Walking Aid

Evan usually doesn't care to wear his hearing aid. He humors us when he's at school, and he might leave it in for a few minutes at home...otherwise, he wants that aid out of his ear! There is one exception to this rule.

Even though Evan can walk pretty well all on his own, he still loves to "finger walk" around the kitchen table with daddy. I think it must help ground him, or provide some sort of organizational input that he just doesn't get any other way. He loves it, and every day Jeremy and Evan make umpteen laps around the table. Evan is also very particular about the chairs being pushed all the way in--whether someone is sitting there or not.

Jeremy realized that during the walking was a great time for Evan to wear his hearing aid. His hands are busy, so he can't pull it right out. Evan has made this connection, and now instead of just pulling on daddy's hands to go walking he will actually go find his hearing aid and bring it to Jeremy. It's the cutest thing, and it's so exciting to us that he has made that connection.

Even neater still, Jeremy actually saw Evan getting his hearing aid earlier today. The hearing aid was on the floor in the middle of the hall. Evan walked down the hall, saw the aid, bent over at the waist, picked it up with a pincher grasp, straightened back up without wobbling (or using anything for support), turned around, and came back to daddy.

And he has figured out that with this trick, Jeremy will reward him with even more walking around the table. We were trying to eat dinner tonight, and Evan came over and tried to give Jeremy his hearing aid. All he got that time was the "wait" sign--not at all happy about that!

One Dedicated Tooth Lady!

Evidently keeping one blog up to date is just not enough for me. I also started a blog for the Ellensburg Lions Club a few months back (and I am co-author for the brand new Kittitas County Parent to Parent blog--it's not much to look at just yet).

So this is the one time I'm going to shamelessly promote the Lions Club Blog on Evan's Blog. It's called Tales from the Den (lions, tails, dens...clever, eh? www.ellensburglions.blogspot.com).

We had a speaker today, Christie W., who came to talk to our club about dental access in our county. I wanted to take a minute to talk about Christie, because her level of dedication is pretty amazing. One would not be out of line in nominating her for the Lemonade Award.

I will let you meander over to the other blog to read more about Christie's story. You can copy the link into your browser, or if you click on "My Complete Profile" (it's at the bottom of the sidebar on the right) it will list the other blog(s).

The Lemonade Award

Jess, who is Connor's mom and the author of Connor's Song (http://connorssong.blogspot.com/) just gave me the Lemonade Award--for maintaining a positive, upbeat attitude in the face of challenges, as in "when life gives you lemons, you make..."

I'm not sure if an acceptance speech is really warranted here, but... Jeremy is at least as deserving (if not more so) of the Lemonade Award as I am. In real life, my first reaction to things not going as I have planned is to get upset and be grouchy, until I have time to process it and sort out my feelings. Jeremy is always right there with me. He is the one that takes my initial reaction--all the while having to deal with his own--and we talk about it, and in the talking figure out what we have to do to get through the situation. I've come to realize when the two of us stick together, we can handle a lot. Maybe even a game of dodge ball played with lemons.

So who are my Lemonade recipients?

• Amy M., mom to Mighty Max
• Amy R., mom to Ben
• Rebecca A., mom to Nathan and Cameron
• Sarah H., mom to Caleb
• Catherine D., mom to Reuben and Callum
• Liz M., mom to Kaitlyn, Quinn, and Angel Corinne
• Lesley C., mom to Gabrielle, Olivia, Fleur, and Amelie
• Crystal M., mom to Alex, Bailey, and Eva
• Kim C., mom to Jonathan, Tyler, Cameron, and Christopher
• Kristi S., mom to Gracie and Preston
• Leslie K., mom to Katie
• Lisa W., mom to Kennedy (+ two older brothers), and Grandma to Taylor
• Shelly S., mom to Luke (+ three siblings)
• Marty K., mom to Maya, Addy, and Teya
• Corrie Y., mom to Peyton, Cy, Mary Catherine, and Tate
• Kristi G., mom to Dylan and Jonah
• Julie C., mom to Gabe and Kaia
• Chris N., mom to Burke (+ two more boys on the way!)
• Jennifer M., mom to Dylan and Angel Cedie

It's quite a long list...it's all the moms I can think of who I know are dealing with difficult circumstances every day. And while not every word that comes out of their mouths or is typed on their blogs is a ray of sunshine, they are being honest and real. Most importantly, they are making it work. I have learned something from each and every one of you--thank you for sharing :)

He's a Candidate

Dr. Sie thinks Evan is a good candidate for a cochlear implant! Jeremy and I are still in a little bit of shock--both of us thought for one reason or another, he would not be a candidate. The decision would have been made for us, and we would move on.

