I hate that it has been so long since I've posted and I hate how much I have to catch up on. But catching up is on my todo list. What is keeping me from it is the fact that I am STILL unpacking. Honestly nearly a month later and still have boxes piled around me as I type this.
One thing hard about moving within town is you still have life to continue with. Unlike when you move from a different state (which is what we have done twice) we still had play dates, school, meetings, appointments, and general busyness.
The house we moved into is nice but needed/needs some work. It's a hard line because it's a rental so we don't want to put money into it but we will be living here for at least a year so I want to make it nice. And it's been the need for some updates that has made unpacking slow. I couldn't unpack the bedroom closet until the closet was patched (15 molly bolts and even more holes), painted, and new shelves put in. Which requires at least one but most likely two visits to Home Depot. Then I couldn't unpack the bathroom until...and the office until...and kitchen until...the kids can't play outside until the yard is cleared...etc. It's been slow but it's coming along. Also as I have been unpacking I've been repeating the words "do I need it, do I love it, can I easily replace it". I've been really trying to downsize and lighten our load. I'm going to have a garage sale in a few weeks. It will feel great getting rid of so much stuff and fluff we don't need.
For the last few years I had been preparing us for a very different life. But I am done planning and waiting for our "someday". I'm not going to hold on to items for the hope of someday needing them. It's not that I have given up hope for a "someday" but I'm done waiting for it. We are living in today and now. We have a good life now. Rob is recovering. We are in a great house in a great neighborhood. The kids are well and busy. Life is good. I am so grateful for all that we have been blessed with. We are so blessed. I can feel the Lord watching over us and guiding our life and decisions. Although this isn't the life we have been planning for but this is the Lord's plan for us and it's going to be good. I have great hope for our future. Like I've said before, something grand has to come from this.
Tuesday, May 22, 2012
Sunday, May 6, 2012
We moved and Rob's Family Conference
We are almost done unpacking in our new house! The move went great! We had so much help from friends and absolutely couldn't have done it without them. Rob's mom came to help too and that was amazing. She was SO much help and I really enjoyed having the company too. I didn't realize how lonely I get during the day. I was really sad so have her leave.
I feel so blessed to have be lead to this house. So far one of my favorite things about it being able to go on walks with the boys in the neighborhood. We used to go for walks around our apartment complex and the parking garage, not very fun, but we LOVE our neighborhood. In fact last week we went for a walk to the park at the end of our street and I literally almost started crying I was so happy. I have wanted this for years. It's been great!
Another favorite is the garage. It is heaven to be able to have the kids just walk out to the car. In our apartment it was begging them to follow me down the long hall and then not run into the parking garage to get hit by a car and get in our car. Stressful every time. I love our garage! I wish I could say they boys have enjoyed the backyard but we have fire ants and every time they go out they find another mound. I've had the bug guy come once already but will have him come again. Part of the problem is there are dead leaves everywhere (the last tenet didn't take good care of the place and the house manager is kind of a jerk about fixing stuff) so I can't see the mounds until the russel up the leaves. Hopefully we can get the ants under control soon. The boys are dying to play outside. Overall it's been a great change and finally feel like we're moving forward.
FAMILY CONFERENCE
Rob had a family conference last Monday, April 30th. At first the plan was for Norma (Rob's mom) to stay home with the boys so I could go, but a dear friend suggested she watch the boys so Norma could go with. Duh! Why didn't I think of that! Norma wanted to see his rehab when Rob first started going in October but it just didn't work out. I was glad she got to come and meet his therapists and see the facility. I just have to say again how grateful we are for his rehab. We feel so blessed to have a facility like this so close and they are all so great.
Here's the notes:
Occupational Therapy-
They are been working on fine motor skills a lot and have been doing some tough sensory therapy. They have been using a bin full of three different kinds of past that are all different shapes and then 16 small beads in the bin. Rob has to use his right hand (affected hand) with a medical examination glove on and try to find the beads. He does this for 30 min at a time. At first he found 4 and now found 6. His tolerance for the activity has improved also.
(I can't imagine how frustrating that must be to do that for 30 min. Rob is so tough and such a dedicated person)
One of the therapists made a mouth out of beads and a mask for Rob to work on to practice of fine motor skills and to work towards getting back to work. He works on that using a dental mirror. They named it "Eric". :) It looks kind of freaky but it's helping Rob.
Physical Therapy-
Rob has used a rolling stool to help him get used to working with one since that's what he will use while doing endo.
Rob took a "Hi Level Mobility Assessment" (Hi Mat) test. This is to measure his coordination, balance, and agility. Rob did really well on this test and has really improved since when he first took it in February. The activities on the test are walking, walk backwards, toe walk, walk around brick, run, skip, hop forward on one food, bound (from left), bound (from fright) stairs up, and stairs down. They are all timed tests. Rob scored well on everything except skipping, hopping forward, and stairs. But was only off by a few seconds on each. They'll keep retesting him but he went from a 26/54 in Feb, a 37/54 in March, and 47/54 in April. He is making great progress and I'm so proud of him.
They have also worked on balance on the right leg. He can balance 4-6 seconds with his eyes closed so will continue to work on that. Also his calf strength on the right leg.
One HUGE accomplishment is that Rob ran 30 minutes straight out side, almost 3 miles!! AMAZING!! Whenever he does something like that I can't help but think of the doctor that told me Rob would be paralyzed on the right side. Actually how it happened is when they wanted to put a coil in to stop the bleeding in his brain they asked if he was moving his right leg. He hadn't moved it. The doctor said, "oh okay, the leg is already gone, because where the coil goes would probably make it paralyzed, but it's already gone." I'm just so amazed every time I see him walk or run! So blessed!
They want Rob to start trying to run in our new neighborhood.
Speech Therapy-
Rob has been working on R/L objects as they relate to him. (ie- the book is on my left)
Also been workin on R/L as he relates to the object. (ie-I am to the left of the book) This has been really tricky but Rob had an "ah-ha!" moment which has made it easier. It was just a different way of thinking of the object.
Research Study-
Rob continues to show improvement in the activities and they keep trying to find ways to challenge him. Right now he is doing verbal math and R/L activities.
One thing all therapists agree on is that Rob works very hard. If there is a task he can't tackle he will ask "How do I?" Rob just works so hard. I dont' know how he does it without hardly complaining. I love him so much. It is so hard to see him struggle with things that used to be so easy. But constantly so proud of him.
Electroencephalogram (EEG)-
Rob had his first EEG last Friday. He had it done to get a baseline and as a first step towards getting off seizure meds. The problem with doing this test is that he is still on seizure meds so it probably won't show that he has any abnormalities to need meds. But if it does then at least we know he has to be on them forever, not that it's what we want but it would take the question out of it.
The test took three hours. Rob was just hooked up to electrodes on his head and laid there. I got to sit in the waiting room with a laptop for three uninterrupted hours. Kind of heavenly after the last few weeks I've had (packing our whole house and moving). I got updated on my emails, which may seem like a small thing, but I had 237 emails in my inbox. I usually have enough time to quickly check my inbox but not much time to actually read, respond, and clear out old stuff. It felt good to be quite and not have anywhere else I needed to be. But I digress, the EEG test was fine. Rob said the first half took forever but the second half went quickly. We will get the results this week from the neurologist dr that I didn't like much.
