Hazel's Eye Update

Over the winter months, Hazel came down with three consecutive eye infections caused by normal winter sickies and a blocked tear duct. After the third infection, we decided it was time to head to Delaware and have her eyes looked at by an ophthalmologist. Her tear duct just wasn't opening enough for her tears (as well as bacteria) to run out as they should. We noticed that her eye was a puffy after waking up, and crusty almost every morning.
Heading down to the hospital for her appointment on Friday was a little nerve-wracking. I was fully expecting to schedule surgery to open up the tear duct. But, as always, the friendly staff at the hospital calmed all my fears and anxieties. We are so blessed and lucky to have access to such a wonderful facility, less than 2 hours away.
Because Hazel's appointment was scheduled for 1pm (right after lunch), we arrived early so we could grab a bite to eat in the cafeteria before being seen by the doctor. It also gave us a chance to meet up with a Brave Little Warrior, Jude and his family. I always love meeting with other families in the LP community FAMILY.
After our delicious (yes, I referred to hospital food as delicious.) meal, we made our way up to ophthalmology. I admit, I was expecting the worst. You see, Hazel does not like doctor's offices. Even when she's not the patient, I have to reassure her that it's not her turn this time to prevent the waterworks. Also, she typically falls asleep for her nap by 1:30. However, she did surprisingly well. With the exception of the dye they used to check how well her tear duct was draining, and the drops used to dialate her pupils, she was very compliant.
Even though she almost got away with swiping a toy from the office. Oops!
While her tear duct is indeed blocked, Dr. Hendricks decided to take a wait-and-see approach, unless she requires anesthesia for anything else in the near future. As long as her tear duct stays healthy, she does not want to put under general anesthesia unless absolutely necessary.
We did find out something else, though. Hazel's vision is not what it should be at this point. Her left eye is far weaker than the right, and left untreated, could lead to lazy eye. She also has a slight astigmatism in her right eye that needs correction.
We are so thankful that Dr. Hendricks was so thorough with her eye exam, and was able to catch her vision problems before needing further intervention. Hazel will be getting her first pair of glasses very soon. I'm pretty excited to see what a difference it makes.
Oh, and not to mention how adorable she is going to look.

I'll just leave you with a few pictures I took while we were waiting to see the doctor...

Hazel Update

For those of you asking how Hazel's appointments went last week:
1. Thank you all for your prayers and words of encouragement. It is easy to feel alone as a "special needs" mom. It means so much to me to know that so many people care about and love my girls so much.
2. Annabelle's behavior and patience through the morning was amazing! After a long car ride, late dinner, early morning, unfamiliar meals, and being away from home, we were prepared for the worst. But she gave us her best. We were in appointments from 8:30-11:30. Not once did she whine or complain. In fact, she was very curious, and excited to see Hazel's x-rays. Maybe we have a future x-ray technician on our hands?
3. I cannot say enough about the Ronald McDonald House! There was a moment when we thought they wouldn't have a room available for us, but they offered a room voucher for a nearby hotel since we had booked our room ahead of time. (Because they never know for sure how long a family will need a room, they cannot guarantee room availability). However, they called us back a few hours later, and reconfirmed that we would indeed have a room in the House. While there, the girls were able to enjoy the play rooms, and we were able to enjoy having hot meals provided for us.
4. Hazel's doctors are very happy with what they saw. Hazel's spine looks wonderful, and she is showing no signs of hydrocephalus or other complications related to her Achondroplasia. Yay! They want to see her again in 6 months for another followup.
5. She slept enough during her sleep study to get sufficient data. After screaming, and pulling at the nasal cannula  (used for monitoring oxygen flow) for a full 2 hours, she finally exhausted herself, and slept until 5am, only waking 2 or 3 times when she lost her pacifier. This time around, I personally slept better than her last sleep study, as I knew more of what to expect.

