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Wednesday, June 30, 2010

Mikey's DOC Band Journey Begins

Despite severe torticollis and upper-body weakness and asymmetry (to the extent that he refused breastfeeding), Mikey had a perfectly round head until four months old. Around two months old, we started with positioning, stretching and chiropractic care. He always took two steps forward and one step back. When he stopped taking steps forward, around three months, we started craniosacral therapy. Again, two forward, one back, until there were no more forward, around four months. Shortly after we stopped CST, he developed a little flatness on the left.

We tried homeopathy next, mostly for overall wellness, but soon after our evaluation with the naturopath, we discovered that he was, in fact, aspirating, as I'd suspected since he was a month old. We discontinued the homeopathy when his feeding tube was put it. Somewhere between four and five months, his head suddenly bulged out to the right. It happened over about a two-week period. We finally asked for a referral to physical therapy.

We had our PT evaluation at the end of April, just shy of six months old. By this time, the plagiocephaly was pretty severe. The PT showed us more exercises and stretches that we could do through the month of May while we couldn't do PT because Mikey was having surgery to take down the vascular ring causing his aspiration.

June 1st we had our final appointment with the surgeon, since Mikey was healing perfectly. (Check that off the list!) Then we went to our first official PT appointment, where she told us his improvement was so slight that we should get a helmet. (Add that to the list.) This was the first time anyone said "helmet" to us. I left that appointment crying, refusing to take the information. I had a number of reasons to be upset. The biggest reason was because of everything we'd been through to this point; this was just ANOTHER brick in this unending yellow brick road, and we still couldn't see the emerald city.

I realized that we had been doing everything right, and we were quickly losing time, since he was now seven months old, so this is our only option. So we had our pediatrician-required appointment with the craniofacial surgeon to get their blessing. Then we waited and waited. I finally contacted Cranial Technologies (the company contracted with my insurance) to schedule the evaluation myself. I'm glad I did, since there was a wait to get in.

We had our evaluation yesterday, and they said that he was a great candidate, and he should be a lot worse, based on his history. They said that while his expected timeframe is 3-4 months, he could be done sooner. Here's hoping! I'm optimistic since he improved even more this month, just with positioning and PT.

We should have his imaging appiontment very soon, and we'll get the helmet two weeks after that.

Friday, June 25, 2010

Should I JUST be glad?

A few days ago, a couple of well-meaning people on the Internet implied that I should not pray for a better situation for my son and me because I should just be glad for every minute I have with him.  Their posts were in response to my recount of what I wish could be different with Mikey's health.  I was illustrating to someone else that we all have troubles but we can be faithful and praise God in the midst of them.  The first person replied to me that I should just be glad I have a child because some people were never blessed with a children for whatever reason. It is possible that they were trying to encourage me, but they were still discouraging me from asking for more. In my experience, if we ask, God delivers in one way or another.  Both people said to just love him while I have him. The latter added that it will heal my heart. Um...I was praising God, people!

I received some supportive and much more coherent responses than mine from my friends:

"You just keep on praying expectantly, Katie......people really just don't get it when they say just be grateful. You shouldn't just be grateful that you have a job where you go and be miserable all day, you shouldn't just be grateful you have a husband or wife if they are abusive, you should not have to just be grateful that you have a child (they deserve to be healthy too), you should never just be grateful for anything less than you deserve, because God loves us enough to give us more if we ask, and if it is in line with his plan.......God never wants us to just settle. It is important to realize that we should learn to be content wherever we are, but the health of a child is NEVER too much to pray for. IMHO, of course."
~ Don

"As I recall, Matthew 7:7 says, "Ask, and you shall receive." I do not remember a qualification on that: "Ask, and you shall receive--as long as you are not asking for too much/as long as it doesn't make other people feel bad for what they don't have/as long as you don't ask too often." Really, the only restriction I can think of is that your request should give glory to God. So, since, as far as I can tell, Mikey's health can be a testament to the power of God, pray away!

