Evan Pics

This is Evan sitting at his new table and chair set. We used some of his Christmas money to buy it for him. If he is not interested in what's going on, it's impossible to keep him from "bailing" out.


At Grandma's House this past Saturday. Evan loves picking up his busy boxes. Here he has it on Grandpa's recliner. His new favorite place for the busy box? On the TV screen. With some effort, he will pick the busy box up and slap it up against the TV. We have been siging "No, play on the ground." Hopefully this is a passing phase.


Evan also loves door knobs. He knows that twisting the knob is the first step to opening the door. What he hasn't figured out yet is that in order to pull the door open, you can't be standing immediately in front of it. I'm sure that is just a matter of time, as Mr. Pooks is a pretty smart boy.


Just to give some perspective on the size of Evan's table and chair set. They don't look so big now, do they? (Jeremy has been forced to resort for desperate measures...I have moved our kitchen table into the office and have commandeered it for my "craft table")

Update

I think I'm in the dog house for not posting recently. It's only been 8 days! Life is pretty much same-old, same-old. No new Evan tricks. He has stayed healthy since his illness at the beginning of the year...I guess that's a pretty neat trick!

I've been busy trying to find a happy ending to our out-of-pocket medical expense woes. Twenty percent plus whatever exceeded the $5,000/yr limit on durable medical equipment (feeding and respiratory supplies) added up to $4000 and some change.

In the past, we have been able to accumulate enough expenses to qualify for a secondary medical coupon for Evan. Our family is on "spend-down" which is the dollar amount of medical expenses we have to prove to DSHS that we owe before Evan is issued a coupon. The coupon is usually back-dated several months and our costs are reduced significantly. For the past 3 spend-down periods, the person working Evan's case has applied a special rule called the "Sneed-Kaiser" which bases the spend-down on the child's resources (less on the parents') and cut the spend-down to a third of what it would have been. I was under the impression this rule could be applied to our family because of Evan's special health needs. Well, I found out that evidently in the past it was applied incorrectly--it can only be used if the child's resources would make another family member inelligible for a coupon. Since the spend-down starts over again at the beginning of Feburary, there is no way we are going to meet it...even with that $4,000 worth of DME. If there is a silver-lining to this situation, I guess it is that we don't have to "pay back" any of the assistance Evan received on the coupon in the past.

I next looked into switching Evan to SHIP (State Health Insurance Pool). Washington State Law allows insurers in the individual plan market to refuse to insure the most costly 8% of potential applicants based on answers to a standard health questionaire. If you get rejected when you apply for an individual plan, then you can get medical insurance through the state pool. The premiums are higher, but we thought it might reduce our out of pocket expenses. The first problem I ran into was that Evan needed to be rejected by the insurance company to be eligible. I would have to try and apply for a higher level of benefits through our insurance company--they would make us fill out the questionaire and chances are he would "fail." When I started looking at the plan, I saw that the deductable was lower, the out of pocket maximum was lower, but the premium was higher and there was still a 20% co-insurance. The life-time maximum was $1 million--lower than what his current insurance is (we estimate is is between 1-1.5 million out of his 2 million lifetime max). We decided that it would be better to stay on the current plan for now, rather than risk becoming "uninsurable" by any plan besides the state pool.

Finally, I applied for "Financial Assistance" through Children's Hospital. Evan though what we owe them is minimal in comparison to the DME, every little bit helps. Because Children's income limits are pretty generous, we do qualify for assistance through the hospital. Basically, they accept what our insurance pays as the limit of our responsibility--and this extends to the physician's medical group, the dental clinic, anything Children's runs. While I was talking to the out-patient financial coordinator, she mentioned transferring all of Evan's prescriptions to Children's pharmacy to cut down on medicine expenses. Half joking, I asked if they happened to do medical supplies. Well, it turns out there is a Children's Home Health. After a few phone calls, I learned even though we are outside their service area, we can have supplies UPSed to us. The only issue is training on the new oximeter we are getting, but Evan has an appointment on Wed at the hospital so the respiratory therapist is going to meet Jeremy to go over the instructions. We have rented the other equipment so long, we own it now.

