

It’s been a crazy few weeks, although I s'pose that’s not saying much.

The biggest news is that Keira is going to have surgery on Monday. The ENT found that Keira’s tonsils are not only enormous, but have no tone, so they are literally hanging in her throat. So, grossly, she may actually be gagging on them and THIS could be our answer for why she is retching/vomiting so much at night. Jeff and I are both very optimistic that this could lead to some major improvements including fattening her up and getting her to sleep better. We can’t wait. K will also undergo an endoscopy on Monday to take a look at the status of her fundoplication and make sure there aren’t any ulcers or other abnormalities contributing to the situation. I’m also very thankful that the ENT has ordered, of her own accord, for Keira to stay in the hospital, at least overnight, in the PICU. She recognizes that there is some concern that with a sore throat, K is especially at risk for pooling fluids and aspirating. The boys are excited because this affords them at least two nights at Grandma Janie’s. My one wish is that this surgery had been scheduled sooner. Our plan had been to leave on November 20^th to take the kids to Southern California for Thanksgiving. I want so much to get out of town. I’m hoping and praying for a quick recovery for Keira. She doesn’t typically bounce back in a hurry.

Keira, overall, is doing pretty well these days. She's doing amazing things in therapy; working so, so hard. She’s chewing like crazy in feeding therapy, kicking AND holding rings SIMULTANEOUSLY in swimming, crawling with her arms and experimenting with a gait trainer in PT, and participating in group by activating her switch. Really fun stuff. 

We continue to monitor her very closely to try to keep her well regulated. Halloween is a good example. Keira dressed up like the cutest little cheerleader you ever saw. In my mind, it was a little tribute to all of you, “Team Keira,” who are consistently cheering her on. She seemed to enjoy the process of getting dressed up, taking pictures, and rustling her pompom. However, not long after we’d left the house to meet up with some friends, she was retching and throwing up. So, we divided (as we’ve sadly become accustomed to) and Jeff took her home for a quiet night while I tried to keep up with the trick-or-treating Tron and Master Chief.

We met with another new specialist, which was an interesting experience. He’s a physiatrist and my understanding of that is that he’s the one who will be in charge of Botox or Baclofen, or other medications/interventions to help with muscle pain and spasticity associated with CP.  The pediatrician told me she wanted to know what I thought of him because some parents didn’t like him. Interesting…

So let me start by saying that I’ve heard of lots of parents who’ve been told things like, “He’ll never walk,” “She’ll never talk,” “He won’t live to be 5,” etc. etc. Fortunately or not, we’ve never been told anything like that. In spite of her grave symptoms, doctors are very tentative and careful to avoid discussing prognosis or the D-word at any cost. Nobody has ever directly said that Keira won’t do this or that or that her life expectancy is limited. For me, that’s unsettling. 

So anyhow, we meet the physiatrist. I thought he was awesome. The appointment was a brief exam but mostly a conversation about how life with Keira is and could be. He asked about how Jeff and I are holding up. He asked how the boys were doing, because having a sibling like K can be life-altering in good and bad ways. He addressed the fact that Keira is “medically fragile” and that she could come down with the flu and not survive it. Or perhaps we could walk into her nursery to get her up one morning and she wouldn’t be breathing. He talked about how, as she grows, she is likely to have more and more muscle pain and we’ll have to watch out for scoliosis. He asked if we have a wheelchair, ramps, lifts, and other things to help make our life easier. He suggested that we fill out an advanced directive. He suggested that we meet with the palliative care* team the next time we come in to meet with him .

Long story short, I thought this doctor was great. He was gentle and kind and wore mismatched crazy socks, but was also so refreshing in his candor and honesty. I suppose I can see, though, why many parents would not like him. And just because I liked him, doesn’t mean it was easy. After 30 minutes in the room with him, I kind of felt punched in the guts. 

One more story… The Babboe bike is coming TODAY! I’m so excited. We’re taking it directly to the bike shop to have it put together and tuned and I’m hoping for warm enough weather to take Keira on her first ride on Sunday. Last I heard, the bike was almost completely funded through R Life Gives. Thank you, everybody!

So here’s the thing. A while back, the bike company informed me that our bike would actually say “Babboe Dog” on the side of the wooden box. They wanted me to know that, free of charge, they’d be sending me a different decal to cover that up.  So, yesterday I went to the post office to pick up a package. Turns out it was our replacement decals for the bike box.

