Life has been slow since the shunt surgery. Erik had muscle spasms and was flat on his back for several days...he seems to be doing much better since yesterday. This is good, because all the therapies have been put on hold until he feels better. Next week is busy with appointments and so I hope he is back to 'work' mode by then.
It looks like his CSF leak has stopped since the surgery. There has also been an unexpected bonus since the shunt was put in. Erik's double vision seems to have been repaired. I guess that the CSF pressure was not only causing the leak, but the double vision too. Erik has an eye appointment next week & we will learn more about his vision at that time. This is great news...he might have dodged another surgery. Keep your fingers crossed.
Thursday, May 22, 2008
Sunday, May 18, 2008
Caregiver Calendar Updated 5/18
Thank you so much for helping care for Erik while he is down! We really appreciate it: for Erik it's a nice change of pace to hang out with his friends and for me - it's nice to get a break and go back to work.
Following is the current calendar. Someone has volunteered for every shift in May. Thanks guys!
Following is the current calendar. Someone has volunteered for every shift in May. Thanks guys!
Click on Calendar above to view Large
Click on Calendar above to view LargeFriday, May 16, 2008
TODAY'S Shunt Surgery
Today Erik had his shunt put in. I am so glad that today is over.
He has a incision in his abdomen under his belly button and another in his back on his spine (around the same height). The neurosurgeon team put a small tube (not a vein) in his dura, which surrounds his spine and holds in CSF (the same 'dura' that surrounds is brain). They wove the tube (shunt) under his skin on the right side of his body and attached it to a cavity in his abdomen. This tube drains CSF from his dura at his spine to his abdomen which will naturally absorb into his body. The purpose of this is to relieve the pressure in Erik's brain. With less pressure, it will give the tear in his dura at his brain time to heal. The shunt works on a gravity type system. When he stands up it drains, when laying it does not. He will have headaches because of the shunt, this means that it is working. They should not be migraine headaches, but a slight headache instead. Erik now knows what it feels like to have your stomach cut into - it hurts: and I along with a lot of other ladies can vouch for that. I keep trying to remind him that his muscles will grow back together - it just takes time.
Erik's surgery was short, only 1/2 hour and I saw him 2 hours after it was over. The Doc's said that everything went great. He was funny in the recovery room coming off of the anesthesia. He was talking and cracking jokes, even to other patients in the recovery room. We went into the hospital at 6am and got released at 5pm, so it was a long day. The drive home was NOT fun, but it is now over and Erik is sleeping on the couch heavily medicated.
I am winding down and trying to stay cool. Whew. As far as we can tell, Erik wont be having surgery anytime soon, the next time maybe 5 months down the road for his Eye. The neurosurgeon thinks that Erik may be able to get his eye fixed by an optical surgeon instead of himself. This would be much less invasive and his head would not need to be opened up again. He said that it has something to do with lengthing and shortening the muscles that attach the eye. This sounds much better then the alternative, taking his brain out and fixing the optic roof. Once again I am getting ahead of myself...one day at a time.
He has a incision in his abdomen under his belly button and another in his back on his spine (around the same height). The neurosurgeon team put a small tube (not a vein) in his dura, which surrounds his spine and holds in CSF (the same 'dura' that surrounds is brain). They wove the tube (shunt) under his skin on the right side of his body and attached it to a cavity in his abdomen. This tube drains CSF from his dura at his spine to his abdomen which will naturally absorb into his body. The purpose of this is to relieve the pressure in Erik's brain. With less pressure, it will give the tear in his dura at his brain time to heal. The shunt works on a gravity type system. When he stands up it drains, when laying it does not. He will have headaches because of the shunt, this means that it is working. They should not be migraine headaches, but a slight headache instead. Erik now knows what it feels like to have your stomach cut into - it hurts: and I along with a lot of other ladies can vouch for that. I keep trying to remind him that his muscles will grow back together - it just takes time.
