Alright...I get it

Alright, God...I get it.  How many times have I had to say that to God?  Over and over again, God tells me (and shows me) just how faithful He is, and how He truly cares about the details of my life.  Why am I so hard headed?  I frustrate myself!  Last week, Ian ended up having another surgery to tighten the pins and adjust the halo.  I was praying against this, but at his check-up on Monday, the neurosurgeon said it had to be done.  It wasn't necessarily urgent, but he didn't want us to have to wait over Thanksgiving to have it done, so he scheduled it for the following day (Tuesday).  It's funny, because I know in my mind that I can trust God, but my heart...well, sometimes that's just a different story.  I'm learning very s l o w l y.

My dad came with me to the hospital.  We got Ian admitted and waited for a while before Dr. Fedor came in to talk to us.  Ian was doing amazingly well, just playing in his bed and waiting patiently.  He told us that the surgery wouldn't take too long, but there was a chance they would have to move a pin or two if they weren't seated correctly.  Ugh...I prayed against that too!  But, I completely trust Dr. Fedor and his judgment, knowing that he truly has Ian as his first priority.

A while later, Ian went into surgery and my dad and I went into the waiting room.  Why was this so hard for me?  I tried to talk myself into being calm.  I prayed for peace, but my mind just wouldn't stop!  I was trying not to cry, trying to keep busy, but I couldn't focus.  I was worried that we were facing the wrong way and we wouldn't see the doctor if he came out, and on and on.  My dad finally looked up from the book he was reading and said, "Stop freaking out.  Just find something to do.  Don't look at the clock or the surgical board for a half hour."  I didn't want to do it, but I knew he was right.  So, I got out my BSF lesson and started working on it.

Funny how the Lord works.  The lesson I was on that day had me reading Matthew 10:17-31.  When I got to verses 29-31, I almost couldn't breathe.  "Are not two sparrows sold for a penny?  Yet not one of them will fall to the ground apart from the will of your Father.  And even the very hairs of your head are all numbered.  So DO NOT BE AFRAID; you are worth more than many sparrows."  See, sometimes, God has to hit me over the head with something like that to get my attention.  I feel like God was saying, "Hey!  Hey, you!  Can you hear me?  I CARE!  I've got this covered, so stop worrying!!!"  It took me a good few minutes to get myself together after that.  I just thanked God over and over again.  Finally, I showed my dad, and he just laughed at me and jokingly said, "I don't see any relevance in that at all."

I was just sitting there with my Bible, reading that passage over and over when Dr. Fedor came right over to me (from behind...remember, I was worried that I had my back to the door?) and let me know that Ian was out of surgery and was waking up and that everything went just fine.  He was able to tighten all the pins and make any adjustments needed.  At the end of our conversation, he told me how glad he was that he did the surgery because the pins were much looser than he had initially thought, and he had to tighten 7 out of 8 pins at least 2 mm.  I was thankful it was all over.

We went back to see Ian and although he had a VERY rough time waking up from the anesthesia (another reason I was thankful to have my dad's calming presence with me), he was just fine.  He ate two huge Popsicles and some ice cream :).  All was well, and we were cleared to go home.  After a very long drive home, I finally felt like I could relax and spend some time just thanking God for that day.  I am so grateful (not always at the time, but after) for these storms of my life.  They so clearly demonstrate His faithfulness, kindness and grace.  As I was going to bed, I saw this sweet reminder that my cousin had mailed to me just the day before, and I hope you find encouragement in these verses too...

I truly enjoyed our Thanksgiving, knowing we have so much to be thankful for.  We spent time with family, and I hadn't been able to spend much time with Flynn on Monday or Tuesday, so that was a huge blessing just to be able to cuddle and love on him.  And, it was a great time for all our family to love on both our boys.  Thanksgiving couldn't have come at a better time :)!

My Fear in the Storm

Fear.  This is something I struggle with daily.  I have a myriad of fears, to be honest, but my most recent battle with fear relates to Ian (surprise!).  I completely realize that my fear and worry do not help my current situation - or any situation, but the worst part about this struggle is that it's a battle with my own sin, and it separates me from God.  It is a daily battle to bring it back to Him...the only one who can calm my fears and bring peace to my heart.

On Sunday afternoon, I was carrying Ian and I noticed that I could hear a rattling sound coming from the vest and/or halo.  I tried to ignore it, so I didn't say anything to him or even investigate further, although I secretly worried.  But later that night, when I was putting Ian to bed, he tells me that his halo has been "clicking."  Great, it wasn't just me who had been hearing it.  I told Jason, and he immediately checked to see if there was any movement of Ian's head in the halo, and sadly, there was.  I knew I'd have to call the neurosurgeon in the morning to let him know.  I tried to find calm, reminding myself that he was acting fine.  Yes, he was complaining about the clicking, but he wasn't having any pain at all.  I actually put off calling the doctor's office until Monday afternoon.  I had to leave a message and the nurse called me back on Tuesday.  She wanted more information and she was going to run it by Dr. Fedor (our beloved neurosurgeon).  She said she'd probably be calling me back the next day (Wednesday) after the doctor had time to respond to the message.  I was feeling better...she wasn't panicked, and was simply going to let him know.

Not ten minutes went by before the nurse called me back wanting to know when we could come in.  Apparently, she had sent the message to Dr. Fedor, and he responded RIGHT AWAY, asking for us to come in ASAP.  He wasn't going to be in the clinic on Wednesday, but he was going to come in (from surgery) to see Ian as soon as we could get there Wednesday morning.  Let me just say that at that point, I started freaking out (inside) and my mind went all sorts of places that involved fear and worry.  Why was this such a big deal?  He's coming in just to see Ian?  Will he need surgery?  And on and on and on...(you get the picture).  I told Jason, and immediately I started to cry.  A while back, I shared how I feel like I'm always on the verge of a meltdown these days, and this just pushed me over the edge.  But, let's just step back for a minute...nothing had even happened yet!  All I knew was that the doctor wanted me to bring Ian in the next morning.  I knew that I had to bring my fear to the Lord.

