Wednesday, December 17, 2008

Surgery 3 - 1 week post op

Today is one week post op. I removed the pain pump last Friday (not as bad as I expected), and then the sponge on the outside of Jack's left ear on Sunday. Here is a picture of his ear after the top sponge was removed last Sunday:















It was good to remove just a few stitches so that I could be prepared for today. This evening we removed the rest of the stitches and the sponges. Jack did pretty well through it all and didn't cry. Of course, there was plenty of sugary bribery involved...

I am behind at home, behind at work and just generally behind in everything. It will be a miracle if anyone sees a Christmas card from us... So, a short post here and some pics of the sponge removal...























And, last but not least... Can you say ornery?????

Wednesday, December 10, 2008

Surgery 3 went well

This morning, we arrived at the surgery center at 7:15 am this morning. Jack was a trooper. He really only asked a few times for something to eat and really was very patient. I think at about 9, they took us back. Probably the hardest part was that Jack didn't want to wear the yellow jammies they had planned for him. It wasn't until the Versaid kicked in that he finally got over the yellow jammies. Soon after that, they took him back for surgery.

They called several times to update us in the waiting room, which was very nice. It sounded like they started about 10:45am and then Dr. Reinisch came out at about 2pm. He said that he replaced the skin grafts behind both ears, replaced the puckered skin on the front of the left ear, removed the hair, fixed the scar (from the cup after the first surgery) on his scalp on the right side, and adjusted his earlobes and the tragus on each ear. He placed a wick in the left ear and we debated what to use to keep the canal open. Dr. Reinisch is not crazy about having the hard plug in there - he is a little concerned with it rubbing and exposing the medpor. I will follow up with Dr. Roberson on this...

It took a while for Jack to wake up. His ears are very swollen. They pretty much look like they did after the bug bite this summer. He has sponges behind the ears to support them and one sponge on top of his left ear when the new skin is. Once he started to perk up, he began eating. And eating. And eating. He really ate like a teenager, pretty much until he went to bed. He was kind of upset to notice himself in the mirror and touched his ears and then frowned really sour. He was not pleased with his appearance. Other than being al ittle wobbly and not happy with the sponges behind his ears, he was actually in great spriits. He watched a few movies - while he ate - and then went to sleep at about 8pm.

We have an appointment to see Dr. reinisch at 9:30am and then will head back home. I will drop Trish off on the way and should be back home before bed time tomorrow night. When we get home tomorrow, I will post pictures.



Monday, December 08, 2008

Leaving for Surgery...

Tomorrow morning Jack and I will head to LA for Jack's final surgery of the year. Hopefully this will be his last surgery...

We have a pre-op appointment with Dr. Reinisch late tomorrow and then have to be at the surgery center at 7:15am on Wednesday to check in. I am anxious to get this behind us, a little worried about what we are in for regarding recovery, and concerned of course for Jack. It is always a little nerve wracking to have such a young child under anesthesia.

The good news is that this surgery will be shorter - about 4 hours - and should have a much easier recovery. Dr. Reinisch has told me that we will have to remove stitches ourselves and probably the pain pump that will be used for the skin graft site. This will save us from another trip to LA, but I am not sure I can do it! I may have to recruit a little help...

Chris has to stay here for the week for other obligations. My mom arrives on Thursday to help with the kids. I am forever grateful to my friend, Trish for going to LA with me. It will be nice to have some company during the long wait and also an extra pair of hands.

More tomorrow...

Wednesday, November 26, 2008

Who invented it???

Little boy's underwear that is... Who designs it? Is it intentionally designed to torture little toddlers? Jack has a perma-wedgie from wearing his underwear backwards for the last 4 days. Ridiculous. Why in the world are all the characters on little boy's underwear on the butt???? Elmo, Thomas, Spiderman, all on the butt... Poor kid.

Monday, November 24, 2008

Two Years Together

Well, I have been thinking about this post for a few days. It is almost unbelievable that on 11/21/08, Jack had been with us for two years!

For the first two years of his life, he had nearly the exact same routine every day, in the same place, with the same people. Weeks went by, and one by one, his little mates left with their forever families. For two years, no one came for little Hou Dong Guo. Then, two years ago we met a very scared little boy in an orphanage a half a world away. To him, we surely looked funny, smelled funny, ate strange food and took him away from the only place he ever really knew. He trembled with fear and cried his little eyes out until he fell asleep in my arms in the cab on the way to the hotel. He woke up and we were still there and he was still scared. He clung to me day and night for a few days and then began to open up.

