Bumpy road to wellness

We are very thankful that Elin's surgery went well. My night in the hospital, sharing a room with a newborn that woke every 1/2 hour was less than ideal, but hey- it's only sleep right?

In the hospital Elin never touched her mastoid wrap (head dressing). However they kept telling me that if she were to remove it we would have to come back to the ER to have it put back on. So what do you think she did just a few short hours after we got home from the hospital on Thursday? Yup- she took it right off. We freaked out because she was thrashing her head about and we were trying to control her without touching her wound or her ear. It was like wrestling an octopus. My dad drove us to the Seattle Children's ER while Myles held her head still in the carseat and I held her hands. It was a mess. We spent several hours in the ER and thankfully asked what we should do if she were to remove it again. Lord knows we didn't want to trek into Seattle every few hours when she wriggled it off again. The doctor gave us extra dressings and a Velcro headband and said "do your best" and sent us on our way.

If a toddler wants to take something off- it comes off- no bones about it. Elin DID NOT want that thing on her head. We struggled, and fought all night and Myles ended up sleeping on the couch with her, wound exposed but hands contained all night Thursday night. Everything we tried didn't work- we had to hold her away from our own bodies or she would rub the bandage off her head. If we let her hands go she would tear it off- so you can imagine how this became an impossible task. I called our surgeon on Friday morning and told him our dilemma. He told us to take it off and it would be fine. WHAT? He said she wouldn't touch it and if she did she would only do it once, once she realized it hurt. So we trusted his advice and guess what- she left it alone; she was happy and we were happy. Life was good again.

Gross out warning- if you are queasy about blood don't read this part. 
When they perform the surgery they cut behind the entire length of the back of the ear and fold it forward to get to the cochlea. Seeing her stitched up ear I had horrible visions of her grabbing her ear and tearing it off. I almost made myself sick thinking about it. At night I had to trust that she would leave her ear alone and not thrash about like she had been before. It was not a stellar week of sleep for any of us.

The weekend came and went and she seemed to be recovering well. Anya had been fighting a cold so we were trying to keep her germs away from Elin. Nope- didn't succeed. On Monday morning Elin had a seizure. She had been acting weird and agitated so I put her back to bed at 8 am. I happened to go in and check on her and she was seizing. I gave her the emergency Midazolam because this seizure (like all her seizures) wasn't stopping. Last time the medicine worked great- this time not so much. She stopped seizing but she wasn't responding to me and she started shaking and wouldn't open her eyes. I waited this out a few minutes to see if she would come too but she was just getting worse. I called 911 and long story short we ended up taking yet another ambulance ride to Seattle Children's ER.

She started to return to normal after the paramedics arrived but seemed agitated still. Back at the hospital she had to have more people poking her and bugging her. She definitely has an adverse reaction to people in scrubs now- it's sad. She spiked a fever while we were in the ER which was probably why she had the seizure. They were worried about infection since she had recently had surgery but all the labs came back negative. She just had a virus.

The hardest part was sitting with her while they inserted an IV in her foot that had just had an IV taken out of it several days before and watching the tears run down her face. She was looking at me and if she could talk she would have been asking me "why, why mom is this happening to me?"  I spoke back to her through my tears by saying, "I don't know, I'm so sorry." It was a very difficult moment.

After all the tests were run and we had her fever under control and her heart rate slowed, we were released. My Dad came and picked us up to take us home. This was the Monday following her surgery.

The very next day, we took the girls to the park near our house. Life was starting to feel good again and the sun was out. Myles decided to do a handstand on parallel bars in the play structure. He missed his dismount and REALLY hurt himself. He hobbled over to me, he was bleeding, he said he felt dizzy and then fell flat on his face. Once on the ground, he started convulsing. I fished the phone out of his pocket while I tried to steady his body and called 911- the second time in as many days. He came to, and he had no idea what had happened. I basically had to tackle him to make him sit back down and waved the firetruck into the park. His face was pretty beat up and he was still in a lot of pain but walked home- trying to 'walk it off" I guess. Once home I called my Dad and Mom, they came over and my Dad drove Myles to the Overlake ER. Ironically my Dad use to be an ambulance driver- with all the work he has had driving us back and forth to the ER over the last several weeks he might as well be one again. Myles was sent home with a catheter that remained in for 11 days! He was in a great deal of pain during that time and is still not feeling great.

