We did it! We successfully pulled off a full blown auction with a live band to raise money for Elin's medical and therapy expenses.
After it was over people were asking me if I planned to do it every year. I think I gave them my "are you freaking nuts" facial expression and proceeded to explain to them that is the equivalent of asking a woman who just gave birth if she plans to have another kid? I need a break- this was an INSANE amount of work but all worth while in the end.
Of course I had help, and lots of it. Not to mention the amazing generosity of our family's, friends, and clients with all the auction item donations and cash donations. The highlight of the night for me was when we brought up all Elin's "team" - her therapists, para, and teacher and they received a standing ovation from the crowd. I was so touched by both the crowds reaction and all of them giving up a Saturday night and attending our event.
We came out of this with our heads spinning given how much people were willing to bend over backward to help and also open their checkbooks to enable us to provide a brighter future for Elin.
We had over 60 silent auction items and 2 live auction items all donated or curated from people we know. We had an amazing video (seen below) created by a master videographer friend. My dad's band Larry 2.0 played after the auction closed and the night ended with a bang.
Our goal for the night was reached and completely obliterated. We were able to buy Elin the Litegait and treadmill so she could have this amazing equipment available to her whenever we want. It is now a permanent feature of our decor. The bright primary colors go really well with our modern theme (NOT!) Who are we kidding- we don't have a theme- we have kids
So obviously I've "fallen off the wagon" as far as blogging regularly is concerned. Kids, jobs, lives in general just take way too much time.
I am going to summarize our last year in series of short blog posts so they have their own titles and appropriate content.
Here goes....
Our sailing adventure was 100% a success. Did we sleep much.... no, but we had a great time. Elin absolutely loved being in the wind and on the water. Anya loved fishing and sailing and generally hanging out relaxing as we cruised from port to port. Myles and I hardly rested but we actually enjoyed all our time messing with the rigging, anchor, coolers, engines, and stinky head. It was invigorating and we hope to be able to do this same thing again next summer.
We spent a majority of our time in the Canadian Gulf Islands. We visited some of our favorite harbors and enjoyed some new spots as well. We spent time are Rosario where we were married 13 years ago... yes 13 years. HOLY COW! How did that happen?
We did have one night with high winds on anchor and no sleep but generally we felt very comfortable on our chartered 34 foot sailboat. It worked great and since we were used to a 27 foot vessel prior to this 34 feet felt like a luxury yacht.... well not really but it was spacious.
We had grand plans of Elin and Anya sleeping together in the V-berth up front and us in the rear cabin. Elin is just too dang loud! She likes to wake up at 4:30 am and she would like to play, eat and generally have everyone awake in the harbor to play with her. This was not fun but we were able to get her to fall back to sleep most mornings by bringing her into our berth and having her sleep on Myles's chest. (Secretly Myles loved every minute of this BTW!).
We all survived and even left wanting more so we shall attempt another crazy trip next year if circumstances allow.
After returning from our trip in early August the rest of the summer whizzed by. Many weekends up at the cabin or in Gig Harbor and then school started.
Anya started second grade at Hazelwood Elementary and Elin is her third and final year at her integrated preschool class at Meadow Crest. Both girls are happy to be back at school and I'm pleased to have a routine again.
I have to admit this summer was my very best so far with two kids. I enjoyed having less structure with both kids home and flexibility to do what we wanted when we wanted. I believe both girls had a pretty great time as well.
Other exciting news! Elin has started to ride the bus to school. It comes to our house and picks her up and drops her off. She rides on board strapped into her adaptive stroller and locked into tie downs in the buses rear. She has a para-educator- Mady- on board to watch for seizures and generally keep her safe as she rides to and from school. It is really an amazing thing to see her take off in the bus from our house. She is getting to be such a big girl.
Also- we are throwing an auction/dance and fundraiser in Elin's honor on October 21st. If you don't know about it and want more info please contact me.
Schools out for the summer! This was an exciting idea until the first week hit. The kids are home with me EVERYDAY! Everywhere I go they are with me... in the car, in the store, in the bathroom..... anyway it's taken some adjustment but I'm doing better now that we are into our 3rd week of the new program.
