You'll see that Liz loves her new twin baby dolls that she got for Christmas. It took her just a second to decide to name them - Chuck and Bob. I won't even begin to offer an explanation. But she loves Chuck and Bob very much.
It was unusual for us to stay at home this year, but it turned out to be quite relaxing and enjoyable. It was the first time I've had Christmas at my own home in more than 10 years and the first time Brian and I have had Christmas since we married six years ago. It was also Liz's first Christmas at home as well. We were fortunate that my mom, dad and brother and sister-in-law came and spend the day with us. Liz got a number of great gifts, from toy computers to books. But I couldn't resist some shots of "Pretend Dr. Lizzy." If you look at the photos from the bottom you can see how serious she is when she's first meeting with her patient and then she relaxes when she feels the patient is indeed healthy. She's checking out my mom and dad. She's taking blood pressure, checking their heart beat and giving them a full physical.
It's hard to believe, but I think I'm finally out of the "dark ages" - at least in one area. Yes, "Santa" showed that even a knee injury won't slow him down, and got me a digital camera - arriving a few days early so that I'll be a semi-pro by the time Christmas comes.
I'll post a few of the early pictures later this morning, but Liz is on the computer upstairs. Yes, I actually meant to write that sentence. Liz can actually play and maneuver the playhousedisney.com games. She only need help every few minutes.
I survived all of the travel last week to New York and even though we had more than 8 inches of snow, I didn't have any flight delays.
Now, we're settling in for our first Christmas since we've been married at our own home. It's actually my first Christmas at my own home in more than 10 years.
It seems strange not to be traveling all over the Midwest worrying about pending snow storms. But it's also relaxing. Liz and I baked several dozen cookies yesterday and she also helped me make fudge.
I took her to the store yesterday to get a few last minute items, and I thought I should get her a baby doll, since she kept asking for one, and I hadn't bought her one. Surprisingly, she only has about two dolls.
The problem was I couldn't go to the store by myself so I had to fudge a bit and tell her that I was getting the doll for someone else. She was not happy at all. But it was a fairly grown up response.
She didn't scream or throw a tantrum, she kept saying: "Lizzy wants a doll."
And, I kept saying: "Well, Maybe you'll get one from Santa, but this is for someone else."
I felt horrible because she looked really upset almost like she was going to cry. Finally, I said: "Liz, what's wrong."
Her response was very serious: "I'm going to talk to Santa about it."
I tend to write more on the blog because I write for a living and am simply more comfortable with it. And without having a digital camera, I'm left with our cell phone camera. To be honest, I've not been that impressed with it. Several times, I've taken photos and tried to post them on the web, and they look awful. A few times, they've turned out OK.
But as promised, I'm finally getting around to passing on some photos from our Thanksgiving in Michigan - thanks to my nephew Daniel.
From the top, you'll see Liz and I snuggling together. I have no idea why that top looks like something that would fit in quite nicely at a Brady's Thanksgiving in the 1970s. In the second picture, that's more how that shirt actually looks. I swear! The second photo is Brian's aunt Marilyn, me and Brian. If you look to the right, you can see Brian's knee brace. Then, we've got more happy photos of Liz.
Well, it's official. We are staying home for the holidays. It was a tough decision, but because of Brian's knee and well, the fact that we're just completely exhausted, we've decided to stay home.
We've been traveling a lot leading up to the holidays and it seems any day that we need to travel more than 35 miles, that's the day with freezing rain, black ice, etc..
Today, we're heading to Michigan City, which is right about 36 miles from out house. Of course, we're expected to get 5 to 7 inches of snow today, but I don't think we'll be getting that snow until evening. Don't worry. I'm not holding my breath because our luck usually isn't that good.
We're taking Brian's mom to the train so she can head back to Michigan after helping us the last week and a half. I definitely couldn't have done it without her! My mom will also be arriving as the "relief pitcher" from the commuter train (South Shore) about five minutes after Brian's mom leaves.
I'm sure those five minutes without any help will be fairly insane, but we'll do our best. I'm only slightly joking.
We still need help because I'm heading to New York tomorrow for the annual staff meeting.