Ahhhhh- It's almost funny how UNBELIEVABLE this all is.

BUT- Anya turned 5 this Monday and had a wonderful My Little Pony themed birthday party in our newly remodeled. back yard. Myles and my friend Kelly planned a surprise afternoon out for me. She took me to a spa and out to dinner where two of my other friends surprised me when they showed up. AND Elin's CI gets activated on Tuesday.

Things are looking up- they pretty much have too.

Surgery is a success

All went well today during Elin's CI surgery. It took about 3 hours and we didn't get to see her until 145 but she seems to be recovering well. They tested the implant after it was inserted and the entire electrode array works across the frequency spectrum. We will be at the hospital tonight and hopefully home recovering tomorrow. Happy to have this part almost over with.

Oh, Regence came through and finally approved the surgery so all is good there also. 

Hooray. We are so happy share positive news.  

Under the knife....

Wednesday May 14th is the day Elin will have surgery. We are equally excited and nervous. She is scheduled for 8:30am which is great because we get it done first thing and we don't have to starve her for the morning hours. The surgery itself should take about 2 hours and we are staying the night at the hospital. I'm very happy we get to spend the night- coming home after a big surgery like this would make me VERY nervous. We plan to be home some time on Thursday.

The surgery is minimally invasive. Elin will have a bit of hair shaved off her right side behind her ear. The surgeon makes an incision behind the ear and carves out a bit of room in her skull bone for the implant to reside. He delicately threads the electrode array through her cochlea and all should be set. We are hoping to try to maintain as much of the delicate structures of the cochlea. Who knows- in the future there might be new technology that uses the cochlea even with dead hair cells. So much to think about!

She will heal from the surgery and then have the device activated on June 10th. We have decided to go with the CI company that offers a fully waterproof processor that can be worn anywhere on the body and also a behind the ear processor. I spent a great deal of time "interviewing" the CI manufacturers so I am confident we made the right decision for our family.

Annoyingly, Regence has decided to deny the CI surgery, citing it is an exclusion. We just found this out last week and are working tirelessly with Seattle Children's to get this rectified. CI surgery is normally covered but Regence is stating that the surgeon didn't turn in enough documentation to warrant the surgery. Total BS and we really don't need this added stress at this point in our lives. Any one wanting to help us fight this battle with Regence would be a welcome partner. Ugh.

Also- we took part in the Bellevue 5K/10k race a few weeks ago. It raised money for Seattle Children's hospital and Kindering- kind of a perfect event for us to be a part of. We rallied the troops and ended up with somewhere between 25-30 people on "team Elin." It was a cold and windy day but the course was fun and it was such a wonderful feeling to be surrounded by so many people pulling for our little girl and supporting causes close to our hearts. Kyra made up cute shirts for the family to wear and we will be making this an annual event. So don't worry, if you missed it this year, you can always join us next May.

Recently Elin has been making pretty large strides. She belly crawls all over now and is enjoying her new found freedom. She is babbling much more and saying mmmm more often so I am anxiously awaiting the day mama is uttered. Last week we took her into Kindering and had her try the lightgait machine. It is a harness standing/walking contraption and she did just fine. Didn't scream and seemed to enjoy it but she does better walking behind the kitchen chair as we push it across the wood floor. She is taking steps on her own as we do this so that in itself is incredibly encouraging.

Going Cochlear

We are excited to announce that Elin will be getting a Cochlear Implant on her right side as soon as May 14th. Our family could not be more thrilled for her to be receiving this amazing technology. Our little girl will now be part bionic!

Most people have heard of CI's but aren't really sure how they work. If you want to get a quick idea about how this device actually helps people perceive sound I have inserted this video to help explain the science behind the implant.

