One stay at home moms journey to find herself again

Sunday, August 7, 2016

Immunity

4 years ago I never ever thought we would have to deal with Immunity issues...

We've been through a couple specialist appts in the last couple weeks, along with more blood work, and some more news.   I haven't updated many because I needed time to get my thoughts in order and come to terms with it.


Wesley's antibody counts (the 4 other sets) are all in the normal range for his age.  His IGG is a little low (remember, this is the "big one", which means his vaccines don't work properly) but nothing scary low.  His IGA IS low, like we were told awhile back, but it's not -extremely- low.

At the Immunologist Wesley did blood work for all environmental allergies. We needed to see if he has allergies or if he shows symptoms of IGA. Some kids will never have any symptoms and they'll never know they are IGA deficient.  Other kids WILL show symptoms.   Wesley is one that shows symptoms.  We needed to test for allergies to confirm or deny that.    He has no environmental allergies.. Meaning anytime he has a runny nose/stuffy/or just generally not feeling well, it's not allergies.  It's a cold or virus he cannot fight.  Now, this doesn't always mean he is very sick... What affects him may not affect other children (because they have normal immune systems)
We also found out he has decreased immunity (despite being fully vaccinated) to Pneumovax and Tetanus.  Pneumovax is the most serious.. That vaccine protects you against Pneumonia and Meningitis.   Meaning, especially during the winter, we will need to be more careful and more aware to properly treat any sort of respiratory illness he may get so that it doesn't turn to pneumonia.  He is scheduled to get a different dose of Pneumovax next week and in a month we will do more blood work to see if his immune system has come up to normal. If so, we're great.  If not, well, I've been told we will "take that as it comes"   Tetanus is only an issue should he get a bad cut and in that case we would go to the Dr and he'd get a booster and he'd be okay.   These aren't the best results we could have gotten but both are treatable and he poses no risk to any other kids.
         Please realize this immune issue has NOTHING to do with the vaccines he got  as a baby and will continue to get. This is an issue with his immunity and how he was born.  Vaccines WORK.  I have 2 fully vaccinated older children... Our Wes has just a different physiologic make up.

So.. What can we do?  Well... He won't be living in a bubble.  He needs exposure. He needs to be around others. He will continue school as normal. He'll continue life as normal.   Our home life has just changed a bit. Lysol spray is my best friend.  We sanitize our hands often, especially before eating. We are giving him vitamins (his "fizzy drink") and we're living our life.  All continues.  If he should get sick I feel completely and totally prepared to handle anything that comes.   We will continue to get yearly Flu vaccines and stay current on everyone's vaccines. We have an amazing Dr. who trusts me as a mom and listens to me and we have amazing specialists who give us advice. The most I have to do is alert new Drs. about his IGA deficiency as they will be treating him differently. He recently had a sinus infection, normally, with the girls, I would have let it run it's course and wouldn't have given antibiotics but Wes was given antibiotics and was better in 2 days.  I guess you can say the last 4 years learning how to be an advocate for him has prepared me for this.
I've found essential oils that do not cause him to have an asthmatic reactions so we have begun using those to help keep him healthy.

Next we saw a Gastrologist.  He was previously tested for Celiac but we found out that since he has IGA that test could be false, as IGA throws off all labs.   We are going going with a less invasive course of treatment  for a month to see if his symptoms improve and if not he will need to have a scope done to test the lining of his gastrointestinal tract to test for Celiac, as that is the only way to test properly for Celiac in people with IGA.  

So that's where we are at now..at least for a month.

Friday, July 15, 2016

IGA Deficient

We've had a fairly significant change in Wesley so I thought it best to update via blog..

Wesley had some blood work done last week and we got a call earlier in the week that he has an IGA deficiency.    IGA deficiency is a genetic immunodeficiency where he lacks immunoglobulin A, which is a type of antibody that protects against infection of the mucous membrane lining of the mouth, eyes, ears, airways, gastrointestinal tract, etc.

