Auction anyone?

In the spirit of holiday giving and such, I thought it was an appropriate time to hit you all up for attending some auctions. 

We have two to choose from this year so I will give a brief description of each and let you check out the link if you are interested in attending. Myles and I are going to both. 

Please feel free to forward this information onto your friends and family also. The more the merrier! 

Listen and Talk

Elin receives speech therapy sessions once per week with this organization. They have been instrumental in helping us adjust to life with a deaf child and also through hearing aid use and cochlear implant surgery. Our therapist drives to our house every week from Northgate saving me immense amounts of time and frustration.

Winter White Attire - February 21st 5-9:30 pm Mountaineers Program Center at Magnuson Park

More information in the attached PDF invite

https://vimeo.com/listentalk/soundpossibilities

Kindering

Elin receives her PT, OT and vision therapies from this organization. She also attends a coop preschool here once a week. Kindering and it's supportive team have played an immense part in helping Elin and our family cope with all that life has thrown our way.  

Elin and I were featured in the "inspirational" video that they used last year and I have been told they are using it again. So if you haven't had a chance to see it, this would be a prime occasion to do so. 

February 28th 6-11 pm. Grand Hyatt Seattle

https://kindering.org/getinvolved/events/auction/

Peek a boo ICU

This year we are thankful for the amazing doctors and nurses at Seattle Childrens Hospital. Unfortunately we had to spend our Thanksgiving in the hospital but we recognize how fortunate we are to have such a fantastic facility so close to us.

Anya has been sick with a cold and pink eye so we were doing our best to keep her away from Elin but the germs were determined and they found their way into Elin's body. She was coming down with a cold and started to get pretty fussy Wednesday afternoon while my parents were taking care of her and Myles, Anya and I were at a Mary Poppins play. When we got home Elin's eyes were getting red and she was very upset and acting unlike herself.  A short time after, Myles told my mom he thought she was about to have a seizure and sure enough she did. She wasn't coming out of it so he gave her the rescue medicine (midazolam) but still no real change. The medics were on their way and he gave her another dose without any luck. She continued to seize and her breathing was becoming intermittent so they loaded her into the ambulance and rushed to SCH.

Upon arrival she was still having a seizure despite being given another larger dose of midazolam in route to the hospital. She was taken to the large ER room and there was talk of another IO (drill into the bone IV) since they weren't having luck with the regular type of IV. I made my opinion known that I did not want her to have to have another IO and it had to be a last resort for me to consider it.  I was not interested in watching them drill into my child's leg again. Thankfully, they were able to get an IV in her arm and the IO was avoided.

We weren't as lucky with her breathing however. Since they had loaded her up with so many benzodiazepines she wasn't breathing voluntarily. They had a bag and mask and had been breathing for her but since she wasn't coming out of it and doing it on her own they had to intubate.  This was the second worst thing we have had to watch happen to our baby. They temporarily paralyzed her so they could insert the breathing tube. She was limp, unresponsive, seizing and not breathing; pretty much a deadly combination had we not been at the hospital.

After she was intubated we were moved to the PICU for the night. We were told that when she woke up and fought to have her breathing tube removed they would make sure she could breathe on her own then remove it. She woke once at 12 but wasn't opening her eyes so they wanted to wait until she was more cognizant. She spiked a fever of 103 in the early morning hours so she was fitful and we were concerned about another possible seizure. At four she was really coughing and rejecting the tube so they took it out. Her IV was blown so they had to stick her again and it took about three tries in different spots to get a good vein. She was breathing on her own and fell back to sleep for a while.

The next day, Thanksgiving, her fever was being controlled with Tylenol so we monitored her and
tried to make her comfortable. She had tested positive for a virus, had pink eye and an ear infection. Her throat was raw from being intubated and she was not easy to console when she was awake. We were eventually downgraded and moved to the medical unit. One saving grace was since she had a virus we were in isolation. Normally you wouldn't think of this as a positive however we got our own room so that was excellent news.

Since she was stable Myles was able to get away for a couple hours and surprise his family and Anya at his sister's house for Thanksgiving. He returned to the hospital and brought me some leftovers so I was able to have a few bites of turkey. Elin was taken off her IV and she would drink milk but cried every time she had to swallow. Poor thing!

The private room did provide a quiet sleeping environment and all three of us got a pretty good nights rest. Friday morning we were ready to leave and were told by the doctors, nurses, attendees, neurologists, and others that we would be discharged in a matter of hours. That was at 10am. It's now 4pm and we are still here. We are hopeful to leave before 5 at this point.

So Thanksgiving did not turn out to be great or even good, but we are thankful we have our little girl with us and that is worth celebrating.

Hola Mexico

For Halloween this year the girls were She-Ra (Anya) and a ladybug (Elin). In case you don't remember, She-Ra was a 1980's cartoon character, the Princess of Power, and twin sister to He-Man. Anya has been watching old cartoons on You Tube after she asked me what I use to watch as a child- she was hooked and decided She-Ra was her ideal princess this year. Both Myles and I have some experience as He-Man and She-Ra from a Halloween years ago- (BC- before children) so we could easily recreate a costume in a smaller version. My mom helped with the sewing and the end product was nothing less than fantastic. We went trick or treating with friends in Newport Shores and Anya scored more than one full size candy bar- cha ching!

