Hi Everyone,

It’s been a long week but Corey’s pushing everyday! We didn’t have a nurse yesterday so she and I kept busy with therapies, singing, cupcake decorating, keyboarding and a full spa night (the shave off with the girls was cancelled due to their work and night class schedules).

We are singing everyday and I am excited to report that Corey’s speech is improving! The week began with my singing a phrase and leaving off the last word to a familiar song. Corey would recall the missing word and complete the phase. This automatic response is usually controlled by the right side of the brain, while the speech is usually centered in the left. Familiar melodies are triggered on the right side as well.

Diane brought several cards depicting drawings that correlate with functional phrases. Corey was able to say 35 phrases and sang to 20 level one cards (simple single and double syllable words). Here are a few examples; how are you? I am fine. Thank You. I am thirsty. I am hungry. Help me. Where are you going? I miss you. I love you. This is hard work!

We sing varying the notes and tap for each syllable as we sing. We sing 2-3 times then Corey joins in and sings 3-4 times. The tapping is not solely for rhythm. Tapping turns on the brains movement centers which control the tongue and lips, promoting speech. Singing can help rewire both sides of the brain. Suzanne Hanser, the chairwoman for Music Therapy at Berklee College of Music in Boston, recently wrote; Music Therapy can help get limbs moving even when the analytical parts of the brain have trouble sending those messages. Corey is showing us how it’s done.

We had an appointment with a new neurologist today. Burning Mouth Syndrome is one of those mysterious conditions that can disappear as quickly as it appeared. Unfortunately, there is nothing we can do to assist its departure. We can however, go back to the ENT and actively work on the thrush. Corey has already taken an aggressive 4 day regiment of diflucan, 2 weeks of nystatin supplementing with magic mouthwash and is on acidopholus 2x a day. Hopefully the ENT might have an idea how to help her further. We bring Corey’s dry erase board with us so she can communicate not only with us but the Doctor’s as well. When asked how she felt she wrote; “Mouth ow” and when asked why she spits her saliva; “ew” “tastes gross”…that says it all!

The good news is as Corey’s speech is progressing her swallowing is improving. As I mentioned, we made holiday cupcakes this week. She tasted the cake batter and icing; she loved it. She’s even asked to try pudding and is beginning to write that she’s hungry. The interest in food is critical. It tells us that Corey’s getting over her fear of swallowing.
So we get to progress to the next step…next week we will be going to the hospital for her base line swallow study.

The next step; such a simple phrase. There are days that I feel that we should change the word step to mile. There are days I feel like we are at the bottom of a staircase. The top seems to rise beyond our vision. Most days I want to find the escalator but know that as soon as I think we’ve reached the top it will loop back down to the bottom so we get to start again!

When a family begins to walk this path, they are guided by a team of skilled, knowledgeable clinicians. We are in a safe environment knowing that anything our loved one requires is within reaching distance including 24 hour staff. The bubble is frightening but comforting. The time spent in the acute setting allows us to try to adjust to the new scenery, sounds and language. It helps us prepare to take the steps needed to follow the detour sign.

Slowly the bubble begins to leak. The pressure feels overwhelming. Responsibility for decisions and care begin to shift from the trusted clinicians to the unskilled caregiver. Suddenly we are at the helm of what feels like the Titanic. We want progress, information and responses to be immediate terrified that any delay will cause us to crash. A captain will tell you, the larger the vessel the longer the response time. Often we’re steering the largest ship we’ve ever known in the dark. Everyday we question and wonder if our choices are the right ones. We try to find answers in research and educating ourselves on every aspect of what our loved ones are coping with. How did we get here? Who picked us for this role? How are we qualified? Why does it feel like we are always recreating the wheel?

When the bubble bursts, there is a hole in the Out Patient world that is the size of an ocean. Today’s appointment confirmed why I have felt so fragmented. Healthcare has no Out Patient Management Service for families. The caregiver is left to navigate a decentralized system, often swimming against the current, up stream! I was told today that I was the secretary. As I visit Corey’s doctors, I take notes and then report back to the other individuals following her care. There is no clinician that oversees the individual branches. I keep thinking of all the families taking their next steps that are searching for their direction. There needs to be a bridge from the acute setting to homecare. Why isn’t there someone holding onto the rope of our life ring?

Corey I once heard ‘you can’t discover new lands if you refuse to get on the boat’. When you are facing changes, what you know is obviously very comforting. Changing the familiar is when it gets scary. Change without direction, knowledge or skill set is terrifying. But think about it…the changes that occur in our life gives us direction, knowledge and skills that were developed because we had to take that next step. We have to trust that even when we’re thrown into the deep end we’ll find the strength to rise to the top. Look at what we’ve already navigated. Look at how each step has helped us get to where we are today.

This has been one of those weeks that felt like it was a year long. When you said; this is hard work, you were right. We have miles ahead of us and we’ll get there as long as we keep taking the next step. I love you, xoxo