Elin is continuing her private therapies over the summer and increased their frequency since she doesn't have school. She basically has some form of therapy appt everyday M-F. She is currently involved in PT, OT, Speech/AR, and hippotherapy (horse PT). She is a busy girl. She has also started crawling much more. Just the other day she crawled all the way out our sliding door, off the patio, through the lawn to reach her swing. Since this I have purchased her some kneepads however- crawling in shorts is not ideal.
Anya turned 8 in June. This is incredible. She is such a big kid now, relatively speaking. She is majorly into Harry Potter and had a Harry Potter themed birthday party. It was an enormous success and thanks to help from both sets of grandparents we pulled it off.
Elin is turning 5 in two weeks. This is hard for me to believe. So much has happened in her first 5 years and our family has had to change and adapt to a new set of rules and expectations. I can say for certain we are all better human beings because Elin has taught us so many things about being human. Empathy, sympathy, despair, grief, pure joy, and unconditional love. Thank you Elin, for giving us so much!
Our summer plans include trips to the cabin and Gig Harbor to play at the beach, lots of time in our backyard playing with friends, and we rented a sailboat for a week up in the San Juans. Anya has swim lessons, a week at Oma's and Miracle Ranch, Camp Sambica and horsemanship camp at Kelsey Creek Farm. We will be busy having fun and enjoying the summer we so definitely deserve here in Seattle.
Myles and I have joined forces and are teaming up to help clients eat, feel and move better. I recently got my nutrition certification and am trying to desperately to get some time away from kids so I can work a little. It's nice to have some adult time every once in a while and also to feel like you can contribute to the family in other ways then just feeding and dressing everyone.
Check out our new website! Arete Athletics
Obviously blogging has taken a back seat to life. Oh well, at least I have my priorities straight.
Quick recap of the last few months:
We went to Cabo with Susie and Karl for 10 days in early December. It was bliss. Elin was seizure-free and Anya swam with the dolphins- 'nuff said. Christmas was a crazy blur but a wonderful time shared with family and friends.
We just went to Packwood/White Pass for a long weekend of skiing. Susie stayed with Elin while Myles and I skied with Anya. It was epic! (as Anya would say).
Where are we..... well both girls are doing really well. Anya is enjoying first grade. She is busy with gymnastics, soccer, skiing, playdates and now she will be in the school play. Also she has no teeth. To be fair she has some teeth just no front teeth. In the last two months she has lost over 5 teeth. The tooth fairy has been very busy and is going broke.
And Elin- well Elin is good generally. We have better control of her seizures. The CBD seems to have had a remarkable impact on the severity and frequency of her seizures. It has allowed us to reduce her anti-epileptic medication to almost nothing. So that's an incredible achievement. BUT- she still has them.
With the reduction in medication she has come alive. Her personality is blossoming and she is just really an amazing person to be around. She is so happy and loving and kind. It's refreshing in our current political climate- she is a breath of fresh air. She giggles and is super ticklish. She LOVES her sister and will give those she trusts and knows GIGANTIC hugs and love pats. Someone who had just met her and spent a few hours with her described her as "delicious". I couldn't agree more.
She is trying to communicate. She has word approximations and I know what she is saying or signing most the time. We are looking into getting her tested for an AAC (augmentative and alternative communication) device. Think highly specialized iPad you can program for her specific communication needs. Her gross motor skills are hindering her capacity to use such devices so far so we are trying to figure out a good fit for her. It seems as if she really would prefer to talk or sign though which we would prefer as well.
She has continued Hippo-therapy at Little Bit Therapeutic Riding Center. "Her" horse Star and she have an amazing connection. I almost cry every time I watch her ride. It's one of the most incredible things I have ever seen. If anyone ever wants to come out and see what this is all about and/or just have a touching experience let me know. The human-animal connection is strong in both these girls.
She is enjoying her second year of preschool at Meadow Crest. She has the same teacher and para-educator so they know Elin pretty well at this point now too. The school district has decided to allow us to keep Elin in preschool for one more year. We didn't even have to push for this (although I was prepared too if need be). The Renton school district has been amazing in partnering with us to address all of Elin's educational needs.
Sleeping... ah sleeping... not happening yet. I figured once we got Elin off all or most of her meds her sleep pattern would mellow out and she would start sleeping through the night. I mean she is on cannabis for god's sake... no such luck. So she had a sleep study. Myles took her in and spent the night with her. She actually did quite well despite looking like a mummy. We are still waiting for the results and hope they can shed some light onto why she wakes in the middle of the night 90% of the time and won't go back to sleep. WE ARE TIRED!!! We are used to it now, so if you see us and we look tired, it's probably because we haven't slept through the night in 4 1/2 years... just sayin....
