Tuesday, November 27, 2007

He's a happy hearing boy!

(peas in a pod, these two at the zoo.)

It has been one week since Ethan began hearing with his 2nd implant. He's doing really well and seems to be adjusting slowly but surely. He still protests each time we put it on, but it's very short-lived and he has not been removing it at all.

The new processor has very low settings right now, so we know that he isn't able to hear nearly as much with it as his first implant, but I'm already noticing him turning to sounds in the house that he would have previously ignored. I can see subtle changes in his attention and the fact that he is responding by turning his head to these sounds is a very good sign.

We've seen a lot of reflux in recent days. Ethan doesn't let it get to him too much, but he has several moments each day that have looked tentative and he has actually thrown up a few times as well. (I can't get the smell of vomit out of the rug, do you have any suggestions?) We haven't seen his reflux flare for this many days in a row since he has been on prevacid. I can't help but wonder if the new implant is somehow involved in the problem.

E-boy's balance looks much better today than it did one month ago. I can't tell you if that's just natural progression for him or if the new implant is at play here, but it's exciting to see these shifts. He now has the ability to run and is trying his best to learn how to jump. Aunt Audrey recently said to me "One day we didn't know if he would ever be able to walk, now we can't keep up with him!"

Ethan said his first consonant sound on Thanksgiving! His dad was the only one to hear it, but he said the letter C! Rich reports that he made the sound a few times, so we've been working on it all week in hopes of hearing it again. Whenever I tell one of his therapists about a new sound of Ethan's, I hear myself saying "who knows when we'll hear it again since he's so inconsistent." It's odd to me that these little pieces of progress don't stick in his memory, but that's a hallmark of verbal apraxia according to what I've been reading lately. How do you get it to stick?

So that's a wrap...I'm working on expanding the photos on this blog so stay tuned for more cuteness.

Wednesday, November 21, 2007

Activation Day: Redux

(with Misha at the zoo)

Rich and I assumed that Ethan’s 2nd implant activation would likely be very similar to his first implant, that it would be anti-climactic and even a little uneventful. We decided that Rich would stay home and work and Misha would go with us to the appointment.

First our audiologist (Lisa) put the magnet and earpiece on Ethan’s new side. He tore it off immediately! I think we got him to settle down by breaking out the cookies as all the toys we presented were just emphatically hurled to the floor. Within a few minutes Lisa powered up the equipment.

Ethan had no response to activation last year. In fact, it was 4 long weeks before he seemed to notice any sounds in his environment. His brain had never heard or interpreted auditory information, so we waited patiently for the neural pathways to do their job.

This time he started crying upon stimulation. It was one of those heart-wrenching cries when they sort of hyperventilate and moan simultaneously. He cried real tears, something I’ve only seen a handful of times in his life. I have to say that it was really tough for me (and Misha) to remain calm and collected. I wanted to shout, “Stop right now!” “Turn it off, he’s in pain!”

But Lisa assured us (and I trust her completely) that she wasn’t doing anything that could be painful, he was probably just shocked and afraid. That processor has come off and been put back in place about 15 times since then and he has consistently had the same reaction. Fortunately it's short lived as long as we have a distraction in place. Elmo can take him from screams to smiles in just under 5 seconds. He’ll then go about business as usual until that magnet falls off and has to be put in place again. That’s a pretty clear indicator that his reaction is based on fear and confusion, or just plain irritation, rather than pain.

Lisa has said that older kids who go bilateral complain about their new “ear” in the beginning. There is a definite adjustment period and they have to be patient because the new ear will take months of mapping sessions and trainings to catch up with the first ear. This can’t be reasoned with a 2 year old however.

It’s going to be quite an adventure I think.

Monday, November 19, 2007

Activation Day!

I've just finished packing our bags for the big day. Tomorrow Ethan will have his new cochlear implant activated! We plan to take him to the zoo afterwards since the weather should be gorgeous and the hospital gives out free passes to patients and their families.

