Friday, December 22, 2023

The End of Rachel's Journey

I started this blog just over 19 years ago. Rachel was days away from turning 2 months old. I started this as a place for people to stay up to date on Rachel's Journey, and hopefully offer encouragement to other cleft affected families behind us on the same journey. And after the events of today, I have come to the realization that we have reached the end of Rachel's Journey. 

Yesterday marked 6 months since Rachel's jaw surgery. We have a 6 month post op appointment the end of next week with Dr. Martin. I think everything is settled on the outside. We'll see what he says next week about the inside. 

Today was the big day! After 3 1/2  years in this current set of braces, Rachel's braces came off!!! We had a mid morning appointment with Dr. Garcia whereas they took everything off, cleaned the glue off, took impressions for a retainer, took a couple X-rays, and took pictures inside and out for record keeping. 

This first picture Rachel took of the Xray shows a perfect side view of her new jaw alignment and the metal hardware that was placed during her jaw repositioning surgery. The second picture is like the one taken last month, except this one is with all the braces and brackets and wires completely gone.



After impressions were taken, Rachel was given a toothbrush to go and brush her teeth. She took this video in the restroom as she saw herself without braces and her new look for the first time. 


After the above checklist was done, we were able to leave for about and hour and a half while her retainer was made. We took a drive up to Oak Glen and went to the candy store and acquired a caramel apple to enjoy this weekend. We then stopped and took some cute pictures of her and her new look. 




Back to the office to get Rachel's retainer. The ortho tech gave Rachel the entire run down of taking care of her retainer, and making sure not to through away on any meal trays, etc. And then Dr. Garcia gave her the news that she only needs to wear the retainers at nighttime!! 


Rachel was given a Starbucks gift card and an appointment for when she's home on Spring Break in March if she feels she needs to have things checked on. We left a gift of homemade Christmas cookies and a thank you note and said our goodbyes. 

We went to dinner at Famous Daves tonight so Rachel could enjoy ribs and corn on the cob!! 

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It's crazy to think that this is the end of Rachel's Journey as far as her cleft journey is concerned. 

There's been some seasons where the journey was quiet, not much going on, just waiting for the next phase of the journey. 

And up until now, there's always been "a next season". But there is nothing left medically to be done. If Rachel chooses, she could have a lip revision or a nose job, but if you ask her today, she's perfectly happy with her new look and doesn't desire to have those things done. 

When Rachel was born, it was overwhelming to think about all that laid ahead of her, and for us as her parents. 

The Lord was with us every step of the way. We saw His hand on so many things through the years. Seeing us through six surgeries related to her birth defect. Countless doctors appointments, orthodontist appointments, finding just the perfect speech therapist that worked one on one with her for years, insurance difficulties and approvals and so much more. And we give Him all the glory!! May Rachel's Journey be a testament to His goodness! 


"For you formed my inward parts; 
you knitted me together in my mother's womb.
 I praise you, for I am fearfully and wonderfully made. 
Wonderful are your works; my soul knows it very well."

Psalm 139:13-14


Monday, November 27, 2023

Orthodontist Appointment

Rachel had an Orthodontist Appointment this morning before heading back to school, and it was the best appointment ever!! Rachel will be getting her braces off on December 22nd and she is beyond happy!! 


Dr Carter took an Xray today. It was the first one we've seen since her surgery in June. And it was most interesting to see Dr. Martin's fancy metal work! The metal on her upper jaw is what was placed for jaw repositioning. 


It's kinda bittersweet. Getting her braces off is just another step in Rachel's Journey really winding down...

Her last big medically needed surgery is behind her. 

Her jaw is repositioned. 

Her teeth are all straight. 

For over 19 years, we knew what things laid ahead for Rachel in this journey of having been born with a cleft lip, palate, and alveolar ridge. And with the pending removal of her braces in a few weeks, that means that each of those milestones have been checked off the list. The only things that lie ahead for Rachel is if she wants some cosmetic things done like a lip revision or nose job. But everything medically has been done!! 

