Tuesday, September 2, 2014

3000 calories and a little olive oil...


A couple of housekeeping notes if you will:
First, thanks so much to Chris and Monica over at the Catholic Bloggers Network who started a GoFundMe page to hep take care of Courtney's medical bills and help with the increased living expenses. We are humbled and so grateful to be loved by so many. 

Second, we have started saying the Novena to St. Joseph for Jerry's employment situation. His lay-off date is September 19. He is interviewing within the company as well as with other companies but nothing yet. If you can join us beginning tonight. You can find the Novena here... 

Last, we still have the PayPal open for donations as well. You will find the button on the right hand side of the blog. Again anything donated goes to medical expenses and Courtney's living expenses including food for her new formula formulation. The cost of this homemade formula has jumped considerably these last three months. I know there will be additional expenses as we go forward with her palliative care in the coming weeks/months. Thank you once again. 

OK...now on with today's lovely little exercise in fun...

This morning began with a very sleepy Courtney and a Mom fighting a headache of monumental proportions. I knew the past few days were catching up with me and quickly. My Mom had arrived to help me with this morning's Gastroenterology appointment with Courtney. Thank goodness, I had still had a Starbucks gift card and I knew caffeine would help my head. 

My heart is a whole other matter. 

I was dreading going to the G-tube clinic. I didn't want to face Courtney's weight loss or the fact that this was the first day of our new "normal". There is nothing normal about this journey. Nothing. I knew that once we arrived at the doctor's office and went through everything that was going to change, that when we left, we would be in a whole new ball game. 


I don't want a whole new ball game. I want to go back in time six weeks and just pretend that all is well and Miss Courtney is kicking some serious butt. I want to go back to those days of her laughing and smiling constantly, with only one seizure instead of hundreds. I want to go back when she hummed and sang to me. Now all I get are sleepy snores and possibly a pirate eye twice a day. 

This is not my Courtney. It makes me so very sad. I am trying to find the joy today and I gotta tell you it is a real stretch for me today. She weighs a mere 87 pounds. It hurts me to type that. She is only 5'3" due to her 31 degree scoliosis curvature. She would be 5'6" if her back was straight. She should weigh between 108-115 pounds. That's not going to happen with her current rate of seizures.

The dietician and neurologist figured out that Courtney probably burns anywhere between 350-700 calories per grand-mal seizure. She probably burns 75-150 calories with every petite-mal. You can imagine how many calories she went through this weekend when she was cluster seizing for a full 48 hours. Since her seizures have increased dramatically in frequency over the last six weeks, she is struggling to keep the weight on.The result of this is stress on her kidneys, liver and heart.  

The first course of action today was to address her weight loss, then we needed to make sure she could get all the calories needed through her g-tube. It's not longer safe for her to eat by mouth between the increased seizures and the heavier pharmaceutical load making her sleepy 85% of the day. Not the best circumstance for avoiding aspiration pneumonia. After about 90 minutes with the G-tube team consisting of the dietician,  gastroenterologist and the nurse practitioner we came up with a new formulation for her g-tube formula that will hopefully help her keep her weight steady and maybe even help her gain a pound or ten. 

By the time we left there, I was ready for a nap. Instead we headed to the grocery store so we could get all the stuff needed for her new formulation. Olive oil anyone? Beef, Chicken, and Vegetable Baby Food anyone? Yogurt, Baby Cereal, frozen spinach, lactose free whole milk and the list goes on. Put it all in the blender and whammo...3000 plus calories later we have a new feeding plan. 


It's a good place to start. I came home and made charts and notes and wrote out the new formula so Jerry and Jonathan and I are all on the same page. This way everyone knows what to feed her and when. It helps me feel less overwhelmed. 

They also took more blood because they didn't like how she looked. A little pale, a little jaundice, a little this, a little that. Her poor liver and kidneys are just going through the ringer right now. Lungs are clear though so that's something to celebrate. We will take what we can get and try and be at peace with the rest. 

Tomorrow we have the day off of doctors and I will be honest, I am A-OK with that. Thursday is the big day. Our meeting with Court's primary care to discuss her future care plan as well as going over a whole bunch of test results. We will also have a consult with her Neuro team to discuss her seizure meds. 

