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Funeral Arrangements

Calling Hours, Funeral and Burial will be at

Gap View Mennonite Church

5385 Mine Rd. Kinzers PA 17535

Calling hours are on Saturday Feb. 1, from

2:00 PM- 4:00 PM and from 6:00-8:00 PM.

The funeral will be on Sunday Feb. 2, at 10:00.

If you need lodging or transportation from the airport, contact Mark at 717-283-6558.

Everyone is welcome to attend.

We also plan to record the service and post it online so those of you who can’t make it can view it later if you wish.

Thank you for all your prayers! We feel God’s arms around us even though our hearts are breaking.

 

 

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she is Free

Kierra went to be with Jesus last night around 9:00PM.
We are heartbroken but so thankful that she is indescribably happy.
Funeral arrangments will follow. Right now we are looking at a Sunday funeral.

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We are cozy by the fire today. Kierra is unfortunately a bit too cozy. She sprung a fever last evening and has had one all day today. She doesn’t seem too sick other to be very sleepy and not very talkative.

On Wednesday she had an appointment with Dr. S. at The Clinic. He was very encouraging. Instead of stressing out about getting all her calories in every day with her formula, we are backing off a bit, but still keeping her hydrated. The pay off has been totally worth it. Instead of crying most of her awake time with discomfort, or gagging and wretching, she is much more comfy. It’s a fine balance to choose between calorie intake and comfort. She has lost a bit of weight and does not have as many wet diapers, but so far I think she’s OK.

This fever seems strange, but hopefully it’s nothing serious. Thankfully, we got her off a few of her medications last week too, so her schedule isn’t quite as crazy full of meds.

Yesterday, we redeemed a free babysitting coupon from Mark and Sadie. The kids loved getting out of the house and Steve and I had a wonderful time eating at Macaroni Grill (we even had a gift card:), visiting Lancaster’s Market, reading and sipping coffee at Barnes And Noble, and dreaming and talking and enjoying the silence of the winter wonderland outside.

Hope you all have a very happy week!

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Our Indoor Hammock

Need some entertainment for your children these winter days?

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Kobe is so thrilled with his new swing! 🙂 The best part is that it is also a hammock…a toy sling and any other imaginable thing a two year old makes of it.

Kierra uses it for her rock a bye comfort. I add a folded blanket for her head so she is more comfy. She didn’t just totally fall in love yet, with all her bellyaching, but it’s still a fun thing to do with her.

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It’s as simple as knotting two bed sheets together (or maybe a king size knotted by himself) and there you got it…a wonderful indoor swing to beat this January freeze. Oh, and did I mention that it’s portable? 🙂
Kierra had one wonderful day this past week. She was relaxed and comfy and all into sitting in her Kid Cart with the new tray and the pummel for between her knees. We are loving the tray, since it brings things right to her level. The pummel works wonderful in helping her not do her ‘scootchy’ down thing anymore!
Kobe got up on her level too and they played with playdough for a long time.

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Isn’t that just such a typical boy! 🙂 And look at her ‘yuck’ face. I LOVE this picture! It’s so rare to catch her expressions like this…they are so fleeting and brief. When they pop out, I just smile to see the little girl breaking through!

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She’s still struggling with lots of gas pains and air bubbles in her tummy, which still causes bouts of reflux. Thankfully, it’s not as constant as it was, but we are still praying for more relief for her. Any suggestions?

Kobe and I went to church yesterday for the first time in weeks. Steve stayed home and kept Kierra comfy. I was so refreshed in going! One of the verses from Habakkuk the speaker read stuck with me…

…”Look and be amazed!

I am doing something in your own day.

Something you wouldn’t believe

even if someone told you about it.”

Isn’t that just wonderful and amazing! (and scary if we wouldn’t have God) God’s got some big plans for your life, no matter how small you feel, or how many things in your life don’t make sense right now.

‘It’s so good to know the Maker of our hearts!’

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At Least We Are Home!

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(artwork by: Kierra with some help from Mommy:)

Life does not have to be perfect to be WONDERFUL!

Right now our days go from perfect to wonderful to stressful. It’s a bit like the weather right now. From clear moon warming the cold sky to mist hanging heavy like the Garden of Eden. From sunshine and birdsong to grey ceaseless rainfall.

