This week has been one that has included some big changes for our family.
Our first change has come in response to Colton's birthday check up. He seems to be doing well in many areas, and struggling in others. Our pediatrican set aside extra time to talk with Preston and I about concerns and solutions. It is good to know what we have coming, and also a bit overwhelming.
Our biggest challenges right now are coming with starting Colton on a new medication, and looking at adding another new specialist. So far, Colton has done amazingly well with the new medication. The only side effect that I am significantly noticing is in his eating habits. One thing that can happen is appetite suppresion. I am noticing Colton eating less and having to really cajole him to eat, even if it is his favorite things. It is something we are keeping a close eye on.
We are still in process of getting pre-approval for a new specialist. Even when we do get approval, we are pretty sure it will take several MONTHS to even be seen for the 1st time. We are putting this specialist in place because we are 99.9% sure he will be needed long term for Colton, and esp through teenage years. This new specialist is being referred from our pediatrician. He works with good people and has Colton in mind anytime we go through this process. The new specialist is in Albany,though, which is a 40min+ drive one direction. It could make things tricky by the time we get there, esp if we dont get in to see him until Summer or after. We will just keep working with the schedule, and be thankful every minute for what insurance will continue to cover for us.
The other big change has come in the form of new classes for all the big kids. We surprised them at the beginning of the week by taking them all to check out a local karate school that comes highly recommended. The boys thought it was great, esp as they changed into their new uniforms. The girls went into complete hysterics including gushing tears. They both panicked at having something so new. It was very unexpected for me that they would both react so extremely.
That first class went well, though. We came home and for FHE we talked alot about how class went, and what each of the kids thought, and felt and things that could be gained by continuing. Everyone had something different, but positive, to say. Classes went much better on Wed. The girls worked hard, and got some great exercise. Ceana even got asked to come to the front to demonstrate a new technique. The boys got a good lesson from Master Lyon about discipline and self-discipline and learned about "yes, ma'am, yes sir" - I am thinking I am going to like this a WHOLE lot. Ky was adorable and I wished I had a pict. I am hoping they might let me bring my camera next week so I can at least post some picts. Kels is still too young to start classes. We are working on a solution to allow me to attend classes with the kids and not having her be climbing all over me. She is so busy, and could use classes right now. It will be hard to have to wait another whole year for her to start. Hopefully she will pick up good things from the other kids.
The main thought behind enrolling the kids in classes is that we all, and esp the boys, need discipline. I am definately no "mother of the year" in any respect. Our constant state of medical concerns and ever changing schedules has left us really struggling, for far too long now. I know I have failed the kids because my own health has been bad for so many years. I have not been healthy or strong enough to give them everything they should have had before now. My hope is that as we all learn new things, go to classes together, practice what we learn at home, that we will grow stronger and closer, and be able to find a positive direction for all of us. That together, learning to focus, learning to listen, learning responsibility and taking action vs reacting, then we will get back on track, one day and one way at a time.
They have a great reward/incentive program for the kids. Respect, honor and courtesy are number one priorities. There is also the discipline, of self and in response to others. These are sorely lacking in our home (not for lack of trying or lack of expectations). The results have been quite positive already. By reminding the kids of thinking about "star" behavior, good things have been happening. Having these lessons come from their instructors and Master Lyon seems to be hitting home. Everything we do in class is reinforced at home. When the kids come in to class with slips from home that tell about "star" behavior, the kids earn fabric stars to go on their uniforms. They are praised by their peers, their instructors, and all of the adults in attendance. I have been very impressed that expectations are for all, not just the students. I am just completely impressed with the whole program and how it is run. I think it is going to be a very good thing for our whole family.
We will be learning lots together. We are striving daily to do all that is asked of us, and all that we need to do to meet family and spiritual goals. We are heading in the right direction. It will take time and patience, lots of both probably. I will update again soon. Hoping to have picts of classes soon too. I am also way behind on other posts, hopefully I can get on top of that too. Stay tuned for more to come....
Saturday, March 5, 2011
Tuesday, March 1, 2011
Little Boys
What do you get when you cross a 4yr old jumping off the bed, and the floor coming up to meet him?
You get a little boy coming down the stairs screaming his head off, blood gushing from his mouth, a 3/4" gash in his tongue (where both top teeth almost went through), and a phone call to the on-call nurse hotline center after taking 20+min to get the bleeding to stop.
Thankfully, where he bit down is in the middle vs the end of his tongue. Unfortunately, he will have a nasty gash for quite awhile and probably a lovely little scar. Other than the initial trauma, he seems to be taking things quite well. The rest of us are pretty grossed out at the gash...
We have had yet ANOTHER talk about not jumping off things. Unfortunately, it didnt seem to sink in since a short time after this happened Ceana caught him attempting to jump from the wood stove to the short couch in the library...and Kaeli caught him jumping off the top of the couch in the TV room....
He has split his lip open and bit his tongue enough times you would think the lesson would be learned by now....what is up with little boy genes?
You get a little boy coming down the stairs screaming his head off, blood gushing from his mouth, a 3/4" gash in his tongue (where both top teeth almost went through), and a phone call to the on-call nurse hotline center after taking 20+min to get the bleeding to stop.
Thankfully, where he bit down is in the middle vs the end of his tongue. Unfortunately, he will have a nasty gash for quite awhile and probably a lovely little scar. Other than the initial trauma, he seems to be taking things quite well. The rest of us are pretty grossed out at the gash...
We have had yet ANOTHER talk about not jumping off things. Unfortunately, it didnt seem to sink in since a short time after this happened Ceana caught him attempting to jump from the wood stove to the short couch in the library...and Kaeli caught him jumping off the top of the couch in the TV room....
He has split his lip open and bit his tongue enough times you would think the lesson would be learned by now....what is up with little boy genes?
Thursday, February 17, 2011
SEASONS OF LIFE
I have been doing alot of thinking about seasons this last week. The seasons always bring change - whether in the weather outside, or in our life. No matter what the season, there are always challenges and blessings.
This week has been significant concerning the emerging season of Spring, and the weather outside. February always teases - we have 60 degrees one day, and 27 the next. We have hail, thunder, lightning, heavy winds, black skies streaked with heavy rain all the way to the ground, brilliant blue skies with a sun so dazzling that you have to put on your sunglasses, and exquisite rainbows that take your breath away - all in the same hour! Welcome to Oregon! If you dont like the weather, just wait 5 minutes. Are you a bit confused about what season it really is? Give it a day or two...
It has been interesting to think about all the extreme changes in the weather, and also the extreme changes that often come in our life. I have been thinking specifically about several sisters I know. They all are in different seasons of life, those seasons are not always easy, but they can also bring great blessings.
One sister who is a dear friend is having a special birthday this year. She is in a time of life when all her kids are in school, and her time is her own to do whatever she chooses. Her husband works regular hours, even having 1 whole day off a week. Together they are re-establishing their relationship as sweethearts, time that has not been their own for a very long time. She is greatly blessed in this season to have time to serve, time to play, time to learn new skills, just lots of time. She also has the safety and security of raising their children with her husband by her side always to teach and guide and help every day. These things are true blessings. It is a very joyful season of life.