It's amazing to look back at how far her mouth has come. Here is a comparison over the last 12 years. 


Monday, September 25, 2023

3 Month Post Op Appointment

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. 


Dr. Martin said everything looks great! That at this point the bone regrowth is complete and it's just a matter of soft tissue that still needs healing and settling. There are no longer any restrictions. We will continue to follow up with Dr. Garcia for band adjustment. 


They took 3 month post op pictures for her chart and our next appointment with Dr. Martin will be in 3 months, when Rachel is home on Christmas Break. 

After Rachel's appointment, she hit the road back to Phoenix! 

Tuesday, September 05, 2023

A Week of Milestones

This last week held a couple of milestones for Rachel!

We celebrated Rachel's 19th birthday a few days early with her favorite dinner, cake, and presents. We were traveling to Phoenix on her actual birthday. I can hardly believe our baby is 19 and this is the last year we will have any teenagers! 

On Thursday, Rachel's actual birthday, we hit the road early afternoon to make our way to Phoenix, to move Rachel back to college. Thursday night, and all day Friday we spent unloading the storage unit and moving in to her apartment on campus, setting up her bedroom and the living room she will share with three other girls.  



Saturday we went to breakfast and just spent time together, visiting the Lope Shop and getting drinks at the campus coffee spot. We went for a nice dinner and then it was time to say our goodbyes and then we needed to hit the road for the long drive home. 

Rachel will be home in 3 weeks for a post op appointment with Dr. Martin. 

Rachel had a couple of days to settle in, getting to know her roommates, and developing a new routine before school started today. She had one class today and absolutely already loves this professor. This years classes are all related to her major, which she was very much looking forward to! She sent me this picture for her 1st day of Sophomore Year at College. 

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.

Friday, August 18, 2023

Side by Side Comparisons

It's been 8 weeks. Time for some Side by Side comparisons! 



 
Before pictures were taken 1 week prior to surgery. 
The comparison pictures are current as of today. 


Tuesday, August 15, 2023

8 Weeks Post Op



Today marks 8 weeks since Rachel's surgery!!! 

Rachel is pretty much back to her pre-surgery normal, with the exception that she wears rubber bands on her braces and has to take them off when eating. 

We had an Orthodontist appointment today and things are going as planned. New bands were placed on her braces and multiple packs of rubber bands were given. Because she goes back to college in 2 weeks, we won't be back to Ortho until Thanksgiving Break, unless Dr. Garcia contacts us and tells us otherwise (we saw Dr. Carter today).  

Post Op appointment next week with Dr. Martin.  We are anticipating the last of the food restrictions to be lifted and not returning until 6 months post op, which would be while she's home on Christmas break! 

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. 


Up next was an appointment with Dr. Garcia, the orthodontist. The office manager and Dr. Garcia were very excited to see Rachel and learn that she was one month post op. The last time we saw them was the week before surgery and at that time, surgery still wasn't approved. 

Dr. Garcia was very happy with Rachel's bite and how wonderful she looked. She is now the one making the calls on band adjustments and getting Rachel's new jaw alignment settled. We don't return to see Dr. Garcia for 4 weeks as well. It could get kinda tricky with Rachel going back to school and she might need to come home a weekend here and there in order to be seen on a Monday (she has no classes on Mondays), hoping it all works out. 

Dr. Garcia has been seeing Rachel as a regular patient for over 10 years. 

Two great appointments, diet upgraded, no need to return for 4 weeks to either place, calls for a celebratory lunch!! And of course Rachel chose Chick-Fil-A! She enjoyed a chicken sandwich and took her time and ate small bites, had no trouble, no pain. Happy to be able to chew food again after a month of not chewing! 


One month out and I asked Rachel if this experience had been better or worse than she had expected. She said the afternoon/evening following surgery was worse than she had expected, between the nausea and throwing up. But after that, it was better than she had expected as she was on soft foods following surgery instead of a full liquid diet. 

