Tuesday, September 14, 2010

Back to Palo Alto...oops accidental detour!

So Sunday, Patrick and Sofía leave for Phoenix, and the girls have a dramatic farewell.  They hug each other and say how much they love each other, and how much they will miss each other. Again this was very emotional for me as I knew hard it was for them to say goodbye. It only took Anise 4 minutes to stop crying and start reading.  Uncle Leonard had a Norman Rockwell biographical book, with a chronological rendition of all of his work...Anise was enamored. I went on to ask her what she noticed in the pictures, and she looked up at me and says, "Mommy, there are a lot of dogs in the pictures."  It was cute.

We spend the rest of the evening with Aunt Rosie and Uncle Leonard, had a nice warm home cooked meal (thanks Aunt Rosie!), and off to bed, as tomorrow (Monday) we would be driving back to Palo Alto, CA.

Monday we wake up and head downstairs and the 1st thing Anise asks for...surprise! Cinnamom Toast Crunch cereal...her new favorite breakfast, lunch, and dinner.

We ate breakfast headed up to get ready and packed.  I have to say the draining part of it all was asking Anise to let me pull her hair back and to let me put the antibactirial ointment on her ear.  She did not want any part of it...and after a few minutes of wailing, she would give in.

Side View of Anise's bandages
Side View 2 Anise's bandages

So we said our goodbye's...thanks Aunt RoseAnne and Uncle for your hospitality, Anise got somewhat antsy, but knew that she was ready for a nap.

Our journey back to Palo Alto began, it would be a 2 1/2 hour drive back, and I knew Anise would be sleeping.  During my trip my navigation device died (Shame on our reliability on technology!!!!). As I pursued to drive I realized that I had made an accidental wrong turn and ended up in San Francisco...yes San Francisco. I panicked for a split second, and said to myself, "you either panic and freak out, or you can follow the signs and head over to the Pier 39, and make the best of it!  Anise was in good spirits, we had clam chowder for lunch, saw the sea lions, and made for a good afternoon.  Once we figured where we needed to go, we made it back to the hotel in about 40 minutes. Our detour turned out to be very adventurous, and I didn't freak out!

San Francisco
Bay Bridge

Pier 39

Pier 39 and Sea Lions from afar

Fisherman's Wharf
Sea Lion statue @ Fisherman's Wharf

Monday, August 23, 2010


This past weekend Thurs thru Monday, we had the opportunity to drive two and half hours to Sacramento to visit our Aunt RoseAnne and Uncle Leonard. Patrick and Sofia were there waiting for us, it was amazing how happy the girls were to see each other! Sofía definately had a very hard time to be away from her sister, as Rhonda our daycare provider put it best, "It was as if Sofia was missing a limb." It was great to see my hubby and my other princess! I was emotionally and physically exhausted, and my wonderful husband took on full daddy duty to let me rest and sleep in. One of the best things was not to worry about cooking or what I was going to feed Anise. Aunt RoseAnne was so hospitable, and made some delicious meals...and discovered that both of my daughters love Cinnamom Toast Crunch...they cleared out her supply. Thanks Aunt Rosie and Uncle Leonard! I so appreciated it!

1st day at Aunt Rosie's and Uncle Leonard's

It was a handful to keep the girls from running and jumping, as they had missed each other so much! I felt pretty stressed that she would get hurt and wondered if all this activity would hinder Anise recovery. I was still overcome by the joy to see my hubby and Sofia,and knew that the best medicine for Anise was the presence of her sister.

Happy to be together-best friends

The other amenity that the girls loved were the wild turkey that live in AuntRosie's neighborhood.  They loved the turkeys!

Wild Turkey's, even on someone's roof!

The day after bandages off...tough.

Anise is up and down, she is happy one moment then the next she upset. Dr. Roberson said she she have mood swings based on the new sounds coming in through her new ear canal. We have been couped up in the hotel all day until I said we are going for a walk. We ended up driving 5 minutes to Stanford Shopping Center. I figured that I would spoil my little one with a Sprinkles cupcake and Pinkberry yogurt. She was so happy to be out and about, and I was even happier...yay!