In the meantime, you can find me baking some peanut butter cookies, possibly some zucchini bread and maybe even a lasagna or two for the freezer. Yes...when stress is high I head to the kitchen and work it all out one dozen at a time.

Thank you for your continued prayers and practical support. We are so very grateful...just so very grateful. 


Monday, September 1, 2014

leaving room for a miracle...


We are home. We are all fed and have all slept. Miss Courtney is no longer seizing. That can change at any moment but for now, we have even gotten a few smiles. God is so very good. 

After my last few posts, my email and other social media blew up with so many of you sending love and oceans and oceans of prayers our way. Know that they were heard loud and clear. Our daughter was surrounded with so much love as were Jerry and I. 

On Sunday morning when Courtney and I were alone in her hospital room waiting for my mother to arrive with Holy Communion, I climbed into her bed with her. I needed to hold my girl after all that had transpired and empty my heart to her. 

Just the two of us in a dark room. No interruptions by medical staff, no more meds to take, just Mama and her girl. I put my phone on Pandora and pulled up one of my favorite channels, Christian artist Audrey Assad. Music really helps me channel my feeling sometimes, so Miss Courtney and I were going to have a little praise and worship church session. 

The first song was "You Speak" by Audrey Assad. Oh sweet molly the words just opened me right up. The opening verse just hit my heart and I knew I was meant to hear them in that moment:

"You liberate me from my own noise and my own chaos
From the chains of a lesser law You set me free
You liberate me from my own noise and my own chaos
From the chains of a lesser law You set me free

In the silence of the heart You speak
In the silence of the heart You speak
And it is there that I will know You
And You will know me
In the silence of the heart
You speak, You speak."

Needless to say, I wept. I wept hard. I even blew my nose in Courtney's hospital blanket since I knew we were taking her home. My little way of being a rabble rouser. I begged God in my head "Just tell me what to do and I will do it. No matter what.Just tell me."  I was quietly crying holding Courtney and telling her how proud I was of her and how much I loved her. She had taught me so much about love and life. The next song came on to my phone and my breath caught. 

It was "Love Never Fails" by Brandon Health. It was played at Jerry's and my 25th Anniversary Mass last summer. It is a song very close to our hearts. It just talks about how love is what life is all about. These words came and I sang them to my girl:

Love is not proud
Love does not boast
Love after all
Matters the most

Love does not run
Love does not hide
Love does not keep
Locked inside

Love is the river that flows through
Love never fails you

Love will sustain
Love will provide
Love will not cease
At the end of time

Love will protect
Love always hopes
Love still believes
When you don't

Love is the arms that are holding you
Love never fails you

When my heart won't make a sound
When I can't turn back around
When the sky is falling down
Nothing is greater than this
Greater than this

Love is right here
Love is alive
Love is the way
The truth the life

Love is the river than flows through
Love is the arms that are holding you
Love is the place you will fly to
Love never fails you


You don't think God was with me in that moment, singing to my daughter about His promise to her and to me? Love NEVER fails. That is what He is asking us to do. LOVE her. CARE for her. Let her continue to change us and mold us into the people that God needs us to be. 

I sang my heart out to her. She snuggled in more and I just cherished every second. I knew that God was talking to me through these words and when the next song started I knew He was talking directly to my daughter. 

I love Kristene Mueller. I love her voice, her quiet strength and her lyrics are something powerful. I heard the first word and knew the song "Homeward Bound" was coming. Thus song has significant meaning to us since it's release in 2008. It is a song that will be played at Courtney's funeral Mass whenever that will be. I cannot type all the words out, just listen to them. Imagine that my Courtney is singing them, because she was my friends, she was. 




My Courtney smiled!! She freaking smiled and laughed as that song was playing. I mean she smiled and laughed then she had a seizure then smiled and laughed, then had another seizure. It kept going throughout the song. She knew what was being sung, she knew that she would see His face and soon. 

I just held her and watched in silence. God was granting me a moment to see my child and know that she knows exactly what's happening and she can't wait to SEE Him!! She can't wait to finish this race and be with Him for an eternity. There was no fear in her face, no pain, nothing but joy!!