The body has a number of different groups of antibodies..when someone is lacking in more than one of those groups they are considered Immunocompromised .

On one front this answers SO many questions as to why he was one big constant ear infection for the first year of his life.  We'd get stronger and stronger antibiotics and it would fix it for maybe a week, then we'd start all over again.  It's explains why when he gets an Asthma attack it takes forever to get him over it.  It explains why when he's sick it takes so long for him to feel better.    

If you think about illnesses that affect the mouth, eyes, ears, respiratory tract and gastrointestinal tract we're talking about nearly -every- childhood illness.   Flu, colds, stomach bugs, pink eye, runny nose, etc.

Basically he lacks the antibodies to fight  these illnesses easily. They hit him longer and harder.   I've always said sicknesses hit him harder but never really knew WHY until now.   At age 4 Wesley is a fairly healthy child...I contribute a lot of that to our diet.. we try to limit processed foods, we eat -lots- of veggies and fruits, we use hand sanitizer and wash our hands often; but when he does get sick.. it's a fight.

On another front I am extremely worried.. How will this affect him once he's in school full time, around everyone's germs for 8 hours a day?  How will this affect him as he ages?  Will this affect any of the future surgeries he is to have?

At this point we don't know much about how this will affect him.  We have an appointment with an immunologist in about a week and have an appt with a gastroenterologist in August.


This was probably the 2nd biggest blow to us as parents..first being when we found out he had a cleft lip and palate.  I never ever imagined anything was wrong at such a genetic level.   Since this is a genetic thing is it somehow related to his clefts? Or is this just two random happenings.  My gut says no.

I hope to get answers to all these questions when we start seeing specialists.

Saturday, February 6, 2016

Wesley Update.. .my baby is almost 4.

Thought I'd post an update on Wesley, as it's been awhile.  He will be 4 in just 90 days.  That's is just unbelievable to me.  How are we almost at 4?   Wes is solidly in the midst of 2 day a week, half day, preschool.   We still have our "no go school" tantrums, where he refuses to get dressed, rips his clothes off, hides, etc,  before school but we are to the point he rally's and will end up walking in like a big boy.   There's also no more tears.  The other day we had a huge victory; his favorite teacher "Miss 'manna" wasn't there, this would normally cause the worlds biggest tantrum/crying episode... I am pleased to say he walked in, said "Bye" and it didn't phase him that "Miss 'manna" wasn't there.

We're tossing around the idea of switching to a 4 day a week preschool next year, in hopes of further help speech and social issues... my one big concern is can he handle that.  It would mean leaving our preschool that is partially special needs to a more 'mainstream' preschool.   I don't know if he can handle that.

Life seems easier now than 6 months ago, but maybe we've just grown accustomed to it?  There's still crying during haircuts, screaming during bath time, not wearing certain clothes/socks/shoes because they touch his wrist or are itchy; not eating certain foods because they are "hot" or "spicy"  Meals are like Olympic events...We try different food combos/games/seating all in hopes that he will eat..   I hate meal times.  Sometimes I give up and let him eat in front of the Tv because it's the only way to get him to eat, which means he won't be up 3-4 times a night hungry.  He normally will eat for Josh but he isn't here all the time and when it's just me it's a battle.   Some may judge... Think I'm lazy... I don't know, maybe I am... I know I'm trying to survive, I know I am trying my hardest.. I know I'm trying to get him to eat and after raising 2 girls, I know dinner time shouldn't be this hard.  I hate dinnertime.. it makes me want to hide.  The same food we had last week is suddenly too spicy.. sure, I could force him..but then he will gag.. then he'll throw up... at the table.   That stinks.   I don't know what to do and getting help hasn't been easy.

I advocated hard for occupational therapy at school and they finally tested him but since he showed nothing at school, they won't provide help.  Talk about defeat.   They suggested maybe he was "Pulling the wool over my eyes"   Which, frankly, didn't go over well with me.  They said since they don't notice anything, they won't help.   They don't bathe him at school; They don't wash his hair; They don't cut his hair or change his clothes.
We have an appointment with a developmental specialist this summer..we've been waiting almost a year for this appointment... I hope it sheds some light on things.

