What I thought I knew

Everything that I thought I knew about life, pain, faith, and fear has been ripped from my fragile hands this week.


My son has cancer.  

This is something I never thought I would have to say.  So many times I have pictured the future for my children, and when I did, it wasn't necessarily always sunshine and roses.  I have pictured the possibility of a teenage child needing a double lung transplant.  I have pictured their first heartbreaks and the emotions it will stir up in them.  I have pictured my children in car accidents.  I have pictured them wrestling with their faith, or worse yet, not finding it.  I have pictured them failing at sports, being bullied or teased, trying drugs, losing friendships...  I HAVE PICTURED THEIR FAILURES.

But then, I have pictured them at their high school and college graduations.  I have pictured them getting engaged.  I have pictured picking out an engagement ring with Logan for his bride.  I have pictured watching Genevieve try on wedding dresses and the look she will have on her face when she finds the right one.  I have pictured them pursuing careers.  I have pictured them changing the world.   I have pictured them travelling to new countries.  I have pictured them with spouses, children, and friends too numerous to count...  I HAVE PICTURED THEIR TRIUMPHS.

What I never could have pictured, was cancer.  Not for me.  Not for MY kids.  For some reason, when I picture cancer, it has always been on an adult... certainly not on MY family... and DEFINITELY not on my child who already struggles to live a normal life.  When I picture cancer, I picture someone who had already had some time to live life.  Someone who smoked, maybe...

Cancer.  The "C" word.  There are an awful lot of "c" words running through my brain this week.  Cancer.  Chemotherapy.  Cruel.  Cystic Fibrosis. Immuno-Compromised.  Courage.  Compassion.  Christ.  Can't...

I thought I knew (at least within reason) what to expect from my life.  I was wrong.

I thought I knew what pain meant.  I was wrong.

I thought I new where I stood with my faith.  I thought it had been challenged.  I was wrong. 

I thought I had experienced fear.  I was wrong. 


BUT...


I thought I had learned to love to my full extent.  I was wrong about that too.

I thought I knew what it was to respect my husband.  I was wrong about that too.  He has blown me away this week with his strength and bravery.

I thought I had encountered real grace.  I was wrong about that too.  Until you are in the midst of your deepest storm, you will never understand true, unfailing grace. 

I thought I had felt loved by God's people.  I was wrong about that too.  I cannot even describe the outpouring of love and support that you have given our family this week.  I am consistently in tears, but it's not always because of the pain.  Often it's because I'm SO amazed and touched by you and your actions. 

I am so, so grateful to you.  You who have prayed.  You who have cried.  You who have written words of support.  You who have showered us with love from near and far. 

NOW I KNOW:  We can NEVER know our future.  But what we can know is that God is always good and that love cannot be killed.  Not even by cancer. 

At War

My feelings this morning are very "at war" with themselves.  It's like a 5-way traffic intersection in my brain and I'm sitting in the middle of it with my hazards on, trying to make sense of the confusion.  Let me explain...

This time of year is always hard for me.  I have a VERY intense Love/Hate relationship with the Cystic Fibrosis community during the Great Strides fundraiser season.  In an effort to reach out to other people, educate the public, and appeal to their friends for money (myself being no exception), this time of year the CF community comes alive with activity.  My Facebook feed is flooded with personal blogs detailing the intensity and frustration of living with this disease on a day to day basis, and YouTube videos reflecting the seriousness of the disease progression and the prognosis.  Beautiful children, hardly outgrown of their baby fat, crying in pain, taking pills, doing treatments, all staged in perfect time to some heart-wrenching melody reminiscent of Sarah McLaughlin and the ASPCA commercials.  It's heartbreaking.  It works.  And me, like the true masochist I am, watches EVERY SINGLE ONE OF THEM.  It is not uncommon during the months of Feb-May for me to randomly burst in to tears when I hear an emotional song or scroll through Facebook.  I love these posts.  I hate these posts.  It makes me exhausted to be consistently reminded of how little time I may have with my son.  It makes me celebrate to see people with CF "beating the odds" or receiving life-saving transplants. 

The CF community is a truly tight-knit community.  We build each other up, support each other, encourage each other, give ideas and opinions when someone is in need, send medications when someone runs out, etc.  I have never encountered a group of people that is more supportive of each other than this community is.  EVEN in the church.  So it is often that my desire of scrolling through Facebook is to find encouragement in this area.  When I'm feeling low, and looking to be lifted up, I'll scroll through my news feed looking for such encouragement and instead I am met with these videos and blogs that, for all their good intentions and purposes, just serve to bring me down even more.  This season truly shakes me to my core. This constant reminder of the facts and statistics of CF tests my faith in a very tangible way.  I often find myself crying out to Jesus in the dark of the night.  Praying for "the miracle" that might save my boy.  Praying a hedge of protection around my children and their organs.  Praying that He strengthen me enough that Logan never feels the repercussions of my weakness...  I read a post from a friend the other day whose son asked her: "Mom, have any kids every died from CF?"... my heart broke in two.  It's only a matter of time until I have to address these questions with Logan and it terrifies me.  I'm so glad that she posted this and that her friends reached out to her and (hopefully) lifted her up and blessed her, but for me, that post made me want to puke.  Not because of what she posted, but because that is my life.  That is the life of all of us living with and struggling with chronic diseases.  It's like a slap in the face.  A reality check.  Every. Time. I. Log. On. Facebook. 

