goodbye 2012

I wrote this for the title page of my 2012 family album but I thought I would share here... because the truth of our year is an amazing thing.

Looking back over 2012 three very precious words come to mind; answers, healing and hope.

 I feel as though these words are the theme of our year and the lessons and gifts that the Lord has given to our family as we walked through each day and sought His face in the many aspects of our lives.  Some of those aspects pretty complicated, but yet; not complicated for the God who loves us with such an incredible unconditional love.

 Our year began with a huge dose of healing. It took me several months to truly be on my feet again and able to handle everyday life after the hysterectomy right before Christmas in 2011. I spent most of January in the blue wing back chair, hurting, longing and waiting to be up and around and feeling well. But once recovery came; oh the purest delight to be free from constant anemia, constant nausea and fatigue.  Finally!!! I could be a mommy and a wife again.

 Then began answers, years and years of not knowing what was wrong with Carter J, years of medical tests; diagnosis and medications all came clear.  Carter J was evaluated and diagnosed with Sensory Processing Disorder.  Things became clear all these symptoms we had been dealing with were a direct result of a nervous system disorder. Thus, OT began and in understanding his needs healing in our hearts began. The asthma is still there, silent most of the time and the seizures are gone unless he has a peanut or eggs… healing.  We love this child SO much; so very much.

 In the process of gaining answers for Carter J we also gained answers for Tayelan; and he began therapy as well. He is the opposite of Carter J in his sensory needs in that he is a sensory avoider where Carter J is a sensory seeker.  Taye also has very serious Praxis issues which make everyday tasks ten times harder for him to complete than his brothers. But he has worked so hard and is getting stronger and more confident every day.

 Perhaps the most miraculous of all was the news that the MRI showed spot on Caleb’s brain was gone! What pure delight to see our son set free from the medications that have both protected and yet hindered him for 3 years. We had been told the spot would never go away. We had been told it might grow; but not so… Our Lord healed him. He removed the spot from our son’s brain!

 In September we took a trip to the ocean. This was such a source of healing for all of us as a family. We truly have been though a lot over the years and to deny that would be to deny the testimony the Lord is building into us.  The trip was such a treasure. It was an opportunity to get away from the normal everyday things and stop and focus on each other, on the Lord and on healing that I didn’t even realize was needed.  What a treasure it was to stand on the edge of the deep and see God’s mighty hand displayed in answered prayer as I watched our beautiful five children play and revel in the beauty all around them.

 Caleb was with us, epilepsy had not conquered or taken him. Jaden sang and played with joy and delight as always. Tayelan understood his sensory needs and cared for them, he enjoyed himself, he was beaming so much of the time a real unhindered smile! Carter J is alive, which in itself is beyond words incredible, but even more than that we understand him and can help him understand his world better each day.  Evelyn…. How does one capture that in words? To see her pure curly delight in the ocean, the waves, the sandcastles, the dolphins and crabs every little detail she could take in. It was the finality of the journey to bring her home. It was incredible joy in returning to a place covered in grief and filling it with joy 4 years later.

 This journey through the year also brought incredible hope. Each new way the Lord displayed His love and His hand in our walk only served to reignite and build hope. Hope that He is in control. Hope that He loves us and hope that He will one day bring our beautiful daughter Lydia home to us and that day will be in His perfect timing with His perfect love covering it all.

hi!

I hope and pray that everyone had a delightful Thanksgiving!

Ours was quiet. Quieter than we'd planned on. 

The flu/viral thing hit our house starting late Tuesday night before Thanksgiving when my hubby went down, by Friday every one in the house was down. 

Both hubby and I were sick for Thanksgiving, 

I've joked that we spent our day seeing who could cough the most or moan the loudest.

I felt yucky but not bad enough to banish me to bed or the couch. 

In my fear of being laid up sick (something I've come to DREAD)

 I probably pushed to hard and cleaned and decorated our house for Christmas over the weekend. 

By Sunday night I was bad.

I spiked a new fever and I had so much trouble breathing I had to use my inhaler about 4 times. 

I didn't go in because I was already on antibiotics for a sinus infection. 

But by Tuesday it was getting scary bad.

SO, I called the dr and explained what was going on, they said it sounded like I had some pneumonia going on and called in a super STRONG new round of antibiotics (only 3 pills) 

I'm back on my feet and going full speed again (though still coughing a lot)

In the midst of my being ill, Evie thought it would be a good idea to stick a cashew up her nose!

I worked and worked to get it out

I called the doctors office and they told me a few more things to try, to no avail...

It was NUTS, that cashew was firmly in place... What a booger! 

okay, sorry, I just can't help myself.

Anyhow, I was bad enough that I couldn't drive, so a dear friend (hi K!) Swooped up Evie and drove her into town to hubby so he could take her into the dr to get said cashew removed.

Well, a few minutes from the doctors office she sneezed and Whalah!

 Cashew!

Are you kidding me?!
 Sheesh!
All that drama for an outing with K and a visit with daddy.

It was rather reminiscent of a little girl who pretended her arm was broken so she could "ride daddy's car" 

She is a spitfire that one!

This has also been a VERY big week for Carter J, hence my absence from blogland...
between being ill and being at appointments with Carter... I haven't even turned my computer on!

Anyhow, Yesterday we began the process to get his Autism screening done and a dyslexia evaluation too.

