Train Wreck

Have you ever experienced one of those moments where your whole world suddenly takes a giant turn in a completely different direction? Mine came last week in a phone call regarding my father.

Last week he was experiencing a kidney stone. The doctor sent him for an ultrasound to take a look and what they found, besides the stones, was an abdominal aortic aneurism that is about 2.5 inches in size. They immediately scheduled a lot of tests for the following week to determine the best course of action to repair it.

Then over the weekend he passed a stone and had a lot of bleeding that lasted for days. Back to the urologist, in between other appointments and they took a look and found that the stone had lacerated a mass in his bladder. They sent him for a CT scan. Sure enough, he has a 'cancer-looking' mass in his bladder.

So now next week there are still more tests and decisions on all issues to be made. I am flying up there Tuesday to help out. I just hope they don't find anything else with all the poking and prodding.

My folks are in good spirits but understandably stressed and worn out from all the running around to different tests. I will be chauffer (how do you spell that?) cook, waiting-room sitting companion, and recipient of many bad jokes.

And speaking of bad jokes, Levi made this one up for his Grandpa.
What did one banana call the other banana?
Bananeurism!

Reality...it's what's for dinner

If you know me, then pretty much what you see is what you get. I try and put a positive spin on things, but I am also quite honest about the issues we face. I would never, ever want someone to read this blog and think "Wow, she has it all together. I hate her!" I am so far from all-together that I would have to cross an international date line just to see it!

Reality. Hmmmm. Our reality is that we have more than our fair share of doctors appointments, therapy appointments, medications and interventions. Would I change anything? Not for the world. As I see it, these kids are the ones God gave me and they are mine, warts and all. It's up to me to help them be the best they can be in life and spread a little good throughout their own lives.

Reality. I yell too much and yet no one ever seems to hear me. Getting their attention is impossible at times. Sometimes I get so mad I have to walk away and do something else. I wish I was always calm and regulated so that THEY would be more calm and regulated, but it is what it is. I keep trying.

Reality. When we perform 'therapeutic parenting' are we really helping or are we enabling the traumatized child to continue in his destructive patterns? Should we set the bar higher, expect more from him, push him to stay within the rules like everyone else is expected to? Lately, since he has started school, I have been increasing our expectations of him and he seems to be responding well. I had to get tough on the teachers at school. They were giving him extra chances, rewards when he really hadn't earned them, and giving him special treatment. I understand why they did it. He is adorable and sweet and life hasn't always been fair to him, but it made him worse! He is so smart and manipulative that he took it and ran with it. He also acted up more at home where the rules are black and white. Everything here has a guaranteed consequence, good or bad. When school was full of gray areas without clear consequences, he didn't feel safe and began acting out in all sorts of lovely ways. So for now, our expectations of him are set high and we show him how much we KNOW he can do it. No excuses. We'll see how this works in a few months.

Reality. I can't take very many pictures in my house without a pile of something showing up in the background. Clean clothes, toys, newspapers, etc. I am beginning to feel like we just might be hoarding-wannabe's. Check back ten years form now and there might be 9 tons of garbage in my house and I will have adopted 37 cats and have no running water. Yikes!

Reality. Financially this was a tough month. Ashley got braces, my car needed a ton of work and new tires, there was a tuition payment due for Kaytee all on top of the normal expenses. I think I might need to sell a body part or two. Hah!

Reality. All of our grass died in the severe drought and now that it is raining again, all we have are weeds. They look pretty good when mowed, but most of the time it looks terribly ghetto. We got a letter from the homeowners association about our lovely lawn. I'm afraid if we put down weed killer we will just have dirt left. Maybe we could just paint it green.....

Reality. I haven't showered in two days, shaved my legs in weeks and can't remember when I last had my hair cut. Spending time and money on myself always comes last. I am kinda scary right now. I did brush my teeth, though!

Reality. It kicks my tail daily.

Diet Fail

I was sure that removing the allergens from Ahren's diet would just be a matter of reading the labels and being careful. Um, yeah, apparently I was waaaaayyy off on that one. I find a product that does not contain wheat, but it has soy lecithin. No soy? It has modified food starch which comes from wheat. No starch? It contains soy oil. At this point I can feed him bananas and raw potatoes.

