We have been SOOOO busy just living life that we haven't really caught up with ourselves until today. The joy of a beautiful day at Tahoe today can not be surpassed by much. Caitlin and I both needed a get away and a bit of peace for the day. What could be better than the most beautiful place on earth!
It is difficult working full time and taking care of everything. Each time one fire is put out another one ignites. Maintaining therapies for Caitlin is just a never ending battle. The energy and the hours to understand and appeal this situation is more than anyone should ever have to deal with. My next career could be working in Washington, DC educating all the bureaucrats as to what it really is like. That or working as a patient advocate for someone who needs a persistent individual in their corner. Despite my efforts we really don't know from one day to the next which therapy Caitlin will have or which will be denied. We are in the process of a fair hearing with Medicaid to have our appeals heard and hopefully rectify the way the past month has been.
We have been to weddings, wedding showers, bachelorette parties, and baby showers. Our weekends have been spent celebrating our friends and the events in their lives. As fun as it is we want to include others in our celebrations no matter how small they are. We have lost that a bit in our lives because of time and everyone being so busy. But there are many celebrations to be had in Caitlin's life. Each day there is gained strength, ability, and forward movement no matter how slow it may seem to others. I think there is a difference always in thinking about what was, what could be, and what is happening today. I continue to celebrate today and maybe yesterday but I can't look much farther ahead. Being tired and angry are not a good combination, but I am feeling those two things more now than ever. I have been questioning myself a lot these days as I grasp at straws to hold onto a life that is not strictly guided by Caitlin being a victim of a stroke. To truly feel one emotion I know that you have to feel others as well but I just want that one emotion to be JOY... right now and maybe forever!
Saturday, September 26, 2009
Sunday, August 16, 2009
Many P's
Patience! Progress! Persistence! Perseverance! Positive Perspective! Planning!
Seems as if this last month has been one more roller coaster ride with all that our life entails. Patience in learning to live with a new routine, new caregivers, new ideas about therapies, and new levels of relationships with those we know. Progress by Caitlin in all areas witnessed by those around her yet not by the granting individuals in the Medicaid office. Persistence in maintaining the life for Caitlin that I believe she deserves. Perseverance to deal with it all! Believing that a positive perspective is the expectation I have to live up to!
I think I have given up on the idea that life can and will flow smoothly even living with a day to day credo. Each day when I believe that I have orchestrated a plan that will work a new snag develops and it absolutely feels as if I am on a Yo-yo string or on a roller coaster ride. Not the way I thought I was capable of living but I am trying hard to roll with the punches and falls.
Caitlin has been dropped once and then fallen in the care of one of her PCA's. Both unfortunate accidents left Caitlin with goose eggs on her head and the last time with a bit of a black eye. Building back trust after these incidents is difficult and yet the situation of finding good caregivers continues to be a bit of a struggle. The agency we work with is good as are our two current caregivers but the reality of what can happen in just a split second is frightening. After the incident this past week I am fearful of how this week will go but hopeful we have worked through the fear and will move forward.
Caitlin startled me the other day when I asked her who was texting her so early in the morning and she rather distinctly said, "No one". Where it came from was a bit of a shock. We both laughed because she surprised herself too! Currently working on specific sound production has Caitlin practicing b, f, p, and v. We were practicing last weekend and attempting to say F... you for fun. Caitlin managed to get some voice behind it and we all cheered. Michael summed it up rather nicely when he said, "Would you ever have thought mom would be celebrating such vulgarity?" Never in a million years would we have imagined that... but life is changed and we will take whatever words we can get!
We have tested the ambucs bikes and are awaiting the correct adaptive parts so hopefully in a week or so Caitlin will finally have her bicycle. It was great to watch her ride the bikes and actually go down Susan Wallace's driveway. Caitlin's smile said it all! I am anxious to have a reason to get outside more and have Caitlin gain strength while having some fun!
Driving up to Tahoe with Uncle Ted and Mary Ann was a highlight last weekend. Seeing our beloved Lake Tahoe and actually putting Caitlin's foot in the sand was exciting. Attempting to pull the wheel chair any measurable distance across the sand was difficult. I so want to get Caitlin on a raft in the Lake. Other than having help to carry her down the length of the beach to the water I am not sure how we can do it. Where is that muscular, hunky knight (stripped of his shining armor) when you need him?