Bright and early the morning after Halloween we flew to Puerto Vallarta, Mexico. Our flight left at 7am so I do mean EARLY!!!

Our original destination was Cabo, but after it was hit by the terrible hurricane our timeshare (and much of the city) remain under construction.  Our travel companions were Susie and Karl and they have the timeshare hook up so Karl was able to get us re-booked in two lovely condos in Puerto Vallarta. Alaska Airlines even changed all our tickets for free and didn't charge us extra even though PV is farther than Cabo.

The trip was lovely but got off to a little rocky start when Miss Elin had a seizure in the airport as we were leaving to get our rental car in Mexico. Thankfully she came out of it and we didn't need to use her emergency medicine. We had the airport doctor/nurse check her out and give her some blow by oxygen. She seemed to be acting like she normally does after a seizure so we opted to just get to our condo instead of head to the hospital. She recovered after about an hour and the rest of the trip was smooth sailing with her.

Her little incident did leave all of us a bit on edge the entire time though. Plus we didn't have cell service so if Myles and I went out by ourselves Susie and Karl wouldn't be able to reach us if anything happened. What in the world did we use to do before cell phones? I don't know how I could survive without mine now having a medically fragile child. Sheesh.

Anya had a blast and was swimming like a fish by the end of the week. She was also asking when happy hour was so she could have drinks in the pool- like mother, like daughter. Elin loved the pool too and wore her waterproof CI in the pool everyday. Based on the amount of stares we got, we assume they don't see a lot of CI's in Mexico.

It rained a bit more then I would have liked but it was warm and beautiful most the time so I can't complain. Myles and I had some amazing massages on a pier overlooking the beach and got some much needed R&R. Travelling with grandparents is the only way to travel (if you need to bring your kids with you). Susie and Karl played with both girls and Myles and I were able to get quality one on one time with each of them as well. Elin liked her one on one with us at 6 am which we didn't really appreciate but it extended our days so we could get more in.

We took some day trips to Sayulita to check out the town and play in the surf. Anya spent hours in the ocean swimming, floating and getting thrown over waves by her dad. All and all the trip was a major success and everyone returned home happy and rested.

Things I've learned

I was thinking about all the things I've learned over the past two years. Having a child with special needs has broadened my perspective in so many different areas it really has astonished me. I wanted to list some things- more for me to have to reflect upon years from now, but also as a reminder of what we have right now. Some are classic "feel good" stuff and others are meant to be funny- not mean.

Things Elin has taught me.

My deaf child wakes up to any noise just like all other children. (this is just not fair!)
Kiss your kids to sleep every night, and hug them every morning.
Relish in the little things
Be present, be kind, be gentle
Hugging has replaced any desire I had for her to say Mama- it means so much more from her.
Don't ever underestimate someone
Never stare or point at people's differences
She can reach indescribable decibels in the car.
Trust my gut-always.
Life isn't fair- but it's good
Focus on what's important- everything else can wait

Things Anya has taught me.

A sister's love is unconditional (unless you steal her barbie)
Don't take anything for granted
Write down the hilarious things she says, because I will forget them.
Play with her even when I have other things I need to do
Be silly
Watch what I say about other people, she is listening and learning from my words.
Trust her, she is good
Always hug her when she asks for more hugs- some day she won't anymore
Tell her how much I love her everyday
A 5 year old's idea of fashion is questionable, but if she won't freeze, let her wear it.
Patience!- the child moves like molasses

Honorable mention: My dad was babysitting and this blog post was open on our PC. He decided to add his own list. He didn't want me to post it but TOO BAD DAD!

Things BobPop has taught me:

Unconditional love, but he hasn't needed any conditions since I'm perfect
He was right about everything
Men do get more handsome as they get older .... and smarter
He thinks about me, the children and my family all the time
Hamburgers are a food group
Children need a silly grandfather. I never had one.
He loves me.

(my addition- it's really cool having a dad that's a musician!)

Good (bye) summer

Our summer was fantastic! We spent time away at the cabin, on the Rock N Roll (my parent's boat), and down at Susie and Karl's in Gig Harbor.

The weather has been spectacular and our family has been thriving in it. Anya had an amazing summer at Kelsey Creek camp, Skyhawks soccer camp, and Bellevue College camp. Elin had a couple small breaks from her weekly therapies so it was nice to just relax and not have to keep a schedule.

We spent five days at the cabin with our good friends the Freemans and everyone had a blast. 80 degree days meant lots of swimming and beach combing and forest play. The crab catching was lackluster this trip but we made up for it later. The dads were there for two nights and then the grandmas came up to help Kate and I manage the 5 bohemians.

