The Best Says...

We are already recieving the best care in regard to Colin's ear. Turns out, our doctor spent a few years training with the doctor here in the Bay area, who said he really felt that our current ENT doctor has done an excellent job. He had a few recommendations for further revision but really thought that we were on the right track. It's good to have a professional affirm that we have made a good decision in regard to our choice in doctors. It has brought some peace of mind.

The kids are having a blast and I have a ton of pictures that I'll post once we return. It has been a busy, fun, busy, exciting, busy, busy week.

I've been neglecting my blog.

No idea why. Just have been. So this post will be a schloo of updates.

The main man doc from Cali e-mailed me back. He is very interested in taking a look at Colin to assess the situation. He may provide the same answer as our current doctor, but it will be peace of mind if nothing else. Now we have to work out insurance logistics...ugh...and figure out when to schedule the appointment. We already have a visit scheduled with my Dad in July, so that'll probably be it. Hate to wait that long, but obviously can't really just take off to Cali. I'll cancel the May 1 surgery for now...and figure the rest out later. Never got around to calling local docs for a second opinion yet, still on the to-do list.

I have lots of cute Easter pics, I'll post those tomorrow. The kids of course had a wonderful weekend and the holiday itself was great.

Chloe is adding word after word and finally says Ma Ma!!!!!!! Yippee! So happy. She also says a dun (all done) and pup up (puppy). I love it. She is so sweet.

I haven't actually started working yet, but tomorrow is supposed to be the day. Wish me luck!

Second Opinions, ENT.

So, I've contacted the best-of-the-best, who happens to be in the Bay area, minutes from my Dad. What are the odds? I sent him pics of Colin's ears, etc. earlier this week, but haven't heard yet. I think I'll make a quick call later this afternoon to be sure that they were received. Colin's pediatrician also gave us a few numbers, so I'll spend today calling them to get their histories with microtia. I think the Cali. doc without a doubt will be #1 on our list. I've heard and seen a lot of great things he's done. Amazing rib graft reconstructions. A picture never lies...isn't that what they say?

ENT Recheck.

Colin had a 6-month routine recheck with ENT today.

Finding #1: The tube in his right (unaffected) ear has come out. In its place is a hole in the eardrum. Causing the doctor to sarcastically term him "one of the lucky ones." Don't know why, but that comment is really sitting with me this evening. So, we have to be extra cautious to be sure no water enters the ear. We'll take time to see if the hole begins to repair itself. If not, he'll have to have it patched. Not sure what else this entails or details of danger...still have to look into all of that and talk to some folks. (Alicia, any input?)

Finding #2: His affected ear is settling back closer to his head and causing concern for possible infection, similar to the fall before Chloe was born, which landed us a few weeks in the hospital on IV antibiotics to ensure he didn't lose his rib graft and skin grafts. I had my suspicions about this heading into the appointment. It has become increasingly difficult to clean back there and I had noticed the skin becoming much softer. Soooo...as of right now, we tentatively have another surgery scheduled for May 1 to again take skin from his leg and have it grafted behind the ear to allow more room for air to get back there so that the skin is able to breath, thus lowering the risks for infection.

But, in the meantime, we've decided it's time for a second opinion as well. So, I'll be making some calls to have another doctor from a different hospital, maybe even state, take a look at the work that has been done and help us decide next steps. And, we'll be bathing Colin in hydrogen peroxide from now on to avoid infection. Just kidding...just a little on the ear twice a day. Honestly.

I hate the decisions. They never get easier and they never go away. They make my heart and mind ache. And, once again, so much for a routine appointment. I really should quit prenaming them as such, huh?

Too dangerous.

"In short, I think atresia surgery on Colin would be too dangerous especially with regard to his facial nerve," wrote the best of the best. Pretty close to the exact wording our doctor used as well. And, obviously, I wouldn't dare to put my boy in danger, so why am I still having such a difficult time accepting that it just isn't possible to provide him with natural hearing on his left side?

I knew that it was a long shot. I really trust our current doc. I guess I was just hoping that the "best-of-the-best" would see something more. sigh. It's not even the end of the world. He has great hearing on his right side. So, it isn't possible. It really and truly isn't.

Lord, grant me the serenity to accept the things I cannot change. I am having a hard time with this one.

Back, Ears, and Teeth...Oh, my!