Oh. My. Goodness. I could not stop laughing. Is this serious? Anticipating a company trademark, in no way did I expect our replacement decals would be the “Dutch Classic.” It is blue and white print that is large enough to wallpaper the box from top to bottom on all sides. As if the bike weren’t a spectacle on its own. The jury is out on whether or not we’re going to go all in and use the decals. It makes me giggle just thinking about it.  I’ll keep you posted.

Much love to you all.  

*My understanding of palliative care is that the goal is to keep a patient comfortable with the assumption that there is not going to be a great amount of recovery 

Gratitude

It's been a rough few weeks. Not long ago, I feared that I was going to be watching my daughter slowly and literally starve to death. We changed her food and reigned in all of the excess stimuli that we could. We sent away our afternoon help, kept her home from soccer and football games and church, and decided to hold off on preschool.

Three weeks later, she is gaining weight and has blossomed back to her old self. An untrained eye might not notice the difference, but Keira is once again quick to laugh, working so, so hard in therapy, and is able to sit on her own for a few minutes at a time with becoming overwhelmed. If you wait and watch, Keira is very communicative. I was once again reminded and so pleasantly surprised by watching her interact with her feeding therapist yesterday. Through her eyes, sounds, smile, and gestures she communicates, "Yes, I'd love too; Let's play ball; I want more; I choose red jello over vanilla pudding; No, I'm not ready; I'm ready now; I don't like that; Mom, did you see that?; I'm so proud;This is fun; That's disgusting; I'd really rather not; Fine, just once more; I'm too tired." In fact, right now, she's crying the how-dare-you-put-me-to-bed cry. It's so exciting to see her personality once again.

Last weekend we ventured out and went to the local pumpkin patch as a family. With the expected crowd and temperatures near 90, I was pretty sure that taking Keira was a bad idea, but I'm so glad we did. Keira, as usual, just loved being together as a whole family. But beyond that, she was able to "play" in the corn box (a giant box, like a sand box, filled with dry corn), which she loved. She took her first ride on a pony (with Jeff supporting her), which she loved. And she ate some nacho cheese, which she wasn't so sure about.

Last week was a mess. One of those weeks where every time you check something off your list, you end up with 3 more things added on. I can't even explain to you what all happened without boring you to tears with the tediousness of it all. Let's just say it was all about making sure that the right information was in all the right places to ensure that Keira has all the right money in the right budgets when she needs them for the appropriate therapies/services/interventions. Don't get me wrong. I am so thankful for Medicaid. I am. But. It's a nightmare.

Keira is still vomiting nightly. I guess that's not normal. After consulting with the pulmonologist, ENT, GI, and plastic surgeon (really!), it looks like we're going to do an endoscopy soon to check things out. We'll look at the status of her fundoplication and see if she has an ulcer or something else causing irritation. We also have an appointment next week to see a physiatrist. I'd never heard of that particular specialist before, but I think that after that, we will have seen them all. (However, I did recently hear of a specialist in pediatric gynecology. You'd never heard of that, either, had you? Hopefully, we won't need that one). Anyhow, the physiatrist will monitor whether Keira needs any medical intervention for her muscle spasms/weakness/tension.

Our business recently celebrated its 5th anniversary. It really is thriving, for which we are very thankful. However, Jeff is currently a managing partner and has a lot of responsibility there beyond his client load. In the last couple of weeks, his duties have multiplied in response to several different situations. Early mornings. Late nights. Long weekends. It hasn't been easy.

The boys are doing awesome. I worry about them and how they respond to inevitability that Keira's needs often take precedence over theirs.  But they are exceptional. Liam, always my observant and sensitive one, is becoming so mature. He has blossomed with his new fiddle instructor. His 4th grade teacher has helped him to feel competent and confident. Flag football is teaching him the value of persistence, effort, and sportsmanship. Liam can pack K's diaper bag for me and never complains when our plans are interrupted by her needs.

