Eyes and Ears

Sophie's 11:30 appointment with ENT/audiology finally got under way today at St. Louis Children's Hospital around 12:45. The nurse held her down with a vice grip so that the ENT could get a look and clean out her waxy ears. She screamed so much that there were snot bubbles coming out of her nose and mouth and capillaries broke all over her little face (see red spots in pic above). He got a good look in her right ear and saw fluid and no movement of the ear drum. The left ear was even more waxy and Sophie had had enough so I asked for a break. He didn't get as clear of a look, but decided to stop as he had made his decision. (The left ear also had "some white" in it.) So, she's getting tubes in both ears at SLCH in 3 weeks. Audiology was cancelled for the day as it would be pointless now and they check hearing 4-6 weeks post surgery anyway.

Then, the eyes. Sophie's Strabismus surgery last May on her left eye was related to superior oblique muscle palsy. To 'fix' it, the surgeon cut and moved the opposite muscle to weakened it so that they would be even (layman's terms). This muscle effects more of the up and down movement of the eye. What Sophie has now is also Strabismus, but of the (bi)medial rectus muscle, or those that effect the left to right movement. As this Momologist suspected and insisted they check (though I'm sure they would have anyway), this time BOTH eyes are affected. Her eyes are not turning in severely at this point and her vision is good and pretty much equal in both eyes, which means her brain is not favoring one over the other. They're calling it intermittent esotropia. We were instructed to come back in 3-4 months or earlier if it gets worse. Hmm. I wonder what we might be doing around May 10th (Maybe's due date), and June (a possible move depending on the job situation)? So we haven't scheduled yet as I've got to figure that out.

We didn't see our regular opthomologist today as she was in surgery. Instead we had a resident. Nice guy, but I've got more questions than answers and will be calling to talk to the doc tomorrow. The resident said that this is not something that eye exercises or patching will help and that 'possible' bimedial rectus recession would be needed. However, once you start moving more than one muscle, you can end up with 'weird' things happening.

I know it could be much worse news. I will adjust to this new information and move forward. In the meantime I had a hot fudge sundae on the drive home.

Also, our dentist had the misfortune of calling to reschedule Alexander's appointment for Friday. This would be the 4th appointment in a row that they've rescheduled just days prior so that the dentist could attend a meeting or training. Guess what? I fired them and politely but firmly explained that they clearly do not value their patients' time. So now we need a new dentist.

On a wonderful note, it was 66 degrees in St. Louis and Kinlee was born today! I won't steal her momma's glory, so I'll hold back from revealing the details. We had planned to get a peek, but with our sickies, we opted to drop off some goodies with RK's sister instead. We'll see them in 3 weeks when we go back and I won't have to fight off the crowd! Congratulations to the family!

You're Fired

When was the last time that such a thing was wonderful news? I'll tell you when. When we were told not to ever come back, when we crossed an 'ologist off of Sophie's list. When Sophie was born there were 3 findings regarding her heart including a small muscular VSD, PFO and small PDA. None of the findings required any action beyond monitoring. Last February, Sophie had a repeat echo cardiogram that revealed that she only had a small PDA. Yesterday she had another echo and I am overjoyed to announce that the small PDA has closed on its own and we no longer have need of a cardiologist! That's right. Dr. Heart fired us and we couldn't be happier.

Other health updates are that Sophie is working on tooth number 8, a lower left molar. Next week we travel back to St. Louis Children's Hospital for an appointment with her ENT and audiology. This time they plan to isolate her ears to find out how each one is hearing. We have also been worked into the schedule with opthomology. After Sophie's last check up, we were told to come back in a year. However, the eye that she had Strabismus surgery on has begun turning inward and upward slightly, once again. I already knew that it is not uncommon to need repeat Strabismus surgeries, but am hoping that won't be the case.

In archiving my videos recently, it struck me how much she has changed in her 19 months on Earth. She's no longer my little baby. She's getting bigger and doing more every day. This update is not meant to be a comparison or brag and it is not my wish to upset any other extra special moms who I know love her. I'm proud of Sophie's accomplishments and I know you are too, just as I am proud of the little ones I've come to know and love.

Sophie has added the word 'boo' to 'peek.' Her favorite words are Daddy, baby, and Bubba (Mom/Mama comes in much further down the list). She waves and says 'bye bye' consistently and in the right setting. She even shouts it if the person she's greeting is far away. She's a millisecond away from cruising and pulls to stand like a champ. She could set world records in speed crawling. She kisses with puckered lips and sound vs. her original open mouth slobbers. She makes car and train noises when playing with Alexander's toys. She's developed a giggle and sense of humor that's contagious. Sophie nurses once at night and I expect to wean her by the end of the month. Straw drinking was a long and wholly worthwhile learning experience and without her ST, I'd be tandem nursing! She's great at putting toys 'in' (even when its other things like Daddy's slipper 'in' the bathtub or a ball 'in' the toilet). She has a great attention span, even with new toys, and gets very focused and intense. She seems to understand questions, like "where's Daddy?" because she often points with her index finger (though not every time). She often complies to requests like, 'hand me the toy.' She loves books and anything her big brother likes. In fact, she thinks her brother is the coolest guy around. She's such a social butterfly and she draws people to her where ever she goes. She also has developed a little princess attitude when she doesn't get her way, though it's so cute, its hard to get mad when she's being a stinker. In a word, we think she's pretty great.

