We miss you! Please join us at Football for Life

If you count up the months of hospital stays, dialysis, transplant, and now recovery it's been a long time since we've seen many of you! The Children's Organ Transplant Association for Evelyn team is throwing a Football for Life fundraiser and Keith and I will be there. It will be great food, a great event for families, and a great opportunity to catch up. Check out the Evite and come if you can!
If the Evite doesn't work the details are below:

Please join us for the Seahawks vs. Buffalo Bills game, food and drinks at the Edge Grill (former Fox Sports Grill) where we will be enjoying food, drinks, and Football for Life!

This will be a great event as we take over the Edge Grill to watch Sunday football and work toward our goal of raising $25,000 for Children's Organ Transplant Association in honor of Evelyn Sherman (http://cotaforevelyns.com/).

Come hear an update on how the Sherman family is doing, enjoy football and friends, and know that your donation will be "passing it forward" as you help meet some present and future transplant-related expenses.  COTA does not charge a fee or keep a percentage so all funds raised will help score a "touchdown" in honor of Evelyn.

The details:

1. Food and some drink tickets for everyone who comes are being generously donated.  That means that every dollar you would normally spend on food and drink can go straight to COTA in honor of Evelyn!

2. Kids are welcome - we'll have a kids section with cards and coloring pages that we will send to Evelyn.

3. Seahawks game starts at 1:05 p.m., but we'll be there at noon with food and drinks to watch the end of the morning games.  So come ready to cheer on your team and Evelyn's ongoing recovery from her life-saving transplant!

Please RSVP to Hope baldwin.hope@gmail.com or Karissa karissalynnetaylor@gmail.com so we know how much food to order, and please forward this to anyone who might be interested in coming, even if they don't know the Shermans.

Hope to see you all there!

What's for breakfast? Because it's going to be a great day!

Morning meds, blood pressure and temperature monitoring

What's for breakfast? Eggo waffles, hand sanitizer, medicine, and sweet family time. Since we are homebound we have fallen into habits, both bad and good. Keith walks three or four times per day and usually takes Marilouise with him. The doctor told him exercise was the key to a quick recovery.We're still spinning plates so Eggo waffles seem to be the easiest and most popular choice in our house lately (no judging).
Anyway, we are doing remarkably well. Keith and I are both tired but we are amazed at how smooth this portion of our journey has been. We credit God's grace, prayers of our family and friends (and strangers, for that matter), and all the support people continue to show us. Evelyn is bouncing around playing with her sisters. Her meds still have unpleasant side affects but they are fairly minor and we are working on solutions. Keith is doing well unless he tries to pick up one of our children. It is a constant temptation to be the helpful husband and father he always has been when he should be taking it easy. We have one more week of 3x a week labs (Sunday, Wednesday, and Friday) and 2x a week clinic (Monday and Friday). The week after we have labs 2x per week and only one clinic appointment! And we haven't had signs of an infection or rejection! Her blood pressure was 166/110 when we started dialysis. Her blood pressure is now regularly 95/58. It is incredible! Daddy's creatinine is .9 and Evelyn's is .4! She isn't eating and drinking significantly more yet but we see small signs of gradual improvement. We used to have to coax and cajole her to drink more fluid (she has a daily goal of 2.5 liters). Yesterday, she drank an entire milk box and a juice box on her own! She's often saying, "No more tubies!" by which she means no IVs or HD catheters or Foleys. We have stopped giving her growth hormone shots for a year (we'll reevaluate her growth but may not have to restart). Her scar is long (10-12 inches) but thin. She won't be able to hide it from her husband but the only thing holding her back from a bikini is her parents. Long and the short? Keep praying but give thanks. He has been faithful and we are already seeing signs of a new normal. Love to all.

Birthday and homecoming celebration

Dr Dick and the thriving patient.

Sisterly love over a puzzle

Home at last

I'm so thankful for Rebecca, Tarah, Annette, and all of our other friends and family who have kept everyone informed during our surprisingly smooth transplant week. The doctors are delighted by her recovery and how well Keith's kidney is functioning. They took one of her kidneys out and said it was terribly scarred from her kidney reflux. So thank you daddy for a fresh start!!! Keith gets really tired but feels better every day.
We are so relieved to be home today and can't wait for Marilouise and Ada to join us tomorrow. We are tremendously grateful that Keith's kidney seems so happy in its new home and that Evelyn is getting closer every day to her old self. Evelyn just asked to take a nap, which she did not take once in the hospital. She knows it's her birthday today and has asked for a banana cake and balloons when her sisters arrive tomorrow.
Love to all of you!
Julianne

P.S. - my young, especially at heart, father was in a serious bicycle accident two days before transplant. Broken nose, broken teeth, broken heart at missing Ev's big day. Nevertheless, he came to visit Evelyn almost a week after his accident and she was thrilled. Thanks for all of you who heard and prayed for Grandpa Kvernmo's recovery!

