handsful

Excuse the goofy shot.  He was being…well, goofy.  We had to bring his car seat up to the room to make sure his cast fit.  No problem there.

The doctors made their rounds EARLY.  7:10am to be exact.  He was given the green light to go home, so we spent the morning having breakfast and packing up.

He got his cast “tricked out” before we left.  They padded the edges with mole skin and then he chose a camo wrap.  He’s in very little pain, and is already scooting around on his bottom a little.

We are amazed that, less than 24hrs from his surgery, we were on the way home.  Our experiences at both the R McD house and Shriners in Greenville, SC could not have been any better…the staff, doctors, everyone was so caring.  We feel very comfortable there already.  Good thing, since we’ll be spending a good deal of time there off and on for a lot of years!

I think I may make Dylan a paper chain, so he can see how much time there is until he gets his cast off.  I need something to help him visualize these steps to getting his “new leg”.   We’re thankful that this particular step is behind him :)

Morning of surgery, snuggling with his panda pillow (thanks, Sandi, he LOVES it…)

While Randy feeds Dylan his dinner, I’m sitting in a lovely, open area with an indoor waterfall behind me, catching everyone up on Dylan’s day.

Surgery was scheduled for 10:45, so we arrived at 9am.  Dylan was in good spirits, until we put his gown on him.  He got kinda quiet at that point, wondering what was going on.  We could still make him laugh, though.

He took us loopy medicine, but only got wobbly.  No funny stories to tell…rats.  As a reward for taking the medicine (which we’ve heard tastes just yucky), the nurse wheeled in this huge wagon and told him to choose a toy.  It looked like Christmas in that wagon!  He chose a doctor kit, that he’s already gotten a lot of use out of.  He gave every nurse and doctor that came in a shot!

The time came to wheel him away.  Randy said a prayer over him, I kissed his little foot, and off he went.  I managed to hold my tears in.

We were told it would take 1 1/2 hours, so we went to the waiting room and then grabbed lunch from the cafeteria and brought it back.  Only about 40min into it, the surgeon walks in.  Huh?  It was a breeze, no complications, easy-peasy.   We were thrilled to hear that he’d done so well.

feeding him ice chips

He’s been awake all day, transitioning from ice chips to juice to crackers and now to dinner.  He’s literally eating and drinking as much as we give him.  And, wearing out the portable urinal.  Maybe this will push him over the 27lb mark?  Yes, that’s STILL what he weighed yesterday at his pre-op appt.

We’re told that, if he continues to do well, he’ll be discharged tomorrow.  Great news!  He’s beginning to have some pain in his leg, but they’re giving him medicine.  After dinner, he gets to leave the bed and we’ll pull him around in the wagon.

* added next day…after our walk, he decided to hang out in the wagon and watch a movie.  Looks like a great set-up, huh?

We left the house this morning at 7:15, arriving at our appt. at Shriners in Greenville, SC right on time.  We saw the child life specialist, nurses, anesthesiologist, surgeons, pain management specialist, and prosthetist.  Everyone was SO nice and welcoming, we feel very well taken care of here.  He received a stuffed dog at admission, his choice of Build-a-Bear (he chose the guy dressed up to go fishing…Ethan, you’ll love it), and then received another bear at the R McD house later on!

Some points of interest:

The surgeon said he would call Dylan’s deformity either a tibial deficiency or transverse deficiency.

He won’t have to cut through bone (GOOD news!), but will cut through the (fixed) joint instead.  Much easier, less pain, faster healing.

His surgery is scheduled for 10:45am and should take about 1 1/2hrs.  They expect he’ll only be in the hosp for 1 night.

They will give him a caudal block, which is similar to a spinal block – this will numb him completely from the belly down.  It’s given by injection at the sacral gap above his bottom.  This will last for 8 hours after surgery, which they say will help reduce the risk of phantom limb pain.  They will give him this when he’s already asleep.

