Wednesday, August 28, 2013

19 Month Life Change Update...And Snot



The top picture is from Thanksgiving 2011. It is hard to believe it was that recent.  As I look back on that picture I realize so many things. For one, my wife is beautiful in every way, no matter what her weight is, but I see a brightness in her eyes in the most recent picture (from today) that wasn't there in November 2011.  It isn't like we were unhappy with life then but we were unhappy with ourselves.  Maybe it is the light in the picture today, but even in person she looks healthier- skin is brighter, mood is more uplifted, and a spark in here eyes.  I sometimes forget about the people from the top picture and I think it is important for me to actively remember them-remember the old me.  Remembering reminds me of the accomplishment- the effort, the dedication, the hard freaking work I have given over the last 18+ months and all of the sacrifice my wife has given me to support me in my efforts.  It is truly amazing. And it reminds me of all the same things in relation to what Jessica has done for herself. And then it brings me back to our family- the huge impact it has had on us as a couple and as parents.  We are an active couple, we are active parents. I know I wont have to worry about being able to keep up with my nearly teen aged daughter- I'm more worried she wont keep up with me!

I'm still trying to figure out how we did it. How we managed to stick it through when we had both failed so many times in the past (both as a couple and independently). I've got some ideas and I'm thinking on it more for a blog post sometime soon.  The best part of all of this is that our journey isn't over!

And then there is snot. Miss Adey Cakes has a cold. Devanne and Jocey haven't caught it yet, but poor Adey has a faucet of a nose and a little cough. She however had a mild temp last night and had no seizures! That is real deal awesomeness right there. Her first terrible, horrific seizure at 7 months was with a very low grade temp 100.3. So, we tend to worry even at the low grade.  But she has been a trooper so far with getting her nose wiped constantly, except the sleeping part. She woke up at 4am when Jocey needed to use the potty, then again at 5:15 (just cuz) and would not go back to sleep. I think it might have been her nose...





Monday, August 26, 2013

Big Belly Go Down

This weekend started off slow with only a few commitments and ended in a fury of "oh crap, school starts in a week and we need to do .....(fill in about a hundred things)."  Friday night we gathered the crew up and headed to PDX for a dinner date with friends. Seven adults, one pre-teen, and six under the age of 8 years old in about 1000 square feet. It was loud for a bit, but we had good food (gluten free pizza!) and spent some quality time with friends.  Saturday morning started early- for some reason Adey is up to her old habits of waking up at the crack-o-dawn- with a trip to the gym. With how busy weekends have been over the last month I couldn't even remember the last time I had been to the gym on a weekend (Gasp!)

At the gym I am trying a new program I found on BodyBuilding.com called Get Swole. I don't even really know what that word means but I like the training. Week 1-4 are full of super sets that completely tear you up. Today, for example:
1st super set: Wide grip pull ups 5 x failure
                     Flat Bench Press    5 x 12
2nd SS:        Incline Bench         5 x 12
                     Seated Row            5 x 12
3rd SS:         Flys                        5 x 12
                     Wide grip pull ups 5 x failure
Dumbbell pull overs                     6 x 12

My back is already sore and it has only been about 20 minutes since I finished this work out.  Anyhow, it is very intense and helping to keep my mind off the fact that my knee has taken me out of the marathon this weekend...

After the we hit up Costco and dropped more money then I was hoping for, but it really is the best place to buy uncured turkey bacon, coconut oil, and toilet paper. Plus I bought a HUGE bag of organic carrots for juicing. Finally it was home to start the cleaning and get the kids to nap.

Jessica spent FOREVER going through the kids' clothes. I think we have enough clothes to outfit an army of small children. We decided our littlest ones do not need any more clothes. (Phew!)  The evening was spend watching the Tooth Fairy with the kids and enjoying some popcorn and then an odd romantic comedy for the adults. I don't even remember the title- it wasn't that great but it was good to hand out with Jessica.  We were up early Sunday, again Adey is back to 6 AM wake ups...took baths and got ready for Church. Adey was able to get her hands on some gold fish while in Sunday school. The teachers watch her so carefully, but she is sneaky. I can just picture what she is thinking in her mind..."as soon as Teacher Mary turns I'm going for it." I once thought maybe she was plotting for world domination- now I know she is plotting for ways to get goldfish while in Sunday school! Well, she seemed to pay a bit of a price for those 3 goldfish- tired, cranky and bloated belly for about 6 hours.  (Her tummy eventually went down).  At dinner she had perked back up and was being hilarious.

