It has been a really crazy week here. We have had lots of challenges and some new info to update for me and Colton.
The beginning of the week started our family with the cold/flu thing that is currently circulating in our area. Caiden and Kels have both struggled with high fevers and Caiden has been very sick the whole week. Kaeli, Preston & I have also had varying symtoms, though not as extreme as the younger kiddos. Preston stocked up on all the med helps we could and added them back into storage. We are keeping our hopes up, that as school starts again next week, that it might miss the rest of the kids.
Yesterday, Colton & I both had extra appointments to see specialists. He did pretty well at OT and made some really good progress. Jeannie wanted to see if he could jump rope to practice strengthening some core and fine motor muscles. At first he didnt quite get it, but then it clicked. His face was beaming (and so was I) as he jumped 30x in a row! He has never been able to jump rope before. It was a great accomplishment for him. The extra large motor activity really helped him focus on his handwriting too. He also practiced tying his shoes again. This is a very difficult small muscle activity for him, and he got frustrated quickly. Jeanie is so patient with him though, and her encouragement and talking in funny voices (arnold swartz/rocky balboa/etc) kept the stress from gaining and he was able to get both shoes tied. This is an on-going trial for him, but he is making good progress one baby step at a time.
We will be in holding pattern now for awhile though. Jeanie has to send in a progress report to Dr Shawn and TRICARE to keep insurance coverage updated. I am hoping that things will go more smoothly this time, and we wont have to wait too long to get him back on her schedule. Last year we missed 2 whole months, and then some, because insurance stuff didnt fall into place well. He is doing so well, I am hoping we wont lose ground while we are waiting.
On a side note for Colton, I had a phone call from Dr Shawn yesterday too. He had finally been in contact with the psych specialist Preston & I visited with several weeks ago. We had a very long conversation about what she is recommending and what future concerns may be. One good thing will be that she is willing to finish Colton's evaluations and between her and Dr Shawn we will most likely confirm a diagnosis for ADHD. This will be one tiny piece we are working through right now, but it may be enough to take to the school to update his IEP again and get some more medical stuff attached to it. Things that should have been there since Sept...I am hoping that we can also get an outside speech eval done as well, so that we will also have that piece to take to the school. It has been very challenging and frustrating to have reports from specialists confirming what Colton needs, only to have the school IEP team totally dismiss all his reports. We have known for months that Colton needed updates and that there will be more in the future, and to have the school almost retain total power over his IEP and what they will/wont do. There is much that should be on his IEP that isnt yet, and I fear with our continued battle that we may not see it finally there until it is too late for this year to do any good. Thankfully, we have Dr Shawn and others who are willing to help us fight for what is best for Colton. We will be talking more with the new psych specialist and with Dr Shawn about seeking out a medical "case manager" that would help us better coordinate and seek out the appointments and help Colton needs, even with the school district. It is just brainstorming for now, but hopefully by Feb we may have some more pieces and people in place to help.
I also had another appt yesterday. I saw my sleep specialists and we talked for quite awhile about all the options out there. He still feels that we have not exhausted all the non-meds possibilities. He is referring me to a cognitive-behavioral sleep specialty team. They will help me be able to know/physically do things to help me get some kind of sleep pattern back in place. It will be more appts for me to travel to Corvallis, but hopefully will be successful. The other plan, for now, is for me to aid that process a bit until I can get those appointments going. I came home sporting some new "shop" glasses with amber colored lenses and some dissolvable melatonin tablets. The glasses help to block out all of the blue light waves, simulating late afternoon/evening light. Trying to tell my brain it is the end of the day and time to get ready to sleep. The melatonin, though in almost miniscule amounts, helps my brain to try to also go into sleep mode by helping what my body is not able to do for itself. I have to have both, starting at 5pm every night. Last night, I was zonked on the couch with Kels by 8pm. Not sure if it was the new stuff, not sleeping hardly at all during this whole last week, or a combo of both. The bummer was that I woke up long enough to have Preston put me to bed, and then lay there for IDK how long before I fell back asleep. I slept off and on for awhile, but finally was laying there with a headache long enough that I just got up.
