Saturday, June 29, 2013

Neuropsych and King

Weird title, I know, but you'll see once you read on. 
As part of the cochlear implant process, James needed to have a neuropsych evaluation.  Don't ask me why, I have no idea.  But the audiologist told me that the nice folks from that office would be in touch with me to schedule.  Well, more than a month later, still no call.  Emailed Dr. Kate and she said she contacted them again and they assured her they would contact me soon.  I asked if she had a number, I would just call myself.  She said, no, they have to call you.  Two or three weeks after that, I got fed up with waiting and decided to call them anyway, whether they liked it or not.  I talked to three different receptionists before finally getting the one who could set up the appointment.  This was on Monday, the 24th.  She told me that the earliest appointment available was September 19th!!!!  But if there was a cancellation, she would call me.  Well, needless to say, I was less than pleased.  Besides the fact that it was almost 3 months away, we really wanted to get him in before our insurance ran out (Jason got a new job that he starts next week, and benefits don't kick in for 90 days, and we still had not been approved for medicaid.).  I didn't want to risk them calling sometime in the next three months and having to pay for the eval ourselves.  I'm sure it's not cheap!  Anyway, I prayed that God's will would be done in this whole situation and tried not to obsess about it.  Well, I guess God thought it was too long too, because on Wednesday morning we got a call saying there was a cancellation for Thursday, and did I want it?  Um...yes!!!  So Thursday morning Toothless and I headed to Children's, yet again, for this very important piece of the process.  First the doctor asked me a hundred questions about what James can and can't do, what he's like at home, etc.  Then she sat down with him and tested him for probably an hour!  He had to find objects in a scene, match pictures and shapes, find objects that went with each other, and I don't even know what else.  But he did, and I quote, "amazing!"  Both the doctor doing the testing, and a new doctor who was observing, were so impressed with him and his nonverbal abilities.  And again, that was so reassuring to me!  Like I said before, many times I'm not sure the boy has a brain in his head!  But he definitely does, and she feels he is an excellent implant candidate.  So now that everyone is on board, I'm really hoping that when we go to our follow-up appointment with the ENT on the 10th that he will let us get a surgery date put on the calendar.  James still has to have another hearing test sometime at the end of July, but we all know it's going to say the same thing as all the others.  He hears nothing, even with the hearing aids.  So I don't see any reason not to schedule, optimistically sometime in August.  But we'll see what Dr. Chi says.  And as far as the insurance concern, yesterday I got a call from a recording that turned out to be from Medicaid, saying that our enrollment packet is coming in the mail.  At first I had no idea what it was, since it was a recording, and never actually said the word medicaid or medical assistance.  Just Pennsylvania something-or-other.  But when it said we needed to choose a PCP and health plan, I got very excited!  It gave a website, so I checked it out and it was definitely medicaid.  So praise God, James will not go uninsured!  Which is a really good thing, first for the implant, and because he is now complaining about another tooth hurting!!!  This time a bottom molar, one that is mostly filling.  Thinking it will probably need to come out too, but after the last fiasco at the oral surgeon, I am not too excited about that prospect.  And since it's mostly filling, I don't know if he'll even be able to just pull it, or if it will require surgical removal like the other one.  The filling is still intact, at least, so that's good.  But it looks like we will be making another trip to our bow-tied oral surgeon.  Hip hip hooray.
Ok, if you're still reading, you're probably wondering what the "King" is all about in the title.  So I shall satisfy your curiosity now!  "King" by R.J. Larson is my most current free read from Bethany House.  It is the third and final book in a series, the first two being "Prophet" and "Judge."  Part action, part romance, part spiritual, The Books of the Infinite, as they are called, are a parallel to Old Testament times, with the Infinite being the One True God, and a host of pagan nations and false gods making trouble for the faithful followers of the Infinite.  These books are beautifully written, the characters well-rounded with depth and growth, and the plot is well layered without becoming bogged down.  The way the main characters interact with the Infinite make me want that kind of relationship with God.  Their devotion and obedience (and sometimes disobedience and subsequent forgiveness) is realistic and inspiring.  I highly recommend all three of these books, and I look forward to more from this author.