At the dinner table she would look at you and then bust up laughing so hard! It was really hard not to completely lose it at the dinner table...needless to say we were all laughing. Miss Adey is turning into quite the class clown. She clearly loves to make people laugh, and it is adorable. I will always laugh with my Adey cakes. Always.  Dinner finished and it was off to bed for the twins. We had planned to spend about an hour going through and organizing our room but Jessica felt like we should check out Devanne's room. Good thing we did. That child has more clothes then I thought was possible. She has a pair of brightly colored skinny jeans for each day of the month. And she has 6 pairs of new shoes. How, some might be asking? Well Jessica and I tend to buy things through out the spring and summer as they are on clearance or we find nearly new stuff at Goodwill. All the things we had found added up to MASSIVE amounts of clothes she has never worn.  (Phew! Again)

By then it was late but we have been addicted to watching private practice so we watched a few of those episodes and then called it quits for the night. All to wake up bright and early for this packed week!

The gold fish incident got me thinking though- it was a good thing she got her hands on them- because we could actually see what happened to her. And we can't expect that she wont ever be exposed or accidentally get a hold of some. It just re-affirms the importance of our decision. 



Wednesday, August 21, 2013

Dresses and Hope


This picture was taken today- it is truly an amazing picture! For first Adey wanted to put on the dress, second she let Jessica put it on, third she held the doll, and finally she posed for the picture! To be honest when we first found out we were having twins I imagined many, many more pictures like this. I mean who thinks-who wants to ever think- they will have a child who doesn't follow the usual learning/growing/development curve. I certainly never considered it.

Because Adey is who she is she, usually she can not tolerate all of the sensory input and processing required to play dress up (or hell- there for a while it was getting dressed at all). Last year she actually stopped refusing to hold hands with Jessica and I, this year she will actively reach for our hands; last year it was a nightly torture chore to brush her teeth, this year she will actually open her mouth to have her teeth brushed.  We are starting to see some of these issues melt away. For a LONG time Adey would refuse to hold an object in each hand. So even the fact that she is holding a small ball and the doll in the picture is a huge success. 

I went from being in a position of never thinking my child would have a disability, to considering she may never even be able to sit still to listen to a book or play with her sister... and now this picture, this moment in time. This picture gives truth to the hope given to me.



Tuesday, August 20, 2013

Wrapping Up Summer


Summer is wrapping up- school starts in two weeks! All three of my girls will be in school. Devanne will start her first year of middle school, Adey will continue to go to Early Intervention (2 days a week) and Jocey will start a private Christian based pre-school (2 days a week, 3 hrs each day).  We have been gathering school supplies and school clothes over the last few weeks, no doubt these kids will be prepared for the new school year.

For Jessica and I, well mostly Jessica it will be a school year of carting kids around to different activities. Weekends will center around soccer games.  Devanne already has soccer 2x a week and will soon have weekend games and Jocey will also have soccer 1x per week. Jessica and I will be coaching Jocey's team. I haven't EVER played soccer but I imagine for 3 and 4 year olds soccer practice may feel a lot like herding cats. When I coached Devanne's T-Ball team it certainly felt like that.  Even still it was a lot of fun and I suspect this will be as well.

We spend yesterday evening at the park, which turned out to be the most memorable park trips of our lives. Adey walked nearly a mile to the park and then she met a friend, a little girl who was probably 2 years old. She did not speak English, and Jessica said it was a match made in heaven because Adey doesn't speak much (understandable) English.  They gave each other the stair down, Adey waved and said Hi. And then they proceeded to climb the stairs to the play structure together and go down the slide together, laughing. They did this several times, each just looking at one another and laughing. It was the first time we have really seen Adey play WITH another child. Not just next to, but interacted and responded to another child. It was amazing.

It reminds me that for us, as adults we don't always have to have the words to be successful. We only have to have the hope and the will. The way will appear.



Monday, August 19, 2013

Backpacking (again) and Updates...



This last weekend Jessica and I (plus our dog and excellent friends Lauren and Tyrone) set off for an adventure. Indian Heaven Wilderness Part 2. We left town about 8 am and hit the trail head about 10:15.  We started off and immediately I noticed the Huckleberries were ripening! I encouraged the crew to stop and try a few.   About .75 miles in we hit our the first of 7 lakes.  We headed up trail number 111 towards Blue lake.  We ascended approximately 1000 feet over 2 miles before we arrived in the meadows for the final 2 miles.  Our dog, Roxy, at age 12 struggled to keep up. At some points I carried her (she is about 60 pounds) to give her back legs a rest. Never the less she seemed to enjoy being in the outdoors. Once we arrived at Blue lake we noticed the tucked away campground was taken, but the big central camping area was available. We set up shop. We had a beautiful view of the lake.   We discussed going for a hike, perhaps back to the peak Tyrone and I had been to about 3 weeks ago- it was going to be about 6 miles there and 6 back.

