Life with the Latham...Gracie's perspective

Gracie's top ten
Latham appliance observations...

1. I can no longer suck my thumb and finger due to all the metal and plastic in my mouth...much to my surgeon's delight and my profound disappointment. :(
2. The width of my cleft is getting visibly smaller every day!
   
3. I am ending up in Mommy and Daddy's bed almost every night. Mommy is not complaining, but seems to be sporting these black bags under her eyes and drinking lots of coffee lately.
4. Every day I am pronouncing sounds and words better!
5. I have my very own water pic to clean my mouth, and Daddy lets me play with it to make the whole process way more fun.
6. I can't eat some of my formerly favorite foods because they can get stuck in my new appliance. :(
7. I have a new favorite food...Soup! The more noodles, the better...
8. Mommy has to use a tiny little brush to clean out my mouth all during the day. Not so fun, but I let her do it.
9. The toughest part of my day is when daddy has to tighten the screw in my mouth. By the time we're done, my Mommy and sisters are usually crying right along with me. Not quite sure why they are, but I know why I do - it hurts! :(
10. Mommy tells me this is a big step closer to my big surgery and my new mouth that God is using Dr. Matthews to fashion! She tells me I am very brave!
    

Impression Time Part Trois

The best way to eat mashed potatoes...With 2 utensils

Our trip to Charlotte yesterday went very well. Poor little Gracie Shu knew the second we stepped into the Doctor's office what was going to happen. There's something about that silent cry with the tears streaming down the cheeks that kills your heart. Then there's the "hear-it down-the-hall" crying as the doctor is making the new impression. So hard.

God placed His fingerprints in many places too. We met a gentleman at a rest area who has a granddaughter adopted from China. Talk about a proud Grandpa! While waiting at the office we met another adorable little Asian sweetie with her Mama. They just returned from China in September, and were there to have the same procedure as Gracie. Her lip & palate are both affected as well.
Oh, and on the way home we encountered THIS - Good timing eh?

Please join us in praying that this impression will be acceptable to the doctor who will be making the device for Gracie. We would love to have her first surgery done before Christmas!

Wouldn't you know she would fall asleep 5 minutes before her appointment?!!

That odd looking mold is the reason I've had a coffee from the Gaffney Starbucks
3 different times in 3 months!

Is the Third Time REALLY THE Charm?!!

Pure Joy!

The discovery of the dress up box!

UGH! We are heading back to Charlotte next Tuesday for Gracie to be fitted for her palate appliance...for the third time! We thought we would surely have had her first procedure behind us before Thanksgiving, but that will not be the case. The doctor who makes these devices wants a more detailed mold made of her palate because for an older child, it needs to fit perfectly, and I can appreciate that. We're getting this routine down pretty good by now...No food for 3 hrs before our appointment, One terrible minute of the actual fitting, and then a quick lunch before heading home! The nurse was so apologetic, but I told her I understand. We're just one more step closer in the process! I'm grateful that God's hand is so evidently in all of this. We have to trust His timing!

Happy weekend!!

Updates!

Has another week passed by already? I mean, really??! Sometimes I look around at the end of a day and wonder if I accomplished much...Then I remember there's a toddler in the house again! The new normal is busy!

Gracie has a pretty full schedule, and she loves it. An early interventionist visits once a week for an hour, and brings a huge bag of great toys. (Don't tell Gracie Shu that they're actually teaching her playing and reasoning skills) Ami oversees Gracie's other therapies which include speech therapy twice a week and soon to be added occupational therapy once a week. Yeah, we know how to party around here! That pretty much takes up our mornings, and that sweet girl is more than ready for her afternoon naps before it's time to go sit in car lines for her siblings. I am honestly grateful that these services are available to us, and even more grateful that they are offered here at home!

Gracie and Miss Ami

Today we headed back to Charlotte on what we thought would have been her surgery day. Gracie needed to have another impression made of her palate, and round 2 was not as rosy as round one. Evidently the doctor who makes the Latham device was out of town for a while, and a new mold was needed so that it would be a perfect fit as she is growing quickly! The impression took a little longer to set this time, and Gracie was good and mad by the time we were done. She kept signing for her Daddy to pick her up and rescue her. That was tough to watch. Hopefully we should be back in a few weeks for the actual procedure!

We also had an appointment with the ENT who will be putting the tubes in Gracie's ears. We were SO impressed with this doctor and his manner with Gracie. On the way up this morning my brother sent me a text telling us to have fun watching God at work at our appointments. I loved that. We definitely sensed God's hand in this visit. He totally confirmed our decision to go with the Latham before palate surgery. He said he has seen over and over that in the long run this process is so much better for mouth and speech development for someone like Gracie with a significant cleft. He also spoke so highly of our surgeon, and said the times he has witnessed him placing the Latham in surgery, it fits like perfection! (Hence the re-making of the impression!)
God is great, and is greatly to be praised. He continues to lovingly Father us through every step!

And so it begins...

Chick-Fil-A - How do I love thee?

Let me count the ways

One bonus of the day - meeting my Uncle John
for the first time

The Starbucks in Gaffney - The perfect halfway stop
for Mom & Dad's caffeine fix & my diaper/outfit change!

Mommy's new reality - An 18 month old = a messy house!

Yesterday we took the first step in the process of Gracie's cleft treatments. After a lot of prayer, and meeting w/ three different surgeons, we decided to proceed forward with a surgeon located in Charlotte. His method of treating Gracie is different from many surgeons and we feel confident that this is the best plan for our little girl!

Generally, a surgeon will repair the lip before the palate, but we are taking a different route. Our surgeon really values speech and palate development before the cosmetic aspect with his patients. In Gracie's case we're dealing with a significantly wide cleft palate and she's also a thumb sucker which doesn't help matters! Yesterday Brian and I took miss Gracie to Charlotte to have an impression made of her palate. Fascinating stuff - kind of like one of those plaster craft kits! Anyway, she was quite upset for the one minute it took to complete the process, and was soon in her Mama's arms to be consoled. She was not allowed to eat for three hours before the appointment, so she was starving when we left. We ate lunch @ Chick-Fil-A and on our way home we were able to catch up with our brother-in-law John who was in Charlotte on business. He got to meet his new niece and Gracie got the chance to run off some energy in a Waffle House parking lot before the ride home!

A device called the Latham Device will now be custom made for Gracie's mouth. It is a plastic and metal device attached to the roof of the mouth. A metal screw, which is part of the device, will be periodically tightened to bring the palate closer together prior to the actual palate surgery.
Within two to three weeks we will hear back from the doctor when the device is finished and we will then schedule a date to have it placed in Gracie's mouth. This will be considered her first surgery, but will not require an overnight stay.

Life seems crazy between school schedules and all of Gracie's various doctor's appointments. Last week was her first visit to the dentist...not pretty! This Friday we see an ENT to find out if she will need tubes in her ears or not. She's such a trooper, but is tired of people taking her from her Mommy and looking in her mouth and ears! She is also having some serious sibling withdrawal as her sisters and brother are now back at school. She is my shadow and seems to think she should be held all day long. Who am I to deny her that?! :) I wouldn't trade this new normal for anything. We are so blessed to have her home, and as our friend Tricia said, so thankful that she is in a place where she is able to receive the medical care she has needed. We can't imagine our life without her!

Sorry to have written War and Peace Part Two , but it's been awhile, and so much has been happening. Would you take the time to go HERE and pray for this family today? They need to see God move mightily on their behalf.