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!
Saturday, April 25, 2009
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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