And you know, you can be thankful for what [you have] and still pray for more. Of course you appreciate the fact that you have been blessed with two children; does that mean you shouldn't pray for or have more? Of course people are grateful to have a job; does that mean they should never try for a promotion or a raise? It's absurd to think that prayers for improvement and appreciation for your current blessings are mutually exclusive."
~ Jen

I never used to pray for anything specific.  I'd pray generically for blessings and protection for my loved ones; I'd pray for simple things, like a good night's sleep or safe travels.  I felt uncomfortable asking for specific blessings, like healing, because if that wasn't God's plan, I was asking for what I wanted and not what He wanted, and that's not what you're supposed to do.  At some point, I started to pray more specifically if I could rationalize the situation: healing could mean recovering from sickness or death, since we are completely restored at death.  With this in mind, praying for healing was a more active prayer than "take care of them" but didn't point God in any specific direction.

I once knew a woman who prayed to God for a husband.  She prayed for all the specifics, from height to eyewear, except for kids (she told God He only knew what she could handle).  God delivered EXACTLY the man she pictured in her head, a man she'd never met until AFTER she prayed that prayer.  I thought she was insane, but her story planted a seed that would wait until the right moment to sprout.

The idea of praying specifically surfaced again and again for years before I started to feel right about it in my heart.  It occurred to me that many times throughout the Bible, God told His people to do something specific before He would deliver their request or blessing.  One example is Joshua chapter 6, the Battle of Jericho, where the army and priests had to march around the city seven times before it would be delivered into their hands.  Additionally, God instructs us to ask:

"Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete."

I figured that sometimes God acts based on our requests, even though He has a plan.  (This is where my head spins off thinking about how God probably makes His plan based on the decisions He knows we're going to make because He is both all knowing and all powerful and knows the end before we even have the chance to exercise our free will that He will then react to...)

So I decided to try making specific petitions to the Lord.  I prayed for healing for loved ones.  I prayed for answers to tough situations.  I prayed for specific events to come to pass.  Some of my requests were answered directly, some were not (though I'm sure God answered them in some form).  With each small exercise of this new type of faith, that very faith grew stronger, like a muscle.

Some months went by and we found ourselves neck deep in Mikey's health issues.  At this point, I'd found peace in my current situation.  I'd found hope for many of our problems just by praising God.  All our issues has come together to the most difficult intersection yet: Mikey's surgery.  Every day I imagined a perfect surgery and recover, and every night I prayed for healing.  One night, it occurred to me to imagine that perfect scenario as my prayer.  I did, and, as expected, God delivered.  I exercised that expectant-faith muscle again over the next few days.  I recounted that week of faith in a previous post.

Time and again, God has urged me to put more weight on my expectant-faith muscle, and He's put me in touch with others who pray expectantly, a facebook page called "I Expect God to Act!!"  Interestingly, it was in this facebook page that I encountered the two people who inspired this post.  Here was my post:

"I'm wondering why God won't make my son breastfeed or at least give me enough milk to pump. I also wonder why my son's had major surgery at 6mo, a feeding tube, physical therapy and now a helmet. I just pray and trust He has His reasons."

God knows I still struggle, but He knows I have great faith and that all I need is a little patience, as He reminded me recently.  Having patience and praying for improvement aren't mutually exclusive, to borrow Jen's logic.

Well, I apologize for being all over with this post, but it's a complex idea, being content and still praying for more.

Thursday, June 24, 2010

Review: Busy Mom's Bible

A while back I teased you with news of an upcoming review of the Busy Mom's Bible.  Well, I got distracted and left you hanging.  Tonight I finally sat myself down and punched out a short-but-sweet review here.

I have three complaints about the Busy Mom's Bible:
  • Pronouns for God aren't capitalized.
  • Studies are more like "read this verse and think about it" than arranged studies, but I'm biased because I've been doing more in-depth studies for years.
  • There aren't enough time out lessons!  :o)
The translation is the New International Version (NIV), which basically means it's reputable and easy to read.  I used to believe it was cheating to read a Bible without all the thees and thous.  (I have since learned I wasn't alone in that belief.)  I have an NIV study Bible (thank you, Crystal!) that I've been using for years, and I've grown fond of the translation.  My favorite translations are the New Revised Standard Version (NRSV) for all the thees and thous (I do love the poetry of that language), the American Standard Version (ASV) and the English Standard Version (ESV).  The latter two are purer translations.  Nevertheless, the NIV is a solid Bible.