He will come out of surgery already casted (his short leg completely incased in the cast), which will stay on for about 3-4 weeks.

After the cast is removed, he’ll be in a pressure sock (to help bring down any residual swelling) for another 2 weeks.

After that, work can begin on making his prosthetic leg!!

After his pre-op, we drove around downtown Greenville and were surprised to see how nice it is.  We parked and walked around, had lunch, and did a little shopping.  We then checked in at the R McD house, where we were given a tour and shown our room.  It’s actually a suite, with a living area, bath, and bedroom.

playroom…he’s loving the train table.

This place is wonderful, I can’t say enough about it.  Volunteers in the community bring a homemade dinner every night.  Tonight’s meal was provided by a baptist church, and we had mac n’ cheese, chicken patties, rolls, potato salad, sweet tea…all very good!  There is a huge pantry of food that we’re free to use, a great playroom and outdoor playset, big family room downstairs with TV (which, Randy is watching the b-ball playoffs right now), etc.  We’ve met some nice people staying here…one young man having surgery tomorrow right before Dylan’s and 2 families with pre-mature babies at the hospital beside Shriners.

Walking UP the slide.  There’s just nothing he can’t do.

he’s hopping so well lately!

daddy and Dylan slide races.

After dinner, we headed back out downtown for ice cream, then back to the room for Dylan’s bath (last one for 3-4 weeks!), and then it was off to bed for him.  He’s been asking all day to “go home”…I think he senses this is different and I expect him to be a little scared tomorrow.  We’ve talked about him going to the hospital, going night-night while they “fix” his leg, and then having a cast like last time.  (benefit of him breaking his leg in January is that body casts are BTDT for him…God does work in mysterious ways)   He asked for his new leg a few times today, and we keep trying to explain to him that other things have to happen first and THEN he’ll get his leg.  How do you explain time to a 3 year old?

Clean boy!

See you tomorrow with another update on our sweet guy.

On the way out the door, headed to the hospital.  She’s all smiles, but said she was a little nervous.

all gowned up.  Next, the woozy-inducing “pink medicine”

Checking out her arm tag.  I won’t post any pictures (or the video!) of her drug-induced state…suffice it to say that it made her very dizzy and VERY silly.  She said daddy had 3 eyes and mama had 2 mouths!

One hour later, and the surgery was over.  We were thrilled to hear that they were able to do the preferred procedure (sphincter pharyngoplasty) and it went off without any issues.  Yea!!  Here, she’s still quite out of it but waking up more and more.  She didn’t like me taking pictures!

So, I grabbed the camera when she was sleeping :)

Lainey had a few bites of pop-sicle and several sips of drinks.  The surgeon wasn’t too concerned that she take in very much that first day, and she had an IV.  She slept off and on most of the day.  Daddy stayed with Lainey that night, and I drove home around 9pm to stay with the other kids.  My mom was there, too, but I thought I had to take Abbey to her biology class in the morning.  Turns out,  my friend Sandi took care of that for me.  :)  So, I got up the next morning, took care of Dylan, and headed back to the hospital to see her.

And, Lainey was back!  No more grumpiness, in hardly any pain at all, and wanting to be up and about.  She was collecting quite a few stuffed animals at this point. She brought her puppy with her to the hospital, and then she got an elephant in pre-op, a teddy bear from the surgeon, and then another dog from special services.

They asked her what kinds of things she liked to play with, and they brought ALL of this.  Wow.  Later that afternoon, we visited a family on the same hall that we met the day before.  They adopted their little one from China a month ago, and were having her cleft lip repaired.  Such a doll!  And, our new friends are first-time parents, too.  :)

Around 4pm, we got the word that Lainey was being discharged!

On our way out, we had to check out the roof-top playground.  If it wasn’t wet, we would have stayed a while longer.  The view was really amazing!

This was taken yesterday, 2 days post-surgery.  She’s doing so well, only needs pain meds at night (and hardly needs them then, but I’m being cautious), and is very compliant with her liquid diet.  I’m pureeing everything and she’s eating it!