We came home on Sunday with a happy little girl, a tired Mommy and Daddy, and an energetic little brother. It is wonderful to be home. In fact, it was so wonderful on Sunday that after we unloaded the van, we piled everything in rooms and let it sit quietly and roominate  🙂  We indulged in hot coffee and two children and the comforts of homey blankets and couch.

On Monday, Christene came over for a few hours to help out and watch Kobe while Kierra had Occupational Therapy . The nursing agency came to get all her paperwork caught up to speed, and I made a quick trip to the pharmacy.

On Tuesday, we did laundry and cleaned up and organized and did Vision Therapy.

It’s amazing how God plants thoughts in our heart and later, beautiful flowers tendril out from those seeds of truth.

On Tuesday morning, I had an article that was due and had no idea what to write about. It was one of those ‘well is dry’ moments and I didn’t really have enough energy or will power to even come up with a subject.

Something from the hospital kept nudging the corners of my mind. It had to do with watching ones you love, suffer in pain. Didn’t our God let His Son suffer to death for US when he could have stopped it with one word?  It was for a plan beyond our wildest dreams or imaginations. The same Jesus whose heart burst wide open for us is not going to let His children’s suffering on earth mean nothing. When it doesn’t make sense, and it seems so horribly cruel and unfair, He is hurting with us. He will make everything beautiful…in His time.

That was the essence of the article I wrote on Tuesday morning. i think I needed to get it out in words so I could handle the evening better.

About twelve hours later, Kierra started wretching and gagging. She has nothing in her stomach anymore since her new Jtube, so she didn’t get much up. 15 minutes later, her color was horrible. We honestly weren’t sure if she would make it. Her stats were good, but she was gasping for breathe.   I grabbed her oxygen and slipped it on just to try to help her breath better since it seemed she couldn’t get enough air into her lungs. She jerked and screamed in pain at intervals and acted like I had never seen her act in my life.

I threw open the door to the night to give her fresh air. The moist darkness slammed me in the face and I had a crazy sensation of danger curling through the fog that lay like a smothering, eerie blanket around the house. I wanted to slam that door shut again, but common sense quickly took over and Steve stood, strong and tall with Kierra in his arms, facing the moist curling tendrils of the night.

We tried everything we could think of, even giving her a relaxant and still she struggled to breathe. Steve sat on the couch and held her while I played Jesus Loves Me over and over on the harp.Slowly she calmed down and began taking easier breaths. Her rigid jerks relaxed, muscle by muscle until she was still, and fell asleep.

I could have kissed that harp.

And my strong husband . And my sweetly sleeping daughter. And my brave Kobe who nicely went about his quiet business and acted like this happened every night.

It took Kierra hours for her color to return. We suspect she refluxed and couldn’t breath past either her reflux or a pocket of air lodged in her airways.

Since then, she has been refluxing HORRIBLY. The nurse and I put our heads together and discovered she has not been getting her reflux medication put into her belly like she should have. Instead, it’s been going into her intestinal tube, totally bypassing her belly. No wonder her belly is such a mess.

So we don’t go far from her side right now. She is so miserable, wretching and bringing up stomach acid, since there is nothing in her stomach. Yesterday, Christine ran to the pharmacy to fill a new prescription that helps with wrenching and abdominal cramps. I think it helped some, but it feels like she has lost alot of ground on her stomach refuxing issues. She is passing old blood again and even brought up a tiny bit of new blood.

Hopefully, we can get it under control here at home! She is such a brave little trupper, gagging one minute, and sweetly smiling at us the next. I think I could take some lessons from her accepting sweet spirit!

Once again…that motto i saw in the drug store

Life does not have to be perfect to be WONDERFUL!

Enjoy the wonder in today.

 

 

 

 

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Going Home? Just maybe!

Today the Doctor stopped by and thought Kierra was doing so well that she could (maybe) be discharged tonight if everything goes well. God answered our prayers and she is doing very well on the gradual increase in her formula. It is so exciting to see her numbers rise on her feeding pump and go down on her IV fluids!!

Her tube sight developed some pretty major redness today, so we are hoping that is not infected!