Tuesday night, we decided it would be best for Ian and me to go stay overnight at my parent's house in Claremont so we would be closer to LA.  After everyone went to bed, I knew I needed to spend some time praying and reading God's Word.  The fear was overwhelming at that point, and honestly, I don't know why.  It wasn't a huge deal, but it was really affecting me.  I literally felt sick.  As I sat down, I opened to where Philippians 4:6-7 were clearly highlighted - Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God which transcends all understanding with guard your hearts and MINDS in Christ Jesus.  I prayed for the Lord to give me the strength to trust Him with every detail of my life - including Ian.  As I flipped through His Word a little more, I kept coming across verses about peace.  Colossians 3:15 Let the peace of Christ rule in your hearts...you were called to peace and John 14:27 Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid.  Wow!  He wanted me to be reminded to see His peace instead of being a slave to my fear.  As I went to bed, I did have His peace and comfort.  I was actually able to sleep - a little - as a side note, I do not recommend sharing the bed with a very affectionate four year old in a halo...it's downright dangerous!!

Storytime with Papa

The next morning, we made the drive to LA (where thankfully, Jason was able to meet us) and saw Dr. Fedor.  I truly had peace.  The fear that was overwhelming me just a few hours earlier was gone.  We were so grateful that the surgeon was able to tighten the screws and make a few adjustments, and all those things that I so greatly feared were not coming to pass.  It was painful for Ian, and that is always so heartbreaking, but he was feeling much better after a few minutes and we were on our way.  Dr. Fedor told us that if this happens again, he will have to do another surgery to fix the halo (since we're only 3 1/2 months into the 6+ months he needs to wear the halo).  And...there it was again...the fear started creeping back in.

Waiting to see Dr. Fedor

 I realize that this is a constant battle for me.  It's a battle for many women (if not all) in some form or another.  This situation was a great reminder for me to BRING MY FEAR TO THE FEET OF JESUS!  My dad told me something a while back that has really stuck with me.  He said, "When you feel afraid and worried, that is the Lord reminding you to give it back to Him."  I have to do this over and over and over every single day, but He is always faithful and He wants me (and us) to have His peace.  The battle against fear and worry is one worth fighting.  Especially in times when He is calling us closer to him, because our fear can cloud our minds and keep us from leaning into Him.  I'm a slow learner when it comes to things like this, but I'm forging ahead, daily (hour by hour and minute by minute) praying that I'll trade my fear for His peace.

Ian asleep on the way home...sweet boy.

Caring for the Halo

Warning...this post may be of no interest to you at all!  But, I'm writing it for that one mom who has a little one in a halo device and is desperately searching the web to find information :)!  I know I couldn't find anything, so I decided to write my own!

When they sent us home from the hospital, one of the things I was dreading was cleaning the pins!  Was it going to hurt him?  Would I do a good job?  Let's just say that I was having a lot of anxiety about the whole ordeal (along with giving Ian a "bath" - so I might as well cover that too).  The first night home, I didn't have the courage to bathe him and clean the pins.  I had decided he'd had enough trauma and I didn't feel that I needed to add to it.  But, when the second night came around, I knew there was no avoiding the bath and pin cleaning.  The kitchen sink seemed like the best place for the bath - we have a big island with a sink that has a pull down spout.
Here he is in his superhalo cape eating a cookie and ready for a bath...

One of the things the doctor had told me was that his hair could be washed by laying him over the sink, so I laid him down on the counter and ever so carefully washed his hair - well, I washed the top of his hair.  I still haven't figured out how to wash the bottom section of his hair in the sink, so I wash the bottom section with a rinseless shampoo.  I then had him sit on the counter with his feet in the sink while I scrubbed him down with a washcloth.  It's always important to clean the pins thoroughly, but it's especially important after you wash the hair.

I couldn't avoid it any longer...the pins had to be cleaned.  I used hydrogen peroxide and Qtips.

Crying was the response I was expecting, but honestly, it wasn't bad.  Ian didn't cry at all.  He actually seemed to enjoy the cleaning - I think they were itchy and the cleaning helped releive some of the scratchiness.  I wiped around each pin with a clean Qtip.

At this point, the sites were still very new and I didn't notice any bubbling at all.  As time has progressed, the sites have become much less clean.  Starting at about week 7, I noticed some crusties (for lack of a better word) around some of the pins, and now, at week 10, all of the pins in the front need to be cleaned twice daily to keep the crusties at bay.  There has also been a small amount of bleeding at two of the sites, so yesterday, I started using an antibiotic ointment (Polysporin instead of Neosporin because Neosporin has been known to irritate skin over time) at the pin sites.  I am going to use the ointment for a week or so and then see how they react.  My stepmom is a nurse, and she suggested not using the ointment intermintently, because it can create bacteria that is resistant to the antibiotic, but instead to use it consistently over a period of time and then stop.

To be honest, the biggest issues we have are with the pins.  I'll address some of the other issues we've had, in another post, but these darn pins are what Ian complains about the most.  He's had pain, itching, and swelling from the pins and we have yet to find a way to remedy all of the issues we've had with them.  Hopefully, as time progresses, we'll figure things out more and I'll be able to share that with you too!

Here he is all clean and ready for bed (and I couldn't resist the last picture of him asleep in his bed with all his friends)!