August 17, 2012 - Day After Surgery

It is the day after surgery and we had to take the outer bandages off.  After taking the outer bandages off, we instilled five drops of the antibiotic ear drops and covered the inner ear packing with a cotton ball.  I tried to clean the outside of the ear with peroxide the best I could.  But as you can see by the pictures, the doctor basically cut her ear from top to bottom on the backside and pulled the ear away from the head to get in and do what he needed to do.  To do this, they had to shave a little bit of her hair off again.  No matter, her hair is like a weed and grows super fast! 

She has been in no pain at all amazingly.  The only pain she complained about was getting up this morning and her neck hurting from how she had to sleep (propped up on her pillow).  We've been giving her tylenol every four hours just in case, trying to keep on top of it in case there really is pain, but the tylenol is helping it.

Here's a few pictures of what the incision looks like so you can get the general idea.

December 27, 2011 Ashlyn's post-op visit to get bandages off

Alright, so Kaylyn ran a 101 fever this morning at 4:00 am, got tylenol and came back down to 98.3 most of the day.  We headed over to Tampa to see Ashlyn's ear doctor to take the bandages off.  She was scared when he was taking the bandages off as you can see in the pictures.  Then we headed to Sonny's to meet my sister Kara, her husband Chris, and their little one Kalia.  She is so funny...when she starts to cry, all you have to do is get out the camera and she instantly smiles for the camera to take pictures.  She's only 6 months old and already doing this!  It's so funny!  Then we headed to David's Bridal so that I could order the dress and shoes for my other sister's wedding in April.  We got back in the car at 2:00 pm, took Kaylyn's temperature and it was back up to 100.3.  Ugh!  Gave more tylenol and she's staying at 99.  She has an appointment tomorrow at 9:45 and I have surgery at 10:30.  It's going to be another long day tomorrow.  Sometime in between this time off work, getting over sicknesses, and healing, we need to do Kaylyn's science project!

Ashlyn with her surgery bears that have the same bandages

 Ashlyn & Dr. Farrior before taking the bandages off

 Before picture of Ashlyn's left ear (kind of a bad pic)...only a little bit of her ear was fixed on the outside of this ear near the bottom.  This was the ear that had major surgery in March to remove the cholesteatoma.  This time he only had to chip some bone growth away that occurred and fix an air pocket that formed in her ear drum.  He said there was no disease in this ear anymore!

 Here is the after picture of Ashlyn's left ear.  We have to put 6 drops of antibiotic ear drops in her ear 3 times every day and cannot get the ear wet for 6-8 weeks.

 Here is the before picture of Ashlyn's right ear.  The doctor explained that it was an underdeveloped ear and lacked cartilage in parts of her ear.

 This is the after picture of Ashlyn's right ear.  It was pretty swollen still since there was a lot of stuff done on it.  He has three focal points that he tries to get the distance from the head to the outside of the ear and he said all three focal points matched perfectly.  Can't wait until the swelling goes down!

 

Wish I had a before picture of this because this would be the best picture of all to show the differences between the two ears.  Other than the swelling on the right ear, the ears look very similar now.  Amazing what Dr. Dean Davis did!

 Kalia at Sonny's with us and her parents

 Aunt Kara and Kalia

 Kaylyn, Kalia, & Aunt Kara.  Kaylyn was so happy to finally get to be near Kalia since we are pretty sure she is no longer contagious!

Aunt Kara & Kalia doing sacks of potatoes (and Uncle Chris to the side)

Ashlyn finally got to take her hair out of those awful rubber band ponytails.  They shaved her hair behind each ear, but her hair grows so fast, it will be nothing.  Also, she has to wear these bands around for 6 weeks to prevent her ear snagging on anything and "ripping".  The doc told us to get a sweat band, but I think the cloth headbands are much cuter ;-)  Now, I just can't wait until we can wash her hair.  I have a feeling we'll be using a lot of the powder shampoo since we can't get her ears wet.

December 22, 2011 Ashlyn's Ear surgeries

Ashlyn did really well with her ear surgery. Poor thing is all bandaged up, but she is being a real trooper. It’s a good thing we took her out of soccer because she can’t do any physical activity for about 6-8 weeks.  She’s not in a lot of pain at all, which surprises the doctors.  The funniest thing though...as we were walking out from post-op to holding she was telling everyone good luck and she did the same thing when being rolled out on the bed from holding to the OR.  Too funny!  She gets claustrophobic I think because when they put the mask on her, she said that was when she kicked.  She had a large bruise on the heel of one of her feet and she said it hurt real bad.