Evan's degree of hearing loss (severe on one side and severe to profound on the other) qualifies him for a CI. Dr. Sie reviewed Evan's MRI from December with us. Evan's cochleas are missing a turn on each side, but the portion that is missing doesn't contribute much to hearing sound. She confirmed he does have the hearing nerve on each side, and the facial nerve is where it's supposed to be to the point it exits the skull. In looking at the vestibular system (provides sense of balance), he only has one set of semi-circular canals and a tiny bud of a second set. Normally, three are present on each side and we had been told before he had two sets. All the more amazing he can walk now.

Dr. Sie told us even with a CI Evan would still almost certainly be non-verbal (we already knew this), but that it would be realistic to expect with the implant he could hear sound in the range of speech as well as enviornmental sounds. She stressed the importance of continuing with ASL, as this would be his primary expressive language.

Because Evan has tubes in his ears, he would be at increased risk for serious infections like menigitis. Also, there was a chance that the surgery could lead to increased facial weakness (from damaging the facial nerve during surgery). Dr. Sie felt both these risks were small in comparison to the potential benefit of the CI for Evan.

Jeremy and I have a lot to think about now--we have to make the decision.

Pictures from Today

Evan knew just what daddy's sunglasses were for. He insisted on wearing them upside down though--I tried to show him the "right" way, but he would just flip them over again. I think it might have had something to do with the temple ear bend being at an ideal chewing angle when the glasses were upside down.



This was a big deal--Evan walking into Children's. We have always pushed him in by stroller. He lasted through the first short appointment, and then Jeremy had to run back to the car to get the stroller. Not so much because Evan was tired of walking, but we needed him to stay with us while we ate lunch.


Waiting in the exam room for Dr. Sie. There was plenty of time for snuggles.



We stopped at the playground at University Village. Evan wasn't interested in playing, but he did want to walk around. The cute stick-figure face is from a store window.


Today in Seattle, it felt (and looked) like spring has already sprung...the flowers at the mall were so pretty.

Appointment with the Surgeon

Tomorrow is a big day for the Storrs Family. We have an appointment with Dr. Sie at Children's. She is the surgeon who would do Evan's cochlear implant surgery. This is the last appointment to determine if Evan is in fact a candidate for the procedure. We will review the results of the BAER, the CT, and MRI done in December.

I really don't know which way it's going to go. We do know that Evan showed some increased response on this most recent BAER with bone conduction, which is contradictory to all his previous tests. I'm curious if this could be another "summation" problem--there was one other time we were told Evan's hearing was better with bone conduction, and it turned out to be an artifact (the summation). Possibly, we could be told to try the bone conduction hearing aid with Evan again. We briefly tried one about a year ago, and it did not seem to help.

CHARGE is known for causing nerves to grow in atypical patterns. The MRI is to help the surgeon visualize where the facial nerve is, because if it gets damaged during the CI surgery that can cause a total facial palsy on one side. Jeremy and I have already talked and agree that if there is any uncertainty about the path of Evan's facial nerve, we don't want to chance it.

If Evan is not a candidate, then this will give us--or maybe just me--some closure. We will know we looked into the CI and will move on with ASL and Total Communication. In a way, I think it will renew my committment to learn more sign. I feel like I've been stuck in a holding pattern, waiting to find out if we can go down the CI road. It really shouldn't be that way--having a CI does not change the fact that Evan will always be Deaf, and I still need to know ASL. I should not be using the CI as an excuse...but I find myself doing just that.

If Evan is a candidate...that will be a new adventure, full of new doctors and new therapy.

I think I am at a point where I can be OK/not disappointed if it's a no. Things happen the way they do for a reason.

Fingerpaint Artist

Kiss Kiss

I would not consider Jeremy and I to be huge PDAers (as in "Public Display of Affection"), but we do kiss each other every day at home. Neither of us thought much about our little audience.

Evan has been all about kissing mommy or daddy lately--his version of a "kiss" is to push his forehead into your chin and rub his head from side to side. Yesterday, the three of us were sitting on the floor together. Evan pushed our heads together (it was more like mashing us together--he's not very gentle) and started giggling when we kissed. He did it several times.

We tried to get him to do it this evening, so Grandma could catch it on film, but no suck luck. The best we got was an "Evan Sandwich"--still pretty darn cute.

Moles

I have on occasion wondered about the evolution of a mole. Babies usually don't have any (birth marks, yes--but not actual moles). And pretty much every adult has at least a few. When do we get them? Surely they just don't appear over night.
I think I have an answer now, as far as when they first show up--age 3 1/2. As I was putting Evan's pajamas on, I noticed the tiniest mole under his left armpit. I asked Jeremy if he'd seen it, and he had not seen that one but had recently noticed one on the side of Evan's neck. Another first for the baby book :)

Enough about the "Octuplets Mom" already...