Speech-wise, his language has grown in leaps and bounds.   He's now actually trying to say words.   His speech sounds like someone with a hearing loss would sound, but the words are THERE.  Few can understand them, but they are there and that is HUGE!   At this point I think the issue is that his palate doesn't work.  Which would mean another surgery.  The palate not working properly would explain his pronunciation problems, along with the fact his upper lip doesn't work properly (doesn't fully close and touch the bottom lip)   At this point he is too young to test and see if the palate is actually working so we wait, and I'm okay with that.  After the last palate surgery I'm in no rush to do another.

At the moment we're dealing with a hyper focus issue on smoke detectors.  We recently replaced ours and it's caused a big drama.  Wesley hates this house and the "Fire larms" .. Sleep is a battle because there's a "Fire larm" in his room.

We also made the decision to get Wesley a blood test recently to see if the certain triggers were due to allergies..inducing asthma or real asthma.  The blood test came back to no allergies on certain triggers so we are dealing with asthma.  Knowing for sure was huge weight off my shoulders.  The clarity.  Real true clarity in dealing with a special needs child is worth it's weight in gold!

I haven't posted much in the last months as I've had a couple "Nothing is wrong with him" "he is normal"  "Being dramatic' issues go on and I Haven't felt the need to stir the pot any so Thanks for everyone's support.  We've been surrounded by amazing friends, new and old,  who have been such a support to us in the past 3 years!    Keep us in your thoughts and prayers as we are in a "lull" time but that could quickly change in the next year.    

Monday, August 3, 2015

Day 32.... Am I worth more than a Pile of dirty laundry!?

Here I sit.. day 32.. and I'm eating Whole 30 approved chicken salad..with whole 30 Mayo.. on Spinach leaves..  and here's why... I woke up on day 32.. .Today.. with the worst migraine I have ever had in my life. I'm talking light hurting, hit with a steel pole, please nobody talk to me Migraine.

On day 31 the only non Whole 30 approved foods  I had was 1/2 a biscuit with strawberry Jam, a PB&J and a  small piece of cake.  My body was not happy. And I wasn't prepared for that.   I'm not sure what it was..whether it was the grains or the sugar or both.  But it hit me like a ton of bricks.   That cake or PB&J was not worth the pain I had today.

Today all I wanted was my "Good" food.  J and I did go out to lunch today at Olive Garden.. I stopped myself after 1 and a half bread sticks and half my lasagna... It was a splurge I was willing to take a hit for. It was good... It was not "Oh my gosh, take me Jesus" good, though.. as I remember it being.   I've gotta find the right balance and I wasn't prepared for that.   At around 2pm after our big lunch I felt the all too familiar Carb Coma come on.  Something I Haven't felt for a month.  It sucked.  I hated feeling exhausted... Because I ate some sub par food.

My other struggle has been taking the time to prepare food for myself now that I don't -have- to.  My mind says "I'll just snack on the kids' pancake.. I don't have time to make anything"  I think of everything that's waiting for me.  Bathing 3 kids, vacuuming, dishes, laundry, mowing the yard,... It's all calling me. Every mom feels it. The pressure.  The kids need this or that.. I don't have time to make myself anything..   I have to put myself first. Before the laundry.  Essentially I am telling myself I am worth less than a load of stinky clothes.  Woah. I am telling myself I am worth less than a load of stinky clothes.   That puts things in perspective huh?   Yet Here I sit with all the weight of everything that needs done pushing down on me.  The little voice in my head telling me I dont have time to prepare something because Lillia's out of clean pants.. and the yard really needs mowed.. and the trash needs taken to the curb.. and the carpet needs to be vacuumed...and I really ought to  mop too.

Day 32 and I haven't found a balance yet.  I really hope I have balanced today correctly.