I am going to try to keep some more consistent records to be able to take back to next dr appointments. Will just keep trying to move forward and try to be as patient as I can. Even though it seems like we are just spinning our wheels, we are knocking out major things and finding answers, even if they are the right ones yet. Maybe this year will help Colton & I both find more answers to help us regain some health and learn new things that will help us both better meet the challenges that are ahead. We both have lots of good people to help us, and that is one thing that can make all the difference.
Friday, December 31, 2010
Monday, December 27, 2010
Baxter Family Christmas Eve
The week of Christmas was filled with lots of cooking and baking, hoping to give us just lots of yummy leftovers to enjoy for the weekend. We had just a couple of things left to work on Christmas Eve day - deviled eggs and cinnamon rolls. Both ended up being big meal mishaps, with a mostly happy ending.
The 1st mishap was with the eggs. I had boiled 2 dozen eggs several days ahead, so they would just be ready to work with. I had put them in the outside freezer, knowing I would need all the extra room in both fridges. I sent Ceana out to get the eggs, only to discover that they were all frozen solid, rock hard. Little people had twiddled with the dial again. I tried to open a couple, only to find them completely encased in ice. We tried to let them sit and thaw, but most ended up hard and rubbery. I did end up salvaging about 8 out of the 24. I was just sick that they had gone to waste, and that we didnt have any time to make more before our dinner guests arrived. Will just be on the plan for New Year's Eve instead, and I will remember to NOT put them in the outside freezer. It does make me a little worried about the other 5 dozen eggs out there, though, I am hoping that by turning the fridge temp back down, they will be ok...guess we will see...
The 2nd mishap was with the cinnamon rolls. I had Kaeli make the yummy bread dough in the morning, so it would be ready to work with. We found out though, that our favorite bread dough is not sturdy or stiff enough for cinnamon rolls. The dough just oozed all over the countertop...I tried to cut some rolls, and got them into 1 pan. The rest of that dough got turned into cinnamon bread and baked in loaves. The other batch of dough got turned into 2 monster cinnamon braids. This mishap ended up having a happy ending, and Kaeli and I had fun "frosting" them with colored icing. Most of the treats we made were given away, and the rest is going into the freezer for another time. This is a pict Kaeli took of the one batch of cinnamon rolls. It is hard to tell from this pict, but they turned out monster huge.
We have started many new traditions for our own little family. One of them started many long years ago - opening 1 present on Christmas Eve which was always a new pair of PJ's. Our tradition has evolved in not only the new PJ's, but a treasure hunt along with it. The kids each take turns hiding a pair of PJ's and then they lead out with "hot or cold" as the other person looks through the house to find them. It is a riot watching the kids follow each other in a long line as you hear lots of giggles and "HOT! or COLD!" The kids get more creative every year, and the big kids have learned to be very sneaky. The primo spot this year was Preston finding his PJ's in the outside freezer -courtesy of Kaeli, who was very pleased with herself. The longest searching went on when Ceana was hunting out her PJ's - she found the "hot" spot, but Caiden had hidden them a little too well - under the huge stack of quilts and blankets in the upstairs linen closet. He had a good laugh at his job well done.
The 1st mishap was with the eggs. I had boiled 2 dozen eggs several days ahead, so they would just be ready to work with. I had put them in the outside freezer, knowing I would need all the extra room in both fridges. I sent Ceana out to get the eggs, only to discover that they were all frozen solid, rock hard. Little people had twiddled with the dial again. I tried to open a couple, only to find them completely encased in ice. We tried to let them sit and thaw, but most ended up hard and rubbery. I did end up salvaging about 8 out of the 24. I was just sick that they had gone to waste, and that we didnt have any time to make more before our dinner guests arrived. Will just be on the plan for New Year's Eve instead, and I will remember to NOT put them in the outside freezer. It does make me a little worried about the other 5 dozen eggs out there, though, I am hoping that by turning the fridge temp back down, they will be ok...guess we will see...
The 2nd mishap was with the cinnamon rolls. I had Kaeli make the yummy bread dough in the morning, so it would be ready to work with. We found out though, that our favorite bread dough is not sturdy or stiff enough for cinnamon rolls. The dough just oozed all over the countertop...I tried to cut some rolls, and got them into 1 pan. The rest of that dough got turned into cinnamon bread and baked in loaves. The other batch of dough got turned into 2 monster cinnamon braids. This mishap ended up having a happy ending, and Kaeli and I had fun "frosting" them with colored icing. Most of the treats we made were given away, and the rest is going into the freezer for another time. This is a pict Kaeli took of the one batch of cinnamon rolls. It is hard to tell from this pict, but they turned out monster huge.