We still have that large bill from our previous DME supplier to pay off, but at least we don't have to worry about any more surprise bills in the future. I am so thankful that Children's has so many donors that enable them to provide this help.

Finally...The Children's Appointments

Sorry it has taken forever for me to get to the summary of the actual appointments. I will try to be concise!

1) Audiology. This was a brief appointment to dispense new ear molds for Evan's hearing aids. Unfortunately, when the audiologist inspected the molds right before our appointment, she discovered that the lab had sent molds made with "short" extensions into the ear canal ("long" extensions were ordered). Evan's left side has enough twists and turns in the external ear to support the mold without extending much into the actual ear canal. The cartilage is much stronger and can actually support the aid. His right side (the more "CHARGE-y" ear) is another story--the cartilage is very floppy and the external ear has very few folds. There isn't much for the ear hearing aid to cling to unless the mold extends deeper into the canal. We have always had issues getting the right hearing aid to stay in (or not constantly chirp), which is unfortunate because that side actually tests with slightly better hearing. Because of more feedback on that side, the aid has been programmed with a lower volume setting to reduce feedback. The most recent set of molds did not hold the right aid in at all, so Evan hasn't worn it much.

The audiologist attached the new molds (the "short" ones). The left one fit fine. The right one appeared to be staying in OK, with minimal chirping, so the audiologist reprogrammed it to the target volume setting. That made it chirp more, but she left it because the "long" ear mold was on it's way. She also wanted us to try hearing aid tape (basically toupee tape) to help hold the aid on the side of Evan's head, thinking the mold might stay in better if the weight of the aid wasn't pulling on it. This lasted maybe an hour--so I would say not so much.

The new right mold came in the mail on Friday. As Jeremy was attaching it, he discovered a possible other reason for the feedback: there is a crack in the plastic tubing. The ear mold comes with a piece of flexible plastic tubing embedded in it, that you cut to fit. There is a tubing made out of a harder plastic that connects the hearing aid speaker to the mold tubing. This plastic tube doesn't get changed with the molds, and it is what is cracked. Jeremy covered the crack with a little piece of tape, and that helped with the feedback when Evan wasn't wearing it. Ironically, the "long" mold is maybe too long. It must be hurting, because Evan cried and cried when we put the right aid in. We will try again this week (maybe he just isn't used to the aid on that side).

I have been resistant to any surgical procedures to alter Evan's external ear. Mostly because Evan has been through so many surgeries already...surgeries that he hasn't had any choice. I want him to participate in the decision to pursue any "cosmetic" surgery. Partly also because I want Evan to know we think his ears are beautiful and we love them (and him) just the way they are. Partly too because I know surgery can only do so much to make the ears look symmetric, and it's still going to look like there has been surgery done. If that's the result, then I don't see the point. The ENT mentioned that a fairly minor procedure can be done to make the ear hold the hearing aid a little better. This we may consider.

2) Urology. Basically, things are stable.

3) Craniofacial. I had concerns that Evan's shoulder joints seemed weak to me (when you pick him up by holding his chest under his armpits, it feels like the shoulders are trying to dislocate...like there isn't enough muscle or ligaments holding them in). I wanted to know if an ortho consult might be a good idea (aside from the fact that CHARGE is known for scoliosis and other bone issues down the road). I was reassured that Evan's shoulders are OK...they just feel like that because he has "low tone." That assessment doesn't really sit well with me, but I have learned that pushing an issue with this particular provider doesn't yield the desired results. I'll just discuss it with our PT and Dr. Oldham. And other CHARGE mom's--you have seen photos and videos of what Evan can do. Does he look like he has any "low tone" to you??? He is very strong--legs and arms--he can pull himself up to standing and push things. He may have had tone issues in the past, but I don't think that is the problem right now. We briefly touched on the ear infection issues ("Are they draining???" Arrrggg...more on why this makes me cringe in the ENT section). I asked about testing to rule out choanal stenosis. Dr. Lewis thought it was not possible to have stenosis in the presence of a cleft, but she would leave that to ENT. Possibly Evan could have some underlying immune deficiency that makes him more prone to them. Dr. Lewis thought we should monitor things for a few months and then consider an immunology consult. She ordered some basic blood work to screen for an immune-system issue after I pushed ("He can't wear his hearing aids. This is the critical period for language development.").

