Man, this ESD thing is going to be a quagmire, I can tell already...

Thankfully, the local ESD was very prompt in getting back to me. I made the first call to them on Monday and received two calls back on Tuesday. Here's the problem:

She's almost school age. So, even though at this point she is in the "Early Intervention" age group, by the time they work through their backlog, she won't be any more. Then, once she turns 5, she'll be considered school age and she needs to get a referral from the school in our boundaries. You know, the one we're not going to send her to? Apparently she still qualifies for assessment and then possibly services, but I have a bad feeling that by the time they actually GET to her assessment, school will have already started. If we are going to get her a hearing aid, at this point it's likely we will have to do it through her doctor. The same one that said "go through your local ESD." And heaven only knows if Kaiser/CCN will cover any of it. They aren't exactly known for their flexibility on that front, you know?

The very nice people that I've spoken with at ESD also told me that whether or not she receives a hearing aid from them will be determined likely on a sliding scale based on 'need.' (meaning that people with fewer economic resources are first in line for assistance.) Well, we're very fortunate - we have economic resources. So, the bulk of the cost will likely fall upon us. This after her surgeries, which were MOSTLY covered, but not 100%. Ouch.

I just can't help but wonder how long this will take, and if we are going to have to circumvent the ESD's assessment process so that she can have an aid and be accustomed to wearing it by the time school starts.

So, we have another decent-sized hill to climb.

On the healing front - her scalp thing is mostly healed. We're having a heck of a time keeping the dressing on the one last spot that's not quite healed, but we're working on it. It's actually looking really good for the most part. Still can't tell if hair will grow there.

So, the pictures - Kelley and Ryan started playing with this box that I got from Costco. You know, you can spend $1000 on toys, and there's still nothing quite like a box. The first picture is them playing in it, the second is Kelley "flying" in it, (she called it her 'Box Plane.') And the ladybugs have started showing up on our neighbor's trees, and Kelley just can't stay away from them. I call her The Ladybug Whisperer. :)

Really bummed today.....

Kelley had a hearing test today, and although she has shown improvement, her doc is recommending that she get a hearing aid through the local ESD. He estimates that she is at a 40% loss on the surgical side. (She's fine on the other). Starting K in the fall she's going to need to be able to orient where sound is coming from as best as she can - and a hearing aid is the best bet.

Upon reading through the ESD website, I'm feeling a little overwhelmed and sad at the prospect of having to navigate my way through all of it. We don't see her as different or needing any "special" considerations, and it feels like a kick in the gut to be referred to ESD. I know that they provide a range of services and they are there to help, it's just a painful reminder that we have a unique situation.

The alternative is another surgery where they take her middle ear bones out and replace them with a titamium implement to try to impove conductivity. There's no guarantees that it will do anything for her, though, plus we would have more surgeries.

Ho Hum.

WAAAYYYY TOOO LONG.....sorry for the delay

Life has pretty much returned to normal around here. The healing has gone extremely well, and Kelley ear is looking more and more normal (as far as size is concerned) all the time. She's able to wear sunglasses and they stay on. It's the little things, I tell you.

She has had one complication recently that required a call to the surgeon. At one of the incision sites on her scalp where they took a graft, we noticed that there was a scab - a pretty significant one. We didn't think it was anything major, and that it would heal on it's own - like when you fall of your bike and skin your knee, you know? Eventually it goes away.

Well, someone that we know and love (*ahem*Kelley*ahem*) picked on it. That's when things got interesting. It started this strange oozing and whenever we went to look at it or do anything with it, like brush hair away from it - skin would come up. It was enough of a concern that we took a pic and sent it to Dr. Reinisch. He called back almost right away, and advised that we do something called a "damp-dry dressing." Basically, he said that we need to get a small piece of cloth gauze wet, apply it to the site and the ooze (pardon the expression) would adhere to the gauze. We were to do this about one hour before bed and then again in the morning. When we take it off, he advised that we should do a "hard pull" which meant that it was ok to just basically yank it. It was interesting because doing that ran counterintuitive to what you would expect when caring for a wound. Usually a scab is a good sign.