We have started many new traditions for our own little family. One of them started many long years ago - opening 1 present on Christmas Eve which was always a new pair of PJ's. Our tradition has evolved in not only the new PJ's, but a treasure hunt along with it. The kids each take turns hiding a pair of PJ's and then they lead out with "hot or cold" as the other person looks through the house to find them. It is a riot watching the kids follow each other in a long line as you hear lots of giggles and "HOT! or COLD!" The kids get more creative every year, and the big kids have learned to be very sneaky. The primo spot this year was Preston finding his PJ's in the outside freezer -courtesy of Kaeli, who was very pleased with herself. The longest searching went on when Ceana was hunting out her PJ's - she found the "hot" spot, but Caiden had hidden them a little too well - under the huge stack of quilts and blankets in the upstairs linen closet. He had a good laugh at his job well done.Normally, the kids would be taken on a secret shopping trip to pick out PJ's for each other. This year, since we knew we were going to be at special places during vacation, the PJ shopping went on at some of the fun places we visited. Kels and Ky got to pick out their PJ's at Sea World, and they were both VERY excited to have Shamu all over them. It was extra fun since they are both so little, that even though they had both picked out what they wanted, they had completely forgotten about them, so it was a surprise all over again. I am extra happy that is where we had picked them out since Sea World has been one of the really big things they both remember from vacation.
I was getting a bit worried that we were down to 2 days of outings on vacation and still hadnt found anything in the right sizes for the boys. I got the chance to do some hunting when we were at California Adventure, and found the perfect store. They didnt have matching PJ sets in the boys' sizes, but they did have T-shirts and sweat pants. I was able to pick out fun Mickey shirts for both of them. The pants I chose (just from guessing) are a bit big for them right now, but at least that assures me that they wont grow out of them anytime soon. They were both very happy with what I had chosen, and that is what really mattered most.
The girls got to pick out their PJ's at San Diego Zoo. Again, it was tricky to find something in the right sizes, and I was thankful that they had fun stuff in women's sizes for the girls. They are made of soft, fuzzy flannel, and should work well for both of them. I had a hard time getting their pict since the dogs both insisted on being in the pict too.
I was so happy to get one good pict of all the kids in their PJ's. Trying to get picts of the 6 of them usually results in someone not looking or making faces or such. This is just a fun one of everyone.
Baxter Family Christmas I
Christmas AM was quiet and simple. Since we had our big "to-do" with vacation last month, Christmas was stockings with little surprises, books, and a few extras provided by extended family.
The kids decided that 630am was as long as they were going to wait, and that is when we got pounced on. The kids did a great job taking turns with presents and being excited and thankful to each other for gifts received.
Since little sleep was had during the night, just about everyone crashed for morning naps. After naps, we had a yummy brunch of our traditional dessert waffles.
The afternoon was filled with a surprise visit from Grandma and Papa, more extra fun gifts, the kids performing their recital pieces, group singing around the piano, books, games, and of course yummy food.
The evening was dinner and crazy games and fun at Kari's. The cousins dont get to see each other very often, so it was a blast to see them running around all over in a "marshmallow war" and trying to pelt each other with marshmallows shot through homemade blowguns. The dinner and all the desserts were amazing, and the crazy games gave us the perfect ideas for Ceana's upcoming birthday party. All in all, I think a fun time was had by everyone.
The boys especially enjoyed all the little goodies in their stockings. The Hot Wheels cars were an extra plus for all of them.
Kaeli and Kels reading her new Tinkerbell "Look & Find" book. Kaeli has already finished one thick book from her aunt, and is tearing through the others. Good to know they are so good she isnt putting them down until they are finished.
The big hits of the day were all of the fun books the kids received. It was fun to see them so happy with such simple gifts. All of the kids LOVE books, and to read, so it really was the perfect gift. Ceana is smiling at her new addition to the Eragon series - we were missing the middle one - it will be fun for us to re-read them all together.
