Humble Pie :)

I can honestly say, I hope no one uses me as a role model.  I pray my children model after Christ, their perfect Savior, and not their very imperfect mother.  I have been very convicted today by my attitude regarding insurance.  I let frustration get the best of me instead of focusing on the blessing that abounds in my life.  God has always supplied our every need.  William has never gone without medical treatment, medication, or equipment.  Sherrod has never gone without medical treatment, medication, or equipment.  I've never had to watch my child struggle to live because we couldn't meet their needs or get them medical treatment.  None of our children have ever wanted for food, clothing, or shelter.  Even when things were hard, God has always made a way.  It's the reason we chose not to go with SSI to begin with...because we wanted to fully rely on Him.  Others may have made a different decision and that's okay.  This one was ours.  And He's NEVER let us down.  And He never will.  I know that.  We don't trust in Michael's job or our insurance or money itself.  We trust in Someone much bigger than all of that.  Someone Who controls it all.  He never promised it would be easy.  He never promised we would be able to do whatever we wanted, whenever we wanted.  He never promised we wouldn't have to work or sacrifice.  But He did promise to supply all our need according to His riches in glory through Christ Jesus.  And THAT I can rest in.

May the Lord continue to grow me in strength of faith and character in the coming year.

Frustration

So...I kind of dropped off of my posting here because so many of my family and friends are on FB.  It was easier to just post everything there because I always post from my mobile.  But, as you can tell, I've gone back to the blog.  After William's most recent scary episode, Michael felt it would be better to keep everything about William here on his blog (and some tidbits about our family).  So here I am again! :)  That said, for those of you who are friends with me on FB, you know the frustration we've had with our insurance over Sherrod's insulin.  Grrr... We've often fought with them over William's needs, too.  It seems that our insurance company views my children as lab rats.  Experiment to see what works so they don't have to pay out the money we've already paid in if they can keep from it.  Why am I so frustrated about this today, you might ask?  Well, William's nebulizer quit today.  In my panic to get another one before his next treatment, Michael and I ran to the pharmacy and, you guessed it, the pharmacist informed us that our insurance does not cover his nebulizer.  Of course, we got it for him anyway.  The same as we did with his Vest.  AND with his Cough Assist.  AND with assistive walking devices.  I'm wondering if they aren't trying to force us into Government controlled healthcare? We've never taken SSI/disability for William for SEVERAL reasons.  Would private insurance try to force us into this?  Anyone have any experience or thoughts?

Anyway, William got his new nebulizer.  His last one was a plain ol' grey, drab nebulizer.  This one is a cool kangaroo one and he was pretty excited!

The pouch holds the neb cup when not in use.  Pretty cool, huh? :)

3 week x-ray

Well, today was the day.  The 3 week mark.  The day for William's x-ray.  I really expected it to be clear, as he is doing so much better.  But it wasn't.  There is still one small spot in that right lobe.  Ugh!  A new medicine and 3 more weeks.  The good news is that the homebound restriction is technically lifted.  The bad news is a new illness could be really, really bad, so we still have to be very careful.  So....3 more weeks.  Sigh.

William's Western Shindig

Anyway Love

Okay, so I admitted yesterday that I've been struggling.  Wondering if my faith is as strong as I believed it was.  Today, I was looking over William's blog and I noticed several "draft" posts that never got posted.  The one that follows was in there from February 2010.  I don't remember it and it's especially strange because I see no reason why I would post it on William's blog.  I don't know where it came from or I would cite the author...

