The BEST Hair Detangler, Crib and Harp Music

You know how you search and search for the perfect hair care product and nothing seems to live up to it’s promises… Well, I have poured over hair detangler bottles at intervals for months. In stores, and the internet. Not to mention getting advice from a hair stylist, a nurse, and Mommy friends. Some of the products worked (kinda) but nothing was the ‘miracle cure’ like I was hoping. This tangled mess to deal with every morning, soon becomes one of the worst parts of the day.

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She couldn’t hold still long enough for a very clear picture, but I think you get the idea. I have tried trimming them, washing them every day, putting them up in a bobby tail at night, pony tail or braiding them…We just can’t quite seem to be able to find a way to tame those frizzes with Kierra’s signature moves.  1. rythmic head movement 2. either sitting or laying most of the day  AND 3. sweating  on the back of her head.

Then I was introduced to this. December 2013 074

I had my doubts. It isn’t just the cheapest product either. 2.26 fl. oz. for around $15.00 at the local stores. It was worth a shot, and a nursing friend told me it works wonders. Believe me. It DOES!! It took a few treatments, but now Kierra’s hair are much more manageable. I love it because you can use it on wet or dry hair, and it doesn’t cause breakage or hair loss like some other products I have tried.  December 2013 077

Isn’t that amazing? And no, I did NOT wash her hair 🙂 You only need a bit on your finger tips to work into the hair. After a few days of applying this stuff, the hair turns much more polished and silkier. Tangles slide out. December 2013 022 I’ll take fly away hair any day over knotted tangles! 🙂 Several people have asked me where they can purchase this so I have included a link to Amazon which is the cheapest place i have found to get it. Biosilk Silk Therapy Serum

Now here’s one more little (or BIG) ‘miracle’. We got a new crib for Kierra. Her regular crib was not working. She would get tangled in the slats or bang herself black and blue on the side rails even if we tried to keep it padded. I wasn’t sure about getting a ‘handicapped bed’ for my sweet little three year old. Especially if it LOOKED like a hospital bed. Finally, we were desperate enough that we just needed something..ugly or not… that would help her sleep more comfortably. What she really needed was an adjustable mattress since she needs to be elevated when she sleeps and she is most comfy with a roll beneath her knees as well. We would adjust her countless times at night trying to get her comfortable. Our nursing agency helped us out tremendously with this crib issue and here’s what came in our door..Christmas decor 026 It’s big and she looks like a little peanut in it 🙂 But that’s just great. Because now i can crawl in beside her and there’s plenty of room for growing and pillows and teddys and brothers 🙂

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She LOVES it! And that makes everyone happy! And guess what? It’s not ugly 🙂 The Seating and Mobility Company that makes them  does a great job at creating a lovely piece of furniture. We could even chose the color and the wood! It is also padded and the whole bed raises and lowers, the head and feet are adjustable, and the mattress is a great quality. What more could you ask for in  a deluxe bed for a pretty little Sleeping Beauty ?:)

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I just have to tell you about One more thing she loves…Harp Music. I nearly cried when kind friends loaned us a harp. I had been dreaming and longing to try playing a harp for her, since she loves classical music. I didn’t really know if it would ever happen and was too preoccupied to pursue it. Then a friend arranged it all for me and another friend loaned the harp. I wish they could see how much Kierra likes it! (even with my inexperienced fingers:)

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It put her to sleep 🙂 I am so excited about this!!!!

It’s the little things in life we ‘chance upon’ that help calm Kierra that makes this whole journey so adventurous. Yep, I’ve got the moments I’m ready to pull hair and crawl under the bed and refuse to come out . (like when i was 3yr. old and a day at the zoo was canceled) 🙂  But then she smiles and Kobe laughs and Steve comes home, and God is good, and friends are kind. And life will be OK!December 2013 033#2.jpg (by the way, Kobe insisted on wearing Kierra’s pjs 🙂 and in case you are interested in Kierra’s ‘language…this ‘snuggly face’ is how she gives kisses and ‘love yous’ 🙂

Thankyou all for your prayers for Kierra. She is losing fluid from her body, which is great, but she also is running a fever and has major bowel issues the last few days, so we are hoping she isn’t dehydrated and that things will clear up soon. Hopefully, if she is feeling well enough on Christmas day, we can drive down to Maryland and be with my family!

Praise God for His gift…Immanuel… God with us! Isn’t that the greatest gift EVER!


To the Doctor

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 🙂


Terra Cotta Christmas Crafting

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The Christmas countdown has begun.

I am having a very hard time getting into the Christmas spirit this year. This makes me sad. Maybe all these weird confusing swirling emotions that I can’t really place my finger on  will gradually settle to rest like the ending of the blizzard winds.  If I keep hoping and looking for cheer and gladness; if I keep believing;  the gift of our Saviour’s  love WILL grace my life.

