Now that all of our proverbial "ducks" are in a row medically (had the ultrasound which revealed a clot in my right leg; Had an inferior vena cava filter inserted and was started on temporary high-dose anticoagulants to deal with that clot; Had an angiogram to give the plastic surgeon an idea of the vascularity in my lower extremities, three incision and drainage procedures, and began a course of prophalactic antibiotics), we are scheduled to go ahead with the reason that we're here at Froedtert.
The plastic surgeon came by late Friday to discuss the 6-7 hr grafting / tissue transfer surgery that I will have tomorrow. All the folks I talk to here mention what an awesome plastic surgeon Dr. Logiudice is (and Dr. Schmeling , my orthopedic surgeon claims his success rates are extremely high.). He seriously looks like he could still be in high-school....well, truthfully, LOTS of the medical docs look incredibly young to me. Guess that means I'm getting old. ;)
Here's the Scoop :
I learned that, because the tissues surrounding my ankle are incredibly thin (feel them on yourself....there is hardly anything there), and the hardware/bone is directly underneath the skin, I will be having procedure called a Free Flap.....in which the surgeon will transfer a portion from my gracilis muscle , along with [self]donor skin tissue to cover the affected area of my inside lower ankle. Again, because of the initial high-impact trauma to the soft tissues in my ankle and resultant swelling, this is apparently not that uncommon.
As I (naturally) inquired about the extent of cosmetic damage and scarring involved with this surgery, Dr. Logiudice did state that it would be a bit bulky and may take several months to a year to look more "normal." He went on to say that he will do his best to minimize cosmetic scarring (for example, obtaining tissue from as far up the inner thigh as possible, and pointing out that the inner ankle is a less obvious location than the outside of the ankle). I segwayed a bit and told him about Jade and Kai who are both cleft-affected, and how, with Jade in particular, we are continually reminding her of how beautiful she is despite the keloid scarring on her upper lip. I admitted that, despite all of my assurance to my child, now it is time for me to embrace this understanding and it is really hard.
Dr. Logiudice gracefully reminded me that I literally smashed my ankle. Really. In his words: "Chris if you would have had this climbing fall in another country, or even many parts of our own country [where there is no access to trauma center with cutting-edge medical technology], we would not even be having this conversation. There used to be, and in some places still is no other option other than amputation." (gulp...) The term he used I believe was "limb preservation," and yes, we recalled that this is an acceptance thing and regardless of how ugly things may turn out, I really have no choice in the matter. He smiled and reassured me that I will do fine. Sigh...
Sometimes to get exercise while I'm here, I will do "laps" in the wheelchair around the 5th floor and through the other units. Those include neuro, spinal cord injury, and stroke. Lemma tell ya, when I get back to my room (despite how sore my ankle or sacrum is) I feel really blessed. Man, some of those folks are lucky if they will ever be able to talk or feed themselves or breathe on their own again....ever. I don't know how I would deal with that and hope I never have to.
Some people that I see here are always alone. Every time I pass their room they are sitting in a wheelchair in the corner or laying in bed. Really, really sad. I am lucky to have a husband that has stayed with me nearly every night, and parents and a mother-in-law who we trust to take good care of our kids. I have wonderful family and friends who have stood by me every step of the way (excuse me as I wipe a tear while writing this...), salt-of-the-earth teachers at my son's school and staff at Scott's school who are bringing meals, and even a great hairdresser who squeezed me in for a hilight when I pleaded with her that I want to feel somewhat like a human being as I lay in a hospital bed for a couple of weeks (she went all out on the stylin' then....thought she'd give me some "come hither" curls that Scott would enjoy. Hee hee....)
SO...tomorrow is a big day. Am I scared? Heck yeah! One of the internists that drops by my room almost every day to check in said "you'll do some grieving." I'm kinda preparing for that. There will be some pain, of course, but that's what good drugs are for. I'm mostly concerned about needing to continue laying in bed with my ankle elevated for the weeks to come and how my sacrum will do with that. (I ain't got no booty and that won't change until I'm up and able to do steps and other things that strengthen the gluteal muscles). There will be a six-week recovery period in which I will need to keep my leg elevated at nearly all times. I also learned today that I will need to refrain from drinking coffee and eating chocolate (seriously) because caffiene constricts blood flow, and we don't want that to happen in an extremity like an ankle. I do think I'm gonna ask the surgeon if red wine is okay though....because I hear it actually helps with blood flow! We'll see.... ;)
Keep those prayers and positive energy comin'!
Sunday, January 29, 2012
Sunday, January 22, 2012
Setbacks and Stamina...
This morning Scott and I recalled that we have been going through this recovering thing since November 30th. In a way, I had to take a step back and marvel at how really awful this whole accident experience has been and how far I have actually come (I tend to minimize things...for coping I guess). Seriously. An ambulance ride to the ER....where they cut off my clothing and climbing harness, hooked me up to a drip of dilaudid, and proceeded to put me through lots of uncomfortable tests and such. I felt like, well....a marionette. Intuitively, I knew that my pelvis was in bad shape because it wasn't connecting. Luckily the medical folks knew what they were doing and they kept me pretty doped up.
After all of the x-rays and CT scans, the verdict seemed a tad dire.... expressing that I should expect an 8-10 month recovery period, the resident orthopedic doc assured us of the competency of the orthopedic team and the brilliance of the orthopedic surgeon who would do my surgeries. However, he emphasized what a horrible break my ankle / leg was......and in my medicated state, I don't know if I fully caught the magnitude of what he was saying. (Scott did, because that was about when he passed out. [BTW, we did get a $398 bill for that from Froedtert.]) From what I remember, the doc mentioned that I'd suffered a vertical shear type of pelvic fracture, including two fractured pubic rami and fractured sacrum which would require surgery, and may or may not result in neurological complications. Then he went on to discuss the severity of my pilon ankle fracture and the potential related complications including: loss of range of motion, osteoarthritis, deformity, implant-related problems, soft-tissue complications including infection and nerve damage, and amputation. Naturally, that last potential complication raised my ire a bit, but I figured that it is the good doctor's job to spell out all worst-case scenarios to put them "on the table."
I seem to have been very lucky in the sense that my sacrum "fit" back together well and there appears to be no evident nerve damage. In addition, the doc was surgically able to retain the integrity of the "architecture" of my ankle . It seems pretty miraculous that he was able to pull together remnants of bone to re-create the ankle structure. With everything appearing to be going well, I did not anticipate a major setback.
Well....apparently the intense trauma of my fall created a great deal of swelling, which, while minimized by the staging of the ankle surgeries (3 weeks apart), continued nonetheless to create problems with the outer soft tissue healing...which is an issue because the bone will not heal unless the soft tissues surrounding it are healthy. SO...we were surprised last week to see a few patches of necrotic (dead) tissue along the suture line which unfortunately have spread. It was really gross (and scary) to see, and even scarier to talk about with the surgeon and physician assistant.
The upshot is the need for further surgery (Monday)......to remove the affected soft-tissues in the hope of regenerating healthy tissue. The good news is that there is good, vascular healthy tissue underneath. Best case scenario: The bad stuff is removed by a process called debridement, the area is washed and a vac is temporarily inserted to keep the area clean, and eventually skin is pulled up and stitched in place over the affected area. Next best case scenario: A skin graft would happen, in which a vascular tissue sample would be surgically removed from one bodily area (usually side or thigh) and is grafted over the affected tissue above the tibia. This would be a longer procedure, lasting 10-14 days. (It is important to clear the tissues of anything that might do damage to the tendons or the plating on the bone.) The truth of the matter is that, well, we need to do whatever we have to do....no matter how much it sucks.
I've always considered my legs to be one of my greatest assets. This experience is leading me to re-define that. It is leading me to re-define and re-think a lot.
So, how are the kids holding up? Today both of the kiddos had some challenging behaviors....lots of irritability and poor frustration tolerance. This morning Jade broke down crying, looking at me intently while muttering "I don't want you to go in the hospital again." I held her close and we cried together briefly.... I reassured her that I will be okay and that I will always be here for her, even if there are moments that I need to focus on my healing. I also told her how much I miss running and playing with her and Kai. (Boy was it hard not to let the dam open, but I managed to do okay).
Jade did mention that she has talked with the school guidance counselor twice since my accident. The last time she said that she told Mrs. B that she was afraid that I would go in the hospital and never come back. I reassured her again....(those old abandonment issues are always there) and she remarked that the best gift she can give is to do her best in school and not worry. (I put a little love note in her lunchbox for tomorrow. Shhhh ;)
Kai....well, quite honestly I have felt lucky to have the help of family (Scott, my folks and Scott's mom) and his ABA therapists to deal with him because frankly, my reserve is quite low. Folks have kindly suggested all along that I "let go" of feeling the need to constantly be there for his issues. I guess this has been my "shot in the arm" to do just that.
SO....tomorrow is a new day with lots of unknowns. I am thankful for all of the healing that has taken place and the support, prayers and positive energy folks have sent my way! This is a journey that I couldn't do alone. I just keep pluggin' away and have a sense of trust that things will be as they are meant to be.
Breathe....