So we headed out but decided to let Roxy stay back at camp because she was in no shape to go with us. We followed the PCT through forest areas, along a ridge, past Junction Lake and past Lemie Lake Trail. It was about that time the girls were showing fatigue, it was about 3:30 (we had been hiking about an hour) so we decided to head back. Round trip we did about 6 miles.  The evening was spent by the lake (it was a little chilly but I put my legs in) and then we built a grand fire, drank some whiskey and made our dinner. We talked for hours, enjoying the company, got out to a clearing and did star gazing. It had cleared up so the stars were popping out.

The next day we got ourselves up (it was very chilly and windy but blue sky) and packed up by 10 am.  The hike out was suppose to be easier since it was mostly down hill, but for me it was terrible. My knee has been giving me problems and the down hill was torture. My old dog was going fast then me. Never the less we made it back to the car and hit the road at 11:30. We took the scenic way home and enjoyed our time.

It was an excellent weekend and I was happy to be home and see my kids.  Before the kids got home we did our grocery shopping for the week. Jessica has some awesome menu items in the works, I can't wait to eat them!

We continue to see improvement and benefit from the Gluten Free diet in Adey. She continues to have excellent energy and has even began taking her medication without hiding it in her milk.  For example, last week we took her to the park post dinner and she was more active then she has EVER been at the park. It is truly amazing to see all the progress she has made in the last month. 

Last week we received a call from a doctor in California, he didn't leave a VM but we thought it might be related to the Mito testing. Jessica was trying to stay calm but I think emotions got the best of her and she was very anxious about finding out what was going on. After a few calls she spoke with the nurologist's nurse, who told her that we would have to come in for the results. Jessica, about this time, started to freak out. She called me and was really struggling- why would they make us come in? The mind goes to the worst possible situation. She was terrified. I tried to offer support and a more positive perspective but I was equally as terrified. Thank goodness she was able to track down the actual doctor who gave us the proper information: half of the testing for Mitochondral disease had been completed. She does NOT have some of the more common, perhaps more detrimental forms of mito. They are still looking at the more rare, but perhaps less devistating forms.   The genetics doctor who thought it might be a good idea to have us come in and see Adey and get a more complete history, not to tell us the results of the testing. It seems like regardless of what comes back from these tests the general concern that she has some sort of cell energy issue. I'm thankful that we have medical insurance and people who really do seem to want to figure out what the heck is going on. The waiting sucks. The waiting is taxing. The waiting...I just decide to continue to focus on hope, the hope that we can help by the having her eat the right food and the hope that we will be able to take her off of her medication.



Wednesday, August 14, 2013

Backpacking trip

 
A few weeks ago I was able to get out with some of my guy friends and enjoy the wilderness. This is the first planned trip away from my family in the last 5 and a half years...

I began to believe that I needed time away from the busy of life, I needed to get rough with nature and enjoy something beyond this world.   I came up with a plan to invite some good guy friends and have a guys weekend backpacking trip to the Indian Heaven Wilderness in Washington. I had been there once before but not for the type of epic trip I was planning (little did I know it would be far more epic then I could even imagine). The plan was to do 16-20 miles of hiking over 3 days/2 nights. We were going to start from the Cultis Creek Campground and planned on seeing about 20 different lakes.  Sean, Jake, Tyrone, Paul and myself hit the trail head about 11am.  My pack was probably about 70 lbs, I suspect everyone else had similar weights on their backs...  The first .75 mile was brutal- 1500 feet accent. It felt straight up.

 The effort to get up there was well worth it- above is the picture from the first view point.  From there we followed the trail across some meadows and passed several lakes. We stopped about 7 miles in at Blue lake for our first night of camping.