Tuesday, June 25, 2013

A Whole Bunch of Things

Well, this really should be about 3 or 4 different posts, but since I've been a slacker you'll have to read this one very long one instead!  And again, it will probably be a bit scattered.  It's been a rough week and a half.  While still dealing with an unpleasant surprise that left me reeling, the next day a man that used to go to our church and that was good friends with good friends of ours was killed in a work accident.  He left behind a wife and two young boys.  Whenever a dad dies, it brings back a lot of memories and emotions I don't prefer to think about.  And being right on the heels of the unpleasant surprise made it ten times worse.  But at the same time, it reminded me not to take people for granted, or to stay angry at someone you love.  You never know when that someone might be taken from you.  At the end of the week we found out that some very special friends lost their baby.  Completely heartbreaking, and so overwhelming, all this grief.  All I can do is pray, Jesus be near, which I have, over and over again.  Sometimes (okay, a lot of time) it's really hard to accept life.  I'd rather just scream "Why God?!?!  What are you doing?!?!?!"  And while I know I could do that, and God could handle it, it really wouldn't serve any purpose.  God doesn't owe me or anyone else an explanation, and even if he did explain, it's not likely that my pint-size brain would understand it anyway.  I just have to trust that God is still God, and his ways truly are higher than my ways, and his thoughts higher than my thoughts.  And no matter what happens, he is worthy of my praise, now and forevermore.
In the middle of all that, there have been some good points!  James finally started his therapies through the AIU.  He's had speech twice, and he has his second session with the deaf ed and special ed teachers on Friday.  All three ladies are great, and they love James.  They are very impressed with how well he is doing, which is very encouraging to me.  I can see that he is definitely making progress, and yet sometimes ... well, sometimes I think the child doesn't have a brain in his head!  But I guess I think that about my other two kiddos at times too, so it's probably not as big of a deal as I make it with him.  On Tuesday we finally got those troublesome top front teeth pulled.  It was a completely traumatic experience.  Apparently the boy hates needles, and it took quite a while, and a whole lot of screaming, to get him in a head lock of sorts so the doctor could get the novacaine in.  Once we got that done it was smooth sailing, and he is now "our little hillbilly" with only 3 top teeth.  Wednesday was Aedan's pinewood derby race at church.  He had a great time racing his car, and he did really well.  Thurdsday and Friday we went to the pool.  All three kids love to swim, and James had a blast.  He goes underwater just fine, and he would jump in if he was clutching my hand.  Mostly he played on the steps where it's the most shallow.  We did have an odd occurence with one of the lifeguards telling me that he didn't like the way James was putting his face in the water.  Still not sure why, but no one else has said anything about him.  And today I even got him to jump in without holding on to me.  He didn't do it willingly at first, but eventually he did and had quite a good time.  Over the weekend we had our last post placement visit with our social worker, Ernie.  Now just some more paperwork (big shocker) and James will officially be a Yusko!  We also had softball games and dinner at my parents' house.  It feels weird to not have any more appointments for a while, but nice.  And we still have plenty going on to keep us busy!

Aedan is trying to catch up to James in the lost teeth dept.




red. neck.




This month's family photo for the ICAB

dirtball #1

dirtball #2


My big girl!

Sunday, June 16, 2013

Some random thoughts on Father's Day

This post might be a little bit all over the place, so sorry in advance if it seems scattered.

My most recent free book from Bethany House was The Quarryman's Bride by Tracie Peterson.  TP is in my top three favorite authors for historical fiction, probably my top two even.  This book was no exception to her  top-notch story telling.  The main character Emmalyne has a tyrant for a father, and much of the story deals with their family dynamics and how having a less-than-loving father impacted her life.  Without giving things away, suffice it to say that the story offers hope to daughters who have been wounded by their fathers, that the Lord can heal and restore.  Nothing is too hard for God, and God's constant love and care even when we don't feel it are also main themes of the story.

