1yr; Day 429 – swallow test for solid food
Hi Everyone,
Poor Corey is still having a rough ride. We had to cancel speech and PT today to schedule an appointment with the Ear, Nose and Throat Specialist. Corey was up at 4am with more mouth issues. Dr. W was in surgery so we saw Dr. D. I was happy to get her in today! Thrush is nasty! Dr. D explained that it’s similar to a virus and unfortunately it has to run its course. Dr. D has his own version of Magic Mouthwash that we are hoping will help with Corey’s pain. His cocktail contains Nystatin among other ingredients that may help not only soothe her tongue but heal some of the swelling around the taste buds. Corey finds relief biting on a face towel. Dr. D asked that we change it from cotton terrycloth to a simple cotton cloth. Fortunately, I had one of JohnPaul’s undershirts at home. I cut the shirt into squares and Corey seems to find it more comfortable. We will follow up in two weeks unless the new mouthwash doesn’t help in which case he’ll see her right away for Plan D, E, F, G…we’ll keep trying until we get rid of this thing!
In the meantime, Dr. D sees no reason to postpone the swallow study tomorrow. Corey will take a baseline study at the hospital. From my understanding, this will be the procedure.
The study is done in the radiology department. We will meet Diane at the Hospital along with the radiologist, radiology technician and a respiratory technician. Corey will stay in her wheelchair next to an x-ray machine. Diane will give her different drinks (with varied consistencies) mixed with barium. Barium makes the liquid show up on the x-ray. Barium is not harmful and won’t stay in her body for too long. She will excrete it naturally. The x-ray machine is only turned on as she swallows so she won’t get too much radiation.
Diane will ask her to do different things during the test. She may even try soft foods with Corey along with thin and thick liquids. She will give Corey a variation of small and large portions. She will be asked to move her head in different positions but always asked to tuck her chin to her chest as she swallows so she doesn’t choke. The test might be recorded so it can be compared to future studies.
What happens after the test? We’ll find out together…I’m assuming that we’ll get the results immediately, we’ll be counseled as to what foods and liquids are the safest for Corey to begin trying, as well as how to eat them and we may start swallowing therapy.
This is another very big step for Corey’s progress! Keep your fingers crossed that she sleeps through the night and wakes up feeling well enough to keep the appointment. Happy dreams…I hope! xoxo
1yr; Day 428 – rollercoaster
Hi Everyone,
Have you ever been to an amusement park that bragged to have the ultimate roller coaster? They have great names like shockwave, boomerang, twister, renegade or fireball. In a matter of minutes the ride will twist, turn, spin, dip, drop suddenly then rise to enter a black out tunnel. Your excited, terrified, anxious, nauseous and out of breath waiting for the brakes and when it comes to a sudden stop, it’s not over…you get to ride again!
Our roller coaster’s name is Corey Beattie! It’s been a weekend of high High’s and low Low’s. Friday night after the show, Corey was exhausted but unfortunately was physically sick from the ride home initiated by her medications. She was over stimulated and it took her a while to settle down and truly fall asleep. Saturday was the event hangover. She was very tired but managed to work through the morning then crashed for the afternoon and evening. Saturday through today our ride took some twists and severe dips. Corey was up at 3am as we worked through the night helping her with her mouth pain. She was moaning and complaining more than I’ve ever heard her to date. As the day progressed she was on an upswing. In fact, she jumped the rails!
Late afternoon she wrote that she was hungry. She asked for Vanilla Pudding. She ate a significant amount; about a quarter of a Jello Snack Pack. I encouraged her to tell me when she was ready for more by verbally asking for each taste along with signing “More”. She did very well communicating especially her final request; when asked if she was ready she spoke her response “one more” as she held up her pointer finger to show me the number. To hear her not only ask for what she wanted but to make the clear connection to ask, tell the specific request and follow through with the analytical thought process is HUGE!
After her snack, we brought her into the living room to workout on the matte. As we played soccer and volleyball, she looked across the room and pointed to the standing frame. She wanted to stand up. This surprised me because of the extreme discomfort Corey had expressed not only from this morning but most of yesterday as well. My philosophy is ‘if she has an interest, “No” is not in our vocabulary’. She took the lead and I followed. The payoff; Corey set a new record to report…19 minutes in the standing frame! She more than doubled her last reported time.
