So off we go.

Another trip to Deleware in the works. I need a ‘sauvey’ smart believable tongue today. LOL!!

Kierra has been having so many Gtube issues lately. There’s also the excessive fluid pooling around her eyes and in her belly and hands and thighs. The low grade fevers that come and go. The vomiting and gagging over meds or just because, the lower heartrate and oxygen levels. The extremely high respirations that creep down low when she sleeps. She has been swinging all over the charts and every time we make a grab for the solid evidence of what’s wrong, she spins off into another directions and our theories  go crazy in the cross current.

I had her to the Dr. on friday, called the Dr and the pharmecy and the Dr and the pharmecy ditto ditto ditto all day Monday trying to get a prescription tracked down. On Tuesday, we rested and did laundry and baked Christmas cookies that are truly kid’s works of art. Who said a 2 and 3 yr old and a distracted mommy can make darling gingerbread men ? They appear more like delicious unrecognizable sprinkle infested puddles and smudges of moist cookie.

Yesterday, we were very concerned. Kierra had an unnatural pallor touching her face, and we couldn’t get the proper size tube in her belly when we went to change it. so we put a smaller old one in.)

Then, i got a call that if i could get her to the clinic in an hour, they could fit her into their schedule. Now my kiddos were both in bed, and i myself in my favorite pjs with wild hair.

I tore around madly, throwing stuff in the general direction of the door. Thank God for kind neighbors (who hand you coffee in a travel mug and homemade cookies) and a duplex. I opened the side door and sent Kobe and a oatmeal pack straight through. Then we had a cold frozen van, frozen rutted slush to push Kierra’s chair across, all her meds to grab since i didn’t know when i would be home, and all the usuals.

The rest of the day was not as wild but my patience was totally maxed out. We decided to take her to Deleware to be seen by a GI Dr. for possible belly infection. I came home to pack up again, and waited and waited and waited for a call to let us know when and where to go. It turned out that GI wanted us to take her to see the surgeon that put the tube in. By then, it was way too late to get in yet that day, so we made an appointment for today and started her on an antibiotic in case there is an infection.

The strange thing is, she is happy, and laughing and talking. And her huge belly from yesterday is soft.  We would be thrilled if God healed her. I am feeling stressed though, because it seems she flip flops so much and is well for several hours and then really bad for several hours. I have this fear that she’ll be on her best up swing when the Dr. sees her and he’ll think all my explanations mean nothing, because, ‘the most important thing is how the child presents’. The thing with Kierra is that sometimes things are going on that ARE NOT presentable. She can’t tell you how she feels or where it hurts or that she’s having difficulty breathing. And neither can a Dr. really know that she’s acting ‘off’ when he hasn’t seen her in over a year.

So pray that i would not worry. That I could speak clearly and accurately and that he would LISTEN and believe me and if something is wrong, that God would show him what it is 🙂

Now, on a happier note.. i think I will go wrap some Christmas gifts while Kobe occupies himself with a waffle 🙂

Life Is Good.

That slogan has made me cringe and inhabited my mind , dredging up murky questions.

It seems so blithe and innocent. Like a perfectly loved summer child.

But where is the goodness of life in pain? In terminal illness? In lethal disorder?

Life is good for my just turned two year old. He blows out candles and runs into Daddy’s arms and eats cookies. He laughs and crys and tells me where his ouchies are.  He insists on his monkey pajamas and begs for juice. He whirls around corners on his trike and writes long pages of tiny squiggles. He talks and laughs and feeds the rabbit.

But how can life be good for the single Mom struggling with all her energy and power to make ends meet?  Or the single Dad juggling work and house and kids? For the children that miss their parents dreadfully? For the little ones, starving, or beaten; abused, or spoiled rotten? For the soul that has been crushed again and has no strength to get up? For the hospital rooms full of sick beds and the countless homes facing life and death.

And how in the WORLD can  people walk confidently around in the streets with ‘Life Is Good’ em-blazed on their t shirts? Do they actually have such a happy carefree life that they can honestly say that Life Is Good?

Or  could it be that they have  chosen to rise above circumstances and embrace hope and bear evidence of a Good Life  among the ruins of our universe?