So that's a little catch up on Rob's rehab. It's been 265 days or 8 months and 21 days since Rob's stroke. Rob is doing really well. He has a lot of recovery to go but he works so hard I know he will everything he can to do it.
I feel so blessed to have be lead to this house. So far one of my favorite things about it being able to go on walks with the boys in the neighborhood. We used to go for walks around our apartment complex and the parking garage, not very fun, but we LOVE our neighborhood. In fact last week we went for a walk to the park at the end of our street and I literally almost started crying I was so happy. I have wanted this for years. It's been great!
 |
| Boys riding their balance bikes in our neighborhood |
FAMILY CONFERENCE
Rob had a family conference last Monday, April 30th. At first the plan was for Norma (Rob's mom) to stay home with the boys so I could go, but a dear friend suggested she watch the boys so Norma could go with. Duh! Why didn't I think of that! Norma wanted to see his rehab when Rob first started going in October but it just didn't work out. I was glad she got to come and meet his therapists and see the facility. I just have to say again how grateful we are for his rehab. We feel so blessed to have a facility like this so close and they are all so great.
Here's the notes:
Occupational Therapy-
They are been working on fine motor skills a lot and have been doing some tough sensory therapy. They have been using a bin full of three different kinds of past that are all different shapes and then 16 small beads in the bin. Rob has to use his right hand (affected hand) with a medical examination glove on and try to find the beads. He does this for 30 min at a time. At first he found 4 and now found 6. His tolerance for the activity has improved also.
(I can't imagine how frustrating that must be to do that for 30 min. Rob is so tough and such a dedicated person)
One of the therapists made a mouth out of beads and a mask for Rob to work on to practice of fine motor skills and to work towards getting back to work. He works on that using a dental mirror. They named it "Eric". :) It looks kind of freaky but it's helping Rob.
 |
| Mask and mouth Rob uses for therapy. "Eric" |
Physical Therapy-
Rob has used a rolling stool to help him get used to working with one since that's what he will use while doing endo.
Rob took a "Hi Level Mobility Assessment" (Hi Mat) test. This is to measure his coordination, balance, and agility. Rob did really well on this test and has really improved since when he first took it in February. The activities on the test are walking, walk backwards, toe walk, walk around brick, run, skip, hop forward on one food, bound (from left), bound (from fright) stairs up, and stairs down. They are all timed tests. Rob scored well on everything except skipping, hopping forward, and stairs. But was only off by a few seconds on each. They'll keep retesting him but he went from a 26/54 in Feb, a 37/54 in March, and 47/54 in April. He is making great progress and I'm so proud of him.
They have also worked on balance on the right leg. He can balance 4-6 seconds with his eyes closed so will continue to work on that. Also his calf strength on the right leg.
One HUGE accomplishment is that Rob ran 30 minutes straight out side, almost 3 miles!! AMAZING!! Whenever he does something like that I can't help but think of the doctor that told me Rob would be paralyzed on the right side. Actually how it happened is when they wanted to put a coil in to stop the bleeding in his brain they asked if he was moving his right leg. He hadn't moved it. The doctor said, "oh okay, the leg is already gone, because where the coil goes would probably make it paralyzed, but it's already gone." I'm just so amazed every time I see him walk or run! So blessed!
They want Rob to start trying to run in our new neighborhood.
Speech Therapy-
Rob has been working on R/L objects as they relate to him. (ie- the book is on my left)
Also been workin on R/L as he relates to the object. (ie-I am to the left of the book) This has been really tricky but Rob had an "ah-ha!" moment which has made it easier. It was just a different way of thinking of the object.
Research Study-
Rob continues to show improvement in the activities and they keep trying to find ways to challenge him. Right now he is doing verbal math and R/L activities.
One thing all therapists agree on is that Rob works very hard. If there is a task he can't tackle he will ask "How do I?" Rob just works so hard. I dont' know how he does it without hardly complaining. I love him so much. It is so hard to see him struggle with things that used to be so easy. But constantly so proud of him.
Electroencephalogram (EEG)-
Rob had his first EEG last Friday. He had it done to get a baseline and as a first step towards getting off seizure meds. The problem with doing this test is that he is still on seizure meds so it probably won't show that he has any abnormalities to need meds. But if it does then at least we know he has to be on them forever, not that it's what we want but it would take the question out of it.
The test took three hours. Rob was just hooked up to electrodes on his head and laid there. I got to sit in the waiting room with a laptop for three uninterrupted hours. Kind of heavenly after the last few weeks I've had (packing our whole house and moving). I got updated on my emails, which may seem like a small thing, but I had 237 emails in my inbox. I usually have enough time to quickly check my inbox but not much time to actually read, respond, and clear out old stuff. It felt good to be quite and not have anywhere else I needed to be. But I digress, the EEG test was fine. Rob said the first half took forever but the second half went quickly. We will get the results this week from the neurologist dr that I didn't like much.
So that's a little catch up on Rob's rehab. It's been 265 days or 8 months and 21 days since Rob's stroke. Rob is doing really well. He has a lot of recovery to go but he works so hard I know he will everything he can to do it.
Thursday, April 19, 2012
We Are Still Here!
No, I haven't fallen off the face of the earth. Nor have I forgotten about this blog. It's just been a super busy few weeks. Easter, Rob's birthday, and now packing. We have SO much stuff, I see a garage sale in my future. We move next Saturday!!
So while I'm on a little break please take time to read the blogs on my side bar. They are a few people I have come in contact with or know personally that are going through trials or are recovering from a trial. They are all beautiful people and I have relied on their strength so much through this. Please check them out.
One thing I have realized through all of this is that we are all fighting a fight. I wrote about some of this back here. Some are more visible than others but we are all going through trials. I really try to never judge anyone if they are being rude or unkind because they may have more on their plate then they can handle. They might be going through the trial of their life too. I guess the moral of this story is let's all be gentle and forgiving with one another.
I will write more soon and have SO many pictures to post. I love you all!
So while I'm on a little break please take time to read the blogs on my side bar. They are a few people I have come in contact with or know personally that are going through trials or are recovering from a trial. They are all beautiful people and I have relied on their strength so much through this. Please check them out.
One thing I have realized through all of this is that we are all fighting a fight. I wrote about some of this back here. Some are more visible than others but we are all going through trials. I really try to never judge anyone if they are being rude or unkind because they may have more on their plate then they can handle. They might be going through the trial of their life too. I guess the moral of this story is let's all be gentle and forgiving with one another.
I will write more soon and have SO many pictures to post. I love you all!
Sunday, April 8, 2012
Rob Update
So in my last post I said I would be writing about Rob's family conference the next day. What I meant to say was it will be a week until I have time/energy to write about Rob's family conference. So that's today and I'm right on track.
