“I hope, and I will always hope. And I will never cease hoping. When it is clear that there is no longer any reason to hope, then I will hope all the more.” St Claude de la Colombere
Hope is my middle name.
Life is always an adventure when you have a child with special needs. Dull and boring is something I dream about but have never really experienced since Miss Courtney came into my world.
As many of you know, these past few weeks have been challenging ones for me and my girl. Her VNS has been re-calibrated and the device is set at it’s maximum settings. Still the seizures come like a thief in the night robbing her of breath and exhausting her with each pass. She takes three different medications that constantly attack her liver and kidney’s to try and keep the seizures at bay to no avail.
This daughter of mine is a warrior princess. She has fought since she was five weeks old and I have fought right along with her. We have tried medication after medication, therapies galore, and finally the VNS which was really our last straw. Until now, we have just had to deal with the seizures and the damage that the multiple moments of lack of oxygen have done to our girl. Until now, she has been is fairly good health with her lungs, heart, kidneys and liver being nice and strong fighting the fight.
The most terrifying words a parent can here in a doctor’s office is “I’m sorry. There is nothing else that we can do. Now we wait and see.”
Wednesday we met her her neurology team and received some hard news. It appears that the VNS is no longer helping our girl and in fact it may actually be harming her. It is set at the highest settings and still she seizes. She can’t withstand the high electrical output forever. The Doc has given us two weeks to see if there is any significant reduction in seizures. If not then we will have to take it down a setting to protect her heart. She is also taking the maximum doses of three different anti-seizure meds. Still the seizures come.
Now things get dicey. Miss Courtney has started to have trouble in other areas. After walking in her gait trainer, sitting on her own or completing any task that requires her to exert large amounts of energy, she becomes pale and her breathing becomes labored which indicates some pulmonary difficulties. It’s taking more time for her to recover and she often falls asleep for a bit after exercising. She is also aspirating her own saliva directly into her lungs. She can no longer can protect her own airway with any kind of thin fluid. I am unsure how much longer she will be able to continue eating two meals per day by mouth.
She is also struggling with constipation and has been for months now. Her blood gases are beginning to be affected with her ammonia level rising ever so slightly, causing her to sleep more. Her weight comes and goes even though the calorie intake hasen’t changed which means she is not absorbing things well. She is also anemic.
Then there is her severely compromised immune system. She has missed almost 60 days of school this year, the most ever in her lifetime. Every time she is healthy enough to return, someone comes in with a cough or cold and three days later we’re back in the doctors office and taking another round of antibiotics. She just can’t fight off illness as well as she used to.
So the Doc ordered a ton of blood tests that have revealed her kidneys and liver are beginning to show some distress. Not to the level that lands us in the hospital at this moment but it is indeed a game changer. It means she is having trouble keeping up with all the stress that the VNS and meds are creating in her body. It’s not just about the seizures anymore. The tests have shown some permanent damage that cannot be reversed. Now other systems are being affected and those are not as easily dealt with.
According to our team of physicians this is not something that she can “come back” from. Her body is tired and the different systems are showing it. We have reached the end of the treatment road. There is nothing else they can do for her nuerologicaly. As for the other medical challenges, we will face them one at a time.
We have spent the last two days adjusting her diet to assist her with absorption and constipation issues. I pray these changes will work and help relieve some of the immediate distress on her gastrointestinal system. Miss Courtney will be undergoing further testing in the coming weeks to assist the doctors in creating the best plan to help her to have the best life possible for however long God so grants us the gift of loving her.
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
We have also made the decision to have her graduate from school this June, a year early. She can no longer take the stress of a full day at school. It’s just too difficult for her. This will also allow us as a family to have positive closure with all the beautiful souls that have loved our daughter every day for the last eight years. We will celebrate this day as we do every milestone Miss Courtney has achieved, with JOY and GRATITUDE!! If her health permits she will attend school for as many days as she can for the remainder of the year before graduation and coming home.
These changes will allow her to rest and take away some of the stress on her and on us as caregivers. I want her to have the best life possible. If that means we are semi-homebound to allow her to be healthier longer, than so be it. I will do whatever is necessary to protect her and prolong her life.
Only God knows what will be in the near future and there is too much for me to do to waste my time wondering why this is happening now. There’s painting and sewing and all sorts of home improvement projects that need to be complete before she is home full-time. Painting party anyone??
This is the beginning of a long and winding road. Courtney has outlived all predictions by over a decade. She has proven the physicians wrong time and time again. God will reveal His plan for our daughter in His time. She will fight and so will her Mama and Daddy. Death is not something we are afraid of. He will tell me when it’s time to let her go. Until then, life changes but our love for our daughter does not. She may not be able to do as much as she used to. She may not be able to go as many places, but we will be here with her. Reading to her, doing therapy with her, loving her through every seizure and illness that she has yet to face.
“I can do all things through Christ which strengthens me.”Philippians 4:13
To all of you who have emailed, commented on Facebook and Twitter, thank you for always being there to lift us up in prayer. I can never truly express what those prayers mean to all of us on a daily basis. Some days they are what save us from completely losing it.
We will always seek JOY. We will trust that HIS plan is the only one that matters. We will LOVE Miss Courtney unceasingly and without hesitation. We will fight as long as she fights.
She is not alone. I am not alone. God is present in all things at all times. This is just another bend in the road of life. Thanks for walking it with us.
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