Good Things

Today we have had some good things happen, so I needed to be sure to write them down -

1) I got the ultimate work compliment from a 3yr old. One of my clients has this adorable little girl, who I had the opportunity to photograph 2x last month. Both shoots were family events. Apparently she got to fly with her parents all the way to Montana to visit my friend's side of the family during the holidays. My friend A told me her little cutie was very concerned when she asked "How is Rory going to get to grandma's house to take pictures?" She knew that family picts meant lots of fun time spent with me. It doesnt get any better than that! I also received other nice compliments from A about the extended family shoot I did, which also made me happy and relieved since I have been feeling unsettled about that one. Good to know that the client is happy. Always helps a ton to know that I really am doing ok.

2) The squeaky wheel really DOES get the grease. We took some extra initiative in the last few weeks to have Colton tested by a couple more crucial specialists, hoping to gather enough fire power to take to his next IEP meeting. The crucial pieces that we have been missing are: 1)the school staff being willing to take all of the specialists info and reports and physically write the need for services all tied to the VCFS, and 2) scheduling IEP meetings when we request them and holding them in a timely manner. Thus far, they have been unwilling to do so, and have not scheduled timely meetings and have dismissed all of the outside reports because he was not receiving services from the district specifically. We have been requesting both since before the beginning of the year.
Today I got a phone call from the school speech specialist who informed me that not only are they going to hold a whole staff (speech, psych, class teachers, district director, ORCA director, me, local director) IEP meeting within the time we have requested, but at that meeting the goal will be to RE-WRITE his entire IEP to include all of his current needs for speech, OT, and psych, and tie it all back to the VCFS - the medical piece that is at the root of everything and the ONE thing that has been keeping insurance from covering his other services. I still have a niggling amount of doubt, but if we can take all the new reports and prove, finally, what we have been asking for all along, then we are going to move forward at a rapid pace and be able to receive the help Colton is needing. It will be a HUGE relief, more than I could ever write in words

3) After talking with the pediatric psych specialist on the phone yesterday, I was told that Colton now has a conclusive diagnosis for ADHD from 3 different medical specialists. You may be wondering why I have added this to the list. Even though this is going to bring on its own set of challenges and is scary to think about, the good thing is that we have something conclusive, something tangible to work with. We have something that we can go forward with, whatever that may include. It is a good thing.

4) My children are crack ups - and we are needing that right now. Today specifically these have been things out of my children's mouths -
Kaeli - came in fussing about the hot and humid temperature in the house - all the while spouting it out in a heavy British cockney and Irish brogue. It is hard not to laugh hysterically when she does it. She could totally get away in real life with those accents.
Colton - I put on Sleeping Beauty for the 2 little peeps. Colton informed me "I don't like that movie, it has KISSING in it, that is gross!" as he scrunched up his whole face and closed his eyes.
Kelsianne - She was overheard by Preston this afternoon singing "blah, blah, blah" to the tune of Jingle Bells. She is also struggling with saying the word balloon, and Ceana & I were laughing hard trying to help her break the syllables into pieces she could say. Her other big endeavor is drawing pictures of "points" and "wuwoons" - now while I know what "wuwoons" is (after ceana told me that she was really trying to say balloons), I have NO idea what "points" are or is...probably something to do with the little boys play something...
Caiden - He cranked out some serious homework today and it was fun to see him so proud of himself, but also how tired he was. His own take was that "doing lots of homework is EXHAUSTING!" as he flung his arm over his face and wiped his brow with his forearm. I thought we only had 2 drama queens in the house, he has good teachers I suppose.

5) It felt like early Spring outside today. I know it is totally tricking me, but after all the freezing temps, and then suddenly having it turn 55 and rain; that Spring smell was in the air, and the sound of frogs echoed across the empty pastures, and I could actually see the moon through wispy clouds. It was nice to think about all that is coming with the warmer weather - even though I know it is only January...

6) I have a wonderful husband who makes me laugh, who holds me when I cry and worry, who does dishes and laundry, who drives Ceana to seminary every morning just so I dont have to, who comes home from work in the middle of the afternoon just to help kiddos with math, who stays up until all hours of the night getting my new computer system up and running and does all the tweaking when I still can't get things figured out, who is patient with our ever changing schedule, who meets us for on-going medical appts, who is very patient with hysterical girl genes running rampant in the house right now, who helps Colton read from his scriptures for mini FHE at night, who runs around the dining room table chasing and "running" from little people just to make them squeal, who works so hard to provide for our family, who is gentle and loving, and my best friend. I am truly blessed to get the privilege to love him and spend my life with him.

