handsful

Lainey proudly showing off the sticker Dr. M gave her on Tuesday.

Lainey had an appointment with a new ENT this week, to check on her ear tubes. Turns out her left one is still in and working, but the right one had fallen out and imbedded in some wax. He used a torturous looking device and pulled it out. Lainy winced and whimpered a bit, but she was so brave :) The ENT said her ears look fine, no fluid, so there shouldn’t be any need to replace the tubes when they both fall out. Great news.

I thought I’d do a quick medical update on where we are with Lainey’s cleft, future surgeries, etc. Hang on, this gets long…

Like I’ve mentioned before, Lainey is an on-going patient in our areas Cleft Palate Clinic, and is seen once a year by a team of professionals who make decisions about her ongoing care regarding her cleft issues. Her last clinic was this past February, and I got a call sometime later tellling me their recommendations based on everyone’s evaluations and their discussions about her case. Seems there is some disagreement among the team on when to repair her fistula. Backing up, her fistula is basically a hole that opened up in the middle of her hard palate, shortly after her palate repair last May…think of the seam in the backside of someone’s pants splitting – it always happens in the middle, right? Where it’s the tightest…Bad visual, huh?

The fistula makes it impossible for Lainey to build up air pressure in the her mouth for sounds like “p” and “b”. Thankfully, even with the fistula, she can blow air out (i.e. blowing bubbles) and suck through a straw, though it’s hard for her. The lead speech therapist on the cleft team thinks her fistula should be repaired now. We recently had a meeting with her plastic surgeon (who did her cleft surgery) and his recommendation is the wait 6 months and see what speech progress she is able to make between now and then (she has speech 1x per week for an hour), and re-evaluate her then. His reasoning is that she doesn’t have enough speech yet to determine whether she may or may not need an additional surgery, called a Pharyngeal Flap surgery, which he would prefer to do at the same time as the fistula repair. P-flap surgery is done when the child has hypernasal speech, which is common for cleft kids.

Are you still with me? Today, when we were with her regular speech therapist, we discussed whether she sounds hypernasal now and she (and another therapist that she called in to also listen) decided that she isn’t overly nasal at all. Good news. The therapist also said that she didn’t see any harm in waiting the 6 months that the plastic surgeon recommended…the same position that the ENT also agreed with on Tuesday.

To throw another thing into all this is a device called an obturator. Think of it like a retainer, that fits onto the teeth and has a piece that completely covers the palate – like a false palate. That would “fix” the air pressure problem without doing the surgery right now and allow us to not lose time on her speech development in the meantime. My next call is to the dentist, to see what he thinks about this option. I’ve talked to other moms of cleft kiddos who have had these with great results. I just don’t want to put Lainey through anymore than needed, but also want to take advantage of all the time we have to improve her speech.

If you happen to be in our “boat” and have dealt with these issues before, I’d LOVE to hear you take on it all. Obviously, we want to do what’s best for Lainey. Her speech is improving, but MUCH slower than we anticipated. Maybe we were naive, thinking she’d just start talking our ears off after the surgery – we’d heard stories of cleft kids who did just that. Lainey’s sign vocabulary increases almost daily (her favorites right now being “now”, “I love you”, and “potty”). We get mixed opinions on that as well. Some frown and think we’re having her rely on her signs too much, others are happy to see her communicating AND vocalizing at the same time (which is always our emphasis – that she approximate the word WITH the sign). We have never regretted teaching her sign…can you imagine the hissy fits we’d be getting right now otherwise??

Okay, I’m done…thanks for hanging in there. It’s nice to have you to bounce all this off of ;)

Anyone watch the TV show “The Amazing Race”? Groups travel around the globe, meeting physical or mental challenges. On each show, the last group to arrive at the designated destination is eliminated. Our homeschool group organized our own Amazing Race this past Friday. We had 9 groups of 4 kids each, and our “world” was a local park. We spread all the continents around the park, with a challenge to meet at each stop. Here, Abbey’s purple group is trying to match flags to their appropriate country.

