Tuesday, November 5, 2019

A Great Gift

731 days ago (two years and one day - November 3, 2017) started like any other day. We had been a family of five for almost two months. Anyone that's had a baby recently would know it was time for baby's well check. A well check is a doctor appointment for a check up to see that you are "well" and for babies and young children often includes immunizations and some surveys on typical development. I took Luke in expecting an easy visit.

In the couple weeks before his visit he had been checked out twice; once at my six week postpartum visit and again at urgent care the week before. We had noticed him making some strange rhythmic movements  (baby crunches). Our girls hadn't done this, and at this point we had gotten used to the fact that every child is different so we weren't sure if it was just a quirk or something we should be concerned about. The midwife that delivered Luke is also a naturopathic physician so I brought it up at my postpartum visit and they checked him out not noting anything if concern. They didn't actually see the movements and at that point we had not taken a video. Over the next week we continued to see the strange rhythmic baby crunches so I took him in to see the urgent care pediatrician at The Vancouver Clinic. This time I had a video. The doctor said it was probably just reflux and sent us on our way.

By November 3, 2017 I had been told twice Luke looked fine so I went in to his well check ready to run it by his regular pediatrician, but ultimately expecting an ordinary visit. I mentioned he wasn't smiling yet and showed her the video of one of Luke's spells. She suggested we schedule a neurology appointment just as a precaution. She mentioned a rare seizure condition called infantile spasms that she had seen one time about 19 years ago that it had some resemblance to. She said she would put in a referral for an EEG (the test where they glue a bunch of wires to your head to measure your brain activity) and told us it would probably be about a month before we were seen. She left the room to take care of that and when she was gone Luke started having a spell. By the time she was back he was still doing it, so she was able to see first hand what was happening. We decided to hold off on the shots just in case (some people have adverse reactions and we wanted to make sure we had a clear picture of what was happening and why.) The kids and I hurried home to eat lunch and get Maya off to preschool.

As we were loading up to get to school a call came in from the pediatrician. She had spoken with the neurologist and they wanted us to head down to Randall Children's Hospital as soon as possible and bring an overnight bag. I hadn't even had a chance to look up infantile spasms and now I had to get Maya dropped off and get Luke down to the hospital. My day quickly began to unravel. I was worried, scared and in tears by the time I was walking Maya into her classroom. Those of you who know me know I'm not one to easily cry, let alone let other people see it happening. Thinking back now I'm not sure if I talked to my friend Amanda in the school parking lot first or if I had already called Aaron at work. (FYI, everyone should have an Amanda. My life and my family's lives would not be the same without her and the whole Kerber family.) Amanda did her best to calm my fears and offered to help in anyway she could (did I mention she has just had a baby two weeks before). I made it back home coordinated with Aaron and as soon as he headed home for lunch I left him with Stella and headed down to the hospital.

I got Luke checked into the hospital and we were taken to a room on the 7th floor (acute care). Our room was located just across from the nurses station. From there I could hear the doctor on duty questioning why we were even here. (I have some words for you Dr. Oliva Whateveryourlastnameis.) We waited for a tech to come get Luke hooked up to the EEG and got one just before they were heading home for the day. I didn't know what to expect, and after two years it's a bit muddled, but by that evening it was confirmed that Luke was having at least two types of seizures. I believe they started him on a loading dose of Phenobarbital that night. Aaron had been with the girls, but after that I asked him to come join me. He quickly coordinated with his brother Kyle and came down. A neurologist stopped in briefly on the 3rd to introduce herself and the nurses kept saying the neurologist was going to come back see us, but it wasn't until the late afternoon or early evening on the 4th that a different neurologist came in. The look on her face said it all. She did her best to hold back tears as she informed us that Luke had Ohtahara Syndrome. There wasn't much detail other than he was having hundreds of seizures and that we should consult epilepsy.com. Here's the prognosis listed there: The outlook for children with OS may be grim. Many children progress to have infantile spasms (West Syndrome) or Lennox-Gastaut Syndrome (LGS).  Some children with OS may die within the first 2 years of life. Those who survive are typically left with severe physical and cognitive disabilities.
It was updated since we first read it two years ago. If I remember correctly (which I feel it was seared in to my soul, crushing every dream I had pictured for our families future) it used to say that 50% of children will die within the first two years of life. Thanks to advances in medicine that has changed, and after that day (did I mention it was also my birthday) I am forever changed.