 
We were able to snag a secluded site tucked behind the lake. We enjoyed the lake for a few hours (it was very cold!) and then settled in to make a fire and enjoy some dinner. My family had already been gluten free for nearly two weeks so I continued the trend while backpacking. Dinner was rice noodles, beef jerky and seasonings. It was delicious and the first cooked meal I had had all day (lunch was trail mix and jerky).  We stayed up fairly late enjoying moonshine and whiskey.  The next morning we anticipated hiking about 8 miles so no one was too worried about getting an early start of it.
Breakfast was GF oatmeal with nuts and Chi seeds and coffee.  We then got our stuff together and headed out. Our plan was to go down to the Indian race track and over to Thomas lake. We soon realized as we began hiking that the trail to Indian race track was difficult- a lot of ascending. We found our selves at the top of a beautiful ridge, able to see 4 mountains.
It was really, really beautiful. And, as I realized that night it was exactly what I needed.  As we continued on we realized that the trail ended- there was no trail to Thomas Lake- we could take a gravel road or bush wack. Or turn back. We decided to take the gravel road. It felt like the road went on forever.  At this point the GPS read we were about 9 miles in. Finally we reached Thomas lake and stopped for lunch. We were all very tired and we voted to keep on, trying to get to Placid lake so we wouldn't have to hike for 10 miles the next day. Well, turns out there wasn't a trail to Placid lake either (the trail lines on the map were actually boundary lines, but I didn't catch that).  Luckily there was a cut through trail back to Blue lake. And so the 5 of us sauntered, sometimes just barely making it one more foot all the way back to Blue lake. We actually camped at Blue lake #2 because all the other spots were taken...

So, we spent our final night here. My feet were BADLY blistered (It has been two weeks and I still can't wear regular shoes), we were all tired and I was out of moonshine. But we all slept and then mustered the energy back to our car. Day 3 felt a little crazy- we ran some of the trail, just to create excitement and get home a little faster. Eventually we did make it back to the car and to our families.

Overall I think it was exactly what I needed. I pushed myself to keep going, even when there seemed to be no other options, or at least the options that were available weren't what I had planned. It was a little reminder of the real life but I was able to take in the beauty and remember that all the things happening back home- with work, family, etc- still happen in this beautiful, amazing world which is such a gift.

This coming weekend the kids are going to grandma's house so Jessica and I can get out of town. I have convinced her to come backpacking. We have also invited Tyrone and by best friend Lauren. Our goal is to take the 5 or so mile hike from Thomas lake to Blue Lake. My hope is to soak in the time with my wife and let my heart be open.

 

Monday, August 12, 2013

Healthy Parents, Healthy kiddos

(Thanksgiving 2011)

(Sometime before)
 
For as  long as I can  remember, Ive had pretty  unhealthy  habits.  I  started smoking  when I was 13 or 14... I knew it was  unhealthy  but I wanted to be cool and then it  progressed to being a major "stress reducer" for me. I have never had a formal exercise routine... working was about all the exercise I thought I needed. I have always eaten fast food like it was going out of style. I felt like I didnt have time, money, or energy to do much else. When I was younger,  it didn't affect me. But during my first pregnancy, I gained 70 lbs. I realized that hormones change and that the weight wasnt just going to fall off like everyone said, but subsequently my self esteem took a plummet. That led to a cycle of more unhealthy behaviors. I smoked more. I ate more. I exercised even less. Every year, mostly on New Years day, I would start some fad diet, and I would lose weight in the first week but eventually I would go back to the same unhealthy habits. At one point in my life I was literally eating fast food 3 to 4 times a day, smoking a pack of cigarettes, and taking in about 80-100 ozs of my worst enemy, Dr. Pepper. My daughter started gaining weight when she was about 7 or 8 and I didnt really see much of a way out. When I met my husband and we started dating, 6 years ago, he was a vegetarian. As we started spending more time together, I got excited to cook new and exciting dishes for my newly formed family. I quickly started eating at home most everyday.

When Josh moved in with Devanne and I, he started eating meat again. I learned to love cooking. Chicken fried steak, bbq pork ribs, juicy bacon cheeseburgers... yea, our eating out subsided a lot but it was less than healthy. Im pretty sure in that first two years, I gained at least 20 lbs and he gained about 40. We started trying to have a baby. I made my first real healthy step in my life... I went from smoking a pack a day to quitting cold turkey. It was probably the worst first month of my life but I finally did it!! My ob doctor told me that if I would just lose some weight, my cycles would probably regulate but I wanted the quickest fix, so we started on fertility meds. First shot, we got pregnant with our beautiful twins. During my pregnancy, I really started thinking about how our unhealthy habits were affecting our older daughter and how they would soon affect our little ones. It was a very close call that I did not have gestational diabetes. I attempted to make healthier choices by switching to diet pop and eating more protein with my carbs (just learning what protein and carbs were was a big step). I ended up only gaining about 20 lbs with my pregnancy and losing about 30 in the first two weeks, post. I was determined to make better choices with my babies and for the most part we did. But that didnt stop me from binging at night and during naptimes... the kids couldnt see me, so that was better, right? By 2011, my husband and I were the highest weight we had ever been. We had tried and tried and tried to lose weight (every new years), it just didnt work. We had such a give up attitude that we didnt even attempt to try a new years diet in 2012. On January 2nd, we woke up feeling sick from all the good food we ingested for new years. We looked at each other and both said  "somethings gotta give." We decided not to get real excited about it just to a little at a time because lets face it, we are probably going to quit anyway.

