Our day ended Sunday with dinner at Delia's, one of our favorite restaurants. As we were eating a couple sitting across from us went to leave and the husband stopped to say hello to Reagan from his wheelchair. We learned that he fell 25' from a ladder and broke his neck leaving him a quadriplegic. When we shared Reagan's story, he looked at her and said, "I've worked for over 2 years to be strong enough to just sit in this wheelchair. Keep working hard at therapy and you'll see progress too." It was as if God knew we could use a little support to kick off our week. Another amazing witness to remaining positive through adversity.
As if two messages weren't enough, good things come in three's right? We were back at Bed, Bath and Beyond Monday returning our purchase from Sunday and found a little boy with a shaved head sitting on the floor. A little worried he was lost I started talking to him and quickly realized he had a shunt just like Cole. Unfortunately he didn't speak English, but he did want to be friends with Reagan and Cole and started following us around the store. Reagan quickly asked, "why does he have a bump on his head." I quickly said, "Cole does too honey." Again, an onslaught of questions about why he has the bump. As I was washing her hair tonight she said, "mom, is my hair bumpy?" It took me a minute to figure out what she was asking, and when I said no she asked, "but why does Cole have a bump and I don't." So many good questions that are so hard to answer!! I wish Cole was old enough to understand what he and this boy had in common. In speaking with his mom, though, her son has cancer and it's not operable. The shunt is releasing the pressure from the cancer. My heart broke for her imagining how hard her journey must be.
Still soaking in the meaning of all these people we met, we headed back to Charlottesville and had yet another great week at the Kluge Children's Rehabilitation Center! We started Tuesday with our traditional ride around the hallway on the bike. I have found it is an excellent way for Reagan to transition into our week and give her some sense of being in control over what she is doing. She loves riding the bike and has gotten very good at it even though she is pushing with one hand in a cast. We spent much our day Tuesday with Ms. Ruth making chocolate chip cookies. As I've said before, you can make any task take twice as long if you have the "casted one" do all the activities without stepping in to help. That includes opening all cabinets, getting out all the utensils, measuring and pouring all ingredients and cleaning everything while the cookies are baking. Reagan had a great time and although in a much better mood than the previous Tuesday, she was still exhausted by the end of our session.
Johnny took a vacation day Wednesday so he could spend it with us in Charlottesville. Reagan was excited to introduce him to Ms. Sue and she quickly started working on her painting project on the window. She decided she wanted to paint pink and blue butterflies and dragon flies. She also had a great time cleaning up her mess. Given she can only carry objects with her left hand, she took several trips from the hallway into the kitchen to clean up the brushes, towels, paints and stool. With the increased range of motion from her Botox we have spent a great deal of time working on her pincher grasp and trying to build up the muscles in her hand and wrist to maintain the functionality that she now has.
Thursday was another great day. Reagan spent time playing a game where she made faces, she played another game where she dressed momma, daddy and baby bear, she played outside in the new sand box and practiced her balance on the big platform swing inside. The large platform swing has been a staple for Reagan for several years in therapy. Not only does she love to swing, it forces her to prop herself with her left arm and weight bear on her hand. It also forces her to hold onto the rope with her left hand. She had a lot of fun doing "crazy shake" with Ms. Sue but did ask to go take a nap several times throughout our session.
We also celebrated an anniversary Wednesday - it was the four year anniversary of Reagan's brain surgery. Although we have had several very difficult days as a family since her surgery, this day ranks as one of the worst. It's hard not to relive the feelings of that day and honestly I want to relive them. I want to remember how hard that day was. How nauseous I felt. How helpless and hopeless we felt watching her being wheeled into the operating room. She had stitches soaked in blood from just behind her hairline on her forehead in an arc around her head to below her ear. She had an IV in every limb and one coming out of her diaper. Wires, leads and a feeding tube. She had abrasions on her forehead from the clamps holding her still during surgery. She had burns from the EEG leads from the last 20 days. Her head was so swollen her right ear was almost 45 degrees on the side of her head. Such vivid memories even after four years. I want to remember that day so that every day I thank God for being where we are today. I don't ever want to take for granted the person who she has become. I will never forget the night we got her MRI results and the neurologist said, "I"m sorry, but we think she has schizencephaly." When we asked what that meant she said, "we don't expect she will ever be able to walk, talk or have any cognitive function." We lived with that expectation for almost two days. Every dream for her shattered. Every excitement for her future crushed. No first day of school. No graduation. No first date. No best friend. No wedding. All the things as a mom you think about as you grow this precious baby in your belly for 40 weeks. We lived with some degree of those fears for almost two years. It's hard to explain that feeling...but it's one that Johnny and I will never forget. We feel so blessed to be where we are today and we thank God for the amazing medical team who has cared for her. We thank God for choosing to help her through the surgery. We thank God for giving her the personality to persist even through the frustration she feels some days. And I thank God for the amazing partnership that Johnny and I have to walk this journey hand in hand. Every time Reagan looks up and says, "mom, I can't do that with lefty. Will you help me?" I say, "honey, we're a team. You. Me. Daddy and Cole. You will never be on your own - we're all in this together." Thanks to each of you for being part of the Bischoff team - your support has been unending and it helps us remember there is good in the world. My prayers tonight go out to all the families we know who have had those dreams shattered and continue to persist through the difficult days they face on their journey.
Still soaking in the meaning of all these people we met, we headed back to Charlottesville and had yet another great week at the Kluge Children's Rehabilitation Center! We started Tuesday with our traditional ride around the hallway on the bike. I have found it is an excellent way for Reagan to transition into our week and give her some sense of being in control over what she is doing. She loves riding the bike and has gotten very good at it even though she is pushing with one hand in a cast. We spent much our day Tuesday with Ms. Ruth making chocolate chip cookies. As I've said before, you can make any task take twice as long if you have the "casted one" do all the activities without stepping in to help. That includes opening all cabinets, getting out all the utensils, measuring and pouring all ingredients and cleaning everything while the cookies are baking. Reagan had a great time and although in a much better mood than the previous Tuesday, she was still exhausted by the end of our session.