As the entire country knows, the Northeast is expected to get hammered by a severe snowstorm. Some are calling it a blizzard. Others say it's definitely a Nor'easter.
Doesn't matter what it's called, it will make for horrible travel conditions. I'm fully prepared that my flight will likely be cancelled/delayed but hopefully I can get a new flight that evening or Monday morning.
See what I mean about our luck.
Meanwhile, we're also expected to get snow in Chicago and Northwest Indiana, which means that I'll have to contend with snowy runways in Chicago and New York.
Hopefully, I'll be able to make it back on Tuesday evening without any problems.
Moving on to good news. Brian's rehab of his knee is doing amazingly well. He'll get his stitches out on Monday and he'll be back to work on Monday. He'll be headed to sunny Arizona at the end of the month to cover the Hoosiers in their first bowl game in more than a decade.
I'm pretty sure he'll be blogging about it, and I'll forward that address once I get it.
For those of you who have asked, my dad is also doing better. We're just working hard to get the blood-thinner regulated and realize that's a long chore.
Liz continues to be amazingly active. Since it's been rotten outside, she's done a lot of crafts. I helped Liz and her Mimi Hedger make a Christmas mobile. Quite cute. She's also finger-painted several "gifts" for family.
We've done some snow angels outside and once I'm back from New York, we can all enjoy the snow...that is until Brian needs to fly to Arizona. Trust me, I can already guess what that forecast will be without looking.
I've always heard people say that they're amazed by the simple things that children become amused by. We spend so many hours and a lot of money, trying to find the perfect toy. When in fact, all kids really need and want is an old toilet paper roll or that cardboard box that's sitting in the laundry room.
Liz always amazes me with her ability to appreciate these types of things. For several months, she's been completely enamored by "my friend soap."
Luckily, nearly any soap will do. As you can imagine, it's fairly easy to lose her soap friend and we're constantly replacing them.
My mother-in-law was wondering where our soap was in the main bathroom upstairs. That's an easy answer. Liz said: "Oh, that's my friend soap."
So, her friend soap is often carried across the house - in her room, upstairs, on the table, and the list goes on and on.
Brian and I decided we could make her day at Christmas and get her an entire "family of soaps" and decorate their faces! Not to mention that it'd be a lot cheaper than other gifts.
Now, if only I can get her to become great friends with the washcloth. Then, she'd have her friend soap and her friend the washcloth, and maybe just maybe my house wouldn't be such a disaster.
Nah, probably wouldn't work, but it doesn't hurt to include a "washcloth friend" at Christmas...just in case.
It's been a whirlwind the last several days mostly trying to help Brian manage the pain. At last count, he's used 130 pounds of ice, and we've got another 50 pounds in the garage ready for action.
We've been helping him heal mostly with ice, a carefully-prepared concoction of painkillers, and favorite comfort foods like apple sauce squares, his mom's homemade veggie stuffing and banana bread.
The surgery was a success and in addition to repairing the ACL, the doctor ended up needing to complete some additional repairs. Brian came through fine, but was groggy for many hours after the 2-hour surgery.
It's difficult for him to feel so rotten especially since he's used to being so healthy. He's also trying to avoid taking prescription painkillers as much as possible, but that also comes at a price. We're trying to manage the pain as much as possible with over-the-counter medicines. We head to the doctor this afternoon for a checkup as well.
Coincidentally, while I've been hauling ice in and out of the house we had a few minor ice storms here. Nothing horrible, but it seems like there's ice or water everywhere.
To add to the already constant flow of water, Our washing machine also leaked on Friday and Brian's mom and I spent time wiping up all of the water that had flooded into the bathroom. The problem is easily fixable.
I got Brian the last season of 24 as an early Christmas gift and anyone whose seen that show, knows watching Jack Bauer save the world, can help distract you from just about anything.
Liz is doing very well and having a blast hanging out with her Mimi Hedger. However, she had one of her world-record-breaking tantrums in the morning on Saturday but pulled through and surprisingly has been a great girl.
We made Christmas chains for the house and she's helped me make banana bread and she and I also played in the snow over the weekend. She and I also went to her friend Dylan's birthday party on Sunday and had a blast there.