The next days, let's be honest months, were hard. I wanted to die, anything to reverse the news. I was angry that God would give me a son just to take him away. "What kind of crappy gift giver are you God!?" It wasn't fair. I felt I had learned if you play by the rules and check off all the boxes you should get the outcome you expect, right? And that all went to shit in a couple days. The dreams I had for our future, you know the family road trips to see that national parks, were dashed away without anytime for me to prepare.

I had been angry at God, and I finally told him, fine if you are going to give me this then you better give me whatever I need to be able to handle it. Our circle of friends and family stepped up and even expanded to include people we'd never met. I'm not even going to attempt to list all those that helped, but here are some of the ways we were supported: a lot of child watching, food, prayer, well wishes, visits, etc. The cloud of depression lifted - I'm not sure if it was suddenly, but one day a couple weeks in I noticed it wasn't there. Life was still hard, but it didn't feel so dark.

I've heard many conversion/reversion stories, but as someone raised a cradle Catholic, eager to please, and easily guilt tripped I had not yet experienced it myself. I wondered what it would be like and was a little envious of those that had experienced them. I was drawn to the idea that these people had received outside confirmation that they were on the right path or being led that way. There's a reason "be careful what you wish for" is an idiom! Listening to the story and actually walking that path are two very different experiences. To put it simply, yes, God was and is working on my heart and challenging my ability to trust in his promises.

Well, it's been two years and my little boy is doing so much better than the prognosis that hit us like a ton of bricks. We've had all kinds of tests and labs and nothing has been found as a cause for his epilepsy. Luke has been seizure free since December 26, 2017 and med free since August 2018. He has some developmental delays, a few sensory quirks, and some unknown visual impairment (as in doctors with specialties I didn't know existed can only give it a general name that is basically your macula isn't right). We don't know what his future looks like, but we are getting more comfortable with living in the now and enjoying this gift of a boy that two years ago we thought was slipping through our fingers.

My birthday has become a time of reflection, mixed emotions and gratitude.  Thank you to everyone near and far that has been a part of our family's story. We couldn't be where we are without you. Oh, and P.S. I'm terrible with getting thank yous out, but please know the love you've shared hasn't gone unnoticed. Ok, time to break out another box of Kleenex.

(For those of you that like knowing all the details I'm happy to share, but there is too much for one blog post. Feel free to ask and I can fill in some of the many gaps that went unmentioned.)

Saturday, October 18, 2014

Maternity/Nursing Wear

This one's for you Shalyce, and for me in case a terrible case of Mom brain ever sets in.

What size to buy?
Just like all your normal clothes sizes will vary from brand to brand, but I've found using their size charts usually gets you to the right size. I recommend going to the stores that actually carry the product and trying it on, even if you end up buying it for a better price online or finding the same stuff at an outlet or discount store. Motherhood Maternity even has these pillows you can strap around your belly so you can visualize how it will look when your tummy starts to pop. Aaron and I got a kick out of that! Also, I definitely needed a bigger size the last month.

Where to shop?
If you are open to used clothes, bum them off your friends, visit kids/baby consignment stores, and check out events like this one: JBF.

For new clothes this is what I've found...

Burlington Coat Factory: Discovered this post-pregnancy and was quite surprised at how much of a selection they had. Definitely will check it out if I'm ever in the market for more clothes.

Macy's: Some have a small section where they carry Motherhood Maternity clothes. Most of the store coupons don't apply to this section for some reason, but I have found some great buys on the clearance rack. $12ish jeans!! But if you can find stuff around $20 you're not doing too bad.

Old Navy: Have a pretty good selection of basics online, and you can search to see which stores carry maternity items. Sign up to have their emails sent to you so you know when they have sales online. I want to say they have a pretty good sale sometime in November. I've gotten mostly tops from them and the XS or S fit. Just you basic solid colored shirts and a couple sweaters or sweater dresses. They also have pretty good choices for nursing tops. I got one similar to this, Maternity Scoop-Neck Pleat-Front Tees
but without the cutout above my engorged boobies. It was in the maternity, not nursing section, but was definitely was too short to wear in later pregnancy, but had some elastic around the collar so it could be pulled down for nursing post pregnancy. I was not a fan of their basic nursing tanks because they were ridiculous to latch and unlatch... maybe they've fixed this problem? The other nursing tanks that had the wider straps and the crisscross v-neck front were nice though. I did find a cute nursing tank, that had a cowl neck front and a built in shelf bra that you could pull up to help baby quickly and quietly get to the goods. Can return some stuff bought online at the store - it's usually labeled in your check out basket if you have to mail it back.