Saying goodbye to our lovely dialysis nurses.

Last meal before transplant

New pajamas from Grandma Sherman.

My brave, sweet man.

My brave, sweet baby.

Ev asked to sit up the morning after surgery and didn't want to lay down for 24 hours.

Finally fell asleep when I held her.

Sip of apple juice and 5 ice chips!!!

Coloring is hard when you've got 5 IVs, BP cuff, monitors, and a catheter. But she did it!

No showers? How about a shampoo cap? What they won't think of next.

"Grandpa, what happen to your face?"

Fun with Coban (purpose adhesive bandages were everywhere)

Waiting for Daddy and to leave ICU (she sat there for 4 hours!!!)

Kidney and owners reunited at last!

Semi-clean and totally cute in her new room and clothes.

Puzzle time!

Chill time.

Auntie Jennifer reading before procedure to remove HD catheter.

Amy, from Children's Child Life brought Ev a birthday present!

Well prepared for HD catheter removal. Lip gloss? Check. Purple purse? Check. Rubber chicken? Check.

On a roll in our red wagon. Exiting swiftly.

"Read to me, Daddy!" Home at last.

Top Ten Anti-crazy list

How are we surviving the 5 days until Ev and Keith undergo major surgery?

"I'm excited transplant is soon, Momma."

10) Pull frozen meals out of the freezer or thank friends when they bring the warm kind. Hot dogs also a winner.
9) Blog feelings; don't vomit them onto strangers to explain spontaneous tears.
8) Avoid public places. No illnesses allowed. Don't apologize for total germ phobia. Even if it looks like crazy, it isn't. I think.
7) Don't clean the house. Gratefully accept generous family members gifting housecleaning for a couple months.
6) Walk to the grocery store and let kids walk at their own pace. Twice as long, twice as peaceful.
5) Ask for an in-home hair stylist referral. Thank friend who brings stylist to home (first trim I've had in 9 months).
4) Listen to a 5 year old's silly stories. Be sure to catch the cute smile of satisfaction at the end.
3) Sing "Where is Thumpkin?" with one's 2 year old in the hospital cafeteria because she wants to. Loudly if necessary. Even "tall man", just don't look at who's looking.
2) Plan a date night for Sunday afternoon/evening. Select the best babysitter (I have her number if you need it) and the best date in the world (he's my hero).
1) Don't finish lists.

Just plain crazy

Happy crazy

Administrator of beauty

Chief Silly Officer

Always playing it cool

The best man I know.

Enjoying the eye of the storm

Anticipation
Yesterday marked two weeks until Ev's first transplant. The anticipation is very similar to expecting a baby. Knowing the big event brings lots of changes, wanting to have everything set because the next 6 months will be difficult. In the meantime, our lives have been surprisingly peaceful. Thanks to all the wonderful people who have brought us meals and watched our non-dialyzing children, our lives are predictably chaotic. I didn't think these words would ever come from me but I'm really thankful for dialysis. I've learned a lot about dialysis, its blessings and curses, these past few weeks. The biggest thing I've learned is that I'm thankful for the pause it provides us before transplant.

Did you know?
1) Dialysis began in the 1940s.
2) The first adult outpatient treatment center started here in Seattle 50 years ago (Thank you, Northwest Kidney Centers).
3) The word comes from Greek dialusis,"διάλυσις", meaning dissolution, dia, meaning through, and lysis, meaning loosening or splitting
4) The three kinds of dialysis are hemodialysis, peritoneal, and hemofiltration.
5) Dr. Willem Kolff, a Dutch physician, constructed the first working dialyzer in 1943 during the Nazi occupation of the Netherlands. The first-ever patient successfully treated with dialysis was in 1945, a 67-year-old comatose woman regained consciousness following 11 hours of hemodialysis with the dialyzer, and lived for another seven years before dying of an unrelated condition.