I could go on and on about how utterly behind I am for the holidays, but seems useless to write about it because it won't change. We're not sure if we're going to travel for Christmas. This year, might be the first year that we don't journey across the Midwest over Christmas and actually stay put and have Christmas at our house.
To be honest, it seems too exhausting right now to think about loading up the car and traveling through more ice and snow.
Liz and I came home Sunday and I quickly unpacked and spent four hours getting our Christmas decorations up. Most of that time was dealing with the lights and cursing beneath my breath, but smiling brightly around Liz while wearing my Santa hat and jovially making hot chocolate.
In hindsight, it wasn't a very smart idea to add putting out the Christmas decorations to our already packed Sunday after being gone for four days.
But I knew we'd have no other time to get the decorations up, and even though life has been and will continue to be quite chaotic, I want Liz to enjoy the season. So, we're in Christmas mode!
By early today, I realized I was quickly losing my mind from juggling too many tasks. Today, it became crazy completing my duties as a full-time working-mom while also caring for Brian. My mother-in-law had decided to come today and at first I thought that I wouldn't need her help until after his surgery. I couldn't have been more wrong.
I felt tremendous amounts of stress roll off my shoulders when she arrived armed with health food and extra patience. She and Liz have been making crafts and playing various games while I've been working.
Luckily, Dad was released from the hospital on Monday afternoon and the main issues have been regulating his blood thinners. It will be a long task and he's also getting shots twice daily to help regulate the blood thinners. Hopefully, that won't last for long.
He's slowly recuperating but won't be back to work for another week or so. Brian's been able to work from home, which has been a huge help as well. His surgery is scheduled for first thing Thursday morning. The doctor's office called yesterday to warn us he'd be in "extreme pain." Great. Just what we needed to hear.
Not much positive to say after that sentence - except that the Christmas decorations do look quite nice. Even though it may not have been that wise to hurry and get the decorations up, my mother-in-law made my day, when she asked if my tree was one that came with the lights already on it!
Well, it was clear right then - I definitely deserve to wear that Santa hat.
The day started out a bit scary today - mostly because my dad was told he couldn't have any water or coffee. Well, that's the equivalent of telling Starbucks that it can't offer coffee. It's just unheard of and we're lucky there weren't protests with floods of people clanging their empty coffee cans right then and there.
Luckily, the coffee-ban was short-lived and all was right with the world. They didn't want him to have water or coffee because he was slated to have the stress test.
However, we spoke with the cardiologist and he feels convinced that the heart issues were related to a strain in the heart that's stemmed from the blood clots in the lungs. He's holding off on the stress test for another month or so.
Dad's kidneys are also doing much better as well. So, now we're only down to one serious problem and that's the lungs. He's still on oxygen and taking blood thinners. He'll need to be on blood thinners for many months.
We feel very lucky and blessed that we can now focus on just one problem rather than three or four.
He'll also be off work for another week or two and will still suffer shortness of breath from the problem in the lungs. We're also very lucky that he didn't suffer a heart attack and plan to use this experience as an opportunity to continue and increase some healthy-lifestyle changes Dad has already begun.
Liz and I will probably stay in town with my mom until Sunday. We're not sure when Dad will get released, but once his medicines are regulated, then he can be sent home. The new meds can be tricky and it might take a few days, if not longer.
Fortunately, there aren't any further tests scheduled. So, we're planning on loads of coffee tomorrow.
I know many of you are eager to hear about Brian's injury update, and trust me, I'll get there.
But I'm a journalist after all, and I have to start with the most serious news first.
My dad was admitted at a local hospital today after having shortness of breath and tightness in the chest. Unfortunately, the doctors discovered several serious problems. I'll try not to get too technical, but he has several blood clots in his lungs, his heart tests have been irregular and his kidneys aren't functioning properly. He's also anemic.
But the good news, and I know it doesn't seem like much after writing that sentence, is he's his old ornery self. All of you who know my dad know that's a very positive sign. He's cracked about half a dozen jokes with each doctor and nurse. Sometimes, I think I see them mentally saying to themselves: "OK, get back to the task at hand. Enough joking. Stay focused." Then, of course my dad pulls out another wise crack - usually related to one of the many wires he has attached to his body.