Here is Ky opening his first favorite book. I was watching him closely as he specifically opened this gift, hoping for a happy boy. 
The kids decided that 630am was as long as they were going to wait, and that is when we got pounced on. The kids did a great job taking turns with presents and being excited and thankful to each other for gifts received.
Since little sleep was had during the night, just about everyone crashed for morning naps. After naps, we had a yummy brunch of our traditional dessert waffles.
The afternoon was filled with a surprise visit from Grandma and Papa, more extra fun gifts, the kids performing their recital pieces, group singing around the piano, books, games, and of course yummy food.
The evening was dinner and crazy games and fun at Kari's. The cousins dont get to see each other very often, so it was a blast to see them running around all over in a "marshmallow war" and trying to pelt each other with marshmallows shot through homemade blowguns. The dinner and all the desserts were amazing, and the crazy games gave us the perfect ideas for Ceana's upcoming birthday party. All in all, I think a fun time was had by everyone.
The boys especially enjoyed all the little goodies in their stockings. The Hot Wheels cars were an extra plus for all of them.
Kaeli and Kels reading her new Tinkerbell "Look & Find" book. Kaeli has already finished one thick book from her aunt, and is tearing through the others. Good to know they are so good she isnt putting them down until they are finished.
The big hits of the day were all of the fun books the kids received. It was fun to see them so happy with such simple gifts. All of the kids LOVE books, and to read, so it really was the perfect gift. Ceana is smiling at her new addition to the Eragon series - we were missing the middle one - it will be fun for us to re-read them all together.
Here is Ky opening his first favorite book. I was watching him closely as he specifically opened this gift, hoping for a happy boy. 
Baxter Family Christmas II
I was ecstatic at the reaction Ky had to his new book. I was so glad that I was able to find it for him. A couple of months ago, his primary teacher (who is also his preschool teacher) gave each of the kids a little stuffed, yellow duckling, when she knew she wasnt going to be their teacher anymore. She read this book and sang with the kids every week. When Ky got his little duckling he was so excited, and it has resided on his bed (only his extra special things are there) ever since. I realized then that it was extra special to him, and when I found out about the book, I knew it would be the perfect thing for Christmas - and I was happy to be right.
Here is my happy boy with his book. He was so excited that we just had to take it to church with us. His primary teacher was there this week with her husband since both were speaking in our ward. When he found out she was there, he grabbed his book and ran out to see her in the foyer. It was fun to watch him show off his new book and for them to share that moment together. She has been so special to Ky and we are so blessed that even though they have moved that she will still be his preschool teacher. Ky has done so well with her, it is wonderful to me that he has made such a special bond with her at church and for school.
A big hit for Ky this year was a musical book from my grandmother. It had disney characters on it, and plays tons of Christmas songs. Ky sang and danced to that thing like there was no tomorrow, it was pretty funny. It was fun to see him esp excited about things this year - we got some great reactions and it was great to see him enjoy everything so much.
Photo courtesy of Kaeli :)
I got a couple of extra fun surprises this year. Preston bought me a photography vest - a coolio thing with tons of pockets so I can keep all my "extras" right on me, and not have to always worry about holding onto or setting down a camera bag. Kaeli surprised me with this nativity set. It is a Willow Tree set, and so beautiful. We usually get a new one to add each year, but didnt have the $ to splurge this year. It was such a thoughtful gift from Kaeli, and I think I may be finding a permanent place for it with some others in the dining room.
Here is my happy boy with his book. He was so excited that we just had to take it to church with us. His primary teacher was there this week with her husband since both were speaking in our ward. When he found out she was there, he grabbed his book and ran out to see her in the foyer. It was fun to watch him show off his new book and for them to share that moment together. She has been so special to Ky and we are so blessed that even though they have moved that she will still be his preschool teacher. Ky has done so well with her, it is wonderful to me that he has made such a special bond with her at church and for school.
A big hit for Ky this year was a musical book from my grandmother. It had disney characters on it, and plays tons of Christmas songs. Ky sang and danced to that thing like there was no tomorrow, it was pretty funny. It was fun to see him esp excited about things this year - we got some great reactions and it was great to see him enjoy everything so much.
