Shriner’s

A very long day at Shriner’s today…we had a 2:15 appointment, and we finally saw the Dr. at 4:30. I learned many things from him in the first few minutes, which were kind of exciting. I had planned this long speech about how I am trying to balance Abbie’s total recovery. Turns out, he spoke the words for me.

Our PT (who waited that whole long time with us!) and I explained how variable Abbie’s tone can be. Sometimes she is limp as a noodle, able to relax and use her body. Other times she is tight, stiff, and locked up. Dr. O turned to our PT and said, “It’s the cortex override. That’s what make kids like Abbie so unique. They are impossible to predict, giving prognoses is just really taking guesses.” “Cortex override” means that Abbie’s cortex, or the white matter in her brain, is able to override the spasticity in her muscles, this is what normal brains do all the time without us thinking about it. Yet another professional telling us about something that Abbie’s brain can do!!

Dr. O explained that children who are injured during their childhoods are much different than children who are born with brain challenges. Their spasticity is often variable, like Abbie’s, and it makes treatment decisions more difficult. He nodded his head as I explained that I have been trying to strike the balance between her orthopedic needs and her overall recovery…not willing to drug her with Baclofen because it hid her potential, not willing to do serial Botox because I think it would interfere with the healing process that is ongiong. I was very pleasantly surprised that we seemed to be coming from the same direction.

Alas, the day was not over. We headed to the X-ray waiting room where I smiled about the cortex override…Abbie’s brain IS healing, and this is yet another indicator! We had films taken of Abbie’s spine, which is fine, and her hips, which are not. The right hip is still about 80% out of the socket so that hasn’t changed since last year. What has changed, however, is the socket that the bone fits into. The angle on it is changing, which leads to outcomes and options that are worst, worse, and bad.

If we leave things alone the hip may totally dislocate. This would not be all bad, but could result in spine issues as Abbie sits on hips that are uneven. What would be worse is a hip that is almost out, but not quite. As it hits the socket improperly, both the cup and the ball become disfigured and can never fit together again. This can also be quite painful. He described one surgery where they just remove the ball at the top of the femur, which can result in very floppy hips, obviously, and other problems. Lastly, we went over the surgery he has described to us in the past…removing about 1″ from each femur, repositioning the balls and using a blade to secure it to each socket. He will also now have to do some reshaping of the right socket.

We asked many, many questions, and he showed me the stainless steel hardware. It is a 5-hour procedure, and this is NOT what we want to do, but after looking at her films, we do not see any option other than surgery at this point. We are hoping to schedule it in mid-September. She will be in a chest to calf cast for 3-4 weeks post-op, so it will be a very trying time for her, and for all of us. Please, join with us in beginning to pray now that all would go smoothly, that we would get the results we are hoping for, and that her pain would be as minimal as possible.

I am still in an emotional freeze on this issue, just moving forward with doing what is necessary, not allowing myself to think about how I feel about it. I will be relying heavily on God’s grace to get us through this, especially the painful post-op part. I can’t escape the thought that I will be making her suffer. I asked Ray and our PT, “What did I do wrong? None of my other near-drowning friends are dealing with this.”

Ray said, “Whoa, stop! Many of the other kids were younger when they were hurt and haven’t grown as much. Others have chosen to do Baclofen and Botox and things we didn’t really do…what we have gained is Abbie’s cognition, awareness, communication..who knows how much of that we would’ve gotten if we’d made other choices.” Our PT agreed, and this did make me feel better. There are no right answers, although at times it can feel like there are many wrong ones.

Please pray for our family, as I sense that this next 6 weeks could be a long period of holding our breath. Abbie was injured so suddenly, and all the following surgeries happened quickly, that I’ve been spared a prolonged season of dread until now.

I must tell you I smiled, though, today, knowing that we are not facing this alone, and will be covered by your prayers. That means more than I can ever say!

Finally, a picture!! My friend Sandra took this in our yard yesterday. I suppose it’s way past time to post a new family picture, since in the last one I am taller than Chase (back, right) and Kyle (back, left). Matthew is in the blue shirt, and RJ is in red. I also wanted to capture what feels like a split-second opportunity when no one in our family has braces! Abbie was grinning as we sat down, but her smiles come and go so quickly that we didn’t get a picture of one.

Abbie has been doing great in important ways while being challenged in others. She has needed quite a bit of oxygen this week, which prevented us from going to PT/OT on Thursday and Speech clinic on Friday..a big bummer for my social girl. But, as I always suspect when she needs oxygen without having a junky chest, it was just more healing.

On Thursday I showed Genevieve Abbie’s shape bucket that we are using to reinforce her tactile and visual identification of shapes. Later, I walked in to find them working with the shapes, but Genevieve was laughing through tears. Obviously, I asked why, and she said, “Oh! I just got off the phone with my auntie telling her about this, and now I can tell you! Abbie is tracking with her eyes!!” Not that I doubt Genevieve, but we have been waiting so long for this, that I didn’t want to get excited prematurely. So, they showed me! First Abbie followed the red triangle up, then down very easily. Following to the right and left was harder, and a little slower, but she did it!!