Sorry- I kind of fell off the face of the earth with the start of school. This summer we were fortunate to have a fantastic caregiver start with our family but she had to return to school in September. All of sudden I didn't have any free time at all to write a blog post- go figure.
Both girls started school quite happily. Anya is in first grade and ended up in a class with many of her friends so she was psyched. Her teacher is pretty amazing too so we were pleased with the placement. Elin is back at Meadow Crest in the same classroom and with the same teacher and para-educator (one on one) like last year. Her first day back she was over-joyed and very boisterous about being back in her class again. It was awesome to see her so excited!
Elin was able to start up with hippotherapy again at Little Bit Adaptive Riding Center. She absolutely loves to ride horses. It is such an amazing thing to see the way she connects with the animal and how the horse responds to her energy. I look forward to taking her every Friday.
For Elin most therapy is REALLY HARD WORK! But horse therapy is totally enjoyable for her. She gets an amazing workout sitting up on the horse for 30 minutes and she doesn't even know she is working. Now if I could just invent some sort of exercise regime that made adults feel the same way I would be a billionaire!
Elin averages about 4 different types of therapy sessions a week outside of school. She has private OT, PT, hippo and AR (aural rehab- akin to speech therapy for kids with CI's). So we are busy pretty much everyday. Fitting her regular medical appointments around all this is somewhat of a challenge. I feel like I am a personal assistant trying to manage both these girls schedules.
Anya is playing soccer again this fall and I'm her coach. It is a great opportunity for me to feel like a "regular" mom and for Anya and I to have an activity that is completely our own. Her team is comprised of many of her friends and they are all 6 and 7 years old. Trying to coach these little spit fires is a bit like herding cats but I love it. They are fun and seem to be completely loving soccer despite our rather (uh huh) terrible record. So I guess my goal of having the girls play for fun and not worrying about winning or losing has been met.
As far as very exciting news for the fall, we welcomed in two new baby girl cousins/nieces. Christel and Jorge welcomed their daughter Stella on Sept 29th and Natalie and Scott welcomed Cora one week later on Oct 5th. Anya was eager to hold both baby girls as soon as possible. It's hard to imagine my little girl was that itty bitty once too! I LOVE babies.
My dad sent this link to me. I love it. It is so similar to our journey over the past 4 years with Elin. And we are on the other side seeing through the clouds now as well.
Fair warning- I'm going to complain. I think I've been through enough lately to earn the right to a blog post full of gripes.
This year has been.... well..... tough. Boone almost died, Anya was hospitalized and Elin has well - you know- had lots of issues. Thankfully Myles has escaped unscathed this year with all his "limbs" intact. :)
Myles just read the book the Revenant and convinced me to see the movie. Gory and dark as it was I felt a connection to the movie. Our family has been through the wringer time and time and time again. Our story is similar to that of the movie, we just keep going no matter what crazy obstacles are thrown our way. I mean, I haven't had to fight off a bear or hollow out a dead horse to survive the cold, but there have been times this year where situations have seemed as dire.
Of course there is a silver lining, we are all alive. Boone is actually healthier then before his illness, Anya can walk again and Elin is responding very well to CBD. But all of these victories have left us battle scarred and weary.
In case you weren't aware of our latest "predicament"; Elin broke her leg last week. Yes, you read this correctly. Our child who barely moves somehow broke her leg. How in god's green earth is that fair?
She got her foot stuck under the couch and she leaned back and turned one direction expecting her foot to follow but instead her left tibia fractured vertically. They don't cast kids for this type of injury much anymore and gave us a window of 3-6 weeks for recovery. Apparently it's called a "toddler fracture" and they are very common. Kids self-regulate and will start to weight bear when they feel it is healed. With Elin I feel we will need to "convince" her and assist her to start weight bearing again but in the meantime we are just super careful not to bump her leg or pull on it. She is doing better now but was on a constant dosing schedule of ibuprofen for nearly a week. She cried A LOT. She never cries and has an insanely high pain tolerance so to hear her whimper in pain was almost unbearable. (Akin to being mauled by bear...... I digress)
So there you have it. All three of my children (Anya calls Boone her brother so this is a legitimate claim) have spontaneously stopped walking this year. Even my child that doesn't walk, now cannot physically walk. Seriously people, this has GOT TO STOP!!!!!!
