Special Kids

His Mercies

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“When everything falls apart

His love catches me.”

And thank Him! Not everything has fallen apart!

I was feeling a bit ‘on the verge’ today a few times and had to firmly tell myself to be brave and envision all the prayers lifting to heaven for us and think of all the brave folks I have met in life that have faced difficulties with their heads up and hung onto the promise of our Jesus…’I will guide Thee with My eye..”

This morning, Kierra’s blood pressure was still scandalously high. She wasn’t responding well to any medication on the general floor, so she was transferred to PICU. They can treat her more aggressively here and monitor her more closely.

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She actually didn’t look too bad but her numbers were wayyy up there. After trying to put her on a Vapor oxygen and having her get so worked up she nearly choked, they decided to let her breathe room air since she was staying above 90. She had alot of noisy airway breaths that sounded bad more then actually being harmful.

Around 9:30, OR came over and wheeled her away for her PIC line and scope. I got the kind nurse to take a picture of us before she was traumatized and sedated.

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I did some laundry, made phone calls, and visited the cafeteria while she was in the OR. It was a lovely part of the day outside so I took advantage of the sunshine and water fountain in the courtyard.Finally finally, she was done, and I hurried back to the room to my little sweet heart.

Her airways were sounding a little tight so they inserted a tube like thingy down one nostril and put a collar round her neck to open them wider. It wasn’t pretty, but it did the job.

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She started gagging at one time and her oxygen levels started dropping and the nurse grabbed the oxygen and  bag to help her breath and my heart started shattering with fear. Thank God, she came around on her own after a few minutes. I was pretty shaken and kept a hawks eye on her and the monitors.

Her test results have been fairly good so far. No pneumonia at this point and her heart looked good and she DOES NOT have any sign of ulcers. That was a huge surprise, and while I’m glad she doesn’t, I also am wondering why she has had such discomfort and a little bleeding. The bleeding could be a slight irritation from meds or a virus. I hope that is the case.

She is resting well now, after her little bed bath.

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The plan for her now is to try to get her blood pressure lower and stable. I’m so thankful she has a PIC line which makes labs SO MUCH EASIER!!!!!

We are still in ICU but after she is more stabilized in her b.p. we will most likely be moved to the general floor. It’s nice to have our own room!And generally a quieter night, then upstairs. The kitchen and coffee pot are just across the hallway, so I’m set up 🙂 Except if my little girly sleeps, I think i will stretch out as well…

My whole day was blessed by the kind friend who took food to our house! And last night, another thoughtful lady sent supper with Steve. We are so blessed!

Thanks for all your prayers! Please keep praying.

Blessings!

Special Kids

Hello Hospital

Sitting in the dark hospital room, listening to Kierra breathe, Enya playing softly, bubbling oxygen water and the night squeaks outside in the corridor.
this was not how we planned our weekend at all! Our good friends, Kenton andMeghen from MT. planned to be at our house a few days surrounding a wedding in Mifflinburg. I was looking forward to this for months! And we had shopping and coffee and a family photo shoot planned since Meghen so kindly offered to use her fun wonderful talent on our little family.
Amazing. The plans God has. And how totally different they are from our best expectations!
Kentons got delayed flying and didnt arrive untill about 24 HR LATER!
and we ended our day in the hospital with Kierra.
She’s still got us puzzled since her blood pressure is rediculously high even on meds. Last night they planned to move her to PICU but it started coming down again. She has good color and is still happy and irritable. By spells, which is typical.
Yesterday they did an ultrasound on her kidneys and an Echo on her heart. Now today they plan to do a belly scope to try to find the cause of the blood we’ve been catching glimpses of. She will have to be put to sleep so pray that all goes well! And that her blood pressure would go down and that the cause of it being high could be found!
Thankyou all! We feel God with us!

Special Kids

My Lesson on Bath Water

Just when you think things may perhaps be leveling out…the unexpected happens AGAIN!

I ‘never’ let Kobe sit in the tub with Kierra at bath time.  I use our shower stall, and  there is very little extra space for a one year old who LOVES baths and bubbles.

Friday morning, I relented and reassured myself that it would keep him from picking up the shampoo bottle and soap bottle and towel and washcloth and generally leaning over and around and on me and getting in the way , so i let him sit in the back of the shower and even gave a healthy squirt of bubbles to the water when he begged.

I had just gotten Kierra nicely situated and was wetting the washcloth, when to my stupefied horror, i saw her brother with a cup of water moving toward her head and stared as he DUMPED it squarely onto her face!

And it all happened so fast and yet, the images are frozen in slow motion in my mind.

Her little white teeth, bright against her red lips. her tilted back head and closed eyes as she relaxed in warm water.

