Huge progress

We have now hit the two week mark (and then some) of no corn or oats. I'm happy to announce Karsen is no longer screaming when he poops and is doing it every other day to every day. Who knew I would be so excited about poop. I forgot how hard cloth diapers can be, but boy am I happy he seems to feel much better. No more runny nose! It's still been very challenging for us, the quick easy meals no longer exist, and grabbing on the go is impossible. It's made my kitchen a disaster, but has made me plan a lot more ahead of time. Karsen has started to adjust, as well as Karter. We've been eating a lot of fruits and veggies, and juicing Just about anything you can imagine and Karsen is sucking them down! I think he eats better than me. :-)

Today Karsen free stood for 20 seconds. I couldn't believe it. Since this week his therapy team is on spring break I took it upon myself to do some hard work with him at home while Karter was at preschool. For 20 minutes he stood at a toy using his hand every few seconds to steady himself. I was blown away. I can tell he wants to walk so bad! I got a glimpse of the light at the end of the tunnel, and so did Karsen. He was so proud of himself. I can't wait to see him take his first true, stable steps.

First bread, then juice

My friends and family are amazing and such a huge support. We got a bread maker from a long time family friend and then yesterday one of our good friends gave us a really nice juicer! Both have already been put to good use. I seriously don't know where to begin with these generous people. 

Karsen has been eating peanut butter and jelly sandwiches with out a problem, which is hard to believe since he's been such a picky eater, he's really starting to come around. Of course on our freshly made, corn free, oat free bread. This mornings juice he sucked down in a matter of minutes. I decided to throw in quite a bit of spinach, some jicama, grapes, oranges, and a few blue berries. Boy did I do a good job of making it look gross. ha. 

We are most likely going to be getting chickens soon. If you didn't know, most chickens are fed corn feed, so you could see where that would be a problem since Karsen's highly allergic. I'm pretty excited, and of course Karter will probably pick out the chickens, he has one at my sisters house named McQueen. I can only imagine the names he is going to pick for ours. It will be nice to be able to give the chickens all of that pulp from the juicer I just put straight in the trash (we don't have a compost yet).

We are snuggled up indoors today, and although I've enjoyed the beautiful sunny weather, this raining snuggle day is just what I needed. The best part? Karsen's PT had to cancel today so we've had a completely relaxing day. It's been pretty nice. I'll probably yank out the sensory bins in a few in hopes to get dinner going. 

Staying cozy and enjoying this down poor of a day. Feeling incredibly blessed I can even stay home to do this.

Looking for suggestions

We've been successfully eating "clean" for over four days now and boys has it been hard. We have cut all corn (in any form) and oat, which basically cut out all processed food. Not like we really should be eating that all anyways. A long time family friend was kind enough to give us an awesome bread make which has already been put to good use and made three loafs of bread. We've been having smoothies every morning now. Since Karsen will ALWAYS drink them I throw just about anything in them. This morning was kale, spinach, and chard with apples, strawberries, oranges, pineapple, and a little bit of greek yogurt. Karsen sucks two of them down easily. My problem? My cheap, not so good blender (which is old too so that doesn't help) doesn't blend it up very good. My oldest, Karter, and my husband literally gagged on Sunday's smoothie because it was too chunky. And Karsen was getting so mad that his drink kept getting clogged. So, it's time for an upgrade. I'm looking for suggestions. I have  heard a lot about the vitamix, which of course I would hop out and buy right now, however it is quite expensive. Do I bite the bullet and get it? Or do I get a juicer? Or do I buy a more expensive blender, just not $400 worth? I haven't looked much into juicers. I would actually like to get one to make OJ, and apple juice.... but again, is that a waste of money? Should I just get a hand juicer? 

Karsen has been doing pretty well with the diet change. It was hard the first day or so since he couldn't have his beloved grahm crackers but now he has no problem eating my homemade bread with pb and jelly on it. Which reminds me, I'm out of homemade jam.... looks like that's on tonight's to do list.