In other news, Elin started hippotherapy at Little Bit Therapeutic Riding Center last week and had one session prior to breaking her leg. She LOVED it! The whole experience was amazing and I can't wait to get her "back up on the horse" once her leg allows her to resume her weekly therapy.
We can't seem to stay drama-free for very long. A few weeks ago Elin wouldn't wake up-literally. She slept though the night which was my first clue that something was amiss but when she wasn't up by 8:30am I got really nervous. Susie was here and we both went up and tried to rouse her but she didn't want to wake up. So I packed a bag, cancelled my class I was about to teach and headed with Elin to SCH.
After all day in the ER we were admitted for the night. They ran a battery of tests but my underlying suspicion was that her CBD was causing one of her AED's (anti-epileptic drugs) to spike in her system. She slept a majority of the day which was a blessing since it took them over 4 tries to get an IV in her. She had a cold and had been fairly sick leading up to this so we had them swab her and she tested positive for rhinovirus. We had increased her CBD dose earlier that week and had seen her normal increase in drowsiness but it had been improving until that morning. The only other thing that had changed was her new batch of oil we started using on Thursday night.
By Saturday mid-day she was lively and hungry and seemed to be on the mend so we left the hospital. It would take several days to get blood test results back that would help us determine whether the Clobazam levels had been affected or not so there wasn't any need to stay since she seemed fine again.
Back at home she remained tired. We chocked it up to her being sick and just needing to rest. But come Monday when she wouldn't wake up all day again we headed back to SCH that evening. She ended up staying until Thursday afternoon and while we were there we switched her back to the capsule form of CBD and also lowered her Clobazam dose. The blood test results came back and sure enough her Clobazam metabolite was through the roof which was causing her increased drowsiness.
The good news is that this experience has opened up the conversation with the SCH neuro team about lowering her AED doses. They seem to be more open to it now and we were able to continue to use the CBD in the hospital. When we shared with them how well it had been working for her they seemed genuinely happy to hear that it was controlling her seizures. She did have one seizure prior to the hospital stay when she was coming down with her cold originally. Also- while she was in the hospital the second time she had about 4 seizures on Tuesday because she hadn't had any drugs for over 24 hours. Once we got her started again and re-introduced the CBD (at a lower dose as well) she stopped clustering.
Since being home she has had more apneic episodes. We need to raise her CBD dose but worry about it interacting with her other drugs still. We need to contact SCH and make sure we get a plan to start lowering her AED's soon since we need to increase the CBD. I mean lets get her up on the drug that helps, and wean her off the ones that don't seem to be doing much good- possibly more harm anyway.
So that is our current battle- trying to figure out how to manage all the drugs without landing in the hospital again.
As always- we had amazing help from family. Kyra and Susie were both instrumental in keeping our heads attached to our bodies and making sure Anya ate and went to school. All the cogs in the wheel have to keep moving when our world erupts- it is tough to manage it all.
OK, I can write it and say it with certainty now. The CBD oil is working! Elin has been seizure free for over a month- exactly the same amount of time she has been taking the oil. This is by far the best result we have ever had from any drug she has tried. We can tell there are times when her body "wants" to have a seizure- she gets spacey or a little apneic but she doesn't go into a full seizure, we can snap her out of it. These episodes have been pretty regular and are following her prior seizure pattern of about one or two days every week- usually during the weekend. BUT she isn't having a seizure- or at least not a scary life-threatening one.
We kept our expectations in check during the first few weeks. I wouldn't even tell people that I thought it was working for fear that my utterance of this wonderful news would ruin everything and she would go right back into her seizure pattern. Now I feel more confident in announcing that YES it is working and we couldn't be happier. She is happy too, she laughs more and eats more (sometimes) and generally SLEEPS better. Everything is good right now.
She had surgery two weeks ago to remove a sebaceous cyst on her temple right next to her implant. It went very well and the surgeon was able to remove the entire cyst. He said he has done over 1000 CI surgeries and never once has anything like this occurred. I told him it's because everything about Elin is special. He agreed and we hope it doesn't grow back.
