Another Good One...

about a kid who is a little different: http://www.youtube.com/watch?v=Ek1iIOTsiRo

More Luke-isms

Luke is potty trained which is great. We heaped tons of encouragement on him to get him there for the boy is a bit slow to change. He’s picked up on that encouragement quite well. Now after you’ve helped him do his business, he looks at you and says what he’s heard us say, “I’m so proud of you.” Darling.

I know I’ve posted about Luke’s bent toward organization before. We were headed out somewhere and Luke knew I had a few things to do to get us ready. As he came down the stairs he had his hand up and asked, “Mommy, what’s next on the list?” I answered something like...packing our bag or getting shoes on. He pretended to be marking a box on his hand pad and said, “Check” loudly, then “Ok, now what’s next on our list?” Replying “Check” again after my reply.

Chris and I went to our our friends' wedding last weekend. What a nice time. We vowed to plan a couple dates - just us - in the near future! Julie and Ed...all the best! And family and friends...babysitting welcome :-)

How Should I Respond? Comments Welcome

I am so proud to be with Mitchell when we go out. I've learned to be up front with those we meet about his delays for their benefit. Chris and I have had a few awkward moments when someone new says something about wishing their child was more calm like Mitchell at that age, only to later feel uncomfortable about pointing out Mitchell being atypical. It's just easier for all if we break the ice.

I wish I was as comfortable about when strangers glance at Mitchell and say something like, "What a tired little guy" or "Boy, he's tired." Mitchell's eyes don't appear as often a blind person's eyes do, but since he doesn't absorb most of what he sees, he mostly looks down making him look sleepy. (Note: this does let you see just how amazingly long his eyelashes are!) How should I respond to a person's comments that he is tired when I know he's not? I have been finding it hard to let the comment go so I admit to being a little pointed responding, "He can't see very well so he looks down a lot." Since it's fueled by a tinge of bitterness, I know I've made people feel badly. They were trying to be nice.

Being in these situations makes me very attracted to families with a child with a limitation themselves. I am pretty conversational and in the moment feverishly try to think of something warm and appropriate to say. Something I'd want to hear myself because I now know that the world wants to avoid different or stare at different, rather than involve it. All but once or twice have I come up short. If I can't think of what to say, why should I think someone else knows the answer? Thoughts on this welcome.

Back at Children’s Hospital today. Mitchell had an OT visit at 8 am, a first-time audiology appointment at 9:30 am followed by a visit to radiology to get those hip and back x-rays done. Minimal wait time before each, hooray! We loved the audiologists. They were people of action. They did tests on the spot, at one point taking advantage of Mitchell having fallen asleep which was needed for one of them (an ABR). They generalized that the structure of his middle and inner ear is fine. From testing the left ear while Mitchell slept, they could tell sound traveled to the auditory nerve. They said that was great because they are sometimes not able to even perform the test on some children with neurological issues. What they are not sure of is how the brain processes the sound as it travels up from the auditory nerve. (If this sounds familiar, this is a lot like his vision issues – eye structured perfectly, but not sure what degree of sight the brain actually processes.) Although the test was not done on the right ear, we decided to hold off scheduling further testing until our next neurology appointment (in Feb.) as sedation would be ideal. A full ABR could be coordinated with any other tests requiring sedation.

I have been saying that hearing seems to be improving, my phrase is “more integrated”. Responses to sound are more consistent. We were given pointers of what to do during play/therapy time to help speech/hearing development. Overall, we were quite pleased with this visit.

New to You

Here’s something to do with your girlfriends especially if you are trying to stay out of the malls right now, but would love something new. I hosted an Accessory Exchange with the women managers at work. Attendees brought one or more gently used, of-this-decade pair of gloves, handbags, scarves or jewelry. They got a button for each item they brought. I was impressed with the high quality of the items. So many things I would have liked! The highest scorer on a “what not to wear” quiz was given the opportunity to go shopping first. From there, the color of your button(s) determined the order in which you were able to select accessories. Snacks, wine and storytelling of our own fashion emergencies were also part of the fun. Only a small bag of items remained that we’re passing on a donation center. Invite me to a swap and I’ll come.
Friend from work modeling many items at once.

And the Doctor Says...

