Posts Tagged ‘ear’
OK, now that I’ve gotten that out, I feel much better. This week I feel like the Gingerbread Man…run, run as fast as you can. You can’t catch me, I’m the Gingerbread Man. I’m really runnin’ at mock speed this week…big assignments at school…Valentines madness…12 + mile runs…kids’ homework…classroom helper…psuedumonas…TOBI. I honestly love being super busy, but there are a couple of elements that I would remove with my magic wand if I could.
So, last week Olivia was fitted for her hearing aids. I took my personal bias and placed it on a shelf for this appointment. I went into this appointment with the goal that I want Olivia to have the opportunity to hear just as good as everyone else. I don’t want her to miss out on anything because of her hearing. The only aspect of this whole hearing aid business that made me second guess my original goal is the social aspect. I’d like to skip admitting that there will be some social ramifications for wearing a hearing aid to school. Let’s just face it…some kids can be pretty mean. Some parents often neglect to instill into their children the value of accepting diversity in others whether it be the color of one’s skin or a little gadget attached to one’s ear. So, despite this, I decided I want to give Olivia the opportunity to hear the best she can regardless of what others think. I want her to give it a try and to see what she thinks and to make the decision for herself.
Olivia, on the other hand, is super excited. She had some squishy, pink clay squirted into her ears to make a mold of the shape of the inside. After that, she got to pick out what colors she wanted. I wish I could have filmed her excitement. She was so ecstatic. She picked out purple for the part that goes behind her ear and pink, purple, and white swirl for the molded part that goes into her ear. Olivia’s hearing aids will be quite the fashion statement. She can’t wait to get them and try them out. I can’t wait to see her in them!
On to Julia…ah, Julia. Julia had a phenomenal clinic visit this month. She is blowing a like a champ. Her lungs are blowing at 98% capacity which is just fantastic. Culture results were a big disappointment. Julia cultured pseudomonas again. Big downer for us because she has been pseudo negative for quite some time after her clean-out. She seems to be well, but I have noticed a difference in her energy level. Julia hasn’t napped for months and months and now she gets pretty run down at the end of the day. For example, it’s noon right now and she is crashed out on the floor. Not typical of my little Julia. Julia is back on TOBI which adds an additional hour per day of treatment time. I feel like we’ve lost the pseudomonas battle and Julia is married to it. The game plan now is to simply treat it with TOBI and see how it goes. It does worry me that it’s there slowly damaging her little lungs, but I’ve accepted pseudomonas into our family as a permanent fixture.
Austin is fantastic. He’s been busy with school, boy scouts, ice skating, and skiing. He is great!
We are hanging in there…always looking at the bright side of things. Spring is almost here. We’ve had some pretty warm days hitting numbers in the 50′s. I look forward to what adventures warmer weather brings our family.
Julia practicing with a mouthpiece. If any parents have a suggestion how to make the transition from mask to mouthpiece, please let me know. Julia is anti mouthpiece right now.
Austin and Olivia waiting to go out on the ice.
Olivia started out in Snowplow Sam 1 and was quickly moved up because she wasn't crying and rolling around on the ice like the rest of the kids.
One of Snowbirds many lifts. We live just minutes away from this paradise.
Austin is getting a good handle on skiing. Joe looks forward to hitting some black diamonds with his favorite son...someday.
My two favorite guys!
Friday was Olivia’s appointment with an ENT. There are a few things we now know for sure:
1. Olivia has hearing deficiencies in not only her right ear, but her left ear as well. Her left ear is the better of the two and the right ear takes a big dive right around 2000 HZ, which the doctor says is about what frequency a woman’s voice is. He did say that with the level of deficiency that Olivia has, she would probably have difficulty hearing me if I were talking to her with my back turned.
2. The doctor does believe that this loss was present at birth and was picked up by the newborn hearing screening test. With Olivia passing the ABR at about three weeks of age, we thought we were “out of the woods.”
3. Olivia’s outer ear looks great! There appears to be no problem with her outer ear. Olivia did have a CT scan up at Primary Children’s to determine if there are any problems with the inner ear. The fear is that her hearing loss could be progressive, causing her hearing to worsen over time.
4. The chances of Olivia having a hearing aid are high. This doctor said they like to have kids try it out with this level of loss and go from there.
We will go back to the ENT doctor soon to see what he thinks about the scan and go from there. I’ll keep you all posted!
Olivia getting ready for her scan.
Such a brave little girl!
So, why does this seem so much harder for me to accept? If she were getting glasses, I know it wouldn’t be such a big deal. I showed Olivia what hearing aids looked like on the internet and explained to her what they were. She is not too excited about trying them out, but I think she will. They do come in all sorts of fun colors. We’ll just have to wait and see what we are to do next. For now, she is sitting closer to the teacher with her left ear, her good ear, closest to her as well. For now, I am trying to stay positive and keep my preconceived notions about hearing aids out of the picture. They’re not just for old men and “special” kids right? For those who know me, I’m totally joking! I love old people and grew up with a very “special” brother…and as a matter of fact, my mom has hearing aids and I promise, I’ve never made fun of her. Deep breaths for this mama…
On another note…week one of marathon training is over! I’m still alive! I’ll keep you posted on my running and its connection to CF fundraising. I need to get some kinks worked out and then I’ll let you know how you can get involved.
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.