So now what? Well, we are continuing to work with our naturopath and I'm hoping to start the process to wean Elin off some of her pharmaceuticals. We need to do it slowly and only one drug at a time so it will be a long process but with results like this I can't wait to see how much more alive she can become with out all the drugs.
The company that has been helping us and supplying us with the oil has been another amazing gift. These guys are so generous, friendly, professional, and kind I can't even begin tell you what a positive experience I have had so far. For the first time in forever I feel like there might be a light at the end of the tunnel and perhaps we can get our daughter off some (if not all) of her AED's and bring her back out of a fog of pharmaceuticals. I can't even imagine how this one simple plant could quite possibly change the course of her life. The possibilities are endless and her future is bright.
We have seen cognitive changes in Elin just from adding the oil. She has started signing more for what she wants; she is verbalizing more and trying to say things (like mama!!!!); she is more motivated to move and she is generally happier. I'm so glad I can write a positive blog post and share some wonderful news with our "village" of supporters. It's all sunshine and rainbows in the Magnuson house right now.
I finally reached my tipping point. After pushing for years for Elin to be considered for the Ketogenic diet we still were not beginning.... why? Oh because SCH really likes to "vet" their patients and I couldn't hang I guess. Here's the short version.
I had heard about this "miracle diet" from other parents and people in the epilepsy community when I would discuss Elin's seizure history. When Elin's seizures were getting worse and not being controlled by anti-epileptic drugs very well I raised the question to her neurologist or anyone that was helping us in the ER or the doctors during rounds while she was staying in the hospital. The answer was always the same. They had about 3 or more drugs on their list of possibilities that they preferred we try first. So we did- all of them and now she is on three anti-epileptic drugs and has apneic seizures every week. They are obviously working miracles.
So when we came back from Mexico right before Christmas I sent an email to our new neurologist (she got moved to an epileptologist) and told him we would be starting the diet. So the process began in December. Here we are into March and still no diet. We have been to SCH to meet with the Keto epileptologist (yet a different neurologist); to meet with the dietitians and nutritionists, and to have a swallow study. Mind you, she is admitted to the hospital for three to four days to start the diet so they can monitor her. My feeling was many of these things could be done during her stay. These appointments are all on top of all the other zillion "normal" appointments Elin has for her multiple health issues. When we came back from Sun Valley I sent another email stating I wanted Elin to start the diet NOW. So I got a call to bring her back in yet again for another consultation. That did it, I was done.
I have been researching another possible option for Elin while all this was going on. There has been a lot of buzz around cannabis and its use in epilepsy. There was a 60 Minutes special a few years ago on a specific kind called Charlotte's Web that started the ball rolling I believe. I was intrigued and dove in, From all my research I think it is worth a shot for Elin. There are very few side effects and the benefits range from somewhat helpful to stopping seizures forever. So what the heck, instead of overhauling her diet and feeding her 90% fat (which can be hard on her body as you might imagine) lets try this first.
When I told the neurology and keto team at SCH I wanted to give CBD oil a chance first they laughed at me. They cited multiple reasons for their concern from purity, to efficacy and even pesticide scares. What? The biggest problem we face are the possible drug interactions with all the crazy sh*t they have her on right now. I understand that CBD oil is not overseen by a federal agency but we will be going through a naturopathic doctor and doing this as medically safely as possible. I'm not going out to the street corner and scoring some pot to bring home for my daughter to get high on. Come on people- really? It is being used as an herbal supplement/medicine. Some strains have trace amounts of THC (the psychedelic high inducing part of marijuana) but most have none so she won't even feel anything. The more we get into this the more I will learn and I will share all the details especially if it helps.
So that's our new path. It hasn't be easy to find a Naturopath who prescribes CBD and feels comfortable working with Elin. But I think we have found a winning team now and I am very optimistic about this new track.
We had to switch Elin to tablets for most of her meds in prep for the Keto diet and she hates them. Think about mashing up Tylenol and sprinkling it on your food- it pretty much tastes like poison. So she spits it out. Well, low and behold, some of the days when we knew we didn't successfully get all her meds in she was a different kid. Her eyes sparkled, she moved around more, she talked more, she laughed more. This made Myles and I realize just how drugged our daughter is. I don't even think we know the real Elin. I'm so excited to meet her- I have high hopes (no pun intended) this CBD oil will help us control her seizures more and allow us to wean her off some of her less helpful drugs.