One sister also has lots of time on her hands. But she is finding it not so joyful. She has recently retired. She has mentioned that having all that time has been very difficult for her. She has always been an extra busy lady, and very involved in her work that focuses on serving and teaching others. Now she is at home, and having a hard time knowing how to fill all those extra hours and make her days feel worthwhile. It is a difficult season of life that will take much time to find the joy again.
Another sister spans several seasons. She has one child who will graduate and leave on a mission next year. She has a middle child who is also in high school. Then she has another child who is many years younger, and will be raised almost as an only child very soon. This sister is gung-ho about the coming changes and has an amazing "bring it on" attitude. She can't wait to see what all the new changes will bring, and is looking forward to the new seasons of life that are ahead of her. Unlike many people, she loves change.
Another sister is finding that life's changes are bringing heartache and challenges. She is in a season of life where she is losing close family members and parents. She is the child trying to care for the parents, and the arrangements, and taking all the responsibilities this time of life brings. It is a challening time with both joy and sadness. The greatest blessing in her life through this difficult time is her amazing husband and the strength that he is to her, and for her. Even in times of trial there is strength and peace because they have each other.
As our seasons of life change, so can our seasons of health also change. Often these seasons are long, difficult, heartbreaking and almost beyond what we can bear. These seasons also can bring great knowledge and blessings that may not be able to come any other way. Oftentimes, those blessings come in the service that others can give.
In the last week alone, we have been made aware of several friends and family members who are going through life threatening illnesses. As I attend the temple tomorrow, I will take each of them with me in my heart and in my prayers. I hope that in the coming weeks, and months, that I might be among those able to serve and bring comfort, friendship and relief.
As I have thought about these many others and their seasons of life, I have also pondered greatly on our own season. Where are we right now? Where have we been in recent weeks and months? Have I taken the time to look for the blessings, and to be grateful to those who have given service to me and to our family?
I know that right now we span many seasons - we have a missy who is now 16, as well as a missy who is almost 3, and kiddos in between. We will celebrate big birthdays this year - and with those birthdays come significant changes to our family's season of life. We fit in all of the circles, and often none of them. We are still in a season of health struggles, and may be there yet a very long time. We are in a season of sacrifice of time, energy, and choices. We often have waded through difficult seasons on our own, with no one to help or to turn to. We have also had to rely heavily on, and put trust in, health caregivers - darling nurses, attentive doctors and helpful medical assistants & specialists. Even during great trials, we have been greatly blessed by their kindness, patience and friendship, and by the wonderful care we have continued to receive.
In the last several weeks, both Colton and I have had pretty difficult appts. I have tried to show gratitude to those who have helped both of us through these extra long days. I have tried to be grateful for, and to find some understanding of, the lessons that have needed to be learned.
I know that I have often not been patient during these difficult times. Doubt and fear have often won over faith and trust. The seasons that have come and stayed have left me disheartened and exhausted. I continue to struggle with frustration, worry and weakness. My brain knows that we have come a long way, my heart doesnt always go along. I seek out blessings, maybe more often than I should, sometimes just needing to be told what to do because I just cant see the way anymore and cannot find the strength or energy to pursue anything constructive. I still give in to stress eating, esp at times when I am feeling most alone. I often cry because I am not strong or faithful. In the moment, and in the midst of the seasons' storms, it is often more than I can handle, and yet I feel guilty that I cannot seem to bear it even when I know that others bear far greater burdens than my own.
Each of us have seasons that are short or long, calm or stormy, where we drift or are carried. Each season brings change, often that change is not what we want, but may be exactly what we need. I am trying to seek out what it is that I need, and that our family needs. I am striving to be more grateful, more patient, more trusting. Just as the weather outside changes with each passing moment, so do the seasons of our life change in the blink of an eye. I am trying to be watchful for the rainbows and the dewdrops, and be patient through the times when the skies are dark and streaked with tears. I try to think of a quote a friend has on her wall - I know I wont get it exactly right, but I think it applies. It goes something like this - "Life is not about waiting out the storms, it is about learning to dance in the rain."
As life's seasons come and go, I am striving to find the courage to dance in the rain, and look for the sparkling skies, even if it only lasts a moment. The seasons of life bring change, and there can be beauty in every season, if we try to actively seek it. I hope that someday I can see it first, instead of only seeing the clouds and rain. I am learning. Someday I will, but for now, in our many seasons, it is a work in progress, and that is ok.
This week has been significant concerning the emerging season of Spring, and the weather outside. February always teases - we have 60 degrees one day, and 27 the next. We have hail, thunder, lightning, heavy winds, black skies streaked with heavy rain all the way to the ground, brilliant blue skies with a sun so dazzling that you have to put on your sunglasses, and exquisite rainbows that take your breath away - all in the same hour! Welcome to Oregon! If you dont like the weather, just wait 5 minutes. Are you a bit confused about what season it really is? Give it a day or two...
It has been interesting to think about all the extreme changes in the weather, and also the extreme changes that often come in our life. I have been thinking specifically about several sisters I know. They all are in different seasons of life, those seasons are not always easy, but they can also bring great blessings.
One sister who is a dear friend is having a special birthday this year. She is in a time of life when all her kids are in school, and her time is her own to do whatever she chooses. Her husband works regular hours, even having 1 whole day off a week. Together they are re-establishing their relationship as sweethearts, time that has not been their own for a very long time. She is greatly blessed in this season to have time to serve, time to play, time to learn new skills, just lots of time. She also has the safety and security of raising their children with her husband by her side always to teach and guide and help every day. These things are true blessings. It is a very joyful season of life.
One sister also has lots of time on her hands. But she is finding it not so joyful. She has recently retired. She has mentioned that having all that time has been very difficult for her. She has always been an extra busy lady, and very involved in her work that focuses on serving and teaching others. Now she is at home, and having a hard time knowing how to fill all those extra hours and make her days feel worthwhile. It is a difficult season of life that will take much time to find the joy again.
Another sister spans several seasons. She has one child who will graduate and leave on a mission next year. She has a middle child who is also in high school. Then she has another child who is many years younger, and will be raised almost as an only child very soon. This sister is gung-ho about the coming changes and has an amazing "bring it on" attitude. She can't wait to see what all the new changes will bring, and is looking forward to the new seasons of life that are ahead of her. Unlike many people, she loves change.
Another sister is finding that life's changes are bringing heartache and challenges. She is in a season of life where she is losing close family members and parents. She is the child trying to care for the parents, and the arrangements, and taking all the responsibilities this time of life brings. It is a challening time with both joy and sadness. The greatest blessing in her life through this difficult time is her amazing husband and the strength that he is to her, and for her. Even in times of trial there is strength and peace because they have each other.
As our seasons of life change, so can our seasons of health also change. Often these seasons are long, difficult, heartbreaking and almost beyond what we can bear. These seasons also can bring great knowledge and blessings that may not be able to come any other way. Oftentimes, those blessings come in the service that others can give.