Corey our life these days is exactly like a roller coaster. You wait in line for what seems like forever. Finally you get on. It starts off fast and furious. There is a rush of emotions and feelings you’ve never known before. Just when you’re getting adjusted to the experience, you whirl around a sharp corner and everything changes. The ride slows down, than gets fast again, faster than the minute before. You climb up, fall down, it gets dark, then bright, then dark and bright again. The wind and speed take your breath, water sprays your face, it’s cold, then hot, then perfectly comfortable then everything changes again. You get tired. You get excited. You never know what exactly is next yet you learn to enjoy and deal with whatever comes along the next curve or straightaway.
This is no amusement park ride. It’s our life. It’s real, it’s here, it’s now, and it is filled with highs and lows. It’s difficult and wonderful. You continue to surprise me. Just when I least expect it, you jump the rails and show me something new. Our ultimate ride is all about the possibilities. You show me what determination, patience and tenacity can achieve. I’m so proud of you.
I do have a small request I’d like you to consider. You and I have always paired up for the dare devil rides in every park we’ve ever gone to. The bungee hamster ball ride and the double shot parachute drop to name a few. Don’t misunderstand me; I’m still signed on for the thriller rides, but could we try the Ferris wheel soon?
Just think about it…. xoxo
1yr; 2 months – Hijacked
HIJACKED
Hello everyone! My mother tried to bribe me with groceries and a ride back to Philly to write the page tonight. I refused explaining that I already told all of my jokes today. Then she threw in washing/drying/FOLDING my laundry, sooo here I am. But word of caution, this is the bottom of the barrel.
If you hadn’t heard, we had a fantastic night. Dan Orlando, local legend, preformed at the Kennett Flash, and I opened for him. SOLD OUT show, a room filled with friends, family, music and laughs.
I really admire Dan for his creativity as a composer and his courage to sing in public. The closest I’ve ever come to singing in public has been in the shower with the window open. (you’re welcome Philadelphia) The following are 7 reasons why I could never be a musician:
1. I get car sick. Long rides on the tour bus would be painful.
2. I’m allergic to sequins, pleather, and spandex – limiting costume availability.
3. Underpants make me uncomfortable. If dedicated fans threw them on stage I wouldn’t be able to handle it.
4. Fire makes me anxious, pyrotechnics are out. Lasers too.
5. Head banging gives me vertigo and unmanageable hair.
6. I don’t play any musical instruments (well)
7. More then 30 minutes on stage and I begin to sweat like a man. Not attractive.
But seriously, I’m so thankful to Dan Orlando, his family, and the Flash for organizing this event. Corey had a blast! She was dancing, tapping her toes, and smiling the whole time. When we got home it took her about 3 minutes to pass out. Little miss party pants, you know her, she can’t pass up a good party. What a fun night, I was so happy to be a part of it.
Sleep tight.
xoxo Caitlin
1yr; Day 425 – at the helm of the titanic
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
1yr; Day 423 – music and speech
Hi Everyone,
We had a few good moments today and Corey had a more successful Speech session. We shared the details of our Karaoke evening with Diane. I also informed her of an article and case study I found on Music Therapy. I’ve begun to sing several phrases and familiar childhood songs with Corey. As we sing, Corey taps her hand to the word and in some cases, syllable per word. There actually is a 6 week course specifically designed for this type of therapy. Diane has used Melodic Intonations as a means to help stroke victims regain their ability to speak. She sang a functional phrase to Corey and then Corey would tap and sing the phrase back to Diane. With each trial, Corey’s voice became louder; each word had increased clarity as well as increased accuracy in the formation of the words. It was very exciting. I am going to continue to study this to work with Corey and we will be utilizing this in future sessions with Diane.
Overall, her PT and OT sessions also improved in comparison to yesterday. Corey did become agitated for several hours this afternoon; however, as soon as I broke out the cake mix she was all smiles! We made holiday cupcakes. Tomorrow we will be decorating them using the inspiration from Hello Cupcake. I will add a photo if they turn out well.