Either way, Rachel has done amazing through all this. She's been a real trooper and has done great at following what was expected of her.

Friday, July 14, 2023

Happy Friday!

Rachel did her hair and make up this afternoon.

I couldn't resist taking a picture of how cute she is 
and how great she is looking! 
3 1/2 weeks post op
 

Wednesday, July 12, 2023

LeFort 1 Osteotomy: Tips and Advice

When I started this blog 18 1/2 years ago, the primary reason was to have a central place that could keep friends and family updated on Rachel and how she was doing, surgery dates, recovery, etc. 

Because I had found helpful information and encouragement in a blog whereas the little girl was older and ahead of Rachel in her treatments and surgeries, I wanted Rachel's Journey to not only keep our family and friends informed as to Rachel's progress, but I wanted it to be a source of information and encouragement for others who were also on this journey of having a cleft affected child. 

Since keeping this blog, we have made many "cleft friends" via Rachel's Journey. While we've never met in real life, our hearts are all tied together having had a child born with some sort of a cleft and all that entails.  

I know many of my posts through the years have been helpful in sharing what to expect, some tips we found helpful for Rachel, as well as offering some hope and encouragement, I wanted nothing different when it came to sharing about this surgery, Rachel's biggest surgery in her journey. 

Therefore I have constructed the following information and things we found helpful through this recent surgery. 

Every child is different. 

Every Surgeon is different in how they do things. 

Every outcome is different. 

The following information and tips are things that pertain to Rachel and her surgery and what worked for her recovery. Hoping that once again, some of this information is helpful to our cleft friends. 

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Length of Surgery

The length of surgery will depend on if the upper jaw and the lower jaw are being repositioned. 

Rachel had only the top jaw repositioned. We were originally told surgery could last 4-5 hours, however surgery lasted just shy of 3 hours. 



Hospital Admission

Rachel's surgery was the first one of the day for our plastic surgeon. She spent a quite a few hours in recovery while waiting for her to come out of anesthesia and then waiting for a hospital bed to open up. It was early evening by the time she actually got to a room. She ended up spending two nights in the hospital. 


Being discharged home all was dependent on:


1) Her ability to take in liquids. They want to make sure dehydration wouldn't become an issue and land you back in the ER. 


2) Her ability to take oral pain meds. I don't think Rachel received any IV pain meds after the first night. She was on liquid Oxycodone and Tylenol. 


3) Her ability to be up and walking and moving about. The morning after surgery, Rachel was in her own comfy clothes, and was up and about. Going to the restroom herself, walking the halls, and drinking, drinking, drinking. 


They kept her a second night to watch for any signs of respiratory distress that could surface due to all the swelling. Respiratory distress was not an issue for Rachel. 



Dietary Restrictions

At Rachel’s Pre-Op, we were told she would be on liquids only for 2 weeks, but she was actually placed on a “soft mechanical diet.” Meaning anything soft that requires NO chewing.

Protein is a huge aid in healing, so we really pushed (and still are at 3 weeks post op) the protein. Drinking at least 3 protein shakes a day, applesauce, pudding, mashed potatoes, refried beans, greek yogurt, juices, milk shakes, frappacinos (double blended worked out great). One day I even cooked up glazes carrots in the instant pot really soft and kinda mushed them, she was in heaven with something different. 


Rachel had done some research ahead of surgery and one of the things another cleftie recommended was  to have baby spoons. We bought some and they have been most helpful!! They are small, and soft and have worked out great! 


Buy the multiple pack as you’ll be using them a lot! And be sure to pack one in your hospital bag in the event your child is put on a soft food diet following surgery. 


Rachel was not allowed straws or any drinking that required slurping. She used spoons for milk shakes and frappacinos. She used a paper cup and drank her water from that. 



Talking/ Communicating 
Prior to surgery, we bought a white board from The Dollar Tree. Rachel packed it in her hospital bag if she needed to write on it to communicate with the nurses in the event we were not there. 

