Just the Two of Us

Aviana and I are thoroughly enjoying our day together today! We are having a calm, peaceful day, while whizzing our way through therapy.

I sure do love, and admire this little girl of mine.

Doesn't she look thrilled to be on my lap??

Flying High Again

Here are many of the pictures from our flights to and from Philadelphia. Aviana has always been a good flyer, even on our very first flight from Guatemala when she was 11 months old, and just put into the arms of a new family.

So, maybe not right when she wakes up!

Now, on to our Philadelphia trip....

She got upset, so we passed her on over to her Nana and Papa.

This is my favorite picture from the trip, I just wish she didn't look like an Oompa Loompa!

She's finally on to me!

And....she catches me!

To my best friend Jen~

Happy Birthday! 

I love you, and couldn't survive all of this without you!!!

Have a great day today!

Murphy

My nurse Michelle now calls me, "Murphy", as in "Murphy's Law."  Nice hah?  Well 4 months ago, we found another perfect nurse. She has been here one day a week, and sometimes more if Michelle were to take days off.  She has done an excellent job, and I was really looking forward to working with her.

Michelle's last day was this past Wednesday, and my new nurse's first day was set to be this Monday. I got a call on Wednesday afternoon explaining that my new nurse had quit the company, therefore I would not have a nurse.

The agency I use is terrible. The right hand is never aware of what the left is doing. The only reason I stayed with them was because of my 2 outstanding nurses. Without them, there was no reason left for me to stay.  I discontinued services with them this past Wednesday.

We will be going it alone for a little while.

Wish us luck. We are going to need it!

Thanksgiving

I hope you all had a happy, safe Thanksgiving!

I knew I had lost every last marble when I decided we would host Thanksgiving this year.  As the date neared, I wondered what I had done.

Not only did I decide to host the dinner, but also thought I'd try my hand at brining the turkey. We put hours, upon hours into the turkey, and I guess it was worth it. Everyone said it turned out great (I don't eat turkey).

My family all helped out, and we had a great day together.

Aviana was happy to be surrounded in family and friends all day long. I think her favorite part though, was the mashed potatoes and cranberries!

Chestnut Hill Local

Chestnut Hill is our favorite city in Philadelphia, and is a stones throw from The Institute.  My friend Ellen told them about us, and they decided we would make a worthwhile story :o)

The woman doing the interview was very thorough, and wonderful to work with. She allowed us to proof the article as many times as we saw fit. I was really happy about this, as we had learned our lesson the hard way in the past from other inaccurate reports on us.

We hope you enjoy....

http://chestnuthilllocal.com/blog/?p=527

Thank you Ellen and Constance.

From God, With Love

I cry over my sweet Kama at least once a day. The pain is immeasurable, and I am truly suffering.

Oh, do I miss my baby girl.

Everyday that passes with Rainey, leaves me with no doubt that she was sent from above. She is the best little puppy I have ever known in my life. She is thoughtful, considerate, loving, calm and sweet. She is just what we needed, at just the right time.  She possesses so many of Kama's idiosyncrasies, but is just the perfect amount of herself.

We feel blessed beyond belief to have found her, and we strongly feel we were destined to be together.

Filling the giant hole in heart is a tall order, and Rainey does her part well.

I'm not used to taking pictures of a black lab, it's a challenge ;o)

I know it seems she is always good, and for the most part, she is.  I told Dave I didn't trust her in the car, he told me she would be fine, and to take her anyway. I did, and while I was in the grocery store, she hopped over the divide, and tore my entire Lowe's purchase to pieces!

She wouldn't stay in the back after that, so she decided to ride home in Aviana's car seat. 

Negative Nancy Here

Ha Ha. I wanted to thank you all so much for going to bat for me. The love and support actually felt tangible. You guys are the best!

Honestly, that comment didn't get anymore than a quick head tilt, and a chuckle ;o)

OK, so todays topic is:

Cooking for Aviana 101

Let's see just how fast I can make your head spin! Feel free to stop just as soon as you get dizzy, and are about to pass out =)

Here are the rules:

Aviana's food needs to be fresh, and organic.  She shouldn't have anything that is frozen or canned.

Her food is measured down to the calorie, carbohydrate, fat gram, etc.

Aviana is not allowed to eat any of the following 9 foods anywhere in the near future:

*  Sugar
*  Wheat
*  Banana
*  Tomato
*  Corn
*  Dairy
*  Citrus
*  Soy
*  Peanuts

We eliminated these foods for an assortment of reasons, but mainly in regard to allergic reactions.

Because of her extensive history of vomiting, she is also to have the following "reflux" foods with caution, and in small amounts:

*   Broccoli
*   Onions
*   Spinach
*   Cabbage
*   Cauliflower
*   Etc.

Aviana has extensive testing through blood, and hair every 6 months.  Her liver level was elevated this past time, so we had to add in nutrients that feed the liver until it is within normal range again. These foods are:

*   Broccoli
*   Cauliflower
*   Cabbage
*   Dandelion Greens
*   Parsley
*   Cilantro
*   Radishes
*   Pears

Do you see what I see?  Yes, overlap. So we must be cautious.