Speaking of tomorrow, its November 30th…for those of you participating in No Shave November, tomorrow is the big shave off! For those of you that don’t remember the story from last year or haven’t heard of this tradition yet allow me to explain. Corey was a member of a competitive cheerleading team (ESPN style cheering not sideline cheering). Corey created No Shave November inspired by the Phillies not shaving during the playoff season; a superstitious ritual to win the World Series. The girls wouldn’t shave their legs for the month of November to prepare for what they hoped would be a winning competition season beginning the first weekend in December. Practice became a bit “prickly” so the girls would go to the gym with baseball tube socks (so they could continue working with each other and not touch hairy legs especially as they practiced their pyramids).
November 30th began with just a few girls, but as traditions typically catch on it quickly grew to almost a dozen of the senior girls shaving at our house…ALL in the same bathroom! This tradition continued last year in Corey’s honor as a fundraiser. Each participant arrived with razor, cream, towel and bucket to the gym and paid $5/leg to shave. Tomorrow is the 2nd annual Shave off for Corey but this year its back at our house and Corey will be participating. Thank goodness we have the handicapped shower and larger bathroom! We’ll celebrate the new season with clean legs and cupcakes.
There are several participants that won’t be able to join us; however, they’ve recently sent “before” photographs including several guy friends that have been sporting longer hair and beards. The guys have even managed to get their new dorm mates to join them as well. We hope they will be sending us the “after” shots. Corey may have inspired a new fundraising ritual. Susan G. Koman has a 60 mile walk…Corey has No Shave November!
Corey there were many difficult moments today but there were a few more good moments than there was yesterday. You did a great job working through them and we even managed to laugh a little today. Sleep well; tomorrow is a busy day with therapy, cake decorating, singing and the big shave off! The sheets will feel great tomorrow night!! Happy dreams, xoxo
1yr; Day 422
Hi Everyone,
Tonight both Corey and I are two tired women! She had a very rough day/night. We have to figure out how to help her with her mouth. There has got to be a solution that will relieve her pain. At the moment, we are told that it is a combination of thrush (which we can not seem to get rid of) and a neurological issue that will improve as Corey continues to improve and therefore beyond our control to heal; except for applying topical antidotes that give temporary relief.
Her discomfort is so severe it is impeding the progress of her speaking and eating. Diane, ST, is going to reach out to the professionals within her circle and we will reach out as well. We have an appointment with a new Neurologist this Thursday. I’m hoping he may have a solution we can try. I will also be reaching out to the Ear, Nose and Throat doctor again.
Corey not only pushed through ST but PT as well. Once she made it through her stretches, she sat on the side of the matte to play our version of kickball and volleyball. Corey also stood for 6 minutes with the walker. She is improving each time we practice shifting her weight, alternately releasing her knees, and taking a small step forward/back with her right foot. Today she had a first. We assisted her left leg but Gillian could feel the muscles of her left leg contract to attempt the same step as the right. She stepped left, held her body weight through the shift, we assisted her to step back and she returned to a neutral stance. We repeated this exercise throughout the 6 minutes. It was very exciting!
I’m grateful that I was able to get her settled this evening. It’s amazing the “tricks” I can come up with to distract her from her pain. We wrote her Christmas List, what she’d like to get JohnPaul and Caitlin (sorry no hints they read the page too), played hangman and tic-tac-toe. Thank goodness Corey’s teacher brought us a surprise last week that was the winning trick for tonight. If anyone wants to win America’s Funniest Home Videos, you should set up a hidden camera to watch me sing/dance with a Karaoke machine! Corey had no choice but be distracted by my “talent”. They say that Music soothes the soul and Laughter is the best medicine? Well watching my Vegas show certainly qualifies for the latter! Either way Corey seemed to finally settle down to fall asleep.
