November News!

A little rest and relaxation from school has afforded me the time I have needed to continue on with the Medicaid hassles. Each day and each phone call raises my hopes for resolution in continuing all Caitlin's therapies and then once the authorizations are submitted and therapies are denied I am exasperated! It is a long complicated story to say the least, but peristence is necessary at an alarming depth. We have been directed to the Nevada Disability Law Center for guidance which seems to be a relief but I am not taking a deep breath until I know that there is some sort of gaurantee that this monthly stress can be allieviated.
We carry on with life and today we are headed to the University of Nevada's basketball game. It was fun to go the other night because Caitlin's cousin, Keith, is a freshman on the team. He got into the game and scored a three pointer! Fun to be socializing with friends and family in a very familiar way. We are headed to the Bay Area for Thanksgiving this year and are very excited to carry on with a family tradition for this holiday. Hopefully we will have enough time to visit with friends there as well. We are so ready to get out of town!
Celebrations and frustrations continue to be a part of each day and often it feels like a big roller coaster ride of emotion. This pattern is exhausting yet it is what it is. We are coping with the ride as best we can and are thankful for the strength we continue to have. We are grateful for all the love, blessings, and prayers that our family and friends continue to bestow upon us. May you feel our love, support, and prayers in your life as well. Happy Thanksgiving to all!

A New Year for the Fuetsch's!

This morning I woke up after a sleepless night, took a deep breath and decided we will celebrate a new year in our lives...much different than last year on this day! Instead of calling all over town looking for Caitlin who never appeared for breakfast, Mina is spending the last day of her honeymoon in the Bahamas! Instead of being in a state of shock over Caitlin's stroke I am heading to school to celebrate the smile on every child's face. After that I am picking up Caitlin from her therapies and we are heading to get papusas for dinner. This year she can finally eat one of her favorite foods again. The sky is the limit for this year! Join us on this journey however bumpy the road may get and celebrate each day in every way that you can!

Good-bye to summer!

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!

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!

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!

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!

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!

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!

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!

Heroes!

It just seems as if I have been singing in my head lately..."You are my hero!....". Caitlin is my hero with her strength and determination. Michael and Stephanie are my heroes as they quietly do so many little things to make both Caitlin and I feel loved and appreciated. My colleagues at work are heroes in that they keep me on my toes the minute I walk in the door. They remind me of who I have always been at work each day. The hugs and miss yous that they give me are genuinely heartfelt. Caitlin's co-workers are heroes in that they keep on including Caitlin and I in their activities and lives. Our friends, neighbors, and family are such unsung heroes in that they have hung in there for all these months offering love and support in so many varied ways. Each day I can't help myself but get teary eyed at all the kindness that is bestowed on us each day. Yesterday when Caitlin had to get blood drawn the technician at Labcorp asked if she could pray over Caitlin. I said yes and she did pray right there in her lab station. How could you not get emotional over that!
Our days have been filled with outings and appointments, therapy sessions and new discoveries. A huge step forward is that Caitlin can suck liquids through a straw and chew soft foods and swallow. Of course if you know Caitlin and her eating habits you know that noodles and bread have always been her favorites. She has been eating pieces of bagels, croissants, and a variety of noodles. It takes a lot of effort to eat but Caitlin is proudly doing this. It was so great the other day when she let me know she was hungry. It was also eye opening when Michael told me they had stopped for milkshakes and Caitlin drank hers through a straw. I thought he was teasing but he was dead serious. Caitlin just grinned at my disbelief!
Last week we took a ride to our beloved Lake Tahoe. The sky was so blue, the snow glistened on the mountains, and the lake was crystal clear. We took a little stroll along the beach and sat in the car for a picnic. It was great to get away and share an adventure that was just like old times! Going to a restaurant with Michael and Caitlin for lunch last week proved to be a very tender moment for me. It was Caitlin's first time in a restaurant since getting out of the hospital. She reminded us of this and I was so proud of how well we did with the wheelchair and eating our Chinese food. I just will never take anything forgranted again. Oh, I probably will but at least I will have celebrated it the first time it happened again for Caitlin!
Caitlin continues to make strides in her recovery. The technology that has been installed in her iPhone has been helpful. She is able to type a message and then hit "speak " and we can hear her message. This makes life very portable and easier for her communication. We actually put the electric wheelchair on my car lift and drove to rehab today. It is a bit nerve wracking to keep glancing in the rear view mirror and see the wheelchair out the back window. But the most important thing is that we did it! This old dog is definitely learning new tricks!
I have been making Caitlin show off for family and friends when they visit. I am just so proud of how she is able to walk in our house with our help. Yesterday Caitlin stood at the bathroom counter and brushed her hair. I try so hard not be the over protective mother as Caitlin becomes more independent. I will get better at this, but for now I am still hovering a bit! Hovering with pride and delight is a wonderful thing! Being a caretaker is tiring at best but my spirit gets rejuvenated each time I see Caitlin smile, hear her laughter, and get the thumbs up about something. Of course life is also looking quite wonderful right now in that I begin a month's vacation on Friday. It will be so nice not to be juggling all the balls of my life for a bit. I do have to take on the challenge of figuring out how I am going to work more days after April 20th. But for today I am enjoying a beautiful spring like day and sending big hugs to everyone reading this! We love you!