4) Dietician. Cam was very pleased with Evan's "numbers." He grew another inch since age 2--at 2 1/2 he is 34 inches (50th percentile). He has actually lost weight at 25 lbs (he had been up to 27), but we think that was from when he was sick. With his weight and weight vs. height he is also at the 50th percentile. Evan has really thinned out in the past 6 months--from about age 1-2 years he was pretty chubby. Cam was happy to hear the blendarized diet has worked so well for Evan, and the only changes we are making is to add half a Flintstone's vitamin to each day's blend. We will also be gradually taking out the 1 can of Pediasure he gets with the day BD and replacing it with 8 oz whole milk plus 1 teaspoon flax seed oil. At that point, he will only be getting one can of Pediasure plus his water at night. His day feedings will be all "real" food!

5) ENT. This appointment was a little bit frustrating, to say the least. To start with, we waited for an hour to see Dr. Perkins (this was after we had already spent an hour waiting and seeing the other two providers)...long enough that we had to "reschedule" our nephrology appointment to the end of the day. We explained to Dr. Perkins our concerns about Evan's recurrent ear infections, and how it is really having an impact on him being able to wear his hearing aids. We got the by now very familiar "How do you know it's an ear infection? If it isn't draining [pus], then it can't be an ear infection?" By this point, I am getting a little ticked off because, we've been waiting so long to hear the same song and dance. I just said "Well, I don't know what to tell you. His pediatrician (who Dr. Perkins knows is a seasoned Dr., and knows what an ear infection looks like) says the ears are infected. When he is on the antibiotics, the infection clears up." Dr. Perkins feels that there is a myriad of possible infections a kid like Evan could get because his palate muscles don't work properly (because of the soft cleft--even though it's been repaired, the muscle fibers still don't function normally), because of his poor swallow there is probably aspiration. He reviewed a CT Evan had taken about a year ago and said that although he did show some narrowing on one side, it wasn't narrow enough to be stenosis. We talked about VitalStim and oral feeding (is there a connection between feeding and the "infections")--Dr. Perkins thought that the improvement Evan showed in being able to handle his secretions alone meant VitalStim was very successful with him. I almost got a hint of "this is sooo much better--what more do you want?." His recommendation was to keep Evan on the prophylactic antibiotics for 6 months, not feed him orally during this time and see how he does. He also wanted to repeat a BAER under anesthesia (the most recent BAER showed improvement with bone conduction, but Dr. Perkins thinks this is just "noise" in the test, not an actual improvement). He also wanted us to keep Evan as healthy as possible for the swallow study already scheduled for January 30th. He predicts Evan will still show some silent aspiration--it will be better than his previous study--but he still will not be "cleared" for oral feeding (the last study showed enough aspiration, we were told not to give any food by mouth...we've been bad).

6) Nephrology. Evan has been assigned a new provider--Dr. Symmons (Dr. Eddy, his previous Dr., got a big research grant and had to cut back her clinic time). In a nut-shell, everything looked stable...but the most recent kidney U/S was 6 months ago and they didn't have any lab results yet. We were advised to be very careful about the possibility of kidney infection (always get a catheter urine culture with any fever...which to be honest, if the ear looks obviously infected Dr. Oldham hasn't been doing), and told that Evan is 100% guaranteed to develop hypertension at some point during his life because the kidney is critical in regulating blood pressure and Evan has chronic renal insufficiency by default because only one kidney is present. Elevated blood pressure damages the kidney, so we want to keep an eye on this. Evan's blood pressure right now is normal. The fellow working with Dr. Symmons did most of the exam, and saw Evan was on prophylactic antibiotics when we reviewed the med list. He said, "That's between you and your primary care pediatrician," not without an air of you-know-you-are-promoting-antibiotic-resistance. (As an aside, we certainly do not have wide-spread antibiotic resistance because Evan is on them prophylactically, and it's not even because pediatricians over-prescribe them for pushy parents. It's because for years the livestock industry dumped antibiotics into cattle feed. That's where most of the resistance has come from. A little less soap-boxing would be appreciated.)

