Sunday, December 25, 2016

New Beginnings.

My word for 2016, was health.  I started out the year with the determination to improve my health and to work on healthy relationships. I had no idea the journey I was about to take.

I started by working on my health. The last 3 years had taken a huge toll on my health. Starting in February I made some lifestyle changes and lost a good bit of weight. But the more weight I lost the worse  I felt. In October I made the decision to see a holistic Dr for my health. There is a God story behind this one too. A divine appointment in  where  God showed me that he was in this too.
I learned just how much damage, the stress and the way I handle it, had done to my body. Thanks to a whole body health approach I am feeling so much better.

Along with managing my stress, I am working through some complex relationships in my life. I put up some pretty strong boundaries during our tumultous journey through Bubbie's journey. Now that we are strong again and as my health improved, we are working finding a healthy balance in those relationships.  I discovered that is hard work, especially when one is supposed to keep the stress level down.

There has been a lot of healing in the past year. A lot of positive changes. I feel like I am getting the old me back, but maybe stronger and wiser then ever.

As a symbol of the changes in my life, I went to get my hair cut. Strange I know. But I only get my hair done once a year or so, so this is kind of a big deal. Through connections of a friend, I found this hair salon called New Beginnings. There is a long story about this, that involves lost keys, missed appointments but divine appointments that only God could orchestrate. I got my hair cut,  and I was incredibly blessed by people who care. Once again I was blown away by how God works out things. I have been gifted a year's worth of free hair cuts..

God cares about us. He knows the stress I have endured and the damage it has done. He knew the right Holistic Dr for my health, a Dr that worked with my finances to make sure I could get the help I needed. He knew the lifestyle changes I had to make to get healthy. He led me in the direction I needed. He has then gone abundantly above what I could imagine and also blessed me with the hair care that I need. (this is something I would never spend a lot of money on) I am excited to see what God has in 2017 for us!

Now for the lamb story. This is the God given wrap up to my 2017 story.
 It's a long story. But we have trying to get a lamb for Lee. We had a bit of run around. The night before Christmas eve, the farmer stopped by with a weak, cold, tiny, baby lamb for us. We took that little lamby and put it in a box with a heat pad. We attempted to used  a syringe to dribble warm, sugary milk into its mouth. It was not interested. It could not hold up it's head. It was so weak and frail. I truly did not think it would live. I was kinda frustrated and not in the mood to deal with this. But felt like God had something in this for us.
 A couple hours of warming the lamb, we gave it some honey on our fingers. That seemed to strengthen it a bit. By bedtime we were able to get up to 3 oz into it's mouth. It was still weak and we had to hold it's head up to get it to drink. We got up once during the night to feed it. It looked so much better already. By morning it was standing up. We had hope. She was a fighter.Tonight she is running around my house.
 There is something so incredible special about a baby lamb at Christmas. she loves the kids already and follows them around. It seems fitting that this lamb, a Christmas miracle would represent my year.
God is giving us new memories, new life, new beginnings. I am looking forward to what God is going to do in the next year.

We are making of a bucket list/dream big list for the next 6 years until the kids are adults.
take a week long trip to Florida
take a trip to Romania
take a long trip to explore the West
have each kiddoe continue building their own business
take a mission trip to a 3rd world country

Tuesday, December 20, 2016

Christmas Came Early

Today was a day that my kids had much anticipated. Christmas with our Christmas Angels. Every year The S family brings us Christmas gifts. My kids love the gifts, love the fune evening with this family, and love hearing stories about Mesh from J. 
This morning Fayth woke up with an awful belly ache. She came out to find in me in the living room before 6. I gave her some stuff for her belly ache and send her back to bed. We had planned to babysit this morning, then head to the S family's house for dinner tonight.

Somewhere around 9 am, Fayth lost the couple bites of breakfast she had eaten.. so we made the decision to stay home! THe kids were bitter disappointed. But The S family offered to bring dinner and the gifts over for them.

Every year, this amazing family buys new shoes and new pjs for all the kids. This is a great delight for the kids and a huge huge blessing for me. We got together last year to open gifts and hang out for a bit, something both their kids and my kids loved.

They were totally excited to open their presents. I wish I would have thought to Facebook Live this!