We saw the first of 2 doctors today after an hour and a half wait! Yes, I said 1 and 1/2 hours and no I had zero patience for it. One of the docs we've seen before and her first reaction was, "Boy, he looks better." Nice start. She noticed 100% improvement in his neck control and saw that his weight bearing had also made some progress. She was concerned about his hips and back, wondering if his rib flare is turning more toward true scoliosis, and referred us to get an updated set of x-rays.

Also of concern to them, as it is to us, is that Mitchell's social skills are not very evident. We repeatedly say that Mitchell seems often unaware of the world around him. He doesn't reach for things or hold something in hand for more than a few seconds. No one's quite sure what he's able to see, so it's hard to tell whether how he is relates to vision impairment or something else. (How I love to say vision impairment instead of blind!) That said, although he is nonverbal he does love attention and music and finds ways to tell us that he's hungry, tired or wants to be held. He will also do some reflective voice sounds with us.

Therefore, we were encouraged to keep up and even increase the therapy we are doing, focusing not only on motor development, but also engaging Mitchell more socially. This would entail more games, use of switches and cause and effect play. Just when I was feeling like I'm not doing enough for my son, I'm told I'm not doing enough for my son!

We also will be getting a referral to see the Pearlman Center which is a program at Children's that focuses on children over 18 months with CP or other related disabilities.

Oh yeah, the 2nd doctor meeting Mitchell for the first time really only said 2 things...first that Mitchell is an incredibly handsome kid with amazing eyelashes (we know!) and second, as far as outlook, the only thing for sure is that we will be engaging in therapy for at least as long as he's in school. Duh, but we left actually encouraged because it was some of the most positively positioned expectation-setting we've been given.

Overall, Chris and I agreed this appointment refocused us on what we need to do for our son and encouraged our hope. Candidly, we have been a bit fatigued from all the disappointments, therapies and the demands of HBOT (which we decided not to mention to these traditional docs because they probably wouldn't have been on board.) My coping strategy for now is to keep putting one foot in front of the other until Mitchell's 2nd birthday around which I've given myself permission to have a big ol' cry! Only 2 months away ;-)

HBOT - Day ? Session ?

Chris thinks we are at or over 40 dives by now, but the technician counts us at 36-ish. It's easy to see how adding up the frequent and lengthy visits might be difficult. Likely we'll get a few more for the price we are paying. If we consider this just about the end of the journey, we have no remorse over having tried HBOT. If I don't sound more enthusiastic, I think we've had a hard time summing up the experience because Mitchell has been quite irritable the past week or two. Back in November he was like how he's been lately - fussy, hungry, tired with decreased interest in therapy type activities. Did I mention lots of spitting up? Ugh! Like before, we're attributing this to a growth spurt. Inside I'm so concerned that his growing pains come with real physical pain! Made worse by Mitchell not being able to communicate his discomfort to us. We did take him to his regular pediatrician and she didn't find an ear infection, fever or anything and sent us home to ride it out.

Once he completes all dives this week, the center tells us it's possible to continue seeing some changes as new cells do take time to develop. I know when Mitchie gets back to being himself, we're bound to see some differences. After all we did notice some things early on.

Mitchell sees a developmental pediatrician this week as well. She's one who sees kids with developmental issues exclusively. His was a PT before she became a doctor. It will be interesting to see what she observes about his development.

Left and Right

I ask myself a lot whether Luke really is a lot like me or whether I just choose to see the ways that he demonstrates my traits. Yes, he's organized like me - just today at the Museum Center, he lined up all the bulldozers in the sand in a very neat row. Yes, he's a bit competitive - fine when we're playing games but he'll even boast, "I win, I win" if he gets done washing his hands first when we're out together. He also goes to sleep at the drop of a hat. Well I admit to being more tired since having kids but that one is all Daddy!

Here's one way he is not like me at all and frankly it's really embarrassing. Luke has known his left from his right since he was 2. I didn't know my left and right until 1st or 2nd grade! No one showed me the little trick of holding up your left hand and seeing how its thumb and pointer make an "L" for left. In fact, in kindergarten I was terribly humiliated for an ENTIRE YEAR by my gym teacher's writing "L" and "R" on the appropriate toe of my gym shoes in permanent marker.

Anyway, of course I'm a proud mom all the time, but now you know why I'm especially so when Luke directs our driving course from the back seat. "Go right here, mommy...turn left...red light, stop!" At least his knowing his left and right will mean no scarlet letters on his shoes when he starts school. Although it is possible the way kids learn earlier now, he'll need to be doing quadratic equations then. And of course he's not there. Yet.