Even though he's remaining jovial, the serious nature of his health isn't lost on him. These are all life-threatening conditions that need to be carefully monitored. I've spoken with two of his doctors today, and am quite impressed with them - particularly Dr. H., his primary care physician. She insisted he go to the hospital this morning. She also reiterated how serious his condition is several times.
On our plate tomorrow, will be a battery of tests - particularly aimed at the heart. We're hoping that the heart irregularities have been caused by a strain from the blood clots, but realize there could also be separate heart issues that need to be addressed.
The doctor is also completing several tests on his kidney and when I arrive first thing in the morning on Friday, she should have some results on that issue as well. The heart tests will take place throughout the day on Friday.
Dr. H. says it will take Dad several weeks to recover just from the blood clots in the lungs and he will need to remain on medicines for that issue for many months.
I must admit that even though this is my hometown hospital, I always worry about being at a smaller hospital for potentially life-threatening issues. But, the standard of care has been excellent. Dr. H. is monitoring Dad's progress on her computer throughout the day while she's at her office seeing patients. She returned my call in minutes and put up my "reporter-style battery" of questions, which can cause even the most sane person to lose their mind. All of the nurses are updating his chart on their laptop computers and Dad's getting poked every few hours. I'm comforted by that, because I know they're very closely watching all of his conditions.
Now, on to Brian's status. Unfortunately, his knee is a disaster - to put it bluntly. Basically, ever ligament that could be torn was torn. His ACL, MCL and LCL, were all torn.
The good news is just the ACL needs to be repaired and the other ligaments are expected to heal. We have surgery scheduled for next Thursday. He'll be in serious pain for one week, but one week after surgery he'll start rehab and should return to work.
Liz and I are staying at my mom's and will be here until things improve for my dad. Luckily, Brian's been working from home and is able to hobble around the house quite nicely now.
My boss has remained incredible as we've been cobbling from one medical issue to another. Everyone keeps telling me: "These things happen in threes. What will happen next?" That's not something I want to hear.
Right before I started the blog, we had a medical scare with Liz. If we must have "3 medical issues" I hope that can count as our third.
Here's that silly Liz. She can't resist those crazy expressions. Check out her Mimi Hedger's face. I think she's surprised too. Thanks to nephew Daniel for these pictures. Trust me, there are many more to come. But here are a few silly ones to start the parade of pictures.
It's hard to believe it's been a week since Brian's accident. Yet, he still can't put any weight on his leg and is in incredible pain each time he moves it.
I feel horrible for him.
You'll be happy to know that he has taken the real pain killers a few times, after resisting for several days. He couldn't even keep his leg still for the MRI last Wednesday, but was able to get that test done on Monday. We should have results on Wednesday.
He was able to survive the holiday, thanks to the Thanksgiving-food coma. He got to eat all of his favorites - pecan patties, his mom's stuffing, mashed potatoes and of course lots of pumpkin pie.
Most of the Hedgers are all vegetarians - so no turkey! Though, as many of you know, you don't really miss it because there's so much else to eat.
In spite of his horrible injury, we had a pretty great Thanksgiving. Liz was a hoot all weekend and I'll pass on some of those pictures.
She's a pretty entertaining kid. Since her cousin, who plays piano, was not there, she performed her own "Solo" for about an hour. Each time, she looked at the audience (family and friends) and waited for applause. She even bowed a few times, after being told how.
Later, she said to me: "Why were the people talking when I was playing?" Apparently, she thought everyone should have been sitting quietly listening to her. What an ego for a 3-year-old.
Then, in the next moment - my "piano-playing genius" can't resist another grab for her boogers.
Never a dull moment. I think we can wait on those music lessons...
We were lucky enough to get Brian to the ortho today. Luckily, we called Liz's ortho, and his partner had an appointment.
Unfortunately, the news isn't good. The doctor isn't sure, but speculates that Brian might have blown his ACL, MCL and meniscus. Apparently, this is described as the "Unhappy Triad" of injuries.
Brian has been a real trooper and hasn't even taken the real pain killers yet. I'm more of wimp and probably would have taken at least a few doses already...if not more.