Rob has changed teams at rehab about three weeks ago. There are three different teams, the first level is re-learning basic daily skills (getting dressed, managing medications, walking, getting up off the floor, etc). Rob started on that team in October. Then was moved to the middle team where they start to do more intense speech therapy, cognition, processing, and physical therapy. Now he's on the third level where they work on getting the patient back to work. Another difference in the teams is the amount of distraction, in level 1 it's very quiet and one-on-one, in level 2 there is a radio playing, and level 3 there is a movie playing all the time. This is to help the patients learn to work while there are distractions which when working towards getting back to work and real life makes sense. Also the level of therapist time is different. Rob is mostly working on his own now. He has some time with each therapist and they give him assignments but he completes most tasks on his own. Also in level 3 there is a vocational therapist which finds ways to simulate the patients profession. I'll get into that more in a minute.
I'm happy for Rob to move up a level. It's a big accomplishment and I think helps Rob see the progress he's made. But I'm sad because we both really liked the therapists on level 2.
Here are my notes from the meeting:
Occupational Therapy - Working on fine motor coordination (paint by number with loupes, legos), will continue to find ways to challenge Rob. Will start doing a welding exercise that has some standardized testing scores.
Vocational Therapy - Will start working on financial activities (prior to Rob's injury he took care of all of our financial stuff, now I do it all, he wants to start helping again). Rob has been preparing for a diagnosis simulation activity for later in the week.
Physical Therapy - Work on remaining impairments. Balance on right leg, calf strength, arm strength. Will start working with a rolling stool since that is what Rob would use at work. Also have Rob sit on a balance ball during other activities.
Speech Therapy - working on math. Rob's math has improved a lot but he still gets caught up with problems involving the number 9. He usually can do the first 3-4 problems really well then a wall goes up and it's really difficult. Also working on following verbal commands and right/left.
Research Project - Rob has still been participating in a research study where they place electrodes on Rob head and ask him questions while measuring the blood flow in his brain. They do questions like finger labeling with eyes open or closed, object naming, and line orientation. This doesn't help Rob or give any diagnosis for Rob but will hopefully help someone else with an acquired brain injury.
And that's it for this conference. Not as long as before because it is a new team and they had only been working with Rob for two weeks. Rob has made amazing improvement since he started there six months ago. I'm so proud of him and all of his hard work.
Last Thursday Rob did a mock patient diagnosis exercise. He had x-rays of teeth with Endo problems. Some of the staff volunteered to be "patients" and have Rob diagnosis what was wrong. The would explain the diagnosis to the patient and treatment options. Rob said it went very well and two "patients" had real questions about their teeth that Rob answered. I am so happy for Rob. This is a huge step in the right direction. It's still unsure if he will return to work but he's working so hard to get there. Rob wore his scrubs that day I don't think they have ever looked so good on anyone. I cried a little when I saw him in them because for awhile I thought he would never wear them again. It's something little that means so much to me and a visual conformation that Rob is doing well.
A couple weeks ago Rob had an appointment with a Neurologist. This was to find out options of getting Rob off the seizure medication he's on. With all the doctors we've see this was the first one that I wasn't a fan of. I expected to go in and have a laid out plan of what needs to be done to see if Rob could be taken off. But instead the doctor was wishy-washy and almost left it up to us of what to do. I was a little frustrated. I guess being taken off seizure meds is kind of a big deal because there is no way of knowing if Rob will have a seizure without them. So for now the plan is to do an EEG (brain wave scan) now and then reevaluate in six months. It might be a couple years before we can really talk about stopping the meds. We were bummed. We are so grateful that Rob is on only one medication but he would really like none at all. So that's that.
Rob also had an eye exam this month. 20/20 vision! I still find that truly remarkable. Rob said not being able to see was one of the hardest parts. I can't imagine how hard that must have been to wake up disoriented from the brain injury, meds, and then to not be able to see too. I can't imagine. We are so grateful for his vision and feel so blessed for it. Also so blessed to be with an amazing eye doctor. Just so blessed!
Rob has been going to school two hours a week for a treatment planning class. I think he really enjoys going and being around endo stuff. I am so glad we stayed in Texas to give Rob the opportunity to have the school close. They are all so wonderful there and have been such a support to Rob and I. I really appreciate all of them.
A few weeks ago I got caught up in wanting a "plan" for Rob returning to endo. It's going to be a tricky thing to make happen. How will he be able to return to working without working on patients? If he is able to go back to school would he need to pay tuition? Would he have to complete the whole program again? Is there scholarships? How will we sustain ourselves? A lot of big questions. But I came to the conclusion that it's WAY to early to be thinking about these things. Rob still has a long way to go before he's ready for any of that. But me, being me, wanted a plan. Again I just need to be patient with Rob's recovery and know that this is a process. I also have a strong testimony that the right people and situations will be laid out for Rob to return to work if/when that is possible. So I can't worry about any of this now but wait for the right time.
It's Rob's birthday on Wednesday!! I'm so happy we get to celebrate his birthday! It's going to be a good one.
Rob has changed teams at rehab about three weeks ago. There are three different teams, the first level is re-learning basic daily skills (getting dressed, managing medications, walking, getting up off the floor, etc). Rob started on that team in October. Then was moved to the middle team where they start to do more intense speech therapy, cognition, processing, and physical therapy. Now he's on the third level where they work on getting the patient back to work. Another difference in the teams is the amount of distraction, in level 1 it's very quiet and one-on-one, in level 2 there is a radio playing, and level 3 there is a movie playing all the time. This is to help the patients learn to work while there are distractions which when working towards getting back to work and real life makes sense. Also the level of therapist time is different. Rob is mostly working on his own now. He has some time with each therapist and they give him assignments but he completes most tasks on his own. Also in level 3 there is a vocational therapist which finds ways to simulate the patients profession. I'll get into that more in a minute.
I'm happy for Rob to move up a level. It's a big accomplishment and I think helps Rob see the progress he's made. But I'm sad because we both really liked the therapists on level 2.
Here are my notes from the meeting:
Occupational Therapy - Working on fine motor coordination (paint by number with loupes, legos), will continue to find ways to challenge Rob. Will start doing a welding exercise that has some standardized testing scores.
Vocational Therapy - Will start working on financial activities (prior to Rob's injury he took care of all of our financial stuff, now I do it all, he wants to start helping again). Rob has been preparing for a diagnosis simulation activity for later in the week.
Physical Therapy - Work on remaining impairments. Balance on right leg, calf strength, arm strength. Will start working with a rolling stool since that is what Rob would use at work. Also have Rob sit on a balance ball during other activities.
Speech Therapy - working on math. Rob's math has improved a lot but he still gets caught up with problems involving the number 9. He usually can do the first 3-4 problems really well then a wall goes up and it's really difficult. Also working on following verbal commands and right/left.
Research Project - Rob has still been participating in a research study where they place electrodes on Rob head and ask him questions while measuring the blood flow in his brain. They do questions like finger labeling with eyes open or closed, object naming, and line orientation. This doesn't help Rob or give any diagnosis for Rob but will hopefully help someone else with an acquired brain injury.
And that's it for this conference. Not as long as before because it is a new team and they had only been working with Rob for two weeks. Rob has made amazing improvement since he started there six months ago. I'm so proud of him and all of his hard work.
