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  • Tarah OSullivan

Vivian Update..Mother’s Day Evening

I am normally full of words… words that help make sense of things that have happened…words that bring understanding….words that I feel make things more clear.


This weekend I am still trying to find those words…


I can explain what happened.


I can explain what we now have learned can happen.


I can explain how it makes me feel…


But I cant fully make sense of steps forward yet…the path isn’t clear.


Sometimes when we go through suffering, an event that we didn’t see coming, it adds another depth to the suffering.


Trying to process the emotions is like trying to learn to swim again in a larger, deeper ocean…


We are sitting with Father to give comfort, strength, and understanding…


Understanding if it is His will for us to understand.


I am thankful that He always brings comfort and strength first…


 

Friday, Eric and I were getting ready to go on a date.  This past six months we have tried to make a commitment to make “dates” more consistent.  Nothing elaborate, more about just intentional time to step outside the house and connect.


Some weeks we go for a 30 min walk in the neighborhood.  Some weeks we have God sent babysitters that come sit with the kids for a few hours so we can go eat dinner together.  Every week is a gift, and we hold date night very open handed.  Some weeks it doesn’t work, some weeks we just can’t make it work. 


Some weeks it takes a turn.


Friday as we were getting pizza ordered for the kids and I was getting some work items done at the kitchen table, Vivian had a seizure.  Vivian and Drake have seizures daily.  As much as I wish this wasn’t apart of their “baseline” and “healthy” …it is.


Vivian arches multiple times a day, and they both have one to two grand mal seizures a day.  The strength and intensity of the seizures can vary a lot depending on what their body is going through.


Without all the diet, supplements, cbd oil, meds, therapies they can have up to 200 seizures a day…everyday….for days that will not stop…until you get their system back in line.  We do the best we can with our current knowledge and understanding of the disease.  That is the life of a child living with NKH…a rare, fatal disease without treatment.


Vivian and Drake’s seizures have been more intense the last few days.  Right now, with more activities and kids being kids, there is just more sickness floating around.  Nothing too series for a healthy system, but it always effects D and V differently.  They have increased seizures activity.


Their seizures have not increased, surprisingly, but the intensity has.


Now, when a strong seizure comes…they hold their breath, and their little bodies twist and turn as their muscle contract.   They are pulled in different postures as they fight to come out of it, and we fight to get them to breathe.


When we noticed Vivian starting her seizure, Eric quickly went to pick her up.  He helped hold her head so she would not choke on her saliva, and also rubbed her back.  All we can do is support her until she is able to “unlock” her brain and take a breath.


She went through the pattern of symptoms, and Eric was able to help guide her as best he could.  When she came out of the seizure he mentioned that her right leg had bent.


Vivian is different than Drake in her disease presentation.  Vivian started to “arch” when she was almost a year old.  Her body has an extreme response to noise and it startles her into a stiffening pattern, much differently than a seizure.


Drake never experienced this, still to this day, he doesn’t present this way.  Same diagnosis, same confirmed mutations…similar but extremely different.


The reason we were all concerned about Vivian bending her right leg is for almost two years, her right leg has been hyper-extended at the knee. It is twisted causing a misalignment of the joint not allowing it to bend.


We have been working with Shriner’s discussing exploratory surgeries to try to realign the knee, as well as weekly working with our physical therapist and orthotist.  We create supportive braces and stretching.  And bracing and stretching has been good, and surgery can help, but if the same neurological patterns keep happening then the muscles will ultimately pull the joint back out of place…


or worse..


After, Eric laid Vivian back down I called our PT to come check her knee.  After last weekend with Drake, and thinking of all the things that can now happen, the sickness I felt in my stomach couldn’t leave it alone.


About 20 minutes later our PT was at the house, looking at her knee, examining the new range of motion that gave us all an uneasy feeling. She had a small oval swelling above the joint that felt very new.  No brushing, no initial swelling other than the small place, but she was very painful now when the knee was moved.


After the PT left, we called a friend that had an X-ray machine in his office to see if we could scan her leg for a deeper check.  It was now after hours and our only option was to take her to the emergency room which takes hours due to being weekends.


We met our precious friend that came to open his office and we all held our breath as we reviewed the X-rays…


The scans began to blur as the tears clouded my vision...


I closed my eyes as the sickness in my stomach began to build and I fought to swallow so I wouldn't throw up…


The knee was misaligned…and right above the knee…right where Drake’s leg fractured…there it was…the indication that we had a second confirmed break.  A buckle fracture in the femur of our precious Vivian.


Just like the journey we went on with Drake….just 5 days before….


I went to the bathroom as Eric loaded Vivian into the car.  I needed to my the tears as we ready our minds for another hospitalization….another battle ahead.


Eric dropped me at the house to relieve our babysitter, grab a few meds, and then he went straight to the ER with Vivian.


The kids met us with the same tears and heaviness.


I found it harder this time….harder to find the words to console…I found myself shaking me head side to side gently, and my crackling words pushed through the tears trying to find answers.


“I don’t know why baby….I don’t know why…it is going to be ok, we are going to go get her help, just like bubby, please just stay strong, it is going to be fine,” I would answer.


I know I was saying it… I could hear myself say it….but inside I could feel the glass splitting…like cracking glass. The veins running faster than I could push them back down…


I was so proud of the bigs. They immediately fought through the pain and fear and started gathering things in their own way.  Birk helped me get tubes pulled up for food for Vivian, and HK started gathering scripture cards off the wall and putting them in a bag to take to the hospital.


I don’t think I can express how humbling it was to watch them…God is doing amazing things through them…and He deserves all the glory. 


All the good in them, and our home is Him.  We are just so grateful He is who He says He is.