Yesterday's portion was sort of an intake as well as a speech, language and comprehension eval.

As I thought, he is slightly delayed in speech,
very delayed in comprehension and we've definitely
got a start on to either rule in or out high functioning autism.

After today's appointment with the Eye doc
 (another step to get to the dyslexia eval.
) I am more convinced than ever that there may be some autism going on.
 Maybe not, but wow, he just didn't do well with it.
I won't go into detail but he had a complete and total meltdown,
screaming hysterics and then shutdown where
he just sat inside his "body sox" and rocked
 and moaned and if I touched him he would scream. 

It was pretty awful. Today has been awful. 

Next week marks the last two sessions that our insurance will pay for for
Taye's Occupational Therapy.

I am however THRILLED that our OT has offered to list our boys as selfpay
 and they can still attend once a month for a longer session together. 

WHEW! I'm not as on my own as I was beginning to feel!

 Scary stuff there!

Something I haven't mentioned yet is that Evie is also exhibiting some signs of sensory,
not bad, mostly auditory defensiveness, anyhow,
 we are currently praying as to whether or not it's time to list her for Occupational Therapy as well.
 Makes me smile to a degree that the Lord has given us this...
How amazingly planned out is it that our
 adopted princess would have some of the same physical issues her big brothers have.
God is good to place each child into the family they belong in, that is all I can say! 

We know exactly how to help her out,
and her mommy is a passionate advocate for her ALWAYS! 

Oh yes, and our wonderful news below!!
 Caleb has begun to be weaned off of the seizure meds, no seizures yet!!
 Good news!
Praying it stays that way, certainly ready to be done with this transition however,
it is NOT easy on him to decrease the meds.

Jaden, is great, he's his happy go lucky self.

Jaden is our minstrel,
shouldn't every family have one?
You know the child who sings everything that happens LOUDLY!
Yep, that is our Jaden, he narrates our life in song. 

He's becoming quite the piano player too...
If he starts carrying a stringed instrument I'm pretty
 sure we will all loose our sanity with his narrations of life in this crazy house!
 hahaha...

Goodnight friends!

Praising the LORD!!!

In TEARS!!! This morning Caleb had

his annual EEG, and guess what:

 People, God is SO good and so real!

 A few months ago Caleb had his 4th

 MRI and the spot on his brain we 

were told would never go away but 

only grow was GONE, unexplainably 

gone. This morning his EEG came

 back 100% clean!!!! Things look so 

great that Caleb's epilepsy is healed, best of all... He gets to

 stop taking the horrible seizure medication!

WOW

Caleb's neurologists office called and guess what... The spot on his brain indicative of an oxygen deprivation spot. The spot they told us could not go away, but only possibly worsen.  

Is GONE. 

Praising the Lord this day that our son no longer has an abnormal MRI reading but a perfectly NORMAL brain! This is HUGE!!  I am SO thankful for some truly amazing news. 

He will have to remain on his epilepsy meds for the time being however, because a few months ago he did have a fever induced seizure. He has to go one full year with no seizures before we can attempt weening him off of the Keppra. He will still have an EEG in August as well. 

we're going back....

 This post is going to sound completely crazy coming from a girl who is sitting here munching down a lovely plate of thick sliced organic nitrate free bacon, hash-browns cooked right beside the bacon and a large mug of sugary Chai topped off with milk.

 It tastes really good. I LOVE my chai and bacon... seriously, if I could I think I'd eat that for every meal.

 But then I'd feel terrible! 

Which is what brings me back to the title.... 

We're going back...

 On the diet we were on last year at this time. (and then some)

 Overall for the past year I would say I have learned INCREDIBLE amounts about nutrition. I'm still learning. But I wanted to share here the overall sum up of what we personally have experienced in the FOOD department of life. The American diet is going to kill us all.  Seriously, that is pretty much my sum up. 

Not only that but our diet is depriving others around the globe of food.

 American as a whole, we are selfish and we don't even realize it. 

(don't worry, I have info to back that statement up.) 

Remember a year ago in January... Maybe you don't, but I do. I always will.

A year ago in January I was told that my medical condition was beyond SERIOUS. 

I was suffering from liver fatigue rapidly turning into liver failure, I had six weeks to bring my liver enzymes down with diet or I would have to begin the process of much more serious intervention.

I was told that I have an auto immune disease 

I was very VERY anemic (dangerously)

I was suffering from several serious vitamin deficiencies.

I had no immune system

There was more, but need I say more?

I was fading away, slowly but surely if I'd not found my Dr. of oriental medicine I am completely convinced I would have ended up in a beyond reparable dire emergency, if not death.

It was a crazy week when that news came

INSTANT 

Lifestyle change.

Grocery trips made while battling constant fatigue and dizzy spells, trying with all my might to think straight while I selected foods that I'd never purchased before, Vegetables I'd heard the names of but never actually tried in my life.  My head spinning as I realized the ridiculous amount of things that contained gluten.

I stopped using any soaps with sodium laurel or laureth sulfate, or parabins, or any sort of chemical make up at all. The adjustments to all of this in one week were HARD. 

But once my body got used to not having the constant sugar blast to keep me awake my irritability levels dropped incredibly, my energy slowly returned and wasn't this insane roller coaster ride anymore. I lost 38lbs in 3 months. I went in for my blood draw and my liver was NORMAL! wow! 

