The Maas Family

Lily was baptized today.  Nahnee, ‘Ramma, Godmother/Great Aunt Judy and Great Uncle Bruce were in town, and we really enjoyed their visit.  Everyone got their fill of t-ball as both David and Max played Saturday morning.  David’s team won their game (first win of the season!), and David had some really nice defensive plays.  One of his coaches told me at practice last week that they want to give David a nickname.  Floyd.  For Pink Floyd.  Because David is a wall when he plays centerfield.  Nothing gets past him.  And really, is there any kind of nickname a 6 year old would appreciate more than one related to an album from the ’70s that requires 3-4 sentences to explain?  It’s very nice that his coaches think he’s doing a good job and even nicer that despite having mustered only one win this season, he is having the best time.

Speaking of having the best time, here is Max in action at his game Saturday.  He told Kevin earlier today, “I not scared.  I love stuff!”  And if that doesn’t sum up Max, I don’t know what does.

Later that afternoon, we spent some time at Millennium Park.

Lily continues to copy everything her brothers do.  Check out her gaping mouth, just like David’s, in the first picture.

This was Lily’s first go at the Crown Fountains, and she absolutely loved it.

The main event was this morning.  As I have mentioned, we usually attend our church’s Wiggle Worship service.  It is geared for families with young children.  It is an abbreviated version and significantly less formal version of the grown up service at 10:30 complete with Bible lesson, sermon, prayers and Communion prepared by enthusiastic grubby little hands.  Our priest does a pretty fantastic job of explaining not just the lessons but the ins and outs of the service in a way that the kids understand, and–here’s the thing–they love it.  My kids literally run into church on Sundays.  Run full speed.  So anyway, we decided that we would have Lily baptized at Wiggle Worship.  Less formal and a lot more chaotic, but more comfortable and easier for the kids to understand.  Paris did a lovely job, and Lily grinned as Paris poured the water over her little head.

We chose my Aunt Judy and Kevin’s Uncle Roger as Lily’s godparents.  We know we have the A-team as they are our godparents, and look how great Kevin and I turned out.

A big thank you to Rog and Barb, Aunt Judy and Uncle Bruce and to everyone who shared today with us!

We discovered yesterday after we’d already left the house that our camera battery was dead, so I have no pictures of Max’s t-ball class, David’s t-ball practice or our fun trip to the planetarium with Mr. Adam and Miss Laura.  I just wanted to give a superquick summary of all the kids’ various appointments this week.

• Lily has normal hearing.
• Lily’s eardrums and ear tubes are great.
• Early intervention doesn’t want to give Lily any speech therapy.  They stopped testing her at the 24 month level for gross motor, fine motor, social and receptive language.  The developmental therapist said, “I love her independence!”  Sometimes I do, too.  Other times…  Anyway, she is less than 30% delayed in her expressive language after just 3 months of English, so in spite of her cleft which puts her at risk for problems with speech, they just want to check in again in a few months.
• No cavities for either boy at the dentist.
• Lily has a hole, but it’s not in her palate behind her teeth.  It’s beside her teeth in the gumline.  (I swear it moved since the last time I looked in there.)  This is *huge* because it means the hole is in the part of her mouth that hasn’t actually been repaired yet, and it will get closed with her bone graft in a few years.  No extra surgery between now and then.  Her surgeon remains really pleased with how her palate has healed.  Since EI wasn’t particularly helpful in offering suggestions for Lily’s speech, we are going to have an evaluation through the speech people who work with cleft clinic to look specifically at resonance–basically whether the air is coming out of her mouth or her nose when she speaks–with the idea that they will give us a specific plan for home and then reassess Lily when she’s talking a little bit more.

Lily followed up with her surgeon today, and she was very pleased with how her palate was healing.  We go back in a month to see if the muscles in there are starting to work.  In the mean time, Lily has the all clear to eat and drink whatever she desires with the utensils of her choice.  She is currently celebrating by dumping a pineapple float (vanilla ice cream in pineapple juice–you must try it!) down her shirt with a spoon.

I have only one picture to share today, but it’s a good one.  Kevin’s birthday was Monday.  Here he is with the kids and his birthday dessert of choice, spatula bars (named after the first time I made them and accidentally baked the tip of a little spatula in them).

It took more than a week, but I think we finally have our Lily back.  She has been grumpy.  She has been waking up seven times a night and very difficult to console.  Meals have been hit or miss, which I think we all know is very uncharacteristic.  She has been clingy and hasn’t played or laughed much.  We saw our first little glimmers Wednesday night.  She crawled into bed and snuggled up happily next to David.  The pink was back in her cheeks, and she was giggling.

She still had a couple of rough days (and nights ahead of her), but Friday night she slept well for the first time since surgery.  She woke up twice but went back down easily.  Saturday she was in a really good mood and ate great, and she hasn’t looked back since.  She is back to giving us the stink eye for laughs and trying to learn to make shooting noises.  She is off pain medicine now, and her palate is looking more like the roof of someone’s mouth and less like a postapocalyptic  hellscape.  This likely has a lot to do with her improved disposition.

As an aside, we have been through four cans of squirty whipped cream in about five days.  I anticipate we will be entering Lily is some sort of twelve step program.

In other news, Max is now a speech therapy graduate as his articulation is age appropriate.  It was Dad’s Night at his preschool Thursday.  He has been waiting for this for weeks and complaining bitterly every day that, “It’s taking too long” for Dad’s Night to arrive. He has been very pirate focused recently and decided to wear his costume to Dad’s Night.

David is just the best big brother around.  He tells me a dozen times a day how much he loves Lily, and he has really been trying so hard to be helpful.  Without being told, he got Max a cup of water when he asked the other day and Kevin was busy.  He’s always running to other parts of the house to get me things I need while I’m pinned under a whining drooling child with a sore mouth.

I kicked off another fun stretch of working 3 of 4 weekends on Saturday, so Kevin took the kids to visit GG.  They had a nice visit.  They ate there, and, perhaps not surprisingly, Lily had a variety of soft diet options from which to choose.

Lily’s follow up appointment is Friday.  All indications are that her palate is healing well.  She’s feeling better, and food isn’t coming out of her nose.  We’ll see what her surgeon thinks and when she’s in the clear to eat as she pleases again.