The doctor gave us the OK to travel head to Michigan. Depending on the weather (it's supposed to snow), we'll try and head out tonight. Brian was also able to get an MRI done today, which is good news because then we'll be able to have more information from the MRI.
It's most likely Brian will need knee surgery. We'll continue to keep you posted. Hopefully, we can still have a relaxing holiday.
Brian had quite a dramatic work-out session today. He went to the YMCA and took Liz with him. They have a really nice child-care center that she attends while he's working out.
He was playing basketball and reports that he was "playing quite well when he skied for a rebound and an old codger cut him off."
At that moment, he fell down right on his left knee blowing it out. Apparently, the fall was quite gruesome and even the other folks he was playing with, made comments. "Man, that was the worst fall I've ever seen."
That's always comforting.
He called me and I dashed to the Y and took him to the ER, one block away. Nothing is broken, but they're speculating there's probably some torn ligaments. He'll see an ortho specialist next week. For now, he's on crutches and pain killers. He's handling things as well as possible given the pain and the fact that if he moves his leg he's in excrutiating pain.
We're still going to try and head to Michigan to see Brian's family for Thanksgiving. This was actually Brian's first day of vacation. He has off until Sunday. We'll keep you posted.
Last night, we had settled in to our regular Monday night routine. We always watch "Matt, Amy and Zach" which is "Little People Big World" that is shown on TLC weekly.
Since the show started, we've enjoyed watching it. At first, it was mostly for Brian and I to get a sneak peak into the life of the Roloffs. Now, it's more for Liz. She loves to see what adventure Matt and Amy are involved in each episode. It also helps her to see what other little people are doing. And, if you've seen that show, you know that the Roloffs do everything. They don't let anything stand in their way - including their short stature.
Now, Liz understands that she'll be little like Matt, Amy and Zach. She also understands that Jeremy and Daddy are tall.
She's not so sure how Mommy's height figures into the mix. Mommy is shorter than Daddy (who is tall), but is Mommy a little person?"
We were talking about how Matt, Amy, Zach and Liz are little people." And she said: "And Mommy's a little person too, right?"
I tried to explain that I'm smaller than Daddy, but not a little person.
Her response was: "But, I want Mommy to be a little person."
If she only knew how much I wish I could be a little person with her.
I always say that I never know what's going to come out of Liz's mouth, and that's no exaggeration. Sometimes, she stuns me with her observations. Sometimes, she says something so funny and other times her comments are funny and a bit embarrassing.
Here's an observation that surprised us. We were watching the Democratic Debate the other night. Don't make fun. We've found these primary debates to be quite entertaining because some of the candidates who aren't front runners can be surprisingly candid and even humorous. While we were watching it, Hilary started to mention Russia. She just said it once, and Liz picked up on it and said: "Russia. That's where FireBird lives."
I was pretty surprised that my 3-year-old recognized Russia. I asked her where it was, and she said: "Far, far away."
Of course, I realize that The Little Einsteins "Rocket's Firebird Rescue" deserves the credit for Liz knowing about Russia. In the movie, they need to rescue a Firebird who lives in Russia. So, there's a lot of discussion about Russia.
That was the most recent observation. Now, onto the embarrassing comment. Liz and I were leaving the mall on Saturday and there was a woman walking in front of us wearing tall, black stylish boots with about 4-inch heels. Liz looked at her and LOUDLY said, "Mommy why is that woman wearing THOSE shoes?"
Yikes. I've learned in these situations a parent only has two choices. Say something very funny right away or if you can't think of anything, make an emergency exit. Luckily, we were in the parking lot and our car was to the right, so I began to hurriedly walk to the car. Not before, the woman shouted something back. I couldn't hear what she said, but I think it was a good-natured comment.
Today, she also made a funny comment to me. "Mommy, you have a really long nose."
Check out that face. Liz was chowing down on some dinner (and candy) after trick-or-treating. She's in her sock-hop outfit. She wore it last year and since it still fits we decided to wear it again. She enjoyed twirling around in it.