After all of the x-rays and CT scans, the verdict seemed a tad dire.... expressing that I should expect an 8-10 month recovery period, the resident orthopedic doc assured us of the competency of the orthopedic team and the brilliance of the orthopedic surgeon who would do my surgeries. However, he emphasized what a horrible break my ankle / leg was......and in my medicated state, I don't know if I fully caught the magnitude of what he was saying. (Scott did, because that was about when he passed out. [BTW, we did get a $398 bill for that from Froedtert.]) From what I remember, the doc mentioned that I'd suffered a vertical shear type of pelvic fracture, including two fractured pubic rami and fractured sacrum which would require surgery, and may or may not result in neurological complications. Then he went on to discuss the severity of my pilon ankle fracture and the potential related complications including: loss of range of motion, osteoarthritis, deformity, implant-related problems, soft-tissue complications including infection and nerve damage, and amputation. Naturally, that last potential complication raised my ire a bit, but I figured that it is the good doctor's job to spell out all worst-case scenarios to put them "on the table."
I seem to have been very lucky in the sense that my sacrum "fit" back together well and there appears to be no evident nerve damage. In addition, the doc was surgically able to retain the integrity of the "architecture" of my ankle . It seems pretty miraculous that he was able to pull together remnants of bone to re-create the ankle structure. With everything appearing to be going well, I did not anticipate a major setback.
Well....apparently the intense trauma of my fall created a great deal of swelling, which, while minimized by the staging of the ankle surgeries (3 weeks apart), continued nonetheless to create problems with the outer soft tissue healing...which is an issue because the bone will not heal unless the soft tissues surrounding it are healthy. SO...we were surprised last week to see a few patches of necrotic (dead) tissue along the suture line which unfortunately have spread. It was really gross (and scary) to see, and even scarier to talk about with the surgeon and physician assistant.
The upshot is the need for further surgery (Monday)......to remove the affected soft-tissues in the hope of regenerating healthy tissue. The good news is that there is good, vascular healthy tissue underneath. Best case scenario: The bad stuff is removed by a process called debridement, the area is washed and a vac is temporarily inserted to keep the area clean, and eventually skin is pulled up and stitched in place over the affected area. Next best case scenario: A skin graft would happen, in which a vascular tissue sample would be surgically removed from one bodily area (usually side or thigh) and is grafted over the affected tissue above the tibia. This would be a longer procedure, lasting 10-14 days. (It is important to clear the tissues of anything that might do damage to the tendons or the plating on the bone.) The truth of the matter is that, well, we need to do whatever we have to do....no matter how much it sucks.
I've always considered my legs to be one of my greatest assets. This experience is leading me to re-define that. It is leading me to re-define and re-think a lot.
So, how are the kids holding up? Today both of the kiddos had some challenging behaviors....lots of irritability and poor frustration tolerance. This morning Jade broke down crying, looking at me intently while muttering "I don't want you to go in the hospital again." I held her close and we cried together briefly.... I reassured her that I will be okay and that I will always be here for her, even if there are moments that I need to focus on my healing. I also told her how much I miss running and playing with her and Kai. (Boy was it hard not to let the dam open, but I managed to do okay).
Jade did mention that she has talked with the school guidance counselor twice since my accident. The last time she said that she told Mrs. B that she was afraid that I would go in the hospital and never come back. I reassured her again....(those old abandonment issues are always there) and she remarked that the best gift she can give is to do her best in school and not worry. (I put a little love note in her lunchbox for tomorrow. Shhhh ;)
Kai....well, quite honestly I have felt lucky to have the help of family (Scott, my folks and Scott's mom) and his ABA therapists to deal with him because frankly, my reserve is quite low. Folks have kindly suggested all along that I "let go" of feeling the need to constantly be there for his issues. I guess this has been my "shot in the arm" to do just that.
SO....tomorrow is a new day with lots of unknowns. I am thankful for all of the healing that has taken place and the support, prayers and positive energy folks have sent my way! This is a journey that I couldn't do alone. I just keep pluggin' away and have a sense of trust that things will be as they are meant to be.
Breathe....
Tuesday, January 17, 2012
Thoughts on "Trauma"
I have been seeing the word trauma quite a bit lately. Having ridden in an ambulance and ushered through the "trauma" departments of sorts....staying on the "trauma" unit, hearing my doctors talk of the "trauma" to my ankle and body, etc. Somehow my mind segways and I begin to think about psychological trauma....such as that which our son endured in his early years.
I mentioned to the spine doctor yesterday that, despite the normal x-rays and CT scans, my spine feels "different." For example, I can turn my head and hear a slight crunch in my neck (which is normal, BTW). Despite injuries becoming "fixed" or "healed" most folks say that things are still different. That's just the way things are.
This morning as I contemplate some of the quirks that Kai continues to have, I realize that these quirks are probably the result of his own trauma. While we would like to gloss over or forget about the hunger, neglect, and deprivation of his early years, it will never be completely eradicated from his psyche. He will probably always have "food issues" to some extent. He may always be tiny. He may always have problems with trust (although we certainly hope not.) These things are the result of early trauma which can be helped through therapy, good nutrition and positive parenting, though not eradicated completely. As I talk to other adoptive parents, this tends to be a common realization at some point.
With these things in mind, I realize that there are degrees of healing....We are always hoping for the degree that ends on the "cured" side. Our resounding hope is that we have the great doctors and professionals to get us there, the nurturing to sustain us, and the internal strength and determination to carry-on.
I mentioned to the spine doctor yesterday that, despite the normal x-rays and CT scans, my spine feels "different." For example, I can turn my head and hear a slight crunch in my neck (which is normal, BTW). Despite injuries becoming "fixed" or "healed" most folks say that things are still different. That's just the way things are.
This morning as I contemplate some of the quirks that Kai continues to have, I realize that these quirks are probably the result of his own trauma. While we would like to gloss over or forget about the hunger, neglect, and deprivation of his early years, it will never be completely eradicated from his psyche. He will probably always have "food issues" to some extent. He may always be tiny. He may always have problems with trust (although we certainly hope not.) These things are the result of early trauma which can be helped through therapy, good nutrition and positive parenting, though not eradicated completely. As I talk to other adoptive parents, this tends to be a common realization at some point.
With these things in mind, I realize that there are degrees of healing....We are always hoping for the degree that ends on the "cured" side. Our resounding hope is that we have the great doctors and professionals to get us there, the nurturing to sustain us, and the internal strength and determination to carry-on.
Thursday, January 12, 2012
Welcome to the Geriatric ward
It seriously looks like a geriatric ward here at our house. I know it is temporary, but it bugs the heck outta me. Sure we've got the hospital bed, the commode, the walker and the wheelchair, but as of recent, my physical therapist has recommended that I acquire a long shower-chair that I can use to wash up while keeping my cast outside of the tub (that is, after I get clearance to do steps). My folks found one and brought it over yesterday...apparently a great deal at a second-hand shop...still had the tags on it. I should be excited right?!
It has been three weeks since my ankle surgery and six weeks since the accident. The docs told me to expect an 8-10 month recovery (to get back to "normal"), and somehow I thought I could beat that. Generally it takes 6-8 weeks for a broken bone to heal. I have to remind myself constantly that it is physically not possible to will the process to happen more quickly.
Yesterday was a tough day. I'm doing more stuff....getting up and about and sitting (which means my ankle is not elevated). I'm also trying to take as little narcotic pain meds as possible. Well...yesterday culminated in my being a tearful mess because the pain had gotten outta control. I seem to forget about how bad the break was and that it is nothing short of amazing that my surgeon could even fix it (I'll need to ask just how many screws are in there cuz I really don't know!).
Of course, when in this "mental space" I also think about how I'm bummed because I can't interact with the kids in an active way like I'm used to. They do seem to have adjusted well....although it is hard for me to give up my role as the "go to" person of the family. Yeah, my silly pride I guess. I am just thankful to have family that have stepped up to the plate and are helping out, and friends that continue to lift my spirits along the way. An arduous process it is! (okay, now I'm thinking of Yoda...."mmm, an arduous process it is!")
Sigh....one day at a time I guess.
It has been three weeks since my ankle surgery and six weeks since the accident. The docs told me to expect an 8-10 month recovery (to get back to "normal"), and somehow I thought I could beat that. Generally it takes 6-8 weeks for a broken bone to heal. I have to remind myself constantly that it is physically not possible to will the process to happen more quickly.
Yesterday was a tough day. I'm doing more stuff....getting up and about and sitting (which means my ankle is not elevated). I'm also trying to take as little narcotic pain meds as possible. Well...yesterday culminated in my being a tearful mess because the pain had gotten outta control. I seem to forget about how bad the break was and that it is nothing short of amazing that my surgeon could even fix it (I'll need to ask just how many screws are in there cuz I really don't know!).
Of course, when in this "mental space" I also think about how I'm bummed because I can't interact with the kids in an active way like I'm used to. They do seem to have adjusted well....although it is hard for me to give up my role as the "go to" person of the family. Yeah, my silly pride I guess. I am just thankful to have family that have stepped up to the plate and are helping out, and friends that continue to lift my spirits along the way. An arduous process it is! (okay, now I'm thinking of Yoda...."mmm, an arduous process it is!")
Sigh....one day at a time I guess.
Tuesday, January 3, 2012
Patience...
