Discouraged

My boy was hospitalized for a week. He had emergency surgery, and a non emergent surgery mid June.

It's been a long month.  A couple nights ago he started reacting to his formula.  The only food he can eat, and he started reacting to it.

What am I going to do if he can't eat it? I am so discouraged right now.

My cousin is moving in a couple weeks, I am having to switch the kids into the same room. I'm worried. I'm worried about not having space, about the kids being in the same room.

They spent their first night in the same room, it has not gone well.  It's currently 3 am, and they are up running around, opening and closing the door, laughing and giggling.  I'm glad they are having fun, but considering I haven't slept in days, since he's been reacting, I'm dog tired.  Maybe they will sleep in tomorrow? Fat chance haha.

Update

It's been an overwhelming couple months.  For some reason, the last post, although written in April, posted today.  Weird blogger. 

Update on my little man: He started early intervention last week.  He tested severe in 4/5 areas and moderate in the 5th.  He is also showing many signs of autism, but we are hoping it's just all the stuff he is dealing with right now.  There was a worry about some deafness, but he passed his hearing test today. Hooray! We'll take the small miracles when we get them.

He was diagnosed with a disorder called FPIES, and has a repeat scope and biopsy next week. 

I can't believe he will be 2 in a couple weeks.  It's been an adventure for sure.  He is such a sweet baby. I love him more than life.  I hope we can get his life to be a little easier, but in the mean time, I'll take the small miracles as they come :)

Hard Day

Hi :) I'm back.

It's been a rough bit, so I had to take a break.

Today was a hard day.

Little Bear had to have a test done today at the hospital, and when all was said and done, a nurse got enema fluid squirted all over her twice, a doctor got kicked, I got puked on, my poor boy screamed in terror for 30 mins, my BFF's floor got pooped on, I was pooped on 3 times, Little Bear had 5 outfit changes, we blew threw a full package of diapers, I changed the sheets in his crib, and had to disinfect his mattress twice, and had to throw away his pillow.  He has a terrible day, much worse than mine.  He starts crying and shaking every time I have put him down, let alone left the room without him.

He has been absolutely miserable.  It breaks my heart.  It's so hard to watch your baby have to go through that, and hold them down while it's done.  I am so done with Drs, tests, and the daily struggle that is his life.

This latest test is for a disease called Hirshprongs. Guess we'll see.

What not to say...

All children struggle at some point in their lives.  Some struggle more than others, and some have very obvious struggles that even the most unobservant person can see.  But, there are those whose struggles are not always obvious, and by looking at them they may “look fine” so those looking in.  Their mothers know those struggles.  They are there to fight every battle with them, and they take much of the weight of that stress on themselves.  They spend sleepless nights worrying, researching, and trying to find help for their child.  At some point in this battle, they reach out for help, for understanding, and for someone to help carry that load, even for a just a minute.  The most disrespectful, uncompassionate, and careless thing you could say to a mother in that moment would be: “He looks fine to me”.  Those five words tell that mother that all of her worry and her fight for her suffering child are worth nothing, that she is over dramatizing a situation, and that she is making herself sick over nothing.  It invalidates her child’s struggle, and the hell that they are going through. 

My son screamed at least eight hours a day for the first 21 months of his life, and still screams for several hours on end each day.  He suffers from a whole host of medical problems that cause him much pain and frustration.  There are very few that truly know all the details of his struggle, the endless doctors, hospital visits, tests, medical bills, extremely expensive diet, sleepless nights, fighting for him, and trying to find a way to help him.  People don’t see the speech and development delays, or the fighting to keep him eating, and trying for two years to get him off of the Failure to Thrive classification.  They don’t see the dates my husband and I don’t get, and the attention my daughter loses.  They don’t see the hours I spend on the phone with doctors, insurance companies, and billing offices.  People don’t see the hours I spend pacing with my son. They don’t see the scratches I get from him in his bouts of extreme pain. I plan every outing around the hours of the day that are the best for him, and how we stay completely isolated for 4 months out of the year to keep him from getting deathly ill. 