One year ago Jason was rushed to the ER from an urgent care doc when he was having chest pains radiating through his back. Turned out to be pneumonia in the bottom of his lung. Well, this year at the same time, Kaylyn was just diagnosed with pneumonia. She's had almost a 103 fever for 7 days straight now diagnosed with strep in the beginning. She also had a cough and the fever hadn't gone away after 9 doses of antibiotic. We saw the doc again yesterday (12/23/11) and she didn't know what it was, but ordered a chest x-ray just in case and some blood work to see if it could be mono. The chest x-ray showed some pneumonia so we started her on z-pack last night. Doc said she should be fever free by Christmas morning. Poor baby had to be isolated everywhere since Ashlyn was having surgery and we stayed with my sister and her 6 month old. She had Motrin at 5:00 am this morning with a 102.7 degree fever.  Hopefully she breaks the fever tonight.  I wish I could help her with her cough though, but she is sounding a little better today (12/24/11)!

 Both ears a few weeks ago.

 Left ear that had the cholesteatoma surgery (this is pre-2nd surgery)

 Left ear pre-surgery

Ashlyn in the pre-op room.

 Ashlyn in the holding room.

Ashlyn with her surgery bears.  They come out of surgery bandaged exactly the same as her!  Really cute.  She named the bears Ashlyn & Tucker :-)

Ashlyn in the recovery room coming in and out of sleep.  Was okay once we were there...she would open her eyes to make sure one of us was there and then she would go back to sleep.  Poor thing!  She did so well though.

Ashlyn's Ear September 26, 2011

So Ashlyn saw the ear doctor today in Tampa for a follow-up/pre-op visit.  She also saw a plastic surgeon to talk about fixing her other ear that was not fully developed when she was born.  He said that he could fix it so that it looks like her other ear.  She had the hearing test before seeing the doctor and we got some really good news from that.  Her hearing has improved from 50 decibels (the last visit) all the way up to 18 decibels!  It’s almost the same as the other good ear!!!  There was something of concern though, her ear has formed an air pocket which is indicative of another cholesteatoma trying to form, but it just means there will be more to fix when he goes back in her ear in December.  He lifted the ear drum a little to make sure it looked good where the air pocket was.  She cried a little, but held still like a big girl.  He said it looked okay, and could be clean because we still flush it with the solution and blow dry it every time it gets wet.  We are going to schedule the surgery for December 22^nd so that she doesn’t miss any school and will be mostly healed before coming back to school hopefully.  We are very excited about her hearing improvement though.

Here’s a funny little side note though:  The plastic surgeon said “Hello, how are you?” to Ashlyn and she responded.  Based on her response, he pulled his little light out and told Ashlyn to open up.  He looked in her mouth and said, oh, she has a submucous cleft palate.  This from someone who saw her for only a minute and hadn’t read her chart yet, whereas an ENT she saw for 6 months who performed a tonsillectomy, partial adenoidectomy, and tubes in her ears couldn’t diagnose her not only with the cholesteatoma that was poking through her ear drum and going towards her brain, but also the submucous cleft palate.  Jason was just amazed and asked how he knew, and he said just from the way she spoke and then for sure when he looked and saw.  Amazing!

Just wanted to let everyone know since some of you were following along through last year when she went through all of this.  She’s doing so well and hopefully with the tutoring and speech therapy we can get her caught up with all the other kids with language quicker than not.  I’m hopeful…look at how far God has brought our little girl so far in such a short amount of time.  It hasn’t even been two years yet.  November 23^rd will be the 2^nd anniversary of our Gotcha Day (the day we met Ashlyn for the first time).

Anyways, hope everyone is having a wonderful week so far!

Ashlyn and I Are Recovering & Easter

First of all, let's talk about Ashlyn's ear recovery. She had her ear doctor appointment in Tampa on Monday. He took the inner ear packing out and was ready to put more in and decided that it looked good enough to keep it out. He suctioned out the remains of the skin graft and other stuff. We have to blow dry her ear 3 times a day (using a tiny funnel and blow dryer). It still cannot get wet. We have an appointment with her ENT here to do a hearing test and check-up on Friday May 27th and if everything looks good we will start flushing it out with a solution three times a day. When this occurs, she can start getting it wet again then. We have another appointment scheduled near the end of June if the hearing test isn't any better to discuss options we can do during the next surgery at the end of the year. So we’re one step closer ;-)

Now let's talk about my recovery. Let's just say, adults better be prepared for some serious pain when getting a tonsillectomy. This Thursday will be four weeks since the surgery. My throat only hurts now when I yawn, and it's not an excruciating hurt anymore. My nose is still a little stuffy, but is slowly getting drier and drier and hurting less and less when knocked into (kids & dog giving kisses). I would hope that in another week, I should be fully recovered, if I'm guestimating my body correctly ;-)

I never got around to posting Easter pictures. We went to Daytona Beach Shores to visit with Nana & Papa at there condo on the river/beach. We had a nice time. On the way home, we stopped at Wai-po and Wai-gongs house to see Aunt Kara one last time before they headed back over to Clearwater. Here are some pictures.

