Attack of Ataxia!

This has certainly been a trying week for our family. Lillian came down with what Shaun and I thought was just simple virus last Wendesday, but she was much worse by the weekend so on Saturday we took her to the After Hours Clinic on Acton road. There we were reassured that it was just a virus and Lillian should be on the mend in few days. We were still concerned because we had not seen her walk more than a few steps in the past three days, but had just thought it was due to her not feeling well. However on Sunday night Lillian started doing something that Shaun and I have not seen her do in almost three months- she started crawling. I just started crying because I knew that something was very wrong at that point.

We called our pediatrician on Monday morning and we saw him at 4:00 that afternoon. Our pediatrician had just seen Lillian three weeks ago for her one-year check up and he was very concerned about the regression in her walking. After a physical exam and some blood work I sat in the waiting room with Lillian sitting in my lap, her head resting on my chest, and waited for the verdict. Dr. Walley came out and sat down beside me-we were the only ones left in the doctor's office at that time- and he started going over the results with me. He went on and on about white blood cells and lymphocytes, and then as if he had been hiding it from me he pulled out a little white piece of paper from under his leg and handed it to me. I could only focus on one word, "Oncology". He told me that we needed to be at the Pediatric Oncologist at Children's Hospital at 8:00 am the next day. I didn't know what to think or how to react. I just said thank you and walked out with my daughter asleep on my shoulder, and this little white piece of paper in my hand that said "Pediatric Oncology- 8:00 am Clinic #8".

Shaun and I went the appointment the next day and met a wonderful oncologist who was so wonderful to our sweet girl. They took blood and did a couple of x-rays, and of course preformed another physical exam. After awhile the doctor came in and told us that every test they had run was pointing toward Leukemia. A little piece of Shaun and I just died inside when those words came out of his mouth. He told us that he would need to confirm it with a bone marrow biopsy, and that we would know for sure within the hour. We walked with Lillian to the room were they would do the biopsy and Shaun held her until the sedation set in and she was asleep. Then we were lead to an area for us to wait for Lillian and the results. First they brought us our little girl, who was still a little out of it, and then forty minutes later that wonderful doctor came around the corner smiling with a big thumbs up. NO LEUKEMIA! We were so relieved and so thankful, but were still left with questions of why she was not walking much anymore.

Today we were sent to see a pediatric orthopedic to see if maybe there was some kind of infection in her hips or the disks in her back. I had been forewarned that while this particular orthopedic was suppose to be the best in his field, he however did not have the best bedside manner. He examined Lillian and tried to get her to do a few different things and then he rolled back in his chair and lend against the wall and just starred at her for a little bit. Then he told us in these exact words, "There is nothing wrong her orthopedically, but that girl is not normal". Hey, I was warned about the bedside manner thing but I was still taken back by his bluntness. He told that we needed to go straight to over to Children's Hospital to see a neurologist, and then sent his nurse out of the room to make the call that he was sending us that way. Shaun and I were happy that things were moving so quickly, but at the same time the urgency concerned us.

The neurologist saw us right away, and after what I felt like was a very quick exam had an answer for us. Lillian has Acute Cerebellar Ataxia. It is basically a viral infection that has settled in the cerebellum in the brain. We were admitted to Children's Hospital so they could do some more test to make sure that there were not other serious infections. After we were admitted they did a lumbar puncture and a cat scan and everything looked clear. The neurologist told Shaun and I that hopefully we would be going home tomorrow afternoon or Friday morning. And that her gross motor skills could return to normal anywhere from a couple of weeks to a couple of months. We are just so thankful that after three days of absolute panic, and three doctors we have finally figured out what was wrong with our sweet baby.

Also, I wanted to say thank you to everyone who has kept Lillian in their prayers over this past week. Those prayers were defiantly felt by Shaun and I, and we are so very thankful for all of the wonderful people in our lives who love and care about our little girl.