Craniofacial Appointment

First of all, Thank You for all your thoughts and prayers for Rachel's appointment today. Your prayers are very much appreciated!

Rachel's appointment with the Craniofacial Team went really well. We arrived at our scheduled time of 1:00 and were in a room by 1:30. The first doctor we saw was the Team Pediatrician. He had just one medical student with him and she asked a lot of questions about Rachel's history, her sleeping and eating patterns, etc. The Pediatrician looked Rachel over, lungs and heart were good, ears are good. Although he says it looks like the one remaining tube in Rachel's right ear is out. We went over her hearing test from a couple of weeks ago, and he was pleased with the results. We talked about the recent ear infections and he said with it being cold season, it's expected, but once we're out of the cold and flu season, and if she continues to get ear infections, then we may need to consider tubes again. But for now, we'll just watch her and have her hearing retested in 6 months to be sure she's still hearing good. The next person we saw was the Speech Therapist. Unfortunately, since our last Craniofacial Team appointment, the Speech Therapist we'd been working with has left, so this was a new person for Rachel today. She had Rachel look through a book with her and she asked her what things were, what they were doing, etc. It was a fun way of getting her to talk and her watch how she pronounces things, positions her mouth, etc. The outcome is that there are some areas of concern. For one, she has an underbite that is affecting the position of her tongue when it comes to pronouncing words. And then there are some other sounds that just need work. While a concern, it's not a big enough concern to warrant speech therapy through her. She suggested we seek it out from the public school system where speech is available free, in addition to working with her at home. We will soon be starting the process of applying to get her into the school where Hannah goes, and once we're accepted there, we'll seek speech therapy at that school. And of course, we'll start really working on her at home.Rachel was doing so well in cooperating with the doctors and coloring in between, she was even happier when she found a half eaten bag of M&Ms in the backpack. And wouldn't you know, it was the dentist who came in next. He tried looking into her mouth, and got a good look at her cleft aveolar ridge and misplaced teeth, but he did question if the spots he was seeing were fillings or just M&Ms. LOL. The bone graft to the aveolar ridge won't be done until she's around 7 or 8 years old, so she has a while. Rachel has an official dental appointment on Wednesday for a cleaning and thorough exam. He was happy to hear that.

Next up was the Plastic Surgeon. It wasn't the plastic surgeon who's actually done surgery on Rachel, but she was very personable considering she's a surgeon and took the time to answer our questions. We've been told in previous Craniofacial appointments that now is a time that they consider doing a nose revision to touch things up that might need fixing. Ultimately, it's up to us. There are things that can be done, but after talking with the plastic surgeon, they wouldn't necessarily be fixing the things we see wrong with Rachel's nose. We can wait and combine a nose revision when she has the bone graft in a few years, or we can do it now. Our biggest concern is that kids might make fun of her nose. It's squished, a little uneven, and some days looks flatter than other days. We were talking over dinner, that if hold off for now, the beauty of going to a school that is year round is if need be, we could schedule surgery for when she's off track. It's something we need to really think about and pray about. But it was nice to have our questions answered.

Unfortunately, the ENT was not at Craniofacial today. He was one of the doctors I had specific questions for. But thankfully, the Pediatrician told us up front ENT wasn't there and we were able to ask him our questions.

We saw only four doctors and were out of there in about 2 1/2 hours. Because we're return patients, it gets easier and easier each year I think and it's not an all day event like the very first time we saw the team. But that doesn't mean we don't come prepared with a backpack of things to do and snacks! Daddy's iPhone came in very handy too for all three of us! So in review, the appointment went great. Have some areas in speech to work on, a hearing test in 6 months, and a decision to make/pray on in regards to a nose revision at this time! Next team appointment....January 2010!

Prayer Request for Appointment

As everyone is aware, Rachel was born with a cleft lip and palate and has already had three surgeries in her short little life and will have many more in the years to come. Perhaps even one this year.

Tomorrow, Monday, we meet with the Craniofacial Team at Loma Linda University Medical Center.

Rachel is at the age now where she could have a nose revision (aka - nose job) to straighten out her nose and poof it up a bit. We'd very much like this done before she starts Kindergarten in August.

I know many people have prayed on behalf of Rachel over the last four years, therefore I wanted to share some prayer requests for tomorrows appointment:

1) The appointment to go smoothly. We see about 5 different doctors, each with their own entourage of medical students and residents. Sometimes the appointments last for hours.

2) That the doctors we have questions for are there, particulary the ENT and Plastic Surgeon we are used to dealing with.

3) That Rachel would cooperate with the exams and all the poking and prodding. That she wouldn't be scared.

4) That no new concerns arise.

We didn't see the Craniofacial team last year, so it's been two years. I know how it works, and I know there's nothing to be concerned about, but I'll be honest and say I'm a little anxious for the appointment. Probably because it has been two years, and we're anticipating a surgery this year, etc.

Thank you in advance for the prayers said on her behalf. I'll have an update and pictures posted here before Monday is over.