Wow- Swedish Issaquah is NICE! I gave birth to Elin here and remember being sad about having to leave so abruptly when she was transferred to the NICU at Swedish First Hill after she stopped breathing at 12 hours old. This hospital is PLUSH!
We are use to SCH. By "use to" I mean we should have our own furnished suite by this time but alas we are always assigned to miscellaneous rooms in the ER, ICU and general recovery floor in River. At SCH we share rooms; we have roommates that have multiple "loud" guests/family members and leave the TV on ALL NIGHT. I overhear conversations I shouldn't be listening too and other inappropriate things that usually only close friends disclose to one another.
Swedish Issaquah is the Ritz Carlton- my friend refers to it as a "spa-spital". It is amazing. Anya is staying in the "peds" unit- she is the ONLY patient. We have all the nurses' attention and the doctors and other specialists come specifically to see her. I'm sure it's different when the 10-20 rooms are full but seriously- this is unreal.
Oh- why are we here. Well for starters- it's not about Elin..........
LONG STORY- Here's the short version.....
Anya complained about her foot on Sunday and had another fever. (She had been sick the previous week and missed skiing on Sunday and school on Monday and Tuesday). We skipped skiing (again), but I had a sinking feeling something wasn't right. I sent her to school on Monday and then to urgent care at SCH Bellevue on Monday night when she was still limping in the afternoon (when I made her walk home from the bus stop) (no guilt here, ahem). They diagnosed her issue as "acute reactive arthritis" after doing a x-ray and hearing about her recent illness. No blood tests were done or even suggested.
I tried to send her school on Tuesday but she wouldn't walk. On Wednesday it was better again but she was in MAJOR pain when she came home and the fever came back Wednesday night. Thursday morning we went to the pediatrician and the rest is history!
She is in good spirits but the constant doctor interruptions and IV pokes (she keeps blowing her IV's) are tough. She has been a trooper though- man am I proud of her. The silver lining I'm trying to grasp from all this trauma is that Anya is an amazingly stoic patient because of all the terrible things she has had to witness her sister endure. Anya has attended many of Elin's early morning (trough) blood draws where it takes the phlebotomist 3-7 pokes to get a vein that allows enough blood to be drawn for the multitudes of tests. She has seen her sister go in for multiple surgeries, scans, MRI's, and other procedures and return to us wounded but well cared for. Anya has learned from all of these experiences and when the nurses ask her to be still to try for a third time to get a good vein for her IV, she sits still and silently weeps, but stays stoic and strong through the process. When the task is done she cries and needs comfort but, man, am I learning a lot from watching her. She is amazing and oh so wise beyond her years.
After many tests, scans, labs, x-rays,and MRI's they have determined she has a staph infection in her bones on her foot. The treatment is many days of in hospital IV antibiotics and then a long course (several weeks) of oral antibiotics at home.
Timing wise we are hoping at the earliest to be discharged on Monday; at the latest Thursday. She REALLY wants to do her Valentine party at school so I'm dangling that carrot to get her to walk and use her foot and get out of the hospital as soon as she is able. She can return to school on oral antibiotics as long as she is well enough physically to attend.
Crappy stuff but we are surviving. When both my kids couldn't walk this week I was a little hopeless, but my spirits are returning. This IS curable and my kids are TOUGH!
We made it through the surgery. Elin was under for almost three hours and came out of it just fine. The MRI took a really long time because they needed to get a good look at her brain. She has had a lump on her CI by her ear for a while and it has been getting bigger. The surgeon thought it would be an abscess stitch but once he got in there he said it was a sebaceous cyst. He drained it but didn't remove it.
We were also concerned that her entire implant had shifted forward some time ago and after opening her up he confirmed that yes, it had shifted. We are hoping this is the last time we need to cut open her head but he said that if the cyst fills up again he will have to remove it and then he will open her head all the way up again and move the CI back to where it is supposed to be. Not the best news!
Elin had seizures everyday for nearly a week following her procedure. It was a rough few days for us that's for sure. She also would have nothing to do with the bandage on her head. She had removed it before even leaving the OR. The nurses tried to use a bandage and a neoprene headband; she wasn't a fan of that either. So last Thursday I enlisted Susie to come up and help me and we spent the entire day trying to keep her hands off her head and tried to distract her. She is no dummy; when her hands were restrained her would lay on her back and rub her head back and forth until she worked the headband off. By Thursday night we gave up and let her wound breathe and hoped she wouldn't scratch or touch it. Sure enough, Once the head wrap was off she left her head alone.