Therapy has been moving a long. The other day Karsen used his scrubby brush (what we use to get sensory input on his affected arm) on his arm while I sang the scrubby song. Every time I started to sing it again, he'd lift his affected arm up and start to scrub it. This is a HUGE step for him. Every now and then he gives up a glimpse of movement in that arm. I know once he's old enough to understand to use two hands it will become a lot easier for him. Walking is still a long shot away for us, but that's alright. He'll do it in his own time. Next Friday we have an appointment to try out different styles of walkers to see which on works best for him.The biggest thing Karsen has taught me? Patience, it doesn't come easy. 

I've been trying to find a two seater wagon for the boys (the kind with seat belts) but a luxury item like that isn't really in the budget, so I've been on the look out on craigslist and the exchange. Plus why buy it new when you can find it gently used for much cheaper?

Thursday we have our annual assessment. I'm a little nervous about it since the six month review rocked my world emotionally. It's hard to hear all the things your little one isn't doing on target, but it's also nice to hear all the goals he has met that were set. So, I'm going in knowing my little man doesn't fit in a chart, he doesn't follow a list, he is himself. He does things his way, he does things in his own time, and does nothing but blow me away and prove many people wrong. 

I am so grateful for my beautiful family God has blessed me with. I have learned so much from Karsen and I know I will continue to learn much more. He has helped our family grow and has opened our eyes to the real world. Life is not perfect, it will never be. The well manicures lawn, with the two beautiful cars parked in the garage, with the spotless house, with the laundry all done, all natural home raised/cooked meal, with the quiet, obedient playing kids, and the husband that comes home to greet his wife with a a dozen roses... that's not real, it never will be. The internet has become this great place to find unique ideas for parties, kids rooms, and so much more (you know what I'm talking about, pinterest). But it started to become a place where I didn't appreciate what I had, what God has so generously given to me.  Don't get me wrong, I've gotten some great play ideas for the boys but the longer I stayed on it I would start to feel like a crappy mom not doing enough for my kids, not remodeling the house on my own, not dressing in cute trendy clothes every day rather than yoga pants. But let me tell ya, I love my yoga pants, I love my small house, I love that I am able to be home with my boys and it's time we all stop feeling inadequate for our job. God made us who we are, there were no mistakes. He knew what he was doing when he gave me Karsen. He knew I could step up to the plate, He knew I was perfect for the job, and you know what? I am!

Life is simply too short and too precious. 

Live your life. 

Enjoy the day.

Corn free, oat free diet

After Karsen's appointment on Tuesday, our doctor handed us a paper, a list of corn allergens. Here's what it said:

Corn allergen list

Acetic acid
Alcohol
Alpha tocopherol
Artificial flavoring a
Artificial sweeteners
Ascorbic acid
Astaxanthin
Baking powder
Barley malt
Bleached flour
Blended sugar (sugaridextrose)
Brown sugar
Calcium citrate
Calcium fumarate
Calcium gluconate
Calcium lactate
Calcium magnesium acetate (CMA)
Calcium stearate
Calcium stearoyl lactylate
Caramel and caramel color
Carbonmethylcellulose sodium
Cellulosemicrocrystalline
Cellulous, methyl
Cellulous, powdered
Cetearyl glucoside
Choline chloride
Citric acid
Citrus cloud emulsion (CCS)
Coco glycerides (cocoglycerides)
Confections sugar
Corn alcohol, corn gluten
Corn extract
Corn flour
Corn oil, corn oil margarine
Corn starch
Corn sweeteners, corn sugar
Corn syrup, corn syrup solids
Corn, pop corn, cornmeal,
Cornstarch, corn flour
Crosscarmellose sodium
Crystalline dextrose
Crystalline fructose
Cyclodextrin
DATUM(dough conditioner)
Decyl glucoside
Decyl poly glucose
Dextrin
Dextrose (also found in IV solutions)
Dextrose anything (such as monohydrate or anhydrous)
D-glauconic acid
Distilled white vinegar
Drying agent
Erythorbic acid
Erythorbic acid
Erythritol
Ethanol
Ethocel 20
Ethylcellulose
Ethylene
Ethyl acetate
Ethyl alcohol
Ethyl lactate
Ethyl maltol
Fibersol-2
Flavorings
Food starch
Fructose
Fruit juice concentrate
Fumaric acid
Germ/germ meal
Gluconate
Gluclonic acid
Glucono delta-lactone
Gluconolactone
Glucosamine
Glucose
Glucose syrup (also found in IV solutions)
Glutamate
Gluten
Gluten feed/meal
Glycerides
Glycerin
Glycerol
Golden syrup
High fructose corn syrup
Hominy
Honey
Hydrolyzed corn
Hydrolyzed corn protein
Hydrolyzed vegetable protein
Hydroxypropyl methylcellulose
Hydroxypropyl methycellulose pthalate (HPMCP)
Inositol
Invert syrup or sugar
Iodized salt
Lactate
Lactice acid
Lauryl glucoside
Lecithin
Linoleic acid
Lysine
Magnesium fumarate
Maize
Malic acid
Malonic acid
Malt syrup from corn (barely malt is fine)
Malt, malt extract
Maltitol
Maltodextrin
Maltol
Maltose
Mannitol
Methyl gluceth
Methyl glucose
Methyl glucoside
Methylcellulose
Microcrystalline cellulose
Modified cellulose gum
Modified corn starch
Modified food starch
Molasses (corn syrup may be present)
Mono and Di glycerides
Monosodium glutamate
MSG
Natural flavorings
Olestra/olean
Polenta
Polydetoxrose
Polylactic acid (PLA)
Polysorbates (e.g. Polysorbsate 80)
Polyvinyl acetate
Potassium citrate
Potassium fumarate
Potassium gluconate
Powdered sugar
Pregelatinized starch
Propionic acid
Propylene glycol
Propylene glycol monostearate
Saccharin
Salt (iodized)
Semolina (unless from wheat)
Simethicone
Sodium carboxymethylcellulose
Sodium citrate
Sodium erythorbate
Sodium fumarate
Sodium lactate
Sodium starch glycolate
Sodium stearoyl fumarate
Sorbate
Sorbic acid
Sorbitan
Sorbitan monooleate
Sorbitan Tri-oleate
Sorbitol
Sorghum (not all is bad, the syrup and/or grain CAN be mixed with corn)
Starch (any kind that is not specified)
Stearic acid
Stearoyls
Sucrose
Sugar (not identified as can or beet)
Threonine
Tocopherol (vitamin E)
Treacle (aka golden syrup)
Triethyl citrate
Unmodified starch
Vanilla, natural flavorings
Vanilla, pure or extract
Vanillin
Vegetable anything that's not specified
Vinegar, distilled white
Vinyl acetate
Vitamin C and vitamin E
Vitamins
Xanthan gum
Xylitol
Yeast
Zea mays
Zein


Are you tired? I am.
I decided after reading this I am growing and making all of our own food. Ok, slight exaggeration. But really, how much crap can you put in food and call it food? The things I didn't realize? Brown sugar, white distilled vinegar, bleached flour (not that it's good for you), honey, iodized salt, vanilla, and yeast! Ahhhh! Is there a corn free store??? I did however find a corn free yeast, it's red star (it's just yeast, like it should be). What was worse, as I was shopping today, if I found something corn free it had oats. Looks like I will be making all of our own bread and crackers. Oye!

I'm feeling a little overwhelmed.....