In the last week alone, we have been made aware of several friends and family members who are going through life threatening illnesses. As I attend the temple tomorrow, I will take each of them with me in my heart and in my prayers. I hope that in the coming weeks, and months, that I might be among those able to serve and bring comfort, friendship and relief.
As I have thought about these many others and their seasons of life, I have also pondered greatly on our own season. Where are we right now? Where have we been in recent weeks and months? Have I taken the time to look for the blessings, and to be grateful to those who have given service to me and to our family?
I know that right now we span many seasons - we have a missy who is now 16, as well as a missy who is almost 3, and kiddos in between. We will celebrate big birthdays this year - and with those birthdays come significant changes to our family's season of life. We fit in all of the circles, and often none of them. We are still in a season of health struggles, and may be there yet a very long time. We are in a season of sacrifice of time, energy, and choices. We often have waded through difficult seasons on our own, with no one to help or to turn to. We have also had to rely heavily on, and put trust in, health caregivers - darling nurses, attentive doctors and helpful medical assistants & specialists. Even during great trials, we have been greatly blessed by their kindness, patience and friendship, and by the wonderful care we have continued to receive.
In the last several weeks, both Colton and I have had pretty difficult appts. I have tried to show gratitude to those who have helped both of us through these extra long days. I have tried to be grateful for, and to find some understanding of, the lessons that have needed to be learned.
I know that I have often not been patient during these difficult times. Doubt and fear have often won over faith and trust. The seasons that have come and stayed have left me disheartened and exhausted. I continue to struggle with frustration, worry and weakness. My brain knows that we have come a long way, my heart doesnt always go along. I seek out blessings, maybe more often than I should, sometimes just needing to be told what to do because I just cant see the way anymore and cannot find the strength or energy to pursue anything constructive. I still give in to stress eating, esp at times when I am feeling most alone. I often cry because I am not strong or faithful. In the moment, and in the midst of the seasons' storms, it is often more than I can handle, and yet I feel guilty that I cannot seem to bear it even when I know that others bear far greater burdens than my own.
Each of us have seasons that are short or long, calm or stormy, where we drift or are carried. Each season brings change, often that change is not what we want, but may be exactly what we need. I am trying to seek out what it is that I need, and that our family needs. I am striving to be more grateful, more patient, more trusting. Just as the weather outside changes with each passing moment, so do the seasons of our life change in the blink of an eye. I am trying to be watchful for the rainbows and the dewdrops, and be patient through the times when the skies are dark and streaked with tears. I try to think of a quote a friend has on her wall - I know I wont get it exactly right, but I think it applies. It goes something like this - "Life is not about waiting out the storms, it is about learning to dance in the rain."
As life's seasons come and go, I am striving to find the courage to dance in the rain, and look for the sparkling skies, even if it only lasts a moment. The seasons of life bring change, and there can be beauty in every season, if we try to actively seek it. I hope that someday I can see it first, instead of only seeing the clouds and rain. I am learning. Someday I will, but for now, in our many seasons, it is a work in progress, and that is ok.
Tuesday, February 15, 2011
Late Birthday Posts - Ceana IV
All the girls got treated to a "pamper" party before the stake dance. Our friend did facials, and the girls did each other's hair and nails. We had quite the grand time with all of those girls in our master suite. They had a blast though and as you can see by the bottom image, all their hard work paid off :) Kaeli & Sabrina arent quite old enough yet to attend the stake dances so Preston treated the girls to a movie/treats "daddy-daughter" night. It was a great night for everyone.
Saturday, February 12, 2011
Iron Infusion # 6
My last infusion appt was yesterday. It was rough going, even with the best nurse in the clinic helping.
I got there early and got both arms heat packed first thing. I have one vein in my left arm that we have hit several times. It came right to the surface, only to disappear when the needle went in. Try #1 was no good. Erin had left my other arm heat packed in the event we missed. She worked my arm over good, just trying to find a spot that would be good to go. She found one, but it went in and collapsed. Try #2 was no good, and Erin was done too. The rule on the floor is that each nurse only gets 2 attempts and then they have to turn it over to someone else.
They heat packed my arms again, and really cranked things up, and called in another nurse from the floor. All the while the sweet nurses from the clinic walking by with expectant looks on their faces, only to have them be as sad as I was that we hadnt gotten a line in yet.
Attempt #3 was made with a larger gauge needle with the hope to get it in to stay. It was very painful and ended up another failure. My other arm had remained in heat packs just in case. Attempt #4 was enough to make me about jump right out of the chair. The nurse had to keep digging a bit too. The vein froze up, but hoping it was actually in, they let it sit for a couple minutes and I tried to relax. Erin came back over to run the line, and the saline taste in my mouth told them it was probably good to go. Erin got everything hooked up, and even though it stung like crazy, it was in, and we went for the rest. All this took about 90 minutes to finally get things in place.
I was hoping to get some work done, but after the line ended up in my right arm, it was out of commission. I tried to read for awhile, but just couldnt concentrate. I have noticed this week that I have been extremely fatigued, sluggish, and that my brain has just been extra fuzzy. I was also freezing yesterday. Erin piled on the heated blankets and got me a pillow and I took a nap for about an hour - I have never done that before. I tried to read a bit, but just couldnt concentrate on anything. By 1230pm I was finally done. Both arms were very sore, and I am sure that they will be for awhile. It will be interesting to see what kind of bruises show up.
Thankfully I will get a little break from getting poked again. Dr Lee's medical assistant was in the clinic and I was able to check in with him about the plan for my labs and next appt. Dr Lee put my lab appt out until March 1 and my appt on March 7. This will give me a good couple of weeks to rest and recoup a bit before the lab draw - which is a big, difficult one. Another blessing came with the names of the best IV people in the lab from the clinic nurses. Brownwynn made a special trip to the lab just for me to make sure I had the names of the best people to help me next month.
It has been a very hard 6 weeks. I am hoping that all that I have been through will strengthen my weaknesses in many ways, and not just physically. I have been very blessed to have the most wonderful nurses and care during my appts. I have also gained a great empathy and understanding of those who have even greater health needs than I do. I wont know until next month what my labs look like. It will be a bit hard to wait, wondering and hoping that what I have been doing is making a difference. Patience is something else that I am trying to learn.
I am very thankful for all the amazing care I have received, but I know that I am also thankful to be done with appts. I will write again about medical etc after my other appts next month.
I got there early and got both arms heat packed first thing. I have one vein in my left arm that we have hit several times. It came right to the surface, only to disappear when the needle went in. Try #1 was no good. Erin had left my other arm heat packed in the event we missed. She worked my arm over good, just trying to find a spot that would be good to go. She found one, but it went in and collapsed. Try #2 was no good, and Erin was done too. The rule on the floor is that each nurse only gets 2 attempts and then they have to turn it over to someone else.
They heat packed my arms again, and really cranked things up, and called in another nurse from the floor. All the while the sweet nurses from the clinic walking by with expectant looks on their faces, only to have them be as sad as I was that we hadnt gotten a line in yet.