Gap: I got a couple shirts from them online, and they seemed to run a little larger compared to the OLD Navy ones. If you are getting stuff from Old Navy check their website because they let you use one shopping cart, which is great of you are shopping when you have to spend a certain amount to get free shipping. I got this nursing top and it was definitely on the big, and not very flattering side. May have been better when I had a bump. Glad I found it on clearance for like $9, and not the $35 they have it for now.

Sears: I would have never thought to look here, but they have a small section that often has deals like buy one get one free. I have several solid color t-shirts, some work type pants and tops. They all seemed to hold up pretty well. Size small was what worked for me. Sale prices on short sleeve t's were like $6-7, long sleeve was $8-15, and more work type ones were $15-25. Pants and jeans were $15-35 on sale.

Target: I liked their jeans. They also come in number sizes! Just pick your usual size, but the big bonus is most stores carry these so you actually get to try them on to decide. They also have the belly bands that you can wear with your regular pants. Both the jeans and belly bands are made of a polyester fabric that I found more comfy than the cotton ones I got on etsy. When you sign up for a baby registry there are coupons they give you and some of them are for the maternity clothes. So you may want to sign up before you buy, even if you are not ready to register for items. The nursing bra and tank selection is pretty good here too. I would stay away from bras with under-wire though. It really cuts in to you, especially when the fullness of you breasts is constantly fluctuating. They had some sleep ones that had a racer back, they were comfy, except the top of the racer back went up really high (like past the big bone at the base of your neck.) I was a fan of this bra (for non-working days) Bravado , but they had a basic version that cost less that I'm not seeing on their website right now. This one also worked wireless bra. Side note last year in January, right around MLK day they had a huge baby item clearance. Stores here had strollers, baby swings, sheets, clothes, etc. for 70% off. It wasn't everything, but still some good choices. Aaron and I picked up this stroller for quick trips and traveling First Years Ignite for $21. We chose it because the handles go up higher than some umbrella strollers, so you don't have to hunch over to push it (good for taller people like you guys), and it wasn't $100+ like the Maclaren strollers. But you can always check for those on Craigslist. My friend scored one for $20 at her neighbor's garage sale. Can return stuff bought online at the store.

Kohl's: I had some good finds here, especially for pants. Their stuff is Motherhood brand I believe. They have sales and extra coupons you can use often. Usually by the baby stuff. Also, once baby is her they have killer deals on baby clothes. Like $10 off a $30 purchase + an additional 20% off. Sometimes even two $10 off coupons stack. I haven't bough anything from them online so I can't speak to that.

Motherhood Maternity: They have it all in one place. However, it tends to be a little pricier, but still not outright crazy. Great place to find what you like, then keep in mind as you check out other places. Most of the other stores mentioned carry Motherhood items, so shop around.

Zulily.com: Carries all kinds of baby, maternity and mommy stuff. Only downside is because it's a flash sale kind of setup there are usually no returns. If you buy an item, you get free shipping on your other purchases that day, or sometimes weekend. Keep them in mind for postpartum support wear too (for your midsection).

Bamboobies: My absolute favorite nursing pads. They come in two absorbencies and are machine washable. I think I ended up with a stash of about 5-6 of the overnight pairs and 9-10 of the day time pairs. They often have free sample weeks. You do pay $3 for the shipping on these, but they are worth it! Bamboobies

What do I need?
Depending on what your work dress code is I would say 1 pair of work pants for each work day, and 3 pairs of jeans (unless you are a big legging fan - you could get by with less). At least 7 tops, but keep in mind they don't necessarily have to be maternity - just long enough to keep the belly covered. You probably already own stuff that works. If you wear a lot of dresses these numbers could go down even more. A couple belly bands which will work double duty - letting you wear normal pants longer, good for postpartum, and also for covering the belly if your maternity shirts get too short in the last few weeks of pregnancy. Keep in mind how often you want to do laundry. As far as a coat. I never got one. Mine still fit well enough, and when I was really big I didn't zip/button them up because the pregnancy hormones were keeping me plenty warm. If you plan to be outside for extended periods of time (like have season tickets for football) then maybe get one.

Pant types: Check out his link for pant types. Pant Types They are the same across brands, but they might be called different things. I preferred the secret fit belly (once you have a belly) and the underbelly/early&after belly for early on and when you are not back in your non-pregnancy clothes yet.


Another post on what baby gear ended up being our must haves and flops to come soon!

