In August Danielle started her first year of Preschool at Bowman Woods, she is a Little Lion now! This was QUITE the step for Mom and Dad, not only was our little girl growing up, but we were also allowing her to enter into a whole new world filled with new people and most of all, new caregivers. With careful planning put into place Danielle began her first year of school and it went without a hitch. The school has many of the same pieces of equipment there for her like we have at home which makes for great transition and for her to feel comfortable. They have the same Special Tomato chair we have at home, as well as the same walker and also a Tumble Form chair so she can sit on the floor with her peers. She has 3 Grant Wood therapists on her team which come in and each visit her once per week plus we are still continuing therapy at Witwer with our 3 most fabulous therapists there as well. Danielle also has her own personal 'aid' caregiver at school too. Ms. Vette goes everywhere with Danielle, cares for her and makes sure she has exactly what she needs during her school day. She feeds Danielle and makes sure to give her a break from the other kids if she needs it. She is proving tho to handle all of her new friends with no qualms whatsoever. She LOVES school and most of all she loves her new friends and her friends love her too! All of the kids are SO attentive to Danielle and so are the other parents. We always get greeted with big 'hi's' when we arrive and big 'see you later's' when it is time to go. Danielle's face just lights up when some of her bestest buddies talk to her, she is so smart and knows exactly who they are too!
School has brought so much out of Danielle that she has been trying to communicate to us. It is amazing each week to watch her in therapy show us new things that she knows. From colors, to animal's to shapes and even writing the letter 'D' with very minimal assistance, she amazes us daily. We are so proud of our little Pre-Schooler and are so excited about what great things she has in store for her at school.
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We continue tho to watch Danielle's progress very close. School has been a big factor in us watching her Cognitive skill set and to see her moving forward with such huge strides has been amazing. Although it has taken the past several months for her Educator's at school to 'figure' Danielle out, we are still seeing tremendous progress and we really attribute some of that to her fantastic Witwer therapists for challenging Danielle each week and giving her that opportunity to show us what she knows. While her Cognitive skill's are rapidly increasing, we have been really monitoring her Fine Motor skills as well.
6 months ago at our regular Neurosurgery follow-up, part of her protocol is MRI scans to monitor change. We have seen good brain growth in the top part of Danielle's brain, which goes hand in hand with the Cognitive progress we are seeing. While we are seeing Fine Motor progress, it isn't as rapid as one would have thought. Her scan did confirm a large cavity of fluid in the 4th Ventricle in the back of her brain. This fluid has been there for a very long time, since she was approx 2 months old. Now she does have a shunt on the right side and it is doing its job of draining the fluid from the top part of her brain, but it is important to know it does not control the fluid level from the back of her brain. This large cavity has not increased nor decreased in size since she was approx 2 months of age. Good that it is not increasing, yet a little discouraging that it has not decreased either. Our world renown Neurosurgeon asked us to really evaluate Danielle over the next 6 months to see if her progress was what we would expect. That put a LOT of pressure on Mom and Dad, but only the best for our little girl, and this was very important.
December 21st, one day before Brad's birthday, and the same day we were getting in the car to travel 13 hours to PA for Christmas, we had a follow-up at the U, which included another MRI. Brad and I had really done some soul searching asking ourselves if Danielle's Fine Motor progress was what we wanted and should expect. She was progressing, but sadly we had to report to the doctor our findings. He knew by looking at her, we didn't need to say a thing. Her head control is about the same, lacking, and her posture is better but still not sitting longer than 30 seconds unassisted, taking steps yes, but no more than 4 at a time. The news was devastating, yet we want the best for our daughter and we want her future to be bright and we want to KNOW inside our hearts that we have given her every single opportunity possible to have the best, life, ever.
Surgery is the only hope. Our doctor is the BEST in the world and he suggested he place another shunt on her left side to drain the fluid from the base of her brain...... we accepted.
A pit is in our stomach as this is serious. There are risks, serious risks, after all it is Brain Surgery that will last 4-5 hours in the Operating Room at the University. She will be in the hospital for one week post op, and cannot attend school or daycare for at least 8 weeks, possibly longer. February 1st 2013 will mark the day that our little girls life will move forward.....
Stay tuned as we embark on this journey of endless possibility for our little girl. We have her under the care of the very best Neurosurgeon in the world, and I am not just saying that either. I will share his name another time. While there are serious risks, we believe in our heart that Danielle will begin to see the ever so bright future that is waiting for her, and this is the beginning of more endless possibility for her. It will be a marathon, not a sprint. We are ever so ready to Move Forward....
We love you SO much Danielle. There isn't anything that your Daddy or I wouldn't do for you. We want you to know we are doing this for you, we are putting our hearts in the hands of someone who wants for you as we do. We love you sweetie, you are our world, we will be beside you every single step of the way, forward progress has begun.
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