Anise happy to be at Pinkberry's

Mommy and Anise at Pinkberry's.

Saturday, August 21, 2010

Dr. Roberson-post surgery-out of order.

While waiting for the surgery to be over I was overcome by emotion, I couldn't believe that I was here waiting for the the doctor to come out and give the news.  I was anxious, nervous, and hopeful all at the same time. Dr. Roberson came in right after the surgery was over, he was very pleased of the outcome of the surgery, he explained some logistics of recovery, aftercare, and the outcome of her hearing. He was very caring and could see in my face that I was very relieved that everything was a success.  It validated and reassured me that it was all worth it.  Soon Anise would be coming out, and into my arms.

Thursday, August 19, 2010

The man that made the magic happen-Dr.Roberson

Anise and Dr. Roberson

Anise happy to have bandages off: Before/After

Anise before bandages were taken off--Note: Happy

Anise is waiting for Dr. Roberson to take bandages off, she really wanted the headband as she called it to be taken off. We opted to go in and have the bandages removed by the doctor versus us taking them off at the hotel.  To be honest, I wasn't sure if my stomach could handle the unknown (of what was under the bandages....and I am glad I opted to go in for the doctors to do it! She was really excited. Probably the most excitement she had shown since the surgery.  Dr. Roberson and his medical assistants came in and really made it exciting for her.  Praising Anise on what a good patient she was, and as you can see in the picture above, she was bribed with a plethora of Tinkerbell and Princess stickers...always work...wink...wink.

Well, the happiness only lasted for a few minutes...as they were taking off the bandages, a little piece got stuck on her skin graft, and then (prepare your stomach) the blood came, and Anise when bazurk! She was wailing for about 15 minutes, and until then I had to hold her tight and my heart was aching for her!  At this point she became so paranoid for anyone touch her ear.  I politely asked everyone to leave as I felt that their presence was making her more upset.  Everyone left, and I tried to do what the doctor instructed me to do, which was put a bandage over the skin graft area on the back of her head.  After another 15 minutes, Anise finally let me do it, and it didn't come easy.  Up until now, this was most exhausting--emotionally...being able to explain to your 3 year old daughter that you will not do anything to hurt her...yet you have chosen surgery for her, and are putting her through this (again this is guilt part of me...I know it's for her own good).

Anise after bandages were taken off--Note: Angry

Wednesday, August 18, 2010

The day after.

Our hotel room has a dry erase wall, and she was having a blast with it!
Anise is good spirits, she is up and about. Woke up with an appetite.

The evening of the surgery.

Drive home
When we got to the hotel, I was exhausted, sore and emotionally spent.  I was so relieved that my brother, Joe made the trip, as I was able to make a run to the grocery store, and just take a mini break.  To our surprise our hotel surprised us with flowers and balloons...thank you Hotel Keen! Anise was out of it but she certainly acknowledged with a smile.  Anise has been sleeping for the most part, she has not eaten all day so I am going to wake her up to eat.  She got up and nibbled on my cheese puffs and oatmeal. She has not gone to the bathroom all day which are the effects of the anesthesia.  It has been an emotional day and I am spent, and I am trying to rest with her, but it's hard to.  A few hours after arriving at the hotel we recieved an Edible Arranagement from our friends Brandon and Marci Lang. It was also greatly appreciated as fruit was exactly what Anise wanted. Thank you Marci and Brandon!  She woke up again and was asking for ice cream. She wants ice cream we will go get ice cream.  She ate it all, and was happy but loopy. 

All went well to get to bed, she watched Tinkerbell and fell asleep.  We talked to daddy and Sofia tonight, they are getting ready to travel to Sacramento to see Aunt Rosie and Uncle Leonard, and we will meet there. While I was on the phone with Patrick we wanted to make sure that Sofía could take a look at some pictures of Anise as she was having a hard time without her sister. As she saw some pictures of Anise after her surgery, the questions began, "Why does Anise have purple bandages on her head, why is she wearing PJ's?"  Sofia is lost without Anise. We can't wait to see them in Sacramento! 
Not even a lollipop makes her happy.