Good bye eating out (anywhere, can't even go to people's houses) hello crunchy mama... Although let's be honest, I'm kind of already crunchy. Cloth diapering, Chaco wearing, ergo carrying mama over here. ;-)

Blood work results

Today we had a follow up appointment with Karsen's new pediatrician (whom I am now I love with... Not literally). We double checked his eyes to make sure his ear infections were done and over with, and also went over the huge amounts of blood work Karsen had done to see what we could do next about his constipation (which goes hand in hand with him having a lower immune system). As soon as we get his constipation resolved his body should be able to absorb all the vitamins and nutrients required to fight off germs. That's the ultimate goal. It really gets old having Karsen get sick once a month. I'm not exaggerating when I saw once a month. I stopped counting after he was 8 months old (sick 8 times). Oh and by the way, he's sick right now too. :-(

After we went over all the blood work results, we had found Karsen is allergic to corn and oat. Oye! Both of those are in everything. The lab messed up and didn't run a milk test (we are trying to get them to run that one as well now). Our hope is after we cut out corn and oat Karsen's constipation will no longer be an issue. If not, next we cut out dairy. Even if the test results come back negative, the test isn't the most accurate and he would still have 50% chance of having a milk allergy. So, worth trying it rather than relying on a not so accurate test. Lets hope it doesn't come to that.

We also had our second round of his shots. If you haven't read before, Karsen hasnt had any vaccines because he was either sick or his seizures weren't under control. Now we are playing catch up, and being selective. The last thing we need is a vaccine bringing back those nasty seizures. For those of you research freaks like me and wondering what ones we decided to do, we decided to do all the ones that have a meningitis risk (if Karsen got meningitis it would be lethal for him). The ones we have done two rounds of: dtap with out the p (why no whooping cough? Because that vaccine has the highest seizure risk and also is the least effective vaccine). (Let me point out, I am no doctor but this is MY decision for MY child. No judgement here for what your schedule is for your child. Karter's vaccine schedule is completely different than Karsen's). The ones we plan on doing: HIB, PCV, and MMR. Rotavirus is not necessary since he is past the age of needing it. All the other we will be holding off until older.

We have our appointment set to meet with the cardiologist to see about his heart murmur. I'm confident that appointment will be a breeze and it won't be a problem for Karsen.

For now, wish us luck on this corn free, oat free journey (at least he doesn't have a gluten allergy) oh, and be praying we don't see any seizures today.

Couldn't leave you with out a picture of my sweet boys (playing in their sensory bins).

Grass stained bum

Waking up this morning, I thought my whole family had a bad case of the Mondays. Karsen had a tough pt session this morning working on walking and free standing and Karter and I, well... we have no excuse for the grumpys except for Daddy being at work. So, after a much needed nap and lunch, we are taking a break from the glasses and the braces and soaking in some much needed vitamin D. Just what this mama needed too. Karsen loves being outside. If anyone leaves a door open, he's scooting for it, and scooting fast. Letting him get a grass stained bum and letting today be easy. As I sit here typing, Karter is playing pirates and Karsen is cracking up every time he say "Arg!". Happy heart over here. Look at those happy faces, how could you not go outside today?!
We have an annual assessment next week, can't believe it's been a year! We also will be starting on speech therapy. Woo hoo! Couldn't be more excited about adding another therapy appointment. Bring. It. On.

Hardest part

I think the hardest part about Karsen having cp is the unknown. There is no scale for cp, no two kids are the same. Even if you had two kids with the same amount of brain damage in the same place they would still be completely different. When you throw infantile spasms into the mix it becomes even more complicated.

So, here we sit in the unknown. Not knowing when or if Karsen will talk. Not knowing if he'll get any function out of his affected hand. Not knowing if he'll have a slight limp or a severe limp. Not knowing if he will be main streamed in school. Not knowing if the seizures will return. Ugh. The first one and the last one are two of the hardest for me. Seizures are so scary and ugly. I hate them. I will always be on watch for them, and that's just life. All I can do is pray they don't return. Talking, I know I have blogged about it before and doing so now.  It's especially hard for me. I get sickly jealous of babies being able to sign or even say words to their mom. All I get is full blown tantrum or a happy face. When I'm talking tantrums, I'm not talking your average 19 month old tantrum, I'm talking pure frustration and anger that he can't tell me what he wants. He will back arch and fling his head back so it will hit the ground and kick his legs and hit whom ever or whatever is near by, and if I'm in grabbing distance he'll try to grab a handful of my hair and pull as hard as he can. In the midst of these fits you would think I would be getting mad, when in reality it just breaks my heart. Yes, I've got lots of broken hair from these and I really don't care. I just want him to be able to tell me yes or no, or say one word, or use sign language. It's just heart wrenching to see him so mad. 