I changed our family over too

Remember all of Carter J's health issues, Asthma attacks 3 and 4 times daily, absence seizures, vitamin deficiency and more... Yep, on the diet he improved SO much, then after 5 years of this child's life we discovered egg and peanut allergies, eliminated those along with Carter J's AWFUL amount of steroids and meds and guess what...

Seizures and asthma GONE.

He has had only a few Asthma attacks in a year and it was after HUGE fires filled our state with thick smoke and the horrible yellow jacket attack.

Things for ALL of our health incredibly improved, until I got a little lazy.. Started adding back in some foods "just to see" 

Thought eh, I don't see a HUGE difference. So we returned to them. The holidays came and I just didn't feel like being strict on our diets. I could feel my energy levels slipping away again, not badly but I was wearing out easily.  It's really easy as a Thyroid patient to ride everything off on that. But then I started noticing a lot of bloating ect.

It struck me over the past week. We are back on the average american diet. 

My almost year long fast from visiting fast food restaurants came to an end because we were to busy, I was to tired to cook ect. 

(local very justified in my mind restaurants mind you... I DON'T do Wendy's or McD's ICK) 

BUT... in reality, even the local ones are still bad for you. Yes, even their salads

Yesterday it was really bothering me

I've noticed Carter J's sensory issues flaring up, he's having bloody noses again and he is pale with dark circles under his eyes.  I have been having issues during this recovery, obviously most of them CAUSED by major surgery, but yet, I think worsened by the big amounts of beef, gluten and sugar ect we've been eating.

So while I was sitting here having a BAD pain day I finally took the time to watch

  "Forks Over Knives"

a documentary I think every single person in America should be required to watch.

It reminded me of all that I learned from our Dr.  of Oriental Medicine. 

It reminded me of how GREAT I felt on a good whole foods diet.

It rekindled my love for all things nutrition and healthy.

It made me sad that all I have in my house to eat right now is meat.

We are going to go back onto our VERY strict diet, I'm going to take BACK off the 18lbs I've gained back during this re-laps into eating "average".  The big difference this time around is that in addition to eating healthier and MORE veggies, we're going to take it a step further.

A year ago my hubby tested back boarder line high for cholesterol, that scares the life out of me. More than my own health issues. With our old diet he'd brought that WAY down.

I am going to take meat out of our diet (for the most part) 

Yes, we are going on a Whole foods plant based diet.

I am learning and if you watch Forks over Knives and do your own study, meat and casine products are REALLY not good for us. It is NOT the best source of protien. Beans, grains ect are.

This really makes sense to me.  Really, if you think about it, look at Creation in Genesis. God created Adam and Eve, in the garden. Their bodies were fearfully and wonderfully made, to eat the "fruit" of the garden.

Meat didn't come into play until the fall of man, when death entered the world. 

I'm not saying that this is the ONLY way to eat, I'm saying that I think we should REALLY take a good look at the research and at our own health. When our diets were mostly plant based our family's health problems disappeared. When we jumped back into the average eating habits we are all starting to get sick again.

Oh, and the world hunger thing

If we took all the grain that is used to feed the cattle to feed Americans and gave it to the starving people around the globe, it would EASILY feed EVERYONE.

Our problem isn't a lack of food, it is poor use of what we have.

That breaks my heart.


****Edited to add****
One clarification I think I should make here, I'm not saying meat is evil, or wrong, just that we eat TO MUCH. I will continue to use very SMALL amounts to flavor our foods but not as our main course.

what a week

Our week started out like this:

Carter J accidentally tripped and flipped off of the top bunk in the boys room and landed on his chin/face on our concrete floors. It was AWFUL.

I am SO thankful at the Lord's goodness, as Monday was the only day this week I have had help here at home, I had two very special young ladies here helping me out with the kids & household stuff, they were life savers, they were calm, collected and super helpful in helping me getting the blood all cleaned up       (because he put his bottom teeth through his chin) and calming him down while I assessed his condition which I almost immediately realized was BAD.

I quickly called my dad and asked him to come for Carter J (since I still couldn't drive or lift)  The ladies got his shoes on him, coat and car seat, they carried him out to the car and I had my dad meet my husband part way into the city so that there would be NO lost time in getting Carter J to our pediatrician.

Our ped sent him to the ER for xrays, they checked for broken neck, spine and jaw, whiplash and I'm sure other things I didn't know about while I sat in my recliner at home and cried and waited... Hubby texted me pictures which made me cry more. It was the most utterly helpless feeling in the world to have my child in a neck brace in the hospital and be confined to a chair from surgery. Words don't cover it in any way. I felt SO useless!!  Finally all the xrays except the Jaw came back great, no breaks... It is a miracle that he is still alive, and not paralyzed. I am still praising the Lord for His goodness. 

The Jaw xray was inconclusive. So we've spent the week waiting and watching. 

He slept most of the first few days and was in horrible constant pain, wouldn't eat anything thicker than jello without tears. So our dr put him on Tylonal3... OH wow... THEN he went into sensory OVERLOAD.

it was awful, jumping off of everything, climbing, aggressive WILD CHILD with a mommy who is down for the count and no help it was a HARD few days... the tylonal3 landed in the trash REAL fast, I don't think codeine is something he can take.

THEN today the day we have been waiting for all his life...

okay, knowing we were waiting for it since June.