Can't put it into words but...!

Everyday it seems that we have something to celebrate! Today it is how straight Caitlin was able to get her arm! This new picture is for Jeri, Caitlin's OT, who insists that Caitlin let me move her right arm at least once a day. Some days I get the look from Caitlin but she does let me stretch that arm out. Next week we will have a consult about getting Botox injections into Caitlin's right bicep to help reduce the spasticity in it. This is a common treatment that will be worth a try. Compared to how tense Caitlin's arm was a month ago she has made nice progress but still has a ways to go to get movement and use of this arm and hand. I found an interesting website http://www.valeriegreene.com/ which you might want to look at. Valerie Greene had a stroke when she was 31 and now is a public speaker in advocacy of stroke victims. The photo on line of her in the wheelchair reminded Caitlin of herself. Valerie was paralyzed on the left side of her body, unable to speak, and also lost her hearing on her left side. We purchased her books to read more about her. I am inspired by her recovery over time. It is that "recovery over time" that is so critical in maintaining the best perspective possible.
Our days seem best described as a tear and a smile all rolled into one. It gets frustrating for me to create and define this new life of ours, yet my heart is filled with the love of our family and friends who just never seem to give up on us or forget about us whether they are far away or here in Reno. It is always so heartwarming to have so much laughter fill our house as everyone piles into our living room and gets really cozy. Mal and I agree that Extreme Home Makeover needs to come and blow out the back of our house and make a huge gathering area so we can host the parties and Sunday dinners and fit everyone. In the meantime, do come and cozy in with us...Sadie will put her head in your lap and expect behind her ears to be pet endlessly!

Life Goes On!

It seems as if we are not skipping a beat as one day rolls into the next. Caitlin and I have been out running errands, going to appointments, shopping (of course), and even going to cousin Keith's basketball game on Friday night. One day I counted how many times I had transferred Caitlin and it was 20! Needless to say, that was a bit excessive and I was physically tired but Caitlin and I did it successfully! Therapies are scheduled for Monday, Wednesday, and Friday mornings from 9-12 from here on out. This schedule will allow me to work those exact same mornings on a very regular basis which is great. Caitlin and I will be going to school when I have things I need to accomplish on Tuesday and Thursday. Hopefully this week we will get the hitch on the back of my car for her electric wheelchair and that will be great for Caitlin's independence with going to therapy and just about anywhere else too. We are waiting for the hitch adapter to arrive. Sean Whisler, a colleague at my school, took it upon himself to take care of this part of our lives. He managed to find a decent lift on Craig's list for a phenomenally low cost. Once again we are so blessed to have such caring people in our lives. As we are working out all the kinks of our life as it is right now I am proud to say we are surviving and thriving. Caitlin and I have some "mother/daughter" moments but overall life is good...a lot of work, a lot of laughter, and a whole lot of love!
Michael and Stephanie have introduced a new card game into our lives called Phase 10. The competition is healthy and involves everyone, especially Tim. Each day when he arrives to visit Caitlin he is determined he will beat Caitlin. We are still waiting for that to happen! The refrigerator has become the "Bragging Wall" for the score sheets. Sweet Stephanie is no longer so sweet as she is not a humble victor! I keep teasing her she will no longer be invited to family dinner if she keeps this up!
It is so fun for me to watch Caitlin sit at the kitchen table and be glued to the computer looking at facebook and myspace. Her life is reappearing a day at a time. I can only imagine how difficult it is to look at everyone's lives, their fun photos, and then reflect on her own life right now. As the mother I am so vested in creating new memories for Caitlin and not focusing on the past but it is a huge challenge in doing this. I am sleeping on an air mattress on the floor of Caitlin's current downstairs bedroom where the hospital bed is. Each night I joke of our slumber parties and getting used to watching MTV's Real World. Sadie snuggles in this small bedroom too. We do laugh at ourselves in this situation but I am still not comfortable leaving Caitlin downstairs by herself. She has a bell to ring, I have a baby monitor for the room, but I think I still live in fear of her having another stroke and my not being there for her. A day at time and I know that someday things will be different but for today this is where we are at!