We got back for a follow-up next Friday.  No speech therapy for 6 weeks – she’ll actually be tested again at the hospital prior to beginning again to make sure the surgery was successful in action :)

We’re glad to have this surgery over with…now, we look ahead to Dylan’s.

Lainey girl with her puppy, joined by new friends elephant and teddy.

It’s going on midnight, and I’m TIRED.  Randy has the night shift at the hospital, and I drove home and will return in the morning.  So, this will be a short post about today.

Lainey is fun to watch after she takes the “pink medicine”.  It made her woozy, dizzy, extra-silly, and made her vision go loopy.  According to her, dada had 3 eyes and mama had 2 mouths.  Yes, I took video for proof.

Surgery went perfectly, no hitches, problems, or surprises.  Only took 1 hour.  Praise God.

The surgeon was able to do the procedure that she wanted to (sphincter pharyngoplasty) …meaning, Lainey had enough good muscle to work with and her carotid arteries weren’t in the way.  We’re very thrilled about this!

She’s been sleeping on and off all day, and only complaining about her throat a little bit.  No smiles yet…she’s a bit grumpy about the whole situation.  I think I would be too!  She’s taken some sips of drinks and maybe half a popsicle.  The doctor wasn’t concerned so much with how much she took in today, but we expect that she’ll begin to drink more tomorrow…especially, since that’s the test she’ll have to pass before she can go home.

Baptist hospital rocks!  Everyone has been wonderful, the food in the cafeteria was yummy (frozen yogurt!), and Lainey scored, not one, but TWO stuffed animals.  Her surgeon came by to check on her this afternoon, too.  That should be a given, but that never happened with her other surgeries in FL.

Thanks to all who prayed for her today, we are very thankful!

Our Lainey girl is going in for surgery tomorrow.  #4 in her young life, and it won’t be her last.  Ah, the joys of clefts :)

Tomorrow’s procedure will either be a sphincter pharyngoplasty or pharyngeal flap.  Both basically help to lengthen her soft palate (which, when studied a couple of months ago, is too short) by using existing tissue to make a sort of flap.  The flap will help to close off her nasal cavity for certain sounds, which will allow her to produce sounds that require a build up of air pressure (say a “b”…feel it?) AND will help decrease the nasality in her speech.

We have BIG hopes for this surgery.  Lainey is extremely speech delayed… she has only a small number of consonants which means her speech is mostly vowels.  So, she’s very hard to understand…she still signs quite a bit to help clarify what she’s saying and we still often can’t understand.  She gets frustrated (but, not as much as you’d think) and we get frustrated.  She’s 4 1/2 and her thoughts are becoming more complex.  She wants to be able to TALK to us, beyond the simple day-to-day things.  We so desire that, too.

Our prayer is that this surgery gives her the anatomy that she needs to make big progress in speech therapy.  We’re not naive, thinking she’ll come out of anesthesia with all these brand, new sounds.  We know there is much work to be done.  But, to know that nothing structural is holding her back will be such a blessing!

If you think of her tomorrow (12:30 EST), say a prayer?  Thanks :)

The norm for Lainey Q…drinking soup. 

How’s she doing? 

* sleeping restlessly, waking a handful of times a night crying. 

* waking up in…shall we say…a less than sunny disposition? 

* doing a wonderful impression of Jekyl.  Or Hyde.  Depends on the moment. 

* glad her nose stitches are out (ear and upper lip come out tomorrow). 

* tolerating her liquid/soft diet wonderfully…her favorite is “hot soup”.  Any kind. 

* wanting to be held.  A lot.  Mommy gets lots of snuggle time. 

* struggling with staying dry.  The nurse told us that lots of little ones regress after surgery.  It could also be because her diet is almost entirely liquid.  Either way, the washer is running…

* going through a lot these days.  But, like with anything she’s dealt with in her young life, she’ll come through it and be just fine.