Eye update

Anna had a follow-up appointment today with her primary ophthalmologist.  (I think I can finally type that word correctly without spellcheck!  And who would have thought she would have a primary ophthalmologist?)  Three things were on the slate for today: eyelid cyst, double vision, and cataracts.

First things first, the cyst needs to be removed surgically.  It probably first started growing last summer when Anna was having all of the styes on her eyelids, but this one was deep inside the tissue and no one could see it.  Three week ago when we first noticed the bruising around her eye was when the cyst finally broke through the connective tissue membrane that separates the lid from the muscles (I think?).  Everything that we see now (which is a lot) has been around for 6-8 months, we just haven't been able to see it.  The antibiotics and warm compresses have no effect and it won't go away on its own.  So surgery it is.

Who knows if Anna would have had issues with styes had cancer and its treatments not happened?  According to this doctor, they are considered common in kids Anna's age, being caused by plugged oil glands that then create an over-reaction by the immune system.  I guess this is one of those things we will never know.

Second, according to this doctor's measurements, Anna's double vision has actually gotten worse than it was in December, contrary to what the vision therapist told us a few weeks ago.  This doctor has not pushed for a surgical way to fix Anna's double vision in the past because he didn't see a real need to have her undergo surgery and anesthesia if she didn't need it.  However, since Anna needs the other surgery, he asked if we would like to correct her double vision at the same time with surgery to the muscles.

Side note ... the ophthalmologist and I had a very good conversation, probably one of the best we've had.  I was able to ask a lot of questions that he answered as thoroughly as he could.  After this appointment, I feel that I have a much better relationship with this particular specialist than I did before.

Back to the matter at hand, at the appointment, I told the doctor we would want to talk things over as a family before we made our final decision.  After speaking with Matt and Anna, I think we are going to combine the two surgeries.  The vision therapy seems to be hit or miss on its improvement; it's a lot of work; it is not covered by insurance; and Anna will need surgery on her eyes anyway.

Third item, cataracts.  Anna's cataracts are definitely "radiation" cataracts, meaning they were caused by her total head radiation treatments.  They are of medium size at this point, but the doctor was surprised by how much they had grown since December.  Since Anna's last radiation treatment was three years ago, the cataracts should be done growing.  They are not causing Anna major vision problems at this point and the doctor recommended just leaving them be for now.  He will continue to monitor them and we will all remain hopeful that Anna will not need to have cataract surgery.  Although this type of surgery is fairly commonplace for older adults, it's a bit different for kids and we would like to avoid it if we can.

As for the surgery, we will get a call in the next few days to set it up.  Most likely it will take place in May and Anna will be out of school for up to a week recovering.  Oh, well.  There's never really a "good" time for something like this to happen.  We will just use whatever leverage we can to avoid Anna missing some of the more memorable days at the end of the school year.

That's enough of that.

In spite of a nasty cold going through our home in the last two weeks, here are a handful of pictures of our family enjoying the gorgeous spring weather anyway.

Kate decided last week that she likes swinging again.  Last summer she didn't like hearing the squeakiness of swings, but this year the fun seems to have outweighed the discomfort. 

All three kids spent several hours swinging over the course of last week :)

Friday night we opted for a family campfire instead of a movie night or a game night.

Of course we had s'mores, but only after certain individuals ran around the yard or back and forth in the field first.

Then we practiced balancing around the perennial garden, except for Anna, who is hiding under the blanket to keep the smoke out of her face.

In the last week, I've also been able to till up the garden and get the first round of things planted.  Broccoli, peapods, potatoes, onions, and beets are all in.  We are expecting some rain this week so hopefully those veggies will be up sometime soon.  Once the broccoli seedlings were out of the basement, I was able to start the tomato and squash seeds.  The fruit trees are flowering and the spring weather simply brightens up our spirits!

The good and the bad

Last Tuesday Anna had a couple of appointments.  I was wishfully thinking that these might be the last of the appointments this school year.  Well, except for those two that are scheduled for the day before school gets out.  At least those are on June 1 instead of on the day of Anna's school's field day.  These doctors don't have a lot of availability.  But I digress ...

I'll go through the good news first.  The first appointment was with the vision therapist who we saw back in February.  She had given us a few eye stretches and exercises to do with Anna to help with her sixth nerve palsy, which is the root cause of her double vision.  The doctor wasn't particularly optimistic at that appointment, but we have faithfully done the exercises 4-5 times a week for the last two months.  We even found a few ways to do them that were engaging and enjoyable enough for Anna that she would ask to keep doing them.  Crazy kid.

On Tuesday, the doctor went through her series of measurements and, low and behold, her findings show that Anna's double vision has decreased by 50%.  Wow!  We plan on keeping up with these stretches and exercises to see what kind of continued improvement Anna can experience.

