Annual Cardiology Check-Up

Yesterday was Matthew’s annual cardiology check-up.  Height: 2′7″   Weight: 23 pounds.

The first thing Dr. Anderson said when he walked in the room was, “How is Miracle Matthew?”  I really appreciate that he always remembers, and comments on Matthew’s miraculous healing.

Matthew cooperated very well for the echocardiogram – he just relaxed, sipped on a bottle, and watched the “Baby Einstein” video up on the screen.  ( … not my favorite video series, but that’s a topic for another time!)

During the echo, the technition said, “So this is Matthew!  His name has been brought up at many a cardiology conference.  I looked back in his file – it’s really interesting to read the surgeon’s reports … he has had quite a journey, hasn’t he?”

It was a good reminder to Aaron and I that he really is a miracle, and that, at one time, his heart really was that bad.  Sometimes our journey seems like a bad dream … the memories a little foggy over time (or maybe we were just living in a constant foggy state?  That could be true, too.)  Living with Matthew every day, we often see him as ”Matthew the Menace: a force of destruction like you’ve never seen,” and forget that it’s a true miracle that he is able to be a menace at all.  Cardiology appointments are good reminders that he is Matthew the Miracle:  a gift from God.

The test results?  His heart still looks good – the patches are doing well, and there are no adhesions (extra tissue bands) around the valves, which can sometimes form after surgery.  His mitral regurgitation (valve leakage) is “mild to moderate,” but not significantly worse than 1 year ago.   If the leakage causes the left side of his heart to become enlarged, he may need a valve replacement down the road.  For now, though, the left side of his heart looks just fine.  Considering that 2 1/2 years ago, we were told the left side of his heart was too small to support life, it seems ironic that now we’re worrying about it being too big.

There is nothing we can do about it, though – except to keep praying.  Matthew is in God’s hands, as he always has been. 

…and that’s all the heart news until next year!

Dinosaurs A to Z

Micah enjoys the PBS kid’s show, “Dinosaur Train.”

I like it, too – a pteranodon family adopted a dinosaur egg – not knowing what species the child was, but ready to accept and love him no matter what.  “Buddy” turns out to be a T-rex, who grows up with his pteranodon brothers and sisters.  All of the kids are polite and kind, respectful of one another and the adults.  They encounter some challenges due to their differences, but always work it out together and find things to play that everyone can do and everyone enjoys.  The little dinos spend a lot of time learning about other species, and praise one another for what they can do, instead of anyone focusing on what they can’t do.

Here comes my favorite part:   One of the brothers (Don the pteranodon) takes just a little longer than the others to catch onto things.  It’s subtle, and no character in the show ever mentions it.  But, he’s never left out, never made fun of – the siblings just accept him without question, take the time to include him and explain things to him.  I love it.

We were able to buy and download the first episodes on itunes – the kids really enjoy the show, and have learned several of the songs.  When Micah doesn’t want to eat his veggies at dinner, we all break into the “hungry, hungry herbivore” song and sing, “… if it’s GREEN, it’s GOOOOOD!”

On the show, the dinosaur kids want to be train conductors when they grow up.   The conductor tells them that a conductor needs to know all the dinosaurs, because there are train stops for each species.  Then, he sings them a song he uses to memorize the dinosaurs.  To see it, click here.

Micah, of course, wanted to be a conductor, too.  He begged us to help him memorize the song, and when he had learned every dinosaur, he rewarded himself by wearing his “conductor” hat and calling himself a conductor.  Here is Micah – barely 4 years old – with his dinosaur song.  (I apologize for the video quality – I want to capture this with my new (much better quality) digital video camera, but I haven’t yet.)

From Micah’s Mouth

Micah’s mouth is always moving – here is just a sampling of some things we’ve heard lately:

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“Maffew, say ‘da-da’”

Matthew: “da-da!”

Micah (very proudly): “Yup! I learned ‘im that!”

. . . . . . . . . . . .
While helping to clean 10″ of snow off the minivan up at the mountain:

Micah: “GOD!”

Mommy (cautiously): “What did you say, Micah?”

Micah: “Oh – I’m just talkin’ to God.”