Monday, February 6, 2012

DECEMBER - And then it was BTS. (RUN... save yourself!!) 5 of 5

Whew! Made it through report cards this month... Aaron's favorite time of year and mine too! (NOT! ...to use the favorite 90's phrase). Luckily, Aaron has helped me build a report card comment generator in Excel that I've been able to use to help speed up the process. It can be incredibly time consuming to write personalized paragraphs for 53 students and we don't have the comment codes that middle and high school teachers get to use. This allows me to communicate personalized information about each child and reduces the time needed to generate these comments. Each time I use it I think of new ways to improve it. I find it easy to use, but it is not super user friendly for those that are not technologically savvy. I would like to make a version that would be more user friendly, but just haven't devoted the time to figuring out how. Anyone wanna help? :)

This year we celebrated Christmas in Walla Walla. We enjoyed homemade tamales with my family and made it out to an ugly sweater party. How do we look?

After Christmas we headed up to Vancouver, B.C. to meet with Aaron's lomg lost brother Brock ;). We had been to Vancouver before, but had a much better experience this time around. We stayed at the Sandman in on Davie St. and were able to enjoy a 23 story view from the balcony. The hotel was walking distance to many eateries and shopping. It also had a nice little gym and steam room. Our first night there we enjoyed dinner at Moxie's. Afterward we walked around town and took in some music from a cover band, but left soon after a creepy looking guy kept trying to follow us around the bar.
Mmmm....peach bellini
The next day we met Brock, Emily and the kids at the Vancouver Aquarium located in Stanley Park. Aaron and I would like to go back and explore the park a bit more.



While at the aquarium we took in our first 4D movie. We watched the Polar Express and it was quite the experience. The seats shook as the train barreled across the screen, and water splashed us as the train plummeted into a half frozen lake. It was a whole new way to experience a movie and we would definitely watch a 4D movie again.

Unfortunately, the next day Aaron had a full blown cold, which for him is severely dibilitating. :) We stayed around the hotel and ventured out for a walk around lunch time, but quickly came back as Aaron's symptoms worsened. We made our way back home the next day (Jan. 31), and spent the night in as Aaron nursed his cold.

Wednesday, January 18, 2012

NOVEMBER - And then it was BTS. (RUN... save yourself!!) 4 of 5

November - San Jose & San Francisco, Pro-Education Demonstration
My family came up to visit for my birthday weekend bringing a John's Bakery cake in my favorite flavor too!
Then for Aaron's birthday we headed south to San Jose where we visited with Kyle and Shalyce in their new location. They were great hosts and we had fun touring the area with them! Here is a video slide show of our trip.

After the Thanksgiving holiday (our first here in Vancouver - Thanks for hosting us Mike!), I went up to Olympia, the state capitol for "Day of Action." It was interesting to see all the different demonstrators. I don't think I'm cut out for protesting, so you won't see me at the Occupy Camps anytime soon. Here are some shots of the day.




OCTOBER - And then it was BACK TO SCHOOL. (RUN... save yourself!!) 3 of 5

October...Race, Pumpkin Carving, Halloween.
Hybrid Adventure Games: My cousin Claudia joined me for the Hybrid Adventure Games on October 1. It was a hell of a race. It was held at Ski Bowl in the Mount Hood Recreation Area. This race had five parts.

1. Adventure Run: We ran up the ski hill to the top of the first lift, then up, up, up to the lift that was higher up. There were great views, but the climb slowed to a walk not only because of the crowd, but because most of us were not used to running straight up the face of a MOUNTAIN!!

Once we got to the top we had to make our way back down. Running down a mountain also has it's challenges... downhills covered in mud or loose rocks. Most people made it down without out issue, but those who know me well know I'm not like most people ;). I writhe at the mention of pregnancy and stretch marks it is sure to leave behind, but love to show off battle scars. Here are the ones I earned after sliding on a loose rock and being left with only the decision of which part of my body would take the hit.
As you can see I picked stomach over head. I also got a few stray cuts on my legs and arms.

2. Obstacle Course: Right after the run. We had a chance to grab a quick drink and then were shuffled to the starting line of the obstacle course. We jumped through tires, jumped over wooden hurdles, and under barbed hurdles. Then up a ramp, and under more barbed wire, but this time we were army crawling. Next was the slip 'n slide; keep in mind the rain was threatening to pour and the temperatures were in the 50's. Ski Bowl has many fun activities for families in the winter as well as the summer. The course made use of the bike park and we ran on different wooden obstacles, made our way arcross some wooden poles balancing as best we could. Finally we faced a wooden wall. I ran and tried to hop up on top. After two failed attemps I used one of the support pieces to lift myself high enough to get over the wall.



