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.
I blinked and September slipped by. I spent four days a week attending Elin's preschool with her and enjoyed every minute of it. I have had so much fun getting to know her classmates and teachers- it has been a surprising benefit to "have" to attend school with her. It took longer then expected to get all of her emergency meds and action plans in place so what was supposed to be a short few week thing turned into a month and half but it was worth the wait. Today I dropped her off for the first time and fought back tears as I drove out of the parking lot.
Starting school has been such an easy transition for Elin. She breaks into a smile every time we enter the building and lights up around her peers. Her para educator is amazing and I couldn't be happier with the person they chose for her. It is a wondrous thing to see the way adults and kids are drawn to Elin; she radiates joy and happiness and those around her just want to be part of it. I can't express how lucky I feel to have a place like Meadow Crest to help Elin blossom. She is already making huge strides physically, socially, and cognitively. I can see a major change in her during this short time. I'm awed by her ability to mesh into this new lifestyle so seamlessly- she is such an amazing little girl.
Anya is also flourishing. She has a fantastic, fun Kindergarten teacher and has made many friends already. She rides the bus to and from school and is starting to actually eat some of her lunch now...... On the first day of school she told me, "Mom, they give us 0 minutes for lunch." She is social and eating is secondary, so the "grumpies" sometimes come out at home but once I stick some food in the girl she brightens right up.
I am a volunteer coach for Anya's soccer team and have been having a blast with the 6 year old girls. We practice once a week and have games on Saturdays but focus on having fun with some soccer on the side. It seems to be working well for everyone! The girls named themselves the "Blue Crystal Diamonds"- Did I mention it's a Bellevue team? :)
As far as medical stuff for Elin- we have restarted her on the Onfi and it seems to be going well this time- no swollen eyes. It has affected her sleep and she gets a little manic some nights from 2am-5am but it's not every night. Still- that's a long time to be up in the middle of the night. Myles and I have some nice dark circles under our eyes to prove it. She has continued to have cluster seizures every 2-3 weeks though and we are hoping this new medication can reduce or eliminate these events.
She had her PET brain scan last month. She was actually having seizures the day of the scan so the results are a little skewed but they think they got a good enough read out. The results confirmed the area of her brain where they think the seizures are happening. The hardest part of the whole day was the IV. They spent over and hour and half trying to get a good IV line in her so we could sedate her. They had 5 different nurses and anesthesiologists try to get a decent vein. It was heart breaking to watch them poke her over and over and over again. 10 times in total until finally they were able to get a good line in. I was in tears and sick to my stomach. This is the kind of stuff I absolutely HATE about having her in the hospital for any type of procedure. She becomes a pin cushion and I just have to sit by and watch in horror as it happens. Like I've said again and again, she is fighter and a courageous soul.
Next up is a neuro-psychological exam and then an MRI. We have received confirmation that they will have to remove her magnet in her CI to get a clear MRI. So this means surgery...... again. I'm still not sure about all the details but I know we will be in the hospital for at least a few days. I really wish it could be easier but for some reason nothing with this
process has been easy. Eyes ahead and off we go- into the wild blue yonder...... yada yada yada........
We had lots of fun and took many weekends away as a family. We spent several weekends down in Gig Harbor at Oma's and Opa's beach house paddle boarding, wake boarding, kayaking and relaxing. We made it up to the cabin twice. We went out in the San Juans on Ahma and Bobpop's boat for several days and took a car trip to visit good friends in Spokane.
During our summer adventures Elin turned 3. We celebrated her birthday while we were on the boat and she enjoyed her wrapping paper and carrot cake.
Summer wasn't without excitement however, as Elin continued to have seizures every two to three weeks like clockwork. At first she wasn't clustering but the most recent ones have been a bit more dramatic (if that's even possible for this child) and they come in groups of 2 or 3 every 4 hours or so. It's made for a summer full of ups and downs for our family.
Anya kept busy with soccer camp, art camp, and rock climbing camp. She was able to spend a lot of time with her cousins and is fully enjoying her American Girl doll. The doll might have a bit of personality disorder however since her name has been changed multiple times, but I digress..... oh ya and she lost two teeth.