Bad news #1, though, was that Anna was having difficulty reading the basic eye chart.  I asked if that meant we were in the market for new glasses, now with actual correction instead of just the prism lenses.  After a few more checks by the optometrist, she concluded that Anna has cataracts on both eyes.  We had known about one previously, but there seem to be more now and they are to the point of clouding Anna's vision somewhat.  Bummer.  The optometrist directed us to our ophthalmologist and told us to wait to schedule our next appointment with her until the ophthalmologist determines a plan for the cataracts.  FYI ... cataracts in a 9 year old are not typical.  However, cataracts are a potential side effect of radiation treatment.  Guess we know where those came from.

Bad news #2 was related to the bump under one of Anna's eyes.  About two weeks ago she woke up one morning looking like she had a black eye.  After a day or two, it looked like a bug bite.  Then last weekend it turned into a real bump.  We decided to see what the doctors on Tuesday said before scheduling yet another appointment.  The optometrist told us we needed to get Anna in to see our primary care physician as soon as possible regarding this bump.  That particular office didn't have any appointments yet on Tuesday so we made one for Wednesday morning.

On Wednesday morning, Anna was diagnosed with a lower eyelid cyst, possibly related to all of the styes she experienced last summer.  She is currently being treated with warm compresses 3-4 times a day, a preventative antibiotic, and a 48 hour course of steroids.  The cyst hasn't changed, except perhaps to get bigger.  We have an appointment scheduled for next Tuesday with the ophthalmologist, at which time he may recommend some type of surgery to remove it.  We will just have to wait and see, but until then we will continue with our home treatments.

Backing up briefly, Tuesday had another set of good news.  The second appointment that day was with the GI doctor (who has a lot of other lovely names in our home, by the way.  Kids + a doctor who cares about your digestive system = lots of silliness).  The good news is that Anna is actually following a growth curve right now!  Granted, it's at about the 5%, but she actually grew again.  Hip, hip, hooray!  The doctor and nutritionist are pleased with how everything is progressing and concluded that Anna probably has better nutritional input than most of the rest of us these days.  Like we've said before, there's not a lot we can control in terms of Anna's health, but we will do our best to make sure that her nutrition is top-notch.

After the trip to Denver with Kate, the medical hullabaloo of Tuesday and Wednesday was more than I wanted to deal with.  But such is life.

Friday the girls were off of school; Matt even came home early to pick Ethan up so they could get him a new (craigslist) bike.  The little 12 incher just wasn't cutting it anymore for our growing boy.

It didn't take him long to figure out the balance of this 14 inch bike.

Friday night we decorated our Easter eggs and just tried to relax a little after the different routines of the last several weeks.

Saturday morning we headed out as a family to get Kate a new pair of good gym shoes, and a new (craigslist again) bike.  This kid just keeps on growing.

As with Ethan, it didn't take Kate long to figure out the mechanics of balancing on this 24" bike.  When did she get so big?!?!

Sunday morning was our wonderful worship service at church coupled with a delicious Easter brunch.  Although the drive in was still dreary from the overnight storms, the sun came out and provided us with a beautiful day to enjoy God's creation.

Sunday afternoon included lots and lots of driveway fun with both Ethan and Kate mastering the transition up to their new sized bikes.

Matt officiated plenty of driveway races, figuring out how much of a head start to give each kid so that the race was fairly competitive by the end.

Time for Prayers

Please pray for Anna's eye issues in the coming days and weeks, that any healing would occur quickly and easily and that, if not, the doctor has treatments that are smooth and uncomplicated.

Colorado Trip - Part 4

Sunday was the return trip home.  My dear brother offered to pick us up at 5 a.m. and drive us to the airport for our early flight.  Keep in mind that he has an infant at home.  He's a good guy.

We arrived at the airport, said our quick good-byes to Adam so he could go home and get some more sleep, purchased coffee, donuts, and bagels for breakfast, then made it to our gate by about 6:30.  We boarded our tired selves onto the airplane and settled in for the next leg of our journey home.

The flight back to Chicago was uneventful and much faster than expected.  In fact, we landed about 40 minutes early - so early that there wasn't a gate available for our plane!  I made a quick check of the departure times for the buses back to Madison and found one that left much earlier than the one we were planning on taking, but it was scheduled to leave about 15 minutes after we exited the plane.  Kate got her first experience in moving fast through an airport to catch a connection.  When we finally reached the shuttle bus station, we saw our bus at the front of the line, ran the last few hundred feet, and were the last ones to board ... we even had five minutes to spare!

By that point, poor Kate was t-i-r-e-d, but just couldn't sleep on the way home.  The photobooth selfies she took on that ride look much sadder and droopier than the ones she took earlier in the trip :(

But we made it home by 2:00, a full 90 minutes earlier than we had planned.  Kate spent the next several hours playing outside with her siblings, who missed her very much.  I could almost feel Kate give a big sigh of relief when she was finally allowed the freedom to just play again.