The doctor recommended a full week without wearing her CI so she couldn't hear and that was also a problem. The whole post surgery was pretty much a disaster but we made it through and now a week out we are trying to return to normalcy. She has been going to school this week and has remained seizure free there- so that's something!
Yesterday we started letting her wear her CI again. I wish I would have had my phone by me when I put it on her. She lit up- started giggling and babbling. It was obvious she was VERY excited to be able to hear again. Unfortunately her incision became swollen yesterday so she couldn't wear it all day.
We met with her epileptologist (neurologist) yesterday to go over the results of her MRI. It revealed that her brain has continued to grow and develop as any brain typically does but now that it is bigger we can see more of the structure. When she had her first MRI at 7 months they were able to identify her partial agenesis of her corpus callosum. Basically this means she is missing part of the brain matter that connects the two hemispheres of the brain. From her most recent MRI it appears in some cross sections that her corpus callosum connects (albeit thinly) in some spots. It is still much smaller then a typical corpus callosum but it has continued to develop and grow. She does however have a broader issue- it's call cortical malformation- meaning parts of her brain were not formed correctly in inutero and no amount of maturation will fix that. So her left and right temporal regions are not normal. We know from her EEG's that the seizures tend to come from the left temporal region and the MRI supports that the tissue in this region has not formed correctly.
So what's next- well that's the tricky part. Perhaps more EEG's, sleep studies and even another MRI to measure how her brain functions under certain tasks. This news did not make Myles or I happy. We thought this MRI was the only one she would need and we are not planning to put her under the knife again to remove the magnet so they can do this all over again- no thanks!
So we are moving in another direction called the ketogenic diet. It is a special diet that can sometimes help kids with all different kinds of intractable epilepsy. Its is 90% fat- basically no carbs, minimal fruit and veggies. All oils, butter, creams, high fat meats etc. I will write a separate post about this because it is intense and kind of confusing but very promising.
In summation- no real definitive answers to our most pressing questions. Can she under go epilepsy surgery? Not without many more tests. Does the MRI explain why she has these seizures? No, but it can tell us the area where the seizures are coming from is abnormal. Can we control her seizures better? With the new diet- perhaps.
If you haven't seen it yet, this is the video that Kindering made featuring Elin and another little girl named Kelly. They have used it for the past two years so we weren't able to post it, but now it is up on You Tube so we can share it with everyone. So much has changed in the last two years but it still makes me cry every time I watch it. You might want to have tissues handy.
Ahhhh, a trip to Mexico was just the R&R our family needed. It got off to a bit of a rocky start with Elin having several seizures the first few days we were in Cabo, but she stopped having them and our vacation went a little smoother after that. Anya found a little girl friend almost immediately and spent the entire week playing with her. Vivia was 4 and was on vacation from Utah with her parents and grandparents. They were really nice people and we took turns watching each other's girls by the pool and on the beach. Every day at 2pm they rang the "happy hour" bell and the girls went swimming over to the pool bar to get their virgin Pina Coladas. It was really nice for Anya to have a friend to play with while we were there. Anya was a fish, she spent most the day in the pool and came back with a lovely tan despite all the sunscreen we lathered on her body.
Susie spent a lot of her time in the condo watching Elin. After the first few days we brought her out more and she spent some time in the pool and on the beach. Her sleep was terrible at night because her meds were making her manic in the middle of the night so Myles and I took a lot of naps. Susie even had Elin sleep one night down in their room so Myles and I could get a full nights rest. That was special!
We stayed about 3 miles outside of San Jose so we ventured into town a couple times but never actually went into Cabo proper. No late nights at the Giggling Marlin for these old people- we just wanted to get some rest! Twice we went to a great snorkeling beach, once with just Anya and Myles and myself and the other time with the whole gang. Elin enjoyed the sand and the small waves and Anya liked the fish once she got use to them.
The plane rides both to and from went very smooth. Elin slept both ways (which was a first for her, she NEVER sleeps anywhere but her crib) so we felt lucky to have some quiet time on the trips.