Erik's surgery was short, only 1/2 hour and I saw him 2 hours after it was over. The Doc's said that everything went great. He was funny in the recovery room coming off of the anesthesia. He was talking and cracking jokes, even to other patients in the recovery room. We went into the hospital at 6am and got released at 5pm, so it was a long day. The drive home was NOT fun, but it is now over and Erik is sleeping on the couch heavily medicated.
I am winding down and trying to stay cool. Whew. As far as we can tell, Erik wont be having surgery anytime soon, the next time maybe 5 months down the road for his Eye. The neurosurgeon thinks that Erik may be able to get his eye fixed by an optical surgeon instead of himself. This would be much less invasive and his head would not need to be opened up again. He said that it has something to do with lengthing and shortening the muscles that attach the eye. This sounds much better then the alternative, taking his brain out and fixing the optic roof. Once again I am getting ahead of myself...one day at a time.
Tuesday, May 13, 2008
Plastic's Appointment
We went to see Dr. Meuller today, Erik's plastic surgeon. He provided us the photo's of the CT scan that was taken last Thursday on 5/8. These images are crazy. He highlighted in yellow each titanium plate that was added to Eriks face. You can see the screws at the end of each plate...they look a little nobby.
As you can see in the following picture. There is a bunch of yellow in the optical floor of his left eye (shown on the right side). That yellow is the titanium mesh that was used to lift up his left eye. There was a hole in this area prior to the plastic surgery.
This image shows a hole in the side area of Erik's head, above the temple. That is a drill hole that the surgeons used to cut Erik's skull open. The cut is shown at the line of the square plate. Dr. Meuller said that the hole will heal itself.
This is the most shocking image. This is the left side of Erik's head. YES there is a giant hole in Erik's skull. We had no clue. I can't get over it. When you look at Erik ... you can actually see a concave indention in Eriks head. I guess that Erik did not realize the indention until I mentioned it to him about 5 minutes before Dr. Meuller walked into the room. This hole seems very strange to me. I am not sure why there is no solid material in this area. The plastic surgeon said that later he can 'pop it back out' with a titanium mesh...I am unsure why it was not done to begin with. It seems a little dangerous to me. We don't have another appointment with Doctor Mueller for another 3 months, so I guess that if Erik wants to 'pop it out' then the surgeon wants to wait to do it.
The next picture shows the big issue with Erik's face. Notice that when you look into the right eye socket, there is nothing there (see the difference between the left socket) This is an issue. There is a hole in Erik's optic roof.
I have re-created a couple diagrams the doctor showed us in order to make it a little easier to understand. This is a normal eye socket in profile view. There is fat behind the eye with an optic roof and floor containing it. Erik's left eye had a hole in the optic floor, which was repaired by that titanium mesh that I mentioned before the first image.
This is a diagram of Erik's Right Eye. There is a hole in the optic roof. The fat is pushing up, therefore not creating the pressure that is needed for the eye to be in its correct location. The eye is pushing back and up. If you look directly into Erik's eyes...you can actually see less of the colored part of Eriks eye. His there is about 5mm of white that continues under his colored area of his eye. His whole eye area is actually set back a bit.
The plastic surgeon said that this type of repair is done by the neurosurgeon. This DOES mean another surgery. We have an appointment with the neurosurgeon tomorrow regarding the CSF leak...We will also try to find out more about the optic roof. I am not sure if this is something that they will be able to repair at the same time.
As you can see in the following picture. There is a bunch of yellow in the optical floor of his left eye (shown on the right side). That yellow is the titanium mesh that was used to lift up his left eye. There was a hole in this area prior to the plastic surgery.
This image shows a hole in the side area of Erik's head, above the temple. That is a drill hole that the surgeons used to cut Erik's skull open. The cut is shown at the line of the square plate. Dr. Meuller said that the hole will heal itself.