Nesiah was quite tickled with her stuffie that prays!

Bubbie loves his backpack. He just recently broke the buckle on his favorite little backpack. This new backpack totally made his day. He loves his new shoes and his pjs too!

We were blessed by the delicious dinner that Angie had prepared for us. The Beiler's Donuts were a huge hit with the kids. The new shoes, pjs and toys a fun gift. My kids rarely get new shoes, I am a thrift shopper. So brand new shoes, straight from the store are a delight. We are so thankful for these amazing people who have themselves had some struggles this year, yet they do not hesitate to serve others.

Saturday, December 10, 2016

Miracles and Real Food Blends

One of the most satisifying adventures I have undertaken in recent years, has been to switch Nesiah to a blended diet. Her team with NACD wanted me to have her eat real food by mouth.I wanted her eating healthy food. I am a firm believer in a well fed, well rested child is a well behaved child.

So we attempted feeding  Nesiah by mouth but I was not successful in getting enough calories into her. Her team kept pushing me to put more time and effort into this. So I decided to do some research and figure out a way to get real food into her without the time consuming task of feeding her by mouth. In my research I discovered some very interesting things! Most importantly I found this facebook group of mommas that feed their kids blended diets through the gtube.

So I joined this facebook group and did my research. I asked a million questions and grew more fascinated every day. These mommas are truly amazing!  There is an amazing difference in kids who consume real food vs the sugary formulas.

This from the Blenderized RN Fb page, a basic outline of the most popular pediatric formula. Pediasure.

Blenderized RN assessment 1. A regular diet should be balanced with 50% carbohydrates, fats 30-35% and protein 15-20%. Pediasure is 59% corn syrup with a total of 67% of carbs and doesn’t have the correct percentages for a well balanced diet. 2. The World Health Organization says sugar should make up no more than 5% of a child’s daily diet. The daily amount of corn syrup in this diet is 109 grams or 59% of the total diet. That is almost 12 TIMES the recommended sugar amount. 3. Protein should be derived from plant-based sources within the diet along with animal based sources. Using whey might cause stress on the kidneys because not only is the protein double the recommended amount but it is only from an animal source. 4. Because corn syrup itself doesn’t have any nutritional value the formula needs to be supplemented with man made vitamins and minerals. Essentially there is NO FOOD in this can

So after all my research I was ready to get started. I started blending food in the ninja (that I picked up at a yardsale last summer). Nesiah seemed to be calmer and happier within a day or two. Even my babysitter commented on  the difference in her personality. Nesiah is doing new things and making great progress. She was amazing all of us.. Then my ninja died.

So no blender meant no blended diet. I freaked out, cried a little and prayed a lot. It was Sunday morning. I was so upset over this. I prayed that God would provide the funds for a new blender. My research had shown that a Blendtec was the best blender for blends. They make blends that totally make your life easier. They are fast and good.. and REALLY REALLY PRICEY. So I prayed..

Not an hour later, I got a message on fb from someone who had seen a post I had made after my blender broke. They wanted to buy me a blender, of my choice. I was a little in awe of how fast God had answered my prayers and yet a embarrassed to tell this amazing person that what I really wanted/needed was a $400 blender. Long story short.. We ended up finding one on Groupon for a lot less and this amazing lady blessed us with a new blendtec.

I was so tickled to have the blendtec. It made blends so much easier and we mixed all kinds of yummy foods together for Abi. The big kids drink 5-8 smoothies almost every day. I even discovered I could make sunbutter for my peanut allergy kiddoe!! We had so much fun with this blendtec!

Then one day as I was using it, only about a week after receiving it, it started shaking and rattling when I used it. I nursed it along, trying to figure out why it was having these issues. The day before Thanksgiving I was making sunflower butter for Bubs and the blade just fell right out of the bottom of the pitcher. I was soooooo upset. But... ahhh I had registered for a warranty the day I received it! So I called blendtec. The guy says "oh, yea you have the 2015 model. We have all kinds of problems with them. I will send you a new jar immediately!" Two weeks later, my new jar arrived and we are back in business!