Next Thursday's appointment has set my mind a rolling. I've been trying to educate myself as much as possible on congenital scoliosis and the use of braces. Thought I'd share some of the information I've found so far:

>>The general rule is that bracing is ineffective for congenital bone malformations of the spine. An external brace can not correct or even support a spine that wasn't formed correctly in the first place. A brace does offer some support to the muscles and soft tissue for those extreme cases of kids who have neuromuscular disease or are unable to support themselves in a sitting position. A brace tends to be more work and frustration for parents and patients than its worth. Another thing rare situation is that long term bracing in very young kids can cause underdeveloped ribs. If the bones in the chest are not able to have free movement (in and out with breathing) they do not fully form. The in and out motion is what makes them mature and become solid bones.<< This information was received from a support group that I belong to, please keep in mind, that the information is not from a medical expert, but from a medical mom who has become quite an expert, her son, nearly 12, has undergone many surgeries for his CS, including VEPTR surgery, which is something we may consider further down the road with Colin.

>>Bracing is rarely used in congenital scoliosis as the primary treatment. Bracing has never been shown to profoundly change the pattern of abnormal growth that results from most vertebral malformations. It is sometimes useful to brace secondary curves that result from the congenital malformation.<< from iScoliosis.com. It also added that a brace may possibly prevent a curve from continuing to increase. May possibly.

So, I'm still not sold on rebracing. The rib issue is something I would really like to address if the topic represents itself, especially since Colin is primarily an abdominal breather...meaning that he tends to use his abdominal muscles to assist in breathing, especially when his breathing is labored.

I finally got all of Colin's CTs and MRIs, along with pictures of him and his most recent audiogram (hearing test) sent off to the perspective doctor in Virgina. I have been praying hard that as he examines all of Colin's information, he will see promise for opening his inner and outer canal on his affected side. This could provided him with complete or nearly complete or partial hearing on that side...any of which would be excellent. Our current doctor thought he was a candidate early on, thus the 4 outer ear reconstruction surgeries. Once the day came, he said that Colin's ear canals haven't grown at a significant rate and that he felt the canals were too close to the facial nerves on his left side to permit opening. But, this VA doctor is supposed to be one of the top two in the nation. He's done many, many of these repairs. I am praying he sees something different.

And, of a totally normal kid nature, we head to the dentist this month as well. Just for a cleaning, which I am sure our fruit-snack lover is much in need of.

Back on track.

This week ends our spell of appointment-free weeks. With all of the free time over the past few weeks, ha, I've been focusing on being more goal-oriented about finishing my coursework. For those of you unaware, I am once again in school! (surprise, surprise) This time, I am taking online courses to become a medical transcriptionist, something that, aside from Colin's issues, I know nothing about. But, it is a job that I can do at home to provide a little extra income. Thus, the lack of blogging! Something had to go! But, I'm back. I'll try to be more dedicated to updating. Honest. And, thanks to those diligent friends of ours who let us know you really are reading it...feel free to post here as well!

Colin received his second report card of the year and all is well, especially after realizing he missed 12 of the 55 days this quarter. I think he's trudging right along at a great pace. He had his first visit to the principal's office last week. He has been pushing the limits both at home and at school lately, which is fine. A phase, I'm sure. His crime: crawling under his desk after being repeatedly asked to stop. The funniest thing is, his teacher told him to take a walk to the principal's office and when he got there, to decide if he was ready to go back to class and follow her rules...if not, he need to talk to the "man." Colin chose to talk to the head honcho. (I personally think he was being nosey and wanted to see how the big man spent his day.)

He still will only wear the BAHA sporadically, which is fine. I still have my heart set on this super-dooper, one of a kind doc to open his canal soon anyway. :) If not, then we will push it a little harder. To that note...I am having all of his CTs and MRIs sent this week to said doc, along with profile pics of our boy and audiograms...time will tell. This amazing man has agreed to take a look at all of his information, FREE OF CHARGE, so that we don't have to make a special trip for a visit until we know if he truly is a candidate. Blessings, little blessings!

Next week we head back to orthopedics with the new ortho. doc to re-x-ray and see if his curvature has changed, thus determining if he'll return to wearing his brace 24-7. Please pray that things remain unchanged and that I find guidance to make a good decision about what to do next if they don't. I really don't think that the brace has made a difference for him in the past, and the research I have done tells me that this is typical, and I'm finding it hard to follow the advice of our ortho. docs...I honestly don't hold the most confidence in any of them. We lost our primary doc to retirement a year or so ago, and nothing has felt right since. His treatment has changed entirely, along with their speculations on where it will go over time.

