Last week was 3 months since Rachel's surgery. She came home for the weekend in order to go to her 3 month post op appointment this morning with Dr. Martin.
Monday, September 25, 2023
3 Month Post Op Appointment
Monday, August 21, 2023
2 Month Post Op Appointment
We saw Dr. Martin today for Rachel's 2 month post op appointment!
It was a pretty uneventful appointment. Dr. Martin looked took a look inside and said everything looks great! Diet can now include very small bites of steak and working up to bigger bites over the next several weeks.
We return in 4 weeks for another appointment.
Thursday, July 20, 2023
1 Month Post Op
It's hard to believe that it was one month ago today that Rachel had her surgery! It was a busy morning of appointments.
First up was with Dr. Martin. It was a quick visit and the most important thing to come out of that visit was that Rachel's diet has been upgraded! She can now chew small bites of chicken, ground beef, PBJ sandwiches, etc., in addition to all the soft stuff she's been doing. She was ecstatic to say the least!
Dr. Martin said everything inside looks great, swelling on the inside is all gone, stitches still intact, bite and the alignment of teeth looks great. We actually don't go back to see him for 4 weeks! Thankfully this is all working out as she moves back to Phoenix for the new school year a week later.
Monday, July 10, 2023
3 Week Post Op Appointment
Monday, July 03, 2023
2 Week Post Op Appointment
Tomorrow will be two weeks since Rachel's surgery.
Recovery is moving forward without any complaints, other than the fact that Rachel is tired of eating the same few things and the fact that she's just done with the splint in her mouth. She's only taking Advil or Tylenol about once a day at this point, no more round the clock pain coverage. The last two nights, she has slept the entire night through in the recliner! She's doing really, really well.
Monday, June 26, 2023
Post Op - Day 6 and a Post Op Appointment
Rachel is now 6 Days Post Op.
Last night was her best night yet. She slept through the night. Still sleeping in the recliner, in an upright position to keep the swelling down. She's not been sleeping well the last several nights, and I was willing to try anything, and then it came to me to try some lavender oil and that worked!!! It's amazing how much better you feel when you get a good night's sleep.
Saturday, June 17, 2023
Surgery is a Go!
Rachel is scheduled to have her jaw surgery on June 20, 2023.
We have had this date for 6 months.
Ten days ago, the surgery scheduler called to tell me that our insurance company had denied approval as it was deemed "not medically necessary". Additional records, measurements, scans, pictures, etc, were submitted. Appeals filed. Another prior authorization submitted.
We moved forward in trusting the Lord and having faith that all this would work out and we would receive insurance approval.
Rachel had a pre-op appointment with Dr. Garcia on Wednesday. And she had a pre-op appointment with Dr. Martin this morning, as well as a Pre Admitting Appointment where they went over all of her medical history and took blood.
Long story short, we received word this afternoon that our insurance has re-reviewed Rachel's records and this surgery is indeed medically necessary, and they have given the approval for surgery!!
Surgery is a go! And it's happening this Tuesday!! Thank You Lord!
Thursday, December 29, 2022
Surgery is Scheduled!
Rachel had an appointment with Dr. Martin today. It was pretty much an appointment to keep us from falling through the cracks and on target for a summer surgery.
Well, Rachel's on target and surgery has been scheduled!
Rachel will be having her next surgery on June 21, 2023!!
This surgery will be her 5th surgery related to her birth defect. It will also be her biggest surgery, as Dr. Martin will move and realign her upper jaw and line up her lower jaw.
Friday, July 01, 2022
Appointment with Dr. Martin
Rachel's been in her second set of braces for almost 2 years (coming up this month!) in anticipation of getting things moved and in position for her next big surgery, which we knew would be around the time she was 17-18 or there about depending on her facial growth.
Today, we saw Dr. Martin, Rachel's plastic surgeon. We saw him last in November 2019, where he sent us back to Dr. Garcia, her orthodontist for baseline X-rays and a return appointment for 6 months later. We had an appointment scheduled to see Dr. Martin in May 2020, but it was cancelled due to the COVID outbreak and was never rescheduled.
Here it is, a little over 2 years after we were supposed to return. It was a good appointment. Good to touch base and have her looked at.
Rachel is where she should be (growth wise) for moving forward with surgery. Dr. Martin thinks just by looking at her, and her bite, that he might be able to get away with just repositioning her upper jaw, and not the top AND bottom as some cleft kids have. Of course he won't know for sure until he gets CT Scans and puts it all into the computer for graphing and calculating. But overall this was great news!!
The problem - Rachel leaves for college in 8 weeks. There is no way Dr. Martin can get her on the surgery schedule and done and recovered in 8 weeks. So our hope/plan is to have surgery next May/June when Rachel is home for summer after her first year away at college. We just need to check with Dr. Garcia to make sure it's okay she sits in braces for another 11 months until then.