Ronin, my guy who will argue about the color of the sky, is becoming more and more thoughtful and sympathetic. He follows instructions readily (Finally!) and is eager to learn. He's taking good care of the little fish tank that was recently installed in his room and cannot get enough when it comes to learning about fish and animals lately. Ronin always makes a point to greet Keira when he gets home from school and his energetic hellos usually get a cackle out of her. I've got to say that I'm also so incredibly thankful that my boys have been choosing such wonderful friends. They are good boys with lovely mothers who have also become my helpers, friends, and confidents.

I'm anxious a lot of the time lately. My heart pounds. I can't sit still. I don't want to answer the phone. My to-do list grows. I can't keep my thoughts straight. I do jigsaw puzzles and try to take deep breaths. I know I'm not alone in this. Anxiety is the plague of our society. It's the result of unattainable expectations that we create and perpetuate by trying to be everything to everyone all the time. I can't do it and neither can you.

The concept of gratitude is something that has been a topic of conversations in several of my circles lately. I'm working on it. Gratitude is about recognizing what you have. Not just when it's excellent. Not when it's above and beyond. But even when things are just good enough. In our consumeristic culture, we feel entitled to having people hold up their end of the deal/bargain/contract. This isn't bad, in itself, but when we expect things to always be tit for tat, it strips away our gratitude for what is given to us on a daily basis. We don't think to be grateful that our car started, the mail was delivered, or our friend meets us for coffee, though we are quite readily displeased if any of those fail. When we are grateful, we are focused on the here and now, leaving less room for the anxiety that comes with regretting the past and fretting the future.

Humans are notoriously bad at being grateful. Our pastor recently reminded us about the Israelites (in Exodus), who were delivered FROM SLAVERY, only to promptly start whining and complaining that the food in the desert (though nutritious and plentiful) wasn't tasty or varied enough for their liking. Ugh. Please don't let me be that guy!

I'm grateful that all 5 of us our safe and warm in our beds each night. I'm grateful for people who are concerned and patient enough to help me get what I need for Keira. I'm grateful for Keira's smile. I'm grateful for my husband's love and loyalty and passion. I'm grateful for teachers who show up to teach elementary school because they love the kids. I'm grateful, and always will be grateful for our vast community of support.

Change of Plans and B is for Babboe

So...yesterday evening, Keira's dietician emailed me to see if there was anything else she could do for us. As I had been saying for months (or so I thought), I told her to let us know if she came across any higher-density foods that would allow us to feed Keira more calories with less total volume. She responded immediately with, "You have tried the 1.5 [calories per ml as opposed to 1 calorie per ml] formulas, right?"

What?!?!

Well, no, actually we hadn't. I don't know why we hadn't spoken of this, at least not recently. After talking to the doctor today, I remembered that a very long time ago, we discussed this option and opted out because of the potential for the heavy formula to sit in her stomach like a slice of cheesecake. But it's worth a try. Because I'll only have to get 400 ml in her each day rather than 600. The doctor said he's going to feel like an ass if this is the solution for us. I love him even more.

Also, yesterday, a friend of mine who is less-known by Keira held her for a bit. After having had a really good day, Keira wouldn't look at my friend and started refluxing almost immediately. I'm thankful for that little window because it reminded me that Keira's increased vomiting could be that she's reacting to the changes in her life lately (ie. the boys are back in school; I'm often gone during the day; we've switched her caregivers around a bit; she's done with her beloved OT...). I mean, I know that she's always been prone to getting overwhelmed and overstimulated, but I hadn't quite been able and/or willing to see her vomiting as another manifestation of this.

So, we're holding off on the GJ. Going to try a new food and help her to regulate her sensory systems again. We'll see what happens. We had Keira weighed today to get a baseline before starting her new food. She's down over a pound since last week. Eek!

***

I'd like to introduce to you R Life Gives. It's a nonprofit organization that our cousin recently started for the purpose of helping families like ours with specific financial needs. He chose Keira to be the first recipient of this giving and I'm so excited! The idea is much like a Go Fund Me account, though R Life Gives will not get a cut of the donations (I've heard that Go Fund Me takes about 30%!?).

I would encourage you, if you would like to help fund this awesome bike for Keira, that you do it directly through R Life Gives' website. http://rlifegives.org

Just a reminder, the bike will be imported from the Netherlands. It costs $2500. The company, My Amsterdam Bike, has actually donated the first $100 because they thought this was such a neat gift for our girl. Once in our possession, we'll be able to take K along on family bike rides by putting her in the box in her Tumble Form chair or her wheelchair. She's going to love it!