This time last year I wrote a post about our trip to the zoo following an audiology appointment for the first implant. That day at the zoo was the first time that Rich and I saw Ethan react to sound, so it was pretty emotional for us. I can't believe that one year later Ethan has the gift of hearing with both ears, it's just amazing. We have so much to be thankful for!

Friday, November 16, 2007

Response to a reader...

This post is aimed specifically at addressing some thoughts brought to my attention through a recent comment on this blog.
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“i notice the ommission of any contact with an ASL specialist or a Deaf individual - just wondering if u forgot to mention that or if this expertise is not considered a part of your warrior plan?”

(Referring to the sidebar)

The battle plan so to speak is a dynamic document, one that is always changing to reflect the barriers Ethan has overcome. ASL has been an integral part of the plan from day one. I don't mention it in the sidebar, for no particular reason other than we don't have any "experts" working with him in that area. Unless you count "Signing Time" dvd's, which are life-changing for some of the kids that I know.

We don’t have any contact on a regular basis with a specialist or a Deaf person. We used to have an ASL interpreter (who became our friend) visit our home once a week to teach us, but she has been traveling most of the past year and was just home briefly before leaving to travel more. We live in a very small and geographically isolated area and have to drive significant distances for nearly all of Ethan’s services. There simply aren’t deaf people here. We’ve only heard of one other deaf person and he is now a sophomore at NITD. His parents are hearing and we’ve yet to meet them – even though I hope to someday learn from them as they raised their son with sign.

Ethan signs quite a bit (his vocab is nearing 200 words now) and actually has an affinity for ASL. We absolutely encourage it and are inspired by it. Currently he’s fascinated with the alphabet and can sign several letters. He attends to signing much more than he attends to voice at this time. And he is guiding this ship believe me. We’re all for continuing to learn and use as much ASL as possible and would love to see him embrace deaf culture someday if given the chance. (We’ll likely have to move at some point down the road…) I’ve written about ASL a handful of times if you check the archives.

"i was amazed to see some of the special ed teachers actually cry at IEP meetings - they were worried about his future because he is different - i looked across the table at them - saw their CARE for my son but also saw that it was very PATERNALISTIC and wrapped in PITY - he doesnt need PITY - he just needs a fair shake at things"

Your son has teacher's that are so invested in him that they shed actual tears at a meeting? Do you know how rare that is? Praise be to God!

“i wish u all the best in your quest and i hope at some point u will feel it is less of a battle and more of a journey - i imagine it is very tiring and exhausting otherwise and u r in it for the long haul”

You are absolutely on the money with this observation. I think my terminology lately is just representative of what mode I’m in on the space/time contnuum of parenting a “special needs” child. As you know from your own experience, it's especially intense in the early stages while you are getting those labels identified. We’re not in love with the labels either, but they are the only way to guarantee services or funding. I’m realizing that it most certainly is a journey and that your presence of mind and mental attitude shapes the reality for not only you, but your child as well. I’m in “battle” mode at the moment because I’m facing another new label, and you know how defensive that makes a parent feel. It’s a process; there are stages and I'm moving through them.

“enjoy ur ethan - he is precious”
"peace"

This is good advice – and I totally do. Peace to you, too.

Wednesday, November 14, 2007

Battleplan - Phase I


Today was my big day of making my case to Ethan’s local pediatrician and it couldn’t have gone more smoothly. I needed her signature on the test requisition forms for the labs I want to have done on Ethan, so I thought I might have to really make a case and do some convincing. I approached it like a business meeting and drew an outline for the points that I wanted to cover and the strategies to employ in case of resistance. She was more than open to my ideas, she was receptive and excited. I made copies for her of each test that I’d like to have done and she was eagerly reading them and thanked me for the copies. I showed her the book that I’ve been reading titled Healing the New Childhood Epidemics by Kenneth Bock, M.D., and she wrote the title and author down and said she’s very interested in learning more. I have the test kits and will send them to the lab hopefully next week, and then we’ll have to wait for 2 weeks to see what the results are. I really have no idea of what to expect from the results, but I imagine that we’ll learn something new about Ethan’s body and take the next steps towards healing.