Just laying in bed, not wanting to do anything

Anise curled up in a ball

Tuesday, August 17, 2010

Out of Surgery

Anise is out of surgery and is pretty out of it.  She was crying hysterically coming out of anesthesia, so they brought her out to me and she calmed down pretty quickly. She is sleeping right now, but the surgery was a success! Yay!

1st incision

9am, 1st incision made. Let the magic begin! Atresia repair is estimated to take 2 1/2-3 hours.

9 de la manana, 1er incision. Que la magia comienze! La operacion va a durar de 2 horas y media a 3 horas.

The main event: Atresia Repair-Dr. Roberson

At 8:45am, Dr. Roberson came in to let me know what he is going to do, and ask questions about where the insicion is going to be. He said once he is open up behind her ear, he will place the ear canal, and drill the cartilage that is where the canal should be, then he will get through the middle bone, and then make her an ear drum.  Dr. Roberson does this surgery every day, and is the best doctor in his practice.  He make sure that I would have updates via his nurses to make me feel calm.

Dr. Schendel removing lip hemangioma

At 8:30, Dr. Schendel came in and told me that he revmoved the lip hemangioman on Anise's right upper lip, she is doing great, and they will run the mass to pathology, to make sure they know exactly what it was.  He put in dissolvable stiches on her lip, and special instructions for Anise...no binky.  She is not going to be happy...oh no!  This surgeon works in the same practice as Dr. Roberson at the California Ear Institute, he is a plastic surgeon, and did us the favor to remove the hemangioma during the same trip...thank you Dr. Schendel!

The Big Day!/Llego el Dia

Right before the surgery 6:30am
We made by 6:30am, Anise was very emotional and all she wanted was fishy crackers, and of course she couldn't eat anything after midnight. For any of you that know my Anise...she is a snacker, she is always has snack in hand, and she wakes up asking for a granola bar or fishy crackers, so she was not a happy camper.  We talked up the fact that she would be getting a present after the doctors took care of her lip and her ear.

Anesthesiologist came in and explained what his role is during the surgery. He was very nice, and very attentive giving me a reassurance that he will watch over Anise.

Nurse came right after and gave Anise a "happy juice," this will make her groggy, and will help the Anesthesiologist put in the IV without her knowing it! Yay.  Within 15 minutes of her taking the juice, she was out of it, and within 5 minutes of that they took her from my arms and off she went.

After Happy Juice

Monday, August 16, 2010

We are here in Palo Alto, CA! The day before our big day.

So Patrick and Sofía drop us off at the airport at around 5:30am, and both girls are excited because unbeknownst to them, their Aunt Carolyn from NYC, sent them Pillow Pets.  Apparently it is the toy to have.  Sofía and Anise have been eyeing them on the Sprout channel commercials.  Aunt Carolyn had called us about a week before asking what she could the girls for this upcoming journey...and we politely suggested the Pillow Pets.  To our delightful surprise, the Pillow Pets arrived a couple days before our departure, and we had been talking it up with the girls that we had a big surprise for them when we got to the airport.  Patrick and I, it would be perfect to give them the pillow pets right before we said good bye (decoy), so that it would be less emotional for them...it definately worked...thanks Aunt Carolyn and Uncle Joe!

We are here safe and sound. Anise is in good spirits.  Flight was smooth, getting the rental was a breeze.  I was exhausted by the time it was all said and done. Everyone was very helpful! They let us check into the hotel way before schedule @ Hotel Keen. I have so many overcoming feelings right now. Missing my hubby and my Sofia. I knew Sofia would have a hard time away from her little sister.

It has been a whirlwind of a day, winding down after having our pre-op appt today with all of the doctors, a slew of hearing test, and to top it off we started our morning at 4am and no nap-OUCH! Everyone was nice and accommodating.  They went through all of the events that would take place the day of the surgery. I think the biggest bit of information that I took from the pre-op appt is what Anise will be like after the surgery.  Some pain from where they will take the skin graft to line the ear canal, but interestingly they said that right after surgery, Anise might be overwhelmed by the new sounds coming into her ear.  Even though there will be packing in her newly opened ear canal, her brain will processing all these new sounds. Being in loud places will be very overwhelming, and she might get irritated very easily.  My heart aches for my baby Anise, but I know that it is all for her best interest.
Waiting at our pre-op appt.