If any money is raised in excess of the amount needed for the Babboe bike, it will go toward other medical and adaptive equipment that will make Keira's life more easy and comfortable. Our unofficial wishlist right now includes a medical-grade scale, an iPad with an assortment of adaptive applications, a "button" and transmitter for Keira to be able to operate various household devices (i.e.. fan, iPad, blender) and toys, therapy-grade headphones and an assortment of therapeutic music CD's, and a baby recliner.

Thank you, thank you, thank you, in advance. We so appreciate you all!

Three

To be totally honest, party day was tough. Jeff and I were exhausted. I was not the most enthusiastic or gracious host. But the day was certainly festive.

Special thanks to Steph, for the wonderful decorations. They're still up. Jeff said, "We should leave the banner up all the time, cause that's pretty much what this house is." The banner says, "Welcome to Keira's party."

Thanks so much to my mom, for taking the lovely photos and for preparing all of the pudding. Yes, we had pudding. And it was delicious. Because, you see, K can eat pudding, too!

Thank you to everyone who came to the party and to everyone who sent well wishes. Thanks to all who brought clothes! Keira is going to be the best-dressed 3-year-old this season!

And thank you to everyone who has already contributed to buying Keira's bike. We are so excited for this. More on that soon.

The update for the week is that Keira continues to retch and vomit uncontrollably in the evenings. She's going to have her G tube converted to a G-J tube on Friday. This procedure is pretty minor. It's outpatient and we should be able to do it without sedation. Let's hope it helps. Jeff and I aren't overly optimistic.

When I gave Liam this update earlier today, he said I was turning his sister into a cyborg. Ha! I agreed that unfortunately, he's right, but that I'd prefer more artificial parts over chronic vomiting. He didn't realize this had been a problem. I suppose it's primarily an issue after he goes to bed. Funny he didn't even know...I wonder how those boys experience this. I feel bad. I work pretty hard to keep life normal for them, but today as I dropped them off at school and as I was picking them up, I was preoccupied on the phone with doctors' offices. Sigh...

I'll update again soon.

Worry

I missed my freeway exit.
I dreamed that I had to be at two doctor appointments at once, and could find neither of them.
I called Liam Ronin and vice versa. Repeatedly and often.
I ate the cookies. All of them.
I couldn't remember whether I shampooed my hair.
I asked Steph to go to "Zamzows" (uhh....Zurchers) for party supplies.
I dreamed that my favorite doctor was older and fatter and indifferent. In my dream, I tried to cry out and there was no sound.

So then, being the psychologically savvy woman that I am, I said to myself, "I must be more stressed out than usual." Ha!

You know, when you do this work every day, it's easy, and probably necessary, to lose perspective on the seriousness of it all. Strange things feel uplifting to me....like when 6 of Keira's doctors/clinicians agree to come together for a care conference regarding her treatment on a Friday morning. Like being told that it will probably be a good idea for us to take K out of state to a teaching hospital for a second opinion. It's validating. It's affirmation that, oh yea, what I'm doing is hard. There's a reason I'm eating all the cookies.

So, as always, feeding has been a major issue. Keira doesn't seem to digest her food very quickly and it's hard to keep enough food and water in her so that she stays healthy. For some reason, she's seemed to have an even harder time recently. More vomit than ever and nothing seems to help. Her 3rd (yes, 3!) birthday was Wednesday and was also supposed to be her first day of developmental preschool. However, we kept her home, and will be keeping her home indefinitely, because we didn't want to add any new stressors, no matter how pleasant, that could possibly set her back even more.

Yesterday was really hard. If you asked me (like you do), whether I was daydreaming up a program for Keira's funeral, I would lie and tell you "no." When the doctors are saying they don't know what is wrong or what to do, it's hard not to picture her wasting away. And my reaction to thoughts of her death have changed over time. I mean, I still know, that in the end everything will be okay, but the idea of her dying now seems less like the natural order of things and more like a really unfair set of circumstances. How could this beautiful girl, with an easy laugh, who beams at her brothers, lights up a room, and communicates to us her likes and dislikes, painfully waste away? That's torture. But since you asked, I suppose that her funeral would include dancing and you all sure as hell better be there because the one thing I would need to know above all else is that my sweetheart would never be forgotten.