Back at home we felt like someone pushed fast forward towards Christmas and I raced around trying to catch up for the "looming" holiday. We were able to get pictures with Santa and all the gifts bought and wrapped in time for Christmas. We had several family Christmas parties to attend and hosted our annual Christmas Eve cocktail party as well. By Saturday the girls were pretty well "Christmased" out but rallied to have one last blast at my parents for my family's Christmas celebration.
Christmas was a success by all accounts. Myles got a new bike so he and Anya were able to go on a bike ride together for the first time. Elin got a "laptop" and she has been busy helping Myles with his TPS reports.....
We joke in our family that we really can't plan anything. Elin always has her own idea about the way things are supposed to play out. This surgery was no different. She has been REALLY sick with Croup or some other kind of terrible cold virus and she couldn't have surgery yesterday. We kept hoping she would pop out of this illness but it is not going away. I took her to the pediatrician on Tuesday and he gave her some steroids and a breathing treatment. She was on the mend for about 12 hours but has become sicker again. I will be taking her back to the doctor tomorrow if her fever doesn't go away.
The surgery will be rescheduled for 4-6 weeks out from now when she is fully recovered from this illness. It was severely disappointing to not be able to go through with the process. We went into the hospital yesterday and spent 2 hours waiting and prepping for surgery only to have the anesthesiologist tell me that the risks out weigh the benefits and we should postpone. I wish they would have told me that prior to making all the arrangements and going to the hospital but the surgeon suggested we bring her in and see what they say. I have learned my lesson, next time I will call the hospital and get a solid yes or no before heading in if she is ill at all.
The silver lining of course is that we get to have Thanksgiving with our family but it will be a short visit given Elin's continued illness.
So we still need healing thoughts and we are trying our best to get our little one well again.
Happy Thanksgiving and remember to share with your family the many things we all have to be thankful for.
Since the last blog post Elin has had more bouts with seizures. We spent one night in the ICU in late October and just spent 5 hours in the ER yesterday. We were at Children's for her pre-op appt yesterday and she had 4 seizures in 2 hours so we headed straight from her appointment to the ER. Both times we have been admitted she has come in the ER doors seizing, not breathing and blue so we get rushed back to the "big" room immediately. I chalk this up to Elin being impatient; she simply doesn't want to wait in the ER waiting room so we just "come in hot" as I have been calling it.
Against our will a new tradition of spending Thanksgiving in SCH is beginning. Last year we were in the ICU during Thanksgiving and this year we will most likely be staying the night Wednesday night after surgery hoping to go home on Thursday. Of course, even if we are home Elin's head will be wrapped and I'm not sure she will be able to go anywhere.
We were able to get her MRI scheduled but it had to be on the 25th, hence the hospital stay. It's been a bit of a battle trying to coordinate all the different departments (neurology, imaging, otolaryngology) to get the procedure scheduled. So once they gave me the date I said sure, let's just get it done.
Elin's new straps for her AFO's
Elin's implant in her head has moved forward from where the surgeon had originally placed it. During the original surgery they drill a "well" in the skull and recess the implant in the well. The bone starts to grow over the implant and it holds it in place. Well Elin's skull was too thin at the time of implantation to drill a very deep well so her implant has shifted. She also has had a growing "lump" on her right forward side of her implant. We have watched it carefully but over the last few months it has tripled in size and she seems to be irritated by it. We are concerned it is causing her pain and we were worried about what might be causing it. Implants can be rejected if the body decides to get rid of it.
We met with the surgeon yesterday to discuss what the procedure will look like on Wednesday. They will put her under anesthesia, remove the magnet, take her to the MRI, bring her back and then they will deal with the implant issues. Our surgeon thinks the bump is an abscess caused by an internal stitch not fully disintegrating after her original surgery. He plans to drain it and after he does that he can asses how far the implant has moved and if he wants to attempt to move it back. We could be looking at a short surgery or a really long surgery depending on what he decides needs to be done once he has "cut her open." Unfortunately there are a lot of risks associated with both removing the magnet and moving the device. The device could be compromised- that would be terrible. We are hoping for the best.
So we don't know if we will be home for Thanksgiving and even if we are home what shape our family will be in.
We wish everyone a Happy Thanksgiving and please send thoughts and prayers our way for this to be a quick and relatively painless procedure of our little girl.
Make sure you toast to good health this holiday- it really is the most important thing.
