Thursday, October 11, 2012

This week's videos

Some little videos just for fun:

First day of school for Ryan.  Bryce is such a super big brother.  (Ignore the mommy voice...)



Bryce and Ryan have their pumpkin shirts on from grammy Krenz.  Teachers at school got a kick out of their matching shirts!


Bryce received this outfit from Uncle Dan.  It's hard to see, but he has monkeys on his shirt.

Wednesday, October 10, 2012

Ryan's First Day of Daycare

Well people, the time has arrived.  Ryan had her first day of daycare on Monday, which means she is getting older and older by the second, and more importantly means that I have to get myself back into a routine for work. I start next Monday the 15th, and I (rightfully so) gave myself a break this week by having two kids in daycare.  Between going to the gym, taking naps, and talking on the phone the day passes so quickly.  Oh sigh.

I will say I'm super excited to go back to work for the following reasons:

  • I won't get on Sean's last nerve and he won't get on mine.  Sean works from home when he's not traveling, and this 'extra' time together is getting to be a little to 'extra-ish'.  :)
  • Intellectual stimulation.  I crave intelligent conversations, the hectic days of work, and all the chaos that goes with being in the office with work colleagues. I really enjoy my job and my team, and I can't wait to be back in the craziness of pharma marketing.
  • The Hoda and Kathie Lee show is getting a little old.  Don't get me wrong, I love them, but after awhile it's all the same thing.
  • The new Katie Couric show isn't all that fantastic either.  Thank goodness I TiVo it so I can forward through all the boring guests.
  • To get my mind off of all things related to Ryan's hearing.  It's good for me not to dwell, and with extra time on my hands this is easy to do
Although I'm excited, I know that a work schedule also means a hyper-focused 'mom' at home.  Everything (and everyone) will be on a strict eating/waking/getting dressed/getting baths/going to bed-- type of schedule.  Without this structure I know I'll go insane.  So think of us next week on Monday, because the next chapter in our lives begin:  Reality in the Reedy Household with two kids.  Exciting times!

Big brother smiling with baby sister in front of 'school'! 



Bryce was excited to help escort Ryan inside!



Ryan in her classroom!

In her crib! 


Tuesday, October 9, 2012

Back at Nemours

Sean and I are back at the Nemours children's hospital in Wilmington, DE today to meet with a person from Ryan's treatment team. As we sit in the lobby, it's hard to not feel so grateful for the health of our children....In the words of Forest Gump, 'that's all I'll say about that.'


Today was another step forward in Ryan's treatment plan. We met with the person that pretty much plays the role of Patient Navigator and Patient Consultant. (My terms, not her's) She was extremely helpful in explaining the treatment process for Ryan.

Her Cochlear Implant (CI) treatment team includes two Otologists (i.e. Surgeons), the Cochlear Implant Coordinator, three audiologists, a researcher, two speech therapists,  and a  social worker.

Her panel of tests for CI candidacy are as follows (deep breadth):

  • Unsedated ABR (2 of them)
  • Hearing Aid fitting & subsequent evaluations
  • CT Scan 
  • MRI Scan
  • Sedated ABR
  • Speech / Language Eval-- threshold
  • Genetics Consult
  • Opthalmology - Vision Screen
  • Pre-CI Therapy-- speech perception test battery
  • CI surgery
  • CI Initial Stimulation
  • Ongoing Speech / Language Therapy-- two 1-hour appts each week
So, with our 'Patient Navigator' help, she'll set up all the appointments for Ryan.  She set a target date of 9-months for Ryan to have CI, assuming that (1) hearing aids provide no real hearing for her and (2) her auditory nerve is anatomically correct.

To say the least Sean and I were a bit overwhelmed, but at the same time so thankful to have some kind of plan for her.  The target date for CIs is 9-months, which would be the beginning of May.  After the surgery, there is a 3-week window before she receives initial stimulation, so I'm guessing she'll be able to hear around the beginning of June of 2013 (yay!)  Then begins the true test-- learning of language.

Language is a whole other subject for another time.  In the meantime, Sean and I are moving on from grieving to fixing.  We are looking forward to all the steps in the right direction for our baby girl.


Sunday, October 7, 2012

More on Ryan's Hearing Loss

This week, the week of October 7th (Happy 30th to my brother Dan), we are on a new journey into the world of infant hearing loss.  This week we have two appointments in the 'team for Ryan' treatment plan.  
We are meeting first with someone from her audiology treatment team who has been working with infants and kids with hearing loss for a number of years.  She'll be guiding us through what to expect as Ryan starts begins a series of more hearing tests, gets molds for hearing aids (which will most likely not be beneficial except to provide familiarity with having something on her ears), and is visited frequently by Early Interventionists for further evaluation and determination of her speech/language development.  Amanda, the person we are seeing, will be counseling us on the services we need to be seeking for Ryan as well as the questions we should be asking the audiologists, the ENT, the geneticist, and the Early Intervention people. 
Also this week, Ryan will receive an evaluation for Early Intervention in PA.  Since she has bilateral profound hearing loss she automatically qualifies for this state funded program.  The person will be doing a baseline evaluation and she'll then build a 'family plan', per se, for Ryan as we begin to understand how to best communicate with her during this time and during her development.  If Ryan is a candidate for cochlear implants (fingers crossed), most likely she'll be able to catch up quickly to per peers in regard to speech and language development.  This determination, however, will not come for several more months after a MRI is completed.  She is not able to do the MRI until she is big/old enough to handle general anesthesia.  
Sean and I are looking forward in anticipation to get to 'normal'.  We keep watching all these 'success stories' of infants diagnosed with profound hearing loss that now have 'ears' (i.e. cochlear implants) and are just as normal as their peers.  Although we have a long and emotional road ahead, we are certainly hopeful and praying for a successful outcome as all these other kiddos.

