Nov 26, 2014

Samantha's Appointment @ Wisconsin Children's Hospital

Samantha is scheduled to be seen at the Wisconsin Children's Hospital the first week of February.  She and her Mom will be there the entire week and need to raise funds for:  airfare, lodging, meals, possibly a rental car and incidentals.
You can make a donation here:
http://www.youcaring.com/medical-fundraiser/trip-to-children-s-hospital-of-wisconsin-autonomic-disorder-/114876
Please share, share, share. And thank you to all who have been supporting Jodie and Samantha over the past few weeks through your prayers, encouragement and donations.
Samantha takes Guitar as part of her therapy.


She also takes ballet.  Don't think they should stop the lessons.  Per the doctors ballet, and other classes, are vital to her therapy and development both physically, mentally and socially.

If you've read anything about Samantha's health issues you now that as an infant she was diagnosed with failure to thrive.  In photos you cannot tell how tiny she is compared to other girls her age unless you know how tall etc.  the other children are.  Samantha's body is proportional but tiny.  The photo above is her Mom's hand holding Samantha's pointe shoe which is TOO Big for her feet.

Nov 18, 2014

Fundraiser for Samantha


Post by Jodie, Samantha's Mom

(NOTE: this fund-raising page, has been updated for current needs, the first $1700 stated raised is from the last fundraiser, so that funding went to other needs and is not part of this trips funding. I couldn't figure out how to restart the total. working on fixing that so it is current)


   
My daughter Samantha was born with static encephalopathy, cerebral palsy, oral motor apraxia, an irregular chromosome string with a huge duplication, asthma, gerd, learning disabilities, sleep apnea and other health issues. As a baby she grew really slowly and had a diagnosis of failure to thrive, and was delayed in all of her physical abilities. She had many doctors, testing, and therapies. As time went on we adjusted and she learned things, even if that process was and is slower than others.


   Now she is a beautiful 17yr old, kind and caring teenager. Biologically she is 17, but because of the delays and static encephalopathy she is more like an 11yr old. Within this last year she has had new medical issues emerging. The doctors believe these issues stem from the genetic abnormalities. Unfortunately her genetic duplications are rare and unstudied. So there is little at this point that we know and have to try and deal with stuff as it appears.  She has episodes where she loses time and what is going on around her, leaving her confused and unsure what just happened.


   The neurologists has now diagnosed her with autonomic issues. We are working on trying to get her a lightweight cooling vest, because she doesn't sweat and her body doesn't regulate its temperature well, putting her at risk from the heat and the cold, like hypothermia. She been dealing with vertigo, migraines, nausea, abdominal pain, all over pain, sensory issues, and mental neurological issues more.



We recently found out she has bile gastritis on top of the GERD. She has been having a lot of trouble off & on with eating and getting enough nutrition. She is on several different high calorie nutrition drinks & 4 different meds just for this. If she keeps losing weight and not getting enough nutrition, there are a couple of surgeries or feeding tubes options they may try if needed. Autonomic issues cover the GI tract also, and other issues she has I stated above. So at the hospital she will be seeing many doctors. She will be seeing an autonomic neurologist, gastroenterologist, cardiologists, sleep specialist, and geneticist.

    The Children's Hospital pediatric neurogastroenterology, motility and autonomic disorders program has one of the few state-of-the-art pediatric autonomic laboratories in the country equipped to help diagnose children with autonomic disorders. We live in North Carolina and this is very far and we need to stay for a week. We need to raise money for air fare and lodging. There will also be many new bills adding to my current medical debt. But she needs this and hopefully they can help her more. Giving us a better diagnosis for the genetic & other issues. So we can know how to medically and emotionally help her in the future.

    Because of her static encephalopathy and learning disabilities, Samantha is delayed and has to attend some therapies and counseling. Psychologically there is a lot to deal with because of the static encephalopathy, learning disabilities & oral motor apraxia. Any help we can get to make things better and allow her to deal with daily life issues and situations would be great. If we can get a better diagnosis and know how to help treat some of the medical issues that would be wonderful. We just want her to be as happy and healthy as she can be. To live the best she can later in life as a productive member in our society.

     This is the best I can do to sum up the issues without going on for many more pages. A child with disabilities needs many services and it can be overwhelming financially, no matter how much you do to keep up with it. I thank you so much for taking the time to read some of our story. If you can donate to our fund to help Samantha get the continuing care that she needs we thank you sooooo much. Sharing the link to this page, so others can see it is also a great help. Thank you



Samantha's Facebook page

Samantha's page to donate










Oct 20, 2014

God IS Good!

