Bringing in the cardiologists

EEG hair

Our "good" streak on the anti-seizure meds Topamax and Depakote came to a screaming halt on April 29th. Out of no where- Elin had a seizure. She wasn't sick, didn't have a fever and gave me no indication she was about to have one. This of course is terribly frightening in itself, however the color of her skin was even more terrifying. Since this episode- Elin has had many more seizures. We have been in SCH ER three times and admitted to the ICU twice. Life has not been a bowl of cherries lately.
The good news if there is any is that Elin has not needed rescue meds to come out of her seizures this time around. They are lasting between 1-4 minutes and as soon as she STARTS BREATHING again, they seem to subside. Yes, yes, 1-4 minutes of not breathing. I have given my baby girl rescue breaths more times then I care to count and I could go the rest of my life never having to do that again. The medics and fire department have been frequenting our home and we have taken two rides in the aid car to SCH in the last month.
So why are they so different? No one knows. That's reassuring isn't it?

"Mean Pete" last day on the job

She had seizures in the hospital while she was hooked up to the monitors so the ER and ICU staff can see just how scary they are. I go in with her, saying she "turns blue" and they are like- ya ya OK. Then she has a seizure and desats (oxygen desaturation = meaning all the oxygen leaves her blood) within 30 seconds. They can watch it on the monitor and see it in her coloring. Both times this has happened they are frantically trying to bag her and get oxygen into her and they ask, "is this what she does at home?" And I answer- yes. Now they understand what I mean by blue.

Apparently this is unusual. It isn't unusual for a person to stop breathing or hold their breath when seizing but desaturating at that "profound" a rate is not natural. Just imagine holding your breath for 1 minute- most of us don't even lose the pink in our cheeks. So the neurology team turned to the cardiologists to help explain the mystery. The monitors in the hospital measure her heart rate while she has had these episodes and she continues to have a pulse so her heart is beating.... something else is going on.

During our most recent hospital stay we did an EKG and a heart echo, both of which (thankfully) yielded a perfectly healthy little heart. The terms "pace maker" and "pulmonary hypertension" had been thrown around prior to getting these test results back so I was very happy to learn she had a healthy heart.
She had her first breakthrough seizure 2 days after we returned from CA. We changed her meds and she seemed super irritable and her sleep was terrible. While in the hospital she did an EEG which resulted in nothing abnormal. Just under 3 weeks later she had her second bout of breakthrough seizures. This time was very similar to the last but her coloring was beyond horrible and I thought she wasn't going to come back to me during one of my rescue attempts.

So here we are again. Home with a perfectly happy, healthy little girl, until she stops breathing again. We are getting a bit more anxious to find some better ways to care for her in light of our recent scares. I can't keep breathing into my child in hope of her returning to life. This just isn't fair.

SoCal and Disneyland

Two weeks ago we took a short trip down to San Clemente to stay with my parents. They rented a condo down there for a month to hang out with friends and house family members who wanted to come visit. Their location was perfectly located between Legoland and Disneyland both of which Anya had never visited before.
We made the most of our trip and went to both parks. I flew by myself with the two girls and Myles met us down there a few hours later that same night after some flight changes and battles with Alaska Airlines. As a funny aside and sparing you the details- when flying with both your children alone going to the bathroom on the airplane is quite the production. Since Elin doesn't stand on her own it was a comedy of errors in the mini stall with all three of us trying to fit and not touch all the disgusting airplane bathroom stuff. Anya and I came out giggling both times because the logistics of managing the "duties" were quite comical.
The weather was mild but on the chilly side for SoCal but we toughed through it and shivered our way through Legoland's waterpark. It was a really neat amusement park but was definitely designed for 4-8 year old kids. Older kids probably wouldn't like the rides that much but they were perfect for Anya. One small snafu was the height restriction. Some of the rides required the rider to be 42 inches tall. Anya is about 41 3/4...... so after being turned away at the "big" roller coaster she shed some tears. BUT then she got on a different ride that had a 42 inch height restriction so we folded up park maps and stuffed them in the bottom of her shoes and voila- she was tall enough to ride the Technic Coaster.

We gave ourselves a days rest between theme parks and headed to Disneyland on Friday. We left bright and early to catch the best (and least busy) part of the day at 8:00 am in the park. Straight to space mountain and Anya LOVED it. So off we went riding the big rides and standing in line. We were able to plan out our trip pretty well with lots of advice we had gathered from friends and family about how to best navigate the park. We rode the rides we knew she would like and avoided the ones that were either too scary or too boring or had WAY too long of a line. Some highlights were meeting the princesses- Cinderella, Jasmine, and Snow White, seeing a great play about Frozen (with a guest appearance by Elsa and Anna), the parade was amazing, and Tom Sawyer's island. We were there from 8 am until 7:30 pm. All of us were exhausted and I tracked our mileage- we walked over 8 miles- Anya did the whole thing without a stroller. It did rain on us off and on- I wasn't dressed for rain so I spent most the day shivering but the miles of walking seemed to help.

Where or where was Elin during all of our park adventures? My parents were amazing and offered to watch her both days so the three of us could go out and enjoy the parks without having to worry about her. One of the things I have been told by other parents of special needs kids, is to be a family of 3 sometimes. It is OK to go and do things without the special needs kid and spend some quality time with your typical child. We took full advantage of this and Anya really enjoyed the two on one time. Elin of course soaked up her two on one time as well with both her grandparents doting over her.


San Clemente is a super cute surfer town with great food and good shopping. It has a beautiful boardwalk that runs parallel to the beach and everyone is out walking, running, and biking along the sandy path. We even saw some whales out by the pier. Both flights with the kids were great- the girls really were amazing on the plane. The trip was a huge success and everyone had a fabulous time.

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.