I've come to the realization that I am not a good patient. I am not a patient patient either. Even my surgeon's and his tech said so. First of all, every time I see the doc I have lots of questions. (Apparently I'm supposed to just trust the doc and the healing process). Granted, my surgeon is the "go to" guy for trauma surgery and is the best in the area. He's got 25 years of experience, is the chief orthopedic surgeon and Vice Chair of orthopedics at the Medical College of WI. But here's the thing.....I want to have a clear understanding of what is going on in regard to my injuries. Vagueness doesn't help much, and my asking for clarifications should be welcomed and viewed as patient empowerment.
Recovery is scary, painful and very uncomfortable....riddled with lots of unknowns. I get that. Perhaps I'm looking for reassurance, along with the thousands of other patients my surgeon has dealt with, and that gets old. Perhaps it is a "personality thing" and my doc doesn't have that "bedside manner". Maybe he is not able to provide reassurance at this time because there are too many unknowns. Truth be told, if given the choice, I would much rather have a top-notch surgeon than a "good enough" surgeon with a great bedisde manner. So I should quit my belly-achin' right?
Here are images of the injuries. The top is a 3-D pic of my tibial (pilon) fracture. Yeah, it's pretty nasty (amazing how they can get such a great image though.). The bottom is a pic of my pelvic injury with repaired sacrum.
They're anticipating that my pelvic injuries will heal on their own, while I continue on general bed-rest with minimal movement. I'm able to sit up for 30-40 minutes at a time, but otherwise, need to be mostly horizontal with my leg elevated.
Speaking of leg, here are a couple of x-rays of my repaired ankle. It is pretty impressive what can be done:
The doc mentioned swimming as a potential part of my rehab, and I questioned whether or not I will even be able to float, given all of that internal metal. ;)
The thought is that it seems I am doing quite well, according to the nurse who comes to our home. She also encourages me not to worry, and mentions that my lack of patience is a good sign that my body is healing. Well......my fingers are crossed!
Recovery is scary, painful and very uncomfortable....riddled with lots of unknowns. I get that. Perhaps I'm looking for reassurance, along with the thousands of other patients my surgeon has dealt with, and that gets old. Perhaps it is a "personality thing" and my doc doesn't have that "bedside manner". Maybe he is not able to provide reassurance at this time because there are too many unknowns. Truth be told, if given the choice, I would much rather have a top-notch surgeon than a "good enough" surgeon with a great bedisde manner. So I should quit my belly-achin' right?
Here are images of the injuries. The top is a 3-D pic of my tibial (pilon) fracture. Yeah, it's pretty nasty (amazing how they can get such a great image though.). The bottom is a pic of my pelvic injury with repaired sacrum.
 |
| Right leg pilon tibial fracture before surgery |
 |
| Pelvic injury to superior and inferior pubic ramus (on bottom left). Repaired sacrum (screws inserted). X-ray taken while external fixator was in place (since removed) |
Speaking of leg, here are a couple of x-rays of my repaired ankle. It is pretty impressive what can be done:
The doc mentioned swimming as a potential part of my rehab, and I questioned whether or not I will even be able to float, given all of that internal metal. ;)
The thought is that it seems I am doing quite well, according to the nurse who comes to our home. She also encourages me not to worry, and mentions that my lack of patience is a good sign that my body is healing. Well......my fingers are crossed!
Thursday, December 29, 2011
On the mend...
My apologies for being out of the blogosphere for a while...I find that sitting with a computer in my lap for extended periods can be really uncomfortable. I'm also feeling a drain in creative thought...probably because of the drugs I'm on (far out dude!). While I'm very thankful for good pain meds, I really look forward to getting off of them. I am ready to move on and get going with things...but ugh, I probably have another month of bedrest. After 3 months (post accident) I will be able to bear weight on my ankle.
It has been about a month since the "fall" and a lot has happened. I had my second ankle surgery last Wednesday, in which they removed my ex-fix and attached plates and screws into the bones interiorly. I guess the surgery took 3 and 1/2 hours...but it was successful in the sense that (in the words of my surgeon) the "architecture of the ankle bones was restored." There were a few small pieces of bone that needed to be removed because they had been crushed, but this did not compromise the integrity of the ankle. Functionability is still in question, as it sounds like some flexibility will be lost.
Recovery has not been very easy. The evening of the surgery I was in the most intense pain I think I have ever felt in my life. There was some concern that I may had suffered something called compartment syndrome, but after opening the wound dressings and waiting for a while, it appeared that the pain and swelling was the result of my ankle being wrapped too tightly. The type of injury I sustained to my ankle is called a pilon fracture , and from what I understand, the expected recovery from this is very difficult due to the crushing nature of the fracture and resultant swelling. Ugh...
I am now ex-fix-less! My pelvic ex-fix needed to be removed a couple of weeks ago due to an infection in the pin-sites. That removal experience was quite interesting. Right in the office as the doc was examining things, he stated "Hmm...this has to come out. Her body isn't liking it in there." I had thought this would mean yet another surgery. NOPE! The tech (a guy named Gary who has worked in the orthopedic unit for 40 years) brought out a Sears Craftsman wrench and seriously went to town unscrewing this apparatus from my pelvic bones. Yup, I was conscious, and chose not to watch (Scott chose not to watch either). It was the oddest sensation...feeling something becoming unscrewed from within my body. I commented that I felt like a 2x4. There was a little pain, but more odd discomfort.
I WAS able to be home on Christmas! I couldn't wait to be home with the kids and Scott after having been in the hospital for so long. We enjoyed hosting Christmas at our house with Scott's family on Christmas Day. Scott played host while I laid in my bed in the living room. It was very interesting to watch him take on these roles (the host, the multitasker, the maid, the nurse, and Mr. mom). That's material for another blog post. Here's the view of our Christmas tree from my bed:
It has been about a month since the "fall" and a lot has happened. I had my second ankle surgery last Wednesday, in which they removed my ex-fix and attached plates and screws into the bones interiorly. I guess the surgery took 3 and 1/2 hours...but it was successful in the sense that (in the words of my surgeon) the "architecture of the ankle bones was restored." There were a few small pieces of bone that needed to be removed because they had been crushed, but this did not compromise the integrity of the ankle. Functionability is still in question, as it sounds like some flexibility will be lost.
Recovery has not been very easy. The evening of the surgery I was in the most intense pain I think I have ever felt in my life. There was some concern that I may had suffered something called compartment syndrome, but after opening the wound dressings and waiting for a while, it appeared that the pain and swelling was the result of my ankle being wrapped too tightly. The type of injury I sustained to my ankle is called a pilon fracture , and from what I understand, the expected recovery from this is very difficult due to the crushing nature of the fracture and resultant swelling. Ugh...
I am now ex-fix-less! My pelvic ex-fix needed to be removed a couple of weeks ago due to an infection in the pin-sites. That removal experience was quite interesting. Right in the office as the doc was examining things, he stated "Hmm...this has to come out. Her body isn't liking it in there." I had thought this would mean yet another surgery. NOPE! The tech (a guy named Gary who has worked in the orthopedic unit for 40 years) brought out a Sears Craftsman wrench and seriously went to town unscrewing this apparatus from my pelvic bones. Yup, I was conscious, and chose not to watch (Scott chose not to watch either). It was the oddest sensation...feeling something becoming unscrewed from within my body. I commented that I felt like a 2x4. There was a little pain, but more odd discomfort.
I WAS able to be home on Christmas! I couldn't wait to be home with the kids and Scott after having been in the hospital for so long. We enjoyed hosting Christmas at our house with Scott's family on Christmas Day. Scott played host while I laid in my bed in the living room. It was very interesting to watch him take on these roles (the host, the multitasker, the maid, the nurse, and Mr. mom). That's material for another blog post. Here's the view of our Christmas tree from my bed:
Jade thinks I'm pretty lucky to be able to sleep by the Christmas tree, and asked if I got to see Santa on Christmas eve. ("Nope..." I said. "I was snuggled in, fast asleep.")
Every day is a new one. I have felt blessed to have so many people...fantastic friends and family that have come to visit or send caring thoughts. These are the little messages of hope that help to get me through each day.
Of course, then there are the hoodlums. My husband too. All blessings.
Saturday, December 17, 2011
Legends of the Fall
....FINALLY getting around to writing a blog post. It is odd how those "lucid moments" of writing clarity can become incredibly scarce....mainly as a result of the cloudy-headedness of pain medications and such. So, if my writing seems to be a little off today, blame the meds.
As many of you know, on November 30th I fell about 27 feet while climbing at our climbing gym. I must have gone over the story hundreds of times by now.....with nurses, doctors, and friends. The common question is always "Arent you clipped into a rope or something?" and my answer is always "yes...yes....we are. And this was one very stupid example of what can happen when you're preoccupied and in a hurry." (I only had an hour before getting my son to an appointment that afternoon.). Yeah, I totally forgot to clip into the autobelay and climbed as if I was clipped in. When I was about three feet from the top I lunged for a handhold and, well.... found myself on the floor with several folks around me, gawking. My son included (while asking "mommy what happened?")
Surprisingly, I never lost consciousness (I'm way too stubborn). I do remember wiggling my toes and moving my body a bit to assure myself that I did not suffer a spinal cord injury. Of course, folks asked me to lay still, and the ambulance arrived quickly. I also remember apologizing over and over to Craig, manager of the gym, who was holding my head steady. I kept reassuring him that his staff do a great job, I made a stupid mistake, and that I would never sue." (I guess I also uttered quite few swear-words and eplitaves, which folks from the gym were surprised to hear coming from me [I guess shock will do that to ya.].