Job Update:
David's interview went very well but he hasn't heard anything. We are praying that this week he will get a definite answer either way. Meanwhile he is applying for everything he can.
Money is tight but our God is good and he is providing. We have a roof over our head, a full freezer and fridge and cupboards, we have water, electricity and gas, both cars are running. God IS good!

Oct 9, 2014

More Waiting on our Awesome GOD. Waiting without fear!

David is home and his interview went very well. Now we're just waiting again. But I'm not worrying. I feel a peace about this whole situation. We met this morning with a financial planner to learn what to do with his retirement etc. This is a Christian company with very conservative values. If anyone is interested I can give you the contact info for the planner we met with.
Thank you again for your prayers and kind words of encouragement. Our Father God is truly an awesome GOD.

Oct 6, 2014

Thank you for your prayers....

David just left for the airport. Please pray for him. He's feeling nervous and uncertain about the whole thing. A lot of it is the fact that he will be on a very tight schedule tomorrow afternoon and may not make his return flight. I can't tell you all how much your prayers over these last weeks have meant to us.

Sep 29, 2014

Prayer to stay calm

Today is the day. David has headed to Charlotte to be officially terminated. We are surprisingly calm about it. Please pray that he will be able to make wise decisions about how to handle things financially.
I have a killer migraine today. I'm sure part of it is stress even tho I feel calm. But the other factor is this weather we're having.
Next Monday David heads out of town for an interview. Pray for a safe flight for him then and for wisdom in the meetings he will have.
Most of all pray for our whole family to trust in our Father who has promised to supply ALL our NEEDS.

Sep 23, 2014

Drying Racks, GOD is good

A young mom I know, Kathryn Wentz, quite frequently posts, "God is good". This is true. Unfortunately I too often forget. Today I was reminded in a simple yet profound way.
It's easy to see God in the big things and forget He's in the small things too. We're told in Matthew 10:29-33:
“. 29 Are not two sparrows sold for a penny? And not one of them will fall to the ground apart from your Father. 30 But even the hairs of your head are all numbered. 31 Fear not, theref...ore; you are of more value than many sparrows. 32 So everyone who acknowledges me before men, I also will acknowledge before my Father who is in heaven, 33 but whoever denies me before men, I also will deny before my Father who is in heaven.
He watches over the tiny sparrow and knows the number of hairs on every head.
The way He showed His care for us was a simple, wooden laundry drying rack.
Our dryer has not been working for several months. When the repair man came to fix it, he said it wasn't worth fixing. So since warm weather was approaching we decided to just wait and get the part needed ourselves.
Meanwhile we have been hanging our laundry on the line and drying racks. Today, with cool weather coming David felt we needed to purchase 1 more drying rack. He called around and found 1 hardware store that had 1 rack.
Before he headed into Concord to buy it he took Sarah to the bank. On the way back she saw a drying rack on the side of the road. So they went back, picked it up, and brought it home.
One simple need. A Father who cares about the tiny, unimportant details. Being in the right place at the right time.
And if He cares about a drying rack how much more does He care about the job situation? And even more about our salvation.
GOD. Is. Good.

Sep 6, 2014

Life

I am so tired of the constant migraine.  Some hours are better than others, but today is just too much.  I'm hoping that a lot of the problem is the stress related to David's job situation.  That as soon as we know something, anything for sure I will have at least a decrease in the level of pain and nausea.

So, I'll keep trying to avoid as many migraine triggers as I can, keep my blood sugar levels down, help David in any way I can, homeschool the kids, coach Science Olympiad, pay the bills, cook the meals, get the groceries, assign chores, keep trusting that He who began a good work in me will complete it.  It may not be this side of Heaven, but it will happen.
Sarah and Rusty, my parents dog.  He LOVES Sarah.





So if the Gibson family crosses your thoughts would you please pray for us?

Aug 23, 2014

No. Migraine. Today!

I.  do. NOT have a migraine today! 
I've had a bad one since Monday.  Never below an 8 of 10 on the wonderful pain scale for more than a few minutes. 
When we got home yesterday from Hickory I was ready to chop my head off.  I couldn't get to sleep last night until about 2 or 2 a.m. and the migraine was still there. 

I got up migraine free but leery, and made a grocery list.  David and I ate breakfast at Bojangles, went to Aldi and got groceries.  Came home and put them away, started the BBQ on the grill and here it is, 3 p.m., and NO MIGRAINE.

I cannot tell you how happy am right now.  I was really worried that I wouldn't be able to go to church tomorrow morning but now, even if I wake with a migraine tomorrow, because I've had these hours free of pain, I think I'll still be able to be there AND I might just be able to go to the youth group cook-out tomorrow evening.  Though I won't be able to eat what they are having.  No nitrite and nitrate filled hot dogs for me. 