This is the most shocking image. This is the left side of Erik's head. YES there is a giant hole in Erik's skull. We had no clue. I can't get over it. When you look at Erik ... you can actually see a concave indention in Eriks head. I guess that Erik did not realize the indention until I mentioned it to him about 5 minutes before Dr. Meuller walked into the room. This hole seems very strange to me. I am not sure why there is no solid material in this area. The plastic surgeon said that later he can 'pop it back out' with a titanium mesh...I am unsure why it was not done to begin with. It seems a little dangerous to me. We don't have another appointment with Doctor Mueller for another 3 months, so I guess that if Erik wants to 'pop it out' then the surgeon wants to wait to do it.
The next picture shows the big issue with Erik's face. Notice that when you look into the right eye socket, there is nothing there (see the difference between the left socket) This is an issue. There is a hole in Erik's optic roof.
I have re-created a couple diagrams the doctor showed us in order to make it a little easier to understand. This is a normal eye socket in profile view. There is fat behind the eye with an optic roof and floor containing it. Erik's left eye had a hole in the optic floor, which was repaired by that titanium mesh that I mentioned before the first image.
This is a diagram of Erik's Right Eye. There is a hole in the optic roof. The fat is pushing up, therefore not creating the pressure that is needed for the eye to be in its correct location. The eye is pushing back and up. If you look directly into Erik's eyes...you can actually see less of the colored part of Eriks eye. His there is about 5mm of white that continues under his colored area of his eye. His whole eye area is actually set back a bit.
The plastic surgeon said that this type of repair is done by the neurosurgeon. This DOES mean another surgery. We have an appointment with the neurosurgeon tomorrow regarding the CSF leak...We will also try to find out more about the optic roof. I am not sure if this is something that they will be able to repair at the same time.
Friday, May 9, 2008
CSF leak
Erik does have a CSF leak (cerebral spinal fluid - see previous blog entry for more info). We have an appointment next Wednesday AM with the neurologist to see what his next step is. It looks like he will have to have a shunt put in. The resident neurologist said that this is a 'minor' surgery in the neurosurgery field. If you are an internet researcher - you will find out that shunts fail frequently. This is not an issue for Erik because it will only be used until Eriks Dura heals itself. I will post more info. on the next surgery after our Wednesday appointment. Hopefully we will know more at that time.
Thursday, May 8, 2008
Cisternogram
Erik had a Cisternogram today to find out if he is having CSF (cerebral Spinal Fluid) leaking out of his nose. To explain it easier. You've got a brain, and around the brain is the "dura" which is a layer of tissue that holds in the cerebral spinal fluid...CSF is the same stuff that travels all the way down your spine. The CSF acts as a cushion for the brain. He may have a tear in his dura, which means that he has CSF leaking out of his nose and his eyes.
Today we showed up at OHSU at 7am (way too early for comfort). About 8ish they shoved flat packing that had strings hanging off it; up his nostrils. They are kind of like a very flat tampon. They put two up each nostril with these VERY huge tweezers. Pretty uncomfortable for Erik, he thought the guy was going to poke him in the brain.
Then we got ushered off to radiology. I stood there and held Eriks hand while the Radiologist gave erik a spinal tap. He numbed the spot first with a needle that was a couple inches long. While watching x-rays of Eriks spine, he put a very long needle between his vertebrae. He injected a dye and then a radioactive fluid. The numbing shot hurt a little, the spinal tap shot was only pressure, but the dye hurt very bad. Erik's hips were killing him - but it only lasted a few minutes. This kind of pain is very common...but Erik still hated it.
Erik then got a CT (the big long tube that takes x-rays of his body). Then we went to another building (thru a skybridge) and they took a 'picture' of the radioactive fluid in his brain/spine. They took the packing out of his nose and are testing it for radioactive fluid (this is the best test).
We then went back to Eriks 'room' and waited. The doctor ordered a second CT Scan (which we have no clue why) so we had to go back to do that. So we left the hospital about 4:15.
So, as of now we don't know anything. The lab has to 'spin' the nose packing in order to find out if CSF is in it. The neurologist will review the results from the CT scans and the pictures of the radioactive fluid. We will call in the morning to see if they have the results. Who knows when we will actually find anything out. So..it was a long day and we are both glad its over.
