Thursday, September 29, 2005

Appointment with the ENT

Our appointment with the ENT went well. We are going to proceed with getting tubes placed in Rachel's ears.

Tubes are placed for more of a preventative measure rather than based on her history. Right now, with Rachel's palate completely open, any built up fluids just drain through her open palate. But once Rachel's palate is closed, those muscles won't work well enough to force the fluids out of the estachian tubes, so the fluid will just sit there, which can cause ear infections, which could result in temporary hearing loss and speech problems. So tubes are placed to prevent all those problems.

Now it's just a matter of coordinating the schedules of our surgeon and the ENT.

Thanks again for all those you were praying for Rachel's appointment this morning!

Tuesday, September 27, 2005

Update on Waiting for an Appointment

I called the plastic surgeons nurse first thing this morning and actually got her and not the voice mail. Long story short, she would talk to Dr Martin and then would get back with me. I waited until after lunch and then called her to see where we were with things.

What had been decided to do, is to give all of Rachel's information to the surgery scheduler and get her working on an authorization from our insurance for the surgery and get a surgery date. And then Dr Martin can go to the ENT and say he has a cleft palate repair patient needing an evaluation for placement of tubes and what the date of surgery is. And would get us worked in to see him that way. That was how things were going to be as of early this afternoon.....

Late this afternoon, I got a call from our plastic surgeons surgey scheduler that we have an appointment with the ENT for Thursday morning!!! So that was great news!!!

I feel like things are finally happening. I hate that feeling of being in limbo and basically helpless, waiting on people trying to get us worked in, etc. We have an appointment with the ENT on Thursday and the scheduler is supposedly working on getting authorization from our insurance!!

"There are No Accidents"

My sister-in-law gets emailed devotionals by Elisabeth Elliot, she forwarded me this devotion this morning. While Rachel's birth defect isn't as severe as the ones mentioned in this devotional, I do feel we "have been chosen in a special way to display His unique Masterwork". I thought I'd share this on Rachel's blog for any others who follow Rachel's Journey and may have been "chosen" in some way or another.

There are No Accidents

Author: Elisabeth Elliot
Source: Keep A Quiet Heart
Scripture: Psalms 139 James 1:2

My friend Judy Squier of Portola Valley, California, is one of the most cheerful and radiant women I know. I met her first in a prayer meeting at the beginning of a conference. She was sitting in a wheel chair, and I noticed something funny about her legs. Later that day I saw her with no legs at all. In the evening she was walking around with crutches. Of course I had to ask her some questions. She was born with no legs; she had artificial ones which she used sometimes, but they were tiresome, she said (laughing) and she often left them behind. When I heard of a little baby boy named Brandon Scott, born without arms or legs, I asked if she would write to his parents. She did:

"The first thing I would say is that all that this entails is at least one hundred times harder on the parents than the child. A birth defect by God's grace does not rob childhood of its wonder, nor is a child burdened by high expectations. Given a supportive, creative, and loving family, I know personally that I enjoyed not a less-than-average life nor an average life, but as I've told many, my life has been not ordinary but extra-ordinary.

"I am convinced without a doubt that a loving Heavenly Father oversees the creative miracles in the inner sanctum of each mother's womb (Psalm 139), and that in His sovereignty there are no accidents.

"'What the caterpillar calls the end of the world, the Creator calls a butterfly.' As humanity we see only the imperfect, underside of God's tapestry of our lives. What we judge to be 'tragic--the most dreaded thing that could happen,' I expect we'll one day see as the awesome reason for the beauty and uniqueness of our life and our family. I think that's why James 1:2 is a favorite verse of mine. Phillips' translation put it this way: 'When all kinds of trials and temptations crowd into your lives, my brothers, don't resent them as intruders but welcome them as friends.'

"I love Joni Eareckson Tada's quote. When I saw it on the front of Moody Monthly, October 1982, I was convinced she'd penned the words for my epitaph. Now my husband David is aghast to hear me say I want it on my tombstone! Glory be!

People with disabilities are God's best visual aids to demonstrate who He really is. His power shows up best in weakness. And who by the world's standards is weaker than the mentally or physically disabled? As the world watches, these people persevere. They live, love, trust and obey Him. Eventually the world is forced to say, "How great their God must be to inspire this kind of loyalty."

"Being Christian didn't shield my family from the pain and tears that came with my birth defect. In fact, ten years ago when David and I interviewed our parents for a Keepsake Tape, I was stunned to hear my mother's true feelings. I asked her to tell the hardest thing in her life. Her response: 'the day Judy Ann was born and it still is....' And yet when we as a family look back over the years, our reflections are invariably silenced by the wonder of God's handiwork. Someday I hope to put it in a book and I know it will be to the glory of God.

"Getting married and becoming a mother were dreams I never dared to dream, but God, the doer of all miracles intended that my life be blessed with an incredible husband and three daughters. Emily is nine, Betsy will soon be seven, and Naphtalie Joy is four. I've decided that every handicapped person needs at least one child. They are fantastic helpers and so willing to let me 'borrow their legs' when I need help.

"You as a family have been chosen in a special way to display His unique Masterwork. I pray that your roots of faith will grow deep down into the faithfulness of God's Loving Plan, that you will exchange your inadequacy for the Adequacy of Jesus' resurrection power, and that you will be awed as you witness the fruits of the Spirit manifested in your family."

Wednesday, September 21, 2005

Sooooo Frustrating!!!