We got some lab work done (blood draws are never a good time for Evan, but he only needed 2 sticks to fill 4 tubes) and got some dinner. We left Children's around 6 pm. It was snowing at the hospital...not a good sign for the pass. It was snowing pretty hard on top (traction tires required for cars, trucks had to chain up), and it took longer but we made it home safely around 9:30. Evan was a very good boy. He happily clanked his puzzle pieces together all the way home.

Day Before Children's

(Editor's Note: This started out as a post about the appointments, but I started writing about the day before. Now it's late, and I am just getting to the "appointment" part of the story. I'll post about that tomorrow).

I promised I would talk about our appointment results earlier this week...but I didn't have time to get to it until tonight. Evan was seen by Audiology, Urology, Craniofacial, Dietician, ENT, and Nephrology. It was quite a day. As is typical for most of our trips to Children's, we spend a lot of time waiting around and didn't really change anything we are doing. At least we got some good shopping in the day before...

I really should start the story with our drive up on Sunday morning. It was beautifully sunny and the roads over the mountain pass were bare and dry. This was a nice change from the snowy/cloudy weather we've had the past couple of weeks. We stopped at the Cle Elum office to pick up a table to return to IKEA (it ended up being too large for where I wanted to put it) and a couple of other small items. I thought the receipt was on my desk in Cle Elum, but as we were loading up I couldn't find it anywhere. Since we were 30 miles from home already, we decided to just take our chances returning without a receipt (I just wanted store credit...how much of a problem could it really be???).

We arrived at IKEA, and of course the closest parking spot on a Sunday afternoon was the third parking garage out. Jeremy loaded the unwieldy box into a cart, put Evan in his stroller, and hike back to the store. As soon as we got to the returns department, I see the giant sign: "Returns or exchanges can only be processed within 90 days with the original receipt." Of course. We take a number and wait about 10 minutes. The young woman who calls my number is hearing impaired, and has bilateral behind the ear hearing aides (just like Evan!). Her speech is very difficult for me to understand (and there is lots of background noise in the store, so I'm sure I'm hard for her to understand as well). Of course I try to be very patient, because in my mind I'm seeing Evan in 20 years, doing this same job (Evan working at IKEA...how cool would that be?!).

I explain to her right away that I don't have my receipt, BUT I only want a store credit. Plus I used my credit card and I remember the exact date I made my purchase. She scans the items and says I can get back about $60 of my $80 (at least that's what I figured out she said later...at the time I thought she was saying something else), BUT she has to have the manager look up my receipt. They NEVER do this, but because it was a credit card AND I knew the purchase date AND an approximate total amount the search wouldn't be too long. She went to find the manager, who it turns out just left on break. She asks if we can wait 10-15 minutes for the manager to come back. Not wanting to haul the stupid piece of flat-packed, glorified MDF back to our truck, we agree. During this whole time, the return line has become longer...a lot longer. The manager comes back from break (after about 20 minutes) and our cashier approaches her. I see the manager make a face, shake her head very obviously "no," and call the next number as she opens another register. The cashier tells us the manager "was with another customer" (as if we didn't just see the order everything really did unfold...), and asks if we can come back "later." She suggests having lunch at the cafe...of all the places to eat around South-Center, the IKEA cafe is not on my top 10. I ask if 30 minutes is long enough and she says "sure" (are you as convinced as I am??).