I just want to warn you guys...Erik probably does have CSF leaking out of his nose (and possibly eyes). I will be pretty shocked if the test comes out negative...actually if it is negative, I will think that the test is wrong. The radiologist said that these tests can be/and are frequently inaccurate. Erik had CSF leaking out of his nose in the ICU but it stopped after a few days. We did some research and Erik has 10 out of 12 of the symptoms of CSF leakage (yes, they are most of the same symptoms as brain injury). But finally, Erik is NOT sick...he does not have a cold...and his nose & eyes are leaking a lot during the day...they leak more when he sits up quickly or moves his head around a lot. We will know more tomorrow and I hope that the doc's prove us wrong. If its spinal fluid, then it's likely that Erik will have another surgery to correct the problem - We'll cross that path when we come to it.
Wish us luck and we'll keep you posted. ~Melissa
Today we showed up at OHSU at 7am (way too early for comfort). About 8ish they shoved flat packing that had strings hanging off it; up his nostrils. They are kind of like a very flat tampon. They put two up each nostril with these VERY huge tweezers. Pretty uncomfortable for Erik, he thought the guy was going to poke him in the brain.
Then we got ushered off to radiology. I stood there and held Eriks hand while the Radiologist gave erik a spinal tap. He numbed the spot first with a needle that was a couple inches long. While watching x-rays of Eriks spine, he put a very long needle between his vertebrae. He injected a dye and then a radioactive fluid. The numbing shot hurt a little, the spinal tap shot was only pressure, but the dye hurt very bad. Erik's hips were killing him - but it only lasted a few minutes. This kind of pain is very common...but Erik still hated it.
Erik then got a CT (the big long tube that takes x-rays of his body). Then we went to another building (thru a skybridge) and they took a 'picture' of the radioactive fluid in his brain/spine. They took the packing out of his nose and are testing it for radioactive fluid (this is the best test).
We then went back to Eriks 'room' and waited. The doctor ordered a second CT Scan (which we have no clue why) so we had to go back to do that. So we left the hospital about 4:15.
So, as of now we don't know anything. The lab has to 'spin' the nose packing in order to find out if CSF is in it. The neurologist will review the results from the CT scans and the pictures of the radioactive fluid. We will call in the morning to see if they have the results. Who knows when we will actually find anything out. So..it was a long day and we are both glad its over.
I just want to warn you guys...Erik probably does have CSF leaking out of his nose (and possibly eyes). I will be pretty shocked if the test comes out negative...actually if it is negative, I will think that the test is wrong. The radiologist said that these tests can be/and are frequently inaccurate. Erik had CSF leaking out of his nose in the ICU but it stopped after a few days. We did some research and Erik has 10 out of 12 of the symptoms of CSF leakage (yes, they are most of the same symptoms as brain injury). But finally, Erik is NOT sick...he does not have a cold...and his nose & eyes are leaking a lot during the day...they leak more when he sits up quickly or moves his head around a lot. We will know more tomorrow and I hope that the doc's prove us wrong. If its spinal fluid, then it's likely that Erik will have another surgery to correct the problem - We'll cross that path when we come to it.
Wish us luck and we'll keep you posted. ~Melissa
Sunday, May 4, 2008
Saturday, May 3, 2008
First Few days @ Home
We are trying to adjust to our new life at home. I don't think I have ever been so busy in my entire life. I feel like I am running and running all of the time. According to the doctors, it is best that Erik has a very scheduled life. This seems to be very unlike Erik's personality, but just like mine. Everything he does takes an unbelievable amount of energy and then he gets to take a nap. Then I wake him up, give him drugs and do it all over again.
We had our first home visit with a physical therapist. Erik did a bunch of balance tests to find out the reason for his instability. The good news is, she thinks it is just strength issues, not an inner ear issue. This means a lot of hard work for Erik. He has homework to do squats and toe lifts 3x a day. Today we are going to get Erik a massage. I spoke with our Massage Therapist, Michelle Sheilds, and she will do the whole massage with Erik either lying on his back or his side. Hopefully she will be able to help with his back and neck pain.
