Jesse’s Eye: All-Clear!

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Five months ago, Jesse had a 3rd surgery to clear his clogged tear duct.  The surgeon made an incision to clear out the blockage and scar tissue, and placed a stent that was supposed to stay in for six months.  The experience was traumatic for Jesse, the scar was ugly, the stent only lasted ten days, and we weren’t sure that the whole thing wasn’t a complete failure.

He has done very well since then, though.  His eye has seemed to be draining well, and he hasn’t had any eye infections since his surgery.  (Previously, eye infections seemed to hit him every 3-4 weeks.)

We saw our surgeon for a check-up yesterday, and he gave Jesse the all-clear!  His eye is healed, and we won’t be needing any more procedures.  Hooray!  Our doctor explained that the surgery portion of the procedure has an 85% success rate on its own, and the stent raises that success rate to 95%.  He said if we had tried to only place the stent, it wouldn’t have worked at all (since it didn’t stay in!).

Also, only five months later, his scar is invisible to anyone who doesn’t know it’s there.

We are so thankful.

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Jesse update

Jesse is feeling much better tonight. He’s back to being a bouncing ball of energy … the challenge is to keep him from bouncing on his face!  Thank you for your prayers.

Baby Jacob: update

Thank you for your prayers for baby Jacob.  His surgery went very well yesterday.  The doctors were able to repair the holes in his heart and the valves, and it all looks good.

He now has the tough job of recovering from it all, so please remember to pray for him and his family.  Those of us who have been through it know just how hard it is on a mommy & daddy to see their baby go through this.

Please visit Susan’s blog (The Ups & Downs of the Allred Family), for updates and to offer your prayers and encouragement.

Our family is on the road to recovery, too.  After Matthew was so sick, Jesse’s ears started to act up again … but we are finally all feeling much better.

Medical Update: Cardiology and ABR

Matthew saw our wonderful cardiologist, Dr. Anderson, last week.  His heart is still looking good!  We didn’t expect any less, but good news is always appreciated.  His repaired valve is still leaking mildly, but not enough to be of concern, and the right upper chamber of his heart is slightly enlarged because of the leakage, but it hasn’t changed from last year.  Matthew was SO good and cooperative for the tests, the doctors were able to get a really good, clear pictures.  So, with smiles on our faces, we said goodbye to Dr. Anderson until next year!

. . .

All of Matthew’s hearing tests since his ear tube/tonsil surgery have been equivocal, meaning the doctors really can’t tell how well he is hearing.  So today, Matthew had a specialized hearing test called an ABR.  He was under anesthesia for over two hours, while doctors measured his brain response to sound.  It is the best way to know what a child can really hear, and although we were not excited about another procedure and more anesthesia for our little guy, we need to make sure he is hearing as well as possible.

The doctors took very good care of him, and we were even able to get his annual bloodwork done while he was under anesthesia.  They gave him some Versed before they took him back, so he was very relaxed about going back for the procedure (and probably won’t remember much about the whole ordeal!)  The anesthesiologist gave him a pretty hefty dose of anesthesia, too, to make sure he didn’t wake up during the long procedure.  But, waking up was difficult.  It took Matthew a long time to come out of the anesthesia, and when he did wake up, he was mad.  He was pretty upset for several hours, and even his favorite Signing Time videos weren’t able to calm him down.  Aaron finally took him for a drive, hoping to put him to sleep.  He didn’t sleep, but he did calm down, and when they got back around 4:00 this afternoon, he ate his first solid food of the day:  cucumbers, frozen peas, cheese, summer sausage, and crackers.  After a good snack, we finally saw some smiles, and an hour later, he was as goofy as ever.

The results?  Not quite normal, but good enough.  It’s what we’ve come to expect from this one.  Nothing is ever “normal,” but we’re happy with “good enough!”  He may have some small hearing loss of very low tones, and some of the readings weren’t quite normal, but it looks like one of his ear tubes may be plugged, interfering with the readings.  For now, his doctors are satisfied that he’s hearing everything he needs to hear, and we’re happy to not enter the world of hearing aids … at least for now.

It’s been a long day, and we’re all exhausted.  I wish we could say we’re done with anesthesia and procedures for awhile, but Jesse’s tear duct is still plugged, he has another infection in that eye, and it will need to be probed again soon.  The staff at St. Mary’s same-day-surgery are getting to know us a little too well.

Matthew update

As is often the case, I have a songs from Rachel Coleman’s “Signing Time” series running through my head.  Even Micah can be caught humming a line here or there throughout his day.  How can we be anything but grateful, though, as these videos have given Matthew the ability to communicate.  He now has about 100 signs that he uses regularly and appropriately, with his vocabulary building daily.  (Newest additions: “farm,” along with a host of farm animals, and “rain.”)

Today’s tune is from the “ABC Signs” video (series 1, volume 5).

“So many letters, so many signs … so many words and so little time …”

Appropriate for today, as I do have so much to do, so many words to share with you, and so very little time.

Matthew’s recovery from his tonsillectomy was rougher than we expected it to be.  After another rough night, we took him to Urgent Care, where the doctor prescribed some stronger pain medication for him.  You see, the surgeon sent him home on nothing but tylenol and ibuprofen – and it just wasn’t doing the job.  He was refusing to eat or drink anything, and we were going to end up in the ER for IV fluids if we didn’t get his pain controlled enough to let him drink.  He still refused to eat for 2 1/2 weeks, but at least he would drink his milk.  (Oh how he loves that milk!)