1.  I am important and deserve good food
2.  Is that splurge worth whatever revolt my body may do?
3. Am I more important than some dirty clothes.


Saturday, August 1, 2015

Day 30...Holy smokes..did I really do it?!

Today is Day 30!!  Cooking Whole 30 has become second nature to me.. so second nature that when I went to make my grocery list for the next couple weeks 99% of the meals were either Whole 30 or Paleo because none of our "normal" recipes sound good.  Cheese, cream, pasta... Not appealing in the least.

So...30 day recap....

I've lost a grand total of 15 lbs.  FIFTEEN!!  I was originally hoping for 10.  At the 2 week mark I was 14 lbs lost.  After that I had hoped to get to 20 lbs but for some reason the remaining two weeks I only lost a pound.  I continued to eat clean and I didn't starve myself, just as I had done the first 2 weeks.  All in all, I'm amazed!   I did no exercise whatsoever.  Super pleased.    I now have only 15 more pounds to get to my goal weight.

Non scale victories:  I'm sleeping better than I ever have.  I have more energy than I ever have.  I no longer have the 2pm crash.   Sure I get tired and worn out but I no longer crash.  I'm happier. My moods are better.   I had zero PMS.  I haven't felt bloated or had any stomach pain in a month.

SO many victories.  When I started this I was completely and totally scared. I had never done anything like this before.  In Kansas our meals are made up of biscuits, gravy..lots of gravy...cornbread..corn...
It's actually frowned upon to not eat corn on the cob during the summer... I got a couple "You can't eat CORN?!?!"  responses. haha   And to step out and completely change everything I ate was really  hard and really scary.

This was, overall, one of the -best- things I have ever done for myself.   I'm a better mom.. a better wife.. I get more done in the day..

Budget-wise:  Our budget in July was actually better than it has ever been. We ended the month with excess funds and that never happens!

What I've learned:  Food doesn't control me.  I don't have to eat food that is in front of me.   Sure, biscuits and pancakes are good but I don't -need- them.   Food fuels me and that's it's only job. Food's job isn't to make me happy.
Watermelon, trying new veggies, eating zucchini fresh from a garden... -that- is exciting.

Moving forward we've decided we will be eating an 80/20 diet.. 80% whole 30/Paleo, 20% regular diet... Some things will never come back, the coffee creamer for instance, eating in the evenings, grains will be much more limited for me overall

Breakfast today was 2 fried eggs, 1/2 an avocado, grapes, and some roasted potatoes
Lunch was later but I had a chicken sausage, tomato slices, and a nectarine
Dinner will be some pork chops, brussels, and some zucchini

I see another whole 30 in the very near future!!

Tuesday, July 28, 2015

Days 23-26

Things are going pretty well.

I did have a major slip up but I'm not beating myself up.. I'm a grown adult and I made a conscience decision knowing full well what I was doing and honestly, I don't regret it.  Not. One. Bit.   I was 24 days into Whole 30.  My cheat came after a 4 hour trip in the ER... sound barrier screaming from a 6 year old... an extremely rude nurse.. knives... shots... a meth head... a criminal.. and an ER that screwed up a prescription.    Wow.. I made that sound totally more dramatic than it was.   Our middle daughter got bitten by a tick about 6 weeks ago and on Sunday she was complaining of leg pain and showed me where the tick bit her.  That bite was so incredibly infected and I wouldn't have been able to get her to the dr until 24 hours later so made the decision to take her to the ER.. Shes just fine now but it was quite a dramatic experience and we both left in tears.  My nerves were absolutely shot.  I had to hold her as they treated her and she screamed directly in my face in such a decibel I have never heard before.. It was an ear shattering 5 minutes of screaming.  Poor girl!   Anywho..we left there and then had drama with the pharmacy.. and when we got home I once again burst into tears..My whole body was shaking from nerves.  Mind you during all this I had a bed ridden husband and 2 other kids to make sure were taken care of.  My nerves were so incredibly shot and I made the decision to have a hard cider after the kids were in bed.  Yup. I did.  No regret.


