Background

Hearing ticker

CafeMom Tickers

Friday, March 30, 2012

This week

Good morning! Everyone keeps asking how Hunter is doing and I apologize for not giving more/better updates. When we got home on Wednesday he was crawling all around, pretty much back to normal. Trying to give that child a bath Wednesday night was a task! We took out the old bath tub that he used to sit in inside of the big tub so that we didn't get his hair wet. (anytime we put him in the big tub, he immediately lays down and starts kicking, and we didn't want that!)
Then after his bath, we layed him on the bathroom floor to wash his hair. Blair served as a nice distraction to prevent him from rolling over and I semi-washed his hair with a washcloth so as not to get the tape wet. It was then that we decided he didn't need a bath EVERY night this week :)
Last night's bath time consisted of wet wipes and lotion.

Blair was a little concerned because Hunter's ears were sticking out more than normal. After googling it and talking with another mom, we came to realize that it has to do with some swelling and how they pull the ear forward during the surgery and when it's bandaged. One has gone back to normal and the other one is still a little swollen.

And as far as where they shaved his head, just from looking at him from the front you can't even tell! But looking at the back there are definitely gaps. You would think they would shave the same amount on both sides, but no... one side is shaved more than the other...? Oh well!

I haven't been able to get any really good pictures except for this one. It's his left side behind the ear. The tape is supposed to fall off by itself. But you can really tell from here that his ear is sticking out.


And here is a video from the first day home:


I love the little pointer fingers, I could kiss them all day long!
Hunter slept like a rock the first night home. We had given him Tylenol for any pain rather than the pain meds, and he seemed to be doing well with that. The next morning, there was dried blood covering his face under his nose, but I knew it was probably still going to be coming out. There was some on his sheets, but not like his nose was bleeding all night. I came back to work on Thursday since it's the height of tax season, as did Blair, and our moms are splitting half days with Hunter. A full day with him by yourself can be exhausting so we figured half days for each would work better.

Here is a video from yesterday that his Gammy took while staying with him. He's a big boy getting on the couch all by himself! That head must not be hurting!


We may try and tackle another bath tomorrow since we will be seeing other people rather than just family this weekend! Haha.

Then on Wednesday, we go to NOLA for his week post op appointment with Dr. Molony, the CI surgeon. And after that, we will go to Tulane in New Orleans to get blood drawn to do the genetic testing.

Stay tuned for further updates... I will try and get better pictures of the back of his head soon! He just doesn't stop moving :)

Wednesday, March 28, 2012

Thank you, Facebook

My opinion of Facebook and the social media world is constantly changing. I find myself subconsciously judging others on what they post, why they post things, and sometimes ask myself who in the world needs to know some of the things that get posted. As I'm sure some people judge some of my posts.
Today, I praise Facebook and the effect social media has had on our family. I don't so much get choked up when thinking of hunter's surgery, I get excited! But I do get choked up when I get on Facebook and see all of the love and prayers coming our way. It served as a nice distraction during the surgery, and it also spread the word to lift hunter through prayer and to watch over the surgeon and staff who are assisted in his surgery.
Yesterday was a great day... It was a surgery that will take hunter places we never dreamed he would go when first hearing of his profound hearing loss diagnosis.
So thank you Facebook, for keeping us connected to our support system... There were many angels surrounding our baby boy today!

Surgery Pictures


This was when we first got to the hotel room in NOLA, he's ready to party!


Waiting room area at Ochsner's


Loving on everyone!





First pic post surgery... a little swollen



Pooped with his santa in tow... yes, it's Christmas all year round at our house. He loves that thing!




The bandages were pushing his forehead down, and looked like he was making mean faces, haha


Not enjoying my baby fussing, but he was so tired when we went to get the bandages cut off.


Hunter and his Cochlear Koala friend! This is what the outer part of the CI will look like on Hunter's head when he gets them on April 27th!