We carry on with our many P's!
Seems as if this last month has been one more roller coaster ride with all that our life entails. Patience in learning to live with a new routine, new caregivers, new ideas about therapies, and new levels of relationships with those we know. Progress by Caitlin in all areas witnessed by those around her yet not by the granting individuals in the Medicaid office. Persistence in maintaining the life for Caitlin that I believe she deserves. Perseverance to deal with it all! Believing that a positive perspective is the expectation I have to live up to!
I think I have given up on the idea that life can and will flow smoothly even living with a day to day credo. Each day when I believe that I have orchestrated a plan that will work a new snag develops and it absolutely feels as if I am on a Yo-yo string or on a roller coaster ride. Not the way I thought I was capable of living but I am trying hard to roll with the punches and falls.
Caitlin has been dropped once and then fallen in the care of one of her PCA's. Both unfortunate accidents left Caitlin with goose eggs on her head and the last time with a bit of a black eye. Building back trust after these incidents is difficult and yet the situation of finding good caregivers continues to be a bit of a struggle. The agency we work with is good as are our two current caregivers but the reality of what can happen in just a split second is frightening. After the incident this past week I am fearful of how this week will go but hopeful we have worked through the fear and will move forward.
Caitlin startled me the other day when I asked her who was texting her so early in the morning and she rather distinctly said, "No one". Where it came from was a bit of a shock. We both laughed because she surprised herself too! Currently working on specific sound production has Caitlin practicing b, f, p, and v. We were practicing last weekend and attempting to say F... you for fun. Caitlin managed to get some voice behind it and we all cheered. Michael summed it up rather nicely when he said, "Would you ever have thought mom would be celebrating such vulgarity?" Never in a million years would we have imagined that... but life is changed and we will take whatever words we can get!
We have tested the ambucs bikes and are awaiting the correct adaptive parts so hopefully in a week or so Caitlin will finally have her bicycle. It was great to watch her ride the bikes and actually go down Susan Wallace's driveway. Caitlin's smile said it all! I am anxious to have a reason to get outside more and have Caitlin gain strength while having some fun!
Driving up to Tahoe with Uncle Ted and Mary Ann was a highlight last weekend. Seeing our beloved Lake Tahoe and actually putting Caitlin's foot in the sand was exciting. Attempting to pull the wheel chair any measurable distance across the sand was difficult. I so want to get Caitlin on a raft in the Lake. Other than having help to carry her down the length of the beach to the water I am not sure how we can do it. Where is that muscular, hunky knight (stripped of his shining armor) when you need him?
We carry on with our many P's!
Wednesday, July 15, 2009
A New Chapter Begins!
July 20th starts a new school year for me and a new chapter in our lives. Caitlin has a new schedule with a Personal Care Assistant every morning from 8:15-12:15 and therapies M, W, F afternoons from 1-4. Tuesday and Thursday afternoons will be a variety of events for Caitlin but I am returning to school working full time. I think we can do this and deal with the snags as they occur without too much stress! I am the eternal optimist on this note! We are very, very fortunate that Kim, a CNA who took care of Caitlin in the hospital, will be able to be her Personal Care Assistant for part of the week. A comfort for us and fun for Caitlin to have Kim to laugh and joke with as they go through her morning routine a few days of the week.
Caitlin has gotten to take the brace off her left leg and is quite proud of this. Worthy of a celebration and a clean, silky shaven leg! Caitlin continues to gain muscle strength and last night's visit from Karen and Lisa, co-workers from Sierra Eye, was a testament to the visibility of this strength. They hadn't seen her in about a month and they were obviously impressed with Caitlin's ability to get up from the wheelchair and just stand by herself. She has a Statue of Liberty pose to keep her balance and does look rather statuesque. This week Caitlin is going to get an adapted bicycle that she will be able to ride outdoors. She rides a recumbant bicycle in therapy with minimal assistance so she should be able to ride this other bicycle too! Her persistent mother read about it in the newspaper, just happen to have a connection with Susan Richards, a physical therapist affiliated with the bicycles, and made the phone call. Lo and behold, Susan was a miracle worker and made her connections to get Caitlin a bike to try. I am so appreciative and excited to think Caitlin can motor around on a bicycle. I am hopeful we can put it on the wheelchair lift and take it to various places to ride. Wouldn't that just be so neat to have new adventures! Check the bikes out on ambucs.org so you have an idea.