He came home and was embraced lovingly by his new siblings. After being home for a month, he enjoyed the miracle of hearing with the aid of his BAHA. His speech blossomed with his personality and he meshed so well with our family it was clear he was always meant to be with us. He gained 10 pounds the first year home as the night terrors dissipated and he came to realize that we are here for him no matter what. He has brought our whole family great joy as he was baptized and experienced Christmas, Easter, the Fourth of July, Halloween and other American traditions for the very first time.

His second year with us has been filled with surgeries, recoveries and healing. His language skills have progressed to above average (which has been amazing to witness) as he learned his colors, shapes, ABC's and essentially caught up to be a typically developing 4 year old. He loves his brother and sisters and is full of boyish mischief. He loves camping, swimming, reading books, Thomas the Tank Engine and Lightning McQueen. Together, we scared away monsters under the bed, learned to jump off the diving board and finally, finally (as of this week) pee in the toilet (HOOORAHHH!). He has a fabulous smile, an infectious laugh and heart warming hug. And, maybe most importantly, because of two very talented surgeons, Jack no longer needs his BAHA and has two ears that can hold up a pair of sunglasses and allow him to listen to music through headphones. We are forever grateful to everyone who has helped Jack on his journey, from the nannies in the orphanage, to his speech therapists, to his surgeons and their incredible and caring staff, to our friends and family. It truly takes a village!

Jack has been so very brave and has brought us much joy and a our fair share of tears. We didn't really know what we were in for two years ago when all this began. It seemed simple enough, the little boy in the picture tugged at our hearts. Who knew what the Lord had in store for us? An amazing journey that has barely just begun....

Little Jack, we love you!

Saturday, November 22, 2008

Stage 2 surgery decisions

Some good news to post...

Jack has been wearing his plug in his left ear pretty much all the time. We take it out about twice a week to clean it. It usually has a bit of wax and gunk in it, but has been doing its job very nicely. It does not bother Jack and we have been able to move up to the largest plug with no problems.


This week we went to see Dr. Roberson and have a hearing test. Dr. Roberson cleaned Jack's ears first and said that his ears look great. Even his left ear, the middle ear bones are touching the ear drum just as they are supposed to and the canal is looking great.

Other good news is that just in time for this hearing test, Jack's allergy problems have diminished significantly. His nose was clear, he seemed to be hearing well and his speech has been great. This was really great as we expected to use this hearing test to determine whether Jack's left ear needed a revision to improve his hearing.

As far as the hearing test, Jack's left ear tested slightly lower than his first hearing test in March. He is about 40-50 dB across frequencies, which is good, but not quite as good as the March test. His right ear is about the same, in the 40-50 dB range. This is good, given that his ear drum is using only the stapes. The great news is that given his hearing and how everything looks, Dr. Roberson feels that there is no need for a revision for his hearing or his ear canal. He also feels hopeful that his hearing will improve over time. I asked Dr. Roberson if he would recommend aiding Jack's hearing if it doesn't improve and he said it was borderline. So, we will pray for improvement and wait and see.

So, this all means that we will have Jack's third and hopefully final surgery with Dr. Reinisch on Dec. 10 at Cedar's Sinai in Los Angeles. We have not started to talk to Jack about the next surgery. I am wondering if he will remember all this, hoevever, it should be much easier this time around. In trading emails with Dr. Reinisch and observing Jack's ear, I think Jack will need some additional skin grafts. Jack has unfortunately had a lot of shrinkage of the split thickness skin grafts (from the scalp) and I think Dr. Reinisch may use a full thickness skin graft from Jack's tummy to replace the wrinkled spots that are scarring. Jack will also have the scar spots on his scalp removed and closed, hair removed from his ears and his right earlobe adjusted. I also think Dr. Reinisch will improve the projection of the left ear, which is very close to Jack's head.

Though I am anxious to have another surgery, I will be relieved to have this one behind us. I will post regularly again post surgery (as much as I can).

Please keep Mr. Jack in your prayers.

Saturday, November 01, 2008

Jack turns 4 and gets a new plug...