Carter J had his therapy Evaluation for his sensory issues.

I know it sounds crazy, but I am SO excited because he does indeed have a Sensory Integration Disorder!

I'm excited because NOW we will be able to help our son, SO many things were explained today and I am SO full of hope! He loved the name of the therapy place so he was pretty excited to know what it was all about, he kept saying he imagined it was going to be like "pizza planet" on Toy Story.

This is the gym area, it is a Carter J sensory paradise!!! 

He was all about what was called Crashing. (Jumping off a HIGH platform into tons of pillows) 

We learned SO much, I'm on overload, but specifically he has Proprioception issues, Vestibular system issues, sound/auditory and it seems like there was more,

 but I'm REALLY overwhelmed and need to debrief with hubby. 

In other words, Carter J NEEDS/Craves the smashing, climbing, banging, clanging, wild, loud, brute force type of sensory input (ummm yeah, Carter J!!) to help himself handle all of the overwhelming sensory information coming at him that his body doesn't know how to process 

I am so excited because we got to watch the evaluation, watch the way she worked with Carter J and how he responded to her, she would stop and mention things to us as she had moments and then at the end told us a good idea of the plans she has for him and his therapy. 

 We can help our child! I just can't believe it!!

 I cannot and probably would not try to put into words for you how hard life has been trying to understand him, trying to parent him and feeling daily like the worst failure in the world. Having to learn myself that his impression on others has to be something I don't care about. 

Learning to understand that his behaviors are often not disobedience but sensory responses.

 Never knowing how to communicate and parent  him effectively.

Therapy is going to help us do that! 

(I just haven't felt like I know HOW to be his mommy well enough)

Praising the Lord for Carter J, for his life that the Lord has preserved more times than I could count from sickness and now a major fall.  Praising the Lord for the help we've been trying to gain for him for years but never realizing where to find it. It's now in our grasp and THAT my friends is an incredible feeling!

I LOVE my child fiercely. I am SO excited for him.

In the News today...

What's happening in Mosey's house today..  The headline topics are as follows:

Evie's cottage deck has a fresh coat of stain, making it of course a high value property, real-estate prices may begin soar in her neck of the woods. 

Construction of the Castle remains on schedule with rock floors and draw bridge complete, meaning these royals will soon occupy their new abode.

One of our top notch citizens had a birthday, upon turning seven he announced his plans for the future saying

Quote: "when I grow up, I'm going to be an old man who does NOTHING." 

His parents couldn't be contacted for comments as they were laughing to hard.

Krispy Kreme donut popularity is on the rise

In other news, the fall fashion line has been released. 

Some items seem made JUST for this little model considering what they say.

Some wonder if this new "fresh out of bed" hairstyle will become a trend.

The most heartwarming story of the day is that this young man has finally gained some weight.

Yes, while the rest of the nation is trying to loose it, this guy is just blessed to find it!

After a year of no gain, even a bit of loss Carter J is finally weighing in at a whopping 33lbs!!!

He might actually wear 5T cloths this fall. 

Breaking news; just in: It seems that some sort of giant toddler has destroyed downtown legoville... We'll report as more info on this tragedy unfolds.

In other news: a big girl pillow has graduated one little girl from status of baby to toddler, yet another reminder of how fast these children grow!

And last up on our report for today, Caleb's EEG came back NORMAL!!  Meaning that his epilepsy is under control with medication. No changes in our treatment plan just keep on keepin' on.

Thanks for tuning in today.

Don't forget to praise God for the blessings you have and be thankful!

All things work together for good....

Poor guy, completely wiped out from being up most of the night to prepare for another EEG test at the hospital.

The test went well, we don't have any results and won't until either the doctor calls or we have his next 6 month appointment.  Caleb is actually doing pretty good. No big seizures, however he has been having some breakthroughs which make him feel like he is going to have a big one but then they never progress very far.

Thus the second EEG to see if there is still seizural activity, which would just mean either an increase in his dose or a change of medication... (PRAYING we don't have to change meds.) He is finally adjusted to the Keppra and life is moving smoothly again with only minor side effects. 

 I see so much growth in this boy of mine with all that he has to face, he has compassion for others and a deeper reliance on the Lord for what he goes through. 

He learns every time I seizure begins to come up to "cast his cares upon the Lord" 

As a mommy it is painful to watch, but yet I know that the eternal good in his heart outweighs the temporary physical trial. I love my boy, I am so proud of how he has handled the diagnosis of epilepsy.

I am proud of how he has instantly taken Carter J under his wing and encouraged and protected HIM through his diagnosis of Epilepsy. 

Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose

more appointments, more tests, more questions...

"Opening the hand to receive the moments. Trusting what is received to be grace. Taking it as bread."

"Eucharisteo, remembering with thanks, this is the bread. We take the moments as bread and give thanks and the thanks itself becomes bread. The thanks itself nourishes. Thanks feeds our trust."

"Stress can be an addiction and worry can be our lunge for control and we forget the answer to this moment is always yes because of Christ." 

~Quoted from: 'One Thousand Gifts' By Ann Voskamp 

I called a few days ago (because I'm incredibly impatient) and got the results of the MRI

Thankfully we are currently praising the Lord that there are no tumors or oxygen deprivation spots on Carter J's brain, everything came back looking perfect like a happy healthy little boy brain.  This is a huge blessing and we are very happy for this news, it is a deep breath of relief to know that all is well. 