Profile pictures were taken today for her medical records. We have a video appointment in a couple of weeks with Dr. Martin after he checks in with Dr. Garcia.
Saturday, September 29, 2012
Chairi I Malformation Diagnosis
After some simple neurological motor skills were performed, the Pediatrician ordered a head CT Scan, to rule out any sub-cranial bleeding, or other injury as a result of where she hit her head (the back).
While the head CT scan came back negative in regards to any further injury as a result of her fall, it did come back that a brain anomaly (abnormality) was found, specifically a Chiari Malformation could not be ruled out. We followed up with our Pediatrician the very next day and he sent us for a neurologist consult.
We saw the neurologist a few weeks later and he ordered a full set of spinal x-rays, a brain MRI, and a c-spine MRI, all to rule out any brain malformations, any spine malformations, and Spinia Bifida.
The Xrays we did immediately following Rachel's appointment. The MRI's we had to first wait for the authorizations from our insurance and then get the appointments scheduled. She had the MRIs on September 7th.
I knew what to tell Rachel in regards of what to expect for these major tests as my Mom has had the very same tests done in the last six months, both in which I accompanied her into the room for. I was so proud of Rachel, she laid perfectly still for both tests, which was about 45 minutes.
Last week, I spoke with Rachel's neurologist on the phone in regards to her results. While the MRI's were negative for Spinia Bifida, and any other issues, the MRI's did confirm Rachel has a brain malformation called Chiari Malformation.
Because this was found on 'accident', via the head CT Scan, her specific diagnosis is Chiari I Malformation. She's been asymptotic all these years and the diagnosis wouldn't have been made other than by accident, such as the CT Scan as a result of her falling on her head.
When we first learned of the possibility of the diagnosis, I contacted Rachel's speech therapist. She's very knowledgeable in a vast area of medical things, specifically anything related to clefts. She assured us that this condition is fairly common among kids who have been born with clefts. And while we were confident that if a diagnosis was confirmed, she's been perfectly normal the last 8 years, and we knew if she did have it, it wouldn't be something to worry over. But it was comforting to know it's a diagnosis sometimes seen with those born with a cleft of some sort.
This website, Chiari I Malformation, gives a very simple, yet very helpful explanation of it.
Our Speech Therapist said the information is good to have. It's nothing that needs to be kept out on the dresser of our brains so to speak, but definitely kept in a drawer. It's important information to give to any surgeon and anesthesiologist who touches Rachel in the future. It's important information they need to know in order to position her head when intubated for any future surgeries.
We have a return appointment with the Neurologist on November 1st, just to follow up.
Monday, June 06, 2011
Appointment with Dr Martin
It's hard to believe that next week will be 7 months since Rachel's bone graft and nose revision!
We had a follow up appointment with her plastic surgeon this afternoon. We had a letter from our Speech Therapist outlining some concerns she had in regards to Rachel's hyper-nasality in her speech from time to time and her concern for a possible fistula (hole) in the palate.
Dr. Martin checked out Rachel's nose and inside her mouth and while he didn't see anything, he went ahead and ordered a Fistulagram.
The procedure is a special XRAY whereas Rachel will need to swish contrast about in her mouth and then they'll Xray her facial bones to see if the contrast finds any holes in her palate and the contrast travels. This procedure is pretty accurate and this will give us an answer as to whether or not Rachel has a hole in her palate, or if she's just lazy in her speech. I'm pretty sure it's the latter. But it'll be nice to have a test to rule out the other.
Monday, November 15, 2010
Pre-Op Appointments
The first one was 8:00 with Dr. Martin's resident. She went over the procedure, over all the risks and benefits, had me sign the consents, and answered my long list of questions. She also took a listen to Rachel's lungs and heart along with the other basic vitals and snapped a before picture of Rachel for her chart.
We saw Dr. Martin in the hall and he said he'd see us Wednesday. I made it a point to tell Rachel that he was Dr. Martin and he'd be the one fixing her nose and inside her mouth.
Next appointment was the "Pre-Anestheisia Consultation and Education" appointment where we basically did all the pre-admission stuff. My Mom went with us to these appointments this morning and I'm so thankful she did, she kept Rachel busy while I filled out numerous amounts of paperwork, and was the second set of ears to hear anything and everything everybody had to say. Thanks Mom!! :)
Monday, August 02, 2010
Appointment with the Plastic Surgeon
For years, we've been saying Rachel's next major surgery will be when she's between the ages of six and eight years old for a bone graft to repair the cleft in her alveolar ridge. And well, we're at that point of officially discussing the next surgical phase of this journey. Rachel will be six years old at the end of the month.
After talking about the affects of her cleft gum on her speech with Dr. D'Antonio, and another concern we have in regards to her nose, we made an appointment and this afternoon, was our appointment.