Life continues to have many blessings as well as many struggles but Caitlin keeps smiling with a lot of determination and persistence. Her "particularness" in how things are done has always driven me crazy and it continues to do so. When I told her she was making a "mountain out of a molehill" her response was "When you can only do the molehill stuff you better believe it is important!" That said and done, I continue to be as patient as possible but when I get that mother look of glared eyes, finger shaking, and total frustration on her face I know it is time to take a very, very deep breath and be thankful we can start all over again!
Caitlin has gotten to take the brace off her left leg and is quite proud of this. Worthy of a celebration and a clean, silky shaven leg! Caitlin continues to gain muscle strength and last night's visit from Karen and Lisa, co-workers from Sierra Eye, was a testament to the visibility of this strength. They hadn't seen her in about a month and they were obviously impressed with Caitlin's ability to get up from the wheelchair and just stand by herself. She has a Statue of Liberty pose to keep her balance and does look rather statuesque. This week Caitlin is going to get an adapted bicycle that she will be able to ride outdoors. She rides a recumbant bicycle in therapy with minimal assistance so she should be able to ride this other bicycle too! Her persistent mother read about it in the newspaper, just happen to have a connection with Susan Richards, a physical therapist affiliated with the bicycles, and made the phone call. Lo and behold, Susan was a miracle worker and made her connections to get Caitlin a bike to try. I am so appreciative and excited to think Caitlin can motor around on a bicycle. I am hopeful we can put it on the wheelchair lift and take it to various places to ride. Wouldn't that just be so neat to have new adventures! Check the bikes out on ambucs.org so you have an idea.
Life continues to have many blessings as well as many struggles but Caitlin keeps smiling with a lot of determination and persistence. Her "particularness" in how things are done has always driven me crazy and it continues to do so. When I told her she was making a "mountain out of a molehill" her response was "When you can only do the molehill stuff you better believe it is important!" That said and done, I continue to be as patient as possible but when I get that mother look of glared eyes, finger shaking, and total frustration on her face I know it is time to take a very, very deep breath and be thankful we can start all over again!
Thursday, June 4, 2009
Busy Month!
It has been a month of running here, running there, running, running everywhere! We are doing GREAT! Our biggest accomplishment in the past month is that over Memorial Day weekend we actually went out of town! It was so much fun and oh, so good for us to know we could do it. We went to Kelly Oldham's wedding shower in Meadow Vista, CA which is about 90 miles away. Caitlin drove with her friend, Mal, while I drove with Mal's mom, Deb. That was such a great feeling of independence for both Caitlin and I! Kelly has been a friend of Caitlin's since the seventh grade so it was a wonderful visit and celebration with good friends. After the shower we continued on to Brian and Linda's which was another 90 miles. Sitting in the car is comfortable for Caitlin but the tone in her right leg definitely sets in. She was so excited that none of that mattered. At least not until we got home and she slept for almost a whole day!
We visited with Brian, Linda, Sarah, and Brett. As always, Brian and Linda doted on us. I always am able to let down and enjoy being taken care of by my big brother. We also visited Caitlin's great buddies, Bill and Jill Wallace. Two of Bill and Jill's sons were also part of our visit. The Wallace family is so amazingly full of love for Caitlin and vice versa. I can't put words to the love in her eyes as we left the Wallace house in Lafayette. She keyed into her phone that she was officially up for adoption by Bill and Jill! Since they have three sons, Caitlin does believe they too need a daughter. Not willing to give her up but happy to share in the wonder of their love!
Caitlin is gaining strength in all areas. Each time someone sees her that hasn't seen her in a week or two they comment on the difference they notice. I can tell a difference when I transfer her in that I just need to be the stabilizer more than the lifter. Her abs are strong! My quads are definitely put to good use! Caitlin is working hard at pushing air out to make some sounds. She is working on, "HI!". I know we will be hearing it soon!
