Our Crazy Week

So, it's been a really crazy week.  Last Monday, Toby began acting strangely and I was convinced he was in shunt failure; he had all the typical signs - lethargy, crying, complaining of headache, loss of appetite (nausea), and he was more out of it than I'd ever seen, so we called 911 and headed to the hospital.  I wasn't comfortable driving him there myself, he was limp, pale, and let's just say it takes quite a bit to rattle me now, and I was rattled.  It wasn't his shunt, or at least we're not sure - upper respiratory infection and an ear infection seemed to be the diagnosis.  It seems kind of silly to call the squad for an ear infection, but I've never seen him that listless with just "normal" childhood illnesses.  A very dear friend called me while Toby was in the hospital and reminded me that it's possible it was the shunt, but God healed him in the middle of it - that is very possible.  I know that sometimes I forget the power of prayer.

From top left to bottom right (like you're reading a book) is what Toby looked like on Monday at 4:00 p.m., that night in the ER, during music therapy on Thursday, and at the park on Saturday.  Quite a transformation for sure.  He did have some moments of perkiness in the hospital.  We had a great PCA a few days that washed Toby's hair with these caps that have the soap and everything all in one - and they are kept warm too.  After the washing, there's no rinsing so it's a perfect way to wash hair in the hospital (I wish we had some for home - especially on those days when I really need to get out of the house quickly).

So, Toby was discharged on Thursday to find out at an ENT appt. that he has a double ear infection; after one dose of antibiotics he perked up, but I will say that he runs out of energy quickly - I noticed that even today.  Between Lon Nell (Bruce's mom) and my mom they were able to keep life flowing at home with the kids.  On Thursday night my mom asked if I wanted to start painting the kitchen.  We've had the paint for almost two months, but I just haven't had the time to do it (go figure).  Conor and Garrett were previously scheduled to spend the weekend with Aunt Lynsey, so I thought "why not, might as well end a crazy week with a crazy weekend?"  So, we did - we painted the kitchen, and I was so inspired that I went ahead on Saturday and did the red painting we had planned on in the living room (including an 18 foot wall or so).  This is the before pictures:

And after:

We did manage a walk and a trip to the park with Caris and Toby.  I wanted to go to the pool, but Toby didn't really need to be over-taxed  by the heat, so we stayed inside, and managed to host company today on Memorial Day.  Our fun was cut short, though, by a trip to the urgent care - our friends' son was going down the slip-n-slide and broke his finger.  All in all, I guess you have to laugh at the comedy of errors of the week....and through it all I keep hearing this chorus in my head by Stephen Curtis Chapman (his Beauty Will Rise CD is my latest fix for music and much encouragement):

"And I will trust You, I'll trust You; trust You God, I will.  Even when I don't understand, even then I will say again.  You are my God, and I will trust You." 

Hoping this next week is filled with much trust in God, and is a little less uneventful!!

Seizing the Moment

So, Conor had to have oral surgery yesterday.  He had two extra teeth in his mouth that he didn't need.  We found this out after having a consultation/x-ray with the orthodontist a few months ago.  I had to laugh when I called Bruce and said "You won't believe what we just found out!"  He knew exactly - remembering that he also had an extra tooth around that age that needed to surgically removed.  I know oral surgery really isn't a big deal, but it will be his 2nd surgery in 7 (almost 8) years; it's not really anything compared to others or his younger brother Toby (9 surgeries in 4 yeas), but when you expect your healthy kids to be, well...healthy - it's unexpected!!  He had eye surgery when he was 3-years old, his eyes crossed and the glasses weren't really working, so they had to move his inner eye muscles.  It was a really crazy time in our lives - Conor was 3 1/2, Garrett had just turned 2, and Toby was about 8 weeks old and in-patient at Children's (having just gotten his trach, gj-feeding tube, and needing ventilation full time).  I laugh at the irony - we had one child in-patient and one child out-patient at the same time - sort of nuts.  SOOOO...all that to say I didn't take any pictures of  Conor's first surgery.  I think I was just too overwhelmed. I  remember when he came out of surgery - his eyes were bloody.  They weren't just blood-shot - they were bloody and he refused to open his eyes for almost 6 hours.  I finally got him to open his eyes bribing him with a PB&J sandwich.
Surgery this time was much easier, and I resolved to take lots of pictures.  I take pictures of all of Toby's hospital stays, tests, and surgeries, we might as well document this event too.  So, here are some photos of Conor's mouth!! (warning - a little gross).

When I went back to see him afterwards, he was still a bit loopy from being under and had the nurse cracking up with his large vocabulary!!  He was making me laugh too because he wanted to sit up even though he was very unsteady.  Only one dose of pain meds yesterday, and doing so well he went back to school today.  I was surprised by that.  I'm really glad I took the photos - he's growing up way too fast!