 

We are going to be fine…Vivian is going to be fine… I kept repeating in my head.  Focus on the next step.  Focus on getting things together. 


Get out the phone again…


Call the support team again…


Pack the hospital bags and medicines….


Again…


My mom got to the house and I handed off all that needed to be done for Drake, and showed her the new way to lift him to change him as to be careful with his new cast.  I quickly gathered all Vivian’s food and medicines and I started to the hospital.


My mind was numb…if I am honest I am thankful God gives calmness when there is major event to process.  Trying to take all of it in at one time is too much.


Just focus on the next step, focus on the next breath…


I got to the ER and got back to Eric and Vivian.  The orthopedic team was in to speak as they had already confirmed the buckle fracture.


We discussed the plans to intubate for surgery first thing in the morning, possible pins to stabilize her bones, and a hard cast to allow for six weeks of healing.


I am listening to all the procedures and trying to settle my mind as all the questions and facts are rushing in….”Why”, I found myself asking them.


“Why is this happening to their bones…..why are their bones breaking…..why are we here again, in less than a week….why, I don’t understand…we have had so many seizures in their little bodies over the years….why now…what are missing?”


The doctor answered, “unfortunately…it is not uncommon to see.  When a child does not weight bear and the bones are weakened, and you add seizures that pull on the bones in unnatural muscle pattern…it is more common than you may think….”


“But you don’t understand”, I said desperately trying to get them to see past the break. "We have been in a great place, such health and calmness for almost a year and a half now…same robust diet, same medicines, same regiment, and they have been gaining….growing… why all the sudden?  6 weeks ago Vivian had thyroid swelling, we tested..labs were off, as we are waiting to see endocrinologist, her iron plummets resulting in a blood transfusion, last week Drake had a femur break… and now…now just 5 days later Vivian has a seizure and it contracts her body so strongly that it breaks her femur?….Sir, please, we are missing something…we are missing something….”


He nicely assured me that they could only help with the bone placement…but that he did agree it was odd to have two with broken femurs in a week…


He shifted his feet, and a look came in his eye..he looked away as he started to speak.


He kindly explained that they would have to have social services speak to us… standard protocol… but the paper work would need to be noted when a case comes in with breaks so close together…



I felt the air leave me….



I held my breath and quietly answered…”yes sir, we understand…we understand wanting to make sure the children are protected…we will speak to anyone you need us to….


but…


will you please help us…please run some labs….let’s try to see if something is off, some levels that are off so we can see if something is causing this while we are here?”


He agreed.  We signed all the papers for the surgery in the am as they left to start the process of admittance for a room upstairs.


As he shut the door….


I felt the crushing weight come.  I sat down in the chair beside Vivian’s bed as to support my legs….


I couldn’t speak….all I felt was pain….crushing pain….pain that I didn’t know how to handle yet…pain that didn’t have words….


Eric and I looked at each other and all we could do was silently console each other by looking at each other.  I watched as the tears fell down our faces.


I couldn’t find words…all that was there was hurting…all I could muster was,


“Eric….


I know God loves us….


I know He does….


I KNOW He does…


I just don’t understand….


I don’t understand right now….”


We caught our breath and steadied our feet.  We spoke with the very nice social worker and he was extremely kind.  We answered all the questions and he assured us all was well, and strictly protocol.  We thanked him for what he does, as I can’t imagine the cases he has to interview.  He left and we began the long night of getting Vivian transported upstairs, a line placed in her arm for fluids, and pre-op discussions that started at 6 am.



She went back for surgery around 10 am the next morning and two pins were placed in her right knee, and a hard pink cast that she will need to wear for the next six weeks to give the bones time to heal.


 

I couldn’t sleep that night….


I am normally so clear on things I need to dive into to help the kids.  In the past, God has given me so much insight on those sleepless hospital nights.  We go in uncertain and scared, we come out strengthened on a new direction, a new path to follow, a new biochemistry trail to pursue….


This time…


I needed to just sit with him if I am honest…


I have never been more thankful that He is a God of comfort…We played His word aloud as we watched the words on the pages of our bible.  Seeking ways to process all the pain, all the emotions, through what His word says about suffering.



I have heard of seizures causing bones to break….a fate I never thought would be ours.  But with all the events and all that we saw with Vivian this time, we think this is probably what happened with Drake last week.


So what do we do from here….


We continue to not try to understand…not keep asking why.  My mind wants to fight to find the “why” so I can predict the painful events coming next…not get so blindsided next time… protect them from the pain coming.…


Hold back the overwhelming force of this disease…


But today…


yesterday….


tomorrow……..


I needed Jesus.


We need Jesus to help make sense of all this.  Give us wisdom on how to move forward…


A lot have texted and written asking how can you help.


Thank you.


Thank you for loving us…thank you for praying for Vivian, Drake, and our family.


Honestly….I need you to earnestly pray.


Pray with us for wisdom on how to help them…pray for seizures to stop coming….pray for their bones to strengthen….pray for labs to show bread crumbs to follow….


Pray for God to send someone…and if that someone is you…reach out. We are always looking for help.  If you see something, if God leads you to offer up something, if you want to help.


Please….step forward. 


Help us.


I am trying not to think …but to choose to trust Him in these moments of unknown.


We know that this too, in time, will make sense.  This too will be for our babies’ good and His ultimate glory…


We won’t loose our hope and faith in Him.  He is too great and too mighty to not worship.. even now.


And right now…I am ok not having my questions answered by Father tonight.  I just want to hold Him, and allow the Great God Almighty to hold us…


We fall on our knees and we worship Him…

And we will continue to worship Him and pray in His time, He will show us the next step.







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