Here's the double edged sword though, I can't delete or take a FB hiatus because I use it just like everyone else does during this season to reach out, educate, and raise funds.  The thing that I desire most requires posts and videos like this to come to fruition.  To find a "cure" we need to research.  To have the ability to research medications, we need money.  To get money, we must fund raise.  To fund raise we must appeal.  To appeal we must be accessible and relate-able.  Social networking is the ideal platform to become accessible and relate-able.  There is no government financial support for CF research because it doesn't affect enough people. 

In closing, let me say this.  I am sorry to those of you who roll your eyes at my persistent posts and links asking for your money.  Please don't misunderstand my intentions.  It is one of the most difficult things I do all year.  I hate asking for money.  I hate asking for help.  I am an independent spirit.  I don't want to complicate your life or make you rearrange your  budget so that you can obligatorily contribute to something that doesn't directly affect you.  But, thank you for putting up with it. 

To those that are also struggling with emotional divergence, who are sitting at that intersection and are unsure which path is appropriate, I am there with you.  I love you.  The direction we travel is a choice.  You can choose to let this season affect you positively or you can choose to let it affect you negatively.  Sometimes it's a daily choice.  It is for me anyway.  Just know that whatever direction you choose, it's ok. 
  

   

Here We Go Again

      What is the point in having a blog if you never write?  There isn't one.  I apparently am terrible at keeping up with this thing.  When I punched in the web address of my blog this morning (to see if it still existed), it informed me that it has been 556 days since my last blog entry.  So... "Here We Go Again".
      I will not waste my time "catching you up" on the details of what has been happening in our life for the last 556 days because that would end up being a novella.  However, for those of you who do not follow closely on facebook, I will give a brief update.  Here you go:

-Landon Deployed to Afghanistan during which time I moved my newly pregnant self and Logan back to CO
-Genevieve was born in June of 2012
-Landon returned from his deployment in November of 2012
-Holidays spent in CO
-Moved back to WA Jan 2013
-Landon signed up for LPN school through the Army
-Moved to MD June 2013 for LPN school

Hey-O!  You're caught up.  At least on the necessary stuff.

Alright.  So, here we are, present day.  Landon is doing great in the school and will graduate in July.  We don't yet know where we will be stationed after he graduates.  They could keep us here or move us anywhere.  One of the famous sayings from Army life is "Hurry up and wait".  Definitely the case here as we probably won't know where we are going to be stationed until late June and then will have to plan and articulate a move within a month.

I am currently not working.  Staying home and taking care of the nuggets often feels like a full-time job though.  I am just trying to keep our lives in one piece while we Landon is in school.  Once the kids get into public school, I'm sure I'll go back to work again, but for this season, I get to "just" be wife/mom. 

Logan is doing pretty well.  He's had a rough time in MD as he misses his friends from WA and CO.  He's old enough now that moving affects him socially and that's hard for a mother's heart.  Health wise, he's alright.  We've had to fight some reflux and vomiting issues and a couple of unfortunate bacterial infections in his lungs but overall he is healthy.  He never ceases to amaze me with his drive and determination and his willingness to comply for treatments and medications.  He truly is a warrior for his own health.  Winning!

Genevieve is a spit fire of a little lady.  She is precocious, fierce, opinionated, and has mastered the fine art of whining.  But the cute kind of whining where she can "talk" you in to something that you've already said NO to three times.  Ugh... She definitely tests my parenting skills.  And yet, what a blessing she is.  She's a mamma's girl, compassionate, gentile, maternal, and all around girly girl.  I LOVE it. 

Today, I have no important information or any stunning words of wisdom to impart on you.  However, after 556 days of silence, I figured that it was time to stir up the old keyboard and let you know that we're not dead.  Stay tuned for future updates.

Please, stay healthy, stay happy, and feed your prayer life.  Blessings to anyone who reads this!

-S

Broken but Blessed

I know it's been a while since I've posted.  There has been a lot going on over here and a lot of it has been bad.  So, we'll start with the good news...

Logan's most recent clinic visit went VERY well.  I am super stoked.  We're still tracing along in the 50th percentile for weight.  God bless that G-tube and Pediasure.  The docs are pleased enough with his weight that we are going to back off on his night feeds and Bolus feeds to see if he can maintain a decent weight on primarily oral foods.  I... am... so... excited... I can't believe my little boy has accomplished so much!  His lungs also sound very good.  Still awaiting the results on his sputum culture, but I have high hopes for that as well.  The only sad news from his clinic visit is that my FAVORITE doctor of his, one of his pulmonologists, is deploying for 6 months.  Oh well, such is the Army lifestyle.  Thankfully he will be back after the deoplyment and is not being restationed elsewhere. 