Organizing

Can I just tell you that I have fallen in love with the Container Store these last few weeks?  A friend of mine got me started (so Bruce can blame Beth!) telling me about some items they had and a spring sale!!  In the last two weeks, I've been there twice purchasing containers to organize our stuff.  It has been loads of fun, reorganizing bedroom drawers, bathroom drawers, closets, and the pantry.
Here's a sample:

We've also been working on reorganizing the boys' (Conor and Garrett) bedroom, and choosing paint colors and window treatments for our kitchen and great room.  I guess we're finally settling in the new house and making it a home.
I will need to be careful, though...and see if I can:

No Guarantees

Today, I got the phone call that I've been dreading.  I knew it was coming, just had a feeling, especially after the first phone call a few weeks ago from our home health agency (excerpt)

HHA: We have a few questions for you from your insurance company.
Me: Okay
HHA: Does the child go to school?
Me: Do I have to answer that?
HHA: Well....(long pause...I don't think he knew how to answer)
Me: 2 1/2 hours a day 3 days a week
HHA:  Does the private duty nurse attend school with him?
Me: Yes (in my mind, I'm thinking, "uh-oh" here we go, we're going to lose our nursing hours)..and the conversation went on a few more minutes. 

So, today I got the call from the home health agency that our insurance is inquiring into our nursing hours, and wants copies of all the nursing notes.  The doctor at insurance wants to know about Toby's apnea.  How long do his episodes last?  What is his oxygen during the apnea?  Both of those are actually really stupid questions - if the doctor had any clue, he wouldn't ask those questions.  Toby's on a ventilator for his apnea, so when he's sleeping, the apnea doesn't occur - and his oxygen doesn't drop...because the ventilator is breathing for him 12 bpm. 
Anyway, they are starting to question whether they should be covering our hours, especially when Toby goes to school.  Right now our private duty nurse goes to school with Toby because he has skilled nursing needs, i.e. a trach, suctioning, and a ventilator.  If the trach falls out and somone isn't there, he could die. I'm wondering if they are questioning the nurse going to school with him because it's supposed to be "HOMECARE" (I guess that means Toby never leaves home, even for doctor's appointments). We currently have approval through the end of April. 
For the last 4 years, our insurance has been covering most of Toby's nursing hours (not all); the rest are covered by the Ohio Home Care Waiver (Medicaid Waivers).  I should clarify that if insurance stops paying waiver should pick up those hours (hopefully), so I'm not fearful of that, but this is what I am fearful of:
In the past two years, they passed new regulations.  When a child on the waiver goes to school,  the school has to cover the hours (because the school is allowed to bill Medicaid, and it's considered double dipping).  Sorry, if it is confusing (I don't understand it all either).  So our nurse, the one we know and that is trained for Toby might not be able to school with him.
Bottom line - I'm not letting my child with a trach get on a bus by himself - with no nurse.  Sorry, I'm not sending him to school when a nurse isn't close by if something happens.  Most school nurses have no idea how to suction or put a trach back in, and usually rotate between buildings, so this could be very dangerous for Toby.
I know that it sounds like I'm looking at the glass half-empty; I'm assuming that insurance stops paying, that waiver says we can't send our nurse to school with Toby, but all of the above could happen, and I just don't like the fact that we are headed down that road - that insurance is questioning...it's what I've been dreading.

After the phone call with the HHA, I began making dinner and had this conversation with the Lord.

Me: Lord, what are we going to do?  
God: Trust me...
Me: But we might not know until April if we lose these nursing hours and if things will change, how can I stand the next two months with things so unsettled?
God: Trust me
Me:  I don't like it when things are so unsettled, when there are no guarantees.
God:  There aren't any guarantees, Carrie - but I ask you to trust me
Me:  No guarantees?  But, I'm NOT comfortable with no guarantees; I need things perfectly planned out.
God: I didn't call you to a life of comfort and things under your control - I called you to trust and walk by faith, to let me be in control...Will you trust me?
Me: Yes, I'll trust you
God: By the way, there are some guarantees...
Me: There are?
God: Yes, did you forget?  My love is guaranteed; Heaven is guaranteed; I have a perfect plan, I work everything together for good to them who love God; I love Toby more than you love him; I have your best interest in mind; My promises are guaranteed; I am faithful, I will be here for you - even if you feel like the bottom is falling out, or when things change(I know how well you do with change...) Will you trust me?
Me:  Yes, I will...I'm going to try to daily put this at your feet and wait (which I'm not very good at)..trusting...you'll help me, Lord, won't you?
God: Yes, because I guarantee I love you and I guarantee I'm always trustworthy.

