Prayers for Alex & Sophie

Meet our good buddies Nancy and little Alex.  I met Nancy within the first couple of weeks of moving out here and we have become great friends.  On Thursday, January 3, 2013 Alex will be having his tonsils and adenoids removed, otherwise known as T&A surgery.  It is fairly common for people with Down syndrome to have T&A surgery and many in our community have reported excellent results.  Alex has been having seizures recently and is on medication to treat them.  His mama hopes that the T&A surgery will mean he can get more oxygen as he is breathing so he can stop taking the medicine.  Alex will also have surgery on one of his testicles.

Nancy and I did not plan it this way, but on the very same day, Sophie will also be having T&A surgery and she will be getting a new set of tubes in her ears.  Especially as she has floppy airways (tracheomalacia and laryngomalacia), her Anesthesiologist has back up plans ready to go if her airways become compromised.  We have high hopes for this tune up.  With new tubes, the fluid that has built up can drain which should lead to better hearing and improved speech.  Once the tonsils and adenoids are gone, we hope she will be much healthier and able to fight off viruses that lead to infections.  Currently she catches every cold and flu virus that she comes into contact with.  Also, Sophie is not a good eater, (understatement of the year).  We hope that as the T&A surgery will create more space in her throat, that she will start eating more foods.

*Alex is due to the hospital at 10am and Sophie at 11:15am.  They are going to be hungry as they aren’t allowed to eat after 11pm.  The surgeries are fairly routine for the good folks at CHOP.  Both little ones will be staying overnight for a minimum of one night and both with their mamas by their side.

Please send good thoughts and prayers on Thursday, January 3rd that my baby girl Sophie and our dear friend Alex have successful surgeries, good pain management, and quick recoveries.  If you could spare a thought of support for those of us in the waiting/hang wringing room, we would appreciate it.

Ear Tube Follow Up and Audiology

Most importantly, it was a good visit. In and out in 1 hour to ENT and audiology is a world record. Sophie's ears look good and the hearing test went well. The results are pretty much the same as in October. Her hearing is pretty good with a mild loss in the low pitches. Follow up in 6 months.

The trip, however, was another story. We got into town with a smelly engine and without a stroller with which to haul our stuff. While I took Soph to the appointments in a borrowed hippo shaped wagon from the hospital, Mark and Alexander found a shop within walking distance of SLCH. Appointments were done by 12:30 but the car hadn't been checked out yet. We spent the day between the 2nd floor entry way with the trains that are mounted around the perimeter of the ceiling and in the cafeteria.

We heard from the shop that the AC compressor was bad and they did not recommend trying to drive it home. If the belt broke, it would possibly cause serious damage to the engine and we would be stuck on the side of the road. Mark's dad concurred. They couldn't get to it until today, so we had to decide if we would be staying overnight or renting a car to get home. Staying would have meant rescheduling ST, the tub surround repair (major leak into the basement from the main floor) and Mark missing 3 classes. That and we had no supplies or Sophie's meds or extra food out for the cats. Thankfully, RK and Julie came to the rescue and drove in from St. Charles. We are borrowing RKs car and returning it, probably Wednesday, which meant that we were able to drive the 3 hours and be home last night. Thank you RK! On the way home, driving through the rain, Alexander had a potty accident and he ended up with a brand new pair of St. Louis Cardinals pjs. I was fully convinced that my water would break (as we're not technically supposed to be travelling out of town) and well, it would have fit the theme of the day.

I spent the day hysterically laughing to the point of tears, which is dangerous given my near full term pregnant status. The car could have broken down in the rain on our way, causing us to miss our appointment and stranding us, who-knows-where. It didn't. We thought the over due oil change may have been the problem and were planning to just get an oil change. Had we done that, instead of taking it to a shop, it would likely have broken down on the way home. Had we remembered the stroller, Sophie might not have had such a good nap in the cafeteria, in the bed we made for her in the hippo wagon. She doesn't nap well in the stroller. Had we left right away after the appointments, I would not have had the yummy onion rings that I love. As our little comedy of errors continued to develop, I couldn't help but see quite clearly how much worse it could have been.