Myles took some time off work this summer and the four of us headed up to the cabin for a short "family vacation",  The weather wasn't terrific but it made us stay inside a little more and hang out- which actually was a good thing. This was the first vacation we have taken as just us four. It was fun to interact as a family for five days. We are a pretty cohesive group!

Next we spent a few days aboard the Rock N Roll. We met my parents in Anacortes, and headed to Sucia Island immediately. The car ride up was not the best (at one point I sent a text saying I need a yellow sign in my car that says, "Caution, deaf child screeching." Elin doesn't like the car..... or basically anything that confines her- stroller, coats, hats, etc. We always have a binky in her mouth when we are driving anywhere just to quiet the screeching a little. I seriously think my ears are going to bleed sometimes. You might think, well that's because she can't hear. WRONG!!! She makes this terrible noise with her CI on and her hearing aid- so yes she can hear herself, granted it gets worse if they are off. I digress.....

Once again the weather was spectacular. The next day we headed to Deer Harbor on Orcas Island because they have a pool we can take the kids to. We spent several hours that afternoon with Anya and Elin in the pool. After that we had to drop Myles off so he could go to work on Monday and stayed the night at La Conner. Up early the next day we headed down the Swinomish Slough and got all the way to Kingston. It was 85+ degrees that day so the long haul was nice and cool with the breeze. Anya found a stage in the Marina park and put on a show. No confidence issues here. Yikes- check out the video.



We finished our summer off with a weekend down in Gig Harbor at Oma and Opa's house. We swam, went wake-boarding, and Myles even got me to go salmon fishing with him.

As far as health goes- we have had a nice quiet streak. Elin hasn't had any seizures since July 7th (knock on wood) and she has been progressing physically and cognitively. She has mastered getting herself back into a seated position from her belly and crawls all over getting up on her knees a little. We had her fit for a gait trainer (walker) last week and hope to have it by November. She responds very quickly to her name or other noises and people entering the room. The difference in her from just 3 months ago is remarkable.

So the summer was sunny in more ways than one.

The BIG 2

Another birthday has come and gone. Our baby girl is now 2 years old. In some respects this has been the longest two years of our lives but at other times I feel the time has just flown by.

We have been enjoying the weather and spending a lot of time out in our newly remodeled backyard. It is so nice to have a lawn instead of concrete to stick the pool on.

Before we get to all the birthday fun here is a quick update.

Elin has been wearing her CI full time since June 10th. She loves it! For the first couple of days she would smile and get excited when I showed it to her before putting it on. In a short month and half we have seen amazing gains. For instance- we know for sure that she knows her name. Now when we say Elin she turns her head. Major breakthrough for a such a minor thing. Also- whenever she hears music she starts to dance (sway back and forth). She is babbling more and using new consonants and putting strings of vowels together. No real words yet- she does say dada but I'm still not convinced she is entirely sure it's his name.



As for physical progress she seems to be moving along nicely. Our PT Nicole is always amazed at how quickly Elin is picking up on new things and mastering certain movements. She is crawling much quicker now- still on her belly but we are working on getting her up on her knees. We have borrowed a gait trainer and Elin is learning to walk in it and seems to like it more now- at first she wasn't so sure. We are working on standing from kneeling and transitions from crawling to sitting and vice versa. We are encouraged by her continued progress and enthusiasm for movement.

We had a short stint at Children's on July 7th. Elin had a fever seemingly out of nowhere and had three subsequent seizures; two at home and one in the ER. We spent the entire night awake in the ER watching her closely and we were admitted after she had her third seizure and they were able to see how quickly her oxygen levels drop. It's scary and definitely worse to witness when we are in the ER because we are helpless. Now at home I feel like I can take care of her better then anyone and it drove me NUTS that they didn't give her her rescue meds early in the seizure. She had to wait over 8 minutes to get her midazolam and at home we try to give it in the first three. Thankfully she seemed better by the mid day and they sent us packing.

The encouraging news is that kids tend to grow out of high fevers. So our hope is that as Elin gets older she will get less severe fevers and this should reduce her risk of seizure.

Onto the fun stuff!

Elin turned two on July 24th. We celebrated in her coop class at Kindering with cupcakes and again at home that night. This past Sunday we had a backyard BBQ and invited a lot of family and friends to help us officially celebrate her amazing two years. She had a blast and the party was a huge success. My friend Kate made two delicious cakes. A large on for the group, and small "smash" cake for Elin. As you can see from the pictures it was quite a hit.

 And on another exciting note- we have a new member of our extended family. Calvin Scott Schneider was born on July 21st. Scott and Natalie are thrilled and he is absolutely intoxicating.

Bionic Woman

ELIN 2.0 is now activated!

The activation of Elin's cochlear implant went wonderfully today. She responded very well to the new and exciting world of sounds the CI will provide for her. We were sent home with a HUGE backpack and large box full of stuff to support this new device so Myles and I have some homework!

Elin was exhausted and in bed by 6pm tonight- this listening stuff is tough.

We recorded quite a few short vignettes but these two are our favorites.

Enjoy!