I finished school on June 12th and now have a five week reprieve from the racing around. Hopefully it will be ample time to figure out how I am going to work five days a week once July 20th rolls around. More phone calls and appointments are in store. But also will be some relax and rejuvenation time for me. I am pretty empty with little left to give but know I will recoup with a few good long walks and some FREE time.
We just keep on keepin' on!
We visited with Brian, Linda, Sarah, and Brett. As always, Brian and Linda doted on us. I always am able to let down and enjoy being taken care of by my big brother. We also visited Caitlin's great buddies, Bill and Jill Wallace. Two of Bill and Jill's sons were also part of our visit. The Wallace family is so amazingly full of love for Caitlin and vice versa. I can't put words to the love in her eyes as we left the Wallace house in Lafayette. She keyed into her phone that she was officially up for adoption by Bill and Jill! Since they have three sons, Caitlin does believe they too need a daughter. Not willing to give her up but happy to share in the wonder of their love!
Caitlin is gaining strength in all areas. Each time someone sees her that hasn't seen her in a week or two they comment on the difference they notice. I can tell a difference when I transfer her in that I just need to be the stabilizer more than the lifter. Her abs are strong! My quads are definitely put to good use! Caitlin is working hard at pushing air out to make some sounds. She is working on, "HI!". I know we will be hearing it soon!
I finished school on June 12th and now have a five week reprieve from the racing around. Hopefully it will be ample time to figure out how I am going to work five days a week once July 20th rolls around. More phone calls and appointments are in store. But also will be some relax and rejuvenation time for me. I am pretty empty with little left to give but know I will recoup with a few good long walks and some FREE time.
We just keep on keepin' on!
Tuesday, May 5, 2009
Happy 26th Birthday!
We were able to surprise Caitlin for her birthday! Total delight! It was so much fun for all of us to see Caitlin so genuinely happy and having a great time! I do believe that Caitlin is off to a great year of accomplishments and celebrations! There will continue to be a tremendous amount of hard work, determination, and perseverance involved in this. We all know Caitlin's strength will make this possible. Not a day goes by that there is not something new shining through!
Saturday, April 25, 2009
JUST BREATHE!
As of yesterday we can begin to breathe a bit easier...the official paperwork arrived stating that Caitlin's Medicaid benefits will continue. Therapies will be uninterrupted and no more appointments that last three hours. Hopefully no more paperwork to fill out for a while! Hopefully no new stress to fill this place either! We need to go on with the good things and wholeheartedly celebrate them with nothing negative lurking under the surface!
Caitlin has been doing very well in relaxing that right arm after the Botox injections. Amazing in that she had 12 injections between her shoulder, bicep, pectoral, and forearm and never once flinched or winced. I did that for her! Jeri, Caitlin's OT, came to the appointment with us which was really wonderful. She and the doctor worked together in relaxing Caitlin's arm prior to the injections. It is amazing to watch Caitlin take her left arm and just straighten her right arm out to a full extension without much difficulty. Compared to the arm wrestling I felt like I was doing in the past when I tried to move the right arm this is just so drastically different that I hold my breath each time I watch. Caitlin has been diligently working on dressing herself and the arm movement has helped tremendously. As always I am in awe of Caitlin's determination and perseverance with each task she undertakes. It may take her an hour to get one shirt off and another one on but she does it and almost always has a huge smile on her face when she is finished.
I returned to school this week and my plan is to work three days each week. It is a bit of a rush at lunchtime when I go pick Caitlin up at therapy, bring her home, and then return to work. Friends have been here to feed Caitlin lunch and stay two hours. Stephanie, Michael's girlfriend, then comes to stay until I get home from school. One week down and seven more to go until school is finished for this year. We will make it happen one week at a time!
Caitlin's vision in her right eye changed as a result of the stroke. This week she got a new corrected lens in her glasses and the difference in her ability to read the computer screen has been tremendous. Luckily she had her connections at Sierra Eye Associates to get right in and have the problem solved!
I feel a need for rejuvenation after what felt like such a fight to make sure Caitlin continues to get what she needs. Advocacy is a huge balancing act between emotions, thoughts, and actions. There are days when the balance is challenging to maintain but at the end of each day I finally am crawling into my own bed upstairs (the air mattress for two months on the floor downstairs was enough) and am sleeping the whole night. High expectations and striving to be your very best self have always been part of our lives and I realize today how strongly both Caitlin and I continue to hold onto this each and every day. We are working hard together and individually to continue to succeed in overcoming the challenges we are faced with. I have to keep reminding myself to just breathe!