New hardware
Keith & Evelyn arrived for dialysis last Wednesday at 8:00am. Unfortunately, her hemodialysis catheter was stuck so they had to replace it. They fit her in the schedule at 5:30pm, afterwards heading to dialysis. In those 9 hours of missing dialysis and her medicines (she had to fast before surgery) her blood pressure was back up to 166/100 (that's scary for a 2 year old who's ideal would be 95/58). I realized dialysis has literally given Evelyn life until we could get scheduled for transplant.

Unexpected Preschool
Keith takes Evelyn to dialysis Monday and Friday. I take her Wednesday and Saturday. Besides getting to spend a lot of one-on-one time with her, we have had the opportunity to do preschool (ABCs, numbers, cutting, tracing, gluing). Evelyn has to sit in her chair for more than 4 hours. A lot of the children watch movies and play video games. I'm not sure if it is because we don't have a TV but Evelyn's media limit (before she falls apart and gets really cranky) is about 30-45 minutes. That leaves us with a lot of time to fill in with other activities. Thankfully, we get to play with play dough. We do Legos. We read books. While it's not always fun (dialysis sometimes makes her "cramp" or throw up or cry because she feels lightheaded and miserable) overall she's made the best of it.

The eye of the storm
On the days when Keith takes Evelyn to dialysis I stay home with the other cuties. Our house was hit by a minor bug this week so we stayed home from our school co-op this Monday. Marilouise, the social butterfly, was so disappointed to miss her friends and her class's "back-in-time travel". However, I painted her nails after math and reading and thawed out a frozen treat from our friend, Kirsten (sweet potato casserole). We sat and read a book together on the couch during Ada's nap. This isn't what I expected with dialysis. And it is thanks to all of the people in our lives who are loving us in practical ways and lifting us in prayer. I don't think I want to build a summer home here but our lives are actually quite lovely.

Nail therapy

Saturday after a special service at church

Ready or not, here comes transplant

I've been thinking about The Princess Bride. "Let me splain. No, stoo much. Let me sum up."

Wednesday, September 26 - official diagnosis "renal dysplasia", "vesicoureteral reflux nephropathy", and "end stage renal disease".
Thursday, September 27 - transplant scheduled for November 28
Wednesday, October 3 - transplant rescheduled for October 31

My treasured mug

We are really excited to share this news with all of you who have walked with us up to this first milestone. It took me a few days after we heard the first scheduled date to feel happy about the delay (we had thought for many months it would be in October). One month may not seem like a lot in the grand scheme of things but 4 days a week for 6 hours every session is a lifestyle and not one one wants to prolong. A couple things helped put my thoughts in perspective. First, I asked God to help me. Second, my mother gave me a Bible bookstore mug. Now I have been known to mock Bible bookstore paraphernalia but I must tell you that I treasure it because it came from her heart and because it spoke truth directly to our circumstances. Third, my husband has met many of the other patients and parents in the dialysis unit (a 12 year old has been on 3 day a week dialysis for 10 years, received his first kidney 2 years ago and is back in dialysis. His father had to lose 40 pounds to donate his kidney and they live in Bellingham!). Their stories have reminded us that we are blessed:

1) Keith is a match and he's, in my sister-in-law's words, a bean pole.
2) We live close to the hospital.
3) We have family, friends, church, co-op, nurses, and doctors who are caring for us in so many ways.
4) I found my sense of humor at the beach (it had been on vacation there and couldn't get a ride back).

So when they called today to tell us we were scheduled in a little more than three weeks we were overjoyed. But it wasn't the change in circumstances that made me happy. God had already gifted that to me. The news today was just icing on the cake.

Not robbing a bank.

Mary Poppins was right - kites are therapeutic

Our Take Them A Meal page

Lunchtime in the hospital's hallway

The past few weeks we've been blessed by Marilouise's school co-op and other friends with lunches, snacks, dinners and treats (thank you!!!). Others have asked about bringing us food. Our friend from church, Michelle Housel, has graciously organized a Take Them A Meal page, if you wish to join the effort. Our humble and grateful thanks.

Two years coming: Sherman Family Vacation!

Most of our happy throng, minus the photographer and Uncle Jimmy.

Ada's arrival postponed our trip the first time. Evelyn's dialysis threatened to do it a second. Although Ev, Ada, and I left today for dialysis, Keith's mom and dad, aunt and uncle, and brother made the big trip out West so we could all spend a week together at the Washington coast. Nothing like a few days playing on the beach to adjust the attitude. Keith and I went for an afternoon run on the beach. Marilouise and I spent some much needed "silly time" riding bikes on the beach. Evelyn built sandcastles with Grandma. And Ada ate sand.

Walking to the beach

Grandma reading Richard Scarry.