Prayers for Rachel

Rachel has a dental appointment this morning and she's developed a cough. Would you please be praying her cough subsides so that the dentist and hygienist can clean and examine and do what they have to do. Thank you so much!


Edited to Add: I couldn't get Rachel's coughing controlled, so I had to reschedule her appointment until next week. Thanks for your prayers!

Disneyland with Gramma

Gramma's Disneyland annual pass is expiring in a week and she's not going to renew it at this time. So with there being no school today, we took advantage of that and went! The girls had gotten Disney gift cards and Disney Dollars for Christmas and they've been itching to go shopping. So that was our main goal for today, and what a great goal it was! The girls also got Pressed Penny books along with quarters and pennies for getting Disney Pressed Pennies. So that was a goal for today as well. That could very easily become an addicting hobby. Rachel chose to get a pressed Tinkerbell quarter and was very happy to put it in her little book.Rachel will hardly sit in the stroller much these days. I take the stroller on days when we pack our lunch, anticipate staying into the evening, or like today, plan on shopping! She's really good at walking near the stroller, unless of course Hannah is by her side, then they generally will walk ahead. Rachel had a list of things she wanted to spend her money on, but in the end she ended up with a stuffed Tinkerbell Doll (because two Tinkerbells at home weren't already enough) and a new Tinkerbell cup. She was very happy with her purchase!

Rachel's Journey Through Pictures

About a year and a half ago, I put together a slide show of pictures that showed Rachel's Journey. It can always, be found over on the left sidebar under the "Rachel's Journey Through Pictures" link.

I added a few recent pictures to the end of the slideshow and thought I'd share that slideshow again.To this day, to watch the slideshow of the pictures unfold, showing God's Glory and hand on Rachel brings tears to my eyes. He has brought us so far in this journey, and yet we still have a ways to go. But with Him by our side, we'll only see more of His Glorious hand at work.

The Gift of a Smile

A couple of weeks before Christmas, we were informed that not one, but two smiles, had been donated to Operation Smile on behalf of Rachel!! Because of this donation, two children will have thier cleft lips repaired and a chance at having a normal life.

To the people who donated the smiles, if you're reading this, Thank You! It meant a lot to us to have you donate smiles on behalf of our Rachel. That was a special thing to do and we appreciate it.

To the rest of you, if you would like to give the gift of a smile, visit www.operationsmile.org for more information on how you can help.

Hearing Test

I don't think we could have asked for any better results of Rachel's hearing test! Thank you all for your thoughts and prayers!

First of all, this was the BEST audiologist we've ever had. I'm writing his name down in my "Rachel's Medical Book" for any future testing. He worked well with Rachel and obviously loves children. Which really helps if you want them to cooperate.

He did a pressure test on both Rachel's ears. And believe it or not, the ear with the tube out was better than the ear with the tube. He thinks that perhaps the tube is either on it's way out of the ear drum, or is out, but we can't tell for sure because of all the wax that is surrounding it. So that was the first great news!Then it came time for the actual hearing part of the test, whereas we go into a sound proof room (can you say claustrophia?), and they do play audiometry on her. She wore ear phones and had to follow his directions that he was giving from the other side of the double paned glass. She also had to drop a block into a bucket every time she heard the birdie chirp, which they do at different decibels to test her hearing. She was within normal limits on both ears for those tests!!

This is the best results after a hearing test she's ever had! We see the craniofacial team on the 26th, and that includes her ENT, so we'll see what he has to say then. The only concern then might be that she's had two ear infections in the last month.

Prayers for Rachel

Rachel has a hearing test this afternoon, at 4:00, our time.

I would appreciate your prayers for her to 1) cooperate as it's been about 18 months since she's had a hearing test and 2) that the results would be good.

She's had two ear infections in the last month. She has one tube in, and one tube out. Which overall, the tube that is still in, is good, it's been in since October 2007. She doesn't appear to have any hearing problems, at least not to us. But the test will tell us.

I'll update this evening with the results.

Lesson Learned

Rachel went on Grandpa Steve's work route this afternoon. Grandpa Steve learned a very valuable lesson today.

He learned not to leave his car keys in the ignition when Rachel is in the car. You never know when she'll lock the automatic doors before getting out, leaving you locked out of your car! The door was ajar just enough to get a yard stick in and put pressure on the automatic lock, only after a wire hanger wasn't strong enough.

Ear Re-Check

The first week of December, Rachel was diagnosed with an ear infection. Our pediatrician likes to re check the ears about 2-3 weeks after being on antibiotics. With Christmas and New Years and the short work weeks, I had put off making the follow up appointment. But over the weekend, Rachel complained once or twice about her ear, so I was able to make an appointment and get her in this afternoon.

Just as I suspected, her ear is infected (again? still?). So back on antibiotics for four days and another re check in 2-3 weeks.

