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!
Thursday, June 4, 2009
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!
Wednesday, March 18, 2009
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!
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!
Wednesday, March 4, 2009
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!
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!
Monday, February 23, 2009
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!
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!
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