At first, we didnt even exercise. We poured ourselves into learning how to eat  healthy diet. I didnt want to do any fad diet. By this time, our 11 year old and 1 year olds were aware of what we were doing and I didnt want them to see me eating chicken breast every night. I didnt want them thinking that that was the only way to be healthy. I searched high and low for healthy breakfast, snacks, lunches, and dinners. I tried to make things that the whole family would enjoy. I started teaching  them and myselves about what vegetables and fruits, and proteins did for our bodies. we starting eating whole grain bread and brown rice. We tried new things like quinoa and cous cous. At the end of january, I had lost maybe 10 lbs, Josh, maybe 15 lbs and Devanne, was looking slimmer and slimmer. People started noticing our changes. This was about the time in other years that we said it was way too hard and quit. This time we got a gym membership. At first, josh and I couldnt go for longer than 30 seconds on any machine without feeling like we were absolutely dying. We just kept going. It felt amazing. In that first 6 months, Josh lost about 50 lbs, I was down 40 and our own beautiful daughter was down 10. I went from having pre diabetes, high blood pressure, and extremly high cholesterol to completly shocking my doctor. Devanne was able to stop taking her inhaler for exercise induced asthma. Josh looked and felt amazing! It has been two years since we changed our lives around, and Since we decided that enough was enough. I still exercise 5 days a week. We rarely eat out.Devanne is the most active teenager playing 3 to 4 sports a year. Josh is training for his first marathon at the end of the month. The twins are perfect in every way. We literally changed our whole family's life.

With all that being said, it was HARD! After that first 6 months, it got tough to lose weight and I gained some back even. Josh had been the same weight for over a year now.Josh especially had a hard time with this. He wanted to do anything he could to keep going... low carbs, detoxes, etc. I wanted to completely quit altogether and did for a few months. But he supported me mentally, physically, and emotionally this whole two years and I  reminded him why we started doing this in the first plce... for our family. I never want my kids to grow up and think the only way to stay "skinny" is to eat a chicken breast for dinner evey night, or that baked potatoes are the enemy. I dont want them to think that popping pills or drinking a "miracle" drink is the way to lose weight. I dont even want skinny or fat to be im their vocabulary. Being healthy is a lifelong goal. Living  long and happy lives are the ultimate goals. So we continue on the slow path. My kids eat fruit "pizza" and broccoli and cheese potatoes. They eat hot dogs and (gf) mac and cheese. And most of the time, I eat it right along with them because thats how I want them to see us. I want them to watch me go to the gym and cry after because it hurts. I want them to see me take a day off to go to the zoo with them instead. I want them to see me struggle and succeed. I want them to think healthy is normal. I want them to look back and thank me for all the work I put in for not only myself but for them. Its a work in progress, but then again it will be until im cold in the ground.

                                                         (Adey's Army Walk June 2013)