Photo courtesy of Kaeli :)
I got a couple of extra fun surprises this year. Preston bought me a photography vest - a coolio thing with tons of pockets so I can keep all my "extras" right on me, and not have to always worry about holding onto or setting down a camera bag. Kaeli surprised me with this nativity set. It is a Willow Tree set, and so beautiful. We usually get a new one to add each year, but didnt have the $ to splurge this year. It was such a thoughtful gift from Kaeli, and I think I may be finding a permanent place for it with some others in the dining room.
Baxter Family Christmas III
Both Preston & I grew up eating egg dishes on Christmas morning. When we had kiddos, we decided that we needed our own special traditions - one of which has been eating dessert waffles for breakfast. Usually we also add scrambled eggs, hashbrowns, bacon, etc. But this year we just kept it simple - waffles and fresh fruit. All of us have our own special way of making and eating our waffles, any way its done, it is always delicious.
Caiden, along with most of the family, loves to top his with the M&M's from his stocking
Ceana has a couple of faves. She is also the one who perfected the open-faced, eat it like toast, technique. It esp works when the waffles are loaded with extra yummies.
Kaeli, always the drama queen, had to show me her "see food" - her specialty is just vanilla ice cream with choc syrup - sweet and simple
Here is Colton demonstrating the open-face eating technique
Here is Caiden on his 2nd go of things, loaded with all the extras he didnt have the first time. I just loved Colton's smile, it shows how much the kids look forward to this special treat!
Caiden, along with most of the family, loves to top his with the M&M's from his stocking
Ceana has a couple of faves. She is also the one who perfected the open-faced, eat it like toast, technique. It esp works when the waffles are loaded with extra yummies.
Kaeli, always the drama queen, had to show me her "see food" - her specialty is just vanilla ice cream with choc syrup - sweet and simple
Here is Colton demonstrating the open-face eating technique
Here is Caiden on his 2nd go of things, loaded with all the extras he didnt have the first time. I just loved Colton's smile, it shows how much the kids look forward to this special treat!
Baxter Family Christmas IV
Kels wanted to show me her M&M's
Ky was really having a hard time with his waffle after he loaded it with all the good stuff. Ceana remembered a trick her Aunt H uses for her little boys - she said a pizza cutter is perfect to cut everything! She was right. I have this bit of info tucked away for future use...
Ky decided he only wanted his Christmas M&M's on his ice cream, everyone has their faves
After we were all cleaned up after brunch, we found Kels in the dining room. Little miss had found a dish towel and put it over her head. This seems to be her new favorite pose along with the words "I am so too cute!"
Ky was SO excited when he opened his present from Grandma and Papa - his very own Mickey Mouse! He has talked non-stop about our trip to CA last month, and I am thrilled that all the extra fun things like a DVD of a Shamu show from Sea World and a stuffed Mickey bring the memories back for all of us to share! It has been esp fun to see and hear Ky's reactions (Mom! Shamu is SOOO great! or Mom, I saw Mickey at Disneyland!) Hearing him still be so excited really makes me so happy that we took the kids last month. It really was special for all of us.
Ky was really having a hard time with his waffle after he loaded it with all the good stuff. Ceana remembered a trick her Aunt H uses for her little boys - she said a pizza cutter is perfect to cut everything! She was right. I have this bit of info tucked away for future use...
Ky decided he only wanted his Christmas M&M's on his ice cream, everyone has their faves
After we were all cleaned up after brunch, we found Kels in the dining room. Little miss had found a dish towel and put it over her head. This seems to be her new favorite pose along with the words "I am so too cute!"
Ky was SO excited when he opened his present from Grandma and Papa - his very own Mickey Mouse! He has talked non-stop about our trip to CA last month, and I am thrilled that all the extra fun things like a DVD of a Shamu show from Sea World and a stuffed Mickey bring the memories back for all of us to share! It has been esp fun to see and hear Ky's reactions (Mom! Shamu is SOOO great! or Mom, I saw Mickey at Disneyland!) Hearing him still be so excited really makes me so happy that we took the kids last month. It really was special for all of us.
Baxter Family Christmas V
Caiden received an extra fun present from a magic shop grandpa found when we were at Universal Studios. It was a big hit!
This is the fun reaction Ceana made when she opened her gift and remembered what she had picked out with grandma at The Sock Shop at Universal Studios. It was a pair of wild zebra striped, knee high socks with neon peace signs - I am sure she will be posting more picts on her blog too.