7) Sugar is a really lovely thing. It is a chocolate sprinkly motivator, and reward, for boys struggling with school work. It is energy for extra long days after very short nights with no sleep. It is sharing cinnamon & sugar sweetness with a 2 1/2 yr old. It is melted chocolate on your fingers and crunchy goodness in your mouth. It is going to the "wrong" store just so you can bring home treats from the bakery. It is rediscovering treats that were childhood favorites and finding out they are still as good as they were then - esp if you toss them in the freezer (frozen Twinkies are the ONLY way to go :) It is seeing the beaming smile on the face an almost 8yr old as he eats his favorite frozen treat, that he bought with the pennies he had saved himself.

8) Holding a baby in your arms is one of THE best things in the whole entire world. I got spoiled by getting to hold 2 today. We get to enjoy a friend's baby on Thursday mornings when she swaps me a baby for Ky and drives preschool carpool. She is a little cutie with huge eyes who likes to watch everything and be right in the middle of all that is going on around her. This morning I did the one-handed mom thing while holding her and helping Colton with homework. I also enjoyed watching and listening to Kels enjoy her too. Tonight I got to hold another little sweetie of a friend in our ward at a RS activity. My friend and her husband are both of Polynesian descent, and their little girl is everything beautiful that the Polynesian people are. She has dark, gorgeous eyes with eyebrows that are constantly crinkled as if she is trying to figure everything out already. She has a darling smile and a tiny, pouty lip and chubby baby cheeks. Holding and rocking her in my arms was wonderful. She fell asleep while I was holding her, and it was so nice to just look down at that sweet little face and know that I was holding an angel.
I miss having a baby in our home. I was so sick again after Kels came to us, that I missed a ton of her early baby stages. She was so big when she was born, and has just not stopped since. She is now quite the big girl and doing everything her brothers do. I am sad sometimes knowing that she will never be a big sister, that all those little baby days are done for us. I guess I am just extra lucky to know so many people with babies, and that I can enjoy other little ones often.

I know there are probably other things from today, but this one post has taken me most of the day to get written, and if I dont close now, I may fall asleep here in front of the computer. I have my next iron infusion appt tomorrow, hopefully when I am back home I can add a few more things to this list, including that the appt went well. Until then, count your many blessings, name them one by one and it will surprise you what the Lord hath done!"

January Snow Day I

Midway through the afternoon yesterday it started "snowing" - you know that light powdered sugar sprinkly stuff. Not a whole lot to get all worked up about, except that you forget we live in Oregon where 1/8" drops on the ground and everything comes to a screeching halt, and the kids come out of the woodwork from all directions screaming that they just HAVE to go outside....
It took awhile, but the snow did change to the big, fat, wet flakes that are something to get worked up about, for all of about 10 minutes, before it turned back into ice and then back into rain...

Even a small sprinkling makes for pretty pictures...

The boys were the first to be out the door, and you notice that Colton finally remembered that snow is COLD, and shortly after that made a beeline for the door and inside to get his jacket. They stayed outside for longer than I thought they would, and enjoyed their winter adventure.

January Snow Day II

The kids were chomping at the bit to be outside, no matter what. Kels was esp anxious to be out there and gave no thought to a coat, long pants, shoes, etc. until she had been out there a few minutes and realized that snow is cold... then she and Colton decided it might be a good idea to add some layers if they were going to stay outside.
Caiden was the first to start gathering the bit of snow wherever he could. He came to me with this "Slushman".

Kaeli gathered the more fluffy snow from the hood of the beast and put this little cute guy together.

Ky & Kels thought Kaeli's little snoman was cute and not sure what happened exactly, but it set Kaeli off into laughter - so nice to have the camera in the right place at the right time...

January Snow Day III

I love this pict of the girls. It just shows how much Kels adores "her Kaeli" and how much Kaeli enjoys playing and spending time with her.
This is Ky doing his best impression of a penguin...

Do you notice how 2 girls are NOT dressed for 30 degree weather, but just had to be out there anyway?

Caiden had gathered up a big chunk of snow and probably would have tossed it at Ceana if given the chance...

Trying To Keep Up The Good Fight....

This last week has left me struggling for a hand-hold in life. Reading several friends' blogs tells me we are sharing parallel lives, though I feel I am not handling things nearly as well as they are. Their blogs are filled with humor and thought-provoking statements about their circumstances, and things they post result in reactions from others that flood their inboxes with comments.