Landon, is also being transferred out of his hospital job and back into an infantry unit.  What this means for us is that he is likely going to be deploying himself, come December.  It would be a year in Afghanistan this time.  I am REALLY not looking forward to that, so I am strongly considering going back to Colorado to live with my parents while he is gone.  That would mean going to either Denver Children's or Jewish National for our CF care for the year.  I have heard great things about both of them so i'm not too concerned, but it would be a good deal of paperwork and possibly a waiting period of being able to start his care in a new region of our insurance.  But... I think this will probably be worth it for my emotional well being. 

Lastly, I know that some of you already know this but I have not made it widely public yet.  Please... I really don't do well with pity, so please don't feel it necessary to shower me with apologies.  I'm strictly making this public so that I don't have to answer questions one by one as you all start to figure it out.  Landon and I lost our pregnancy.  I would have been about 11-12 weeks along by now and after a couple of repeat ultrasounds and blood panels, the doctors discovered that the fetus stopped growing at about 6 weeks gestation.  My body did not seem to recognize the miscarriage and we were still holding out hope for a bit, but it has now been over a month so the doctors strongly recommended some medical intervention.  Thus, this morning, begrudgingly, I had a D and C surgery to remove the dead fetus.  Our hearts are broken and we are still trying to process all of this, but I trust that God had a purpose.  Someday, I will understand what that purpose was.  There is no point in trying to rationalize it.  There is nothing we could have done to change it or prevent it.  It just was...

We appreciate all the prayers and support from those of you that have known and would appreciate further thoughts and prayers to help our family heal.  <3

Another little blessing :)

Well, the cat's out of the bag!  I am pregnant again.  We are excited and also very nervous.  As prepared as I felt for another child, now that the reality of it is staring me in the face, I don't feel as prepared as I thought I was.  But we ARE excited.  Another little bundle of joy!  The only thing I REALLY worry about as a mom of 2 is how to love the next one as much as I love Logan.  Is it truly possible? 
Anyway, it's very early.  We found out on Friday (I went in to the ER while Landon was working and one of the PA's ordered a blood test for me) and because of the long holiday weekend, I won't be able to contact the doctors until Tuesday to set up the initial appointment.  I'm probably about 4-5 weeks along, so like I said, it's still very early.
From what I've heard from other CF families, I imagine that at about 14 weeks along, they will strongly suggest that we have an amniocentesis done to determine if the baby has CF.  We originally were very against this, as it would not change anything about the pregnancy for us.  This child is mine, CF or no.  However, the more I think about it, and the more people I talk to, the less scary it sounds.  I don't care to know if the baby has CF.  But, if the Doctors know, at least they can monitor more closely for intestinal blockages or other complications in-utero. 
So, off we go on the parenting adventure again.  We are trusting God with His choices for us and we are excited to welcome another little one into our lives.  Thanks to all of you for your support and love.

PS - on a side note, we go to the GI doc again on wednesday to address all the projectile vomiting that we have been dealing with from Logan.  It seems to be a complication of his feeds and i'm hoping we can figure it out.  :/

A New Adventure

Well, we did it.  We made it past the first year with sanity intact.  Some moments have been excruciating, most have been a joy!  It has been quite some time since I posted, so here's an update on what's been going on the last couple of months:

Feb/March -  In late Feb we got the approval from insurance to have a home nurse to monitor Logan's tube feeds at night.  We did some interviews, hired an nurse, and Karlene has now been with us since then and is a huge blessing to our family.
   My family came out for a visit during my sister's spring break in late March.  It was SO fun to see my parents and 2 of my 3 sisters bonding with Logan and just to take some time off of work and play around the Puget Sound area and visit with some other extended family.  I absolutely adore my family, so it was also a nice treat for ME <3

April - Lots of fun stuff happened in April.  We got Logan's first birthday photos taken and of course threw a birthday party!  It was so fun for Logan to play with his family and friends and open gifts, and even the weather held out that day!  We were so honored and surprised to see how many people he has already affected in his (so-far) brief time on earth.  We also got to go to my cousin's 3rd birthday party in Olympia and enjoyed that as well.   Logan had a couple of hospital visits in April.  One was just a 12 month well-baby visit which included SEVERAL vaccines.  The other was a clinic visit with some pretty major changes.  I will go into more detail about this visit at the end of the blog.

May - So far May has also been a blast!  The first week of May, I was blessed to be invited to a silent/live auction to benefit the CF Foundation.  It was so fun for me to be able to get all dressed up in my formal dress and taking my great Aunt on a date.  It was a great dinner, a great night, and over $60K was raised for CF that night.  It was awesome.  I have also had the priveledge of going to 2 Great Strides walks this month.  Both were awesome and I got to connect with some good local families who also have kids with CF.  It's always nice to meet another parent face to face and just metaphorically lean on each other, with the understanding that we both "get" what the other is going through.   It has been a fun month for making connections :)