Colton loved his Pluto face race car!
Kaeli was so excited about this shirt. She walked by it and looked at it lots when we were at Sea World, but had chosen to purchase something else. She didnt know that Grandma was planning on a special surprise!
Of course everyone knows that kels is our Tink-bell girl, so the new mini Tinkerbell doll was the perfect gift (as you can see from the hugs it got before she even got her new doll out of the pkg)
This is the fun reaction Ceana made when she opened her gift and remembered what she had picked out with grandma at The Sock Shop at Universal Studios. It was a pair of wild zebra striped, knee high socks with neon peace signs - I am sure she will be posting more picts on her blog too.
Colton loved his Pluto face race car!
Kaeli was so excited about this shirt. She walked by it and looked at it lots when we were at Sea World, but had chosen to purchase something else. She didnt know that Grandma was planning on a special surprise!
Of course everyone knows that kels is our Tink-bell girl, so the new mini Tinkerbell doll was the perfect gift (as you can see from the hugs it got before she even got her new doll out of the pkg)
Kelsianne's First Haircut
Little miss got her first haircut yesterday, more out of neccessity than out of style. I was so hoping with this last girl that I would finally get to do all the fun, cute girl hair stuff - much to my sadness, she will have none of it. We are lucky if she will let us just brush it most of the time. Preston helped me with the kids' baths yesterday, and while it was wet, I went ahead and cut it. It is a bit shorter than Kaeli or I had thought, but I think it is cute and it will grow out with this short style and will work well for her and us. No more fights over brushing it, or trying to keep it out of her face. It will just be cute and short and easy.
The Principle of Gratitude
Yesterday our RS lesson was on this subject. It was a lengthy discussion with quite a bit of input from the sisters (esp considering how few of us were in attendance) One comment that Sis S made while teaching her lesson was that sometimes we have life experiences that just are what they are. They are just there, and nothing that you can do to change them. Her other comment was that sometimes she told Heavenly Father in the midst of those most challenging expereriences that she couldnt/wouldnt do it anymore, that she was done. The lesson centered on how to find a change of heart, and find gratitude for even the tiniest things in the midst of our not-so-bright attitide at times, when we are in the middle of all the "it is what it is." I think we all have similar experiences, and maybe I needed it because of what was going to happen today.
Many people may know that we are challenged with 2 very significant "it is what it is" experiences. One of which has been and is my health. Several weeks ago I was given a recommendation for new primary care physician for myself. I have been through several in the past 10 years, all of which have either helped for a bit, or not at all. I think this time, though, I may have finally found the dr who will be able to really listen and help.
When I first met with him, he asked for a TON of bloodwork to be done - interestingly enough, bloodwork that has NEVER been asked for by previous physicians. My appt today was to go over the results of all that lab work. I was pretty blown away by what he found out, and by what we are going to need to do about what we found out. I am also blown away by the blessings and by the magnitude that my conscious effort of an attitude of gratitude is going to need to be.
Here is what I found out today -
1) In the last three years (maybe longer than that) I have been exposed to, and contracted the Epstein-Barr virus (more commonly known as Mononucliosis), Parvovirus and CMV (both severe viruses that attack the auto-immune system).
2) All 3 of these are closely tied to Chronic Fatigue Syndrome AND FibroMayalsia ( both of which have been brought up in recent dr visits) I now have a conclusive diagnosis for CFS, but not quite FM as my symptoms do not meet all the markers for this disease.
3) Although I no longer have the 3 above mentioned viruses and my body has and is building strong antibodies to them, I can no longer give blood, and my auto-immune system may be at extreme risk in a future event of severe illness or anything that may be considered life threatening (ie need for blood transfusion or chemo, etc)
4) There are ZERO things that drs can do yet to fight any or cure the above mentioned viruses.
4) My B12, Vitamin D, and iron levels are almost non-existent (ie normal reading for iron levels is 60, my reading was a 10). They are extra low because the lab work shows that my body does not absorb these appropriately.
5) Over the next 2-3 months I will be undergoing some pretty extreme measures to try to balance out my numbers in these areas and hope that my body will adapt itself to absorb these at a more normal level. The extra helps will include increasing my vitamin D and B12 levels (by dissolvable tablets and possibly daily injections) and a 6 week intensive iron infusion treament (done at the hospital's dialysis clinic).