But this knowledge also creates more questions. So what is causing the seizures, will he have to deal with the epilepsy his entire life or is this a passing thing, what of his asthma and on and on and on...

We found ourselves back at the doctors office again yesterday, this time to bring our concerns about Carter J being on the autism spectrum to our pediatrician.  I found myself becoming nervous and feeling that white knuckled grasp for control as I drove down to the office (45 minutes away)  I kept trying to pray, trying to remember what I wanted to say and what I didn't.  Peace, can't I just have some peace.... 

Thanks, remember the thanks, remember Eucharisteo!!! 

name things, remember, name things

mentally I began taking note of things to be thankful for

the clouds in the sky, the river, the sleeping boy in the back seat at last peaceful...

 As always our doctor was amazing, she listened, she encouraged and most of all she is sending us to get our baby evaluated, I was so afraid of not being validated, or being thought less of on my way down there, afraid that I would be thought a failure or a bad mom.  But she completely validated me and agrees that there is a GOOD possibility that he is on the spectrum but then amazed me and went on to say that even after his testing, he doesn't come back on the spectrum it is very obvious to her that he will still need some therapy, to help him handle things better, to help him grasp and learn concepts, be able to function in public and such. 

 I am SO excited, I feel like we might actually be on a path to real help for our precious boy. 

I don't know when, I don't know where but we will be getting that phone call soon.

Stress CAN be an addiction

It is my first inclination when things are unknown, 

how do you talk to your doctor about problems with your child while your child sits right there?!  My heart is quick to find every single tiny what if and fear it.

It is a war, a war in my own heart and soul to remember and thank God for EVERY thing... 

But when we get there...

That peace we long for arrives.

Thankfulness in ALL things...

Long doesn't even begin to describe our day.  I knew it would be hard, we've been here before. But even sometimes going in eye's wide open and prepared... STILL doesn't prepare you.

 I am so tired I can barely hold my eyes open so bare with me as I try to give a summery of our day.

Actually this day started yesterday, or earlier in the week even. Because there are MANY forest fires burning near us we had to go into lockdown to ensure that Carter J would be breathing well for the MRI today. I couldn't bare the thought of having to reschedule a third time when everything in preparation is really hard on him.

 I was feeling very discouraged that the appointment wasn't until 2:30 in the afternoon and I was pretty uncertain how on earth our day was going to be any kind of sane with him not allowed to eat all day.  I was actually praying about it when the phone rang yesterday.  It was our nurse, (our amazing wonderful I want to bring her home with me nurse!!)  Anyhow, she had also seen that Carter J was on her schedule for today and it had been bothering her all day that he should really come in earlier, she'd been debating rescheduling all together when the patient in the first time slot of the morning canceled. She called us right away, I rearranged things (including rescheduling Caleb's neurology appointment) so that we could get Carter J in first thing.

 The next HUGE way I see the Lord's hand in all of this is that last night our church held a seminar for the Sunday school teachers on Autism.  (this is something I have not mentioned but something we are fairly certain that our Carter J may have "High functioning".)  I only share hesitantly because I do NOT want our son labeled, but I also cannot begin to imagine how I could tell this story without this part, because it is HUGE.

 As we listened, The Boss and I were comforted, encouraged and equipped.  One of the things that this lady shared was about using visual aids and laying out a schedule for everything to help a kid cope with daily life. She had visuals for everything, all the way down to how you stand in line. And it hit me that I could do something like this for Carter's MRI appointment, that perhaps it would make a difference for him.

 It's hard to keep the tears from coming as I type this out... The first try at his MRI was completely out of control, INSANE... My heart as a mommy broke that day as I watched my child incapable of communicating his fear and feeling like his world was closing in on him. He was SO scared that he was violent, I really can't say.  The nurse assured me over and over that she'd seen worse, but I have NOT!!  (did I mention she is amazing)

 Anyhow, last night I stayed up late working on a picture list for Carter J, starting with the car ride down and ending with him falling asleep, using clip art and pictures of himself.  I wrote out what would happen step by step next to the pictures, even what objects would be in the room ect...   The nurse swiped it from us at one point to make a copy, she was BEYOND amazed at the difference in his behavior, and loved the idea (we gave full credit to the amazing woman who spoke last night)  He NEVER cried during the pre MRI stuff, even for the IV, which is just amazing to me... I am still shaking my head at how well things went, he was proud of his list and had his nurse read it and work through it with him... (SHOCKING since he NEVER talks to medical staff)

 I just can't tell you how huge this is in my heart. I have felt SO defeated, not known where to start to help him, felt like I'm not capable of parenting, that I am a failure and on and on....  (there is so much more wonderful things that came from our attending that seminar last night, but for now this is what I'll share.)

 Anyhow, everything was looking great, we got him wheeled upstairs to the MRI room and they began to sedate him, everything was going good. They sent us out to the waiting room once he was asleep and moved him into the tube.  About 5 minutes later I could hear him screaming...  Both of us sat there with broken hearts. There is nothing like knowing your child is scared and not being allowed to go to him. Every scream just ripped me to bits. (I sat there sobbing, feeling hopeless and asking the Lord how on EARTH was I to find something to be thankful for in this)  When an elderly gentleman sitting across from us asked if we had a small child in there. When we said yes, he told us we looked like the saddest two people on earth. I can't tell you the compassion I saw on this man's face.  When his nurse called him back he turned around and said "I'll pray for your little one while I'm back there."