Sign language. Well, I used it for Karter (my first), just the basics, and it was great. Karter also talked super early. By the time he was 19 months (Karsen's age now) he was starting to put sentences together. But sign language for Karsen has not been effective. I'm still having a hard time knowing if he understands my hand gestures or if he is understanding my words, one thing is for sure he can't do it back. And really, if he were to pick up sign language full time I would be the only one able to understand him since he doesn't have the use of one hand. Communicating with others just wouldn't happen. So, as you can see I am and will always be stuck in a state of unknown for Karsen. I guess I just need to figure out how to live in this state better. It's not going to change so I need to start changing the one thing I can, myself. 

I guess today may have been a harder day, emotionally, than I expected. The jealousy eats me up, seeing how effortless it is for a baby to get from sitting to pulling themselves up to standing, while Karsen is grunting, screaming, crying and struggling so hard to just make it up the 3 inch stairs, and inevitably he doesn't make it up on his own. He's been trying to pull himself up to standing for quite sometime, around 4 or 5 months, he still isn't close. Hearing another baby say "ba" and point to a ball , two things I would LOVE to have Karsen do, and yet they are coming from the mouth of a baby quite a bit younger than him. I would just love to catch a break. I feel like we are stuck in transition. Karsen isn't quite young enough to be in a "baby" group anymore but he's not really a "toddler". We are just stuck in this grey area and I just wish it would go by faster.

Boy am I having a lesson in patience. It's one thing that has never come easy for me and today I know I am not trusting in God. I am not letting him guide me. I'm trying to hard to have it go my way and not go His way. Wanting time to move faster so we can get over this rough spot. So, here I am. Giving it up, giving it to Him. There's no better way, but boy is it hard to do.

upside down

I feel as if my world has been turned upside down. It's been a crazy couple of weeks. We got upped on therapy with his pt, which is great but makes for a even jam packed schedule. Karter, Karsen's older brother, started karate on Tuesdays. In between preschool, therapy appointments, doctors appointments, driving, and diaper laundry I'm feeling a little out of the loop and not so much fun. I miss my friends, I miss random phone calls, and I miss lazy girls nights. All work and no play for this mama.

Karsen has stopped being so resistant to using his left hand. It's like something clicked one day. Mary Beth got him doing some pretty cool two handed things. So, he's not ignoring it anymore which is huge. 

I've found myself getting very frustrated and sad about Karsen's speech.  I. Just. Want. Him. To. Talk. Yes or no would be fabulous, mama would be even better. But we have yet to hear any words. I can imagine it's going to be pretty hard for Karsen since he has such oral motor delays. While talking to his home visitor today, we were talking about where he is hitting in the age bracket of certain areas. Like receptive language (basically how much he understands) he's hitting at a 12 month age, expressive language (being able to talk or communicate in some way weather it be speech or sign language) he's at a 6 month age. That kind of broke my heart. I hate seeing him frustrated, I can tell he wants to tell me something. I just wish it were easier for him. 

It's starting to get harder (emotionally) being around strangers with Karsen. People are asking more questions, which is fine, and many people try to talk to him like they would many other 19 month old kids. At the grocery store, the clerks often offer him a sticker. Such a small gesture and I'm grateful they include him, but I'm sad Karsen doesn't get to enjoy that simple joy of a sticker, instead of putting it straight in his mouth. It's also been especially hard being around kids his age or even younger that are talking up a storm and running all over the place. I hate that everything is a struggle for Karsen. But with all this said, I'm starting to feel like he's at a stand still again. Time and time again I have felt this way, and every time I do he does something amazing. So, I know great things are in store for us. Maybe it will be a word, maybe it will be more use of his left hand, maybe it will be some sign language, maybe he'll attempt to weight bare on both hands. Whatever it may be, I know he'll blow me away like he always does. 

Check out that two handed action. Did it on his own, no prompting from me.