On Valentine's Day, Meg went all out, giving her husband, Peter, his favorite candy and tickets to a hockey game. Later that night, she wrapped herself in a special outfit purchased just for the occasion.
Peter got her a card.
At the grocery store.
That he purchased on the way home from work.
He didn't add anything to it, either. He just signed it, "Peter."
A couple of days later, Meg tried to explain that she felt a little taken for granted. Apparently, Peter misunderstood her intent because two months later, when they celebrated their anniversary, Peter didn't get Meg anything.
"How could you not get me anything for our anniversary?" she asked Peter the next day. "Especially after our conversation about Valentine's Day."
"Well, I thought about getting you something, but it didn't work out," he replied. "And then I knew not to get you a card because you said you didn't like that last time."
"It's not that I didn't like the card. It's that the card alone seemed a little sparse. But even that is better than nothing ..."
Several months later, Meg had a birthday. This time, Peter got her a present – a kitchen tool set. Several weeks before, Meg had asked to borrow Peter's tape measure and screwdriver. Peter figured that Meg should have her own small set of kitchen tools so she didn't have to borrow his.
Meg recounted all this and then explained how she had tried to get her husband to read several how-to books on loving your spouse. He would read the first few pages, lose interest and never pick the book up again.
"I've realized this is never going to change," she confessed. "But I love him anyway."
...Because
That last statement of Meg's, "but I love him anyway," is one of the most profound theological statements on marriage I've ever heard. Most of us base love on because, not on anyway. I love you because you're good to me. I love you because you're kind, because you're considerate, because you keep the romance alive.
But in Luke 6:32-36, Jesus says we shouldn't love because. We should love anyway. If we love someone because that person is good to us, or gives back to us, or is kind to us, we're acting no better than anyone else. In essence, Jesus is saying you don't need the Holy Spirit to love a man who remembers every anniversary – not just the anniversary of your marriage, but the anniversary of your first date and your first kiss. Any woman could love a man like that. Or if you love a wife who lavishes you with sports gifts, who goes out of her way to make you comfortable when you get home from work and who wants sex anytime you do – well, you're doing what any man would do. There's no special credit in that!
But if you love a spouse who disappoints you, who can be a little self-absorbed – now you're loving anyway. In doing that, you're following the model of the heavenly Father, who loves the ungrateful and the wicked.
... Or Anyway
Will you love only because? Or are you willing to love anyway? Will you love a man or woman who doesn't appreciate your sacrifice? Will you love a husband or wife who takes you for granted? Will you love a spouse who isn't nearly as kind to you as you are to him or her?
Just about every faithless marriage is based on because love. Christians are called to anyway love. That's what makes us different. That's what gives glory to God. That's what helps us appreciate God's love for us, because God loves us anyway. He gives and gives and gives – and we take Him for granted. He is eager to meet with us, and we get too busy to notice Him. He is good to us, and we accuse Him mercilessly when something doesn't go just the way we planned it.
But God loves us anyway. To love anyway is to love like God – and to learn about God's love for us.
That's love, the way God intended it.

This really made me think of God's love and my love for Him.  Do I love HIM anyway?  It's easy to love Him because...because He blesses me, because He takes care of my needs, because He protects me, because my life is easy.  The hard part comes on the anyway.  When times are hard, do I love Him anyway?  When I don't understand, do I love Him anyway?  When I am angry and hurt and broken, do I love Him anyway?  Do I understand that He is in control of all things AND that He works all things together for the good of those who love Him and who are called according to His purpose?  Do I trust His plan?
Yesterday, I was speaking with a friend and sharing my doubts of myself with her.  She lovingly reminded me that no one is able to bear hard things well, except for the grace of God.  God gives grace as it's needed.  Right now there are certain graces I don't need, but there are many that I DO need.  God gives me the graces I need in the time I need it.  (Thanks, Tanya!)  I do feel reassured.  I'm still struggling with my sleep, but I am praying through that, as well.  Fear still grips my heart at times, but I'll keep praying through that, too.  God's grace.  God's timing.  Perseverance.

I'll end with this song that has become a favorite of mine.  A friend sent it to me when I was in my 38-hour labor with Titus.  :)  By the grace of God, may I always be able to say, though He slay me...

https://www.youtube.com/watch?v=qyUPz6_TciY&list=RDqyUPz6_TciY

P.S. Until today, I had only heard the song, not the message from Piper.  God is good all the time.  I feel as though He is bringing things together to reassure me.  Praises to Him.

Hard Things

So, I've never been a person to be gripped by fear.  Fear has never controlled my life or driven my thoughts.  I've never been a "what-if" person who is plagued by thoughts of dred.  Yet, I find myself in new territory.  I've been questioning if my faith is as strong as I once believed it to be.  Ever since I saw my little boy lying in that bed, helpless and limp, breathing on the ventilator.  I remember crying out to God, but all I could think of is that I'm not strong enough to walk this road.  I have friends who have walked hard roads in life who are a vision of strength in the Lord.  Who never waver.  Who praise Him faithfully in all things.  Who say, without hesitation, "The Lord gives and the Lord takes away.  Blessed be the name of the Lord."  Is this me?  Can I be so unwavering?  I don't know.  I honestly don't know.  I don't think anybody really does until you're in it.  I'd like to think my faith is that strong.  But I truly don't know.
Ever since William got out of the hospital this last time, I've been plagued with nightmares.  I'm not sleeping well.  In fact, I don't even like to go to sleep.  All I can see when I close my eyes is William lying in that hospital bed, appearing lifeless.  And my vision will shift between him and Riley until I can't tell the difference between the two.  It's weird and it haunts me.
Riley is my nephew.  I can't even describe how much he and William were alike.  Many of the same issues.  Much of the same heart, sweetness, and orneriness.  Riley stopped breathing 7 years ago and he never returned to us.  He was 6 years old at the time and he would have been 14 today.  William was 4 days old and he never knew his cousin.  That is truly a loss.  They would have enjoyed each other immensely.

Riley 2006, his brother, Kash 2013

My sister is a woman of strength.  She continues her life.  I admire her.  She did not let this great loss defeat her, make her into something she is not, define who she is.  Could I do the same?  I don't know,  but I pray I never find out.
It bothers me that I know that William's condition will likely shorten his lifespan.  It bothers me that there is little I can do for him.  It bothers me to not be in control of all things.  It is a daily struggle to give my cares to the Lord and not worry.  He had a whole year with no illness and I really fooled myself into thinking the worst was behind us, that he was strong, that the worry was over.  Now it's back with a vengeance.  How do I let go? How do I let him be a regular little boy and not fret over everything he does? Over every person he comes into contact with?  How do I not drive myself crazy trying to keep him healthy?  I know the answer lies only in my trust in the Lord.  That is my struggle.  Daily faith.  Constant trust.  True belief.  Lord, I believe, please help my unbelief.

William

Oh, this boy! He just melts my heart!

Last night when I finished singing, he leaned over and said, "I just love you.  ALL of you!" LOL! I'm not sure if that was a reference to my singing ability (or lack thereof) or not, but I sure know that it made me smile!  He does that often!  Out of the clear blue he'll just lean over and tell me he loves me.    He is such a blessing!  My heart overfloweth!

Home Bound

William asks me everyday when he gets to go somewhere.  When he gets to see his friends.  When he gets to see his friend, Matthew.  When he gets to ride his horse.  But he's still pretty weak.  His doctor appointment Monday went well, but it was like a covert operation.  I left him in the car with Sherrod while I went to the receptionist's window to check him in.  She opened the back door so he wouldn't have to wait in the waiting room, but go straight in to a room.  We washed and sanitized and got all OCD about cleanliness and germs.  Yet, this morning he awoke with a cough.  Ugh.  Two weeks until we go for his X-ray.  I think we'll all be a little stir crazy by then.  We aren't allowing any of the younger children (10 and down) to go anywhere.  The adults are all careful about where they go, except Michael, who has to work, but he's fanatical about cleanliness and changing his clothes.  We've not been allowing visitors over, either (that's a real bummer).  We are praying he gets the all-clear in 2 weeks.  Two more Sundays.  12 days.  I miss date nights with my husband (yes, even that's gone by the wayside for now)!  I miss our Church fellowship.  I miss the fellowship of our homeschool group.  I kind of feel like I live in a cave, but it's all worth it for a healthy boy!

Respiratory Therapy

William's home therapy station...

Suction machine (top left)
Nebulizer (top right)
Cough Assist (bottom left)
Vest Airway Clearance (bottom right)

He's been back to 4x daily for all 4 machines since he left the hospital.  He goes in for a recheck today.  I think he's sounding pretty good.  He's still really weak, though.  He isn't really crawling around much, but prefers to be carried.  Sometimes he wants to walk but it's usually about 20 steps or so, then he's spent.  I don't really know how much to push him and I'm kind of waiting until he gets the all-clear to push too hard.


As a side note...William really likes his hair to be cut short (he especially wants it to be cut like his friend, Christian's).  He was after me at the hospital about it being too long, as he really needed a haircut before he was admitted and 3 weeks later he was looking a little grizzly. :) Anyway, the day he got home I cut his hair.  He doesn't typically like for me to cut it because my clippers vibrate too much and I take too long.  :) However, since he's homebound, I told him he couldn't go to the salon for a haircut, so he tolerated mine.  I cut his hair while he was lying down.  Now, what hairstylist would do that? Well, as you can tell, there's a s slight diagonal to the front of his hair, but he was done and I didn't push it.  Unfortunately, the OCD part of me is really struggling with this...

Home Update

William is doing well at home, though still very weak. He is homebound for the next 6 weeks while he continues to heal. There is still a spot in his right middle lobe that must come out. We go to the doctor in 3 weeks to recheck it. If it's still there, he will have a change in medication then another 3 weeks. If it's still there after the 2nd X-ray (6 week mark), he'll have to go back into the hospital for a bronchioscopy to get a look at it. If the doctor can clean it out then, he will. If not, it will require surgery. Thank you for your continued prayers on William's behalf.