So, pray - pray that God will work something out; the doctors will see that we still need these nursing hours, but more than that - that I will continue to trust in the middle of uncertain circumstances.

God's Comfort

First of all, thank you for your comforting words and prayers over us last week.  After a few days of thinking, praying, and talking to a friend, I realized that some of my grief came from comparing Toby to other kids with Spina Bifida.  Wondering why on top of having Spina Bifida, Toby got the extra stuff - like a trach, ventilator, and g-tube.  This is going to sound silly, but sometimes, I wish Toby had "normal" Spina Bifida like other kids...without the extra medical/health issues.  BUT, I also know that God has used this in special ways - my friend Erika and I have been able to really walk in each other's shoes (and if you don't know that amazing God story, I'll have to tell you it sometime).  We have an incredible support group of medically fragile kids, and I have been blessed to have wonderful mom friends not only in the Spina Bifida world, but also in the world of respiratory stuff...and it truly has been a blessing.

So on to what I really wanted to blog about.  God's comfort.  I am always amazed at God's perfect timing.  This week I finally got off the waiting list to join BSF (Bible Study Fellowship) in studying the book of Isaiah..and since I'm coming in to the study toward the end, I got to skip chapters 1-39 (talking about judgment), and came in to the second half of the book - talking about God's comfort. (yay!)  I felt like an emotional wreck on Thursday, just tearing up as others in my group were speaking about God's comfort.  One lady (also handed me a tissue) said she looked up a definition of comfort and it said that it does not necessarily speak of difficulties being removed in our lives, but having the strength (from God) to bear them. 

God's comfort is very special to me because we have experienced it in a very personal way.  He has given us the strength to walk through some rough stuff.  I vividly remember looking at my 6 lb. baby boy in the Pediatric Intensive Care Unit - hooked up to a CPAP machine, PICC line, and heart monitors - watching his respirations go down to 8 (barely breathing on his own)...and knowing that God was there, holding me in my darkest of hours.  Here is a verse from Isaiah 40:11 "He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."  I know that personal touch of His arms carrying me through the grieving moments, the tough reality checks, the realization that surgeries are "normal" for us.  I have learned that God can take it - He wants to hear from me about all my emotions, fears, rantings, and ravings, but in the end trust Him for everything - and accept His love, care, grace, and mercy to live this special needs life relying only on HIM!

One of the points that the study made this week was, are you sharing God's comfort with others? I hope that I am. I pray that as God has brought me up out of the pit and clay, and set my feet on a rock, given me a new song, that "Many will see and will trust in the LORD." (Psalm 40:1-3).  It's only because of Christ in me - knowing Him as my personal Savior, that we have the comfort from God - by His grace, we have strength to bear each day, have peace in the middle of storms, and not just to endure in the journey, but have true joy in it!

Tonight, I was reminded of God's comfort once again - He has answered my prayers. Toby can talk, he can even sing. (see video). Just two years ago, he could barely make a noise. I remember watching the silent cries of my newborn - seeing it, but not hearing it..and praying so hard that he would learn to talk...and here we are. One of Toby's favorite things to do as of late is to sing while Grandpa (or myself) play the piano.  I wanted to share this blessing with you:

Yes, Jesus Loves Me..Yes Jesus Loves Me..Yes Jesus Loves Me - The Bible Tells Me So!

This Disability Has Me Down

It's been a rough week - I really wanted to entitle this entry as "Spina Bifida is Kicking my Butt"...but if the kids read this, they will reprimand me for using "potty words"!! :) Monday, it started with a problem that I noticed while looking through our EOB's (Explanation of Benefits) on our insurance web-site. If you really want to put yourself in a foul mood - look through your insurance claims! I am a fix-it type, don't like to have any loose ends, and so I spent two days trying to figure out why Medicaid is billing our Insurance for services they should be covering. It was enough to make me go insane, have stressed filled shoulders, and in the end, it's not really resolved, but I do understand a bit better what is going on. I will say that contrary to what most have experienced in the past, I spoke with a nice lady at Medicaid - she treated me like a human being, and explained things the best she could. I will also say that those reps can't even look at Medicaid billing statements, though, it's like Fort Knox. They told me that there's only one person in the office that can see who Medicaid has billed and how much they have paid out. His name is "Tommy". The situation is complicated, and we have decided to let sleeping dogs lie, especially since I think that all is right, but it was enough to make me nuts.


Then, Toby has just been challenging of late. He doesn't want to obey the nurses, and fights them on everything - from brushing his teeth, to when they do trach care, to whatever care they have to give him. I don't know how to handle this. I feel like the "husband" constantly having to back up the nurse and tell Toby to obey, cooperate, and do what she says. We've tried time-outs, spanking, privileges lossed, etc. (and while I'm on the subject - how do you spank a child who's butt is numb and can't feel it!)...Discipline is tough with Toby; I'm praying hard for wisdom to know how to get a hold of his heart, to mold and shape it to want to obey those in authority over him. I feel at a loss to know how - the methods we used with the other kids don't work...so we start at the drawing board once again.

