Madeline's Medical Stuff

The whole point of us moving back to the states was to get Maddy medical care, so we were expecting to have lots more appointments and tests.  Here's what's being going on since her appointment with the specialist in Cincinnati last month...

Dr. T had told us to see an ENT in Dayton because it's so common for achon babies to have ear problems.  A few weeks ago we saw Dr. M in the base clinic.  At first he didn't understand why Maddy was even being seen by him because she didn't seem to have many symptoms that would require his care.  But then she had several tests in audiology.  Turns out that Maddy had fluid in one ear, and was about to have fluid in the other one.  Her hearing was somewhat impaired at the time of the hearing test, and she was having trouble hearing low-frequency sounds.  Though she never showed signs of an ear infection, she does sometimes tug at her ears, probably because of the fluid.  Bottom line: she needs tubes.  Dr. M said it wasn't an emergency, but urgent enough that he wanted the procedure scheduled in about a month.  Unfortunately the knucklehead gentleman who scheduled it screwed up and is now trying to push her surgery date to the end of October.  *update: surgery is 4 days from now..the same day we get our household goods delivered and were supposed to move into our house*  Since she's just getting tubes, she'll only need a face mask to administer gas during the procedure.  The whole thing should take half an hour.  If she ends up needing another set of tubes in the future, that's when they'd take her adenoids out.  That's the surgery that requires full anesthesia, and that's where achon kids require special attention and should ideally be operated on by a surgeon familiar with achondroplasia.  We'll cross that bridge when we come to it.  Also, Dr. M looked in her throat and said her tonsils are already enlarged and will probably have to be taken out when she gets a little older.

Since she got the diagnosis of kyphosis (heh, rhyming) we've been extra careful in holding Maddy and supporting the bump in her back.  We also started taking her to both occupational and physical therapy, each for one hour a week.  Therapy is controversial for achon babies because a) some people say there's no need for therapy, these babies will develop in their own time, and b) therapists who push kids too hard to meet milestones, especially milestones designed for average-height kids, can actually do more harm than good.  Dr. T had told us we should do whatever we wanted with therapy, but to beware of pushy therapists who don't understand Maddy's timeline and limitations, especially since she has back problems and should not do some things like sitting unsupported.  Well, I managed to find the kind of physical therapist that we were trying to avoid.  He was setting inappropriate goals for Maddy, seemed to ignore me the several times I told him that she shouldn't lean forward or sit unsupported, and just didn't have a good way of interacting with Maddy.  So after three sessions and a discussion with Maddy's base pediatrician, we put PT on hold until after she turns one and we can talk more with Dr. T.  What's really awkward is that the occupational therapist is really great, but she works for the same therapy group as the PT we just quit.  I see some tense moments in the future...

Maddy's back and ear problems are related to her condition, but she's been having eating problems that have nothing to do with achondroplasia.  For months she couldn't hold down more than an ounce of pureed baby food once a day, and she ate formula around the clock.  Last month the pediatrician gave us a referral for her to be seen by the pediatric GI doctor at the local children's hospital, and we'll see him tomorrow.  In the last few weeks her eating has improved - she is up to stage 2 foods (combination foods, some slightly thicker) twice a day, up to 2 ounces at a time.  She still has two bottles at night, but that's an improvement.  She still won't eat more than 4 ounces of formula in one (very slow) feeding but I've heard that some babies are just that way.  The pediatrician is still hoping that this is a stage that Maddy won't be in forever.  She said that if the GI doc is concerned for some reason, he might want to do a scope...and that means anesthesia.  So let's all cross our fingers and hope it's just a stage.

Ben's Medical Stuff

So the last two months have been a jumbled mess of medical issues and appointments for both kids.  Here's what's been happening with Ben:

A few weeks ago Ben seemed to be coming down with a bug or something.  He was coughing a lot and wheezed a little, and he was very lethargic (very unlike him).  We kept him home from school.  The next morning he wasn't any better, so we took him to the base peds clinic.  The doctor didn't like how his lungs sounded and had him get a breathing treatment.  His oxygen levels were a little better and he did another treatment.  Right after that one, he puked.  The doctor said that was good, that a mucus plug was dislodged and he'd feel a little better.  The doctor was pretty sure it was asthma but wasn't sure what triggered it.  It could be this particularly bad allergy season in Ohio, or maybe that we had stayed with friends over that weekend who had multiple furry pets, or maybe all of the above.  She said it was a good thing we brought him in because if we hadn't he would have ended up in the ER later.  Scary.  For the next week we treated Ben with various inhaled meds and a liquid med including a steroid (that was fun) and Ben went back to the clinic every couple days.  Right now he gets inhaled meds twice a day.  Last week he got a peds panel skin test at the allergist showing that he's not allergic to dust mites, but he's definitely allergic to cats and dogs.  The allergist suggested we get rid of our cat.