I want to enjoy the moment and live with happiness in my heart and a clear view of God’s blessing in our  life.

We don’t have a nativity scene and I really wanted one to tell my kids the Christmas Story. Lucky for me, Pintrest was just a few clicks away. Easier then a bundle up and shopping trip. I bet it’s quite a bit cheaper too 🙂

I had chanced upon a whole box of terra cotta pots one summer in MT at a yard sale and bought them with happy thoughts of painting them into adorable creations. Now I had the perfect plan for them!

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A cardboard box, (one of many of Kierra’s empty formula boxes:) scraps of fabric, crafter’s paint, extra Christmas ornaments, and of course the glue and bits of string and ribbon.

My glue gave me awful issues. I ran out of hot glue immediately. So I used a bit of crazy glue (and still have remains on my finger 🙂 then I switched to elmer’s glue.  I  painted it in a thin layer with a paint brush since I really, really wanted this thing to hold together! lol

Joseph got a blue coat, Mary a yellow coat, and baby Jesus a kingly purple coat.

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I used a cotton ball for the baby’s head 🙂 We bundled them up warmly, and added white angels with musical fabric and ribbons for halos. Then we made them a little camo cave, and added dry beans for a walkway and a ‘fireplace’ 🙂 We’ll see how long it goes until Kobe has all of them picked off. I painted a path of glue on the fabric to make the beans stick. They are just a bit too tempting for him to peel off and feed to the ‘horsh’ and the ‘baa baa’ 🙂

So here’s our little table top nativity scene.

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Perfect for little fingers to play with.

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I found one more cute use for the terra pots .

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They add some wonderful color to our house! I used a long wooden skewer to stack the ornaments on. The skewers had a pine cone on one end from a previous life,  which actually made it easier for me. I have seen this done with knitting needles as well, but since I don’t have the slightest clue how to knit, there was none floating around my stash of hoarded odd things.

I think I need to go mix up a batch of Christmas Sugar cookies since our ‘all -day- waited -for -snow’ has began to fall.

Yesterday, I had Kierra to the doctor with a few minor concerns. He thought she may have a pneumonia type infection beginning and also noticed she had  considerably more  fluid retention then a few weeks ago, so we plan to stay snug and warm at  home and hope the medication and our loving Father brings relief for her. Thankfully, she doesn’t feel bad today.

Stay warm and blessed this weekend!

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A lesson in Comparison and Special Needs Travel

I used to really wonder which child would be more work. Kierra, who can do nothing for herself so needs constant supervision although she is stationary.

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Or Kobe, who whirls through the house and leaves toys flung far and wide  and opens hot oven doors because he just can’t WAIT for his beloved favorite cake.

I woke to the conclusion that as with all other things in life, it is foolish to compare. Each child stands alone in ones own unique personality. Forget the thoughts of ‘he does this, so why can’t she do this?’ or ‘if he would only be tempered a little more like her…’ My kids are each their own very unique personalities, just as my husband and I have our own unique makeup.

I don’t think God meant to make carbon copies. Even in families.  I want to fling my arms and heart wide open and embrace the differences of those around me. Take joy in the brightness and accept the shadows that come with all relationships. ( really, even newborns bring those shadowy 2 AM feedings with them)

When we packed for our 11 day trip to Montana, I knew there would be alot of ‘stuff’.  Traveling with a special needs child literally means moving mountains 🙂 Honestly. I remember staring in nearly rude shock when my In Laws and their two little girls came to visit for a weekend. Each had a small enough suitcase that they didn’t have to check even ONE bag through their flights.

I always realize the huge difference between my kids when we pack up to travel. Kobe needs all the regular little boy things. Changes of clothing, pull ups, coat and mittens and boots, a few toys, a teddy bear, and his wonderful snacks along with his favorite ‘bo bo’ cup.

I finally made a check list of Kierra’s things. The hard part is remembering to stick everything in again that you pulled out of the already packed van because you forgot you would need it one more time 🙂

So if you ever wondered why going away is such a huge chore for folks with special needs…here’s a peek. This is our baggage for one night at a hotel room on our trip. Can you imagine what all else is still in the van 😉

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Staying home looks pretty attractive sometimes:) but then again, getting out and enjoying a change of pace and scenery is nearly always worth it.

It’s not just her clunky oxygen machine that needs to be hauled around, it’s making sure all the back up tanks are full for the travel time. It’s thirty three cans of formula (plus the backup cans for emergencies 🙂 and feeding bags and pampers and wipes and chux pads for accidents. It’s power cords and extension cords (because some motels really have the craziest placed insufficient outlets)  and feeding pump, and IV pole and Pulse Oximeter machine and the back up Suction machine. It’s extra nasal canula, and rolls of tape in every available handy spot and the spare miKey tube and  syringes and extensions and drainage sponges. Then there’s the standard clothing and the coat and the socks.  A whole bag of blankets and pillows for  props so she can sleep comfortably. Not to mention the air mattress that works great for night time and is fairly compact. We can’t forget her meds! All 12 bottles ,or is it 14? And  the container for mixing her formula and the empty bottles to store it in. That ever present roll of paper towels that we use right now for choky episodes. Her nebulizer and vials of medication that go with that.