After MUCH anticipation, Jack turned 4 last week. He kept telling us, "MY birthday is coming up, MY birthday!" He had seen Jaden and Carter have their celebrations and he was very ready for his turn to be the center of attention. We talked about what would be his favorite thing to go do and settled on staying home. Jack's favorite thing is really not any place or thing to GO do. He loves very much for us to just spend time with him - the venue is not importatnt. So, we stayed home and just had a little party for him with everyone just spending time playing with him and his new toys. He was in heaven. Sometimes it is hard to believe that he is 4. He is still our little guy, his hands still seem so small and he still loves to snuggle. Here is a picture and a little video clip:


video\

Halloween was great fun. Jack had a Thomas costume, which I think he refused to wear at school and suddenly decided was an okay idea just before we went trick-or-treating. I simply can't explain the logic of a four year old, but in the end, all was fine. Here is the cutie all dressed up and ready to go:



















So, Mr. Allergy (aka Jack) is doing better. We are using Zyrtec daily with Rhinocort spray and frequent saline spray to keep his nose clear. All of this seems to be helping his sinuses and allergies. That helps his hearing, which in turn helps his behavior. So, good news there. His right ear canal is looking much better and the plug is doing its job.



I traded emails with Dr. Roberson this morning and we decided to put the next larger plug in Jack's right ear. Hopefully this will keep the canal open and enlarge it before the next surgery, which is scheduled in December. Then, if some scar tissue still needs to be removed, it can be done at that time.

Wednesday, October 15, 2008

Left ear update

Last week the molds came in. On Friday, I took Jack to Palo Alto to pick them up. Dr. Colen removed the wick, cleaned his ears out said they both look really good. She then inserted the plug in the left ear. We then had it modified a little by shaving off a little of the outside rim and putting a small hole in it so we could tether it to his shirt.

We came back home and right away it was persistently falling out. Here was the solution to that problem:















We had Jack wear the plug all day and night until Monday. We have been taking it out while he is at preschool. It is pretty tight when we put it back in, but he seems to not be bothered by it when it is in place. He seems to be hearing a little better and things are looking good.

We will graduate to a larger plug soon and are praying that this will do the trick.

All for now...

Wednesday, October 01, 2008

Progress comes in little bits

I know, long time without and update. So sorry. This one will be worth it, though...

Last week I took Jack to California Ear Institute. His hearing test was pretty horrible, but his ear has some debris in it and he is all stuffed up from allergies. The good news is that his ear canal is still open and Dr. Roberson was able to make an impression of his ear canal to have a mold made. They will have 4 serially larger molds made with a hole down the middle so Jack can hear while wearing it. We will put the smallest one in first and then will move up to the larger ones to hopefully keep the canal open. Before we left, Dr. Roberson was able to get a wick in place really well. So, that was all good. Now, we wait for the molds to come in...

So, here is the "worth it" part. Jack LOVES dinosaurs. I can hardly say the names. Jack is simply fascinated with the dinosaurs themselves and the complicated names for them. Here I am reading some off to him with him repeating them.

Pretty AWESOME!

video

Friday, September 12, 2008

Quick update

Well, the Tobradex drops we are using in Jack's ear appear to be helping quite a bit. The wick is loose and even fell out this week because the ear canal is opening up so much. We are keeping a bandage on the ear to keep the wick in and moist with the drops. We are relieved that it seems to be much better. I will try to post some pictures in the next few days.

Friday, September 05, 2008

A setback week...