Still Recovering

Oh my...now I know why they say it's harder as an adult to get your tonsils out. I think they are just plain bigger and more rooted when they take them out. Believe it or not, the first couple of days were not the worst, but the 6-8 (and maybe more because this is day 8) are the worst. I have to continually watch for bleeding and when I see it, I have to drink very cold ice water to stop the bleeding. As long as I can keep it under control, I'm fine. I'm very nervous about not being able to control it and having to go the ER. It's a fear that I'm struggling with, but am getting better with. The pain medicine can no longer keep up with the pain like it could. By hour 3 my throat is hurting for more pain meds, but I can only take it every 4 hours. Now I know why they gave me two huge bottles of pain meds with a refill, which I've refilled. I never wanted to be on pain meds this long, but I think I might literally die of pain if I didn't take them.

So I went to the ENT for post-op yesterday. The nurse was amazed at how much the ENT had done to me all at once and she was glad she did because it's easier to go through one surgery rather than multiple surgeries. The ENT was going to de-scab my nose for quicker, better healing. Well, the inside of my nose is still so swollen, she couldn't do it and we rescheduled it for next week. At least I can mostly breathe out of my nose now, because I couldn't for the first 4 days after surgery. I've been using a saline solution in a bottle to flush out my nose a couple of times a day. It still bleeds though and is very sore to touch, especially after the appt yesterday with the attempt to de-scab my nose. I will be such a happy camper when all of this recovery stuff is done and I can resume a normal life with hopefully better health.

If anyone is considering having anything like this done, feel free to email me and ask me about it. I hope I have posted enough on it to give you an idea, and hopefully in next couple of weeks I can do a post-recovery post on here to let you know how much it has helped.

Ashlyn's Ear March 23, 2011

Ashlyn went back to Dr. Farrior today to get the inner ear packing removed and new clean inner ear packing put in. It was bleeding still when he took out the original stuff, but he said it looked good and there wasn't any infection. He talked to Jason a little more about the cholesteatoma (cyst) that was in her ear. He said that it was just pure massive and that there wasn't a place in her ear that it wasn't in. Only 2% of his cases he does not get the cholesteatoma out in one surgery and has to go back in....well, today he said that he had not been confident that he got it all out and he will need to go back in at the end of the year. He said the next surgery will not be as extensive and since he's going back in anyways, if he sees anything he can do to improve her hearing, he will do. He will basically lift the ear drum and if there's any air pockets, that means that there's cholesteatoma left and he will explore from there.

I feel bad that she wasn't diagnosed with this sooner, and if I hadn't been persistent and fired the first ENT and sought out the pediatric ENT, we may not have found it until it caused other severe problems. We are so thankful that we found the right doctor, thanks to my mom's ENT neighbor, to do the ear surgery. He's just that good!

On another note, Kaylyn went to the Southern District Science Fair this morning and had to answer questions with the judges. She didn't place, but there were over 500 contestants...oh well. I think she had fun with the whole process and learned a lot.



I'm just so proud of how smart my girls are. Kaylyn's Straight As (principal's list) and Ashlyn's A/B Honor Roll. This is awesome for Ashlyn seeing as she never attended school before 1.5 years ago and is now getting Bs in reading. The comprehension is still a little behind, but this is due to some of the language barriers that still exist. She got an A in phonics and a B in math too. She's doing awesome! Also, her speech is improving a lot with speech therapy. She's learning to say certain letters the correct way with her submucous cleft palate so that she can be more easily understood. The next big task is checking her eye sight. We've been told by two different individuals that work with her that think she might have some sight issues (reads to close to the books/papers consistently). One step at a time to make my child's life healthier and easier!

God was so awesome in showing us how much we could love another individual that did not come from us biologically. We fell in love with this child almost instantly and to me, there is no difference between biological and adopted. They are loved equally and abundantly.

Ashlyn's Ear Surgery March 10, 2011

Ashlyn pulled through her surgery great! It took 3.5 hours to remove the cholesteatoma and it was the biggest one the doctor has ever seen. It went into her mastoid completely. There was no bone left, so he reconstructed the bone of hearing using part of her skull bone. He took a skin graft from her leg to promote quicker healing (he's patented this).

There's a lot of bleeding, but he said this was normal. At the beginning of the surgery, I told God that I trusted him and to give me peace about the surgery. For the most part He did. He said it would take 2.5 to 3 hours, so when it went over 3 hours I got a little worried, but not too bad. Thank you to all the people at work who gave me great Bible verses to read during the surgery. Thank you to all my friends and family for all the prayers. God is good! He said he would probably go back in at the end of the year to do a open up and look to make sure he got it all. Only 2% of his cases he has to go back in, so that tells you how bad it was.