Brian got this Michigan State outfit for Liz, and was hoping that if she wore it on the big game day - MSU vs. Michigan - it would bring a victory for the Spartans. Unfortunately, even her cuteness couldn't score the Spartans a win.
Shortly after learning that Liz had achondroplasia, I realized that we'd learn so much from her. That's clearly already happened.
I also realized that as she grows up she will be a unique perspective. I imagine that she'll have different views, opinions and sensitivities just because of her condition. Just as I'm sure my perspectives would have been different if I'd have gone through life with achondroplasia.
I think that we'll have more interesting and unique conversations at the dinner table, especially as she ages.
But still, I was surprised by her response a few weeks ago.
We were at my cousin Debbie's baby shower for her newborn Baby Jacob. Jacob was about 1-month old at the time, and Debbie was opening some clothes that were probably size 12 to 15 months. The pants were obviously much too big for Jacob right now and will be used once he grows into them.
Liz was looking at the clothes and then looked at Jacob, and didn't miss a beat when she said: "Those pants will probably need to be hemmed."
Not sure that's something a lot of 3-year-olds would know about.
Yes, we do a lot of hemming at our house. OK. To be completely honest on this one. My wonderful sister-in-laws - Margo and Helen -have done most of the hemming.
But I was still surprised that Liz had picked up on the discussions about hemming. Makes me realize how observant she is to everything around her.
The best part of my commute to the city is all of the people I see and hear around me. Many of the conversations can't be repeated, but there are some gems.
The other day.
A lady on the train: "So, we went to Frankenmuth, Mich for the holiday and had a wonderful time. It's so nice there, and the shops are just fabulous. We were talking with someone in housekeeping when she mentioned that they were quite busy because of the holiday, Veterinarian's Day."
Before I start getting tons of e-mails demanding pictures, I'll let you know that they're coming.
I know - what's a family blog without pictures? It may be hard to believe, but we Hedgers are still in the stone ages. That's right. We don't have a digital camera yet. Regardless, we still have a number of Liz's pictures in a digital fashion. And, I have about a dozen rolls that still need to be developed. Seriously, I'm not exaggerating.
Since the price of digital cameras is so cheap, we have no excuse. Pictures are on the way!
For the past 1 1/2 years, I've had a long commute to downtown Chicago. It's a good two hours one way and totals 4 hours of my day.
The commute would be a lot shorter if I drove, but I like public transportation for a number of reasons. Obviously, it's a lot cheaper and I feel like I'm helping the environment...in my own little way.
I've worked from home on Fridays but that still means 16 hours of commuting time plus a 40-hour-work-week. I finally decided to ask my boss if I could work from home 3 to 4 days a week. He didn't hesitate to say yes!
I'm quite excited and believe this will be a huge relief. Now, I might actually feel well-rested.
Since Liz has achondroplasia, one of the first questions I'm asked is whether we knew about this before her birth. Even though in many cases people do know beforehand, we didn't.
We had ultrasounds, but the most recent was at about 24 weeks, and there was no reason to have later ultrasounds. If there had been an ultrasound at 30 weeks or later, there would have been indication of the achondroplasia. It would have shown shorter leg growth and a slightly larger head.
Because we were unaware of her condition, we proceeded as if there were no health conditions involved.
Her birth was an emergency C-Section after her heart-rate bottomed out, and mine wasn't doing so hot either. She was rushed to the NICU and luckily was only there for 5 days.
In our case, it was clear that many of the medical staff had never treated a baby with achondroplasia. Yet, they were able to detect the possibility of achondroplasia just two days after her birth.
One nurse also told us that she'd never seen "anything like this" in her 16 years as a nurse. She was also the same person who used words to describe Liz that I would never say about my worst enemy.
Unfortunately, that gave us an early indicator that there are still so many people in our society who are not sensitive to people with differences.
Surprisingly since then, I've found that a lot of people are simply curious about Liz's condition, and generally handle the situation all right, once we explain it.
Once we arrived home from the hospital, I armed myself with as much information as I could about achondroplasia.
It became clear to us from that Liz is a very determined (stubborn) person She hit all of her milestones in stride, even though we were expecting significant delays. She continues to stun us daily.