We were given a wonderful gift this summer. A very good family friend (shout out to Ashley Doran Northup) contacted a non-profit organization called Soulumination on our behalf. She explained our family's difficult medical circumstances and they agreed to take family photos. They commonly work with families that have terminally ill kids but I guess we hit a heart string and they were happy to offer up their services. We met with a brilliant photographer at Luther Burbank park on Mercer Island and the pictures all turned out beautiful. They even made little photo album books for Anya and I and made laminated photo cards for Myles to put in his wallet. It was an incredible experience and we feel so fortunate to have friends in our lives that go out of their way to bring joy to our family.
Aside from trying to keep the children alive (literally) I have had a wonderful summer with the kids. Both girls have been fun to have at home and this past month when therapy and camps slowed down we were able to relax a bit more and soak in the final lazy days of summer.
This week is HUGE for the kids (and me to be honest). Anya starts full day kindergarten at Hazelwood and Elin starts preschool at Meadow Crest four days a week. My little girls are getting so big-how did this happen?
As far as Elin's medical issues go we have had many changes over the past few months. Her medication has changed so many times I can't even keep up. She has had to have blood draws every few weeks and once she was poked FIVE times and they still were not able to draw enough blood for the labs. That was tough to watch- she is such a tough little girl though. I admire her courage all the time.
She has more bionic equipment now too. She was fitted with AFO's (ankle/ foot orthotics) and they have really helped to improve her standing posture. Now if we can just convince her that her gait trainer is "fun" maybe we can make some more headway towards walking.
We just visited the SCH ED (emergency dept) today for a swollen eye. She started another new medication (Onfi) last week and it has been making her agitated and really messed up her sleep. She started getting a really puffy right eye and I took her in today because it was swollen shut. They aren't sure what caused it but they don't want to say it's the medication however the timing is suspect. Thankfully the neurology team is allowing us to skip the new med for a couple days until the swelling goes down. After that I'm not sure what the plan will be.
Other big news is that she is having a PET scan of her brain this Wednesday. Technically it is supposed to be her first day of school but this is WAY more important. It is a 6 hour procedure with EEG work, anesthesia and the brain scan. We are hoping to find out some more information about whether or not she could be a candidate for surgery. After they have these results our epileptologist plans to present her in clinic to the other neuro guru's in hopes of hatching a plan for our little girl. Big to do's coming down the pipe!
We have spent the last 5 days in SCH again. Elin had two seizures at home on Tuesday and after the second one our neurologist requested we come to the ER. So back to the hospital we go. After her first one, I had her IEP meeting at her soon to be school- Meadow Crest; need less to say I was shaken and nervous during the meeting, BUT it went amazingly well. We asked for many accommodations and services that weren't listed in the draft IEP and the school district didn't scoff at any of our requests. So that's good news.
I drove Elin into the hospital and thankfully she waited until we were checked into the ED (emergency dept- they don't call it the ER because they have many rooms) to have her third seizure. She was hooked up to the monitors so we were able to capture her heart rhythms and heart rate and record it for the cardiologists. We were admitted and sent up to the ICU (our home away from home). Again- Elin waited until we were safely up in the PICU and had her fourth seizure. We were able to capture her heart rhythms this time too. I spent the night in the room with her and waited to see what the morning would bring.
Medication changes were discussed early on Wednesday morning, but when rounds started about 11 they had shifted course. Our neurologist decided she wanted Elin hooked up to an EEG for a long period of time in hopes of capturing a seizure. I was doubtful this would work. Elin's recent seizure history is to cluster in one day and then not have anymore for a week or two. But I was happy to have her hooked up because if we could see what her brain does during one of these episodes it would open up new treatment options and give us a glimpse into why she desaturates so quickly.
Days passed and we stayed in the PICU. Elin was such a good sport. She had all these wires glued to her head and had to wear a helmet to keep her from pulling them off. She slept terribly in the hospital with all the interruptions, monitors flashing and beeping, and roommates crying, but was able to maintain a sunny disposition throughout the day. I would be there most the day with either my mom or Susie coming in to relieve me at times. Myles would come in after work and I would leave for a while to teach a class and then return to spend the night. On Thursday the neurologists decided we should take Elin off the Keppra since it was causing side effects (disturbing sleep, irritability etc). We were all hoping this might be enough to lower her threshold and induce a seizure.