The Doctors are being super nice about letting us go home and finish weaning her back to full strength formula at home. As long as she is getting the proper volume and tolerating it OK, the full strength shouldn’t be too much of a problem.

My brother, Joe and his wife came down for the day today. They stayed with Kierra for a few hours while Steve and I got out together. Kobe was with us too, so it was a wonderful day! I hadn’t seen him in almost a week. It was wonderful to hear him talk and laugh again. He almost cried when he realized he couldn’t come up on the floor to see Kierra. Children under 10 are not permitted to visit the rooms right now through the flu season. I just can’t WAIT until him and Kierra can see eachother again! He almost wouldn’t even hug me at first, because he wanted to see her so badly.

Dear child.

We are SO EXCITED about how well she is doing and thank you all for your prayers and encouragement!

Hoping to be heading home in a few hours!!!….(maybe 🙂 )

 

 

 

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Slow Progress Is Still Progress

I’ve tried writing this about 5 times and nothing comes out right, so I’ll quit trying to sound correct or proper or what I think people want to hear and we’ll see how it flows 🙂

The good news is that Kierra is tolerating 19 ml of very watered down formula an hour. Our goal is 47ml. She is ‘just on the verge’ of not being OK with it, but we keep creeping along.

She was in awful pain last night and I dreaded the night with all my heart. Partly because the night before had been really tough and because I was exhausted and I didn’t feel like dealing with this any more and I didn’t want to NOT deal with this, because the unknown and the oppiste of dealing with it looked too scary.

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 I probably need to stop and process my feelings and emotions, but right now I don’t feel like doing that right now either. (i need to go calm Kierra, be back soon…or maybe not 🙂

So here’s the deal. If Kierra cannot tolerate enough of any kind of formula, we are headed for some hard desicions. The only other option for her sustance is a more permanent line that would sustain her with IV fluids. That would be a huge step because when we do that, we are entering another whole level of health care. And we are not at all sure we want to put her through all that.

 It’s more then just what we want for her in life. It’s what BEST for her.

That’s a hard choice for any parent to make and like our Doctor has told us in the past, “there is no right or wrong choice here.”

We need to do what we feel is the best for her and us. We need to get out of our own heads and into hers. And pray.

Yeah. That prayer thing is pretty hard to do sometimes. I think maybe I would call it more Breathing. Like being linked to God with our breathes…so close that He knows what we’re thinking and feeling.

I must be rather thick sckulled because I didn’t even really consider that this Jtube thingy wouldn’t work for Kierra until yesterday.

  Then I suddenly realized how much is riding on this whole ‘tolerating her formula’ thing.

 I honestly just kinda pushed it to the back of my mind. Because I don’t really want to spend time worrying and obsessing over it when it hasn’t even come to that point yet. It’s just that I don’t want to be caught off guard either.

 Right now, we are headed in the right direction…and we will pray hard that God would keep moving her digestive system along and we could get out of here with a happy little girl in a few days. Will you join us?

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Yesterday a Kate and Katrina came to see us and we drank tea and talked and Katrina played harp music and Kate read me a wonderful portion from One Thousand Gifts. It was about the Israelites and how God sent them  manna for so many years and the meaning of manna is literally what is this? Sometimes the things in life are literally a big question of What Is This? that You are doing God? Right now, we choose to trust the heart of God. Because we know of no other larger, more compassonite, more perfectly wonderfully, right heart to trust.

Kate and Katrina didn’t even freak out when Kierra kicked her IV apart and there was blood dripping all over and the nurses came scurrying in and we held her firmly as they salvaged the IV ( PTL! a miracle in itself!) and retaped and swaddled her foot again. 🙂

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Then today, Sadie and Brenda came with cheer and love and we bathed Kierra and went out to lunch in Brenda’s cute diesel Jetta 🙂 Thanks for taking pictures, Sadie! They are so special to me!

My parents were here so they stayed with Kierra while I took a nap at RM House. They drove over 4 hours just to see us and give me a break. Thanks Mom and Dad!!! It meant so much!!!!

Now tomorrow night, I’m hoping to see my Better Half 🙂 and my little two year old that I miss frightfully.Phone converstaion just doesn’t always ‘cut it’ anymore.

Tranquil rest to you all…snuggle deep in God’s Love and Peace!