By this time I am a little bit irritated (OK...more than a little. Images of whacking certain individuals with the previously mentioned boxed piece of furniture are dancing through my head). Since there isn't anything else we can do with the box, we head back out to the third parking garage. We reload the truck. I decide to call my credit card company to verify the date and the exact amount to make the receipt search that much easier when we come back. Earlier in the day, Jeremy had agreed to eat lunch at Zoopa, aka "the salad restaurant." If you aren't familiar, it's a cafeteria-style place with a giant salad bar, soups, breads, pasta. I like eating there. Jeremy not so much, but he had agreed to go earlier (and I guess knew better than to try and back out at this point).

Zoopa is very family-friendly. There are cute little sectioned trays for the kids, and they have wheeled high-chairs with their own little rack for the tray right by the door. You plunk your kid down and can push them along as you load your tray. The kids are at the perfect level to reach the rack the trays are resting on as salad is piled high...I cannot believe this was never seen as a problem BE (before Evan). Maybe most kids are distracted by the tray of salad hooked on to the high-chair in front of them. We removed the rack because we immediately saw Evan would have sent that tray flying--we're not idiots...we think about these things. Jeremy and I each have a tray. Jeremy is behind me, pushing Evan in the high chair. I had just finished going through the first salad bar and was moving on to the "prepared salads." Jeremy is putting the dressing on his salad, and I hear this "Evan, No! CLATTER-CLATTER-CRASH!" Let's just say Evan gave new meaning to the phrase "Ranch, on the side." One side of his face had ranch dressing, and the other didn't. Enough lettuce fell into the high-chair behind his back to make a small dinner salad. The floor was covered. Jeremy did not escape unscathed. Other customers are gingerly stepping around the scene of the accident to finish their salads. We were both mortified. Evan was pretty unfazed. The waitress was very nice about the whole thing. She got a new high chair for Evan, brought Jeremy a wet towel, and cleaned up the mess as she explained she had a 4-year-old at home. I waited for Jeremy to go through the line again, and then we paid for two adults. I'm sure the cashier thought we were trying to pull a fast one by not paying for a child's meal too (I guess after the whole tray incident we should have). The rest of lunch was pretty uneventful.

We headed back to IKEA (instead of driving around looking for a parking spot, we just went straight to the third garage), loaded the piece of "furniture" into a cart and went back to the returns department. All during lunch, we kept hoping the managers worked half days and the previous one had been replaced. I pick a number. The hearing-impaired cashier is still working. I'm not sure if I want her to help me again. A different cashier calls our number. As I'm wheeling up, I'm waving my credit card and blurting out that I don't have my receipt but I know that I spent exactly X amount of dollars on November 28th 2007 I'm sorry I don't know the time of day but they said the manager could look up my receipt if I came back later today and now it's later... He looked at me, scanned my items and asked if I was going to be spending $80 dollars that day so he could give me a store credit. I asked well don't you need to look up my receipt. He said if I wanted to, he could do it that way. I must have looked a bit bewildered, and then he realized what had happened. He apologized for the "inconvenience" (really?) I had experienced with my return and gave all three of us free meal vouchers at the IKEA cafe. I was just happy to see someone else have to wheel that box away. Then we actually went into the store to shop, and bought GUESS WHAT...a book shelf that came in three more of those big, unwieldy boxes (for our very good friend Julie). I think Jeremy and I have had our fill of IKEA furniture for awhile.

Day of Children's Appointments

Today was a long day of appointments with several outpatient clinics at Children's. We drove over yesterday (weather and roads fine) and just got back about an hour ago (snowing, roads on the sketchy side). I'll post a summary of clinic later, but I wanted to put up some cute pictures of Evan from today. He was busy in between appointments pushing his stroller around, signing "shoe" (or his version of "shoe"), and when the nephrology resident held out his hand to "shake," Evan actually reached out and "shook" his hand...pretty remarkable for someone who freaks out when you try to hold his hand.

Daddy, this is how you make the stroller go.


Sweet smile.


Crayon...it's what's for dinner.


"Shoe!"


Yeah...I did it!


Givin' daddy five (my little "5" is hidden behind his big hand)


This again...well, I guess I'll let you put them in if I have to.