As for Eriks pain, we seem to be managing it pretty well. He pretty much takes Tylenol throughout the day and takes 1/2 vicodin at night. He doesn't like taking the Vicodin during the day because it makes him feel loopy. The thing that is really driving him nuts is that hes cold ALL of the time. Our house is warmer than it ever has been and the poor guy is still shaking. In order for Erik to function, he has to wear an eye patch all of the time...otherwise he sees double vision. We have an appointment with a eye doctor that specializes in eye rehab in about a month..I guess he does some sort of eye exercises to get the eyes to re-align. We are doing some of this at home too, hopefully it will work and he wont have to have surgery.
We went to meet with the neurosurgeon on Wednesday. This was the guy that operated on Erik in the ER. He looked straight at Erik and told him...."I really want you to understand this. You are VERY lucky to be alive right now." This was a shock to Erik. He told me that it is one thing for friends and family to be telling him this, but a very different thing to hear it from a Brain Surgeon. We got some scary news at this visit too. Eriks eyes and nose are dripping several times throughout the day. It is a possibility that it is spinal fluid leaking out of his body. Erik is going to have a procedure to have a radioactive fluid shot into his back and a plug like thing in his nose to catch the leak. They are going to test to see if its snot, or spinal fluid. If it is spinal fluid, then he may need to have a shunt put in. The doctor did not tell us what a shunt was but I found a description on Wikipedia: (click here) http://en.wikipedia.org/wiki/Cerebral_shunt
He said that the fluid would be directed to a cavity near (in?) his stomach. I think that the test will happen within the month, but the time was not set up yet. This was the first time that we only had each other to lean on when hearing bad medical news. It was hard. I think that I came to the realization that the serious surgery's might not be done yet. I had talked myself into the idea that the plastic surgery was the last surgery. Well, what can we do. Take the next step and move forward. As we have been told many times - there is a long road ahead of us.
To end with good news, yesterday Erik put his kicks on and walked ALL around the coldasac. It was the farthest he has walked, and he did great. He was very tired when we got back inside and took a nap. So friends, Erik is being strong and working hard.
We had our first home visit with a physical therapist. Erik did a bunch of balance tests to find out the reason for his instability. The good news is, she thinks it is just strength issues, not an inner ear issue. This means a lot of hard work for Erik. He has homework to do squats and toe lifts 3x a day. Today we are going to get Erik a massage. I spoke with our Massage Therapist, Michelle Sheilds, and she will do the whole massage with Erik either lying on his back or his side. Hopefully she will be able to help with his back and neck pain.
As for Eriks pain, we seem to be managing it pretty well. He pretty much takes Tylenol throughout the day and takes 1/2 vicodin at night. He doesn't like taking the Vicodin during the day because it makes him feel loopy. The thing that is really driving him nuts is that hes cold ALL of the time. Our house is warmer than it ever has been and the poor guy is still shaking. In order for Erik to function, he has to wear an eye patch all of the time...otherwise he sees double vision. We have an appointment with a eye doctor that specializes in eye rehab in about a month..I guess he does some sort of eye exercises to get the eyes to re-align. We are doing some of this at home too, hopefully it will work and he wont have to have surgery.
We went to meet with the neurosurgeon on Wednesday. This was the guy that operated on Erik in the ER. He looked straight at Erik and told him...."I really want you to understand this. You are VERY lucky to be alive right now." This was a shock to Erik. He told me that it is one thing for friends and family to be telling him this, but a very different thing to hear it from a Brain Surgeon. We got some scary news at this visit too. Eriks eyes and nose are dripping several times throughout the day. It is a possibility that it is spinal fluid leaking out of his body. Erik is going to have a procedure to have a radioactive fluid shot into his back and a plug like thing in his nose to catch the leak. They are going to test to see if its snot, or spinal fluid. If it is spinal fluid, then he may need to have a shunt put in. The doctor did not tell us what a shunt was but I found a description on Wikipedia: (click here) http://en.wikipedia.org/wiki/Cerebral_shunt
He said that the fluid would be directed to a cavity near (in?) his stomach. I think that the test will happen within the month, but the time was not set up yet. This was the first time that we only had each other to lean on when hearing bad medical news. It was hard. I think that I came to the realization that the serious surgery's might not be done yet. I had talked myself into the idea that the plastic surgery was the last surgery. Well, what can we do. Take the next step and move forward. As we have been told many times - there is a long road ahead of us.