Post Surgery Update

Well, almost immediately after my last post, it was almost time to give Hunter some of the pain meds. He was pretty fussy, but it hadn't been exactly 4 hours yet so I let him lay on me for a bit and he ended up falling asleep. When we decided to wake him to give him the meds, he threw up dried blood, milk and yogurt basically down my shirt and all over him, poor baby. It was just my mom and myself in the room at the time, and I almost freaked when seeing the blood, except I knew it didn't look like fresh blood. In the midst of it all when I asked my mom if it was blood, she said yes but probably dried blood which he had been swallowing and was making him nauseous. From the time we first saw him after the surgery he has had a few random nose bleeds and is still getting them even though we are now home.
I think it made him feel better, although we were not about to try giving him anything else but pedialyte and ice chips.

We were prepared for a pretty rough night, but surprisingly he didn't wake us up much, and he was sleeping between Blair and myself in our bed. We had set the alarm to give him meds, and tried pedialyte a couple of times. He ended up taking almost an entire pedialyte popsicle, but nothing more until the next morning. It was very weird for him not to move at all during the night because he is usually rolling and tossing and turning all night (he never sleeps with us at home, so I figured he would be kicking us all night). But I think the bandages were heavy on his head and he was still a little out of it all night long.

We FINALLY (well let me say, BLAIR finally) got some giggles this morning when we got up and moving around. I'm pretty sure he was sick of being stuck in the hotel room because we couldn't even sit on the bed while holding him, we had to constantly be walking around. So the whole family took turns going up and down the hall and to the bottom floor. When we went eat breakfast he was back to his normal self, except that the bandages were pushing his forehead down so he had a mean look on his face all morning, lol! But he was munching on biscuits, grits and milk, so we knew he was feeling much better!

Dr. Molony took the bandages off and said everything was looking great. We told him about the bloody nose and he said that was normal after surgery. He told us he would see us again in a week to check out how everything was healing. Before walking out of the room, my mom told him he was covered in prayers during the surgery, to which his response was "I felt it". How awesome!

We also set Hunter's activation date! For those who were wondering if he was going to be able to hear right after the surgery, the answer is no. They just put in the internal device of the cochlear implant, but there is also an outter device that is needed to make them work. This outter device is not turned on for a month or so, once everything is healed and looking good. So the day we will turn them on is Friday, April 27th! This will be the day Hunter will be able to hear what he has been missing out on for the last year of his life!

I will put another post with the pictures from the past few days!

Tuesday, March 27, 2012

Today- the big day!

Yesterday at work, I got a call from the hospital with about a zillion questions, and most importantly, an arrival time We had to be there for 6:15am and they were expecting to take him back around 7:30. Almost all ran on time, and after the prep, etc. the surgery began at 8:28am. We got an update around 9 that all was going well, and again around 10:30 that they had just started on the second ear. At 11:48, Dr. Molony came from the back to inform us that the surgery went perfect, and we would be able to see Hunter soon! Such a relief, and I think it finally hit me, I was just sooooo relieved that it was over. About 45 minutes later, Blair and I were allowed to go back and see Hunter. He was still asleep and woke up a time or two but immediately went back to sleep. After an hour or so, he woke up and took a good 8oz of pedialyte. We were then allowed to move from recovery to a day of surgery room. He was basically sleeping the entire time, and took a little more pedialyte before we were discharged. We got back to the hotel room connected to the hospital around 3 and Hunter slept until 4:15ish and woke up pretty groggy. Going into the surgery with a runny nose didn't help either. We gave him some milk and even tried yogurt but he wasn't interested. He was crying and crying, while we helplessly tried everything for what seemed like an eternity until he finally fell asleep on my mom for another 30 minutes. It's now 5:30 and he's on the bed napping. I think the night will be interesting. Thank God for our healthy baby boy, I know the recovery process will be over soon. Will post surgery pictures soon when I get to a real computer. Thank you for all of your love and support, we know Hunter was surrounded by angels today :)

Wednesday, March 21, 2012

Sunday, March 18, 2012

Updates

Yes, it's a little over a week away. The surgery is next Tuesday, March 27th at Ochsner's in New Orleans. With all that we have had going on, we haven't really had time to dwell on it. Which I guess is a good thing and a bad thing. A good thing because I'm not real nervous yet, and a bad thing because I need to make a list of what to bring :/ Which I hope to get to this week.