Her left ankle was injured three weeks ago, and since then her standing program has been virtually nonexistant. I wanted to get her up again, so we tried on Friday. I put her at about 70 degrees inclination, and she did great for twenty minutes. I was happy with this, but wanted to see how she would do if we took her to 80 degrees. As soon as we increased the angle, she sighed deeply as if saying, “Oh, thank you!! It feels so good to stand up!” She ended up staying on her feet for 25 minutes, which was amazing given that she hasn’t been standing at all lately.

This coming week has many important appointments. The one I am praying the hardest about comes tomorrow, as we head to Shriner’s. I know we will get new films of Abbie’s hips and spine, and will surely discuss the possible hip surgery. I am so conflicted. I know that orthopedically she probably does need the surgery, but I am looking at her total recovery. She has a fragile brain architecture and is gaining new things each day it seems. I don’t know if I want to jeopardize that with a lengthy surgery (i.e. lots of anesthesia), inserting metal into her body, dealing with post-op pain (and the meds to control it), as well as the prolonged recovery. Please pray for wisdom in abundance!

On Wednesday we will meet with her case managers to update her care plan. I am hoping this will be a relatively uneventful meeting. Thursday will be our first official IEP meeting at the school. Again, I am hopeful that we have a good feel for how this meeting will go, so it should not be a confrontation or struggle, just one step in the process.

Overall, these are good days with Abbie being very present and happy most of the time. As we ease into August, and her birthday nears there is so much to be thankful for. I am not postponing joy any more — as in waiting for her to be healed to be happy. There is joy (and enjoyment) in each day for us now, some days it wears a bit of a disguise, but we’ve become more skilled at finding it in the shadows.

True Strength

An emotional rollercoaster fortnight has given me some profound lessons. The teacher I am in awe of this evening is my dear friend, Remle. I hope that those of you who are journeying with Abbie have been blessed, as I have, to follow Remle and her husband Jim as they travelled a narrow, uphill path that led Jim to Heaven on July 2.

On Tuesday, July 17th, Jim’s 39th birthday, there was a celebration service at the same spot where Jim and Remle were wed over ten years ago. Under palms swaying in the breeze, overlooking Jim’s beloved ocean, I saw the glory of God made manifest more radiantly than I have ever witnessed with my eyes. My precious friend, now a young widow and single parent, glowed in her white dress and haku lei. Not only did she summon the strength to welcome each of us with a smile and hug, but she danced in praise of the God she is depending on to “never let go”…as she raised her arms and face to heaven during her hula, I observed the truest worship I have ever seen, that which flows from a broken but trusting heart.

True strength is not always brutish power covered in armor and sweat, sometimes true strength is noble grace, clothed in white and ornamented with flowers. Rem, if you are reading this I am exquisitely blessed to call you sister and friend, and am so terribly proud of you.

Abbie is well, and in the midst of another cycle of healing. Like an alarm clock, complete with bell ringing, Abbie’s body “goes off” at 9pm each night. She goes from breathing normally to needing 3 or 4 liters of oxygen within minutes, and continues this for about 2 hours. This is related to her “Triple Warmer” meridian, which is the first cycle we really noted her experience back in February. It seems that her body goes through cycles in most of the meridians and then circles back to the beginning again, perhaps to begin another round of deeper healing. Who knows? That is just my guess.

My mom, who we expected to be here through the end of July, had to leave yesterday to tend to my father who is enough under the weather that his doctor told him not to come to Hawaii this Friday as planned. Please pray that he would recover quickly! We had three other houseguests (Linda & Adrienne Carver, and Brittany Currie) depart yesterday as well…so if you are in Los Alamos there are a lot of hugs on the way via Linda!! Our house is feeling oversized and quiet tonight!

Abbie lost yet another tooth last night…one of what I called her “pirate smile teeth”, her oversized canines that were a bit dracula-like. Whenever I saw them in her smile, I knew she was up to no good, she was being my pirate princess. She’s thrilled about racking up more Tooth Fairy Treasure, but I have mixed feeling about seeing another bit of my old Abbie transition away from me. The sadness only flickers briefly however, because she is so happy these days, and her big girl, or rather old-almost-toothless-lady smile brightens my day too much to gaze in the rear view mirror for very long.

Assessment Whirwind

We had four straight days of assessments for Abbie this week, and not a second to catch our breath. It was a stressful time for all of us, especially Abbie, who is very aware of when she is being “tested” and wants badly to succeed. This week reconfirmed that my life verse is becoming, “None of these things shall move me.”

We started out with the school PT visiting us on Tuesday, while the school OT, special services coordinator and our home school principal came to the house on Wednesday. Thursday took us to the hospital for a swallow test, and PT/OT. We returned home to immediately meet with two teachers. Friday we had Abbie’s program at the University, which the school speech therapist observed.

It was exhausting to educate, educate, educate and answer questions all week. But, Thursday afternoon brought a conversation that I will long remember. One of the teachers saw Abbie, truly saw her. She took many words out of my weary mouth as she turned to the other teacher and said,
“Abbie is not like any of the other kids we have ever worked with. She is not mentally retarded, she is just motor-challenged. Her desire to eavesdrop on conversation, her ability to respond to conversations both directed to her and those about her indicate a very high cognitive level. We must take care how we talk about her and around her.” I was already stunned, but then she continued, “We have got to give her time to respond, without interrupting with additional prompting or encouragement. So often we dismiss kids’ potential when all they need is additional time.” Yes, yes yes!!


