Patrick's Cochlear Implant Surgery

This was sure a stressful past week. Bryan called on August 3rd to find out where our insurance stood in terms of approving Patrick's pre-authorization for the CI surgery. It was still pending, and I was very nervous because we had received a letter from the insurance that as it stands, it would be denied since it was not a medical necessity in their terms. They needed more information, so Bryan made a few phone calls to get that to happen. They told us that they would contact us on Tuesday. Tuesday came along, and Bryan had to call them. The insurance said they got the information they needed, but still had to review it. If they didn't call back by Thursday, then we needed to call them and they would expedite it. Thursday came along, and we hadn't heard from them. Bryan called insurance in the morning, and they said they would have an answer by 9 PM EST. Talk about last minute, we were scheduled to be at the hospital at 5:30 Friday! Fortunately Bryan called the hospital and insurance around 5:00, and it had been approved. There was a huge sigh of relief when that happened!
Now we just had to scramble to find someone to watch KB, and let him stay the night, find a hotel room, eat dinner, pack and go. Fortunately we had some very kind church members help us out with KB, and allowed him to stay at their place. We stayed in a hotel close by because I did not want to have to deal with an hour and a half drive at 3 AM, with a hungry/tired baby as I couldn't feed him after midnight.
Patrick handled the no eating after midnight quite well, and was his happy self until about 10 minuets before they took him back for the surgery when he started getting over tired and grumpy. We were very fortunate.
We were taken to the pre-op room where they took his vitals, had the surgeon talk to his, the nurse talk to us, the OR nurse talk to us and the anesthesiologist talk to us. Changed him, and had Bryan go back with Patrick (only one parent can go in the room with the patient). We chose Bryan as I knew I would probably cry as soon as they did the anesthesia on him, I almost cried at the tear duct probe surgery, and this was a much bigger surgery.

In the waiting room before going back to pre-op

Just about to leave to go the operating room. They had to use a shoe cover for a hat for Patrick . Everyone thought it was cute/hilarious

We then went out to the waiting room by the post-op care...and waited. They had a tv screen that showed when the surgery had started, and when it was over. They gave you a number, and you could see when it was done.

Patrick's was by far the longest surgery out of everyone there, he's the one in the middle.

Bryan was very tired, but there was no place to sleep, so he went to the car and took a nap there. I stayed in the waiting room and watched synchronized swimming. A lot of hospital workers went back and forth in between in front of me, and every time someone would comment on how crazy synchronized swimming is. I have to agree.
The surgery was supposed to take 5-6 hours, it ended up only taking 4! In fact, Bryan had woken up, we decided to get some lunch before they would be done as we had expected them to take another hour. They called us back just as soon as we got in line for food.
We went to post-op and saw Patrick fast asleep.

They had an humidifier in front of him to help him breathe, as his throat would be a little swollen from having a tube down his throat during the surgery. 

I think we were in the post-op room for only an hour instead of the anticipated 2 hours. Patrick really was a champ and did great. The surgeon said the anatomy of his head/ears was just perfect and made it easy, and there was a full insertion. There were no problems. That was huge relief. Patrick had taken to one nurse, when he woke up he kept waving and smiling for her! He would not wave at anyone else but her, it was very cute. While I fed him, and we waited to be cleared to take him home, we heard another kid come into the recovery room. He had to be put under for the doctors to retrieve a popcorn kernel from his ear. Apparently he was trying to do a magic trick to make it disappear....into his ear? The things kids do!

We were given instructions for post-op care, cleared to go and we left on our way home! It took a very long time to get home as there were two accidents on the freeway that severely backed up traffic. Once we got past that, it was easy driving.

I was worried about his big head fitting in his car seat. Turned out okay, he just did not look comfortable. 

Bryan went and got Kiernan from our friends. Kiernan didn't do too well sleeping at someone else's house, which is understandable as he's never had to before where it wasn't a relatives AND we weren't there. He was so tired he fell asleep in the car on the way home. We put him to bed for an hour, woke him up, and then he went back to bed. It was very sad because he did wake up in the middle of the night while I was putting Patrick back to sleep, and cried out for us and said he wanted us to be home.

