We’ll See…

Rosie was just a tiny baby when she came into our lives. Her mom was on her way to the mission to deliver her. She made it as far as the gate and gave birth on the dusty road. Rosie’s umbilical cord became infected with the dirt and she contracted Tetanus. 90% of children with tetanus die.

We were blessed because we had a medical team from Jacksonville, IL in Haiti at the time. Somehow we found the medication that she needed. But it would be a tough 3 months for little Rosie. Unable to open her mouth or fingers – unable to move ANY part of her body – she laid lifeless in an incubator inside my bedroom. The medical team was flying back to the states and at 10 days old –  Rosie was left entirely in my hands. I was SO nervous. She had a feeding tube and IV’s. She needed 24-hour care. The medicine caused her to have explosive diarrhea but you couldn’t actually put a diaper on her because you couldn’t open her legs to put one on. It was like her whole body was frozen.  No doubt she was the sickest child I had ever taken care of.

After 3 months – the feeding tube came out and I was able to start moving her body. We had therapists living in Haiti at that time and they worked daily with her trying to get her to open her hands and start moving her limbs.

Then around 6 months old Rosie got Cerebral Malaria. She had 103-104 temperature for nearly 5 weeks straight. She had 8-10 seizures a day. We tested her for everything. Her malaria tests came back negative so we treated her for everything else. Luckily the same team that was there when she was born – got their hospital to provide free care for Rosie. So we flew her out on an Emergency Visa and she was thoroughly tested and treated in Jacksonville, IL.

                      

 

Every advancement that Rosie made – we had to start over. At 9 months old she couldn’t even hold up her head. We had to teach her to sit again, to hold her bottle, to roll-over, to swallow her food, etc.

                  

            

Then around 11 months old Rosie got Typhoid

Seriously? I remember thinking to myself – how in the world can one child survive all that she’s had?  No doubt she continued to beat the odds.

         

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Rosie was diagnosed with Sensory Integration Disorder when she was 3 years old. We began tailoring our teachings to that effect.

We knew that Rosie was a little slower than the other girls. She often struggles to get her words out. We noticed she writes her letters backwards, sometimes she can count to 100 and the next day she can’t count to 30. She can wiz through a book in the morning and in the afternoon she struggles to pronounce the same words she knew by heart already. There were behavior issues too. Issues with attachment. But we figured it was all related to the Sensory Integration Disorder.

Beth (our homeschool teacher) has been spending a lot of time with Rosie – working one-on-one. Little by little she’s advancing but we felt like it was time to get her tested again – just so we could continue to tailor our teachings.

We contacted a good friend of ours at Cincinnati Children’s Hospital and they graciously made room on their schedule for Rosie to be tested. She had 2 3-hour appointments this last week. We get the “official” results next week.

The doctor went ahead and called us in on Tuesday to go over some of his initial findings. It was at that moment that our hearts were troubled. These were his preliminary findings:

Rosie has irreversible brain damage on the front and back of the right side of her brain. The right side of the brain controls the left side of the body. To give you an example of what that looks like:

You know those little peg games at Cracker Barrel? They’re shaped like a triangle and you have one peg jump another until there’s only one left. If you tell Rosie to use her right hand – she can move a peg in 39 seconds. The average is 45 seconds. So that’s really good. But if you put the peg in her left hand – it takes her 90 seconds.

So I asked him – we just need to work with the left side of her body? So we can make is stronger and quicker? He told us that it’s not a matter of her needing therapy. This is brain damage. You can’t change it. It is what it is.

He explained that there will be a point in Rosie’s life where she will not be able to absorb any more learning. We don’t know when that point is – could be soon or could be a few years from now. But that we are to prepare ourselves now that she will never reach her full potential.

If that weren’t discouraging enough – he continued to explain something else even more troublesome. Those moments where Rosie seems like a “deer in the headlights” or “distracted”- it’s because her brain is having these constant little seizures. Because these seizures are not visible – parents often don’t know their children are experiencing them until one day they pass out and end up in a coma.

These seizures are dangerous and kill brain cells. We need to do an EEG (which is $700.00 we don’t have) so we can figure out what type of medication she needs. Without the medication and treatment – It is very possible that Rosie could end up in a coma.

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AWWWWWWWWWWWWWWW!!! Even now that I’ve had a few days to absorb it I am still crying. My mind immediately drifts  –  What If…..What If…..What If…..

I was talking with Beth – giving her the results of the tests and she sent me the following: