Count down begins!

We are starting to prepare for our trip to LA for Roberts Aug 7 stage 2 surgery. Things seem to be going good for his medpor. It continues to take more shape and looks better each day. Roberts canal is having issues with gunk and infection and seems to be closing up a lot. We are hoping to get these issues addressed soon and are trying to take it one step at a time and not overwhelm ourselves. Robbie is getting his post op 4 month hearing test tomorrow. I am very nervous and excited about seeing how his hearing is. I am attaching some pics which would be 120 days post op.

Culture that ENT took ended up being a yeast infection in the canal. We picked up our new drops and are hoping for the best and that this clears up.

Update

Today Robbie has an ENT appointment so they can take a culture of his canal. After his cleaning Tuesday the ENT said there is still an area on the outer canal that looks like a pocket where the skin graphs over lap. He says that seems to be the problem area. I am hoping the culture can figure out what exactly it is and what antibiotic can cure it. He has had 10 ENT appointments since his March surgery because his canal infection clogs up fast.
Other than that Robbie started preschool Monday and loves it. His medpor is looking pretty good and has not swelled back up. There is a spot on it that is growing blonde hair but other than that so far so good. Behind his left ear where the skin graph was taken STILL has not healed. I am hoping that this is something Dr Reinisch will address and can fix if its still a problem in August when he has the stage 2. I will post when I get the results back from the ENT.

Cute Pics

Much Better

Robbies ear is looking much better after being on the antibiotics and ear drops for over a week now. His canal does not have any of that white stuff anymore and the medpor ear is not swollen and continues to look better each day. Robbie had his canal cleaned again yesterday so we can use the drops and it had much less stuff in it then last week. The ENT said its looking much better and we will see how it does after he is off all the medicine.
These pictures are a couple I sent to Reinisch on Sunday. The one with his head tilted a bit is a good angle to see how much the skin has shrunk and pulled. When I talked to Reinisch on the phone we did discuss ROberts stage 2 a bit and he said it will be a pretty easy surgery and he would take the skin of course from the tummy this time because of how much the scalp skin shrunk.

Update

Robbies medpor ear for the most part had been looking pretty good for the last couple weeks. On Sunday when he woke I noticed it was swollen. There was also a red bump on the top of the medpor and the ear canal had a milky looking substance filling it. I took some pictures and again emailed Dr Reinisch to let him know what was going on. Dr. Reinisch called me on Monday afternoon and said it looks like a bug bite which he sees alot of in the summer. He called in some antibiotics and it is looking better since he has been taking the medicine. Everyday at bath time the medpor drains a puss or a clear liquid from the same spot but it continues to be less each night.
Today we went to the ENT to get the canal checked. I was completely shocked by how much stuff they pulled out of the canal. The ENT said there is definatly an infection in the canal and to keep doing the drops and medicine as instructed by Reinisch. There was a part of the canal where he said the skin graph was elevated. There has been some concern of a possible medpor exposure but I guess its a wait game to see how everything goes with the medicines. I just hope everything heals up and we can keep our stage 2 for August. Please keep us in your prayers.

Stress, Stress, and MORE STRESS!!!

So the last week has been a pretty stressful one to say the least. Robert had apparently bumped or scraped his medpor ear sometime last week which made it ooze a orange/white slimy substance. During bath time I gently pushed around it trying to get everything out and took pictures and sent Dr. Reinisch an email.
Friday was his 4 year old shots, and his brothers physical and shots for junior high. Robert had a low grade fever and both him and his brother had to get four shots each. Not a fun time at the doctors.
After talking to Dr. Reinisch on Saturday morning Roberts ear was looking much better and had no more drainage. By Sunday it had a nice shape to it and looked the best I had ever seen it. I wish had taken some pictures Sunday afternoon because last night Robert bonked his medpor ear on the cupboard in the kitchen and split the top open. He was in there less than a second and Tom and I feel awful and were in total disbelief and shock. Of course we sent Dr. Reinisch more pictures and put some Vaseline on it to keep it shut and hope it clots up and didn't cause any damage. AUGHHHHHHHHH! Things have to get better sometime right?
We have scheduled Roberts stage 2 in the beginning of August. We are hoping to head down south prior and give our family a well deserved trip to Disneyland!!!!!

I am attaching photos of Roberts ear when it had the drainage, the back of the left ear now and after he split it. Not trying to be graphic, this is for other parents that go through this can see.