Finally to bed and Anise is squirrely, she is giddy even though she can hardly stay awake.  I think she is intrigued by her new surroundings. We have our wake-up call set at 5:15am, and Anise's new beginning starts tomorrow.

I pray that God gives me strength to be strong before, during and after the surgery. I pray for the hands of the doctors that will be performing the surgery, and that Anise will be resiliant for all that is to come. I also pray for Patrick and Sofia, that they know that we have them in our hearts, and may God give them peace. I would also like to thank my little brother for making the trip to Palo Alto to support Anise and I.

Saturday, August 14, 2010

Couple of days before surgery/ Solo faltan días

I can't believe that in less than 48 hours we will be hopping on a plane flying to San Jose, CA.  This is what we have been waiting since Anise's birth, right?  Why do all of sudden, I have these knots in my stomach. Anxiety. Fear. Happiness. Faith. So many feelings happening all at once, but the one thing I know is that we are going to the best doctor, and I know that we made the right choice for Anise.

Today Patrick explained to Anise and Sofía, in kid terms what was going to happen in the next couple of days. Anise you will be traveling with Mommy to get your ear fixed, so that you can hear better.  Anise says, "Daddy, I am going to be a good girl, and I am not going to cry, but will I get a Pet Shop?" Daddy says, "Yep, we'll see!"  Anise says "Yay, but Daddy, am I going to get a shot?"  Daddy says, "Yeah, probably, but you won't feel a thing, sweetie."  Hearing them have a conversation of what was going to happen brought tears to my eyes...my brave little girl. I have to remind myself that we are making the best decision for her. Anise, sweetie, someday you will understand and agree that you were a brave little girl.

Sofía on the other hand was questioning why she wouldn't be traveling with Mommy and Anise. Sofía says "Daddy, can I get a toy, too?" Daddy says, "Yeah, we'll see!" Sofía does not understand what is going on, all she cares about is the fact that Anise is getting a Pet Shop, and she isn't.  Sofía's innocence is so pure and the love that she has for Anise is immense...she is definately a mama bear to Anise.

Surgery scheduled!/ La fecha de la cirugia

We have a date!

August 17th, 2010 in Palo Alto, CA at the California Ear Institute.

Tenemos la fecha!

17 de agosto, 2010 en Palo Alto, CA en California Ear Institute.

Our Choice: Atresia Repair/ Nuestra Desición: Reparación de Atresia

After much thought and weighing the pros and cons of all of our options, we decided to proceed with only Atresia Repair for Anise. Our alternate choice would have been a combined Microtia/Atresia procedure, in which we would have the option for Anise to have a symmetrical ear relative to her left.  Since Anise's Microtia is a grade II, it is indeed visibly smaller than her left, but has the full shape of an ear and for that reason we have decided that we would not touch her outer right ear. We agreed that the most important outcome of all of our options, would be that Anise have the opportunity to hear completely. 

We have chosen this for Anise now at age 3, as it is the earliest that this surgery can be performed on a child, and the sooner we can restore part of her hearing (80%-90%), the less likelihood that it will affect her speech and development. In the future, when Anise is older, and if she chooses to reconstruct her right side outer ear, we will proceed as she wishes.

Despúes de pensar y ver los pros y contras de nuestras opciones, decídimos en solamente hacer la cirugia de Atresia. Nuestra opción alternativa fuera sido tener una operación combinada de Microtia/Atresia, en la cual Anise tendria su oreja derecha symetrica a su izquierda. Como Anise tiene 2do grado de Microtia, su oreja si aparenta ser más pequeña, pero aún tiene su forma de oreja, y es por eso que decidimos no tocar su oreja derecha. Aceptamos que los más importante sería que Anise tuviera la oportunidad de oír completamente.

Tomamos esta decisión para Anise a la edad de 3 años, simplemente porque es lo más temprano que se puede operar, y lo más pronto que ella pueda oír, hay más probabilidad que no le afectara el habla y su desarollo. En el futuro si Anise decide reconstruir el exterior de su orejo derecha, la apoyaremos completamente.