By the time Friday rolled around and still nothing had happened we were about to give up. I had left for the morning to teach and Susie was on duty. She had a seizure at 8:45am while she was still hooked up to the EEG. It's a miracle that we caught one. I was excited to go back to the hospital to learn all about her EEG results. By the time I got there, she had had three more, so they had four seizures captured on EEG. They had enough information to go on and had removed all the electrodes from her scalp and head. She was wiped out, napping with a towel wrapped around her head in hopes that the conditioner they applied after removing the electrodes would help soften the glue in her hair.
Want to know what we found out? It's incredible. The first thing to mention is that they also had a video camera recording Elin 24/7 while she was hooked up to the EEG. The neurologists were able to show me the video and her brain activity simultaneously. Her seizures lasted about 15-20 seconds and were BEFORE she stopped breathing. In the video we could see Susie standing at the crib playing with Elin. Elin's body starts to go limp and shake ever so slightly, but her oxygen level remains at 100% during the seizure. It's not until the seizure is ending that you see Susie get concerned and call the nurse, then her oxygen drops and they bag her. BUT we can see on the EEG that her seizure is completely done by the time her oxygen levels drop. All four of these seizures are focal seizures. She is still at risk of having global seizures because of her chromosomal abnormality but the EEG didn't show any global activity. A focal seizure is an electronic discharge/disturbance focused in one part of the brain. In Elin's case, hers was in her left temporal lobe. This particular section controls a lot of our autonomic functions (ie heart rate, breathing etc). The neurologists think that by the the time her seizure has ended she just can't remember to breath again.
So what's the solution: Well that's where things get complicated. For the time being, we have added back the valproic acid (Depakote) in conjunction with the lacosamide and topirimate. Since we now know what type of seizures she has, we have more drug options available to us. If she has more seizures on these current meds, we will try a new course of drugs that target focal seizures. So that's the drug news, but even more exciting is the possibility of finding this brain matter and extracting it. Yes- brain surgery, but it's not that easy. First we have to have an MRI. Thankfully, when we were shopping for CI's we made sure to get one with a removable magnet. So just to get an MRI it will require surgery to remove her CI magnet. Then we have to have several MRI's to determine if we can find the exact area that is causing the seizures and also make sure she won't have any functional repercussions from removing this particular matter. In other words, we don't want to take out a part of her brain that will affect her motor control, speech, vision, cognition etc. Then after all these things are determined and if it is a possibly to accurately and safely remove this brain matter, she has to have brain surgery. Yikes- sounds like a lot more time in the hospital undergoing scary procedures.
But if they can remove it, how amazing would it be if we could lessen or stop Elin's seizures? Perhaps take her off all these drugs that have terrible side effects and live a life where we are all less scared of losing her. I can't let myself get here mentally, there are WAY too many "ifs" on the path to this conclusion, but wow, that would be great right?
Our "good" streak on the anti-seizure meds Topamax and Depakote came to a screaming halt on April 29th. Out of no where- Elin had a seizure. She wasn't sick, didn't have a fever and gave me no indication she was about to have one. This of course is terribly frightening in itself, however the color of her skin was even more terrifying. Since this episode- Elin has had many more seizures. We have been in SCH ER three times and admitted to the ICU twice. Life has not been a bowl of cherries lately.
The good news if there is any is that Elin has not needed rescue meds to come out of her seizures this time around. They are lasting between 1-4 minutes and as soon as she STARTS BREATHING again, they seem to subside. Yes, yes, 1-4 minutes of not breathing. I have given my baby girl rescue breaths more times then I care to count and I could go the rest of my life never having to do that again. The medics and fire department have been frequenting our home and we have taken two rides in the aid car to SCH in the last month.
So why are they so different? No one knows. That's reassuring isn't it?
"Mean Pete" last day on the job
She had seizures in the hospital while she was hooked up to the monitors so the ER and ICU staff can see just how scary they are. I go in with her, saying she "turns blue" and they are like- ya ya OK. Then she has a seizure and desats (oxygen desaturation = meaning all the oxygen leaves her blood) within 30 seconds. They can watch it on the monitor and see it in her coloring. Both times this has happened they are frantically trying to bag her and get oxygen into her and they ask, "is this what she does at home?" And I answer- yes. Now they understand what I mean by blue.