6) At the end of all of these treatments/therapies I will have a follow up appt to re-test all these levels and see what the next step in the game plan will be.
7) On a side note, the sleep help that my dr gave me is another no-go, and I will be talking and working directly with my sleep specialist (who works hand-in-hand with my new dr) about a couple more meds to give a try with.
So...where is my attitude of gratitude?
1) I finally have a dr that listens and talks with vs to me about my health concerns
2) My new dr isnt wasting a minute to try to help me find answers and pursue them
3) I finally have real answers to why I have been so ill, and as to why I am still struggling so much
4) There are meds and treatments out there to help me combat the symptoms of the viruses, even though we cant cure the viruses themselves
5) I now have TWO dr specialists who work closely together and they are both drs I really like and feel like they will help me
6) The hope that maybe in a few months, I could be feeling tons better and be back on track to finding better health
So...where am I going to need to work to find gratitude?
1) Taking meds/vitamins/possible injections every day
2) Sitting through an infusion process week after week, when I know how much I struggle with needles/IV's, etc.
3) Being patient, calm, and show outward gratitude to those health care staff who will be helping me through this next piece of things
4) Showing some kind of trust and faith in Heavenly Father, even in just a miniscule form, and hope that it will be enough to help me get through the tears and rough times
5) Knowing that I am going to be given the gift of empathy and understanding for others
6) Allowing others to help as/where needed during the next couple of months as our schedule is again turned upside down because of extra medical appts
It is going to be a long learning process. I am sure there will be many tears, and fears as I again go through a different chunk of this "is what it is". I am hoping that maybe this time, I will do a better job at finding trust and faith and willingness to learn during the process rather than just after it. I hope that I can remember that this whole experience will not only be for my good, but possibly for the learning and good of others. I cant promise I will go through this with Sis B's "bring it on" attitude (that I so love about her), but all I can do is try my best, and hopefully that will be enough. I will try to keep posting often once we get going on things. Watch for new updates in a few weeks.
Many people may know that we are challenged with 2 very significant "it is what it is" experiences. One of which has been and is my health. Several weeks ago I was given a recommendation for new primary care physician for myself. I have been through several in the past 10 years, all of which have either helped for a bit, or not at all. I think this time, though, I may have finally found the dr who will be able to really listen and help.
When I first met with him, he asked for a TON of bloodwork to be done - interestingly enough, bloodwork that has NEVER been asked for by previous physicians. My appt today was to go over the results of all that lab work. I was pretty blown away by what he found out, and by what we are going to need to do about what we found out. I am also blown away by the blessings and by the magnitude that my conscious effort of an attitude of gratitude is going to need to be.
Here is what I found out today -
1) In the last three years (maybe longer than that) I have been exposed to, and contracted the Epstein-Barr virus (more commonly known as Mononucliosis), Parvovirus and CMV (both severe viruses that attack the auto-immune system).
2) All 3 of these are closely tied to Chronic Fatigue Syndrome AND FibroMayalsia ( both of which have been brought up in recent dr visits) I now have a conclusive diagnosis for CFS, but not quite FM as my symptoms do not meet all the markers for this disease.
3) Although I no longer have the 3 above mentioned viruses and my body has and is building strong antibodies to them, I can no longer give blood, and my auto-immune system may be at extreme risk in a future event of severe illness or anything that may be considered life threatening (ie need for blood transfusion or chemo, etc)
4) There are ZERO things that drs can do yet to fight any or cure the above mentioned viruses.
4) My B12, Vitamin D, and iron levels are almost non-existent (ie normal reading for iron levels is 60, my reading was a 10). They are extra low because the lab work shows that my body does not absorb these appropriately.
5) Over the next 2-3 months I will be undergoing some pretty extreme measures to try to balance out my numbers in these areas and hope that my body will adapt itself to absorb these at a more normal level. The extra helps will include increasing my vitamin D and B12 levels (by dissolvable tablets and possibly daily injections) and a 6 week intensive iron infusion treament (done at the hospital's dialysis clinic).
