Monday, February 27, 2012

Back from Iowa

  I got back yesterday from my trip to see my parents. Everything is going very well and we have some answers and some plans. To re-cap, my dad had kidney stones, and in the process of looking at them with ultrasound, they found a large abdominal aortic aneurysm. Then, while doing a CT scan to see the aneurysm, they found a mass in his bladder. So off I went to be 'helpful' (read: bossy) and see them through some of this.

  So last week after I got there he had further scans to get a really high resolution image of the aneurysm and then we met his cardiologist. We were hoping the repair would be a simple and straight forward catheterization procedure done on an out-patient basis. One look at his scan and each of us instantly knew this was no 'straight forward' fix. The aorta is supposed to descend directly down from the heart and then split into two branches, becoming the right and left femoral veins. His looked like someone had attempted, poorly, to make a balloon animal out of his. It kinked this way and that, folded over on itself and then ballooned grotesquely before once again folding back on itself. It isn't so much an artery as a giant knotted puzzle. So, no simple fix. This will require a big surgery that will last approximately 6 hours and require a week in the hospital. The good news, though, is that he is considered low risk. His heart is strong and healthy. He will see a pulmonologist this week to get his lungs stronger and breathing deeper so that there is less risk from being intubated for so long. The surgery is scheduled for later this month and I will be returning for that as well.

  We also followed up on the bladder tumor and on Friday we checked him into the hospital for a resection of the tumor. The surgery went very well and fast. The tumor was three times as large as they thought, but it was only connected to the bladder wall by a thin stalk. He went in, dug out the end of the stalk, removed the 2 1/2 inch growth and sent my Dad home with just a urine catheter and meds. He called is a 'low-level cancer' which means slow growing and because he thinks he got it all, that this procedure was 'curative'. If the margins of what he removed are not clean, they will just go in and take a little more and call it done.

  So, although kidney stones are awfully painful and I wouldn't wish them on anyone, in this case they led to us finding two very dangerous issues that were caught in sufficient time to be completely fixed. My new motto is: God Bless the Stones! (I think that would make a very nice cross-stitched pillow)

Friday, February 17, 2012

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?

Sunday, February 12, 2012'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.

Friday, February 10, 2012

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!

Monday, February 06, 2012

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.