Mommy: “o.k.  Go ahead!”

Micah (playfully): “GOD!! Why did you cover up our car with SNOW!???”

. . . . . . . . . .

Micah eating dinosaur chicken nuggets:

“Mommy, is this a styracosaurus or a protoceratops?”

“What do you think, Micah?”

“Well, the frill does look a little bumpy, so I think those are the spines. It must be a styracosaurus.”

. . . . . . . . . .

“Mommy, I need to feed my babies.”

(half paying attention): “o.k, Micah”

“he-he-he-he.  Mommy, it tickles a little bit when I feed them!”

yes – he’s pulled his shirt up, and has two dinosaur “babies” latched on!

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At dinner, when we were really having a battle with Matthew over throwing his food, Aaron and I both had our attention mainly focused on Matthew.  Meanwhile, Micah was slurping his yogurt off his spoon with each bite, giving us (as usual) a running commentary that we largely tuned-out, due to our focus on throwing, screaming Matthew and the attention/discipline he needed.  This time, though, the comments went something like this:

“I’m a good boy, I’m not throwing my food (slurp).  I’m a good boy, am I?  I’m just eating (slurp).  I never throw my food (slurp).  I do a good job and I’m not getting in trouble (slurp).  I don’t need time outs.  Matthew needs time outs, but I don’t need time outs (slurp) because I’m being good.  I’m the best boy at the table (slurp).  … I’m just suckin’ up!”

At that point, Aaron and I couldn’t help but just stop and laugh.  He meant his yogurt … and questioned what was so funny!  Aaron just explained, “It’s funny for reasons you don’t understand, Micah!”

I’m happy to say that we seem to have won the battle with Matthew (for now).  He hasn’t thrown his food, spoon, or cup for about 4 days now – he makes sure we’re watching, then proudly puts the object on his tray and expects praise.  He even ate with a plate for the first time, and it stayed on the table through an entire dinner!  It’s been a long battle, but has shown us that consistent, repeated discipline will work if we stick to it long enough, and encouraged us to “keep it up” in other areas, too!

. . . . . . . . . . . .

At the point of exhaustion when every task seems monumental:

Mommy:  “Micah, please go potty before bed.”

Micah: “Well, you see … (sigh) … The problem with going potty is … (sigh) … that then I have to clean my bottom.”

Feeling Better

I wanted to let you know that I’m feeling better …

No, Jesse is not taking a bottle, but he is sleeping for longer stretches.  In fact, the last couple nights, he’s only been up twice!

My husband is doing everything he can to help, giving me naps and sleep-ins whenever possible, and taking the older two boys on daddy-dates.

My parents, as always, have been an incredible help – feeding us many meals, stopping by just to help, and taking care of our boys so we can get some things done.

And, the 3 boys and I are settling into a routine of sorts – slowly adjusting to life with our newest family member.  I will post pictures from Christmas and New Year soon- but for now I’m glad to be settling, recovering … not trying to travel or do too much – letting the “clean but not folded” laundry pile up… and just taking care of what needs to be done.  I didn’t mean to complain in that last post – rather wanted to be honest, and explain why the blogging has been scarce recently.  Thank you all for your prayers and encouragement, though – keep that coming, please!

The other thing that has helped is “the gate.”

It has solved a host of problems, (including, but not limited to):

“Matthew, no touching the computer.” “Matthew, no throwing the mouse.”  “Matthew, no throwing Mommy’s important desk papers on the floor.”  “NO EAT PAPER!” “Matthew, no climbing on top the piano keyboard.”  ”No touching the window shades!”  “Matthew, close the desk drawers.”  “Matthew, no bamming the computer.”  “NO EAT PIANO!” “Matthew, no bamming the piano.”

and, most importantly: “MAAAAAAAAAAAMMMMMMAAAAAAA  MAFFEW’S DESTROYING MY (fill-in-toy-here)”

When we told Micah that he could have some of his own space, the first thing he grabbed was his bin of cars, which had sat untouched for weeks.  Finally, Micah could make his neat lines, his own imagined scenarios, untouched by Matthew the Menace … all while wearing his ski helmet and goggles, which have only occasionally left his head since he discovered them in the closet earlier this week!