We were settled into bed Tuesday night at the hotel when Daddy called and asked Reagan if she wanted a good night hug. And SURPRISE! He was at our hotel door! She was very confused when I opened the door and he was on the phone and in her room at the same time, but she was super excited and couldn't wait to tell him all about her day.
Johnny took a vacation day Wednesday so he could spend it with us in Charlottesville. Reagan was excited to introduce him to Ms. Sue and she quickly started working on her painting project on the window. She decided she wanted to paint pink and blue butterflies and dragon flies. She also had a great time cleaning up her mess. Given she can only carry objects with her left hand, she took several trips from the hallway into the kitchen to clean up the brushes, towels, paints and stool. With the increased range of motion from her Botox we have spent a great deal of time working on her pincher grasp and trying to build up the muscles in her hand and wrist to maintain the functionality that she now has.
After therapy Wednesday morning we met with the study coordinator and doctor for the CIMT Research Study that UVA and VA Tech are conducting. UVA is looking for 50 candidates with hemiplagia (limited function of one side) to participate in the study over the next few years and after meeting with us, they said Reagan is an excellent candidate. There are four treatment groups and one control group for this research. The research will attempt to provide data that supports whether longer exposure to casting increases the effectiveness of the therapy. There are many theories on this around the world and within the United States. Reagan was randomly assigned to the control group. We were very happy with this outcome but it does mean we have a lot of decisions to make. First, it means she will only receive her current therapy at home for the next six months. During that time there will be several assessments to measure her progress. At the end of her participation in the study (after 6 months) she is given the opportunity to receive one of the treatments that the other groups received. The four options are as follows:
- Option 1 = part time splint for 2.5 hrs/day 3 days/week for 4 weeks
- Option 2 = part time splint for 3 hrs/day 5 days/week for 4 weeks
- Option 3 = full time cast for 2.5 hrs/day 3 days/week for 4 weeks
- Option 4 = full time cast for 3 hrs/day 5 days/week for 4 weeks
Johnny and I will be discussing the alternatives and which option may be the best fit for Reagan and the family. Participation in the study also means that Reagan will not be able to have any more Botox treatments while she is participating in the study. Given we haven't even started discussing whether we will do the injections again, we are willing to accept this condition of participation.
After our appointment we went to lunch and then treated Reagan to seeing the Disney movie Planes. Although it sounds like she was relaxing and not getting therapy time don't you worry! We made her eat the popcorn by herself and she did a great job with lefty!! After the movie we took a quick trip down to the Pedestrian Mall and Reagan rode the carousel. Then it was back to the hotel for dinner in bed and an early night with lights out.
Thursday was another great day. Reagan spent time playing a game where she made faces, she played another game where she dressed momma, daddy and baby bear, she played outside in the new sand box and practiced her balance on the big platform swing inside. The large platform swing has been a staple for Reagan for several years in therapy. Not only does she love to swing, it forces her to prop herself with her left arm and weight bear on her hand. It also forces her to hold onto the rope with her left hand. She had a lot of fun doing "crazy shake" with Ms. Sue but did ask to go take a nap several times throughout our session.
We also celebrated an anniversary Wednesday - it was the four year anniversary of Reagan's brain surgery. Although we have had several very difficult days as a family since her surgery, this day ranks as one of the worst. It's hard not to relive the feelings of that day and honestly I want to relive them. I want to remember how hard that day was. How nauseous I felt. How helpless and hopeless we felt watching her being wheeled into the operating room. She had stitches soaked in blood from just behind her hairline on her forehead in an arc around her head to below her ear. She had an IV in every limb and one coming out of her diaper. Wires, leads and a feeding tube. She had abrasions on her forehead from the clamps holding her still during surgery. She had burns from the EEG leads from the last 20 days. Her head was so swollen her right ear was almost 45 degrees on the side of her head. Such vivid memories even after four years. I want to remember that day so that every day I thank God for being where we are today. I don't ever want to take for granted the person who she has become. I will never forget the night we got her MRI results and the neurologist said, "I"m sorry, but we think she has schizencephaly." When we asked what that meant she said, "we don't expect she will ever be able to walk, talk or have any cognitive function." We lived with that expectation for almost two days. Every dream for her shattered. Every excitement for her future crushed. No first day of school. No graduation. No first date. No best friend. No wedding. All the things as a mom you think about as you grow this precious baby in your belly for 40 weeks. We lived with some degree of those fears for almost two years. It's hard to explain that feeling...but it's one that Johnny and I will never forget. We feel so blessed to be where we are today and we thank God for the amazing medical team who has cared for her. We thank God for choosing to help her through the surgery. We thank God for giving her the personality to persist even through the frustration she feels some days. And I thank God for the amazing partnership that Johnny and I have to walk this journey hand in hand. Every time Reagan looks up and says, "mom, I can't do that with lefty. Will you help me?" I say, "honey, we're a team. You. Me. Daddy and Cole. You will never be on your own - we're all in this together." Thanks to each of you for being part of the Bischoff team - your support has been unending and it helps us remember there is good in the world. My prayers tonight go out to all the families we know who have had those dreams shattered and continue to persist through the difficult days they face on their journey. 
Just love reading your family updates: happy to hear Reagan is doing so well with her therapy. What a trooper. And I love all of those angels that God put before you recently: how wonderful to meet such extraordinary people!
ReplyDeleteThe Bischoff family continues to rock on!