Before very little time had passed, the ambulance had arrived and Craig mentioned that my husband was on his way. The EMT's started an IV of dilaudid, checked vitals etc., loaded me onto a backboard, and brought me to Froedtert Hospital's ER.
The experience was a blur really...although I remember bits and pieces of it. I remember the ER folks having to cut off all of my clothing, including my harness and climbing shoes. I was taken to get CT scans and x-rays, while the pain meds kept comin', which was quite a relief. Eventually Scott showed up with Kai, lookin' scared and very concerned. (Kai did not appear to know what happened and continued to seem pretty clueless, which is not a bad thing.). When the doctor came into the room to tell us the results of the CT and x-rays, Scott became white-as-a-ghost. One of the nurses stated "get another room prepped, I think we have another patient on our hands." Scott sat down and started twitching and yawning.... and even in my dilaudid-enhanced state, it was really quite comical to watch. Even the ER staff chuckled about my "knight in shining armor" passing out with our son in-tow, while I continued to let folks poke and prod.
It was most gruesome when the doc informed me that my leg would need to be in traction, therefore he would need to drive a long metal pin through my femur to attach a 20 lb weight. I was told that I would receive local anesthesia and a sedative (no, I could not be put under.). I did not watch....but I did see the nurses faces cringe as the pin was screwed in. Once again, thank God for pain meds and chemistry)
My diagnosis was as follows: Right tibial-fibular fracture; Right superior and inferior pubic ramus fracture, right pilon fracture, L1 vertebral body fracture, L1, L4 and L5 transverse process fractures, and boken rib on R7. Treatment to include an external fixator on the ankle and pelvis. Plan to have additional surgery on the ankle in 3 weeks. (My thoughtful hubby lovingly snapped this photo of me, looking oh so very patient-like. Here you can see the ex-fixes. I also need to wear a TLSO (brace) any time I sit above thirty degrees. We jokingly refer to it as my "turtle shell".
As many of you know, on November 30th I fell about 27 feet while climbing at our climbing gym. I must have gone over the story hundreds of times by now.....with nurses, doctors, and friends. The common question is always "Arent you clipped into a rope or something?" and my answer is always "yes...yes....we are. And this was one very stupid example of what can happen when you're preoccupied and in a hurry." (I only had an hour before getting my son to an appointment that afternoon.). Yeah, I totally forgot to clip into the autobelay and climbed as if I was clipped in. When I was about three feet from the top I lunged for a handhold and, well.... found myself on the floor with several folks around me, gawking. My son included (while asking "mommy what happened?")
Surprisingly, I never lost consciousness (I'm way too stubborn). I do remember wiggling my toes and moving my body a bit to assure myself that I did not suffer a spinal cord injury. Of course, folks asked me to lay still, and the ambulance arrived quickly. I also remember apologizing over and over to Craig, manager of the gym, who was holding my head steady. I kept reassuring him that his staff do a great job, I made a stupid mistake, and that I would never sue." (I guess I also uttered quite few swear-words and eplitaves, which folks from the gym were surprised to hear coming from me [I guess shock will do that to ya.].
Before very little time had passed, the ambulance had arrived and Craig mentioned that my husband was on his way. The EMT's started an IV of dilaudid, checked vitals etc., loaded me onto a backboard, and brought me to Froedtert Hospital's ER.
The experience was a blur really...although I remember bits and pieces of it. I remember the ER folks having to cut off all of my clothing, including my harness and climbing shoes. I was taken to get CT scans and x-rays, while the pain meds kept comin', which was quite a relief. Eventually Scott showed up with Kai, lookin' scared and very concerned. (Kai did not appear to know what happened and continued to seem pretty clueless, which is not a bad thing.). When the doctor came into the room to tell us the results of the CT and x-rays, Scott became white-as-a-ghost. One of the nurses stated "get another room prepped, I think we have another patient on our hands." Scott sat down and started twitching and yawning.... and even in my dilaudid-enhanced state, it was really quite comical to watch. Even the ER staff chuckled about my "knight in shining armor" passing out with our son in-tow, while I continued to let folks poke and prod.
It was most gruesome when the doc informed me that my leg would need to be in traction, therefore he would need to drive a long metal pin through my femur to attach a 20 lb weight. I was told that I would receive local anesthesia and a sedative (no, I could not be put under.). I did not watch....but I did see the nurses faces cringe as the pin was screwed in. Once again, thank God for pain meds and chemistry)
My diagnosis was as follows: Right tibial-fibular fracture; Right superior and inferior pubic ramus fracture, right pilon fracture, L1 vertebral body fracture, L1, L4 and L5 transverse process fractures, and boken rib on R7. Treatment to include an external fixator on the ankle and pelvis. Plan to have additional surgery on the ankle in 3 weeks. (My thoughtful hubby lovingly snapped this photo of me, looking oh so very patient-like. Here you can see the ex-fixes. I also need to wear a TLSO (brace) any time I sit above thirty degrees. We jokingly refer to it as my "turtle shell".
I remained at Froedtert for a week and a half, with the last four days in the rehab unit. On Monday evening I returned home. Our living room is beautifully decorated with a hospital bed and commode, not to mention a sleek black wheelchair.
On Wednesday I return to Froedtert for a second ankle surgery, and it is expected that I will be there for 4 to 5 days. We are discussing how to weave Christmas into this whole experience....it may be a little tricky. We'll definitely have to be creative.
The silver lining in all of this has been the renewed sense of connection and support of family, friends, co-workers and community. Scott's work has granted him leave through the Family Medical Leave Act up to three months. My parents have come to stay with us Monday through Friday to help with the kids, and my mother-in-law helps out with the kids on the weekends. So many wonderful people have reached out to us and it has been such a blessing! (If you are one of those people reading this, I'm sending you a big cyber-hug!)
Monday, November 21, 2011
Surprises...
About a week ago we attended parent-teacher conferences for both kiddos. I had braced myself to hear about how Kai might be squeaking by in his mainstream classroom and how he probably sits quietly.....mostly unnoticed, while other kids play around him. I had also anticipated hearing that Jade is thriving now that she is in first grade as she is a naturally curious learner.
Turns out, Kai is mister social. Yes, our kiddo on the autism spectrum....the one who we were told may never be verbal....is hamming it up with his classmates. He is right in the mix. Not stimming in the corner and occasionally watching the other children, but playing with them. Having fun with them. The kids may not always understand him due to his speech issues, but it seems he has related through the language of play, which is awesome.
....and get this. Look at the picture below (These are the "finalist" drawings of the Willow Springs students to be voted on for the school T-shirt.)
Kai's picture is the one in the lower left-hand corner with the four smiling people. His was actually a finalist! (Not the winner, but hey...who cares. We're impressed with the effort!)
I had the opportunity to volunteer in his classroom on Thursday, and was able to see the Kai-ster in action. His teacher was not lying at that conference. He was actually the little social-bug she said he was. It was great to see him laughing and having fun.
Here's the kicker: They're looking to exit him from special ed next year, but keep intensive speech services. Three cheers for early intervention hey?!
Then there's little Miss Jade. Miss Jade who is naturally pretty smart. Well, turns out that she is little miss nosey-pants and can have a hard time focusing on herself. Jade is also a social-bug, but does struggle to concentrate on her own learning without being distracted by what other kids are doing. Doesn't surprise me I guess.
I was glad to hear that Jade has started talking with the kids in her class about China and adoption. Apparently Jade's teacher was sharing a book about China one day, and Jade took this opportunity to explain China's "one child policy" to the group. She also wrote the her name in Chinese characters on the white-board and told the class its meaning. Now Jade is needing to field lots of questions and is coming home talking about how to answer them. [Explaining the difference between "stepmom" and "birthmom" was interesting, as other kids in the class talk about step-parents, which Jade thought was the same concept as birth-parents.] Sigh....we're treading very close to the actual "where do babies really come from?" question, and my attempts to answer in an age-appropriate way are becoming challenged! She's only SIX for cryin out loud!
As we venture toward the season of giving thanks, I am looking back on the past and reflecting on where we are today. [ I am also thinking about yesterday, during a time of sharing at my parent's place of worhip. I mentioned that I frequently wish I was back in the workforce, feeling as if I was making a difference again and enjoying the respect of colleagues and other professionals. As the folks in the group watched my children play, I was reminded of how being a mom to these kiddos IS making a difference. Sometimes it is hard to see the forest through the trees!] As I continue to walk this journey one day at a time, today I am feeling gratitude.
Reminder to self: One. day. at. a. time. Breathe.....
Turns out, Kai is mister social. Yes, our kiddo on the autism spectrum....the one who we were told may never be verbal....is hamming it up with his classmates. He is right in the mix. Not stimming in the corner and occasionally watching the other children, but playing with them. Having fun with them. The kids may not always understand him due to his speech issues, but it seems he has related through the language of play, which is awesome.
....and get this. Look at the picture below (These are the "finalist" drawings of the Willow Springs students to be voted on for the school T-shirt.)
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| Add caption |
I had the opportunity to volunteer in his classroom on Thursday, and was able to see the Kai-ster in action. His teacher was not lying at that conference. He was actually the little social-bug she said he was. It was great to see him laughing and having fun.
Here's the kicker: They're looking to exit him from special ed next year, but keep intensive speech services. Three cheers for early intervention hey?!