(blog note: in the new menu bar, the VIDEO and CONTACT sections have been updated)

3 Check Ups

Today was a busy day at St. Louis Children's Hospital. It started in the Ds clinic where Soph weighed in at 21 and a third pounds, her height is 29 and a third inches, and head circumference is 44.3 cm. Generally, this is in the 75 percentile on the Ds scale. Also, Soph does not have 2 teeth coming in, she has 4!

Then we visited an ENT and Audiologist. Her tympanogram was flat in both ears. "No pressure peak for either ear suggestive of middle ear problems" (or little ear canals that didn't test properly). The hearing test results, " responses to speech and tonal/noise band stimuli suggest essentially normal hearing for at least one ear - with exception of responses seen at a mild loss level at 500hz and speech awareness." The vibrating bone conductor behind her right ear did not induce a response. Translation, she hears pretty good. Come back in a few months for repeat testing to figure this out a bit more.

Last was an appointment with opthomology. It was a follow up appointment from her Strabismus surgery in May. Her eyes look great and are level. Her vision is good with slight astigmatism in both eyes. Come back in a year.

Not a bad day all things considered. Our friends RK and Braska came over for the afternoon and were great company. I got to see Braska sign 'all done' and say book and shoe. RK is gorgeous, as usual. She always looks so nice and there I was in my schlumpadinka pj pants. But hey, at least I showered today.

Lunch with the girls

nap before opthomology

Now I'm up

Strabismus Surgery & My Fashionista

Curious as to what eyes look like in the days after Strabismus surgery?

UPDATE: Thanks for stopping by to all of our visitors world-wide from strabismus websites. If you have questions, please leave your email address in comments or email me directly (click CONTACT in the menu bar). I am happy to share more details about our experiences but will not be able to tell you if this surgery is right for you or your child. I also cannot tell you if this will cure your condition. Additionally, you can search this blog for strabismus in the navbar at the top of the blog or click the strabismus label below to see other related posts and pictures.

She's doing great regardless of how it looks. Besides, it gave us a reason to buy shades.

My future's so bright, I gotta wear shades!

Avenue of the Saints

1. Sophia's biopsy for Hirschprung's disease was negative!
(her new diet with more fruit, Yo Baby yogurt, and no bananas is working wonders!)
2. Sophia had surgery on her eyes today. (both eyes - tear duct probe, left eye - Strabismus muscle surgery) We are finally at home, resting.

We spent the weekend at a Bed and Breakfast in the Amana Colonies (Middle Amana) Iowa in celebration of M's little brother's graduation from the University of Iowa. After no internet access for days, and a huge change of plans, Sophie and I drove from IA City to St. Louis on Sunday by ourselves {on the Avenue of the Saints} and stayed overnight in the Parkview Hotel. As her surgery was in the morning we set our alarm and woke up in the middle of the night for a sweet potato picnic (as she was not allowed to eat after 1:30 AM). This morning RK and Braska Bear met us at St. Louis Children's Hospital and spent the day being our cheerleaders/gopher/chauffeur. They are staying with us for a few days, so its turned into a slumber party! We are blessed with wonderful friends. According to the docs the surgery went well. We won't know for 3 months if the Strabismus surgery was a success and we return in a week or so for a follow up appointment.

Meet Me in St. Louis Part 2

St. Louis Children's Hospital is really an amazing place. From the time you walk in the doors you are greeted with smiles. The security guard asks if he can help you find your way. Everyone is patient and they all seem to really care about the children and their families. Everywhere you look there are things to help take your mind off of the reason for your visit. On the outside of the building, there is a giant metal down spout shaped like an elephant's head whose trunk whisks the rain water away. The awning is a blue butterfly. Inside there are fish tanks, a magical ball machine, and colorful paintings on the walls, all done with the utmost attention to detail. A child's voice announces each floor in the elevators. Alexander's favorite place is the 2nd floor hallway where large model train tracks are hoisted around the perimeter of the ceiling encased in plexi glass. He's spent quite a bit of time there already chasing the 3 sets of trains that chug above his head.

On our first visit to Children's we saw 3 doctors and one therapist. Our time was spent in colorful office spaces and waiting rooms. The HD biopsy, however was a little different. For this visit Sophie was admitted and was fitted with a wrist band. We all needed name badges (Sophie's Mom, Sophie's Dad, Sophie's Brother). I expected to be taken into an office like the others we had been in. As Nurse Charlie escorted us, my heart stopped as a very, very premature baby was wheeled by in an incubator. My breath actually caught in my throat and I found myself choking up. I hadn't expected to see anything like that. I think I actually stopped walking for a second. Charlie gently touched my shoulder and whispered, "There but for the grace of God. Ok Mom, take a big breath in...now let it out. You've been there before haven't you?" Now Sophie wasn't that small when she was born, but she was in an incubator, naked, hooked up to tubes and beeping machines that look like fish finders.