Apparently this is unusual. It isn't unusual for a person to stop breathing or hold their breath when seizing but desaturating at that "profound" a rate is not natural. Just imagine holding your breath for 1 minute- most of us don't even lose the pink in our cheeks. So the neurology team turned to the cardiologists to help explain the mystery. The monitors in the hospital measure her heart rate while she has had these episodes and she continues to have a pulse so her heart is beating.... something else is going on.
During our most recent hospital stay we did an EKG and a heart echo, both of which (thankfully) yielded a perfectly healthy little heart. The terms "pace maker" and "pulmonary hypertension" had been thrown around prior to getting these test results back so I was very happy to learn she had a healthy heart.
She had her first breakthrough seizure 2 days after we returned from CA. We changed her meds and she seemed super irritable and her sleep was terrible. While in the hospital she did an EEG which resulted in nothing abnormal. Just under 3 weeks later she had her second bout of breakthrough seizures. This time was very similar to the last but her coloring was beyond horrible and I thought she wasn't going to come back to me during one of my rescue attempts.
So here we are again. Home with a perfectly happy, healthy little girl, until she stops breathing again. We are getting a bit more anxious to find some better ways to care for her in light of our recent scares. I can't keep breathing into my child in hope of her returning to life. This just isn't fair.
Two weeks ago we took a short trip down to San Clemente to stay with my parents. They rented a condo down there for a month to hang out with friends and house family members who wanted to come visit. Their location was perfectly located between Legoland and Disneyland both of which Anya had never visited before.
We made the most of our trip and went to both parks. I flew by myself with the two girls and Myles met us down there a few hours later that same night after some flight changes and battles with Alaska Airlines. As a funny aside and sparing you the details- when flying with both your children alone going to the bathroom on the airplane is quite the production. Since Elin doesn't stand on her own it was a comedy of errors in the mini stall with all three of us trying to fit and not touch all the disgusting airplane bathroom stuff. Anya and I came out giggling both times because the logistics of managing the "duties" were quite comical.
The weather was mild but on the chilly side for SoCal but we toughed through it and shivered our way through Legoland's waterpark. It was a really neat amusement park but was definitely designed for 4-8 year old kids. Older kids probably wouldn't like the rides that much but they were perfect for Anya. One small snafu was the height restriction. Some of the rides required the rider to be 42 inches tall. Anya is about 41 3/4...... so after being turned away at the "big" roller coaster she shed some tears. BUT then she got on a different ride that had a 42 inch height restriction so we folded up park maps and stuffed them in the bottom of her shoes and voila- she was tall enough to ride the Technic Coaster.
We gave ourselves a days rest between theme parks and headed to Disneyland on Friday. We left bright and early to catch the best (and least busy) part of the day at 8:00 am in the park. Straight to space mountain and Anya LOVED it. So off we went riding the big rides and standing in line. We were able to plan out our trip pretty well with lots of advice we had gathered from friends and family about how to best navigate the park. We rode the rides we knew she would like and avoided the ones that were either too scary or too boring or had WAY too long of a line. Some highlights were meeting the princesses- Cinderella, Jasmine, and Snow White, seeing a great play about Frozen (with a guest appearance by Elsa and Anna), the parade was amazing, and Tom Sawyer's island. We were there from 8 am until 7:30 pm. All of us were exhausted and I tracked our mileage- we walked over 8 miles- Anya did the whole thing without a stroller. It did rain on us off and on- I wasn't dressed for rain so I spent most the day shivering but the miles of walking seemed to help.
Where or where was Elin during all of our park adventures? My parents were amazing and offered to watch her both days so the three of us could go out and enjoy the parks without having to worry about her. One of the things I have been told by other parents of special needs kids, is to be a family of 3 sometimes. It is OK to go and do things without the special needs kid and spend some quality time with your typical child. We took full advantage of this and Anya really enjoyed the two on one time. Elin of course soaked up her two on one time as well with both her grandparents doting over her.