Lots of fun trees to play in at this park…

The kids did a LOT of running from continent to continent!

In Asia, Abbey amazed everyone with her chopstick skills!

Lainey loved the playground…

let’s run some more…time to put the books of the bible in order.

Payton running with a friend…the race was only for 6th-12th graders. They were bummed.

She climbed up to this slide over and over and over and…

another challenge – pogo sticks!

Ethan conquered the dinosaur rocker!

I had to do it…is this not the cutest thing? Yep, she’s big girl pants all day, every day now. (well, except nap/bedtime.)

After the race, Abbey’s Jr. High pastor gave a fantastic devotion about the spiritual race we run.

Our of 9 teams, Abbey’s team placed 2nd. 5 SECONDS behind the 1st place team. :)

…here are our Easter pictures!

Abbey’s annual egg hunt in our front yard :)

They looked EVERYWHERE! (Abbey told them one of the eggs had $$ in it)

Payton found it on top of mom’s truck!

See my eggs?!

My chains are gone,

I’ve been set free.

My God, my Savior has ransomed me.

And like a flood his mercy rains,

Unending love, amazing grace…
– Chris Tomlin

Our 4th bike ride this week!

I think we’re getting a little addicted to this.

Lainey loves to hop on the back of Randy’s bike and ride!

Stopping for some water and a rest from the oh so comfy bike seat. ;)

What’s better than having water squirted into your mouth?

Took this picture while riding…not bad. We stopped for a treat, halfway into our ride…

Yummy TCBY yogurt!

We were out for over 2 hours today and covered 10.7 miles! I can’t wait till our next one.

This past week, we have been enjoying our spring break. It’s been fabulous. We stayed home this year, opting to go home to NC in May rather than Easter. We had no big plans, no trips or big commitments. Plus, no baseball practices or games freed us up even more….ahhhhhh.

The picture above was taken at a park near our house, overlooking the St. Johns river. Our neighborhood also backs up to this river, and going “into town” means crossing a bridge over the St. Johns. We really love seeing water everyday.

Our weather this week started out CHILLY! In fact, Monday was cool and drizzly – not what spring breaks are made of. Thankfully, each day it got warmer and warmer and the kids were able to enjoy eating on the patio and even swimming. Yes, that’s right, the pool is open baby! (Lainey, could you smile a little more cheesy next time?)

Which means, it’s bathing suit season and Abbey was in need of a suit. Seems she’s gotten too big for girl’s sizes and have you SEEN the suits they market to teens lately? Um, not going there. Shopping so far has been a bust. We’re a one-piece family, and Abs has really wanted a tankini – following the rules of no tummy baring. Well, the tankinis they sell purposefully do NOT cover sufficiently. When we got home, with a very bummed Abbey, it occured to me that I had a few tankinis myself and I thought she might like a couple to try. This one fits her well, maybe a tad loose in the bottoms (no snickering here). She was thrilled…we’ll still probably continue the search for a new one for her, but this works now.

I mentioned that the top picture was taken at a park on the river, right? We were there early this morning, with Abbey’s Basic Engineering class from our fantastic homeschool co-op. Mr. Gadapee is an excellent teacher, and has made this year’s class a major highpoint for Abbey. Remember the popsicle bridge? So fun. Their last project was to make, as a group, a concrete canoe that would float. A while back, all the kids met at the teacher’s home and worked hard (Abbey successfully ruined a pair of pants) to make this 250lb. canoe. Today was launch day…

All the kids took turns going in, two at a time. It floated, no problem…other than Mr. G having to steady it since it was quite top heavy. They eventually convinced 4 boys to get in, and the water was teetering right at the edge, but still floating. The 5th boy got in, and it sank. Not bad!!