The evening was challenging for her, but she must have had a terrific night's sleep because she was positively perky on Monday morning.  Monday was the harder day for me; all of the activity and sleep disruptions finally caught up to me.

Overall, it was a great trip with the opportunity to make wonderful memories, both with Kate and with Adam and his family.  At a few different times, I reflected on how this trip might have looked different with Ethan along, or Anna, or the whole family.  I decided that not only would the weekend have looked very different in terms of the details, I just don't think either Anna or Ethan is ready for something like this yet.

Ethan would probably have been okay with the airplane aspect, although he would have asked a lot more question.  Once in Denver, though, he wouldn't have been able to keep up the same pace that Kate and I had.  As for Anna, she's probably not ready yet either.  She is certainly closer than she was a year ago, but transitions are still tough for her and there are lots of transitions (both physical and mental) when traveling like we did.  Maybe someday she will be ready, but not yet.

For anyone wondering how the other 3/5's of the family did while back in Madison, they did great.  Matt successfully helped Anna arrive on time at school both Thursday and Friday; he took both kids to church on Saturday morning to help with the church clean-up day; they went to Olbrich Gardens on Saturday afternoon to enjoy the weather; he made Ethan some pallets for his toy fork lift; and the three of them participated in the Palm Sunday worship service on Sunday morning.

Matt also CLEANED THE HOUSE, or at least a good portion of it.  And when Matt cleans anything inside our house, he really cleans it.

I think the three of them made some good memories together, but we are all glad to be back together as a family and return to our routines.

The last three weeks have involved a lot of traveling and it will be nice to just be at home for awhile.

Besides, the garden will need to be planted soon :)

Colorado Trip - Part 3

When I asked Kate back in March what she wanted to do while in Colorado, she said "Go for a hike in the mountains!"  Saturday was the day for that.

After our morning walk, yummy breakfast, and more visiting, we drove up into the mountains to Golden Gate Canyon State Park for our adventure in the mountains.

We had done our research beforehand and picked out what we thought would be a good hike for us.  In hindsight, I think I should have talked to the rangers at the Visitor's Center the morning of and gotten their opinion.  Ours worked, but I think we could have found a better one if we had just asked.  Oops.

The first sign that this trail might be tricky was that the beginning of it was covered in snow.  Earlier in the week Denver and the surrounding area was dumped on with snow.  All of the snow in the city was gone, but the shaded forest higher up had 2-5 inches still on the ground in several places.

Although we both had warm jackets, Kate was wearing capri leggings, cotton socks, and her regular school gym shoes (which I learned earlier in the day are way too small for Kate!).  Oops again.  I asked several times if she wanted to turn around instead of doing the whole 2.5 mile loop, but she insisted on going forward.

Then we discovered some tracks in the snow and watched them crisscross the trail for 1/8 mile or so.  I'm glad we didn't meet whoever made these tracks!

Finally the snow cleared off, but then we were into the toughest part of the elevation climb.  Kate hasn't had a lot of experience with this kind of hike yet and the middle third of the trek was pretty tough for her.  We stopped frequently to refuel, but she wasn't interested in the fuel with a lot of calories, she wanted her cucumber.

But we made it!  There were no pretty views at the top, except for this really cool dead tree :)

The way back down was a little more pleasant, except for the steep sections still covered in slippery slush, and the need for many potty breaks.

Poor Kate's shoes and socks were soaking, so she took them off and just slipped her shoes off at our next stop.  We drove to Panoramic View Point to see our closest glimpse of the real mountains that we would see.

Unfortunately, we didn't stay long because Kate was ready to be done.  She had cold, wet feet and was pretty wiped from the hike.  But at least she posed for a few pictures.

And then took one of her own.

We took the scenic drive back to Denver and only had to stop once to take a break from the twisy, turny roads.  But even those kinds of breaks are fun with Kate, especially if she's barefoot.

Our evening back with Adam and family was low-key, but enjoyable.  Kate and I don't need much.  Some food, good conversation, a baby, and a dog ... what more could you want?

Kate was able to spend some more time bonding with her youngest cousin while us grown-ups chatted some more.

We did our best to memorize this guy's face and emerging personality.

And then we headed down the street for some delicious local ice cream to round out our visit.
 

(Surprisingly, this was the only picture I got of Jess and/or Adam.  Either the trip was not about seeing them, or I was having too much fun talking with them to think to take any pictures of them.  I think the latter is going to be my story.)

One more post to come!

Colorado Trip - Part 2

Friday was our first tourist day.  After our morning walk to Adam and Jess' for breakfast and socializing, Kate and I ventured across town to the Denver Museum of Nature and Science, which just happens to have reciprocal membership with the Madison Children's Museum ... we LOVE our membership :)

When we chose this activity, I didn't really know what to expect from Kate.  She's been to plenty of museums, but never without her siblings who, let's be honest, can't handle as much as she can.