We are deciding between two manufacturers of CI's but both are equally ranked in terms of almost everything so it's just a matter of features at this point.

The surgery only takes about and hour and half but Elin will be staying overnight in the hospital. They have to wait several weeks for the implantation site to heal and then she will be activated. This is the cool part. If you haven't ever seen one of the tear jerking video's online of a child getting their CI activated for the the first time here is a good one for you.

We absolutely cannot wait for Elin to hear us and are so excited to be at this stage finally.

Sedated BAER

After 6 months and countless visits to Seattle Children's for behavioral hearing tests we decided to get some solid results by conducting another BAER test on Elin. Now that she is older she needed to be sedated for the procedure since kids her age don't simply sleep through them anymore. As with any anesthetic procedure we run a risk of causing Elin to seize. So we were attempting to gather as many results from behavioral testing leaving the sedated BAER as our last option.

Unfortunately, Elin didn't like being compliant in the sound booth and playing the 'conditioning game" in order to get reliable results. On some occasions she would be conditioned and we could gather some information but she didn't last long so we would have to quit and come back again. It was hit and miss with her- sometimes she would cooperate and sometimes not. After her last failed attempt we threw in the towel and decided to schedule her for a sedated BAER.

At this point we were getting antsy to find out whether or not Elin would indeed fit the category for a cochlear implant. We have been to all the preliminary appointments and she has had all the speech/language testing done. All we were waiting for was the results of her behavioral hearing test.

This past Friday Elin underwent her third BAER test and we have the results.  The sedation went very smoothly and she didn't have any scary side effects. She was under for a little over 2 hours and the audiologist conducting the BAER got a full set of results so we now have a clear picture into how her brain is registering sound. It would be nice to have the behavioral piece as well to round out what Elin actually hears using her aids and with out them, but for now this will have to do.

 Her hearing loss has progressed (meaning it has gotten worse). Her hearing loss in her right ear is now considered severe to profound and her left is severe. So basically the hearing aid on her right side isn't doing much good now. It is amplifying the sounds but Elin's cochlea is not able to detect specific speech sounds so it isn't really benefiting her in any way. Ironically, Elin has been removing her right hearing aid every chance she gets. I can't have it on her in the car or she ends up yanking it out and chewing on it. Obviously this is a safety hazard not to mention an incredibly expensive teething toy. I have been using her FM system religiously. This is device that helps Elin hear my voice from a distance. I attach little "shoes" to the bottom of her hearing aid that act as receivers. I then wear a microphone and no matter where I am in the house she can hear my voice as if I am 6 inches from her ears. It is a very cool tool to have and is used in classroom settings for kids with hearing loss all the time. The self directed hearing aid removal corresponded to my increased use of the FM. Perhaps she takes it out because it isn't doing much
good, or perhaps she is tired of hearing my voice inside her head 24/7. Who knows?

So where do we go from here? The results will be sent to the CI  (cochlear implant) team and they will meet and decide if Elin is indeed a cochlear implant candidate. From the looks of it she most definitely will be. Then we have to make a few crucial decisions:
1. Do we want her to undergo the surgery and have a cochlear implant. ( YES )
2. Which manufacturer do we choose? We have three different choices of implants and all have advantages and disadvantages.
3. When do we have it done and do we have the emotional wherewithal to endure another risky and invasive procedure?

I'll keep you posted.

BUT in brighter news- Elin is belly crawling!

She is now 20 months old and can make it several feet across the floor (without rolling) to get into stuff. Basically the only things so far that are motivating enough are her binkies and her sister's stuff. There are some advantages to having a child with motor delay- one is, selfishly, I don't have to worry about her getting into trouble or chase her around the house. I fear those days are about to end but I am so very glad she is on the move.

She has also started feeding herself almost exclusively She loves to shove as much as possible into her mouth and seems to be quite proud of herself. It's much easier to just stick a few pieces of banana on her tray instead having to mash it up and feed it to her all the time. She and I were ready for the self-feeding phase.