Because we keep in contact with Joy, Aiden's Mommy, who also has the same doctors as Rachel, we anticipated a very long wait in the waiting room. Joy has waited for appointments for up to three hours just in the waiting room, not even being placed into an exam room, well after the business day hours have come to a close. Therefore we came well equipped - the laptop, our iPad, snacks, and Rachel's homework! It worked out perfectly and helped pass the time now that WiFi is offered within the clinics. I was entertained on the laptop, while Steven and Rachel watched a movie on the iPad. The almost 2 hours of waiting in the waiting room, waiting to be placed in an exam room were almost bearable thanks to the diversion of modern day technology!
There were four things we had on our list to discuss with Dr. Martin.
1) For months we've noticed this odor. For the longest time, we thought it was Rachel's hands and the constant putting of them in her mouth, dried saliva, etc. But the smell was noticeable even after her baths and being clean, etc. Steven came to the conclusion in the recent mont or two that the smell was coming from her nose. She has an extra flap of skin in one of her nostrils, so who knows what could be going on in there.
Dr Martin thought it could be a number of things.
Cleft children sometimes will have extra teeth up in their gums, going undetected, hard to brush, etc, therefore will decay, rot, and smell.
But after looking at Rachel's nose and seeing the flap of skin in her one nostril, he thought it was highly possible for stuff to just collect there and that's what could be smelling.
2) The bone graft to the aveolar ridge. We've always been told this happens when her permanent teeth start to appear, etc. We've also been told recently that Dr. Martin is doing this type of surgery earlier. And after talking to him, he thinks Rachel is a great candidate for having a bone graft surgery to her alveolar ridge now.
3) The relationship between her upper jaw and her lower jaw is affecting her speech in some areas of pronunciation and articulation and we were wondering if at what point that might be fixed. Because the face doesn't fully stop growing in girls until they are 16-17 years of age, there will be no work done on moving her jaw until then. Dr. Martin thinks her disproportion is minimal and we can wait until she's in her late teens to fix that. We will need to just follow up year year and monitor her growth, etc.
4) Nasal touch up, aka, nose job. Some people don't notice Rachel's lopsided, flat on one side nose. It's not all that noticeable to those she is frequent contact with. It's part of her. It's part of what makes her so cute, in my loving mother's opinion. But the harsh reality is, her nose is lopsided and flat and needs a lift.
When we brought this to the attention of the plastic surgeon at our annual craniofacial team appointment in January, the plastic surgeon we saw had a differing opinion on doing a nose job now. She thought it best to wait.
Dr. Martin's idea is different. His view is that Rachel is at an age where socially, she could start to be made fun of, etc. And thus, he agreed, that a nose lift is in order.
It means that we most definitely are at the next phase of Rachel's journey.
Dr. Martin will do a nose job (lift it and make it perky), and he will repair the cleft in her alveolar ridge. He will fix that cleft in her gum by taking a piece of the soft tissue in her hip bone and implanting it into her alveolar ridge. After agreeing that this is the step we want to take, we were directed to the surgery schedulers office and we scheduled surgery!
Rachel will be admitted and have her surgery on Wednesday, November 17th. She will need to stay one night in the hospital, assuming there are no complications, etc.
We scheduled it on this date, as the girls will be on Thanksgiving break and will be out of school for two weeks. Dr Martin says Rachel will be just fine to return to school the week following Thanksgiving assuming she's feeling good, etc.
It feels good to know what's next. Feels good to know we'll be getting it done sooner than later. And yet, it feels like "here we go".
What about all the unknowns-like how will she react to being in the hospital? How will she do recovery wise? Pain tolerance wise? What will her nose look like??
Rachel was just 15 months old the last time she had major surgery. She was just a baby. She's a little person now. How will she take all this?
Two things are for sure: I know we don't have to worry. I have faith in our Lord that He'll carry Rachel, and us, through all of it. We have our loving family and friends and church family who will be praying for her and her doctors, and secondly, that little girl will probably get lots of lovin' from all the above during those couple of weeks of recovery!
Wednesday, January 28, 2009
Appointment with the Dentist
I'm ashamed to say, it's been two years since I've had my kids to the dentist. But we're there now, and our insurance covers the new office and the girls both had pleasant experiences today, so we'll be better about going every 6 months now.
I had told Rachel ahead of time what they'd be doing, etc. She was happy to get there and see that they had TV's in the ceilings and that Kung Fu Panda had just started. She was even more excited when the hygienist gave her sunglasses to wear while she shone her bright light into her mouth.
