So much good stuff

OMG- Elin is in full speed ahead mode. In the last few months she has started crawling on her hands and knees, pulling up to stand in her crib and elsewhere, and her first words are coming. It has been an incredible few months.

After her horrible seizure and hospitalization in November we have adjusted her medication. I believe this in itself has made a huge impact on our daughter. She was stoned on the amount of the Topamax she was on. When we introduced Depakote and started reducing the Topiramate magic started to happen. It is as if we are watching our daughter make up for lost months daily. She is absolutely astounding us and her team of therapists.

It is so wonderful to be able to report something positive and so encouraging. She is acting like a two year old- tantrums and all when she doesn't get what she wants. Generally she is her adorable, lovable, self but there is some sass and attitude stemming.

 Over the past two months Anya and Elin have grown quite close. It is very encouraging to see Elin get visibly excited to see her sister any time of day. Just the other day I was telling Elin we had to get ready to leave to go get sissy from gymnastics. She started saying, "aaaa" and I said yes, your sissy Anya. After me saying "Anya" several times Elin quieted for a brief a moment and said "Anya" clear as day. I was a blubbering idiot after that- it was better than hearing her say mama (which isn't too far behind I suspect).

Her level of understanding reaches WAY beyond her speech capabilities. She pretty much knows everything I am saying to her now. If I ask if she is hungry (and she is) she tells me by laughing and signing more. Same goes for tired, thirsty and many other things. She absolutely LOVES to swing. If I mention the word swing I better be prepared to take her outside and push her right then and there. We are trying to wean her from the binky but if that word is uttered she lets you know she wants one NOW!!!! She is listening to conversations and paying attention to what people say even if we are not speaking directly to her. Really- her progress is astonishing.

Physically she is getting stronger every week. Nicole (our PT) comes on Monday and she is always impressed by Elin's improvements. When she first saw her crawl on her hands and knees after Christmas break she was shocked. She told me she didn't think Elin would be crawling like that for several more months. The walker is going well- it isn't her favorite thing but I think as she continues to become more mobile she will begin to see the use for it.

When she first starting to stand in her crib we were thrilled. However a few days later, and several trips up the stairs to sit her back down again, we decided maybe it isn't all that fantastic. But man, the look on her face when we went in her room the first few times she did it by herself- she was so proud of herself; giggles and smiles for miles. It still makes me smile even though it is time to teach her how to sit down now! :)

2015- Bring it on!

It's time to start fresh again. A new year has just began and our family is hoping for a steady, easy, non-emergent year. Christmas came and went in a flash. Anya loved putting up the decorations this year and her elf on the shelf "Ella" was up to some crazy tricks. Elin was mesmerized by the lights and Christmas tree. I think she was wondering why in god's name we put a tree in our house, but that's just a guess.














We did all the usual holiday stuff; went to the Redmond lights with friends, had the girls take a picture with Santa, went to Snowflake Lane, and baked and ate lots and LOTS of cookies. Christmas morning was relaxed and we were actually able to eat breakfast before opening gifts. I think the only reason we were able to get away with this was because Anya requested cinnamon rolls for Christmas breakfast and she was almost as excited to eat them as she was to open her presents.

Here are some highlights from 2014

1. Trip to Sun Valley last February and skiing with Anya
2. Attending the Kindering Auction with family and friends
3. Elin getting a cochlear implant
4. Spending a lot of time at the cabin in the summer and relaxing as a family
5. Trip to Puerto Vallarta with Susie and Karl and watching Anya swim across the pool
6. Elin starting to crawl and understand language

Quick update on Elin's progress: 

She is using her gait trainer (walker) and is taking steps when we move it for her. She is crawling much more and likes getting into things (especially her sister's stuff). Recently she has been getting up on her knees and taking a few real crawling steps; she is continuing to get stronger everyday. She is saying "dada" for Myles, "eeeee" for Elin and eat, "oooo" for peekaboo and moo, but alas- no mama. I'm still holding out; 2015 is going to be the year of "mama" I'm positive!

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.