Eryn's Back in the Hospital

This is a long overdue update on Eryn.

Eryn has been diagnosed with mild Kidney Disease. In December when we took her into the ER for bloody stool we found out that her kidneys were suffering a great deal. We found during her stay at the hospital and thereafter that her kidney function improved greatly by keeping her bladder empty. So we have been working with Urology on a very regular basis to try and resolve the issue of her poorly emptying bladder. We have no real diagnosis to explain why she can't empty her bladder. We have done multiple tests, with no real answers. So the best we can do is try to keep her going to the bathroom regularly (even though she doesn't always feel the need to go), and finish emptying her bladder through a tube. She has had a suprapubic catheter placed for the past three months. This is a tube that comes out of her bladder through her belly. The tube had an on-off switch, so she could be bag-free in the day. She became very comfortable with this and would simply open the tubing after peeing on the potty (as long as she made it in time). That would ensure that she was completely empty. The problems we ran into with the suprapubic catheter were: that it needed to be changed out every 6 weeks (not a permanent solution) and each time she had to get it changed she had to go under anesthesia, then we would also have accidents with the tubing (twice we accidentally cut it with scissors, and it got pulled on really hard). Our goal during the time she had the suprapubic catheter was to teach her how to catheterize herself (through her urethra). This was a very stressful process. Sometimes after practicing I would just break down crying because it was so hard. She hated it and spent the entire time fighting me. I also hated it and felt like my attempts were pointless. The Nurse Practitioner we have been working with is wonderful. I couldn't imagine working with anyone better and she also ran into major difficulty working with Eryn to place the catheter. We started seeing a child psychologist who was very helpful. She helped us to eliminate the stress involved by setting boundaries and creating incentives for Eryn. Even with all of the help we were getting we still were unable to get a catheter in. Eryn had such a terror/fear of putting it in. We feel like the fear came from bad experiences where a catheter was placed in the hospital and ER. At those times her bladder was so over-filled that it was probably tilted and it took the professionals quite a few tries to get it in. The trauma from those experiences stayed with her and she could not imagine inflicting the same pain on herself.

So. . . here we are in the hospital recovering from surgery. We decided with the team of Urologists that the best thing for Eryn long-term was to place a Monte Stoma. The stoma is a little hole in her belly button that a catheter can slide through to empty the bladder. From what we hear these catheterizable ports can be very convenient. Our hope is that Eryn can really get back to some sense of normalcy and at the same time manage the health of her body.

Eryn is now recovering from surgery and doing pretty well. We are concerned about one of her feet that has not gone back to normal since coming out of surgery. It is turning in and she can't move it properly or place pressure on it to walk. It looks like she may have had her leg positioned during surgery in a way that put pressure on a nerve going down the side of her calf. Hopefully with some physical therapy and time it will go back to normal. Until then, she may need to use a walker.

In the mean time, Eryn has enjoyed visits from family and friends who are concerned for her. Her cousin Ileina was just here pushing her in her wheelchair and playing games with her. She brought Eryn a lot of joy. Hopefully she can go home tonight or tomorrow.

I hate to be a downer, so I think I haven't posted about Eryn much because everything has been so hard. The Relief Society has had to step in and help a few times because of the stress involved with so many appointments and all of the "homework" we were getting from Urology. But at this point we feel really good about this surgery and feel like it is a step toward more independence and normalcy for Eryn.

Lily Crawls!!

Lily just learned to crawl forward. We are so excited for her. She has been moving side to side, backwards and in circles for a while now, but she had not been strong enough to pull herself forward. We think that this is really going to help her to explore and enjoy her world a lot more.

Oh Mexico!

Joel and I went zip-lining through the jungle while we were there in Mexico. It was probably the most adventurous thing I have ever done. We had a great time, though. The views were beautiful.
Views from our hotel room. It was great to be close to the ocean again.


Joel and I went on a vacation to Puerto Vallarta, Mexico in February. It was wonderful! Joel won the trip through his job and it couldn't have come at a better time. We had been struggling with Eryn's medical issues since November and I was completely worn out from all of the doctor visits, tests and the stress involved. So needless to say, it was a much needed break. We had a wonderful time and enjoyed some real rest and relaxation.

One of the best parts of the trip was re-connecting with Joel. We were able to remember how much we enjoy being together. I also loved being able to read non-stop. I read The Hunger Games obsessively. It was so good. When I finished, I made Joel read it, while I read the second book. He loved the series as well.