Patrick was very excited to see Kiernan when he did get home, despite his tired/grumpiness. Patrick really did do quite well over all. He wasn't happy, but he wasn't grumpy either. He was just....there. The next day he was back to his noisy, crawling, standing self. He wasn't able to roll from his back to his stomach to get up to crawl because of the bandages on his head, but other than that, no problems. He was just more tired more often. I don't think we could've asked for a better recovery.

Our cat seemed to sense Patrick wasn't himself, and was following him around like a dog.

Being his happy self the next day.

We were able to take the bandages off on Sunday, cleaned the incisions, and Patrick showed a major improvement in going back to being himself. He definitely did not want that bandage on anymore. The incisions were still there, no bleeding, no discharge to worry about. Everything's been going great so far. His head is still VERY swollen, in fact I think he looks a little like Frankenstein from Young Frankenstein. He has some bruises on his face from the facial nerve monitor. Other than that, things look awesome.

Swollen head, some sores from the bandage being so tight on his head, and ears stick out. This is all normal after surgery. Though you can see his pretty much back to normal, eating just fine, pointing, talking etc. 

We have his post op appointment with the surgeon on the 23rd, then his first activation date is September 14th, two days before his birthday. We're excited and can't wait.

July

July was a little busy.
First we went to the Capitol building for the Fourth of July. It was awesome! The only real downer was the heat and humidity. DC was having some record setting heat, and the humidity was just awful. I was glad we brought along several water bottles, the two boys drank most of them.

Patrick had his tear duct probe surgery this month as well. We looked forward to this appointment for a long time. His right tear duct was blocked, so it wasn't draining the tears and all that gunk that ends up in your eyes. The gunk was just sitting on top of his lid, gathering. We would have to wipe his eye clean every time he woke up, and plus a few other times throughout the day. He was a champ for the surgery, and it was only 15 minutes long. 

There's a spray ground not too far from where we live. It's free!

It took Patrick quite some time to warm up to it, but he will now sit down and touch the water.

Patrick has started waving hello to everyone now

Kiernan has been making some great strides with cueing

The boys being boys

We went to Virginia Beach for a few days in the middle of the month. It was a much needed break for us, and Kiernan was fearless with the water. Patrick was a little more brave this time than when we went to chiconteague. We got to see a pod of dolphins going by, all just from sitting on the beach! One thing we have learned is that the beach is now a lot more exhausting with kids as they are constantly wanting us to help them jump waves. :)

Our house was attacked with illnesses again this month. This time it was Hand Foot Mouth disease. The two boys had the fever, cough, and then some blisters show up. Bryan also got it, and had maybe 6 blisters himself, if that. I also got it, and I'm pretty sure I made up for their lack of blisters. My entire palm on both hands were covered in blisters, as well as the soles of my feet. My mouth just had a couple of blisters, but I did get some on my nostrils and my ears as well. It took a week before the blisters started going away. All I can say is I'm so grateful it happened when I wasn't working, because I would've had to take off two, maybe three weeks between all of us having this horrible virus. 

Bryan's Aunt San passed away this month from a single car accident. This was shocking, especially as she had just beaten cancer. I had a chance to meet her earlier this year, and she was a fun and wonderful person to talk with. Unfortunately we were not able to go to the funeral as it was in California, and we just couldn't make it out in time. Our thoughts and prayers continue to be with the King family. 

My grandfather passed away on the 30th of July. He was expected to die a long time ago, and it has mostly just been a waiting game for him to be ready to leave this existence. It wasn't a surprise, but it sure still wasn't easy. Up until his death, all of my grandparents were alive, and it's the first relative that I've had pass away where I was close to him. The only other ones I know of that happened in my life time are my great grandparents. Unfortunately, I was not able to fly home to attend the funeral. This was difficult to accept, but it was just the way it was. The funeral was held in August, and my siblings were kind enough to take some pictures and send them to me. My father also made a DVD of pictures of Grandpa, and sent me an actual copy of the program. I'll miss my grandpa, but I'm happy to know he's in a better place. My heart hurts more for my grandmother than anything else, as she has dedicated her life to him these past few years as he continued to get worse health wise. Our prayers also continue to be with her.

June

Kiernan had try outs to be a peer model for the Cued Speech preschool at the school that I work. It went well, and he'll be able to go there next year. I'm really excited, as we all need to work on our cued Speech a bit.

My summer vacation started this month, and I can't explain how excited I've been. I've been waiting for a break and have a chance to hang out with our two boys all the time. It will be different, but I look forward to it. We don't have much planned for the summer as Bryan still has to work full time. We are just  waiting for Patrick's tentative Cochlear Implant which is scheduled in August. We did have an appointment with a psychologist for Patrick, which was the last required appointment we had for him before officially approving him as a candidate for cochlear implants. The appointment itself went well, it was basically just to make sure he was developing normally over all, physically, socially and emotionally. There is obvious delays in listening skills and speech skills. He has yet to babble with consonants, but he does love talking. He does have some language skills, he uses a specific sound to call for someone where he says "aaah" and then makes a noise as he breathes in. He will look at the cat when we cue kitty, and lok at Bryan when we cue papai. He is beginning to know the difference between some animal sounds as they are cued and said to him. I'm excited to see him continue to develop.

Kiernan got a hold of my phone and was having fun with it.

He decided to get every single stuffed animal and sleep with them all.

This little is guy is now crawling everywhere.

We went to the Chiconteague Beach, which was beautiful!

This was at the DC temple grounds on father's day

He now pull himself to stand and lets go all the time. 

Just a really cute picture. 

Kiernan is always trying to "help" Patrick.

Playing So Big

May

This month was pretty uneventful. I should mention that over the past few months we've had several appointments at Johns Hopkins Hospital to continue with the cochlear implant candidacy. We decided to go this route as we could see Patrick was not benefiting from his hearing aids enough to be able to develop the speech and listening skills that we would like him to have. We do expect him to use Cued Speech, as we have been cueing to him (in English AND Brazilian Portuguese). I would also love from him to learn ASL once he has a solid foundation of English, especially since we're already doing Brazilian Portuguese with him as well, adding a third language will be a bit much.

So far, he is a candidate for cochlear implants. His aided hearing test showed responses in the moderately severe to profound range. that's with hearing aids on, which supports what we've been seeing in the home. He does not respond to /s/ or /e/ sounds. He does respond to Ah (as in hot), and Sh quite well. Not as consistent with /m/ and /oo/ (as in moo). Patrick also had to have appointments with an auditory verbal therapist and a speech therapist. They found the same thing, but also agree that he developing normally otherwise. Everyone always comments on how happy he is, which is true. We've been very blessed.

Bryan finished his second semester at Georgetown this month. This means we get to have him home in the evenings again until the end of August. I'm so excited! This also means he only has ONE more year left. I can't believe how quickly time has flown by for us.

We had a chance to check out a convention where they had some free (and AWESOME) face painting.

KB kept telling us that he was a GOOD monster.

He LOVES balloons.

Riding a car together.

KB had control of my phone at this point and recorded himself being a good monster :)

There's a place called Rita's that Kiernan loves. I always have to give him a bath afterwards though. I'm sure you can see why from this photo :)

The boys playing with the bath toys

Patrick was excited to get in the toy box to play

Best smile in the world. 

Having fun with my sunglasses, I love the brief cross eyed moment. 

We have a picture of KB in this exact same outfit, same position sleeping on our bed (blue sheets though), at the same age (to the day). It's been fun to compare the two to see just how different they really are. 

April

The beginning of April was spring break. I was able to get some much needed spring cleaning done. We also had friends that were in town. They stayed with Jenny and Chance for the most part as Bryan was still having to do work and some classes. Unfortunately, the president of Brazil decided to visit that Easter weekend, so Bryan ended up doing a lot of overtime work, even working on Saturday and Sunday. We still enjoyed seeing our friends and their cute boys!

I was trying to let everyone sleep in, or go back to sleep to get some much needed rest. I put on Toy Story, and the boys watched the movie on KB's bed. 

I love this picture, they were having a blast dressing up as Buzz and Woody

Bubble time

On Easter, we had a little egg hunt in the morning. I made Eggs Goldenrod, which is a tradition from my side of the family. Then we went to church. Afterwards we went to the National Mall to do some sightseeing, and let the boys run around for a bit. It was a fun day. We were sad to see our friends go, especially Kiernan as he enjoyed having someone his age around again.

Kiernan had a chance to practice Easter Egg hunting before our friends came.

Kiernan had a dentist appointment this month, and had no cavities! That was a relief. 

This month was also a fun month with illnesses again, this time with roseola. I really hope we get these viruses out of the way soon, because I just cannot take that much more time off of work. 

And just some more pics of the boys

Kiernan was trying to convince me that Bryan's socks were his :)

A makeshift drink holder, we forgot his cupholder for his car seat at home. so he decided to take his shoe off and use that instead....

I forget how flexible babies can be. 

A great picture of PK smiling. He has that hat on to keep him from grabbing his hearing aids and losing them. 

Also a great picture of KB smiling.

Patrick can now sit up all by himself!

I cannot tell you how many days I had this month where I felt like this.

Our nanny sent this to us. Apparently during nap time, KB got into her make up drawer and decided to have fun. Silly kid. She thought it was hilarious :)

A hilarious game of peek a boo :)

March

March was busy with illnesses going back and forth, all viral infections of some sort. I can tell we've moved to a different area, as we keep getting sick and passing it to each other. We no longer have an immunity built up to the local strains of viruses like we did in Utah.
Kiernan got a chance to go to Chuck E. cheese again. he LOVES that place, and asks to go all the time. I have told him that we only go there for birthdays. Big mistake. He now asks all the time if it's November yet :) We did go for his third birthday, then he went in January for a birthday party. This month was just because my school's PTA was having a fundraiser there.
Patrick continues to make improvements with his listening. He is getting faster with responding to sounds, and better at localizing them.

He loves the wii and has actually gotten better. However....I'm not sure how this is comfortable. 

Patrick has one of the best smiles I've ever seen. 

Patrick loves being able to hold spoons himself. 

Remember the illnesses? Yeah, this was a common sight in our home. 

Patrick's first church outfit. 

First time in the duck bath, he loves being able to sit up while bathing. 

Patrick loves doing raspberries all the time now. 

Seriously, one of the best smiles. He makes others smile all the time. 

Patrick takes special interest in whatever KB is doing, in here they're both checking out the iPad. 

A ride at Chuck E. Cheese

February

I forgot to mention that in January, Kiernan and Patrick moved from Kindercare to a nanny who watched them in her own home. It was a perfect set up! The nanny was in our ward, so we knew she was the same religion, she was born in Brazil and lived there until she was six. This meant she knew fluent Brazilian Portuguese. She has a 1 year old, which means the kids still get some interaction with someone NOT in the family. Her apartment was on the ground floor, led out to a grassy area, and they had a playground and pool. The best part? She lives five minutes from my office. The boys adjusted quickly to her, and KB would ask from time to time when we were going to go to her house. This showed me that he did enjoy his time there. While he did miss all his same age peers at kindercare, I still think the best choice was to go with the nanny so that Patrick could be given more attention.

I brought this up because she would send pictures of the kids from time to time on my cell, which I loved. She made Pizza with KB

And was able to catch Patrick rolling on her cell phone for me. 

She was a great person to work with. She was also very understanding of KB's mishaps:

Why yes, that is a mac power cord that KB managed to destroy. don't worry, we replaced it ourselves.

Patrick got his hearing aids at the beginning of this month:

 Of course I immediately start my early intervention work with him :)

The video is of him responding to my voice on one side and KB's voice on the other side.

Of course, KB had to check out the hearing himself and see what it sounded like. I kept reminding him to be quiet or it might hurt his ears because the hearing aids are turned up all the way. He was quiet....then became his three year old self and just couldn't help but get louder towards the end, he'll say ow at the end of the video :)

We did get a chance to visit my Brother and his family in TN.

I unfortunately only have one picture from the visit, and it's of the three older cousins watching Veggie tales....

Patrick learned to do raspberries:

and KB continues to work on cueing with us (he's cueing bigger in here to tell me to make the balloon get bigger):