We knew Rachel would have orthodontic issues in the years to come. But it really hit me today when I saw that xray of her upper gum line and all her teeth jacked up and every which way. You sometimes 'forget' your baby was born with a birth defect because the obvious visual signs are gone - the lip has been repaired, the gapping, black hole has been repaired. No one can see how jacked up Rachel's teeth are, unless she smiles really big and you can see that something is a little off.
It was my goal today to get a picture of her teeth, to share here on her blog. You see the commercials for Operation Smile, or The Smile Train. You see the advertisements in magazines. Pictures of three or four year old children with unrepaired cleft lips. You can see how messed up their teeth are if they have a cleft in their aveolar ridge, their gum line. THAT is exactly how Rachel's teeth look behind her beautifully repaired lip. I explained to the hygienist that I keep an informational blog about Rachel's cleft and would she mind shinning her bright light so I could get a picture. She did better than that, she put this device in her mouth that props the mouth completely open for surgeries, etc. But those pictures turned out blurry.
Apparently Rachel has very porous teeth, something unusual for kids. Her teeth also have deep grooves, and as a result she has four teeny tiny little cavities in her big teeth in the back. Those will need to be filled. We go back in April to have those fixed. They take extra caution with kids and try to make the experience as positive as possible. So in addition to numbing the area, they will give Rachel some laughing gas for the two appointments. We need to keep Rachel's thoughts towards the dentist on the positive because she'll be dealing with dental issues for years and years to come. So whatever works!
Also looking on Xray, the dentist did say it looked like she was perhaps missing an adult tooth. Which is VERY common in children with cleft aveolar ridges. Something orthodontics will take care later down the road.
Overall, the dentist said she looked good. If you call four teeny tiny cavities and the fact their Mother hasn't had them to the dentist in two years, good. Rachel enjoyed the experience. She didn't quite get the needing to wait to eat or drink for a while afterwards (give the vitamins time to dry or soak in??). Rachel listened to the dentist and allowed me to help her tonight after she'd brushed her teeth. LOL.
Monday, January 28, 2008
Cranio Team and Rachel's Speech
I also found out through talking to the nurses that Rachel's speech therapist is no longer working for Loma Linda, which was kinda sad, but if Rachel needs speech in the future, she is now eligible to receive FREE services through the public school system.
Rachel's speech in the last several months and even more so in the last couple of weeks, has blossomed so much. It really is amazing how well she carries on a conversation. Most times she talks nonstop. Recently, I was paid a compliment by my cousin in regards to how well Rachel talked. She was astonished that Rachel was only three and spoke so well and in so much detail. My Aunt who also carried on a conversation with Rachel said the same. It's always so nice to hear people compliment Rachel's speech, especially those who are not around her often.
Tuesday, September 04, 2007
Follow Up with The ENT
We already have a surgery date, Friday, October 5th. It's a simple procedure that takes about 5 minutes, therefore the surgery will be done on an outpatient basis, and as soon as she wakes from the anesthetic, she'll be able to go home and by the afternoon, it'll be a normal day, as though nothing ever took place that morning.
Monday, August 27, 2007
Appointment with the Audiologist
After the tympanogram, the audiologist did a few more tests, some were geared towards kids a little older, but she did good on a couple, and was distracted on another.
Thanks for the prayers for todays appointment!
Sunday, August 26, 2007
Ear Infection...Again
Tomorrow, she has her repeat hearing test. Which I'm not sure how helpful the test will be seeing how she has a mild ear infection. Next week we see her ENT to discuss tomorrow's results and whether or not to put tubes in her ears again. At this point, having now had two ear infections since we saw him at the end of June, I'm sure he'll be recommending tubes.
However, prayers would be appreciated that she'll cooperate for her hearing test tomorrow and that the audiologist works well with small children. :)
Monday, August 13, 2007
Evaluation with the Speech Therapist
With the speech she was able to observe, Adrianna was very pleased with Rachel's progress and said her speech development was typical of a normal 3 year old and that Rachel's speech will only get better once she starts preschool next month. Rachel's speech is not nasally (something common in cleft palate babies) and the glottal sounds we were once concerned about, she no longer makes.
So for the time being, no need to reinstate speech therapy, or even look into the speech services through the public school system. We'll watch and see how her speech progresses in preschool and re-evaluate in February, when we see the Craniofacial Team, and contact her sooner if her preschool teacher has trouble understanding her or her speech isn't up to the level of the rest of the kids in her class.
From the moment we walked out the door, all the way home, Rachel didn't stop talking. Little Stinker.
Monday, June 25, 2007
Hearing Test / ENT Appointment - Results
Dr. Rowe checked out her ears and said there was minimal fluid, and since she's not having any ear infections, or showing any signs of hearing loss, or extreme problems with her speech improving, then we'll wait on the tubes and retest in two months and make a decision then. If her ears aren't improved, then we'll do tubes. But for now, we'll just wait and see.






