No Diagnosis

You know we focus on Mitchell not having a diagnosis. You are probably thinking, “Get over this already! It’s not that easy. A pediatric neurologist fellow shed some light on why this remains such a frustration for us. We asked him whether he agrees with what we’ve been told – that 30-50% of kids have no diagnosis. We said we are perplexed by this because after seen numerous therapists and connecting in person and online with parents, it seems that most developmentally challenged children have some sort of diagnosis. Mitchell seems rare. The fellow agreed with the percentage, but added even if a child doesn’t have an exact diagnosis, generally the child falls under a type of disorder. For example, docs may know a child has a mitochondrial syndrome, but not know exactly which specific type. They may know there is a chromosome deletion on a certain arm, but not know the specific gene affected. You can see how even a generality would help give parents direction and expectations.

So, I asked this neurological fellow. Does Mitchell look like a kid that has a mito or metabolic issue? (Tests have already said he doesn’t.) He said no. Next…does Mitchell look like he has CP? Again, no. No surprise.

I’m wondering what the percentage of kids who have absolutely no umbrella diagnosis, like us. Gosh it has to be small. Syndromes Without A Name (SWAN USA) is the only group we’ve seen to offer support to this group. Here’s a video that highlights some of the children across the country that like Mitchell are undiagnosed.

Chair...where?

Mitchell was fitted for a wheelchair over 6 months ago. At that point we were in disbelief that a chair would be needed, but understood that eventually Mitchell would outgrow most strollers and would need more support while sitting due to his hypotonia (low tone). Would you believe it takes 4-6 months to get a wheelchair once ordered? With that in mind our PT followed up at 3 months only to find the order was never placed. At 6 months both the PT and Chris started calling. After 10 phone messages were left, we knew there was some sort of problem. Then a letter dated December 19th showed up in January saying the firm with whom the order was placed is in receivership with Hamilton County’s common pleas court. Interesting. So today we met with Mitchell’s rehabilitation doc to start again. After not seeing her for 6 months, she thought Mitchell looked good. With her ok, we're now just waiting for the referral to the wheelchair clinic at Children's hospital.

Inspiring Story - Enquirer 12/27/2008

Blindness problems can't stop wrestler
Coventry senior "an inspiration to all"

AKRON - Neurologists and pediatricians told Debbie and Tony Gunter that their son suffered brain damage at birth and would never be able to take part in sports.

"Most of the doctors told us he'd never be able to walk or even talk, that he wouldn't be able to do much of anything," his mother said.

Jesse Gunter has surpassed those meager expectations. He's 15-1 on his high school wrestling team and has a 4.0 GPA, despite being blind in one eye and having only limited vision in the other.

Debbie believes she is witnessing a miracle every time he wrestles. "We never had the courage to dream that he could do what he's doing," she said. "He's an inspiration to all of us, especially those of us who were there when he was born."

It was a problem delivery. After 16 hours in labor, Debbie had an emergency Caesarean section. A few hours later, Jesse began having seizures. After numerous tests, doctors told his parents that their baby suffered brain damage. For three years, the Gunters took Jesse to neurological and pediatric experts who said there was little anyone could do. After moving to Virginia, they found a pediatrician who offered hope. "She just told us that whatever we do, don't baby him, treat him normal like every other kid, and he'll grow up to be like every other kid," Tony Gunter said.

Jesse is blind in one eye and has had two surgeries on his other eye to help stabilize it. But he has no peripheral vision. That ruled out most sports. "I can see a basketball, but the players in a game are a blur," Jesse said. "I can pitch a baseball toward a hitter, but I can't catch or field a ball. ... I was disappointed, but I didn't give up because I always wanted to do a sport."
The family moved back to the Akron area in 1996. He started wrestling three years ago as a seventh-grader at Coventry Junior High.

"The thing I love most about wrestling is that I can really push my body. My body can support me in wrestling, and it's a thrill for me," he said. He was 22-8 as a seventh-grader and 23-2 in eighth grade. As a freshman, he has a 4.0 grade-point average taking a regular academic schedule. In matches, opponents must maintain contact with Jesse. Jesse has ambitious goals. He wants to be a state champion wrestler and to compete in college and the Olympics. "I can't see, but I can dream," he said. "And I'm determined to live those dreams."