County Fair, Part 2

Back on the slide.

Slide.  Again.

Getting ready to ride a Dizzy Dragon.  I wasn't so sure Ben would dig this.

The faster Mike made the car spin, the happier Ben was.  They were definitely the fastest-spinning car.

After the spinning dragon, I shouldn't have been surprised that Ben wanted to ride the Crazy Bus.

Ready for another go.  Someday, he's gonna loooove some rollercoasters.

We looked on while the guys rode the carousel again.

A play area where parents weren't allowed.  Ben isn't real keen on climbing things, especially these rope/net/ladder thingies.  It took him a few tries and some slow climbing, but he got pretty confident by the end.

Proud of himself after the climbing, heading to the exit slide.

Yeah, that's right: deep-fried Oreos.  Can't tell it's an Oreo until you bite it, so Mike thought Ben might not want to try it.  I pointed out that they're covered in powdered sugar.  Ben would eat barbed wire if it was covered in powdered sugar.

Apparently Mommy's not supposed to eat any of them.  Seriously, Ben wanted to take mine.

See the upside-down pacifier?  And the grumpy face?  Maddy is DONE.  That was our cue to go home.

Peek-a-boo Burrito

When our family eats dinner in the dining room, I put Maddy on a blanket on the floor near us. One night she grabbed the edge of the blanket, rolled from one end to the other, and completely wrapped herself up in the blanket on purpose. I looked down and saw that even her face was covered by the blanket and then realized she was quietly waiting for someone to say, "Where's Madeline?" She loves playing peek-a-boo.

Maddy in Cincinnati

Yesterday we drove Madeline to her first appointment at Cincinnati Children's Hospital to be evaluated by a genetics doctor who specializes in dwarfism.  She loved being in the hospital: new sights, bright colors, and loads of attention.

I wish our kids were this happy at every doctor's appointment.

First we met with a genetic counselor who took Madeline's history.  Then we waited for Dr. T to come in...and Maddy rolled around on the exam table.  It was nice to be able to focus so much on her instead of having to divide our attention between the two kids.

It was such a relief to meet with a doctor who has seen patients like Maddy many times.  Dr. T was great - he took time to talk with us and answer all of our questions.  In a nutshell, he said that Maddy's doing great and will be referred to other specialists for evaluation, just like his other achon patients.  But she does have the beginnings of kyphosis (an outward curve in her lower back) and there are things we can do to keep it from getting worse.  He gave us a lot of information on what to expect over the next couple of years. 

Here's a rundown of what we discussed about the care she'll be receiving:

• She'll see a neurosurgeon (at the same hospital) when she turns one year old.  The neurosurgeon will check for hydrocephalus and evaluate her foramen magnum (the opening at the base of the skull).  If that opening is too narrow, it could compress the spinal cord and it would require surgery.  But she had an MRI when she was a newborn that showed she had a good amount of space.  She may have an MRI when she is a year or two old to see if there have been any changes.
• She'll see an ear, nose and throat doctor to check for fluid in her ears.  Dr. T said the ENT docs at Dayton's Chilren's should be able to take care of that.  If they find that fluid is getting trapped in her ear canals, she'd have to have tubes put in and possibly have her adenoids and tonsils taken out.  That's to avoid ear infections as well as hearing and speech problems.
• She'll see on orthopedic doctor, at Cincinnati, in three or four months, around the time she turns one year old.  That doctor will check her spine and possibly get a baseline spine x-ray.  If Maddy's kyphosis gets worse, we might have to put her in a brace, something she'd have to wore almost all day long for many months.  And if even that didn't work, they'd consider surgery.  There's no way to know yet if we'll have to resort to those measures, but it's good motivation to do what we can now to keep her spine as straight as possible.
• Her regular pediatrician can also check her spine and hips at her regular checkups.
• He doesn't condone or condemn physical/occupational therapy and it's up to us what we do. He said there's no great advantage to putting her through therapy. If we decide to proceed with it, we should make sure the therapists don't push her to reach milestones. Therapy should be more about watching her for problems, like with her spine.