I open my heart (and my big mouth) to post here for our family journal, and I am 99.9% sure that the only person who reads (or cares about) my posts is my sweet, patient husband.
Does it matter at all that I post here, will my children care about having this journal of our family journey together? Will it help them understand when they are older, that I did the best that I could with what I had available in the moment? I don't know...all I can do is write now and hope that someday it might matter. So here I post my most current heartaches and worries, and in the process keep trying NOT to compare myself to others out there who I am in awe of, and will never be, because I am just me...

We have come to a point of "battle" mode again, in every area of life.

Medically, Colton & I have more on our plate than it seems we can get through. We are traveling to Corvallis multiple times a week, and sometimes even farther for both of us to receive needed care. We have had to condense our many appts, for both of us, to specific providers to try to alleviate some of the constant travel. We have both added several new specialists in the last couple of months trying to find answers to new and emerging concerns. For me, it has been trying to find answers to old concerns, and receiving results that have been mind-blowing and leaving us wondering what to do next. We are still finding more questions than answers. We try one step at a time to figure out a new remedy, and spend lots of time waiting to see if things work or not. I am in that process now, trying to resolve several things at once, and also doing a lot of waiting....In this process we are waiting for official reports for Colton so we can move forward with securing services, specialists and possibly new medications. Through all of this, we have truly been blessed with the very best care available, and that is something that I am thankful for daily.

Educationally, the kids have all floundered through the curriculum this term, and are still way behind even as the end of the term is now only 2 weeks away. Most of this has been a result of before-mentioned medical stuff. We are also still in battle mode with the school district to get them to accept the medical stuff to apply to Colton's IEP. You would think continuing circumstances would be case-in-point, and a no-brainer for having everything in place. Because they are not providing services, they have thus far dismissed the specialists' reports, wanting their own results. This has left us with 1/2 the school year gone, and Colton still not receiving services and documentation that should have been in place in September...It has also left me having to force their hand and request specific meetings to make sure these things are finally put on his IEP. Most likely, though, the benefits will not be of help until next school year, leaving us to struggle to complete 1st grade curriculum. It also leaves us having to work with ORCA teachers and administrators to ask for exemption and some extreme modifications for Colton to successfully complete the curriculum before the end of the year. It is exhausting being the middle man...

Socially, mostly because of medical and school, things have hit a breaking point, resulting in gallons of tears because others do not even try to understand where we are in life. It doesnt help to have the girls come to me to say that someone commented directly to them what a horrible choice we have made by having them in ORCA, and how they are never going to function in the real world without "proper" educational and social interactions. I wish, just for a moment, that others would consider where they are, and in comparison, where we have been for the last 10 yrs. That they would give a little patience and understanding, instead of intolerance and criticsm. I would be interested to know how they would have done in similar circumstances...I try hard not to be upset, but when things are thrown right at the kids, it is hard not to be. Preston also carries bishopbric, military command staff, and project manager responsibilities that take him away from home often. These are things that are also very different from most others that we know. We often have to divide and conquer our family schedule, which includes enlisting the girls extra help and care for little people when Preston & I need to be gone at the same time. It doesnt leave a lot of room for getting out and about with friends, the girls' or ours. None of these things is going to change, so how do we find more time or more room, and ask more understanding when it just doesnt happen like we would hope? I often worry that we are far outside of the social loop because others are just plain tired of hearing that we are scheduled 6 months or more out, that what social stuff we do have is centered around church activities, that all of our craziness and our season in life just doesnt mesh with any social circles anymore...

Family interactions recently have resulted in friction and fireworks, almost on a non-stop basis, including having my son scream at me that he hates me and other not-so-lovely things. Have we gotten to a point where mom 24-7 is more than any of them can handle? We have gotten to a point where we will be looking into some extra help for the boys' extreme behaviors where they can channel that energy in a positive direction. Hopefully things will be in place soon. The girls are teenagers (and the youngest one has enough attitude to be one too) and our days flux between tears, stormy silence, focused work and hysterical laughter. I never quite know what each day will bring with the kids. Some days we all are off kilter from the get-go, others we are mostly productive. The house is often left untidy, trying to focus on what is most needed in the moment. In the long run, will it matter the house is often in disaster mode? Maybe not, but for now, it seems to matter alot. Having to choose between doing dishes or laundry, or helping someone with an assignment, or being too tired to think about doing either because I have spent hours in the car and at appts, adds to the uncertainty and tension.
The challenge really still is not having the consistency or routine in things because medical appts. and constant, long chunks of travel are part of almost every day. How can the kids not feel it, and then find the best way they know how to express themselves about how things are. Recently, those expressions have not been positive, and I am at a loss as to what to do or change to help any of us.