We've been waiting to see the ENT doctor so he could determine whether or not Rachel really needed tubes in her ears. A procedure that would be done while she was under general anesthesia when she's getting her palate repaired. I've called Loma Linda several times to see about us getting worked in to be seen sooner than our yearly appointment with the craniofacial team, which was scheduled for next Monday, the 26th. I didn't bother calling this week, I figured at this point, they won't get us in to see the ENT any sooner then us seeing him with the team on Monday.

The craniofacial team coordinator called and left a message this morning stating that our appointment for Monday has been rescheduled.... rescheduled for FEBRUARY!!!!! Of Next Year!!!!! 5 months from now!!!! Grrrrrrrrrr!!!!!

I wasted no time in jumping on the phone to the team coordinator, inquiring as to why we were rescheduled, and why so far out. Of course I had to leave a message. And then I called Dr Martin's nurse and gave her my sob story. She was very compassionate and understanding and was totally willing to listen to me and get this taken care of. She will talk to Dr. Martin either tomorrow or Friday, when he is in clinic, to get him to call the ENT to get us worked in.

This is just so frustrating. It seems like there is always a bump in this journey somewhere. We would appreciate prayers for the doors to be open for Rachel seeing Dr Rowe, the ENT, as soon as possible. Until we see him, her palate surgery date cannot be scheduled.

Tuesday, September 13, 2005

Walking, Walking, Walking

Learning to walk wearing shoes...

Since the weekend, she just kinda takes off walking if she's in a standing position. It seems so strange to see her walk. LOL.

Rachel saw the orthropedist this morning in follow up of those hip xrays, and he gave the all clear as far as her hip sockets. She's just pudgy and the lines they look for when examing the hips were off because of all her chub. LOL.

Friday, September 09, 2005

Operation Smile Mission

Operation Smile is an organization of volunteers who travel throughout the world repairing facial deformities, mainly cleft lips. This team of volunteers made up of plastic surgeons, nurses, anesthesiologists, and miscellaneous other medical people donate their time and services to restoring ones smile.

I came across this blog this evening, Operation Smile's September Mission to China. It's a blog currently being written by one of the volunteers who is on the current mission to China.

I am always searching online for other cleft related blogs, so I was excited to find this one. I thought since so many follow Rachel's Journey, that perhaps one might be interested in following the journey of a team of people who are "changing the face of the world ... one smile at a time".

Wednesday, September 07, 2005

Keeping Cool with some Friends

We went to a friends house after school today. Rachel and her friend Caleb, who is almost 9 months old, enjoyed the pool just like the rest of us!

12 Month Well Baby Check

Rachel saw Dr Berry this morning for her 12 month check up. She weighs 23lbs 6oz, dropping to the 75th percentile for her weight. And is 28 1/2 inches long, still in the 25th percentile. In other words....she's still short and chubby. :)

Dr Berry sent Rachel for hip xrays. Upon examination, he wasn't sure if one of her hip sockets wasn't developing correctly. After having the xrays done, and being read by the radiologist, I hand carried them back to Dr Berry. Not being able to wait to hear the report from the doctor, I looked at the report and discovered the xrays were normal. Thank the Lord! Dr Berry wants the orthopedist to look over her xrays and give the final okay. So I'll call tomorrow for that final report.

Other than that, Rachel checks out just fine and is on schedule for development!

The other thing is when the nurse had Rachel laying down measuring her, and Rachel was crying, I was able to see that she's finally had her two bottom teeth finally break through the gums! Pretty soon, her little smile is going to look so different!!

Friday, September 02, 2005

Another Trip to our Happy Place

The girls and I made another trip to our 'Happy Place' tonight. We met up with our friend Caroyln and her two kids.

This picture is of Rachel on the Casey Jr Train Ride. We were in the Monkey appropriate. LOL. Rachel loved it!
After a couple of hours of Princess Hunting and avoiding long lines at Disneyland, we headed over to California Adventure, where we had decided we wanted to stake out a place for The Electrical Parade. Rachel had never seen it. And boy was she ever facinated by it. The parade kept her attention the entire time...she stood and clapped, she sat and bounced, she loved it.
While this picture doesn't really capture her enjoying the parade, she was intensely concentrating on what was coming next. LOL.

Thursday, September 01, 2005

Rachel Meets the Fire Department!

Rachel had her first encounter with the Fire Department this morning!

After dropping Hannah off at school, Rachel and I went to the grocery store for groceries.

The box boy helped me out to my car and started loading the bags into the van. I went to lift Rachel out of the grocery cart and she started screaming, her leg was stuck between two narrow metal bars of the cart seat. We tried to manipulate her leg to get it to come out. But it didn't work. Another customer who had a tool box on the back of his truck attempted to open the bars up with pliers. That didn't work either. Meanwhile, in attempts to keep Rachel calm, the store manager brought out a box of Popsicles, that worked. LOL. The manager had to call the fire department, and they had to cut the shopping cart in 4 different areas in order to get Rachel's leg out. LOL. Thankfully, while it was stuck, her circulation wasn't being affected, we just couldn't get it out. Everyone was so helpful, the store manager even sent the box of popsicles home with us for Rachel.

So there's her very first adventure of her new year! LOL.

Sharing Something Special

The dress in which I had Rachel's pictures taken was a special dress. It was the same dress I used for Hannah's 12 month pictures and it was the very dress that I had my 7 month pictures taken in. Up until last night I always thought it was my 12 month pictures, but my mom informed me otherwise. :) This dress is over 30 years old and was worn by me, and my two daughters! Something special indeed!