To get to our room we passed by a busy nurses station (just like in our NICU) and saw lots of other children in beds with tubes and parents with worried looks and beeping fish finders (just like our NICU). I was surprised to feel so off kilter. It was a relief to get into our room and shut the door.

Nurse Charlie was lovely. She took her time explaining the procedure. She asked if we had any questions and let Sophie and I examine the instrument that they would be using to do the HD biopsy.

It looks complicated and scary, but only the silver part is inserted. The syringe-like part gets pulled back to create the suction and the trigger is pulled snipping off a small piece of tissue that has been sucked into the side of the silver part (hence the name, rectal suction biopsy).

Sophie's doctor was Australian and had a lovely accent and bedside manner. He took 3 samples and was done in a matter of moments. As the tissue is taken from an area that doesn't have pain receptors, Sophie barley fussed at all. We'll get the results in 7-10 days.

That night for dinner we visited Blueberry Hill in the Loop. M was in heaven as they had his favorite childhood pinball game "the Twilight Zone" AND Fat Tire on tap.
Alexander made lollipops out of cheddar cheese balls and then started eating the rest of his dinner with a toothpick.

On the way back to the car we popped into Vintage Vinyl Records and stepped back in time. M and I met in college while working for an independent record store. We both thought these stores had gone the way of the dinosaur and were so happy to find this place. As we perused the CDs encased in plastic shucks (those darn things broke many a fingernail back in the day) and records (as in actual vinyl - the only real way to listen to music) we were near giddy. The clerks with scenester clothes and bored expressions made me smile. There was even a live "performance" of local rap artist Ruka Puff promoting a mixed tape of St. Louis rappers. It was quite loud and the kids looked confused as to why we would be there. We figured a few minutes wouldn't do any real hearing damage. The best part was when M discovered a cash of Blowfly CDs. It wasn't just that they had at least 10 copies that cracked us up, but that they were filed next to Kids Corner CDs. {For those who are unaware, Blowfly's bio reads, "Before there was Kool Keith, Old Dirty Bastard or 2 Live Crew - before there was hip hop, for that matter - there was Blowfly, performing X-rated songs with a funky groove." I can't even list titles of his songs here. Goggle him, you'll see.} Only an independent store like this and the one we worked at stock this type of... art?

Alexander got a special treat as we came upon an old trolley car nearby which promptly became his favorite. M has decided that it would be amazing to get a job at Wash U just so he could shop at Vintage and stop by Blueberry Hill for the beer and games.

Then today was Sophie's pre-op appointment with opthomology.

Marlo retested her eyes and its true, her left eye is turning in a bit more than during our last visit (I thought so and should have trusted my Momologist instincts). But, she got even better measurements this time and we will proceed with Strabismus surgery on her left eye and nasal lacrimal tear duct surgery on both eyes on May 19th.

All things considered, it was not a bad trip.

Meet me in St. Louis

Dilated Eyes - 1st eye exam

We went to St. Louis Children's Hospital yesterday to get Sophia checked out. We saw 3 doctors and a speech therapist.
Here's the skinny:
Sophia has misalignment of the left eye due to a weakened muscle that she's had since birth. She is so smart that she has figured out that when she tilts her head, she can correct her vision as she's likely been seeing double. She'll need Strabismus surgery (eye muscle surgery) and while they're in there they'll do a nasal lacrimal duct surgery on both eyes as she has had lots of yucky discharge for a while. Dr. C said, "I see she tilts her head." I said we started Physical Therapy for Torticollis around 6 months of age. She said she just recently gave a talk about misdiagnosis of Torticollis when it's Strabismus to a group of peds docs. PHARFIGNEWTON!!! The good news is that her vision is very good regardless.
Next, her new GI, who he says has spent a lot of years working and studying Hirschsprung's disease, is especially concerned that her constipation may be caused by this. She needs a rectal suction biopsy and then we'll go from there. I did a google search for him and Hirschprung's and he's listed many places. In layman's terms, this is when there are missing nerve cells in the bottom segment of the intestines. This causes the stool not to move all the way through the end of the intestines. Repair is done by cutting out the effected part of the intestines and reattaching it to the anus. (Her duodenal atresia was the uppermost intestine that was blocked and was cut out and reattached to the stomach.) In the general population Hirschprung's occurs in 1 in every 5,000 but with Down syndrome it is 1 in 75.
We're scheduled for the biopsy on May 8th and pre-surgery appt. with opthomology on May 9th. Eye surgery will be May 19th. We'll have to wait and see what the biopsy tells us about the next steps there.

For you detaily people; click on the bold type for information on Hirschprung's disease,
and on Strabismus, and on Nasal Lacrimal Duct Surgery