By the end of the day, I had had extensive phone conversations with two different doctors. We have a plan now, so today feels substantially better. K will have some imaging done on Monday in order to rule out a herniated esophagus. After that, we'll go ahead with a GJ tube (which will mean 24 hour a day pump feeding and no bottles) and/or a new fundiplication. I was comforted when I was able to tell my favorite doc that I'm willing to try anything for her if he thinks it's worthwhile, but that I'm not expecting a miracle cure. I told him that I want him to tell me when he feels like we are at the end of our options, and he assured me that we aren't there yet. (He'll probably be younger and cuter in my dreams again.)

We've been keeping K home most of the time. Just trying to reduce stress. She's mostly ok during the day, although a bit lethargic. We're planning a birthday party for her tomorrow and Jeff and I discussed canceling it altogether. We are going to go ahead with it. Maybe in part because we never know if there will be a next one. Stay tuned in a few days for a happier post with lots of birthday pics.

I want to thank all my friends for being there for me. For reading and replying to my random texts of panic, with little back story to make any sense of it. I love you all.

All Five of Us

So, if you were around me at all early in the summer, you know that I was feeling a little sorry for myself. It felt like, more and more, we were having to "divide and conquer" when it came to family activities. And at a time when I was really feeling like I needed a vacation, it seemed we had few, if any, options that would be fun for all 5 of us. It seemed that most ideas we had for getaways would be too overwhelming for Keira. Thankfully, we've come a long way since then!

A few weeks back, the 5 of us spent a weekend with Grama Joy and "Big" Papa Felix at Brownlee reservoir. We spent 3 days and 2 nights in Grama and Papa's camper. Keira loved being in there with all of us. She was happy to sit and observe as long as there was bustle and conversation happening. She loved having the whole family around. Keira also got to swim in the lake, go for a bike ride, and, best of all, ride on the BOAT! Oh. My. Goodness. Did she love the boat. The whole weekend was so fun and special in so many ways, but it was very encouraging to see Keira so happy. Granted, she did not sleep great at night, but Jeff and I both thought that perhaps this was the happiest we had ever seen her for such an extended time. Thanks, Grama and Papa, for sharing all of this with us!

So, yah, Jeff and I had never had any interest in owning a camp trailer, but now this idea seems ideal. An RV would allow us to take Keira along wherever we go, but always have a familiar setting to come back to if she's too overwhelmed to participate in what the rest of the family is doing. Even the idea of this is encouraging to me. 

Furthermore, Jeff discovered this beast...

We could secure Keira's seat inside the "crate" and that way we can all go on family bike rides! We're thinking about trying to spring for one of these for her birthday.   And maybe a trip up to northern Idaho next summer to ride the Hiawatha trail! I'm so excited to have realistic ideas of things we can all enjoy together. 

WARNING!! Shameless request for financial support: If any of you Keira fans had any intention of getting Keira a gift for her 3rd birthday, please consider a donation toward the funding of her new bike. We would appreciate it so much. I'm still working on getting the final cost breakdown, but it will cost a couple thousand bucks, at least, for the bike, plus possibly $500 more to have it shipped from Australia or Europe. 

Good times

The boys are off in Tennessee on one of their fabulous getaways with my in-laws. (By the way, boys, your neighborhood buddies miss you terribly already. There were several kids hanging out under the tree in our front yard yesterday, as if you were going to be home any minute)

So, yesterday it was just Keira and me. We had a lovely day. 

In the morning, we took Keira to get her first haircut. I didn't really want to cut her curls so much as I wanted her to stop waking up each morning with a ball of hair in each fist. Really, it's amazing that she doesn't have any bald spots. As anticipated, she absolutely loved the attention. She worked hard to hold up her head and be involved in the process. So cute. 

In the evening, we had a wonderful summer storm. Keira and I went outside and stood in the gusty wind. She laughed and laughed, throwing her head back to feel the wind in her hair (and the dirt in her mouth). 

Today I am leaving for a three day backpack trip with two of my best and most generous friends. I couldn't be more excited. As Jeff pointed out, this will be the first time since K's birth that I will be completely off the grid. It's saying something about K's stability when I'm willing to not only leave town, but leave cell phone range. 