2nd floor entry, trains

Cheesy post-nap grin

Alexander working hard on Noggin.com in cafeteria

Sophie's Ear Tubes

It's been a full week since our trip to St. Louis Children's Hospital where Sophie got tubes in her ears. Grandma Paula hung out at home so that Alexander could go to preschool. He did just fine, but I had a harder time. It was my first night away from him.

We got in around 9pm and settled into our hotel. Sophie slept most of the way there, so she ended up staying awake until 11:15. That was OK because I could give her food until midnight and then she needed to fast.

SLCH is beyond good at what they do. Click here for a previous experience describing the care you receive there. We arrived at Same Day Surgery by 7:15 and by 8:34 she was headed back to surgery (scheduled for 8:30). I love it when a procedure happens on time, especially when fasting is required.

It was really fast and she was done 30 minutes later. Super cranky and out of it, we tried to comfort her and get her to drink apple juice. More quickly than I imagined possible, we were leaving. She did vomit up snotty juice as soon as we left and were in the car, but after that, she was better. It took a while to fully come out of sedation.

We met our very good girlfriends at a mall. (Why hang at the hospital when we can shop?) Plus, they had a Stride Rite and our only local store that carried them closed. Sophie needs a 4XW, which you just can't get anywhere. RK is a super mom, looking gorgeous, lugging 2 around as if she's done this forever, and does well multi-tasking. Click here for their pics of our meet up. We were so happy to finally meet Kinlee and see our old pals.

Mark always notices the quirkiest things. This sign at Dillards disturbed him, so he snapped a shot.

The next day Soph needed Tylenol, but has been doing great with zero drainage. We go back for a follow up and appointment with audiology in 4-8 weeks (which we will try to coordinate with her follow up eye appointment). So far, so good.

Tubes

So, we're chillin in the hotel in St. Louis. Early tomorrow morning we check in to SLCH so that Sophie can get the first set of tubes in her ears. I've added twitter back to my sidebar, but as this is such a quick procedure that I may not have time to add anything. Afterwards I get to gobble up the 3 week old Kinlee! (oh, and see her big sis and mommy). I can smell the sweet new baby smells already!

On another note, after being on the waiting list for more than a year, we are going to receive Respite! That's 15 hours a month (40 hours quarterly) of help watching Miss Soph so that I can get housework done, run errands, or (gasp) get out of the house!!! Our regular sitters are under 18, so we'll probably use some of the respite workers that DSC already works with (many of whom are special education students). Our intake meeting is this week and then we're good to go. This is a real blessing for our little family.

Lastly, the elevator in our hotel has a button that simply says, "earthquake." hmmm? Do I really have the power to cause an earthquake simply by pushing that button?

Ears, 'Cept Different

Not to be left out, today we discovered that both of Alexander's ears have "bad" ear infections that "look like they've been bothering him for a while." Based on his other symptoms (like not eating much and sleeping in today till 11:40) and hearing his cough, doc says it could be bronchitis or pneumonia as well. Didn't need to officially diagnosis the last two as the azithromycin would help all of it. Poor guy has been miserable for nearly a week but I had no idea he had an ear infection (or 2 rather). He's never had one before. Rapid strep was negative and they're doing a full culture.

His daddy is really sick with a cold. Since he's prone to pneumonia and we were already in the building, I made him go to convenient care. While waiting I took both kids into the women's room. Alexander made an escape. Just as I was about to get security as he could not be found, a nice lady in the waiting room pointed out the table he was hiding under. (sigh) People actually giggled as I hauled the two of them outta there to the car to wait. Karma will get 'em.

Sophie and I have the cold crud and when momma's grumpy, everybody's grumpy. Blasted winter! Now back to American Idol. Ya, I admit it. I really like the guy singing now who recently lost his wife. Nice guy. Good pipes. Hope he goes far. Same goes for the piano player who happens to be blind.

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!