A Day

7:00 a.m Keira is stirring and coughing.

7:30 Change her diaper. Change her sheets (she puked). Take down and trash the used up feeding supplies. Rinse tubing.

8:00 Tube feed her food, water, 3 meds (2 by syringe and one dissolved first in water), and vitamins (first crushed by mortar and pestle then dissolved in hot Keurig water).

8:10 Situate her comfortably so that I can get ready (ensure there is at least one other person in the room with her, her seat is reclined so she can’t launch herself forward too much, make sure her legs and feet are warm enough since her circulation hasn’t been good lately).

8:30 Get her dressed (she doesn’t help with this- try not too pull her limbs too forcefully or pull her hair. She is, after all, not just a baby doll) and brush her teeth with a disinfecting toothette (this makes her laugh). 

8:40 Spray her hair wet, spray in detangler (and lots of it), comb out as many snares as possible before she turns the corner from laughing to crying. Call it good at 80% tangle free. 

8:50 Check diaper bag for diapers, wipes, water, burp tube, feeding tube, food, a hair tie, change of clothes, AFOs, and 2 bottles. 

9:00 Strap Keira in the van. Pick up prescription from the pharmacy (drive thrus are the bomb!). 

9:15 Drive to therapy. Probably in Boise.

10:00 Assist with therapy (one hour of OT, feeding, PT) by encouraging her, trying to motivate her, and teaching therapists to read Keira’s signs and signals. 

11:10 If I’m alone in the car, I pull over to push Keira's head back into an upright position and possibly to burp her. Smooth sailing if Mom is with me.

11:30 Arrive home. (If she’s in a good mood, she laughs when the van bumps up into the driveway. She knows we’re home!) Change diaper. Attempt to feed via bottle (Mom does this) for 20 minutes. Give the rest through the tube along with her water. 

12:00 p.m. Stretch her legs. Do "rhythms."

12:10 Vibrating Vest

12:30 Play in stander (Mom does this). Fax medical records to support broker in hopes of getting Keira’s massage therapy paid for.

12:35 Return phone call to feeding therapist (we’re going to go to twice weekly sessions for a while). 

12:40 Listen to voicemail from Friday group. They're going to screen her on Friday (the only day I work) for daily JumpStart group. Can I be there?

12:45 Call bus company to cancel Keira’s bussing for next Wednesday. I’ll be taking her to school late so that she can meet 2 potential caregivers that I’m interviewing.

1:30 Diaper change. Attempt bottle feeding again. Feed remainder through tube. 

2:00 Nap (for me and for K and for Mom). 

3:00 Afternoon help arrives. Must stay in close proximity to Keira with the appropriate amount of stimulation (singing, iPad apps, playing with brothers, going for a walk, playing in swing) without overdoing it. 

3:10 Left message with GI with update on her weight.

3:15 Talk with case management about a sub for Mom when she goes on vacation next month. Not helpful. Note to self to call back and also to look for help on my own.

3:20 Call medical supply to refill “medical food”

3:30 Tube feeding. Clean all feeding supplies. 

4:00 Burp K. 

6:00 Dad is home. K was getting really hard to please but now she’s happy while she sits and watches us eat dinner. Tube feeding. Diaper change. 

7:00 Put on PJs (if she’s lucky, let's be honest. No complaints from her if she sleeps in her clothes) Bed time. Hook up feeding. Nose spray. 2 meds via syringe. 

7:10 Record caregiver’s hours on online database for reimbursement. 

8:00 Change her clothes/sheets because she vomited.

11:00 Keira screams. Check on her and change her position. Possible leg cramps.

Whew! I laugh at myself as I complete this list and see how long this list is. So often I finish the day and wonder what I did, why my list is so long, and why I'm not doing all of the feeding and therapy and Keira-entertaining on my own. This is a pookin lot of stuff! This is with nothing else mixed in and with the help of 2 assistants. That’s without her being sick. Or overwhelmed. Or needing to go with us to soccer practice or a football game or church.  It doesn't include laundry (Mom usually does my laundry) or cleaning (and I’ve been hiring a cleaning service) or doing any follow up calls or charting for work or getting any exercise or cooking dinner or mothering the boys in any way.

It's a lot! And it takes a village. And life is hard and all of that. Let's all (including me) realize just how much it takes. And how much we do. And as my favorite pastor's wife would say...put the rest on our "grace list." 

