I Married Commando

Mike and I were Winter Cleaning this weekend-getting ready for all the Christmas decor and we came across this book he made when he was 9.

Oooooooooobviously some. things. never. change. (i.e. egos.)

I flipped through the entire book and realized my husband has not changed at all.  I don’t know how he survived childhood…you could tell he was a pill!

But I thought it was cool that when I read this page:

And then we came across this-given to those in Special Ops-

At first I thought it was funny. Then I thought it was awesome 🙂

I sorta see the resemblance….

But seriously…I just thought it was really awesome that he grew up to be who he wanted and that because of this…I get to be a stay-at-home mom which is what I always wanted.

I am sure you can see the resemblance:

Suzy Homemaker:

Me:

What?  It is too me!

But for a little encouragement today, if needed…


The Truth of the Matter

‎”God never hurries. There are no deadlines against which he must work.

Only to know this is to quiet our spirits & relax our nerves.” -Tozer

The truth of the matter is I wrote the last post wholeheartedly believing I could end all of this…

The truth of the matter is we got passed off to a GI specialist because of his lactose intolerance but figured that out on our own before our appointment with him…so by the time we saw him, Caleb was well in those areas…we decided to decline his medical work-up simply because we were very reluctant to have him “go under” when we are not sure what is wrong with him. If  Caleb does have any GI issues-they are not causing the things we do know about Caleb right now and don’t feel the need to “dig” more.

The truth of the matter is-the two doctors we have been dealing with (pediatrician and GI) were calling Caleb a “head scratcher” and, because of that, they were passing off his symptoms by explaining them away individually-instead of seeing Caleb as a whole. But…THEY are the doctors so if they say all of this is no big deal or, in their words…”neo natal hepatitis” (translation: elevated liver enzymes and we don’t know why) and “benign neutropenia” (translation: low neutrophyls and we don’t know why) and “suspected metabolic condition” (translation: organic acids found in urine and we don’t know why) and his Acute Life Threatening Episodes were being chalked up to a virus that he didn’t have…He lost a 1/2 pound at his most recent visit and his doctor said “but he’s not lethargic.” but they are the doctors…I am just the mamma (with a laptop and Google 😉 hahaha)…what do I know…

and when I felt like Caleb was being dismissed I started questioning my own sanity and felt like I was trying to convince doctors that there is something wrong.

Wait….truth…

the truth of the matter is it got to the point where I found myself almost wanting there to be something wrong so I could prove to them that I wasn’t crazy.  That. is. not. where. I. want. to. be. so I just had to take their answers and walk away. Stop everything….stop the search for an answer and rest and wait for Caleb to show something more.

First step: I decided to switch pediatricians…for many, many reasons. ’nuff said. and one came highly recommended from the God-loving neonatologist that oversaw Caleb when he was born.

However-his old pediatrician had already set up an appointment for us with an Immunologist to explain his “neonatal hepatitis” (translation: here, you deal with her!) and I figured I would go to see if she had any other insight.

However, the night I made this decision to switch pediatricians…I got a call from his old one saying that there was a level found in his recent lab work that indicates muscle damage/deterioration/break down.  Muscle damage can cause elevated “liver” enzymes….although those enzymes aren’t coming from liver damage at all!  They are coming from muscle damage….it’s just that they are more commonly caused by liver damage so docs pursue that until they keep coming back empty (translation: scratching their heads) and then run this other test…which is exactly what happened.

So now they can run a test which shows if the damage is coming from his heart, skeletal or brain muscle and we’ll have better direction.

The Immunologist was amazing and saw Caleb as a whole and knew immediately something was wrong and she said music to my ears…”even if this metabolic condition is mild now…let’s figure out what it is so we can intervene before any more damage is done!”.  HELLO!  That. is. all. I. wanted. to. hear. She was awesome.

Then we went to his new pediatrician and he immediately said you WILL be seeing a metabolic doctor!  Thank you!!

I have learned so much in all of this already…but there are couple of things that I NEED to remember…

There are a gazilion metabolic disorders (some more common than others and some more severe than others) and there are other conditions that affect metabolism so this. is. going. to. take. time.