Hundreds of years ago, a man named Paul was stoned by religious folks, dragged outside the city, and left for dead.  Disciples of God gathered around him, and he stood up and walked back into that same city. The next day, he left with a friend to share the Good news of salvation, and the power of God to more folks in other cities.

I can’t imagine that ‘Life Is Good’ really described Paul’s life. What is good about being hated? Knocked unconscious with  brutal rocks? Dragged out of a city that God led you to? Being ‘rewarded’ for following God with excruciating pain? Making enemies when you only wanted to share God’s love?

And yet, when Paul got home , he was rejoicing in everything God had accomplished through them, fully believing with joyful trust that He is Christ, the Messiah…the reason that

LIFE IS GOOD.

Because Life is a gift from God.

And God is Good.

Circumstances in life can be really crummy and they really truly stink and sometimes you really, really don’t want to go through the effort it takes to keep breathing and the discomfort and pain and fear that are inevitable. Life sometimes falls apart and shakes the very roots of your soul with it’s terrifying tremors. Voices of doubt declare that you’re too messed up and a total failure.

And the very sight of a ‘Life Is Good’ slogan makes you shake your fist.

Stop a minute and believe the ONE thing will always be true.

NOTHING!  

NOTHING!

will change it.

God is Good.

because of Him,

Life really IS Good!

Praying you would have the courage to choose the GOOD LIFE today.

Yesterday morning when the nurse left at 6AM she reported that Kierra was breathing really rapidly. I wasn’t too worried since she does alot of shallow belly breathing regularly.
I had appointments every day last week with her except Monday and Saturday. I had even taken her to The Clinic of Friday because she was doing weird stuff all week. Like vomiting when the Dr.says it’s impossible since her nissan /funda surgery that was still intact a few weeks ago. She had no fever and no other signs of a virus really.
So I was holding her Sunday morning, counting her respiratory, getting her breathing treatments ready when she suddenly started breathing very rapidly. She had been doing well on one lifer of oxygen. Now she was struggling to hold her own at 3 liters. Her machine maxes out at 3. I hollared for Steve and watched as her heartrate dropped into the 70 s and 80s. Her oxygen was hanging low in the same numbers. 90 is barely acceptable for oxygen numbers, and she wasn’t hitting anything much higher then that at all. We gave her a breathing treatment, and called the on call Dr at the Clinic. She advised us to take her to the ER in Deleware if she continued to struggle.
I called Linda Fisher to see if we could drop Kobe off on our way.
Here’s the amazing thing. I had barely got off the phone with her when Kierra started stabalizing. Linda had promised to pray, and somehow I knew she would immediately.
We threw things together, dropped Kobe off, and headed out. Kierra stayed at. 100% oxygen level all the way pretty well. And she was only on 2 liters!
We felt a little weird walking into the ER with her, but were too concerned to just take her home.
I am sure the church and friends and family were praying. Although her chest xrays showed lots of fluid on her lungs, her lab work came back much much better then I ever dreamed it would! I was so thrilled!
Today they did another xray and saw a definant improvement so that’s encouraging!
She is still on a Vapatherm. Which is in my words, glorified oxygen. They don’t know what the cause of her rapid breathing is right now since quite a bit of fluid came off with IV Lasix.
We are hoping and praying she will breath easier and be weaned back to regular oxygen!
I’m exhausted so good night. Thankyou for your prayers! It is such a faith booster for me to know God really does answer positively! And when the answer is No, then He is always there to hold us through it. Because He promised. And God NEVER lies or backs out!

It was a decision that was HARD and agonizing and a long time in coming. This thing of getting a nurse in to care for Kierra at night. 

My husband strongly encouraged it when he realized how exhausted I was. I guess three years of jumping out of bed countless times at night does that to you.

But it isn’t just the jumping out of bed that gets to you. It’s the constant -ear open- mind ready to kick in high,- brain never resting- thing of listening while you sleep. It’s different then listening for Kobe.

It’s the feeling that if I do NOT wake up a whole number of unpleasant- even life threatening things could happen. Like she could get the blanket over her head and suffocate. Or get wrapped up in her tubing and strangle (though I never heard of this happening. lol! but the thought…) she can get stuck in a position she can’t get out of. Or her MicKey could come out and the hole close too fast and surgery would be in the picture. She could stop breathing or even push her oxygen off and labor away until she’s grey in the face.