Those buck teeth were out and she was smiling from ear to ear. I just took it all in. I will never forget it as long as I live. My mother arrived with Communion right afterward and Miss Courtney received. She was just so calm and beautiful. I felt God's presence so strongly in that moment. My heart was so full. No fear, no worry, just love from Him to me. 

I told my mother what happened and she cried. My mother doesn't cry y'all. She is one stoic woman but she just kissed Miss Courtney's hand and told her that we would walk her all the way. She would never be alone or scared. She was loved and prayed for by so many people, that whatever time she had left with us would be filled with joy and not sorrow. 

And so it shall be. 

What now? The Docs at the hospital suggested it was time for Hospice. We have already been providing palliative care for the last several years, so this would be the next step. 

I wish it were that simple. Courtney doesn't have a disease. She has seizures and those seizures have caused all kinds of trouble in the last two decades, and continue to do their damage. It's not the seizures that hurt her per say. It's the meds to treat the seizures and the continued brain damage that has occurred over time due to medical intervention or her lack of oxygen over the years that have been the problem. The other issue is we do not have a time frame other than 1-3 years. We learned today that's not a hospice time frame. They come in at the end, 3-6 months or so. 

The can't give us an exact time frame. No one ever has. That's what makes every single day with her so precious. 

This doesn't mean we will be carrying this torch alone. We meet with the g-tube team and dietician tomorrow morning. She will not be able to eat by mouth any more (other than the occasional sweet potato when she has been seizure free for at least a day). It's not safe. It could lead to aspiration pneumonia. To be safe we will be feeding her exclusively by tube. 

I thought I would be sad, but I'm not. I just want to do my best for her. So tube feeding it is. We will have a new formulation made to cover her loss of calories for the seizures. I will feel better once I know we are feeding her everything she needs. 

Thursday is a big one. We meet with her family Doc that morning and this is when we will know what direction to follow. He will look over everything and help us come up with a plan that will work for our girl and our family. Her neurologist team will also be a part of this meeting as well. We will be monitoring her to make sure the new med amounts are doing their job. We may even be adding more meds to her list. We will see. 

Next will be the meeting with our pastor to make sure we are following everything we should do with our faith tradition. We will also begin making decisions about what will happen once she is with God. Not an easy conversation at all, but one that needs to happen sooner rather than later. 

We will make plans based on the results of those meetings. After talking with the Pediatric Chair at GUH I do know this. Courtney will not be leaving us this week. What I mean is we may have many weeks, months and maybe even a year ahead of us, or so the good Doc says.Yes, her liver and kidneys are under massive stress and her ammonia levels are once again climbing, but this is not going to be quick. 

As always we leave room for a miracle. 

God is the pilot of this plane and He will guide all the decisions that need to be made. He breathed life into her and He alone will decide when she is needed with Him.

You all have asked what can you do to help us? Well, there are the concrete things like the PayPal button on the right side of the blog or there is a new gofundme account that was established by some wonderful Catholic Bloggers to help cover some of our medical/living costs. Some have asked if they can send gift-cards and such...of course. you can do whatever. We humbly accept anything given on behalf of our girl to help with her care. If you need our address, just email me. 

As you know, Jerry has been extended for two weeks in his job but still does not have new employment. We entrust this process to St. Joseph. He will walk with Jerry throughout this process and whatever the end results we will continue to trust God for His provision. 

We will also be re-evaluating her equipment needs. Her new wheelchair seat should be here soon and we will need that for transporting her to the Docs as needed. It will also support her for tube feeding. We will also be purchasing a large beanbag for her. This will help with supporting her crooked little back and give her another position to be in during the day. Not sure where we are getting that form yet, but am open to suggestions. 

That's where we are today. Humbled by the outpouring of love and kindness. Humbled by the gift that is our Courtney. Strong in faith, that God will provide what is needed when we need it. As I said in 2011:


"My daughter has taught me that everyone has a purpose, a vocation that is theirs and theirs alone. She has taught me that love means sacrifice and hope is what gets you through the darkest valley's of life. She has taught me that every day is a gift to be respected and lived fully."

And of course always leaving room for a miracle like this one I got on video today.

Blessings,
 

trim.14313213-7257-488C-A922-4115703B35C2 from Mary Lenaburg on Vimeo.
  

Sunday, August 31, 2014

inpatient...