To end with good news, yesterday Erik put his kicks on and walked ALL around the coldasac. It was the farthest he has walked, and he did great. He was very tired when we got back inside and took a nap. So friends, Erik is being strong and working hard.
Friday, May 2, 2008
From Erik to Bob
Previous Comment from Bob Schatz
Yea! get to go home, that is the best. Erik is so ready (mentally) to get out of there. Yea can't drink a beer but hey he can drink and eat and walk. When this first happened I kept thinking of how fragile we all are and how a sudden thing like this can radically change our lives and for the first week I was not upset for sitting in traffic or little things like that because I was happy that I was actually driving and living. Then that feeling starting wearing off and now I have to keep reminding myself of that feeling and have my own little reality check once in a while. Live life, love life, make that next trip around the sun worth life.
________________________
Hey, it's Erik. Wow, Bob, that's a pretty deep comment. You brought a teer, but it is very true. My outlook on life is totally different. Life is fragile and some things that you might think are very important really aren't.
Yea! get to go home, that is the best. Erik is so ready (mentally) to get out of there. Yea can't drink a beer but hey he can drink and eat and walk. When this first happened I kept thinking of how fragile we all are and how a sudden thing like this can radically change our lives and for the first week I was not upset for sitting in traffic or little things like that because I was happy that I was actually driving and living. Then that feeling starting wearing off and now I have to keep reminding myself of that feeling and have my own little reality check once in a while. Live life, love life, make that next trip around the sun worth life.
________________________
Hey, it's Erik. Wow, Bob, that's a pretty deep comment. You brought a teer, but it is very true. My outlook on life is totally different. Life is fragile and some things that you might think are very important really aren't.
Caregiver Calendar - Updated 5/6
MAY
CLICK ON CALENDAR ABOVE TO VIEW LARGE
JUNE
CLICK ON CALENDAR ABOVE TO VIEW LARGE
Thank you for your outstanding response to my previous post. You guys are SO AWESOME! Above is the May & June Calendar for Erik's Care. I am going to start out working Wednesday through Fridays to start and see how that works.
CLICK ON CALENDAR ABOVE TO VIEW LARGEJUNE
CLICK ON CALENDAR ABOVE TO VIEW LARGEThe spaces that say 'Open Shift' still need to be filled. If you would like to fill one week or several, let me know. If you want to do both AM and PM shifts then also let me know.
I can not say thank you enough.
_______________
We also have a food schedule that Jen & Dave Hunt have organized. We have someone either bringing food, or a previously made frozen meal that we will be eating most days of the Month. Thank you for feeding and taking care of us! I have included on these calendars ONLY the days that we have dinner plans (as in visitors) already.
Thursday, May 1, 2008
We need Help...
Erik is home now and we are working on getting our life back together. Today we got a huge blow: I was hoping to start work next week but I just found out that we DO NOT have an insurance benefit to help pay for a caregiver for Erik. We can not afford to pay for someone to come into our house to care for Erik. Now is when we need your help. I need to get back to work.
What I am asking here is a big deal. Erik needs 24 hour care and I need to get back to work. What I need is this; at least a 4 hour block of time during the weekday that you can care for Erik. It makes it even more difficult because will need to be 1 on 1 care which means children can not come. I have daycare for Tanner from around 7am-5pm and I would like to work as much as possible during this time frame. My job is very flexible (thanks a million Bob) so my schedule depends on your schedule.