Last Thursday Rob did a mock patient diagnosis exercise. He had x-rays of teeth with Endo problems. Some of the staff volunteered to be "patients" and have Rob diagnosis what was wrong. The would explain the diagnosis to the patient and treatment options. Rob said it went very well and two "patients" had real questions about their teeth that Rob answered. I am so happy for Rob. This is a huge step in the right direction. It's still unsure if he will return to work but he's working so hard to get there. Rob wore his scrubs that day I don't think they have ever looked so good on anyone. I cried a little when I saw him in them because for awhile I thought he would never wear them again. It's something little that means so much to me and a visual conformation that Rob is doing well.
A couple weeks ago Rob had an appointment with a Neurologist. This was to find out options of getting Rob off the seizure medication he's on. With all the doctors we've see this was the first one that I wasn't a fan of. I expected to go in and have a laid out plan of what needs to be done to see if Rob could be taken off. But instead the doctor was wishy-washy and almost left it up to us of what to do. I was a little frustrated. I guess being taken off seizure meds is kind of a big deal because there is no way of knowing if Rob will have a seizure without them. So for now the plan is to do an EEG (brain wave scan) now and then reevaluate in six months. It might be a couple years before we can really talk about stopping the meds. We were bummed. We are so grateful that Rob is on only one medication but he would really like none at all. So that's that.
Rob also had an eye exam this month. 20/20 vision! I still find that truly remarkable. Rob said not being able to see was one of the hardest parts. I can't imagine how hard that must have been to wake up disoriented from the brain injury, meds, and then to not be able to see too. I can't imagine. We are so grateful for his vision and feel so blessed for it. Also so blessed to be with an amazing eye doctor. Just so blessed!
Rob has been going to school two hours a week for a treatment planning class. I think he really enjoys going and being around endo stuff. I am so glad we stayed in Texas to give Rob the opportunity to have the school close. They are all so wonderful there and have been such a support to Rob and I. I really appreciate all of them.
A few weeks ago I got caught up in wanting a "plan" for Rob returning to endo. It's going to be a tricky thing to make happen. How will he be able to return to working without working on patients? If he is able to go back to school would he need to pay tuition? Would he have to complete the whole program again? Is there scholarships? How will we sustain ourselves? A lot of big questions. But I came to the conclusion that it's WAY to early to be thinking about these things. Rob still has a long way to go before he's ready for any of that. But me, being me, wanted a plan. Again I just need to be patient with Rob's recovery and know that this is a process. I also have a strong testimony that the right people and situations will be laid out for Rob to return to work if/when that is possible. So I can't worry about any of this now but wait for the right time.
It's Rob's birthday on Wednesday!! I'm so happy we get to celebrate his birthday! It's going to be a good one.
Sunday, April 1, 2012
Just like that night...
A couple nights ago Rob and I were sitting on the couch and talking about the new house. We talked about how excited we are. We talked about what needs to be done before we move. We are so excited and have so much to look forward to.
But during that conversation I had a déjà vu back to the night of Rob’s stroke. It felt just like that night. We were sitting in the same places on the couch and having the same conversation. We talked about our house in Denver and made a list of everything we needed to do before we moved. We talked about Rob’s great job, Mannix’s preschool, and all the wonderful things ahead of us.
Then we went to bed and Rob had his stroke. Everything changed in an instant.
I know I talk about those plans a lot. I’ve obviously had a very hard time letting them go. I think it’s because they had become such a part of me. It was eight years of work going into those plans. For so long we didn’t know what our future was going to be. Was Rob going to get into Dental School? Was Rob going to be accepted to an Endo program? Was he going to find a job? We were finally to the end of the unknown. We knew where we were going to be forever. We weren’t going to be transient people anymore but be on solid ground. It was wonderful to finally have sure plans in our life and to be able to make our own decisions about where we wanted be instead of Rob’s school deciding. I think I finally felt in control of our future.
And now we’re back to square one. Maybe even square negative one. We have no idea what our future is going to be like. I didn’t even know how long to sign the lease on the house. I don’t know how long we are going to be here or where we are going next. I have tried really hard to be okay with that and have patience. Even though there is a lot of unknown I try to focus on the constant things in my life. My family and friends, who I’ve had to rely on a lot during this. I know they will always be there for me, but other than that nothing seems sure. I often wish I could read the last chapter of our story. How is this going to end? There are endless possibilities and perhaps none are more right than others but I just wish I knew what I’m going to be up against.
I feel like I’m in a constant state of excited and sad. I’m so excited for these changes and for moving forward. But so sad that it’s not the move we had originally planned. I miss those plans. I miss being truly joyful and happy. I fear I’m not a very fun person to be around right now, I can’t muster up perkiness and I’m sure I’m just a drag to hang out with. I’ll be doing okay for a while and then it’s like I get punched in the chest and have all the air knocked out of me and I can’t breath. Then it takes me two weeks to bounce back to functioning again. In a way I’m embarrassed that even after seven and a half months I’m still so emotional. I feel like I should be stronger than this and handling this better. I am still going to counseling and it helps a lot. I think I would be much worse off than I am now if I wasn’t talking to someone. I’m so grateful for that resource. I really want to accept this new life and be able to move along with it.
Tomorrow is Rob’s family conference. I can’t believe it’s been a whole month since his last one. Rob has made some great progress this month. I’ll write it all tomorrow night.
I know I have said this many times but I can’t express it enough. Thank you for all the support towards Rob and I. I remember Rob’s neurosurgeon saying that this is a marathon, not a sprint. I’m grateful for the people that have continued to show support and continued to help us. It’s been a long journey already, thank you to those that have kept with us. Going through this has opened my eyes to the wonderful people in this world and solidified my faith in humanity. Thank you so very much!!
Tuesday, March 27, 2012
Family Outing
{02.11.12}
Just like awhile ago we took a trip to a sporting store for a family outing. The kids love it and it's free so we love it!
Fish tank and POP guns are always first.
Yes this is a dog igloo. We are awesome parents.
Tents and cots were next. Then Mannix helped Slade find a pair of shoes. And last the climbing rock ramp.
I love these boys so much!!
Just like awhile ago we took a trip to a sporting store for a family outing. The kids love it and it's free so we love it!
Fish tank and POP guns are always first.
Monday, March 26, 2012
Park Play
{02.09.12}
We love to go to the park! This day Laney joined us. The kids had so much fun and got into so many different messy things. Wood chips, sand, dirt, and grass. They got baths the second we got home. But they had a blast!
Slade is such a big boy going down the slide by himself. And that smile just melts my heart!
Dandelions
We love the park and we love our friends! It was a great day!
We love to go to the park! This day Laney joined us. The kids had so much fun and got into so many different messy things. Wood chips, sand, dirt, and grass. They got baths the second we got home. But they had a blast!
Slade is such a big boy going down the slide by himself. And that smile just melts my heart!
A House!!