And here's your reward for reading this far. 

Winter Update

I have put off blogging for so so long. I think about it every day. I have so many unclear thoughts and ideas and feelings floating around all the time. There's been a hell of a lot of melancholy lately. I'm not unhappy. I'm not depressed. Jeff would describe me as sullen and withdrawn. I keep putting off writing… waiting for all of these ideas to stop swirling around and make sense of themselves. I keep waiting for the thoughts and feelings to drop them selves into tidy little bins in my brain. Preferably with labels on the front of each. But it just doesn't seem to be happening and months keep going by and I figure that even if I can't articulate to you how I'm feeling I can get you up-to-date on what's happening with Keira and the rest of us.

Thanksgiving

The Christmas season was precious and wonderful once again. Friends and family were overwhelmingly generous and supportive. If you follow us on Facebook, you probably witnessed our 12 days of Christmas. We had never experienced such a thing and it was so much fun for us and the kids. Plus, we are still benefiting from all the sweet little favors that were in the baskets!

Obviously, our favorite pose!

We left the day after Christmas and drove all the way to San Diego for our long-awaited family vacation. We had a spectacular time. A day at Legoland, a day at Sea World, and since Keira was still doing amazingly well, a day at the San Diego Zoo! I just can't get enough of my sons. They're such good kids and so gracious in spite of everything we have put them through. We had a fabulous time and I wish we could do this sort of thing as a family more often. Keira did unbelievably well! I mean, better than she does at home! She slept like a champ, and didn't even throw up at night. She seemed totally content as long as we were all together as a family and/or outdoors.

Legoland hotel

Watching a beluga whale!

Keira did so well, in fact, the Jeff and I almost wondered what we were doing wrong at home! When we got home, it occurred to us that maybe she was actually enjoying being busier. So we decided to go ahead and put her in preschool.

I went with Keira to preschool on her first day. She is far more impaired than any other kids in her classroom. They can all walk and talk at least a little bit. I wanted to show the teachers and assistants what Keira could do and how she could be incorporated into their activities. She really seems to enjoy being around the other children. So, once a week, we put her on the bus and send her off to school. Three hours later, the bus drop her back off again. I have very little knowledge of what actually happens when she's there, but she seems happy to go and happy to come home. And it's a three hour haven every Monday morning in which there is nobody home but me.

Circle time

Showing her stuff on her first day of school

The tonsillectomy in November ultimately helped Keira's sleep quite a bit, but didn't help her vomiting much. However, we seem to have found a magical concoction of meds that has nearly eliminated Keira's vomiting. We've started her back on Glycopyrolate, which dries up some of her oral and nasal secretions, which we think leads to less coughing, and therefore less retching and therefore less vomiting.

We found that Keira has grown substantially, about 2 inches, in the past few months, but has gained zero weight. We've had to increase her intake again and so far she seems to be handling that alright.

It was an epic saga, but we FINALLY got Keira's bike all ready to go. Of course, she loves it, and we're excited to have the option for exercise and/or family outings that involve Keira.

We keep having transitions. I suppose it's inevitable given the number of providers Keira has. Her PT had to close her practice, so we are on the lookout for a new PT. This loss was particularly sad for me. It was the end of an era. We had a wonderful crew of therapists for the first couple of years of K's life, and this PT was the last of the group.

I can't complain, though. Keira's current team has built excellent rapport with her and she is making progress. In fact, she's done some amazing things since her last surgery. A couple of clinicians have suggested that before her tonsil surgery, Keira may have been somewhat oxygen deprived. This would explain why, since the surgery, she has discontinued using her primitive ATNR reflex, startles less easily, and displays fewer muscle spasms/clonus overall. She's swimming better than ever before, stands up straighter in the stander, and is kicking herself around on a scooter! She even met a goal of holding up her head for a full 20 seconds. Woohoo!

Breaking records!

Looking forward, we have no surgeries this year that we know of. We have our fingers crossed that we will be able to afford to move into a one story house this year. We have a reservation for Keira to be seen in the wheelchair clinic, which will help build Keira a custom wheelchair with the capability to attach useful communication devices/tools. We plan a short trip to northern Idaho to ride the Hiawatha trail as a family and with some friends. Overall, things are looking up, or at least stable, for the year. I hardly know what to make of it.

At Brothers' basketball games

Thank you all for your continued love and support. 

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.