All that being said, we had a very wonderful trip to Delaware. We even got to meet with another LP family for a playground play-date.

Used with permission from http://www.aisforadelaide.com

Sleep Study

Once Hazel was diagnosed, our first order of business was to schedule a sleep study. Sleep study? She's the better sleeper between her and Annabelle. She has slept through the night since birth. There's nothing wrong with her sleep. Or is there?
The questions and doubt flooded my heart. She sometimes snores, especially when she's in her car seat. And she does that funny thing with her head to open her airways. Maybe she's sleeping too soundly. Maybe I'm sleeping too soundly. Maybe, maybe, maybe....
Deep breaths.
Count back from ten...
Nine...
Eight....
I can do this.
Seven...
Six....
Five....
One day at a time.
Four....
Three...
One step at a time.
Two...
One...
Okay. I can do this. We can do this. We will do this.
I had no idea what to expect as the day approached. I Googled, Facebooked, and did my research. I read blogs about other experiences with sleep studies. I saw pictures of other babies hooked up to all the sensors and wires. In doing so, I mentally placed Hazel in those hospital cribs, with the scratchy sheets and gauze wrapped around her face, wires surrounding her tiny body My heart broke. I was still at a loss.
The weeks passed, and the day quickly arrived for us to load up, and travel back to Delaware. Annabelle was so excited, as her and Daddy were going to sleep in a "princess bed " at the Ronald McDonald House. I was to stay with Hazel through her sleep study.
We had an appointment with the pulmonologist in the afternoon, which set my heart and mind at ease. The team at Nemours was friendly and welcoming once again. I cannot say enough for the staff there. Every person in that building greeted us with smiles, answering any questions, and extinguishing any concerns we had.
After we finished up with the pulmonologist, we took advantage of the beautiful weather and the playground. Annabelle was getting antsy, after being stuck in the car all morning, then playing quietly through Hazel's appointment. She was excited to have a chance to run, climb, slide, and swing her energy out.
Before long, we had dinner, and headed back to the hospital. Hazel took a catnap as we navigated the halls towards the sleep center. I got myself turned around at one point, and was helped by a kind maintenance worker, who pointed me in the right direction.
The room was plain. Nothing special about it. A couch on one side, a bed on the other, and a crib in the middle. It was all set up, waiting for Hazel.
This is it.
She was rather tolerant of the wires as they were glued to her hair and face. The technician wrapped a roll of gauze around her head and face to hold all the sensors in place, and wrapped more sensors around her torso. She looked a little silly, with her face all scrunched, peeping out of the gauze wrap. She didn't seem to mind at all.
She nursed.
And fell asleep.
And just like that, the study began.
She only woke a few times, and was settled back down without needing to be held, or nursed again. She really was a champ through the whole procedure.
6:30am came around, and the study was over, just as quickly as it began.
She was cleaned up and sent on her way.
That's it? We're done?
"We will have your results in about two weeks," we were told.
Two weeks? I  have to wait another two weeks to find out if my baby is breathing in her sleep?
When we received the results of the study, we were told that she showed no signs of central sleep apnea. In other words, she's not holding her breath in her sleep. This can be common in achondroplastic children, and can signify bigger proplems. Whew! However, she did experience some obstructive sleep apnea. Snoring. Her airways are so tiny, that any slight inflammation, irritation, or even a little boogery nose, can affect her breathing more than an average child. It wasn't bad enough to cause a need for a CPAP machine, but she was prescribed a few medications to help clear up her airways. She will also have a follow-up study in November, to see she is doing.
Yup. We get to go through it again.
But this time, I know more of what to expect.
Yes, she will be older. Yes, she will probably put up a fight next time. No, it will not be fun.
But it's in November.
Today, I am dealing with today.
Today, she is learning to roll, and reach for toys.
Today, she is starting to babble, and blow raspberries.
Today, she is smiling all the time.
Today, I am choosing to live in the present.
One day at a time.