Now, at age three, I love hearing her conversations. Her sentences amaze me. The other day, she told me, "I have lots of energy and we eat healthy foods to get energy."
She's a little chatterbox. I'll post some of our conversations too.
While I don't want this to be a medical blog, I know many people are curious to learn about how Liz is doing health-wise.
It seems we're always worried about one medical issue or another, and I guess that will never change, but she's doing remarkably well.
I feel that we've been extraordinarily lucky and blessed given the very serious health problems that face people with achondroplasia. The only surgeries Liz had are for ear tubes. She's been under anesthesia a number of times for MRIs.
Before I began this blog, I started to read a few other blogs whose children have achondroplasia or a different form of dwarfism. In one blog, a baby with dwarfism died shortly after birth, and that's just another reminder of how truly lucky we are with Liz.
When she was first born, she had some health problems mostly respiratory related and was in the NICU for about 5 days. Since then, we've had to see countless doctors and unfortunately Liz always seems to fall under the "borderline" category. Luckily, none of the "borderline" problems have escalated. At one point, Brian and I counted that Liz has about a dozen different doctors. We stopped counting.
One of the things that annoys me most about the public perception of achondroplasia or other forms of dwarfism is that people think that the condition is only cosmetic and there are no health-related issues. That's obviously completely false.
The good news though is even despite the medical conditions, people will achondroplasia can live full and healthy lives.
Liz has a mild form of spinal stenosis that has never required surgery, but we obviously keep close appointments with her neurosurgeon. This is the narrowing of the spinal cord and it can lead to compression of the cord, obviously a serious condition.
As I said, Liz's condition hasn't required surgery and in August we had a fabulous report from her neurosurgeon. After seeing him regularly for 3 years, we don't need to see him again for another 2 years. We were thrilled! We anticipate that her spinal stenosis will continue to improve as she ages.
Another major concern is hydrocephalus, which is described as fluid on the brain. Liz has never had this. However, we had a recent scare a few weeks ago. She kept complaining of headaches and we didn't understand why. Things got so bad, she was pushing her head on the ground. We wasted no time calling her doctors - about three of them - and rushed her to the hospital for a STAT CT. Luckily, everything looked fine. Unfortunately, it showed mastoiditis, which is an issue with the sinuses.
Of course, her doctor called me the next day and wanted to see her in 30 minutes, and we had to get her to her ENT. But we've learned that often times, her pediatrician and radiologists who read the reports, are very cautious. Once we see her specialists, we're often reassured. That's exactly what happened in this case. We saw the ENT and she felt that the mastoiditis was nothing more than ear fluid that had settled into the ears.
People with achondroplasia are at risk for hearing loss and often have dozens of ear infections and multiple sets of tubes. Liz has had many ear infections and two sets of tubes. She had hearing loss early on, but regained it.
Liz also has sleep apnea, but her type of apnea is not the fatal kind. She has obstructive sleep apnea, which impacts the amount of oxygen getting to the brain. The sleep studies have been torture for us to endure, but at this point she seems fine and hasn't had to sleep with an apnea monitor.
Every night that we had to spend at Children's Memorial in Chicago to complete the ongoing sleep tests were horrible. You'd think a sleep study would be a breeze. But imagine, hooking up a baby or a toddler to 100 wires and then telling her to sleep. Impossible.
Then, all night if her apnea occurred, alarms would start buzzing, and Brian and I were a wreck by the end of it. And we all just wanted to rush home and get some real sleep. Of course, we always had to bathe her because they use this sticky-solution to make sure the wires stayed on her body. Her sleep doctor still wants another sleep study, but at this point, we're holding off because she seems to be doing great!
There are a whole host of other medical-related issues with people with achondroplasia that I won't get into. Certainly, the bones are a big concern and we just saw Liz's bone specialist and he said right now her bones look great. That was a huge relief. She'll need to see him regularly for the rest of her life.
We also still continue to see Liz's geneticist - Dr. Z. She's one of my favorite doctors. I know I can call her at home or at work, anytime and she'll get back to me at her earliest opportunity. She saw Liz in the summer too and was absolutely thrilled with her progress. She gave Liz a cognitive test and she passed with flying colors.