Attempt #3 was made with a larger gauge needle with the hope to get it in to stay. It was very painful and ended up another failure. My other arm had remained in heat packs just in case. Attempt #4 was enough to make me about jump right out of the chair. The nurse had to keep digging a bit too. The vein froze up, but hoping it was actually in, they let it sit for a couple minutes and I tried to relax. Erin came back over to run the line, and the saline taste in my mouth told them it was probably good to go. Erin got everything hooked up, and even though it stung like crazy, it was in, and we went for the rest. All this took about 90 minutes to finally get things in place.
I was hoping to get some work done, but after the line ended up in my right arm, it was out of commission. I tried to read for awhile, but just couldnt concentrate. I have noticed this week that I have been extremely fatigued, sluggish, and that my brain has just been extra fuzzy. I was also freezing yesterday. Erin piled on the heated blankets and got me a pillow and I took a nap for about an hour - I have never done that before. I tried to read a bit, but just couldnt concentrate on anything. By 1230pm I was finally done. Both arms were very sore, and I am sure that they will be for awhile. It will be interesting to see what kind of bruises show up.
Thankfully I will get a little break from getting poked again. Dr Lee's medical assistant was in the clinic and I was able to check in with him about the plan for my labs and next appt. Dr Lee put my lab appt out until March 1 and my appt on March 7. This will give me a good couple of weeks to rest and recoup a bit before the lab draw - which is a big, difficult one. Another blessing came with the names of the best IV people in the lab from the clinic nurses. Brownwynn made a special trip to the lab just for me to make sure I had the names of the best people to help me next month.
It has been a very hard 6 weeks. I am hoping that all that I have been through will strengthen my weaknesses in many ways, and not just physically. I have been very blessed to have the most wonderful nurses and care during my appts. I have also gained a great empathy and understanding of those who have even greater health needs than I do. I wont know until next month what my labs look like. It will be a bit hard to wait, wondering and hoping that what I have been doing is making a difference. Patience is something else that I am trying to learn.
I am very thankful for all the amazing care I have received, but I know that I am also thankful to be done with appts. I will write again about medical etc after my other appts next month.
Wednesday, February 9, 2011
Iron Infusion # 4 & #5
I havent gotten a chance to post for awhile. Need to catch up on last couple of appts.
Two weeks ago, we got lucky. The hot packs helped my veins cooperate and the line went in on the first try. The trick was keeping it going while it was in. It started throbbing in my arm and the nurse had to disconnect and re-flush the line - which sent the taste of the saline directly to my mouth. It was very unexpected and not pleasant at all. She ended up adding another bag of saline to the line and running it slower. Once that was done, the rest was pretty uneventful. The one unexpected thing came after I got home - normally I bruise at the IV site itself. This time the bruising occurred where the throbbing had been so bad - totally away from the injection site. It was a fairly long bruise and when I showed it to the nurses last week they were very surprised. I continue to baffle them with all the odd occurrences I seem to have with everything.
I wish I could say that we had as easy of a time last week. Friday was Colton's birthday so we had him come down with me, thinking it would be a fun 2hrs to eat a yummy breakfast and play games. Our day didnt quite go according to plan though.
Preston came and got Colton to go get breakfast, thinking they would get back after my IV was in and going. When they got back, however, one attempt (with lidicaine) had been made and had failed. A 2nd try was made in my wrist, with a painful no go. During all this time, we tried to eat breakfast and start a game. By the 3rd try, though, I think that Preston & Colton had enough of watching me get poked and preston took him out to the waiting area to make some phone calls.
A long wait started again, with BOTH my arms hot packed with wet washcloths and heating pads and an extra nurse from the floor was called in.
When the hot packs came off, finally, one vein came to the surface. The new little nurse did a pretty quick job of things, again using the lidicaine, and got the line in and running clean.
By the time the line was in, we had gotten a surprise phone call from preston's parents that they had flown in early and were coming to get colton to go to lunch. Dad took Colton to lunch and then home, and mom stayed at the clinic with me. Preston went back to work, knowing he would be staying late because of how the morning went.
Things were pretty uneventful for remaining 2 hrs, other than needing and extra saline pouch and it seeming like it was taking forever. Mom & I just chatted and planned for the activities and menu for Colton's big day.
I think I really gave the gals a run for their money - 6hrs, 4 tries, 4 nurses, extra meds, etc made for a VERY long day for all of us.
I think that the nurses on staff, as well as myself, will be glad that this week is our final go of things (at least that is our hope) I have really caused so much concern each week for them, and rattled more than one nurse there in the clinic. I am not looking forward to my appt on Friday at all. Will just try to be prepared to do the best with what I have to take on and hope the rest of the weekend is more quiet.
Just a little PS - I havent written at all about my PT appts that started several weeks ago. My progress has been slow and painful. I was sent home this week with a portable electric stimulus machine to try to keep the pain levels more bearable between appts. I talked with my specialist again today about what the next plan will be. If he does not see considerable improvement in the next few weeks, x-rays, CT's and MRI's may be on the schedule. I am grateful that he is so kind and patient and that the cute gals on his staff are all wonderful. It makes things a lot easier knowing I have help and support when I need it. I will try to keep current on posts about PT etc, esp if I end up needing more in-depth tests run.
Two weeks ago, we got lucky. The hot packs helped my veins cooperate and the line went in on the first try. The trick was keeping it going while it was in. It started throbbing in my arm and the nurse had to disconnect and re-flush the line - which sent the taste of the saline directly to my mouth. It was very unexpected and not pleasant at all. She ended up adding another bag of saline to the line and running it slower. Once that was done, the rest was pretty uneventful. The one unexpected thing came after I got home - normally I bruise at the IV site itself. This time the bruising occurred where the throbbing had been so bad - totally away from the injection site. It was a fairly long bruise and when I showed it to the nurses last week they were very surprised. I continue to baffle them with all the odd occurrences I seem to have with everything.
I wish I could say that we had as easy of a time last week. Friday was Colton's birthday so we had him come down with me, thinking it would be a fun 2hrs to eat a yummy breakfast and play games. Our day didnt quite go according to plan though.
Preston came and got Colton to go get breakfast, thinking they would get back after my IV was in and going. When they got back, however, one attempt (with lidicaine) had been made and had failed. A 2nd try was made in my wrist, with a painful no go. During all this time, we tried to eat breakfast and start a game. By the 3rd try, though, I think that Preston & Colton had enough of watching me get poked and preston took him out to the waiting area to make some phone calls.
A long wait started again, with BOTH my arms hot packed with wet washcloths and heating pads and an extra nurse from the floor was called in.
When the hot packs came off, finally, one vein came to the surface. The new little nurse did a pretty quick job of things, again using the lidicaine, and got the line in and running clean.
By the time the line was in, we had gotten a surprise phone call from preston's parents that they had flown in early and were coming to get colton to go to lunch. Dad took Colton to lunch and then home, and mom stayed at the clinic with me. Preston went back to work, knowing he would be staying late because of how the morning went.
Things were pretty uneventful for remaining 2 hrs, other than needing and extra saline pouch and it seeming like it was taking forever. Mom & I just chatted and planned for the activities and menu for Colton's big day.
I think I really gave the gals a run for their money - 6hrs, 4 tries, 4 nurses, extra meds, etc made for a VERY long day for all of us.
