Thursday, January 20, 2011
somehow or another ...
amidst party hats and cake ...
We had a fabulous party and he's very proud of himself, telling everyone that he is now FOUR.
Meanwhile, I think Emma is teething. She goes through times of being an unhappy Bear, but Tylenol really seems to help and the doc says her ears are fine, so we're gonna go with the explanation that she's teething ...
But she seeks more sensory input than usual (banging her heels on the floor, stuff like that) when she's uncomfortable, and we've found that the best sensory experience that helps a Princess in distress is a BATH.
She has really started absolutely LOVING bath time. Isn't she cute, that little little girl in that big tub? :)
But most of the time, she's doing just fine
vocalizing more and more every day, letting us know how she feels about things :)
And these next two videos showcase Emma's new skill. Now, I realize that seeing it two isolated times in two short videos isn't terribly exciting, but I swear to you, she really can do this!!
Yes, there are definitely times when she doesn't FEEL like doing it (can you say diva?)
But as long as we keep it novel, she'll play along until she finds something more interesting. She's done it a couple of times with cards from Charlie's Memory game, she'll do it with puzzles and she's done it for her Speech Pathologist a couple of times.
I'm pretty proud of both my kids!
Thursday, January 13, 2011
But that's not what this post is about.
Emma and Charlie both take afternoon naps, but Charlie is usually up before Emma is and gets a little Mommy time. This has not been the case since Emma's most recent health drama, however, and I've been wondering if the little man's "love tank" was starting to run on empty.
Today when he woke up I was changing an Emma diaper. He came out from his nap carrying Blankey and Bear and asked for some snuggles.
He hasn't really asked for snuggles like that in a long time ... he IS four now, you know! :)
I knelt down and gave him a hug, which is all he really wants lately, but today he asked if we could go and snuggle on the couch.
He said, "Mommy, I just need some of your attention today."
I decided not to make a big deal of it at the time, particularly since Emma was also needy and Josh was at a meeting tonight. So Charlie and Emma and I snuggled together and it was really nice.
Later, though, when I was tucking Charlie in, he absolutely blew me away with his emotional maturity.
He said, "Mommy, I had a good day with you. Can we talk about what we did today?"
We talked about all the things we had done. We had a lunch date with some friends and sang silly songs in the car and had pizza for dinner ...
Then he said, "Remember when I got up from my nap and said that I needed your attention?"
I said, "Yeah, buddy, tell me about that. Mommy is always here, why did you say you needed attention? I'm always here if you need something."
Pause. Then he said, "So ... tell me what the word 'attention' means."
"Well, it means that we talk together and do things together and give hugs and help each other ..."
"But Mommy, you know how you've been saying that sometimes you need to focus on Emma ..."
"You're right, buddy, Emma needs more help than you do"
I'm not sure if I did the right thing ... I said it was because she's little. I said it was because he's such a big boy who can do so many things and she's still little, and plus she has a lot of things that she needs a lot of help learning ... but I stopped short of the full answer ... did I do the right thing? WHERE IS MY PARENT INSTRUCTION MANUAL FOR THIS JOURNEY????
"But you know what, Charlie? I am SO proud of you that when you were feeling like you needed some Mommy time, you didn't cry, you didn't get upset, you just did a very grown up thing and used your words and told me that you needed me. Thank you"
I've said it before and I'll say it again: God absolutely knew what He was doing when he gave me Charlie.
Sunday, January 9, 2011
I've been feeling a little awkward about the last two posts on my blog. You know, the ones that ask for prayer about a procedure and then the one that reports that the procedure didn't even happen? Yeah, those.
I've been feeling weird because I want to convey my emotions about our last week correctly, and sometimes that's hard in blog form.
So first, let me say that YES! We were very frustrated about Emma's ears last week. We cried. We asked questions. We still have many questions. We prayed a lot and asked others to pray a lot about care for Emma's ears in the coming months.
I called Emma's ENT's office, and a nurse was able to read and explain her doctor's OR report to me. Her left ear canal was essentially filled with inflammatory tissue. He did not replace the ear tube in that ear, and I think it might be that he wants to see if the problem is that her ears are attacking the tubes with this granulated tissue.
We have another ABR scheduled in two weeks and then we will meet with her doc again and see what he says about the report and care for Emma's ears going forward. We expect that the report that said that her hearing had gotten worse was actually correct because of the tissue building in her canal.
But I want you to understand something very important to me; God is moved by prayer. He may not move in the way that we think He will, but there is no curve ball that He is not anticipating.
So I wanted to make sure I share the ways that God moved as a result of prayers that you didn't even know to pray :)
1) I truly believe that Emma was headed for another bout of facial paralysis, this time on the opposite side, and I believe that this 'unexpected' surgery saved her from it. The tissue in her ears would have continued to build up, which is what caused the right side of her face to be paralyzed last May. God knew that, and he used this doctor's appointment to address the issue.
2) The fact that the day could not have gone smoother causes me to praise the God who holds all our days in His hand. Emma was already fasting in preparation for sedation with the hearing test, so she was prepared for surgery.
3) The doctor had an open schedule that afternoon, and then a meeting at 6, so he was at the hospital anyway and more than willing to take an impromptu trip to the OR.