This has been a long year for the Bucks. It was a year ago that they told us Caleb had markers for Trisomy 18 and were sending us to genetic counseling….so I have learned that bad sounding stuff can turn out to be nothing, too.  (you can click on that link to read that story if you missed it).

It’s just, as a mamma, if there is anything we can do to figure out what it is so that if there is anything we can do…then I want to! and if everything adds up to nothing, as it has with all of his markers for Trisomy 18, then I will be ever so grateful!  But I would rather be wrong and know it and have the privilege of humbly admitting it (how great to be able to declare he is healthy!) then be right and not know it.  I need to be at a place where I can be his mamma and the doc can be his doc and now that we are in good hands…I feel permission to do that.

I also need to remember what I held so close in the past…

It is the LORD who goes before you.

I also HAVE to remember that all of Caleb’s days are written.  The things I don’t know…God does.  The things that surprise me…do NOT surprise God. And among infinite things He is The Healer. And hopefully….hopefully…it turns out to just be my sanity he needs to heal 😉

love you!


Diagnosis: Crazy

From just two weeks old…we have gone from “colic” and giving gas drops to “genetic metabolic disorder” and giving CPR.  And, it has been a long 5 months in between all of that.

Honestly, I will admit that it got to the point that I was so adamant on an explanation…a diagnosis…that I lost sight of what was really important…Caleb doing well….feeling well.  I wanted to know, understand and fix it….as. soon. as. possible.

I honestly pursued that with such a vengeance and obsession that I couldn’t tell which way was “up” anymore (although, hopefully you understand that if your kid has or had stopped breathing on more than a handful of occasions…you, too, would pursue it relentlessly…so don’t diagnose me as crazy…yet  ;))

Anyway…Caleb was scheduled to undergo anestesia and 3 biopsies tomorrow and for the past week I’ve had a bad feeling about it that I just couldn’t shake.

In short, I got to thinking….How did this all begin, anyway?

It started out with lactose intolerance misdiagnosed as severe acid reflux and Prevacid treatment which he responded negatively to which resulted in another hospitalization and diagnosis of Sandifer’s Syndrome and in those hospitalizations learned that he has elevated liver enzymes and is neutropenic (very low white blood cells that fight off infection).

Then, in an effort to rule out liver disease-they ran a test for Organic Acids-which showed whacked levels of certain acids that lead down the path of genetic metabolic disorder…

Which lead the GI doc to order more blood and a bunch of biopsies to rule out any other possible reasons…

and by this time I felt like I was spinning around in circles going to one doctor’s appointment or a lab or getting results or catching urine or Googling something or talking to someone or trying something else….

But in these past 4 weeks…when you LOOK at Caleb…he seems fine.  Like a normal, healthy, happy baby.

So I went back to where it all began and realized if we simply would have have received the correct diagnosis of lactose intolerance from the very beginning and treated it then…we. would. never. know. anything. else. because Caleb….CALEB hasn’t shown us anything else.  One doc said “If you put anyone under the microscope Caleb has been under…you’d find that half of us probably have a mild metabolic disorder” or at least-we’d all find something wrong.  And that’s all we’re running around chasing at this point…labs…not symptoms…

As of now…Caleb is healthy, happy and what we are doing works for him…so, call us crazy but until that changes we have decided to put a stop to all of the digging.  My own “digging” included.  As much as I want to know for certain what everything means…I don’t need to know if it is at Caleb’s expense…and unless HE shows us more or a direction to pursue….I do not think any more blood draws, labs, biopsies, anesthesia, etc. are in his best interest.

It is my prayer now that Caleb never reveals more…that unless we draw his blood or collect his urine-we’d never ever know there was anything wrong…and that the things we are doing continue to help him and he gets better and better with every single day and  we don’t have another set-back and (hard to believe I am going to say this) that I never know what is is/was.

