Author: Anita Hochstetler

I'm a country girl at heart who loves coffee shops and bookstores, simplicity and the great Big Wonderful World...particularly Northwestern Montana and it's familiar spots and untamed beauty. It is where I fell in love with my husband Stephen. We brought three children into this world in the following years. Stephen is quiet and steady and crazy all in one handsome combo. He’s got an amazing brain and keeps my flights of fancy from blowing us away. Kierra , our Wildflower child, was diagnosed with NCS before she was a year old. It is an extremely rare genetic disorder with no cure. She passed away in January of 2014 at 3 1/2 years old. Kobe joined us 15 months after his sister and is our sensitive, math whiz child. He is kindhearted and loves the finer things of life. He talks about Kierra often and longs to play with her again. Kyrell is our youngest. Our Hope child. He charges through life with a dynamic spirit and lots of smiles. I share my heart here on these pages and pray they will bless souls far and near.

Special Kids

Slow Progress Is Still Progress

January 10, 2014October 31, 2019 Anita Hochstetler5 Comments

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.

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?

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. 🙂

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!

Special Kids

Tube Changed!

January 8, 2014October 31, 2019 Anita HochstetlerLeave a comment

Yeah! Praise the Lord! They had an open slot in the IR today and got Kierra’s new J/Gtube in. She did very well and didn’t need to be totally ‘put under’ but only sedated. Her IV was leaking, so they got a new one started as well while she was a little more relaxed. Now we are slowly increasing her feeds every 3 hours until we reach our goal of 47 ml per hour. We are at 10 ml right now:) She is sleeping again finally. She was awake all night the last three nights. I think she just wants to go home to her own bed. Thankfully she took a nap today, now tonight she is sleeping again.

The wonderful thing about this cold snap that has everyone shivering is that Steve got to have off work yesterday and today! That made me very happy! I even got to take a long nap this afternoon…bliss!! Personally, the cold cold outdoors felt very invigorating and brain clearing to me on my short walk to the car 🙂 Nope, I did not have to stay out for any long amount of time.

Steve headed home again tonight. Hopefully we can be discharged in a day or two and celebrate being together again. I miss Kobe! 🙂 It’s so much fun to talk to him on the phone now that he’s old enough to respond.

Guess what else? I got my cracked lenses fixed in my glasses yesterday! They have cracked twice now, and I haven’t even worn them much. Kierra likes to reach up and box them with her long arms, but I didn’t think that would be hard enough to crack them. Maybe they are weaker then I thought. This time I got a more shatter resistant lens.

Just a little secret… Lens Crafters was going to charge me $300! for replacement lenses. Vision Works only charged me $90…and did it in a few hours! I was highly impressed! I think they did a super job of getting my eyes focused in them too, since the last lenses made my eyes go weirdo. I can actually wear them without feeling tipsy! I guess it just takes coming to the hospital, having a great husband to watch Kierra,and a Vision Center close by to give me the nudge to get them fixed. LOL! Oh! And I think this vision center did a MUCH better job then Sears where I got my glasses 🙂 So …good things come to those who wait 🙂

Yesterday, a friend texed me the amazing thought that God watched his Son suffer to death and didn’t do anything about it…because He loved us SO MUCH! So don’t think for one moment that God does not hurt with us when our children suffer also.

Last night, a Pastor stopped by on His rounds, and in our conversation, he mentioned the exact same thing! That God really DOES care that we live in a hurting imperfect world. He sent Jesus to this messed up place for US! Isn’t that just the most amazing Love and Grace!

It was a wonderful confirmation that God will walk with us through whatever we face in life.

Thank you all for your prayers! This has been a wonderful day! 🙂

Stay warm.

Special Kids

Quiet Day At Dupont

January 7, 2014November 1, 2019 Anita Hochstetler3 Comments

We had a relaxing quiet day today. Kierra calmed down majorly after her feeds were discontinued and her belly had time to empty and heal. She went from thrashing and crying to laying calmly and resting quietly.