So now, here we are.  Logan is 1, Landon and I still have our heads above water, and we are ready to move on to a new adventure.  I am excited to see what this year has in store for us.   Already Logan is starting to show some major changes in his language and motor function.  No longer is he just walking, but he is climbing EVERYTHING.  I can't believe how agile he is!  It is fun AND terrifying, to watch him climb the stairs, or climb the picnic table and then, as boys will, tumble down said object.  (Always under close observation mind you).  He has also started signing some words like "more", "all done", and although he isn't signing the word for "bubbles" he knows exactly what they are.  When he wants to play with bubbles he comes up to me, looks me square in the face, and starts repetively blowing (as if he were blowing bubbles).  It's hilarious.  And adorable.  We are currently also working on the sign for "please", however, he thinks that "more" will work for anything so we see a lot of "more".  :)

Ok, so as promised, a CF update.  I am excited to share that we got another negative throat culture!   I was honestly worried that the last one was not a very good sample and therefore may have been wrong about being negative.  This one, I got to witness and it was a really good sample and I was thrilled to hear that it came back negative.  They also took a chest x-ray that looked clear as can be!  Also good news.  They had to poke him 6 times to get a vein in order to do labs.  I haven't heard everything yet about the results of the labs, but I did get his Chem/CBC results back and most of it is normal.  There are a couple of elevated liver values which worries me.  Usually those results indicate that some of the tubes in the liver are starting to get clogged, so although I haven't talked to the pulmonologist yet, I have a feeling we are going to be starting Pulmozyme very soon.  It just blows my mind the stuff my little one goes through.  He is so much stronger than me. 
The biggest change was nutritional stuff.  He plateaued in weight this month so we decided as a team that it was time to up the calories of the night feeds.  So he was getting about 216 calories a night of formula, now we are in the process of changing to 384 calories a night of Pediasure.  So we are almost doubling his nightly calories.  Plus, with more bolus feeds, and switching out Pediasure for formula, we are looking at giving him almost 1800 calories a day of just Pediasure.  Then whatever calories he gets out of the solids he eats.  It is insane to me that I could subsist off the amount of calories HE is getting in a day...

Well, that is it!  I will try to be more frequent in my postings.  I appreciate the support and love that you all give to our family.  We are constantly honored and blessed by all of you.  Until next time!



Just thankful...

This past week I am struck over and over by how amazing my son and my husband are:

     It is the most INCREDIBLE feeling in the world when I come home from my morning shift at work and as soon as I open the door, Logan's eyes light up and he giggles joyously as his little legs come a runnin' as fast as they will carry him in my direction. Arms outstreched, excited smile, oh man... it's beyond words... I have teared up and laughed twice this week at these particular encounters.  I have never felt like my life "sucked", but being a mom has enriched my life to a level I did not know existed.  He is my greatest adventure and my biggest blessing.

    God truly blessed me when he led me to my husband, Landon.  He is a man I look up to, admire, love deeply and respect.  He makes me laugh, (sometimes makes me cry but always apologizes) and loves me enormously.  I have always known how amazing he is, that's why I married him ;)  He lifts me up when I am down, and encourages me when I get back up.  We are a team.  Always.   And I am more thankful for him than I could ever explain.  He is my rock.

    There really is no reason for this post today.  I just wanted to share how incredibly blessed I am.  It's ok... you can be jealous ;)

CF update:
Our visit went well this morning.  Doc says his lungs still sound flawless.  We will be doing a chest x-ray next month at clinic just to make sure but he is not worried.  They took another throat culture so we should have results back on that by end of next week.  We are saying prayers that the Pseudo is gone.  He's still tracking on up the weight scale.  Still very low (5-10%) but hey, i'll take it. 

Another chip in the stone...

When it rains, it pours... Logan's culture came back positive for Pseudomonas...

Goodbye ignorance;

 Hello TOBI, Cipro, extra treatments, more worry, more hand sanitizer, bigger precautions,

more dishes, bigger temper tantrums, and frequent panic attacks...

Ok maybe not panic attacks but still...

ugh..........

Pound for Pound

      Well, we just returned from Logan's first check up since his G tube surgery.  Unfortunately, there wasn't much in the way of weight gain.  He's only about 1/2 lb up in 3 weeks which is a bit of a disappointment.  So, we are going to be a little bit more aggressive with the tube feed at night, and add in some small bolus (sp?) feeds during the day.  After talking with Logan's GI doc today, Landon and I both feel l ike we have a bit more liberty when it comes to the decisions to tweak the Gtube feeds and that makes both of us feel better.


      On another note, (God Bless the Military insurance!!!) last night was our first night with a LPN  in our home to monitor the feed overnight.  She will be with us 5 days a week monitoring Logan's feeds and that is a HUGE blessing.  Of course, it will take some getting used to and some trust building for us to be completely comfortable with a stranger in our house caring for our child while we sleep, but we are excited for the prospect.  Because it was so new, however, we were both kind of on "high alert" last night and didn't get much sleep.  But that's ok.  A couple of cups of coffee and we're sure to recover. 