Speaking of music and laughter, we are looking forward to this Friday night! Dan Orlando, one of my many “adopted” sons, is an accomplished musician. I refer to him as a modern day Billy Joel. He is incredibly talented and recently graduated from the Cincinnati Conservatory of Music (notice I wrote adopted…his talent came from his “other” mother). Dan will be headlining a benefit concert for Corey which will highlight his latest solo compositions. Every headliner needs an opening act and Dan has chosen Caitlin! She will be sharing her comedic insights for 30 minutes. The concert will be held locally at The Flash in Kennett Square from 8-10pm. For those of you interested, I think there may be some tickets available but it’s close to being sold out! http://www.kennettflash.org/tickets.html.
Keep your fingers crossed, if Corey feels well enough, she will be attending the concert. I can’t think of any therapy or medication that would help her more right now!
Corey I will guarantee, Dan is a MUCH better singer than I am and we already know that all Caitlin has to do is walk into a room and she makes you feel better. Sleep well honey. Just a few more days…xoxo
1yr; Day 421 – Have a little faith
Hi Everyone,
We hope you all had a great Thanksgiving weekend. JohnPaul and Caitlin came home Wednesday night and stayed through Friday. Corey loves when they’re home. We had a quiet Thanksgiving Day watching movies and cooking. Corey did not enjoy the yams as much as she thought she would but she LOVED the mashed potatoes and gravy! She doesn’t eat more than what fits on the tip of a spoon but I know she enjoyed each taste.
My HS reunion was a blast. I was fortunate to reconnect with many of my old friends. It’s always surprising when you don’t see someone for 20 or 30 years but when you begin to catch up it’s as if you saw each other the day before…my mother always said that was the sign of true friendship. That statement was accurate this weekend.
While I was away, Corey and our nurses had fun together. Corey increased her time in the standing frame to 8 minutes and 45 seconds. She also had her friends visit on Saturday and Sunday before they all headed back to college. The best news is they will be back for Christmas break in two weeks.
Prior to the accident, Corey and I would spend Sunday nights either watching TV or a movie. Whichever she picked she would get up an hour into the show and announce she was going to bed. Every time I would exclaim, “What”! “You make me watch this show and you’re not even going to wait until the end to see what happens”? NOPE, off to bed she went because she knew I would stay up and watch the end to fill her in on the conclusion in the morning.
Tonight’s movie was ‘Have a little faith’, based on a true story written by Mitch Album. It was sponsored by Hallmark. I don’t know which part I cried more at; the movie or the commercials!
Corey this story was worth watching until the end. You would have enjoyed it. Mitch Album spent 8 years visiting his Rabbi to fulfill a favor promised; Mitch had to write the Rabbi’s eulogy. During the course of that time he really learned more about himself. His Rabbi wrote a book called ‘What’s your Glory’. It was a book that helped reveal what your individual passion or purpose might be. After writing the book, the Rabbi found that his passion and purpose was to do for others. He learned to understand their pain but more importantly understand the pain of those that were closest to him. He shared about his personal losses, struggles and challenges. Mitch asked him if he ever questioned God’s existence during his time of loss. The Rabbi’s response was, ‘on the contrary; having someone to cry out to allowed me to heal and believe’. The Rabbi added the only person that has a whole heart is the one that’s had their heart broken; because that person grows more as a result of what they survived.
There was a secondary character that shared his story as well. It centered on the disrepair of the church he was in. He talked about his struggles and indiscretions. His conversion came one night when he made a deal with God. If God would allow him to live through the night, he’d surrender to Him and do whatever he was called to do. 8 Years later, he was a pastor of the Presbyterian Church that served as a homeless shelter for the community in Detroit. In the end, Mitch wrote the Rabbi’s eulogy as well as an article about the church. The article brought awareness to the shelter which inspired donations that helped the Pastor turn on the heat, electricity, and replaced not only the large hole in the roof but the entire roof itself.
Ironically there were several parts of this movie that coincided with the thoughts I had as I drove home from CT. I thought of you and couldn’t wait to hear what your weekend was like. I recalled conversations I had with my friends and where they are in their lives. I also thought about where we were, where we are and where I hope we’ll be. Our first year was filled with milestones, getting through the “first” holidays, prom, and graduation and when your friends left for college. Now that the “firsts” are over we don’t have milestones. Now the hard part starts; we live every day working towards the ultimate milestone. Unfortunately we don’t have a calendar to gauge how long it will take to achieve our goal. That is difficult to accept some days.