Lastly- we attended the Kindering Auction about a month ago. It was a wonderful night and we had many friends and family members join us. They raised a record breaking $575,000! The video they created that Elin and I were featured in turned out fantastic and I didn't end up sounding like a blubbering, rambling idiot as I feared. I'm not allowed to upload or share the video however. They show it again at the fall luncheon and want to keep it a surprise for that event. So if you really want to see it before October, you have to come to my house and I can show it to you.

RSV(p) Seattle Children's Hospital

Elin had a seizure about a month ago when she had a fever from an ear infection. It was the first one she had had since July when we started her on Topamax. Myles and I were disheartened to realize:
1. She had not outgrown her seizures
2. The Topamax didn't control them completely
3. Fevers increase the likelihood of seizures
4. It didn't stop on its own and we had to use Diastat
We didn't call 911 because we were able to control it once the Diastat was administered and she seemed to bounce back OK.

Fast forward to this Friday. Elin started to come down with a cold on Thursday and developed a fever. Thursday night she and I both were up most the night. She was uncomfortable and I was worried about her having a seizure due to her fever.  Friday morning my mom came over to watch the girls while I taught class. I did express my concern about the possibility of Elin having a seizure because of her fever and my mom was nervous but prepared.

Well it happened and my mom did amazing. While I was at class Elin stopped breathing and my mom had to administer rescue breaths and call 911. The 911 dispatcher told my mom NOT to give Elin the Diastat even though my mom had it ready to go. Of course she listened to the professional on the phone and did as they advised. I arrived home as the medic car was leaving for the hospital. In my brief conversation with my mom she was visibly shaken but was able to tell me a little bit about the episode before I climbed into the aid car.

Elin was still seizing even after two doses of Diastat. By the time we reached the hospital she had stopped breathing on her own in the aid car and was still seizing. She was stuck in status epilepticus. We were rushed in and had at least 15-20 doctors and nurses waiting for us to arrive and they quickly started care. Elin wasn't breathing well on her own so they began bagging her and giving her supplemental oxygen. She was almost intubated but thankfully stopped seizing and began breathing just in time.

We were not as fortunate with the IV however.  Because they needed immediate access they had to insert an IO (that's an IV into the tibia). They drilled a hole in her leg into her bone. When I saw what was happening I almost screamed.  Elin has dealt with so many horribly painful things but watching them drill a hole in her body with out any anesthesia was almost more than I could bear.  By the time Elin finally came out of her seizure she had been given 10mg of Diastat and midazolam. That is a whole lot of Valium for one small body. They established an IV in her foot so thankfully they didn't have to use the IO.  We waited in the ER until we were admitted to the hospital at 6 pm. They ran many labs and various tests to check all sorts of levels of oxygen, electrolytes, sodium etc and they checked for viruses as well.

So in a period of about 1 hour I watched my child seize without rest, stop breathing on her own, have a hole drilled into the bone of her leg, be poked in every hand and foot for a possible IV point, had a catheter inserted and removed, had tubes stuck down her throat and in her nose, and watched the facial expressions of trained medical staff look frightened and alarmed at her inability to breath and stop seizing. Horrifying doesn't even begin to describe it. Myles arrived as she was coming out of her seizure and his presence was a god send.

Elin slept most the day recovering from her horrible ordeal and due to the effects of the Valium. Before leaving the ER her test for RSV came back positive. This was most likely the cause of her illness, fever, and subsequent seizure. Once in the medical unit we were relieved to have a place to stay the night that could monitor her oxygen and pulse. We had our own room as well which was nice. We found out a little later the reason we had our own room was because we were in isolation because of Elin's case of RSV. This is a very contagious respiratory virus and is very dangerous for babies and young kids. Every person who entered our room had to wear a mask and a gown. We weren't allowed to use any of the common areas. These are the places they have tables, refrigerators, microwaves, dishes, TV's, computers etc. Everything we brought in to our room was considered "contaminated' and couldn't be heated up or stored in a fridge. This made it hard to have food in our room for four days but we managed.  We were hostages in our room, however we really didn't want to go anywhere anyway and just wanted to stay by Elin's side day and night. The first night was terrible. I'm not sure if it was the residual effects of the medication or a combination of factors but Elin DID NOT SLEEP Friday night. Myles and I were up the entire night. We got to know our night nurse way too well.