I'm so thankful for today. 

Hanging in there

I'm sitting in the dark in Keira's nursery, on alert to record any unusual "events," while Keira sleeps with a ponytail of electrical wires. She's doing a 24 hr EEG, another test to rule out seizures. I guess her previous sleep study and subsequent EEG showed enough not-quite-normal activity to warrant another beautiful headdress. I think she looks like the girl with the pearl earring. The nurse added the green headband and red "rose," just cause she's cute. 

I've wanted to write a dozen times since my last entry, but it felt like too much work. Lots of things are too much work. Forget dishes and laundry, I don't even bother squishing the little spider on the wall in the entry and my parents didn't get so much as a card from me on their respective holidays. 

Sigh. Jeff and I have been in unusual form lately. Typically, when one of us is down the other has some stamina left and vice versa. This last week or two, we've both been out of it. As we ascertained, there's not really anything particularly unusual going on. And we aren't really sad. Or angry. It's just that our reserves have been completely depleted. Each day, all we have to go on is our rest from the night before. So we try to just cut life down to the essentials, but even then we feel completely spent by 3 pm and still have to figure how to get everybody through to bedtime. 

So, where are we? 

Keira endured 7 weeks in her cast, which made going back to her hip brace seem like getting into your old favorite sweatpants. Last week, she was finally cleared to return to the swimming pool. She still has to wear her brace when she's not in the water, but this seems do-able. The surgery seems to have had good results but there are no guarantees that the results are permanent...

...speaking of which...

There is always something. K has undone her fundoplication from last summer. Retching and vomit have become a daily occurrence again. We want to avoid surgery, so we've worked with a dietitian to make our own baby food at home, a solution that has helped omit some kids' reflux. We handmade all of her food for a few weeks and it actually seemed counterproductive. So, now we are back to her old food, feeding her by tube 8 times per day and eliminating the pump feeding at night. It's tedious and maybe not realistic in the long term, but seems to be helping with the vomiting. 

We are, by necessity, already looking ahead to Keira's 3rd birthday. This means graduating from the Infant Toddler Program, saying goodbye to some or all of her current therapists, and possibly starting school (going on the bus and everything) with the school district's early childhood program. K stole the show at her first IEP meeting, but I was very stressed for a while, worrying about what programs/therapies to get going for her in the fall. It's a big transition, yes, but when it eventually occurred to me that no decision is going to make the difference between whether or not she ultimately walks/talks/etc. (sad, but true), I was relieved. 

Recently, after writing 2 letters of complaint to different businesses within a week, I realized that I was becoming that dreaded "special needs mom" that I never wanted to be. I was feeling so tired and overwhelmed, that It was leaking out all over. More specifically, I was feeling entitled to being treated well/having good service. Like, "Do you see what I do every day? You should roll out the red carpet for me!" Or, "How dare you make me deal with this when I have more important things to do!" This disgusts me about myself. Because I think it's who we are in the little things that really shows our character. Well, at least I caught myself. But I'm not the only one. One of my boys asserted one night over dinner, "You are pretty much grumpy all the time." 

This, of all things, broke my heart and shattered any illusions I had that I'm good at putting on a positive face in front of the boys. And that's probably for the best. Because clearly a lot of the stress I feel is due to the expectations that I put on myself, something that was a part of me long before Keira. For example, I pretty much try and parent the boys as if they do not have a profoundly disabled sister. Not that we hide her from them or anything. It's just that I try to give them all of the individual opportunities, time, and attention, regardless of how much Keira requires. Again. Not very realistic. I'm learning. 

Do not get me wrong. Though more often than we'd like, Jeff and I feel like the phrase "hanging in there" is all-too-accurate a description of our state of being, there is joy. There is pride and huge smiles and lumps in our throats and tears when we see Keira engaging more and more fully, in her own way. Some of my recent favorites:

Liam feeding Keira cotton candy. 

Keira choosing her preference of pudding over applesauce by looking at the pudding, even though it was on her non-dominant left side. 

One of Keira's workers recently gave her a Jamberry manicure. This has been so fun. K seems to love the attention both during the manicure and later, when people compliment her nails. 

