Brother & Sister

 Ben may be a tad bit jealous of his sister because she gets so much attention, but he doesn't hold it against her.

And he loves playing with all his old baby toys.

 

 Madeline with her "deer in the headlights" look.  (for good reason)

 Ben playing the toy guitar like a violin.

Pretend naptime.

 When Momma tried to take a picture of Madeline, Ben tried to grab the camera.

My lap has been full of kids these days.

Three Months Old

Our sweet baby girl is three months old.  The "fourth trimester" is over.  She's technically not a newborn anymore, and I'm just a little bit sad about that.

 Then I look at this heartwarming smile and I'm happy again.

 She is so much more alert than she was just a few weeks ago.  She loves to kick those little legs, and she's amazed by everything around her.

 She is quick to smile and getting to be quite the "talker."  I told Mike we are going to have very expensive phone bills about 13 years from now.

 It tickles her when we use the burp cloth to wipe under her chin.

Our precious little angel.

Ben Goes to Preschool

 Ben recently starting going to preschool on a local military base.  I wasn't quick enough to get photos of him getting on the bus the first day so I got his reaction when he got home instead.

He was so excited to ride the "bus" which is really an 8-passenger van.  In fact, he was SO excited that every night before he went to sleep he'd ask if he could ride the bus the next day.

I did get a chance to take his picture on his second day.  Just as excited as on the first day.  Here's a short video of him getting on the bus with the help of the aide:

The preschool is 20 minutes away, which is why they send a bus for him.  For now he'll attend three mornings each week.  It's technically a special ed preschool but he was eligible for it because of his speech delays.  He used to get speech therapy a few times a month at home through early intervention services, but now he'll get speech therapy twice a week at school instead.  For the time being we'll keep sending him to the German kindergarten on the other weekdays.  He still enjoys going there (plus he can attend through the summer when the preschool is closed) but we really think his speech will improve by being with other English-speaking kids.  And he's having such a good time!  I love that he asks every day if he gets to go preschool.

Sleepy

Some of Madeline's naps over the last six or seven weeks...

Sweetheart

She is our little sweetheart.  I was trying to get a video of her "talking" to me...she wasn't in a chatty mood, but I got lots of smiles instead.

Tasty Fingers

This is from almost a month ago.

Madeline is way more interested in finger-sucking than Ben was.

Oops, missed the mark a bit.

We don't usually have this many things in her crib and she doesn't really nap in it yet anyway.

Sleep Study

Last week, Madeline and I spent the night at a children's clinic in Heidelberg (about an hour away) as part of a sleep study to determine whether she has sleep apnea.  She's not showing any signs of it at home, but it's common enough in babies with achondroplasia that our pediatrician wanted us to get it checked out.  It took two months to get an appointment.  We checked in around 4 pm and left around 8 am the next morning.  The doctor said he'd contact us that day if he noticed any obvious problems.  Otherwise, we'll get the results in a few weeks.

Sorry for this horrible picture, it's a photo of a photo from my cell phone.  The doctor hooked up about a dozen leads on Madeline, on her head/face/chin, chest,and abdomen.  Plus the little pulse ox monitor on her foot.  She had netting on her head to keep everything in place.  It was weird not to see her signature mohawk.  She also had a nasal cannula taped to her face to measure the pressure of her breath.  There was a camera set up to film the bassinet and my bed just beyond it.  Since she had just gotten her immunization shots that morning, she was nice and tired and slept most of the time.  At home, she naps in her pack 'n play and spends part of the night in a bassinet beside our bed, but most of the night she usually co-sleeps with me.  So for the sleep study, she started out in the hospital bassinet but got restless in the evening.  The doctor told me it was fine to bring Madeline into bed with me if she'd sleep better that way, so that's what I did.  But the night nurse got irritated that she couldn't see Madeline as well as when she was in the bassinet.  So I spent two hours in the middle of the night trying to get Maddy to sleep in that dang bassinet.  Didn't work.  The nurse faced it that she'd sleep better with me, and the whole point was to GET HER TO SLEEP (that would be the "sleep" part of "sleep study").  Madeline slept for the next four hours straight.  She woke up at exactly 7 am, and I was so ready to get out of there.  It was cold, the nurses weren't particularly nice or helpful, and many of the other babies on the ward were not as calm and sleepy as mine and spent much of the night screaming.  It took four trips up and down the hall to find a nurse who could unhook Madeline from all the wires and let us leave.

Waiting for freedom.  This little girl is such a sweetheart - even hooked up to all those wires, she was still smiling at her momma.  Oh, and that mesh cap was no match for her mohawk: by morning the cap was completely off.

The adhesive gunk that held two of the wires to her head.  It came off pretty easily with a lot of shampoo.  The doctor never called us, so we're hoping to get a good report in the mail in a couple weeks.  He said that since she hasn't shown any signs of sleep apnea so far (her lips never turn blue and we never notice her not breathing) that there's a good chance she's fine.  Part of why I like co-sleeping with her is that I feel like I'd notice if there was a problem with her breathing.  The cuddling doesn't hurt, either.