Then there's little Miss Jade. Miss Jade who is naturally pretty smart. Well, turns out that she is little miss nosey-pants and can have a hard time focusing on herself. Jade is also a social-bug, but does struggle to concentrate on her own learning without being distracted by what other kids are doing. Doesn't surprise me I guess.
I was glad to hear that Jade has started talking with the kids in her class about China and adoption. Apparently Jade's teacher was sharing a book about China one day, and Jade took this opportunity to explain China's "one child policy" to the group. She also wrote the her name in Chinese characters on the white-board and told the class its meaning. Now Jade is needing to field lots of questions and is coming home talking about how to answer them. [Explaining the difference between "stepmom" and "birthmom" was interesting, as other kids in the class talk about step-parents, which Jade thought was the same concept as birth-parents.] Sigh....we're treading very close to the actual "where do babies really come from?" question, and my attempts to answer in an age-appropriate way are becoming challenged! She's only SIX for cryin out loud!
As we venture toward the season of giving thanks, I am looking back on the past and reflecting on where we are today. [ I am also thinking about yesterday, during a time of sharing at my parent's place of worhip. I mentioned that I frequently wish I was back in the workforce, feeling as if I was making a difference again and enjoying the respect of colleagues and other professionals. As the folks in the group watched my children play, I was reminded of how being a mom to these kiddos IS making a difference. Sometimes it is hard to see the forest through the trees!] As I continue to walk this journey one day at a time, today I am feeling gratitude.
Reminder to self: One. day. at. a. time. Breathe.....
Sunday, October 30, 2011
Parenting Enhancement
A very strange metamorphasis has been happening within me throughout the past six months or so. I have decided to make a commitment to physical and emotional well-being in a way that puts myself first. I know. That sounds selfish and scary. I mean, what kind of mom puts her own needs before the needs of her family?
This February it will have been three years that Kai has been with us. These have been three very difficult, tiring years. They have been years filled with doctor appointments, assessments, neuropsych testing, occupational, physical and intensive speech therapies, and intensive weekly ABA therapy. While they have been three very productive years, they have been years of complete and utter immersion in my kids' world....sometimes at the expense of things I once enjoyed.
The most difficult thing I realized that I had given up was personal goal-direction. Since July of '07, all of my goals have been directed toward my children......Diving wholeheartedly into attachment-parenting with Jade; helping Kai to achieve milestone after milestone, or guiding him with speech/language articulation, etc. Providing optimal parenting through structure and consistency to two kids with troubled backgrounds has been a worthwhile yet arduous task.
The passion that I have thurst into my parenting is necessarily becoming re-directed. I've always needed some kind of personal challenge, and have found that if I put more energy into those self-actualizing pursuits, it only enhances my parenting. Working out and climbing are a necessity, as are the creative outlets of cooking and art/stained glass. Getting together with good friends is a non-negotiable. Teaching families about healthy lifestyles, volunteering at my daughter's school, and serving on our village parks and rec board have helped me maintain my self-awareness as an educated and articulate woman who is more than just a mom to a kid with "needs". Seriously, those "needs" can be omni-present and always will be, unless we/I make a dedicated effort to program self-nurturing into the wiring of my brain. So far.....it has been working.
There is a vitality to life that I am rediscovering.....and I am content with the fact that I may not always be able to share these moments with my kids. I am feeling less and less guilty about spending time "away" for periods of time in order to return feeling refreshed and non-resentful. This is progress.
This February it will have been three years that Kai has been with us. These have been three very difficult, tiring years. They have been years filled with doctor appointments, assessments, neuropsych testing, occupational, physical and intensive speech therapies, and intensive weekly ABA therapy. While they have been three very productive years, they have been years of complete and utter immersion in my kids' world....sometimes at the expense of things I once enjoyed.
The most difficult thing I realized that I had given up was personal goal-direction. Since July of '07, all of my goals have been directed toward my children......Diving wholeheartedly into attachment-parenting with Jade; helping Kai to achieve milestone after milestone, or guiding him with speech/language articulation, etc. Providing optimal parenting through structure and consistency to two kids with troubled backgrounds has been a worthwhile yet arduous task.
The passion that I have thurst into my parenting is necessarily becoming re-directed. I've always needed some kind of personal challenge, and have found that if I put more energy into those self-actualizing pursuits, it only enhances my parenting. Working out and climbing are a necessity, as are the creative outlets of cooking and art/stained glass. Getting together with good friends is a non-negotiable. Teaching families about healthy lifestyles, volunteering at my daughter's school, and serving on our village parks and rec board have helped me maintain my self-awareness as an educated and articulate woman who is more than just a mom to a kid with "needs". Seriously, those "needs" can be omni-present and always will be, unless we/I make a dedicated effort to program self-nurturing into the wiring of my brain. So far.....it has been working.
There is a vitality to life that I am rediscovering.....and I am content with the fact that I may not always be able to share these moments with my kids. I am feeling less and less guilty about spending time "away" for periods of time in order to return feeling refreshed and non-resentful. This is progress.
Monday, October 10, 2011
Introducing Thomas and Lightning
One fish, two fish, red fish, blue fish!
We are proud to introduce two new family members....Thomas (blue) and Lightning (red). Both are betta fish (Bettas are Asian fighting fish, so they need to be kept separate or they will eat each other...hence, the divider.)
Kai got to name these little guys in honor of his birthday. He'll also have the responsibility of feeding them and taking care of them (okay, with our help.) Now if we can just keep them from having little heart attacks...as the cats do find them very amusing.
We are proud to introduce two new family members....Thomas (blue) and Lightning (red). Both are betta fish (Bettas are Asian fighting fish, so they need to be kept separate or they will eat each other...hence, the divider.)
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| Our newest family members |
Monday, October 3, 2011
Birthday "Bittersweetness"
Saturday was Kai's 5th birthday. Birthdays are occasions to celebrate! Here's our Kai-guy celebrating turning 5:
I gotta admit though, that Kai's birthdays are tough on me. Last year when Kai turned 4, I kept thinking..."geez, we've gotten a lot of mileage out of telling people he was 3! I guess I had better gear up for more 'age explanations'." This year isn't much different.
Kai's delays become more and more obvious and pronounced with every birthday. Don't get me wrong....he has made fantastic progress! The fact that he physically and developmentally seems much younger is a reality that we deal with on a daily basis. Explaining Kai's issues to people when they ask his age gets really, really old (as you can imagine, even a well-meaning stranger asking "how old is he?" can lead to a loaded answer which I am frankly just burned out of answering.)
So this weekend was spent having a wonderful time with our good friends, Sandy, Ryan and Leah in Wisconsin Dells. It's amazing how acting silly, beautiful weather and good company can quickly remind you how great life can be! We had a fabulous time hiking and canoing in one of the most beautiful areas of the state. Kai interacted well and we returned home feeling refreshed! :)
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| gettin' silly in the Dells! |
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| Captain Daddy and the kidlings |
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| Jade and the "birthday boy!" |
Sunday, September 18, 2011
Insurance...ugh.
We knew with all of the political schtick going on in education that we would see some changes this year (although rumor has it that worse changes are yet to come next year.) While many consider this year to be a "holding pattern" year to see how the school board will respond to needs of the teachers, given the diminished bargaining power of the teacher's union, we are still affected.
Case-in-point is our insurance. As has come to be expected and most of us know, insurance seems to promise the world while making many services cost-prohibitive. Kai's ABA services were covered from September of last year to this September with our previous insurance. Our new insurer has decided to place cost-prohibitive copays, totaling $560 out-of-pocket per month. Our CLTS waiver (through the county) will pick up a portion of that...but we still are finding that we will be hit with a huge out-of-pocket monthly payment for Kai's ABA therapy. We are in a position to continue for a few months, but are now considering the post-intensive option because we could swing that financially.
Yeah, insurance sucks. Kai has made HUGE gains through ABA and we are thankful for that. Truthfully, even if we do switch to post-intensive therapy (5-10 hours/wk) he will do just fine....largely due to the great early-intervention services under our belts.
Unfortunately so many families are struggling. Those of us with kiddos with special needs are feeling the effects of this economy big-time. I think about our kiddos' futures and pray that services are not eroded to the point where we return to the pre New Deal Era. I know....it seems gloom-doom. I'm just sayin.
Sigh.....
Case-in-point is our insurance. As has come to be expected and most of us know, insurance seems to promise the world while making many services cost-prohibitive. Kai's ABA services were covered from September of last year to this September with our previous insurance. Our new insurer has decided to place cost-prohibitive copays, totaling $560 out-of-pocket per month. Our CLTS waiver (through the county) will pick up a portion of that...but we still are finding that we will be hit with a huge out-of-pocket monthly payment for Kai's ABA therapy. We are in a position to continue for a few months, but are now considering the post-intensive option because we could swing that financially.
Yeah, insurance sucks. Kai has made HUGE gains through ABA and we are thankful for that. Truthfully, even if we do switch to post-intensive therapy (5-10 hours/wk) he will do just fine....largely due to the great early-intervention services under our belts.
Unfortunately so many families are struggling. Those of us with kiddos with special needs are feeling the effects of this economy big-time. I think about our kiddos' futures and pray that services are not eroded to the point where we return to the pre New Deal Era. I know....it seems gloom-doom. I'm just sayin.
Sigh.....
Sunday, September 11, 2011
Happenings...