The GI Dr. and kidney Dr. came through on their rounds today and decided it would be best to change her Gtube to a G/Jtube. That will make so her feed can bypass her stomach ,hopefully causing her less pain,discomfort and vomiting. Last night, they tried to start her feeds at a super low rate of 10 ml an hour only to have her vomit after 2 hours, so we know that she cannot tolerate formula in her belly right now. The only other option for hydration is through IV. This tends to make her retain more fluid so the kidney Dr wants to discontinue her IV asap.

We waited all day for a time slot for her procedure to open. Nothing did…they were booked full. Tomorrow is full as well. We are hoping and praying for a cancellation so she can get off her IV fluids and start with her formula feeding again. She will have to be sedated for the Jtube placement since it requires threading the tube down into the intestines. She’s pretty good at rockin and rollin when it comes to someone messing with her belly, so I’m guessing it will take a fairly large amount of sedation.

Today we went for a little walk down to the family room, and hung out in our room. There is alot of RSV etc in the hospital right now, so I wasn’t too sure about taking her out, so I covered her Kid Cart with a blanket. No children under 10 yr. are permitted on the floors right now through the flu season, so it was a nice quiet walk 🙂

She has been awake for most of 48 hours now. This afternoon she opened her eyes and laughed and talked and gave kisses 🙂

I think her gazes toward heaven just melt the heart of her Creator and make the angels sing.

She finally fell asleep tonight and is totally cloncked out. I am so thankful!! I love to see her at rest when she so desperately needs it!

Prayer Requests:

1. That she could have her tube changed tomorrow sooner rather then later 🙂

2. That she would not catch a nasty bug here in the hospital.

3. That all the IV fluids wouldn’t cause her to retain too much fluid.

4. That she could be calm for the tube change and it would go well.

I talked to Kobe today. It was so much fun and he sounded like he was living the good life! 🙂 I’m so thankful he has a good safe place to stay and that he is well cared for and loved while we are here!

Thank you all for your prayers!

Special Kids

Admitted

January 5, 2014November 1, 2019 Anita Hochstetler2 Comments

After Kierra vomited at 4:30 this morning…again and cried uncontrollably and was totally miserable, I emailed our Good Doctor. He so kindly called me on a Saturday and we decided with all Kierras ‘glitches ‘–vomiting old blood, refluxing badly, lower heart rate when sleeping, cold sweets, and generally becoming more miserable, our best choice was to take her to Deleware where a wonderful group of Drs could work together to make her more comfortable.
We packed our bags and cleaned up the house and fueled up with gas and Coke and headed out, dropping Kobe off at his beloved. Merv’s House 🙂
6 Hours of sitting in the ER and now we are settled in our room. Kierra has cried most of the time if she isn’t sleeping. She is finally relaxing after plenty of Valium and giving her belly a break from her feeding. As long as she is on IV, she won’t dehydrate. Her afternoon was very traumatic with abdominal and chest xrays, labs, IV started, urine sample collected,and Kayexalate medication that gave her awful gas and a huge blowout but also brought her potassium levels down nicely.
They want to do an ultrasound on her abdomen to check for any other major blockages or obstruction in her bowels /intestines. Hopefully on Monday we can see the GI. DR.And perhaps get a feeding tube put in that bypasses her sensitive stomach.
Prayers for her comfort! Also that her electrolytes would continue heading in the right direction!
Now I will quickly post this before I get interrupted again! 🙂

Special Kids

Two Little Wildflowers

January 3, 2014November 1, 2019 Anita HochstetlerLeave a comment

Kierra met another little friend today that is diagnosed with the same disorder that she has. Kayla is 2 yr. old, almost three, but she easily held her own beside Kierra 🙂 Her parents traveled from Indiana to do some very informative testing at LGH here in PA. She had just returned from an MRI when we got to the hospital to see her, but she still smiled and wiggled and blinked her eyes coquettishly…just like Kierra 🙂 They even locked their arms together for awhile and lay there happily beside each other, while we parents visited and loved watching them.