CT Scan Results/Resultados de la Exploración de CT

Anise at age 2 1/2
The results of the CT scan came in, and of course we saw them and it was like reading something in a foreign language.  The good news is that Dr. Roberson from the California Ear Institute was going to be sent the results and we were soon to find out if Anise would be a candidate for Atresia Repair.  It wasn't until two weeks later from the day of the scan, that we were to find out that Anise scored an 8 on a scale of 1-10.  Cheryl, Dr. Roberson's asst, said that he rarely scores a 10, and that an 8 was very good. She would be a perfect candidate for Atresia Repair!  Our excitement was immense, we felt so blessed that Anise would be given the opportunity to have the full ability to hear for the 1st time!  This meant so much to us! It's almost like the guilt I felt at birth was lifted on my shoulders...she would be able to hear!  She of course had no idea why mommy was so happy, but I knew that someday she would understand.

Los resultados llegaron, y por supuesto los vímos y era como se estubieramos leyendo en otro idioma.  Lo bueno fue que el Dr. Roberson iba a recibir los resultados para evaluarlos, y determinar si Anise sera candidata para la operación.  Esperamos 2 semanas hasta oír del Dr, y nos dijó que Anise podría tener la operación. La emoción fue inmensa, nos sentimos tan bendicecidos que Anise pudiera oir por primera vez. Esto significaba mucho para nosotros. Tal vez era como si el peso de sentirme culpable de que ella alla nacido así, se me quitó de encima...y Anise tendra la oportunidad de oír completamente. Por supuesto que ella no tenía idea porque mamí estaba tan contenta, pero espero que algun dia ella entienda mí felicidad.

Wednesday, August 11, 2010

CT Scan/Exploración del CT

Image of child getting CT scan
The CT scan is a big milestone, age 2 1/2, we find out what are options are in regards to Atresia Repair. In Feb 2010, we contacted Dr. Roberson from the California Ear Institute and asked him to send us the specs needed for the CT scan. He would be looking for VERY specific images in order to determine if Anise's would be a candidate for Atresia Repair.  The day of the test talked her through the procedure, explained to her that it would not hurt, and that they were going to take really cool pictures of her head. The biggest thing to consider if they would need to sedate her for the procedure. The staff at Cardon's Children Hospital were very good and helpful. Bribing her with stickers helped! The test itself takes about 5 minutes, and Anise was a trooper, she stayed still for the whole 5 min, no crying! No sedation necessary for her! So proud of her!

La exploración del CT es el momento que todos los padres esperamos a los 2 años y medio, en cuestion a nuestras opcíones de la reparación de la atresia. En febrero del 2010, contactamos al Dr. Roberson, para que nos mandara las instrucciones para el examen CT.  El esta buscando imagines especificas de la formación de la cabeza de Anise, para determinar si le pueden hacer la operación de Atresia. El día del estudio hablamos con ella acerca de lo que le iban a ser. Le explicamos que no la iban a picar o lastimar, y que simplemente le hiban a tomar fotos de su cabeza. El personal del hospital infantil de Cardon fueron maravillosos ¡Sobornándola con las calcamonias de Dora! ¡La escaneo dura 5 minutos y el Aníse se quedo quieta el tiempo completo, y no lloró! ¡Tan orgulloso de mi Anise!


Anise wearing her Softband BAHA at 6 months
For Atresia, options.

1. Have her wear a Softband BAHA (bone anchored hearing aid), it goes on a band around her head and sits on her skull, for the 1st 5 years of her life, and then have it surgically implanted---We decided that for the sake of her development she needed to be aided through a Softband BAHA, until we decided or knew what our options would be (we would have to wait...patience).

2. Atresia Repair. The only way to know if she was a candidate was to have a CT Scan, and the earliest she could have a CT Scan would be at age 2 1/2. Child needs to be big enough for the inner and middle ear to show up.

Anise-Microtia Right side-32 months


For Microtia, options.


