Wednesday, March 20, 2013

Omaha trip

We spent the last couple days in Omaha.

Bailey has to see her dentist every 6 months and her cleft team just once every year at this point. (To see the links to her particular care givers, click HERE.) Thankfully we were able to schedule them on the same day and save a trip.

We headed down early the first morning so we could meet Felicia and hang out for the day. We decided to go to Pump It Up - an inflatables play place. It was cheap entertainment for all and also a great workout for all the adults involved.



{I have no pictures of Bailey because the girl didn't stand still long enough for me to ever take one!}

It was fun because the adults could go with the kids into any of the areas. Bailey and Avery's favorite was the slide. And boy, was that a workout for Mama. Whew! Carrying a 30-pound toddler up an inflatable staircase is a lot of work. Eventually Bailey figured out to do it herself and then became pretty independent about it. Jared, Fe, and I were pretty shocked at how tired we were after just an hour and a half.
We went and ate some lunch to refuel before hitting the hotel.

Now that we have 3 kids, it is getting a little hard (and probably inconvenient) for us to take over Fe's house for the night, so we got a hotel room. Jared gets a cheap state rate, so we figured, why not? The fact that there was a pool was also a big bonus. We figured that between swimming in the hotel pool and jumping on the inflatables, the girls would be exhausted come bedtime. Yeah right! (More on that later.) Both Felicia and Catrina came over to swim, too.

Both girls had a good time swimming.

Bailey was very independent with her Puddle Jumper on. She swam back and forth across the pool and jumped in over and over all by herself.

When Avery wasn't being thrown around by Jared, she spent her time trying to sneak into the hot tub. She had the naughtiest look of satisfaction and delight whenever she succeeded. {Family members: I know you can picture this exact look.}

After some pizza in our hotel room, it was time to wind down for bed.
Both girls got a quick bath (where Avery only tried to eat the bar of soap twice - whose child is this?!), put on their pajamas, and climbed into bed with their bunnies.



And don't be fooled by Avery's tired-looking face; these children did not give up without a fight. I think that after about 2 hours, they finally fell asleep around 10 pm. And just because they were sleeping doesn't mean that we got any rest. Bailey snores louder than most grown men. She finally cut that out around midnight, at which time Graham woke up from his 2 hour nap. I fed him and put him in bed with me, where he slept for the rest of the night.

Jared got the worst end of the sleeping situation. He originally started out with the girls, trying to keep them from hitting each other or messing around. After they were asleep he joined me until Graham took up room. He moved back to bed with the girls. Apparently Avery is extra lovey in her sleep. She kept cuddling up to him and stroking his arm, keeping Jared mildly awake, but it was the nipple pinch she gave him in the middle of the night that woke him up for good.

Morning came all too soon.
We headed off to Bailey's 8 AM cleft team appointment at Boy's Town.

Her cleft team consists of every specialty that a child with a cleft might need:
  • pediatrician
  • nurse
  • plastic surgeon
  • dentist
  • orthodontist
  • geneticist
  • ENT doctor
  • audiologist
  • speech pathology
We usually meet with all those people, with the exception of the genetics doctor since it doesn't really apply to us. It is extremely convenient that we can meet with the entire team of professionals all in one location at the same time with just one $10 copay. It's amazing.

She met with the dental staff first. Surprisingly Bailey now has a tooth coming into her cleft - a tooth we previously thought would be missing. Her mouth is going to be a huge work-in-progress, but for now we are just at a point where great tooth brushing is the only concern. Cavities are big problems for kids with clefts due to the already large chunk of bone missing, so we are doing the best job we can with oral hygiene. (Which is why we are mean parents that make her brush her teeth whether she wants to or not - no skipping!)

Following dental was audiology . This is the first year that she was able to cooperate with the hearing tests, so she went into the sound proof booth and played games corresponding with the tones she was hearing through the headphones. Along with other tests and an exam, it was determined that she is suffering from some mild hearing loss, most likely due to the fact that both of her T-tubes are clogged completely with ear wax. We have had this happen before - back when she was about 5 or 6 months old. {She is a very waxy child.} There isn't much you can do to prevent the wax buildup and she had to have her tubes removed and replaced at 9 months when her palate was surgically repaired.

Next up she saw her plastic surgeon, Dr. Miller, whom Bailey has always liked. She is always so cooperative with him: smiling for the pictures he needed to take and letting him get a good look in her mouth. 
We discussed the next step in her surgical process - a revision of her previous lip/nose repair surgery. As you can see in pictures, her scar site has a slight bump there and her nose is pretty flat. Dr. Miller plans to shave off the bump and try to make her upper lip more symmetrical, while also reshaping her right nostril, which will help her nose have a more natural shape. This surgery can be done anytime - usually before a child starts school - so we are probably going to do it sometime in the next few months. It is just an outpatient surgery, so no hospital stay  - yippee! We are blessed to have such amazing insurance through Jared's job, and it is a relief not to have to worry about the cost of these procedures.

The new ENT - Dr. Lusk - came in next.
We are both absolutely overjoyed that there is a new ENT for the team. We HATED the last one. I was always praying Jared would just play nice and not go off on him. We just couldn't handle that guy. Ugh, he was horrible. (You can read about part of why we disliked him HERE.)
Anyway, I digress...
He examined her ears and found that yes, they are both plugged with wax and it can't be manually removed without removing the tubes. Also, she has fluid behind one of the tubes, which is probably causing the ear pain she has been having. So our only choice is to have them removed and replaced. We were hoping to just do this with the upcoming plastic surgery revision, but it might have to be done separately since it needs to be done soon. We will find out in the next couple days what the game plan is.

She saw the rest of her providers just casually as they popped in and out during our meetings with plastics and ENT. The speech therapist was impressed with her language skills and said she is right on track for her age with absolutely no cleft-related speech problems. She will have to start being monitored through the school system when she starts preschool in the fall, but for now is doing great.


After the cleft team visit we made a very-painful-on-the-bank-account trip to Costco and then met Fe for lunch before going to the dental appointment.

It was much like last time, with the exception that this time Bailey had x-rays. It turns out that she doesn't have a permanent tooth for the cleft, which is what we figured. So in the future she will need a dental implant, but that is many years down the road. She did pretty well getting her teeth cleaned, especially since she was crabby and running very low on sleep. The promise of some Disney princess stickers and a toy from the machine was enough to enlist her cooperation.

And after the dental appointment we were free to finally go home.
Hallelujah, praise Jesus!
It was only 36 hours, but we were wiped out. Thankfully everyone slept well last night (okay, everyone but Jared who had to work). Even Graham was nice to his mama and slept a full 9 hours straight. (Fingers crossed that he keeps that up!) 

2 comments:

  1. You are amazing. Jane McCurdy

    ReplyDelete
  2. I got side-tracked after reading about the nip tweak hahaha I can only imagine!! haha

    SUCH GOOD NEWS all around!! Except the whole ear thing ... that stinks! Luckily its nothing major (meaning permanent damage or something) but getting tubes AGAIN just sucks!

    I so happy to hear that everything is on the right track and PTL you have an incredible team!!!!

    ReplyDelete

I love comments. Seriously, LOVE them.
So go ahead and let me know what you think.