It is so hurtful to me, when people ask about him, I give them a little background, and immediately they say “he looks fine to me”.  Nothing brings out the Mama Bear in me more than that sentence.  It makes all of our hard work seem tainted, it makes all of the progress my son has made seem unimportant.  But you know what? It’s so important.  We have worked so hard, and we have so much work ahead.  He is tough, tougher than anyone can see, and I am tough, and I work hard for him.

It’s most painful when those that are close to us say that to me.  They of all people they should be the most understanding.  I try so hard to handle as much of it alone as I can, but in those moments where I am so ready to break, the exhaustion is overwhelming, I don’t know where else to turn, and I just need someone to listen, it is devastating to hear: “He looks fine to me”. 

While a child may “look fine” from the outside, next time a mom is really struggling, and reaches out to you in some way, please choose your words carefully, please think about how you would feel if someone said that to you.  If you were sick, or depressed, and reached out for help, and someone said, “you look fine to me”, imagine how it would break you.  Respond how you would want someone to respond to you.  Think before you speak.  Have a little bit more compassion, and a little bit more empathy.  It will go a long way.

Mom's are funny

Haha.  This made me chuckle, then snort, then nearly choke on my gum :)


http://www.scarymommy.com/parenting-it-doesnt-get-better/

Side Tracked Home Executives

Years ago, when I had sissy, my Mom gave me some books called Side Tracked Home Executives.  They talk about a routine to keep your house cleaned and organized.  I read a little, and got distracted with all my surgeries, cancer, and various other health issues.

A few weeks ago, I came across the books again, and decided now would be the perfect time to get started on it.

I have struggled to get things under control since I had Little Man, and have been feeling overwhelmed since we moved.  I am so tired, and it's hard to stay motivated, and keep up with things.

I tweaked their system a bit, and simplified it, but overall, I have been really happy with it.  It's a great feeling to go to bed each night, with the majority of the house clean. 

I would definitely recommend it to anyone struggling to come up with a routine that works for them. 

http://blackflipflops.blogspot.com/2010/09/sidetracked-home-executives-card-file.html

CF Scare

For the last month and a half, we have living with the scare that little man has cystic fibrosis effecting his pancreas.  Did you even know there was such a thing? I sure didn't!

It has been pretty scary.  CF means a life of illness, pain, and an early terrible death.  I haven't slept (not that little man would let me anyway), and have been sick with worry.

I was pretty ticked off to find out, when I called to schedule his testing, that the craptastic GI we saw before this new one, tested him for it, but didn't tell anyone, or put it in any notes.  A YEAR AGO! They found it in the notes from the lab.  I am upset that he didn't tell us that he already tested for it, or that he didn't have it.  I am greatly relieved that he does not have it.  The GI thinks he still has a pancreatic disease still, just one that is less terrible than CF. 

More to come on that...

In the mean time, no church til Spring, no Nursery for another year, he'll be on special formula only, for AT LEAST 6 more months (2nd birthday), but probably until he is 4, and he is now on 10, yes, 10 meds daily.  My poor little man!

Beginning again...

I gave myself a week off from my diet/exercise for the holiday... I gained 10 lbs. No lie.  I actually did.  Sad thing was, I ate pretty healthy....

So I am at it again, calorie counting, and working out as much as I can.  We'll see how it goes.  Hub's family is doing a biggest loser contest for the next couple months.  We'll see how it goes....

Nativity Nightmare

On Christmas Eve we attempted, and failed to act out the Nativity with the kids.

It's funny now....

What I'm listening to....

If you don't who Matthew Mayfield is, you need to youtube him immediately!

What I'm reading...

I don't have much time to read these days, but I took the kids to the library yesterday, and decided to pick up a book for myself.

I'm super excited to read this!  So far, a couple pages in, I am really enjoy it! More to come!

Chi Ceramic Flat Iron Review

If you are going to spend big bucks on a beauty tool, this one be the one area I would suggest doing it.  I have owned this straightener for almost 7 years, and use it EVERYDAY.  It works like the first time I took it out of the box.  I have owned many flat irons and straighteners over the past 15 years, and this has been hands down my favorite one.  I recommend it to anyone who asks.  And, yes, it does work on super curly hair.  Whether it's used on long hair, or even as short as a pixie, I love it.  It hasn't failed me yet, no matter who I have used it on.  You can straighten and curl with this flat iron.  I would suggest buying it online, and saving yourself about $50 though.  You can find it about $100 online. 