 I went from crying tears of agony over the inability to comfort my baby in a situation I KNEW had to be just beyond awful for him (he can't even handle the noise from our air-conditioner) To crying tears of joy because God heard my plea and reminded me that HE is in control.

 Eventually (after 3 times of him going out and waking up) they had to call in an anesthesiologist and put Carter J into a deep sedation.  20 minutes after the anesthesiologist went in the MRI was complete and we followed behind as they wheeled our sleeping boy to a recovery room.

 LONG story short, he slept for hours...  After being at the hospital close to 7 hours we finally got to go home...  Once home he has thrown up a few times, BUT, seems like he is doing okay now.  We'll need to wake him a few times during the night, but... Thankfully we are DONE with the MRI and I pray that it gives us good SOLID answers.

 Above all, I want everyone to know, we CAN be thankful in all things, even though this day was emotionally and physically draining, even though if I talk about it I could probably burst into tears... GOD is faithful, He is in control, no matter what the results, He holds our baby in His hands... I am so thankful for His reminders of that throughout the past two days.

MRI day, down the tubes

 As you can imagine, there is a lot of build up to any sort of test on your child. Especially your five year old who is constantly having tests and going to the doctors.

 Today we prepared and headed for Carter J's MRI. As I anticipated his pure hatred for all things medical reared it's head and getting his weight, height and oxygen levels was a nightmare.

 No, REALLY... I just can't even explain it. The nurses are very understanding, I don't think I could handle being a pediatric nurse. But this lady (who we also had with Caleb's MRI in the first few months of the year is just awesome)

 Anyhow, because of the smoke still hanging in our air, Carter J has still been having some trouble, not horribly bad, but... unfortunately bad enough to put a delay on his MRI.  To say I am discouraged would be a gross understatement. I am just shattered.  Today was SO hard and now we get to do it all over again.

 I wish I knew how to help him cope better with what he is going through, it makes me feel like a helpless failure.  Because I can't fix this thing for my baby.

 Anyhow, the doctor was concerned that because he could hear Carter J wheezing if we gave him the sedation medications he would end up worse off than ever and would most likely end up having to spend the night if not longer in the hospital because of it.

 Of course we want what is best for him and agreed not to continue with the MRI. But OH it is frustrating!

 Please pray for us, right now I simply don't see anything clearly but through a fog of emotions. I am tired, frustrated and struggling and worse... so is Carter J.  He needs answers and he needs help, now that will be delayed until June 30th.

Even when my heart is torn....

I will trust You Lord...

Last night as I was cleaning a pool of blood off of my hallway floor my heart finally caved.  

I sat on the hall floor and just sobbed, letting loose the flood of emotions I've been bottling up for months now &

I prayed silently and with all of my heart..

 WHY LORD?

Why am I daily watching my little boy fade away?

Why can't we find answers?

Why can't I help him?

Why do I have to watch helplessly as my baby goes through a seizure,

his body rigid and jerking?

Why does it seem things are getting worse not better?

He has the labels: Asthma, Epilepsy

But they still don't feel like answers

they don't explain the horrible endless bloody noses

they don't explain the fatigue that my five year old faces on a daily basis

or the frustration that builds in him until he is seething with anger over the smallest things

And of course there is ALWAYS the question, the why epilepsy? What caused it?

We know what caused the asthma, but epilepsy too?

Just look at his picture, that is not a picture of a healthy child. 

Instead of gaining weight like a normal five year old

 he is loosing it

instead of running and playing and laughing

he is quiet, solitary, sleeping and crying

instead of learning and growing in his knowledge 

he is discouraged and stuck

Here is my point, this honestly isn't a "why me" blog entry.

It is a realization that God is beyond faithful to give us every single moment we have.

He knows the day and the hour when our lives will end and... we don't.

It is our job to be faithful with the time we have, living each day to the fullest... Not just frittering our days away on nothingness.  But using our days for faithfulness.

Don't wish away moments...

not any moment good or bad

I look at my son, lacking color to his cheeks, energy and strength in his body

I have lost him through seizures, 

I have faced loosing him permanently through illness

I have seen death painted on his face

and I am telling you

don't wish away a single moment with your children

with those you love

cherish everything

cherish never going to the bathroom alone

cherish the opportunity to break up sibling rivalry and use it as a training tool

cherish being woken at night, because it is an opportunity to hold them

cherish the mundane 

cherish the extravagant

make EVERY moment count

every moment is a gift.

I have utterly failed my Carter J as I have not trained him to face his life this way,

to be thankful in adversity

and now I see him angry 

angry at doctors, angry at nurses

angry at me

I don't know the day or the hour that my son may be gone

he may live to a grand age of 101 years old

or 

he may not

So I am going to cherish

Every

Single

moment

Which is why I am going to turn off my computer for a week,

 to more fully focus on my children

 and without distraction

cherish them.

Medical ID bracelets

For about a week I've been almost obsessive about getting Caleb and Carter J medical id bracelets. 

I've been studying and shopping online, figuring out exactly how to maximize the info in a very small amount of space. Trying to figure out how to get them here quickly before our Church has it's VBS program and my kids will be away from me.