‘Have a little faith’ reminded me of the night I made a deal with you. We were in the ICU, 36 hours after your injury, and we were waiting for your first surgery to remove part of your skull to relieve the pressure on your brain. The doctor told me that you may not survive the surgery and if you did you may not survive the first week of recovery. As we waited for the OR there was a moment that it was just you and me. I held your hand and told you what was going to happen. I knew how scared I was and could only imagine that you were too. I told you that if you decided to stay with us and made it out of surgery I promised that I would be with you through what ever it took to recover. If you decided not to stay, I told you to let go. We would be okay. It was all up to you and I would be good with whatever you chose. You chose to fight!
Our friends and family are praying for you. They are like an army with complete faith that you will recover. Their conviction and energy is what gives us the strength to not worry about the calendar. One of the lessons Mitch learned from his Rabbi was that Faith happens as you search for the answers to life’s questions. It happens as you meet the people that fill the holes within your life. It happens when friends, family and people in the community do for others and share their compassion and empathy to help each other heal. The Rabbi asked Mitch, “What’s your glory”? When asked if he was helping people Mitch said he was trying. The Rabbi stated, “That’s your glory…Keep trying”.
We had so much to celebrate this thanksgiving and we can look forward to creating all new traditions as we prepare for Christmas and the New Year. We don’t have a calendar to guide us but we have what is most important; our glory which is to “Have a little Faith” and “Keep Trying”!
Happy dreams, I love you, xoxo
1yr; Day 417 – Thankfuls
Hi Everyone,
Corey had a special night. She rested up this afternoon so she could go to a Thanksgiving dinner with her friends. As I mentioned last week, everyone was coming home for the holiday and the 2nd annual Thanksgiving dinner for one group of friends was at Lexie’s house. This year Corey attended. She even made her favorite side dish to share, string bean casserole. Many of her friends from this group have visited Corey but more than half of them haven’t seen her in over a year. They had a great reunion! Each of the kids took turns telling what they liked and didn’t like about their college experiences so far. Then it was a free for all with side bar conversations and laughter. I watched Corey as she turned from each conversation, listening and laughing along with her friends. She was able to stay for almost 2 hours. Check out the gallery for the updated pictures.
One of Corey’s friends sent her the lyrics of a song that suits her perfectly; it’s Joe Nichols, the Impossible…here is an excerpt that is Corey to a tee!
Unsinkable ships sink.
Unbreakable walls break.
Sometimes the things you think would never happen,
Happen just like that.
Unbendable steel bends.
If the fury of the wind is unstoppable,
I’ve learned to never underestimate,
The impossible
So don’t tell me that it’s over.
Don’t give up on you and me.
‘Cause there’s no such thing as hopeless,
If you believe:
My brother, Tom (aka Uncle Tom the Great) and my sister-in-law Marjy have a Thanksgiving tradition in their family. Instead of saying grace, they each take turns saying “Thankfuls”. Each person recites what they were most thankful for in the last year. We have been fortunate to join them for several Thanksgiving dinners (followed by serious black Friday shopping!). Unfortunately we missed last year and will not be able to be there this year either, however, we hope to skype everyone tomorrow.
We may not be sitting at the thanksgiving table with the Palamara’s but I have many thankfuls to share. I’m thankful we’re not eating dinner tomorrow at Bryn Mawr! I’m thankful to Lexie’s parents for renting ramps to accommodate Corey’s wheelchair so she could be welcome in their home. I’m thankful to have my three children home together, sleeping under the same roof tonight. I can’t wait to spend the day with them tomorrow! I’m thankful for our medical team in the ICU, BrynMawr and our homecare nurses from Maxim. I’m Thankful for Team Corey; PT, OT, ST and our teachers from the HS.