She mentioned that Liz has lordosis, which is an inward curvature of the spine. We can do some exercises to help that condition, but there will be virtually no way to ever eliminate that. Down the road, this will cause back pain.
Like I said, these are most of the medical issues we've dealt with, and they've really been quite minor.
When Liz first started preschool, I was pretty concerned about this big step. Mostly, I was worried about how the other children would respond to her height. At age 3, she's about 30-inches tall or as tall as a 1-year-old. Her class is part of a university pre-school and is made up of 3 to 5-year-olds. I've read all about the reasons for having mixed ages in the same class. I realized this would help her to learn from older children, especially since she's an older child.
But, I knew that it also was the first time we'd start dealing with children's comments about Liz's height. On our tour of the preschool, we arrived and a curious 5-year-old went write up to Liz, and commented on our height. "She's so small."
Our response: "Yes, she is."
But that didn't satisfy the little girl's curiosity. She probably mentioned Liz's height five times, while we were trying to look around the school. Finally, Liz, who was completely captivated by the books and paints, began chatting about everything she wanted to do.
As she began to chat, the little girl said: "Wow, IT talks."
Well, you can imagine how I felt hearing someone call my child an "it." I kept telling myself that a 5-year-old doesn't understand pronouns and she didn't mean anything by it. Regardless, it caused my anxieties to heighten. By the weekend, I was very worried and concerned about Liz starting preschool and even started to question whether this was the right time.
However, when school started our fears were eased. We realized right away that Liz's teacher had read a great deal about achondroplasia. She even knew the right descriptive words to use when talking about her condition.
So far, the experience has been great. Liz has made friends and loves everything about preschool.
Of course, she's also showing her "creative side." Essentially, every day I go to pick her up, her teacher tells me of something she's done. The list goes on and on - from hitting other children, drinking from the water table, to walking on the classroom table.
On Wednesday, we learned about her "leadership skills." Liz decided to pick her nose while in circle time and from there, you know right where her fingers then went without me even writing it. : )
Her preschool friends must have been impressed by her action, because EVERY child in her class followed her example and did the same thing. I laugh as I write this, but you can imagine that her teacher was not laughing.
As Liz and I walked out that evening, we saw the director and for no reason, she began raving about Liz's leadership skills. Hmmm. So, that's what they're calling it now days.
For months, I've read other blogs and thought of starting one, but never did, because I feared it would mean too much writing. I write for a living. However, jotting down thoughts about family is a lot different than writing about 401(k) plans and Individual Retirement Accounts. My purpose for this blog is mostly to update family and friends on our life.
But I also realize that we have a unique situation because our amazing 3-year-old Liz has achondroplasia, which is a form of dwarfism. Achondroplasia is one of the most common forms of dwarfism, but it still only occurs about one in 40,000 to 80,000 births. There are many health issues also associated with achondroplasia. We've been fairly lucky, but have had our scares. More about that later.
We were pretty stunned and surprised by Liz's diagnosis at birth, and were craving information. In the future, some families who have a child with achondroplasia might stumble upon this blog. I'm happy to answer any questions or concerns they might have. Now, that Liz is 3, her personality is so vibrant. Actually, her personality has always been vibrant. She just continues to amaze me. Luckily, many of the earlier health concerns have subsided. Obviously, she'll always be at higher health risks for the rest of her life because of her condition. But overall, we're content to chase her around and try to keep up with her. She's a spitfire and we never know what she'll say or do next.
In some respects, I'm also glad that I chose to write this blog now - rather than when she was first born. Mostly, because I was a big mess then and so worried all of the time. I'll always worry, but just a quick glance at Liz throwing all of her toys all over the house, let's me know she's fine.
I also plan to write the story of her birth, but it brings about a rollercoaster of emotions and will take awhile.
For now, we'll stick with some fun stories of Liz.
Welcome to our blog. We'll mostly post about our crazy experiences. But we realize our family is unique because our beautiful girl Elizabeth has achondroplasia, and we know other parents and families may want to read about our adventures. If you are new to this blog, you can read "The Medical Side" and "Liz's entrance to the world," to see our how story began.