If she were any other kid, she wouldn't have gotten away with this, but I was so tickled. K refused to open her eyes for the eye doctor to examine her, but when he gave up and sat back to talk to me, she opened her eyes, smiled wide, and raised her hand for "more!"

Fluidly moving her head back and forth to track people walking around the room or to make sure everyone is watching when she does something she's proud of. 

Sitting in church with all 3 kids recently. The boys wanted to take turns holding her and K couldn't have been happier. She kept cooing aloud even during the sermon, but I couldn't shush her. 

Thanks for reading, Friends. 

And so it goes...

A conversation via text the other day between myself and a CMV-mom friend: 

Me: I’m depressed. I can’t help but think it’s Keira-related. I guess you’re ALWAYS on guard with these kids, huh? I mean, she’s in relatively good shape, but not so good that we can schlep her along on a good summer vacation. It seems like the family is always divided in two- one of us with K and the other with the boys. Will I ever stop wondering how long this will last? I mean, I should probably accept that this is life from here on out, but part of me can’t help anticipating that she might not make it through the next couple of years. I hate this. I’m drained. Spending all of my energy trying to look alive when the boys are home. How do you do this?
 Her: <3 I don’t know that I do.
 Me: <3
 Her: It’s hard not to be depressed. I think I’ve always been high functioning depressed and it manifests in ways that aren’t helpful.
 Me: I feel like the older K gets, the harder it is to shake.
 Her: Why do you have to shake it? You’ll never NOT be depressed to some degree. I mean, maybe you will, but high five if you do!
 Me: Because I don’t want to get out of bed. I don’t want to take K to therapy. I’d rather tube feed her than give her something by mouth that tastes good because it’s easier for me…
 Her: Ok. Those are three different things. Getting out of bed—you will eventually have to do this. Take K to therapy—at some point won’t it be at her school? And oral feeding? Really? Is she nourished? ;)
 Me: Crappy therapy will be at her school. 
 Her: Better than nothing
 Me: My depression manifests as everything feeling too hard.
 Her: I know and that’s perfectly normal for depression. It’s protective. Mine manifests as “not worth it.” What are your goals for her, ultimately? For however long she is here? 8 years, 18, 80…
 Me: I don’t know. That she stays happy. That she can participate in family life as much as possible.
 Her: And family participation totally changes. I’m not taking my kid to the pool, but I’ll suit her up and splash her next to it. She can’t vacation with us, but I’ll work like hell to find anyone who can take her for a couple of days.
 Me: What are your goals for her?
 Her: God. At the end of the day, it’s always the same, regardless of achievement: healthy, happy, loved, safe. Period.
 Me: The achievement part is the problem. It’s so. Much. Work.  All. The. Time.
 Her: So then what are the goals for you? And F--- the therapists. It DOES get easier when they are out of your house and life. It depressed me and made me feel like a failure. It still comes up during IEP season because we shine the light on all the sh—that isn’t fixed that I guess I was supposed to fix. Sorry, f-----s. You see, my theory was always that I WILL NEVER KNOW. I will never know how much output will result from a busted body. I will always know how happy she is and how loved she is in our family and the rest is science and largely out of my hands. I’m more interested in her smiling all day than achieving sh--.   I’m a horrible mom. :)
 Me: No. You aren’t. And that’s important to me, too, but there’s a reason you still feel like sh—when the IEP time comes. We always think that maybe we could have done better.
 Her: Yep. But moot point.
 Me: Tell that to my depression.
 Her: I honestly think there’s hypocricy in the special needs community.  That my child is perfect and nothing is wrong with them and God loves them blah blah but sh—we gotta fix all this over here LOL. Or, if only they were better…Feed them, give them their meds, keep them safe and alive and loved. Done. You’d already be doing better than a large chunk of parents in the country.
 Me: Right? I mean, honestly her smile lights up a room. I want her to be happy But isn’t that what special needs parents all say, “As long as she’s happy.” Yah, right. If only it were that simple.
 Her: Is she okay? Where is she at developmentally?
 Me: She’s ok. Developmentally? Approximately the same place she was 2 years ago. She could be much worse health-wise. Good hearing so far. No seizures so far.
 Her: Good, good. Those are huge wins.
 Me: Wins for what? Longer life? Higher functioning? Fewer appointments? I’m not sure Maybe having a Joe (who is in hospice) would be easier. Is that terribly offensive?
 Her: No not offensive at all. When is therapy out of your house? Or during school hours, so you interface less?
 Me: In a few months…
 Her: Do you get respite? SSI?
 Me: Yes. I have tons of help. So much that I wonder if I’m just avoiding her.
 Her: I’d argue that help there doesn’t mean you’re avoiding her. You’re diversifying her world.
 Me: Good one. I’m totally a downer right now. Thank you for being real and not getting offended. I appreciate you.
 Her: I’m always here. We’ve all been somewhere around there. Or at least us cool ones will admit it. Those other b----s can f--- off.
 Me: :)