I think that the nurses on staff, as well as myself, will be glad that this week is our final go of things (at least that is our hope) I have really caused so much concern each week for them, and rattled more than one nurse there in the clinic. I am not looking forward to my appt on Friday at all. Will just try to be prepared to do the best with what I have to take on and hope the rest of the weekend is more quiet.
Just a little PS - I havent written at all about my PT appts that started several weeks ago. My progress has been slow and painful. I was sent home this week with a portable electric stimulus machine to try to keep the pain levels more bearable between appts. I talked with my specialist again today about what the next plan will be. If he does not see considerable improvement in the next few weeks, x-rays, CT's and MRI's may be on the schedule. I am grateful that he is so kind and patient and that the cute gals on his staff are all wonderful. It makes things a lot easier knowing I have help and support when I need it. I will try to keep current on posts about PT etc, esp if I end up needing more in-depth tests run.
Monday, January 24, 2011
Emotions In Writing
I know you are not supposed to write anything when you are emotional. This last week has been spent with me in a constant state of emotions - most of them overwhelming. After more very short nights, and more tears than I can count or control, I am going to write anyway.
This is fair warning to just delete this right here if you still even follow this. This is my journal and most likely is TMI. If you choose to read now, most likely you wont again after.
This last week has been a week of loss. Things and people that are very real and tangible. And I admit right off the cuff that I am not handling any of it at all. Our whole lesson in RS about faith instead of fear has gone right out the window....
I am experiencing great loss in being a mother. Being told that I am a bad mother, in not very nice ways, by multiple people over a short period of time is bringing me to my breaking point. I am beginning to belive them. They seem to have more than enough to say to prove their point. I am losing ground. I know that I am failing each of the kids in some way. I am failing in small ways like not having time to read to little people or have the energy to take them to the park. I am failing in big ways like having all of the wonderful birthday plans crumble apart, and not being able to communicate with the big kids at all these days. I am not able to be the mother they need or deserve...
Photography is another area where I have experienced loss. I am ready to concede that my work really isnt good enough to sustain a business. It has never been about excessive profit, but of asking enough to cover expenses most of the time. I truly felt that I had been given a gift to share, to serve. I have tried to give my all, but it isnt enough. I know that if I was not part of a local small business association, that I would not be doing "pro" photography at all. I will not be offering photography services anymore, unless specifically asked. By Summer, I will most likely not be part of the small business association either, and that will close the final door to this pursuit. Maybe I am foolish to think that photography is important in times like these. Maybe I just finally understand and accept that photography work is important and special, just not mine. I will just go back to being "a mom with a camera" and keeping it as a hobby. That is where I started, and I understand now that it is probably where it should have stayed...
I feel in a place where our whole family is losing ground as far as health concerns. Though we have amazing doctors, darling nurses and wonderful care, I am struggling with how much we are taking on right now. We have at least 1 appointment/day, and usually more. I am in the car by myself or with kiddos constantly, often spending hours in travel. I am so very grateful that most of our medical needs have been covered by insurance. Some needs will not be covered by insurance, and so we will continue to not be able to seek out that help until we can save enough. We most likely will need to let those pieces go. We are continuing to add new specialists and have new concerns emerge. We are seeking help and answers, but I have found it to be a long, slow process. It is also exhausting and painful at times. My arms are black and blue, and so sore. My energy levels, esp after long and emotional appts, are never enough to come home and fulfill my responsibilities for the kids or Preston. We continue to be in battle mode to secure Colton's IEP, even though we have a monster stack of reports from specialists. The big kids are struggling with school because we are in daily need of them caring for little people. Even though we have received new answers, there are still many unknowns of where to even start to pursue them. I found out today that Colton is going to be required to do an EKG before we can even begin to pursue looking at the possibility of ADHD meds, and that a behavioral specialist will be added to our plate with an unknown date of when he won't need one.
Because of me, and my insane ability to mis-communicate and make a huge mess of things, Ky's opportunity to attend preschool has been put in jeopardy. It has been a rough transition month, and I was asked to help make some suggestions to see if things might be able to run a little more smoothly. Instead of being helpful, I ended up doing great harm. I have not been able to stop crying now since Sunday afternoon, and even developed a migraine severe enough to have me throwing up in the bathroom during that night. When I think about the whole thing, and all the words that have been said, and the words not said but implied, I start all over again. He loves school, and his teacher so much, but my failure may not allow him to return.
Over the last year, and esp the last few months, I have watched and felt our social circles crumble. This loss has left me, and the girls, feeling very alone. I think as I look back, it has been lots of little things along the way. Far away friends not including us, or making time for us to visit, or even hearing from them this year. Close by friends replacing us, and forgetting about us completely because we are no longer in regular school, or music, or extra activities where they are. We have extended invitations, and made requests for help, and fun, many times, but we have been forgotten, or they have not been accepted, or most of the time even acknowledged. Because of these things, it has brought us to the point of not asking for help, or playtime, or dates, etc. Being rejected or ignored enough times sends a very clear message. It also leaves us knowing that we are very alone, and not able to ask for help, even at times when we are in the most need of it.
I feel at a loss as a teacher. I have been given a class where I am blending old students with new students. Teaching both sets of kiddos present wonderful opportunities, and heartbreaking challenges. I have students that choose to not attend my class, but attend the other 2 hrs around it. In investigating this, I have run into roadblocks and no help from parents. I have a new student that I have already scared away because of one little thing that happened the first day of class. I was not even aware of the concern until I received a call from the student's mother. Even after chatting with her, and feeling like things were ok, this student still has not returned. I have one student that I know nothing about, who does not attend at all. No one seems to be able to help me find the information that would be helpful to seek out this student. I have another student that is struggling, and I just dont know how to reach out at all.
Some weeks I feel like things go ok. Others, like last week, even with studying and trying, I felt like the lesson didnt go anywhere it needed to. I am not sure the kids left with anything helpful. I often struggle with my calling. I know that I have it still because I am supposed to be the student. This is another attempt to help me learn things that I should already know, but have failed to do. When I am the student, how can I also be the teacher? I cannot teach my class, or my own children, things that I do not know myself. This has been esp difficult when it has centered around gospel principles. Even being a member all these years, I often feel I am no better, and have no more knowledge than I did then - except to understand that I SHOULD know it, and to prove continuously how much I am failing to teach them because I dont know or belive that gospel principles apply to me. How can I teach what I do not have a testimony of? It also continues to prove how dire the consequences will be for not knowing and not teaching enough. It is a constant struggle, and I am at a great loss, always wondering if I am doing what is expected by others and esp by Heavenly Father.
I try to give all that I have, but again I have been brought to the point that no matter what I do or say, it is never, and will never be enough. I know many would say, it doesnt have to be. But also knowing that there is nothing to fill in for my inabilities and losses, it just makes things so much harder. Things that I don't understand, and strongly feel that apply to everyone else BUT me. I thought for awhile the fortress walls were coming down, forward progress was being made. This week the walls have gone back up, and progress has been severely reversed. I am not sure about anything anymore, except that I am failing, and not handling loss or finding balance at all.