All that said, I am so blessed to have this Bible in my life! In case you haven't noticed, God uses this Bible to teach me some very valuable lessons. I don't pick it up nearly as often as I should, but I never read a lesson without God taking a large hand upside my head, figuratively speaking, of course.  The lessons speak to me on a very personal level.  I also love the takeaway word or phrase on which I can meditate the rest of the day (or week!).

I highly recommend this Bible for any busy woman, mother or not.

If you'd like to read another review of the Busy Mom's Bible, please visit Jen's blog.

Wednesday, June 23, 2010

Wednesday's Reading Day Giveaway at Coupon Geek

Anyone who knows me knows I am obsessed with books, for me and for my kids.  I am very excited to see any book giveaway, but most excited when the giveaway is for children's books!  Coupon Geek is hosting a children's book giveaway this week.  You may enter through Friday.  Find the giveaway here.

While we're on the topic of children's books, I'd love to hear about your favorites.  Please leave me a comment!

Friday, June 18, 2010

Mikey (Quick) Update 6/18/10

Mikey is still struggling to overcome his upper-body weakness and head tilt. We have started the process of getting him a DOC Band (cranial helmet) for his Brachycephaly with Plagiocephaly (bulging and flatness of the head). He is doing well with oral feeding and no longer requires a feeding tube!

Monday, June 14, 2010

Like a child trusts a father

For a long time, I've had a desire to really explore our need to view God the way a child views a parent: all knowing, all powerful, forever loving, doing all for our good.  I believe the desire has come from listening to CDs of Bible songs in the car with Ellie, desiring to recapture the pure joy those songs brought me in - say - Vacation Bible School summer after summer.  I have had an image in my head of the pastor preaching about this need for childlike faith while all the songs during the service are Bible songs.  It's a silly little daydream, but the idea captivates me more than I can say.

Yesterday I realized God has been telling me exactly what I want to badly for Mikey, my seven-month-old son to understand.  It stunned me a bit when that realization hit, like an electric shock.  I didn't think at the time, however, about my recent fascination with the child/parent/God analogy.  (Perhaps my fascination was created by God to better prepare me for understanding yesterday's lesson?)

Recently I experienced the outcome of childlike faith.  Let me share my accounts of those moments of faith here as I shared them on facebook:

A little moment of praise: I prayed for my son's surgery this past Tuesday, and God delivered the surgery and recovery EXACTLY as I had prayed for it, right down to how long the surgery took (which I prayed would be an hour, even though they told me 1.5-2 hours)! I've never prayed so specifically, and this experience just blows me away!

Another moment of praise: Twice this week I prayed "Jesus take the pain away," once for my son and once for a stranger in the ER, and both times they found relief in about two minutes! The best part? The stranger had NO IDEA I was praying for him; there was a curtain between us and I wasn't saying anything out loud!

Tonight I am in the position of forcibly staying awake to wait for my next pumping session (since sleeping for 30 minutes and expecting to wake up and get out of bed is unreasonable for me).  I sat down at my computer and had to wake it up.  I felt the urge to do another time out lesson while I waited.  I figured I should read the lesson I skipped yesterday.  The lesson is entitled "Heavenly Father."  The scripture verse is Mark 10:15-16:

"I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." And he took the children in his arms, put his hands on them and blessed them."

The lesson goes on to talk about how we lose our childlike faith, but God can help us get it back.  I think God timed this lesson so that I would be able to reflect on my own process of getting back my childlike faith over the last few months.  I admit I do feel a touch nostalgic recounting all of this, like wrapping up a long-worked-on project.  But I know that I'm not done with this.  I know I have to keep working on my childlike faith by fully giving to God everyday in prayer and being open to receiving whatever blessings and answers he returns.

