Saturday, May 06, 2006

Day 6: Standing on her own.Rehab: Days 6, 7, and 8

Today is Pediatric Stroke Awareness Day. Ironic, isn't it?

On Thursday morning were were blessed to be transferred to the local Children's Hospital, where we had been waiting for a bed since Monday. Our daughter's spirits improved dramatically once we were settled into the new hospital. After an initial visit with her neurologist, she shocked us all by announcing that she was going to raise her left arm and then doing it. Then she asked if my wife would help her stand. Once she was standing, she asked my wife to let go of her and she stood by herself. She was visibly pleased with her own progress.

Later that night I returned to the hospital with our son so that our family could enjoy our first dinner together since our daughter's accident. After dinner she demonstrated what she had done for my wife earlier in the day: Walking unassisted. It's amazing to think that this little girl had no movement on the left side of her body only six days earlier.

Here is a video clip of her walking and lifting her left arm on Thursday night. You can see how proud she is of herself!

Our daughter has a roommate at the children's hospital, a girl who is her same age and just as precocious who suffered a terrible viral illness that blinded her and left her totally paralyzed. She has been in the hospital for more than a month and is doing remarkably well, having recovered much of her movement and eyesight and seems to be on track for a full recovery. She's a great inspiration to our daughter, who had developed a particular dislike for having her vital signs taken while at the other hospital. One morning, when she was beginning to protest to the nurse trying to take her blood pressure, her little roommate, also having hers taken, said to our daughter: "It will go a lot more quicker if you don't move around so much!" And amazingly, that did the trick for our daughter. Seeing her new friend cope with this regular intrusion has inspired her to do the same.

We had an initial meeting with our daughter's hematologist the day we arrived at the children's hospital. He said that she will need to undergo an extensive array of tests on her brain, blood, and heart as he and the neurologist attempt to rule out underlying conditions that may have caused her stroke and would put her at risk for another one. The hematologist originally wanted to have the tests done on Friday, but the neurologist had them rescheduled for Monday to give our daughter time to adjust to her new environment and not interrupt the steady progress she is making on her rehab.

She had her first PT/OT session on Friday morning and also consulted with a speech pathologist, who found no discernible impairment in her speech, cognition, etc. The PT and OT session consisted of supervised, largely self-directed play. She and her therapists blew bubbles and popped them. They played roly-poly with an oversized gym ball. She kicked a beach ball around the gym. They had her pick up and put down objects using her weak left hand. The therapists encouraged her to play and tried to make a few minor corrections to her movements. After 30 minutes of this play/therapy, she was totally exhausted.

She'll continue to have at least one of these therapy sessions per day as long as she is in the hospital. The hospital also has a play room for games, arts and crafts, etc, an outdoor playground, a school, a library, and a number of interactive displays throughout the facility. Her favorite is a big-screen Tic-Tac-Toe game, which she will play with anyone who will join her.

She continues to make steady progress each day. Today she walks much more steadily, her left knee does not hyperextend nearly as much as it did yesterday, and her left foot does not drop as much. She is gaining strength in her left hand and used both hands to open a marker and a bottle of paint in the play room.

She still has significant weakness on her left side. She's prone to injure herself if we let her walk unassisted because she tries to run, jump, etc. and is not steady on her feet. Aside from falling, she risks injuring her left knee due to the increased strain placed on her ligaments by her weakend leg muscles. She still has much impairment when it comes to fine motor skills.

Nevertheless, we are absolutely thrilled with her recovery to this point. She has far exceeded our expectations, and even those of her caregivers. We aren't in a hurry, we understand how long it typically takes for a child to regain a reasonable level of independence following a stroke. We're committed to helping her succeed in the long run.

We're extraordinarily grateful for the faith, prayers, and support from our many friends and family members to our daughter and the rest of our family. We have felt the Lord speak peace to our souls as we have tried to cope with the difficult events of this week and the uncertainty that the future might hold. In the end, we know that He loves us, that His ways are not our ways, that He giveth and He taketh away. Our hearts ache for our sweet little girl in this time of suffering for her, but we know that the Lord has a purpose in this, and though we do not yet see what it is, we know that His purpose will not fail.

While our daughter seems to be well on her way to recovery, please understand that she is not there yet and still needs our faith and prayers to sustain her. Monday will be a critical and difficult day for her as she undergoes numerous MRI procedures, additional blood draws, and more-invasive tests on her heart. She will be sedated for most of the day and must fast for 8 hours beforehand, which will surely interrupt whatever sense of normalcy she has regained over the past two days in this facility and probably cause her discomfort for several days afterward.

Our greatest hope at this time is that the results of these tests will confirm that she is a healthy little girl who suffered a freak accident and has no underlying health problems or inherent risk of another stroke. If that is not to be the case, we'll do the best we can to manage her condition and continue to treasure every day that we are privileged to spend with her.


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