And then, Kobe’s totally innocent expression as he emptied the cup of water onto that sweet upturned face.  Dear child. He was only trying to wash her hair like he has seen me do so many times.

She choked and sputtered and gagged and i tried to sit her up, but she only slipped and slid and i wanted to pound her back, but she was an eel out of control. Poor poor pumpkin!

I felt like calling the Dr. immediately with my big concern for aspiration, but felt really foolish and told myself that it was most likely not enough water to harm her. Don’t all kids drink bath water sometime in life?

All weekend I watched her closely and couldn’t decide if I was imagining symptoms of aspiration or not.

Today, she had a routine appointment and I was SO thankful! She had a slight fever and was breathing extremely rapidly. Respiratory was around 60 a minute! That was over twice as fast as ‘normal’.  There was a slight crackle in her upper lung. The Dr. suspected it was the beginning of a pneumonia most likely caused by bacteria in the water she aspirated. He said even soapy water could cause this. Now she’s on antibiotic again, and we need to watch her respiratory closely over the next 48 hours.

She is resting well right now, and her respiratory is down to around 40, Praise the Lord!

Lesson learned~ Single child bathing ONLY with Kierra!! 🙂

If you would be so kind to breathe a prayer for her recovery, we would be so obliged!

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P.S. How he LOVES her ! ❤

Special Kids

Of Travel and MicKeys.

We did the thing I didn’t think I would ever do! And was it ever fun 🙂 We bought tickets, checked our passports, made arrangements to leave Kierra with family, and left the country for 7 days! Now maybe this doesn’t sound so amazing, but for us,it really is a miracle!

I don’t know how often i thought we were totally nuts to go and leave Kierra behind. It was one of those things we thought God wanted us to do and we wanted to do and we thought we should do and it worked out to do. So we did it. And I tried to just turn my mind numb to all the things that COULD happen. And guess what? Most of them DIDN’T happen!

A week or two or was it three? 🙂 before we left. Kierra developed stomach ulcers, so we had just gotten her ‘stabilized’ as in not crying and uncomfortable or whimpering nearly every ‘awake’ moment. Her schedule was very rigid since she needed meds every 6 hr on an empty stomach and since it’s hard to get her necessary amount of feeding into her in a 24 hr. period without having to stop to let her stomach ’empty’.

So with an hourly schedule

lots of medication info (she was on at least 10 different meds :()

suction info (for when she chokes)

oxygen info (for when she needs a boost)

what ‘sick’ looks like on her

medical care release form

and medical history forms

not to mention clothes and wipes and pampers and formula boxes and feeding pump and feeding bags and oxygen canulas and tanks and tape and suction machine and a new MicKey Gtube and syringes and hair supplies and lotion and the list didn’t seem to end…

but Jason and Karen got her all loaded and packed away safely in her car seat and Kobe and I waved goodbye and she was off for Maryland and cousin time and I was standing in my house wondering what in the world to do next and trying to think that this really would all be OK.

Believe it or not, I put Kobe down for a nap and crashed myself and woke up feeling more like a person then I had in quite some days.

I gathered our stuff together and packed our bags and we had so little compared to Kierra that i was SURE we were forgetting some drastic thing! Steve came home from work, and we finished packing. Early the next morning, we jetted off!

Tegucigalpa, Honduras.

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Steve’s parents are in their fourth year of mission work in the mountains of Honduras. They plan to return to the States this fall/winter, and were so thankful we could visit them before they closed this chapter in their lives. We hadn’t seen them for about a year and a half, so we had a wonderful time reconnecting and introducing Kobe to them!

A few shots of our days…

Kobe milk milk milkin. He was totally amazed!

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‘visting’ with the neighbor girls

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hiking and piggy back rides with Grandpa 🙂

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Love this little guy 🙂

 

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cooling off at the waterfall

 

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A hillside covered with coffee plants. This is a huge moneymaker for the natives, but it takes LOTS of HARD manual labor.

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The country is gorgeous!! Especially from the back of a truck. It’s when you carry a sick child for miles over these mountain roads that you realize what HARD is! (maybe a little like elk hunting in Montana 😉

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Meanwhile, back home, Kierra was doing great after giving everyone a good scare.

She was very fussy one night, and Karen was holding her. When she went to lay her down again, to her utter horror, she found her feeding tube (MicKey) laying in her crib! She stared in panic at the empty hole in Kierra’s belly. Her nightmare had actually taken a ‘real to life’ , ‘this is happening’ turn! It was midnight and the world was asleep.

To make a long 24 hr  story short 🙂 They went to the nearest good ER which was in West Virginia, since they couldn’t get the new tube in themselves. The Dr. in the Er couldn’t get it in either. Her stomach seemed to be ‘growing shut’ already. Now they had two options. Either put her through another surgery to insert a Gtube or take her to The Children’s Hospital in Deleware which was around 5 hr. away.