After over a week of reading almost exclusively negative media coverage, blog posts, and blog post comments about the mom of the octuplets born last month, I feel compelled to come to her defense. No one else is!

Let me preface this post by saying I truly believe it isn't fair to judge someone else unless you have "walked a mile" in their shoes. Least I be accused of hypocrisy, I'll be the first to admit I am guilty of writing judgmental posts (a post I wrote a couple years ago about Brittney Spears comes to mind...). I am not saying I haven't done it, just that I don't think its right.

Most of what we know of this woman and her family is courtesy of the media. In my experience, the media does not have the best track record for providing bias-free or even accurate information.

Do I agree with the choices this mother made, in terms of the size of her family? Of course not--I think she should have stopped about 10 kids ago.

Do I think the doctor who did the IVF procedure used his best professional judgment when he transferred 6 embryos, regardless of the number of previous children? After listening to some "expert" doctors on the news, evidently not. Other reports suggest--standard of care or not--the octuplets mom is hardly the first woman to have large numbers of transferred embryos "take" and result in high-order multiples.

Am I thrilled by the prospect of my tax dollars going towards the SSI at least some of these children will be on? That would be a "no" also. The bottom line is no one can afford the hospital bills for one of these children, let alone multiples.

The last time I checked, Evan was up to almost 1 million on his 2 million lifetime maximum with our individual insurance policy. Compared to some other children I know of who were preterm or have/had multiple congenital health issues, Evan was a bargain. I may justify to myself that we not being a drain on society because we had our own insurance policy, but what does that really mean? Essentially, the total bill was contractually reduced and remainder spread out over the subset of the population who happened to be other subscribers. We paid our premiums and deductibles, but what we got in return was much, much greater than what we have ever (or will ever) pay in. I may gripe about our insurance company sometimes (ok, quite frequently), but I do appreciate this fact. And for awhile Evan also had a secondary medical coupon (i.e. we didn't have to pay our deductible or coinsurance) and we are still receiving "financial aid" from Children's Hospital. I guess what I'm getting at here is that I don't think it's fair for me to criticize the octuplets mom for needing assistance/state insurance for some of her 14 children, when by myself I couldn't have even paid for my one.

I stayed up to watch the interview with this mother on Dateline the other night, and I was struck by her extreme naivety, in terms of the financial and social ramifications of her actions. She has been living off of student loans and food stamps! And she thinks consolidating her student loans is going to help!

I will repeat that I don't think she used the best (or even good) judgment when she decided to go for that last baby. But what's done is done. Bashing her doesn't turn back time, it doesn't negate that fact that there are 8 preterm babies, plus 6 older ones at home. Can she raise all these children without state assistance or having a nervous breakdown? Highly unlikely. But if we want to make sure that she can't do it--guarantee she will fail--then keep the pressure on her with media scrutiny. Make her feel the "love" by blasting her with constant negativity and threats. That's going to make a bad situation better???

If we weren't in a major financial crisis, this wouldn't have even attracted attention for more than a day. People would be like "Octuplets? Didn't someone give birth to nanuplets last year?" I'm not trying to make light of the serious nature of preterm and/or multiple births. But these babies--this family--in better times would not so much as raised the public eyebrow.

I think what upsets me the most about this whole situation is the mothers who I feel should be the most likely to have even the tiniest bit of compassion for this woman...they just don't. I find that really disappointing. And just plain sad.

Kids Castle--Here we Come!

Evan went pee in his potty chair 3 times this morning, to bring the total up to (drum roll please...) 25! So as promised on his "Potty Chart," we took him to play at Kids Castle. We took the chart with us, to help him make the connection between bathroom performance and the reward. Not so sure he understands how they are related, but he had fun anyway!

All About Your Firstborn

I had seen this survey going around on Facebook the past coulple of weeks. After reading about 10 of what I would consider pretty “vanilla” stories (apologies in advance--I know every mom's birth story is exciting and unique to them), I really debated posting my results this survey. I didn't have a typical birth experience. But I decided in the end that wanted to share, to show that even though things don't turn out the way we would have planned or hoped, they can still be OK. Evan is pretty impressive evidence of that.

Survey says…

1. WAS YOUR PREGNANCY PLANNED?
Sort of…one month of not not trying

2. WERE YOU MARRIED AT THE TIME?
Yes

3. WHAT WERE YOUR REACTIONS?
Disbelief at first. Most of my friends and/or family took several months of active trying to get pregnant.

4. WAS ABORTION AN OPTION FOR YOU?
No

5. HOW OLD WERE YOU
28

6. HOW DID YOU FIND OUT YOU WERE PREGNANT?
Two home tests (plus one Jeremy took as a “control” because the results I was getting did not look like either “+” or “-“ on the back of the box—thankfully, he was not pregnant…).