In the meantime, some fun facts that we know about infant hearing loss today:
  • Hearing loss is the most common birth defect in newborns.
  • The majority of children with hearing losses are born to parents who have normal hearing.
  • In the United States, 33 babies are born every day with a hearing loss.
  • There are many different types and degrees of hearing loss.
  • Children as young as one month of age can be fitted with hearing aids.
  • Most children with hearing losses have no other disability.
  • When a child’s hearing loss is diagnosed and treated early, he or she can develop language skills like a child without a hearing loss.

Still Catching Up

People keep asking us if/when we are having more kids.  I love telling them that we have such great babies and there is no way we are having any more.  I tell you wise/older parents, I do not know how you do/did it.  I mean, this is not easy; not at all.  I do not know how you keep your sanity.  I would not trade this for the world...well, on second thought...

My ranting comes as a result of a seriously terrible two year old.  Every thing is a fight.  Examples from this morning:

- Bryce, cars go on the ground not the furniture
- Bryce, please do not pick your nose
- Bryce, please do not pee on the floor when daddy puts you down without a diaper for 2 seconds
- Bryce, let's take a bath.  Oh, you hate your bath nowadays?
- Bryce, let's get out of the bath tub...so, now you don't want to get out?  (ugh.)
- Bryce, let's take a nap.  Oh, you want to sit on the potty for 10 minutes to avoid your bed?
- Bryce, please don't feed Rudy your food
- Bryce, please do not eat Rudy's food.  (Yes, he still does this...)
- Bryce, please do not swing your golf club at the TV
- Bryce, please do not throw your basketball at the TV...ugh
- Bryce, please do not stand next to the TV stand when you sneeze (twice today he's hit his head doing this)
- Bryce, please do not scream in mommy's ear or in daddy's ear or in baby Ryan's ear

And the list goes on and on and on.  He rarely comes home from daycare without an 'incident report' where he has either gotten bitten, didn't use his 'walking feet' and fell, or has not allowed other kids to share either his books or cars.

On the other hand, we have beautiful kiddos, and at least they love each other...thus far!

Saturday, October 6, 2012

More fun photos

Ryan's Baptism:  September 9, 2012




Super Diva

Two Months Pic



Brotherly Love


Such a sweetie



A New Adventure into Hearing Loss


September 17th,2012

Ryan, todaywe received an official diagnosis of ‘Profound Hearing Loss’ for you.  You failed four tests prior to today’smore sophisticated tests, which determined the degree of hearing loss you mayhave.  Unfortunately, at alldecibals and at each frequency tested, you do not have any hearing….atall.  The audiologist said that youmay (at best) be able to hear an airplane, but only when pretty much standingnext to it.

Today is ahard day for mom and dad.  Althoughwe know we will begin the process of pursuing cochlear implants for you, it’shard not to feel sorry for you, and (quite honestly) ourselves.  We can only hope that you will stillgrow up with no speech or language issues—so much so that no one can even tellyou are deaf. 

To give youmore details, on your birthday your did not pass the standard newborn hearingtest, otherwise known as an AABR. The nurses repeated the tests on August 2nd, and then againon August 16th.  You didnot pass those either, so your pediatrician, Dr. Ruth Mooreville from WaynePediatrics referred you to the Nuemors team of audiologists.  They also repeated the ABR test onAugust 23rd—you didn’t pass. This team did however determine that your eardrum was fully functionaland that there was no inner ear fluid. At this point your dad and I hoped that even though you failed thesefour tests, that you would still have some level of hearing.

During thenext couple of weeks before your next appointment, we tried to watch you asmuch as possible to see if you ever startled to loud or unexpected noises orwhether you responded to our voices. Although dad held our hope, I really didn’t think you could hearme.  You never awoke to Bryce’syelling/screaming/whining, nor did you turn your head when I dropped a loudplate to the tile ground…not even a blink.

So, at yournext appointment today you had an ‘unsedated ABR’ which is anelectrophysiologic measurement that reflect the auditory function from theeighth nerve through the auditory brainstem. This form of ABR testing allowsthe audiologist to determine not only the severity of the hearing loss but alsothe nature of the hearing loss (ie, sensorineural, conductive, or neural) byusing both air and bone conduction stimulation.  You also had an Otoacousticemissions test.  OAEs areused to assess cochlear integrity and are physiologic measurements of theresponse of the outer hair cells to acoustic stimuli. They serve as a fastobjective screening test for normal preneural cochlear function.  Both of which you failed.