Snowy Day

We woke up to more snow softly falling this morning. It has been snowing off and on all this past week. Gabe's family loaned us a sled, and we took Evan out for a short walk. He only lasted about 10 minutes. It has stopped snowing since then, so we will try again later this afternoon.

Evan can swing!

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Tag...I'm it

Amy (Max's mommy) tagged us for 5 things you don't know about me:

1) The only "foreign" country I have been to is Canada. Beautiful scenery, you don't have to learn another language, a favorable exchange rate...what more could you ask for???

2) In college, I was part of a research group that synthesized and studied the electrochemistry of Rhenium tricarbonyl compounds. The compounds luminesced (glowed) under a black-light, and the interest we had was in developing them as molecular sensors. Many of these compounds had never been made before (and possibly not since?).

3) I decided to apply to optometry school spur of the moment my last (5th!) year of college. I was in a panic because I had absolutely no idea about what career path I wanted to pursue after graduation (I kinda got burnt out on the whole research lab scene). Where better to procrastinate than graduate school? So I put in my observation hours, took the optometry admissions test, applied to three schools, and decided if I got accepted to one of them then it was meant to be. I guess it was...here I am 10 years later.

4) After one of our very first dates, Jeremy and I were watching TV on the couch at my place. I don't remember exactly how it came up, but Jeremy told me about a dirt-biking accident he was in several years earlier. He broke his right ankle, and had to have pins put in it. The "broken" side is thicker--not in an "Oh-my-God-what-happened-to-you" sort of way, but if you are looking the asymmetry is definitely there. I remember the thought going through my mind: "I don't know if I can be with someone who has an ankle that is bigger on one side." It seems really shallow--not to mention a little ironic--now, but at the time it was a legitimate concern. I made the mistake of confessing this thought to Jeremy a couple of years later...I don't think I will ever live it down!

5) I am left handed, but I use scissors and a computer mouse with my right hand (so in theory I can surf the net and take notes at the same time). If I learn how to do something first with my right hand, then it always feels awkward if I try to do it left handed, even though I am much more coordinated on the other side. For example, it took my right hand forever to "get" double-clicking...

I am tagging Julie C., Catherine D., Sheila A., Jen K., and Jenn M.

Feeling Better Today

Sorry I haven't posted in a while. Evan has been sick with a viral infection the past week. On New Year's Eve he had a temp of almost 103, which would go down with tylenol. New Year's Day he was still spiking fevers, and we were not able to get a hold of Evan's regular pediatrician (Dr. Oldham). Since it never seems very productive to take him to see someone new, we decided this wasn't so urgent he couldn't wait to see Dr. Oldham--who he didn't get to see until Thursday. He had an ear and respiratory infection (not RSV or influenza). But he is back on antibiotics, albuterol treatments, and today is the first day he has really seemed back to himself.

I haven't seen Evan this sick in awhile (although he is far from the frail little guy we brought home from Children's 2 years ago). All he would do was lay on the floor and whimper. He would cry if you picked him up, and would crawl off to the corner and sleep. He slept almost all day--he would be awake for 15-20 minutes, and then fall asleep for an hour to 1 1/2 hours, and then sleep fairly much through the night too. He wouldn't sit up. He wouldn't play with his books or busy-box or sit-n-spin...now that's a sick boy. We did find out about 3 days into his illness that he was constipated (now that has resolved, but he has some diarrhea from the antibiotics).

Anyhow, he seems better today. He was up spinning on his sit-n-spin, and banging his puzzle pieces on the TV screen. He did fall asleep about 10 min ago, so I guess all that playing wore him out. Amy (Max's mom) requested a picture, so here he is asleep:



Yesterday, we finally made a commitment to a yellow and painted our kitchen. I have had 4 different yellow splotches up on our kitchen walls for the past 8 months or so...we just didn't have the time (or inclination) to actually paint. Well, as a Christmas present from our families, we bought the paint and some crown molding for the tops of the cabinets. Looks pretty good, I think. It's hard to tell the color in the picture, so I changed the background on Evan's page to the new wall color.