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

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The Road to Recovery is Not Always Smooth

We know all too well that there are bumps in the road to recovery.  We’ve seen it before with Matthew (Bumps, Rough night, Tough day), but he had been doing SO well, we were hoping that this time we would have nothin’ but smooth sailing.

We arrived home late Tuesday evening, and Matthew slept through the night — amazing.  He was bright and chipper on Wednesday, slow to eat but taking fluids without a problem, then slept through the night again Wednesday night!  I can’t remember the last time we had two nights in a row without sleep interruptions from Matthew.  (Something very special happened Wednesday evening before I put Matthew to bed, too, but that will require it’s own post.)

Was it my imagination, or was I already noticing other improvements as well?  Wednesday and Thursday, Matthew’s words sounded more clear to me.  I was hearing diphthongs!  (For those of you who didn’t grow up in a household where diction was emphasized, a diphthong is a vowel sound that is actually made up of two separate sounds strung together.  The second sound is often subtle, but important nonetheless.)  For example, the word “no” used to sound like “n-oh” from Matthew, but now he is saying both vowel sounds, “noh-oo.”  (Maybe it was just all the practice he had saying “no” in the hospital?!)

Also, he says “hi,” instead of just “haaah” now.  There is a definite “Hah-ee” sound.  Today, I even heard a completely new word from him – “Yeah,” or “Yea-eee!”  It’s so much fun to see improvement in his speech already – it must help to be able to hear, and to not have two golf-balls in the back of his throat!

His throat is sore, though, and even though we’ve kept up on his tylenol and ibuprofen, the pain caught up to him last night.  He was fussy in the evening, and cried and cried at bedtime.  This is really unusual for our Matthew, but the more he cried, the more his throat hurt … and the more he cried.  It was a vicious cycle, and we had a really hard time calming him down.  He finally settled down about 3:30 am, but none of us had gotten any sleep.  He was exhausted today, refused his morning bottle, only ate a couple bites of breakfast, then only napped for 45 minutes.  Thanks to a neighbor bringing over his favorite ice cream, we did get some “nutrition” in him, and then he started drinking his milk again.  The same neighbor took Micah to her house for a couple hours today so I was able to rest a little bit when Matthew rested, and take better care of our little guy.

When I was brushing his teeth tonight, I noticed that he has a molar coming in!  The poor guy is teething a molar on top of recovering from tonsil surgery!

…….. I’ve been staring at this screen for 10 minutes, trying to figure out how to “wrap up” this post and say goodnight.  So, I think I better just say, “goodnight” and leave the rest for another time.  Thank you all for loving our Matthew, and caring enough to read this and check in on him.

Evening Update

Matthew continued to do very well this afternoon.  He was starting to get restless in our hospital room, so the nurses unhooked him from his monitors and IV for a little while so he could go down to the playroom.   He ran up and down all the halls with a push-toy, went up and down the wheelchair ramp many, many times with and without the push-toy, played with all kinds of things in the playroom, ran around out on the outdoor play deck … the nurses were saying, “you do not look like you had surgery today!”  Then, he settled down with one of his new “signing time” DVDs, downed 2 bottles and gobbled up more mashed potatoes, meat, and gravy for dinner.  Then, it was up and down the halls again!  I wasn’t sure when he’d get tired, but I was exhausted! It was wonderful to see him doing so well, though.

Later, he did get tired, and very upset with his medications.  He hates taking medicine, and vomited 2 doses of Tylenol/Ibuprofen this evening.  He was tired, but found sleeping in the hospital difficult.  We did get him calmed down (with another Signing Time DVD … someday we’re going to have to meet Rachel and give her a big hug!), and he fell asleep in Daddy’s lap.  We’re praying for a peaceful night for Matthew and Daddy.  I’m at “Bubbi and Papa’s” house with my other 2 boys, and ready for bed as well.

My little miracle, you are one tough guy.

… in other news, Jesse is taking some steps independently now, and signed “Bubbi” and “Papa” today.  That makes 3 signs for Jesse … the first was “cold.”  -such a Vawter boy.

Where’s the Ice Cream?

Matthew did very well through his surgery today. 

The surgeon was delayed by a couple hours, but even with having nothing to eat or drink since dinner last night, Matthew was in great spirits as we waited, charming and entertaining his nurses and everyone in the waiting room.  They usually give the kids a sedative medication before they wheel them back to surgery to ease the “goodbye” process, but Matthew didn’t need that, as he was giggling and playing with the nurses, even as they wheeled him away from us and into the operating room.  They even waited to start his IV until he was sedated, which was very nice.

The surgery itself went very smoothly.  Dr. Ahlstrom said that his tonsils and adenoids were absolutely enormous, so he definitely needed this surgery, and probably should have had it even earlier.  He still had fluid behind his eardrums, too, so she is optimistic that the tubes will greatly help his hearing. 

Matthew took longer than usualy to “wake up” from surgery, which is no surprise considering how his mother and grandmother react to anesthesia!  Thankfuly, though, he doesn’t get sick to his stomach and dizzy like we do – he woke up calm and mellow.  He had trouble keeping his oxygen saturation up for about an hour, but did just fine with a little extra oxygen.  After he fully woke up, he no longer needed it.