3. Archery Range. After we finished the obstacle course we got in line for the Archery Range. It took FOREVER! This was the first year of this race and they were still working some kinks out. Aaron finally got to check out my injuries and had to make a dash out to the car to get me some warmer clothes as the rain was starting to fall and the long wait in line was quickly cooling me off. All that waiting and not a lot to show for it. Both Claudia and I failed to hit the bullseye on our four tries.

4. Tire Flip. The line here was a bit shorter, but my muscles were not ready to get in gear again after all of that waiting at the archery shoot. We flipped huge tractor tires. Claudia kicked my butt! I did finish though.

5. Keg Toss. People were in for a scare when I showed up here!! I watched a coulple videos on YouTube to prepare for this one and let me tell you it's not as easy as it looks! I chose a spinning strategy and let go once I built up some momentum. However the keg went flying towards the crowd up people in line. Oooops! Claudia tossed the keg sans spinning sans spin and sent it flying in the right direction.

And what was Aaron doing other than taking a few pictures...

...using our post race drink tickets!


Cats vs. Vikings: On October 8th we enjoyed a beautiful day at Jeld-Wen Field watching the Cats take down the Vikings. They actually had a good lead then let the Vikings come way to close for comfort.

They had a great season this year, but didn't survive the playoffs. Later that night we enjoyed Oktoberfest at Aaron's boss' place.
Girlfriends Half-Marathon: Aaron's sisters and our nieces Paige and Brooke came out to visit mid-October. Kara and I ran the Girlfriends half-marathon and had a blast!



Carving Party: We also had our first pumpkin Carving Party this year. Ken and Jen were this year's Master Carvers. You can see our creations here: Pumpkin Carving 2011
Halloween Costumes: Aaron wanted to make these Sesame Street Yip Yip costumes last year, but we were unable to get our act together. This year we planned ahead and he was thrilled! He is so silly and enjoyed every minute refusing to break character.

Monday, January 16, 2012

SEPTEMBER - And then it was BACK TO SCHOOL. (RUN... save yourself!!) 2 of 5

September... BACK TO SCHOOL... nuff said. At least those of us that are teachers understand.  You teacher/moms are rock stars! I still do not know how you make this humanly possible. September was pretty much all back to school with one quick trip to Walla Walla for our nephew Israel's first birthday.
Birthday Boy

And then it was BACK TO SCHOOL. (RUN... save yourself!!) 1 of 5

So school hit and I disappeared. Well kind of, I've still been out and about, but the planning and grading took precidence over the documenting of our day to day. Anyway here is a synopsis of the last 4.5 months :). Part 1 of 5.

August...
Goodbye Mazatlan. We made our way back from Mazatlan. We stayed at a rental house called Casa Bonita and we're thankful for air conditioned rooms and pool! The house was located in the historic part of town just 1 block from the beach and boardwalk (malecon) and walking distance to the open air market, cathedral (aka Sauna - not air conditioned), and bus stops.  Despite reports that travel in Mexico is not advised, we went and experienced not a single dangerous hiccup. Don't do crap you wouldn't try to pull at home and you should be fine. COMMON SENSE people!! It was incredibly HOT there, but with back-to-school looming I was not ready to come back to reality. Here are some shots of the house...I'm happy to pass on contact information if you should wish to check it out in person.

Pool

Kitchen/Dining/Living Area

Entry to Casa Bonita

Cathedral
Quilting: I was interested in learning to make a quilt, so I signed up for Quilting 101 at JoAnn's. Here is my project.
And I got a sewing machine in November... so maybe in the next year I will finish a quilt and share it.

Tree Removal: Those of you that have been to our house may remember we had three large trees in the front yard. YES, I said HAD! August and September brought the removal of these trees. Why? Because we are the anti-tree huggers, hate pine needles, and want to kill the planet. RIGHT... The trees were in bad shape and constantly dropping branches... of which two caused damage to vehicles. We had an Arborist (tree scienentist) come take a look and he said they would be goners in the next 5 years or so. Aparently the tree roots were not well protected during the construction of our house and driveway. We were able to get the builder to agree to cover half the cost of removal, which was nice because our 1 year warranty on all things house was long expired. Thank you New Traditions! Sorry trees! My dad, uncle, a family friend and Aaron's cousin all came and helped in the effort.


They took down two of three trees. Then chooped away at the tree rounds which were sold as firewood. The third tree enormous tree was removed in September by a pro as the guys were a little wary of it's size and a mistake would have been VERY costly.

Timbers Soccer that is... Portland now has a major league team and it was fun to go watch them and listen to the Timbers' Army chant. They won the game!