Almost anyone is able to care for Erik. If you can help, I will show you exactly what needs to be done, but here is a good idea of what a day would look like:
You will need to be able to 'spot' Erik Physically. He can walk around but is a little unsteady on his feet and needs a steady hand to guide him sometimes. He has never had a fall, but we need to be ready for one. Erik needs to be fed meals, given medications and reminded to do everyday things. He IS able to use the toilet on his own. He will need to be driven to appointments including therapies and/or doctor appointments. He will need someone to do 'homework' with him. It is all very simple stuff, but it is a lot of hard work for Erik, and he resists. Sometimes it is hard to get Erik out of bed, or up to eat. He will do it with enough pressure.
I want you all to know, that we really appreciate everything that you have done for us. We have been really taken care of. We are eating because of your food, we are smiling because of your cards, are minds are being taken off things because of your visits, we are able to pay our bills because of your donations. Thank you so much for everything that you have done. We can not Thank you enough for being such great friends and family. We are surrounded by wonderful people. Thanks for being so great.
Again, what we are asking here is a big deal. If you don't feel comfortable in helping in this way, it is ok. We feel like we have already tapped our 'helper' resources and this is really a lot to ask. Erik is very capable of a lot of things, but being a caregiver for Erik may be difficult emotionally and maybe a little physically (less so physically). Even one 4 hour time slot will help - so if you feel comfortable being a caregiver in this way, please let me know. The doctor told me that maybe in a month I will be able to leave Erik alone for 1/2 hour while I drop Tanner off at the babysitter. I am unsure how long Erik will need a full time caregiver, but it may be several months or longer?
Please call me or email as soon as possible if you have time to be help us in this way. If you want to ask questions before you commit, thats perfectly ok too.
Thank you, thank you, thank you,
Melissa
What I am asking here is a big deal. Erik needs 24 hour care and I need to get back to work. What I need is this; at least a 4 hour block of time during the weekday that you can care for Erik. It makes it even more difficult because will need to be 1 on 1 care which means children can not come. I have daycare for Tanner from around 7am-5pm and I would like to work as much as possible during this time frame. My job is very flexible (thanks a million Bob) so my schedule depends on your schedule.
Almost anyone is able to care for Erik. If you can help, I will show you exactly what needs to be done, but here is a good idea of what a day would look like:
You will need to be able to 'spot' Erik Physically. He can walk around but is a little unsteady on his feet and needs a steady hand to guide him sometimes. He has never had a fall, but we need to be ready for one. Erik needs to be fed meals, given medications and reminded to do everyday things. He IS able to use the toilet on his own. He will need to be driven to appointments including therapies and/or doctor appointments. He will need someone to do 'homework' with him. It is all very simple stuff, but it is a lot of hard work for Erik, and he resists. Sometimes it is hard to get Erik out of bed, or up to eat. He will do it with enough pressure.
I want you all to know, that we really appreciate everything that you have done for us. We have been really taken care of. We are eating because of your food, we are smiling because of your cards, are minds are being taken off things because of your visits, we are able to pay our bills because of your donations. Thank you so much for everything that you have done. We can not Thank you enough for being such great friends and family. We are surrounded by wonderful people. Thanks for being so great.
Again, what we are asking here is a big deal. If you don't feel comfortable in helping in this way, it is ok. We feel like we have already tapped our 'helper' resources and this is really a lot to ask. Erik is very capable of a lot of things, but being a caregiver for Erik may be difficult emotionally and maybe a little physically (less so physically). Even one 4 hour time slot will help - so if you feel comfortable being a caregiver in this way, please let me know. The doctor told me that maybe in a month I will be able to leave Erik alone for 1/2 hour while I drop Tanner off at the babysitter. I am unsure how long Erik will need a full time caregiver, but it may be several months or longer?
Please call me or email as soon as possible if you have time to be help us in this way. If you want to ask questions before you commit, thats perfectly ok too.
Thank you, thank you, thank you,
Melissa
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