In regard to supplements, she has:

*   Omega 3         1 X daily
*   Probiotic         3 X daily~ in the last bite of her food
*   Magnesium     4 X daily~ from lunch time on~divided
*   Plant Enzyme 4 X daily~ with main meals
*   Multi- Vit       1 X daily~ in water
*   Milk Thistle   1 X  daily~ anytime

I won't even go into the anti-stress program, which is for if she is traveling, or showing the beginning signs of getting sick.

Her meals are each to be made up of:

*   One leafy green
*   One green vegetable (not to be confused with leafy green)
*   One protein
*   One colored vegetable (not green)
*   One grain (not wheat)
*   One fruit

Now, if you're still with me....here's where the fun begins.  With her new program, also known as, The Food Rotation Program, we are never to repeat the same food more often than every four days.  What?? Yes!! We keep a daily food journal to track food intolerances.


My partner in crime, Sophie said it best, "Around here it's day 6 of the rotation diet, but feels more like 1006."  I felt the exact same, and was about to lose my marbles cooking every single day. I would like to interrupt our regularly scheduled program to show you what cooking everyday looked like:

Here's were the magic begins.

My head was about to spin off after a week of this nonsense. It's amazing how fast your mind can find a a way to cheat, and still maintain the rotation diet.

My Dad is a huge advocate of the Food Saver, and tried desperately to get me into one for years. We finally realized the benefits with Aviana's special diet. We decided to make up 4 individual menus, and then make one right after the other. We put them into their respective glass jars, complete with dry erase date atop.

We can also keep all of the extra food fresh for so much longer!!

Did the extraordinary Food Saver company have any idea just how much they would simplify my life? I don't think so!

Food Saver, you save me!

Yeah!!!! We can now cook every 4 days instead of everyday!! This means we only destroy the kitchen every four days, instead of every one day!

And, why might you ask did I feel so compelled to designate my longest post ever to this topic??

I don't know!

No really, this has been my biggest nemesis since we got back, and I am overjoyed to have found a way around it.

This diet is insane, but it has been Aviana's saving grace. My poor little sweetie was so sick, and overweight before this miracle diet. This diet transformed her into her beautiful, glowing self!

Rest in Peace 

PB & J

August 16, 2008 ~ June 17, 2009

;o(

Slipping Away

I need to learn to strip myself of the person I used to be, in a sense. I frantically hang on to that person. The person I was for the first 34 years of my life, the person who was much more physically, and emotionally available.

I was a person who had time, or would make time for family and friends, even if I didn't have it.  I was told many times that I was the glue that held my whole family together. I used to be able to do more, be there more, call more, and so much more.

Since the accident my role has been reversed, and I have fought it every step of the way.  I began to really notice a difference after Aviana came home from the hospital. Once we started her new program, it was glaringly obvious, like the brightest sun reflecting back into my eyes.  I could not see, but have been trying to make my way anyway.

As much as I want to be there for my family, friends, and so much more, I can't. I can't be anything like I was before. I have to learn to surrender, and finally only do what I know I can. This has been a hard pill to swallow. It feels completely selfish, on so many levels.

Sadly, I feel spread thin at all times. I feel like I am running on empty most times. The amount left in my tank to share with others is minimal.

Since our lives have no semblance of normal.....we miss out on so much. We cannot visit my dad in Tahoe. We cannot run out to our niece's softball game. We cannot go to friends' houses for dinner. We cannot do most things we used to. Therapy rules all.

My Aunt fell and shattered her ankle this past week, requiring an extensive surgery, coupled with an extended stay in the hospital.  I have not been able to be there at all.

I have to say, being almost absent is a terrible feeling, and one that I am not used to.

Sometimes people question therapy. I too, question the amount myself.  Many often wonder if we can just skip out.  I have gotten better about it, but the problem is; it is hard to stop, or take a day off, while seeing so many good results.

You know, to be honest, I feel it is beyond therapy at this point. I have a nurse to help out for goodness sake. My mind is on constant overload because of all normal things, and then Aviana, and Kama perched like two little cherries atop the normal sundae.

For so many reasons , I am not as good of a friend, and not anywhere near as good of a family member. I have such a hard time returning e-mails sometimes, and supporting my fellow blog buddies has become almost virtually impossible.

I am just physically, and emotionally spent, and this renders me somewhat useless.

I feel that Goo Gone has had its way with me, and I have lost my adhesive, sticky, goopy edge.

Lucky

For no reason in particular,

and every reason possible,

I have the best husband,

in the whole wide world!

Beaten, Battered & Bruised

I am physically, and emotionally deflated. I feel exhausted in every way possible. I have found myself in this current state for a multitude of reasons.

I have much to be thankful for, but for the past few days I seem to be focusing on all of the negative in our lives. Every time I strive to snap myself out of this funk, within seconds I am in tears, and back to square one.

I feel I am constantly running uphill. It is as though all of the exhaustion since the day of the accident has hit me like a ton of bricks. We have been working our fingers to the bone, and I finally feel like all I'm left with is bone on bone!