Home is Healing!

Just quickly wanted to let you all know that Caitlin has been doing very well being at home. She states she is happy to be home and finds comforts in the familiarity of things. Each time we are doing something I remind her of what type of therapy it is...we laugh at how much movement and activity there is involved in daily functioning at home. We made cookies and while Caitlin was licking the beaters she was laughing. She typed that she was strengthening her tongue muscles! She is into healing and helping herself. Her transfers are stronger each day in and out of the car, her wheelchair, her lounge chair, and onto the commode.
We visited Caitlin's place of employment, Sierra Eye Associates, on Tuesday. It was so heartfelt to see Caitlin surrounded by all her colleagues. She was in the middle of a huge circle of smiles and hugs. It is always so amazing to know how loved Caitlin is by everyone there. On the way home she suggested we go shopping for some more sweats for her. We went to Kohl's! Nothing stops that girl from shopping. It was a fun outing. Today the outing to get blood work done and the quick visit to my school was not quite as fun. Therapies have gone well the two times Caitlin has attended so far. It seems as if her schedule will be Monday, Wednesday, and Friday mornings for three hours each day. This schedule will be paired with the necessary trips to the coumadin clinic where Caitlin gets her blood taken and an INR level checked. Coumadin is a blood thinner necessary to prevent another stroke from occurring. The INR level determines the correct level of the drug in Caitlin's blood. This week we had to have it checked three times.
We also had to make appointments with every type of doctor that Caitlin needs to continue seeing. It has been a full time job getting all this arranged. Needless to say I have been a bit overwhelmed with keeping on top of everything. But as I keep telling Caitlin, so much of stroke recovery is temporary as things will keep changing, I too need to remember this. We are gracefully beginning our journey down a new and exciting path! Thanks for joining in with us!

WE ARE HOME!

I am rejoicing in the glory of the day! Caitlin will start out patient therapies tomorrow and as each day comes we will figure out our routines and abilities of functioning at home. Caitlin's homecoming was a tear and a smile all rolled into one. We will carry the love and friendship of all we met at the hospital and cherish the memory of each and every person and the wonderful care they gave Caitlin. Our circle of friends has expanded in a very precious way. Please come celebrate with us at our house or call on the home phone (775-747-1391) to congratulate Caitlin on this huge step. Caitlin would love to hear your voice or see your face, even better! Caitlin is still communicating with gestures and frantic typing on her portable keyboard but she does have lots to say! WE ARE HOME!!!! YEAH!

Getting Stronger Every Day!

Take a look at the new pictures posted here today...that's my girl!!! She has been working so hard each day and it really, really shows. Caitlin has made a new friend at the hospital who seems to be an inspiration to her as well! Bill was injured in a skiing accident right after Christmas. He arrived on the rehab floor last week, is highly motivated in his recovery, and Caitlin took notice. They have been in physical therapy at the same time and a beautiful friendship has been born! Caitlin has been cruising around in an electric wheelchair and enjoying her independence. Last Saturday morning I was reading the newspaper and realized Caitlin hadn't come back into her room. I went looking for her and there she was in the therapy room "coaching" Bill through his therapy. He has been a great reinforcer for Caitlin's successes the past few days. His cheering Caitlin on is so heartwarming. He calls himself "Uncle Bill"! Both he and his wife, Jill, and his entire extended family have been so sweet to Caitlin. The cheering for Caitlin by the therapists and the nurses has been huge in keeping that smile on her face while she works her heart out. Sometimes there are tears in the process but it seems Caitlin bounces back and continues to work hard. Each day I am amazed to see what Caitlin can accomplish.
My friend, Susan, came up to work a bit with Caitlin to get her voice going with music. Caitlin and Susan were listening to the music from Mama Mia and Caitlin was moving her lips to the beat of the music a bit. Susan wants Caitlin to visual her vocal cords moving each day and work with the music. So, Caitlin and her dad are doing this in the evening. Can you just see Tim singing the Dancing Queen? Of course, he is and Caitlin is giggling the whole way through! It was so interesting to watch Caitlin moving her mouth while trying to get those sounds out! She was moving her tongue with correct placement. This was great in the fact that she couldn't move her tongue anywhere after the second stroke. We had read that some stroke patients can sing even when they can't talk yet and this inspired Caitlin, for sure!
Caitlin just keeps smiling her way through each day and bringing a smile to the faces of many others at the hospital...especially me!

Busy Days and Tired Nights!