Well, last weekend while in Colorado to visit family, we noticed that Jack's left ear canal (second surgery) began swelling. The outer ear seemed fine. We thought maybe he was just having a tough time with allergies. By Monday, his left ear was essentially swollen shut. I emailed Dr. Roberson and Dr. Reinisch and it was decided that we should bring him down to Palo Alto. Chris cancelled everything at work and took Jack to Palo Alto on Wednesday. Dr. Roberson says that it is not actually swollen, but scarring. He had a very tough time putting in a wick and it was rough on everyone involved. Jack was very upset. Chris came home with Jack and unbelievably, by bedtime, the wick had fallen out. I emailed Dr. Roberson again with the bad news. He thought it might make a difference if we tried again. So, I cancelled my obligations at work today and took Jack down to Palo Alto today. After much effort, Dr. Colen got another wick inserted. Jack was very brave, but ended up completely hysterical. I felt so bad for him. It was hard not to cry with him. We put a bandaid over his ear in the hopes that it will help keep the wick from getting snagged on something and falling out again. We will keep a bandaid on his ear and use Tobradex drops which have a steroid in them. It is the hope that this will open the canal enough that by the next time we are back to see Dr. Roberson in a few weeks, a silicone plug can be made to force the canal open a little more. If this works, we will use progressively larger plugs to hold the canal open. If all that does not work, Jack will have to have the scar tissue removed and the canal re-lined at his next surgery. This is all so dissappointing. Jack's hearing is much improved (along with his behavior) with his left ear functioning. This could result in Jack having little hearing in his left ear until January. I am so sad to have this have this happen.

Please keep Jack in your prayers...

Sunday, August 24, 2008

The best (or worst) mom ever!

It all depends on your perspective...

Yesterday, Chris and Carter were off at a soccer tournament and I stayed here for Darby's tourney. Jack and Jaden stayed here with us, so we were busy as usual. So after Darby's games, I did some things around the house and before I knew it, it was 4:30pm. Dinner time was approaching and my charges would soon begin asking the dreaded question, "What's for dinner???" So, to head it off at the pass, I suggested that Darby look up a movie on the internet. We were goin' out. We settled on Wall-E and headed out.

I think Jack has only been to the theater once or twice, so he is still very excited about the whole experience. Jaden could care less about the movie, it is really about the junk food for her. So, when the previews are over, Jack has a pile of popcorn in his lap and the fireworks are shooting over the Disney castle on the big screen. He looks over at me with the biggest grin he can create and says, "It's boo-tee-full mommy!!!!" He was sooooo happy. Jaden was her normal self and pretty much talked non-stop through the whole movie. I swear the only time that child is quiet is when she is sleeping.

So here is where the best/worst mom in the world part comes in...

We all enjoyed the movie (excpet for Jaden who has no idea what she saw) and were headed home at about 8pm when Jaden has an epiphany in the back seat.... "Mom, we ate popcorn, candy and slurpees for dinner!!!" Darby and I just about died laughing. I don't think I have EVER fed my children such a meal in all my nearly 13 years of parenting. That's dad's job and the kids know it - ha.

So, here I am, hoping no social worker is reading this and feeling secure that my kids thought, for just one day, that I am indeed the BEST mom in the world.

Monday, August 18, 2008

Finally better - 7 months right ear, 3 months left

I am sorry, I know it has been a while since I posted last. Jack has really struggled since the bug bite. His left ear has been infected ever since. The latest round of drops appeared to be working much better. The inflamation in the left ear had visibly dissipated and the ear was much less red. We saw Dr. Roberson this week and he removed the wick. Both Jack's ear drums looked good and he can hear much better after having them cleaned. I think his ornery factor has gone down a fair bit as well! He was very happy to be cleared to go swimming on Sunday and was quite the fish! Here are the recent pics:




















So, we did a "staycation" this past week and toured around northern California with some good friends from out of state. We played on the beach at lake Tahoe, camped in the Santa Cruz mountains, hiked, toured Alcatraz, Fisherman's wharf and Chinatown in San Fran, drove up the coast and rode the famous "skunk train," drove through a giant redwood tree and toured a lighthouse. Some carsickness and lots of photos later, we arrived back home and send the kids back to school this morning. I think we are all relieved to be back in our routine. I highly recommend the staycation - discover your backyard!

Here are some pics from our adventures:















I will add more from the other camera soon.

Also another big day for Jack today! We finalized his re-adoption in California. One last pile of adoption paperwork complete! Jack will now recieve a California birth certificate. It's official, he is stuck with us for the rest of his life!

Sunday, July 20, 2008

One week post bug bite...

Well, I think Jack has nearly recovered. The swelling is gone. On Friday, we went to California Ear Institute at Palo Alto for a check up and to have the wick removed. His right ear, which was the one that was so swollen, was completely clear. His left ear, which was not swollen but was the more recent surgery, is still a bit infected. So, we are still using Floxin drops two times a day and will return to Palo Alto Friday for one more check up.

Here are some pics from tonight.