Now Nesiah gets to eat normal food. Today she had quinoa, chicken breast, corn, peas, carrots, coconut cream and a bit of sunflower oil. Breakfast was oatmeal, eggs, coconut cream, chia seeds and some bone broth. We just throw everything in the Blendtec and within minutes we have a creamy yogurt consistency blend which I  bolus feed in the gtube! It is truly the most satisfying feeling.

So far her bowel movements are improving, her cognitive levels are improving and she is stimming a lot less. IT is really not that much work for me since I have blendtec.

The second part of this story is only now unfolding. In my research I found this company called Real Food Blends. This company was started by a tubie momma who wanted real food for her kiddoe. I decided to look into getting this for Nesiah. Real Food Blends are foods like meat, potatoes and veggies blended and packaged then send out to families to feed their kiddoes. It works like formula but is truly real food. If I had this, I could blend once or twice a day and use this for the other meals.

The cost per day for this RFB would be approx $10 a day. We are on a strict and tight budget. There is no way that would fit into my budget.So I called the company to chat with someone about my options. I discovered that insurance will pay for RFB if a child is currently receiving formula.

So I called the insurance company, they said they would not cover it unless she had major food allergies. I just happened to stumble upon a code that was used to bill insurance. so I asked if this code would help them get me coverage. She put me on hold for a long time.. but came back and told me they would cover it after all!! Step one done.

So my next step was to call GI and see if they would write my script/orders to get these supplies. I was not very clear in my needs and stumbled a bit in explaining what I wanted. I was still trying to figure it all out and the nurse was not helpful.So she scheduled me for a medical appointment, 9 weeks away. I was not impressed but already had made an idiot out of myself so I shut up and prayed.

 I called my Durable Medical Equipment company that delivers to us each month, formula, syringes, feeding tubes, and extensions. They informed me that they would not carry this product. So I did some research and discovered that there is a local DME company that does carry RFB. So I called W.S, I spoke to a wonderful lady who was beyond helpful. They had another child that got RFB. She explained to me, exactly what I would need and how much of each and how to present it to the Dr to get the best options for Nesiah. She did a bunch of behind the scenes paperwork and got everything ready for me. She laid out to me what I would need to do etc..

So now it was time to reapproach the GI. The nurse was no longer returning my phone calls. I prayed for several days trying to find a good option. Suddenly I remembered... I have an online account where I can contact the DR himself! So I wrote out a long email, detailing everything the DME and I had discussed. I proposed my plan to blend  some but use the RFB and keep a bottle or two of the formula for each day. We have a caloric goal to meet each day. I sent the email and prayed, knowing I was going in over the nurse's head. Two days later, I received an email from the Dr. All it said was "I am in agreement. I have asked the nursing staff to take care of this." So that was yet another answer from God.

So I moved forward with getting everything set up between the insurance company, the DME and the GI.  Yesterday I got a call from the DME, my first shipment will be out next week.  I am sooo thrilled!

I will still be blending atleast 2 meals a day. I want to build a stockpile of RFB for when we travel or for those days when I am overwhelmed/tired/lazy and can not blend.

I love how God works. He placed this desire in my heart, then he provided each step of the way... Giving me what I needed.

Tuesday, December 6, 2016


I hate when people pity me...
I hate when people ignore me...
I really just want people to be comfortable around me.
Some days I wanna be real and vent about how hard the holidays can be.
But then everyone feels sorry for ya and wants to "bless you" ...
Or they shut you out of their lives, cause you make them uncomfortable....
Then you feel guilty for venting...

I am blessed beyond measure by my kids.
They love Christmas, songs, candy, presents, lights, joy, advent..
They are counting the days and hours until Christmas..
We do all the traditions, because I want my kids to have amazing memories..

But when they go to bed...
I think about what it would be like and the tears fall..
If M was still here...
If we were invited to Christmas parties..
If I could share the excitement of prepping gifts for the kids with him..
If we could sit and enjoy a cup of hot cocoa by the tree..

It's been almost 10 years..
Time to let go they say, you have to so many blessings...
But that really only makes things worse..
Because nothing can ever replace that hole that was left behind..

I am thankful for my widow group,
They understand when no one else does..
They live it too..

I am thankful for the friends that understand..
The friends that call and check in...
The friends that give grace on the rough days..