San Clemente is a super cute surfer town with great food and good shopping. It has a beautiful boardwalk that runs parallel to the beach and everyone is out walking, running, and biking along the sandy path. We even saw some whales out by the pier. Both flights with the kids were great- the girls really were amazing on the plane. The trip was a huge success and everyone had a fabulous time.
OMG- Elin is in full speed ahead mode. In the last few months she has started crawling on her hands and knees, pulling up to stand in her crib and elsewhere, and her first words are coming. It has been an incredible few months.
After her horrible seizure and hospitalization in November we have adjusted her medication. I believe this in itself has made a huge impact on our daughter. She was stoned on the amount of the Topamax she was on. When we introduced Depakote and started reducing the Topiramate magic started to happen. It is as if we are watching our daughter make up for lost months daily. She is absolutely astounding us and her team of therapists.
It is so wonderful to be able to report something positive and so encouraging. She is acting like a two year old- tantrums and all when she doesn't get what she wants. Generally she is her adorable, lovable, self but there is some sass and attitude stemming.
Over the past two months Anya and Elin have grown quite close. It is very encouraging to see Elin get visibly excited to see her sister any time of day. Just the other day I was telling Elin we had to get ready to leave to go get sissy from gymnastics. She started saying, "aaaa" and I said yes, your sissy Anya. After me saying "Anya" several times Elin quieted for a brief a moment and said "Anya" clear as day. I was a blubbering idiot after that- it was better than hearing her say mama (which isn't too far behind I suspect).
Her level of understanding reaches WAY beyond her speech capabilities. She pretty much knows everything I am saying to her now. If I ask if she is hungry (and she is) she tells me by laughing and signing more. Same goes for tired, thirsty and many other things. She absolutely LOVES to swing. If I mention the word swing I better be prepared to take her outside and push her right then and there. We are trying to wean her from the binky but if that word is uttered she lets you know she wants one NOW!!!! She is listening to conversations and paying attention to what people say even if we are not speaking directly to her. Really- her progress is astonishing.
Physically she is getting stronger every week. Nicole (our PT) comes on Monday and she is always impressed by Elin's improvements. When she first saw her crawl on her hands and knees after Christmas break she was shocked. She told me she didn't think Elin would be crawling like that for several more months. The walker is going well- it isn't her favorite thing but I think as she continues to become more mobile she will begin to see the use for it.
When she first starting to stand in her crib we were thrilled. However a few days later, and several trips up the stairs to sit her back down again, we decided maybe it isn't all that fantastic. But man, the look on her face when we went in her room the first few times she did it by herself- she was so proud of herself; giggles and smiles for miles. It still makes me smile even though it is time to teach her how to sit down now! :)
It's time to start fresh again. A new year has just began and our family is hoping for a steady, easy, non-emergent year. Christmas came and went in a flash. Anya loved putting up the decorations this year and her elf on the shelf "Ella" was up to some crazy tricks. Elin was mesmerized by the lights and Christmas tree. I think she was wondering why in god's name we put a tree in our house, but that's just a guess.
We did all the usual holiday stuff; went to the Redmond lights with friends, had the girls take a picture with Santa, went to Snowflake Lane, and baked and ate lots and LOTS of cookies. Christmas morning was relaxed and we were actually able to eat breakfast before opening gifts. I think the only reason we were able to get away with this was because Anya requested cinnamon rolls for Christmas breakfast and she was almost as excited to eat them as she was to open her presents.
Here are some highlights from 2014
Trip to Sun Valley last February and skiing with Anya
Attending the Kindering Auction with family and friends
Elin getting a cochlear implant
Spending a lot of time at the cabin in the summer and relaxing as a family
Trip to Puerto Vallarta with Susie and Karl and watching Anya swim across the pool
Elin starting to crawl and understand language
Quick update on Elin's progress:
She is using her gait trainer (walker) and is taking steps when we move it for her. She is crawling much more and likes getting into things (especially her sister's stuff). Recently she has been getting up on her knees and taking a few real crawling steps; she is continuing to get stronger everyday. She is saying "dada" for Myles, "eeeee" for Elin and eat, "oooo" for peekaboo and moo, but alas- no mama. I'm still holding out; 2015 is going to be the year of "mama" I'm positive!
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!
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.