Breakfast has turned out to be the easiest meal. Bacon and eggs, rice cereal with bananas and milk, wheat free home made pancakes with real butter and syrup. Lunch is a struggle. Today he had chunks of cooked chicken, cheese, an orange, and corn chips. Dinners will be OK as long as I cook from scratch. I just have to make time to cook on the weekends and have things ready to heat up quickly.

The biggest stumbling block? Snacks and little things. Yogurt has 'natural flavoring' which can contain strawberries or wheat. All snack crackers we normally choose like wheat thins, goldfish and cheezits are off limits. Fruit chews are suspect. I did find some yummy pretzels that work, but i also found some other crackers made with spelt....and then I discovered spelt is an ancestor of wheat and has to be avoided. We have no idea if he is allergic to other nuts so at this point all nuts are out. No nut butters, no nut oils, no nut anything.

Next week is Valentines Day. I am scared to death of all the goodies and candy. I will send him with his own goodies and treat bag, but I have to trust the adults in his classroom to make sure he doesn't eat a cupcake or drink a juice box that has strawberries. At this point his worst reaction has been an extreme asthma attack, but that is bad enough. His reactions to the allergens can get worse initially as he starts treatment so we have to get this down before that point.

How do people do this? I need a freakin Excel spreadsheet to track what he can and cannot eat. I will need to put a list on my phone to reference at the store. Right now it takes me 30 minutes to find 3 items that will be OK. Thank goodness I have some awesome friends who are helping me! Thanks to Elle, Gayle and Meredith. You all are saving my son and my sanity. I owe you a million hugs and a lifetime of chocolate and wine!

Pictures and Updates

Two freshly bathed brothers snug in the chair. Most of the time they love each other. 

Mr. Handsome Young GQ, ready to head to school. 

 In January we celebrated Ahren's 6th birthday. He chose a Kung Fu Panda cake. We also ate a late breakfast at a restaurant, went bowling and opened presents. Unfortunately, 20 minutes into bowling Ahren was too tired to continue and just watched after that.

 Blowing out the candles!

There are many dead trees all around this area with lots of branches falling on the ground. I have been sending the boys into the edge of the forest with a wagon to gather wood.We have been having bonfires and eating hotdogs and marshmallows. Ever since we did this in Missouri at Uncle Randy and Aunt Carla's house, they have wanted to do this every weekend.

 Each boy has to have a big fire-poking stick, which inevitably ends up on fire itself. We have to watch the boys closely or they will suffer the same fate as their fire-poking sticks. (catch on fire)

 Of course the dogs have to be right there in the fun. They are just smelly 4-legged boys!

In January we also celebrated Seth's second Gotcha Day. He asked for a race car cake, so I looked on line and then went with this idea. Unfortunately I had less than 2 hours to bake, cool and decorate the cake before we celebrated. It is pretty messy, but he loved it. Plus it tasted really good!

We were getting ready to put away Christmas decorations and had the empty tubs out. I turned my back for a minute and discovered Scuba Steve in my tub!

That was nothing compared to what i found in my bed one morning after I took my shower. Who put the ugly kid in my bed???? On my pillow????

Seth was Star of the Week at school last week. It involved a little blue bear spending the weekend with us, our having to document the festivities, write about the weekend and make a poster about it. (I swear teachers don't have a clue what a weekend in our house is like. To accomplish this assignment almost killed us)

Playing legos with Little Blue.

 Watching TV with Little Blue, Ahren and his bear Little Brown.

Playing with Bogart and the bears. Poor Bogey is not sure he likes bears this much.

The boys invented some sort of game where they all dress up and run around our land with toy guns. We watched them the other day and laughed and laughed as we watched them run across the field in formation then suddenly hit the dirt and point their weapons at the sky, then jump up and run and hide. They played for hours. Ahren came in to take a rest but did not break character.

Visual learning and the young/special needs child. Small children and those who act younger due to special needs can really benefit from visual learning. I decided to try it out on my three boys to help avoid the frustrations we have been having getting ready in the mornings. Honestly this was driven by sheer desperation. I was ending up too fried by the time i dropped them at school and was really tired of repeating each command over and over again with no results.

I spent one morning inventing charts that detailed each step of our routine. I added an image of the time on a clock with the time printed out, then pictures of the individual chore to complete in that time window, a short description of the chore, and then velco dots where they move the image of themselves as they complete each item. Each morning I wake them up, then just call out the time and remind them to move their person. We have done this for one week and I can say that for Seth and Ahren it is working beautifully. they LOVE following the chart, moving their person and completing tasks. Levi isn't much interested in it, but he never really was the problem. he gets himself up and dressed each morning without any problem. I am keeping my fingers crossed that the charts continue to work miracles.