Caitlin has been busy with her life in Acute Rehab. She has definitely enjoyed adding water therapy to her routine twice a week. As long as this is added at the end of her day she can return to her room and crash. If water therapy is in the morning she has a hard time staying awake during her other therapies.
Caitlin has been using an electric wheelchair to cruise around on the rehab unit. She does quite well steering it and trying to maintain a slow enough speed. You can get going a little too fast rather quickly...I accidentally did that on my test ride! It currently is in the plan for Caitlin to have an electric wheelchair of her own. Apparently, they are customized and can be quite an elaborate creation. It will be nice for Caitlin to have a greater sense of independence with this wheelchair.
Yesterday Caitlin and I came home for an hour with Roger (PT) and an assistant, Mel. They came to do a home evaluation so that we could see what adaptations we would need to make in order for Caitlin to spend time at home. I was so excited to put Caitlin in my car and walk her into the house. Our friend, John Christensen, built a ramp so we could get in the front door very nicely. It was just so nice to see Caitlin in the living room with a smile on her face. Sadie, our dog, had her head in Caitlin's lap while Caitlin patted her head. Amazing how dogs just seem to know what we all need, lots of love! It seems as if there are minor things to do in our home to get it ready. We learned that we have to have two exits with ramps to meet ADA regulations. I have been moving furniture around to figure out wheelchair accessibility and make it feasible for Caitlin to function in our home. I have also been looking into a recliner chair that is powered by a remote that Caitlin could use herself. The chair will get her to an almost standing position which would make transferring her to the wheelchair much easier. All these things bring an element of excitement as well as fear of what lies ahead. I still have much to learn about transferring Caitlin and we need to learn how to work together to do this.
As I prepare our home I have also been looking at information of neuro rehab facilities in Las Vegas. The case manager at the hospital has been looking into what alternatives would provide the best opportunities for Caitlin's recovery as well. It is all a bit overwhelming and confusing at this point. Caitlin will continue to need intensive therapy in all areas for quite some time but we don't know if what Reno has to offer will be extensive enough. It is a roller coaster ride of emotion to say the least. Each day is different and unpredictable in many ways. But the bottom line always is I am so proud of all Caitlin has accomplished!

The Start of Another Week

Caitlin finished up the week with another trip to the therapy pool on Thursday. She smiles with exhaustion when it is finished. The trip to the pool is quite a big outing as Caitlin has to go out of the hospital and across the street which means getting a coat on and off and then getting changed out of wet swimming clothes in the locker room. I am not sure any of us ever thought how much work all the every day stuff is. I am very hopeful that the water therapy continues this coming week as well. Caitlin's right arm seems to be more relaxed afterwards and she definitely points it out to me with a smile. The muscle tonicity in that right arm causes it to be very tightly clenched to her chest. This week she also began wearing an air splint on the right arm. This entails straightening her arm out and encasing it in a tube that is the length of her arm. The tube is blown up around her arm and holds it straight. She wears it a few hours each day until it becomes uncomfortable. Her arm gets hot inside this and you can see the frustration on her face while this is on. You definitely know when it is time to take it off.
Caitlin has enjoyed reading text messages on her phone but hasn't really done much as far as responding. She smiles as she reads each one but then turns her phone off. We will continue working on the texting but it seems to be a more difficult task than I thought it would be. In the meantime she is having fun with the DynaVox. Caitlin's fingers are moving quickly over the keyboard that has now been attached to the machine. She will type messages for people and then when they walk by in the hallway she hits the talk space. They always seem to be wondering where the voice has come from. This has been fun for her and gotten many laughs from others.
Weekends are hard in that the whole acute rehab floor is very, very quiet in comparison to the week's activity. Yesterday Caitlin and I took a walk down the hallway and it really felt like we were in a morgue. She had tears running down her cheeks and the loneliness was very overpowering for both of us. We try very hard to keep things going to cheer her up but still that quiet seems to take over. Today Kim, a CNA who Caitlin adores, is having a beauty day with Caitlin. They are doing her nails and straightening her hair. I will attempt to take her outside for a walk in the wheelchair. The temperatures are in the 50's and it is just beautiful in the sunshine. In my heart I just wish so badly that I could put her in the car and drive her up to Tahoe. The snow on the mountains paired with the blue sky are a favorite of Caitlin's. I know this is definitely something to look forward to! Monday begins Caitlin's 13th week in the hospital and I am beginning to look at more than just today. I have to look at what adaptations to our home that we will need to make to bring Caitlin home when the time comes. We are also researching and looking at what will be the best decisions for Caitlin's recovery when she does get released from the hospital. Those decisions will be huge when the time comes. But for today I am taking a deep breath and headed out to make it the best day possible! Have a good one too!