A lot of people are still not fully aware of what's going to happen. So here's a little breakdown:
March 27th is the surgery for the implant.
April 4th is his post op appointment to check that all is healing well.
If all is healing well, we will schedule an activation appoinment to "turn on" his ears three weeks from that first week in April. So hopefully we will have an appointment scheduled for his activation the week of April 23rd.


Something new- After our post op appointment on April 4th, we will be going to Tulane to draw blood for genetic testing. We will be testing for the most common Acadian/French heritage strand of Usher Syndrome. This test will probably take around 4 weeks to get the results.


If you can do anything over this next week, it's pray for the success of the implant surgery. Pray for the surgeon and his entire surgery team.


If you can do anything over the next 6 weeks, it's pray that Hunter does not have Usher Syndrome. Just.please.pray.with.us.
With all of my love and gratefulness-
Thank YOU,
Elise

Friday, March 16, 2012

Keeping the Faith

The following story is from the principal at St. Edward's School in New Iberia, where I went to elementary school. I hope it touches you all as much as it touched our family :)


This is the story of two journeys intertwined in the affirmation and blessings of God.  One journey is Hunter’s and the other is mine.  His journey is toward physical hearing and mine of spiritual hearing - hearing the message I was to deliver Hunter’s family upon my return from the Sisters of the Blessed Sacrament Motherhouse in Bensalem, PA.

Through a series of circumstances, Mrs. Helen Polk, and I planned a trip to the Sisters of the Blessed Sacrament Motherhouse for St. Katharine Drexel’s Feastday, March 3.  As we traveled, I carried with me hundreds of prayer intentions to lay at St. Katharine’s crypt.  Each intention is considered just as special, significant, and worthy as another, yet I knew the most specific intention I carried was for Hunter.  This is because the intention for Hunter is directly linked to St. Katharine, as while she is not considered the patron saint of hearing, both miracles approved by the Vatican for her canonization were miracles of hearing.

Ms. Polk and I had already gone to mass earlier that morning in the Motherhouse’s infirmary chapel, St. Michaels, yet I felt compelled to go again at noon in the larger chapel, St. Elizabeth’s.  At this mass, rather than the usual feastday celebration (which had to be postponed until the following weekend), the Honor Guard, those who keep watch over St. Katharine’s crypt, are being honored.

St. Elizabeth’s is part of the shrine area and I hoped that after the mass we would visit the crypt for the first time on our trip.  My purse was packed with envelopes of intentions, including Hunter’s.  Hunter’s grandmother, Suzanne, had also given me his photo and four cards printed with the same photo, as well as information about his blog, and the letters in “thank you” expressed through signing hands.  Further, when I saw the photo and counted the cards, I immediately knew my plan: the photo would be placed on St. Katharine’s tomb and the four cards were for particular Sisters of the Blessed Sacrament I’d chosen.

When we walked into St. Elizabeth’s chapel, it was completely full.  The chapel was opened in 1892, with most of the seating being “stalls” – individual spaces, each for a Sister of the Blessed Sacrament at a time when the religious order was flourishing and growing.  As we cross the threshold, we immediately meet up with Sr. Agnes McDevitt and she says, “I have no idea where you are going to find a seat.”  I quickly scan the room and spot the only two unoccupied stalls next to one another.  We make our way there to sit and I get out my St. Katharine rosary, share it with Ms. Polk, and then get out another for myself.  

As I get situated with my bulging purse and such, I look up and sitting next to Ms. Polk, I see a man I am sure I recognize.  Being admittedly starstruck, I have to keep reminding myself during mass to stop being distracted by his presence, as I know I will approach him afterwards.  I am also in awe of the fact that over the past 12 years, the only connection I have to this man is to see his photo a handful of times – the same photo, which is a profile view.  I shake his hand at the sign of peace and I cannot believe whose eyes I am looking into.  After mass, it seems like an eternity before I can say, “Excuse me – Robert?” he nods yes, a bit quizzically, and Ms. Polk is staring at me, wondering who in the world I could know here.  I turn to her and say, “This is Robert Gutherman.  The person who St. Katharine’s first confirmed miracle of hearing was performed on.”  There I was, with a profoundly deaf child’s intention in my heart and in my purse, standing face-to-face with the man who received St. Katharine’s first miracle of hearing.