I’m thankful for the people that planned, attended and supported our fundraisers. I’m most thankful for all of you! Your words of encouragement, calls, text messages, visits, etc. have been what have sustained us this year. There were so many moments that I felt weak and your presence whether it be through the written word or in person helped me stay strong to keep standing and moving forward to help Corey’s recovery.
I’m thankful for laughter, sarcastic humor and the “normal teasing” that only family and best friends can deliver. Our family and friends are Amazing. Our community is Amazing. Thank you for your love and continued support.
We have a busy weekend planned. Tomorrow we will enjoy being together. Friday, the kids go back to Philly and I head up to Connecticut for my 30th High School reunion…yes, I did say 30th! I can’t wait to see my HS buddies. Saturday and Sunday we have more company planned. We will sign off for the weekend but would like to wish you all a wonderful weekend celebrating and enjoying your family time so you can create new thankfuls together!
Corey I want to thank you for never giving up, always reminding me that Nothing is Impossible, there’s no such thing as Hopeless and I am most grateful for the daily reminder to BELIEVE! I love you so much, xoxo
1yr; Day 415 – do one thing everyday that scares you
Hi Everyone,
I’m happy to say that Corey had a good day. That hasn’t been the case for the last four days! Since last Thursday, she’s been suffering from spasms in her legs, extreme mouth pain, she hasn’t been able to make it through several of her therapy sessions due to her fatigue, she hasn’t been interested in seeing any visitors and she has slept more in the last 4 days than she has in quite a while. I have been wondering if she’s depressed, is she healing or could it be a growth spurt? (it was a viable thought 15 years ago!)
For me, the last four days have been mentally and physically exhausting as well. Our nurse called out for the night shift and two of our nurses had to cut their day shift short. This puts me on duty almost around the clock.
The most difficult time of the day is the middle of the night. It’s natural to think that it’s quiet and serene. In our house it’s the noisiest most crowded time of day…at least it is in my mind. It often feels like a film montage that has no logical order; research, clinical studies, thoughts of past, present and future, concerns, instant replays, inspiration, plans, design, organizing thoughts, bills, medical bills, preparing for appeals and documenting progress reports. These are just some examples of what keeps me busy in addition to rolling Corey in bed every two hours as I listen to her breath when she sleeps to make sure she doesn’t aspirate.
One of my favorite quotes from Eleanor Roosevelt is; “Do one thing everyday that scares you”. When Corey has a bad run like she did this week, getting through everyday qualifies as my answer. My daily search to highlight her achievements gives me the strength I need to not only get through the day but often prepares me for the next 24 hours. When Corey has a string of difficult days my search is much more challenging. It’s the string of difficult days that force me to put my head down and do what needs to be done. They remind me to stop; breathe and be patient. They force me to refocus, look back at where we were and regain perspective as I recalculate the timeline. Just before doubt and worry begin to overcome my strength Corey has a day that hits them out of the park! I’m grateful that today was one of those days.
Gillian, PT, tested Corey for her six week evaluation test for insurance. She must be able to not only document functional improvement but continued improvement with NEW gains not just improvement of the current gains. She really pushed Corey to perform and Corey did not like it! Corey voiced her frustration but completed a full hour of what can be best described as agility testing. Sometimes Corey can not show a response to a command immediately. She needs time to process the command and then her brain needs time to send the signal for her body to respond. Part of today’s evaluation was to find the immediate responses and Corey was very frustrated when her responses couldn’t react on command. She was angry yet kept trying. At one point she had to kick a ball with her left foot (she has not achieved this movement yet). In her anger, she kicked the ball out of the living room using her right foot. We retrieved it and asked her to do it again. Then for the first time, it happened. She tapped the ball with the tip of her left sneaker! Gillian’s response, “if she can do it once, she can do it again”…after several trials and a few more retrievals she did it again! Refocus; 9 months ago this week we documented her first kicks with her right leg.