We are DONE with this apartment. Just so sick of it! In fact we were done with it a year and a half ago. When Rob had a year left of school our lease was due to resign or move. We decided we hate moving so we would just stick it out until he was done and save a move. When Rob had his stroke we were just weeks away from moving to Denver and into a perfect home there. Then I resigned our lease because I didn’t know what else to do, Rob was in the hospital, they couldn’t give me any kind of prediction of what his recovery would be like so we’ve been here an extra seven months. I love the layout of our apartment and it’s been great for us but we are dying for a backyard and garage. Walking the 97 steps from the parking garage to our door with two kids and groceries may as well be a mile. I loathe that walk more than anything! It almost brings me to tears thinking of pulling into a garage and being able to walk right into the house. And not have to beg the kids to come inside or beg the kids to go to the car. And the thought of a backyard brings me so much joy I can’t even explain. My boys are active and love to be outside and run and play. Even now when we talk about going to one of their friends’ houses Mannix will say “and play in the backyard!” We are all dying for some space!
We have started casually looking for a house to rent and put the word out to our friends. So when I missed two calls from a friend and a text that said “I found you a house! Call me ASAP!” I knew it had to be something good! It is amazing!! It’s in the perfect neighborhood! There is a park, pool, tennis courts, and walking paths just around the corner. The house has 4 bedrooms, 2 bathrooms, laundry room, 2 car garage, and a fenced backyard!! And the rent is less than our apartment! I couldn’t ask for anything more! We are so dang excited!!
The last tenant left the house in pretty bad shape. Since they were planning on repainting and putting in new carpet they are letting us choose the colors! (tan/taupe walls, darker carpet, nothing fancy but kid friendly) The house is older but with some freshening up it’s going to be wonderful!
Then another friend told me about an estate sale last Thursday that had a new refrigerator for a good deal. I got there early and got it! (I think my friend and I just about killed ourselves trying to move it.) Then another friend is giving us a lawn mover and a washer and dryer. AMAZING! And I found patio chairs for a killer deal at a garage sale on Saturday. With how well everything is falling into place I just know this is where we are supposed to be.
We move the beginning of May. It’s going to be a very long month waiting. I haven’t slept well since I saw the house because I just keep thinking about how I want to organize and decorate.
This is so much more than just a house for me. It’s feels like a fresh start. In a way it feels like we are somewhat back on track for our plans. Even though this house is here and not in Denver it’s still moving forward. This apartment has so many great memories in it but also so many bad memories. I can hardly get in bed at night without thinking of the night Rob had his stroke. I don’t know if that will change with a different location, but I sure hope so. It will be so much better for Rob too! There is more room so it will be easier for him to get around and he'll be able to get out easier with the kids by taking them for a walk or something. Our apartment now isn't in a on a very busy street so there isn't much to walk to. It's just going to be good for all of us in so many ways.
We feel so blessed to have been lead to this house. I know Heavenly Father is watching out for us and trying to make this horrible situation better.
May can’t come soon enough!!
We have started casually looking for a house to rent and put the word out to our friends. So when I missed two calls from a friend and a text that said “I found you a house! Call me ASAP!” I knew it had to be something good! It is amazing!! It’s in the perfect neighborhood! There is a park, pool, tennis courts, and walking paths just around the corner. The house has 4 bedrooms, 2 bathrooms, laundry room, 2 car garage, and a fenced backyard!! And the rent is less than our apartment! I couldn’t ask for anything more! We are so dang excited!!
The last tenant left the house in pretty bad shape. Since they were planning on repainting and putting in new carpet they are letting us choose the colors! (tan/taupe walls, darker carpet, nothing fancy but kid friendly) The house is older but with some freshening up it’s going to be wonderful!
Then another friend told me about an estate sale last Thursday that had a new refrigerator for a good deal. I got there early and got it! (I think my friend and I just about killed ourselves trying to move it.) Then another friend is giving us a lawn mover and a washer and dryer. AMAZING! And I found patio chairs for a killer deal at a garage sale on Saturday. With how well everything is falling into place I just know this is where we are supposed to be.
We move the beginning of May. It’s going to be a very long month waiting. I haven’t slept well since I saw the house because I just keep thinking about how I want to organize and decorate.
This is so much more than just a house for me. It’s feels like a fresh start. In a way it feels like we are somewhat back on track for our plans. Even though this house is here and not in Denver it’s still moving forward. This apartment has so many great memories in it but also so many bad memories. I can hardly get in bed at night without thinking of the night Rob had his stroke. I don’t know if that will change with a different location, but I sure hope so. It will be so much better for Rob too! There is more room so it will be easier for him to get around and he'll be able to get out easier with the kids by taking them for a walk or something. Our apartment now isn't in a on a very busy street so there isn't much to walk to. It's just going to be good for all of us in so many ways.
We feel so blessed to have been lead to this house. I know Heavenly Father is watching out for us and trying to make this horrible situation better.
May can’t come soon enough!!
Sunday, March 25, 2012
Valentines Package
{02.14.12}
Grandma and Grandpa Hale sent the boys a special package for Valentines. They are so thoughtful!
The kids got a play kitchen for Christmas so these are to help them be true chefs! So cute!
Thanks Grandma and Grandpa Hale!
Grandma and Grandpa Towers and Aunt McCall sent a package too. I forgot to take pictures. The boys got super cute spring outfits! And they gave us some baking mixes...brownies, Rob's favorite!
We are so blessed with such amazing family. We have such a deep love for every single one of them. Thanks for making Valentines great for us! We Love You!
Valentines Party
{02.14.12}
On Valentines my friends and I had a little party for our kids. It was Atticus' first time out with friends since he started radiation treatments. We were thrilled to spend some time with him! And us moms were thrilled to be together. We have been good friends for so long and have spent so many holidays together.
My pictures are not great of this day. You can tell the kids were very busy decorating their cookies! I love all of these kids so much!!
Group photo, from left: Slade, Mannix, Luke, Laney, Aubrie, Noah (and Jocelyn), Atticus
I had only a couple things to bring to the party. One was a banner. When I got home I found a letter "N" on the counter! Funny thing is, I didn't even notice it was missing when I put it up and took this picture! I'm truly loosing my mind!
It was a wonderful party! It seemed right to spend Valentines together since we all love each other so much!!
Friends' Posts about the party:
Cindy
Jocelyn
On Valentines my friends and I had a little party for our kids. It was Atticus' first time out with friends since he started radiation treatments. We were thrilled to spend some time with him! And us moms were thrilled to be together. We have been good friends for so long and have spent so many holidays together.
My pictures are not great of this day. You can tell the kids were very busy decorating their cookies! I love all of these kids so much!!
Friends' Posts about the party:
Cindy
Jocelyn
Friday, March 9, 2012
Mischievous Slade
{02.20.2012}
With kids you know when there is silence there is mischief going on. That's what happened this morning. As I was getting breakfast ready Slade was missing to pick out what cereal he wanted. He was into mischief. He climbed onto the bathroom counter and was playing with the toothpaste and toothbrushes. Not too bad of mischief I guess but he thought he was so funny.
Slade has been a pretty easy kid, but turning two has brought out a whole new side of him. He has been very emotional and demanding. Especially demanding of my attention. Anytime I try to cook dinner he is at my legs crying because dinner is getting more attention than him. Silly kid. (I will add that to my excuses of why I hate cooking dinner.)
I love my little Slade so much! Mischief and all!