As we talk, I explain the very specific intention for Hunter and ask him if he will pray for this beautiful child. Of course, he agrees, and while we converse further, I battle with the thought of giving him one of the four cards.  That would mean I’d have to choose which Sister would not receive a card.  Could I maybe copy one?  I surely could just get another and send it when I return home.  But in my humanness, I simply want another card because my plan is going to be interrupted.  I am incredibly grateful to give one to Robert, but a little disappointed I will leave with one Sister not having what I know I was meant to bring her.   When I open my wallet to give him one, I half think that maybe I’ll see five… but I don’t.

Robert was sure to ask if Hunter has a relic of St. Katharine and I tell him that he does.  I find it meaningful that Robert also mentions no one really ever recognizes him, something he’s and other “miracle” recipients have discussed is fairly humorous.  They walk through malls, attend events, go to the movies, etc. and people are none-the-wiser.  It takes me aback when he says he wouldn’t normally be at the Motherhouse for this particular celebration – he’s only there because during the big feastday celebration he will be on retreat. 

After mass, a meal had been organized and we eat in the wide hallways and the gathering areas outside of the gift shop.  I begin talking to a Sister of the Blessed Sacrament and share the Hunter/Robert story.  She marvels and says that’s my experience to take home.  I expressed that we still have about 24 hours at the Motherhouse before leaving, so there’s time for more!  We laugh and agree, “Who knows?”

Later when we visit crypt, I lay Hunter’s photo on the end of it where St. Katharine’s head lies.  It is among a display of a relic and a prayer cloth.  The honor guards keeping watch over the crypt are Sr. Anne Doyle, SBS and a husband and wife team.  Among the 60 or so honor guardsmen who were at the St. Elizabeth’s mass, this couple are two of the very few we personally met at the gathering afterwards.

After kneeling in prayer for some time, I walk over to Sr. Anne Doyle and ask her to pray for Hunter.  She asks me write his name in her prayer book, along with why she is to pray for him.  I then walk back and get his photo to show her.  She is overcome by how beautiful he is.  I also share the photo with couple and ask them to pray for Hunter.  The husband asks if I can stay at the crypt for a while – he has something he needs to get and send to Hunter.  He returns with Padre Pio blessed oil.

That afternoon, Ms. Polk and I recount the story about Robert, the couple, the oil, and more.  Between us, we’ve been to the Motherhouse 15 times, with beautiful, spiritual and holy experiences happening, yet neither can remember something like this ever happening.  Later that evening, I give Hunter’s second card to Sr. Michelle Callanan and explain why prayers are needed. 

The following morning, we are enjoying breakfast with Sr. Agnes McDevitt and the opportunity to give her the third card I have presents itself.  She takes the card and says, “Now where do you get these made?  There must be a source for hearing impaired people because I have a card that looks just like this.  We got a few from a person in a Methodist prayer group but I’m not sure where mine is.”

We agree how nice it is that there are cards like this for people with hearing afflictions and continue our conversation.  Later that afternoon, as we are saying our goodbyes, we are with Sr. Ruth Catherine Spain and I give her the fourth and final card I have.  I make a mental note to ensure that when I return home to get another card from Suzanne to send to Sr. Mary O’Riordan.  She is the fourth Sister to whom I’d intended to give a card.  Further, since beginning to give out the cards, I had not even run into her, so even if I’d had a fifth one, I wouldn’t have had the chance.

We return home at nearly 10 p.m. Sunday evening.  I email Sr. Agnes to let her know we made it safely.  I know that Monday will be a tiring and hectic day back at school, but I am energized thinking about meeting with Suzanne to share the story.  I email her Monday morning and ask about when she has time to meet.  She replies that she can come after lunch.  Before Suzanne arrives, I receive a reply from Sr. Agnes.  Among other things she emails about is this, “I also found the card with Hunter's picture on it.  Don't ask how it got all the way up here before you.  I think it is a sign.”  It takes me a moment to process… the card she found is the one she said looked just like the one I gave her… because IT WAS the one I gave her!  I realize there is no source for “stock” cards like this – Hunter’s cards were made uniquely for him.