One of our favorite parts of this spring break has been our family bike rides. We all have bikes, and Randy has a “co-pilot” seat on the back of his for little L. Our first ride was last Sunday, and we rode 4 miles. This week, between two different rides, we rode 13 miles! It’s been an awesome workout (you should see me right after…major wobbly legs!!) and great fun to bike around our area. We are blessed with lots of sidewalks and mostly flat ground – hey, it’s Florida, not many hills around here :) I get a little nervous when we’re crossing 4 lane intersections, but Randy leads us in hand signals. He’s always in front, and I’m always the caboose. You should see the looks we get from those we pass walking, jogging. We’re quite the sight. I’ll have to try and snap a picture from my vantage point!

Payton has now had his braces for a little more than a week, and he’s over the soreness! One day this week, he said “hey, mom, I forgot I had braces on!” I had told him this would happen, and he was excited for that day to come.

Jack is never far from Lainey when she’s eating. Wonder why? Speaking of the little one, she’s doing great with potty training – wearing big girl pants almost all the time now (pull-up at nap, diaper at night). She now TELLS me she has to potty (yes!!), and has only had 2 accidents.

More interesting things about Lainey this week…we discovered a food she does NOT like. Gasp! Mushrooms. She tried one the other night from her salad, ate it, but did not want another. She kept telling/signing to us “mushroom” (mu-oo) “later”. lol… She’s also convinced she’s 5, not 2. She thinks it’s a hoot to tell us 5 when we ask her how old she is. Anything for a laugh.

Our Marley has always had one passion- animals. (in fact, there are about 50 tadpoles living in a tub on our back patio as I type…) But, this year, thanks to the aforementioned homeschool co-op, she has discovered a love for cooking. Chef Jessica (a local celebrity chef and good friend from church) teaches this class and it’s been wonderful. She has homework each week, like choose a fruit you’ve never eaten, try it and describe it (M chose star fruit); or take a recipe made in class, make changes, and cook/make it for your family. Her latest one was a meatball recipe. She was told to change it up, make them, and bring the recipe to class. I helped her a little, and we came up with Marley’s Marvelous Italian Meatballs. They’re GOOD. We had them for dinner a while back, and then M (shown here) made 50 of them for our last weekend’s company. You really should get the recipe :) If she’ll share.

If only this was smell-a-blog. This is a bloom from my patio lemon tree. I’ve had it for years, and honestly have only gotten a handful of lemons from it (must be doing something wrong…). But, the smell of these amazing blooms is enough to make me happy. Have you smelled these before? I wish I could bottle it and dab it behind my ears…

Don’t you love this shot of Ethan? Abbey took it and I swiped it from her to use here. What’s EJ been up to? Guitar. All guitar, all the time. Plays it constantly (much to his siblings despair). I love to hear him. I grew up listening to my dad play, so it brings back sweet memories of having live music in the house. He’s taking guitar from – yes, again – homeschool co-op. Ian, his instructor, is fantastic and says Ethan is doing really well. He’ll move him up to intermediate next year. Ethan’s favorite thing to do is think of a song he wants to learn, google it for the chords, print it, and give it a try. It cracks me up…he’ll look at the chords and say “hmmmm…this looks easy, except for that B minor”. He’s already talkin’ the talk. I love that he loves music (remember, he takes piano, too) and truly hope he sticks with it.

Wow, blogged your ear off, right? Hope you enjoyed (if you’re still reading…) hearing about our fantastically low-key spring break :)

I wanted you to know about this publication I’m a part of called Serious.Life Magazine. They just published a new issue, and I am in their Featured Blog Directory. It’s a very high quality magazine… you’ll really like it.

The magazine includes a lot of great content from bloggers you’ll appreciate, as well as great features, photos and other content. The magazine is owned and published by a family who have seven kids, three adopted and one who has Leukemia (www.riggsfamilyblog.com). The magazine gives away a bunch of ads to charities and ministries. Besides great articles on interesting people, there is a lot about family, adoption, personal finance, spiritual life, humor… all sorts of “life” topics.

Again, the subscription is FREE, and I know you’ll enjoy the magazine, so take a minute to check it out and sign up to get future issues.
Just click on the badge to the right, under our verse of the day…it’ll take you right to the magazine!