7. WHO DID YOU TELL FIRST?
Our parents

8. DID YOU WANT TO FIND OUT THE SEX?
Yes

9. DUE DATE?
September 11, 2005

10. DID YOU HAVE MORNING SICKNESS?
More afternoon/evening sickness

11. WHAT DID YOU CRAVE?
Subway and tacos

12.WHAT IRRITATED YOU?
After Evan was born, women who complained about being pregnant for “so long” and wanting their pregnancy to be over.

13. WHAT WAS YOUR FIRST CHILD'S SEX?
Boy

14. DID YOU WISH YOU HAD THE OPPOSITE SEX OF WHAT YOU WERE GETTING?
At first I wanted a girl, but early on I just knew we were having a boy.

15. HOW MANY POUNDS DID YOU GAIN THROUGHOUT THE PREGNANCY
At one point 58 lbs., and then lost 10 lbs the week before Evan was born.

16. DID YOU HAVE A BABY SHOWER?
One was planned for the last week of July, but I postponed and later cancelled it.

17. WAS IT A SURPRISE OR DID YOU KNOW?
I knew—I made the invitations!

18. DID YOU HAVE ANY COMPLICATIONS DURING YOUR PREGNANCY?
Just a few…
- A false positive for toxoplasmosis at 10 weeks—bad reagent at the lab, I was told. I declined all the optional tests (including the quad screen) from then on.
- Polyhydramnios, which is too much amniotic fluid—who knew the amount of fluid the fetus is supposed to be drinking would throw things so off balance?
- Really bad peripheral pitting edema
- Pregnancy Induced Hypertension
- Suspicions our baby had some type of syndrome, based on polyhydramnios and U/S findings at 30 weeks. I will never forget the silence in the room during our last 2 U/S—it spoke volumes.
- Preterm birth at 31 weeks and 5 days
- Evan was diagnosed by the NICU doctors with CHARGE Syndrome at 10 days old. He spent a total of 7 weeks in the NICU and 7 weeks on “the floor” in two different hospitals and had to have major abdominal surgery (3 combined procedures) before finally being able to come home with us.
- D&C 2 weeks after birth to remove “retained products of conception” (left over piece of plancenta).

19. WHERE DID YOU GIVE BIRTH?
Swedish Medical Center, Seattle, WA

20. WHO DROVE YOU TO THE HOSPITAL?
Jeremy drove me to Kittitas Valley Community Hospital the morning my water broke at 7 am. I was too early to deliver there, so I was transferred by ambulance to Swedish at 9 am. I was given meds to slow labor, and the plan was to be admitted to the antipartum unit at Swedish, and try to buy some time with total bed-rest. I happened to know the EMT who rode in the back of the ambulance with me—I jokingly asked him how many babies he’d delivered. He said “None—and we’re going to keep it that way.” Evan had other plans—he was born 2 hours after we were admitted to Swedish.

21. WHO WATCHED YOU GIVE BIRTH?
Jeremy, the attending OB, 2 residents, the Labor & Delivery nurse, the anesthesiologist made a brief appearance, and the NICU team (I think there were 4 of them—the neonatologist, 2 NICU nurses, and a respiratory therapist).

22. WAS IT NATURAL OR C-SECTION?
Natural, but vacuum assited

23. DID YOU TAKE MEDICINE TO EASE THE PAIN?
No. By the time the doctor’s realized how far into labor I was, there wasn’t enough time for an epidural. Then Evan went in to fetal distress, and they had to get him out. The OB resident was nice enough to tell me they’d put “something” in my IV—thankfully the placebo effect is pretty powerful.

24. HOW MANY HOURS WERE YOU IN LABOR?
6 1/2

25. HOW MUCH DID THE BABY WEIGH?
3 lbs 1 oz

26. WHEN WAS YOUR CHILD ACTUALLY BORN
July 15, 2005 at 1:38pm

27. WHAT DID YOU NAME HIM/HER?
Evan David Storrs

Our family was blessed with a happy ending—Evan is the most beautiful, active 3 ½ year old little boy, and does something to amaze us every single day. He will always have challenges due to CHARGE syndrome (he is Deaf and has some developmental delays). His early arrival did not do him any favors, but he managed to avoid some of the many problems associated with premature birth. Not all babies are so lucky.

More Adventures in Potty Training

OK--I freely admit I'm a little "stuck" on this topic. But I'm absolutely amazed Evan's progress. He really seems to "get" the concept of peeing in the potty chair. Evan has 12 stars on his chart now, and we started the chart about a week ago! He knows when we go in the bathroom what I want him to do--and he usually does now. Sometimes mommy isn't quick enough with getting the diaper off, but I'm not complaining. Keep up the great work Evan--we'll be going to Kid's Castle in no time (that's the reward for getting 25 stars)!