Looking Ahead

2008 was an uneventful year for the most part when it came to Rachel. She started her second year of preschool and has met other developmental milestones, but for the most part it was a quiet year - no surgeries, no craniofacial team appointments, no specialist appointments. Just the regular stuff with our Pediatrician.

But looking ahead to what 2009 holds, there is the potential for a 'busy' year for Rachel.

The first big thing is to have a hearing test. I need to get that scheduled today and hopefully get it done before her first big appointment of the year on the 26th. She sees the craniofacial team for the first time in 2 years on January 26th. We weren't anticipating 2008 to hold much, and because of the way the appointment is billed, we are 100% responsible for the $700+ bill it ends up being, so we got permission from the team to just skip last years appointment. She needs to be seen this year. And more than likely, Rachel will need a nose revision, aka 'nose job' this year. And depending on how her hearing test goes, I imagine there is the potential for tubes in her ears again.

Looking a little further ahead, I think the biggest thing that 2009 holds for Rachel will come in August when she will more than likely start Kindergarten! And because of that, if she is to have a nose revision, I'd like for that to be scheduled and done and healed before she starts a new school with new children, etc.

There are lots of other 'little' things the year will hold as well - our baby will turn 5 years old in August, she'll move up in classes at Sunday School, and lots of other miscellaneous things we don't foresee. But looking ahead, it's definite that 2009 will hold more for Rachel than 2008 did!

Christmas 2008

Christmas Eve day the girls were literally bouncing off the walls with excitement for what the rest of the day held, let alone the fact that the next day was Christmas. We made it through the afternoon and went to the 5:30 church service. The service had no children's ministry, therefore the girls had to sit in the service. Rachel was very wigglely, but at least she was quiet.

Following church we went to my Grandmother's house for the annual Christmas Eve gathering. We didn't make it for dinner this year, but we arrived just as the dishes were being done and the way was being made clear for the gift exchange. There weren't only two very excited little girlies, there were now four, all running about and hardly containing themselves. I think from the time in which the first gift was passed out until the last one was given out, was maybe 30 minutes. Rachel was excited when she opened up her presents and they were things from her list she had made a couple weeks ago.We didn't stay as late at my Grandmother's as years past. We needed to get home and get stockings stuffed, as well as do a little bit of assembling on Rachel's dinosaur.

Christmas morning, Rachel had to be woken up. We held Hannah back as long as we could, but just shortly after 7:00, we let Hannah wake her up. We started off in the family room, where upon entering into the family room, and spotting her dinosaur, she had a huge smile on her face. She climbed atop and said "This is just what I wanted!" She loved it and played with it and gave it a lot more attention the remainder of the day than we thought she would.After meeting Kota, we did stockings in the living room and Rachel was very excited to get Tinkerbell on DVD. She had a lot of other goodies too, but that was her most favorite.Not long after our time together as a family, doing stockings, opening presents and cards from out of state family, the festivities got under way when Gramma and Papa, Uncle Bart, Uncle Robbie, Auntie, McKenzie, and Haylee all showed up! There were many more presents and once again, our kids were well spoiled. It was Tinkerbell Christmas for Rachel. She got the Rosetta (one of Tink's fairy friends) dress up costume she wanted from Disneyland, the movie, a fashion and style head, a little toy, and this adorable Tinkerbell pillow that she absolutely loves. The rest of our Christmas Day was spent hanging out, all the girls having disappeared into the bedrooms to play. We had a nice dinner. And in the early hours of the evening we had more family stop by and even some friends join us for the evening. It was a great, great Christmas.

Merry Christmas!

Merry Christmas to all the followers of Rachel's Journey.

A Rachel Funny

Last Thursday evening, Steven and the girls went out Christmas shopping for me. They've both been pretty good at keeping their lips tight and not telling me where they went or what they bought. But this evening at dinner Rachel said something about what they bought for me...

Rachel: "We bought you a costume for Christmas"

Me: "Yeah? Which one"

Rachel: "The witch one. The mean witch one from Wizard of Oz".


Yea, it's been one of those days around our house. First day of Christmas break. Out of routine. The girls are excited for Christmas that is just days away. Won't leave each other alone. PMSing on my part.

I'm sure I could have worn that costume and fit the part well today...

Snow Day!

The winter storms that hit Southern California this past week, not only brought us lots of rain, and cold temps, it brought lots and lots of snow the local mountains. But more importantly, Gramie got about six inches of snow just at her house in the high desert! Cajon Pass
After bundling and gloving everyone up, we went out to play! Rachel had so much fun in the snow and didn't even bat an eye about laying in it and crawling around in it. And thanks to a snow suit that our friends gave her last Spring for snow days at preschool, she actually kept dry, with the exception of her jeans peaking out from the snowsuit overalls! We played out in the snow for a good hour, maybe longer. And then Rachel started complaining about her hands being cold. So we went inside to change into dry clothes and sit by Gramie's fire. Rachel had so much fun and I'm sure we're going to hear her be asking when we can go back and play in the snow again!