We throw in handfuls of extra EVERYTHING just because we want to be safe. Even a folder of medical records.

So after we have her all loaded, we have had our work out for the day :0)

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Is there room for me ?:)

The not so great thing is that in some situations you have to do the thing you hate to do… Put a two year old in the front passengers seat.

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Kobe thought he was living the good life! hanging out with Daddy, looking out that big front window…he wanted to pretend to be sleeping for this picture, so i humored him:)

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Thankfully, Kierra travels well usually, but on the way home, she was fighting a cold. I feel better being right beside her to help her if she chokes, or sneezes instead of constantly diving back over the seat and hanging upside down for long periods of time. or missing that tiny window of ‘grab the chokey mucus’ altogether.

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So back to this comparing thing again. How does one compare a lively little boy with a cracker crumb cushioned seat and the cutest expressions about ‘mountains’ and ‘big trucks’ and ‘juice please’ and ‘i need to pee’ and bored fussing noises with this?

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Now you see… it’s not really comparable. They are each darling creations of our Creator with their own sweetness and of course their own not so sweet moments! As different as day and night and as alike as two cuddle bugs.By the way, if it’s not comparable for these two sweethearts…why would it be for anyone else on earth ? 🙂

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Embrace those around you today for exactly the way they are. Sweetness. Hard work. Grouchies. Funniness. Thank God that they are alive and you have the privilege of loving them up.

And while I’m on the subject of loving, i need to brag a bit about my husband :0)

Six years of marriage. Two kids. 7 houses. Cross country move. 3+ jobs. Lots of stress. A wife that can be really —-_ 🙂 And he still surprises me and loves me and believes the best in me through the sunshine and shadows.

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The fragrance of true love. I am so blessed!


Embracing Montana

We did it!!! We saw Montana again!Montana 2013 002 Montana 2013 007We breathed in the great big fresh air. Reveled in the open spaces and could scarcely sleep for the sheer beauty and joy of God’s wonderful creation! I didn’t know I missed it THAT much until we drove into South Dakota. We had been through parts of Wyoming,Iowa, Indiana, Illinois,Ohio, West Virginia, Maryland, all the way back to Pennsylvannia. The closer we got to Montana, the more excited I got. And when that blue Big Sky country sign marked the actual official beginning of Montana air, I just had jump out of our van and do a happy dance. Kobe totally didn’t get it, sitting in the van while his mommy and daddy acted like fools. He caught on pretty quickly though, cuz he became a Montana lover in no time and learned the meaning of new words like ‘antelope’ and ‘drive and drive and drive’ and ‘mountains’

The first views that confirmed we were actually west and promised the Rockies were close by…Montana 2013 008  And then the beautiful mountains themselves…Montana 2013 024 Majestic enormous creation of our Creator. He flung so much beauty into this world!

We arrived in Gold Creek on Sunday and spent the next few days with family.We took a drive back into our old favorite haunts. And spent a few hours in our favorite town of Missoula.

This is the county side of our first young love 🙂

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This the fateful hill where i could easily have died in that dreadful moonlit sledding accident. It was the best and worst ride of my life. Barbed wire and toboggans do not mix well. The strong arms that held up at the bottom are still holding me today, though.

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We had a great time with family also. Good food. New babies, Reconnecting. Steve’s parents had been in Honduras for 4 yr. as missionaries. They just returned a few weeks ago. It was wonderful to all be together again!

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Kierra did amazingly well. I’m sure it was all the prayers offered up on her behalf. She needed more oxygen because of the high altitude, and her heart rate was considerably lower. It was such a gift to be able to be all be together and enjoy each other!

We   traveled to Fairfield on Friday, saw a few friends and packed our remaining things.

It seems like a dream that we lived in this house. I still miss it 🙂 It had a newly remodeled kitchen and antique fixtures throughout. Then there is all that emotionally ‘stuff’ that went on in there. Kierra’s sicknesses and Kobe’s first homecoming. Good times with friends and warm crackling fires. Montana 2013 124

We had short sweet time with friends in the 24 hours we were there. Coffee and conversation, a night of rest…and we were headed out.Loaded packed jammed full!

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We even got to stop for a cattle crossing just outside of Great Falls .Montana 2013 141 Montana 2013 142

Goodbye to the West until next time…. I will miss you, wide open spaces…Montana 2013 159

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