That was just the beginning of his allergy problems.  Ben has never wanted to eat anything with peanuts or peanut butter in it.  But a couple weeks after we got to Dayton and were staying on base, Ben ate a single Reese's Piece candy and did not react well.  He compained of feeling "yucky," kept scratching at his throat, then threw up.  Then red spots developed on his chin, chest and legs.  Luckily we were two blocks away from the ER on base.  His symptoms had pretty much disappeared by the time the doctor saw him.  The doc said it was a possible allergic reaction and sent us home with an epi-pen.  Ben saw the allergist last week and got a skin test that confirmed that he is allergic to peanuts.  We weren't totally surprised, because Mike's dad has been allergic to peanuts since childhood.  (Mike's dad also had asthma as a child but grew out of it.)  Thankfully, Ben's preschool classroom is already a peanut-free room.  Ben is super cautious of eating peanuts again so we don't have to worry about him intentionally eating something he shouldn't.  Still researching all the many foods that he needs to avoid, though.

So that's the gist of Ben's latest health concerns.  We're also having problems with him "holding it in" (not wanting to go to the potty or even in his diaper) but that's another story.  Next up: Maddy's medical stuff...

Young's Dairy Farm

Last weekend we drove to Young's Dairy Farm to take advantage of the beautiful weather and get the kids some fresh air.

Ben's getting pretty good at feeding goats at petting zoos.

There was a bouncy house for the little kids, for a small fee.  There was also a play area with slides, trikes, and bales of hay.  He spent all of his time in the bouncy house.

We just happened to be there the weekend that the annual Wool Gathering was happening.  There were lots of booths with vendors selling wool, yarn, and handmade items.  Pretty neat.  Plus Ben got to see some alpacas.

Here he's holding the lollipop drum that Daddy bought for him.

After seeing the sights we had lunch at the farm's restaurant.  I had to take a picture of Ben eating a grilled cheese sandwich so I'd have proof, in case it never happened again.  But he's eaten several sandwiches this past week.  Ben hasn't been a big fan of combination foods until recently.

Mmm, ice cream.  We were told we couldn't visit the dairy farm without trying some.  It was a happy surprise when Ben found out he could eat the sugar cone.

Maddy didn't care that she couldn't have any ice cream.  She was quite content to chew on a straw and hum into it.  We might be going back in October to go through a corn maze and pick some pumpkins.

Ten Months Old

Miss Maddy Rose is ten months old today.

She is going to start crawling any day now.  Until then, she manages to get where she wants to go through a series of wiggles.

Here she's squirming toward a computer cord, one of her favorite foods.

She spents lots of time on her tummy.  There's so much to see, like Ben's toys.

She is easily distracted from being upset (see crocodile tear on left cheek) by cool stuff like the camera.

Even though she can't crawl, she can make her way through rooms and hallways at an astounding speed.

She got her first two chompers this month.

I gave her a pot and spoon to play with, thinking she'd bang the pot with the spoon.  She didn't.  She picked up the pot with her feet and hands, then bit it.  Like nails on a chalkboard.

Sometimes she puts things in her mouth that are actual food.  She's slowly getting better with eating "solid" foods like stage 1 pears.  She can now eat half a jar, twice a day.  Any more than that and she pukes.  Still no more than 4 ounces of formula at a time.  And she's down to two bottles during the night.  Other than getting hungry during the night, she's a good sleeper.

County Fair, Part 1

 A couple of weekends ago the four of us headed into Dayton for the Montgomery County Fair.  The last time Ben was at an American-style fair was when he was a baby in Georgia.  He started out by petting some piglets.

 The buttered and grilled corn on the cob was a little too slick for Ben to hold, so I had the privilege of being the cornholder while he ate.  We all shared that bucket o' fries.

 Maddy looks like she's gonna get blown away here.  It was more her hair than the wind.

 There was a little petting zoo with a bunch of goats...and a pretty pushy camel.

 Ben got to distribute two handfuls of food.  He doesn't pull his hand away like he used to.

 Maddy enjoying the cool, overcast day by taking a nap.

 We bought one of those tickets for Ben that gave him unlimited rides.  At first we thought it was a mistake...how many rides would he possibly want to go on?  Answer: a handful, over and over and over.  That ticket was totally worth it.

 Sure, he liked riding in the car.  But then he saw...

 ...THE FUN SLIDE.  It must look more like a slide of terror to a 3-yr-old, but Ben insisted.  So Mike and Ben slid down together.  And Ben was THRILLED.

He was so thrilled that he couldn't stop himself from jumping up and down while waiting in line to go down the slide again.

Next up, in Part 2: Ben goes on the slide again.  I lost track of how many times.

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.