Although if this metabolic madness is what causes him to need to eat all the time….pray that it tames itself in the middle of the night…sheesh {yaaaaawn} 🙂

Thank you for your prayers, kindness, love, support and encouragement.   I pray this is the last “Caleb Update” unless I am just telling you he is walking….oh crap…I guess he cuts teeth next….ugh. 🙂 j.k.  Let the (real) fun begin!

xo

 


More Than I Can Handle

I know if you have Googled “methylmalonic acidemia” you probably saw the same things I did and FREAKED!  Or thought…clearly this is not what Caleb has…he is great (and I’m sure you also thought he is ammmmmazing and beautiful and strong and handsome and clever, witty, charming…oh wait….that’s me….hahahahahah juuuuuuust kidding) anyway…you Google it and you see things like: Failure to Thrive, feeding tube, death, brain damage, coma, “most don’t survive their first attack”, etc. Truuuuuuust me…I have read them all…every. single. one. of. them.  Notice I am not on Facebook so much anymore 🙂 I am busy Googling (<—dumb and causes unnecessary worry BTW)

Caleb has MMA. He has acidosis, ketosis, abnormal liver function tests and neutropenia…all needed for the diagnosis.  So I was like YES! Finish line.  We know…we can help him and move forward…halle-luuuuuuuuuuuuu-yu! This explains everything!!!!!

Screeeeeeeeeeeeeeech.

Since his ammonia level was within a safe range when they checked it, it throws a little wrench in things.

{Of course we will know more when we get these next levels back next week…and knowing you all and how you pray…they will be gone 🙂 leaving everyone even more confused :)}

With the ammonia level being within a safe range…The GI specialist cannot say with 100% certainty that the acidosis caused the Acute Life Threatening Episode (ALTE).  Sure, it explains everything else but he says we may be dealing with two separate issues…

The good news is that if there is something else causing the ALTE then his acidosis is clearly a very mild form and can be managed with little (maybe no) interventions once his neutropenia, liver, etc. have reached homeostasis (I seriously never thought I would use that word again after BIO 101) so I was really excited to use it just now 🙂

The bad news is…if the acidosis can’t explain the ALTE we still have to figure out what is and who knows what it will be.

The GI wants to perform a couple biopsies and tests…although I am so eager to figure all of this out…I would be lying if I said I don’t well up in tears at the thought of him “going under”.  The doctor believes these things are necessary but in the interest of Caleb and his mamma’s sanity…he is scheduling the respective departments so all can be done at the same time and only needs to be put under once. Oct. 3oth.

This is the interesting thing in all of this…

I find myself hoping the levels are higher so we have the full explanation and can be done and move forward…until I realize that if they are higher then he has a more severe form of the acidosis and that would be devastating…it’s a weird place to be but I just needed to say it out loud.

I talked to my sister this week and she said something along the lines of “you’re strong or I couldn’t handle this” and then we started talking about some of the issues she was enduring right now and I thought the same thing about her.

And then it got me thinking…Anytime anyone goes through anything hard you hear at least one person say “God doesn’t give you more than you can handle” and it is simply not true.  God doesn’t say that.  My friend lost her daughter this month.  Killed by a car riding her bike home from school.  Another friend was told she needed to say good-bye to her newborn as he was medivac to a nearby city and didn’t expect to make it there…another friend who has one child with a feeding tube and another with Arthogryposis and 7 other babies that need her…another who cares for her Alzheimer’s suffering mother and her grandson…another who delivered a still born…another whose son is allergic to EVERYthing…another who has no job prospect in sight and 9 mouths to feed…another whose husband was dead when she awoke…another who just kicked cancer’s ass…and another and another and another…and the more we tell people that God doesn’t give us more than we can  handle…the more we are telling those people to rely on themselves and their own strength.

God does not want us to do that.  It is with all certainty that we will be given more than we can handle.  The Bible never says “if”…it says “when”….

RELY ON ME.

TRUST IN ME.

SEEK ME.

REST IN ME.

FOLLOW ME.

I AM ENOUGH.

I HAVE HANDLED IT.

I HAVE FINISHED IT.

I AM.

And it still doesn’t say it’s gonna be easy and it’s not going to hurt.