A Very Proud Caitlin!

Yesterday when I got to the hospital Caitlin was in bed with a huge grin on her face. She pointed to the DynaVox, an electronic communication device on which she types messages and then can have it speak for her, and was insistent I push the correct spot for talking. The message she had typed for me said, "I walked fifty feet with Roger today!". I was so excited! Soon I heard many cheers from the nurse, CNA, and wife of another patient that Caitlin had been walking with the assistance of a physical therapist on both sides. Of course with Roger and Loren on either side Caitlin was in her glory! It really did happen and Caitlin was glowing with pride!
Today, Caitlin got wheeled over to the therapy pool at St. Mary's Fitness Center and had her first hour of in the water therapy. It was more happy moments. Caitlin's trust and confidence in the physical therapists is phenomenal. Paul, put her into a chair that gently glides one down into the heated pool. He then had a floating device around her neck and another floating pad under her hips. He held her as she floated in the water. That grin and wide eyed look lasted the entire hour she was in the pool. Paul had Caitlin moving her left leg and using it to move her right leg as well. He worked on relaxing Caitlin's right arm which is usually clenched to her chest unless someone straightens it out for her. It was so exhilarating to watch this therapy take place. Caitlin's cousins, Brett and Rachel, were in Reno overnight to see Caitlin before they flew back east to their respective colleges. They sat in the very hot room of the heated pool with me as we watched. In Caitlin's honor we were sweating quite a bit! We were also laughing quite a bit because as Caitlin was being taken out of the pool the women in the adjacent water aerobics class were all watching Caitlin as they were doing an exercise moving their arms up and down. I told her they were cheering for her. They picked up on it and all the women were working hard at waving their arms up and down while smiling big at Caitlin. It was just priceless!
We continue to attempt to get Caitlin to eat more. She isn't very fond of protein powder added to food. She is liking some soups these days which is a great diversion from the smoothies but doesn't pack in the calories. We now understand more that her tongue isn't strong enough on the right side for her to move food from side to side. This is necessary to get food to the back of the throat to swallow. Also, when food gets stuck on the roof of Caitlin's mouth she doesn't have the tongue strength to get it off. On a positive note though, Caitlin is drinking quite well from a cup which definitely helps the intake of fluids. Her favorite is an orange julius type drink her dad has been making her in the Magic Bullet. She then drinks from the Magic Bullet mug. Watching her sit with her left leg crossed over right leg with her face buried in the mug as she concentrates on drinking is such a happy sight. Each day Caitlin is coming back stronger and stronger. She is laughing and joking with everyone on the Acute Rehab Unit. What a great group of people they are! It is so wonderful to walk into Caitlin's room and see her surrounded by laughter, love, and encouragement! It does feel so very good to be celebrating Caitlin's accomplishments with her!

Happy New Year!

Last night as I left Caitlin I walked out of the hospital feeling so very hopeful and amazed at her day. I had listened to her laughing, watched her smiling with an ear to ear grin, observed her writing a long note of her own initiation to the physical therapist, had her show off for her neurologist by bringing her left leg up across the bed and give him a gentle kick and a high five with her left hand, watched her type on the keyboard to inform me of the condition of a patient across the hall that we were concerned about, and that wasn't all of it. So many little things occurred all day long and actually all week long that the list just keeps going on and on. Caitlin gets really frustrated when she isn't able to communicate or I should say when others don't understand her but that happens less and less. We are learning to understand her gestures and expressions quite well. Especially that "Caitlin look" when she thinks you are totally ignorant...one I saw frequently in previous years...but then again I am the mom! On Friday Caitlin is going to add "in water" physical therapy to her "on ground" therapy schedule. They are going to hoist her down into a very warm therapy pool to work on reducing the muscle tonicity on the right side of her body. They are going to give it a try to see how it works and if Caitlin likes doing this. Caitlin's physical therapist, Roger, is just amazing in what he gets Caitlin to do. They really do work well together and you can tell she completely trusts in everything he says. The success of her movement is totally grounded in that relationship. Whatever Roger says, we all must do...the rules according to Caitlin! Roger will not be doing the water therapy but his colleagues will and since he is supportive of this I am sure Caitlin will give it her best effort!
Caitlin will begin attempting to use her cell phone today. If you would like to send her a text message I do believe she may be ready to answer it. The way she is keyboarding lends me to believe that the cell phone will be extremely motivating as well. Her cell phone # is 775-560-6164 in case you don't have it! I can only ask graciously ask that everyone keep praying and holding positive thoughts for Caitlin during 2009!