1. MEDPOR® Ear Reconstruction: A synthetic material is used as a framework that is covered by the body's own tissue.

2. Rib Cartilage Ear Reconstruction: Uses the patient's rib cartilage to create an ear that is covered by the body's own tissue

3. Silicone Prosthetic Ear: Sculpting an artificial "plastic ear" that attaches to the body either with an adhesive glue or with a device that is surgically implanted into bone (called an osseointegrated implant)

4. Do nothing.

Finding Support/Encontrar apoyo

Thanks goodness for the internet! 1st day home from the hospital, I googled child born without ear canal, and loads of information came up! Aside from finding out the label for what she had, was finding a Yahoo Support Group with parents of children with Atresia/Microtia. It was God sent, during a time of confusion, and knowing that I was not alone in this.  I met up with someone from the group that was in the area that had already gone through this and knew the angst and guilt that I was dealing with (Thanks Stephanie!) Among this group were tons parents that shared information, experiences (good and bad) in a safe environment. As a parent with a newborn that has Microtia/Atresia, you want to find what you can do for you child in the present, and I quickly came to find out that I would have to have a lot of patience, based on the options that are available.

Another wealth of knowledge was discovering the California Ear Institute in Palo Alto, CA.  They typically have an annual conference with top notch doctors, and they present their expertise on our surgery options. In addition to that we had the ability to schedule an appointment with each of the doctors for FREE! They are amazing! 

¡Gracias a Dios por el internet! ¡El primer dia de llegar a casa con Anise busque en Google niño sin el canal de oído, y las cargas de la información subieron! Aparte de descubrir el nombre de lo que tenia, encontre un grupo de apoyo de Yahoo con los padres de niños con atresia/Microtia. Era un milagro durante los momentos de  confusión, y de saber que no estaba sola. Me reuní con alguien en el área que había pasado por esto y sabía la angustia y la culpabilidad que sentía (gracias Stephanie!). En el grupo de Yahoo, los padres compartieron montones de información, experiencias (buenas y malas), en un ambiente seguro. Como padre con un recién nacido que tenga Microtia/atresia, yo quieria encontrar lo que pudiera hacer en el presente, y vine rápidamente descubrir que tendría que tener mucha paciencia, basada en las opciones que hay disponibles.

Otra abundancia de información fue descubrír el Instituto del Oído de California(CEI) en Palo Alto, CA. Tienen típicamente un Congreso Anual con los mejores doctores/ciruganos y presentan nuestras opciones. ¡Además de eso teníamos la capacidad de programar una cita con cada uno de los doctores GRATIS!

Monday, August 9, 2010

What is Microtia/Atresia?/Qúe es Microtia/Atresia?

Microtia (meaning 'Small ear') is a congenital deformity of the outer ear. Over 90 % of the time, microtia is unilateral, meaning only one ear is affected, but it can also be bilateral, affecting both ears. Boys are affected more than girls, and in unilateral microtia, the right side is affected more than the left. Microtia occurrence in the general population is approximately one in 8,000 globally, but ranges wildly depending on ethnic group in question -- from less than one in 1000 in some indigenous groups in Mexico, the US and South America, to one in 2100 in the Japanese/Korean community, to 1 in 20,000 in the overall Caucasian community.

There are four grades of microtia:

Grade I: A slightly small ear with identifiable structures and a small but present external ear canal

Grade II: A partial or hemi-ear with a closed off or stenotic external ear canal producing a conductive hearing loss

Grade III: Absence of the external ear with a small peanut vestige structure and an absence of the external ear canal and ear drum

Grade IV: Absence of the total ear or anotia.

Grade III is most common, and can be corrected by surgery.  

Microtia on the right side-1 month old

Aural atresia refers to the absence of an external ear canal. When someone has aural atresia, there is a high incidence of malformation of the external ear and middle ear also, but the inner ear and auditory nerve are frequently normal. It is important not to forget the "normal" ear in patients who have one-sided Atresia as approximately 25% of these individuals may have a hearing loss in their best side also.

A narrowed ear canal (i.e. one where the eardrum can be viewed, but the canal is narrower than normal) is sometimes referred to as a stenotic canal, or canal stenosis.