 

Yes, I think the gate will be a good thing, even though Matthew is less than thrilled with it at the moment.  At the end of the day, though, I think we all benefit- and Matthew is happier to hear less of the phrase ”No-No, Matthew!”

Matthew’s biggest concern, I think, was whether or not he could still watch “Signing time” DVDs on the computer.  To ask, he points at the computer, then sign-babbles with his hands – very cute.  Yes, he can still watch his videos …  from outside the gate.

Talipes Terminology

Quick question:

I’ve been using the phrase “club foot” to describe Jesse’s foot, but I’ve recently discovered that may not be correct. 

Medically, the term is “talipes”

talipes /tal·i·pes/ (tal´ĭ-pēz) a congenital deformity in which the foot is twisted out of shape or position; it may be in dorsiflexion (t. calca´neus), in plantar flexion (t. equi´nus), abducted and everted (t. val´gus or flatfoot), abducted and inverted (t. va´rus), or various combinations (t. calcaneoval´gus, t. calcaneova´rus, t. equinoval´gus, or t. equinova´rus) .

However, this condition is commonly called  _______?:

a) “club foot”

b) “clubfoot”

c) “clubbed foot”

I’m asking you, my readers, to help me.  What is the right term?

Opportunity

A door inadvertently left open …..

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A mother, distracted for a mere moment …..

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An opportunity …..

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I wasn’t sure if i should scold him, or say, “keep up the good work – make sure you scrub all the way around the rim!”

Exhaustion

“Maternal exhaustion is a very real thing,” our pediatrician said, after inquiring about Jesse’s sleeping habits.  “It can lead to stress, depression, and all kinds of bad things.”  I hadn’t even told him that in addition to Jesse waking up 4x per night to eat, Matthew has been getting up 2-3x per night, fussy with teething and another ear infection.  I hadn’t told him that I was nearing my breaking point, unsure whether I was just simply exhausted or if I might have a touch of postpartum depression.  It was good to hear that the exhaustion alone can explain a lot of what I’ve been feeling lately.

“You can’t get all of your sleep in 2-3 hour segments,” he continued.  “You never enter REM sleep, and your brain never has a chance to repair itself.”

Well, that explains a LOT!

His recommendation was to get Jesse to take a bottle (no luck so far), and “tank him up” at bedtime to see if it would help him sleep for a longer stretch.  If he will take a bottle, Aaron can even give him a “relief” bottle during the night to let me sleep a little more.  “You have to take care of yourself,” he reassured me.  “You’ve had a lot going on, and have 3 high-needs kids, with an especially high-needs 2-year-old!”  He had some good suggestions for introducing a bottle, and we’re working on it.

He also suggested getting some hired help.  Can I get a prescription for that, please?!

The good news is that Jesse is healthy – his foot looks great, and at 4-months-old, he is weighing in at over 16 pounds, which puts him in the 80th percentile for weight, and the 90th percentile for height!  He’s active, alert, and full of smiles for anyone who will talk to him.  He is an unusually happy baby most of the time … as long as he is being held!

I realize that I neglected to post anything about our last trip to Shriner’s, but things went very well.  His foot still looks pretty good, although the doctor is still a little unsure of his bone alignment.  We got permission to give him a little longer “breaks” from his brace during the day, which is very nice.  We all enjoy the time off, and Jesse is much happier to play/kick on the floor when he doesn’t have to wear his brace.  As long as he is wearing it 20-22 hours per day, we’re o.k.  He is outgrowing his current “shoes,” though, and we have new larger ones ordered.  The good news is that we don’t have to go back to Shriner’s for 3 months, so our next appointment will be in March.  It will be nice to not have to travel too much during winter weather.  We also learned that Shriner’s might reimburse us for some of our travel expenses – they want all of the care to be “free,” including transportation.  Wow.

Jesse, 5 weeks old

*Thanks to my friend, Theresa Bettale, for the baby portraits of Jesse.  If you are near Hood River, OR, check out Bettale Photography.