Ashlyn has a surgery bear that had the same surgery, getting the same wrapping on the same ear! Too cute.

Here's Ashlyn after the bandages were taken off the day after surgery. There's an inner "cork" packing and we just put clean cotton balls on a couple of times a day with ear drops.

I think the most painful thing for Ashlyn has been the skin graft on her leg. The heel of her foot also has a bruise because when she woke up from anesthesia, she woke up kicking. She kicked a nurse and they sedated her a little, but I think she might have kicked the bed too causing her heel to be sore and bruised. Poor baby!

Ear complications

We went to the pediatric cardiologist last Tuesday (February 1st) to get the ok for her going under anesthesia for 2-3 hours. While there, the EKG showed a premature beat and he wanted to do a 24 hour halter monitor to get a better idea of what is going on. He said we probably wouldn't get the report on that for one to two weeks, but thinks she should be ok to do the surgery.

We went to the ENT today. Ashlyn's bad ear has another serious infection and the ENT said she would be on antibiotic ear drops at least until she has surgery. We told him the bad news that we would be going over to Tampa to meet with an ear doctor (otologist) who is well known and highly recommended. The ENT said she might need up to four surgeries to get all the cholesteatoma and to put in artificial bones (he didn't see any bones, ossicles, in the CT Scan). He wasn't too happy about us going over to Tampa instead of using him, but he tried to be understanding about it. He seems like a good man, but it's hard when someone tells you that they don't want to use you because you want just an ear specialist and not an ear, nose, & throat specialist. If we don't get a good feeling from the Tampa group, then we will definitely fall back on him.

This is kind of scary for me...and we haven't even begun to tell Ashlyn what's going on. It's better to keep her happy go lucky until maybe the day before. We usually down play it too...we'll probably say something like, they're going to put you to sleep so they can get all the yucky out of your ear and get it better so that you can hear better. It usually seems to work with her.

Ashlyn's Hearing Loss

Well there's good news and bad news. First, the good news...we found out what is causing Ashlyn's conductive hearing loss. It showed up in the catscan! It's called cholesteatoma. Unfortunately, she's had it for awhile and it's pretty bad. The bad news...she needs multiple surgeries to remove the cholesteatoma and reconstruct some of the ear bones. If interested, you can read about it here: http://www.earsite.com/tumors/cholesteatoma.html.

It has actually been there awhile and is going past the point it should and she needs surgery in the next month or month and a half. The ENT wants us to see the pediatric cardiologist again before doing this surgery to see if she'll be ok for general anesthesia. We have this appointment set for February 1st at Shands. Then we have the appointment with the ENT on February 7th to set a surgery day and go over the pre-op stuff. It is an outpatient surgery where she will be under 2-3 hours each time she has the surgery. The ENT will have to keep doing the surgery until he goes back and does not see any more of the bad cells. There is permanent damage to her ear bones (erosion). He will probably do some reconstruction of these bones the last time he goes in. Hearing is not our main concern right now and we will discuss these things with the doctor after he does the multiple mastoidectomy surgeries to eradicate the cholesteatoma. Teh second surgery will be months after the first (like 6 to 12 months I believe is what he said). We feel that this was caused by the multiple untreated ear infections she had while in China (she had a really bad one when we got her in China a little over a year ago and the Chinese doctor said it was nothing…but took 3 months to get rid of while here).

God definitely led us down the path we are today so that we could go get her and get her the treatments/surgeries she needed to live a happy, healthy, normal life! I couldn’t even imagine if she had never been adopted out, that this problem could actually cause complete hearing loss along with permanent facial nerve damage and possible brain issues. God keeps amazing me in the fact that He keeps leading us down the paths that we need to go to find out what her actual problems are that need to be treated because she was never diagnosed with any of these things while in China. We’ve even had issues with some of the doctors here not knowing what they are doing. There are reasons in my gut as to why I keep persisting when it comes to certain things…I just know, and God has given this to me!

I just wanted to let everyone know how amazing it is that this older child half way around the world can be united with you, a perfect stranger, and in a matter of days you can love this child as if they came from your womb. It's the most amazing blessing from God!

Ashlyn's Ears Part Two

OK...so we had yet another hearing test done with Ashlyn (this makes 4 total). The results were still not good with her left ear. Not the results the new pediatric ENT we are taking her to wanted to see. We have a catscan set up for December 23rd to see what could be causing it and we have an appointment with the ENT on January 19th to see if she's a candidate for a hearing aide in that ear.

My gut feeling tells me that since she was never diagnosed with the submucous cleft palate, she's had so much fluid build-up in her ears over the last 7 years, and it has caused permanent damage. I'm only hoping that the her ear drum can get the amplification needed to be able to hear better with a hearing aide. I can only imagine that this would probably help some with her speech also in the long run.