6) At the end of all of these treatments/therapies I will have a follow up appt to re-test all these levels and see what the next step in the game plan will be.
7) On a side note, the sleep help that my dr gave me is another no-go, and I will be talking and working directly with my sleep specialist (who works hand-in-hand with my new dr) about a couple more meds to give a try with.
So...where is my attitude of gratitude?
1) I finally have a dr that listens and talks with vs to me about my health concerns
2) My new dr isnt wasting a minute to try to help me find answers and pursue them
3) I finally have real answers to why I have been so ill, and as to why I am still struggling so much
4) There are meds and treatments out there to help me combat the symptoms of the viruses, even though we cant cure the viruses themselves
5) I now have TWO dr specialists who work closely together and they are both drs I really like and feel like they will help me
6) The hope that maybe in a few months, I could be feeling tons better and be back on track to finding better health
So...where am I going to need to work to find gratitude?
1) Taking meds/vitamins/possible injections every day
2) Sitting through an infusion process week after week, when I know how much I struggle with needles/IV's, etc.
3) Being patient, calm, and show outward gratitude to those health care staff who will be helping me through this next piece of things
4) Showing some kind of trust and faith in Heavenly Father, even in just a miniscule form, and hope that it will be enough to help me get through the tears and rough times
5) Knowing that I am going to be given the gift of empathy and understanding for others
6) Allowing others to help as/where needed during the next couple of months as our schedule is again turned upside down because of extra medical appts
It is going to be a long learning process. I am sure there will be many tears, and fears as I again go through a different chunk of this "is what it is". I am hoping that maybe this time, I will do a better job at finding trust and faith and willingness to learn during the process rather than just after it. I hope that I can remember that this whole experience will not only be for my good, but possibly for the learning and good of others. I cant promise I will go through this with Sis B's "bring it on" attitude (that I so love about her), but all I can do is try my best, and hopefully that will be enough. I will try to keep posting often once we get going on things. Watch for new updates in a few weeks.
Tuesday, December 21, 2010
Photography Fun
Things with photography have been really hopping the last few weeks. I have had several client shoots, and a couple of special projects I was asked to do. My last post was about one of those special projects - a fine art piece that I was commissioned to do. Havent heard yet how it was received, and I will be anxious to find out later this week. I am attaching an image I took of the finished piece. This top image isnt very good, but it does show the finished product. It is B&W all except the lamp post which I did as a minor color enhancement.
This 2nd image is the one the client first asked for - and then decided she didnt like it with the color enhancements. See if you can look at both images and see all of the changes I made...I am not sure which one I like better....
A couple other fun projects that I have done recently was that I was asked to be the photographer for a Tri-Stake Winter Ball and for our stake Live Nativity. Both were a total blast, and I will be working hard to get images edited before the end of the break, along with doing 2 more client shoots coming up this week. It is funny how things seem to come in spurts - I either have little to no work, or I have more work than I know what to do with. The blessing of having all that work right now is that it is going to help me purchase a new computer system. My laptop is in its last death throes. I have had to move all my work to the home computer, which has been challenging since the kids need that computer for school work. It will be good to have a system with all the extra bells & whistles and have my own work space back soon. My laptop may get a once over from Preston's brother and then handed off to Ceana or just as an extra school computer - that end of things is still in the works...
This 2nd image is the one the client first asked for - and then decided she didnt like it with the color enhancements. See if you can look at both images and see all of the changes I made...I am not sure which one I like better....
A couple other fun projects that I have done recently was that I was asked to be the photographer for a Tri-Stake Winter Ball and for our stake Live Nativity. Both were a total blast, and I will be working hard to get images edited before the end of the break, along with doing 2 more client shoots coming up this week. It is funny how things seem to come in spurts - I either have little to no work, or I have more work than I know what to do with. The blessing of having all that work right now is that it is going to help me purchase a new computer system. My laptop is in its last death throes. I have had to move all my work to the home computer, which has been challenging since the kids need that computer for school work. It will be good to have a system with all the extra bells & whistles and have my own work space back soon. My laptop may get a once over from Preston's brother and then handed off to Ceana or just as an extra school computer - that end of things is still in the works...It has been fun, and challenging to use this special gift I have been given in so many different ways. Be sure to watch my FB work page and my website for all of the fun images to be posted soon!
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