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AN UPDATE--FINALLY

Oh, I love my Rosie child

You got the way to make me happy --Neil Diamond


Could I be any more of a slacker when it comes to this blog? The answer is NO-- but I do have a great excuse. I have had a major career change. At first I liked to say that I retired, but that would imply that I am no longer working and that would be hugely inaccurate. Undoubtedly my job now is the hardest, busiest, most frantic job I have had yet! But, of course, I am loving every minute of it.


On June 12th, I finished my last day as a teacher at Jackson Hole Middle School. With tears and very mixed emotions, I said goodbye to my students and an incredible group of colleagues who have supported me through the most transformative years of my life. When I started, I did not have children, my father and godfather were still alive and well, and I looked forward to a long career as a seventh grade English teacher. But life happens. The most emotional, exciting, thrilling, and heartbreaking years followed. One thing I have learned over the past six years is my mental health requires me to be surrounded by positive people who welcome me when I am hormonal, pregnant, grieving, silly, happy, and just trying to be myself when adjusting to the ever-changing nature of adulthood. JHMS was the perfect place for me. I suppose I act more like a seventh grader than a 37-year-old, but alas a new job beckoned.

Now I am a full-time mother of two precious girls. While I was teaching, I ignored almost all home responsibilities (aside from cooking because I love to eat), and Mike managed his business and our household. However, the poor guy needed a break. He could not do it all, especially because his business has expanded. He now owns his construction company Alternative Building Solutions and co-owns Grow Huts, a greenhouse business (www.growhuts.com), and a tiny house manufacturing company called Cabin Works (www.cabin-works.com). Though I am still not to be trusted paying the bills or balancing the checkbook, I am trying to do everything else-- with varying degrees of success.

I feel so grateful to be home with the girls and to manage Rose’s hearing loss myself. She is making tremendous progress, but she does require more support than the average baby. As a teacher, I understand why so many kids get frustrated with homework because when it doesn’t come “naturally”-- it is easy to give up. Already Rose has the most positive attitude. She is a pleaser, a great sleeper (though we still wake up to chug two bottles a night), and she is predictable which makes me more successful. But nonetheless, I wish things would be easier for her. From what I hear, this first year will be a major push and then things will settle down and fall into place. I am hopeful that is the case. Rose is already such a hard worker.

I used to panic about whether or not Rose was hearing quality sound. However, I have learned to trust the technology. We know that her hearing aids do not correct her hearing perfectly, so I am consistently evaluating the background noise in our house, determining whether or not she should be wearing her Compilot (an awesome Phonak accessory that works like a private FM system), and testing Rose and her hearing aids by speaking the “Ling sounds” and hoping she turns her head in response. (The Ling sounds represent the various frequencies and help us determine if she is actually hearing-- ah, oo, ee, mmm, s, sh). When she is in the mood, Rose turns toward the sounds beautifully. She is babbling B and D sounds which is beyond exciting for me. She has the precursors to M and P, and Neve loves to remind everyone that Rose is very good at oo and ah as well. Rose likes to "sing" and "talk,” and she already has quite the sense of humor. She makes fabulous eye contact and smiles all the time. Rose particularly enjoys her father's dancing skills. Perhaps she is laughing at him? We love to make her giggle and "go crazy." There is nothing better than her laugh!


Neve is in Pre-K at the Teton Valley Community School on Mondays, Wednesdays, and Fridays, and Rose and I book all of our appointments on those days. We are wild! Neve is a total “threenager.” She is so helpful with Rose and keeps me right on track. Lately I hear, "Mommy, that's a bad word," a lot. She takes dance class, recently rode in a scoot/bike race and if you ask her how she did, she will respond with, "I crushed it.” She loves gymnastics, coloring, and most of all--reading books. We all have Jackson ski passes for the winter, and Neve will be in ski school on Saturdays. Look out Teton Village!


Below is an example of a typical week for us. There have been a few overwhelming days in the transition as I adjust to my responsibilities. My sister has had to set me straight a few times when I complain/freak out about all the appointments, the constant disruption of a nap schedule (the plight of the second child), and the endless in and out of the house and back and forth to Jackson. Sometimes I get a little defensive when our case manager or a member of our team suggests Rose needs another intervention. Alexis reminds me that everyone who supports Rose has the best intentions. I think my brain is incapable of figuring out how to add one more thing to the calendar, and I just want to give Rose a break. But she deserves every opportunity, and I'll be damned if I can't do it all. I might not shower anymore (sorry Dad), I rarely wear make-up, there will definitely be typos in this blog, and I never remember anyone's birthday. Busy or not, the frustration that I feel for Rose only rises about once a month. It's just not fair that she has to deal with all this. When a light rain starts and slowly taps our steel roof, I get a pit in my stomach. Will she ever be able to hear that? I think about whether or not she will be able to hear the fire alarm in college (perhaps slightly premature to be thinking about this stuff--we’ve got another 18 years!), but I comfort myself by planning ahead.



So here it goes:

Monday: We have visits from the incredible women assigned to our case from the Infant Toddler Program. Almost every Monday we have speech therapy, and some Mondays we also do physical therapy and connect with Audrey our auditory specialist.

Tuesday: We are home with Neve which requires extreme patience on my part as our house gets covered in stickers, teddy bears, dress-up clothes, and puzzles. I just take deep breaths, let the house go to hell in a handbasket, and wait to clean until Neve is asleep, and I've had a drink.