This morning was the icing on the cake. Every morning (just about) Toby eats a pureed breakfast with waffles, bananas, vanilla yogurt, and milk. Most mornings we have to hound him to eat it, and this morning was no different. I don't know what I'm doing wrong - it's pureed, it's not lumpy, doesn't have chunks, why won't he eat it? The OT encourages me that it's a LONG road to getting Toby to eat/chew solid foods (don't we know that already), and that he's already made significant progress, be patient. I'm wondering if we should just give up, go back to all tube feeds, and be done. I tried discipline this morning to get Toby to eat, I tried ignoring him. Maybe if he didn't see/know how important it is to me (so we don't have to bolus formula through his tube) he would eat. Neither worked..I had to leave it to the nurse to deal with so I could get Conor and Garrett to school.

The icing on the cake was the pharmacist gently reminding me that his liquid solution of omeprazole is a compound, and CVS' policy is that it takes 24 hours for a compound to be made up. She wasn't overly nasty to me, but in that broken down place I was already in, it sent me over the edge and I cried all the way home...it's one of those weeks - special needs' sucks sometimes.

I don't want to leave you with a downer, so I want to share about some encouragement that has been picking me up. Toby received the new Newsboys CD for Christmas "Born Again", and several have been encouraging. Here are a few lines from some of the songs: (titles of song underlined)

Build us Back - "We've been crumbled we've been crushed, the city walls have turned to dust. Broken hands and blistered feet, we walk for miles to find relief. When the thief takes, when our hopes cave, you build us back, you build us back. Though the moutains be shaken, the hills be removed, your unfailing love remains. After all that's been taken, your promise still sacred, you build us back with precious stones."


Running to You- "When everything is broken, there's a door wide open, you'll find me running through, more than just emotion, my broken heart has chosen. Jesus, I'm running to you"


Our Your Knees - "When your heart breaks He'll hurt for you, dreams are out of reach, He'll pull you through. When you lose hope all you gotta do is get on your knees again. Not long now and you're gonna see, no mountain's too high for your or for me, or fall too far if you can believe, and get on your knees again....When you think about giving up, get on your knees"

These last few days, I've been stuck in a valley.  It's been another time of grieving, grieving dreams lost, grieving for a life that was supposed to be normal and predictable - with a child that could eat normal, talk, walk, run, and play - living in a world not made for a kid in a wheelchair...but God is there - He beckons me to my knees to lay it at His feet once again and experience the miracle of His mercy and grace.

Our Complete Family

Toby just loves Caris.  He is a proud big brother and always wants to hold her, which he rarely gets to do because she's always on the move crawling everywhere!  On a rare moment on Christmas day while visiting my parents, I was able to snap these photos: 

When Bruce and I were planning our family, we had always talked about having three or four kids.  After we had Toby, he was definitely done with three. I never quite had a peace about it.  As morbid or as cynical as it may sound (in my "planning" mode), I was concerned that if we ever quit with three and something happened to Toby, we would only have two children left (and obviously I know there is no guarantee with our other kids too).  It may sound silly to think such a thing, but for us, I felt in our old and gray years, we would wish we had more.
Anyway, all that to say that God had a new and better plan.  Caris was not a planned pregnancy, but she has been the biggest blessing.  When I was pregnant with her, I was truly fearful of how Toby would react to her.  Whenever any little baby, crawler or toddler would come near him, he would scream and cry...NOT quite the reaction we wanted him to have with his new brother or sister.  We did not find out the gender of the baby, because even though Bruce and I are mega-planners, we like the surprise.  I truly had a feeling about this one, my pregnancy had just a few differences - not HUGE differences, but little subtle things that didn't happen with any of the other pregnancies.
When Caris was born, he just loved her - and has always loved her.  I think God knew that he needed to be a "big brother" and I know that as Caris gets older, she will "mother" Toby too.  Caris has been a HUGE blessing to our family.  She is the happiest baby ever, easy going, but also silly - with a fun sense of humor.  I have truly enjoyed all the little things about having a normal, healthy newborn, infant, and now crawler.  Simple things like zip up jammies, hearing her talk, watching her cruise across the floor - things I didn't appreciate as much as I should have with Conor and Garret, and didn't experience with Toby.  God has given me a second chance to really truly enjoy every stage.  And the day Toby met Caris, he was in love at first sight.  I am so glad that God's plans are not my own, and that He chose to bless us with baby Caris (who is one next Friday!!), the perfect completion to our family.