There is a marked difference between the two little girlies though. Of the 27 known cases of Yoder Dystonia, this little Miss Kayla has no kidney disease at this point. Not even a trace. Last year, The Clinic Dr.s and scientists met with more Dr.s and scientists that were discovering more children with Yoder Dystonia, but were calling it Hershberger Syndrome instead. They pooled their knowledge together, and discovered that little Miss Kayla had a different mutation to one of her genes then any of the other children did.

To make it all a little easier to understand, good Dr. S. explained that while Kierra and every other YD child has a mutation in genes that affect the kidneys and the brain, Kayla only has a mutation in the gene that affects the brain. These genes are right beside each other in our gene pool, so he described it like shuffling a deck of cards. Sometimes the cards stick together. That’s what happened to all the children except Kayla. The kidney gene and the brain gene both became mutated or ‘stuck together’ and were affected. Kayla’s gene broke off before it reached the ‘kidney mutation point’, so her kidneys look pristine.

Isn’t that just amazing!?!

Now they need to find a child with only the kidneys affected and not the brain! 🙂

So I’m not sure what all this means in finding help for these kids, but it is WAY ahead of where they were a few years ago. Knowledge is power. At least I hope so in this case 🙂

These children’s Cerebellum in their brain deteriorates at a very high rate of speed. Kierra’s may perhaps be at the deterioration stage of an 80 yr. old. An MRI would likely show more, but this is an estimation from other research. Maybe that is why she has trouble sleeping 🙂

They are hoping to have a reunion for all the Yoder Dystonia children this summer sometime. I am very excited about it! They also hope to have more information to share with all the families. Maybe I will discover then if my memory served me well or if I got it wrong in my brain’s computer as i listened to the Doctor’s knowledgeable explanations 🙂

The more medical term for YD is called NCS. This stands for

Nephr (kidney)

Cerebelo (brain)

Syndrome.

That makes more sense to me as well 🙂

So maybe technically we would say that Kayla has Cerebelo Syndrome and Kierra has Nephr Cerebelo Syndrome 🙂 Either way, they were very much alike and very much different. Two lovely little sweetie pies.

On the way home we picked up a bunch of medication refills for Kierra including her upgraded brand of pepcid. She is still having problems with a GI bleed and is still spitting up blood sometimes. We are still waiting on some test results. Poor girl. Her stomach muscles must be getting worse, since she is vomiting 3-4 times a day. Thankfully, it’s not more then a few mouthfuls, but it’s still traumatic and uncomfortable and yuck for her.

We are hoping to change to a different style feeding tube that will bypass her stomach and take her feed straight down to her intestines so she doesn’t have to vomit as much. She is loving her bed and her new Bird and Flower bedding very much these days!

Favorite Products · Special Kids

The BEST Hair Detangler, Crib and Harp Music

December 22, 2013November 1, 2019 Anita Hochstetler3 Comments

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.

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.

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.

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. 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.. 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 🙂

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 ?:)

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:)

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! (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!

Special Kids

To the Doctor

December 19, 2013January 19, 2014 Anita Hochstetler3 Comments

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 🙂

DIY Projects · Kid's Fun

Terra Cotta Christmas Crafting

December 14, 2013January 19, 2014 Anita Hochstetler1 Comment

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!

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.

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.

Perfect for little fingers to play with.

I found one more cute use for the terra pots .

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!

Special Kids

A lesson in Comparison and Special Needs Travel

December 12, 2013January 19, 2014 Anita Hochstetler1 Comment

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.

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 😉

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)

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.

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:)

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.

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?

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 ? 🙂

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.

The fragrance of true love. I am so blessed!

Thoughts On Life

Embracing Montana

December 5, 2013November 1, 2019 Anita Hochstetler2 Comments

We did it!!! We saw Montana again! We 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… And then the beautiful mountains themselves… 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 🙂

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.

i love you, Stephen! ❤

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!

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.

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!