Yes, even in the Pacific Northwest it snows...  We built an igloo in our front yard yesterday :)

A full on frustration

Alright...  I am trying to be as optimistic as possible about this G Tube.  I have been told by MANY cf parents that it was the best thing they could have done for their child, and I believe them.  But this is not at all what we expected.  The surgery went as well as it could have.  He took it pretty rough though and even though the GI doc said most kids don't even need pain control post-op, we were giving him Tylenol every 6 hours for almost a week.  He is doing a GREAT job tolerating the feeds but here is where the frustration arises.
    Back when our CF team started talking about doing a G tube, we asked them if, in an effort to avoid the surgery, we should start waking him up once a night to do an extra feed.  The kid sleeps all night so this would have broken up his sleep, but would have given him an extra meal.  They said, verbatim, "no,  the calories that you would be giving him in one meal would not be able to equal up to what the G tube can give him".  So, when it came time for the surgery, we agreed that it would be for the best. 
   Ok, fastforward to the hospital.  Post-op.  The nutritionist comes in to discuss what we will be doing with the feeds.  She says we're going to start him on 27 cal/oz formula (which is normal for him) and we're going to do 6 oz over a 6 hour period.  WHAT THE F***?????  That's LESS that one of his normal bottles!!  By about 4 ounces!  We... Were... Pissed...   My husband said he would have woken Logan up EVERY night and fed him a 10 oz bottle and avoided a surgery.  We both felt pretty cheated.  Plus, on top of that, as most of you that use Gtubes know, the enzymes lose their effacacy after about an hour.  So we give him a dose at the beginning of the feed and a dose at the end.  But if they are only effective for about an hour, that's 4 HOURS of food that he's not getting nutrition out of!   In short, he would have gotten MORE calories out of us waking up once a night and feeding him a bottle than he is going to be getting out of these feeds. 
  When we (civily) brought this up to the team, they said 1) this is just a starting point (which I get, but come on... I was imagining we were going to do like 30 oz a night) and 2) Waking him up in the middle of the night is not good developmentally at this age (which I also get, but don't some 9 month olds STILL wake up on their own once a night to eat?
   We are trying to contain our frustration and have faith in our team, but this is really pushing it.  This is the first time I have disagreed with their plan of care.  Are we being unreasonable? 
   The only upside I am seeing at this point is that it looks like he's qualifying for 8 hours a day, 7 days a week of Respit care and we only have to pay $25 a month for it.  So we will be having a nurse come in overnight to handle the feeds and we can get some much needed rest.  Right now one of us has to wake up twice a night to change things or turn them off. 
Please tell me that i'm being unreasonable... I need some support here...

A long time coming

          I feel like so far, I only blog when there is something CF related going on.  I HOPE that in the future, that changes but for now, another Logan update. 
          We had clinic yesterday and the results were not good.  Well, I shouldn't say it was ALL bad.  His lungs sound clear and there were no concerns pulm-wise.  He's been on oral antibiotics for about a week now because of a cough that stuck, but that is now improving and it does not sound like there is any fluid in his lungs (praise the Lord).  I think the CF team all knew what was coming for Logan, and I think they all knew how I would react because they really didn't talk to us much about Pulm stuff yesterday.  The Pulmonologist came in and listened to him and asked if his cough was getting better and then he peaced out.  Not the norm for him.  GI docs, Nutritionist, and Case Worker came next.  Pretty much as soon as they sat down I knew what they were going to say.  We all were aware that Logan has been headed in the direction of some sort of supplemental nutrition.  After hearing for so long that this was a high probability, I don't know why I wasn't mentally prepared for it, but I sure wasn't.  I broke down.  I don't want my baby under anesthesia twice!  I don't want him to have tubes hooked up to him all night while he's sleeping just to supplement his calories!  I don't want my child to grow up hating food and me for forcing it on him!  There are SO many things that are good about the G tube and the direction we are headed... but I am terrified!  What did Logan do to deserve this???   I am an excellent worrier and I am doing a great job of overanalyzing all of this and causing myself to be sick with worry.   But worry as I may, it's happening anyway.
          So, next week he will go in for a set of Barium Radiographs to make sure all of his organs and colon, etc. are in the correct position and that nothing is enlarged.  Then sometime the first couple of days of February he will be in the hospital for about 4 days for the first of 2 anesthesias.  The procedure should only take about 30 minutes (under actual anesthesia) and then 8 weeks of healing.  After the incision is healed, about 8 weeks post Sx, they anesthesize him again and pull the original tube out and measure the size of the incision.  Then they are able to order a smaller, less obstructive, port that fits Logan's tummy exactly and my guess is we will probably use it for 1-2 years.   Unfortunately, that puts the second surgery right around his first birthday.  :*(   What a bulls*&! birthday present!!!!!!!!
          Well, that's all I got.  I was going to apologize for unloading, but you are viewing this blog voluntarily, so it's kind of your own fault that you read it ;)

BLESSINGS ON YOU ALL!!!

Another year begins

I apologize for the time it's been since my last post.  As a novice blogger, I don't always feel like there is much to say.  So unless something of consequence happens, I'm not always led to write.  I do feel like it is time for an update, however. 