Sunday, August 11, 2013

Family Juicing

We have changed so many food habits in the past few years that it is hard to explain it all;  but since becoming a  gluten  free  family,  the  changes have become  even  more  healthy  and  natural.  In the  last  month,  we have been  focusing  on natural,  organic lean  meats,  Organic  fruits,  and  organic  vegetables.  This is a huge change  from  our  healthier  but  highly  processed  diet.  Whereas  before  we focused  on  whole  wheat  breads,  noodles,  and  quick (and cheap)  additions to meals  such as  canned  vegetables and fruits,   now  we are  doing  more  fresh, all natural foods. Summertime in the Northwest enables us to do this easily and not much more expensive. We have been hitting  up  natural  food  stores,  farmers  markets, roadside stands, and searching the outside aisles of our local grocery stores for yummy meals. One of the biggest challenges of having 3 year olds and a 12 year old is getting in the amount of veggies and fruits need especially when we are cutting out the highly processed crackers and grains they were having for additions to meals. Additionally, our naturopath and neurologist  suggested a whole list  of supplements (a whole other post!)  to add to Adeys  diet  in order  to  reduce  inflammation  from  gluten  and regulate  her  poor  digestive  system.  All  these  things  have  led  us  to  making  daily smoothies  for a  replacement  to their past afternoon  snack.  For the last  two  weeks,  we have been mixing protein,  complex carbs, fats, and supplements  into a  yummy  smoothie that all three  kids have  been  enjoying.  Low fat, organic milk, greek  yogurt,  protein  powders,  bananas,  frozen  blueberries,  spinach, kale,  tomatoes,  coconut  oil,  fish  oil,  and  pr obiotics  are  just a  few  things  we have  been  experimenting  with. Miss Adey  hasbasically  l oved  each  and  every  concoction  while it's  been  more  hit and  miss  with Devanne and Jocey. While we have noticed a huge improvement in Adeycakes, we have noticed that her tummy seems to be a bit distended still which makes us think that all the dairy she is consuming could be contributing to the inflammation. So starting this week, we will be experimenting with a little dairy diet for her. We arent going to be very strict. She will still have little amounts of organic cheese, just because she doesnt eat much in the first place but we are going to switch out the greek yogurt and milk for almond milk. She doesnt mind, so hopefully we will see an improvement.

Ever since Josh and I watched the documentary, "Fat, Sick, and Nearly Dead"  we have  been  discussing  how  juicing  can  become  part  of our  lifestyle.  We  have a  pretty  strict grocery  budget and I always  felt  that it would  be way  to  expensive  to even  consider. After seeing how much the kids enjoyed the smoothies and considering how dairy may be affecting Adey, we decided to give it a try. After borrowing a juicer from our amazing friends, Holly and Josh and taking a very expensive grocery shopping trip, we attempted our first family juicing event today. All the kids joined in and we juiced a combo of  cucumber,  celery,  tomatoes,  apples, plums,  kale,  beets,  carrots, and lemons. Adey was in hog heaven! She drank an entire  sippie  cup  in about 5  seconds  flat.  Jocey  took a bit  more  convincing  but after giving her a spiffie straw,  she drank  her while  glass  too!  While our weekly  grocery  shopping  trip  was about $100  more  than  what  we have  been  spending, I  did  not expect  the  produce  to go  so far. We still  have a  ton  left  and we juiced an entire  pitcher  for the  next  couple  of days.  I  think after I do  some research,  I'll be able  to find some  cheaper  juicing  options.  Overall,  it went  great  and were  excited  to  see  what  the  non  dairy,  raw  juice  will  do for Adey (and the rest of us!)  during our  next  two  week  trial.


Friday, August 9, 2013

Food Snob?