Brothers

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Jesse’s Club Foot: Good News and Bad News

Cast #5

When we arrived at Shriner’s last week, I thought we would exchange cast #5 for #6, and hopefully get definitive word on whether or not Jesse would need surgery on his Achilles tendon, based on the X-ray.  When Dr. Aiona entered the exam room, he had a perplexed look on his face and tentatively said, “Well, the X-ray looks ok …“  Uh-oh.  That’s not the fantastic news we were hoping for.

It turns out that Jesse’s foot is just not “fitting the mold,”  (surprise, surprise … he’s one of ours!) and has his doctor a little puzzled.  The Achilles tendon is not tight, and Jesse’s foot has plenty of dorsiflexion, so there will be no need to cut the tendon (Hurray!!).

But, there are a couple of bones in his foot that are not lining up correctly, and the only thing we can do about it is “wait and see.”  Hopefully, as he grows and his muscles develop, his muscles and tendons will pull those bones into place.  I’m not sure what happens if they don’t …

Also, the tendons on the top of his foot seem tighter than they should be – near the area where the bones aren’t lining up.  The doctor said it’s almost as if his foot is bending in the middle of the foot instead of at the ankle.

Here is what his foot looked like after the cast was removed:  In the profile picture you can see the “bump” on the top of his foot from the misaligned bones.  He is also very flat-footed, with no arch whatsoever.

But, Dr. Aiona felt that another cast wouldn’t do any good, so we moved on to bracing.  He is supposed to wear this contraption 24/7, and then we will head back to Shriner’s in a month for a check-up.  Yes, a whole month without a trip to Portland!  That will be nice.

"Awww, Mom! All the other newborns are wearing Robeez!"

The first few days, he was incredibly fussy with these shoes – even more so than with the casts, but he has become more used to them now.  We’ve all had to learn how to live with these braces, which has involved several modifications, like a pillow for his feet to rest on at night and cutting the feet off of all of his little outfits.  Luckily, I can still wear him in the baby bjorn, which is his favorite place to be:

The shoes are starting to give him a pressure sore on his left foot, so Shriner’s is sending me some special padding to put inside the shoe.  Hopefully that will help, but meanwhile we get to leave his shoes off for longer periods of time, as long as we are massaging and moving his foot.  The longer he’s been out of the cast, the better his foot looks to me – and the tendons that were tight on the top of his foot seem to be loosening up.  He still has the “bump,” though, so we would appreciate continued prayers for healing and proper bone alignment.

Meanwhile, he’ll be wearing the brace until he can stand up on his own … then he’ll only wear it at night for the next 2-4 years.  Jesse, no one could make them look cuter than you do, though!

Trying to take the “ouch” out of yearly blood work

I hate needles.  I’m pretty tough myself, but I hate it when my children have to get “stuck.”  Every time they need immunizations, I get a knot in my stomach starting the night before, and I want to just cry along with them in the doctor’s office.  I can’t stand seeing my children in pain, even though I know it is best for them, and am so very thankful for the immunizations!

Because Matthew has Down syndrome, he also has to have yearly lab tests.  People with Down syndrome have a higher chance of having thyroid dysfunction, leukemia, and other diseases, so he gets his blood taken once a year to make sure he’s healthy.  I know he needs the tests, but I still hate the needles!  This year, I asked his doctor for some EMLA cream (a topical anesthetic) to see if it would help.

The cream numbs the skin, but is a prescription and must be applied 45-60 minutes ahead of time – so it takes some planning ahead.  When the technician first poked Matthew with the needle to draw his blood, he looked and acted like he didn’t feel it at all – didn’t even flinch!  But, then she had to “dig” a little bit to find his vein, and he started to cry.  It was short-lived, though, and the whole experience was much less traumatic (for both of us!) than I had anticipated.  I think the EMLA really helped.

I thought I would share the EMLA idea with you other mommas, but I’m curious about your own experiences.  What have you tried to make these experiences better or less painful?  Has anything worked for you?  What about immunizations?  Micah’s 4-year old appointment is coming up (4 shots!!) and I’m already dreading it.  Our doctor said the EMLA works well for blood draws, but doesn’t help very much for shots because the pain from the shots is quite a bit deeper.