Birthday Boy

Seth is now officially 6 years old, and for 2 months he will be 'older' than Ahren. As usual, we managed to drag the festivities out over several days. The weekend before his birthday he got to have a friend over for the day. The friend brought him the coolest rocket launching toy gun. Then on his actual birthday (a school night) we had a special dinner and treats. Then, that weekend we went out to eat at his choice of restaurant (Red Lobster) then had cake and presents. 

We ordered his cake the week before but when I went to pick it up they had forgotten to make it! Luckily, the head baker jumped in, found what she needed and one hour later I went back and picked up this. It actually was better than usual since she had used cake that just came out of the oven and it was so fresh and moist. Seth loved it!

Time to open presents. These are just the ones from us. He had other presents and cards too. Spoiled kids? Naw, just really loved!

First present, a new helmet. Isn't that adorable...umm, I mean really scary???

His little brains are now safe and sound while he rides around like a crazed lunatic.

Next came the football he wanted.  One just his size so he can throw and catch.

Of course there were some Legos. Like we don't have enough....

And finally his big gift, a new Razor scooter. Within sixty seconds of taking this picture he was out shooting down the driveway at warp speed, giving his Mama a heart attack.

We all had a great time celebrating Seth's sixth birthday, and he didn't seem to have any fallout afterwards. I think our little man is growing up.

Ahren, Allergies and Asthma (nice alliteration!)

We had suspected for a long time that Ahren had asthma, or at least asthmatic tendencies. Every time he got a cold he would always get a bad wheezy cough. Then two weeks ago a cold, wet front moved in on a Monday and by that evening Ahren had a little cough. No fever, no runny/stuffy nose, just a cough. No big deal. Well, throughout the night his cough got worse and worse. I gave him a breathing treatment early that morning and it did absolutely nothing. I got the other boys ready for school early and dropped them off the second the doors opened and then debated on whether to run to our doctors office 3 minutes away or head to the ER 30 min away. I knew our doctors office opens early and I would make it just as they opened their doors, so as they unlocked we were coming in. it turned out to be a good call because by that point he was in moderate to severe pulmonary obstruction and heading downhill. We spent the next couple of hours fighting to get him breathing well. He received a high dose of steroids in a shot and in a breathing treatment, he got 2 breathing treatments with heavy duty meds to relax his airways (meds that were new to me) and when he finally was breathing much better, we headed to the pharmacy to get 4 new prescriptions. Two days later he was worse again and back to the doctor for another shot of steroids. We also scheduled allergy testing for this past Monday. 

The allergy testing went very well. They used a lidocaine cream to numb his back so he didn't really feel a thing. We began with the easy portion of the test, the scratch test. Each little scratchy applicator is dipped into liquid allergens and then scratched into the surface of the skin. After 20 minutes the spots are measured for a swollen red reaction bump to see if they are positive. Shoot, poor Ahren didn't hardly make it to the twenty minutes and she was scrubbing the allergens off and reaching for Benadryl. His whole back looked like he had been stung by a swarm of bees.  In fact, he was so hugely positive for almost everything that he doesn't even have to do the second half of the test where they inject the allergen under the skin with a higher dose. He will begin allergy treatment as soon as they can formulate his serum and we will have to have epi-pens on hand at all times in case of a life threatening reaction. 

So what is he allergic to? Almost every single environmental allergen except for dogs and pigweed. He is also allergic to wheat, soy, peanuts, strawberries and celery. (Celery? Is that even possible?) So starting immediately we have adjusted his diet, alerted his school, and begun reading the labels on all food. (OK, why do they print those ingredient lists in teeny, tiny print when they are so important?) It seems so far that even gluten-free products can contain soy, or a product will say wheat-free but also state it is NOT a gluten-free product. I thought Gluten came from wheat? And what is soy lecithin? They call it a stabilizer but is it really soy and therefore off limits? I have been opting for cooking my own recipes to avoid some of the hidden dangers, plus sticking to fresh whole foods that don't have hidden ingredients. 

And so, I set out to make Ahren's favorite food. Pancakes. All-Recipes is my friend and I downloaded a highly rated recipe and headed to the store. I was amazed that they had almost every single ingredient in my local grocery. So on Sunday morning, I cooked our big family breakfast and we all enjoyed Ahren allergen-free pancakes. 

