Summer of surgeries

It's been a terribly busy summer and that's mostly to blame for my non-existent posting. Brian had oral surgery with a painful extraction of wisdom teeth that were removed three weeks ago. The teeth were essentially sideways and he had pain so the teeth had to go. The procedure was more painful because of the difficult extraction.

On Wednesday, Liz had her tonsils removed, her adenoids shaved and another set of tubes put in her ears. We couldn't have her adenoids completely removed because she has a split uvula and there was potential for speech problems.

Her tonsils are huge and seem to be to blame for her destructive sleep apnea as well as the adenoids. We didn't expect to notice much improvement for a few weeks because of the post-surgical recovery time but surprisingly we have seen her snoring and breathing is already more quiet than before.

The recovery for tonsils has been much more challenging than it is for tubes. She felt horrible for a few days and even had some post-bleeding on Thursday but today felt much better for the first time. Some people tell me it only takes two days to recover from tonsils and others say two weeks. For her, it's probably somewhere in between. She's four days out now and seems much more like herself.

I loaded the freezer with Popsicles, ice cream, sundaes, sherbet and pop ups and she really hasn't eaten hardly any of the cold stuff. I'm not sure why, but she's favoring soft solid foods like cupcakes and soft pasta. It's surprising and a little annoying because now I'm eating all of the cold treats!

We decided not to take her to summer camp for two weeks, but I have a feeling she's really going to be bored by the second week at home, and we're staying away from swimming too for the time being.

I'll be the last person in our family to have surgery and that will be the c-section to deliver Baby Chance on Aug. 24 - five weeks away - unless he surprises us and come early. At this point, we decided on a c-section because of the complications with Liz and some other issues. I'd prefer a natural birth, but the doctor believes this would be better for the baby.

Liz will start Kindergarten on Aug. 19 (isn't that early) and we'll be around to help her with school and then the following Monday Chance should arrive.

She turned five on June 17 and we had a big birthday bash for her, and she's quite excited about starting Kindergarten plus being a big sister. Quite the big summer for her!

One of these days, I'll actually post her birthday pictures (hopefully before Baby Chance arrives).

Successful surgery

We rose early this morning and headed to one of the Children's Memorial hospitals for the 7:45 a.m. surgery. Liz was excellent. We'd talked to her a lot about how they would put a mask on her to help her sleep and then she'd have the surgery so she could hear better.

There were plenty of toys for her to play with, but when the little boy's surgery before her ended up going longer, she got bored. She kept saying: "When am I going to have surgery?"

Her doctor reported that she had a great deal of thick fluid, which was obviously causing the hearing loss. This was her third surgery and she was a pro - though she had her first when she was less than a year old and her second when she was only two. So, this will probably be the first one she'll remember.

They had suggested giving her some drugs before the anesthesia, but since she's older and was prepared for it, we turned them down. Turns out she was excellent. I went back with her while they helped put her to sleep with the mask and she didn't even cry at all.

Seventeen minutes later when we went back to see her, she was happily sucking on a Popsicle. Of course, she did get some of the side effects of the anesthesia - the grumpiness. We're all a bit tired, but she's been fabulous.

She's still said, "I can't hear you," a few times. It just might take a day or two for all of her hearing to resume. But on the bright side, she did remark to me, "Mommy, things sound very different." I'm hopeful that means things are louder. There have been times I've spoken softly to her just to see if she can hear me, and I think she can.

Here's a picture of her before the surgery. She's getting a bit impatient waiting for it to happen. But still in pretty good spirits.



This was a photo from a few weeks ago after we had her hearing tests and appointment with her doctor. We always try to do something fun after medical appointments. She was eating a most delicious double-chocolate cupcake across from Children's Memorial's main hospital campus. This time, we had to take it easy on food - just in case she might get sick, but if she's feeling fine, we'll get something special for her tomorrow.

Mommy, I can't hear you!

It became quite apparent to us in the last month that Liz simply can't hear us. At first, I thought it was "selective" hearing loss.

For instance, I might say, "Liz, I need you to clean up your room." Her response: "Mommy, I can't hear you."

Sure, you can't hear me, I thought. Of course you can hear me.

Well, it became very obvious that in fact she can't hear me because no matter what I say, she can't hear me most of the time. A lot of times, she doesn't even respond to me simply because she can't even hear me talking.

It also became clear at school. Often times, we'd be walking into her school and a friend behind us, would say hello. She wouldn't even respond because she couldn't hear them. Her teacher even commented about this to me.

So, we took her to Children's Memorial in Chicago two weeks ago to see her Ear Nose Throat doctor and got her hearing tested. It was confirmed that she has moderate hearing loss on the left side and severe loss on the right side. They also said that with her hearing loss it would be a huge safety issue in the summer because her hearing is so bad she won't be able to hear vehicles behind her.

The doctor believes the culprit is a huge amount of fluid in her ears from an ear infection in January. So, we're going to do the surgery for tubes early tomorrow morning and are anticipating her hearing should return to normal again.

I'm a bit worried because she has a cough and we all know how strict the doctors are about not doing surgery on kids if they even have a sniffle. However, her pediatrician is convinced the cough is being caused by the fluid and the cough won't go away until the ear fluid goes away.

She's had tubes before - and all has gone well - so we're hopeful that the same will be true this time.

And most importantly, I'm looking forward to her hearing again so we don't have to practically shout around the house.

Medical Mayhem

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.

The Medical Side

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.