handsful

In the playroom, waiting to be called to the pre-op area.

In pre-op, a few minutes after receiving the Versed medicine that makes her loose and carefree :)

About 4 hours later…

Kitty was with her the whole time.

Next day…still very out of it, in pain, and cranky. Still not wanting to drink anything unless we forced her to.  Somehow, she was released from the hospital anyway.

First day home…awake most of the day and drinking like a champ.

by last night, she was asking to be carried in the Ergo and fell right asleep.

Today…playing dress-up.  Only a little complaint of pain.  She was seriously cranky this afternoon, but we are glad to see her “personality” coming out.  Her nostril stent and nose stitches come out on Monday, and the lip stitches on Thursday.  She’ll be on a liquid/soft diet for about 3 weeks.   We’re all happy to be on this side of surgery.

Just a quick update on how today went for Miss Lainey.

We started the day absolutely SURE surgery would get cancelled.  She woke up coughing A LOT and sounded congested.  Randy even suggested we just call someone and tell them she’s too sick.  But, we went and amazingly as the morning went on, the coughing went away and the doctors cleared her for surgery.

She went in at 12:15pm.  Dr. G finally came to us about 3:45 and told us all went great, no complications, no surprises.  Praise God!

Lainey was moved to her room around 5pm.  She’s been sleeping on and off since then (mostly on) and honestly seems a little miffed about the whole situation.  Can’t say I blame her.  She has a sore mouth (which we’ve not seen the inside of yet), a bruised and swollen  ear (from where they took the cartilidge out), stitches in 3 places on her nose holding a wad of gauze in her nostril, and stitches above her lip.  I’d be having mood issues myself!

It’s 8:20pm now, Randy has gone downstairs to get us some dinner and then he’s heading home to be with the big kids.  I’ll stay here for the night, Randy will bring the kids to the hospital tomorrow.  She’s beginning to wake up more as the night goes on, so we’ll start giving her more water with the syringe (she’s had that once so far).  Today she’s allowed only clear liquids, tomorrow she can upgrade to full liquids.  Woo hoo :)

Seeing your child wheeled into surgery isn’t fun, and the tears came as usual.  I’m so thankful it’s over…her 3rd surgery in her 3 years.  With at least that many to come in her life.  Thank you to those who thought of us and prayed for us.

Hope to share a few pics tomorrow :)

This sweet face will change next week, when Lainey goes in for surgery.  Hopefully for the better, but I’ll actually miss the crooked nose and little imperfection above her lip.  Maybe the difference will be subtle…maybe big. 

The surgeon will also be closing the fistula that popped open from her last repair in May 08.  We are praying that this will greatly improve her ability to make speech sounds, drink from straws, and blow out birthday candles. 

Though we’re trying to prepare her for Wednesday, she’s pretty much oblivious…she was too young to remember her last surgery.  She’ll know that we’re going to the “doctor”, that she’ll wear a funny nightgown, and that the boo boo in her mouth will be fixed.  And, that we’ll be there every minute that we can.

The “ick” has hit our house, in the form of the flu.  Ethan is hardest hit, and his asthma makes it even worse.  Marley feels worse today than she did yesterday.  Payton dealt with some nausea and a headache today.  Abbey has some achiness, Lainey has had some digestive issues, and Randy and I have had a headache for two days.  We brought this home from NC, after our kids got together with their 12 cousins.  As of tonight (if I’m counting right), 13 of those 17 cousins have the flu.  Amazing :)

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 ;)

I’m gonna squeeze it in anyway :) 

At first, Randy and I had quite the struggle trying to figure out who to pull for in last weekend’s Steelers vs. Chargers game.  As you can see here:

Note the Steelers hat and Chargers jersey. 

Randy has been a Steelers fan ever since playing Pop Warner football as a kid as a Steeler.  But, Phillip Rivers is the Chargers QB, and we LOVE him…he was the quarterback of Randy’s college team NC State, so we always pull for the Chargers, too.  In the end, the team closest to our hearts did win and we’ll just look forward to watching Phillip play again next year. 

I shot this video on Tuesday so Marley could show off a little. It cracks me up to watch Lainey copy Marley.

I took my camera to Lainey’s speech therapy session today.  She loves Ms. Leah!

Shaving cream play…the goal is to have her practice vocalizing while playing, but she was so mesmerized by the stuff, she barely made a sound.  Okay, let’s try something else. 

I forgot what this little thing is called, but the top is soft rubber and it vibrates.  The plan is for her to put it on her mouth, for stimulation.  She sorta likes it and sorta hates it.  We’re working on it. 

That’s the way, girlie!

She tries SO hard to blow bubbles, but she usually ends up blowing from her nose.  I’d love suggestions from anyone with a cleft affected kiddo :)  Her nasal and oral cavities are still somewhat open because of a small fistula in the middle of her palate and her gumline is still open.  I assume that’s making it harder. 

Lainey is such a busy girl, she got a call right before going out to do a little shopping with Payton’s wallet.  And his hat and glasses.  That’s me checking schoolwork in the background.  Don’t tell Randy that Payton had his camera, he wouldn’t like that. 

Fun for a 2 year old.  Sitting under a desk, playing with a tissue.  Good times. 

Here we are today, at her follow-up appointment after having an ear infection last week.  Her ears healed quickly, but her cough came back last night (she had a cough last week, but it never developed into anything…we thought). 

Last night, we heard her wheezing a little and after playing hard she had a long coughing spell.  The pediatrician said she felt very tight, and had us do 2 neb treatments at the office…here, Marley is helping her.  She came with us, after finishing her schoolwork for the week already (you go, girl).  He wants those to continue every 4 hours during the day until the cough goes away.  We’re well versed in this procedure…all 3 of the triplets have varying degrees of asthma already.  Mine as well add one more. 

A little down-time after a stressful day…watching her other favorite “Marlee” on TV with her First Signs Baby Einstein video. 

I can see the light…Friday is coming.  We’re debating on either cleaning out the garage or going to the zoo.  Which do you think we’ll do?

See…anything and everything can function as a step stool.

Lainey had her in-home evaluation by our state’s Small Steps program.  She is eligible for services through them based on her cleft issues and will be in the program until she ages-out at 3 years old.  At that time, we’ll go back to private speech therapy.  We had the program coordinator, an occupational therapist, and a speech therapist come to do the evaluation.  Lainey was shy at first, but quickly warmed up to them…especially when they brought out a few toys and pictures.  Oh, and the cake sprinkles (used to test her fine motor skills) were a bit hit. 

So, this is what the play kitchen is for??

At the risk of sounding like a proud mama, she did amazingly well.  I believe the words brilliant, amazing, and precious were used…no kidding :)  They were extremely impressed with how far she’s come in 5 short months of hearing and being around the English language.  The speech therapist said her receptive language skills were wonderful, right on target if not above.  Her expressive language skills…and this one surprised me…are also on target.  How?  She only uses approximations for about 5 words?  The therapist explained that her use of sign language “counts” towards her expressive language, and she is beginning to put 2 signs together, like most 2 year olds put two spoken words together. 

Are you okay with this, mama?

After the evaluation was over, we discussed the short and long term goals for her therapy.  Basically, we’re going to work on her using a straw, increasing her vocalizations, and increasing her use of words or approximations of words.  Eventually, she’ll need therapy for certain sounds, but for now the focus is turning her language skills into speech skills.  We are so happy with where she is, so soon after joining us.  Her capacity for learning just amazes us, she’s drinking in everything she hears, sees, and experiences.  She’s definitely making up for lost time.  :)