Because of the internal swelling, pain, and splint, her speech was hard to understand, especially the first few days. Quite a few times we had her text out what she was saying/needed those first few days. 

She became easier to understand as the days went by and she’s able to open her mouth more. She's been a lot easier to understand since the splint came out. 

Pain Management
Rachel received Oxycodone and Tylenol while in the hospital. She was discharged with those meds as well. 

On Day 3 Post Op, we were told Advil was acceptable for stacking with Tylenol as they would not refill the Oxycodone. 

The white board we bought for taking to the hospital, we used for keeping track of her meds once home. I set up this little spot on our kitchen counter with everything we needed.



We were stacking meds. First few days it was the Oxycodone and Tylenol and then it was Advil and Tylenol. We were evenly spacing apart the two pain relievers so she constantly had some sort of pain relief in her system. We kept track of “Last Dose” and “Next Dose” which made it easier to keep things straight. It also allowed her Rachel to know when she could have something in the event she was up at night and didn’t feel the need to wake one of us. 


Rachel also had an antibacterial mouth she uses twice a day. The first couple of days home, she was also on Colace, as pain meds and anesthesia can make you consitipated. 

 

Swelling/Bruising

Rachel’s swelling was probably the worst around Day 4-5. And the only bruising she really had was on Day 3 just under her eyes, but it went away over night.


At our 1 week Post Op appointment, even our plastic surgeon was not impressed with her swelling. Apparently it can be pretty bad! 


We were not given any discharge instructions to put on ice packs. I did do it one day, and Rachel actually said she felt like it made the pain worse.

The first 72 hours, they want you sleeping upright, which is easy in a hospital bed. Once home, they suggested the head staying at a 45 degree angle propped up on pillows. 

Our plastic surgeon said the more upright and walking about you can do following surgery, the better it is for keeping the swelling down. 


One week post op and our plastic surgeon said she can’t undo thing is she chooses to sleep flat in bed, but she could wake up a little swollen. So it all depends on if you want to be totally comfortable and are okay with some increased swelling, etc. 


We moved a recliner into Rachel’s room and she slept every night in the recliner for the first 3 weeks. 


Breathing 

Because there is so much swelling, it is possible to have some difficulty breathing, especially out the nose following surgery. The nasal passage will also be irritated and swollen as they will do a nasal intubation during surgery for an airway. Be prepared for bloody noses and a lot of dried blood following surgery.  


In Rachel’s research, she also read it was good to have some Breath Right Strips on hand to put on the bridge of the nose in the event of a lot of swelling and congestion.  Rachel didn’t end up using these.

Following surgery, one of the things prescribed was a saline mist nasal spray. It was given to her every 2 hours in the hospital. Sometimes they’d forget to give it to her, so she would ask. She also came home on this and it helped tremendously the first week!!

Rachel also had read that having a humidifier going in the room helps with easier breathing and making the nose moist. We bought a new filter and pulled out that humidifier from the toddler days (yes! I still had it!…LOL). Rachel said the humidifier helped a ton that first week!



Physical/Activity Restrictions

Only restriction Rachel was given was to not bend over to avoid pressure in her head. This was just the first few days. 



Mouth Splint

Rachel came out of surgery with a splint attached to her upper braces. Everyday, throughout the day, she had to practice putting her teeth into that splint. The splint affected her speech quite a bit. And made it hard what she was saying at times. 


Rachel had her splint in for 3 weeks. Dr. Martin said it's normal to be in for 3-4 weeks. 



Misc Other Tips and Advice
* Rachel was given an ointment to put on her lips a couple times a day. Her lips looked pretty bad from all the swelling and stretching of the lips. We also bought a package of Aquaphor Lip Repair Sticks. She applies it constantly to her lips.

* Buy a baby tooth brush. They will tell you oral hygiene is still very important. The oral mouth wash will help some. But a baby tooth brush has a much tinier head and can brush some of the teeth a lot easier than a normal size tooth brush. 