Spiritually, I feel like we are often on the edge. We try each day to make sure scriptures are being read and studied to prepare for seminary, meetings and temple sessions that are being attended, and Sunday classes taught. We are striving to make sure mini-FHE is being done each night. We are striving to do the things we have been asked to do. Striving has often resulted in tweaking - praying over multiple meals eaten in shifts, offering up what I feel are irreverent prayers because being in the bathroom, shower, or car are often the only times/places I am on my own for even a few minutes. It is taking advantage of a tiny teaching moment while driving a car full of 4 & 5 year olds to preschool because one of them asked about rainbows. It is asking in silent, heartfelt prayer for calm and patience while being screamed at by my almost 8-yr old or discipling my 10 yr old who seems to still have no concept of consequences. It is striving not to beat myself to a pulp for not being able to teach the kids important gospel principles that I dont have a grasp on myself. It is being thankful every moment that Heavenly Father has sent the right primary teachers and YW leaders into my children's lives. It is just trying to get through each day, hoping that we are doing things a little bit better than the day before. Sometimes it is doing all we can, and keeping hope that the little bit we have to offer will be enough.

So, I guess that is us right now, has been us for a long time, will probably still be us for quite awhile.... Not sure it helps to share more with others, in the hope it might bring some understanding. Maybe it just helps with sharing TMI and pushing others further away. Maybe it will give a small glimmer to the kids as they are older and remember these times that we struggled so. Maybe it just helps for me to get it all written down somewhere besides my heart and mind and out where I can think things through a bit more. Whatever it is, for good or bad, this is us. For now, it has to be enough. If it isnt, we will just keep trying to get out of bed every day and wear real clothes, it will be to keep trying to put one foot in front of the other, to keep trying to get through each day with kids fed (whatever that might involve), clothed, safe, and alive, it will be to keep trying to find and show patience, and gratitude for all things big or little (potty prayers are better than no prayers right?), it will be to just keep trying to do the best we can...and hope that someday it will be enough.

Emotional Day

Seems my emotions are on a roller coaster today. This morning was pure joy and also tears of sadness and discouragement.

I just have not been able to shake the fact that, even knowing our cirumstances are so different from everyone around us (friends and family), we are missing building those important ties and I am failing as a mother.

The kids have really struggled recently with life in general. Part of that has been our 2 week battle with illness. Some of the kids got really sick, others a little bit, but it has been enough to knock them out of the norm. The other part has a great deal to do with how much I have been, and will be away from home because of all the medical stuff for me and Colton.

When I am away, the kids battle tooth and nail, and homework gets further behind. I keep thinking at times that if they were in school, getting help and homework completed, that we would still be seeking help for little ones. That help hasnt been, and isnt available, so I am not sure that having the kids in "regular" school would really change anything.

I know that I feel and see the girls breaking under the stress of school work and having to be responsible for little people. I feel guilty putting so much pressure and responsibility on them. I am way beyond being able to meet all the needs that are required of me, for the kids, or house, or school, or anything. I feel the huge pressure and stress that no one around us understands where we are, esp the kids' and our friends. I almost feel like we just dont belong anymore, anywhere. That our season of life that continues to be filled with extra responsibilities and struggles has isolated us so far away from social circles that it wont ever be re-gained.

I know I am not supposed to compare us to anyone else. It is hard at times, esp when the girls and I get so lonesome and it seems the only inviting that is done is on our side, and often those invitations are not accepted or reciprocated. I often feel that so much struggle and difficulties have happened in the past, that others can't see past them to who I am, to who we are now...

Preston & I tried to do some chatting this morning, but it didnt seem to stop the tears from flowing then, and still now, even though most of the day is over. I feel the wave of all the stuff that hasnt been accomplished, and the day is 3/4 gone. Life continues to come and go, and yet I feel like very little, if anything is done in our forward progression - mostly because I am not healthy enough, not able to fulfill all of the "shoulds", not living up to or fulfilling all of the expectations of those around us.

Just feeling unsure about alot of things.

Iron Infusion #1

Just wanted to do a journal post about my experience yesterday. It was and still has been a very emotional experience.

Yesterday morning I checked in at the Corvallis Clinic Oncology desk. There was lots of info to input and then I was taken back to the treatment area. The nurse assigned to me was great, really sweet, kind and patient. She went over some more paperwork and talked with me about the treatment stuff and then we got started.

Getting started for IV or blood draw anything usually requires extra work for the nurses. Since I dont have veins that tend to cooperate. The nurse piled on the wonderfully warm hospital blankets and then wrapped my arm in a hot, wet washcloth AND a heating pad to see if she could bring some veins to the surface we could work with.