He also gave us some tips and hints about what to look out for with her development.  She's double-jointed so she's really flexible, and if we hear a popping sound from her hips it's nothing to be worried about, as long as she's not in pain.  When she starts crawling she might do a "wheelbarrow crawl" and drag her head on the ground in front of her.  She might sit up somewhere between 12-18 months of age but that's just a ballpark guess.  When she's ready to sit up we should place items high up to enourage her to reach and sit up and keep her spine straight instead of slouching.

Her spine is the most pressing concern right now, and kyphosis is really common in achon babies.  Dr. T said it will get worse until she stands, somewhere around 18 months, and then it will start to get better.  He said her head is like a bowling ball sitting on top of her spine.  It's very important for us to support her back and either keep her flat on her back or sitting up straight with lots of support, no slouching.  When she's in her infant car seat, we can roll up a towel and place it behind her back for support.  And of course we should keep her rear-facing.  Even when we're holding her in our arms, we need to always keep a hand pressed against the part of her spine that bulges out.  That's going to take some practice...

At then end of the visit, Dr. T asked if we'd like to get in touch with the families of other LP kids in the area.  I was kind of hoping to meet other families with achon babies at some point, but Dr. T said that there was a wave of kids all born around the same time several years ago and they're all older now, plus they get together on their own and aren't very involved with LPA anymore.  We did meet with several families at an LPA meeting last month that I hope to see again in the coming months.  After our appointment was over we met up with someone we met through LPA who also works at the hospital and got some great advice from him.  I think I can speak for Mike when I say that we're really happy to be getting medical care and social support here.

Arriving in Dayton

We drove to the Dayton area three weeks ago and spent the first five nights in an extended-stay hotel.  It had a bedroom, living area and kitchenette, and we got to keep the cat with us (for a fee, of course).  It wasn't ideal but was so much better than a basic hotel room, even with the extra cost.

Mike had some inprocessing and other base things to do the first few days, and then we house-hunted with a realtor (and both kids) for three days.  Neither our adventures in real estate nor being stuck in a hotel pleased the kids.  We did find a house, but we can't move in until Oct 1st...more on that later. 

We explored the area a little and found some shopping areas.  After spending two years in Germany, I really appreciate all the stores in the states.  Yay, Target!  I never thought I'd appreciate being in a consumer society so much.  Here, Mike and Ben found the 3D TV demo in Best Buy.

Once there was a spot available on base, we got to move into temporary lodging.  It's great: two bedrooms, full kitchen, living room, and a washer and dryer.  I can do laundry whenever I want!  Hey, it's the little things.  Availability for these rooms is limited, and Mike has to go back every so often to see if we can extend our stay.  We'll be here for another 2-3 weeks.  If we're super lucky we can extend again.  Oh, and this isn't free...we get so many days paid for, and the rest is up to us.

Since the whole point of this short-notice move was to get medical support for Madeline, we got the ball rolling by taking her to see her base pediatrician right away.  Ben reluctantly tagged along.

Sesame Street on my iPod kept him occupied for 2.5 minutes.

The doctor we saw is great.  She signed off on the referral to see dwarfism specialists in Cincinnati later this week, and she also set up referrals for both physical therapy and occupational therapy.  Plus Maddy's having some eating issues - she eats very small amounts and often throws up anything but formula - so she sent us off-base for some tests.

Here's Ben at Dayton Children's while Maddy was having an upper GI.  It was kind of neat being in a children's hospital where everything's tailored to kids.  We'll be going back soon to see a pediatric GI doc because we still don't know why Maddy's not eating normally.

We dragged Ben along to do a lot of boring stuff.  So we tried finding some playgrounds where he could blow off steam.  Yeah.  The base, while huge and boasting a ginormous golf course, doesn't have any functioning playgrounds right now.  But before we could hunt down one within driving distance, we found this play area in the local mall.  Score!  We thought it was kind of lame...and Ben thought it was AWESOME.  He can run, play, and badger other kids.  It's all he's ever wanted.  Besides his own iPad.

Nine Months Old

Maddy is nine months old today!  This month has been a whirwind.

