Busy much?

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.

Article that struck a chord with us

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.

Enjoy.
http://www.huffingtonpost.com/chrissy-kelly/when-i-realized-delay-may-actually-mean-never_b_6582680.html

"The Revenant" Family

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.

Drug interaction and hospital stay

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.

It's working!!!!!

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.

Shift in focus

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.

Anya's turn- Spa-spital

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!

MRI Results

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.

Kindering Video

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.