Growing up, my dad was not exactly the demonstrative type when it came to love and affection.  Rarely did he offer complimentary or encouraging words, and he could be hard and sarcastic more often than not.  He also worked extremely hard, and didn't believe in days off or vacations.  I think that providing for us was his way of showing his love.  But it left me wanting, and by the time I was a teenager and into college, we had a pretty lousy relationship.  One time we had this major blowout fight, that was completely awful, but after that things started to improve.  I only had a few short years of having a really good relationship with my dad.  But it made such a huge difference, and when he died I had no doubts of his love for me.  It's been ten years now, and I still miss him like crazy.  I wish my kids could have known their Pappy Steve, and I always wonder what he would have been like with them.  But praise God, He brought a wonderful step-dad into my lif about 6 years ago, and I love him dearly.  He loves my kids, he is always willing to do anything he can to help us, even if it's not the most convenient for him.  And my kids love their Pappy Dan to pieces.  And he makes my mom happy, which is something my dad didn't do very well.
Thinking about all these things today has been hard, and then we got hit with this crazy spiritual attack that came out of nowhere.  We should never be surprised by such things, I guess, but I was not expecting this situation, and truly I have NO IDEA how it even happened.  Which has left me wondering about how much power the devil actually has over people.  I mean, I know that unless you are possessed, he can't force you to do things, but he can suggest them.  And people who aren't following the Lord likely have no reason not to act on those suggestions.  But the idea that people would willingly cause other people pain and trouble is always hard to swallow for me.  Or that they don't consider the impact their actions might have is just as troubling.  Either way, sin is an awful thing.  We realize it much more when something "big" happens that shows just how destructive sin is, but those "little" things are just as dangerous, maybe even more so.  In this morning's message we were admonished to not give the devil a foothold.  I keep saying that phrase over and over to myself now.  I don't want the devil to have even a pinch hold in me or my family, let alone space enough for his whole foot!  Pray for us, if you would, and guard yourself and your family well.

Thursday, June 13, 2013

Sweet Mercy, fact and fiction

Now, before you get all nervous, the fiction part is a book review, on Ann Tatlocks's novel, Sweet Mercy, which I received for free from Bethany House to read and review.   A departure from my preferred time period of historical fiction, this book was well written and kept me turning the pages from beginning to end.  Set during the era of Prohibition, Sweet Mercy offers a look at a troubled time in our nation's history, and how it affected so many people.  I found myself relating to the main character on many levels, in her struggle with self-righteousness and her adamant view that everything in life is either black or white, right or wrong.  This book raises thought-provoking questions about morality and ethics, and will challenge readers to consider what their own response might have been in that situation.  The characters are well developed and the story line moves along at a nice pace. 

Now for the facts.  You need mercy.  I need mercy.  Without the Lord's mercy, we would be utterly destroyed in a moment.  The Bible says that because of his mercies, "we are not consumed, for his compassions fail not."  Let me be real with you for a minute.  The last month+ has been rough.  Like, really rough.  And I can't even tell you why.  Yes, we had illnesses and surgeries and more illness and poison ivy, but nothing was so terrible in and of itself.  Maybe it was the culmination of it all, I don't know.  But I know that I felt consumed, and not in a good way.  Consumed by anger, by never-ending frustration, by this permeating heaviness that I couldn't seem to shake.  I begged God daily to help me, and repented nightly for all the times I failed each day.  And they were many, let me tell you!  I can't remember a time that I disliked myself more than the last 6 or so weeks.  But the Lord's mercies!!  How I would love to tell you that I had this supernatural encounter with the Holy Spirit in my prayer time, or even in church.  But it's not happening that way.  Instead, I see God's mercy in small things, in everyday things.  Just when I think I can't go one more day, one more minute, God's mercy is there.  Even when I don't feel helped, HE is helping me.  I know this because I am still here, my children are all in one piece, and my husband still loves me :)  Seriously, though, He must be helping me, and has sent very precious people to help me when I needed it most.  I'd also love to tell you that everyday is perfect, all rainbows and sunshine now, and that I never get angry or annoyed or frustrated, that I never yell or speak harshly to a member of my family.  But you'd know I was lying, so I won't bother!  But I will tell you that it's better than it was, and we can only go up from here! 