Christmas was loads of fun.  My husband's family was visiting from CO and I loved having family around.  Logan really enjoyed ripping the paper off all the gifts.  I think he enjoyed the paper more than his presents.  But none the less, the joy of a little boy in the midst of discovery was so fun to watch!  I unfortunately, was rather ill on Christmas day, but I sucked it up long enough to open presents.  The rest of the day was spent in and out of conciousness on the couch. 

A couple of days after Christmas I took him in to be weighed (as instructed by our nutritionist).  He finally hit the 15 lbs mark!  Hallelujah!  He still isn't registering on the weight scale for his age, but at least it looks like he's starting to catch up.  We will hear the rest of the CF team's thoughts at clinic this month which i believe is the 11th. 
Also during the holidays, there was a cold that went through our house.  The cough has stuck around for Logan so i'm calling tomorrow to see if they will see us before clinic.  I am concerned about this one.  It sounds really wet, it's not very productive, and he's had it for almost 2 weeks.  Better safe than sorry. 
Aside from that, not much has happened.  I got some great new dance clothes and some awesome (much needed and desired) new kitchen utensils for Christmas and my other present I am getting on Friday and I will post pictures when I get it!  Just know that i am super excited about it. 

Reflecting back on 2010 I have mixed feelings.  I was the most incredible and the most painful year of my entire life.  I have never felt more fufilled that I do as a mother.  I have never had more love in my heart than I do now for my husband and my son.  And yet the entire year (post Logan's birth) all seems shadowed by a hovering dark cloud called Cystic Fibrosis.  Since the first moment we found out about CF, that cloud has been hovering over my head.   I'm just waiting for it to start dumping on me.  I just wish I had an umbrella...  But what I do have is the love of an incredible man, the adoration of my perfect child, and the continuous support of a loving savior that carries me when I am weak.  I am constantly moved by the love and support of the other people I have encountered that are affected by this disease.  There are mothers (and fathers) that have had to be much stronger than I, and if you are one of those parents and you are reading this, I am so sorry that your child suffers.  GOD BLESS YOU CONNER J!!!  YOU'RE WITH US STILL!!!  If you are a Cyster or a Fibro, you are my heroes.  I am so sorry that there is not more that can be done to lessen your suffering but if is because of you that I still have my head above water.  You are all inspirations to me and without you I would not have the hope for Logan, and his future, that I do.

Alright... well i'm crying now and that's not how I wanted to end this.  Sometimes I feel so strong and sometimes I feel so incredibly weak.  But that is not what I wanted this post to be about.  So...  I hope that you all had a Merry Merry Christmas and that Christ was the center of it.  I also hope that your new year brings you love, prosperity, and peace that passes all understanding.  I am looking forward to my continued journey as a parent and a wife and I hope that I am prepared to face whatever 2011 has in store for me.  

A reflection of 2010

I SLACKED IN JANUARY!

FEBRUARY

MARCH

APRIL



MAY





JUNE

JULY

AUGUST

SEPTEMBER





OCTOBER

NOVEMBER

DECEMBER





The end of the beginning, and finally an answer

Well, let me first elaborate on the second half of today's title.  An update on the lactose intolerance.  After 2 days of no lactose and no vomiting, we started re-introducing lactose into Logan's diet.  The first day was ok.  But the second day of lactose formula, low and behold, he puked! So we decided it was worth a try to remove lactose as much as possible.  So, for the last week or so now, we have been using a lactose-free formula, and staying away from solids with lactose.  (This is a bummer because he likes yogurt a lot)  He's been doing quite well.  I really feel like we have isolated the issue and although it is another thing to add onto our plates and onto his health record, having an answer is worth it.  And hopefully, without the puking, his weight will also respond in a positive way.   Thank you to everyone who listened to me gripe about the puking and who prayed for answers. 

As to "the end of the beginning", we have reached a milestone!  Logan is figuring out how to crawl. He went from getting up on all fours by himself last sunday, to inching forward with crawling on tuesday!  It is amazing to me how quickly they figure it out!  Granted, most of his attempts still end in face plants, however, I expect him to be fairly mobile by the end of the year.  I guess that whole "baby proofing" thing we've been procrastinating should probably happen now.  Especially considering I had to pull a piece of a dog toy out of Logan's mouth the other day.  Ewww!  ;) 

Got milk?

Ok... so, we finally have a game plan for the vomiting.  Last week, for 4 days straight, Logan vomited almost every meal.  This has been a huge stressor for us since he's already having so much trouble gaining weight.  After a couple days of lots of vomiting, Landon and I had the realization that Landon was lactose intolerant as a baby.  After talking to his mother, we learned that so were two of his siblings.  Well, we've been using a milk based formula.  So we went out and bought a soy formula, and decided to give that a try for a couple of days.  Yesterday and Saturday, we did strictly soy and...drum roll please... NO VOMITING.  So, after two days vomit free, we decided to add back in the milk based formula and see what happens.  So far, so good.  But, I really have my hunches that Lactose Intolerance may have been the culprit all along.  We shall see... update to come. 

I hate the aspirator.