 I know it may sound just crazy that I've poured so much time into this, but the desperate need intensified when on Saturday evening this weekend Carter J had several absence seizures strung together. I thought he was standing beside me and all of the sudden he just wasn't. 

It only took us moments to find him (we were at a picnic ground in the mountains)  But when I did find him he couldn't answer me or even recognize me because he was in the middle of a seizure, he was tangled in thorn bushes and had no clue why he was there.  Those moments seemed like an eternity.. 

So I decided to do away with the idea of ordering from a company online and headed to the city yesterday on a mission to FIND and get bracelets, what if he wanders off in a public place and can't even tell anyone his name, this is REALLY important.

I finally found them and they are now on both of my boys. I am so relieved, I can't even explain the weight that lifted knowing that in the event that one of them is hurt or one of them has another absence seizure they have that vital information with them.

I had their names engraved on the front of the bracelet and on the inside I had their diagnosis and my and my hubby's cell numbers.

Ah, relief....

My little miracle

  Today we had another appointment for Carter J. The moment he learned that we were off to the doctor again he became sullen and dejected, angry even.  He begged and pleaded with me to let him skip the doctor and go to the lego isle at Target instead.

 Every time I have to take him to a doctor my heart is torn out a little more. He has been through SO much. I was encouraged by a friend recently to share some of Carter J's story here on my blog. It's a story that I don't touch often, mostly because when I try to, I am at a complete loss for words. How do you place words
on emotions that run so deep? But the more I thought about it, especially after what we learned today... I got to thinking about what a testimony God is building into my little "bean boy".  I pray desperately for him, I fear for him more than my other children, both body and soul.  But I also know that God is building an incredible character in this little man. Seriously, according to the "medical" world, Carter J should have died, not just once but on several occasions.   It began really back when I had Jaden in 2002. My labor and delivery almost resulted in his death, and because his heart had stopped during labor they had to do a VERY emergency c-section, resulting in what I pretty much call a chop job. After waiting two years before Taye came along, I ended up with yet another c-section. By this time I couldn't find a doctor who would even consider allowing me to attempt a VBAC. (I've learned now that this most likely saved both Carter J and I's lives.)

 After his delivery I was heartbroken to learn that upon opening me up they could SEE Carter J through the scar tissue in the uterus, and yet I was amazed at God's goodness. The doctor described it as a perfect window to watch him through. The cord also wrapped around him. I remember hearing a GASP during his delivery and the assisting doctor's face as he assured me everything was okay. (I know now it wasn't) Had I even waited to term or gone into labor it would have ruptured.  At birth everything seemed great, although I can't begin to tell you the suspense after he was born and there was PURE silence in the room.  FINALLY he cried... I learned that he was asleep when they delivered him and it took a little swat to wake him up. (hehe)

 Everything was wonderful, my fourth time around the bend I felt like I had it all under control and everything was going great when at 3 months old Carter J developed a cough. I learned at that point that we mothers ALWAYS have something new to learn.  By night time he was in pretty bad shape. I took him back and laid him on my bed when I suddenly realized his lips were blue. This night became the longest worst nightmare one can imagine living.

 We arrived at the ER and were instantly whisked right past all the other patients in the waiting room. I remember them hooking him up to oxygen and other wires and cords, I had to relearn how to hold him.  We felt pushed aside while they worked on our baby.  After the craziness of our arrival began to calm I remember a doctor coming to the bedside where I was standing while "the Boss" held our little boy, all wired up to machines with beeps and buzzers going off around him constantly. The doctor asked if I wanted any coffee or even a rocking chair or something.. He looked helpless, I'll never forget the look in that ER doctors eyes. I still wasn't understanding the gravity of the situation, I was imagining that we'd be going home soon after they "fixed" things.  I had NO RSV education or experience.  I told the doctor no thank you, he wandered away slowly.

 After about 5 minutes he returned with a rocking chair and insisted that I take it. Then in a very low tone he made it clear that we would either be there for a very long time or that we might be saying goodbye that night.  I remember going numb. I couldn't think. I couldn't cry, nothing just stunned. I sat down in the rocking chair and couldn't wrap my head around it all. Our night turned to days, there was a shortage of pediatric beds in our city and so we stayed in the ER for DAYS! The hustle of the ER began to get to me, the constant alarms, the constant sobbing from other parents. The heartache and loneliness.

 We couldn't lay him down, if we even set him down for moments his oxygen would plummet into the teens. FINALLY they had a little glorified closet open up, no more sitting with only curtains separating us and the other patients.  That room had two beds in it. We could finally take turns sitting up and holding him. (although I don't think I slept more than moments at a time even when I wasn't holding him.)

 Rise and fall, rise and fall... I remember the constant prayer of my heart, my bleeding broken heart, PLEASE bring another breath.  One nurse suggested home oxygen care since there was shortage of beds, when I mentioned it to the doctor on shift that day he went almost crazy! He shared with me when he'd been in an ambulance transporting a baby in the same shape as ours and that baby died in the ambulance on the way to the hospital. NO way was he going to allow our baby to go anywhere, not to another hospital and most certainly not home.  