Caitlin has been doing very well in relaxing that right arm after the Botox injections. Amazing in that she had 12 injections between her shoulder, bicep, pectoral, and forearm and never once flinched or winced. I did that for her! Jeri, Caitlin's OT, came to the appointment with us which was really wonderful. She and the doctor worked together in relaxing Caitlin's arm prior to the injections. It is amazing to watch Caitlin take her left arm and just straighten her right arm out to a full extension without much difficulty. Compared to the arm wrestling I felt like I was doing in the past when I tried to move the right arm this is just so drastically different that I hold my breath each time I watch. Caitlin has been diligently working on dressing herself and the arm movement has helped tremendously. As always I am in awe of Caitlin's determination and perseverance with each task she undertakes. It may take her an hour to get one shirt off and another one on but she does it and almost always has a huge smile on her face when she is finished.
I returned to school this week and my plan is to work three days each week. It is a bit of a rush at lunchtime when I go pick Caitlin up at therapy, bring her home, and then return to work. Friends have been here to feed Caitlin lunch and stay two hours. Stephanie, Michael's girlfriend, then comes to stay until I get home from school. One week down and seven more to go until school is finished for this year. We will make it happen one week at a time!
Caitlin's vision in her right eye changed as a result of the stroke. This week she got a new corrected lens in her glasses and the difference in her ability to read the computer screen has been tremendous. Luckily she had her connections at Sierra Eye Associates to get right in and have the problem solved!
I feel a need for rejuvenation after what felt like such a fight to make sure Caitlin continues to get what she needs. Advocacy is a huge balancing act between emotions, thoughts, and actions. There are days when the balance is challenging to maintain but at the end of each day I finally am crawling into my own bed upstairs (the air mattress for two months on the floor downstairs was enough) and am sleeping the whole night. High expectations and striving to be your very best self have always been part of our lives and I realize today how strongly both Caitlin and I continue to hold onto this each and every day. We are working hard together and individually to continue to succeed in overcoming the challenges we are faced with. I have to keep reminding myself to just breathe!
Wednesday, April 8, 2009
Jumping through hoops...being pushed to the limit!
Time passes so quickly when you are racing around trying to accomplish everything that needs to be done...especially when that job is bigger than you ever knew! I have been dealing with Caitlin being granted Medicaid until the end of April. Rather frustrating when it was only given to her in the middle of March! It is a huge undertaking to understand how the government works, realize it doesn't work for Caitlin, and then try to find a way to make it work. The amount of time invested in this has been huge. It has also caused many tearful and frustrating moments for me. Hopefully in a few weeks all these issues will be resolved with Caitlin being granted a waiver to continue on Medicaid. I will continue with all my might to knock on doors, make phone calls, fill out as many forms as it takes, and attend as many interviews and appointments necessary. Today I was told by a state worker that I knew more about the system than he did! Isn't that a bit frightening when he is in a position of making decisions and I am not. It is essential that Caitlin have Medicaid so that she can continue all of her therapies. She has exhuasted her insurance therapy benefits for the year. My belief is that she can't miss one day of therapy!
Caitlin has been pushing hard in her therapies. Each M, W, F she has her routine down...work hard in therapy, make arrangements with Michael via text message where he would like lunch from so I can drive her to his studio to deliver him lunch, eat, and then crash for a few hours. She has been consciously moving the right side of her body. It is so amazing to watch her move her right arm down and also to notice it being completely straight when she wakes up in the morning. Watching her walk in therapy is equally impressive. She will pick her right foot up a bit as if ready to take a step and with help slide it on the floor to take that step. Merrie, Caitlin's physical therapist, says that her muscles are strong in her leg and that it is the hip flexor that has to get stronger for the walking. When she told me today that they will have to get Caitlin crawling soon I was rather stunned. I just need to keep envisioning that and I know I will see it happen. Caitlin will get botox injections into her right shoulder muscles and her bicep on April 16th. This will help the usage of her arm by reducing the spasticity. It will take a few weeks to see the results of this but she is ready to move forward with this. I find it rather amusing when Caitlin writes me the message on her iPhone, "just wait until I start talking"! She is moving her mouth often and attempting to form words. Sometimes I am smart enough to read her mouth and understand what she is mouthing. One thing that has returned is Caitlin's giggle. It is so fun because it is as contagious as it always has been. She is rediscovering her ability to make some sounds and at times gets my attention with a sound rather than the infamous bell she rings when she needs me. I hear that bell in the middle of the night even when she isn't ringing it!
