Category: Julia
Howdy! It’s been such a long time, but I just had to share with you the latest…witch’s teeth. Yes, I guess it’s been something my kids are well aware of because I’ve always told them that they need to brush their teeth so they don’t end up with witch’s teeth. You know, those teeth that are discolored and unsightly, possibly yellowish or even worse…blackish. So my kids have had fairly good dental check-ups. With three kids spanning over nine years, we’ve managed to only have two cavities, which isn’t a perfect record, but a pretty good one I think.
Over the last two months, Julia’s teeth had been changing color. After Christmas break, I noticed that the cracks and crevices on her molars were black, not gray, not yellow, but black. Then, slowly, over the past two months, the fronts of her teeth were turning gray and darkening. I thought for sure that Julia’s beautiful little smile was ruined. I had this image in my head of my beautiful, little Julia with shiny, capped teeth.
So Julia started brushing more and flossing better, but her teeth were looking worse each and every day. I thought that possibly some of the medication she nebulizes may have been getting the best of her princess smile. I finally had enough and took her into the dentist. I just couldn’t wait until May for her six-month check-up.
After giving the dentist the rundown on Julia and all her medications, vitamins, supplements, etc., he said the following:
“Any medical treatments or medications that maintain Julia’s health come as a priority over Julia’s dental health.”
Okay, not exactly what I wanted to hear, but I get that.
He continued,
“I’ve seen this staining before and most of the time it is caused by iron supplements that coat the teeth.”
Ah, ha! Makes sense. Julia’s last blood test showed that she was a little low on iron. To combat this, she was put on a children’s chew-able vitamin supplement that included iron.
And the best part,
“We can use a high abrasive tooth paste and scour the teeth to remove the staining.”
Best news of my day!
I said, “I don’t care what you have to do, she needs a beautiful smile to match the beautiful person she truly is.”
So after over an hour in the chair, enduring some pretty intensive scrubbing and buffing, Julia’s smile is absolutely beautiful! Her smile looks like a million bucks. I can’t tell you how relieved I am. Of course both the dentist and hygienist were completely amazed at how nicely Julia sat through the entire process. If they only knew what she has to sit through on a daily basis.
When you see Julia tell her how beautiful her teeth are. Bye bye witch’s teeth and welcome back princess teeth!
Julia's smile today as she's getting ready to head into preschool.
And just for fun…
Julia's prize for blowing like a champ during her PFT's at her last clinic visit at PCMC.
A visit to PCMC isn't complete without visiting Skittles the horse.
On Thursday, Julia and I went up to Primary Children’s Medical Center for Julia’s first ever Cayston experience.
Rewind just a bit…ever since Julia contracted pseudomonas, a harmful bacteria damaging her lungs, she has been on a medicine called TOBI. TOBI is an inhaled antibiotic that treats pseudomonas and keeps it under control. The only down side to TOBI is that it takes a loooong time to inhale, 30 minutes to be exact, which adds an additional hour onto Julia’s already hectic treatment schedule. Cayston does the same thing as TOBI. It is an inhaled antibiotic that treats pseudomonas just like TOBI. The truly fantastic thing about Cayston is…it only takes two minutes to neb. I originally said it took three minutes, but I lied. After timing it we found that it was two minutes exactly. TWO MINUTES! I am still in shock at how fast it nebs. It is A-MAZ-ING! Even Julia is surprised at how fast it goes.
Julia is the youngest patient at the Intermountain Cystic Fibrosis center to be on Cayston. She is one amazing four-year-old! I am so excited for her as we are taking back an hour of our day and loving every extra minute of it! Just in case you don’t believe me, we made a little video of Julia inhaling Cayston. It makes her cough a little, but she puts up with it for two minutes. She is such a trooper.
Julia with the Peanuts gang after her first Cayston experience at PCMC.
Altera nebulizer system...it can be battery operated and doesn't make a sound besides a beep.
The Altera is so small...it fits in my hand.
Cayston is different from TOBI in that is has to be mixed. It also has to be administered three times a day as opposed to two. Cost for a 28 day supply...$6019.69. And I thought there couldn't be a medicine more expensive than TOBI.
We are so excited about this new change to Julia’s treatments. We’ll keep you posted on how things go, but so far, we couldn’t be happier.
This past Thursday marked 15 years of marriage between my wonderful husband and I. It’s so hard to believe that 15 years ago we took the plunge. We were just kids…literally. Joe was 18. We got married the day after he turned 18 in fact. I was 19. That seems so crazy now and I know there were many who didn’t think it would last a year. But, 15 years later, here we are. We knew at the time that it was a good choice, the right choice for us. Even at 18 and 19, we just knew we wanted to spend our lives together. I look forward to what the next 15 years holds for us.
1995-Just two kids in love!