Well, apparently on the scalp, it would forever ooze and make a scab - skin would never really form on the site. So, with every "hard pull" it was actually healing the site. We've been at it for about a week now, and it's getting much better. And once again it blows me away how patient she is with it. She actually almost holds still. Of course, she can't TOTALLY stand still - that's asking the impossible of her. :)

So, the pics are ones that we took about a week ago - you can see that she swelling is pretty much gone, her hair is growing back, although I doubt she will get hair on the site that we are doing the dressing on - I think that will always be hair challenged. Still, it's not going to be noticeable because her hair is pretty long. Kelley also graduated from preschool a few weeks ago, so I added a picture of that event. And Ryan....in the last month he has started crawling, going from sitting up to crawling and back to sitting up, and he can pull himself up to a stand. Crazy kid! We're in TROUBLE. The last picture is one that Kelley took of him showing off his standing up skill.

That's another thing - we cut 3.5 inches off of her hair last month. What a total relief. It's SO much easier to deal with now. It made her look so big & grown up.

Dr. Reinisch will be in the Portland area sometime in the summer visiting his daughter (she works at Nike) and said he would take a look at that time and determine whether or not she will need additional refinement surgery.

I will post pics tomorrow of what the dressing site looks like in the morning. Thanks, as always for reading and checking back with me about this (Jodi-shout out to you for nagging!)

Cheers, friends.

Karen & Crew

A long awaited update..no picture warning this time!

Healing is going just fantastic. Life is returning to normal around here - which is so nice. Kelley is assuming all of her normal activities, except for swimming at this point. She can submerge her head in water, and bath time is normal, but she's not ready for a swim cap. She needs a swim cap because during her lessons she is learning to put her face in the water and when she comes up for air her hair is in her face. It interrupts the learning.

So, we're thinking that this summer she can start up with swimming again.

Last week we were saying goodnight, and she was feeling an area behind her ear that still has scabs on it. She asked "Why do I have crusty skin back here?" I explained that it was kind of like a chrysalis - that the scab is protecting the new skin growing underneath. Butterfly skin. She liked that explanation.

Her tummy scar looks fantastic, too. You can hardly tell that there was ever a cut made.

Ryan has had a big week - a tooth, his first cereal, almost crawling, and learning to put himself to sleep instead of using me. Our focus has shifted somewhat because of that, and honestly I think Kelley is having to adjust to not having all the attention on her now. We've had some struggles with that this last week, actually. She's getting better all the time, though.

The pictures are ones that I took last Sunday (April 15) and this Sunday (April 22). When she is looking directly at the camera her ear looks amazing. We are really happy with the results so far.

Again - all your thoughts and prayers and support has been amazing. We are blessed.

Cheers all!

Sorry for the long delay in updating...(pic warning)

The first two pictures that you see are just to not freak anyone out. I wanted to show the progression of her post-op improvement, but not make anyone sick! The second picture is one that Kelley took of me and Ryan. :)

What a crazy week last week.

So, we ended up having to do the liquified hematoma drain AGAIN on Thursday. It started to fill back up. Papa Gene to the rescue once again. This time, however, the draw was only 6 cc's (a little over a teaspoon). Once again she was really brave. No tears, only questions about the blood pressure cuff in the room with us. Papa Gene took Kelley's blood pressure while I fed Ryan after the procedure. She thought that was really cool - she had her own BP taken, then Papa's, then mine. Thankfully, we haven't seen the hematoma blood return.

So, Friday saw us at the end of the rope with the bandage and the ear cup. It kept slipping off, the adhesive on the ear cup was coming apart from the cup itself (but, of course, staying tightly glued to her head & hair) and everytime I came near her to try to fix it, she freaked. So, we got a hold of Dr. Reinisch, who said that she could be bandage free, and we set about taking all that junk off. What a trauma. The adhesive from the ear cup was REALLY stuck to her head, and she was really scared. We tried baby oil to loosen it - not much help. We tried a little spirit gum remover - bad idea. It stung. Finally, after an hour and a half of crying and screaming, the hair was washed, dried, and the bandage was off.

We were instructed to use hydrogen peroxide daily on the ear, and that the left over dried blood and stitches would start to dissolve. She wasn't a fan of the peroxide at first, but she's gotten used to it now. She has even started participating in clean up. I think she kind of likes the bubbly thing.

We had our first little OH! scare moment on Monday - apparently she got bumped pretty hard at school. It was an accident, but it sounds like it hurt and it probably scared her a bunch. She recovered ok, and now when we comb her hair in the morning she is telling me that she likes her ear, that she wants to wear her hair in a ponytail, and that she wants to wear earrings like Mommy. She's very open about it, too - she'll show your her "surgery ear" if you ask.