This is fair warning to just delete this right here if you still even follow this. This is my journal and most likely is TMI. If you choose to read now, most likely you wont again after.
This last week has been a week of loss. Things and people that are very real and tangible. And I admit right off the cuff that I am not handling any of it at all. Our whole lesson in RS about faith instead of fear has gone right out the window....
I am experiencing great loss in being a mother. Being told that I am a bad mother, in not very nice ways, by multiple people over a short period of time is bringing me to my breaking point. I am beginning to belive them. They seem to have more than enough to say to prove their point. I am losing ground. I know that I am failing each of the kids in some way. I am failing in small ways like not having time to read to little people or have the energy to take them to the park. I am failing in big ways like having all of the wonderful birthday plans crumble apart, and not being able to communicate with the big kids at all these days. I am not able to be the mother they need or deserve...
Photography is another area where I have experienced loss. I am ready to concede that my work really isnt good enough to sustain a business. It has never been about excessive profit, but of asking enough to cover expenses most of the time. I truly felt that I had been given a gift to share, to serve. I have tried to give my all, but it isnt enough. I know that if I was not part of a local small business association, that I would not be doing "pro" photography at all. I will not be offering photography services anymore, unless specifically asked. By Summer, I will most likely not be part of the small business association either, and that will close the final door to this pursuit. Maybe I am foolish to think that photography is important in times like these. Maybe I just finally understand and accept that photography work is important and special, just not mine. I will just go back to being "a mom with a camera" and keeping it as a hobby. That is where I started, and I understand now that it is probably where it should have stayed...
I feel in a place where our whole family is losing ground as far as health concerns. Though we have amazing doctors, darling nurses and wonderful care, I am struggling with how much we are taking on right now. We have at least 1 appointment/day, and usually more. I am in the car by myself or with kiddos constantly, often spending hours in travel. I am so very grateful that most of our medical needs have been covered by insurance. Some needs will not be covered by insurance, and so we will continue to not be able to seek out that help until we can save enough. We most likely will need to let those pieces go. We are continuing to add new specialists and have new concerns emerge. We are seeking help and answers, but I have found it to be a long, slow process. It is also exhausting and painful at times. My arms are black and blue, and so sore. My energy levels, esp after long and emotional appts, are never enough to come home and fulfill my responsibilities for the kids or Preston. We continue to be in battle mode to secure Colton's IEP, even though we have a monster stack of reports from specialists. The big kids are struggling with school because we are in daily need of them caring for little people. Even though we have received new answers, there are still many unknowns of where to even start to pursue them. I found out today that Colton is going to be required to do an EKG before we can even begin to pursue looking at the possibility of ADHD meds, and that a behavioral specialist will be added to our plate with an unknown date of when he won't need one.
Because of me, and my insane ability to mis-communicate and make a huge mess of things, Ky's opportunity to attend preschool has been put in jeopardy. It has been a rough transition month, and I was asked to help make some suggestions to see if things might be able to run a little more smoothly. Instead of being helpful, I ended up doing great harm. I have not been able to stop crying now since Sunday afternoon, and even developed a migraine severe enough to have me throwing up in the bathroom during that night. When I think about the whole thing, and all the words that have been said, and the words not said but implied, I start all over again. He loves school, and his teacher so much, but my failure may not allow him to return.
Over the last year, and esp the last few months, I have watched and felt our social circles crumble. This loss has left me, and the girls, feeling very alone. I think as I look back, it has been lots of little things along the way. Far away friends not including us, or making time for us to visit, or even hearing from them this year. Close by friends replacing us, and forgetting about us completely because we are no longer in regular school, or music, or extra activities where they are. We have extended invitations, and made requests for help, and fun, many times, but we have been forgotten, or they have not been accepted, or most of the time even acknowledged. Because of these things, it has brought us to the point of not asking for help, or playtime, or dates, etc. Being rejected or ignored enough times sends a very clear message. It also leaves us knowing that we are very alone, and not able to ask for help, even at times when we are in the most need of it.
I feel at a loss as a teacher. I have been given a class where I am blending old students with new students. Teaching both sets of kiddos present wonderful opportunities, and heartbreaking challenges. I have students that choose to not attend my class, but attend the other 2 hrs around it. In investigating this, I have run into roadblocks and no help from parents. I have a new student that I have already scared away because of one little thing that happened the first day of class. I was not even aware of the concern until I received a call from the student's mother. Even after chatting with her, and feeling like things were ok, this student still has not returned. I have one student that I know nothing about, who does not attend at all. No one seems to be able to help me find the information that would be helpful to seek out this student. I have another student that is struggling, and I just dont know how to reach out at all.
Some weeks I feel like things go ok. Others, like last week, even with studying and trying, I felt like the lesson didnt go anywhere it needed to. I am not sure the kids left with anything helpful. I often struggle with my calling. I know that I have it still because I am supposed to be the student. This is another attempt to help me learn things that I should already know, but have failed to do. When I am the student, how can I also be the teacher? I cannot teach my class, or my own children, things that I do not know myself. This has been esp difficult when it has centered around gospel principles. Even being a member all these years, I often feel I am no better, and have no more knowledge than I did then - except to understand that I SHOULD know it, and to prove continuously how much I am failing to teach them because I dont know or belive that gospel principles apply to me. How can I teach what I do not have a testimony of? It also continues to prove how dire the consequences will be for not knowing and not teaching enough. It is a constant struggle, and I am at a great loss, always wondering if I am doing what is expected by others and esp by Heavenly Father.
I try to give all that I have, but again I have been brought to the point that no matter what I do or say, it is never, and will never be enough. I know many would say, it doesnt have to be. But also knowing that there is nothing to fill in for my inabilities and losses, it just makes things so much harder. Things that I don't understand, and strongly feel that apply to everyone else BUT me. I thought for awhile the fortress walls were coming down, forward progress was being made. This week the walls have gone back up, and progress has been severely reversed. I am not sure about anything anymore, except that I am failing, and not handling loss or finding balance at all.
Saturday, January 22, 2011
Iron Infusion #3
Things went slightly better this week, I think.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
When I got there, I had a new nurse assigned to me. I started off with extra low blood pressure again. Now that I think about it, I didnt get it checked before I left...We also started off with piling on the heated hospital blankets. I woke up freezing to the point of shivering, and couldnt stop at all. Those blankets sure are wonderful, so is hot chocolate which they have on hand for patients. She got me all settled and the IV nurse came over to get things started.
Deb gave it the old college try (extra heat, extra sm needles, extra everything) - and came up empty. After a painful poke in the left arm, and trying to thread the catheder, she tried to flush the line only to make me about jump out of the chair. She pulled the line back out, only to discover the catheder hadn't gone in at all...
Good thing (for me and her) was that she stopped with that try and called Erin to do the rest. Erin tried my mid arm on the right again. I about jumped out of the chair anyway, and even with a cute new nurse trying to distract me with chatter, I was not doing so well. The 2nd try didnt go either.