Today is Kama's 8th birthday, and instead of celebrating like we normally do, I brought my best friend home in a wooden box yesterday. I placed her lovingly in my nightstand, with her collar hanging on my side of the headboard. I want to keep her as close as humanly possible to me. I miss her so much. The pain is unrelenting.

I also picked her brother Zander up to watch him for two weeks while my brother is away. I was driving him to my house, and every time I looked in the rearview mirror, I saw Kama riding with me. I have been in tears.

I am also having a bear of a time adjusting to our new program. I am really not sure why. Well except for the nutrition part. There will be much more to come on this, as her new program has become my nemesis!!

I am also severely struggling with some very hurtful comments made to me by someone very close. These comments have sent me reeling. They have made me want to crawl inside myself, and shut everyone out. Even those who have done nothing but help me. I am so sad, on so many levels right now. Have you ever had the great pleasure of being kicked while you are as down, as down could be?? I have only been hit below the belt a handful of times in my life.  I can honestly say, it is an indescribable feeling.

I am also having a really tough time seeing Aviana in this state lately.  I am saddened that this little girl has to work as hard as she does. All responsibility falls to Dave and I, but we are 2. Aviana is one, and while one of us may have a break, she never does.

I am so sad that she has to work from sun up to sun down 7 days a week.

I am also desperately sad for Dave and I. We don't have anything that even remotely resembles a normal life. We work, work, work, work, work, and work more. I learned early on in counseling to not travel down the future path of our journey. I learned the hard way, as I kept doing it, and I would spin out of control, like one of those tops!

Lately, a few people have brought up the future, and I couldn't help but think about it. The thought is, quite honestly, devastating to me. I cry just thinking about it. Sometimes, Dave and I look at each other and say, "Can you believe this is what has come of us??" "Can you believe this is our lives from here on out??" It is mind boggling, and depressing.

I am in the worst slump. I have wonderful people who offer to help pattern, great nurses, etc. but all I want to do is shut my door and just 'be.'  I am so tired of everything.

I am sick of the program, I am tired of having food coughed in my face, and all over. I am sick of not being able to go anywhere. I am disgusted that we cannot take a vacation. I am horrified by the amount of cooking we have to do, and that I can't simply just make a peanut butter and jelly sandwich, and get on the road to our nieces softball game. I am sick that Dave and I don't get to spend time by ourselves, but instead one must stay back to be with Avi, and finish up her therapy, while the other goes out.  I am tired of spending every waking moment thinking about keeping Aviana's recovery headed in the right direction. I am tired of preparing materials. Shopping for the endless amount of food. I am sick of spreadsheet among spreadsheet among spreadsheet. I am sad that Aviana can't reach her hand out, and pet our new puppy. I am beside myself that she can't express her grief, and sadness over Kama in a precise manner, and has me guessing and not exactly knowing. I am sick of spending our nights after she goes to bed ordering more hepa filters, more patterning tables, researching and buying water filter, upon water filter for the house. I am tired of supplements. Which comes when? Is it Milk Thistle, or the Probiotic? When is it that I need to take her back for blood work?? Patterning teams make me nauseous. My sacred home as a revolving door, a mess.

Yeah, I get a break, let me go get my head shrunk.

Sacrifice, sacrifice, sacrifice is all we do. Don't get me wrong, I know she's worth it, as this was not her fault. And she is what keeps us going day in and day out, but eighteen months of this is enough to flatten just about anyone.

Crawling under that rock, has never sounded so appealing.

Amish Country

This was the portion of the trip I was looking forward to most.....unfortunately, I was carsick almost the entire day ;o( For that reason, I have very few pictures. Every time I looked up from my backseat refuge, a wave of sickness would quickly arrive.

I learned my lesson, and drove what we affectionately called, "Aviana's Entourage Mobile" for most of the remainder of the trip.

Sadly, there were so many sights that I missed out on.

As a side note...my Mom, Gary, Roger (who secretly decided for Rella too), Dave and I made an "Operation: Move to Pennsylvania Pact."

Once the humidity factor was brought up, Dave and I had to jump ship ;o)

I wanted to uproot and move right on into this one!

You may have noticed, I didn't even catch one picture of a horse and buggy! Those were quite a sight to see, and made the whole trip worthwhile ;o)

Gothic Vampira

I am sorry I am so behind on posting Aviana's Halloween pictures. We were going to be touring Gettysburg on Halloween, so I wanted to get her the perfect costume for the occasion.

Aviana was a Gothic Vampira. She took it very serious, as she was in character all day.  She woke up in this manner, and did not come out of character until the next morning.  You'll see what I mean by the pictures!

We went to the Gettysburg Museum. We thought it was very interesting, but I suppose it was a little boring for Aviana.

Do you see what I mean?

All

day

long,

I am not a mind reader, but I think she was saying, "Please...I beg of you....take me trick or treating!"

Apparently, Abe and I got a little too cozy...

And someone in particular didn't like it! Sheesh Dave!