On Thursdayyou will have your first appointment with the ENT.  We are looking forward to the next steps!




The First Two Months-- Overview

Ryan,
You are a second child.  And unfortunately, your mom has gotten lazy at keeping a blog or journal or diary for you.  But, I promise I will get better.  For now, some pics!







Ryan's Birthday! August 1st, 2012


Happy Birthday Ryan!  Today is your day, and I want to walk you through your birth story.

Wednesday morning, August 1st, at approximately 12AM I woke up to an unexpected gush—my water broke.  I woke dad up and called the doctor.  We took our time, and were not in panic (as you may see in all the movies) because my contractions really hadn’t started to get intense yet.

The on-call doctor told me that I needed to go ahead and come in to the hospital, just to keep me monitored.  So dad and I finished packing our bags, and Bryce stayed with grammy while we went to the hospital.

We arrived about 1am, where all the nurses got me checked in and set up in bed.  I chose not to have an epidural at this point because I was only 4 cm dilated and my contractions were manageable.  The nurses told us to get comfortable and sleep until morning if at all possible, but they would keep me hooked up to the machine to monitor your heartbeat and the frequency and intensity of my contractions.  Sleeping proved to be a challenge as we were both pretty wound up from the excitement of seeing you soon!  So, we did what we do best—we turned on the TV, and were entertained most of the night by watching the Summer Olympics, which had just started 3 days prior. 

By 3am, dad was able to get about 3 hours of sleep, while I stayed awake and worked through my contractions with you as many were pretty intense, but thankfully they were only coming every 10 -12 minutes.

By 6:30am, the night nurse came back in and recommended that I take a shower and get up for a bit before the doc and day nurses came to start pitocin and provide an epidural.  So after the shower, my contractions were definitely increasing in intensity and frequency, and thank goodness the day nurse came when she did as she was able to get the anestiologist to provide me with a much needed epidural and pain relief by 8am. 

The epidural is a weird feeling—it’s kind of a dull pain and it’s necessary to be hunched over so that the physician can find the exact right spot in your back.  This is hard to do because (1) my belly is huge at this point and (2) you have to sit like that through contractions and that’s a tough feet.  Dad was really into this and loves watching this procedure, as he did with Bryce too, so much so that the physician had to tell him to sit down!  They didn’t want him to faint, so he had to sit.

After the epidural, I was feeling much better—evident by how chatty I was for the rest of the morning and day.  I could still feel the intensity of the contractions, but the pain relief was fantastic.  I could still move my legs (Bryce I couldn’t move anything below my waist), but was nearly totally pain free.

Around 10:45am, I really hadn’t progressed past a 6cm, and at this point when the nurse checked to see how dilated I was she realized that my water had not completely broken.  The nurse had previously said that I would have you by 3pm, but little did we know that when the physician broke the rest of my water I would be ready to start pushing by noon.

So I was fully dilated to 10cm by noon and around 12:15pm, I started pushing with you.  It was no big deal.  I would push real hard, and then rest.  This was just  completely different experience than Bryce.  By about 12:35, the nurse ran to get the physician as you were right on the verge of coming out.  The next contraction, your head came out, and the doc had to cut the cord that was loosely wrapped around your neck (which blood went flying, almost on to daddy).  The following push you came all the way out.  It was really kind of neat because I could see everything in the reflection of the physcian’s glasses.  I saw the whole thing and can just remember you coming out. 

When you came out, you were pretty quite, eyes closed, but just whiney.  You had this little whiney sound about you, and you never really cried.  I don’t think we ever heard your real lungs until well after we arrived home from the hospital.  You came out a lot bigger than I thought you would too--  6lbs, 9oz.; 19.25 inches.  You were so perfect!






Catching Up

Wow, it's been over a year since I've posted anything, and I'm thinking, that in an effort to remember certain moments, it's a good idea to start posting again. (I think.)

Anyhow, baby Bryce is now 17 months, and among other things, he is our little angel. Here are just a few things he has been up to over the last several months:
  • Sledding for the first time in Colorado for Christmas 2011-- so much fun
  • Loving loving loving bed time (who knew) He loves to give mom and dad a kiss and go up the stairs himself to his room to put himself to bed. Of course, we put him in his crib and all, but sleeping is his thing
  • Speaking of sleeping he usually goes to bed around 7:30 and now wakes up around 6:30ish
  • He loves books. He can't get enough of them, he wants to read all the time (and we feel a little bit of guilt because this is all he wants to do)
  • When he's not reading he's practicing his soccer, basketball, and baseball skills
  • Speaking-- he's got a good solid vocabulary for a 17-month old boy. His latest words are 'mine', 'no', and 'bye' (with an accompanying blow me a kiss
Of course I can list everything, but at least it's a start. Most exciting, he'll be expecting a baby brother on or around August 6th. It's very exciting times in the Reedy household.