Caitlin continues to eat more. Each meal takes time but she certainly is enjoying the rediscovery of favorite foods. Three out of four days this past week she had a cheese enchilada from Hacienda . It was fun to sit in the restaurant with family and friends and watch Caitlin eating chips and dip through a smile!
I have yet to resolve my needing to be at work issues but if we get the Medicaid issue resolved there may be some help available. Unfortunately the way Medicaid Personal Care Assistance works is that time is not chunked together in blocks of time. A Personal Care Assistant helps with getting dressed, eating, and bathing when it is necessary throughout the day. So the help that is available is in short amounts of time throughout the day. The thought of someone running in and out of our house to help Caitlin seems absurd in some ways. I am happy to do my part throughout the day and have help for one block of time so I can work half of the day. I finally got to the point with one social worker and asked if people he worked with typically were begging to go to work as I am. He had pushed me over the edge with the lament that this is the system and basically it was a too bad, so sad situation. Something will present itself as workable but in the meantime we carry on with tears, smiles, determination, fortitude, persistence, courage, and a tremendous amount of LOVE! Happy Easter to all!
Caitlin has been pushing hard in her therapies. Each M, W, F she has her routine down...work hard in therapy, make arrangements with Michael via text message where he would like lunch from so I can drive her to his studio to deliver him lunch, eat, and then crash for a few hours. She has been consciously moving the right side of her body. It is so amazing to watch her move her right arm down and also to notice it being completely straight when she wakes up in the morning. Watching her walk in therapy is equally impressive. She will pick her right foot up a bit as if ready to take a step and with help slide it on the floor to take that step. Merrie, Caitlin's physical therapist, says that her muscles are strong in her leg and that it is the hip flexor that has to get stronger for the walking. When she told me today that they will have to get Caitlin crawling soon I was rather stunned. I just need to keep envisioning that and I know I will see it happen. Caitlin will get botox injections into her right shoulder muscles and her bicep on April 16th. This will help the usage of her arm by reducing the spasticity. It will take a few weeks to see the results of this but she is ready to move forward with this. I find it rather amusing when Caitlin writes me the message on her iPhone, "just wait until I start talking"! She is moving her mouth often and attempting to form words. Sometimes I am smart enough to read her mouth and understand what she is mouthing. One thing that has returned is Caitlin's giggle. It is so fun because it is as contagious as it always has been. She is rediscovering her ability to make some sounds and at times gets my attention with a sound rather than the infamous bell she rings when she needs me. I hear that bell in the middle of the night even when she isn't ringing it!
Caitlin continues to eat more. Each meal takes time but she certainly is enjoying the rediscovery of favorite foods. Three out of four days this past week she had a cheese enchilada from Hacienda . It was fun to sit in the restaurant with family and friends and watch Caitlin eating chips and dip through a smile!
I have yet to resolve my needing to be at work issues but if we get the Medicaid issue resolved there may be some help available. Unfortunately the way Medicaid Personal Care Assistance works is that time is not chunked together in blocks of time. A Personal Care Assistant helps with getting dressed, eating, and bathing when it is necessary throughout the day. So the help that is available is in short amounts of time throughout the day. The thought of someone running in and out of our house to help Caitlin seems absurd in some ways. I am happy to do my part throughout the day and have help for one block of time so I can work half of the day. I finally got to the point with one social worker and asked if people he worked with typically were begging to go to work as I am. He had pushed me over the edge with the lament that this is the system and basically it was a too bad, so sad situation. Something will present itself as workable but in the meantime we carry on with tears, smiles, determination, fortitude, persistence, courage, and a tremendous amount of LOVE! Happy Easter to all!
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