Food wise things are going great. I have been trying to think of what my first food will be after whole 30 and honestly I can't think of anything I am dying for.  I am not having any huge cravings for anything.  We are less than a week until we are done and I don't want it to end.   I don't miss eating grains, sugars, etc.   I'm enjoying how I feel and how my clothes fit.  I'm enjoying how I look in them.

Last night we had spaghetti squash, homemade sauce, and turkey meatballs.  Probably, by far, my favorite Whole 30 meal.  I don't miss spaghetti at all!  And I've always said I should have been born into an Italian family.  I could eat pasta and garlic bread and sauce all day long.   It's the stuff I dream of at night.  After the last 26 days the carbs have no hold on me anymore.  Sure, they are good..but I don't desire them.    I love the fact that I can eat a huge plate of food and leave the table and not feel bloated or overly full in the least.  We all know the "Thanksgiving feeling"   I felt that more often than I'd like to share..and not just at Thanksgiving.... I leave the table with zero stomach pain, zero bloat, zero "I need unbutton my pants" feeling.  I leave content, happy, and pleasantly full.

It's becoming natural for me to cook Whole 30 foods.    One thing I am not used to is salads.  *gag*  I've never been a huge salad person and Whole 30 hasn't changed that.  I am just not a fan of salads. I'd rather get my veggies other ways.


Overall, thus far........... Best thing I've ever done for me.  It was overwhelming and scary at first but I'm so glad I embarked on this journey

Friday, July 24, 2015

Day 22

So I kinda fell off the blogging wagon.   Sorry.. I was buried under piles of laundry.   I've safely made it to the top though.

Here we are.. Solidly on day 22.  It's going pretty well. I am starting to get a bit bored of food, especially lunch.   Some of my faves, though, are, Hamburger hash.. Hamburger, potatoes, any veggies you wanna throw in and just cook until potatoes are tender then top with a fried egg and green chili sauce.. amazeballs!   I'm eating  a lot of eggs, which I don't mind.  I'm not a cereal/oatmeal person anyways so most days I would just skip breakfast instead of preparing something, like eggs, for myself.  So I'm kind of enjoying *Having* to make breakfast every day.    I eat apples with almond butter often.. I top it with coconut and almonds.  Super yummy.  
Last night I hit a wall.. I just could NOT make dinner one.more.time.   We ended up ordering the kids pizza and then J and I had a gift card to Chilis so we ordered from there... He had salmon and I Had a bacon burger, no cheese, no bun, no mayo.     I was very sad to see that the ONLY vegetable Chilis offered was corn and broccoli.
We also eat a lot of bunless hamburgers and tacos.   We make taco meat and then eat it on lettuce. I think next time we'll try cabbage instead.
We grill more of our food now.
One day my goal was to absolutely not cook ANY part of dinner in my kitchen..  We had steaks, veggies, and pineapple all on the grill. It was delish!   And my kitchen stayed clean.


Today we went to our local market and found some amazing deals on fruits/veggies.
I really love eating like this and to top it off..our budget is better this month than it has ever been.
My sleep is amazing.  Most days my energy is pretty good. I'm happier. I don't have a constant "fog" around me.  Neither Josh or I have felt bloated after eating in the last 22 days. I have zero cravings for soda.  I feel more confident.    After 3 years of not being able to drop any weight no matter how much I tried it is absolutely mind blowing to me that I can be full, eat a good amount of food, and STILL lose 12 lbs in 14 days with zero working out.  I plan to start hitting the gym again once the kids are in school and this was absolutely the jump start I needed.


Tonights dinner will be roast, Brussels, and probably avocado.. I'm not sure.  I found a great deal on Brussels at the market today so I'm going to attempt to cook them. I've only ever had them frozen, in a package so it'll be interesting if I like fresh ones.

For lunch I stole some of the roast out of the crockpot and had cauli-mash, carrots and some unsweetened applesauce.