So they called us. I have no idea how long or often they tried to get through to us, but eventually, they called the missionary neighbors who came over and rapped on Dad’s window who eventually woke up and rapped on our door until we eventually woke up and tried to shake the cobwebs from our brains. With the time zones between here and there, we had just drifted into our first sound sleep. Karen stood in the waiting room in the ER and laughed herself silly to hear me trying to wake Steve and explain what was happening 🙂 He is a WONDERFUl sleeper. I usually envy his conked out way of shutting down!

We voted for them to go to Deleware since we trusted the Dr.s very well there, and in case of a prolonged hospital stay, it would only be an hr. drive  from  our house instead of 6 hr.

So they were released from one Er and started out to the next one. My parents met them in MD and drove them to Deleware. Dad had fun flashing his four ways and cruising along beside a police car for a while. They made the drive in an hour less then usual and wheeled into the ER at around 8AM. Kierra thought it a great adventure to be out and about in her carseat in the middle of the night. She cooed and laughed and had no idea of the stress everyone else was in.

The Dr. at Dupont was SUPER! I think God had him there for a reason! He worked gently and efficiently and got a tiny catheter into her belly. Every half hour, he inserted a slightly larger one until he had her all the way up to her regular size!

Now don’t you call that a God Thing!!  Just a little discomfort and lots of stress for her caregivers…but God came through…just like always 🙂 And this time, there was NO Surgery!

I was one relieved Mama! I was ready to pack my bags and fly back on the next flight out when i heard the word Surgery 🙂

We totally enjoyed the rest of our time and I think Kierra did too.  It did me a world of good to have a change of scenery and pace of life. To see a Big Beautiful World out there that is full of God and hurting folks that need His Love!

Kobe loved flying! The clouds looked like ‘bubbles’ to him from the plane window 🙂

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We had a dead van battery when we landed in BWI at midnight:( Kobe slept most of the time as we waited for the jumper guy to come by. He was VERY tired of traveling though! 🙂

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Can’t you  tired gritty ‘can’t open my eyes’ ‘middle of the night’ ‘let me alone’ feeling!

Were we ever THRILLED to get home and snuggle her again! Oh how I LOVE her!!!

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meds and all 🙂

 

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coming up next….just a bunch of brightness for those who love color!

 

 

Special Kids

Oh No! Ulcer Issues :(

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Kierra has been so uncomfortable this week. She sobs and cries and writhes. It got so bad, she wouldn’t sleep in her crib anymore. She would toss and flail until she got stuck in the crib slats, or scooted to the bottom of her crib and got tangled.  So we resorted to the Big Daddy Recliner 🙂 She loves it so much, I think we will need to get her a small one all for herself!

 

(Any suggestions on what kind to get? 🙂

Nothing seemed to help her and I was getting VERY concerned! Then on Thursday, she gagged and I was even more concerned  to see brown mucus! Another call to the Dr. got me in to have her checked out on Friday. Sure enough, she had blood in her little belly, which is likely caused by an ulcer.

No wonder she was so uncomfortable! We made up a plan for her feeding, put her on a new medication, Carafate, to coat her intestines and hopefully help with the discomfort! Of course they took ran labs also, to check for infections and other med levels.

So now, we are trying to balance getting all her feeding into her that she needs in 24 hrs, and giving her the Carafate on an empty stomach, and a few hours apart from her reflux meds. Amazing how complicated something so simple like feeding can get!

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I made up a chart of times and meds and feedings so Steve and I wouldn’t get confused. (Thank God, he has a three day weekend this week!)

Today she is doing quite a bit better, although she still had a low fever.

We were planning to leave for Honduras in two weeks to visit Steve’s parents. We haven’t seen them in over a year, and it’s high time to get Kobe acquainted with them 🙂

The Dr. put her on this regimen for two weeks and says we will see how she’s doing by then, to decide what to do next…

Have any of you experienced stomach ulers? I have no idea what kind of pain she is feeling and how to comfort her…besides loving her up!

Please join us in praying for her healing!

Wishing you all a blessed Sunday!

 

Special Kids

I wonder…(little thoughts on Healing)

Wherever He went…in villages and cities and out on the farms…they laid the sick in the market plazas and streets…and all who touched..the fringe of His robe , were HEALED!…(LUKE)

Amazing. Think of the one person (or two or three or more!) in life that you long with all your heart to be healed…and imagine them, reaching out and just one touch…

Imagine!

No more pain! No more weariness.

Joy must have throbbed up and down that line of common folks who were given a whole new life!

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I imagine bringing my little Kierra to Him in my arms.

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Placing her in His. And watching in breathless awe as she picks up her head, looks into His eyes, smiles, and throws her arms around Him in a hug.