I have never been a food snob...Organic? No nitrates? No preservatives? Non-GMO? Nah, just grab the cheapest option and lets get out of here. Well, until now. The more I learn about how important food is, the more I am dedicated to spending the extra money on whole foods (and some "as natural as possible" processed) which come with the seals mentioned above. We need food and water above all else, how did I go this long without really considering the STATE of the food I was consuming? At the moment I am not a very good food snob. I was glancing through a book about Paleo eating yesterday and learned some interesting things about marketing and terms related to food. For example: Eggs can carry the label “cage-free”, “free-range” or “certified organic” and still not be “certified humane.” farmers can not give hormones to chickens, so anything labeled hormone free is BS- it's illegal. Not only am I changing my views on food but it seems we, our family, is making an impact on others. My wife posted this comment related to a picture of GF, organic lasagna she made yesterday as the comments rolled in about our food budget and eating habits: It's hard. Do your research and start out with small changes. 6 years ago, Devanne and I were eating fast food 3 times a day. I almost never cooked. And our health suffered. Slowly I started learning how to cook and enjoy it. Almost 2 years ago, my husband and woke up and said enough is enough. We were both overweight. Devanne was overweight. I looked at my babies and didn't want that for them. It's been a long road and we definitely don't have the perfect diet but every single cent is worth it. We are not rich. No where close to it. My husband is the sole breadwinner and thinking about spending 25% of his income on food was hard. But the fact is Devanne is now healthy. My 3 year old can recite almost every vegetable in the store along with what it does for you. My other 3 year old had the chance to live a normal life, something that hadn't seemed possible before because of food. It's important to me. I refuse to let my kids grow up ignorant to one of the most essential things we put in our body. What is truly hilarious is the fact that my wife literally ate fast food 3 times a day and drank, oh say, 80-100oz of Dr. Pepper (not diet) before I met her. May it was just that she didn't have the tools or the time. I was a vegetarian and at the time was the smallest I had been in years (205 lbs). Gradually we morphed- she did start cooking meals at home but we also ate out ALOT. I gained 40-45lbs in a matter of 3 years. I don't think she gained that much but she recognized her health, the state of our family’s' health, was suffering. So many times we tried to diet, but it just did not work. Somehow we found a way over that hurdle on Jan 2nd 2012. Today we are a GF family for our daughter, Adey. I actually think Jessica has a gluten intolerance as well because she has noticed much better sleep the last 3 and a half weeks. Adey is truly benefiting from the diet change; it is really a miraculous thing. Her sleep is better, her skin is better, her language has picked up significantly, her understanding appears better...We have noticed that her belly still appears slightly distended but our thought is that it may be due to dairy- she has been having a lot of milk based things- milk in the AM and PM, keefer/greek yogurt and then a milk based smoothie in the afternoons. Milk is on the inflammatory side of things, so our naturopathic doctor recommends we cut it out. It is, however, Adey's FAVORITE thing to drink. I think she would probably like to bathe in milk. She just loves that stuff. Anyhow, we will test out Almond and Rice milk this coming week. Also, we are borrowing my good friend's juicer for a week or two and will be giving juicing a try. I am so excited, I have wanted to try juicing since I watched the documentary Fat, Sick and Nearly Dead. It is a fantastic look at what food can do for the body, mind and soul. Like my wife said, we aren't rich, we aren't poor either- we are actually pretty broke because of stupid money decisions made earlier and because right now we are spending a pretty penny on food. But it's worth it because we are what we eat. When we eat natural and organic foods we will live longer and be able to share in more amazing experiences together. That right there, folks, is priceless. On top of that my baby girl, Adey, is going to have the opportunity to be ALL that she can be. NOTHING is better than knowing my decisions and spending is giving her that chance. Josh

Wednesday, July 31, 2013

Why?