Maybe people say that because we’ve all heard it and taken it as truth…maybe becuase God says he won’t allow us to be tempted beyond what we can handle….but nowhere does it say we won’t be given more than we can handle. I just know how it makes me feel when someone tells me God won’t give me more than I can handle….I feel like a failure…I feel hopeless…and I almost always think about my mother who lost her husband with two small babies in her arms…and I sorta want to hit that person 🙂 because cleeeeeeeeearly God gives us more than we can handle and even in my recent trials…although not a fraction of what others have endured…it has already proven to be more that I can handle and I thank God for His strength, peace, comfort, guidance and saving grace that is enough.

And even when I don’t glorify God in my suffering….there will always. be. grace.

That is all. Stepping off my soapbox now. Carry on.

Romans 5:3-5

 Not only so, but we[c] also glory in our sufferings, because we know that suffering produces perseverance;perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.


Usually

Usually our night goes like this:

After dinner…we divide and conquer.

I take Caleb up for a bath and Mike bathes Jackson and Ally.

I would lay down with Caleb and nurse him and have to lay there with him and continue to nurse him all.night.long.  seriously.

The doc asked me to feed him regular formula only to measure how much he actually eats throughout the night (versus me just allowing him to nurse while I continued to snooze…which has been what has kept me sane) and he literally ate all night long…22 ounces over 12 hours.

Anyway…my point…

Usually.

Usually Mike goes back down with our teeth-brushed, hair combed, bathed, jammie wearin’ kids and watches a movie with them, reads to them, prays with them and tucks them into bed.  I run in and give them a quick hug and kiss.

Tonight was different.

Caleb had his first night of the protein-free formula and I have never ever seen him eat/digest something with such ease. He has been sleeping ever since…

I came downstairs with the rest of the gang at 7:30 pm and immediately had a little girl asking me to hold her and a six year old boy asking if we could “snuggle bug” on the couch…something he stopped doing on his own awhile ago but apparently missed.


One Day at a Time…

I hate to even write anything…it seems to always change. But I know you are praying; some of you worrying so I want to share the latest.

I have to say this has been a very, very long journey with so many details and I will take the time to share all the details….soon.

Today-I just wanted to let you know that his Methylmalonic acid level increased, his Lactic Acid level quadrupled and he went further into a catabolic state.  With all of that, coupled with the other symptoms (namely the Acute Life Threatening Events, liver enzymes and severe neutropenia) the metabolic doctor is pursuing Methylmalonic Acidemia.

We will have more testing done over the next couple of days and then meet with the metabolic doctor.

Caleb has slipped on the growth chart despite consuming more than 30 oz. of food in 12 hour periods.

His final labs are tomorrow and then we can put him on the necessary (protein free) formula and then wait some more…

And Caleb, my love…you just keep livin’ up to your name, sweetheart.  Numbers 14:24.

 

 


Losin’ It.

As if I didn’t have enough going on in the Buck household…we got goats!

It all started off very, very innocent.

Each week we go to the farm to pick up a Harvest Box of seasonal fruits & veggies.  The kids come and we get to see the animals and learn a little about where food comes from. And she lets me pick the wild flowers…

Any…way….

One Tuesday we went and learned the goat had babies…so of course we ohhhhhh’d and awwwww’d at them and pretended to agree with the kids when they innocently dreamed of having them as pets.

Then the farmer pointed to a lady working and said “she is working off some goats”…and then I got the idea that the kids and I could just come work the farm to learn a thing or two in exchange for farm fresh milk and eggs.  Not goats. She agreed.  We were to return to the farm on Friday and the kids would learn about the animals and how to care for them…kinda like our mini-version of 4H.

Friday was fun and great and the kids said they wanted to have that job until they died 🙂 (Remember when you were a kid and couldn’t wait to get a job! HA! silly kids :))

But then on Sunday she called and asked if we would be interested in taking care of the babies…from our house…WHAT?  Mike is gonna kill me!

“well…we do have a playhouse they could live in.” and

“they have to be easier to feed than Caleb.” 🙂 So off to the farm we went to pick up a couple more Bucks…I mean goats…

and now I would like to introduce you to Queen Piper Sweetie…AKA “Sweetie” <—-clearly Ally’s 🙂

and….King Poe “Poe”. <—-Jackson’s.

So in case you have been following the Caleb updates and questioning if I was losing my mind…I just wanted to show you that yes, indeed I am. 

Hopefully we will keep them alive longer than the lizard….