Katie and Her Continuing Journey

Katie needs more than one update to bring up to date! I will go start from the last two weeks and next update hopefully fill in the last four months. The last two weeks have been the most eventful to say the least, since the first two weeks! Two weeks ago Katie was coming down with a virus, but was in perfect health otherwise- happy, healthy, graduated from her regular therapy and doing awesome and as typical as she could be. Then Monday came and she slept all day and Tuesday she slept most of the day. Katie could not physically walk more than two steps without falling. She was so weak she could barely walk, let alone play Monday through Wednesday. Wednesday the Doctor saw her and we just agreed she was wiped out by the virus. I brought up Katie barely using her left side and we just brushed over it that she was just weak overall and it was more apparent on her already weaker side. The problem was as days passed it wasn't getting any better. I contacted Katie's neurologist and he said to update him in three days and go in immediately if her weakness got worse. In the next two days it didn't get worse, but it didn't get better. Last Sunday night Katie started crying inconsolably and I knew it was time to go to the Emergency Room. In 7 hours they took chest x-rays to rule out pneumonia, catheter for urine sample to rule out urinary track infection, CT Scan to rule out another stroke, hydrocephalus or shunt failure, blood tests to rule out many known strands of viruses and other blood causes, and respiratory swab to rule out flu and RSV and they successfully ruled out EVERYTHING they tested for! Katie had a minor ear infection and possibly a touch of pneumonia, so they admitted her to the hospital to give her antibiotics and monitor her. None of the Doctors could explain her left side weakness other than maybe weakness from whatever virus she did have. We left the hospital comforted it was not another stroke and her shunt was working properly!
Her pediatrician scheduled the EEG at her check up on Thursday when Katie spaced out and took a few seconds to respond. It could be an Absent seizure, which are seizures that are not convulsing but involve a blank stare and non-responsiveness for several seconds.
So, now it is a week after I took her to the ER and she is healthy again, a small occasional cough but overall normal health, but she still is not using her left arm. She can move her left arm if you ask her to raise it up, out, or give 10. But she is not moving her hand or fingers at all. It is absolutely heart wrenching to watch her use her right fingers to move her left fingers. She does not open her hand at all. Two weeks ago she loved to play with Legos, but now she uses her teeth to grip the block to take them apart and can't hold the blocks to play, stack and build. She has adapted to lay on the couch and rest the Itouch on her left forearm to play games on the Itouch. She will hang from the bars on the swing set, but only with one hand, where two weeks ago she would hold on with both hands and swing her feet up above her head. She will not push up on both arms and can't catch herself as she is falling. Katie has adapted in ways that are amazing, but to see her regress to where her left arm was over two years ago before therapy is painful and frustrating and so discouraging. We worked so hard, she worked so hard, so many therapy appointments and so much hard work... gone.
But my HOPE comes from the Lord, He healed her once He can do it again!! So we wait and we pray!
Tomorrow we will see the therapists who saw three weeks ago and they will see her regression. Tuesday we get an EEG to rule out any seizure activity. For the EEG test they will measure her brain for any seizure activity, it is a sleep-deprived test where the 24 hour period before the test she can have half her normal amount of sleep. So, pray tomorrow as I am not sure how I will keep her up to midnight and keep her awake from 5am until her test at 10am.  Wednesday we follow up with her neurologist. The next Tuesday we see her ophthalmologist, which was a scheduled routine visit about her vision, but now I have some concerns of changes in her vision.
So, now we continue to pray!! PRAY hard!! Pray for Katie, her left side, her vision, her unexplained weakness, for answers to what happened and why, for her EEG and pray for wisdom for her wonderful Doctors and us! THANK YOU!!
You are a wonderful gift to me, to Katie!! Thank you so much for all your love, support and prayers!!
YOU are part of Katie's MIRACLE!!!!