So, the pictures are of the Friday hairwashing/bandage removal,(1,3) then Sunday evening hairwashing, (4 & 5) and now today. (6) You can see that she actually has an abrasion/owie from where the ear cup adhesive was. I can't tell you how much it stunk trying to get that off. I actually had a little crisis of "Was this the right thing to do for her?" John talked me down, like he usually does.

We're amazed at how good it already looks. Tuesday was 3 weeks post-op. So, life is slowly returning to normal around here. It's interesting - this has been something that we've been anticipating for her entire life, and although we aren't completely finished with this, we're working our way forward, and looking to the future of her life without this looming. It's kind of a strange feeling, actually.

I stumbled on a quote the other day that I love - it's been a little bit tough on occasion looking at the scars and incision marks on Kelley's head & tummy. (And leg from her canalplasty skin graft last summer) I can still picture her ear area before any cut was made. It's been bothering me a little bit, like I mentioned before, and then the other day I came across this quote that I want to share:

"See how the flesh grows back across a wound, with a great vehemence, more strong than the simple, untested surface before." ~Jane Hirshfield

Thanks for reading!

Spoke a little too soon...

On the whole "life returning to normal" thing. Remember the fluid I mentioned in the previous post? It's BAAACK. We noticed on Monday that the fluid seemed to be collecting in one spot on her upper incision on her scalp - not near the ear. There seemed to be more, as well, so we called for Dr. Reinisch. Bless the man - he took a call on his cell phone from a ski slope. He recommended we have it drained.

Thus began my Tuesday. I had a little trouble getting through to our pediatrician due to a LARGE miscommunication with me, him, and an advice nurse. I was looking for a recommendation on who should do the drain, and suffice it to say that didn't quite happen. We turned to Papa Gene. So, after waiting for a few hours to talk to someone at the peds office, only to be told they couldn't help me - we trekked it on down to the OHSU School of Dentistry where my Dad and one of his colleagues took care of things.

Once again, my daughter was a trooper. Dad and Dr. Ewick numbed the area with some topical cream, gave her a shot of local, and then drew out 15 cc's of old blood from her head (that's the equivalent of about 3 teaspoons.) Apparently it was a "liquified hematoma." Not urgent, but not exactly a good thing, either. Kelley didn't cry until it was over. She just kept asking about the defibrillator in the office. She was massively curious about how it worked and why.

Unfortunately, the pressure bandage my Dad put on came off during the night last night, and we noticed today that it seemed to be filling back up again. Dr. Reinisch's surgical partner, Dr. Lewin, told us not to get too worried about it, but to keep an eye on it and we may need to drain it again. We're going back to OHSU tomorrow so my Dad can look at it again and decide whether or not it needs another drain.

I haven't had a chance to e-mail Dr. Reinisch about all this, but I'll be very interested in his response. In the meantime, I did actually get to speak with Kelley's pediatrician, who apologized for the miscommunication and did give me a name or two of surgeons who could help. In retrospect, I should have contacted Kelley's otologist (ear doc) to begin with. Oh well. Live and learn.

I decided to spare you all gory pictures of a lumpy liquified hematoma today. Instead you get a happy picture of my three favorite people.

More updates soon.

An impromptu hair washing this morning

Kelley's bandage was once again not working very well, so we decided since it needed replacing anyway we'd wash her hair. We got an opportunity to see her ear again. It's remarkable how much the swelling has gone down. John and I were really glad to see how good it's starting to look.

We did have a question this morning, however, that facilitated a call to Dr. Reinisch. While John was washing her hair, he noticed some fluid build up in her skull - up high where she is shaved. It's a little scary because you can tell it's a decent sized fluid build up, but thankfully he said that it wasn't anything to be concerned about and that her body will just resorb it. I'm very thankful that we don't have to take her in for any drainage catheters and such.

So, we've fashioned a new way for Kelley to wear the bandage - John made it similar to a headband, and he used the spirit gum adhesive to secure the bandage to the ear cup. Now we've relieved the itching problem, the massively tangled hair problem, and it's staying in place pretty well. It's certainly a relief for her. Plus, it's made it so that the looky-loos (people staring) have much less to stare at.

Life is returning to normal around here. Hooray!