After applying more heat and letting me rest a bit, Erin started hunting on my right wrist. Not a good sign, esp since my left wrist is still bruised and tender from LAST week. It took everything I had to sit in the chair and not move while she poked and dug to get that dumb needle and line in. She finally got it in, though not without both of us being very distressed. She was visually unnerved when she was done, and I was already exhausted. It took an hour to finally get a line in.
She ran the iron with 2 pints of saline over 2 hrs. She ended up having to brace my arm in one position like last week too, as well as securing the line in several places with tape. I tried to sit really still and just read. It was a really long 2 hrs.
When I was finally done, we went through the fun of getting the line back out-undoing all the tape, flushing the line, etc. Being in my wrist it was extra painful coming back out. It also decided to bleed more too. Erin had to put pressure on it longer than usual before she wrapped it up. I know that both of us were still feeling very unsettled.
Both arms were very sore and it was a challenge to get them into a comfy position to drive home. I ended up being so worn out that I took some IB after I got home and slept for 2 hrs. Also really struggled during the evening. My arms were really shaky and I felt pretty crummy. I was back in bed when I put the little peeps down at 730. It took until after 9pm to finally fall asleep though. I am glad that our Saturday is going to be quiet and I can rest as needed. This appt was just plain hard.
This is appt #3. Half-way done. Not sure that Erin or I are looking forward to the next three....Hoping that my arms will be healed enough to give them somewhere to work next week.
Wednesday, January 19, 2011
School Extremes
It has been interesting to me to watch the 2 extremes that have been going on between our local district and our ORCA "district". Today, we got another WOW from ORCA, that again proves that the 2 districts we are working with are NOT the same.
Our first experience with extremes was before school even started. We knew Colton had new and emerging medical, health and behavioral concerns. He had seen OHSU specialists several times during the Summer, which resulted in the decision to go ahead with surgeries that would impact his education, among other things.
I made phone calls and sent emails to CSD to let them know all of our new concerns, and to request a formal IEP Mtng to get all of his new stuff in place for this school year. None of my calls or messages were returned. I also made phone calls to our host ORCA school, and talked directly to the assistant principle - multiple times. I was able to coordinate and confirm that Colton would have the same teacher he did last year, that the curriculum would be modified to meet his needs, and we were offfered a special medical laptop just for Colton so we could do lessons during our hospital stays. In the midst of our medical challenges, I received phone calls and webmails from Colton's teacher, the assistant principle, and his ORCA special needs director all checking to see how we were doing and if there was anything more that we needed. We still heard nothing from CSD.
Another extreme happened after school started. We again repeated our request for a formal IEP mtng - which CSD agreed to do with us at the end of last year. My requests were not heeded in any way. I finally went directly to the CSD special needs director in our district to let her know what was going on and what we needed. Still nothing. Finally, after phone calls and webmails to our ORCA team, and communication from them, an IEP mtng was grudgingly scheduled. During that meeting, however, the special needs director did not attend, and the person in her place and those present pretty much dismissed the HUGE stack of medical and behavioral reports sitting in front of them. The PROOF that what we were requesting for Colton (that his IEP show in written form the medical needs for extra services) was valid. Their side has been that if they are not seeing him or providing services, then they arent going to comply, that they want their OWN reports.
During this waiting game, we spent our own time and money seeking several other specialists to gather more needed documentation to plead our case. The CSD speech and pysch team came to "observe" Colton for their own records. Even after many protests and attempts to request a real observation (1/2-whole day) they came and left in 90min. They observed part of our school routine, and none of the fall-out that occurred after they left because of the disruption to our morning. They weren't willing to give the time or efforts to see the things that we were trying to explain. They requested more paper reports from me and others Colton interracts with. The same set of papers we had filled out 2x already for outside specialists.
ORCA, during this same waiting period, continued with constant communication about where Colton was, what specialists we were seeing, and being completely involved as much as possible.
***Just as a side note, the squeaky wheel does get the grease - Our efforts and requests to CSD seem to be paying off now that we have a confirmed diagnosis from THREE sources to confirm Colton's ADHD, and a report from a new speech specialist concurring with OHSU team. We are hoping to take these reports and get a newly drafted IEP with all medical documentation by the end of this month.
So, back to our news of today. Here is yet another extreme. Many people know how involved we have been in the local school district. Preston has officially applied for the interim position on the board. After the 1st official vote by the board it came to a dead end and a tied vote. Between the 1st and 2nd vote, we were the subject of nasty rumors and very unkind words from board and community members. At the time of the 2nd vote, again the board hit a wall - resulting again in dead-lock and including Preston losing a vote that had been given the month before. At that time, the board chose to not make any decions and will leave the slot empty until official elections in May. Not only did they not resolve the immediate concern, they have left one area of our city not represented at all, and have put themselves in a position of constant deadlock and not being able to move forward with anything critical because there will never be a majority vote. It has also put extra pressure and stress on many of the current board members. A constant concern is that those with strongest voices will continue to pressure those with not strong voices, and a lot of ill will continue to come from the board as things are still not resolved or even brought to where they should be addressed.
So now flip over to ORCA. Preston forwarded a letter to me that he received from the ORCA parent association/school board. He has been very involved in the parent association and everything involved with ORCA since we enrolled the kids. Really it is no surprise that he received this letter. In it was a personal, official invitation to fill an open slot on the board. The letter outlined what expectations for the position would be including, "...staying informed and doing our best to particiapte and encourage others to become involved whether that be listening or giving testimony, notifiying legislators about current legislation, or visiting the Oregon Department of Education. We make goals of what we'd like to see accomplished within ORCAPA. We work with the public relations liasion for ORCA, as well as the PR from National Connections Academy. We help provide direction for the yahoo group as well."
Her final comments were these: "Please consider this position: you are such an asset. You have a beautiful calm nature about you and you have the gift to make the complex, simple."
Pretty impressive to me, considering that most of the people that Preston has had contact with so far in ORCA communications has been through email or phone calls only. He has worked hard, and others are seeing that. It is a really great opportunity for him to serve and not only advocate for our family, but for all the ORCA families in Oregon and contribute to things at the national level...It is also an extact opposite of what has happened within CSD.
We are waiting to see what other information can be gathered before he makes a final decision. It should make for some interesting posts in the future.
I am sure there are other things I could, and probably will write about. Just has been an interesting experience being in the middle of both schools and districts.
Our first experience with extremes was before school even started. We knew Colton had new and emerging medical, health and behavioral concerns. He had seen OHSU specialists several times during the Summer, which resulted in the decision to go ahead with surgeries that would impact his education, among other things.
I made phone calls and sent emails to CSD to let them know all of our new concerns, and to request a formal IEP Mtng to get all of his new stuff in place for this school year. None of my calls or messages were returned. I also made phone calls to our host ORCA school, and talked directly to the assistant principle - multiple times. I was able to coordinate and confirm that Colton would have the same teacher he did last year, that the curriculum would be modified to meet his needs, and we were offfered a special medical laptop just for Colton so we could do lessons during our hospital stays. In the midst of our medical challenges, I received phone calls and webmails from Colton's teacher, the assistant principle, and his ORCA special needs director all checking to see how we were doing and if there was anything more that we needed. We still heard nothing from CSD.