The message I know I am to deliver is clear and one that is overwhelming.  How do I tell a grandmother that I know her grandson will hear well?  Hear with his ears?  Hear with his heart?  Hear through the actions of others?

How do I, with conviction, reassure her he will be okay? All I have to lean on is my story and the faith that whatever I say will be the right thing.   Sometimes connections can be made through stretching and yearning to see them, which is just fine.  Other times they cannot be denied or explained.  They are specific – just like I always considered Hunter’s intention.

And there are more connections.  Like the fact that Elise was one of three students at St. Edward, chosen from 70-80 children when she was in 3rd grade, to receive the school’s highest honor, the St. Katharine Drexel Award.  And the Padre Pio blessed oil… a perfect fit for a tiny, beautiful bag Suzanne received as a Christmas gift – a bag that she’d been waiting to use for something special in regards to Hunter.  The list could go on.

Whatever you take from this story, it is hoped to have strengthened your faith and also affirmed that St. Katharine is interceding for Hunter.  I believe that God is drawing people closer to Him and to one another through Hunter.  Let us continue to “storm heaven” for his health, for the success of his coming surgery, and in thanksgiving for this precious child who has already profoundly touched the lives of so many.

Sunday, March 11, 2012

Hunter's 1st Birthday Party

Yesterday we celebrated Hunter’s 1st birthday party. I made myself crazy because I wanted everything to be perfect. I guess it’s that first child 1st birthday party itch. I was determined to have it exactly as I had always pictured it, and nothing less! My family knows how crazy I am about this kind of stuff, and that I have been working on d├ęcor since January. Only because I knew once March rolled around that I would be too mentally and physically exhausted from working long tax season hours to even have the urge to make all of the decorations.

I came into work super early yesterday so that I could get out early and finish the last minute details. Thanks to some special family members who helped me, I could not have done it without them (or at least not sanely!)

On a side note…. This past week, we gave our cat, Reese, away to a sweet little couple who live near Lafayette. And I have to say it was PERFECT timing for the stuff I had to put out and the number of people who were coming over. I didn’t have to stress over her tearing anything down beforehand, and we didn’t have to pick up every.single.little.thing before going to be in fear of it being terrorized this morning. It’s bittersweet since we raised her from 4 weeks old, but I find comfort in knowing she is with a sweet family.

The theme of the party was goldfish. I found the idea on a blog, and immediately decided that was what we were going to do. See pictures below my post.

Hunter had a nice long 2.5 hour nap right before the party started… in fact I had to wake him up for fear that he would not go down for the night. He was in good spirits, but still was not a huge fan of the icing being all over his hands. On the other hand, the spoon full of icing was delightful!



Although the chances of rain were high, we did not see one bit of it! The day turned out quite nice, and we couldn’t have asked for more than to be surrounded by the people we love the most. The people in our lives who play such special and different roles to Blair, myself and to Hunter.
As I have said before, since Hunter was born, our lives have done a 180 degree turn. And the differences that stick out the most, are the increased number of times a day that I smile. From the time Hunter throws his morning bottle to the side of him, rolls over and gives me that grin where his bottom two teeth stick out, to our nighttime bath and book ritual. I never thought such a tiny person would bring so much joy to my life. There are multiple times where Blair will call to me, come see, quick! And it’s something new/different/funny that Hunter is doing. And we just chuckle. On the way home from New Iberia this afternoon, Hunter was giggling so much, and I usually do a silly giggle back to keep him rolling, but this time he just made me laugh uncontrollably and I started to tear up. The joy I get from this kid is the light of my life. He’s the reason I do everything that I do.

Tomorrow we have our 12 month checkup and shots at 8:10am. We have been trying to keep our little man healthy so that he can get his shots, since the surgery has to be at least two weeks after the shots. As of now, all is a go!

So Happy Birthday Hunter! Mommy and Daddy love you to the moon and back. Next milestone… hearing us say ‘I Love You’!












And here is a little footage, enjoy!