As summer begins to give way to more autumn-like temps, we're trying to take advantage of being outdoors as much as possible as long as the weather remains nice. Here are the kiddos with Jim Sawgrass, of the Muskogee Creek (Seminole) Indian Tribe, and Little Big Mountain, of the Comanche Tribe. Both of these guys did an educational presentation at Indian Summer Festival on Saturday, which Jade and Kai really enjoyed. Jade was adamant that she and Kai get their picture taken, so here they are!
We took part in a Pow Wow, ate some fry bread, and got a beaded medicine bag and little hair-feather (to look like Pocahantis, of course). Naturally, the day is not complete without kickin' up the heels and doing a little dancing......
The day was a wonderful one!
Tuesday, September 6, 2011
Things that make us Laugh. The Husband.
One of the things that we women like to joke about is how our men can be so "focused" while we are eternally multi-tasking. Sometimes we even tempt ourselves with wishing our men could think more like women....because geez, life would be so much easier if men would be more like us...at least some of the time, wouldn't it?
NOPE.
My dear hubby Scott, bless his heart, tries very hard to be woman-like sometimes. No, he does not don my clothing or flit around the house vacuuming (although he enjoys ironing). But he DOES try very hard to attempt the multi-tasking thing in order to help out around the house. Let me emphasise that he TRIES. Sometimes even his best efforts screw up miserably. Here are a couple of examples (there are more, but these are the most recent, and noteworthy.)
On Friday night as we were flurrying to get the kids ready for bed, Scott decided that he would work on helping with Kai's bedtime routine. Kai usually has a BM after dinner, sometime before getting tucked into bed. Scott thought that we would be efficient by multitasking this evening, thereby helping to take out Kai's speech prosthesis/retainer (aka his rainbow ) while Kai did his night-time duty on the throne. As I came upstairs, I glanced at this awkward situation...and just as I was about to inquire, watched Scott lunge for the retainer (eliciting many exciting eplatives I might add...) as it had flipped out of Kai's mouth, fallen right between Kai's legs, and plopped into the runny, poopy toilet water. I wasn't sure if I was going to hurl or pee my own pants--laughing at my dear hubby, who at this point was shouting "Aw man...gross, yuck (cough cough), ugh!!!" while he made his way to the sink--sludgy hands, poopy retainer and all.
Of course, the kids thought this was all quite interesting. Kai continued to place blame: "Daddy, why you drop my rainbow in the toilet?" While trying to contain myself, I went into mom mode...suggesting that he scub the appliance with antibacterial soap and HOT water first several times, followed by lots of toothpaste. Of course, I commented that all of our family would laugh at this particular "Scott story."
And then the following day.... I was blessed with another opportunity to capitalize on yet another "Scott story." (a "two-fer" weekend!)
Most women would relish the opportunity for their husbands to help tackle their mountains of laundry. Well....I was lucky enough to have my very thoughtful and dedicated hubby fold three loads. Too bad two of those loads were dirty. Yeah, as I was returning all pairs of socks to their drawers, I realized that some of them were still smelling a bit funky (Scott does not do the "sniff test," so he would not know!). It sure would've been nice to have that satisfied feeling of having all the laundry completed. No......I got a whole lot more work and a silly story to tell instead! Thanks honey!
The moral of this post is......... Men-folk are, by nature, simple creatures (that is Scott's term, not mine). Guys can focus on one thing at a time, and when they are able to, they are usually quite successful. Contrary to how some believe, men also DO want to please us women. Unfortunately, they can frequently show their doofus-side in the process. Multitasking? Pleeease.....forget it!
Ah yes, they can also make us laugh. What would life be without a little humor hey?
NOPE.
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| Scott and the kiddos on his 49th Birthday |
On Friday night as we were flurrying to get the kids ready for bed, Scott decided that he would work on helping with Kai's bedtime routine. Kai usually has a BM after dinner, sometime before getting tucked into bed. Scott thought that we would be efficient by multitasking this evening, thereby helping to take out Kai's speech prosthesis/retainer (aka his rainbow ) while Kai did his night-time duty on the throne. As I came upstairs, I glanced at this awkward situation...and just as I was about to inquire, watched Scott lunge for the retainer (eliciting many exciting eplatives I might add...) as it had flipped out of Kai's mouth, fallen right between Kai's legs, and plopped into the runny, poopy toilet water. I wasn't sure if I was going to hurl or pee my own pants--laughing at my dear hubby, who at this point was shouting "Aw man...gross, yuck (cough cough), ugh!!!" while he made his way to the sink--sludgy hands, poopy retainer and all.
Of course, the kids thought this was all quite interesting. Kai continued to place blame: "Daddy, why you drop my rainbow in the toilet?" While trying to contain myself, I went into mom mode...suggesting that he scub the appliance with antibacterial soap and HOT water first several times, followed by lots of toothpaste. Of course, I commented that all of our family would laugh at this particular "Scott story."
And then the following day.... I was blessed with another opportunity to capitalize on yet another "Scott story." (a "two-fer" weekend!)
Most women would relish the opportunity for their husbands to help tackle their mountains of laundry. Well....I was lucky enough to have my very thoughtful and dedicated hubby fold three loads. Too bad two of those loads were dirty. Yeah, as I was returning all pairs of socks to their drawers, I realized that some of them were still smelling a bit funky (Scott does not do the "sniff test," so he would not know!). It sure would've been nice to have that satisfied feeling of having all the laundry completed. No......I got a whole lot more work and a silly story to tell instead! Thanks honey!
The moral of this post is......... Men-folk are, by nature, simple creatures (that is Scott's term, not mine). Guys can focus on one thing at a time, and when they are able to, they are usually quite successful. Contrary to how some believe, men also DO want to please us women. Unfortunately, they can frequently show their doofus-side in the process. Multitasking? Pleeease.....forget it!
Ah yes, they can also make us laugh. What would life be without a little humor hey?
Sunday, August 28, 2011
A different Kind of therapy
It's funny.....having a kiddo with special needs forces us into a mindset where we are constantly looking for what will "work" when determining what helps our children thrive. With Jade, this was a no-brainer. She's a very focused little gal who pretty much sets her own goals (course, perfectionism can become a problem...). With Kai, we have always looked for ways to keep him engaged and focused, as his tendency has typically been to zone out or dissociate (this tendency has improved a lot, but it he can still use zoning out as a default mode.) Kai also came to us with very low muscle tone, and he has been in physical and occupational therapy for several years.
Kai was not walking when he came to us at 28 months.....in fact, he had no idea how his body worked. (It was pretty obvious that he was quite neglected). Here he is at the ol' age of 30 months learning to walk.
Now, before the kidlings, Scott and I enjoyed the thrill of rock climbing. We had given it up once the kids came into our lives, but this year we thought we'd do a family membership at the climbing gym...thinking that kids are naturally like little monkeys. Surprisingly, Kai has turned out to be a natural. Seriously. Look at him go!
Another thing that most folks probably wouldn't know about the climbing "personality type" is that, well, most of us tend to be a little quirky. We're not much into conformity (did I say that?). Then there's the aspect of being outdoors and gritty, and the cool element of being a part of something totally natural. There's kind of a zen-space you naturally get into...where you're completely in the moment, not thinking about anything except the next climbing move. For a kiddo who spent the first 28 months of his life lying in a crib, to climb is amazing.
Scott and I joke about how Kai's seeming weakness (reluctance to put much effort into things, which some would call laziness) plays out to be a strong point in climbing. Kai climbs incredibly efficiently....and tirelessly. (Contrast this to Jade who burns out her arms within the first ten feet and gets frustrated.) Our little dude finds the entire journey up the rock fascinating....every little crack, spider web, bug and new dyno-move. We couldn't be happier that he enjoys it!
Disclaimer: Rock climbing is a very safe activity...when done properly. We've found that the monkey bars are far less safe!
Kai was not walking when he came to us at 28 months.....in fact, he had no idea how his body worked. (It was pretty obvious that he was quite neglected). Here he is at the ol' age of 30 months learning to walk.
Now, before the kidlings, Scott and I enjoyed the thrill of rock climbing. We had given it up once the kids came into our lives, but this year we thought we'd do a family membership at the climbing gym...thinking that kids are naturally like little monkeys. Surprisingly, Kai has turned out to be a natural. Seriously. Look at him go!
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| Look at that undercling, and natural high-step! We have to re-learn this natural technique as grown ups. |
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| ...and a frog step to the next sequence of moves... |
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| showing no hesitation... |
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| great transition over the chimney |
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| yup, really up that high! |
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| Ta-da!!! I did it! |
Scott and I joke about how Kai's seeming weakness (reluctance to put much effort into things, which some would call laziness) plays out to be a strong point in climbing. Kai climbs incredibly efficiently....and tirelessly. (Contrast this to Jade who burns out her arms within the first ten feet and gets frustrated.) Our little dude finds the entire journey up the rock fascinating....every little crack, spider web, bug and new dyno-move. We couldn't be happier that he enjoys it!
Disclaimer: Rock climbing is a very safe activity...when done properly. We've found that the monkey bars are far less safe!
Thursday, August 4, 2011
Behaviorism, Politics and ABA
It is interesting....this human behavior thing. Every day I see and hear trained professionals work with my kiddo on the autism spectrum to help shape more appropriate behaviors. These get recorded and graphed, and there is a real documented science to it.