Home

AND...we're outta here! 3 weeks felt like forever! (Still with a long road ahead.)

Everyone is so happy to be together again! 

Superstar

William is the talk of the floor. He's been walking around, playing his harmonica today. He's had other parents and nurses from the other section coming up to ask him to play for them. So cute!

Improvements

Getting better all the time! If X-ray looks clear tomorrow and he continues to improve, we might get to go home Sunday! Whew! 3 weeks is a long time!

Special Visit

Look who came to visit William...

Update

William made it through the entire night with no supplemental oxygen! Dr says he's doing very well but we're still looking at a few days to clear out that lung more. If we don't get it cleared completely there's a risk of secondary issues requiring surgery, so we definitely want to get it cleared up! William's blood pressure is elevated again, which could be a side effect of his medication. Just something to watch. I cannot express our love and gratitude enough to all of you who have been praying so diligently for him and caring for our family! Love to you all...

2 weeks

It's hard to believe it's only been 2 weeks. Feels like 2 months...

Family Day

William is doing really well! Today we were allowed to take him into the playroom for a brief time of family worship. Last night they tried to leave his oxygen off but his sats dropped too low. His is being weaned off one of his medications over the next 3 days. In that time we need to get him eating consistently, moving more, and able to handle being off oxygen 24/7. Still praying...

Getting Better

William has been off of the bi-pap since 5:00 last night. He did great through the night, althought we almost put him back on several times. He has to maintain OS 90 or above to stay off. He's had a few brief dips, but has managed to pull back up pretty quickly. Lung is looking much better, but he still has a significant amount of atelectasis that must be completely cleared before release. Dr isn't keen on moving him out of ICU and said we will start discussing that when he's been off the breathing machine for a minimum if 72 hours. He's getting up to walk 4x a day for about 5 minutes each. We're trying to increase that time. Speech therapist will be in daily, as feeding is much better, but still having issues. Not with choking or gagging, just with eating in general.

Off Breathing Machine!

This momma is on night watch...watching this precious boy sleep. With no breathing machine! Just a little oxygen! He's been off the bi-pap this go around since 5:00pm and it appears he might be done with it! Praise the Lord!

Update

William is doing phenomenally well!! Off breathing machine for 3 hours this morning. Ate eggs, yogurt, and a grape without choking. Walked with PT about 20 steps using walker. Sat in chair playing the rest of the time. Talking, laughing, playing. Wonderful!
No X-ray today. We'll take one tomorrow and get a look at that lung. After his 4pm therapy, we'll take him off the breathing machine for as long as he can handle it. Don't know if that means through the night or not. I suspect they'll put him back on around 10 if he's still off of it.

A little food...

William was happy to have cookies from his sweet friend, Catherine, tonight! Even though he only took 4 or 5 small bites, this was his first food with no choking or gagging since the incident! I'm finally starting to relax!

He is thoroughly enjoying his visits from his sweet friends and it is so good to see him sitting up and playing!

Dr just came in to check William. We discussed how well he did this afternoon and evening, as well as treatment information for tomorrow (we'll be shooting for 2 - 2 1/2 hour increments later in the day). As he left he said, "And tonight I want YOU to get some sleep...you're starting to look pasty!"
LOL! 

Update

Praise the Lord, William is doing fantastic tonight! His last attempt off bi-pap was 2 hours and he's well over an hour with this one with no signs of distress. We think we may have the morning issues worked out for the regression. We'll know for sure tomorrow. So far, so good on the new medication. We were able to get ahold of the machine to assist with his cough, thanks to Reformation Heritage Fellowship and Mr. Timothy Norwood! Mommy truly feels that he's turning the corner and we are so appreciative of the milk deliveries  and extra care for our family! Love to all, Sarah

We are so thankful for all of you!  When William woke up from the ventilator, the first thing he wanted was his balloon, which had been taken home while he was sedated.  Our sweet friends answered the call, though, and he ended up with plenty!

Update

At about noon, William had a miraculous turn of events. He was able to come off the bi-pap for about an hour and was even able to complete about 10 minutes of PT. Dr is encouraged by his sudden strength and we are trying to manage it diligently. We have not started the new medication yet, as Dr is going to see how long this new event holds up. William's right lower lobe is still heavily congested with no change from yesterday so if that doesn't start changing we'll have to start the meds anyway. Thank you all for the prayers and continued support!
Oh, and the other thing, his respiration rate has come down some (that's a good thing...it means he's not having to work so hard) and his heart rate is lower, too. His BP is still at the high side of normal, which is probably medicine related. The big thing is, he's been awake and coherent since noon, though he's starting to tire.