May 2009
On another completely unrelated note, there had been a recall of alcohol prep pads and other alcohol products. This may be a concern to folks in the CF community. I clean Julia’s Flonase spray nosel daily with an alcohol prep pad by Triad, so hopefully she doesn’t come up with a strange bacteria growing in her lungs. Some of the pads have been found to be contaminated by the bacteria Bacillus cereus. So hopefully I wasn’t shoving some strange bacteria up Julia’s nose. We’ll just have to wait for her next culture to see…
For details click on the link: http://www.cff.org/aboutCFFoundation/NewsEvents/01-11-FDA-Announces-Recall-Triad-Alcohol-Products.cfm
I have been super busy lately with my first semester coming to a close tomorrow. Yay, one down, five more to go! It will just fly by…I know it. So, it has been brought to my attention…twice that Julia has very white fingernail beds. It perplexed her pulmonologist at her last clinic visit and I just kinda brushed it aside. It was then brought up by my sister who always paints my girls’ nails. So, I need to get into Julia’s primary care physician to have him take a gander at Julia’s white fingernail beds. I really can’t think much past getting through tomorrow, so I’ll be dealing with fingernails after I bring this semester to a close, thank you very much!
Julia's little hands along with her white fingernail beds. What do you think?
Anyway…I need to switch gears and talk a little bit about my Olivia. Olivia came home from school a couple of weeks ago with a note saying we needed to look into her hearing. Back up a bit with me. When Olivia was born, she failed the newborn hearing test multiple times. After several attempts, she went in for another kind of test…the ABR. Olivia had to be asleep for the test and it took about an hour. She passed the ABR, so we have since just brushed that aside. Well, it is now coming back as a potential problem to add to our plate of challenges.
So last week, I took Olivia in to have a more extensive hearing test. The test took about an hour and the results of this test indicate that Olivia has a moderate hearing loss in her right ear. We are waiting to get in to see a ENT doctor to look into this a bit further and see where it takes us and specifically Olivia. The audiologist said that many professionals in her field would aid a person with a similar hearing loss as Olivia. She also said that many children have really liked the benefits of a hearing aid with similar level of hearing loss. So, to aid or not to aid…that is the question we have before us. For now, we are taking it slow and looking at things from every angle before making a decision.
My feelings…
I am very disheartened about this. As a parent, I just want my kids to be physically perfect. Not in the supermodel since of perfect. I want every part of their little bodies to work properly. I don’t want my kid’s hearing to be inadequate. I don’t want my kid’s lungs to breathe at less than full capacity. Ah, sigh…
It makes me very sad indeed. One foot in front of the other…always moving forward.
I look forward to wrapping up my first semester of grad school tomorrow. I will savor the time off and just enjoy my kids and family while I have more time to do so.
Olivia waiting to go on at the Festival of Trees.
This weekend was all dance. Olivia had two performances, one at the Festival of Trees and one that she shared with Julia at the South Jordan Equestrian Park. It is always so fun and rewarding for the girls to show off what they have been working on at dance. This was Julia’s first dance performance and she was excited about it up until it was time to go on stage. She was very nervous once she got out there, but she did great!
Olivia holding her cousin Ender.
Olivia loves to hold the baby. This is Olivia holding Ender after her Festival of Trees performance. If you ask Olivia what she wants to be when she grows up, she’ll tell you, ”…a mom and a dance teacher.” Ahhh, through the eyes of a child…
Dancing sisters
Pretty Julia
Julia's striking a pose in her dance costume
Julia performed a tap number. I had originally placed her in a traditional ballet class, but the teacher changed it to a tap/ballet combo class, so she gets to do both. She wore her tap shoes for three hours prior to the actual performance. She kept telling us that she had a ‘formance to do! So darling!
Julia's real potato head
I’ve realized that I haven’t mentioned how things are going in Julia’s CF world. So…since Julia’s clean-out, she’s had two pseudomonas negative culture results. The culture that came back last was kinda of the big one for me because it had been a month or so since she was blasted with the IV antibiotics and I thought it would be the most telling. Getting two negatives in a row is fantastic news. We haven’t gone two months negative for almost a year. Julia won’t have to do another round of TOBI until the day after Christmas. I’m not quite sure why she has to do TOBI again if she isn’t growing pseudomonas in her cultures. Sometimes it feels like I don’t have all the information. The big question I have is, “Can pseudomonas ever be eradicated?” My hope and dream is that it can be and that it has been in Julia.
Julia is such a trooper. She just got a new nebulizer machine this week. The old one had way too many hours clocked on it and was just tired. We rented Toy Story 3 from Red Box this past week and she loved it! We kept it for over a week and it was a treatment time favorite! We may have to make it a stocking stuffer. Julia insisted on putting her potato head parts on a real potato after being inspired by the movie.
A week late, but I need to comment on Austin’s baptism. Austin is now a big eight-year-old! He was baptized a week ago, on the day of the worst snow storm so far this season. He had many friends and lots of family brave the horrific driving conditions to come and share such a special day with him. I loved the fact that the day was just for Austin. It was a great day for him.