Then I decided to make Ahren allergen-free brownies. They turned out wonderfully! I couldn't tell the difference. It is going to take me some time to really get the hang of this diet, but I can do it. I almost messed up on Saturday while we were out running around. I needed to feed the kids and was heading for McDonalds when it struck me. The only thing he could eat was the french fries. So after a bit of racking my brian, I swung into Panda Express and got him a chicken/rice bowl. I just hope there wasn't any hidden dangers in it, but I think I can find their ingredients on the web and know for sure in the future.

Roadtrip 2011!

This past fall. we decided to get brave (or possibly insane...?) and planned a road trip of epic preportions for our motley crew. We desperately wanted to see family but the thought of trying to keep 3 little rambunctious boys happy and regulated through 32+ hours of driving plus a week staying with family was a wee bit scary. (Yeah, major understatement there. We were petrified!) But we decided to try anyway. I spent weeks getting prepared. We rented a bigger van, each boy had a basket of entertainment that sat on the floor next to their seat, we had a huge selection of snacks, we had DVD players, hand held video games, books, stickers, colors, books on CD and headphones for each child. I packed minimal clothes, counting on layering clothes if it got really cold, and the fact we would have access to a washer and dryer.  (And I packed a pile of knitting to keep me sane and calm)

And so we set forth.....

Over the river and through the woods

To Grandmothers House we went.

(and Grandpa too!)

The boys on Thanksgiving Day, all dressed up and on their best behavior.

Chris and his father, two peas from the same pod. Some nuts don't fall far from the tree!

Seth was attached to Grandpa from the word GO. Grandpa didn't seem to mind that he suddenly developed a second shadow.

Levi watching the Macy's Thanksgiving Day Parade, trying not to get too anxious to eat while smelling all the super yummy food!

Heading out to take hay bales to the cattle. Chris's parents live on a real working ranch deep in the heart of America. They are the salt of the earth, just like Chris. You couldn't ask to meet better people. 

Bye bye, off to feed hungry cattle!

Cousin Dustin challenges the motley crew to a Wii game (we brought our own Wii just to have something to entertain the crew when they grew restless. Brilliant idea! It entertained everyone!

The action in the danger zone. Food was coming out of everywhere. Home made breads and pastries, turkey, cookies, cakes, roasts, pizza and pasta, and a host of other gourmet goodies flowed out of this kitchen all week long. We didn't complain! It was the best cooking I have had in a long, long time!!!

We did a lot of relaxing. I have to say that as nervous as I was about this trip, I ended up being the most relaxed I have been in years. I felt like I had travelled a million miles away from my troubles and entered the home of perfect calm. The boys were well behaved and happy, we didn't stress about anything, and it was the most rest I can remember getting since I had kids. Seriously, it was better than any spa!

More food and family. Oh, and the laughing! Chris's family is hysterical! They had me laughing so hard my ribs are still sore!!!!!!

The end result was that the trip was the treasure of a lifetime. Good memories, good family, great food and many, many laughs. The bonfire at Uncle Randy's and Aunt Carla's. The visit to the dam nature center, even eating at the big buffet in town with the chocolate fountain. The boys still talk about it. The drive was even fine! We drove straight back (almost 17 hours) because the kids were sick and we needed to get back in time to get them to the doctor. No one whined, cried or got mad, not even once! We didn't even have to stop very often. It was a true blue miracle!!!!!

Hmmm, let's see...

What has been happening around here lately....

Legos have multiplied and now cover nearly all horizontal surfaces. Are they related to Tribbles (from Star trek the original)

Somehow one large dog has decided that the bestest place to sleep in the entire house is on top of me. I wake up pinned to the bed and stiff and sore. Great, the dog loves me!

The ABA (Applied Behavioral Analysis) therapy Seth has been receiving has opened a floodgate of emotions. Now that he understands emotions and has a name for them, we are seeing many emotions flow out of him each day. This is a wonderful thing, but also very trying. Having a child who cries and whines all day long is exhausting! One minute he is clinging to my leg like a toddler and the next his anger flares and he is kicking the wall, all with little or no provocation. Still, I am proud of him for working through these emotions. He can tell me what he is feeling now and actually talk about it. Amazing!

Work is amazingly busy and rewarding. Each breakthrough gives me goosebumps and nearly reduces me to tears. I am registered to get my certification this year, a tough and demanding process. Wish me luck! I have written essay questions, a written exam and oral exam to complete by October. I am super-psyched to get this certification!