It's 5:15 a.m. and sleep eludes me. Miss Courtney was admitted to Georgetown at 3:30 this a.m. and after running a full course of her IV anti seizure meds, she is still having breakthrough seizures. 

The Docs ain't happy and neither is this Mama. They have not found the right drug combo yet to get them to stop. I am not all that sure they will to be honest. So here I am, next to her bed, no sleep on it's way. 

The plan? I have no idea. Truly. They want to do another EEG study and they will probably change her med protocols, that is after they actually stop the seizures. If they can. Not really seeing a lot of hope for that. 

Pray we do what's best for our girl, no matter the outcome. I just don't want her to suffer. I will do my best to update this space as I can.  

Thanks for holding us in prayer. 

Saturday, August 30, 2014

we need you NOW...

OK my friends...we are out of options...we are taking Miss Courtney into Georgetown ER. She has been cluster seizing since 11:39 a.m. and no amount of medication has been able to stop it. So now we get out the big guns and if be God's will, we will be back home soon. I really need your prayer support. I am at the end of my comfort zone here. 

Thank you 

i will never, ever, ever, ever be ready to let her go...

...but I will when God decides it's time and not one second before. Until then there are songs to sing and snuggles to give.

Go NAVY!! Bring on football season!!

We are four days post surgery and unfortunately Courtney's seizures have returned. She is doing very well otherwise. She is eating well and sleeping well. As I was holding her last night, she went through three grand-mal seizures in a row. It was tough for this Mama to look down at her girl suffering through these nasty seizures and try and keep it together. This morning we have had two grand-mals and many, many of her smaller seizures. 

Jerry and I made some tough choices this week. We decided since we have signed a DNI/DNR for our daughter we will not be running to the ER anymore for seizures. Not unless she is in an intractable seizure that we cannot stop at home. Then we will prayerful consider it. 

Jerry pointed out to me last night as we were discussing what to do, that we needed to make a decision about what we wanted Courtney's final moments to look like. Do we want to be in a hospital surrounded by strangers or here at home surrounded by love at all times? 

We chose love. Always love. 

This doesn't mean that Miss Courtney is going anywhere anytime soon. This just means that as her condition worsens and the seizures come more often, we will be dealing with them here at home as best we can. Now if she shows signs of illness other than neurological, of course we will get her whatever care is necessary to help her. It's just the seizures we are talking about. 

Everyday with our daughter is a gift. We have done what we can do medically to help her. The rest is in God's hands. This does not get any easier to type but I will keep doing it because I believe it. 

Courtney belongs to God. We just get to borrow her for a little while. 

Friday, August 29, 2014

it's all kelly's fault...

So a few weeks ago, Kelly @ This Ain't Lyceum challenged the world to a lip synching contest. Well not the world per say, but Mama's who stay home and care for their littles. In my case, my sweet Courtney. You know we all need to just break out and dance from time to time. Or so I am told. 

Hot off my mega awesome performance at Perry and Melissa's wedding last weekend, I decided that the time was now. For those of you who have witnessed my karaoke prowess, I know that this will not shock you. 

I took her up on the challenge. I did. Not only that, I am in my PJ's. Heaven help those who witness this fierce rendition of "It's All About the Bass". 

**warning** this may cause blindness or frighten kitten or small puppies. There ate two bad words. One is bi*@#$ and the other is sh@*. You may not even notice them for the awesomeness of the dancing will take your breath away or make you want to vomit. Either way...you have been warned. **warning**

Kelly I blame you entirely if the men with the white coats show up at my door. Actually, that sounds nice. I could use the rest. 

Ladies and gentleman...I give you a white girl dancing...who ain't no size two...





trim.9E557184-241D-413F-B466-E2E913C23A6C from Mary Lenaburg on Vimeo.

Thursday, August 28, 2014

coffee for your heart #23 - just do your best with what you've been given...

It has been a month since my last video. So sorry to drop the ball like that. As you know things have been a bit dicey around here with Miss Courtney. She was sleeping this morning so I thought I would take the opportunity to just give a little update and hopefully some encouragement as well. 

Blessings and grace to each and every one of you who stop in and say hello. Know that you are prayed for every day. 

Hugs, 



Coffee for Your Heart #23 - Do Your Best! from Mary Lenaburg on Vimeo.

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