Why start this blog? Well, my family and I are in the middle of a constant crisis that has been brewing for the last 3.5 years. It all started when we decided to have another baby. Instead of one baby we were blessed with two! A twin pregnancy, for my wife, was difficult. We nearly lost them very early on, then again around 21 weeks. But with good medical intervention she kept them safe until 35 weeks 5 days. Both were born small but healthy via c-section. Baby A (Jocelyn) had to return to the nic-u for a week due to feeding problems while baby B (Adelyn) rocked eating. Once everyone was home our family of 5, we have an older daughter- Devanne, settled in to a new routine. Fast forward 7 months...Hands down scariest moment of my life. Adey just seemed off, we took her temp- it was 100.3. Her body stiffened, she just starred in to space and turned blue. My wife called 9-1-1 while I administered CPR. EMTs arrived, her O2 stats showed 65%- my wife jumped into the ambulance with our precious daughter-they raced to the nearest hospital. By the time I arrived at the hospital there were literally 20 doctors in her room. She wasn't blue anymore but she was not responsive. They were poking her left and right-she didn't move. They gave her a cocktail of medication. Doctors explained she had had a seizure, likely a complex febrile seizure. She was stabilized and we were transferred to the local children's hospital. We were there for a week while they tried to figure out what was the cause of the fever. Turns out baby girl had a UTI. Turns out she had kidney reflux and would need to be put on daily dose of antibiotics to keep her from getting constant UTIs. She was also given a short term prescription for medication to prevent seizures. Then she had another "complex febrile seizure" and was placed on long term medication- Keppra. When we returned home our precious daughter lost some of her developmental milestones. She seemed fussier, irritable and wasn't hitting the markers. At 13 months the doctors told us she didn't have a seizure disorder- just complex febrile seizures. Given that we thought "what the hell is she doing on seizure medication if she doesn't have a seizure disorder!" When she ran out of her medication we didn't refill it. I mean, she didn't have a seizure disorder, so...well that was a WRONG choice. She began having myoclonic seizures in clusters of say 20 or 25. We spend the weekend going to the ER because it wasn't right, but the doctors still didn't think she had a seizure disorder. We finally planted ourselves in the Children's Hospital ER. We weren't going to leave until we had a video EEG and an answer. We eventually got that and they were able to capture her seizure events. She did have myoclonic epilepsy. We weren't crazy. Fast forward 2 and a half years. We have had 4 sets of ear tubes, adenoids taken out, more complex febrile seizures but never have seen myoclonic seizure since 13 months. Adey is severely delayed; recently she has started to have facial drooping which can't be explained. She has sensory issues, very little speech, motor delays, blah, blah, blah. We are currently waiting for testing to come back to see if she has a form of mitochondrial disease. We were devastated when doctors, during out last hospital stay, felt strongly that she needed to be tested because there seemed to be nothing else to explain her global developmental delays and other medical problems. We had to get our neurologist to order it and then it took WEEKS for insurance to approve the request. But, given what I have read about others, our 6 week wait was nothing, so thank God it happened that quickly. We were devastated at that possible diagnosis because we read about it on Google. You see my wife goggles everything in life. Granted, in reality 1 out of 4000 children have a mito disease; there is a spectrum of disorders which range in severity. But as anxious parents and Google highlighting the worst of the worst- all my wife did was sob for days. I pray, if she does have a form of this that it is a lesser form. We are waiting for the test to come back, 3 weeks 4 days until we might get the results. The amazing thing is that everyone around her picks up on her sweet personality, her caring nature and lovable smile. She has red hair, which EVERYONE comments on. I mean EVERYONE. People often tell me there is just something about her, something special in her eyes. We see it too. But all of that isn't why I feel it is absolutely necessary to write this blog...To some this next part will make me sound like a crazy person (I know because I work with people who have mental health issues). To others, they will see it as a testimony of the amazing work God does. I was sitting in church recently and a profound feeling enveloped me. I had a thought/I heard a voice telling me that our family needed to drastically change our eating habits. I was sure if I told my wife this she would consider me in the crazy category. But I approached her with my experience. Usually when I bring crazy sounding ideas to the table she lets me know. But she sat with this for a while. We discussed it, what eating habits we would change and both felt equally invested in going Gluten Free. Adey has many of the symptoms of gluten intolerance and gluten ataxia and we had previously gone off dairy with no change. We started a two week GF diet for the family. We saw immediate results for Adey. Not just us, but her pre-school teachers noticed her energy level go way up, sleep at night was much better, skin improved and she was talking up a storm. The only way to know for sure if GF was the cause of all these changes was to introduce gluten back into the system. We headed to red robin and gave it a go. This was a very, very bad idea. The next day she woke up with a 104 degree temp, cranky, tired, distended belly for NO apparent reason. Doctor confirmed no ear infection or UTI. The doctor thought it could be related to gluten, but wasn't convinced. Jessica and I both knew the Gluten was attacking her body. Historically her body has a way with over doing it in relation to reactions. When she gets sick, she gets SICK. A simple cold can bring on a 2 or 3 day hospital stay. This re-introduction of gluten caused a trip to the ER in an ambulance, 2 IV bags of fluids and blood work. ER told us she has a virus. It also happened that Jessica had a crazy bad headache the day after eating gluten and tummy problems. Today my wife took Adey to her biannual neurology appointment. This was her summary of the appointment: So... I walk into this doctors appt with a paper filled with notes ready for the doctor who I find to be more than annoying and downright snobby to tell me that im basically a kook. He walks in and tells me that he’s sorry he’s late, he’s just trying to get caught up on all that is going on with her and before he could in...terrupt me, I go into an entire speal regarding gluten free diet and all her symptoms. He stares at me. When im finally done, im almost crying because im just sure he’s going to roll his eyes. He looks at me and says that I have more tenacity than he has ever seen before and that he admires all the intelligent research I do. He goes on to say that he had only had one medical nutrition class his entire career (this is one of the top neurologists in the state) and he has talked to hundreds of peds, gi specialists, and fellow neurologists who know nothing of gluten insensitivities and that’s about to change... with me and Adey. He’s 100% on board with going gluten free. He still believes she has a mitochondrial energy problem but it can be cured with her diet. He mentions that she has had completely normal eeg and mris... he wants to wait 6 months for all the gluten to leave her body AND THEN WEAN HER OFF HER MEDS! Lastly, he is inviting me to his annual grand rounds with.neurologists and doctors from over the states to talk about our case. I cant stop crying. I cant start processing all the emotions I have right now. But for the first time, I look back at my baby in her car seat and I have 100% confidence that she’s going to be alright and that my friends, is what I wanted a chance to have since she was 7 months old. We have to get the word out about this, I KNOW there are other families out there who are struggling. I also know that going gluten free wont solve all of our problems, but I know that taking a very careful look at what we put in our bodies can only help. So this blog will be about our lives, our family. What we do, what we don't do. In the kitchen and out. Welcome to the crazy moments I call life.