We are using The Great Plains Laboratory, Inc. and so far I’ve been mighty impressed with their customer service. You can easily reach someone via the phone and leisurely ask your questions and get them answered. Many DAN! doctors work with this lab and they have an outstanding reputation.

Here are the 3 we’re starting with:

Organic Acid Test (not to be confused with The Electric Kool-Aid Acid Test) – This is the most comprehensive test of overall health that we could do, it’s a good starting point as it checks for vitamin and mineral deficiencies, neurotransmitter metabolites, yeast/fungal metabolites, and fatty acid abnormalities among many other things. And my favorite aspect of this test is that it just requires a morning urine sample. Easy!

Food and Inhalant Allergy Testing
This will be the most illuminating I suspect. When Ethan was in pre-op getting prepared for surgery, the nurse asked me if he had any food allergies. I replied that I thought he might have intolerance to milk and soy, but that I wasn’t sure if they were actual allergies. She asked me to describe his reactions to these foods and upon hearing my description replied, “oh honey, those are allergies”. This tests for 95 foods. Once we know the real picture, we’ll adjust his diet accordingly. I’ve been very interested in trying the gluten and casein free diet, but I think I’ll wait until we get these results to make those changes. We’ll have to go to the local hospital to get blood drawn for this one.

Metals Profiles
This is another simple test, as it requires only one strand of hair. I’m not overly concerned that Ethan might have elevated levels of metals in his body, but I have a feeling that we will be surprised by what we see. Many kids who are on the spectrum of developmental delays have impairment of the natural detoxifying process of sulfation. If that’s the case with Ethan, it’s imperative to find out and deal with the problem to avoid damaging neurological consequences.

So there it is, in a nutshell. I may be coming across as an anxiety ridden and worried mother, and maybe that’s partially true. But it’s important for me to find ways to treat Ethan’s symptoms in a holistic manner and get at the root causes of his behaviors and diagnosis. Too many of the people that have worked with him are specialists and it’s a little myopic for me to say the least. They are great at what they do, but I’m tired of treating symptoms with drugs like prevacid, which Ethan takes every day and has for 1.5 years. It’s time to get to the bottom of the root causes and treat them carefully and as naturally as possible. Then I think we’ll see some significant improvement.

Thank you Sandra for pointing me in the right direction.

Friday, November 09, 2007

Bring it on.

(creepy, but sort of fitting picture isn't it?)

I’m just going to take the liberty of purging with one more downer post. Then I’ll stop complaining for a spell. Because after all, we've got so much to be thankful for! I never forget this beautiful fact.

Here’s the thing: Ethan is probably (I think definitely) apraxic. That is, he’s likely got a new diagnosis on the way of a developmental apraxia of speech. It’s a neurodevelopmental disorder that can be very serious. I’m in that mindset right now of facing a new foe, in full on warrior mode. I mentioned the possibility of apraxia awhile back and could barely deal with it then. Now I’m feeling resigned and ready for battle.

It’s extremely complex (for my pea brain) and I’ll share what I am learning more in future posts, especially as we have a true diagnosis and take steps to deal with it in therapy. I’m ready to request that Ethan’s local pediatrician sign off on some labs that I would like done so we can get a very clear picture of the biochemical state of Ethan’s gut, of his food allergies (such as milk, soy, gluten), possible malabsorption issues, vitamin and mineral deficiencies, etc. My research (from medical databases and experienced parents of apraxic children) shows a very strong correlation between apraxia and the health of the gut and intestines. So the hope is that fixing the gut will thereby fix the brain. I find it interesting that this is the same path that many parents and doctors of autistic children take to heal their children, and on paper Ethan shares many characteristics of autism.