What can you give to God today?

Saturday, June 12, 2010

Powerful Sustainer

I had a major anxiety attack today.  I felt like I couldn't get enough oxygen, my heart was racing and pounding, and my skin was crawling.  It took me a long time to get it under control.  Once I was settled, I decided to give myself a mini facial to relax.  As I sat in my closet chair taking in the experience, God told me to pick up my Busy Mom's Bible and read one of the time out lessons.  I sensed He wanted me to open up to the last one I read and find the one I'm supposed to read.  The page that contained the next one in the series, should I consider print order to be a "series," also contained one entitled "Powerful Sustainer."  I knew instantly that one was the one He wanted me to read.

The scripture verse was Colossians 1:17:

"He is before all things, and in him all things hold together."

Part of the text of the lesson read,

"Are you going through a difficult situation in your life right now?  Are there circumstances you cannot understand?  Instead of trying to fix it or control it, rather than trying to figure out the what, when, where and why of your struggle, focus instead on God your sustainer.  Jesus, the friend who knows and cares for your every need, is also the Lord who directs the events of your life moment by moment - in love - to make you more like him."

Last night I prayed to God to help me turn everything over to Him.  There is a most distinct difference between doing this and doing it completely.  There is no question that I fully trust God.  I trust that He is all powerful, that He will get us through this and fix the things that need fixing, and that He does and allows all things for good.  Still, all week I've struggled with stress from still holding on to some part of our situation.  I asked God to help me turn it all over, since I obviously don't know how yet.  I fell asleep shortly after that, probably out of relief from turning that alone over to God.

I'd completely forgotten I'd prayed that prayer until I read this lesson this afternoon, and it came flooding back.  I just needed God to spell out for me each element of my worry, so that I may give it up to Him piece by piece.

Then the lesson instructed me to read Romans 8:28:

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

I heard God say, "Just be patient; you have to go through this."  And I remembered a thought I've had many times for Mikey: if only I could explain to him that this is all for good, and if he just relaxed and let it happen, it would all be over soon enough.  Sometimes I'd even say it, somewhat frustrated that he just didn't get it (knowing full well that he couldn't possibly understand), and that made me realize that God is saying the same thing to me, and I'm just not understanding.  I'm still a child of God; there are things I can't understand, but I am, by the grace of God, mature enough to trust God and let it happen.

So He's telling me, and I'm listening...and now I understand.

Friday, June 11, 2010

Mikey Update 6/11/10 and Trusting God

This will be brief because I'm exhausted in every way one can be exhausted, but I haven't had a nervous breakdown, as one might from the prolonged stress in this seemingly unending stream of medical events.  So that's Me: 1 Stress: 0.

Mikey is 3.5 weeks past his surgery.  He is healing great and has no side effects, like decreased range of motion or infection.  Speaking about motion, however, he is still battling his prenatal musculoskeletal issues.  Although he is getting stronger little by very little, he still has considerably decreased range of motion in his neck and severe upper-body weakness.  The physical therapy isn't working, though the home exercises are helping the very little I just mentioned.  I think we need to find a new approach for the physical therapy, since he screams bloody murder the moment the therapist touches him.  (It's definitely not her; she's wonderful.)

He had his feeding evaluation this week.  I'll jump ahead to the after-effects of being given the all clear to feed him by mouth.  He took a few sips of milk at the appointment, then an eighth of an ounce that afternoon, a quarter of an ounce that evening, have an ounce a half hour later and an ounce before bed.  There were a number of other smaller feedings before and after the bedtime meal, too.  At some point yesterday, he threw up (a lovey side effect of seasonal-allergy snot production), sending his NG tube shooting out his nose.  I decided not to put a new one in and see what happens.  The feeds got bigger and bigger, including one four-ounce feed (though he took an hour and a half to do it), so we left it out overnight.  Well, as before the NG tube, Mikey woke up only once to eat last night, and my attempt to wake him up to eat another time was met by a small snack, far less than he needed.  I tried today to get him to eat enough, but he was still short, so we put the tube back in tonight, which broke my heart.  Still, maybe Sunday on my birthday we can take it out.  Positive thoughts!