I am developing a serious love/hate relationship with the nasal aspirator.  Thank goodness we have a couple because I don't know how we would have gotten through the cold season if we didn't, but having to use it every 15 minutes on my poor baby, especially in the middle of the night, is getting to be exhausting.  Logan is sick (hopefully on the downslope) with his second cold in as many months.  There are things to be grateful for of course:
1.  It's NOT a chest cold!  The poor kid is congested beyond belief and I had no idea that a child that small could snore that loud, but there's not much of a cough.  It seems to be focused in his sinuses and I would rather be sucking snot out of his nose than giving him antibiotics for a cough. 
2.  I'm NOT sick!  Also a good thing since Landon has the same cold and the boys are pretty much decomissioned.
3.  He's building his immune system!  Good of course.  Just wanted him to wait a bit longer :)

That's about all I can think of right now.  I'm really bummed that he keeps getting sick.  Not only is it horrifying to me but it makes me feel inadequate.  Even more than usual.  I just wish I could do more!  I wish I could use a humidifier!  I wish they had decongestants for infants!  I know kids get colds, but I just had this delusion of granduer that I would be able to keep him from getting sick at least until he was a year old.  Plus I'm not a huge fan of being covered in snot.  But, there are worse things!

Needless to say, the nasal aspirator will be bleached and steam sterilized after this cold has passed.

cuddling with my puppy always makes me feel better

Just an update

Well, It's been a while so I thought I've give a little update.  Things have been going fairly well around the house.  It's starting to get busy since the holidays are coming!  Christmas shopping, planning trips, working, writing Christmas letters... you know the drill.  Christmas is my favorite time of year aside from the weather.  I need to move to the southern hemisphere so that Christmas is smack dab in the middle of summer.  Then all would be well with the world! 

Well, we had CF clinic on the 9th and it went... ok... no one is pleased with Logan's weight.  They are starting to consider alternative therapies.  The GI docs and Nutritionist said that if his weight is not significantly increased next month, then we will start with an NG tube (nasal gastric tube) for a couple of weeks so we can pump in extra calories.  If that is not sufficient, then we will progress to a G Tube.  I don't know that this was my "worst fear" but I was certainly hoping to avoid it.  I have heard many people say that it was the best decision they ever made (getting a G tube) but I think i'm afraid that it will make the disease more real.  I don't want to feel like CF is "beating" me.  Up till now, it's all be preventative care so I've been able to remain positive.  I am afraid that when it becomes less preventative, and more necessary, I will feel as though I have failed.  I know that's stupid but I must not be the only one out there that does/has felt like that.  I'm still fairly new to CF so maybe I'm still in the denial stage... I don't know...

Anyway, enough pity party.  I'm getting excited for baby's first Christmas!  It's coming up fast!  We are lucky enough to have family that is coming to visit us over the holidays so that should be nice as well.  We also made some time to get Christmas photos done and they turned out super cute!

Well, everyone here is currently healthy so that is also a huge blessing!  Hoping to keep it that way!  I will try to get in another one or two posts before Christmas comes along.  So, for now, I will not type out my Holiday greetings to everyone.  Hope you all are well and do not feel stressed in the upcoming flurry of the season!  God Bless.

6 month visit

Nothing real exciting to report today.  We went in for Logan's 6 month well-baby check up.  He weighed 6 kgs exactly (which is about 13 lbs 3 oz).  Still 0% on the weight scale.  I guess his head is in the 88th% though?!?  Sounds like my kiddo has a fat head ;) 

Anyway, it wasn't a CF visit so no changes today.  He got a few shots, including the first flu vaccine :(  Poor booger.  It always breaks my heart when he gets his shots.  

Well, we skipped the pumpkin carving this year.  I know, i know.  Shame on me.  But in my defense, neither Landon nor I had a real big desire to do our own pumpkins this year and it's not like Logan is old enough to remember!  So we'll do it next year.  We ARE dressing him up though in an adorable tiger costume.  Courtesy of his GM.

A good friend of mine is moving on Nov 2nd so we're having a going away dinner for her on Halloween night.  So, we won't really get to do much trick-or-treating/passing out candy either.  But again, it's not like he's going to miss out on that memory.  I'm a little sad, but it's ok.  I'm missing my family this holiday season.  I love that Landon is home for all of Logan's "firsts" (ie Halloween, Christmas, hopefully his birthday) but i'm missing the parents/siblings.  On both sides.

That's all for today.  Love and health to all! 