Once the local pediatrician is on board with running these labs we will map our course. It’s nothing radical or experimental, just diet and supplement changes. We’ve already started the fish oil after many weeks of reading about brands and types of omegas. I’ve also found a new vitamin recommended by parents and DAN! (Defeat autism now) doctors that I ordered online this week.

One thing is for sure, we are prepared and ready to do battle and we’ve got one smart and strong-willed little boy fighting right along with us.

TGIF

Rich has been working in Manhattan this week and returns late this evening. Thank God! My mom came up to stay for 2 days and we had so much fun. Then a very dear friend spent the day with Ethan and I while we drove 3 hours each way to sit in waiting rooms and doctors offices. That trip is always exhausting, but having a fun companion along makes a huge difference.

Mom got to witness the ineptitude that we deal with regularly living in a small town while trying to get Ethan’s needs met. It is getting beyond frustrating. The clinic where he attends weekly aural rehabilitation took him off the schedule for the remainder of the quarter, which ends Thanksgiving and doesn’t start again until January. I had told them we’d take the week of surgery off and see them the following week and that somehow translated into no therapy for the next 8 weeks. And this is a university. A place that should see Ethan’s case as an extraordinary opportunity, it is a teaching clinic after all. I have been uncharacteristically quiet about sharing my opinions about this place, but I’ve reached a new level of disbelief this week. It’s a rinky-dink dog and pony show over there masking itself as some sort of learning community. And do you think anyone took responsibility or apologized for the failure?

While we were at the hospital Wednesday I decided to have Ethan’s frames adjusted as they have been smashing his face and looking terribly uncomfortable. The technician took them into a back room and moments later came out and informed me in a very casual manner that they had broken. Oh well. It took several minutes of me asking questions to clarify what had just happened and what the next steps were. Just as it happened at the clinic the day before, I spent several minutes engaged in handholding people through doing their jobs. It’s surreal to be your child’s advocate while simultaneously being your own customer service rep. I had no choice but to buy a new pair for him since it takes our local shop 2-3 weeks to get the same frames delivered. He gave us a 50% discount, so I saved $100. There should be a sign on the door proclaiming “Frames adjusted at your own risk!”

I was reminded this week that I need to take care of myself once in awhile. I let all sorts of stress get to me and I tend to internalize. Maybe turning it into blog fodder will help a little, but I think some exercise and yoga are in order here.

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Edited to add:
I want to give props to the students at the university clinic where Ethan has attended therapy for the past year. The students have been so open minded and easy to work with. Ethan has also had a phenomenal supervisor of students in the past, but she is currently on maternity leave.

Monday, November 05, 2007

Phew!

It has been almost one week since surgery and Ethan is doing so well. The site of the incision is still pretty tender, but that is the only thing bothering this guy and it's mainly just a problem at night. He has been tossing and turning throughout the nights trying to get comfortable. The surgeon wanted him to wear that blue bandage during the night, but Ethan won't keep it on for more than a few minutes at a time. I think the purpose is to pin his ear against his head to keep it from sticking out as they sometimes do after this surgery. His other ear sticks out just a tad, which suits his situation rather well since it holds the ear piece and his glasses.

He has been too sore behind the ear to wear his glasses. He hasn't worn them since the surgery and I'm hoping that it won't be a big battle getting him back into that routine. Speaking of his eyes, we found out that he won't need surgery for a few months. That was welcome news as he needs time to adjust to having another ear and all the mapping sessions that entails over the next few months.

We're also happy to see that Ethan's balance seems to be unaffected by this recent surgery. That was a concern our surgeon had all along since we have no research on the affect of bilateral implantation on small children with motor delays. He's very sure on his feet, even without the benefit of corrected vision.

I have been knee-deep in reading and thinking about diet and supplement changes for Ethan. We're about to make some big changes around here.

Have a good day everyone.