Diane, ST, is working to prepare Corey for her swallow study. Today Corey tried water, thickened apple juice and applesauce. All were mildly successful until we offered Peach Yogurt. That was a home run! I initially dip the spoon in the yogurt and the residue that clings to the spoon is the amount we introduce. With each subsequent taste, I add just a little bit more. Corey opens her mouth, closes her lips around the spoon, I pull the spoon out allowing her lips to capture the yogurt. She begins a chewing motion, tucks her chin to her chest and swallows repeatedly. When she’s finished she opens her mouth to show me it’s gone and says “Ah” so we can hear that it’s cleared from her throat. As she tasted the Peach flavor, her eyes lit up and she smiled as she chewed. We were able to give her 10 spoonfuls over a 30 minute period and she loved it. In fact, we now have the green light to introduce other types of flavors and consistencies to practice for the swallow study. With thanksgiving approaching we asked Corey if she’d like to try mashed potatoes and gravy. She smiled. When I asked her if she’d like candied yams, she literally called out in a high pitch clear voice, “YAMS”! Refocus; It was thanksgiving weekend last year that her Trach was removed.
Corey created Ragu Bolognese today in cooking class. Prior to our getting started, Brittany and Corey wash her hands. Corey showed another first. Brittany stated that they had to raise Corey’s sleeves. Corey pushed her left sleeve up with her right hand but then moved her left arm towards her right sleeve and extended her pointer finger to try to lift the right sleeve. Refocus; 9 months ago she could only flinch her right thumb and 1 month ago she successful lifted her left thumb for a double thumb up!
Until we can acquire adaptive cooking tools for Corey, Brittany, OT, created an amazing solution. A One Handed cutting board with 3 screws to skewer our vegetables and two PVC pieces strategically placed in the corner of the board to brace a vegetable to be cut on an angle. Corey also used a mortar and pestle to mince assorted spices; she measured each ingredient, chopped carrots and celery all with one hand.
“You gain strength, courage & confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
— Eleanor Roosevelt
Corey how many times in a day do you feel like you cannot do what is asked of you? How many times do you try a new movement, and as you watch for the result, you surprise yourself when you achieve it. Would you like a realistic definition of perspective? Today would not have been possible if you refused to try everyday for the last 13 months. I’m so proud of you, xoxo
1yr; Day 412 – miss party pants
Hi Everyone,
Corey had a tough day. Her discomfort didn’t allow her to fully participate in OT or Speech. She had a mid-day shower and that seemed to help with her afternoon PT session. By 4:30 she was sound asleep! We have noticed that Corey is sleeping more this week than she normally does. I’m going to take that as part of a new healing phase (I hope).
Corey woke up at 8pm ready to party! I was teasing her that she was “Miss Party Pants” all bright eyed and ready to go. It is Friday night after all! I asked Corey what she wanted to do. She wrote Eat! She was hungry and thirsty. We tried some homemade applesauce given to us from my girlfriend. Corey was making “happy noises” humming as she chewed and swallowed. It was adorable. She didn’t do as well with a sip of water (thinner consistencies are more difficult to swallow) but she is making the effort. Her interest in food is intense and we’re very conscious NOT to eat in front of her. If we do she leans forward, extends her hand, she opens her mouth and gestures like a baby bird wanting mama bird to feed her. I was trained by my mother. Eleven for dinner was nightly event! As a result, I learned to feed people…those big blue eyes of Corey’s pull at my heart strings and I want to give her whatever I’ve got in the house! It’s so hard to be patient and try to explain to her that her body is not quite ready to jump up to the buffet yet.
To distract her I pulled out the laptop and keyboard to try to work on her typing skills. She typed “sing” on the keyboard. DONE! We had our own Karaoke night. I set the laptop up on her bed tray. I put on Pandora for back round music and went to Google to search for the lyrics to the songs we chose to sing. It was quite a party! I gave Corey a wooden spoon to use as her microphone. As she sang, she’d kick her foot to the beat and I danced around the room. I’m thinking we might enter America’s funniest home videos…there’s a very good chance we’ll win the 100,000!
Corey I had a lot of fun with you tonight. I hope you feel better over the weekend. Your girlfriend’s are starting to arrive home for thanksgiving break and they can’t wait to see you. Your dance card is starting to fill up. Maybe that’s just what you need to get your mind off the daily pain you feel. There’s nothing better than a visit from your BFF’s to make you feel better! Happy dreams honey, xoxo