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
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.
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.
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.
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!)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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/