After I had described Abbie’s two switch communication system, the teacher brought up Stephen Hawking — a man whose brilliance is only shared because of a communication system. She likened Abbie to him in that they are both intact minds trapped in bodies that do not allow free expression. I could not believe what I was hearing! She asked me if I’d ever been accused of reading more into Abbie’s actions or abilities than was truly there. I responded that I try to be very cautious about that, always wanting to get validation from a therapist or other observer. She told me that I shouldn’t worry about that because I was able to give several concrete examples for every capability of Abbie’s that I described. That was encouraging to hear.

I smiled while closing the door behind them. For the first time in three years, someone SAW Abbie, without me being the stage mother, describing her in detail. What a victory for her!!

The swallow test on Thursday was a little less victorious. It turned out about as I’d suspected. Abbie wants to swallow, responds quickly when something is placed in her mouth, and tries valiantly…but, her body is not quite working for her yet. Her tongue goes up and down very well, but we need more back and forth motion. Her challenge right now is moving food from the front of her mouth to the back, so her swallow is delayed. By the time she can swallow, much saliva has seeped down the back of her throat and into her trachea. As I told Abbie, she just needs a little more swallowing practice. Her speech therapists told me not to be too discouraged by the results, and that overall she is doing very well. They thought “needs more practice” was a good summation. Please just pray for “forward and back, forward and back” movement.

I have had much fun with Abbie this week, who is in a truly great mood most of the time. She has relished her new game of “kick ball”, where while sitting in her chair she asks for the ball with her switch and then kicks it away with her feet. We’ve gotten more than our quota of smiles and dimples, and overall life is very good.

But…I do pray that none of these things shall move me…negative test results shall not move me to despair, positive test results shall not move me to complacency; defeat shall not move me to concession, victory shall not move me to self-reliance.

Have a blessed week!

Sunshine

Friday came, full of cheer, and washed away the darkness in my heart. Fridays are a favorite day because they are Abbie’s “school day” during the summer. Perhaps because I’d been in such a deep hole, Abbie’s light seemed especially brilliant that morning.

The sun shone brightly as we headed out to “the beach” — an activity center set up outside that includes digging in sand. I love so much that the students create playful learning experiences. Abbie dug through the sand to find shapes which she would then identify for us. She did great at the circles, but then also called a square a circle. I compared the square and circle and we talked about corners and edges, and then we tried again. This time she identified both of the squares. I got to watch her learn!! And, she picked it up quite quickly.

Then, we were on to her favorite…the ball pit. I sit in it with her and we use the balls to practice identifying colors. She was as fast as I have ever seen her, even when we tried to trick her. These kind of days are so sweet for me…it feels good to smile. We then got to throw water balloons, which unfortunately were ultra-strong and bounced like balls…but Abbie used a gripper hand to do it herself. Again, the students finding a way to allow Abbie to do as much herself as possible. She loved the gripper, and also used it to do her hall moniter duty picking up trash and moving activity cards to the “completed” side of the chart.

But, the best part of the day happened when I was not there (of course). I had run up the hill to pick up the twins from their summer program and missed about 30 minutes of activity. During this time they introduced the “feeling box” to Abbie, which contained shapes she could pick up but not look at. She was not at all keen to put her hand into a box of unknowns, which I can understand. However, they would place shapes in her hand and she could correctly identify the shape just based on how it felt in her hand. By this I was truly amazed…I had no idea she was capable of this!

We are still having difficult afternoons. Between 3 and 5 pm Abbie is generally unhappy, with prolonged bouts of crying/whining common. Because it keeps happening at the same time, and resolving at the same time it has all the markings of a meridian-related pattern. The encouraging news is that between these hours the bladder meridian is in high phase, and the brain lies on this circuit. So, while it still pains my heart deeply to hear and watch her suffer, I am profoundly comforted by the belief that this is a sign of healing and progress for her.

Tonight I told her that she has a swallowing test on July 12th, and that we need to practice. I got an immediate reaction, a huge smile and some great swallows. She is all about acing tests. I mentioned that we also have a “body test” on July 30 (a visit to the orthopedic surgeon at Shriner’s), so that we need to practice having loose, stretchy muscles, and a strong body…we’ll see if the Teacher’s Pet part of Abbie helps us in this instance!

My mom arrived on Wednesday to spend a month with us. It will be a treat to have another set of hands, which so far have been kept quite busy by the boys…playing cribbage and cards!

Please continue to pray for our school decision. The principal of our home school wants to meet with us before we even start the process, which is curious but will give me a chance to ask some key questions. Several families have mentioned that they are not even allowed on campus during the school day, including when their children are receiving therapy. If I cannot be present to work with and learn from the therapists, this process isn’t even worth starting.

As I close, I am looking at Abbie, and her beauty leaves me wordless. I am so very, very blessed!