In the process of me waiting, several other patients came in. I was about in tears as I listened to and watched one other patient in particular. She spoke about how happy she and her husband were to have a "break" from her chemo during the holidays so she could just enjoy things. The break seemed to have been too much on this end though as she shared how she had become physically sick just thinking about having to start treatments again. She was still strugging while there at the clinic. I watched the face of her sweet husband as he tried to keep a light sense of humor, but I could see the pain and sadness in his eyes as he watched her. I couldnt keep from crying myself. It broke my heart to listen to them, and gave me a great appreciation and a sense of awe for the sweet nurses who devote their lives to helping others in these circumstances.

Several other patients came in with concerns severe enough to require help from the nurses to administer meds/flush out pic-lines embedded in their chests. I couldnt even begin to imagine what struggles they and their families have experienced.

I was there for my own health deficiencies, but watching and listening to others I cried for the fact that even with my struggles, it wasnt nearly as much as these other patients had and were going through.
As I tried to tell Preston about my experience this morning, I cried again just describing things.

I often wonder at the lessons I am supposed to learn at times like these. I was there because my own health has been in jeopardy, and we are just now finding help that we hope will help on my own road to healing. Is my lesson to continue to learn patience, to continue to learn to endure "all that the Lord would see fit to inflict upon me", to learn gratitude for the experience and the chance to endure, or is the greatest lesson to learn one of empathy? Is it something else that I am missing altogether?

In the last 24 hrs I have reflected back on some of the most difficult experiences we have had. I remember the words of blessings that specifically told me that they were not to help me, but to help me empathize with others who would need my help later.

That was definately true when we thought we had lost Ky. So many sweet friends struggled with loss that year. I struggled with guilt, as I struggled to give love and support, not understanding all the why's, not yet understanding that it wasnt my job to understand, only to give what I could, which really wasnt much at all as far as I could tell.

I wonder if again, that this experience is not only for my good, but because this experience is going to be needed later. That as I will sit week after week, watching and listening to others around me, that there are things I am going to need to hear or say or know. It has been heavy on my heart and my mind.

The cute nurse I had finally came over and got things going. She poked and rubbed my arm for awhile before she had a good choice. She was pretty good, esp considering she used the smallest needle she was allowed and had to thread a tiny tube into the vein. She was able to secure it in place and got me going. Knowing my history of extreme reactions to things, the nurses kept pretty close tabs on me. The only snag we really hit was that it stung and that it caused my arm to go a bit numb. They re-positioned my arm, and piled on more blankets. That seemed to help alot. All the activities I had brought with me ended up staying in the bag because moving my arm caused it to hurt. I ended up trying to read a book, but really with not much success at that either. Will have to do some thinking about things I want to take with me next time - maybe music or movies or conference talks or something...
They kept an eye on me, checking my arm to make sure things were ok. That 90 minutes was a pretty long time to just sit and try to keep my composure, I was having a hard time. Once the iron was in me, I sat another little bit while the line was flushed with saline. Then we hit a couple more tiny snags. The first was the nurse trying to get me to bleed on purpose back through the line. It didnt cooperate though and she had to do some fancy tweaking to finally get it to draw the blood back out. She said it was really important that she could get me to bleed so that she could confirm that the line was where it should have been. The second snag was when we were all done and I was ready to roll. I felt light-headed and had a sudden headache. When the nurse checked my blood pressure again it had dropped 10 points. She was a bit concerned, but not overly so. She made me sit and drink some more juice and we took things slowly until I felt ready to go. I think she was most concerned with me being ok enough to drive home on my own. I did ok though, and thankfully things were mostly quiet here at home for the afternoon.

I would say that this first experience was a smashing success - esp considering how well I usually DON'T do with stuff like IV's, nurses, hospitals, etc. I cant say that I am looking forward to 5 more weeks of this, or the monster blood draw the week after I am done with treatments. I can say that I know that I will be in good hands and that the nurses will be wonderful, and the care I will be given will be more than enough to meet my needs for the next several weeks.
I can also say that I will be doing alot of thinking about things, and leaving things just open-ended to what I am supposed to learn from all of this. Not sure what that is yet, and maybe I wont for a really long time, but maybe there will be something, just have to be watching for it.

Just a PS about Colton. He has seen the pediatric pyschologist finally, and we are again in holding pattern until we get the results back. We will be 99.9% sure we will have a conclusive ADHD diagnosis from 3 sources now. He will have a speech eval coming up this week, and will be meeting another new medical specialist. Lots on our plate, but hoping with more conclusive results from specialists it will at last give us the "fire power" we need to get his IEP in a final stage to meet all of his educational needs, and be able to seek the rest of the specialists that are currently on hold. Will post more as I have news to share.

More Medical Updates

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.

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.

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.