I imagine her in my arms, whispering sweet little girl words,

Laughing.

Running.

Eating sweet fresh strawberries.

And I wonder why? Why can’t Jesus be here today…an arms length away?

Close enough to touch.

Close enough to HEAL?

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And then, I wonder..if Jesus really were here…and would gently take Kierra and cradle her close and would ask me if I would let her stay with Him…

He would never let anything bad happen to her.

She would be totally safe,

unbelievably happy.

Completely healed.

How could I ever say ” No?”

 

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So perhaps…that is what death is…

Not so much death …as

Healing

and Life

and everlasting JOY…

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Special Kids

Gaze. Up.

 

 

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She sleeps so peacefully in her crib…her body relaxed and still. drinking in the beauty of SLEEP!

Then her brother comes full throttle at her with his aggressive loving hugs, and she smiles and coos and tries to wiggle away.

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The sun shines so gently through the window, turning her hair golden and kissing her gently.

 

 

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her gaze to Heaven melts God’s heart…..

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and i wonder if i gaze with such abandonment and trust into His face as well.

The answer is…Not nearly all the time! i get too confused with all the distractions around me, and am ashamed to lift my poor human head to my Creator and Friend…

It’s then that his unconditional Love and Grace reaches out so wholly and covers me. And gives me reason to Hope again. And open my pathetic hand bag of  failures and fears.  insecurities and broken pieces…and let Him give Hope and Joy…..

and LAUGHTER!

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(that’s what he longs for us…Joyful  Complete   Trust)

 

Then I can get back to being a mommy again 🙂

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A preschool Sunday School class sent kierra some money from their offerings. Among other things, we got her some glitter glue sticks and that nice soft blanket in these pictures. Her baby blankets are getting pretty insufficient.

She loved making cards and drawing pictures! her grin was so purely thrilled when i showed her the finished product and told her what a good job she did.

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dare to look into the face of God today…Smile…and feel His love!

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Special Kids

Hello January

Our Wild flower child….

Just as the subtle fragrance

and the strong vibrance

of the wildflower..

reaching for the sun,

waiting for the rain.

So you entered our lives.

face turned upward,

lovely. delicate.

but feisty against all odds.

shedding your gentle

life altering fragrance over our hearts.

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Hello Friends…Since Xanga and I seemed to be clashing more often then was necessary  I decided to try a new blog space….So we hope for the best. (Which would be that i would be smart enough to master WordPress. LOL!)

January came with a sigh of relief to me! I was tired of last year 🙂 and all the changes it brought us.

Then on new Years Day, I was afraid of 2013. It looked like a dreadful monster, waiting to pounce, wanting to wreak havoc in my life. What an AWFUL way to start a year!

After some conversations with my long suffering husband, some honest chats with God, and ..tears, I came to a sense of Peace.

God is already in our tomorrow.  Just as when we expect guests, we prepare for them, so God is preparing for us. When we get there, we will have EVERYTHING we need!

Kierra had pnemonia in November of last year. She recovered, except for needing oxygen around the clock. That isn’t a problem, but her little face does get sore from the tubing, especially since she rubs it in frustration. We have taped it on, which seems to help, but then her cheeks get tape sores. She’s doing well with it right now, which we are so thankful for!

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Two weeks ago, I got a very bad virus from Kobe 🙂 Awful aches and a dead head weight in my sinuses. Kierra seemed to catch at least a touch of it. I had her to the Dr. because of a fever, and breathing very rapidly and hard. They suspected pneumonia again, so we got her started on antibiotic, and turned up her O2. She slept most of this week, believe it or not.

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I love when she can relax and not fuss, but sleeping so much isn’t too healthy either. She is retaining fluid again from her kidneys not functioning properly. Any virus that attacks her body also seems to make her kidneys a little more sluggish for awhile.

Her lab work on Friday did not show any critical levels, although she still seems to be extra puffy and not losing weight the way I was hoping with her raised levels of Lasix. Pray that she could improve and be able to open her eyes, enjoy life, and show us her lovely smile again.

The past two months have shown an amazing change in her! her personality is slowly emerging and we have so much fun hearing her ‘talk’ to us. She smiles and coos and acts so grownup.

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She loved her cousin’s visits when we were in TN over Christmas. it was such a gift from God to have her healthy enough to travel. She did better then i ever expected!

Kobe loves playing with her. he tries to imitate the therapists and stick toys in her mouth. He tries to take her temperature and play peekaboo and gives her kisses. She loves the attention when she’s feeling well.

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Kobe got to make his first snowman recently. he was so amazed to play in the snow and cried brokenheartedly when he had to come in.

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and one last shot….just to remind us that our God who is so much bigger and stronger then any circumstance has us cradled safely in His arms…

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