Aural atresia most commonly effects just one ear (unilateral aural atresia), but can occur both ears (bilateral aural atresia).
Atresia is most frequently isolated, but can be a symptom of a larger syndrome, such as Treacher Collins, Goldenhar, Crouzon's, Alpert's, Pfeiffer, Klippel-Feil, BOR (Branchio-Oto-Renal) also known as Melnick-Fraser, 18-q chromosome, as well as Hemifacial Microsomia.

Microtia (significa "Pequeña oreja") es una deformidad congénita del oído externo. Más de 90% del tiempo, la microtia es unilateral, que indica que solamente un oído es afectado. También puede ser bilateral, donde afecta a ambas orejas. Los hombres son mas afectados que las Mujeres. En microtia unilateral, el lado derecho es mas afectada que el lado izquierdo. La ocurrencia de Microtia en la población general es aproximadamente uno en 8.000 globalmente, pero se extiende violentamente dependiendo del grupo étnico en pregunta. --de menos de uno en 1000 en algunos grupos indígenas en México, los E.E.U.U. y Suramérica, a uno en 2100 en la comunidad japonesa/coreana, y 1 en 20,000 en la comunidad en conjunto Caucásica.

Hay cuatro grados de microtia:

Grado I •: Un oído levemente pequeño con estructuras identificables y un canal de oído externo pequeño pero actual

Grado II •: Un oído parcial o un hemi-oído con el canal de oído externo estenótico produciendo una pérdida de oído conductor

Grado III •: Ausencia del oído externo con una pequeña estructura del vestigio y una ausencia del canal de oído externo y del tímpano

Grado IV del •: Ausencia del oído o del anotia total.

El grado III es el más común, y se puede corregir por la cirugía.

Anise Micotia (lado derecho)-32 meses

La atresia auricular se refiere a la ausencia de un canal externo del oído. Cuando alguien tiene atresia auricular hay una incidencia alta de malformación del oído externo y también del oído medio, pero el oído interno y el nervio auditivo son frecuentemente normales. Es importante no olvidarse del oído “normal” en pacientes que tienen atresia unilateral así como aproximadamente 25% de estos individuos pueden tener también una pérdida auditiva en su mejor lado.

Un canal de oído enangostado (es decir uno donde la membrana timpánica puede ser vista, pero el canal es más estrecho de lo normal) se refiere a veces como un canal estenótico, o estenosis del canal.

La atresia auricular por lo común sólo afecta uno de los oídos (atresia auricular unilateral), pero puede ocurrir en ambos oídos (atresia auricular bilateral).

Friday, August 6, 2010

Anise's story/El cuento de Anise

Happy Birthday Anise Jude Carroll-Covarrubias
As every child is a blessing, when Anise was born she was a happy and crying, like any other newborn, however a nurse in the recovery room noticed something different with Anise's ear.  We didn't think much of it, just the bliss of having a healthy baby with 10 fingers and 10 toes, right? Well upon them doing a well baby evaluation, pediatrician comes and tells my husband and I that Anise had a malformed outer ear (Microtia-doctor did not know this term), and that it would be only cosmetic and that she would be fine.  As parents we looked at each other with confusion, and without saying but knowing there were a lot of questions to be asked. Pediatrician comes back about an hour later with Anise, and let's us know that it is more than just cosmetic, and informs us that she does not have an opening in her ear (no ear canal-Atresia-doctor did not know the term). At that point I panicked, and started thinking I did everything I should have during my pregnancy, I didn't drink, I drank decaf coffee (OK, had the ocassional cup of caffinated), but all in all I had done everything right as with my 1st pregnancy with Sofía. So now instead of enjoying the fact that we had a healthy baby, my focus was on what did I do wrong, and that she didn't deserve this.

Upon leaving we were not sure what to expect.  And then all of the doctors appts came. Audiologists, Urologists, Geneticist, more doctors than I have ever seen in my lifetime, and here she was days old, and already being poked and prodded. Because the ears develop with all of the major internal organs, they needed to check heart, kidneys, and of course her ears. It did turn out that she had bi-lateral kidney reflux, in which she had to be on antibiotics (she hated the taste!) until it resolved. That resolved at the age of 2. Her ABR (Auditory Brain-stem Response) test, showed she did not have any hearing loss on her left side (her good ear, as we call it), and it was determined that the internal structure of her right side was in tact, just no ear canal. Great news!