Wednesday, July 16, 2008

The swelling is down

Update on the bug bite...

Chris took Jack to see Dr Roberson on Tuesday. They put a wick in each ear canal as the left (not the one that was extremely swollen) was infected and the other was risking infection. The wick allows the drops to get into the canal and to the ear drum. He will have these removed on Friday. Dr. Roberson suspects an allergic reaction to the bite.

Here are some pictures from today:
















As you can see, the swelling has gone down significantly and things are looking better.

Jack is needing to wear his BAHA to hear. We are thankful to have it.

All for now...

Sunday, July 13, 2008

Not enough bug spray...

Well, this weekend we went camping. Our first camping trip since before Jack's last surgery. We stayed pretty close to home, but far enough to be out of cell phone range. Not having cell phone coverage is relaxing and I needed it.

We had a great time roasting marshmallows, playing in the river and for the kids - playing in the dirt. This happens to be Jack's favorite pastime. Give the kid a shovel, bucket and a dump truck and really nothing else matters. The saying, "take only pictures and leave only footprints" doesn't apply to Jack. Or for the rest of my kids. We bring home dirt. Lots of it. In the car, in their hair, on their bodies, on the gear. They played either in the dirt or in the river most of the time. A kid's paradise!

















On Saturday, Jack and Jaden insisted they were not tired enough for a nap. What do you think????
















Unfortunately, we also got eaten alive by mosquitos. We sprayed and sprayed and still got bit. I am pretty unscathed. But the dirt diggers got it pretty bad. So, last night, I noticed Jack's right ear (first surgery) looked a little swollen. It looked like it might have been bitten by a mosquito. This morning, we were shocked to see his ear looking like this:















So, the blessing of no cell phone coverage made me a bit stressed at that point. We packed up everything in a big hustle with much appreciated help from our fellow campers. We hightailed it back in to cell phone range and immediately called Dr. Reinisch. He said he has seen this before and would call in an antibiotic as a precaution. He said he thought it would be better within about a day. We traded emails with Dr. Roberson and Dr. Reinisch and sent pictures. We have now given Jack 4 doses and are praying for some improvement by morning. If not, we will be headed to Palo Alto early this week. His ear canal is swollen completely shut and he really isn't hearing well at all.

So, keep Jack in your prayers....

Thursday, July 10, 2008

Surgery 2 - two months

Well, Jack is doing great. He is VERY happy to be able to swim. In a stroke of amazing luck, one of the interns at work has lifeguard experience and we hired her to give the kids some swimming lessons. I will have to get a video clip of the new family fish! Jack is a head down, legs kickin', doggy paddling machine. And, quite proud of himself too, I might add. I think the major difference is that he can hear us while he is swimming.

We have noticed that he is very loud and loves to hum and jabber nonsense as he plays now. He has also started a retro kick of raspberry blowing and tongue clicking. These are things the other kids did as babies and I never heard Jack doing this. I think there is something about exploring those sounds that is just fascinating him! So, all that is fun.

Here are some pics from today of Jack's ears. I have noticed that his right ear (first surgery) is getting sunscreen stuck in the little nooks. Kind of nice to finally have that problem. I think it is still slowly gaining some definition.














His left ear is softening up a lot and is slowly looking better.
















His scalp hair is slowly filling in.















We have a happy boy!

Thursday, June 26, 2008

Update - post surgery #2 hearing test

I just wanted to post an update since Jack's hearing test this week. Dr. Colen cleaned out Jack's ears prior to the test this time. We then went over for the test. The audiologist had Jack throw balls into a little basket when he heard the tones. He was so funny, he had to smack the ball she was holding with his ball before he would wait for the tone - kind of like a little "cheers!" He did pretty well, but ran out of steam at the end. At the very high frequency, he tested at a pretty significant loss, but that could have been because he wasn't paying attention well enough. A couple of times he was waiting and said, "I can't hear it!"

Anyway, his hearing is much better than I expected on the day of surgery. He is hearing at about 40dB across frequencies - except the very highest. Of course we have seen this in his speech over the past few weeks. He has just gotten so much more clear and he is giving Jaden a run for her money on airwave time - he is talking so much!

Of course, we have a waiting game here now to see if the hearing stabilizes at this level - hopefully it will. If it does, Dr. Roberson does not think that we will need to aid Jack's hearing from this point forward. Amazing. He says that two ears working together at that level should serve Jack very well.

