Monday, March 21, 2016

Breathing a huge sigh of relief and now able to tell the rest of the story

Today was the day that Y. had her initial appointment with the orthopedic doctor to address some of her mobility issues. I am so happy to say that there is really nothing but good news. Some really good news. But to fully appreciate the good news, you need to hear a part of the back story that you have been missing.

Way back almost a year ago, when we were finally able to ask to look at Y.'s file because we finally received approval to adopt two children, we were thrown for a bit of a loop. We knew that cerebral palsy was the possible diagnosis, but I wondered why such a cute girl with a mild to moderate special need was still sitting on the shared list. Cute females without serious delays or serious medical needs don't just sit around. There had to be something else going on. I received the file and started to look through it. Everything looked fine until I got to the page with the results of an (uncooperative) CT scan. In the results was buried one little word. OK, the word itself wasn't so little. It was leukoencephalopathy. Specifically, the white matter seen on the scan indicated a possible leukoencephalopathy. It's not a common medical term and so I looked it up. There were several different types, but each of them boiled down to the same thing: degenerative fatal brain disease.

I will admit to having a moment or two of not being able to breath.

This was why her file sat on the shared list. This was why she was still waiting for a family. This was scary. If indeed this is what she had, there was nothing to be done. There is no cure, just a short or long (depending on type) decline of cognitive brain function ending in death. It is not a pretty word. It is not a pretty diagnosis.

J. and I talked. We decided this was our child regardless of diagnosis. A friend summed it up best. Is it better for a child to die in an orphanage or surrounded by the love of a family. We went forward. After talking with a neurologist, it seemed as though the chances of her not having this diagnosis were in our favor. She had shown no decline in function in the years since the CT scan, CT scans are not generally able to show a leukoencephalopathy, and she was still alive. In the more aggressive types, death happens fairly quickly after diagnosis.

But we didn't share the news. We didn't want her labelled as the 'dying child.' We didn't want to be held up as saints for having fallen in love with a child with a fatal diagnosis. These things were especially true if the diagnosis turned out to be incorrect. If it was correct, then that news would travel fast enough.

Can you guess why I'm telling all of you this now? Yes, it's because seeing the doctor today, we feel 99% sure (we will still need an MRI to officially rule it out) that the leukoencephalopathy diagnosis is wrong. What Y. has is spastic diplegia. A fancy sounding name for a type of cerebral palsy which affects the muscles and makes them tight. It is actually the most common form of cerebral palsy and the doctor seemed pleased with how much function Y. has. He believes that the confusion about what was going on with her CT scan is because white matter in the brain has a part in the CP diagnosis. It is not uncommon for the white matter to look different and the English word for both diagnoses is similar, due to the reliance on Greek words for roots. The white matter showing signs of CP became white matter causing a fatal brain disease. Essentially, Y. is too functional to have the bad one, but extremely typical for the CP one.

Even though we were pretty sure the diagnosis would be incorrect, it still hung over our heads. It is with great relief and great thankfulness that we can stop having this hovering in the background. It also confirms that this child is so truly meant to be our daughter. Due to the need for having to ask for waivers because of our family income, we stand a greater chance of being approved for a child with significant special needs. It's just how it is. Y.'s are just not that serious. I'm sad that she had to wait for so long for us to find her, but am thankful that she is now a part of our family. She fits in so well. There is so much that we are discovering that she loves that is also a big part of our family's life. The whole thing just has the hand of God all over it.

We now need to get braces made and we will be getting forearm crutches to see if they help her. There will also be some physical therapy to help with strength and exercises to see if the tightness can be stretched a bit. There is also the possibility of some surgery if the physical therapy can't do enough with the tightness. But this is all doable. The doctor was pleased with how much of her legs looked and seemed very positive.

Thanks be to God.


Kara Norick said...

Praise God indeed! Kai was diagnosed with Cranioschisis, which is also lethal and praise be to God, we have ruled that out and he has been given the "Crainal/Facial clefting" diagnoses instead. I think of and pray for your beautiful family often. God bless

to china and back said...

I hope she loves the forearm crutches as much as our son does. He can get around like lightening with the help of those things!

Kelly said...

What wonderful news!

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