Aveeno Ultra Calming Daily Moisturizer Review

As I mentioned before I have super sensitive skin, and since my hysterectomy, I have needed some major moisturization.  This moisturizer is worth every penny (about $17).  I use it everyday before I put my makeup on, and at night when I take it off.  It takes away the redness in my face, helps keep it from breaking out, and gives my skin a more even tone.  Even if I am not putting makeup on, I put this on, and instantly evens out my skin, and helps calm down the war that is raging on it.  There is a face wash that goes with it, that I equally love.

Sauve Touchable Finish Hairspray Review

 

I just discovered this hairspray at my Mom's over Christmas.  As I mentioned before, I am on a budget, so when I find something I love for cheap, I have to spread the word!

The things I love about this are: the smell, the hold, that fact that it doesn't get all crunchy, and the volume it adds to my hair.  I only have to apply it once in the morning, and it lasts all day.

I would only suggest this for a final spray/hold, not for extreme styling, because it does seem to leave a little powdery stuff on your hair if you use a ton, but for a regular end of style hair spray to set it, it works amazing! 

Bare Minerals Review

I hesitated trying Bare Minerals makeup for years.  I worried it wouldn't work for me, and that it wouldn't work like was shown on tv.  My sister in law finally convinced me to try it, and I am so glad she did!

Ever since my hysterectomy, my skin has changed, and I have felt self conscious.  I grew tired of my old routine, and my face would not stop breaking out! I had issues with half sick oily skin, and half extremely dry and painful skin.  No matter my skin routine, I couldn't fix it. 

Once using Bare Minerals, changed my mind!  My skin looked flawless (even though it wasn't!), they had a shade for even my ghostly white skin, it helped my skin clear up, and made my skin look like it belonged to a 27 year old, and not a 60 year old.  I get compliments every time I wear it.

I am not one to wear a ton of makeup, I like to wear as little as possible, and keep it as naturally looking as possible.  I love that I can look very natural, or very dramatic in this makeup.

It did take me a few tries to get down, and not have too much on.  A little goes a VERY long way, and a light hand is needed.  It is a bit of a learning curve to put on all of your makeup powder style, even foundation, but it is amazing makeup.  I will never go back.  I have been using it for over a year, and I am still on my starter set!

It's definitely worth a try if you need a change in makeup, or you have super sensitive skin!

Sauve Professionals Keratin Shampoo/Conditioner Review

To give you a quick background, I am a fully licensed Cosmetologist/Barber/Nail Tech, but that being said, I am a mom, and a wife, and I am on a budget.  I am here to tell you, that I have tried it all.  I can't afford to use the professional beauty products for my everyday use.  So, I have been a search for things that work just as good, for much less $$.

I have been using this shampoo and conditioner for about 9 months.  I was skeptical at first, but I was blown away at how much I love this stuff! I am pretty sure I won't ever go back to anything else! I have super sensitive skin, and my scalp is no exception. I used to have to change my shampoo and conditioner every couple months because it would make my scalp break out like mad.  I have had very few if any breakouts with this. I used it for medium length hair, and continued using it with my current pixie cut.  I have used it for both straightened, and my naturally out of control curly hair.  With straightened medium length hair, I had much more volume, and my hair never looked more shiny!  With curly hair, it was less frizzy, and much more easy to deal with, with more ringlety curls, and less frizzy creeper curls. With my pixie, I have to fight with my curls and cowlicks less, and it works so well using my straightener everyday.  It seriously has cut my hair doing time in 1/2 of what it used to. 

I am addicted to this stuff.  I can tell an insane difference the few times I haven't used it, and for around $3 a bottle, everyone can afford this stuff! I have reccommended it to clients, and family.  That's how serious my love affair with this stuff it.

Put aside your assumptions about Sauve being cheap crap, and try it out.  I don't think you will be disappointed!