Wednesday, April 23, 2014

filed under "can't make this sh** up"...

listening to her Mama squeal with delight as Daddy went to get her meds...

Filed under "can't make this shit up": 

At 9:20 pm (EST) this evening we received a call from CVS Pharmacy that Courtney's ONFI prescription was ready to pick up. After a very confused 10 minute convo with the Pharmacist, it appears that VA Medicaid accepted our claim at the close of business today and will be covering her seizure meds. The pharmacy received the approval at 8:00pm this evening 3 hours after I put out the call for prayers. I have no doubt that our onslaught of paperwork over the past ten days plus constant checking up on progress did the trick. That and the prayer avalanche unleashed upon their unsuspecting souls. 

The real kicker is that there is NO co-pay on it. We have been paying $125 a month for the past year and now NOTHING! We checked three times. The pharmacist was chuckling at our disbelief. So Courtney is snug as a bug in bed, fully medicated and smiling. 

I dare you to tell me there are no miracles! I dare you to tell me prayer is not the most powerful weapon we Christians wield. Go on...make my day! God is GOOD all the time! Thank for standing with us once more.

coffee for your heart #15 ~ oceans of mercy...

Grandma Green and her favorite granddaughter...LOL!

It's time for a little encouragement with Holley Gerth on this Wednesday afternoon. 


We have some fabulous news on the insurance front. On the third and final appeal in regards to Courtney's AFO's, WE WON!! That's right my friends, perseverance pays off BIG TIME!! Her AFO's will be completely covered by our private insurance. Thank you Lord!!

We found out through this process that Virginia Medicaid does not cover ANY orthotics after the age of 21. Why? Who the heck knows why. It's insane but then it's a government run insurance so there you go. 

We will use part of the donated monies to pay her April therapy bill and leave the rest to go toward her new wheelchair and other adaptive equipment. We go to Kennedy-Krieger at Hopkins on May 9 to begin that process. 

A little Easter miracle for the Courtmiester. Please keep praying about the ONFI, her new seizure medication. We have enough through Friday, but we are still waiting on insurance approval and it has me a bit concerned. I have a call into the Doc's office to find out what the next step will be. Without insurance coverage on that med, there is no way we could afford it, so pray, pray, pray that this get's resolved pronto!

There you go my friends. A little encouragement and a Courtney update to boot. Could you ask for more? 

I live to serve. 

Happy Wednesday!

Coffee for Your Heart #15 from Mary Lenaburg on Vimeo.


** update at 5:15 p.m. EST **

Calling ALL prayer warriors - just talked to the Neuro Doc and we need some serious prayer support. VA Medicaid has asked for more documentation in regards to her ONFI seizure meds. They are really pushing back on paying for such an expensive med. Courtney has been on it for a year with no problem but with new regulations come new issues. This med saved her life last spring. I cannot imagine her daily life without it. 

We will cut her dose in half tonight and by Saturday she will be off of it completely if they keep dragging their heels. This could be disastrous for our girl. Can you say intractable seizures?? Hospital stay?? Ugh!!

We cannot afford this med on our own, not even close. So please send up some prayers on our girls behalf over the next few days. This is going to be tough. Thanks!

Monday, April 21, 2014

in the kitchen ~ grandma stuecken's german donuts...


There is one Easter tradition that my husband and I have kept ALL twenty-six years of our marriage without missing a beat. Making my Grandmother Stuecken's Westfalishe Oelkrsbben or as we loving call them Grandma's German Donuts. 

These deep fried gems take a little roll in cinnamon sugar making them extra happy. When you have one you will not be able to resist seven more. They are that good. I make them every Holy Saturday for our Easter morning breakfast. The one year I suggested that maybe we could skip it, there was a near mutiny in my house. I haven't made that mistake since. 

Since I only make them once a year, my guys take it very seriously. 

They have a slight hint of lemon and are best eaten within the first 48 hours. Each one is unique in shape and that's one of the things we like about them. No two are the same. The recipe is not that difficult and once you start frying them it goes pretty quickly. I encourage you to give them a try. 

Celebrating the Feast, 



Grandma Stuecken's German Donuts

Ingredients:
2 pounds all purpose flour
1 cake (pkg) of yeast
1 1/2 pints of lukewarm whole milk (3 cups)
4 whole eggs
2 Tablespoon sugar
2 Teaspoons salt
1/3 pound butter (softened) - 1 1/3 sticks
grated rind of two lemons
cinnamon and sugar

Directions:
Place flour in large wooden or ceramic bowl. Dissolve yeast in milk. Mix with flour. Add 4 whole eggs, sugar, salt, butter, grated rind. Mix well and let rise in warm place for about 2 hours. Drop by teaspoonful into hot fat (vegetable shortening) until light brown, turning occassionally. Roll in a pan of cinnamon sugar. Cool completely before storing in an airtight container. Best eaten within 48 hours of making. 