Wednesday: Rose and I head to Music Together class with Susan Jones. Rose is obsessed. She sits up like a big girl and tries to move to the music. She kicks her feet and loves to hear Susan play the guitar, piano and sing. We are so lucky to do speech therapy with Marge Edwards on Wednesday afternoons as well. Marge is in Logan so we Facetime. I feel confident saying that Marge is one of the most influential and important people in Rose’s life right now. Marge has been like a fairy godmother to me, and she has supported us in every aspect of this journey. Rose’s success is due in part (a very large part) to her and all that she does for us.

Thursday: I might throw in a load of laundry that doesn't get switched until Friday and requires a second washing because it smells moldy. We also take Neve to dance class and love watching her "shake her booty."

Friday: We have miscellaneous appointments. For example, we might have to go to the audiologist and have an ear mold fitting, then go back a few days later to get the ear molds. We often have well-child check-ups, shots, ear cleanings, and nevermind appointments for me (because I am a idiot and screwed up my back). Of course in between all this stuff we must shuttle Neve to school, take the dog to the vet because he is almost 13-years-old, and do some fun things like see friends, go to the pumpkin patch, and Facetime with the grandparents and cousins! I’ve never been so busy. (Thank god I only have two kids-- I don't know how you parents with more kids do it! And thank god I have a husband who helps do all of this stuff!)

Rose is a total peanut! She is just 14 pounds and in the 2nd percentile for weight. Her cheeks, however, are probably in the 110th percentile. She is a bit delayed with her gross motor skills and reflexes, and she hates solid food (but loves to eat hearing aids). We are working with a wonderful physical therapist. She was at our house this morning and gave me great tips on how to develop Rose’s strength and muscle control. Apparently it is very common for a baby with reflux and hearing loss to avoid tummy time. Being on her stomach is uncomfortable for a variety of reasons and without the ability to see everything around her she wants to roll over immediately. I never thought about the fact that she feels the need to see in order to help her hear. So I am learning about how to best support her. (I spend a lot of time on the floor hence my back issues.) All the experts assure us not to be worried about her development at all. She is just on her own trajectory.


An old entry that I never posted but that is still timely

AUGUST 26- ROSE’S SIX MONTH BIRTHDAY


We are just leaving Logan, Utah and the Sound Beginnings office where audiologist Elizabeth Preston gave Rose an ABR test. Rose was hooked up to lots of electrodes, and the results confirmed that she still has moderate hearing loss. She now has a 50 decibel loss in each ear-- across all frequencies (less one frequency where the hearing loss dropped to 60 decibels). While I had extreme anxiety before the test, mostly because Rose needs to be asleep for an ABR and I was certain she would NOT sleep despite our best scheduling efforts, it was the best one we have had yet. Prior to, I suggested that Elizabeth serve wine to the parents to help them relax during the test, but we decided that was probably against university policy (especially a university in Utah). We swaddled Rose so she could not rip out all the cords, and Mike rocked her in her car seat. She was the perfect angel.

Rose’s hearing aids were adjusted to match the results (this is all done digitally and on a computer), and we fitted her new purple sparkle ear molds as well. She is ready to go-- and she is so happy!



Another old entry that I never posted but that might be of interest

August 13th

On Thursday night, we attended a fundraiser for the Pediatric Audiology Project in Jackson Hole. It was at the most gorgeous home of Berte Hirschfield, founder of The Pediatric Audiology Project. Berte Hirschfield has two grandchildren with hearing loss, and she is instrumental in expanding the audiology department at St. John's Hospital in Jackson. Berte's grandson Theo, a teenager, was at the party. I had tears in my eyes as we listened to him speak about the need for new equipment at our hospital. He and his family now live in Southern California, but they used to live in Wilson; he was in my sister-in-law's class for second grade. He couldn't be any cuter-- so handsome, a total surfer and athlete. At one point he said, "I'm like a normal kid . . ." and the crowd erupted in laughter and someone shouted. . . "You are a normal kid!" I am crying just retelling the story. Adele E. and Oscar E. were also there. Adele is in high school and Oscar is in sixth grade. With absolutely perfect pitch, Adele sang an Adele song-- and there wasn't a dry eye in the room. Adele spoke about her insecurities and described how it was her little brother's confidence with his hearing loss and hearing aids that finally made her comfortable wearing her own hearing aids. The three kids were so inspirational to us, and I hope we stay in touch and learn about their wonderful accomplishments. They make me excited for Rose's future!

Famed audiologist and author of several pediatric audiology textbooks Dr. Jane Madell is also a critical member of The Pediatric Audiology Project. She visits our hospital a few times a year, and Rose is fortunate to be able to work with her. Jane is able to conduct behavioral testing on infants by watching them start and stop sucking. She is unreal, and her results are astounding. She has adjusted Rose's hearing aids and works closely with our primary audiologist in Logan, Elizabeth. Years ago, they even traveled to Vietnam together to help children with hearing loss there. Jane lives in New York City and coincidentally she has a house on Long Beach Island-- just a few miles away from the Hudacsko's beach house. The Pediatric Audiology Project produced a video segment titled "Just Like You! Managing Hearing Loss in Children." It is phenomenal and a great inspiration to parents like me:

https://www.youtube.com/watch?v=V-rWfOjZPyU

I feel like a broken record, but I cannot say it enough. We are so lucky to be surrounded by unbelievable people who support us in every way. Thank god for smart people and technology!






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