Kaytee begins her first semester at Texas A&M in a few days. She is registered for 5 classes, has her books and has studied the campus bus schedule. She did it all on her own. I am so proud and yet so sad. My baby doesn't need my help. Aw heck, I am just so proud!

Ashley has already earned her Certified Nursing Assistant (CNA) certificate this year as a junior in high school. She is now working on an EMT certification and a Pharmacy Tech certification. She should have both by the time she graduates at the end of next year. She attends a special school in Dallas for kids interested in medical careers. By the time she is 18 years old she will be more certified than many adults in the work force. Can you say 'Overachiever'?

Ahren is going to see a diagnostic/genetics specialist soon. The last specialist agreed 'something' is really wrong, but never could define it. His last idea was to wait and see if he has new symptoms or detiorates further. Yeah, I can't sit by and wait for that! I'll keep you posted.

Levi has had a sudden burst in independence. He gets himself up in the morning, gets dressed, and brushes his teeth. He can also take a shower (complete with appropriate soapage) and get his pj's on all by himself. The only problem is that the child has absolutely no fashion sense. I hate to correct him and make him him feel bad so I am forced to let him go to school dressed in bright blue track pants and a green/brown camo shirt. At least the clothes are clean.....

Oh, one last member of the family I failed to mention. My sweet teddy-bear of a husband is still the love of my life, my rock, my soft spot to fall and the funniest man I know. I know you are jealous!

Doctors can be WRONG!

  Oh my sweet Ashley. She has unfortunately inherited a thyroid disorder from my side of the family that causes weight gain, lethargy, enlarged thyroid/goiter, dry skin, hair loss, problems concentrating and depression. This disorder is well-documented in my family. If left untreated, or poorly treated the end result is a life-threatening enlargement of the thyroid gland that restricts the airway and esophagus, and cancer of the thyroid.

  The normal blood tests that look at thyroid function look perfectly normal in those suffering this disorder, because the assays only look at the presence of the hormone. Unfortunately, in our family, the hormone is there but non-functional. Normal blood work, no active hormone equals bad news.

  Ashley was diagnosed at the age of 8 years old with this disorder and began treatment. The treatment helped immensely and her symptoms resolved. Unfortunately (I am using that word a lot!) her doctors after she moved to Dallas failed to increase the dose as she grew and had a very poor understanding of the disease.

  Fast forward to the present. Her general doctor has a vague understanding of the issues and agreed that continued medication was called for, but since this was not his area of expertise, he wanted her to see a pediatric endocrinologist. It took 9 months to get her into one, and then the fun began. (Heavy note of sarcasm)

  First of all, after the med student spent 20 minutes getting a detailed history, the doctor failed to look at any of it. She waltzed into the room, her lab coat flapping open to reveal very low hung tight jeans and a tight tee shirt that rode up revealing her abdomen and tattoos. (WTF?) She then proceeded to spend 4 minutes listening to the abbreviated history and reason Ash was there, then proclaimed that all the other doctors were wrong. Ashley did NOT have a thyroid problem, it was probably something else and she needed to get off meds right away. So Ashley weaned off of the support and began to feel like crap, gain weight, and struggle with overwhelming tiredness.

  I made many phone calls trying to explain our family history to the nurses or doctor. All I got was the run-around. So since i couldn't be at her next appointment, I wrote out a very detailed summary of the family history, what the genetic basis was for the disorder, how to test accurately for it, and how to treat it effectively. I was as detailed and informative as I could be.

  Yesterday, they had the follow-up appointment. The doctor argued with everything I had written and said it 'couldn't possibly' be the same thing her aunt and grandmother suffered from because that was just too rare. OMG WTF ^^&($*%*#$&&^^&)(&*^DFC!!!! I have no words for Doctor Hussy. if you have a strong family history of a condition, and the child exhibits every single symptom of the disorder and has previously been diagnosed with the disorder then treated for it and it improved, how in the heck can you even begin to think it is NOT that?

  I am preparing to write a letter of complaint to both her superiors and the AMA. This is criminal. If left untreated, Ashley will suffer her entire life and possibly face cancer, life threatening conditions and many surgeries. All because Doctor Hussy is stuck in  her own mind set.

I want to slap that woman silly. Or worse. Much worse. Needless to say, we are seeking out a new endocrinologist.