Thanks to my parents who took over our kids for five days. They learned for weeks leading up to the trip how to catheterize Lily, how to follow Eryn's bladder schedule, how to care for Eryn's urine bag at night, how to dispense Eryn and Joseph's medicine and all of the other details of my kids needs. They took perfect care of the kids and really helped me to feel comfortable leaving.

Were you wondering. . .?

If you were wondering where the pictures to the right came from . . . well . . . they are the pictures my family took last summer. I didn't ever post them because I planned to send them out at Christmas. Now that Christmas is long past and none of you received these photos. . . enjoy. =) Better luck next year.

p.s. thank you Jake for taking the pictures.

St. George

We just got back from a short and greatly needed vacation. We went down south to warmer weather in St. George. The kids LOVED being able to play outdoors as you can see in some of the pictures. We also made a visit to my cousin Cheryl's and to the Wades. It was so great to see Cindy and her wonderful parents again. I love them so much. This picture just cracks me up. Cindy is posed so cute next to Joel. Don't they make a cute couple? =) Becca came along for the trip as well and I enjoyed playing games with her at night while Joel caught up on work.

P.S. Cindy sent me home with notes for the following people containing all of her contact info. She really loves all of her old friends and is determined to stay in touch. So here is the list. Email me ( meilanik@gmail.com )and I will send you all her contact info.

Amanda Croaker
Liesl Buskirk
Heather Crump
Anne Han
Jamie Smith
Noreen Carey
Melody Harvey
Claire Winstead

Feeling the loss for a friend

This morning I am running a little ragged trying to get out the door to more doctor appointments with Eryn and Lily, but my heart is in Laie today. We are thinking and praying for the Norton Family who is burying their two month old baby this morning. Their loss is great. Through this little post I am sending them my love and prayers. Baby Gavin has touched many lives including ours.

Read more here.

Two Poems

Here are two poems my dad shared with me recently. I relate to both and thought I would share them.

On Joy and Sorrow
Kahlil Gibran

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, "Joy is greater thar sorrow," and others say, "Nay, sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

The following is a piece of an article written by Janice Kapp Perry:

I Have Come to Know God

A wonderful woman in my own stake whose son David suffered from Hurler’s Syndrome, a type of gargoilism, expressed to me in an interview how difficult it had been to watch the suffering of her son through the years. Friends, noting her exhaustion, urged Donna Rae Woolf to find relief by joining a tour to Israel where her spirit would surely be renewed. Donna loved seeing all the significant things there were to see and feel in that sacred place but later expressed to me that the place where she truly learned to know God was sitting at the bedside of her son night after night when he had pain that she could not relieve, praying that the Lord would come for him:

Oh, frustrated little spirit,
Placed in an imperfect gown.
A gown of exquisite material—just a little bit upside down.
It will take a Master Tailor to repair and make aright.
He will, and the spirit and gown will unite in might.
(Donna Rae Woolf)

Look who's 1 year old!

The traditional train cake. Joseph was much more excited about this cake than Lily was.


Dalynne was one of our special guests at Lily's party. She is pictured here answering questions about life with spina bifida. We were so glad to have her there and grateful for her open and honest responses to all questions. Lily sat on her lap for quite a while eating chocolate ice cream. Dalynne obviously knows how to keep a baby happy on her lap. =)


Grandma Ruth charmed Lily almost immediately this visit. They got along very well.





These are photos from Lily's Birthday Luau. We decided to get our families together for a lot of yummy Hawaiian (or polynesian) food to celebrate her birthday. Lily was very sweet and happy the entire party. She loved tearing her cake apart and tasting the frosting. She also loved the paper her presents were wrapped in more than the actual presents. =)

Look at the last post to see Anna's baptism!! =)

Anna's Baptism

Anna was baptized by her dad just before Christmas. This was a very special occasion for our family. The day was even more special because Anna shared her baptism day with her cousin, Gabe (My sister's son). We were thrilled to have Joel's parents come all the way from Hawaii for the occasion.

One of the most memorable moments of the day was the moment Anna came walking out of the water. I was waiting on the side with a towel as she walked up the steps of the font with Joel. Her face was soaking wet and her smile was just beaming. Her face was full of joy and sweetness. This is a little picture I will keep in my mind, like the moment I saw her for the first time when the doctor held her up for me to see.

Falling into Winter

Joseph and I went out in the snow one recent morning. He had the best time and proved to me that a stick is still the best toy. =)

Here is Anna enjoying our huge piles of leaves. We could not believe how many leaves fell in our yard! What a beautiful time of year. Over way too soon.