I really have no idea how many people actually read this blog, or who you are who are reading right now, but let me just say this: Whatever you are going through, however you are feeling, whatever wrong choices you have made today...mercy is there.  It is for you, the Lord is offering it freely.  Accept it, rejoice in it, and allow it to change you.  Praise the Lord, for his mercy endures forever.

Saturday, June 8, 2013

Just another week of crazy!

Someday, we will have a normal week!!  But it was not this week!  It started on Sunday, with James being brought up to us from Sunday school because his tooth was hurting.  By the time we got home he was all out crying (shrieking, really) about this tooth!  And James does NOT complain about pain or sickness, as a general rule (except for the stomach bug we had over Memorial Day!), so I knew it was really hurting.  He'd actually been complaining about it for a while, but I figured that it was the tooth he had removed that was causing the teeth beside it to hurt so I didn't pay much attention.  But it's been over two weeks since that surgery, so it wasn't that.  And since it was the weekend, there wasn't much to be done except give him some tylenol and wait until morning to call the dentist.  Which I did, and thankfully they had one appointment open Monday morning.  I had to leave work to take him, but it was that or nothing.  I was very afraid of an abscess or something that would require more extractions, but the x-ray showed nothing amiss.  So our good dentist took out the filling that was put in a while ago, numbed him up with some novacaine for the first time (he was not a fan), and drilled it out thoroughly.  Probably a good third of the tooth was drilled out and then refilled.  Unfortunately, as of today he is still crying about it every time I brush his teeth, and he won't bite or chew on that side.  So I will be calling Dr. Terry again Monday morning.  Poor boy could end up toothless on top by the time all is said and done!  The tooth in question is the front left tooth.  He only has that one and the one right beside it remaining on that side.  And only three teeth left on the right side, so he really can't afford to lose any more!  But we will see what the dentist says.
Tuesday we had tube surgery and accessory tragus removal.  Your tragus is that part of your ear you would push down if you were trying to plug your ears.  On the inside of James's left ear was a little growth that we could not get a hearing aid mold to fit.  So off it came, along with another little growth that was on the outside of his ear.  It wasn't really bothering anything, but we figured that while he was at it, the ENT might as well just take it off too.  James took forever to wake up, and then he got sick, probably from the change in pressure in his ears.  So they had to give him more meds and fluid, and we were at the hospital until after 7PM.  But by the time we got home he was himself again, and ate yogurt, peanut butter toast, and chicken and rice. 
Wednesday we trekked back to Children's for a hearing test that was scheduled quite a while ago, before I had to reschedule the tubes surgery.  And he seemed to be feeling fine, so off we went.  This test was to establish what, if any, residual hearing he has.  He did really well doing what he was supposed to do, and basically she said that he can hear super loud sounds at low frequencies.  Think airplane, jackhammer, etc.  But nothing really that you would hear in a normal day.  The left ear did test slightly better than the right, so once we can put that hearing aid in, he might get something, but probably only really loud sounds, not language or anything like that.  He has to wear both aids for about a month, then we'll go back for a test with them in, to see if they are doing anything for him.  He still has to have a neuro-psych evaluation, and I am still waiting for them to call me and schedule that.  Once that and the aided hearing test are done, a final decision will be made regarding implants.  But the ENT told me that as far as he is concerned, he's ready to do it now.  So I'm pretty sure we'll be a go once we jump through all the necessary hoops.
The rest of the week was actually pretty quiet, except for a running low-grade fever that the ENT nurse assured me was fine, twice :)  And today there was some blood in his right ear when I took his aid out to check his temp, but the ENT on-call said that was fine too. 
On top of all that, Liana seems to have inherited by allergic-to-poison-ivy gene, and broke out with it on her face on Monday.  I have some steroid cream on hand, and I slathered her in it all week and it's clearing up nicely.  I, on the other hand, keep finding new itchy spots on my arms, one on my neck, on both feet, and starting on my leg.  Mind you, I went nowhere near the poison ivy.  I have washed all our bedding, and I wear long pants and long sleeves all day.  And still it spreads.  Beause my body is awesome like that.  Definitely on my list of things to ask God is "What was the point of poison ivy??!!!!!"