The concept of reinforcement is used to encourage an increase in desired behaviors, as well as a decrease in undesired ones. The hope is that eventually behaviors will become habitual and reinforcers can be faded, or gradually eliminated once the desired behaviors have been attained.
Of course, all of this flies out the window once we "cave" or give in to behaviors that are inappropriate (For example, giving Kai a treat even though he pinched his sister).
Point is, if we are rewarded for things that we do.....even if they are wrong, the likelihood of the behavior continuing is increased. Treats and praise can serve as reinforcers, but unfortunately fear and approval can also play into the mix. This is where the waters get muddy.
Earlier this week President Obama signed a deal to raise the debt ceiling, and in so doing, extended tax credits to the wealthiest Americans while compromising on sound programs which care for the poor, elderly and disabled. This act has been preceded by other examples of "caving" into the demands of the GOP's political tantrums.
Yes, I liken all of this political schtick to how my kids sometimes try to get their way....make life really uncomfortable for mom (eg. meltdowns, whining, etc.) so that mom gives in just to stop the madness. All parents intrinsically know this game plays out.....until the next time we're in a checkout line and our little one demands a candy bar. The price paid to avert a short-term meltdown has its consequences in long-term expectations.
So, on a national scale, our leader has caved into a giant manipulation scheme, started by a large group of greedy egomaniacs who stamped their feet and whined and complained if they did not get their way.
Yeah, the issue of nation's debt crisis is more critical than our individual family dynamics. Yet I did learn in "family systems theory" in grad school that the patterns people use to manipulate generally follow suit from smaller to larger systems. The sad reality here is that vulnerable people are being hurt by the poor decision-making of our leader and those whom have the power to pave the future for our loved ones--the ones we've vowed to protect.
On a national level, I am disheartened to think that we have a leader who does have the political chutzpah to set appropriate limits for the (pardon my frankness) children in the White House. As a momma bear, I am saddened to know that no matter how strongly I advocate for my kids (and my clients when I was a social worker), our own leaders do not have their backs. The rights of the most vulnerable have just been used as a bargaining chip...
...and yes, (sigh) the political tantrums have worked.
The concept of reinforcement is used to encourage an increase in desired behaviors, as well as a decrease in undesired ones. The hope is that eventually behaviors will become habitual and reinforcers can be faded, or gradually eliminated once the desired behaviors have been attained.
Of course, all of this flies out the window once we "cave" or give in to behaviors that are inappropriate (For example, giving Kai a treat even though he pinched his sister).
Point is, if we are rewarded for things that we do.....even if they are wrong, the likelihood of the behavior continuing is increased. Treats and praise can serve as reinforcers, but unfortunately fear and approval can also play into the mix. This is where the waters get muddy.
Earlier this week President Obama signed a deal to raise the debt ceiling, and in so doing, extended tax credits to the wealthiest Americans while compromising on sound programs which care for the poor, elderly and disabled. This act has been preceded by other examples of "caving" into the demands of the GOP's political tantrums.
Yes, I liken all of this political schtick to how my kids sometimes try to get their way....make life really uncomfortable for mom (eg. meltdowns, whining, etc.) so that mom gives in just to stop the madness. All parents intrinsically know this game plays out.....until the next time we're in a checkout line and our little one demands a candy bar. The price paid to avert a short-term meltdown has its consequences in long-term expectations.
So, on a national scale, our leader has caved into a giant manipulation scheme, started by a large group of greedy egomaniacs who stamped their feet and whined and complained if they did not get their way.
Yeah, the issue of nation's debt crisis is more critical than our individual family dynamics. Yet I did learn in "family systems theory" in grad school that the patterns people use to manipulate generally follow suit from smaller to larger systems. The sad reality here is that vulnerable people are being hurt by the poor decision-making of our leader and those whom have the power to pave the future for our loved ones--the ones we've vowed to protect.
On a national level, I am disheartened to think that we have a leader who does have the political chutzpah to set appropriate limits for the (pardon my frankness) children in the White House. As a momma bear, I am saddened to know that no matter how strongly I advocate for my kids (and my clients when I was a social worker), our own leaders do not have their backs. The rights of the most vulnerable have just been used as a bargaining chip...
...and yes, (sigh) the political tantrums have worked.
Wednesday, July 20, 2011
Parenting a kiddo on the spectrum, and PTSD
Hi again....I'm back at it: the blogging thing.
Truth is, I've been trying to find out how to do this coping thing. Last month, our Lead Therapist with Easter Seals shared with me the recent research of parenting a child on the autism spectrum and the likelihood of developing symptoms that are similar to PTSD (see this article: Autism and PTSD).
Having worked in mental health, this concept resonated with me immediately. Unfortunately, I somehow had the idea that this knowledge would make the experience a little easier. Nope.
Here's the stuff I'm talking about:
Symptoms of PTSD fall into three main categories:
1. Repeated "reliving" of the event, which disturbs day-to-day activity
• Flashback episodes, where the event seems to be happening again and again
• Recurrent distressing memories of the event
• Repeated dreams of the event
• Physical reactions to situations that remind you of the traumatic event
2. Avoidance
• Emotional "numbing," or feeling as though you don’t care about anything
• Feelings of detachment
• Inability to remember important aspects of the trauma
• Lack of interest in normal activities
• Less expression of moods
• Staying away from places, people, or objects that remind you of the event
• Sense of having no future
3. Arousal
• Difficulty concentrating
• Exaggerated response to things that startle you
• Excess awareness (hypervigilance)
• Irritability or outbursts of anger
• Sleeping difficulties
You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
• Agitation, or excitability
• Dizziness
• Fainting
• Feeling your heart beat in your chest (palpitations)
• Paleness
I think that I've been holding out on the "acceptance thing" for a while, as Kai's multiple ediologies have shed different lights on his diagnoses. (I keep thinking that the effects of his orphanage neglect and trauma will gradually subside, which will bring forth improved functioning and behavior.) What has been incredibly difficult is the fact that we are never quite sure what facet of our kiddo we are dealing with. Expectations wax and wane. Always.
I'm tired and numb.
My mother has mentioned repeatedly how much more difficult it has become for me to "let go and enjoy" life. I'm constantly feeling the need to respond to my kiddo or engage my emotional barometer to determine if this time I can "let it go" or not. I regularly prepare for my son's meltdown mode while simultaneously trying to explain his behavior to folks who may not understand (Note: one of the hazards of having studied behavior academically is the ever-present analyzing that we try not to do!)
So...the other stuff on the PTSD list: Avoidance? check. Emotional numbing, detatchment, inability to remember stuff? check. Lack of interest in normal activities, less expression of moods, staying away from places, people, or objects that remind me that my kid is different, Sense of having no future? Check, check, check and check. YIKES! (sigh). Difficulty concentrating? check. Exaggerated startle response? check. Excess awareness, irritability, sleeping difficulties? Check, check, and check. (Note that I'm writing this at 3:00 am.). No dizziness, fainting or paleness, but definitely anxiety-related tightness in the chest at times.
Then throw in political schtick that is making things tough for families with kiddos with special needs.
Being a tough-minded person has always been helpful in getting through the hard times, but this stuff builds up (sigh again...). Awww...Drat.
Truth is, I've been trying to find out how to do this coping thing. Last month, our Lead Therapist with Easter Seals shared with me the recent research of parenting a child on the autism spectrum and the likelihood of developing symptoms that are similar to PTSD (see this article: Autism and PTSD).
Having worked in mental health, this concept resonated with me immediately. Unfortunately, I somehow had the idea that this knowledge would make the experience a little easier. Nope.
Here's the stuff I'm talking about:
Symptoms of PTSD fall into three main categories:
1. Repeated "reliving" of the event, which disturbs day-to-day activity
• Flashback episodes, where the event seems to be happening again and again
• Recurrent distressing memories of the event
• Repeated dreams of the event
• Physical reactions to situations that remind you of the traumatic event
2. Avoidance
• Emotional "numbing," or feeling as though you don’t care about anything
• Feelings of detachment
• Inability to remember important aspects of the trauma
• Lack of interest in normal activities
• Less expression of moods
• Staying away from places, people, or objects that remind you of the event
• Sense of having no future
3. Arousal
• Difficulty concentrating
• Exaggerated response to things that startle you
• Excess awareness (hypervigilance)
• Irritability or outbursts of anger
• Sleeping difficulties
You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
• Agitation, or excitability
• Dizziness
• Fainting
• Feeling your heart beat in your chest (palpitations)
• Paleness
I think that I've been holding out on the "acceptance thing" for a while, as Kai's multiple ediologies have shed different lights on his diagnoses. (I keep thinking that the effects of his orphanage neglect and trauma will gradually subside, which will bring forth improved functioning and behavior.) What has been incredibly difficult is the fact that we are never quite sure what facet of our kiddo we are dealing with. Expectations wax and wane. Always.
I'm tired and numb.
My mother has mentioned repeatedly how much more difficult it has become for me to "let go and enjoy" life. I'm constantly feeling the need to respond to my kiddo or engage my emotional barometer to determine if this time I can "let it go" or not. I regularly prepare for my son's meltdown mode while simultaneously trying to explain his behavior to folks who may not understand (Note: one of the hazards of having studied behavior academically is the ever-present analyzing that we try not to do!)