Anya couldn't visit at all and she bounced around from my parents to home with Myles while I stayed with Elin.  We thought we would only be there one night but on Saturday morning they told us they wanted to continue to monitor her because she had had such a horrible seizure and she was still feverish. I escaped for a quick trip to spend some time with Anya and returned to stay the night at the hospital while Myles took Anya home for the night. On Saturday night Elin slept much better but she had a high fever spike at 4am- over 102.5. When the day nurse came in and mentioned how he was concerned with the fever spike I knew we weren't going anywhere yet. Sure enough the doctors came later that morning and we were told to stay for the afternoon and some one would check back in with us before night. Well no one ever did and we found out at 5:30 pm that we were not going home yet again. Myles went home with Anya and we had Susie come up so Myles could go to work in the morning. Elin and I had our best night of sleep on Sunday night and come Monday morning she was happy and bubbly (for a sick kid).

They were concerned with her fluid intake so I started feeding her less solid food and giving her more milk and water because I was worried they would keep me there another night. Thankfully she smiled enough through her hacking cough and snotty wheezes to get discharged. We returned home at 1 on Monday.
Anya was so excited to see Elin she didn't stop hugging her for several minutes. Elin returned the love with coos and pats for her sister. We are so happy to be home.

Why was this seizure so bad? If she had been given the Diastat like usual would it have stopped it or perhaps was this a different kind altogether? Why would the 911 dispatcher instruct my mom not to give my child the seizure stopping medication that is prescribed to her and part of her seizure plan? I plan to call 911 at my neurologists' prompting and ask them what reasoning they have for the advice they gave.





As much as I love Seattle Children's hospital it is the last place you ever want to have to spend time with your child.

Belle of the Ball

HAPPY NEW YEAR!!!!

Here's to 2014 being full of love and less surprises!

The holidays came and went and our family had a wonderful time. Anya had two weeks off school (having her home went smoothly- thank god!) and Elin had two weeks off of therapies. We were able to relax and spend some quality time together. It seems like we spend a majority of our time in the car driving to and from preschool or other events for Anya and to all of Elin's appointments. So it was very nice to have a break from all the rushed exits.

Elin has added another therapy to her repertoire. She started OT this week. Basically the therapist and I just play with her and get her to use her hands in specific ways and play certain kinds of games to stimulate her cognitively and to improve her fine motor skills.

Elin had a major accomplishment over the holiday break. She was able to condition for the behavioral hearing test and we got some solid results. It was very exciting to see her "play the game" and turn her head when she heard the sound. We are going back in for more testing on Monday and (fingers crossed) if we get the rest of the results we might be able to move forward with making a decision about a cochlear implant. So far the tests have shown her to have good low frequency hearing aided and unaided (that means with her hearing aids on and off). The risk with a cochlear implant can be that the child loses their low frequency hearing. Why does there always have to be a down side? So depending on the results of her test we might have a difficult decision on our hands.

One more important note. Elin receives a majority of her services (therapies) through an organization on the Eastside called Kindering. We have had such a wonderful and positive experience with this organization I can't even begin to explain how much support we have needed and received from them. Kindering holds an annual Gala and auction and this year it is March 1st. Kindering approached me and asked if Elin and I could be featured in the "inspirational" video they show at the Gala. I was humbled by the request and of course agreed. They plan to tape an interview with me and a therapy session with Elin and connect our story with another Kindering graduate who is out in the workforce at the age of 21. The hardest part for me is going to be not to cry during the entire interview. Thankfully they do LOTS of editing so the sobs should be tempered a bit.

My parents have purchased a table and have invited 100 of their closest friends so they now have a dilemma on their hands since there are only 10 seats. If anyone else is interested in knowing more about the event just email or call me. I would be happy to point you in the right direction. Tickets are selling fast and they expect them to sell out within the next week or two. Here is the link if you want to know more.
http://www.kindering.org/getinvolved/events/auction/