She has spent the last month sleeping in this portable bed.  With us moving around so much, napping hasn't been as easy as it used to be.  She still wakes up 3-5 times each night to eat or find her pacifier.

She has given us her share of grumpy faces lately.  This one was after an upper GI to figure out way she can't hold down any solids (cereal or pureed baby food) lately.  And she's been less than thrilled about all the hours she had to spent in her car seat.  Plus she's been strapped into this reclining stroller a lot.

So it was a good month for her to develop her sense of humor.  She loves pulling blankets big and small over her face to play peekaboo.  It's truly precious.

She now also prefers to be carried like this so she sees everything upside down.  This is not a very comfortable position for whoever's carrying her.  She loves being mobile.  She's still not crawling but she gets where she needs to go by pivoting and rolling.

Her new favorite silly face.  While doing this she exhales loudly through her nose.  Such a goofball.

Her cuteness has even won Ben over.  He will do just about anything to make her smile.  Here he is shaking his head back and forth, which for some reason seems to amuse both of them.  It's so neat to see them starting to play with each other.

Aunt Becki, Uncle Jim, & Emily

Recap: We flew from Germany to Baltimore, stayed in Elizabethtown, PA, and then went to Binghamton, NY.  From there we drove to Pittsburgh to stay at Uncle Jim and Aunt  Becki's house for five days.  It was awesome.  It was like home away from home, and it was so much fun to hang out with them.

Though she tried, Madeline couldn't resist Aunt Becki's charm.  

Both of the kids had a blast with Emily.  She really had a way with them.  Ben still asks us when he can play games with Emily again.

Ben loved the backyard pool.  Mike moved far from the pool steps, and Ben kicked his way out to him. 

Every once in a while, for no apparent reason, Ben would get out, run to this fountain, and stick his finger in the water.  Then right back in the pool he went.    

Maddy's designated blanket for the kitchen floor.

Saturday morning brownies :)  Ben had sooo much fun making and eating these.

Aunt Becki treated Ben and Maddy to their own pillow pets.  Maddy was tickled by her purple ladybug. 

Ben "helping" Uncle Jim fix the deck.

Ben's special makeshift bed in his own room.  He was pretty excited about it.

We got showered with love, attention, clean laundry, free internet, and Dairy Queen while we were there.  It was hard to leave.  But we'll be back to bug them again before too long - it's a mere 4.5-hour drive from Dayton.

Visiting Gram

After our week in Elizabethtown, we drove up to Binghamton, NY to visit Mike's grandmother.

At the park.  Gram got lots of smiles from Madeline, but Maddy still wouldn't let Gram hold her without crying.  And Gram is kind of a baby-whisperer: all babies love Gram!  Maddy must not have gotten the memo.

Day 1 of the carousel in the park.  We tried calling it the merry-go-round but Ben kept calling it the "macaroni round."

This trip was the first time Gram got to see Maddy.

Day 2 at the carousel. Ben waited patiently for a chance to get on the ride, then stayed on for a long, long time. 

This carousel is so neat.  It's been around for generations and is free to the public.  Gram was a kid when it was being built.

Every time the ride stopped, Ben picked a different horse.  Or dog, in this case.  Also, do you know how hard it is to take a decent picture of a moving carousel while standing outside a chain-link fence?

Check out the bandages on Ben's knee.  He had two more on the other knee.  He kept falling and scraping his knees on the walkway to the carousel.  The silver lining was that he got to wear four Cars band-aids at once.  

 

Then we headed to Mike and Donna's house for a cookout.  They had an awesome house with a great deck and big pool.  Again, Maddy was fine as long as she was in the shade. 

Mike helping Ben "swim" with his brand-new floaties.  Let me see if I can explain the family relation: this Mike was the cousin of my husband Mike's mom.

Taken from the deck.

Maddy was sooo good. She loved lying on the deck because it was shaded and had a ceiling fan.  And Mike's cousin Sharon kept her entertained.  I regret I didn't get any pictures of that.

Ben making a play for Daddy's beer can.

 

All tuckered out at the end of the day.  It was so nice getting to hang out with Mike's family members who we rarely get to see.  Now that we're back in the states, hopefully we'll get to see more of them.