Sunday, April 20, 2014

what i wore sunday ~ vol. 49 ~ the easter 2014 edition...


Happy Easter!!

He is Risen!! He has Risen indeed!!

I absolutely LOVE this day. It's one of my favorites of the year. The beauty of the liturgy, the music, and celebrating the absolute JOY of the Risen LORD! Then there is all the food and celebration which I have been preparing for for days and finally the outfit. 


When I was growing up I always got a new dress at Easter. It was so fun to go to the "BIG" mall with my mom and pick out something fancy for the special day. Usually pink until my love of blue superseded by the third grade. 

This year my outfit came from Dress Barn and JCPenney's with the shoes from DSW. I was quite happy with the result especially since the dress was in a SMALLER size! Score. 


Miss Courtney wore a knit dress from the Joe Fresh line at Penney's and a hot pink sweater form the Gap. I think she was pretty comfy. 

This year we attended the Easter Vigil as a family. I know it was kind of crazy given the length of the service, but I do love it so and Miss Courtney was in a good place so we took a shot. 


Courtney fell asleep after the second reading and I ended up holding her in my lap for the remainder of the service. I didn't mind a bit. 


Since we went to Vigil Mass, this morning was nice and slow. My Mom had invited us several weeks ago to come her way for the day. She promised that I wouldn't have to do a thing, since I have hosted Christmas and Easter for the last ten years. She instructed me that I wouldn't be allowed to even do the dishes. 


Well sign me up sister! I am so there. I was so happy I danced in my new to me sweater and denim skirt. The hot pink flats you have seen before, came from DSW. LOVE them!

My Mama loves me so. She knew things had been tough these last two weeks and she just wanted to give me a moment or three to rest. I learned to love and care for my family from the BEST example there could ever be. 

There was the BONUS of having my little sister join us. It was a beautiful afternoon. Miss Courtney wore her Christmas gift from my Mom. She looked so cute. 


I love you Mom. Thanks for the most wonderful Easter meal I have had in many years. You took such good care of all of us today. I am honored and so blessed to be your daughter. 

Truly I am. 

Happy Easter and may you all have a FABULOUS week!!


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Go take a photo and join us won't you? Head on over to FineLinenandPurple and link up. Then you can head over here to Carolyn @ CCMMCFee What I Wore to Church,  Watch What I'm Wearing, celebrating modesty and fashionI'm also over at Sunday Style @ Plane Pretty , Tucker UpMonday Bloom @ DC in Style and The Pleated Poppy. It's a party!



DCinStyle


Perspective} WIW to church

Thursday, April 17, 2014

coffee for your heart ~ #14 ~ YOU are WORTH dying for!

We are doing a combo package today. A little encouragement with Holley Gerth and celebration of everyday contentment with Like Mother, Like Daughter.

On this most Holy Thursday I pray that each one of you knows that YOU are WORTH dying for. Our Lord chose love over all else. Love for you and love for me so that we might be together for eternity.

LOVE wins! ALWAYS!


Blessings and Grace,


Coffee for Your Heart ~ #14 ~ YOU are worth dying for... from Mary Lenaburg on Vimeo.


~ Capturing the context of contentment in everyday life ~



Tuesday, April 15, 2014

hope in an elevator...

tube feeding 101

It rained. 

Then there was hail. 

Then more rain. 

Yes, Easter is in five days. 

This is crazy insane weather. 

Ah well. We are a crazy insane family so I guess it fits. 

Today, after Miss Courtney got her first tube feeding at  o'dark thirty a.m. I started my annual spring cleaning. I began in the kitchen which is a major hub in our home. My dry goods pantry was a mess. I emptied it out and then decided to move things around, to make it more user friendly. 

You know how you start organizing something thinking it will take you an hour then three hours later you're still not done...yeah...it was one of those projects. I had hoped to get more done today but at least I got kitchen straightened. 

One job down two million four hundred and fifty two left. Woop! Woop! Ahhh spring cleaning how I need you yet abhor you all at once. One icky job at a time. 


The one bright spot in my day was that my Mama came to visit. She helped me with Courtney and folded my socks. I do love how my Mama is always willing to step in and help no matter what needs doing. When we were done we decided to hit the road. 

Off to the mall we went. 

It has been quite a while since Miss Courtney had been out. She laughed and smiled the whole time. We had a little lunch and she just giggled form all the action. It was so nice. 