4) Emma's doctor left for a medical missions trip this week, so if the situation had been left to build to it's inevitable ER-visit-inducing conclusion, he would not have been there and his partners (who round in the Children's Hospital ER that we would have taken her to) would have been very busy, so this timing was perfect.
5) The OR was able to get us in within the hour, even though ear tube replacement is probably not generally considered to be emergency surgery.
6) Charlie was already at my mothers, and Josh was able to come and be there.
7) Emma recovered from the surgery BEAUTIFULLY! We went to church that night!
So while these are not outrageous, spectacular miracles, I do see them as God's hand.
God is here.
His job is never to be our genie up in the sky, giving us what we want, but I would much rather worship a God who knows better than I do what's best for me. If He were small enough that I understood His plans for me, he wouldn't be as worthy as He is of all my worship and devotion.
I am His child.
And so is Emma.
So I'll thank Him for the way He answers our prayers and rest in His gentle care for us.
Because, as Charlie has been singing all week,
My God is so BIG
So strong and so mighty
There's nothing my God cannot do.
The mountains are His
The rivers are His
The stars are His handiwork, too.
My God is so big,
So strong and so mighty,
There's nothing my God cannot do.
Thank you, dear friends, for your prayers
Wednesday, January 5, 2011
Ok, well, as usual, we scheduled an appointment with Emma's ear doc (ENT) today before her hearing test to make sure her tubes were open and functioning and confirm that her ear infection had cleared up so that we would be confident in the results of her hearing test.
She did not have a hearing test today.
Instead, we went to the OR.
Her ENT saw something strange in her left ear - so (miracle of miracles!) he was able to take some time in his afternoon schedule and was able to get a room in the OR to go in and see what was going on. Praise God for no waiting.
Emma's ear tube had, once again, been over-grown by granulation tissue. He was able to get the tube out, but he said that he didn't even bother replacing it because there is so much tissue even behind the ear drum.
I don't understand
It's the same thing as the facial paralysis explanation, I think, just in the OTHER ear.
So we're back to ear drops, but he called this a "long term problem"
I don't understand the problem, and I REALLY don't understand the possible solutions.
Mothers should NOT be expected to retain information given to them in a post-op setting. And my poor husband relies on MY recap of the conversation with the doctor ... but believe me, when the worst case scenario includes the word "deaf," I'm fairly certain I didn't hear any thing else in the conversation accurately.
I'm going to call his office tomorrow and ask for his written report summarizing his findings.
I'll update more when I understand more.
But for now, Emma is just fine, resting comfortably, not really understanding what all the fuss is about. She just got a good nap in this afternoon! :)
Tuesday, January 4, 2011
To be honest, I've never really bought in to the whole "fresh start" of a new year before. It seems silly on both sides of it; any given Monday could be a fresh start, why don't we make "new week's resolutions?" And on the flip side, I really am no different on 1/1 than I was on 12/31, so why do we believe that our resolutions will hold any weight this time around?
So call me a hypocrite when I say that I have a goal for myself for the next couple of months ... :)
I'm going to try to memorize the book of Philippians. I have always found that when I commit Scripture to memory that it takes root in my heart in a different way than if I just read everyday. God has gifted me with a mind for memorizing (ask me sometime and I can tell you what my dad's credit card number was in 1987 ... but don't ask me why I know it...). So I'm going to try to use it and see if HE uses my efforts for some good.
I've already been blessed by just learning the greeting section of the first chapter. Paul is telling the Philippians how he thanks God every time he thinks of them and how he prays that their love may grow in knowledge and depth of insight. It made me think about how we have to LEARN to love one another better and about how my simple, human EMOTIONS are not the same as learning to abound in Christ's love.
We can all get better at that old, simple, Christianity 101 rule, right?
Love one another.
So simple. So difficult.
I'm praying that my walk through the book of Philippians will give God places to shine His light into the little corner of the world that I happen to be in.
And, prayer warriors, I have a request:
Emma's ENT's prediction is coming true. "Plan on being frustrated by her ears for the next couple of years"
Emma has had a sinus infection and an ear infection for the past week or so. She's been on antibiotics, which are, of course, messing with her tummy.
But she has another sedated hearing test tomorrow.
So we went to the doctor this morning for her pre-op appointment and her ears are clear. Her tummy is not happy and she's still got a bit of a cold, but her EARS are fine.
That being the case, we're going ahead with the sedated procedure tomorrow.
Please pray that
1) There will be no complications with being sedated. Last time we put her under, her tummy bled, but that was general anesthesia whereas this is just sedation with chlorohydrate ... not that chlorohydrate sounds like a good plan for a tummy that's unhappy, but if we wait for that to resolve, the fear is that her ear tubes will clog up again before we get to the test.
2) The test results will be accurate. The medical community often views this hearing test as the gospel truth about what Emma can and cannot hear, but I know many parents who don't believe the results of an ABR for their kids, so please pray that we will feel peace that the results are in line with what we observe of her behavior at home.
3) Emma's hearing will not have gotten worse. I'm not sure what to predict on this one, her response to sounds is just so inconsistent ... but the reason we are re-doing the test we did in November is because that test showed her hearing had gotten MUCH worse. Please pray that those results were, indeed, wrong.
We are so blessed by your prayers!!!