Here's the trusting-God part.  I'd been stressing about the evaluation since the barium swallow two weeks ago.  Speech pathologists are notorious for being pushy and breastfeeding hostile.  Additionally, I discovered that the SP from the swallow, who'd been so wrong in so many ways, including refusing to give us the all clear to eat, was a possibility for our evaluation.  I stressed all the way up until the drive from work, where I left Ellie with Dad, to the hospital.  A peace came over me as I told myself that God will give us the exact therapist we need.  Period.  As we waited past our appointment time to meet our mystery therapist, the SP from the swallow peeked her head in and waved hi, though I must admit she looked a little put off seeing me.  I immediately tensed from her presence, but then she disappeared... only to reappear at the other door to usher us into her office.  I plastered a smile on my face and followed her instructions, stiff as a board, braced for a fight.  Suddenly, however, she started talking about getting Mikey breastfeeding.  I was stunned.

As the conversation went on, she insinuated that I knew Mikey best and what was best for him.  She also told me repeatedly that she was impressed with work I'd been doing with him at home, that I have a good gut and a good read on my child.  Toward the end of the appointment, she asked me what my background was, since I knew so much about child development.  That is just about the biggest compliment I've ever received, since I have no background beyond my own children and what I've picked up from professionals around me, like my mom, the chiropractor (the wonderful Dr. Ross) and the lactation consultant (Go, Debbie!).

As the conversation went on and on, an hour past the end of our appointment, I learned that she desired to become a lactation consultant and she had a lot of field experience with lactation and breastfeeding.  We also talked about the SP stereotype of being breastfeeding hostile and self important, among other negative qualities.  I realized that whatever had gotten between us at the swallow had dissolved rapidly, and now we were talking like friends.  I had a flash back to my God Breeze, as Flylady calls it, that God would provide the exact SP we needed.

Finally, we have a new issue at hand that most of you know nothing about.  I apologize for telling you in this medium, but it's just easiest to have all the information laid out so that perhaps it comes across more clearly.  Around four months of age, Mikey went from having an unusually-perfectly round head to having a flat spot suddenly accompanied by a bulge out to one side on the back of his head.  We'd already been practicing postioning and stretching, so this was doubly a shock: first because of how rapidly it appeared and second because he was no longer favoring the flat side so much as to make it flat like that!  Well, we buckled down even tighter on the positioning and stretching, and at five months we got the referral to physical therapy.  He was just shy of six months old at the time of our evaluation.  Since the surgery was coming up, the therapist told us to keep up with what we were doing until we started a regular regimen in June.

Our first official therapy appointment, at seven months old, within an hour of being told that we were completely done with the surgeon (check one thing off the list), revealed a recommendation for a helmet, called a DOC Band (add another thing to the list).  I refused to take the information and left that appointment crying out of frustration.  She had told me that positioning rarely helps, especially not after six months of age, and that the DOC Band takes longer to work after six months of age.  I was upset that she hadn't brought it up a month earlier, though she later explained that she originally thought the positioning, et al, would have been more effective.  For the record, we did see a slight improvement in his head shape over the month.  Still, she thinks the DOC Band will be effective, and the feeding therapist thinks it might help with the assymetry in his face that attributed to his refusal of the breast at birth.

So, here we are: physical therapy, cardiology, craniofacial surgery (no, he's not getting surgery; the prescribing doctors just happen to be surgeons), feeding therapy... I think I got it all.  For those of you praying for us, please keep in prayer the following issues: Mikey learning to eat properly, specifically the use of his tongue; Mikey going back (or finally going) to the breast; his neck and back stretching and strengthening appropriately, especially so that he gets back on track developmentally; The VSD (hole in his heart) closing on its own, as the doctors think it should; and effectiveness of the DOC Band.  Oh, and please throw in one for his allergies.  We tried meds, and they didn't make a dent.  Stupid pollen...