* One of the other things Rachel learned in her research was having squeezable condiment bottles on hand. This was going to be more helpful when we thought 1) she’d only be on liquids and 2) her mouth would be banded tighter, making it harder to open her mouth. We have only used one once so far and that was to fill with warm water and Rachel kinda just rinsed her mouth out. 




* This time around, Rachel had terrible time with the anesthesia making her nauseous, which resulting in throwing up a few times. Rachel was given Zophran and Compazine. One of the recovery room nurses gave us some alcohol wipes to open and wave just under her nose. It's suppose to help ease nauseousness. The other thing that also helps is peppermint. So if you have any peppermint essential oils, remember to bring that in your hospital bag, just in case. 


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These were the things that I felt were the most important to share and give advice and tips for. 


However, if you are reading this post, and you have questions, perhaps something I might not have covered, please leave a comment on this post, or even sign Rachel's Guestbook, leaving your email, and I will email back! 


I would love to answer any questions and offer and support and encouragement to help ease any fears you might have if your child is on the brink of having this surgery! 

Tuesday, July 11, 2023

3 Week Post Op Comparison Pictures

Today is officially 3 weeks since surgery! 

After Rachel's appointment with Dr. Martin yesterday, the girls and I went to Disneyland for the afternoon/evening. Rachel did great - ate a couple of good sized meals now that the splint is gone! What a difference a full stomach can have on ones energy and mental status! 

I took this weeks comparison pictures in the exact spot where I took her before pictures the week before her surgery. 


The difference in her face is quite amazing. We aren't sure exactly how it happened, but it looks like her face is more elongated now, and not so round. And the space between her upper lip and nose is quite a bit different. And her nose is lifted and more perky. 

The biggest noticeable difference is looking at her side profiles. Her lips now meet. Nose is lifted. And her chin isn't as pointy. 



She still has some swelling in her cheeks, it could take a while before the swelling is all gone. Especially if she's back to sleeping in her bed. It'll be interested to see if much changes once the swelling is gone, and everything has settled.

Monday, July 10, 2023

3 Week Post Op Appointment

Rachel was desperately hoping that today would be the day that Dr. Martin would remove the splint. She was prepared to turn on the waterworks if he said otherwise. Thankfully, no tears were needed, he was happy with her bite and he removed the splint! 


With the splint gone, now she just has rubber bands that help keep her jaws in alignment. We were taught how to apply news ones if they break and how she should be resting her jaw. 


She remains on a soft food diet, but was given the okay to use a straw! Last night was the first night in 3 weeks that she slept the entire night in her bed. Otherwise, she's been sleeping upright in a recliner that we moved into her room. She woke up a tad bit more swollen, but the good nights rest was worth it and she actually had Steven move the recliner out of her room and back into our living room. 

We return for another post op appointment in 10 days. 



Wednesday, July 05, 2023

2 Week Comparison Pictures

 It's been two weeks since surgery. Here is the latest set of before and after pictures.


And here are the front view pictures: 


She still has quite a bit of swelling. She's continuing to sleep upright in a recliner to help with the swelling, but maybe at this point, it'll just take time for the rest to gradually go away. 

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. 


We had an appointment today with Dr. Martin. Rachel was really hoping that he would remove the splint today, but he did not. She was pretty disappointed, but hoping that next Monday will be the magical day. 


He looked inside and said everything is looking really good, healing, putting her teeth into the splint nicely. Some of the questions and concerns we had he said were all normal. I'm thankful for the weekly post op appointments!! 


We made a stop at the grocery store on our way home for a restocking of soft foods. And a stop off at Miguel's Jr for a couple of bean cups. Up until now, I'd been concerned about making her smoothies with yogurt and frozen strawberries because of the seeds getting in places that aren't healed, but I asked about that today and Dr. Martin said things were healed and strawberries would be fine. Perhaps having something new to eat will help her get through another week!