 The next day they strapped me holding Carter J into an ambulance to be sent across town where a bed had finally opened up in the NICU. I honestly have NO idea how long we were there anymore, it escapes me.  Every time they would try to take his o2 down at all he would plummet to the 60's. (good is 90 or above)  But finally they released us to go home on o2, which he stayed on for quite some time.  I have no pictures from the hospital. I didn't have my wits about me enough to take a camera or even think about it until later. Of course then I realized how horrible that "could" have been.

 The first few years after our baby recovered from RSV he was ill more than he was healthy. It was a constant battle, often times just setting a quarantine on our house. TRYING to keep him healthy.  We ended up becoming the owners of a nebulizer and used it frequently.  Spending HOURS of our lives in the ER because he was wheezing.

 Our pediatrician at the time I'm going to be FLAT out honest was AWFUL. She didn't think he really had a problem and thought I was overreacting most of the time. She blew me off constantly. Funny though, every time we took him to the ER they went into emergency mode.

 Finally a little over a year ago I got fed up... I realized that I was working with ER doctors more than our own pediatrician and that things were more frustrating than they needed to be. So, I fired her. We moved on and found an AMAZING doctor who has been willing to work with us and get the help we needed for our baby beans.

He has had many other health issues, besides being sick almost constantly... He tends to be chronically low on vitamins. He almost always looks pale, falls asleep at odd times, doesn't sleep well at night.  He has been tested for leukemia among many other illnesses.  He has had sinus xrays, tonsils and adenoids removed, many many medications  to try to control his asthma.  We've had an awesome set of doctors over the last year and a half, trying to get to the bottom of our baby's health problems. I never leave my house without allergy medication, advair inhaler, xopenex inhaler, and now an epi-pen as well. I don't leave without an o2 monitor and a thermometer.  I have learned more than I ever wanted to learn about spotting an asthma attack. AND as I said before, we mothers NEVER stop learning new things. I know I wrote a while back that what I had believed to be an awful asthma attack with his o2 dropping to 78 was in fact not asthma, it was a seizure.  At the realization of this we made a call to Caleb's neurologist and got Carter J an appointment with her. She ordered up and as you know we had a EEG done. 

 Today we had that appointment to learn the results of his EEG and make a plan. The EEG came back what she called borderline. Basically, there were to "events" on the EEG that appear to be seizures. Located in the right place for the type of symptoms he has when having a seizure. It looks as if our Carter J not only has asthma which until recently (I'll share this in a moment) has been completely uncontrolled.  But he also has epilepsy, tonight we will be giving our baby his first dose of seizure medication. While I hate the idea (because we've not had great experience with this med for Caleb) I also have peace. I know that all the way through ALL of this the Lord has been guiding us. None of this surprises Him. We serve a BIG God who holds EVERY breath that Carter J takes in His hand, but He also holds those brainwaves as well.

 There are moments when the reality of another child with epilepsy hits me and I feel sick to my stomach, but then I just look back at Carter J's AMAZING story, how many times we've been told he might not make it. How many things he has been through and persevered and I KNOW that God is doing something amazing. I don't understand it.  I have in the past felt bitter about it, but yet knowing in the back of my mind and deep in my heart that while I don't understand the suffering of this world, it IS used.

 Is it easy?? HECK NO!  There is nothing like what I am dealing with right now. Carter J has known more needles in his 5 years than most people know in their entire lives, he has NO tolerance for doctors and nurses anymore. He doesn't trust them, even getting him onto the scale at the dr. this morning was a battle.  He is fearful, and I see in that fear another way that the Lord is going to hone Carter's heart to trust Him.

 As a parent knowing my duty to "train up a child in the way he should go" it is very hard to step back and allow what seems to be disrespectful behavior from him. Yet the mommy in me SEES it for what it is, it isn't disrespect it is pure and simple FEAR.

 I want to scoop him up and whisk him away from it all, but I can't... It's not his cup right now. He has such a tender heart to others already. He hears of another young lady who suffers from asthma worse than his and he gets tears in his eyes, he prays for her to be able to "breath easy good".  This trial is building true perseverance in him, and character that he wouldn't gain otherwise.

 The side effects of one of his medications (said I'd mention this earlier) for the asthma have been beyond unbearable. Behaviorally and now we know ALSO physically.  He has been on a daily dose of Advair for quite some time, a daily medication to "help prevent" asthma attacks. For quite some time we have not been happy with the advair because of side effects involving the adrenal glands.  Both "the Boss" and I have been studying feverishly about Advair. I found blog after blog, website after website questioning how "good" advair really is. The overall theme that I found was that people said that Advair helped their asthma symptoms initially but ALWAYS the symptoms worsened after a span of time and then eventually were worse than before they went onto the medication.

 After a LOT of prayer, we decided to go against our doctors advice and take Carter J off the Advair. Before we did so, he was having to have xopenex for asthma attacks/wheezing every single day, many days multiple times.

 Carter J has been advair free for three weeks now and do you know what... Not ONE asthma attack since two days after we stopped giving it to him.  WOW.  I am now convinced it was the advair that was causing his asthma attacks.

 In closing I just want to say. God is faithful, even in the HARD awful things... We have more hard awful things to come, our neurologist has ordered an MRI of Carter's head, this will be with sedation.  Something else that we have on the table is that because of a few things about Carter J's symptoms we will also most likely be referred on to a cardiologist as well.

 "Trust in the Lord with all of your heart, lean not on your own understanding. In all of your ways, acknowledge Him and He will make your path straight." Proverbs 3:5-6