This exchange coincided with the onset of a stomach flu which kept me in bed for two days. I was not  unhappy to be in bed for two days. This afternoon, Mom reported to me that Keira wasn't taking her bottles well. She didn't want to participate in therapy today, was acting sleepy, and was quiet. 

"Does she miss me?" I wonder. I get out of bed. It's raining outside. A leak in the basement ceiling is dripping onto the carpet. I check the mail. A new summer dress that I ordered weeks ago has arrived. I try it on in front of Keira. I dance around and she laughs. Then I use my hand to warm up her mouth muscles and feed her some oatmeal, which she eats like a boss.

And so it goes...

Baby K and the Hot Pink Spica

That's her band name and they sing a dance hit that goes, "bump up the Valium, bump up the Valium, bump up the Valium. Dance. Dance." 

Get it? Ha! I crack my stir crazy self up! 

Actually I'm not too bad currently. I took a break and went and got a brief massage of my neck and shoulders. Then I went to the Carters store to get a couple of new things for Keira. I hope buying shirts and skirts 2 sizes too big is enough to fit over her cast. Otherwise, she's going to go through the next 6 weeks wearing only a hot pink bodysuit. Fashion for the likes of Lady Gaga. 

When I got back from my little outing, Keira was asleep listening to Bruce Springsteen on Grandpa's phone. Nice. She knows what's good. 

Let me backup. We got here at 5:30 on Monday morning. The surgery went well. They only had to do 2 of the 4 possible procedures: the bilateral hip osteotomy and the hip adductor lengthening. They did not need to do the hamstring lengthening or the hip socket reconstruction (I forget the fancy name for that one). They essentially cut off the top of her femurs and fastened them into the hip sockets at a 45-ish degree angle. This will hopefully prevent future pain and allow her to bear weight on her feet, even if she never walks. 

Due in large part to our concerns, the anesthesiologist used an epidural block for pain and left it in until this morning, hoping this would decrease the need for narcotic drugs. They also put her on the PICU, largely because we requested it, and that has helped put us at ease. We feel like we know many of the staff here and many of them remember K. 

It's really nerve-racking to be the sole advocate for a person for whom you can't be certain exactly what they need or how they're feeling. Furthermore I am no medical professional, so my understanding of the options are limited.The staff has relied heavily on my intuition. On the upside, this could result in better patient care assuming that I am very into an accurate about what my daughter is feeling. On the other hand, I could be quite wrong, requesting interventions that are unnecessary. 

It's been rocky. It's been very hard to control Keira's pain and she slept very very little until last night, when they "bumped up the Valium," which seemed to help. 

She doesn't seem any worse without the epidural. And she's less fragile because we aren't worried about messing with her epidural line that is so small it's like a hair. 

I love the doctor on the unit here. He's very compassionate and candid. Today he visited and basically admitted that they had screwed up because they had been trying too hard. They were being so careful, kid-gloving everything based on her history, that they'd missed the mark. He said the answer is likely as straightforward as treating her like s typical kid and increasing her med dosages. He said it's like they were all working off of old wives tales. 

Once again, we're so thankful for Keira's fan club. Everyone's kind words and gestures are so helpful. K's therapists have all checked on her, too. Yesterday, her feeding therapist came and brought her a Kermit doll. Keira clearly recognized the therapist but gave her a crystal clear "no" face. Like, "you've gotta be nuts if you think I'm doing any work right now!" 

The boys are staying with Jeff's folks and are having a good week. Ronin told his grandma, "I want Keira to get better, but not for 11 days." He loves being at their house! 

I anticipate that we'll be here a few more days. We have to be confident that we can manage K's pain at home.