When it rains, it pours

Well, it's been a long week.  Logan (and myself) are still fighting our colds.  I'm almost over it, but he still has a pretty runny nose and a lovely cough.  Landon had to fly home to Colorado on Monday for a family emergency so It's just been me and Logan.  Everything is fine now (Landon's on his way home), and Logan and I can manage by ourselves but he decided to hit me with a new illness last night.  So for the first time in my mommy experience, Logan REALLY vomited last night.  Not spit up.  I've done spit up and many times.  Even forceful spit up.  This was SOOOOOOOOOOO different.  Trying to give him his enzymes for his night cap meal and he gagged on them... which triggered the entire day's meals (those that hadn't digested) plus about a quart of stomach acid to shoot across my kitchen a good 5 feet.  Then it happened a second time.  By now, we're both covered in puke, the kitchen floor is covered, I'm holding a dripping child, puke is coming out his nose, the dogs are starting to lapp it up and I'm screaming at them to stop, so then the bird starts screaming.  Oh man... where is the hubster when I need him. 
After making a few phone calls, I decided that since this was the first incident and he really wasn't that upset about it after it was all over, that a trip to the ER was not necessary.  I would rather not expose him to further illness and have tons of unnecessary tests performed on him just so they can tell me he has a stomach bug.  And he's still moving stools so It's not a blockage.  Anyway, he slept with me last night and did just fine.  He had a dry diaper this morning and ate fairly well for his morning meal.  Did a lot of burping which was great.  Then, an hour and a half later, I'm changing his diaper and guess what??  Here comes his morning meal.  All over us again.  Poor booger...  Well, needless to say I called his Dr freaking out.  He told me to stay home and put little man on a strict diet of Pedialyte for the rest of the day.   So far he's been keeping it down but he's also been sleeping a lot so I can't really say for sure.  At least I was lucky enough to have the day off today.   Hope it passes quickly.  Puke grosses me out...

My sickie pie taking a nap...

Loooooooooooooong Night...

Stress, stress, stress...  We are in the middle of experiencing our first cold with Logan.  It hit him rather suddenly Thursday night and has gotten progressively worse very quickly.  Not to alarm anyone, it does not sound like it's reached his lungs.  It's just a head cold and I knew this day would come eventually, but none the less, I feel like I am a chicken running around with my head cut off wondering WHAT I CAN DO for my child.  We're adding in extra treatments and have decided to revert back to the saline nebs (for the extra ones) rather than giving him more albuterol.  I will tell you, I was very disappointed when I got to Walgreens last night and discovered that Dimetapp is only for ages 4+.  The pharmacist looked at me like I was an idiot when I said I had a 6 month old with a cold what could I do?  She said humidifier and Tylenol.  So, I went home with a humidifier.  We spent the whole night inhaling Vicks, which unfortunately gave Landon a big headache.  Not that we got much sleep anyway, so I suppose the headache could have stemmed from that as well.  Ugh... I don't want to offend anyone or sound like an overly-proud parent, but this really is the FIRST time Logan has kept both of us up all night.  Even as a newborn he would sleep at least 3 hours at a time at night.  By the time he was a month old he was sleeping through the night.  He doesn't cry much, he's very laid back; so to those of you who had difficult infants, I'M SO SORRY!!! 
Well, I guess I'm up for the day now.  Have to babysit the neighbor's kids today so I better buck it up.  Onto the 2nd cup of coffee.  And it's my turn for cpt. 

Flu shot, Good news, & a Funny story

Ok to those of you who voted, I went out and got myself a flu shot.  Just thought you should know since I was so undecided, that "your vote counts" and I really did go out and do it.  And I paid for it with a nice big red painful lump on my arm and a sore throat the next day.  But it's done.

CF clinic was today.  It was good.  I really feel blessed to have the team we do.  They are SOOOOO caring and personal.  If you go to cff.org and look up your care center, you can actually see how many registered CFers there are being cared for at that hospital.  Well, since there is another non-military CF center just down the road from us, there really aren't that many CFers being seen on the military base where we get Logan's care.  16 to be exact.  And Logan is the youngest.  So he REALLY gets some very personal care, especially for being a military brat.  I can't tell you how much it means to me when we walk into the Peds clinic and they all say "Oh hi Mr Logan!"...  To be known by name in a military hospital is a pretty big deal.   Anyway, just a few little changes this time but all stuff I'm excited about.  Since he is only doing Albuterol right now, with the pulmonologists approval, we've decided to try administering it via inhaler rather than nebulizer.  I cannot express how excited I am about that.  It should knock out about 20 minuts of  therapy time during the day.  Doesn't seem like much, but it is to a 5 month old.  Other than that, just a little bit of diet adjustment and we're adding in an antacid because he's having just a wee bit of reflux and we want to stop it before it gets bad.  Overall, good expirience, good news and a big sigh of relief from yours truly.

Funny story from this morning.  So, since Landon works a night shift he's on a very different sleep schedule than me and Logan.  So in the morning, before Landon goes to sleep and just as Logan is waking up, he does the neb/cpt and then goes to bed.  I do the neb/cpt in the evenings when Landon is either at work or sleeping.  So I had to be up early this AM for work, so Landon was doing Logan's treatment as I was flat ironing my hair.  Landon's not the most musical of folk but when he thinks no one is listening he may mumble a song under his breath ;)  So I'm in the bathroom doing my hair and I hear Landon singing in the other room *insert musical notes here* "I beat my baby, I beat my baby!  Daddy beats his baby"... with jovial inflection.  Oh my gosh I thought that was funny.  We always call Logan's cpt's his "beatings" but for some reason when it was said in a sing-song voice it was much more humorous.  Oh I love my boys :D. 

Well, one job down today, one to go.  Must log off the internet... need to leave in 20 mins and i'm not even close to ready.  LOVE LOVE LOVE!