Update

William did great on the trial wean tonight! He couldn't maintain oxygen so they have him a noseband, but at least the lungs worked! Tomorrow: we practice at longer intervals and eating.

Update

I'm sorry for the missed calls/messages and for not updating sooner. It's been a busy day. William has been in a real struggle. We think we might be through the mucus plug, though. He's been on the bi-pap since 1:30 this morning and has done well. They have been slowly weaning him from the bi-pap today and plan to remove it for up to 30 minutes this evening when the doctor returns. He will definitely sleep with it tonight, but if the removal goes well we will work on permanent removal tomorrow. William is, of course, still extremely weak and is limp and lethargic. I do not know at what point they would expect to see his strength returning, but it's not started yet. The breathing treatments and CPT are still very taxing to him and it takes him a few hours to recover. Just as he recovers from one, it is time to start the next one. Thank you for the continued prayers and support. We've been we'll taken care of and well loved.

Ventilator

Wow.  It is easy to get lulled into a false sense of security when things have gone so well for William this past year.  What should've been simple just isn't.  Thursday morning William stopped breathing.  It was the scariest, most heart-wrenching thing I have ever experienced.  Sydnee was with us and I don't know that she'll ever truly recover from seeing her brother stop breathing and the emergency team rush in and take over.  They put him on a ventilator, but even then he continued to struggle.  A mucus plug had broken loose and plugged off his airway.  That happened 2 more times while on the ventilator, which was beyond scary.  I didn't even know a person could stop breathing while on a vent, but I guess when mucus plugs the airway it just can't press through.  Fortunately there was a medical team there to overcome it.  They had to hand bag him (Ambu bag?) until he was stable.  The third time they knocked out his vent, but after the plug was gone he seemed to do well with the bag, so they opted to put him on a bi-pap machine.  William made it through his last CPT without event. He is resting well on the bi-pap and his chest X-ray showed that his lung is nearly 1/2 cleared. Thank you for your continued prayers for him. Dr. says as long as mucus remains in the lung we run high risk of it blocking his breathing again. I was able to take a 10 minute power nap and feel refreshed.

Hospital

William aspirated on Sunday and is in the hospital on a 7-day course of IV antibiotics to clear his lungs. After that we'll re-evaluate where he is. Hopefully that will clear him up. It didn't last time, so they had to do a bronchioscopy, which will mean 10 days. 
He is already doing SO much better and looks like his old self again. He's already bored!  He has truly appreciated his friends visiting him. Thank you! It really brightens his day!

Fall Fun

It's been a busy and fun fall!  Lots of adjustments with a new baby around, loving on him and playing with him, new horses and training, and lots of school!  I took only the 5 boys for a full day of shopping and fitting for William's new orthotics and they were so helpful, precious, and well-behaved!  I am so proud of them!  They really rose to the occasion!  (Titus was in the office, too, but I was holding him!)

Fun at the zoo

Here is a picture of one of William's dear friends, Victoria.  She leads his horse during therapeutic riding class and is an all around blessing to William and our family!  He loves her dearly!  Of course, she's a lovely young lady, but the best part is she's just as lovely on the inside!

White Cane Awareness

October is White Cane Awareness Month.  Don't be in too big of a hurry to pay attention to those around you!

I dred the thought of William traveling alone!

Turtle Trapping

Yep, that's my kiddos...turtle trapping.  But, no, they weren't swimming in the pond!  They had previously been swimming in the pool.  I'm not that ____ (brave, crazy, wild, liberal, relaxed...insert your favorite word here)! :)

Welcome Titus

The Lord has blessed us once again!  Welcome to our little Titus...we are so very thankful for another sweet, precious gift from God!

Summer Fun

 

4th of July:

 

Bottle Babies

4th of July rodeo

Love playing in the dirt!

Low Vision Therapy

Isn't he just the handsomest!!!

We were very excited about the new low vision clinic at NSU!  After his evaluation there, William has been seeing therapists from a clinic for the blind.  He's doing really well.  His therapist recommended we get him an iPad for some specific tracking/learning apps for blind children.  He does great with it and loves it!

New Processors

We were very excited to get William the new N6 Cochlear processors.  He loves the cool, new processors...

And we're all pretty sure that Cochlear's new aqua accessory is one of the best items ever invented!

7th Birthday

WOW! Look who's SEVEN!!!  That's just the sweetest face EVER!

Fun Together

AiG science time with Abby.  Fun, educational, endearing.  Blessed!

Silly fun with Daddy...