With kids you know when there is silence there is mischief going on. That's what happened this morning. As I was getting breakfast ready Slade was missing to pick out what cereal he wanted. He was into mischief. He climbed onto the bathroom counter and was playing with the toothpaste and toothbrushes. Not too bad of mischief I guess but he thought he was so funny.
Slade has been a pretty easy kid, but turning two has brought out a whole new side of him. He has been very emotional and demanding. Especially demanding of my attention. Anytime I try to cook dinner he is at my legs crying because dinner is getting more attention than him. Silly kid. (I will add that to my excuses of why I hate cooking dinner.)
I love my little Slade so much! Mischief and all!
Thursday, March 8, 2012
Rob's Beautiful Brain
I just got some CDs of Rob's brain scans when his AVM ruptured. It's so crazy to look at them. I remember seeing them for the first time. I was grateful that I had worked in the dental field and was comfortable looking at x-rays and had some general knowledge of how to read them. That's good and bad I guess because I could see how serious of situation this was.
These are the ones taken at the ER. These were the first images I saw of Rob's bleed. You can see the lighter areas towards the back and middle, that's the blood and what would become the blood clot. The blood right in the middle is the ventricle, an open space in the brain but it's filled with blood.
These next ones are also from the ER hospital. These are looking down on the head. The white is the blood. There was a lot of blood.
These next ones were taken after Rob was transferred to another hospital. These are taken with dye inserted into the artery. The copies I have of these images are really cool, they are almost 3D in that I can rotate the head and see it from every different angle. What was medicine like before this kind of imaging?
This first one is looking from the back of the head. One thing Rob had in his favor was the location of the AVM. It was very close to the surface. Meaning less damage to get to it while in surgery. The fact that it bled downwards wasn't in Rob's favor and that's what caused a lot of the damage.
Looking from the left side.
These are the ones taken at the ER. These were the first images I saw of Rob's bleed. You can see the lighter areas towards the back and middle, that's the blood and what would become the blood clot. The blood right in the middle is the ventricle, an open space in the brain but it's filled with blood.
This first one is looking from the back of the head. One thing Rob had in his favor was the location of the AVM. It was very close to the surface. Meaning less damage to get to it while in surgery. The fact that it bled downwards wasn't in Rob's favor and that's what caused a lot of the damage.
Here is some interesting information about AVMs:
Arteriouvenous malformations (AVMs) are the most dangerous congenital vascular malformations. Brain AVMs occur in about 0.1 percent of the population. Supratentorial lesions account for 90 percent of brain AVMs; the remainder are in the posterior fossa. Brain AVMs account for 1 to 2 percent of all strokes, 3 percent of strokes in young adults, and 9 percent of subarachnoid hemorrhages.
AVMs are an abnormal connection between the arteries and veins in the human brain. Arteriouvenous malformations are most commonly of prenatal origin. AVMs are congenital lesions composed of a complex tangle of arteris and veins connected by one or more fistulae. The vascular conglomerate is called the nidus. The nidus has no capillary bed, and the feeding arteries drain directly to the draining veins. The arteries have a deficient muscularis layer. The draining veins often are dilated owing to the high velocity of blood flow through the fistulae.
AVMs are characterized by a failure of the embryonic vascular plexus to fully differentiate and develop a mature capillary bed in the affected area. The formation of AVMs probably relates to sequential formation and resorption of cerebral surface veins. Their structures may change and grow postnatally but only in relation to a prenatally extant lesion.
Brain AVMs usually present between the ages of 10 and 40. The clinical presentation typically falls into one of four categories; intracranial hemorrhage (41 to 79 percent); seizure (11 to 33 percent); headache; and focal neurologic deficit.
I find that all very fascinating. I find the human body fascinating. I remember when I was pregnant being in awe of what my body was capable of. Of making a baby and then after I had the baby my body kicks in to feed that baby. Just mind blowing! I have the same awe for the brain's ability to recover. Rob is still in the beginning stages but from what I've seen and heard from others it's only going to get better year after year. I am grateful for the body's ability to heal. I am grateful for doctors that know how to help people. I am so grateful for Rob.
Wednesday, March 7, 2012
Angry Birds and the Dallas Zoo
{02.23.2012}
I love my mom! She is just the best! I love it when she gets to come visit. It's not very often so I truly treasure it.
The kids love when she visits too. Especially when she brings fun toys like an Angry Bird and Pig for each of them. They were beyond thrilled!
We went to the Dallas Zoo one morning. It was SO much fun! I hadn't been to the new Savannah area yet and it was amazing! I love trying to get a good group shot with kids, it's so funny. Mannix really liked the map and carried it around almost the whole time. He was our tour guide.
We all LOVE animals! Slade was amazed with them, he hasn't been to a zoo before.
This jeep was the highlight for Mannix. It's what he told Rob about when we got home.
We could get so close to the giraffes! Literally almost touch them! You could buy food to feed them but we didn't. My mom and I thought it was interesting how giraffes spread their legs to get low to eat.
I don't think I've ever seen a lion in real life. They are HUGE! The zoo also does a show where they bring them closer and have the lions do their commands. It's a way for the trainers to check their paws, bellies, teeth, etc. It was REALLY cool!
We did the little train ride.
The weather was a little chilly which reminded me of when we went to the zoo with the Swapps after we first moved here. It was so hot! I thought we were all going to die! I will take a little chilly over heat any day!
PS-I just added a new tab at the top of our blog sharing some of Our Story. I love to look back at those pictures, we were babies when we met and got married! And our real babies are so cute as babies! I hope that helps some of you get to know us better.
I love my mom! She is just the best! I love it when she gets to come visit. It's not very often so I truly treasure it.
The kids love when she visits too. Especially when she brings fun toys like an Angry Bird and Pig for each of them. They were beyond thrilled!
PS-I just added a new tab at the top of our blog sharing some of Our Story. I love to look back at those pictures, we were babies when we met and got married! And our real babies are so cute as babies! I hope that helps some of you get to know us better.
Tuesday, March 6, 2012
March 6th
What happened to February? It went by so quickly but Valentines seems like a year ago. I don't know how that works. Anyways...
It was an eventful month. We were busy! I think it's taken me a few weeks to write an update post because it's been a very emotional month too. There were a few gloomy weeks. Weeks when this all seemed too much to handle. That I wanted to run away and leave this behind. Where I longed and wished for our old planned life. Where the paperwork felt endless. Where it seemed like everything was against us. Where things felt like it would never get better. There was no light at the end of the tunnel. But my outlook has gotten a little better. The past week has felt very optimistic and hopeful for our future, Rob has felt the same way too. One thing I know for sure is that sorting the emotions of such a traumatic event and change of life is not going to be easy or quick. I think of it as a roller coaster, that eventually the loops and dips will be further apart and less deep but right now it's up and down. Eventually it will be easier. I've managed to cope and function by working, by keeping the paperwork in order, phone calls made, and keeping busy. As long as I do that I'm okay. If I think about the deep loss we've had or think about Rob's injury I can lose it instantly, but as long as I don't think about it, I'm okay. I know that may not be healthy, but it's the only way I know how to keep going. And I have to keep going, I don't have a choice. I have felt pretty good for the past week and I hope it keeps up. Plus the weather has been wonderful so I think that's lifted all of our spirits!