And these things really have  happened.  So you can imagine how ‘restful’ nights are. And yet, i always am amazed how you still learn to sleep through your fears and trust that angels will hover round your child and wake you if your needed. 

Having said that wonderful thought, it still doesn’t take away the responsibility that goes hand in hand with us every day. Everywhere. 

So after talking to several Moms who have in home nursing, and after realizing that i can’t handle life all by myself sometimes. And after realizing that I’m being an impatient, snappish Momma Bear to my Wee Ones and Pappa Bear way too often, we decided it really was time to get some help. 

I still struggled with that thing of not being capable and energetic enough to take care of my own daughter. That thing of knowing that other wonderful Mommys do more then I and survive. That thing of meeting Mommy nurses in the hospital that work night shift so they can be with their kiddos during the day and wondering when they actually sleep!! And thinking i am just ‘not enough’.

But in the end, we decided it was for all our health and well being and quality of life 🙂 that we NEEDED a nurse.( ouch. that kinda hurts to say it .) But. YES! I got it said! 🙂

So yesterday was our first meeting with the agency. The folks were so kind and caring and made me feel like I was making the right choice. It was a long process with tons of information to get down and lots of paperwork! About 4 hours from start to finish. And I was exhausted by the time we were finished. I was signing my home to be opened to ‘strangers’ and my complex daughter to be under their care 8 hours a day. 

Our first nurse came last night. She is a homey, sweet, compassionate lady that Kierra took an immediate liking to. I was so excited about sleeping, i could barely sleep:) Then i lay there, in the dark, and realized I could drift off into peaceful la- la land, turn my brain off, shut my ears, and be waken if i was needed. 

Turns out Kierra slept well too. Except her oxygen levels kept dropping nearly every hour. She is on a moniter at night, which is a great thing, because she will suddenly drop her levels with no warning. Then we need to bump her up to 3 liters of O2 until she ‘catches up’ again. 

We had a very interesting though rather hard Dr. appointment on Tuesday. Kierra has had a low grade fever for about 4 days now, and seems to need increased amounts of O2. 

Good Dr. S. informed me of some new research being done on Yoder Dystonia , ‘fresh off the press’. One of the nation’s top scientists is studying the brain of a child affected with Y.D. He is finding some amazing things and he is barely half way done. The back part of the brain loses brain cells as these children grow and age. They do not reproduce more brain cells. This is the part that controls eye movement, spasms, and learning. This makes total sense to me since the older Kierra gets, the more eye flitting and uncontrolled movement she has! I”m sure they are accurate on the learning part too, although I know I can communicate much better with Kierra now, then I could a year ago!

They also took blood from Kierra and I and sent it to their special ‘Y. D. scientist ‘ in the lab. He has discovered how to break down certain cells in the blood and take them apart back to embryo stage. Then he can put them back together again and is hoping he can understand more about this genetic disorder. The same way with urine…he takes a protein in the urine and breaks it down in hopes of finding the leading cause for kidney failure in these children. The kidneys themselves seem to be the problem more then that the body wears the kidneys out.

So having this new exciting information is helpful, but it doesn’t fix anything yet. Next Friday, we plan to meet with him again, and make an extended care plan for Kierra.  That won’t be a fun meeting. But it is good to face the true facts of life and I think it’s better to KNOW what to expect then just to have a cloudy fear of ‘what ifs’. And although we won’t really know what the future holds, we can hopefully still get a better handle on what to expect and how to help her.

Right now, she is retaining fluid again somewhat. She could defiantly use some heartfelt prayers that it would decrease and she could also breath better. She seems to forget to take deep breaths, which drives the levels of Carbon Dioxide up in her body. That’s not a good thing. 

Thankfully, she has had happy moments through the day and is still moving all over and smiling and she even giggled yesterday!

So although she could go into kidney failure next week, she could also rebound and live for many happy years! That’s our prayer and hope! Meanwhile, we are enjoying the end of summer and celebrating the amazing Gift of life!