After he finally made a full recovery, he has slept through the night nearly every night, and has been much more awake and alert during the day!  Hooray!  The tubes in his ears seem to be doing the trick, too, as we haven’t had any ear infections, and there have been subtle but definite improvements in his speech.  We were just waiting to see if his follow-up hearing test would confirm that these procedures had done everything we were hoping they would do.

However, the hearing test results were not as stellar as we would have liked.  His results were “inconclusive,” but still gave him a big “FAIL” in both ears, with both the hearing-booth test and the instrument test (like they do for newborns).  The doctors told us that they really weren’t sure how well he could hear anything softer than a regular speaking voice.

At first, this news broke my heart.  You see, I have quite a soft speaking voice, and I whisper and sing quietly to my kids as I put them to bed, rock and comfort them, etc.  What if Matthew hadn’t been able to hear any of these things?

A good friend shared some wise words of comfort with me the day we got that news.  She said, “Amy, even if he doesn’t hear you say ‘I love you,’ he knows it.  And, aren’t you glad that you’ve continued to use sign language with him?  Even when your therapists were not supportive of it, YOU knew it was the best thing for him!”

She was right, of course.  But, no matter what, it’s still hard to hear less-than-ideal news from any of Matthew’s doctors.  He’s our Matthew, after all!  Meanwhile, we’ve been trying to do our own “tests,” to see if Matthew hears us, and I think he hears more than he lets on at the doctor’s office.  He does respond to whispered requests (if he wants to), even if he doesn’t see our lips moving.  For example, in church on Sunday, Matthew was sitting on Aaron’s lap. He whispered very quietly behind him, “Kiss please, Matthew?”  Matthew immediately turned around and gave his daddy a very sweet kiss.

So, even though we are less worried than we were initially, we still need to make absolutely sure that Matthew is hearing everything that he needs to hear – especially for speech development and learning.  The next step is a sedated hearing test, where they measure his brain waves as they play soft sounds in his ears.  We’re hoping and expecting that the test will show that Matthew’s hearing is normal.

I know that it is important to make SURE that Matthew is hearing everything he needs to hear … but, I still hate it.

I hate the fact that he needs something “else.”  More sedation.  More anesthesia.  Another procedure.  Hasn’t the little guy been through enough already??

And, of course, they want us to travel back to Spokane to have the procedure done.  We are looking to see if there are any doctors closer to us who perform this test, as we are growing weary of traveling for all the medical procedures.

In the meantime, we will continue signing, singing, and whispering “I love you”s and “good night”s to all of our sweet boys.

Just Another Wednesday Night

Lullaby, sweet baby.

Lullaby, little one.

Know our time together has just begun…

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Sometimes we are reminded that our time with Matthew – time we once thought would be very short – has really just begun.  And, more importantly, God’s work in him and through him has only just begun.  The miracle of Matthew was not finished with healing of his little body.  God has big plans for our little boy, and sometimes we get a small glimpse of that.

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Wednesday evening, I was carrying Matthew down the hall on the way to put him to bed, when we reached out his little hand toward a photo on our wall, and said, “uh.”  That’s his way of saying, “I want!” so we stopped to look at the picture.  It was a portrait of my brother’s family.  Matthew signed “baby,” and pointed to their littlest girl, then to all the cousins, and as he pointed, I narrated as usual.  “Yes, that’s baby Teresa … and Dominic, and Catherine, and Christopher, and Marianne, and Bernadette, and Uncle Ken, and Aunt Danielle.”  Satisfied, Matthew held out his pudgy little hand and indicated the whole family.  “Your cousins,” I said, and he nodded.

You see, that is the method of communication that works best for us right now.  Matthew signs or gestures, and I narrate.  If I’m right, I usually get a nod, or at least a look of “yes, Mommy – you are right, and you are understanding me.”  If I’m wrong, I usually get an emphatic, “no!” or shake of the head, and he signs again.  He’s pretty good at making himself understood.

After naming all the cousins, Matthew put his hands together.  I wasn’t sure what he meant, but I guessed the only sign I could think of:  “Pray?”  Matthew nodded “yes.”  He pointed at the picture again, signed “pray,” then put his hand on his chest: “Matthew.”

“They pray for Matthew?”

yes,” he responded with an enthusiastic nod.

I was a little stunned, but Matthew was satisfied that I had understood what he was trying to tell me, and was done looking at the photos on the wall, so I put the little wonder to bed and promptly called my brother.

“I have to tell you what happened here tonight,” I began.  I explained that Matthew just doesn’t put things like that together – a full sentence, especially when we hadn’t been talking about prayer or their family, was quite remarkable.  In fact, I hadn’t ever seen him sign “pray” except at the dinner table.

“How long ago was that,” my brother asked.

“About 20 minutes ….. why?”

“Well, we finished our family rosary about a half hour ago, and Matthew was our intention,” he replied, not surprised at all that Matthew knew of their prayers for him.

To all of you who have kept Matthew in your prayers:  Thank you.  Somehow, I think he knows – and he has shown us that prayer is more powerful than we had ever imagined.

Matthew, I’ve said it before, but I just want you to know what an honor and joy it is to be your mother.  xoxo