Rob is doing so well. He is making great progress. Even he said yesterday that day to day, even week to week he can't see it but month to month he can see the difference. That is one thing I like about Family Conference. They are a month apart so it's enough time for some progress. That's help us leave hopeful knowing that he's doing better today than a month ago.
Here are some notes from Family Conference yesterday...
Physical Therapy- Working on balance, stamina, and coordination. They are changing Rob's workout schedule so that two days a week he has independent work out time that he will do weights and some cardio. This is a good step because it shows that cognitively he's doing well enough to not need a therapist there all the time. They started doing to right leg work to simulate moving his foot on and off the gas and brake while driving. So they put a ankle weight on his foot and had him do that up down motion. Rob has progressed in side stepping on the balance beam and now loses his balance only a couple times. He has been working on jumping and endurance while jumping. Rob fell once this week while doing a jumping activity because his right leg lags behind sometimes and it just caught under him. But the therapist said that "the brain learns from making mistakes". Rob is able to do repetitive stairs and not needing to look down as much. Rob ran 20 min on the treadmill and 15 min outside. He also walked on the treadmill blindfolded to help him gain better awareness of where he is and help coordination. Rob likes PT because it's measurable, he can see how much longer he's running now from a month ago. He works so hard! Rob is really getting fit! We had to buy new pants over the weekend because his others are all too big.
Occupational Therapy - The therapist wasn't there but sent some notes. Rob is working on high level fine motor skills. One great thing is that Rob still initiates with his right hand. I guess sometimes in a brain injury the non-dominate hand starts to take over as the dominate hand. But for Rob his brain still thinks of his right has as the dominate hand. That's really good. Rob's grip strength went from 88lbs to 96lbs on the right and 96lb to 107lb on the left. Really great improvement. One thing I find encouraging about that is that his right hand isn't too far behind his left hand. In the peg test his right hand went from 28 seconds to 25 seconds, which was his goal! Right left hand went from 20 seconds to 19 seconds, which is normal performance. Rob's been doing legos and paint by number to work fine motor skills.
Speech Therapy - Rob's weekly schedule is given to him verbally then he fills in the blanks on his printed schedule. She said Rob is writing a little faster and using abbreviations. Rob's quick short term memory is still struggling, information just isn't sticking. They are working on that, hopefully some of that skill comes back. Rob is on the highest level on a computer/data program and will continue that. Rob's right and left differentiation has gotten better. Just last week he said it just kind of clicked and felt a lot better. I love to hear great news like that!
Rob went to a couple classes at school and will continue to do that. A therapist goes with him. Later that day she asks Rob questions about the information discussed in class. Rob is able to put what they talked about in layman’s terms and only has a few word finding problems during the explanations. So great!
One overall theme from all the therapists is that Rob is progressing so well that he is challenging the therapists to find ways to challenge Rob. I think that's fantastic!
A couple weeks ago Rob and I met with the neuropsychologist to go over Rob's Neurocognative Test Results. This test was 8+ hours long and tested all areas of Rob's cognitive function. It is clear the areas Rob's stroke has affected. Here is a graph of the test results. I'll also define and discuss each area some.
*Verbal/Language*
(ability to understand/express words/sentences)
-Vocab (defining words)- average
-Abstract (understand abstract connection between words) - high average ; this also includes metaphors and sarcasm. Some brain injuries result in very linear thinking, Rob is able to understand jokes, what a blessing!
-Naming (name objects) - average
-Category Fluency (being able to list objects in a category, ie-list as many animals as you can)- impaired; this has improved but is around
-Comprehension - high average
-DS FW (I don't remember what this is and didn't write a note) - average range
*Verbal Memory*
(ability to recall information given only verbally)
-List immediate recall (given a list of items and asked to recall) - impaired
-List delayed recall - impaired
-Stories immediate recall - impaired
-Stories delayed recall - impaired
-Daily living immediate recall - average
-Daily living delayed recall - impaired
This is one of the more affected categories. But memory is something Rob can easily compensate for. He will have to be diligent in writing himself notes and reminders. Rob has the initiative to make reminders. A lot of brain injuries result in memory damage but they don't have the awareness to know they need to write things down. Rob does, which is wonderful. One of the biggest helps with this is his iPhone. He is able to keep everything on there and make reminders and set alarms to remember to do something. I see memory problems with small things like asking Rob to get something from another room, he'll have to come ask what he was going to get. This is something that can improve but he will always need to compensate.
*Non-Verbal Memory*
(looking at shapes/drawing shapes; typically a right brain function)
-Shapes immediate recall - average
-Shapes delayed recall - average
-Shapes2 immediate recall - average
-Shapes2 delayed recall - average
*Visuospatial*
(right brain function)
-Block Design - high average
-Matrix Reasoning (completing patterns) - Superior! 98%
-Line Orientation (identifying line angle) - average
*Frontal Brain*
-Digit span backward (repeating numbers in reverse order) - low average
-Letter Fluency (given a letter and asked for as many words as possible starting with that letter) - impaired
-Trails A (connect the numbered dots) - impaired
-Trails B (connect number and letter dots alternating, ie- 1, A, 2, B, 3, C) - impaired
-Problem Solving - low average
-DV time (scan a page of letters, cross out all of a specific letter) - impaired; this is a timed test, part of the difficulty is his motor function in his hand to actually make the cross mark
-DV errors (how many errors in DV time) - average; Rob is very accurate
*Academic*
-Read - average
-Spell - average
-Math - low average; this has been very difficult for Rob to struggle at. Before his stroke he was a walking calculator and could do large math in his head. I think it's really sad for Rob to not have that gift anymore.
(Note that this test stores are compared against same age, same gender, same education levels as Rob.)
I find this test very encouraging. Yes, Rob had deficits, BUT they aren't in areas that are going to inhibit him from living a full life. And even from returning to work. This test is a snapshot in time, only six months after his stroke. Rob has a lot of healing and recovery left to make. Also some areas that are impaired do not translate into real life much, like how often do you have to list all the fruits you can, except in a board game or something.
I left this meeting feeling very hopeful for Rob’s future. This test also affirms to me how much worse Rob’s injuries could be. He has been so blessed! Just immeasurably blessed! I’m most grateful that he’s still Rob, he still has his wonderful personality.
Rob continues to inspire me with his patience and good attitude. I don't know how he does it. I love him so much. I have never met anyone like him, he's truly a unique individual. I'm so grateful he's mine!!
I'll do seperate posts about all the parties and fun things we did in February. But not tonight. This took forever to write! Goodnight!