Now I'm going to get off the computer, check the BBQ then work on straightening out the school bookcase.

Ta-ta for now!!

New Tradition to Observe


The Gibson's, David and I,  have a history of cooking NC style BBQ. 

The back story:  David & I met at Troutman's BBG on Church St. in Concord.  I was a waitress and he was a customer. He and his family had been coming there since he was 12.  He was 22 when we met.   Over the years I worked at 3 different locations and when I left I had been a store manager for several years.  While there I learned a lot about cooking bbq which I have put into practice ever since.

Second back story:  Daniel excels at finding perfect little gifts for us. A few Christmas's ago he gave me a fridge magnet that reads, "Dinner will be served at the sound of the smoke alarm."  Truer words have not been said.  Not because I can't cook but because our smoke detectors are extremely sensitive and unless the oven is spotless almost any cooking will set them off.

Today is BBQ cooking day.  On a gas grill.  On the carport.  Invisible to passing cars except for the billowing smoke from the hickory chips which are smoldering away in a metal Ikea silverware basket that is perfect for this. 

This is the Ikea container.  I have 3, only 1 is used on the grill.
Ikea Stainless Steel Caddy I use

Lots. Of. Smoke.
 
It's hard to photograph smoke.
 

So, that new tradition I mentioned. 
Having the Fire Department or County Sherriff  arrive because a passing motorist thought our house was on fire.  Today it was the Sherriff. 

The funniest thing about today's incident was that David and I had talked about them showing up on previous occasions and are thinking about cooking again and taking it to the guys at the Fire Dept., about 1 block down the street. 

Mmmm!  BBQ

And... for my non-southern friends.  BBQ is a noun, not a verb.

Listen to Rhett and Link for more info.

 

Aug 16, 2014

Update on David's job situation.


After 4 months of waiting he was put on administrative leave for 30 days. After that we will be without any income or insurance. Please pray that during this time we will not be fearful and anxious but instead will trust our Father to continue to guide and provide for us.
David continues to get job interviews but nothing ha been offered so far.
...
Through all of this he has been a wonderful example of grace under pressure, trusting in our Father, and taking each day as it comes. He gave his all at work to the very end.
Thank you for all the messages, prayers and encouragement. It has shown me how highly the people he works (worked) with regard him. They are shocked by this whole situation.

Aug 7, 2014

The sum is greater than the parts...

It's one of those days when the combination of migraine symptoms is worse than any one symptom alone. Especially the nausea. Give me one or the other but both pain and nausea make it much harder to cope. going to my family doctor today since my BP has been running high. Maybe that will help. I ordered some Baltic amber beads from esty yesterday and hope they arrive quickly. I'm going to make a bracelet to attach my medical id tag to. Hoping that each little improvement... or change I make adds up and things become more tolerable.
Usually I look forward to the start of a new homeschool year. Not this year. I'm dreading it. Even though the kids are in high school and mostly self taught I still have to plan it, purchase the books and then grade their lessons. It just seems like too much.
I'm so thankful for this group. I hate that we are all here because of this horrid disease, but so thankful that there are others in the world who understand. For so long I've felt alone. Like I truly was the only one who had these specific problems with migraine. But now I know I'm not and I thank GOD for this group.
Hoping as many of you as possible have a great day.

Aug 3, 2014

Music and GOD, my thoughts today




There's no space that His love can't reach
There's no place where we can't' find peace
There's no end to amazing grace
 
Take me in with Your arms spread wide
Take me in like an orphan child
Never let go
Never leave my side
 
I am
Holding on to You
I am
Holding on to You
In the middle of the storm
I am holding on
I am
 
Love like this
Oh my God to find
I am overwhelmed
With a joy divine
Love like this sets our hearts on fire
 
This is my resurrection song
This is my hallelujah come
This is why it's to You I run
 
There's no space that His love can't reach
There's no place where we can't find peace
There's no end to amazing grace


Read more: Crowder - I Am Lyrics | MetroLyrics


Music speaks to my soul more than any other media or form of communication.  I'm no musician in the professional or even very talented sense.  My piano skills are mediocre at best.  I play piano for my own relaxation and enjoyment.  My voice is no longer in tune with constant practice, but my heart if full of music and I can't wait to sing HIS praises in heaven! 

Focus on the lyrics.  It's the words that speak to me. 

It's the words that grab my attention and my heart.


Wes mentioned in the sermon this morning that "good" is not enough to describe GOD. He said peanut butter is "good" and that doesn't even begin to compare. In truth there are no adjectives in any language on earth to totally describe HIM. If I want to use the adjectives in my heart language, American English, to describe GOD then I can never use any adjective ever again to describe anything else. And that still wouldn't be adequate.