So...the other stuff on the PTSD list: Avoidance? check. Emotional numbing, detatchment, inability to remember stuff? check. Lack of interest in normal activities, less expression of moods, staying away from places, people, or objects that remind me that my kid is different, Sense of having no future? Check, check, check and check. YIKES! (sigh). Difficulty concentrating? check. Exaggerated startle response? check. Excess awareness, irritability, sleeping difficulties? Check, check, and check. (Note that I'm writing this at 3:00 am.). No dizziness, fainting or paleness, but definitely anxiety-related tightness in the chest at times.
Then throw in political schtick that is making things tough for families with kiddos with special needs.
Being a tough-minded person has always been helpful in getting through the hard times, but this stuff builds up (sigh again...). Awww...Drat.
Tuesday, July 5, 2011
What HAVE we been up to?
It has been quite the busy summer....in a good way. We have done a lot! Scott and I both coach the kids on soccer teams. It has been great for Kai to have the experience of assimilation with other kids (not that he is really interested in developing top-knotch soccer skills!) We've also been camping several times...the kiddos are really developing an appreciation for the outdoors.
Our family walked in the 4th of July Parade on behalf of senatorial candidate Sandy Pasch. We have continued to be politically active here in Wisconsin.
The kids have attended summer school programs, and Kai continues with his ABA therapy in the afternoons. The pool in the backyard continues to be a hit! Kai is under the water more than he is up. We're beginning to think he may grow gills.
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| Kai's ready for a goal! |
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| Coach daddy and his team |
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| Our little camping hoodlums |
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| Our Jade-ster poses with Sandy Pasch, as we prepare for the parade. |
Thursday, June 23, 2011
Speech Prosthetics
....yes, there is such a thing as a prosthesis for speech. Kai has one of these... it is kind of like a retainer with a little extention into the soft palate. He has this little appliance because he is unable to make certain speech sounds due to his soft palate being incapable of raising on its own to make high-pressure vocalizations.
This little thing has been a major pain. Seriously. I have been back and forth to Children's Hospital and the prosthedontist several times within the past few months for "fine tuning" Kai's appliance and for specialized speech therapy. Kai now has metal bands on the backs of his molars to attach the appliance because his teeth were not large enough to keep the retainer held on. He is also not the kind of kid to turn down a fruit snack or peanut butter, which has probably contributed to the loosening of the "fit" of the appliance.
We keep it in all day long, and remove (and clean....ick!) at bed time. We are happy to report that Kai's speech is improving!
This little thing has been a major pain. Seriously. I have been back and forth to Children's Hospital and the prosthedontist several times within the past few months for "fine tuning" Kai's appliance and for specialized speech therapy. Kai now has metal bands on the backs of his molars to attach the appliance because his teeth were not large enough to keep the retainer held on. He is also not the kind of kid to turn down a fruit snack or peanut butter, which has probably contributed to the loosening of the "fit" of the appliance.
We keep it in all day long, and remove (and clean....ick!) at bed time. We are happy to report that Kai's speech is improving!
Thursday, June 16, 2011
Here we are...
On Tuesday of this week, our Wisconsin legislature passed a bill to eliminate collective bargaining for public employee unions in the state of WI. While most folks don't fully understand the impact of this kind of legislation, first of all, simply try to imagine having your basic right-to-vote taken away. Now, I thought I'd capture "in a nutshell" what this could mean for us...with dear hubby working in public education.
Basically, it will be up to the school board...as the teachers will now NOT have any decision-making ability... to make choices which impact the well-being of the school staff. This would likely include:
We have been lucky enough to have some flexibility in Scott's job when the kids have hospitalizations and / or significant medical schtick. My fingers are crossed that the school board will have a heart and continue to take these kinds of things into consideration, now that we are essentially at their mercy. (Luckily Scott is a nice guy and a hard worker who has proven himself...but who knows what the "powers that be" may determine.)
We are bracing for a change in our medical insurance, which has been admittedly wonderful (and the reason behind our deciding to adopt children with special medical needs. I believe our thought was, "While we may not not be blessed to have a lot of money, we do have great medical insurance," and so...made the decision to go ahead with "special needs" adoptions.) The rumor has been that many school districts in the area are changing to a health care system with a high deductible. Sigh.... We'll already be taking an approximate $550 / month hit financially, which does not include medical deductibles. We're anticipating a bone-grafting surgery for Jade within the next couple of years, cleft team assesments, and continued prosthetic speech management and therapies for Kai. (Luckly he qualifies for the autism waiver through the county as of this point, but annual neuropsych assessments [around $2000] would come under insurance.)
Oh yeah...it is my birthday today. Any guesses as to what my wish will be when I blow out my candles?
...and the wish is not just for us. It is for all of the families out there who will suffer under this new legilsation, in many, many states.
(BTW, I share this stuff not to proport continuous negativity or pessimism. I share this stuff as a real family who is being negatively affected by these issues. We are not lazy. We are not freeloaders. Neither are most folks whom this legislation is affecting.)
Basically, it will be up to the school board...as the teachers will now NOT have any decision-making ability... to make choices which impact the well-being of the school staff. This would likely include:
- Determining duties "as assigned" for teaching and non-administrative staff, which could be responsibilities outside of teacher training and/or experience. Basically, if the administration says "Scott, we want you to teach kindergarten, though you've never taught it or were trained to teach it, and you will meet our performance expectations...and your job may be on the line." He can't say "Sorry, I can't."
- Deciding upon a potential wage freeze, which would include no experience step increases, and no lane movement for additional education credits or degrees. Yup...all of that education and seniority goes out the window.
- The potental to set the calendar and the number of contract days, length of work day, in-service days, work days, snow days, etc. Potentially, longer workdays and more workdays for the same or less pay. So much for being home with the family more.
- Determining the language that sets the health benefit standard (e.g. deductibles, drug card, maximum out-of-pocket costs for employee families) Oh yeah...you better bet this one would hit us in our pocketbook, with two medically-intensive children.
- Increasing the employee insurance premium contribution to more than 12%.
- Potentially replacing the judgment of an independent arbitrator on grievances and non-renewal decisions with the collective judgment of the school board.
- Removing the power of the staff from any decision-making power in determining when mandatory meetings are set, the utilization of sick or personal days, or basically anything of significance. (Yes, essentially, there is a "overlord/serf" mentality emerging here...)
- Likely eliminating the current publicly-managed, (nearly) fully-funded retirement benefit and replacing it with lord-knows-what. (Obviously some privately sponsored corporate entity. We can trust our retirement assets to those folks, right? Remember Enron?)
We have been lucky enough to have some flexibility in Scott's job when the kids have hospitalizations and / or significant medical schtick. My fingers are crossed that the school board will have a heart and continue to take these kinds of things into consideration, now that we are essentially at their mercy. (Luckily Scott is a nice guy and a hard worker who has proven himself...but who knows what the "powers that be" may determine.)
We are bracing for a change in our medical insurance, which has been admittedly wonderful (and the reason behind our deciding to adopt children with special medical needs. I believe our thought was, "While we may not not be blessed to have a lot of money, we do have great medical insurance," and so...made the decision to go ahead with "special needs" adoptions.) The rumor has been that many school districts in the area are changing to a health care system with a high deductible. Sigh.... We'll already be taking an approximate $550 / month hit financially, which does not include medical deductibles. We're anticipating a bone-grafting surgery for Jade within the next couple of years, cleft team assesments, and continued prosthetic speech management and therapies for Kai. (Luckly he qualifies for the autism waiver through the county as of this point, but annual neuropsych assessments [around $2000] would come under insurance.)
Oh yeah...it is my birthday today. Any guesses as to what my wish will be when I blow out my candles?
(BTW, I share this stuff not to proport continuous negativity or pessimism. I share this stuff as a real family who is being negatively affected by these issues. We are not lazy. We are not freeloaders. Neither are most folks whom this legislation is affecting.)
Wednesday, June 8, 2011
The Case Against Privitizing Education
Privitizing education is a BAD, BAD idea....especially for kiddos with special needs. Here, Senator Jon Erpenbach explains why.
Here in Wisconsin, we are still living through the nightmare called the "Walker Administration." Unfortunately, this is just the tip of the iceberg.
Here in Wisconsin, we are still living through the nightmare called the "Walker Administration." Unfortunately, this is just the tip of the iceberg.
Monday, June 6, 2011
A "Celebration of Nations" Adoptive Family Weekend
June 3-5 we took part in A Celebration of Nations....Adoptive Family Weekend at Camp Minikani. We were one of twelve families, all of whom have been involved with trans-racial / international adoption.
We had a wonderful time! It was good to see old friends and make some new ones. The weather was perfect! We look forward to returning next year.....
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| "The gang" at Camp Minikani.....adoptive family weekend |
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| Our little bathing hoodlums |
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| equestrian Jade |
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| Kai found a buddy.....a june bug |
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| Roasting marshmellows by the campfire |
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| Jade and her friend, Ivy....these two were inseperable over the weekend! |
Monday, May 30, 2011
Memorial Day Weekend
In Wisconsin, we wait forever for nice weather. This weekend, we indulged as we took in the sunshine.
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| Trying so hard to get that kite to fly! |
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| ...um, we're trying to teach the kiddos to play catch. |
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| This pic pretty much sums op our kiddos' personalities! |
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| ...with a little help from mom... |
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| Daddy had a try too... |
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| ...checking out the geese |
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| ...capping off the day with a margarita, while the kiddos played |
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| Heading home! |
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