We continue to be a little dissapointed in the shrinkage that we are seeing with the skin grafts resulting in wrinkling on the front of his left ear and the backs of both ears. I have asked Dr. Reinisch about this and he says it is from the use of the split thickness skin grafts. He says they see this a little sometimes - more often with asian skin. He has also said that Jack is in a league of his own on this issue. He says we will just have to see how much they soften over time and address it at the stage 2 surgery. He said he may have to add a little skin.

Dr. Roberson and Dr. Colen felt that the little white spot on Jack's left ear is actually the medpor framework that we can see through the skin. This is where the skin struggled and peeled off. We will see what Dr. Reinisch says, but they were pretty certain. Neither of them felt it was at risk of exposure.

So, we are scheduled for December 22 for Stage 2 in Palo Alto and will probably keep this date even though Dr. Roberson will likely not need to do a revision.

When I get a chance, I will post Jack's audiogram here:




All for now!

Monday, June 16, 2008

Surgery 2, Day 30

Jack continues to do really well. We have been having him wear hats to prevent sunburn on his scalp where the skin graft came from. The hair is coming in a little thin and is taking some time to come in the rest of the way. This weekend, he saw a "Cars" hat and just had to have it. If a kid has to wear a hat, he might as well like it, huh? It was pretty darn cute too...














Here are some pictures of his left ear. It continues to heal and look better each day. There is some reddish crusty stuff in his ear canal that seems to be accumulating. I emailed Dr. Roberson tonight, but I am sure he will say it is nothing to worry about and that they will clean it out when he has his hearing test.
















We think he is hearing very well right now and he has been a lot more conversational and his speech has been much more clear.

Big kid update... Carter got his braces off today - yippeee! His speech is much more clear now too - ha! Darby had her first appointment with the orthodontist today and will be getting her braces this summer. Good thing we like this guy as it looks like we will still be seeing him regularly...

Friday, June 06, 2008

Surgery 1 - right ear at 5 months

It has taken a few days since removing the sock that the swelling in Jack's right ear has finally starting to dissipate. He was also sleeping on it, and that made it swell more too. Now that the cup is off, he is sleeping more on his back. It has been nearly 5 months since his first surgery, so I thought I would post a picture of his right ear. I have noticed that it is becoming much more defined than I remember it being prior to the second surgery. I think his ears are healing much more slowly than others that I have seen pictures of. Dr. Reinisch has said that often asian skin heals more slowly. I suppose he IS the expert....

Wednesday, June 04, 2008

Suregy 2 - Day 24 - Check up

Today, Jack had a post op appointment in Palo Alto. We plan to leave the cup and netting off from this point forward. I don't know if I am just more comfortable this time or what, but his ear seems to look more healed to me. I asked Jack if he could hear me out of his new ear and he says no. Who knows if that is actually the case. We will know more when he has his hearing tested, which will be on June 25. Dr. Colen removed most of the packing but left a small amount which will dissolve over time. We will still put drops in Jack's ear twice a day. He is not allowed to swim just yet - bummer. It is hard when all the other kids can and he can't. So, here are today's pictures of Jack's left ear:
















He was quite thrilled to put Jaden's sunglasses on - conveniently held up by a pair of ... EARS!
















He is doing MUCH better behavior-wise, which might be related to the fact that he has been back in preschool (and away from me???). He is just generally happier! I have bought him two new hats from Old Navy. We are concerned about the skin graft site on his head and sun exposure. We are just going to try to keep a hat on him all the time. So, I got him to say his ABC's...

video

Today was Jack's last day of speech preschool for this year. I took Jack there first thing before he went to Palo Alto to give the teachers each a little thank you note. I was thinking that about two years ago, we first saw Jack's file. He was in an orphanage on the other side of the world. Had he stayed there, we would never have experienced the joy of this little boy... seen his smile every day, felt his sincere hugs. He would likely never heard leaves rustle in the forest, never heard water run from a faucet and may have never spoken a word. I think it has taken a small army of helpers for Jack to hear and to speak - to be able to say his ABC's! My gratitude runs deep for everyone who has supported us on this fantastic journey. Jack has learned a lot and taught us a lot - he was meant to be with us.