Another extreme happened after school started. We again repeated our request for a formal IEP mtng - which CSD agreed to do with us at the end of last year. My requests were not heeded in any way. I finally went directly to the CSD special needs director in our district to let her know what was going on and what we needed. Still nothing. Finally, after phone calls and webmails to our ORCA team, and communication from them, an IEP mtng was grudgingly scheduled. During that meeting, however, the special needs director did not attend, and the person in her place and those present pretty much dismissed the HUGE stack of medical and behavioral reports sitting in front of them. The PROOF that what we were requesting for Colton (that his IEP show in written form the medical needs for extra services) was valid. Their side has been that if they are not seeing him or providing services, then they arent going to comply, that they want their OWN reports.
During this waiting game, we spent our own time and money seeking several other specialists to gather more needed documentation to plead our case. The CSD speech and pysch team came to "observe" Colton for their own records. Even after many protests and attempts to request a real observation (1/2-whole day) they came and left in 90min. They observed part of our school routine, and none of the fall-out that occurred after they left because of the disruption to our morning. They weren't willing to give the time or efforts to see the things that we were trying to explain. They requested more paper reports from me and others Colton interracts with. The same set of papers we had filled out 2x already for outside specialists.
ORCA, during this same waiting period, continued with constant communication about where Colton was, what specialists we were seeing, and being completely involved as much as possible.
***Just as a side note, the squeaky wheel does get the grease - Our efforts and requests to CSD seem to be paying off now that we have a confirmed diagnosis from THREE sources to confirm Colton's ADHD, and a report from a new speech specialist concurring with OHSU team. We are hoping to take these reports and get a newly drafted IEP with all medical documentation by the end of this month.
So, back to our news of today. Here is yet another extreme. Many people know how involved we have been in the local school district. Preston has officially applied for the interim position on the board. After the 1st official vote by the board it came to a dead end and a tied vote. Between the 1st and 2nd vote, we were the subject of nasty rumors and very unkind words from board and community members. At the time of the 2nd vote, again the board hit a wall - resulting again in dead-lock and including Preston losing a vote that had been given the month before. At that time, the board chose to not make any decions and will leave the slot empty until official elections in May. Not only did they not resolve the immediate concern, they have left one area of our city not represented at all, and have put themselves in a position of constant deadlock and not being able to move forward with anything critical because there will never be a majority vote. It has also put extra pressure and stress on many of the current board members. A constant concern is that those with strongest voices will continue to pressure those with not strong voices, and a lot of ill will continue to come from the board as things are still not resolved or even brought to where they should be addressed.
So now flip over to ORCA. Preston forwarded a letter to me that he received from the ORCA parent association/school board. He has been very involved in the parent association and everything involved with ORCA since we enrolled the kids. Really it is no surprise that he received this letter. In it was a personal, official invitation to fill an open slot on the board. The letter outlined what expectations for the position would be including, "...staying informed and doing our best to particiapte and encourage others to become involved whether that be listening or giving testimony, notifiying legislators about current legislation, or visiting the Oregon Department of Education. We make goals of what we'd like to see accomplished within ORCAPA. We work with the public relations liasion for ORCA, as well as the PR from National Connections Academy. We help provide direction for the yahoo group as well."
Her final comments were these: "Please consider this position: you are such an asset. You have a beautiful calm nature about you and you have the gift to make the complex, simple."
Pretty impressive to me, considering that most of the people that Preston has had contact with so far in ORCA communications has been through email or phone calls only. He has worked hard, and others are seeing that. It is a really great opportunity for him to serve and not only advocate for our family, but for all the ORCA families in Oregon and contribute to things at the national level...It is also an extact opposite of what has happened within CSD.
We are waiting to see what other information can be gathered before he makes a final decision. It should make for some interesting posts in the future.
I am sure there are other things I could, and probably will write about. Just has been an interesting experience being in the middle of both schools and districts.
Friday, January 14, 2011
Iron Infusion #2
So...today didnt go so well.
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
My first job of the day was to check my blood pressure. It was not good to see that it was even lower than when I left last week. My main care nurse was concerned, but said we would just keep an eye on things. The big job of the day was to get the IV in, that ended up being a lot harder than any of us would have guessed....
My nurse really struggled with finding a vein that even looked like it was going to cooperate. We pulled out all the tricks - heat pad, hot wet rags, squeezing a foam ball, slapping the surface skin, etc. We did it all, to no avail whatsoever...
The first attempt in my forearm was a total no-go. The 2nd attempt in my wrist got the needle and catheder in, but the vein was so small the nurse couldnt thread it in completely. The third attempt was in the other arm. By this time, I was in tears because the one in my wrist was pretty painful, and the nurse was done trying. The fourth attempt, done by the nurse I had last week, finally went in on my right forearm. Four attempts=1 1/2 hrs.
All this time, Preston sat quietly on the sidelines, not sure how he felt about everything. I had asked him to come sit with me and we could have our "date" (play a game and have a fun bfast together), thinking that by the time he came the IV would be in and we would be good to go. Things didnt quite go according to plan.
We started a game of Cribbage - which neither of us knew how to play before today (not sure we really do yet though) but my wrist was in alot of pain where attempt #2 was made. The nurse brought me some IB, and we tried a heating pad which wasnt working so well. I just kept it tucked under my chin and braced against my body to try to not move it or bump it at all. Shortly after they got the IV going it was stinging alot. I tried not to fuss, but the stinging got more intense and I noticed it was slowly creeping up my arm. I also realized that I had started with a headache like last week. By the time the pain was at my elbow, I was about in tears and asked the nurse to come over and see what else we could do. My main care nurse stopped all the IV's and got a saline syringe to see if she could flush it a bit. When she pushed the saline through I about jumped out of the recliner, and the tears came again, it was not good. She was concerned that the vein was too stressed and recommended that I just be done and come back another time to try again. I knew that just wasnt an option, so without spilling our whole schedule in her lap, we discussed all the options and decided that adding a 2nd saline IV and slowing the infusion down to go in over a 2hr (vs the normal 1 hr) window would be our last try at things.
When I was finally re-settled, I sent Preston out to call the kids and let them know I was going to be a lot later than planned. As I waited for him to return, I just kept looking at the clock - knowing I was going to still be another hour minimum. We decided to go ahead and let Preston go back to work so he didnt miss any more hours. I think we were both disappointed that things didnt go so good, I know I was and I had a hard time not crying after he left. Having him come for a bit was a good idea last night, just didnt go so good today. We will have to see if we decide to try to have him come next week...
After he left, I just sat and read for that last hour. The nurses came and checked on me alot, but I was doing much better, and though I could feel things in my arm, it was tolerable. We did check my blood pressure again before I left, and both of us were pleased to see that it had jumped back up to normal #'s.
There are still things to do today, but I think with the way I feel, I will forgo getting into battle mode with the kids over school stuff or worrying about house etc, and just try to lay low. I will be home with little people all day tomorrow, we can work on more school stuff then. Hopefully, the rest of the day will be uneventful...
Subscribe to:
Posts (Atom)