Then we got on the elevator to head to the van and all hell broke loose. Courtney had a massive seven minute seizure. There were three other children in there with their Mom. I was trying hard to keep smiling and talk quietly to Courtney so they wouldn't freak out. The Mom was calm and said she was so sorry for Courtney and told her kids everything was OK, not to worry. 

sound asleep when we got home...
Courtney was in full tonic-clonic jerks with gagging and choking. She was seizing so hard her wheelchair was shaking. My Mom braced herself against the chair and held Courtney's hands so she wouldn't hit anyone while she seized. I just kept whispering "Hail Mary's" in her ear and told her it would all be OK. 

It was the slowest elevator ride ever.  

The little girl, about four or five years old, looked at Courtney and then told her Mom "She's so sad. She needs to go to the Disney store for an Anna doll (like the one she was holding) then she will be happy."

Her Mom assured her that she would be OK in time. Then the little girl looked at me and said "She can have mine to hold if that would make her smile. Anna always makes me smile."

I almost lost it. How incredibly sweet. There is hope for the future my friends. I saw it today in this little ones face, so concerned for my Courtney, whom she didn't even know. All she wanted was for her to be happy and OK. 

Oh sweet girl, if only the Anna doll would make it so I would buy every single one. 

Monday, April 14, 2014

breaking open a reckless love...


As a Catholic Christian, this week marks the holiest week of the church year. It is what we wait for all year, the Triduum. Holy Thursday when Our Lord gathered the twelve and instituted the Eucharist at the Last Supper. Good Friday when we walk with Him on the road to Calvary and watch as He is put to death by our very own sin. Holy Saturday when the universe stands silent waiting for the Son to rise.

I was struck last evening as Deacon Marques was preaching about the importance of this week. He pointed out that in general we tend to rush to the big feast, barely paying attention to the importance of this week leading up to those three days. I pondered this for a bit, examining my own conscience looking at how I have treated this week in the past. I decided then that this year would be different. This year I really want to enter into what these days are for. 

To wait and hope and pray and wonder and pray some more.

This week is all about suffering, serving and loving above all else. I am coming to understand that concept on a deeper level every year. Two years ago on Holy Thursday my Courtney almost died. We spent Easter in the hospital. I know I have written about this moment before, but it comes to mind every Holy Week. The idea that we are here for just a short while to learn how to love and serve the Lord.  

With all of Courtney's issues this past week, I have done things I never thought I would have to do. Being the parent of a special needs child requires constant care and monitoring, especially when that child id non-verbal and non-ambulatory. It is challenging. I make no bones about that. It has made me paranoid in certain situations and more open in others.

As I enter into this Holy Week there is much to do. There is a home to Spring Clean, a daughter to care for and a husband to feed. I am tired just thinking about it all. I know  your list is just as long and varied as mine. I will admit to being envious of those who have someone come and clean their homes. I dream of that day. It sounds delightful doesn't it? If you are blessed to have this gift, don't ever take it for granted. To be a peace about the state of your home is a gift. 

But alas, I digress. I am writing my name in my dust. LOL!

I took a moment this morning over coffee to take a deep breath and decide how I would approach this day and this day alone. As I read todays Gospel I was struck by how over the top Mary's action was. She broke open the alabaster jar and poured it out over Our Lord's feet wiping it away with her hair. The apostles questioned the extravagance of it all and Jesus put them in their place. 

Extravagance. 

Reckless love. 

Over and above what is called for. 

Isn't this what Our Lord gave us on the Cross? An extravagant overabundance of love, given freely and with great joy. 



We have a Pieta in our church. I often spend time meditating in front of it. I look at the weariness on Our Lady's face and the peace on Our Lord's face. I know what that weariness feels like and I pray for that peace. So how do I make it all come together when I have only my own sweat equity to count on with the occasional supernatural push from above? 

I break open that alabaster jar and pour out my heart and soul with an extravagant and reckless love for those God has given me to care for. It's not always pretty or easy. 

Heck, let's be honest. It's never pretty or easy. It just is what it is. 

The only way I know to give honor and glory to my God, who gave Himself so extravagantly and with so much love, withholding nothing from me, is to embrace the hard work of living each and every day as best I can. If that means cleaning toilets, changing dirty diapers, dusting and folding and cooking and cleaning and dealing with idiot insurance companies, then I do it. I do it with joy and a smile. 

It is a choice to smile. It is a choice to love this way. Not and easy one, but one nonetheless. 

So on this Monday of Holy Week, I will pray (for me and you) and love and serve as best my body, mind and heart allow. I will give glory and honor with ALL I do and say to Him who loves me with endless mercy and grace.  

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