It was an eventful month. We were busy! I think it's taken me a few weeks to write an update post because it's been a very emotional month too. There were a few gloomy weeks. Weeks when this all seemed too much to handle. That I wanted to run away and leave this behind. Where I longed and wished for our old planned life. Where the paperwork felt endless. Where it seemed like everything was against us. Where things felt like it would never get better. There was no light at the end of the tunnel. But my outlook has gotten a little better. The past week has felt very optimistic and hopeful for our future, Rob has felt the same way too. One thing I know for sure is that sorting the emotions of such a traumatic event and change of life is not going to be easy or quick. I think of it as a roller coaster, that eventually the loops and dips will be further apart and less deep but right now it's up and down. Eventually it will be easier. I've managed to cope and function by working, by keeping the paperwork in order, phone calls made, and keeping busy. As long as I do that I'm okay. If I think about the deep loss we've had or think about Rob's injury I can lose it instantly, but as long as I don't think about it, I'm okay. I know that may not be healthy, but it's the only way I know how to keep going. And I have to keep going, I don't have a choice. I have felt pretty good for the past week and I hope it keeps up. Plus the weather has been wonderful so I think that's lifted all of our spirits!
Rob is doing so well. He is making great progress. Even he said yesterday that day to day, even week to week he can't see it but month to month he can see the difference. That is one thing I like about Family Conference. They are a month apart so it's enough time for some progress. That's help us leave hopeful knowing that he's doing better today than a month ago.
Here are some notes from Family Conference yesterday...
Physical Therapy- Working on balance, stamina, and coordination. They are changing Rob's workout schedule so that two days a week he has independent work out time that he will do weights and some cardio. This is a good step because it shows that cognitively he's doing well enough to not need a therapist there all the time. They started doing to right leg work to simulate moving his foot on and off the gas and brake while driving. So they put a ankle weight on his foot and had him do that up down motion. Rob has progressed in side stepping on the balance beam and now loses his balance only a couple times. He has been working on jumping and endurance while jumping. Rob fell once this week while doing a jumping activity because his right leg lags behind sometimes and it just caught under him. But the therapist said that "the brain learns from making mistakes". Rob is able to do repetitive stairs and not needing to look down as much. Rob ran 20 min on the treadmill and 15 min outside. He also walked on the treadmill blindfolded to help him gain better awareness of where he is and help coordination. Rob likes PT because it's measurable, he can see how much longer he's running now from a month ago. He works so hard! Rob is really getting fit! We had to buy new pants over the weekend because his others are all too big.
Occupational Therapy - The therapist wasn't there but sent some notes. Rob is working on high level fine motor skills. One great thing is that Rob still initiates with his right hand. I guess sometimes in a brain injury the non-dominate hand starts to take over as the dominate hand. But for Rob his brain still thinks of his right has as the dominate hand. That's really good. Rob's grip strength went from 88lbs to 96lbs on the right and 96lb to 107lb on the left. Really great improvement. One thing I find encouraging about that is that his right hand isn't too far behind his left hand. In the peg test his right hand went from 28 seconds to 25 seconds, which was his goal! Right left hand went from 20 seconds to 19 seconds, which is normal performance. Rob's been doing legos and paint by number to work fine motor skills.
Speech Therapy - Rob's weekly schedule is given to him verbally then he fills in the blanks on his printed schedule. She said Rob is writing a little faster and using abbreviations. Rob's quick short term memory is still struggling, information just isn't sticking. They are working on that, hopefully some of that skill comes back. Rob is on the highest level on a computer/data program and will continue that. Rob's right and left differentiation has gotten better. Just last week he said it just kind of clicked and felt a lot better. I love to hear great news like that!
Rob went to a couple classes at school and will continue to do that. A therapist goes with him. Later that day she asks Rob questions about the information discussed in class. Rob is able to put what they talked about in layman’s terms and only has a few word finding problems during the explanations. So great!
One overall theme from all the therapists is that Rob is progressing so well that he is challenging the therapists to find ways to challenge Rob. I think that's fantastic!
A couple weeks ago Rob and I met with the neuropsychologist to go over Rob's Neurocognative Test Results. This test was 8+ hours long and tested all areas of Rob's cognitive function. It is clear the areas Rob's stroke has affected. Here is a graph of the test results. I'll also define and discuss each area some.
(ability to understand/express words/sentences)
-Vocab (defining words)- average
-Abstract (understand abstract connection between words) - high average ; this also includes metaphors and sarcasm. Some brain injuries result in very linear thinking, Rob is able to understand jokes, what a blessing!
-Naming (name objects) - average
-Category Fluency (being able to list objects in a category, ie-list as many animals as you can)- impaired; this has improved but is around
-Comprehension - high average
-DS FW (I don't remember what this is and didn't write a note) - average range
*Verbal Memory*
(ability to recall information given only verbally)
-List immediate recall (given a list of items and asked to recall) - impaired
-List delayed recall - impaired
-Stories immediate recall - impaired
-Stories delayed recall - impaired
-Daily living immediate recall - average
-Daily living delayed recall - impaired
This is one of the more affected categories. But memory is something Rob can easily compensate for. He will have to be diligent in writing himself notes and reminders. Rob has the initiative to make reminders. A lot of brain injuries result in memory damage but they don't have the awareness to know they need to write things down. Rob does, which is wonderful. One of the biggest helps with this is his iPhone. He is able to keep everything on there and make reminders and set alarms to remember to do something. I see memory problems with small things like asking Rob to get something from another room, he'll have to come ask what he was going to get. This is something that can improve but he will always need to compensate.
*Non-Verbal Memory*
(looking at shapes/drawing shapes; typically a right brain function)
-Shapes immediate recall - average
-Shapes delayed recall - average
-Shapes2 immediate recall - average
-Shapes2 delayed recall - average
*Visuospatial*
(right brain function)
-Block Design - high average
-Matrix Reasoning (completing patterns) - Superior! 98%
-Line Orientation (identifying line angle) - average
*Frontal Brain*
-Digit span backward (repeating numbers in reverse order) - low average
-Letter Fluency (given a letter and asked for as many words as possible starting with that letter) - impaired
-Trails A (connect the numbered dots) - impaired
-Trails B (connect number and letter dots alternating, ie- 1, A, 2, B, 3, C) - impaired
-Problem Solving - low average
-DV time (scan a page of letters, cross out all of a specific letter) - impaired; this is a timed test, part of the difficulty is his motor function in his hand to actually make the cross mark
-DV errors (how many errors in DV time) - average; Rob is very accurate
*Academic*
-Read - average
-Spell - average
-Math - low average; this has been very difficult for Rob to struggle at. Before his stroke he was a walking calculator and could do large math in his head. I think it's really sad for Rob to not have that gift anymore.
(Note that this test stores are compared against same age, same gender, same education levels as Rob.)
I find this test very encouraging. Yes, Rob had deficits, BUT they aren't in areas that are going to inhibit him from living a full life. And even from returning to work. This test is a snapshot in time, only six months after his stroke. Rob has a lot of healing and recovery left to make. Also some areas that are impaired do not translate into real life much, like how often do you have to list all the fruits you can, except in a board game or something.
I left this meeting feeling very hopeful for Rob’s future. This test also affirms to me how much worse Rob’s injuries could be. He has been so blessed! Just immeasurably blessed! I’m most grateful that he’s still Rob, he still has his wonderful personality.
Rob continues to inspire me with his patience and good attitude. I don't know how he does it. I love him so much. I have never met anyone like him, he's truly a unique individual. I'm so grateful he's mine!!
I'll do seperate posts about all the parties and fun things we did in February. But not tonight. This took forever to write! Goodnight!
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