Chloe took her first unaided steps yesterday! Colin was ecstatic! He wanted to "practice" again with her tonight. So funny and cute. She has also taken to sitting in his lap at any given opportunity. He loves it. She loves it. I love it. It usually ends with her applying a good smack to his head before toddling off to find something else to occupy her time, but it is so darn cute, if at least for the moment.

And, for those of you unable to view the video below: Chloe has said "Dad" forever. It is the only word she says consistently. But,now, when prompted to say "Mom," she replies with a determined "uh, uh!" She knows what I want to hear; she's just not ready to satisfy my Mommy craving in that way yet. Such a little diva!

Missing little ears and dimples and such.

This morning as I checked Colin's back after he woke (which by the way, still looks great), the realization hit that the little sacral dimple he had, which sat a few inches above his bum, is gone. It was removed during his spinal cord release surgery. It was actually caused by the dermal sinus tract they found after the went in to release his cord, so when the incision was made to remove the tract, it removed the dimple. Something, as strange as it sounds, I will miss. I had grown quite fond of it. Just one more part of my baby that has changed. I miss his little ear everytime we hug. I used to rub my lips on it when we cuddled and rocked at night and I have actually cried a time or two or three over the loss of that soft little ear. So, I cry for things I miss and am saddened by the scars my baby will always bare. My little soldier and his war wounds.

We're on the way to BAHA!!!

It looks like the BAHA is a go. Colin was a little nervous when they first attempted to attach it; I think the doctor and I weren't clear enough on what to expect for him. Once she showed him how it vibrated, using his finger, he was all for it. As soon as they got it on, he smiled really big and sat up really straight. Then Chloe giggled behind him and he flipped around to her and exclaimed, "I think I could hear her from the whole way up in our attic now!" Pretty cool. He's really excited about it.

The doctor explained the following to him (and me): once we receive the BAHA (2 to 4 weeks) we will have a soft band for him to use. The hearing aid is about the size of the tip of my thumb (1/2 and inch or so) the band will temporarily keep it in place for him. It sort of looks like the cotton head bands from the 80s. A surgery would then be scheduled if he is happy with the sounds he is hearing. They will surgically anchor a small button to his skull bone, which has a small button (basically the size of a snap on baby clothes) into which the hearing aid will snap. I thought the idea of another surgery would freak him out, but he automatically went into question mode...can he take it off to sleep (yes), can he wear it in water (no), will the surgery be long (no...in and out of the hospital most likely in a day or so). She asked if he thought he would be interested in getting it done. He immediately said "sure." He's so grown up, and I am so proud.

Now, we just have to work through the insurance logistics, but it looks like Colin's world is going to be a lot louder from now on. Pretty exciting.

Chloe as always was an angel the entire trip! What a blessing they both are to me.

BTW...we all miss Daddy!

BAHA...sounds like a retreat.

Let's hope it is a treat at least. We head down to Children's tomorrow to have Colin fitted for a BAHA (Bone Anchored Hearing Aid). Hopes for reconstructive surgery to correct his atresia (closed ear canal) and possibly provide him with more complete hearing were crushed after an MRI was done in the Spring. The inner and outer canals are too narrow and if surgery was done, after scar tissue build up, we would be back where we started. So, we are looking into have a surgery done for a semi-permanent BAHA.

The doctor has warned us that kids Colin's age often don't like the BAHA's. I guess hearing through bone-anchoring is a lot different than what we're used to, not to mention it will make everything sound ten times louder to him, but we are hoping for the best and that he sees a remarkable difference with it. We may be able to try it out tomorrow and see what he thinks. I'll keep you posted!

We headed to Masontown Sunday to see Jeremy. It was a nice visit once we got there...needless to say we were hit by a Harley on the way. NICE! Everyone was fine. Thank the Lord!!! Even the riders of the motorcycle. Traffic had stopped abruptly in front of us, and unfortunately the bike was following to close behind and was not able to stop on the freshly paved asphalt. Luckily he was able to lay the bike down before impact and he and his passenger were both fine. We arrived two hours late, but we arrived nonetheless. Safe and Sound!