He sat and snuggled with us for awhile, then drank a full bottle of milk, and by 1:30 he was eating mashed potatoes and vanilla pudding.  As I am typing this, he is very happily playing with a new “driving” toy we got for him, pushing buttons, smiling and giggling.

I’d say he’s a champion – I don’t know if I’d be doing as well as he is at this point!

Thanks again for the prayers.

Tonsils, Tubes, and Sleep Apnea

For quite awhile now, we’ve been concerned that Matthew has sleep apnea.  I didn’t write about it until now, because I felt like I needed more information before I shared this with all of you … more than just my “mother’s inkling” that we needed to have this issue addressed.

You see, Matthew is tired all the time.  Sometimes by 9:00 am, he is lying on the floor or the couch, just snuggling.

And, I know that he’s not at his best when he is tired – – I’m sure not, when I don’t get enough sleep!

As I looked into this issue, I was a little surprised to find that Matthew has all the symptoms of sleep apnea.

His sleep is interrupted – he can be up 2 or 3 times a night on a regular basis – and those are just the awakenings that we are aware of.  Some nights are better than others, though.  And, when he has a good night, -wow!- what a happy, playful, agreeable, sweet boy we have!

Bad nights??  Don’t ask.  He’s impossible.

He sleeps with his head tilted way back (the position helps to open his airway.)  He snores.  He breathes through his mouth.  If he has any kind of infection (which enlarges the tonsils even more), all these symptoms worsen.  One article I read even mentioned that poor growth/weight gain can be a symptom of sleep apnea, and at 24lbs, Matthew isn’t exactly topping the charts for a 2 1/2 year old!

I knew that if this was a problem for Matthew, fixing it would help a lot of things – his demeanor, ambition, and ability to learn during the day were my primary concerns.  And, the fix is so simple – just take the tonsils and adenoids out.

When I started looking into things further, I was surprised by just how serious the affects of sleep apnea can be.  Here are some excerpts, linked to the original articles:

Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome.

Also, this doesn’t just affect his mental health.  It affects his physical health, too:

Why is this important? The first problem is that of the child not getting enough quality sleep and the behavioral effects that brings. Second, during sleep apnea, the oxygenation of the blood decreases. It has been shown that in children with DS and heart disease the low blood oxygenation causes an increase in the blood pressure in the lungs as the body tries to get more oxygen. This “pulmonary hypertension” can cause the right side of the heart to become enlarged and other cardiac complications can follow.

At Matthew’s last cardiology appointment, they were actually a little concerned about him developing an enlarged right heart.

So, why haven’t any of our doctors brought this up, or even mentioned it?  I don’t know.  But, our fantastic pediatrician in Yakima would always remind me to trust my instincts with Matthew – – after all, I’ve been right before. 🙂

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A few weeks ago, we took Matthew to a pediatric ENT in Spokane.  With all of his issues, we are more comfortable having him seen at Sacred Heart Children’s Hospital, which is where he was born, and also where he had both of his surgeries.  The doctor we saw seemed very comfortable with Matthew, and acted like this was all very routine for her.  She took one look in Matthew’s mouth and said, “Oh yeah – the tonsils are enlarged, but at least they’re not touching yet!”  She said that most kids with Down syndrome need to have their tonsils around age 3, if not before.  Adenoids come out, too, since they are a major culprit in blocking the nasal airways.  She said that the tonsils and adenoids grow at a normal rate, but Matthew and his airways remain small … so naturally, they need to come out.

I was happy that she could diagnose him without having to put him through a sleep study.  His symptoms and anatomy were enough, and she really thinks that this will make a big difference for him.

Matthew did very well during his appointment – was happy, cooperative and playful.  Of course, it helps that he is SO used to getting his ears checked, that sometimes he’ll just do it himself:

Say "Ahh!"

Matthew must have done a good job charming her, because she told us how impressed she was with him:  “He’s going to be really high functioning, you guys!  He is social, interactive, and already has some communication and verbal skills!  That’s great!”  We are proud of Matthew no matter what, but it still makes our Mommy and Daddy hearts happy to hear that from a pediatrician to sees a lot of kids like Matthew.

We talked about having tubes put in his ears at the same time, due to his history of ear infections (we averaged one ear infection per month over the winter.)  She said he has fluid behind both ear drums, which is probably chronic.  She tested his hearing – he failed.

That surprised me – I thought he was hearing just fine.  But, now that we know he’s having trouble hearing things at low levels, we talk louder, and he responds better!

So, tubes are a go.  And, they can do it all at the same time.  The doctor was very encouraging that these surgeries could really help, and although it’s not ideal to put Matthew through more procedures, sleeping, breathing, and hearing are all really important things!

First thing in the morning, July 19th, Matthew will be in the OR again.  He’ll spend all day and all night in the hospital, hopefully going home Tuesday morning if everything goes as planned.  Good thing he likes ice cream and popsicles – and we’ve ordered a couple new Signing Time DVDs to help pass the time.  Your prayers that the procedure goes smoothly are appreciated!

Meanwhile, we’ll be enjoying the summer sunshine.