Oh. My. Goodness.  Kate was in heaven.  We arrived at about 9:30 and I had to force Kate to leave at 4:00, with only a 30 minute lunch break in the middle of the day.  We could have spent a few days at this one museum.

We started the day by posing with the large T. Rex skeleton, but moved quickly on to the more in-depth exhibits.  Gems and anything with animals were high on Kate's list of things to see, but we managed to squeeze in a few others as well.

These next two photos describe how Kate absorbed each and every scene with such detail and awe.

At some point we stopped for lunch and I checked in with Kate about how she wanted to spend the rest of her day.  She was thrilled to stay at this museum, provided that we could pick out souvenirs for the kids in our family (stuffed animals for the girls ... seriously!?... and a NASA space set for Ethan).

We also headed up to the observation deck to see the, once again, beautifully clear view of Denver and the mountains.

Then we just kept going.  I learned plenty and Kate and I managed to have great conversations about just about everything we were seeing.  She's a fun museum buddy right now.

We probably shouldn't have saved our last exhibit for the end, but I bet if we had found it earlier in the day, we would have spent too much time there.  The interactive health exhibit was very well done, with the ability to obtain personal information about your heart, your height/arm span, your stride, and plenty of other topics which we didn't have time to even look through.

Our very last activity of the day was an experiment in which we tested different cleaning products to see which one was most effective at killing bacteria.  Lab coats, goggles, and gloves were required :)

Bleach was the best killer in our test, in case anyone is wondering.

Then it was time to go.  I'm sure we would have stayed longer if we could have, but we were scheduled to babysit baby Nash so his parents could go out to eat just the two of them.

Mama and Papa Bear were a little nervous about leaving Baby Bear, but they were also confident in our ability to take care of the little guy.

It's been awhile since I've had an infant take a nap on my shoulder, but I enjoyed the experience almost as much as Nash.  Babies can be very fun and sweet, but it's also nice to hand them back to mom and dad when the day is through so that I can get a good night's sleep :)

Kate spent some of the nap part of the evening sketching and writing, and playing with Tanqy.

Then once Nash woke up, he was all smiles and such a joy.

Watching Kate spend time with Nash reminded me SO much of when Ethan was an infant, both with Kate's interactions at the time with her little brother, but also with how Anna used to interact with Ethan when he was an infant.

 I think these two enjoyed their first experiences with one another :)

Then Adam and Jess came home, and our adventure was officially half over.

Colorado Trip - Part 1

This past weekend Kate and I made a trip to Denver, CO, to visit my brother, Adam, his wife, Jess, and their new baby boy, Nash.  I don't exactly remember when the first idea for this trip popped into my head, but it sounded like a good one from the beginning.  Sure enough, it turned out to be a great experience, even though I hadn't taken a trip like this since I was pregnant with Kate!

The details of traveling this distance with sweet Kate stressed me out a little in the weeks prior to our departure, but they really shouldn't have.  She's a great traveler and I learned that she is at the perfect age to turn an experience like this one into a pleasant adventure.

Early on Thursday morning, we drove to a local park and ride where we caught a bus to O'Hare airport in Chicago.  From the beginning, Kate's excitement was priceless and contagious.

The bus made a few stops before dropping us off at the terminal.  The first leg of our journey was a foretaste of how we would spent this time together ... taking pictures, playing ipad games, reading, drawing, etc.

Experiencing the excitement of airports again with a first-time-flier was so, so, so much fun.  Security, waiting at the gate, watching people ... all these things are so much more interesting if you're doing them the first time.

Kate brought along a notebook and a sketchbook as part of her traveling activities.  She wrote in her "diary" almost every day and drew a handful of sketches, both for herself and for her brother :)

Kate got the window seat, of course, and couldn't keep her eyes off of the view.  She even correctly identified the Mississippi River as we passed over it!  Thank goodness for the clear skies that day :)

As we approached Denver, we had our first views of the Rocky Mountains.  Kate took a handful of pictures, including this one, of the sight.

Adam picked us up at the airport and drove us to our airbnb.  (Adam and Jess have a small house, and a new baby.  I figured it was worth the expense to have a good night's rest :)  The house we found was a 100+ year old gem in a great, historic neighborhood which was located less than a mile from Adam and Jess' place.

Kate and I had a little room with two twin beds, and a bathroom virtually to ourselves.

Kate especially enjoyed all of the lizards decorating the rest of the home.

Every morning and most evenings, we walked the dozen or so blocks from our house to Adam and Jess', enjoying the fresh air, exercise, and sights along the way.

Thursday evening we joined Adam and company at their house to get reacquainted with Tanqy, the bulldog.

We were also able to finally meet this sweet boy.

More to come!