Checkup & Medical Stuff

Last week Madeline had her two-month checkup.  There’s a special set of growth charts for kids with achondroplasia that Dr. O uses to track Madeline’s height, weight and head circumference.  I always breathe a sigh of relief when they measure her head and say it’s not growing too fast.  Her height and weight are good too.  We went over how Madeline’s doing with the five areas of development.  She’s doing great with communication.  As Dr. O expected, she’s pretty far off with her gross motor skills and just a bit behind with fine motor skills.  So Dr. O put in a referral for someone from the early intervention office to evaluate Madeline and see if she could benefit from physical therapy.  Otherwise, we’ve got a happy, healthy baby – no signs of ear infections yet.  She also got a bunch of shots and was such a trooper: she cried for half a minute, then got back to giving everyone her sweet smiles.  And when I say "everyone," I mean the four other people in the immunizations room...it only took two of them to give the shots, but I think everyone there wanted to get a peek at Miss Maddy.  I think that kind of curiosity is something we'll have to get used to.

While I was I there, I told Dr. O that I had been asked some questions about whether there was anything that could be done to “fix” Madeline and that I felt silly for asking but felt obligated to bring it up.  Dr. O said that growth hormone really isn’t useful in cases of achondroplasia.  And as far as limb-lengthening procedures, she said it’s hypothetically possible for Madeline to someday have those surgeries and gain maybe a few inches of height but it’s controversial and it’s not a topic to bring up for many, many years.

This brings me to the topics I wrote about a couple weeks ago.  I wanted to give our friends and family information about Madeline’s condition – it’s rare enough that not many people have an understanding of what kids like her will be dealing with.  I think that knowledge is power, and I feel like discussing questions people might have now will help Madeline and the comfort level of the people in our lives in the long run.  But I think that information is a little tricky in the age of the internet.  Based on the small amount of research we have done over the last few months, and because we had gotten a couple of questions about whether Madeline would always be very short, I wrote that her height is what it is and that it can’t be changed.  However, that’s a very short, black-and-white answer.  I’d like to clear some things up.

• If you look online, you can find articles that discuss the use of human growth hormone on people with dwarfism that is NOT caused by endocrine problems.  However, this is controversial.  It is not mainstream, it has not been widely tested, and from what I’ve read and heard it hasn’t shown to be very effective.
• I was unclear about limb-lengthening procedures.  This is also a very controversial topic in the medical community and within the little people community.  I stated that Madeline could not be made taller by this method.  I should have said that, when she is old enough to decide for herself, she could theoretically go through this.  But odds are she would only gain a few inches of height.  Again, this is not mainstream, and I’m sure there are mountains of research and opinions on this out there.  I found one article that said a patient could end up being a whole foot taller after these procedures, but it didn’t state what all the articles I read did – that that’s probably an unreasonable expectation, and that these procedures can be very, very painful and may bring on medical problems that didn’t exist in the first place.
• Even if there were a procedure to magically make Madeline the height of an average person, she would still have dwarfism and all the other physical characteristics.  She’d still be at risk of ear infections, hearing loss, hydrocephaly, and back and ear problems.  My goal is to limit her medical issues, not add to them.

So here’s my point: we’re not seriously considering any procedures for Madeline that seem to us to be unnecessary.  I gave concise answers to the height questions because I wanted to make our stance clear and I don’t want people bugging us about it.  I’d rather people focus on accepting Madeline for who she is.  Achondroplasia is a condition, not an illness.  It is not something to be “fixed” as far as Mike and I are concerned.  Having said that, we still have a lot to learn and experience.  And we've been very, very lucky that the vast majority of people in our lives are so positive and supportive.  Okay, enough with this wordy post...I promise, more photos are coming soon.

Cabin Fever

 It's been a long, cold winter so we've been trying to stay busy at home.  Madeline's happy to sit in her musical bouncer for a while.  Ben's more of a challenge.

 Keeping warm in Daddy's sweatshirt.

 Trying on Daddy's boots.  He likes to try on my shoes too, but I'll keep those photos to myself for now :)

 I must confess that SesameStreet.org is a frequent babysitter in our house since the baby came along.  At least he's learning a lot from it.

 Being brave enough to bundle up and kick the ball around in the backyard...for all of three minutes.

 My friend's daughter getting some babysitting practice and helping me out while I caught up on some housework.  Both of the kids love her...Maddy doesn't smile for just anyone!

A great way to spend a cold, snowy day is snuggling on the couch.

Toy Story "Jabamas"

 We recently got a care package from Nana that included two sets of pajamas for Benjamin.  They look like the outfits of the two main characters from the movie Toy Story.  Ben LOVES these characters.  In this first photo, Ben had a sore throat (the reason for the popsicle in January) and was in the middle of saying "ready, set, go" because that's what he says when he sees a camera pointed his way.

 Woody eating pudding while wearing Ben's birthday crown from preschool.

At first he didn't understand that the pajamas (or "jabamas," as he calls them) were supposed to look like the outfits for the Toy Story characters.  Once he understood, he asked for these pajamas night after night and didn't want to take them off in the morning.

 Buzz Lightyear flossing.

 We only started flossing his teeth recently.  He went to the dentist for the first time a few weeks ago.  We waited a while to take him because we thought he would be a handful, but he was awesome.  Mike took him, and he said the dentist and the rest of the staff were impressed and amused.  When the dentist said she had to count his teeth, Ben counted to twenty.

 Woody helping Daddy make coffee.

Woody on the go.