After battling,and failing miserably with my insurance to get a Softband BAHA for Anise, we were blessed to find the AZ Ear Institute to provide us with a loaner Softband BAHA (Bone Anchored Hearing Aid). She used religiously from about 5 months to about 16 months, and then just lost interest in wearing it, didn't want any around her hear, along with the stubborness of a normal 1 year old. I believe it did help her speech development for the time she wore it.

Anise has developed graciously, her development in all aspects are where they should be. Her speech is where it should be, at times I think that she has a bionic ear, and hears more than most. She was tested early on through the AZ Early Intervention Program as part of services provided for children who are deaf or have hearing loss, and was on track at all levels. Yay!

Como cada hijo es una bendición, Anise nacío llorando y feliz, como cualquier recien nacido, con la excepciín, que la enfermera notó algo diferente con su oreja. En el momento no pensamos nada, simplemente estamos contenta de tenerla con nosotros, y que tenia 10 deditos en los pies y las manos.  El pediatra entro al siguiente dia informandonos que Anise tenia una deformidad en la oreja y que solamente sería cosmetico, horas despúes volvío el doctor para decirnos lo contrario, que Anise no tenia canal de oido.  En ese momento, sentí que el mundo se me cayo encima, pensando en mi misma, que yo habia tomado todas las precauciones necessarias durante mi embarazo, asi como mí embarazo con Sofía.  Ahora en vez de disfrutar el hecho de tener una niña saludable, mí enfoque era, que ella no merecia esto.

Al irnos del hospital, empesaron todas las citas. Audiologos, Urologos, Genetistas, y mas doctores de los que yo eh visto en toda mi existencia, y aquí Anise teniendo dias de haber nacido y ya la estan picando. Los oidos se forman al mismo tiempo que los organos mayores, como el corazon, los riñones, y por supuesto los oidos.  Lo unico que si tuvo fue  reflujo bilateral del riñón, en cual tuvo que tomar antibiotico (el sabor era pesimo) hasta que se resolviera a su tiempo.  Se le resolvio a los dos años. El ABR (Prueba auditiva de la respuesta del médula oblonga), nos índico que el ella oía perfectamente en su oido izquierdo, y fue determinado que la estructura del interior de su oido derecha estaba intacto, pero sin canal de oido. Esas fueron muy buenas noticas para nosotros!

Despues de batallar y fallar con las aseguranzas para obtener un prótesis de oído anclada hueso (BAHA) para Anise. Tuvimos la suerte o por la gracias de Dios de encontrar a AZ Ear Institute. Ellos nos prestaron uno desde los 5 meses hasta hace unos meses.  Anise lo uso religiosamente hasta los 16 meses, con el tiempo le empeso a molestar y no tenia el ínteres de usarlo.  Siento que por el tiempo que ella lo uso le ayudo muchisimo con el habla y su desarollo total.

El desarollo de Anise ha sido maravilloso, su desarrollo en todos los aspectos es donde deben estar. Su discurso igual, yo aveces pienso que tiene el oído bionic, y oye más que la mayoría. La probaron con el programa de intervención temprano de AZ como parte de los servicios proporcionados para los niños que son sordos o tienen pérdida de oído, y estaba en pista en todos los niveles. ¡Yay!

Thursday, August 5, 2010

Why Blog?/Porque blog?

Having a child born with a medical condition, as parents we want to share information with our friends and family and also with parents going through the same thing.  It takes more than words to explain, it's an experience...good and bad. So this is my attempt to provide information to my family, friends and other parents who are dealing with Microtia/Atresia.

Tener un hijo que nace con una condicion medica, como padres queremos compartir nuestra experiencia con nuestra familia, amigos y con otros padres que esten pasando por la misma situacion. Aveces no solo son palabras que necesitamos para explicar nuestra situacion sino nuestras experiencias.  Es por eso que eh decidido usar esta plataforma para compartir con ustedes nuestra experiencia.